Open Collections

UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

Learning to be proud : First Nations women’s stories of learning, teaching, art and culture Miller, Lorrie 1995

Your browser doesn't seem to have a PDF viewer, please download the PDF to view this item.

Item Metadata

Download

Media
831-ubc_1995-0516.pdf [ 8.12MB ]
Metadata
JSON: 831-1.0054767.json
JSON-LD: 831-1.0054767-ld.json
RDF/XML (Pretty): 831-1.0054767-rdf.xml
RDF/JSON: 831-1.0054767-rdf.json
Turtle: 831-1.0054767-turtle.txt
N-Triples: 831-1.0054767-rdf-ntriples.txt
Original Record: 831-1.0054767-source.json
Full Text
831-1.0054767-fulltext.txt
Citation
831-1.0054767.ris

Full Text

CAUSAL ATTRIBUTIONS A N D THE SEARCH FOR A SENSE OF PURPOSE IN W O M E N WITH INFLAMMATORY ARTHRITIS by  V A U G H A N MILLER B.A., Simon Fraser University, 1983  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS  in THE FACULTY OF EDUCATION Department of Counselling Psychology We accept this thesis as conforming to the required standard  T H E UNIVERSITY O F BRITISH C O L U M B I A J u l y , 1995 © Vaughan Miller,  1995  In  presenting  degree  at  this  the  thesis  in  partial  fulfilment  of  University  of  British  Columbia,  I agree that the  freely available for reference copying  of  department publication  this or  thesis by  of this  for  his  her  Department of  Date  DE-6 (2/88)  Sgpy-gmr^/  Columbia  In  f  requirements  agree that  granted  It  is  understood  not  be  an  advanced  permission for  be  gain shall  for  Library shall  may  representatives.  for financial  permission.  The University of British Vancouver, Canada  I further  scholarly purposes  or  thesis  and study.  the  by  the that  head  make  it  extensive of  copying  my or  allowed without my written  11  ABSTRACT T h i s study sought t o understand the ways i n which women w i t h inflammatory a r t h r i t i s , arthritis  including  rheumatoid  (RA), j u v e n i l e rheumatoid a r t h r i t i s  and p s o r i a t i c a r t h r i t i s  (PA), developed t h e i r  (JRA), own  c a u s a l models over the course of t h e i r i l l n e s s , and the ways i n which the elements of these c a u s a l models i n f l u e n c e d the way p a t i e n t s "why  they l i v e t h e i r l i v e s .  By a s k i n g  do you t h i n k you got a r t h r i t i s ? "  and by  t r a c i n g the route these p a t i e n t s took i n a r r i v i n g a t t h e i r c a u s a l c o n c l u s i o n s , the world views of the coi n v e s t i g a t o r s were r e v e a l e d , t o some e x t e n t , as were the ways i n which these world views had been m o d i f i e d i n o r d e r t o make sense of c h r o n i c i l l n e s s . T h i s study i n c l u d e d 12 c o - i n v e s t i g a t o r s , and a q u a l i t a t i v e approach.  Repeated  took  i n - d e p t h , open-ended  i n t e r v i e w s were conducted w i t h each c o - i n v e s t i g a t o r , and data i s presented here i n the form of l i f e schemes. Data a n a l y s i s i n v o l v e d an examination of  similarities  and d i f f e r e n c e s a c r o s s s t o r i e s , and a d e t e r m i n a t i o n o f the k i n d s of events t h a t i n f l u e n c e the f o r m a t i o n of causal conclusions. T h i s study found t h a t the c a u s a l models of the coi n v e s t i g a t o r s developed i n a f a i r l y t y p i c a l manner, starting f i r s t  w i t h p h y s i c a l causes, then expanding t o  iii i n c o r p o r a t e p s y c h o l o g i c a l causes, then expanding further to a consideration of e x i s t e n t i a l A general  explanations.  s t o r y was w r i t t e n t o s y n t h e s i z e the  i n f o r m a t i o n , and t o show t h e o v e r a l l p a t t e r n o f development o f t h e c a u s a l models.  Within t h e g e n e r a l  s t o r y d i f f e r e n c e s a c r o s s c a u s a l models a r e h i g h l i g h t e d , as a r e the d i f f e r e n t meanings assigned  t o the same  c a u s a l a t t r i b u t i o n by d i f f e r e n t c o - i n v e s t i g a t o r s .  iv Table o f Contents Abstract  i i  Table o f contents  iv  Acknowledgements  v i i  CHAPTER I - INTRODUCTION  1  Purpose o f t h e Study  3  D e f i n i t i o n o f Terms Used..  4  Strengths and L i m i t a t i o n s  5  S i g n i f i c a n c e o f t h e Study..  7  Personal Perspectives  9  CHAPTER I I - LITERATURE REVIEW  11  Coping w i t h Rheumatoid A r t h r i t i s  12  Causal A t t r i b u t i o n s f o r D i s a b i l i t y and I l l n e s s  16  I l l n e s s N a r r a t i v e s and Causal A t t r i b u t i o n  28  L i f e Schemes and t h e Search f o r Meaning..  32  Assumptions  36  Summary  . .  CHAPTER I I I - METHODOLOGY  37 39  Rationale  39  Co-investigators  43  R a t i o n a l e f o r i n c l u d i n g o n l y women i n t h e study  48  Data C o l l e c t i o n  49  Data A n a l y s i s  54  Summary  58  CHAPTER IV: RESULTS - THE LIFE SCHEMES Diana  .  60 60  V  Marlene  68  Sophie  76  Tamar a  83  Gwen  93  Madeleine  101  Stacey  108  Caroline  .117  Lorna  123  Marilyn  131  Jess  135  Robin  144  CHAPTER V: THE GENERAL STORY  156  Overview  156  In the b e g i n n i n g : A focus on t h e p h y s i c a l  160  E x t e r n a l causes  162  Constitutional  162  The way you a r e  163  What you a r e doing  163  In t h e middle: The  i n c o r p o r a t i o n o f s t r e s s i n t o t h e c a u s a l model....164  Towards the end: A c o n s i d e r a t i o n o f t h e metaphysical Influences The  incorporated  i n t o the model  nature o f t h e g e n e r a l  CHAPTER V I : DISCUSSION Summary o f t h e f i n d i n g s  story  167 ..171 174 176 177  vi The  l i f e scheme framework and t h e study's  findings...178  Implications f o r counselling....  182  L i m i t a t i o n s o f the study  184  Implications f o r further research...  185  A  footnote:  What t h e medical p r o f e s s i o n says about the e t i o l o g y o f a r t h r i t i s  186  REFERENCES  189  APPENDICES  194  Appendix A: C o - i n v e s t i g a t o r demographics  195  Appendix B: My own s t o r y  196  Appendix C: Interview  protocol  .....218  Appendix D: Sample t i m e l i n e . . .  219  Appendix E: O u t l i n e s o f t h e c a u s a l models  220  Appendix F: Summary o f the causes g i v e n  233  Appendix G: Consent form  236  vii  Acknowledgements I gratefully  acknowledge t h e guidance, i n s p i r a t i o n , and  f a i t h of my t h e s i s s u p e r v i s o r , Dr. B o n i t a Long; her t i r e l e s s d e v o t i o n t o her s t u d e n t s , and t o good r e s e a r c h , i s a c o n s t a n t source of amazement. I acknowledge t h e support o f BC Rehab and t h e A r t h r i t i s S o c i e t y , who gave me p e r m i s s i o n t o i n t e r v i e w t h e i r c l i e n t s . I thank the women who shared t h e i r s t o r i e s w i t h me; w i l l i n g n e s s and t h e i r candour were marvellous  gifts.  their  I. Chapter I : I n t r o d u c t i o n The f e e l i n g t h a t one's l i f e i s meaningful has, a c c o r d i n g t o Thompson and J a n i g i a n (1985), two prerequisites.  F i r s t , one must view the world as a  p l a c e i n which o r d e r p r e v a i l s , i n which the p r i n c i p l e s of cause and e f f e c t are known t o the i n d i v i d u a l t o the extent t h a t he or she can prevent, o r a t l e a s t a n t i c i p a t e , the occurrence of n e g a t i v e events.  Second,  one must have a sense of purpose, a s e t o f g o a l s t h a t can r e a s o n a b l y be r e a l i z e d g i v e n the way  the world i s  p e r c e i v e d t o work. The onset of a d i s a b l i n g d i s e a s e such as rheumatoid a r t h r i t i s  (RA) can s t r i p the i n d i v i d u a l of a  sense of meaningfulness.  The i n e x p l i c a b l e i n t r u s i o n o f  RA throws the i n d i v i d u a l i n t o chaos, not o n l y i n terms of h i s o r her day-to-day e x i s t e n c e , but a l s o i n terms of the world view from which he or she o p e r a t e s .  As  Bury (1982) s t a t e s , the onset of RA i m p l i e s "a x  premature  ageing' f o r the i n d i v i d u a l .  As such i t  mark[s] a b i o g r a p h i c a l s h i f t from a p e r c e i v e d  normal  t r a j e c t o r y through r e l a t i v e l y p r e d i c t a b l e c h r o n o l o g i c a l s t e p s , t o one fundamentally abnormal" people, a t l e a s t i n mainstream  (p. 173).  North American  Most  culture,  espouse a world view c h a r a c t e r i z e d by an o v e r e s t i m a t i o n of the j u s t n e s s , p r e d i c t a b i l i t y , and c o n t r o l l a b i l i t y of l i f e ' s events (Lerner, 1980), and t h i s may  prove  f u n c t i o n a l most of the time, and f o r most people, but  2 u n s a t i s f a c t o r y i n the f a c e of an unexpected event.  Unable t o d e t e c t congruence  negative  between the event  of RA and a world view t h a t d i s a l l o w s u n p r e d i c t a b l y , the RA p a t i e n t i s l e f t w i t h two c h o i c e s , t o r e c o n s t r u e the event, or t o r e c o n s t r u c t t h e i r world view t o accommodate the occurrence of One way  RA.  t o get a sense of the way  patients f i t  t h e i r i l l n e s s i n t o t h e i r world views i s t o e x p l o r e t h e i r causal attributions.  By a s k i n g p a t i e n t s "why  people s u f f e r ? " , and more s p e c i f i c a l l y ,  "why  do  have you  been made t o s u f f e r w i t h a r t h r i t i s ? " , we can begin t o understand how  people r e c o n c i l e s u f f e r i n g w i t h the  j u s t , o r d e r l y world t h a t we want t o b e l i e v e e x i s t s , how  they p l a c e themselves  and  i n the world as they p e r c e i v e  it. Because the c u r r e n t s t a t e of s c i e n t i f i c knowledge about the e t i o l o g y of RA i s such t h a t p r a c t i t i o n e r s can o n l y o f f e r l i m i t e d and incomplete e x p l a n a t i o n s t o t h e i r p a t i e n t s , medical e x p l a n a t i o n s are t y p i c a l l y "supplemented  by, and s e t a g a i n s t , a body of knowledge  and meaning drawn from the i n d i v i d u a l ' s own (Bury, 1982,  p. 181).  biography"  One's biography i n c o r p o r a t e s  elements such as f a m i l y , r e l i g i o u s , s o c i a l ,  and  3  c u l t u r a l i n f l u e n c e s (Kleinman, S e v e r a l c a u s a l hypotheses  1988; W i l l i a m s , 1984).  may be t e n t a t i v e l y formed and  then r e j e c t e d along t h e way as RA p a t i e n t s move through d i f f e r e n t stages of t h e l i f e course (Bury, 1991), and as they attempt t o f i n d a f i t between t h e i r world views and t h e i r  illnesses.  The process of d e v e l o p i n g a c a u s a l e x p l a n a t i o n may occur s i m u l t a n e o u s l y w i t h a reexamination o f t h e path one's l i f e i s t a k i n g .  L i f e g o a l s may be r e a s s e s s e d and  m o d i f i e d i n accordance w i t h the p h y s i c a l imposed by RA and with s h i f t i n g  limitations  priorities.  R e e s t a b l i s h i n g a sense of purpose  f o r o n e s e l f i s an  important t a s k w i t h which RA p a t i e n t s must cope. Purpose of the Study The purpose  of t h i s study i s t o e x p l o r e the c a u s a l  a t t r i b u t i o n s of RA p a t i e n t s and t h e world views i n which these a t t r i b u t i o n s a r e embedded.  In a d d i t i o n , I  address s e v e r a l r e l a t e d sub-problems: 1. What i s t h e process by which c a u s a l c o n c l u s i o n s are reached, and what a r e the key events t h a t f a c i l i t a t e t h i s process?  4 2. How  do s i g n i f i c a n t o t h e r s (e.g., f a m i l y  members, c l o s e f r i e n d s , c l e r g y ) i n f l u e n c e the f o r m a t i o n o f these c o n c l u s i o n s ? 3. How  do people with RA  in their  f i n d a sense of purpose  lives?  In order t o preserve the c o n t e x t s i n which respondents  p l a c e t h e i r experience of RA,  these experiences i n n a r r a t i v e form  I present  (Kleinman,  1988;  M i s h l e r , 1986). D e f i n i t i o n of Terms Used In the present study, i t i s e s p e c i a l l y  important  t o c l e a r l y s t a t e a d e f i n i t i o n of a t t r i b u t i o n because the way  I use the word " a t t r i b u t i o n " i s d i s t i n c t  the way  i t i s commonly used i n psychology.  t h i s word, I r e t u r n t o the o r i g i n a l  from  In adopting  dictionary  d e f i n i t i o n of " c a u s a l e x p l a n a t i o n " ( S t i e n , 1983), and then widen my  focus t o i n c l u d e p h i l o s o p h i c a l or  e x i s t e n t i a l e x p l a n a t i o n s as w e l l .  In a d d i t i o n t o  c o n s i d e r i n g i n t e r n a l and e x t e r n a l f a c t o r s t h a t people p e r c e i v e as having an i n f l u e n c e on the course of the d i s e a s e , I c o n s i d e r the e x p l a n a t i o n s people c o n s t r u c t i n order t o understand why place.  they became i l l  i n the  first  5  When I r e f e r t o the c o p i n g s t r a t e g i e s used by  RA  p a t i e n t s , I am not u s i n g the word "coping" t o mean " a d j u s t i n g " or "adapting".  Rather,  d e f i n i t i o n of coping proposed (1984):  I use  the  by Lazarus and Folkman  the " c o n s t a n t l y changing c o g n i t i v e and  b e h a v i o r a l e f f o r t s t o manage s p e c i f i c e x t e r n a l and/or i n t e r n a l demands t h a t are a p p r a i s e d as t a x i n g or exceeding the r e s o u r c e s of the person"  (p. 141).  This  d e f i n i t i o n i s p r o c e s s - o r i e n t e d , as opposed t o t r a i t o r i e n t e d , and i s c o n t e x t - s p e c i f i c .  In t h i s study, I  seek t o a s c e r t a i n the ways i n which RA p a t i e n t s cope s p e c i f i c a l l y with the t a s k of f i n d i n g a purpose i n life.  T h i s i n v o l v e s an e x p l o r a t i o n of the a s p i r a t i o n s  each p a t i e n t had b e f o r e the onset of RA,  and  the  process by which these a s p i r a t i o n s were r e e v a l u a t e d , and m o d i f i e d as the d i s e a s e progressed. Strengths and L i m i t a t i o n s There are both s t r e n g t h s and l i m i t a t i o n s t o any study t h a t p r e s e n t s data i n n a r r a t i v e form. Bousfield  Viney  and  (1991) e v a l u a t e d the u s e f u l n e s s of n a r r a t i v e  a n a l y s i s i n understanding the experiences of AIDSa f f e c t e d men.  Advantages i n c l u d e the f a c t t h a t  n a r r a t i v e s come c l o s e r than o t h e r methods of data  6 c o l l e c t i o n and p r e s e n t a t i o n t o conveying experiences  o f respondents.  t h e unique  N a r r a t i v e s are r e s p e c t f u l  of respondents, t r e a t i n g as important  not o n l y the  d e t a i l s and t h e nuances c o n t a i n e d w i t h i n t h e i r  stories,  but t h e ways i n which they t e l l t h e i r s t o r i e s as w e l l . The very s t r e n g t h o f t h i s approach i s a l s o i t s weakness; w h i l e i t allows f o r very f u l l  and r i c h  p o r t r a i t s of i n d i v i d u a l s , i t disallows the formulation of conclusions that w i l l generalize t o a population. F u r t h e r , n a r r a t i v e s cannot conform t o the same standards  o f o b j e c t i v i t y demanded o f q u a n t i t a t i v e  r e s e a r c h ; n a r r a t i v e s a r e , i n a very r e a l sense, c o l l a b o r a t i o n s between respondents and t h e i n v e s t i g a t o r to  whom they t e l l t h e i r s t o r i e s ; they a r e  i n t e r p r e t a t i o n s o f the t e l l e r s ' s t o r i e s , and as such they i n e v i t a b l y r e f l e c t t h e b i a s e s and assumptions o f the i n v e s t i g a t o r ( M i s h l e r , 1986; W i l l i a m s ,  1984).  As M i s h l e r (1986) s t a t e s , "the meanings o f q u e s t i o n s and responses a r e c o n t e x t u a l l y grounded and j o i n t l y c o n s t r u c t e d by i n t e r v i e w e r and respondent" (p. 34). S i g n i f i c a n c e o f t h e Study T h i s study may have c l i n i c a l an understanding  implications.  First,  o f the world views o f RA p a t i e n t s , and  7 the  c a u s a l hypotheses t h a t have sprung from these world  views, may h e l p medical c l i n i c i a n s t o g i v e more e f f e c t i v e treatment t o t h e i r p a t i e n t s .  Kleinman  (1988)  advocates an approach t o t h e p r a c t i c e o f medicine t h a t i s "captured by the words empathic translation,  and interpretation"  listening, (p. 228); he says t h a t  these a r e t h e s k i l l s o f t h e c l i n i c i a n who t r e a t s illness,  the l i v e d e x p e r i e n c e o f d i s o r d e r e d p h y s i o l o g y ,  as opposed t o j u s t d i s e a s e . of  Although, the f u l l  range  p e r s p e c t i v e s taken by RA p a t i e n t s cannot p o s s i b l y be  r e p r e s e n t e d here, perhaps an i n d i c a t i o n o f t h e d i v e r s i t y o f these p e r s p e c t i v e s might persuade medical p r a c t i t i o n e r s t o s e t a s i d e some o f t h e i r assumptions i n the  i n t e r e s t of t h e i r  patients.  Second, p s y c h o t h e r a p i s t s working w i t h RA p a t i e n t s w i l l be more e f f e c t i v e i f they a r e s e n s i t i v e t o the e x i s t e n t i a l c r i s i s o f t e n provoked by the d i s e a s e . They might choose t o use some l o g o t h e r a p e u t i c , meaningbased, o r c o g n i t i v e r e f r a m i n g i n t e r v e n t i o n s t o facilitate  t h e r e s t o r a t i o n o f a sense of o r d e r and  purpose a f t e r the onset o f RA. Russell  (1991) p o i n t s t o t h e importance o f  n a r r a t i v e i n c o g n i t i v e therapy.  He espouses the  8 n a r r a t i v e paradigm t h a t assumes t h a t t o e x i s t as a human b e i n g i s t o p e r c e i v e one's l i f e as a s t o r y l a t e r to  be t o l d .  I f a c l i e n t has a d e f e c t i v e o r  d y s f u n c t i o n a l view of h i s o r her r e l a t i o n t o the world, the t a s k of the c o g n i t i v e t h e r a p i s t i s t o a s s i s t c l i e n t t o c o n s t r u c t a new narrative.  T h i s new  the  and more f u n c t i o n a l p e r s o n a l  p e r s o n a l n a r r a t i v e competes with,  and e v e n t u a l l y subsumes, the o l d p e r s o n a l n a r r a t i v e . Reminiscence, or l i f e review, i s g a i n i n g r e s p e c t a b i l i t y as a t h e r a p e u t i c method. Haight reviewed the l i t e r a t u r e on t h e r a p e u t i c from 1960-1990 and  (1991)  reminiscence  found t h a t of 97 p u b l i s h e d  articles,  o n l y 7 r e p o r t e d negative outcomes; the remainder were e i t h e r p o s i t i v e or n o n - e v a l u a t i v e . Strassberg reminiscence  Poulton  and  (1986) l i s t the adaptive consequences of as the r e s o l u t i o n of  previously-unresolved  c o n f l i c t s , the maintenance of g o a l - d i r e c t e d behavior, and the maintenance of f e e l i n g s of s e l f - e s t e e m personal The  and  significance. s t o r i e s c o n t a i n e d w i t h i n my  v a l u e t o the p s y c h o t h e r a p i s t ,  study may  be  not o n l y because of  i n s i g h t they might impart w i t h r e s p e c t t o the e x i s t e n t i a l i s s u e s t h a t f a c e RA p a t i e n t s , but a l s o  of the  9  because they w i l l a l l o w him o r her t o witness t h e s t r u g g l e toward wholeness embedded i n t h e n a r r a t i v e , and t h e ways i n which t h e n a r r a t i v e f u n c t i o n s as a symbolic f i e l d i n which t o enact and r e s o l v e t h i s struggle. Personal Perspectives I have had RA f o r 2 5 y e a r s , and i n t h a t time I have spent s e v e r a l lengthy p e r i o d s i n h o s p i t a l , i n c l u d i n g one p e r i o d o f almost two years when I was an adolescent.  During these h o s p i t a l i z a t i o n s , I met  hundreds o f other people w i t h RA, many o f whom were h o s p i t a l roommates, and I r e c a l l many a n i g h t l y i n g i n bed and t a l k i n g t o people, i n t h e dark, about t h e s t r u g g l e t o come t o terms w i t h t h e d i s e a s e . I l l n e s s does not r e s p e c t c u l t u r a l , e t h n i c , o r socioeconomic d i f f e r e n c e s i n people, and t h e e d u c a t i o n I r e c e i v e d i n h o s p i t a l f a r surpassed a n y t h i n g I might have l e a r n e d i n j u n i o r h i g h s c h o o l .  I was f a s c i n a t e d  t o e x p l o r e with people t h e v a r i o u s b e l i e f systems from which they operated, each one g r a p p l i n g w i t h t h e same t a s k o f making sense o f a seemingly s e n s e l e s s a f f l i c t i o n , and each doing so i n h i s o r her own way. was a l s o witness t o t h e problems t h a t arose when  I  10 p a t i e n t s ' b e l i e f systems were incongruous w i t h those of medical p e r s o n n e l . Research  shows t h a t t h e f u n c t i o n a l c a p a c i t y of RA  p a t i e n t s o f t e n has l i t t l e t o do w i t h t h e s e v e r i t y of t h e i r disease.  My own o b s e r v a t i o n s support  empirical finding.  this  I t has always seemed t o me t h a t  one's p h i l o s o p h i c a l outlook has a g r e a t e f f e c t on how w e l l people d e a l w i t h t h e i r i l l n e s s .  T h i s study i s an  outgrowth of years of i n f o r m a l o b s e r v a t i o n .  11 Chapter The  I I : L i t e r a t u r e Review  l a s t few decades have seen a barrage  of  r e s e a r c h s t u d i e s t h a t d e a l w i t h p s y c h o s o c i a l a s p e c t s of rheumatoid a r t h r i t i s at  (RA).  These s t u d i e s have looked  the p h y s i c a l , s o c i a l , and p s y c h o l o g i c a l f a c t o r s  a s s o c i a t e d w i t h coping and with adjustment i n RA patients.  The t r e n d i n t h i s r e s e a r c h has been toward  focused q u a n t i t a t i v e i n q u i r y , and away from h o l i s t i c examination  of the experience of  Although  RA.  t h e r e have been numerous s t u d i e s t h a t  have examined the e x i s t e n t i a l q u e s t i o n s , the "why of  me?"  i l l n e s s , t h a t a r i s e f o r people with h e a l t h problems  such as s p i n a l c o r d i n j u r y and cancer Wortman, 1977;  Gotay, 1985;  1985), t h e r e i s very l i t t l e  (e.g., Bulman &  Timko & Janoff-Bulman, r e s e a r c h t h a t focuses  on  these q u e s t i o n s as d e a l t w i t h by RA p a t i e n t s . The  search f o r meaning o f t e n provoked by a  d i s a b l i n g i n j u r y o r i l l n e s s i s a two-pronged s e a r c h . F i r s t , one must a d j u s t one's p e r c e p t i o n s of the or of the world and how order i s r e s t o r e d . modify one's l i f e  event,  i t operates so t h a t a sense o f  Second, one must reexamine and  g o a l s i n order t o achieve a sense of  purpose (Thompson & J a n i g i a n , 1988).  12 E x i s t i n g research  i n t h e areas o f coping w i t h RA,  c a u s a l a t t r i b u t i o n s f o r i l l n e s s and i n j u r y , and the search  f o r meaning i s reviewed here.  Coping with Rheumatoid A r t h r i t i s RA i s a d i s e a s e c h a r a c t e r i z e d by damage t o the j o i n t s ; the s e v e r i t y o f the damage and i t s consequent d i s a b i l i t y v a r i e s w i d e l y between i n d i v i d u a l s . researchers  Many  have noted t h a t , f o r many p a t i e n t s , t h e  s e v e r i t y o f the p h y s i c a l damage bears  little  r e l a t i o n s h i p t o f u n c t i o n a l impairment (Genest, 1983; Moos & Solomon, 1964; M o s c o v i t z , 1971), where f u n c t i o n a l impairment i s d e f i n e d b r o a d l y in  as d i s r u p t i o n  t h e c a p a c i t y t o f u n c t i o n i n a l l aspects o f d a i l y  life,  i n work, f a m i l y and s o c i a l r o l e s , and i n one's  sense o f emotional w e l l - b e i n g  (Genest, 1983).  This  f i n d i n g has prompted a search  f o r the p s y c h o l o g i c a l  v a r i a b l e s t h a t mediate between p h y s i c a l impairment and functional capacity. considered  Many i n v e s t i g a t o r s have  the ways i n which p a t i e n t s cope a c r i t i c a l  determinant o f f u n c t i o n a l s t a t u s , n o t i n g t h a t some ways of coping  a r e adaptive,  Wallston,  1992).  and o t h e r s maladaptive (Smith &  13 Over the l a s t s e v e r a l y e a r s , numerous s t u d i e s have i n v e s t i g a t e d the r e l a t i o n s h i p s between c o p i n g antecedents ( i . e . , p a t i e n t s ' a p p r a i s a l s o f t h e i r s i t u a t i o n s as determined by f u n c t i o n a l s t a t u s , and by b e l i e f s regarding resources),  a b i l i t i e s and i n t e r n a l and  external  and the employment of p a r t i c u l a r c o p i n g  s t r a t e g i e s such as d i s t r a c t i o n , i n f o r m a t i o n - s e e k i n g , s e l f - b l a m e , and downward comparison (Zautra 1992).  & Manne,  Other s t u d i e s have looked a t the r e l a t i o n s h i p s  between c o p i n g s t r a t e g i e s and v a r i o u s such as h e a l t h s t a t u s , p s y c h o l o g i c a l s e v e r i t y of p a i n  (Zautra  outcome measures adjustment, and  & Manne, 1992).  R e c e n t l y , i n an e f f o r t t o i n t e g r a t e the f i n d i n g s of p r e v i o u s s t u d i e s , Smith and W a l l s t o n (1992) conducted a l o n g i t u d i n a l study t h a t sought t o incorporate  coping antecedents, c o p i n g s t r a t e g i e s , and  outcome measures i n t o the s t r e s s and coping framework proposed by Lazarus and Folkman (1984).  In doing so,  they c o n s i d e r e d the c o n t r i b u t i o n o f f a c t o r s from the physical, psychological, and  and s o c i a l domains t o c o p i n g ,  u l t i m a t e l y to well-being,  i n RA  patients.  The work of Smith and W a l l s t o n (1992) i s a f i r s t step i n e s t a b l i s h i n g causal  d i r e c t i o n i n data t h a t  14 p r e v i o u s r e s e a r c h has shown t o be c o r r e l a t e d .  However,  d e s p i t e the l a r g e number of s u b j e c t s , the e i g h t waves of data c o l l e c t i o n over a f o u r - y e a r p e r i o d , and  the  complex s t a t i s t i c a l a n a l y s e s , t h i s study has some shortcomings.  S e v e r a l of the measures used by  the  i n v e s t i g a t o r s give only s u p e r f i c i a l consideration to v e r y complex v a r i a b l e s .  For example, the i n v e s t i g a t o r s  used a 7-item measure, a p p a r e n t l y of t h e i r  own  c o n s t r u c t i o n , t o gather data about p s y c h o s o c i a l impairment; t h i s measure asked RA p a t i e n t s t o assess the degree t o which RA had  i n t e r f e r e d i n each of seven  areas: f a m i l y r e l a t i o n s h i p s , hobbies activities,  and s p o r t s , s e x u a l  s l e e p i n g , s o c i a l a c t i v i t i e s , working,  c o m f o r t i n g and h e l p i n g o t h e r s .  The complexity  d i v e r s i t y of these areas can h a r d l y be  and  and  addressed  adequately by a measure such as the one used i n t h i s study.  The r e s e a r c h e r s r e p o r t the i n t e r n a l  consistency  of the measure i n order t o s u b s t a n t i a t e i t s psychometric  p r o p e r t i e s , but they do not  provide  support f o r i t s v a l i d i t y . Another weakness i n the study i s i t s narrow focus on p a i n i n the coping measure.  Smith and  Wallston  (1992) ask t h e i r readers t o b e l i e v e t h a t the way  RA  15 p a t i e n t s cope s p e c i f i c a l l y w i t h t h e i r p a i n mediates between s e v e r a l coping antecedents r e l a t e d t o p a i n (e.g., l i f e  only  indirectly  s a t i s f a c t i o n and d e p r e s s i v e  symptomotology) and h e a l t h outcomes. My  s t r o n g e s t r e s e r v a t i o n about t h i s  study,  however, l i e s i n the f a c t t h a t , as a member of the p o p u l a t i o n t o which the f i n d i n g s are intended t o apply, I f e e l t h a t the study i s so a b s t r a c t e d from experience of RA p a t i e n t s , so absorbed  the  i n i t s own  m a n i p u l a t i o n s of data and complicated path a n a l y s e s , t h a t i t a c t u a l l y says very l i t t l e  about the l i v e s of  the people i t has s e t out t o understand.  T h i s study  has convinced me of the need t o r e t r e a t from the path of  i n c r e a s i n g l y complex q u a n t i t a t i v e r e s e a r c h on  RA  patients. In  a d d i t i o n t o my  r e s e r v a t i o n s about the  m e t h o d o l o g i c a l d i r e c t i o n s r e s e a r c h on RA p a t i e n t s has taken, I have n o t i c e d an omission i n the  literature.  To date t h e r e i s v i r t u a l l y no r e s e a r c h t h a t examines the i n f l u e n c e of the p h i l o s o p h i c a l b e l i e f s of p a t i e n t s on coping and on adjustment.  Researchers  l a r g e l y i g n o r e d the " n o o l o g i c a l dimension", Frankl  RA have  as V i k t o r  (1969) c a l l s i t , the a c t i v e search f o r meaning  16 t h a t people tend t o engage i n when c o n f r o n t e d with s e r i o u s i l l n e s s and d i s a b i l i t y 1985;  Kleinman, 1988;  (Janoff-Bulman  & Timko,  Wong & Weiner, 1981).  Causal A t t r i b u t i o n s f o r I l l n e s s and D i s a b i l i t y One  aspect o f t h e search f o r meaning i n v o l v e s t h e  c o n c l u s i o n s p a t i e n t s reach t o the q u e s t i o n "why me?", the problem o f bafflement  (Kleinman,  the language o f psychology,  1988), o r , t o use  the causal a t t r i b u t i o n s  people make i n order t o e x p l a i n why they have been injured o r a f f l i c t e d with disease. A f f l e c k , P f e i f f e r , Tennen, and F i f i e l d  (1987)  d e a l t somewhat s u p e r f i c i a l l y w i t h RA p a t i e n t s ' p h i l o s o p h i c a l b e l i e f s about the cause o f t h e i r i n a l a r g e r study o f p a t i e n t s ' e t i o l o g i c a l  illness  theories.  They posed the q u e s t i o n , "Some people who become seriously i l l me?'.  say they have asked the q u e s t i o n *Why  Others say they have never asked themselves  question.  this  D i d you ever f i n d y o u r s e l f a s k i n g *Why am I  the one t o have t h i s c o n d i t i o n i n s t e a d o f someone else?'.  I f so, do you s t i l l  f i n d yourself asking t h i s  q u e s t i o n o r have you found an answer t o i t ? " (p. 928929).  Responses t o t h i s q u e s t i o n were a s s i g n e d t o  c a t e g o r i e s such as "Fate", "Purpose f o r the  illness",  17 "Never asked Why me?", x  The  and  "Still  ask and no answer".  r e s e a r c h e r s o f f e r l i t t l e d i s c u s s i o n or e l a b o r a t i o n  on these c a t e g o r i e s , except t o say t h a t p a t i e n t s continue  t o search f o r a c a u s a l e x p l a n a t i o n  who  report  g r e a t e r f u n c t i o n a l problems, and g r e a t e r h e l p l e s s n e s s , and are r a t e d by h e a l t h care p r o v i d e r s as e x h i b i t i n g l e s s p o s i t i v e p s y c h o s o c i a l adjustment. There have been a number of s t u d i e s of c a u s a l a t t r i b u t i o n s t h a t have used samples drawn from o t h e r patient populations.  For example, r e s e a r c h e r s have  looked a t the a t t r i b u t i o n s of people who s p i n a l cord i n j u r i e s .  have s u f f e r e d  Bulman and Wortman (1977)  conducted e x t e n s i v e i n t e r v i e w s with 29 s p i n a l c o r d p a t i e n t s , chosen f o r the study because chance seemed t o d e f i n e the s e l e c t i v e i n c i d e n c e of t h e i r i n j u r i e s ,  and  found t h a t a l l of t h e i r respondents had posed the question  "why  me?".  F u r t h e r , they found t h a t 28 of  29 had developed s p e c i f i c hypotheses t o e x p l a i n  the  why  t h e i r a c c i d e n t s had happened t o them. Thematic a n a l y s i s y i e l d e d s i x c a t e g o r i e s of e x p l a n a t i o n s : p r o b a b i l i t y , chance, f a t e , d i v i n e p l a n , p o s i t i v e r e i n t e r p r e t a t i o n , and deservedness.  When the  r e s e a r c h e r s compared the c a u s a l e x p l a n a t i o n s  o f f e r e d by  18 the respondents with coping s c o r e s , they found t h a t c e r t a i n a t t r i b u t i o n s were p r e d i c t i v e of poor c o p i n g whereas o t h e r a t t r i b u t i o n s were p r e d i c t i v e of good coping. A major l i m i t a t i o n of t h i s study i s t o be found i n the coping measure.  For each respondent, a nurse and a  s o c i a l worker f a m i l i a r with the case marked a 16-point s c a l e with endpoints of "coped very p o o r l y " and extremely w e l l " . r a t e r s what was  "coped  When the r e s e a r c h e r s were asked by meant by "coped",  the r e s e a r c h e r s  p r o v i d e d suggestions o f f e r e d by o t h e r r a t e r s .  As i s  t r u e i n so much of the l i t e r a t u r e , the word "coped" i s used without an o p e r a t i o n a l d e f i n i t i o n ; here i t seems t o be synonymous with "accepted", "adapted",  or  " a d j u s t e d " , i n themselves vague terms. Bulman and Wortman's (1977) study lends support t o the J u s t World Hypothesis proposed by L e r n e r  (1980).  T h i s h y p o t h e s i s i s based on the n o t i o n t h a t the world i s a j u s t p l a c e , t h a t people get what they deserve deserve what they g e t .  L e r n e r remarks,  and  "people want t o  and have t o b e l i e v e they l i v e i n a j u s t world so t h a t they can go about t h e i r d a i l y l i v e s w i t h a sense of  19 t r u s t , hope and c o n f i d e n c e i n the f u t u r e " (Lerner, 1980,  p. 14). Most of the respondents i n the Bulman and Wortman  (1977) study developed hypotheses World views.  Seven respondents  c o n s i s t e n t with J u s t  suggested  p r e d e t e r m i n a t i o n as an e x p l a n a t i o n f o r t h e i r disabilities:  "these t h i n g s are always planned b e f o r e  your time by a Supreme Power" (Bulman & Wortman, p. 359).  In more f u l l y - d e v e l o p e d hypotheses,  10 people  e x p l a i n e d t h a t God must have had a reason t o a l l o w or t o cause the a c c i d e n t s .  Although God's d e s i g n might  not be r e a d i l y apparent, s u r e l y t h e r e are b e n e f i t s t o be d e r i v e d .  For example, one i n d i v i d u a l  responded,  " i t ' s a l e a r n i n g e x p e r i e n c e ; I see God's t r y i n g t o put me  i n s i t u a t i o n s , h e l p me  and a l s o how Wortman, p. Six  l e a r n about Him and  myself  I can h e l p o t h e r people" (Bulman & 358).  respondents r e e v a l u a t e d t h e i r circumstances as  p o s i t i v e , s t r e s s i n g t h a t the b e n e f i t s of t h e i r s i t u a t i o n s outweighed  the n e g a t i v e  new  consequences:  Since the a c c i d e n t , I've l e a r n e d an awful l o t about myself and o t h e r people. You meet d i f f e r e n t people i n a hard-up s i t u a t i o n t h a t I never would have met. I was l e a d i n g a s h e l t e r e d l i f e , I suppose, compared t o what i t i s now. Now I'm j u s t  20 i n a s i t u a t i o n which I enjoy (Bulman & Wortman, 1977, p. 359). These i n d i v i d u a l s were a b l e t o h o l d on t o both t h e i r s e l f - e s t e e m and t h e i r J u s t World views by r e c o n s t r u i n g what might appear t r a g i c t o o t h e r s as p o s i t i v e . Two  respondents e x p l a i n e d t h e i r f a t e s i n terms of  deservedness.  These people r e c a l l e d t h e i r past  b e h a v i o r s and b e l i e v e d t h a t t h e i r a c c i d e n t s were f a i r and l o g i c a l outcomes of t h e i r own wrongdoing: " i f do wrong, you reap what you sow"  you  (Bulman & Wortman,  1977, p. 360). Four of the respondents a t t r i b u t e d t h e i r  accidents  t o p r o b a b i l i t y , and t h r e e o t h e r s s o l e l y t o chance, and these a t t r i b u t i o n s would seems t o c o n t r a d i c t the J u s t World H y p o t h e s i s .  But as Thompson and J a n i g i a n  (1988)  remark: On the s u r f a c e i t may appear t h a t o r d e r l i n e s s i s d i a m e t r i c a l l y opposed t o chance o r p r o b a b i l i t y . However, a b e l i e f t h a t s p e c i f i c events happen a c c o r d i n g t o chance does not mean t h a t t h e r e i s not an u n d e r l y i n g order t o the world. One might engage i n a c e r t a i n a c t i o n w i t h the u n d e r s t a n d i n g that there i s a high r i s k of i n j u r y . A resultant a c c i d e n t would f o l l o w o r d e r l y from the b e l i e f t h a t c e r t a i n a c t i o n s are more r i s k y than o t h e r s and t h a t one "takes one's chances" by engaging i n them (p. 263).  21 Numerous s t u d i e s c i t e d by Lerner (1980) i n d i c a t e t h a t , when misfortune s t r i k e s , people tend t o engage i n s e l f - b l a m e t o an extent t h a t f a r exceeds t h e i r o b j e c t i v e blameworthiness.  own  This observation holds  t r u e i n the Bulman and Wortman (1977) study,  and,  c o n s i s t e n t w i t h o t h e r s t u d i e s c i t e d by L e r n e r , respondents  who  engaged i n s e l f - b l a m e were b e t t e r  a d j u s t e d than those who  blamed o t h e r s .  Bulman and  Wortman s p e c u l a t e t h a t perhaps j u s t i c e and i s s u e s might e x p l a i n these f i n d i n g s . who  blamed themselves  control  That i s , p a t i e n t s  f o r t h e i r i n j u r i e s were a b l e t o  see them as f a i r and l o g i c a l outcomes t o t h e i r a c t i o n s , whereas those who  blamed o t h e r s were unable t o p l a c e  t h e i r i n j u r i e s i n the c o n t e x t of a j u s t and  orderly  world. The work of Bulman and Wortman (1977) i l l u s t r a t e s s e v e r a l p o i n t s r e l a t e d t o the J u s t World Hypothesis. First,  i t shows the e x t r a o r d i n a r y need people have t o  see the world as o r d e r l y , and t o see c a t a s t r o p h i c events as p r e d i c t a b l e .  Second, i t demonstrates the  need we have t o imbue the events of our l i v e s with meaning.  F i n a l l y , i t shows the many ways i n which  22 people c o g n i t i v e l y r e c o n s t r u c t events so as t o a l i g n them w i t h J u s t World  views.  Researchers who have attempted  to r e p l i c a t e the  work o f Bulman and Wortman (1977) have tended t o focus p r i m a r i l y on the p s y c h o l o g i c a l dimension, r a t h e r than the n o o l o g i c a l dimension. Steil  For example, Sholomskas and  (1990) d i v i d e d t h e i r respondents i n t o two groups,  those who engaged i n s e l f - b l a m e , and those who engaged i n other-blame.  In d o i n g so, they stayed w i t h i n the  arena o f i n t e r n a l and e x t e r n a l l o c u s o f c o n t r o l , a d i s t i n c t l y p s y c h o l o g i c a l domain t h a t has a l r e a d y been addressed i n the a r t h r i t i s l i t e r a t u r e  (Zautra & Manne,  1992). Gotay (1985) asked 31 cancer p a t i e n t s , and 20 o f t h e i r mates, t o address the problem o f b a f f l e m e n t , and attempted  t o determine whether c e r t a i n types o f c a u s a l  a t t r i b u t i o n s were p r e d i c t i v e o f adjustment.  Two  methods were used t o c o l l e c t data on c a u s a l attributions.  F i r s t , cancer p a t i e n t s and t h e i r mates  were asked the open-ended q u e s t i o n , "with r e s p e c t t o your h e a l t h problem, have you ever asked t h e q u e s t i o n *why me?'  How d i d you answer i t ? " .  Responses were  c o n t e n t - a n a l y z e d and coded a c c o r d i n g t o the  23  classification (1977).  scheme developed by Bulman and Wortman  Second, respondents were g i v e n a s t r u c t u r e d  q u e s t i o n n a i r e t h a t read " I ' d l i k e t o know how  much you  blame each o f the f o l l o w i n g f a c t o r s f o r your h e a l t h problem. factor.  Please a s s i g n a percentage of blame f o r each I f a g i v e n f a c t o r has no i n f l u e n c e , you  assign i t a zero".  The f o u r f a c t o r s from  may  which  respondents c o u l d choose were " Y o u r s e l f - the k i n d of person you a r e " , "Things you have done", environment  "The  and o t h e r people", and "Chance".  When Gotay examined the data e l i c i t e d by these two methods, she found c o n s i d e r a b l e d i s c r e p a n c y .  Although  some respondents were unable t o answer the open-ended q u e s t i o n posed i n the i n t e r v i e w , none were unable t o complete the q u e s t i o n n a i r e .  However, the  q u e s t i o n n a i r e ' s format p r e c l u d e d c e r t a i n types o f responses and the i n v e s t i g a t o r found i t necessary t o supplement  i t w i t h a d d i t i o n a l measures, such as a  measure of r e l i g i o s i t y .  Indeed, one o f the more  i n t e r e s t i n g f i n d i n g s of t h i s study i s t h a t the k i n d of c a u s a l q u e s t i o n asked g r e a t l y a f f e c t s the answers obtained.  24 Gotay's (1985) study makes o t h e r important c o n t r i b u t i o n s as w e l l .  Jaber, S t e i n h a r d t ,  and  Trilling  (1991) remark t h a t the f a m i l y i s the most important s o c i o c u l t u r a l context i n which meanings and v a l u e s are learned  (and, I would argue, c o n s t r u c t e d ) ,  and  this  study, by i n c l u d i n g cancer p a t i e n t ' s mates, acknowledges the r o l e of s i g n i f i c a n t o t h e r s i n the c o n s t r u c t i o n of meaning. In a d d i t i o n , Gotay compared the a t t r i b u t i o n s of early-stage  cancer p a t i e n t s  ( i . e . , p a t i e n t s with p r e -  cancerous c o n d i t i o n s , as w e l l as those whose colposcopy i n d i c a t e d t h a t f u r t h e r treatment was t h e i r mates, and the a t t r i b u t i o n s of  necessary)  and  advanced-stage  cancer p a t i e n t s ( i . e . , p a t i e n t s with Stage I I I or Stage IV g y n e c o l o g i c a l  or b r e a s t cancer) and t h e i r mates.  A t t r i b u t i o n s t o the s e l f or t o the p a t i e n t showed a main e f f e c t f o r stage, such t h a t  advanced-stage  p a t i e n t s were more l i k e l y t o say t h a t the i n d i v i d u a l h e r s e l f bore some r e s p o n s i b i l i t y f o r the development of the cancer.  Advanced-stage p a t i e n t s were a l s o more  l i k e l y t o c i t e r e l i g i o u s l y - b a s e d reasons. By comparing the a t t r i b u t i o n s of these two groups, Gotay suggests  25 the p o s s i b i l i t y t h a t a t t r i b u t i o n s change over the course of an  illness.  Timko and Janoff-Bulman  (1985) s t u d i e d b r e a s t  cancer p a t i e n t s i n an e f f o r t t o understand  the  r e l a t i o n s h i p s between c a u s a l a t t r i b u t i o n s , p e r c e i v e d v u l n e r a b i l i t y t o cancer r e c u r r e n c e , and  adjustment.  Respondents were asked t o i n d i c a t e the extent t o which they thought o t h e r people, the environment,  and chance  were r e s p o n s i b l e f o r the development of t h e i r cancer. They were a l s o asked t o i n d i c a t e the extent t o which they thought they had developed cancer because of the k i n d of people they were p h y s i c a l l y , because of the k i n d s of p e r s o n a l i t y they had, and because of t h e i r past b e h a v i o r s .  In a d d i t i o n , respondents  answered  q u e s t i o n s about t h e i r p e r c e i v e d v u l n e r a b i l i t y t o the occurrence and r e c u r r e n c e of cancer. The r e s u l t s of t h i s study i n d i c a t e t h a t t h e r e i s not a d i r e c t l i n k between c a u s a l a t t r i b u t i o n s adjustment;  and  r a t h e r the a t t r i b u t i o n - a d j u s t m e n t  r e l a t i o n s h i p i s mediated  by p e r c e i v e d i n v u l n e r a b i l i t y  and i t s a s s o c i a t e d c o g n i t i o n s . respondents who  For example,  p o i n t e d t o p a s t b e h a v i o r s as c a u s a l i n  t h e i r cancer were b e t t e r a d j u s t e d than respondents  who  26  a t t r i b u t e d t h e i r cancer t o c h a r a c t e r o l o g i c a l f l a w s , o r to others.  Whereas b e h a v i o r s a r e c o n t r o l l a b l e and  m o d i f i a b l e , one's c h a r a c t e r and t h e c h a r a c t e r i s t i c s o f o t h e r s (e.g., t h e genes o f r e l a t i v e s who have passed along v u l n e r a b i l i t y t o cancer) a r e r e l a t i v e l y and u n c o n t r o l l a b l e .  stable  L i k e t h e Bulman and Wortman (1977)  study, t h i s study lends support t o t h e i d e a t h a t  people  who a r e a b l e t o frame t h e i r i l l n e s s as t h e l o g i c a l outcome o f a m o d i f i a b l e b e h a v i o r tend t o be b e t t e r adjusted. A study o f I s r a e l i b r e a s t cancer p a t i e n t s by B a i d e r and S a r e l l  (1983) h i g h l i g h t s t h e e f f e c t o f  c u l t u r e on t h e k i n d s o f a t t r i b u t i o n s p a t i e n t s make. ^ O r i e n t a l ' women (Jews born i n t h e predominantly Moslem c u l t u r e s o f North A f r i c a and t h e Middle East) were l i k e l y t o see t h e i r d i s e a s e as caused by themselves o r o t h e r s , o r as a punishment, whereas Western' women x  (Jews born i n Europe o r t h e Americas)  tended t o e x p l a i n  t h e i r i l l n e s s i n terms o f d i v i n i t y , f a t e , o r chance. The ways i n which these two groups coped d i f f e r e d as well.  The i n v e s t i g a t o r s l a b e l l e d t h e c h a r a c t e r i s t i c  modes o f coping o f t h e *Western' group scientific'  %  rational-  ( i . e . , a c t i v e , s e l f - r e l i a n t ) , and t h e  27 x  O r i e n t a l ' group * n o n - r a t i o n a l , m a g i c a l '  passive, f a t a l i s t i c ) .  (i.e.,  However, the i n v e s t i g a t o r s d i d  not draw e x p l i c i t connections between the c a u s a l a t t r i b u t i o n s of t h e i r respondents, which respondents  and the ways i n  coped.  J e n k i n s and Pargament (1988) s t u d i e d the c o g n i t i v e a p p r a i s a l s of cancer p a t i e n t s and t h e i r r e s u l t s were c o n s i s t e n t w i t h the f i n d i n g s of o t h e r s (e.g., Timko & Janoff-Bulman,  1985)  who  showed t h a t people seek t o  g a i n a sense of p e r s o n a l c o n t r o l over t h r e a t e n i n g events, and t h a t h i g h e r l e v e l s of p e r c e i v e d p e r s o n a l c o n t r o l promote more f a v o r a b l e  adjustment.  They made some o t h e r i n t e r e s t i n g f i n d i n g s as w e l l . For example, they found t h a t " p e r c e i v e d c o n t r o l  over  emotional r e a c t i o n s seems t o be a u s e f u l p r e d i c t o r of p s y c h o s o c i a l competence, d i s t i n c t from p e r c e i v e d c o n t r o l over the events themselves" Pargament, 1988, of  p. 626).  (Jenkins &  This f i n d i n g i s reminiscent  F r a n k l ' s (1969) a s s e r t i o n t h a t , although we can not  always c o n t r o l the events around us, we are f r e e t o choose the stance we take w i t h r e s p e c t t o m i s f o r t u n e . The d e s i g n of t h i s study was  such t h a t  respondents  were a b l e t o e l a b o r a t e on t h e i r b e l i e f s r e g a r d i n g  God-  28  control.  T h e i r remarks tended t o d e s c r i b e an a c t i v e  process of exchange with God,  r a t h e r than a  submission t o an e x t e r n a l f o r c e . expressed the b e l i e f t h a t God e f f o r t s , and  accessing saw  God  worked through t h e i r  and  c o n t r o l from God.  own  physicians.  f a i t h as means of Thus, some respondents,  not as an impersonal e x t e r n a l f o r c e , but as a  being with whom one The  Respondents o f t e n  through the e f f o r t s of t h e i r  They a l s o spoke of prayer  passive  could i n t e r a c t , a c o l l a b o r a t o r .  s u b j e c t of r e l i g i o u s a t t r i b u t i o n s and r e l i g i o u s  coping  e f f o r t s i s extremely complex (Pargament e t a l . ,  1990), and  few  s t u d i e s i n the area of i l l n e s s  and  c a u s a l a t t r i b u t i o n s g i v e more than s u p e r f i c i a l treatment t o i t . I l l n e s s N a r r a t i v e s and  Causal A t t r i b u t i o n s  Causal a t t r i b u t i o n s are d e a l t w i t h i n c i d e n t a l l y i n a study of the a u t o b i o g r a p h i e s sclerosis  (Robinson, 1990).  of people w i t h m u l t i p l e  Respondents i n t h i s study  were asked t o w r i t e t h e i r " l i f e s t o r i e s , i n c l u d i n g anything  i n t h e i r l i v e s — e v e n t s , e x p e r i e n c e s or  feelings—which p. 1177).  The  was  important t o them" (Robinson,  1990,  i n v e s t i g a t o r d e l i b e r a t e l y r e f r a i n e d from  t e l l i n g respondents what t o w r i t e about, how  to write,  29 or how much t o w r i t e .  The n a r r a t i v e s were then  analyzed and a s s i g n e d the l a b e l s o f p r o g r e s s i v e , r e g r e s s i v e , o r s t a b l e n a r r a t i v e s a c c o r d i n g t o the emotional t r a j e c t o r i e s o f t h e s t o r i e s . a subset o f the p r o g r e s s i v e n a r r a t i v e s  Robinson x  detective  s t o r i e s ' because they a r e e s s e n t i a l l y concerned the mystery  "why me?" and the immediately  q u e s t i o n "what can I do about i t ? " .  calls  with  following  Some o f these  d e t e c t i v e s t o r i e s a r e accounts o f searches f o r medical e x p l a n a t i o n s and treatments, but o t h e r s a r e c e n t r e d on the i n t e r v e n t i o n o f t h e s u p e r n a t u r a l .  "The n a r r a t i v e  may embrace the i n t e r v e n t i o n o f a malevolent s u p e r n a t u r a l f o r c e which i s b e i n g engaged i n a p e r s o n a l struggle...  [or] may embrace t h e d i s c o v e r y o f p o s i t i v e  d i v i n e i n t e r v e n t i o n , i n which God may not o n l y prove t o be an a l l y a f t e r the onset o f the d i s e a s e , but i n some cases be p e r c e i v e d as o f f e r i n g s a l v a t i o n " 1990,  p. 1181).  (Robinson,  Because t h i s study i s based on  n a r r a t i v e accounts, we a r e a b l e t o see the range and the nuances o f responses t h a t might otherwise be grouped  under a s i n g l e heading such as "God-control".  W i l l i a m s (1984) undertook  a study o f 30 a r t h r i t i s  p a t i e n t s , both men and women, i n which he conducted  30  lengthy i n t e r v i e w s t h a t began w i t h the q u e s t i o n "why do you t h i n k you got a r t h r i t i s ? " .  Most o f the n a r r a t i v e s  w r i t t e n by the i n v e s t i g a t o r are l a y accounts o f the e t i o l o g y of a r t h r i t i s .  One respondent, f o r example,  h y p o t h e s i z e d t h a t h i s a r t h r i t i s r e s u l t e d from  exposure  t o t o x i c substances i n t h e f a c t o r y i n which he worked; another respondent f e l t t h a t the s t r e s s o f her f a m i l y l i f e had caused her a r t h r i t i s .  Williams e n t i t l e d the  former respondent's s t o r y " n a r r a t i v e r e c o n s t r u c t i o n as p o l i t i c a l c r i t i c i s m " , and t h e l a t t e r respondent's s t o r y " n a r r a t i v e r e c o n s t r u c t i o n as s o c i a l psychology"; h i s tendency i s t o take a s o c i o l o g i c a l p e r s p e c t i v e r e s p e c t t o h i s respondents' s t o r i e s .  with  He seems somewhat  f r u s t r a t e d as he recounts the s t o r y o f one respondent who b e l i e v e s t h a t her a r t h r i t i s was p r e o r d a i n e d by God; he f e e l s t h a t she has transcended c a u s a l i t y , and thus gendered t h e n a r r a t i v e quest f o r c a u s a l i t y unnecessary. Williams'  (1984) d e c i s i o n t o p r e s e n t h i s data i n  n a r r a t i v e form allowed him t o p r e s e r v e t h e r i c h p r o v i d e d him by h i s respondents.  detail  He s t a t e s i n t h e  i n t r o d u c t i o n t o h i s study h i s d e s i r e t o " e l u c i d a t e t h e s t y l e s o f thought and modes o f c o g n i t i v e  organization  employed by... people s u f f e r i n g from RA i n making sense  31 of the a r r i v a l of c h r o n i c i l l n e s s i n t h e i r ( W i l l i a m s , 1984, p. 176). the e x p l a n a t i o n s  lives"  So r a t h e r than d i s t i l l i n g  of h i s respondents i n t o the d i s c r e t e ,  i n v e s t i g a t o r - d e f i n e d c a t e g o r i e s they seemed t o f i t b e s t , W i l l i a m s t r a c e d the r o u t e s respondents took i n a r r i v i n g at t h e i r causal Williams  conclusions.  (1984) regards  accounts of the o r i g i n s of  i l l n e s s as attempts t o e s t a b l i s h " p o i n t s of r e f e r e n c e between body, s e l f , and s o c i e t y and t o r e c o n s t r u c t a sense of order from the fragmentation chronic i l l n e s s "  produced by  ( W i l l i a m s , 1984, p. 177).  Thus, the  c r e a t i o n o f the i l l n e s s s t o r y i s an a c t of meaningmaking, of r e s t o r i n g o n e s e l f t o wholeness and of reckoning  with a body t h a t has betrayed  balance,  the s e l f and  a s o c i e t y t h a t r e a s s i g n s i d e n t i t y a c c o r d i n g t o the s t a t u s of one's h e a l t h . imaginative  The s t o r y r e p r e s e n t s  an  r e c o n s t r u c t i o n of the p a s t whose purpose i s  t o l e n d meaning t o the p r e s e n t . My study i s s i m i l a r t o W i l l i a m s '  (1984) study i n  i t s respondents, i n i t s c o n s i d e r a t i o n of the s o c i a l and c u l t u r a l f o r c e s t h a t shape c a u s a l a t t r i b u t i o n s , and i n i t s p r e s e n t a t i o n of data i n n a r r a t i v e form.  However,  my study allows f o r m u l t i - f a c t o r c a u s a l t h e o r i e s , and  32  embraces the p h i l o s o p h i c a l n o t i o n s of the coinvestigators.  W i l l i a m s ' study might be  hermeneutical because  called  i t i s h e a v i l y i n t e r p r e t i v e ; the  author e x t r a p o l a t e s from the raw data p r o v i d e d by respondents t o c o n s t r u c t s o c i o l o g i c a l arguments. p r e s e n t i n g my less  In  respondents' s t o r i e s , I have t r i e d t o be  interpretive.  L i f e Schemes and the Search f o r Meaning Thompson and J a n i g i a n  (1988) r e f e r t o the k i n d of  s t o r y t o l d by W i l l i a m s ' (1984) respondents as a scheme.  A l i f e scheme has s e v e r a l elements;  p r o t a g o n i s t i s the s e l f as seen from one's  life  first, its  own  p e r s p e c t i v e ; second, i t r e v e a l s a p a r t i c u l a r world view, t h a t i s , a s e t of b e l i e f s and assumptions the world and how  i t o p e r a t e s ; t h i r d , i t says  about something  about the g o a l s of the p r o t a g o n i s t , whether they be s p e c i f i c and measurable,  such as the attainment of a  c e r t a i n job, or l o o s e and i l l - d e f i n e d , such as the betterment of o n e s e l f ; f i n a l l y , i t recounts events r e l e v a n t t o the attainment of these g o a l s , i n c l u d i n g events t h a t render i m p o s s i b l e the achievement d e s i r e d g o a l s , events t h a t n e c e s s i t a t e g o a l -  of  33  m o d i f i c a t i o n , and events t h a t f a c i l i t a t e  goal-  attainment. L i f e schemes can be accounts o f t h e s e a r c h f o r meaning.  x  Found meaning' (as opposed t o i m p l i c i t  meaning, the product o f t h e a p p r a i s a l process t h a t occurs when one i s f a c e d w i t h a p o t e n t i a l l y  stressful  s i t u a t i o n ) has, a c c o r d i n g t o Thompson and J a n i g i a n (1988), two components: a sense o f o r d e r and a sense o f purpose.  A person w i t h a sense o f o r d e r b e l i e v e s t h a t  he o r she l i v e s i n an o r d e r l y world governed by r u l e s , laws, o r p r i n c i p l e s .  Meaningful events a r e those t h a t  f o l l o w from o r f i t w i t h i n t h i s o r d e r , and seem t o have some purpose o r reason f o r b e i n g . The l i f e scheme i n t e g r a t e s these two a s p e c t s o f found meaning; o r d e r i s p r o v i d e d by s t a b l e world and s e l f views, and purpose by g o a l s and by the p o s s i b i l i t y of  t h e i r attainment.  The s e a r c h f o r meaning o c c u r s  when one's l i f e scheme no l o n g e r p r o v i d e s a sense o f o r d e r , o r a sense o f purpose, o r both.  The advent o f a  d i s a b l i n g i l l n e s s such as RA may c h a l l e n g e t h e components o f the l i f e scheme, c a s t i n g doubt on the accuracy o f one's world views, f o r example, o r c a u s i n g one t o r e t h i n k one's g o a l s and r e e v a l u a t e t h e  34 p o s s i b i l i t y of t h e i r attainment.  The s e a r c h f o r  meaning i s an attempt t o r e s t o r e the sense t h a t one's life  i s o r d e r l y and p u r p o s e f u l . A t t r i b u t i o n a l q u e s t i o n s o f t e n a r i s e as p a r t of the  c h a l l e n g e t o the l i f e scheme posed by RA.  I f , as  Lerner (1980) a s s e r t s , people want t o b e l i e v e t h a t the world i s so ordered t h a t people get what they deserve and deserve what they get, then one might expect  RA  p a t i e n t s t o view t h e i r i l l n e s s as punishment f o r p a s t wrongs.  Yet numerous i n v e s t i g a t o r s (e.g., Bulman &  Wortman, 1977;  Robinson,  1990;  S c h u s s l e r , 1992)  have  found t h a t r e l a t i v e l y few p a t i e n t s see t h e i r i l l n e s s as punishment; c o n t r a r y t o e x p e c t a t i o n s , a l a r g e p r o p o r t i o n of p a t i e n t s see t h e i r i l l n e s s i n a p o s i t i v e light. of  S c h u s s l e r (1992), f o r example, found t h a t  the 50 RA p a t i e n t s he s t u d i e d viewed t h e i r  as a c h a l l e n g e , whereas o n l y 10% viewed  60%  illness  i t as a  punishment. A n e g a t i v e event such as the onset of a d i s a b l i n g i l l n e s s i s l i k e l y t o pose a c h a l l e n g e t o world and views. may  self  The s i c k person then has two c h o i c e s : he or she  e i t h e r change the l i f e scheme, or change  p e r c e p t i o n s of the event.  Piaget (cited i n Solso,  35 1988) might have used the terms *accommodation' x  a s s i m i l a t i o n ' t o d e s c r i b e these two  and  adaptational  processes. By q u e s t i o n i n g people about t h e i r c a u s a l attributions for their illness,  one might g e t a sense  of which of these two processes has been chosen, and of the  c o g n i t i v e journey taken i n the r e o r d e r i n g o f one's  world view, or the r e c o n s t r u i n g o f the event o f illness.  Causal a t t r i b u t i o n s encompass the l a r g e r  q u e s t i o n o f why people s u f f e r , as w e l l as the more s p e c i f i c q u e s t i o n of why  a particular  individual  s u f f e r s ; they p r o v i d e the r e s e a r c h e r , t h e r e f o r e , a glimpse of the world views o f h i s o r her respondents, a p e r s p e c t i v e from which t o view the s t r u g g l e towards the r e e s t a b l i s h m e n t of a sense o f o r d e r . The o t h e r component o f found meaning i s , as mentioned, a sense of purpose.  The means by which one  achieves a sense of purpose, the g o a l s t o which one a s p i r e s , may be p r o f o u n d l y a f f e c t e d by a d i s a b l i n g c o n d i t i o n , whether by p h y s i c a l d i f f i c u l t y o r i m p o s s i b i l i t y , or by a r e o r d e r i n g of one's  priorities.  The r e t h i n k i n g and the p o s s i b l e m o d i f i c a t i o n o f one's g o a l s o f t e n demanded by RA i s one aspect o f c o p i n g .  36  For example, one may  respond t o RA by abandoning one's  g o a l s , r e g a r d i n g g o a l - s e t t i n g as p o i n t l e s s i n the of the u n p r e d i c t a b l e and sometimes u n r e l e n t i n g of RA;  face  course  c o n v e r s e l y , one might f e e l i n s p i r e d t o d i r e c t  one's work i n a p a r t i c u l a r way experience  of RA;  because of t h e i r  a f u r t h e r p o s s i b i l i t y i s the  abandonment of a c t i o n - o r i e n t e d g o a l s i n favour of a b e t t e r i n g of the i n n e r  self.  Assumptions In embarking on t h i s study,  I assumed t h a t the  f i n d i n g s with r e s p e c t t o c a u s a l a t t r i b u t i o n s i n the s p i n a l c o r d i n j u r y and cancer  l i t e r a t u r e do  not  g e n e r a l i z e t o the a r t h r i t i s p a t i e n t p o p u l a t i o n . S e v e r a l f a c t s support  t h i s assumption.  demographics of the p o p u l a t i o n s  First,  are d i f f e r e n t .  the For  example, p a t i e n t s with s p i n a l c o r d i n j u r i e s tend t o  be  young and male, whereas a r t h r i t i s p a t i e n t s tend t o be o l d e r and  female.  The  samples from which the data  on  s p i n a l c o r d p a t i e n t s are d e r i v e d are comprised of a r e l a t i v e l y l a r g e p r o p o r t i o n of Black and i n d i v i d u a l s ; the prevalence  of RA  Hispanic  amongst F i r s t  Nations  i n d i v i d u a l s i s l i k e l y t o be r e f l e c t e d i n a sample of patients.  Second, the nature  of the d i s a b i l i t i e s  or  RA  37 illnesses differ.  S p i n a l c o r d i n j u r y i s sudden and  the  p a t i e n t ' s f u n c t i o n a l c a p a c i t y remains r e l a t i v e l y static.  The  course of a r t h r i t i s ,  cancer, can be u n p r e d i c t a b l e ,  l i k e the course of  w i t h a general  f u n c t i o n a l c a p a c i t y over time.  RA  decline i n  d i f f e r s from cancer  i n many ways, not the l e a s t of which i s the f a c t it  i s rarely fatal.  that  T h i r d , the degree t o which  d i f f e r e n t patient populations attributions varies.  can make e x t e r n a l  Because the cause of s p i n a l cord  i n j u r y i s t o be found i n the environment, the s p i n a l c o r d p a t i e n t i s a f f o r d e d the o p p o r t u n i t y plausible external a t t r i b u t i o n s .  to  construct  Although cancer  p a t i e n t s are not able t o make such d i r e c t e x t e r n a l a t t r i b u t i o n s , they may  be a b l e t o p o i n t t o  environmental c o n t r i b u t o r s t o t h e i r  disease.  A r t h r i t i s , w i t h i t s unknown e t i o l o g y (Berkow, 1987), a f f o r d s no such o p p o r t u n i t i e s . Summary A s i d e from the f a c t t h a t f i n d i n g s about the a t t r i b u t i o n s of other p a t i e n t p o p u l a t i o n s apply t o RA  causal  might not  p a t i e n t s , none of the s t u d i e s c i t e d  gives  c o n s i d e r a t i o n t o the development of c a u s a l hypotheses over time, and none, except Gotay (1985), take i n t o  38  account the i n f l u e n c e of the f a m i l y and environments on the formation  social  of these hypotheses.  F u r t h e r , none of these s t u d i e s looks a t the ways i n which c a u s a l a t t r i b u t i o n s might be a s s o c i a t e d w i t h p a r t i c u l a r k i n d of coping, purpose.  a  t h a t of a c h i e v i n g a sense of  T h i s study endeavours t o extend the f i n d i n g s  of p r e v i o u s  s t u d i e s by a d d r e s s i n g  these d e f i c i e n c i e s .  39 Chapter I I I : Methodology T h i s study takes a q u a l i t a t i v e approach  to  understanding c a u s a l a t t r i b u t i o n s , and i s based on i n depth, open-ended i n t e r v i e w s . t h i s approach  The d e c i s i o n t o take  r e f l e c t e d my d e s i r e t o g a i n a broad  understanding of the c a u s a l a t t r i b u t i o n s of RA p a t i e n t s r a t h e r than t e s t a s p e c i f i c h y p o t h e s i s (Hammersley & A t k i n s o n , 1983), and my  own  b e l i e f t h a t the meanings  c o n s t r u c t e d by i n d i v i d u a l s are b e s t understood when the c o n t e x t from which these meanings arose are e x p l o r e d and p r e s e r v e d .  The respondents' data are presented i n  n a r r a t i v e form, as a l i f e scheme, t o use the term employed by Thompson and J a n i g i a n (1988). Rationale T h i s method was  chosen  f o r s e v e r a l reasons.  F i r s t , although t h e r e are s t a n d a r d i z e d instruments a v a i l a b l e t o measure a t t r i b u t i o n s i n the p s y c h o l o g i c a l realm, a t t r i b u t i o n s r e l a t e d t o concepts such as l o c u s of c o n t r o l  (e.g., M u l t i d i m e n s i o n a l H e a l t h Locus of  C o n t r o l ) and h e l p l e s s n e s s (e.g., A r t h r i t i s H e l p l e s s n e s s I n v e n t o r y ) , no such instruments e x i s t t o measure a t t r i b u t i o n s i n the n o o l o g i c a l realm, i . e . , p h i l o s o p h i c a l c o n s t r u c t i o n s t h a t i n d i v i d u a l s use t o  40  explain causality.  In any case,  whether any s t a n d a r d i z e d  instrument  or a p p r o p r i a t e f o r understanding chronic i l l n e s s .  i t i s questionable would be adequate  the experience  of  Kleinman (1988) makes a case f o r the  inadequacy of t r a d i t i o n a l q u a n t i t a t i v e r e s e a r c h i n t h i s area; he s t a t e s : the thinned-out image of p a t i e n t s and f a m i l i e s t h a t . . . must emerge from such r e s e a r c h i s s c i e n t i f i c a l l y r e p l i c a b l e but o n t o l o g i c a l l y i n v a l i d ; i t has s t a t i s t i c a l , not e p i s t o m o l o g i c a l , s i g n i f i c a n c e ; i t i s a dangerous d i s t o r t i o n . . . t o e v a l u a t e s u f f e r i n g r e q u i r e s more than the a d d i t i o n of a few questions t o a s e l f - r e p o r t form or a s t a n d a r d i z e d i n t e r v i e w ; i t can o n l y emerge from an e n t i r e l y d i f f e r e n t way of o b t a i n i n g v a l i d i n f o r m a t i o n from i l l n e s s n a r r a t i v e s . Ethnography, biography, h i s t o r y , p s y c h o t h e r a p y — t h e s e are the a p p r o p r i a t e r e s e a r c h methods t o c r e a t e knowledge about the p e r s o n a l world of s u f f e r i n g . These methods enable us t o grasp, behind the simple sounds of b o d i l y p a i n and p s y c h i a t r i c symptoms, the complex i n n e r language of h u r t , d e s p e r a t i o n , and moral p a i n (and a l s o triumph) of l i v i n g an i l l n e s s (pp. 28-29) Second, the type of a t t r i b u t i o n s t h a t I sought t o d i s c o v e r were below the l e v e l of conscious  awareness  f o r some, or had never been p u b l i c a l l y expressed  by  o t h e r s ; the i n t e r v i e w s allowed c o - i n v e s t i g a t o r s t o b r i n g i n t o consciousness  t h e i r modes of t h i n k i n g and  to  express v e r b a l l y i d e a s t h a t seldom enter everyday conversation.  T h i r d , the nature of the s u b j e c t matter  41 i s such t h a t some people had d i f f i c u l t y i n understanding what I was l o o k i n g f o r ( p a r t i c u l a r l y as they were so accustomed t o g i v i n g accounts t h a t were p u r e l y medical as opposed t o e x p e r i e n t i a l ) , o r found i t d i f f i c u l t t o a r t i c u l a t e t h e i r b e l i e f s ; t h e language I used t h e r e f o r e had t o be a p p r o p r i a t e t o the understanding o f each c o - i n v e s t i g a t o r , and I had t o c o n t i n u a l l y probe and c l a r i f y t o ensure t h a t I understood a c c u r a t e l y what t h e c o - i n v e s t i g a t o r s were t e l l i n g me.  Indeed, many o f t h e c o - i n v e s t i g a t o r s i n  t h i s study were q u i c k t o g i v e t h e i r consent t o p a r t i c i p a t e , b e l i e v i n g t h a t they would simply be r e q u i r e d t o repeat o f t - t o l d c h r o n o l o g i e s o f medical events.  F i n a l l y , as mentioned, t h i s study does not  focus narrowly on c a u s a l a t t r i b u t i o n s and t h e s e e k i n g of a sense o f purpose a t a s i n g l e p o i n t i n time, and i n i s o l a t i o n from the c o n t e x t t h a t gave r i s e t o them; r a t h e r i t t r a c e s the thought p r o c e s s e s o f t h e c o i n v e s t i g a t o r s , as they developed t h e i r c a u s a l hypotheses and t h e i r l i f e g o a l s over time, n o t i n g the s o c i a l and c u l t u r a l f o r c e s t h a t shaped  them.  42 Kleinman (1988) emphasizes the value of the scheme, both f o r the p a t i e n t and r e f e r s to  life  f o r the c l i n i c i a n .  He  the  s i c k i n d i v i d u a l ' s p e r s o n a l myth, a s t o r y t h a t g i v e s shape t o an i l l n e s s so as t o d i s t a n c e an otherwise fearsome r e a l i t y . The c l i n i c i a n attends t o the p a t i e n t ' s and the f a m i l y ' s summation of life's trials. T h e i r n a r r a t i v e h i g h l i g h t s core l i f e t h e m e s — f o r example, i n j u s t i c e , courage, p e r s o n a l v i c t o r y a g a i n s t the o d d s — f o r whose p r o s e c u t i o n the d e t a i l s of i l l n e s s supply evidence. Thus, p a t i e n t s order t h e i r experience of i l l n e s s — w h a t i t means t o them and t o s i g n i f i c a n t o t h e r s — a s personal n a r r a t i v e s . The i l l n e s s n a r r a t i v e i s a s t o r y the p a t i e n t t e l l s , and s i g n i f i c a n t o t h e r s r e t e l l , t o g i v e coherence t o the d i s t i n c t i v e events and long-term course of suffering. The p l o t l i n e s , core metaphors, and r h e t o r i c a l d e v i c e s t h a t s t r u c t u r e the i l l n e s s n a r r a t i v e are drawn from c u l t u r a l and p e r s o n a l models f o r a r r a n g i n g e x p e r i e n c e s i n meaningful ways and f o r e f f e c t i v e l y communicating those meanings. Over the long course of c h r o n i c d i s o r d e r , these model t e x t s shape and even c r e a t e experience, (p. 49). Thus, the s t o r y i t s e l f  i s the meaning u n i t .  e x t r a c t a t t r i b u t i o n s or coping  s t r a t e g i e s from  s t o r y , wrenching them from the context  the  i n which  p a t i e n t s so c a r e f u l l y p l a c e them, i s t o c o l l a p s e s t r u c t u r e s t h a t support t h e i r meaning. t h a t were t o l d t o me  by my  understood through a n a r r a t i v e .  f  the  The s t o r i e s  co-investigators  t h a t meaning-making i s a p r o c e s s  To  illustrate  a process t h a t can  be  43  Co-investigators Research p a r t i c i p a n t s were s o l i c i t e d from the i n p a t i e n t a r t h r i t i s s e r v i c e of Pearson H o s p i t a l , Vancouver, B r i t i s h Columbia.  T h i s h o s p i t a l i s the  p r o v i n c i a l r e f e r r a l c e n t r e t o which people w i t h severe d i s a b i l i t i e s are sent My was  f o r s p e c i a l i z e d care.  decision to interview  only h o s p i t a l i n p a t i e n t s  based on s e v e r a l f a c t o r s .  a r t h r i t i s was  F i r s t , because t h e i r  severe enough t o warrant h o s p i t a l i z a t i o n ,  I b e l i e v e d t h a t my  c o - i n v e s t i g a t o r s would be more  motivated t o s e a r c h f o r c a u s a l e x p l a n a t i o n s people whose a r t h r i t i s was Secondly, my  own  than would  a minor inconvenience.  experience suggested t h a t people's  i n c l i n a t i o n t o engage i n a c a u s a l  s e a r c h i s heightened  i n the h o s p i t a l environment where a t t e n t i o n i s focused so i n t e n s e l y on the d i s e a s e ,  and where people  witness t o so much s u f f e r i n g . atmosphere was  T h i r d , the h o s p i t a l  conducive t o the k i n d of  r e f l e c t i o n t h a t I t r i e d t o encourage. interviewed  are  thoughtful The  women I  were f r e e from the demands and d i s t r a c t i o n s  of t h e i r homes, and had  the p r i v a c y t h a t allowed them  t o speak f r e e l y ; t h i s p o i n t was  r e i n f o r c e d f o r me  when  44  I t a l k e d t o them by telephone a f t e r they had r e t u r n e d home. The advantages  of i n t e r v i e w i n g o n l y h o s p i t a l  p a t i e n t s c o u l d have been outweighed  by the disadvantage  of not b e i n g a b l e t o get the k i n d of demographic d i v e r s i t y I wanted.  For t h i s reason I i n i t i a l l y  arranged f o r p e r m i s s i o n t o s o l i c i t r e s e a r c h p a r t i c i p a n t s from the A r t h r i t i s S o c i e t y support p o p u l a t i o n as w e l l .  group  F o r t u n a t e l y , t h i s problem d i d not  arise. I chose t o i n t e r v i e w 12 i n d i v i d u a l s , based on the f a c t t h a t o t h e r r e s e a r c h i n the department  of  C o u n s e l l i n g Psychology w i t h a s i m i l a r d e s i g n has  found  t h i s sample s i z e u s e f u l f o r i l l u s t r a t i n g both the d i v e r s i t y and the commonalties (e.g., M a r s h a l l , 1993;  i n respondents'  Swain,  stories  1990).  I i n t e r v i e w e d my c o - i n v e s t i g a t o r s i n the evening so t h a t they would not be d i s t r a c t e d by the n e c e s s i t y of meeting appointment medical programs.  times or having t o a t t e n d t h e i r  I approached  of whom were f a m i l i a r w i t h my suggest p a t i e n t s who study, and who  met  the charge nurses, a l l  study, and asked them t o  a l l of the c r i t e r i a f o r my  might be w i l l i n g t o be i n t e r v i e w e d .  The  45 nurse would go alone t o t h e p a t i e n t ' s room, and e x p l a i n who I was and what I was d o i n g . introduced nurse.  to prospective  I was then f o r m a l l y  c o - i n v e s t i g a t o r s by t h e  Only one person who was approached, an e l d e r l y  A s i a n woman, d e c l i n e d t o be i n t e r v i e w e d ,  apparently  because she f e l t t o o shy. A f t e r s e v e r a l c o - i n v e s t i g a t o r s had been interviewed,  I began t o engage i n t h e o r e t i c a l  sampling,  l o o k i n g f o r p a r t i c i p a n t s whose demographic c h a r a c t e r i s t i c s were not a l r e a d y represented  i n my  group; f o r example, i t was very easy t o f i n d  willing  p a r t i c i p a n t s i n t h e 40-60 age range, b u t I had t o a c t i v e l y seek younger and o l d e r c o - i n v e s t i g a t o r s . The  c r i t e r i a f o r i n c l u s i o n i n t h e study were as  follows: 1.  f o r t h e reasons s t a t e d below, c o - i n v e s t i g a t o r s had  t o be women; 2.  c o - i n v e s t i g a t o r s had t o have been diagnosed a t  l e a s t 3 years p r e v i o u s l y as I wanted t o see how c a u s a l models developed over time; 3.  c o - i n v e s t i g a t o r s had t o have a  systemic,  inflammatory form o f a r t h r i t i s , r a t h e r than (wear-and-tear) a r t h r i t i s ; and  osteo-  46 4.  c o - i n v e s t i g a t o r s had t o speak E n g l i s h f l u e n t l y so  t h a t I c o u l d be sure I had a thorough their  understanding o f  stories. Other than these b a s i c c r i t e r i a ,  I strove f o r  d i v e r s i t y i n the p a r t i c i p a n t group, e s p e c i a l l y w i t h r e s p e c t t o age, c u l t u r e , and socioeconomic requirement  status.  The  t h a t p a r t i c i p a n t s speak f l u e n t E n g l i s h  l i m i t e d t h e degree o f c u l t u r a l d i v e r s i t y i n t h e group, but some d i v e r s i t y was p o s s i b l e . Appendix A c o n t a i n s a t a b l e o f c o - i n v e s t i g a t o r demographics.  The ages o f t h e c o - i n v e s t i g a t o r s ranged  from 22-78, with a mean o f 45.3 and a standard d e v i a t i o n o f 14.3.  The age o f onset ranged  from 2 t o  51, w i t h a mean o f 29 and a standard d e v i a t i o n o f 13.3. The number o f years s i n c e onset ranged  from 4 t o 32,  w i t h a mean o f 16.3 and a standard d e v i a t i o n o f 8.5. A number o f occupations were r e p r e s e n t e d i n t h e group; t h e r e were two nurses, f o u r f u l l - t i m e mothers, a c a r e e r m i l i t a r y person, a c l e r i c a l  worker, a student,  an unemployed r e t a i l worker, and a t r i b a l e l d e r .  It  was v e r y apparent t o me t h a t t h e r e was a wide range i n t h e i r s k i l l as h i s t o r i a n s , i n t h e i r p r o p e n s i t y t o  47 engage i n i n t r o s p e c t i o n , and i n t h e i r c a p a c i t y f o r abstract thinking. S i x o f t h e c o - i n v e s t i g a t o r s were o f t h e dominant white, E n g l i s h - s p e a k i n g North American c u l t u r e , one was a f i r s t - g e n e r a t i o n E n g l i s h immigrant, g e n e r a t i o n Welsh immigrant,  one a f i r s t -  one French-Canadian, one  second-generation S i k h , and two were F i r s t  Nations  women. Nine o f t h e women were diagnosed w i t h t h e a d u l t form o f RA, and two w i t h j u v e n i l e - o n s e t RA. t o Medsger and Masi epidemiological  According  (1985), " c l i n i c a l and  d i f f e r e n c e s between t h e onset types o f  j u v e n i l e a r t h r i t i s suggest t h a t a v a r i e t y o f syndromes o v e r l a p age l i m i t s , and t h a t t h e age d i s t i n c t i o n between a d u l t and j u v e n i l e cases i s an a r t i f i c i a l one." The remaining p a r t i c i p a n t was diagnosed w i t h p s o r i a t i c a r t h r i t i s , a form v e r y s i m i l a r t o RA except t h a t p s o r i a s i s i s p r e s e n t as w e l l as j o i n t (Berkow, 1987); I f e l t  inflammation  t h a t i t was worthwhile t o  i n c l u d e t h i s p a r t i c i p a n t as she can be viewed as someone w i t h t h e symptoms o f RA, and a minor s k i n problem.  secondary  48 R a t i o n a l e f o r I n c l u d i n g Only Women i n the Study There were s e v e r a l reasons f o r i n c l u d i n g o n l y women i n t h i s study.  The b i o l o g i c a l and a c q u i r e d r i s k s  f o r d e v e l o p i n g RA are d i f f e r e n t f o r men and women ( R e i s i n e , 1993).  Women are t h r e e times as l i k e l y as  men t o develop RA (Medsger & Masi, 1985), and t h i s may be i n d i c a t i v e o f g e n e t i c o r hormonal i n f l u e n c e s .  Women  w i t h RA experience more d i s e a s e f l a r e s than men w i t h RA, though men have h i g h e r r a t e s o f o s t e o n e c r o s i s ( R e i s i n e , 1993). visits,  Men tend t o have more p h y s i c i a n  l o n g e r h o s p i t a l s t a y s , and e a r l i e r  arthroplasties  joint  ( R e i s i n e , 1993), p o s s i b l y because they  tend t o be more a c t i v e i n t h e i r l e i s u r e p u r s u i t s and t o have more p h y s i c a l l y demanding j o b s .  On average, women  tend t o be f i v e years o l d e r than men a t t h e time o f j o i n t replacement,  and have more severe  disability  ( R e i s i n e , 1993). Women w i t h RA a r e l e s s l i k e l y t o be married, and tend t o have fewer supports a v a i l a b l e t o m a i n t a i n  their  f u n c t i o n a l s t a t u s than do t h e i r male c o u n t e r p a r t s ( R e i s i n e , 1993).  They a r e more l i k e l y t o l a b e l  symptoms as i l l n e s s , and tend t o r e p o r t more p a i n and d i s a b i l i t y than men, even though t h e i r c o n d i t i o n might  49 not be worse ( R e i s i n e , 1993).  The ways i n which they  t e l l t h e i r s t o r i e s , t h e r e f o r e , i s a p t t o be q u i t e different.  Women a r e a l s o more l i k e l y than men t o  develop d e p r e s s i v e symptoms (Frank e t a l . , 1988). In summary, t h e r i s k f a c t o r s f o r RA may be d i f f e r e n t f o r women than f o r men, access t o and utilization  o f medical and s o c i a l r e s o u r c e s i s  different,  p s y c h o l o g i c a l outcomes a r e d i f f e r e n t , and  the experience o f t h e d i s e a s e i t s e l f  i s different.  These d i f f e r e n c e s p o i n t t o t h e need t o study women's c a u s a l models s e p a r a t e l y from those o f men. Data C o l l e c t i o n Mishler  (1986) s t a t e s : "the complex and v a r i e d  procedures t h a t c o n s t i t u t e t h e c o r e methodology o f interview research are d i r e c t e d p r i m a r i l y t o the task of making sense o f what respondents say when t h e everyday sources o f mutual understanding have been e l i m i n a t e d by t h e r e s e a r c h s i t u a t i o n i t s e l f "  (p. 3 ) .  There a r e s e v e r a l f a c t o r s t h a t may widen t h e gap between i n t e r v i e w e r and respondent.  F o r example, t h e  respondent must understand what t h e i n t e r v i e w e r i s l o o k i n g f o r , and must t r y t o narrow h i s o r h e r responses t o t h e phenomenon o f i n t e r e s t t o t h e  50 r e s e a r c h e r ; respondent common language;  and i n t e r v i e w e r must share a  t h e i n t e r v i e w e r must be f a m i l i a r  enough w i t h the * c u l t u r e ' o f which t h e respondent  i sa  member t o ask f r u i t f u l q u e s t i o n s . In t h e course o f my study i t became very obvious t o me t h a t t h e r e i s a common language with a r t h r i t i s .  shared by people  Not o n l y i s t h e r e a short-hand way of  speaking about a r t h r i t i s when two people have had s i m i l a r e x p e r i e n c e s , but t h e v e r y words chosen may be misunderstood the language.  o r heard wrong by o t h e r s u n f a m i l i a r w i t h For instance, i n reviewing the  t r a n s c r i p t s r e t u r n e d t o me by my t y p i s t , I found t h a t she had s u b s t i t u t e d t h e word "exasperate" f o r "exacerbate", and c o u l d n o t make o u t c e r t a i n words commonly used i n t h e c u l t u r e o f a r t h r i t i s .  I have had  t o make major r e v i s i o n s t o many o f t h e t r a n s c r i p t s because t h e t r a n s c r i p t i o n i s t was not f a m i l i a r w i t h t h e language  of a r t h r i t i s .  Because I have l i v e d w i t h  a r t h r i t i s f o r many years I have an e x t r a o r d i n a r y advantage i n understanding t h e s t o r i e s o f my c o investigators . Dyck (1988, c i t e d i n Carpenter, 1991, p. 65) d e f i n e s " i n s i d e r r e s e a r c h [as the] study o f one's own  51 s o c i e t y , with the r e s e a r c h e r p a r t i c i p a t i n g as a member of the group being s t u d i e d . "  The  advantage t o  insider  r e s e a r c h i s , of course, the p o t e n t i a l f o r t r u e understanding  of respondents' p e r s p e c t i v e s .  o t h e r hand, I am a c u t e l y aware t h a t my  own  On  the  experience  with RA means t h a t I b r i n g t o the r e s e a r c h c e r t a i n i d e a s about the experience  of RA t h a t may  by o t h e r s .  j o u r n a l t o r e c o r d my  thoughts and  I kept a f i e l d  not be  shared own  f e e l i n g s as the r e s e a r c h progressed  and  used the technique  of b r a c k e t i n g ' : I i n c l u d e d my  s t o r y of a r t h r i t i s  (Appendix B), so t h a t I can show  t h a t I am not simply o v e r l a y i n g my co-investigators' The  own  x  own  experience  on  my  stories.  i n t e r v i e w s tended t o be q u i t e lengthy,  most exceeding 2 hours, and  11 of the 12  co-  i n v e s t i g a t o r s were i n t e r v i e w e d more than once. o r i g i n a l i n t e r v i e w s were tape-recorded as were follow-up telephone  with  The  and t r a n s c r i b e d ,  interviews that occurred  d u r i n g the w r i t i n g of the s t o r i e s .  Unfortunately,  my  r e c o r d i n g equipment f a i l e d both times t h a t I i n t e r v i e w e d one copious  p a r t i c u l a r c o - i n v e s t i g a t o r , but I took  notes from which I c o n s t r u c t e d her s t o r y , and  I  52  phoned h e r as I was completing t h e w r i t t e n s t o r y t o check my understanding and t o seek During t h e f i r s t  elaboration.  i n t e r v i e w , I began by s a y i n g :  I am doing a study t o understand t h e ways i n which people make sense out o f t h e f a c t t h a t they have arthritis. I wonder i f you c o u l d t e l l me about t h e experience of your a r t h r i t i s . When I say "the experience o f your a r t h r i t i s " I am n o t j u s t t a l k i n g about your medical h i s t o r y , although t h a t i s a p a r t o f i t . I'd l i k e you t o t e l l me about your a r t h r i t i s as though you were t e l l i n g a s t o r y w i t h a b e g i n n i n g , a middle, and an end. While t e l l i n g your s t o r y , t r y t o remember as many d e t a i l s as you can about what you were t h i n k i n g , f e e l i n g , and d o i n g a t d i f f e r e n t p o i n t s i n time. Any q u e s t i o n s ? T h i s i n t e r v i e w was open-ended, and, depending  on t h e  p h i l o s o p h i c a l o r i e n t a t i o n s o f t h e respondents, e x p l o r e d such t o p i c s as why God causes o r a l l o w s people t o s u f f e r , whether people who become s i c k a r e t o blame f o r t h e i r s i c k n e s s , whether t h e r e i s heroism i n s u f f e r i n g , the t r u t h o f s a y i n g s such as "God never g i v e s us burdens g r e a t e r than we can bear", and t h e degree o f randomness i n t h e u n i v e r s e . complete  Appendix C c o n t a i n s a more  l i s t i n g of interview questions.  I was  c a u t i o u s t o a v o i d l e a d i n g t h e respondents t o any particular conclusions.  53  At the s t a r t of subsequent i n t e r v i e w s , my  I checked  understanding of the c o - i n v e s t i g a t o r s ' s t o r i e s .  then asked them t o e l a b o r a t e ,  and  t o answer  I  questions  d i r e c t l y r e l a t e d to causal a t t r i b u t i o n s , p a r t i c u l a r l y i f t h i s element was  not spontaneously o f f e r e d i n the  storytelling. E i g h t of the 12 c o - i n v e s t i g a t o r s r e c e i v e d up telephone c a l l s ; these c a l l s were separated  followfrom the  o r i g i n a l i n t e r v i e w s by a year or more, and i n t e r e s t i n g l y , I u s u a l l y found t h a t I was valuable  information  o r i g i n a l interviews.  t h a t had  offered  very  not been o f f e r e d i n the  Perhaps the passage of time  had  allowed the c o - i n v e s t i g a t o r s t o r e f l e c t more f u l l y t h e i r own simply  a t t r i b u t i o n a l processes,  on  or perhaps they were  i n d i f f e r e n t frames of mind a t home than they  were i n h o s p i t a l , and  a b l e t o approach the  from d i f f e r e n t p e r s p e c t i v e s .  questions  Another p o s s i b i l i t y i s  t h a t over the course of i n t e r v i e w i n g s e v e r a l i n v e s t i g a t o r s my r e l e v a n t had  co-  a p p r e c i a t i o n of what i n f o r m a t i o n  broadened, making me  t h i n g s t h a t a t f i r s t I might have  was  more a t t e n t i v e t o disregarded.  54  Data A n a l y s i s To begin, t h e respondents' s t o r i e s were individually. an end.  A s t o r y has a beginning,  "In the beginning,  analyzed  a middle, and  t h e s t o r y i s bounded by two  p o l e s , i s and ought t o be (Cochran, 1990, p. 18). For the RA p a t i e n t , the " i s " might be a s t a t e o f chaos, confusion,  a sense o f d i s o r d e r and i n j u s t i c e .  "Ought  t o be" might be t h e r e s t o r a t i o n o f a sense o f order and peace.  The gap between " i s " and "ought t o be" d e f i n e s  the movement o f t h e s t o r y .  The middle o f the s t o r y i s  an account o f the p r o t a g o n i s t ' s e f f o r t s t o move from " i s " t o "ought t o be".  The end o f t h e s t o r y might be  an achievement o f "ought t o be" as o r i g i n a l l y e n v i s i o n e d by t h e p r o t a g o n i s t ,  i t might be an  u n a n t i c i p a t e d , y e t s a t i s f y i n g , new s e t o f circumstances,  o r i t might be an abandonment o f the  quest f o r "ought t o be". involves a determination  Analysis of the story o f t h e s i t u a t i o n a l and p s y c h i c  events t h a t p r o p e l l e d the p r o t a g o n i s t from the beginning The beginning  o f t h e s t o r y t o t h e end. i n t e r v i e w s o f t e n s t a r t e d with a c l e a r then meandered o r jumped backwards o r  forwards i n time, making the s t o r i e s d i f f i c u l t t o  55  follow.  A l s o , second and subsequent i n t e r v i e w s , when  o v e r l a i d on p r e c e d i n g  interviews, f i l l e d  fleshed out d e t a i l s .  So i n order t o g i v e myself a  coherent  i n gaps and  framework from which t o r e c o n s t r u c t t h e  s t o r i e s , I drew t i m e l i n e s f o r each c o - i n v e s t i g a t o r , g l e a n i n g i n f o r m a t i o n from t h e t r a n s c r i p t s , and p l a c e d s i g n i f i c a n t l i f e events below t h e l i n e s and, f o r c l a r i t y , t h e c a u s a l elements t h a t were i n c o r p o r a t e d i n t o t h e s t o r i e s above t h e l i n e s .  A s i m p l i f i e d example  of one o f t h e time l i n e s i s c o n t a i n e d  i n Appendix D.  I used t h e time l i n e s t o w r i t e c h r o n o l o g i c a l stories.  Often I began t h e s t o r i e s with t h e c o -  i n v e s t i g a t o r s own words, but sometimes other seemed t o g i v e more i n f o r m a t i o n . wrote Stacey's  approaches  F o r example, when I  s t o r y I s t a r t e d by d e s c r i b i n g some o f  the n u r t u r i n g behaviour I had observed b e f o r e I even met  her; t h e theme o f t h e d i s a b l e d n u r t u r e r , o r wounded  h e a l e r , was c r i t i c a l t o h e r s t o r y , and I wanted t o underscore t h i s theme by s t a r t i n g and f i n i s h i n g h e r s t o r y with v i g n e t t e s t h a t i l l u s t r a t e d i t s importance t o her.  With J e s s ' s s t o r y I wanted from t h e o u t s e t t o  dismantle  any s t e r e o t y p e s t h e reader had about S i k h  women because none o f them apply t o J e s s .  When I  56  r e c o n s t r u c t e d Madeleine's s t o r y , s t o r y of the the  story.  s t o r y - t e l l i n g , as opposed t o j u s t Madeleine spent most of the time i n  interviews dispassionately t o her  a r t h r i t i s , and  cover the when an  r e a l story;  emotion and  the  the  telling our  relationship  t a l k served t o  t h i s became b l a t a n t l y  apparent  unleashed a f l o o d  the r e a l s t o r y s p i l l e d out.  In  of  writing  I t r i e d t o g i v e a sense of what happened i n  r e l a t i o n s h i p t o the much o v e r t  her  a l l the w h i l e her  i n t e r v i e w s as a way  of i l l u s t r a t i n g  her  r e a l s t o r y without r e s o r t i n g t o  too  interpretation.  In each of the the person, and story.  describing  innocent q u e s t i o n from me  t h i s story  I decided t o t e l l  s t o r i e s I t r i e d t o g i v e a sense of  of the  I included  language they used t o t e l l  their  a l l of t h e i r c a u s a l a t t r i b u t i o n s  and  t r i e d t o g i v e a sense of how  these a t t r i b u t i o n s came t o  be.  context f o r  The  s t o r i e s p r o v i d e the  a t t r i b u t i o n s and and  the  p r o v i d e d e t a i l s about t h e i r sources  t h e i r meanings. The  evolution  of c a u s a l models i s documented i n  two  ways i n t h i s study: the  and  d e t a i l , and  s t o r i e s p r o v i d e the  the bare-bones o u t l i n e s  of the  models c o n t a i n e d i n Appendix E f a c i l i t a t e  the  context causal  57  c l u s t e r i n g of themes and comparisons across  stories.  These o u t l i n e s c o n t a i n columns f o r key  events,  life  causes i n c o r p o r a t e d i n t o the model, i n f l u e n c e s i n c o r p o r a t e d i n t o the model, and causes r e j e c t e d .  An  i m p l i e d time l i n e runs down the l e f t - h a n d s i d e of  the  page, t o g i v e an i n d i c a t i o n of where these  various  elements were i n t r o d u c e d i n the course of the The  l i f e events g i v e some i n d i c a t i o n of what  happening around the time each element  illness. was  was  incorporated. From these o u t l i n e s I began t o c l u s t e r c a u s a l themes.  The  a t t r i b u t i o n s f e l l very e a s i l y i n t o  p h y s i c a l , p s y c h o l o g i c a l , and metaphysical  themes.  I  s u b d i v i d e d these themes i n t o one more l e v e l ; f o r example, w i t h i n the p h y s i c a l theme t h e r e were causes t h a t were "from the o u t s i d e " (e.g., v i r u s e s , p h y s i c a l abuse), " c o n s t i t u t i o n a l "  (e.g., g e n e t i c , " i n your  system"), r e f l e c t i v e of "the way menopausal, overweight), are doing" inclement  (e.g.,  and r e f l e c t i v e of "what you  (e.g., working too hard, working i n conditions).  A l l of these themes and  themes are very l o w - i n f e r e n c e ; to  you a r e "  sub-  they d i d not r e q u i r e  make s u b j e c t i v e i n t e r p r e t a t i o n s of the data  or  me  58  d i f f i c u l t d e c i s i o n s about which theme o r sub-theme a p a r t i c u l a r cause should f a l l under.  Appendix F  c o n t a i n s a summary o f the elements c o n t a i n e d w i t h i n the themes and sub-themes. From t h i s summary o f causes and i n f l u e n c e s I c o n s t r u c t e d a "general s t o r y " o f the development o f c a u s a l models f o r a r t h r i t i s .  T h i s process was  f a c i l i t a t e d by the f a c t t h a t a c r o s s s t o r i e s t h e c a u s a l models developed  i n a f a i r l y t y p i c a l way,  first  i n c o r p o r a t i n g the p h y s i c a l , then the p s y c h o l o g i c a l , then t h e n o o l o g i c a l .  The c h a l l e n g e i n c o n s t r u c t i n g t h e  g e n e r a l s t o r y was a t once t o i l l u m i n a t e the s i m i l a r i t i e s and t h e d i f f e r e n c e s a c r o s s s t o r i e s . data l e n t themselves  The  w e l l t o t h i s approach because the  framework was s i m i l a r a c r o s s s t o r i e s , but t h e elements w i t h i n the framework v a r i e d w i d e l y . Summary The g e n e r a l d i r e c t i o n o f p s y c h o s o c i a l r e s e a r c h i n RA i s toward i n c r e a s i n g l y complex s t a t i s t i c a l of data t h a t measures extremely experience o f t h i s d i s e a s e .  s p e c i f i c aspects o f t h e  I undertook t h i s  with the b e l i e f that a d i f f e r e n t  treatment  study  methodological  approach would p r o v i d e f r e s h i n s i g h t s i n t o l i v i n g  with  59  RA,  and, i n p a r t i c u l a r , would i n c r e a s e our  understanding of the way T h i s study demonstrates  people develop c a u s a l models. not o n l y t h a t c a u s a l models are  more complex than e x i s t i n g l i t e r a t u r e would suggest, but a l s o t h a t i n - d e p t h q u a l i t a t i v e methods are s u i t e d t o t h i s type of i n q u i r y .  60 Chapter IV:  Results  Diana S h o r t l y before  Diana's b i r t h i n 1942,  her  family  t r a v e l l e d from t h e i r home i n B r i s t o l , England, t o Bath, because t h e i r home c i t y was  being bombed.  Her  mother  was  admitted t o a h o s p i t a l f o r the impending b i r t h .  The  n i g h t Diana was  born, the h o s p i t a l was  Diana's f a t h e r stayed w i f e and  new  c h i l d , and  a t the h o s p i t a l w i t h h i s  s a i d t o h i s wife  the baby are going t o be k i l l e d , you."  The  bombed.  " i f you  I want t o be  The  with  wing t h a t Diana's f a m i l y i n h a b i t e d  spared, whereas the r e s t of the h o s p i t a l was  and  was destroyed.  circumstances of Diana's dramatic a r r i v a l  the world were r a r e l y d i s c u s s e d only m a t t e r - o f - f a c t l y .  Hers was  i n her f a m i l y , and  Despite  then  a family that  p r e f e r r e d not t o make a f u s s about hardship an i n e v i t a b l e p a r t of  into  f o r i t was  life.  the f a c t t h a t Diana was  England, she remembers o n l y one  born i n t o war-time  p e r i o d d u r i n g which her  f a m i l y s u f f e r e d some d i f f i c u l t y t h a t made any impression  on her. was  When she was  grandfather,  who  the f a m i l y .  Her mother had  16,  her f r a t e r n a l  dying of cancer, came t o l i v e w i t h reasoned t h a t she would be  61 w e l l - a d v i s e d t o take i n her f a t h e r - i n - l a w so t h a t when her own  mother became i l l she would be e n t i t l e d t o a  s i m i l a r arrangement.  Diana does not r e c a l l how  her  f a m i l y d e a l t e m o t i o n a l l y w i t h the a d d i t i o n t o the household of her dying g r a n d f a t h e r ,  but she does  remember h e r s e l f a " l i t t l e b i t c h , " s a y i n g t o her mother " w e l l i f he's  s t a y i n g here I'm  going!".  I t seemed t h a t  each of the f a m i l y members concerned themselves p r i m a r i l y with the p e r s o n a l p r a c t i c a l i t i e s o f t h i s situation. Diana's f i r s t a r t h r i t i s symptoms appeared i n when she was  1972  30 years o l d , s h o r t l y a f t e r the b i r t h of  her o n l y b i o l o g i c a l c h i l d .  She does not  h e r s e l f p a r t i c u l a r l y maternal,  and  consider  f e l t pushed i n t o  motherhood by s o c i a l e x p e c t a t i o n ; as w e l l , she and  her  husband were s t r u g g l i n g f i n a n c i a l l y a t the time, so baby's a r r i v a l was At f i r s t one  the  quite s t r e s s f u l . arm was  badly a f f e c t e d , "almost as  though i t were p a r a l y z e d " ; then, she began t o f e e l whenever she bumped her f i n g e r s and t o e s .  The  pain  doctor  t o l d her "you've got p l a i n o l d a r t h r i t i s — y o u haven't got rheumatoid which w i l l c r i p p l e you".  She  understood  t h i s t o mean t h a t she o n l y had o s t e o a r t h r i t i s ,  the  62  "wear-and t e a r " form of a r t h r i t i s t h a t comes w i t h or i n j u r y , and t h i s r e l i e v e d  age  her.  Diana responded, "oh g o o d — I can put up w i t h the p a i n , as long as I don't get any c r i p p l i n g or deformities."  For the f i r s t two years she regarded  a r t h r i t i s as merely  "annoying,"  her  although, i n  r e t r o s p e c t , she says many of the t a s k s a s s o c i a t e d w i t h c a r i n g f o r a s m a l l c h i l d were In 1974 child,  difficult.  Diana moved t o Canada w i t h her husband and  and came under the c a r e of a new  not suspect rheumatoid  a r t h r i t i s either.  when he went away, and was  doctor. I t was  He d i d only  r e p l a c e d by another d o c t o r ,  t h a t a c o r r e c t d i a g n o s i s was  made.  T h i s temporary  d o c t o r took one  look a t her s w o l l e n knee and s a i d "I  know rheumatoid  a r t h r i t i s when I see i t , and you've got  it."  He recommended immediate admission t o  G.F.  Strong, the p r o v i n c i a l r e h a b i l i t a t i o n c e n t r e . Again, p r a c t i c a l c o n s i d e r a t i o n s took c e n t e r - s t a g e as Diana's parents were coming from England week v i s i t .  E v e n t u a l l y she was  for a six-  admitted t o h o s p i t a l ,  and when her physiotherapy program f a i l e d t o achieve s a t i s f a c t o r y r e s u l t s , she went f o r knee s u r g e r y .  63  At the time, Diana had no i d e a what had caused or exacerbated her a r t h r i t i s . of i t ,  and accepted t h a t , l i k e m u l t i p l e s c l e r o s i s ,  a r t h r i t i s was known.  She had no f a m i l y h i s t o r y  simply a d i s e a s e about which l i t t l e  She says now  [her] system,"  was  t h a t she must have "had i t i n  and t h a t the p h y s i c a l and  emotional  s t r e s s of having a c h i l d probably t r i g g e r e d i t . A f t e r Diana was  diagnosed as having  a r t h r i t i s , she r e c a l l e d t h a t when she was  rheumatoid an a d o l e s c e n t  she had had symptoms c o n s i s t e n t with t h i s d i a g n o s i s . She was  always extremely t i r e d , and found i t necessary  t o s l e e p i n the a f t e r n o o n s .  She r e c a l l s p a i n upon  k n e e l i n g i n the bathtub, and p a i n i n her c h e s t t h a t now  a t t r i b u t e s t o inflammations of the j o i n t s t h a t  the sternum t o the r i b s and c l a v i c l e s , d i d not know e x i s t e d i n y e a r s p a s t .  joints that  she join she  So having the  c o r r e c t d i a g n o s i s allowed her t o make sense of symptoms t h a t p r e v i o u s l y she had t r i e d t o i g n o r e . When Diana was c e n t r e , she saw  admitted t o the r e h a b i l i t a t i o n  s e v e r a l o l d e r a r t h r i t i s p a t i e n t s who  were c o n f i n e d t o w h e e l c h a i r s .  Upset by the  ravages  t h a t had been wreaked on these people by the v e r y d i s e a s e she knew she had, she denied the p o s s i b i l i t y  64 t h a t she might become s i m i l a r l y a f f e c t e d .  She  a t t r i b u t e d t h e i r severe d i s a b i l i t y t o poor medical a d v i c e : i n the 1940s and 1950s they were t o l d t o j u s t go t o bed.  Looking a t them she thought, "oh,  never p r o g r e s s t o t h a t . " thought then, she now denial."  She was  I'll  R e f l e c t i n g on what she  says "I guess you're i n a form of  c o n f i d e n t then t h a t the new  medical  wisdom t h a t p r e s c r i b e d a balanced program of r e s t  and  e x e r c i s e would keep her from becoming s e r i o u s l y disabled. Diana had one roommate i n G.F. developed a p a r t i c u l a r fondness.  Strong f o r whom she  T h i s woman was more  s e v e r e l y a f f e c t e d by her a r t h r i t i s than Diana was  at  the time, and Diana would h e l p her w i t h many of her daily tasks.  Now,  o t h e r s do f o r her what she once d i d  f o r her roommate.  "You don't r e a l i z e t h a t p r o g r e s s i o n  i s going t o come t o you," she now  says.  "When i t does  you r e a l i z e t h a t you don't have as much c o n t r o l over your body as you t h i n k you do...  Some t h i n g s you can't  c o n t r o l by p o s i t i v e t h i n k i n g . " A f t e r her knee s u r g e r y , Diana f u n c t i o n e d r e l a t i v e l y w e l l u n t i l about 1979, f e e t had worsened c o n s i d e r a b l y .  by which time her She was  determined t o  65  wear " n i c e shoes," however, and was d e l i g h t e d when she d i s c o v e r e d t h a t t h e r e was an o p e r a t i o n t h a t would f i x her f e e t .  She had t h i s s u r g e r y , as w e l l as another  knee o p e r a t i o n , and again she was a b l e t o c o n t i n u e w i t h her r e g u l a r a c t i v i t i e s . Diana i s a g r e a t l o v e r o f dogs, and d u r i n g t h e e a r l y 1980s she took two o f h e r t h r e e dogs t o extended care homes on a r e g u l a r b a s i s t o do p e t therapy.  She  was a c t i v e i n o t h e r v o l u n t e e r p u r s u i t s as w e l l : she was i n v o l v e d i n h e r c h i l d r e n ' s s c h o o l , i n Beavers, and i n the Welcome Wagon, and she was a b l o c k parent c o o r d i n a t o r . She a l s o t r i e d t o take courses a t Douglas C o l l e g e , b u t found t h a t they made h e r t o o t i r e d . Diana remembers 1984 as t h e landmark year when t h e " f a t i g u e r e a l l y s t a r t e d t o s e t t l e i n . " One o f her dogs had puppies, and t h i s experience took her t o t h e p o i n t of exhaustion.  "I c o u l d n ' t do t h a t a g a i n , " she says.  "That's how I know t h a t i n '84 f a t i g u e caught up w i t h me."  She says now t h a t she was doing t o o much.  "You're t o l d t o r e s t , but you want t o keep going.  I  don't always r e s t when I know I s h o u l d . " Since t h e time t h a t Diana's way o f l i f e began t o be a l t e r e d by her a r t h r i t i s , t h e q u e s t i o n "why me?" has  66  weighed h e a v i l y on her mind.  "When I d i e , i f t h e r e ' s a  heaven and I go up t h e r e , t h e f i r s t q u e s t i o n I'm gonna ask  *why d i d I g e t t h i s ? ' "  The j o v i a l i t y t h a t had  c h a r a c t e r i z e d Diana's s t o r y t e l l i n g f e l l away a f t e r she said this.  "I say i t i n a joke context, b u t , I mean,  i t ' s k i n d o f , s o r t o f , I'm s e r i o u s . " confused  She i s e s p e c i a l l y  when she t h i n k s about a l c o h o l i c s and smokers,  and o t h e r s who abuse t h e i r bodies, y e t a r e seemingly h e a l t h y : "why do they g e t away with i t . . . t h a t ' s not fair,  is it?" Although she was r a i s e d t o b e l i e v e i n God, Diana  now c o n s i d e r s h e r s e l f an a g n o s t i c , perhaps because o f the s u f f e r i n g she has experienced s u f f e r i n g she has seen i n o t h e r s .  h e r s e l f , and t h e " I f t h e r e ' s a God up  t h e r e , why i s t h e r e a l l t h i s s u f f e r i n g i n t h e world?", she asks.  The search f o r t h e answer t o t h i s  question  continues,  and t o date t h e o n l y answer t h a t she can  muster i s t h a t people a r e h u r t through " q u i r k s o f fate." Diana s t r u g g l e s t o q u e l l t h e resentment she f e e l s about having  arthritis.  "Deep down I can be q u i t e  b i t t e r about being lumbered with t h i s , " she says, but  67  a t t h e same time she r e c o g n i z e s t h a t "you c a n ' t l i v e bitterness." For Diana, one o f t h e most d i f f i c u l t a s p e c t s o f having a r t h r i t i s i s the f a c t t h a t the seemingly normal and modest e x p e c t a t i o n s one has f o r one's l i f e w i l l n o t be met.  In the e a r l y days o f motherhood, she dreamed  of t h e day when t h e c h i l d r e n were grown and gone, when she would be f r e e t o pursue her own i n t e r e s t s , but " i t d i d n ' t work t h a t way."  Though her d e s i r e s were "not  grand... j u s t day-to-day" t h i n g s l i k e h i k i n g and d i g g i n g i n t h e garden, she has had t o s e t t l e f o r l e s s than she would have l i k e d .  She now d e r i v e s p l e a s u r e  from her dogs, from f e e d i n g w i l d b i r d s , and from b e l o n g i n g t o garden and n a t u r a l i s t  clubs.  Diana has two d i s t i n c t groups o f f r i e n d s : those w i t h a r t h r i t i s , and those without.  With the l a t t e r  group she i s a b l e t o escape a focus on her i l l n e s s , and pursue t h e i n t e r e s t s t h a t preceded t h e onset o f a r t h r i t i s ; w i t h t h e former group she g e t s genuine understanding of t h e p h y s i c a l , s o c i a l , and emotional consequences  o f having a r t h r i t i s , and i s a b l e t o  c o n t r i b u t e through her l e a d e r s h i p o f a r t h r i t i s support groups.  68 During our i n t e r v i e w s , Diana was  i n c l i n e d t o laugh  e a s i l y , and s e v e r a l times seemed t o a p o l o g i z e f o r what seemed t o her t o be complaining. she was  I t seemed t o me  that  s t r u g g l i n g with h e r s e l f t o m a i n t a i n the  appearance  of l i g h t h e a r t e d n e s s , but t h a t a f l o o d of  emotion was  b a r e l y c o n t a i n e d , p a r t i c u l a r l y when she  spoke of the l a c k of support from her husband. "Men  haven't got the same understanding of t h i n g s  as women do,"  she s a i d , then added, " a t l e a s t when  t h e y ' r e over 50 and E n g l i s h they haven't."  Although  these comments were made w i t h l a u g h t e r , l a t e r comments suggest t h a t she harbours g r e a t sorrow over the s t a t e of t h e i r r e l a t i o n s h i p .  She acknowledges t h a t i f she  d i d not have a r t h r i t i s she would probably have l e f t him,  so f r u s t r a t e d i s she by h i s emotional d i s t a n c e .  F e e l i n g t h a t t h i s o p t i o n i s c l o s e d t o her, she  seeks  s o l a c e i n s t e a d from her women f r i e n d s , from her dogs, and from the peace she f i n d s i n the outdoors. Marlene In 1978,  two weeks a f t e r her 30th b i r t h d a y ,  Marlene developed s w e l l i n g and p a i n i n the bottom of her f e e t .  A c a r e e r m i l i t a r y person, she l i v e d i n a  s o c i e t y i n c l i n e d , she says, t o a t t r i b u t e s i c k n e s s t o  69  e i t h e r smoking or overweight; t h i s i n c l i n a t i o n  delayed  her d i a g n o s i s , f i r s t by making her r e l u c t a n t t o complain f o r f e a r of being blamed f o r her and  condition,  second, by i n h i b i t i n g the d o c t o r s ' w i l l i n g n e s s t o  e n t e r t a i n the p o s s i b i l i t y of other e x p l a n a t i o n s . Marlene f i r s t sought medical a t t e n t i o n , she was t h a t her problems were caused by her being although she says t h a t she was  When told  overweight,  no more than 5 pounds  overweight, i f indeed she were overweight a t a l l . Marlene's mother and grandmother had rheumatoid a r t h r i t i s , so she was disease's  manifestations.  both  had  very f a m i l i a r w i t h  Yet, d e s p i t e t h i s , she  the  was  not prepared t o accept the p o s s i b i l i t y t h a t i t might be a r t h r i t i s , even when i t was her.  She  e v e n t u a l l y suggested t o  thought t o h e r s e l f t h a t "they d i d n ' t  know what they were t a l k i n g  about, t h a t i t was  some dreaded d i s e a s e t h a t wasn't a r t h r i t i s . "  really probably Asked  why  she would not c o n s i d e r the p o s s i b i l i t y t h a t i t might a r t h r i t i s , knowing t h a t her symptoms were not  be  unlike  her mother's, she responded, "because I d i d n ' t want i t . I mean I c o u l d see what i t d i d t o my  mom,  and  I didn't  p a r t i c u l a r l y want i t . " So a f r a i d was  she t h a t she  had  the same d i s e a s e t h a t her mother had,  she p r e f e r r e d t o  t h i n k t h a t she might have some "dreaded years l a t e r , when Marlene's symptoms of RA,  disease."  s i s t e r developed  Some  the  she engaged i n the same s o r t of d e n i a l ,  c l a i m i n g f o r 2 years t h a t she d i d not have a r t h r i t i s , t h a t i t was of  Marlene's Six  something e l s e , d e s p i t e her f u l l  knowledge  experience.  months a f t e r Marlene's  symptoms  first  appeared, a f t e r she had been f o r c e d t o take c o n s i d e r a b l e time from work, a c i v i l i a n d o c t o r , aware of  the h i s t o r y of RA  i n Marlene's  f a m i l y , and  having  made a d i a g n o s i s based on c l i n i c a l s i g n s , began t o t r e a t her f o r a r t h r i t i s . r e l u c t a n t , as was  Even then, Marlene  was  her s i s t e r years l a t e r , t o accept her  d i a g n o s i s u n t i l i t "showed up i n [her] b l o o d , " a r e f e r e n c e t o the appearance of a b l o o d f a c t o r o f t e n found i n RA  patients.  Once the p h y s i c a l evidence, the blood  factor,  had convinced Marlene of her d i a g n o s i s , she began t o t h i n k about why  she had developed  arthritis.  Aware  t h a t her d o c t o r had based her d i a g n o s t i c hunches on Marlene's  f a m i l y ' s medical h i s t o r y , she looked t o the  r o l e of g e n e t i c s , and came, with some a s s i s t a n c e from her d o c t o r , t o a c e r t a i n understanding.  I t i s "not  71 n e c e s s a r i l y h e r e d i t a r y because I've been t o l d it...  that  can run i n f a m i l i e s , b u t i t ' s not h e r e d i t a r y  because t h e r e i s a gene t h a t c a r r i e s . . . t h e a r t h r i t i s , or t h e rheumatoid a r t h r i t i s f a c t o r , and i f you i n h e r i t t h a t p a r t i c u l a r gene from... your parents, l i k e l y t o get i t . "  then you a r e  She has some i n k l i n g t h a t RA i s  a s s o c i a t e d w i t h a p a r t i c u l a r gene, and t h a t having t h e gene makes one more l i k e l y t o develop RA, b u t does n o t have t h e language t o express w e l l her theory  of genetic  transmission. In r e t r o s p e c t , Marlene looks back on t h e time d u r i n g which h e r a r t h r i t i s f i r s t developed as a s t r e s s f u l time.  She was a s i n g l e mother w i t h a f i v e -  y e a r - o l d son, and was among t h e f i r s t s i n g l e mothers t o l i v e i n housing designated  f o r m i l i t a r y f a m i l i e s . Her  s t r e s s o r s were many: she had s o l e r e s p o n s i b i l i t y f o r a young c h i l d , she l i v e d i n a s o c i e t y where t h e r e a r e few s i n g l e women, and fewer s i n g l e mothers, and she was regarded by other women i n h e r neighbourhood as a threat. for  Her 30th b i r t h d a y was something o f a c r i s i s  h e r as she f e a r e d t h a t she would never marry, and  now she wonders whether t h a t c r i s i s might have p r e c i p i t a t e d t h e onset o f h e r a r t h r i t i s .  72 Marlene's work was  extremely important t o her,  both because i t allowed her t o support h e r s e l f and her son, and because she took g r e a t p r i d e i n the q u a l i t y and q u a n t i t y of the work i t s e l f .  "I guess I t h r i v e  under s t r e s s a t work," she says, "and t h a t ' s the o n l y time I ' l l r e a l l y enjoy my  job i s when you g i v e me  too  much t o do and I have t o prove t o you t h a t I can get i t a l l done by myself." But the c u l t u r e o f Marlene's work environment not t o l e r a n t of weakness o r s i c k n e s s . was  d i f f e r e n t than a c i v i l i a n  was  F u r t h e r , the job  job; even those i n  a d m i n i s t r a t i v e and c l e r i c a l p o s i t i o n s were expected t o p a r t i c i p a t e i n p h y s i c a l e x e r c i s e and m i l i t a r y  parades.  "They don't want a bunch of s i c k i e s i n the m i l i t a r y , " she says. Marlene t r i e d f o r many years t o c a r r y her  full  work l o a d , and she managed t o be excused from e x e r c i s e and m i l i t a r y d r i l l s .  She kept her eye on the  20-year  mark, knowing t h a t then she would be a b l e t o c o l l e c t a pension.  E v e n t u a l l y , however, her d i s a b i l i t y was  apparent t h a t she was  so  c a l l e d b e f o r e a review board, and  asked t o s i g n a paper acknowledging t h a t she would have " c a r e e r and g e o g r a p h i c a l r e s t r i c t i o n s " because of her  73  arthritis.  She was not bothered by the g e o g r a p h i c a l  r e s t r i c t i o n s , as they were intended t o keep her near a l a r g e medical f a c i l i t y ;  she had no c h o i c e but t o accept  t h a t she would never be promoted because she needed h e r job. Marlene had gone from a h i g h - p r e s s u r e , r e s p o n s i b l e , and f u l f i l l i n g  j o b t o s o r t i n g m a i l and  p u t t i n g t h i n g s i n numerical o r d e r .  She was g i v e n t h e  o p t i o n o f working o n l y h a l f - d a y s , and, d i s c o u r a g e d by the m e n i a l i t y o f t h e work she was g i v e n , she d i d s o . But she f o r c e d h e r s e l f t o work i n the mornings r a t h e r than t h e a f t e r n o o n s , a time when she, l i k e most people w i t h a r t h r i t i s , have the most d i f f i c u l t y .  She wonders  now whether her c o n d i t i o n might be worse i f she had n o t f o r c e d h e r s e l f i n t h i s way. Marlene f e e l s t h a t s t r e s s g r e a t l y a f f e c t e d t h e course and s e v e r i t y o f her a r t h r i t i s .  Specifically,  the "mental s t r e s s " o f t r y i n g t o c o n c e a l her p h y s i c a l d i f f i c u l t i e s while producing copious amounts o f work "played havoc" w i t h her a r t h r i t i s , hospitalizations.  r e s u l t i n g i n a few  She a l s o b e l i e v e s t h a t weather has  some e f f e c t , though i n t h e o p p o s i t e d i r e c t i o n t o what  74 o t h e r s c l a i m ; when the sun s h i n e s she f e e l s  terrible,  but when the r a i n comes she r e c o v e r s . Marlene has o f t e n asked the q u e s t i o n "why p a r t i c u l a r l y when her p a i n was still  Though she  s t r u g g l e s w i t h the q u e s t i o n , her t e n t a t i v e answer  i s t h a t i t i s " j u s t the way is...  severe.  me?,"  t h i n g s are, the way  life  some are l u c k i e r than o t h e r s . " Marlene seems t o have the n o t i o n t h a t one's  willpower has an a f f e c t on one's p h y s i c a l s t a t u s . her mother, who  she says had worse a r t h r i t i s  Even  than  anyone she has seen, d i d not r e l y on a w h e e l c h a i r . i s n ' t the f u t u r e f o r me. people who never was  I w i l l never be l i k e  have t o s t a y i n w h e e l c h a i r s . . . my i n a wheelchair."  Her optimism  those  mother  a l s o stems  from her r e l a t i v e youth, and the f a c t t h a t she was by d o c t o r s i n the b e g i n n i n g t h a t i f she s t a r t e d medication immediately  "It  told  on  her a r t h r i t i s would "progress,  but [she] wouldn't be as bad o f f " . Marlene's unfounded.  f e a r s about never f i n d i n g a husband were  A man  who  b e f r i e n d e d her son through  the  B i g B r o t h e r s o r g a n i z a t i o n e v e n t u a l l y became her husband.  Her son i s now  ah a d u l t and has  moved away from h i s p a r e n t s ' home.  recently  75  Marlene has now  r e t i r e d , and i s a b l e t o c o l l e c t  her hard-won pension.  She p l a n s t o spend her  r e t i r e m e n t r e a d i n g , doing c r a f t s and v o l u n t e e r work, and t r a v e l l i n g with her husband.  The s t r u g g l e s of  being alone and of r a i s i n g a son alone, of t r y i n g t o c o n c e a l an i l l n e s s i n a s o c i e t y t h a t d i s a l l o w s p h y s i c a l weakness, of t a x i n g her body beyond i t s l i m i t s , and of having t o accept reassignment  t o meaningless  d e s p i t e her b e s t e f f o r t s , are now  behind  work  her.  Marlene maintained q u i t e a d i s c i p l i n e d , unemotional  tone i n our i n t e r v i e w s .  But when we were  f i n i s h e d , I n o t i c e d on her bedside t a b l e a book t h a t l a y w i t h i t s pages pressed open, i t s own concealed by a r e d p l a s t i c cover. was  cover  I asked her what she  r e a d i n g , and b l u s h i n g l y , she admitted t h a t i t was  romance n o v e l .  Although she had t o l d me  a  the f a c t s of  her f e a r s about being alone, t h a t novel and i t s d i s g u i s e seemed t o t e l l me of the f e a r s t h a t she had Marlene must s t i l l  something about the depths felt.  cope w i t h  flare-ups,  h o s p i t a l i z a t i o n s , and s u r g e r i e s , but the worst seems t o her t o be over, and she p l a n s t o savour the v i c t o r y .  76 Sophie In t h e l a t e 1940s, 79-year-old Sophie worked f o r the  Victorian  Order o f Nurses, as a nurse who c a r e d f o r  p a t i e n t s i n t h e i r own homes. in particular  She r e c a l l s one p a t i e n t  who had rheumatoid a r t h r i t i s , and who  r e q u i r e d a nurse t o a s s i s t h e r i n b a t h i n g .  "She was  propped up on a h o s p i t a l  bed i n her l i v i n g room w i t h  p i l l o w s a l l around her.  I ' l l never f o r g e t i t , " Sophie  says.  "Every b r e a t h she took she moaned.  my gosh, never l e t me g e t t h i s .  I thought,  Anything but t h i s . "  Twenty years o r so l a t e r , Sophie s u f f e r e d acute f l a r e u p s i n h e r j o i n t s over t h r e e c o n s e c u t i v e weekends. F i r s t h e r thumb f l a r e d , then h e r s h o u l d e r , then a t h i r d j o i n t she c a n ' t r e c a l l , and she knew t o go t o t h e d o c t o r r i g h t away.  Her f a m i l y d o c t o r booked an  appointment w i t h an i n t e r n i s t two weeks from then. When t h e i n t e r n i s t examined h e r he was alarmed enough t o march h e r immediately next door t o see a rheumatologist.  Her RA was diagnosed and she was t o l d  t h a t she would need t o be admitted t o h o s p i t a l  for a  week t o " s t a b i l i z e . " A f t e r r e t u r n i n g home from h o s p i t a l  Sophie  c o n t i n u e d t o worsen as she and h e r d o c t o r t r i e d t o f i n d  77 medications t h a t she c o u l d t o l e r a t e . months l a t e r ,  Two o r t h r e e  having met w i t h l i t t l e s u c c e s s , h e r  r h e u m a t o l o g i s t t o l d her she needed t o go i n t o a c o n v a l e s c e n t home f o r a month o r so. cry  and s a i d " I can't do t h a t .  home."  She s t a r t e d t o  I have c h i l d r e n a t  But her 10-year^old daughter  and 15-year-old  son f i n a l l y became t h e r e a s o n f o r her admission: she knew she had t o " f o r g e t about e v e r y t h i n g except g e t t i n g b e t t e r " because her c h i l d r e n needed h e r . During h e r admission i n t h e c o n v a l e s c e n t home and a f t e r h e r r e t u r n home she had h e r worst  shoulder  i n j e c t e d w i t h c o r t i s o n e two o r t h r e e times, and she had a "very good" p h y s i o t h e r a p i s t who bent her shoulders back u n t i l she screamed.  She a l s o had h e r knees  a s p i r a t e d and i n j e c t e d w i t h c o r t i s o n e every s i x weeks. But mainly she took t o b e d r e s t , a p r a c t i c e t h a t i s v e r y much discouraged now. When h e r a r t h r i t i s was new, Sophie h e r s e l f l e s s w i t h t h e fundamental  concerned  causes o f a r t h r i t i s  than w i t h what t h i n g s made h e r f e e l b e t t e r o r worse. The one t h i n g t h a t seemed t o most i n f l u e n c e t h e s e v e r i t y o f her a r t h r i t i s was heat.  She spent h e r  f i r s t summer w i t h a r t h r i t i s a t h e r c o u s i n ' s house where  78 she c o u l d l a y on the couch and enjoy the a i r conditioner.  "The hot weather k i l l s me,"  she says.  "That's the worst t h i n g t h a t happens t o me, humid weather." of  the hot,  T h i s b e l i e f i n the d e t r i m e n t a l e f f e c t s  heat would l e a d her, some years l a t e r , t o move from  her home p r o v i n c e of Quebec t o the more moderate c l i m a t e of the West c o a s t .  Even here she f i n d s h e r s e l f  spending time i n the parkade below her condominium, t r y i n g t o c o o l down. For  the f i r s t few years Sophie spent much of her  days l y i n g i n bed.  Yet, anxious t o c o n c e a l the  s e r i o u s n e s s of her i l l n e s s from her c h i l d r e n ,  she  always arose i n t h e i r presence, and always made d i n n e r for  them i n the evenings.  t h a t she was  She h i d from them the f a c t  t a k i n g medications because  she f e a r e d ,  g i v e n the s o c i a l c l i m a t e of the s i x t i e s , t h a t they would be more apt t o t u r n t o drugs themselves  i f they  knew. Sophie's f r i e n d s t r i e d t o coax her i n t o participation.  social  "They say w e l l a l o n g walk w i l l do  good, o r come over, we're having a p a r t y , i t ' l l good t o get out."  do  you you  But Sophie became very f i r m i n  t u r n i n g down these i n v i t a t i o n s , f e a r f u l t h a t e x c e s s i v e  79  p h y s i c a l a c t i v i t y would exacerbate her  arthritis.  Though she has become much more aware of the need f o r p h y s i c a l a c t i v i t y , she s t i l l  struggles with t r y i n g to  s t r i k e a h e a l t h y balance between r e s t and  activity:  The h a r d e s t t h i n g about a r t h r i t i s i s l e a r n i n g t o balance what you can do and what you want t o do. I'm always t e s t i n g the waters, always wanting t o do a l i t t l e more than I s h o u l d . You know I always wanted t o climb t h a t h i l l over t h e r e , or walk an e x t r a b l o c k . That way, I found out what I c o u l d do and what I c o u l d n ' t do. Some years i n t o the course of her d i s e a s e , Sophie's i d e a s about i t s cause s t a r t e d t o take shape. At  f i r s t she looked t o p h y s i c a l causes, and p o i n t e d  p a r t i c u l a r l y t o her enthusiasm  for tennis.  She  had  been p l a y i n g t e n n i s f o r a year or two b e f o r e the onset of  her a r t h r i t i s a f t e r a p e r i o d of r e l a t i v e  inactivity,  and says t h a t perhaps she "went a t i t too s t r o n g " . F u r t h e r r e f l e c t i o n l e d t o the i n c o r p o r a t i o n of s t r e s s i n t o Sophie's e x p l a n a t o r y model. around the time of onset she was  She says t h a t  having problems i n her  marriage because of her j e a l o u s husband.  She now  says  t h a t " e v e r y t h i n g s o r t of came t o g e t h e r a t the same time" t o produce her  arthritis.  Sophie had a l s o come t o n o t i c e t h a t the s e v e r i t y of  her a r t h r i t i s was  i n f l u e n c e d by changes i n  80  barometric p r e s s u r e , an i d e a t h a t i s commonly h e l d by people w i t h a r t h r i t i s , and a n o t i o n t h a t was r e i n f o r c e d by her own o b s e r v a t i o n . Over t h e y e a r s , Sophie was i n and out o f h o s p i t a l many times, and underwent s e v e r a l o p e r a t i o n s .  She says  t h a t her h o s p i t a l i z a t i o n s reminded her o f how " l u c k y [she was] g e t t i n g a f t e r t h e a r t h r i t i s r i g h t away" because she saw i t s d e v a s t a t i o n i n people whose treatment was delayed. Sophie was a l s o witness i n h o s p i t a l t o the s t r u g g l e s o f many young people who had been i n j u r e d i n accidents. you're  Of them she says, "you d r i v e t o o f a s t ,  l i a b l e t o get i n t o t r o u b l e .  you're going t o g e t burned."  You l i g h t a match,  Thus, she sees t h e  m i s f o r t u n e s o f many o t h e r s as the l o g i c a l outcomes o f t h e i r behaviour.  Yet a t t h e same time she s h i e s away  from any n o t i o n s o f blameworthiness,  p r e f e r r i n g t o look  simply a t t h e l i n k s i n t h e c a u s a l c h a i n s r a t h e r than the c h a r a c t e r o f those a f f e c t e d .  T h i s k i n d of  t h i n k i n g , she b e l i e v e s , may have been p a r t l y an outcome of her experiences as a nurse. T h i s detached  a t t i t u d e toward s u f f e r i n g may a l s o  have been f o s t e r e d by the emotional c l i m a t e o f her  81 family-of-origin.  The f a m i l y d i d not have any m y s t i c a l  b e l i e f s about c a u s a t i o n , and shows o f s t r o n g were extremely r a r e .  emotion  Sophie r e c a l l s o n l y one event  d u r i n g which she witnessed t h e g r i e f o f a f a m i l y member.  She had r e t u r n e d home from overseas s h o r t l y  b e f o r e t h e end o f t h e second world war.  Though two o f  her b r o t h e r s had been k i l l e d i n t h e war, t h e f a m i l y would n o t speak o f them, i n s t e a d h o l d i n g t h e i r t o themselves.  sorrow  One day Sophie and h e r mother had a  s l i g h t disagreement, but so c l o s e t o t h e s u r f a c e were people's emotions t h a t t h e disagreement sent her mother c r y i n g t o t h e u p s t a i r s bedroom. of i t :  But t h a t was t h e end  "somebody s a i d she'd never c r i e d a f t e r t h e war."  Sophie l i k e w i s e took an unemotional approach t o her a r t h r i t i s .  Asked whether she had ever asked "why  me?" she frowned and r e c o i l e d , h a s t i l y d i s m i s s i n g t h e u t i l i t y o f such q u e s t i o n s .  "I'm a r e a l i s t and i t would  never occur t o me t o say *why me?'" she says  adamantly.  "My p h i l o s o p h y i s a problem i s something t h a t you do something about.  You d e a l w i t h t h i n g s as they come  along as w e l l as you can."  An a t h e i s t , she does n o t  look t o t h e s u p e r n a t u r a l t o e x p l a i n events b u t i n s t e a d e x p l a i n s t h e u n e x p l a i n a b l e i n terms o f chance.  "People  82 get a l l s o r t s o f t h i n g s and a l l s o r t s o f t h i n g s happen because, l o t s o f t h i n g s happen p e r chance. go around one c o r n e r i n s t e a d o f another  I mean you  c o r n e r and what  happens." Eleven years a f t e r t h e onset o f h e r a r t h r i t i s , a t the age o f 62, Sophie separated from her husband.  This  was a time o f t r a n s f o r m a t i o n f o r her; buoyed by h e r newfound freedom, she flew t o Europe, purchased  a  E u r o r a i l pass, and t r a v e l l e d t h e c o n t i n e n t on h e r own, t e s t i n g t h e l i m i t s o f her p h y s i c a l endurance.  "I  c e r t a i n l y l e a r n e d t h a t I c o u l d look a f t e r myself t h a t t r i p , " she says.  with  Though she has been a b l e t o  t r a v e l l e s s i n t h e p a s t few y e a r s , she s t i l l  attends  j a z z f e s t i v a l s a l l over North America, s a t i s f y i n g h e r l o v e f o r music through  l i s t e n i n g and s t u d y i n g , r a t h e r  than p l a y i n g as she d i d i n t h e p a s t . Humour p l a y s a b i g p a r t i n Sophie's  life,  and she  t r i e s a t a l l times t o laugh a t h e r s e l f and h e r situation: I had a b l a c k l a b dog f o r 22 years and I f i n a l l y had t o put him down — he was g e t t i n g t o o o l d . He used t o go down t h e stone s t e p s from our f r o n t door t o our sidewalk, he used t o go down t h e s t e p s j u s t l i k e me. I mean he used t o go down w i t h h i s l e g s bent l i k e t h a t . I used t o stand and laugh. He was j u s t l i k e me.  83 Overall,  Sophie f e e l s she has gained much from h e r  experience o f a r t h r i t i s .  Though she has not undergone  a profound s h i f t i n h e r world view because she has a r t h r i t i s , h e r focus has s h i f t e d , she says f o r t h e better: When you've had t h i s happen t o you i t ' s u s u a l l y good. I f you come through. You know i f you work i t through you're b e t t e r o f f because you've l e a r n e d an awful l o t . Understanding o t h e r people. Not o n l y i n t h e p a i n area o f o t h e r people. I t ' s understanding o f o t h e r people g e n e r a l l y , because you're l y i n g back and o b s e r v i n g a l o t . I mean you're s i t t i n g back and you're o b s e r v i n g . You're not r u s h i n g around and doing so many t h i n g s and keeping busy. Your h o r i z o n s a r e widened i n t h a t way. T r i v i a l i t i e s go by t h e board. Tamara F i f t e e n years ago, a t t h e age o f 36, Tamara went t o bed a v e r y h e a l t h y person and woke up t h e next morning "completely p a r a l y z e d i n a l l [her] major l i k e knees and f e e t and elbows and hands." she says, d o c t o r s thought  joints  At f i r s t ,  she had blood c l o t s , b u t  a f t e r r u l i n g out t h i s p o s s i b i l i t y they were a t a l o s s t o e x p l a i n h e r symptoms.  She had been l i v i n g i n  n o r t h e r n Quebec and was sent t o Montreal General, t h e c l o s e s t major medical c e n t r e , where she was e v e n t u a l l y diagnosed  as having p o l y a r t h r i t i s .  84  Tamara had  r e c e n t l y had  v a c c i n a t i o n , and the  "Rh"  a tuberculosis  i t i s f o r t h i s reason, she says,  f a c t o r d i d not show up i n her blood,  p r e c l u d i n g an i n i t i a l d i a g n o s i s arthritis.  "The  that  thus  of rheumatoid  d o c t o r s must be t o t a l l y s c i e n t i f i c "  and  r e f r a i n from c a l l i n g i t rheumatoid u n t i l a f t e r the blood  f a c t o r shows up,  an event t h a t c o u l d ,  according  t o Tamara, f o l l o w the TB v a c c i n a t i o n by 5 or 10 Nevertheless,  Tamara says she knew she had  because her f a t h e r had " g e n e t i c t e s t i n g " had gene" f o r RA.  She  years.  shown i t s symptoms, and  RA because  r e v e a l e d t h a t she c a r r i e d "the  believes that t h i s  genetic  p r e d i s p o s i t i o n , combined w i t h the f e a r f u l l y c o l d c o n d i t i o n s i n which she had worked, and the f a c t t h a t she had  been an a t h l e t e , caused the a r t h r i t i s t o  be  "activated." The  onset of Tamara's a r t h r i t i s was  course was  rapid.  sudden and i t s  I t completely destroyed  j o i n t s w i t h i n the f i r s t e a r l y j o i n t replacement.  two  years,  that  c o u l d be a t t r i b u t e d t o  f o r she had  hysterectomy nine years e a r l i e r .  her  n e c e s s i t a t i n g very  Doctors suggested t o her  the r a p i d i t y of i t s p r o g r e s s i o n her l a c k of estrogen,  some of  undergone a  85  Before her i l l n e s s Tamara had Roman C a t h o l i c .  She  had  been a d i s s a t i s f i e d  been, by her own  description,  very s t a t u s - c o n s c i o u s ,  very m a t e r i a l i s t i c ,  concerned w i t h her own  p h y s i c a l beauty.  overly  She  was,  the same time, " s e a r c h i n g  f o r the answers t o l i f e  not g e t t i n g them... I had  trouble believing i n a  who  c r e a t e d a l l t h i n g s and  h e l l f o r e t e r n i t y , " she thought God  was  says.  female I c o u l d n ' t  t r o u b l e d u r i n g wars.  t o i t s God  God  "I d i d n ' t l i k e God.  One  I  As a C a t h o l i c I  thought the h i g h e s t you c o u l d go was  a l s o had  and  sent X number of people t o  a male c h a u v i n i s t .  the f a c t t h a t I'm  at  t o be a Pope,  and  even make i t .  I  country would pray  and the other country would pray t o i t s God,  and whoever won,  w e l l t h a t was  So I d i d n ' t l i k e God  the s i d e God  favoured.  very much."  While she undergoing d i a g n o s t i c t e s t s , Tamara  was  i n a h o s p i t a l i n which many of the e l d e r l y p a t i e n t s were cared who  f o r by p r i v a t e nurses.  worked the n i g h t s h i f t was  One  of these nurses  about the same age  Tamara, and took a s p e c i a l i n t e r e s t i n her,  bringing  her books and t a l k i n g w i t h her long i n t o the T h i s nurse i n t r o d u c e d  night.  her t o the w r i t i n g s of Edgar  Cayce, whose ideas about r e i n c a r n a t i o n and  as  natural  86  j u s t i c e provided  some e x p l a n a t i o n s  about the i n j u s t i c e  she saw i n the world, and were an important stone t o some l a t e r s p i r i t u a l  stepping  beliefs.  A couple o f years i n t o her i l l n e s s Tamara incorporated theory  p s y c h o l o g i c a l s t r e s s i n t o her c a u s a l  as w e l l .  c e r t a i n diseases  She had n o t i c e d t h a t the onset o f such as cancer was o f t e n preceded by a  period of excessive preceding  stress.  Looking back a t t h e p e r i o d  t h e onset o f her a r t h r i t i s she was a b l e t o  p o i n t t o s e v e r a l f a c t o r s which, taken t o g e t h e r , had produced mental and p h y s i c a l exhaustion f o r her. had  She  r e c e n t l y adopted two young c h i l d r e n , 15 months  a p a r t , and she was t a k i n g f o u r u n i v e r s i t y courses a t n i g h t w h i l e working f u l l - t i m e as a t e a c h e r .  The b e l i e f  i n the s t r o n g i n f l u e n c e o f p s y c h o l o g i c a l and p h y s i c a l s t r e s s on t h e course o f her a r t h r i t i s has been r e i n f o r c e d f o r her s e v e r a l times over the course o f h e r d i s e a s e as f l a r e u p s have always c o i n c i d e d w i t h of e x c e s s i v e  periods  stress.  A d o c t o r once t o l d Tamara t h a t , l i k e cancer and MS, RA i s one o f the "anger-diseases."  That i s , people  who c a r r y around a l o t o f anger, h o s t i l i t y , and b i t t e r n e s s are vulnerable  t o these p a r t i c u l a r d i s e a s e s .  87  She  does not see h e r s e l f as angry, h o s t i l e , o r b i t t e r ,  but i n s t e a d t h i n k s o f a r t h r i t i s as an " i r r i t a t i o n d i s e a s e " o r a "worry-disease." A few years a f t e r t h e onset o f Tamara's a r t h r i t i s , a rheumatologist  made an a d d i t i o n a l d i a g n o s i s o f  f i b r o m y a l g i a , based on t h e e x c r u c i a t i n g p a i n she f e l t at  key pressure  back.  p o i n t s i n her neck, s h o u l d e r s , and  T h i s new problem complicated  her treatment as  the k i n d s o f t h e r a p i e s t h a t a l l e v i a t e d the f i b r o m y a l g i a were o f t e n ones t h a t exacerbated her RA. not t e r r i b l y perturbed  Tamara was  by t h i s new development,  however, f e e l i n g t h a t RA and f i b r o m y a l g i a were both forms o f a r t h r i t i s , and t h a t t h e d i f f e r e n t l a b e l s were meaningful o n l y t o t h e d o c t o r s . At around t h i s time, a l i f e - c h a n g i n g event occurred  one day when f r i e n d s came t o v i s i t .  presence Tamara t r i e d t o do some l i t t l e made very d i f f i c u l t by her a r t h r i t i s .  In t h e i r  task t h a t was F r u s t r a t e d , she  made a comment t o t h e e f f e c t t h a t she must have done something r e a l l y awful i n a past l i f e t o have been i n f l i c t e d on her. turned  for this  disease  These f r i e n d s , i t  out, were f o l l o w e r s o f Eckankar, a r e l i g i o n  teaches t h a t our present  that  l i v e s a r e a f f e c t e d by our p a s t  88 l i v e s , t h a t the d i f f i c u l t i e s v i s i t e d upon us now  are  the n a t u r a l consequence of wrongdoing i n our p a s t lives. Tamara was  c a p t i v a t e d by the seemingly  answers t h a t Eckankar  provided.  t h a t I have i n t h i s l i f e , caused from another l i f e , "  I was  logical  "A whole l o t of f e a r s shown t h a t they were  she says.  "For i n s t a n c e , I  never t r u s t e d my husband and I had no reason t o m i s t r u s t him,  so I asked why.  And  i n p a s t l i v e s we've  been m a r r i e d s e v e r a l times, and i n a p a s t l i f e he was womanizer.  So I've c a r r i e d t h a t over.  t h a t I thought  x  a  When I r e a l i z e d  w e l l , t h a t ' s i n the p a s t and I can  drop  it'." Devotees of Eckankar minutes every day.  p r a c t i c e contemplation f o r 28  Through contemplation they are  shown the p a s t and how  i t affects l i f e  l i k e l o o k i n g a t a v i d e o , " Tamara says.  now.  "It is  "Even though  you are a d i f f e r e n t person, e i t h e r male or female, d i f f e r e n t s i z e , d i f f e r e n t l o o k s , e v e r y t h i n g , you recognize yourself."  I t was  do  through one of the  r e v e l a t i o n s t h a t came i n a p e r i o d of contemplation, t h a t Tamara l e a r n e d why fibromyalgia.  she had been s t r u c k w i t h RA  In a p a s t l i f e ,  she says, she was  a  and  89  Roman s o l d i e r who  had thrown C h r i s t i a n s t o the  For t h a t she must pay r e t r i b u t i o n . o t h e r s i s done unto you. j u s t paying o f f my  lions.  "What you do unto  So I b e l i e v e r i g h t now  karmic c r e d i t  I'm  card."  Tamara's day-to-day l i f e changed i n tandem with her s p i r i t u a l l i f e .  She  had been a s c h o o l t e a c h e r f o r  a number of years but the g r e a t f a t i g u e t h a t accompanied her a r t h r i t i s had teaching.  f o r c e d her t o q u i t  In an e f f o r t t o take her a t t e n t i o n o f f of  h e r s e l f she r e t u r n e d t o s c h o o l , f i r s t  completing  business diploma, and e v e n t u a l l y a b a c h e l o r ' s environmental geography.  She  a  degree i n  c r e d i t s her a r t h r i t i s f o r  these accomplishments, s a y i n g t h a t i t "opened doors f o r [her] t h a t she never would have p e r c e i v e d . "  I t exposed  the shallowness of her former p u r s u i t s and f o r c e d her to  look f o r other p o s s i b i l i t i e s .  i l l n e s s as both b l e s s i n g and One  punishment.  of the p o s s i b i l i t i e s t h a t Tamara chose t o  pursue was  v o l u n t e e r work w i t h Cansurmount and  As a c h i l d Tamara's f a m i l y had off  So she sees her  the c o a s t of Newfoundland.  l i v e d on a s m a l l There was  hospice. island  no h o s p i t a l  t h e r e , l e t alone hospice, and when people were i l l and approaching death they came t o Tamara's mother f o r  90  care.  T h i s woman had a s t r o n g b e l i e f t h a t t h e body was  something q u i t e d i s t i n c t from t h e s p i r i t o r essence, and consequently had no f e a r o f death.  As people  approached p h y s i c a l death she encouraged them t o l e t go of  t h e i r s t r u g g l e s and go towards t h e l i g h t .  to  instill  She t r i e d  the same a t t i t u d e s about death i n her  c h i l d r e n , though Tamara says she d i d not f u l l y understand u n t i l much l a t e r i n l i f e , when she l e a r n e d about Eckankar, and when she had her own near-death experiences. The f i r s t near-death e x p e r i e n c e o c c u r r e d f i v e years ago when Tamara was having hip-replacement surgery.  She d e s c r i b e s i t t h i s way:  The d o c t o r l e f t me p a r a l y z e d . He f o r g o t t o r e l e a s e the drug I had. As a r e s u l t of t h a t I was c l i n i c a l l y dead f o r about twenty minutes. I had a c h o i c e t o come back o r s t a y where I was, because where you a r e i s v e r y , v e r y , b e a u t i f u l . You see the l i g h t and hear t h e sound. I t ' s beyond anything comprehensible t o t h i s world. I d i d n o t want t o come back but I r e a l i z e d I had s m a l l c h i l d r e n and I took these on, and maybe I s h o u l d continue w i t h them. So t h e s p i r i t u a l b e i n g s a i d t h a t was c o r r e c t . I t ' s l i k e a t e s t you're g i v e n . Her second near-death e x p e r i e n c e o c c u r r e d l a s t year and was more immediately r e l e v a n t t o her a r t h r i t i s .  She  had an i d i o s y n c r a t i c r e a c t i o n t o a l a r g e dose o f prednisone; her h e a r t e n l a r g e d , she says, pushing on  her lungs and esophagus and p r e v e n t i n g her from breathing. That was d i f f e r e n t . The c h i l d r e n were r a i s e d now and I had a c h o i c e and I r e a l l y wanted t o s t a y on the o t h e r s i d e . I s a i d t o the s p i r i t u a l b e i n g " i f I d i e now would I have t o come back and f i n i s h t h e karma I have now?" and I was t o l d y e s . So I thought what t h e heck. I'm f i f t y - t w o years o l d now. What t h e h e l l . I ' l l come back. The u n i v e r s e , a c c o r d i n g t o Tamara's b e l i e f s , such t h a t i n one's present l i f e  operates  one has t o pay  r e t r i b u t i o n f o r p a s t wrongs and experience a change i n c o n s c i o u s n e s s ; otherwise one i s doomed t o experience the same h a r d s h i p i n the next l i f e . for  When people  pray  Tamara's h e a l i n g she e r e c t s a " s h i e l d o f l i g h t . "  She does not want t o be denied t h e experience o f her a r t h r i t i s , l e s t she be f o r c e d t o r e l i v e t h e experience all  over again i n the next l i f e .  Besides, she was  shown i n a r e v e l a t i o n t h a t although she would have t o experience many years o f s u f f e r i n g i n t h i s l i f e , the s u f f e r i n g would end i n t h e next few y e a r s , l e a v i n g her without p a i n and d i s a b i l i t y f o r the remainder o f t h i s life. In stills  e x p l a i n i n g the e t i o l o g y o f her a r t h r i t i s  Tamara  says "A, B, C, and D, E, F must come t o g e t h e r  before i t i s a c t i v a t e d . "  I f one s t a r t s w i t h a g e n e t i c  92  predisposition,  and meets w i t h the r i g h t  environmental  conditions,  say, c o l d c l i m a t e , s t r e s s , hormonal  deficiency,  and a h i s t o r y of a t h l e t i c i n j u r i e s ,  symptoms w i l l Now,  appear.  however, having l i v e d w i t h her a r t h r i t i s f o r  15 y e a r s , the s p i r i t u a l e x p l a n a t i o n i s most s a l i e n t f o r her.  Paying r e s t i t u t i o n f o r past wrongs i s a l o g i c a l  and s a t i s f y i n g e x p l a n a t i o n f o r her s u f f e r i n g . her involvement  i n Eckankar has p r o v i d e d her w i t h a  sense of purpose; she p u b l i s h e s a  nationally  d i s t r i b u t e d n e w s l e t t e r f o r Eckankar, and she conducts workshops on s u b j e c t s r e l a t e d t o experiences, f e a r s , also writing  Further,  regularly  near-death  s t r e s s , and v i s u a l i z a t i o n .  She i s  a book on coping w i t h i l l n e s s , and d e a l i n g  with doctors. She  f e e l s a t peace knowing her a r t h r i t i s i s p a r t  of the n a t u r a l  order.  I f I had not g o t t e n s i c k , I would not have been sent t o Montreal. I would not have met the nurse t h a t gave me Edgar Cayce's book, and a f t e r h i s book t h e r e was something m i s s i n g i n i t , and then I searched and I found. I became a d i f f e r e n t person. I am not the same person I was 15 years ago. I'm very p o s i t i v e , seldom n e g a t i v e . I look a t t h i n g s now and f i g u r e the karma has been f i n i s h e d , and now I'm j u s t s o r t of going t o a purification. And each stage i s an expansion o f consciousness and a s p i r i t u a l growth. E v e n t u a l l y  93 I w i l l be f i n i s h e d w i t h t h i s and w i l l l e a r n i n a new way. Gwen In 1980, Gwen was p a i n t i n g her f a m i l y ' s home, p r e p a r i n g i t f o r s a l e a f t e r t h e bank's f o r e c l o s u r e ; so she began h e r s t o r y .  She n o t i c e d t h a t h e r t o e s were  v e r y sore but decided t h a t t h e p a i n must have been caused by her having t o s t r e t c h on t i p t o e t o reach h i g h places with her paintbrush. Over t h e next s i x months o r s o , other  joints  became i n v o l v e d as w e l l : f i r s t her hands, then her knees.  She went t o see her f a m i l y d o c t o r who then  r e f e r r e d her t o a r h e u m a t o l o g i s t . rheumatoid  Diagnosis of  a r t h r i t i s was prompt, and i t was suggested  t h a t she be admitted  immediately  t o G.F. Strong o r t o  Rufus Gibbs, a lodge which houses people  seriously-ill  w i t h a r t h r i t i s while they a t t e n d i n t e n s i v e , treatment a t t h e A r t h r i t i s Centre. p l e t h o r a o f excuses centres.  full-time  Gwen o f f e r e d a  f o r not going t o e i t h e r o f t h e two  " I ' d use a n y t h i n g , " she says.  two dogs', you know.  "*0h, I've g o t  J u s t t o t h i n k r e a l l y my a r t h r i t i s  i s so bad t h a t I've g o t t o do something about i t . "  She  managed i n t h i s way t o a v o i d h o s p i t a l i z a t i o n f o r t h e next f o u r y e a r s .  94 In t h e e a r l y days o f h e r a r t h r i t i s , Gwen r u l e d out h e r e d i t y as a p o s s i b l e cause o f her a r t h r i t i s as she c o u l d t h i n k o f no o t h e r f a m i l y member with s i m i l a r symptoms.  Instead she p o i n t e d t o menopause as t h e  t r i g g e r t h a t s e t o f f her a r t h r i t i s :  " I would have been  l a t e 40s, r e a l l y , and maybe I wonder sometimes i f t h a t age has something t o do w i t h t h e change, t o o , you know. Why would a r t h r i t i s come a t t h a t p a r t i c u l a r age?" However another e x p l a n a t i o n , s t r e s s , came t o t h e f o r e as s l o w l y Gwen began t o come terms w i t h t h e events t h a t had o c c u r r e d over s e v e r a l years p r e c e d i n g t h e onset o f her a r t h r i t i s .  She had had a v e r y t r a d i t i o n a l  marriage; h e r husband was a prominent businessman and the s o l e breadwinner f o r t h e f a m i l y , and Gwen's r o l e was t o c a r e f o r t h e home and t h r e e c h i l d r e n , and t o p l a y t h e s u p p o r t i n g r o l e t o h e r husband, e n t e r t a i n i n g h i s c o l l e a g u e s and customers.  They l i v e d i n q u i t e a  grand s t y l e i n a " s e l e c t " neighbourhood, and t h e i r c h i l d r e n o n l y attended expensive p r i v a t e s c h o o l s . But a l l was n o t as i t seemed; Gwen's husband mortgaged t h e i r house t o prop up h i s f a i l i n g  business  and was behaving  i n ways she now c a l l s  "scandalous."  He had developed  a very s e r i o u s d r i n k i n g problem and  95  had become extremely  "promiscuous."  Gwen t r i e d a l l t h e  while t o remain t h e s t a b l e , g e n t e e l w i f e , t u r n i n g a b l i n d eye t o much o f what was happening and d r a p i n g t h e f a m i l y ' s l i f e with a v e i l o f  civility:  I was always t h e r e t o be dependable. I would never have been a b l e t o depend on him r e a l l y . Oh, the u n c e r t a i n t y o f i t a l l , you know, w a i t i n g . I'd have cheese s o u f f l e , you know, f o r d i n n e r . He was t a k i n g courses a t [a u n i v e r s i t y ] and he'd say, w e l l , you know, "wait t o e a t . " He'd be home a t 11 o ' c l o c k a f t e r t a k i n g t h i s course, so " l e t ' s have a s o u f f l e , you know, w e ' l l have a l a t e d i n n e r . " And I'd make t h e s o u f f l e but you know what happens i f you don't e a t i t . You know 11 o ' c l o c k would go, maybe one day, two days, t h r e e days. J u s t an i m p o s s i b l e way t o l i v e . Yet Gwen's husband belonged t o a s o r t o f " c u l t u r e " where t h i s k i n d o f behaviour  was t h e norm.  I n c r e a s i n g l y , Gwen r e s e n t e d t h e "phoniness"  of t h i s  c u l t u r e , and began t o q u e s t i o n h e r r o l e i n s u p p o r t i n g it.  " I t was such a phony k i n d o f l i f e , you know, t h e  f r i e n d s t h a t I had t o e n t e r t a i n . . . I don't a p p r e c i a t e people who r e a l l y abuse t h e i r f a m i l i e s and don't t r e a t them v e r y n i c e l y , and t o have t o e n t e r t a i n these people, you know, t h e r e was a l o t o f phoniness, t o o . " Gwen's husband's v o l a t i l e behaviour  had a profound  e f f e c t on t h e c h i l d r e n as w e l l : I was so o b l i v i o u s , you know, t o them being so h u r t , but ah. Oh, i t takes a tremendous t o l l , you know. I mean now when you hear o f d y s f u n c t i o n a l  96 f a m i l i e s , I mean my goodness here we were, my c h i l d r e n going t o p r i v a t e s c h o o l , I mean what a phony facade i t was, r e a l l y , and, you know, k i n d of a w a l l . . . [meanwhile a t home] c h i l d r e n never knowing what's going t o happen when they come i n through t h e door. I t ' s a t e r r i b l e way f o r c h i l d r e n t o l i v e . . . I f e l t t e r r i b l y g u i l t y about it. C h i l d r e n a r e very f o r g i v i n g and they say " w e l l , you know, what c o u l d you have done about it?" I mean we were l i k e h e l p l e s s b a b i e s . . . we were such a p a t h e t i c bunch, you know, t o t h i n k t h a t r e a l l y i n a way t h i s man was t h e engine, you know, t h a t had k i n d o f d r i v e n us t o where we were. And without him t h e r e was t o t a l c o l l a p s e . In 1975 Gwen i n i t i a t e d d i v o r c e  proceedings,  determined t o seek peace and s t a b i l i t y f o r h e r s e l f and her c h i l d r e n .  But h e r r e s o l v e crumbled beneath t h e  weight o f h e r husband's charm; on New Year's Day, 1976, a day which h e l d g r e a t emotional s i g n i f i c a n c e f o r h e r because o f i t s a s s o c i a t i o n with endings and beginnings, he made a s u r p r i s e appearance a t h e r house.  " I was so  exhausted and I remember him coming t o t h e k i t c h e n , you know, and he j u s t hugged me and gave me a k i s s and would you b e l i e v e t h a t was t h e s t a r t o f t h e r e c o n c i l i a t i o n , you know, but r e c o n c i l i n g t o t h e same p a t t e r n s , even worse than  before."  Her husband's d r i n k i n g , l y i n g , and i n f i d e l i t y continued  despite the r e c o n c i l i a t i o n .  A t one p o i n t he  went t o S e a t t l e t o admit h i m s e l f t o an a l c o h o l treatment c e n t r e , but not o n l y d i d t h i s f a i l t o s o l v e  97 h i s d r i n k i n g problems,  he met a woman t h e r e with whom  he began a long-term a f f a i r .  Many subsequent  trips  were made t o S e a t t l e on t h e pretence of checking i n t o the YMCA t o " f i g u r e t h i n g s out."  Though Gwen became  aware o f t h i s o t h e r woman, she was r e c e i v i n g mixed messages from h e r husband, and b e l i e v e d t h a t he would not leave h e r t o be w i t h t h e o t h e r woman.  She says, " I  j u s t thought I'd be married f o r e v e r . " Gwen's l i f e c o n t i n u e d i n t h i s manner f o r t h e next f o u r years o r so, and she was e v e r - h o p e f u l t h a t t h i n g s would improve.  " I thought i f he stopped d r i n k i n g  e v e r y t h i n g would be a l r i g h t .  And he d i d e v e n t u a l l y ,  and when he d i d he l e f t me."  In 1980 Gwen's marriage  broke down, h e r husband's b u s i n e s s f a i l e d , and t h e bank took her f a m i l y home: To l o s e your home i s such a waste i n a way. I t ' s q u i t e scandalous t o l o s e i t i n such a manner. You know, i t meant t h a t he had no v a l u e on home, c h i l d r e n , marriage, o r f a m i l y . I t meant n o t h i n g t o him and f o r me those were, you know, what e l s e i s t h e r e i n l i f e — f a m i l y , a r o o f over your head. So, you know, by nature I t h i n k I'm a calm person, but I must say t h a t I remember f e e l i n g such f e a r . At t h i s p o i n t , t o o , h e r c h i l d r e n were r e a c h i n g adulthood and were l e a v i n g home.  So i t seemed t o Gwen  t h a t t h e o n l y t h i n g she l i v e d f o r , h e r f a m i l y , had disintegrated.  I t was a t t h i s time, as she s a i d a t t h e  98  beginning  o f her s t o r y , t h a t she developed t h e symptoms  of a r t h r i t i s .  But i t was not u n t i l some time had  passed t h a t she began t o i n c o r p o r a t e s t r e s s i n t o her explanatory  model.  Looking  back she says:  I knew t h a t tremendous t h i n g s were happening t o my body. I mean t h e day I r e a l i z e d we owed t h e bank money, l o t s , you know — $40,000 — and t h a t ' s when t h e bank s a i d i t would send a t r u c k . You know t a k i n g your beds and e v e r y t h i n g . I just paced l i k e a madwoman. I mean something has t o happen t o your body, you know, e i t h e r t h e h e a r t g i v e s out o r you have h i g h blood p r e s s u r e . I t h i n k i f you have s t r e s s where you r e a l l y haven't a way o f r e s o l v i n g i t o r doing something about i t y o u r s e l f , w e l l I t h i n k i t has t o do something t o your body, t r i g g e r something. So began a very d i f f i c u l t new p e r i o d .  Suddenly she had  no home, no s a v i n g s , and no marketable s k i l l s which t o generate an income.  Complicating  with  matters was  the f a c t t h a t she d i d not have t r u e c l o s u r e on h e r marriage; her husband was s t i l l  i n and out o f her l i f e  " l i k e a wayward c h i l d . " Gwen d e s c r i b e s t h e development o f h e r a r t h r i t i s as g r a d u a l and i n s i d i o u s , b u t probing r e v e a l s t h a t i t s p h y s i c a l development was n o t g r a d u a l ; r a t h e r , h e r r e c o g n i t i o n o f i t s s e r i o u s n e s s and her w i l l i n g n e s s t o submit t o treatment were slow i n coming.  She i n s i s t e d ,  f o r t h e f i r s t few y e a r s , on b e i n g t h e s t o i c , t h e s t r o n g one on whom others c o u l d depend.  Preservation of t h i s  99 image of h e r s e l f was precluded  e s s e n t i a l t o her coping,  the acknowledgement t h a t her body  and was  degenerating. In 1985,  Gwen f i n a l l y ended her r e l a t i o n s h i p with  her husband once and f o r a l l .  In d i v o r c e  proceedings  she t r i e d t o argue t h a t the p h y s i c a l abuse she  had  s u f f e r e d from her husband had c o n t r i b u t e d t o the development of her a r t h r i t i s .  He had k i c k e d her many  times over the years i n the knees and  i n the r i b s ,  f a c t of which she i s very ashamed and which she virtually  no one,  and t o t h i s day,  o n l y person she knows who  tells  she says, she i s the  has a r t h r i t i s  Though her lawyer t o l d her t h a t "you good k i c k i n g and  a  i n the  ribs.  can't prove t h a t a  a good b e a t i n g cause a r t h r i t i s , "  she  continues t o b e l i e v e t h a t they were c o n t r i b u t i n g factors. As Gwen c l o s e d the book on her marriage, the reality  of her a r t h r i t i s h i t her face-on,  p h y s i c a l l y and  both  emotionally:  I woke up one morning, awake a l l n i g h t , my hands and arms were q u i t e s o r e . When I woke up I c o u l d n ' t move e i t h e r arm, you know, j u s t as i f you'd had a s t r o k e . And I remember my hands being p a l e , p a l e and waxy, j u s t s h i n y , you know, f r u i t - a r t i f i c i a l f r u i t i n a bowl, s h i n i n g l i k e t h a t . That's what my hands were l i k e . Oh I f e l t so i l l . That's what got me i n t o the [Rufus Gibbs] lodge  100  then, you know. That f r i g h t e n e d me because r e a l l y something happened t h a t I had no c o n t r o l [ o v e r ] . I t was a t t h i s p o i n t t h a t Gwen began t o q u e s t i o n me?"  "why  She says she had l i v e d i n a "dream world" most o f  her l i f e ,  and t h i s was t h e time t h a t t h e s t i n g o f  r e a l i t y was f e l t most a c u t e l y . back a t h e r l i f e  On one hand she looked  and a l l t h a t she had s u f f e r e d and  wondered why a f u r t h e r c r u e l t y had t o be i n f l i c t e d on her. all too.  But as time passed she saw t h a t she had s u r v i v e d t h a t had happened and t h a t she would s u r v i v e  this  Indeed, though she does not c o n s i d e r h e r s e l f a  r e l i g i o u s person, she had always had a vague sense t h a t "someone was watching over [ h e r ] , " and she came t o b e l i e v e t h a t "someone" would see h e r through h e r a r t h r i t i s as w e l l . In t h e years s i n c e t h i s d i f f i c u l t p e r i o d , Gwen has gone through s e v e r a l exacerbations  of her a r t h r i t i s ,  s e v e r a l s u r g e r i e s , and s e v e r a l h o s p i t a l i z a t i o n s . Though she has seen improvements through p h y s i o t h e r a p y , these improvements have o n l y been s h o r t - l i v e d .  She has  come t o b e l i e v e t h a t " f o r some kinds o f a r t h r i t i s nothing  works."  Nevertheless,  Gwen says u n e q u i v o c a l l y  the b e s t time o f h e r l i f e .  that t h i s i s  Hers i s a s t o r y o f paradox:  101 o n l y now  t h a t she has been s t r i p p e d of a l l t h a t  l i v e d f o r , o n l y now  t h a t she has  t o get i n t o a d r e s s , " o n l y now degenerative d i s e a s e has  a contortionist  t h a t she  faces a  f o r which l i t t l e seems t o work,  she been able t o f i n d peace.  "so sweet," "so calm," and can:  t o "be  she  she  She  says her  f i n d s pleasure  life is where  i n a book, i n the b i r d s a t her window, and  she  "in a  good cup of c o f f e e . " Madeleine In 1985,  when Madeleine was  developed sudden and index f i n g e r s .  She  35 years o l d ,  severe s w e l l i n g i n both of had  her  been camping r e c e n t l y , and  f i r s t thought t h a t the s w e l l i n g was t h a t had  she  due  t o something  happened on the camping t r i p ; perhaps she  banged her f i n g e r s or had  at  had  been b i t t e n by mosquitoes.  But the s w e l l i n g p e r s i s t e d beyond what Madeleine thought was  a reasonable p e r i o d of time, and  the advice of her  she  sought  doctor.  Madeleine's d i a g n o s i s of rheumatoid a r t h r i t i s very quick.  Soon she developed p a i n and  her knees and  f e e t as w e l l .  c o u l d h a r d l y walk," she says. I was  very  tired."  "I had  was  swelling i n  flare-ups l i k e I  " I t was  j u s t so p a i n f u l .  102 Madeleine s t a r t e d t o read e v e r y t h i n g she c o u l d g e t her hands on.  about RA t h a t  Much o f what she read  suggested t h a t RA i s a h e r e d i t a r y d i s e a s e ,  and l o o k i n g  at her own f a m i l y ' s medical h i s t o r y she had l i t t l e trouble believing t h i s .  "My mother had a r t h r i t i s ,  i n h e r 40s. And l i k e on h e r s i d e o f t h e f a m i l y  like  there  were 13 o f them, and both men and women, j u s t about a l l of them had [rheumatoid] a r t h r i t i s . " Madeleine spoke t o me i n b r i s k tones as she d e s c r i b e d how she t r i e d t o adopt an unemotional, practical  stance toward h e r a r t h r i t i s : "When I g o t  a r t h r i t i s I thought w e l l I've g o t a r t h r i t i s , my mother x  l i v e d w i t h i t , now I ' l l have t o t r y t o do my b e s t ' . still  f e e l t h a t way.  I can't  I  say t h a t I deny having  a r t h r i t i s , but I don't accept i t e i t h e r . " Madeleine i s annoyed by t h e way t h a t  arthritis  i n t e r f e r e s w i t h normal i n t e r p e r s o n a l i n t e r a c t i o n s : " I resent the fact  t h a t some people before  they say H i , x  how a r e you?', they say *how i s your a r t h r i t i s ? ' . it's like  * arthritis?  arthritis'.  What a r t h r i t i s ?  And  I don't have  And I t r y t o change t h e s u b j e c t . "  She  once attended an a r t h r i t i s support group meeting, and though she found i t very  informative,  she f e l t  103  a l i e n a t e d from t h e group because of her r e l a t i v e and d i d not r e t u r n . around  youth,  B e s i d e s , she i s not one t o s i t  and complain.  Madeleine c a l l s h e r approach "stubborn."  t o medical  treatment  Though she has t r i e d many medications she  i s convinced t h a t o n l y one works, and t h a t i n any case the s i d e e f f e c t s o f drugs a r e not worth t h e i r she does not want t o add something t o h e r l i s t o f medical a i l m e n t s .  benefits;  like a liver  problem  She has f r u s t r a t e d  her d o c t o r by d i s c o n t i n u i n g new medications a f t e r t h r e e or f o u r months when she doesn't see impressive r e s u l t s . "Most o f t h e time I was going without drugs," she says. "Then when i t would g e t r e a l l y , r e a l l y bad I went t o see my d o c t o r and then he'd say y o u j u s t don't s t a y on v  the drugs long enough so we don't know'.  But then I'd  say *well by t h r e e months I should be a b l e t o f e e l b e t t e r o r whatever'."  L a t e l y , though, she has begun t o  accept h e r d o c t o r ' s argument t h a t although t h e drugs w i l l not a r r e s t t h e a r t h r i t i s , they w i l l a t l e a s t i t s progress.  "I'm not sure I b e l i e v e t h a t b u t t h a t ' s  what they say. used t o be.  slow  So I guess I'm not as stubborn as I  I j u s t f i n a l l y gave i n . "  104 Madeleine spent most of her time d u r i n g our i n t e r v i e w s d e s c r i b i n g her r e l a t i o n s h i p with her a r t h r i t i s , t a l k i n g i n a very strong, dispassionate manner.  But a c e r t a i n q u e s t i o n p r o f o u n d l y changed the  tone o f our i n t e r v i e w ; I asked "what was happening i n your l i f e  around the time your a r t h r i t i s  started?"  Madeleine's e x p r e s s i o n changed completely; she looked as though she had been h i t i n the head w i t h a b r i c k . She t u r n e d the tape r e c o r d e r o f f and her t r e m b l i n g l i p soon gave way c o u l d not "I  t o f u l l - b l o w n sobs.  For a l o n g w h i l e she  speak.  had a handicapped daughter," she f i n a l l y  "She d i e d t h r e e y e a r s ago when she was was of  14."  said.  When she  a b l e t o c o l l e c t h e r s e l f Madeleine t o l d me the s t o r y her daughter's i l l n e s s , a s t o r y she seldom  because the h u r t i s s t i l l seemingly normal baby.  so deep.  tells  Inga was born a  She s t a r t e d t o walk a  little  l a t e a t 15 months, but her d o c t o r was unconcerned. the  time she was two y e a r s o l d , however, her  n e u r o l o g i c a l symptoms were pronounced was  By  enough t h a t she  diagnosed as having c e r e b r a l p a l s y . Madeleine was d i s s a t i s f i e d w i t h her daughter's  d i a g n o s i s as i t d i d not seem t o f i t w i t h what she read  105 about c e r e b r a l p a l s y o r w i t h what the p h y s i o t h e r a p i s t s were s a y i n g .  F u r t h e r , whatever  c o n d i t i o n i t r e a l l y was  seemed t o be p r o g r e s s i v e i n n a t u r e .  Still,  no f u r t h e r  medical i n v e s t i g a t i o n s were undertaken, probably because of the l i m i t e d medical r e s o u r c e s i n the s m a l l n o r t h e r n town where Madeleine's f a m i l y  lives.  By t h e time she was 8 y e a r s o l d , Inga was walking w i t h t h e use of a walker, but she had much d i f f i c u l t y doing so because her l e g s were " s c i s s o r i n g " ; t h a t i s , the spasms i n her adductor muscles t h a t p u l l t h e l e g i n a t the h i p were so s t r o n g t h a t they were a c t u a l l y c a u s i n g her l e g s t o c r o s s over each o t h e r i n v o l u n t a r i l y as she t r i e d t o walk. H o s p i t a l i n Vancouver  She was sent t o C h i l d r e n ' s f o r s u r g e r y t o address t h i s  problem, but s p e c i a l i s t s here t r i e d i n s t e a d t o diagnose Inga's t r u e  problem.  In a d d i t i o n t o t h e symptoms t h a t resemble those o f c e r e b r a l p a l s y , Inga had o t h e r s t h a t had gone unexplained, such as " g r a y i n g " around her eyes.  The  d o c t o r s f i n a l l y diagnosed her w i t h Cockayne's Disease, a c o n d i t i o n so r a r e t h a t o n l y 19 people i n North America have i t .  The p r o g n o s i s f o r Inga was poor:  continued degeneration and death a t an e a r l y age.  106 I t was around t h e time o f Inga's d i a g n o s i s w i t h Cockayne's Disease t h a t Madeleine f i r s t developed t h e symptoms o f a r t h r i t i s . her  A t t h e time Madeleine devoted  e n e r g i e s t o Inga's c a r e and d i d not s t o p t o wonder  about t h e e f f e c t t h a t h e r s t r e s s had on h e r a r t h r i t i s . Inga's degeneration was r a p i d .  W i t h i n a year she  had l o s t h e r s i g h t and was wearing a h e a r i n g a i d . "Her muscles d e t e r i o r a t e d t o t h e p o i n t t h a t she was f o l d e d i n h a l f l i k e an a c c o r d i o n . . . she went from b e i n g a b l e to walk w i t h a walker and b e i n g a b l e t o e a t by h e r s e l f and doing a l l those t h i n g s t o b a s i c a l l y doing n o t h i n g . " At  n i g h t Inga's c o n d i t i o n r e q u i r e d Madeleine t o be up  every 15 minutes o r so, about 20 times per n i g h t .  The  r e s p o n s i b i l i t y f o r Inga's p h y s i c a l c a r e r e s t e d s q u a r e l y on Madeleine's s h o u l d e r s , d e s p i t e Madeleine's own p h y s i c a l problems. see h e r l i k e  "Plus t h e worrying, I mean, j u s t t o  that."  Now t h a t Inga has passed away, Madeleine's a t t e n t i o n has f i n a l l y been a b l e t o s e t t l e on h e r s e l f , and she has s t a r t e d t o c o n s i d e r t h e r o l e s t r e s s might have p l a y e d i n t h e onset o f h e r a r t h r i t i s .  "I've heard  so many people who say t h a t they had a p a r t o f t h e i r  107 l i f e where they had  so much s t r e s s , " she says.  t h i n k t h a t p e r s o n a l l y t h a t ' s what t r i g g e r e d Now  t h a t Madeleine i s i n her 40s  "I  it."  and has RA,  she  i s becoming more and more f r i g h t e n e d as she r e f l e c t s her mother's experience a t the same age. mother never complained and a r t h r i t i s , the d i s e a s e was moved, i n the way  she had  her most c h e r i s h e d back of when my  t o c u t back on her  was  i n her 40s,  look a t myself i n the m i r r o r . . . look a l i k e , but now f a c e , and Now  i t was  i n the way  a c t i v i t y , a t times.  mom  Though her  seldom even spoke of evident  and  her  she sewing,  "I can  think  sometimes I  i t ' s not t h a t we  I know t h a t t h e r e was  the p a i n of  just  p a i n on  face.  her  arthritis."  t h a t Inga i s gone, Madeleine i s a b l e t o  the p a i n on her own  on  She  f e e l s angry, and  see rails  a t the i n j u s t i c e s t h a t were done t o her daughter t h a t are been done t o her now.  and  Asked i f anything  good  has come of her a r t h r i t i s she  shoots back a h o r r i f i e d ,  emphatic "no!".  "why  her mind, and "Why  The  she has  question  looms l a r g e i n  no answer f o r i t .  [some] people s u f f e r more than o t h e r s  have] no i d e a , " Madeleine says. She  me?"  " I t just isn't  [I fair."  searches i n her mind f o r l i f e - e v e n t s t h a t might be  108 a s s o c i a t e d with subsequent m i s f o r t u n e , and comes up empty.  Nothing  she has done i n her l i f e  l o g i c a l l y t o where she i s now,  f o r she had always t r i e d  t o l i v e a good l i f e , a h e a l t h y l i f e . j o k i n g l y she says, "In another  leads  life  Only  half-  I ' l l be a drunk and  a prostitute." Stacey I first  saw  Stacey when I was  waiting to talk to  the charge nurse on the a r t h r i t i s ward, w a i t i n g f o r a s u g g e s t i o n as t o a who p a r t i c i p a t i n g i n my  might be i n t e r e s t e d i n  study.  The young c h i l d of one  of  the a r t h r i t i s p a t i e n t s had been i n j u r e d s l i g h t l y when her f a t h e r ' s e l e c t r i c wheelchair went a s t r a y , and Stacey was  immediately  on the scene t e n d i n g t o the  wound and o f f e r i n g a d v i c e about f a c i l i t a t i n g i t s healing.  She seemed v e r y p r o f e s s i o n a l and  knowledgeable, but she was  dressed i n a long gown, and  although the d r e s s code f o r nurses a t Pearson i s v e r y r e l a x e d , I d i d not t h i n k t h a t she c o u l d have been of the s t a f f . her on her way, rooms.  She bandaged up the l i t t l e g i r l  and  one sent  then went i n t o one of the p a t i e n t  When the ward nurse r e t u r n e d t o the desk and I  109 asked her t o i n t r o d u c e me  t o someone who  w i l l i n g t o be i n t e r v i e w e d , I was F o r t y - f o u r - y e a r - o l d Stacey symptoms of a r t h r i t i s i n 1986. p a i n i n her back and  might be  introduced to  Stacey.  f i r s t developed  the  At f i r s t she o n l y  i n her s a c r o i l i a c s , the  between the spine and the p e l v i s .  had  joints  She had been working  as a nurse i n the emergency department of a l a r g e Toronto  h o s p i t a l and a t f i r s t a t t r i b u t e d her p a i n t o  the v e r y p h y s i c a l nature of her job.  But when the p a i n  p e r s i s t e d she began t o look t o other e x p l a n a t i o n s . h o s p i t a l where she worked had a l a r g e t r o p i c a l  The  diseases  u n i t and her muscle aches were not i n c o n s i s t e n t with a v i r a l i n f e c t i o n ; she began t o wonder whether she p i c k e d up some unusual Simultaneously,  had  v i r u s i n the course of her work.  she began t o wonder whether the  h e p a t i t i s B v a c c i n e t h a t she had been r e q u i r e d t o take might have produced her symptoms. Diagnosis of Stacey's  a r t h r i t i s took about a year.  In t h a t time s e v e r a l p o s s i b i l i t i e s had been i n v e s t i g a t e d i n c l u d i n g p o l y m y o s i t i s , lupus,  and  lymphoma.  was  Although  her p a t t e r n of symptoms  somewhat a t y p i c a l because i t i n c l u d e d , by t h i s inflammation  of the s h o u l d e r s , knees, and  time,  fingers,  110 Stacey was  diagnosed w i t h P s o r i a t i c A r t h r i t i s  T h i s c o n d i t i o n i s v e r y s i m i l a r t o RA  (PA).  i n that i t i s a  systemic, inflammatory form of a r t h r i t i s , but people who  have i t have a s k i n c o n d i t i o n  ( p s o r i a s i s ) as w e l l ,  and t y p i c a l l y have a d i f f e r e n t p a t t e r n of involvement than people w i t h  joint  RA.  Stacey's p h y s i c a l t o l e r a n c e f o r the heavy work and the 12-hour s h i f t s t h a t her job r e q u i r e d was reduced as her a r t h r i t i s worsened. was  markedly  Her p e r s o n a l  life  s t r a i n e d as w e l l because her s i c k f a t h e r , whose  care had been her r e s p o n s i b i l i t y , had d i e d unexpectedly w i t h i n months of the onset of her a r t h r i t i s . next t h r e e years she was  For the  o n l y a b l e t o work on and o f f  as she t r i e d t o cope w i t h her i l l n e s s and w i t h the l o s s of  her f a t h e r . Away from work, Stacey f e l t s t r i p p e d of her  identity.  From the time she was  a little  girl  she  had  devoted h e r s e l f t o l e a r n i n g as much as she c o u l d about n u r s i n g , v o r a c i o u s l y r e a d i n g her aunt's medical t e x t s i n s t e a d of doing t h i n g s t h a t were t y p i c a l f o r g i r l s of her age.  When she became an a d u l t , her n u r s i n g c a r e e r  was more important than a n y t h i n g e l s e i n her  life:  The one t h i n g I d i d r e a l l y w e l l was n u r s i n g . I mean I'm not married, I don't have any c h i l d r e n .  Ill Nursing was my l i f e . And so t h a t was the t h i n g t h a t - i f I'd get up i n the morning and I wasn't having a good day, I c o u l d say t h a t I ' l l be working i n emergency tomorrow and I ' l l s h i n e there. Stacey's f o r c e d withdrawal from work t h r u s t her i n t o deep d e p r e s s i o n . her,  The q u e s t i o n "why  and she looked everywhere  me?"  f o r answers.  tormented She says  t h a t she i s C h r i s t i a n , and f o r a long w h i l e thought t h a t God must be p u n i s h i n g her f o r something.  One  day  a f r i e n d s a i d t o her "you know you're smart and you r e a l l y love n u r s i n g .  You must have been r e a l l y bad i n  your l a s t l i f e because you're g e t t i n g so b a d l y punished [now];" t h i s comment s t a r t e d Stacey wondering i f t h e r e might be something t o t h i s At  idea.  one p o i n t Stacey became i n v o l v e d w i t h the  Church of Jesus C h r i s t , a f a c t t h a t she i s now to  loathe  admit because i t i s i n d i c a t i v e of the d e s p e r a t i o n  w i t h which she searched f o r answers. persuaded her t o move out of her own  Church members apartment and  a communal house shared by o t h e r church members.  into There  they t r i e d t o r e c r u i t her as a nanny t o the e v a n g e l i s t ' s c h i l d r e n s a y i n g " t h i s i s what God wants you t o do."  The p r e s s u r e mounted u n t i l f i n a l l y  she  112 r e a l i z e d with a s t a r t t h a t she had succumbed t o a c u l t , and she q u i c k l y e x t r a c t e d h e r s e l f from i t s h o l d . Meanwhile Stacey's  a b i l i t y t o work continued t o  d e c l i n e u n t i l 1989 when she had t o q u i t a l t o g e t h e r . Over the t h r e e years t h a t she had t r i e d t o keep her job i n the emergency department, support  from her n u r s i n g  peers and s u p e r v i s o r s had d e t e r i o r a t e d c o n s i d e r a b l y . "Nursing  doesn't take c a r e o f n u r s i n g , " she says.  " I t ' s not l i k e other p r o f e s s i o n s where t h e y ' l l s o r t o f crowd around and t r y and h e l p you out. that i n nursing."  I t ' s not l i k e  When she f i n a l l y r e s i g n e d , she  r e c e i v e d a very c r i t i c a l  l e t t e r from her s u p e r v i s o r  t h a t was t o have a d e v a s t a t i n g a f f e c t on her a b i l i t y t o secure  f u t u r e employment.  Many o f Stacey's illness.  f r i e n d s a l s o abandoned h e r i n h e r  "Suddenly you're not Stacey  Stacey with an i l l n e s s . "  anymore.  You're  She even began t o q u e s t i o n  the b a s i s o f t h e i r f r i e n d s h i p s w i t h her, and wondered whether they o n l y wanted t o be f r i e n d s so long as she was a b l e t o g i v e t o them.  " 0 h gee, you know, she used A  t o look a f t e r us when we had our c h i l d r e n and when we were s i c k ' , " she imagines them s a y i n g .  Stacey moved t o Vancouver i n 1989. Her s i s t e r l i v e s here, but she t u r n e d out t o be l i t t l e h e l p o r support.  P a r t l y , Stacey f i g u r e s , t h i s i s because o f  the r e l a t i v e i n v i s i b i l i t y o f h e r d i s e a s e . came t o r e a l i z e t h a t her s i s t e r was s t i l l  But she a l s o grieving  t h e i r f a t h e r ' s l o s s , and was n o t e m o t i o n a l l y prepared t o a l l o w t h a t another l o v e d one c o u l d be s e r i o u s l y  ill.  In Vancouver, Stacey took a j o b as a v e n i p u n c t u r i s t w i t h t h e Red C r o s s , b e l i e v i n g t h a t t h e work's p h y s i c a l demands would n o t exceed h e r a b i l i t i e s . When she was h i r e d she made i t c l e a r t o her s u p e r v i s o r t h a t she was seeking t h i s work because h e r a r t h r i t i s p r e c l u d e d f u r t h e r work as an emergency room nurse. However, she soon d i s c o v e r e d t h a t one o f h e r d u t i e s was t o unload medical s u p p l i e s from t r u c k s , a t a s k w e l l beyond h e r a b i l i t i e s .  F r u s t r a t e d , but anxious t o work,  she d i d her b e s t t o perform as r e q u i r e d , but had t o q u i t a couple o f months l a t e r .  Her s u p e r v i s o r "made  [her] sound l i k e t h e worst nurse i n t h e whole world and how c o u l d [she] ever p o s s i b l y have made i t through so many years o f ICU and emergency."  She q u i t b e f o r e she  thought t o apply f o r long-term d i s a b i l i t y b e n e f i t s , and so began her descent i n t o p o v e r t y .  114 By  1993  Stacey's a r t h r i t i s had  p o i n t t h a t she was  admitted t o G.F.  of i n t e n s i v e treatment. she decided f i e l d once  Her  f o r work i n the  and  nursing  again. down Stacey's a p p l i c a t i o n s ,  she s t a r t e d t o get angry, b e l i e v i n g t h a t she  being d i s c r i m i n a t e d a g a i n s t because of her She  the  Strong f o r a p e r i o d  c o n d i t i o n improved,  to s t a r t applying  Three h o s p i t a l s turned and  progressed t o  l a i d complaints w i t h the B.C.  her.  She  decided  l e t t e r had  so badly  Council  declined to h i r e  f u r t h e r t o launch a l e g a l  a g a i n s t her s u p e r v i s o r  illness.  Human R i g h t s  a g a i n s t the t h r e e h o s p i t a l s t h a t had  was  i n Toronto whose  suit  "reference"  damaged her chances of f i n d i n g work  i n nursing.  "I f e e l very s t r o n g l y about what they've  done t o me,"  she says.  "I can't  j u s t s i t and take i t  because i t ' s l i k e acknowledging t h a t I am what they I am,  t h a t I'm  no good, t h a t I'm  got a r t h r i t i s and how  useless.  That  say  I've  c o u l d I p o s s i b l y be a good nurse  anymore." The  s t r e s s of f i g h t i n g her l e g a l b a t t l e s , of  t o the w e l f a r e  o f f i c e , of d e a l i n g e m o t i o n a l l y  with  trips the  l o s s of her beloved c a r e e r , began t o take i t s t o l l  on  Stacey.  her  She  began t o n o t i c e t h a t exacerbations  of  115 a r t h r i t i s tended t o occur i n times o f p a r t i c u l a r s t r e s s , and she began t o wonder about t h e r o l e o f s t r e s s i n b r i n g i n g on her a r t h r i t i s i n t h e f i r s t She  place.  had always thought t h a t she t h r i v e d on t h e h i g h  s t r e s s o f working i n an emergency room, but on r e f l e c t i o n she s t a r t e d t o t h i n k t h a t perhaps she was j u s t t o o busy t o n o t i c e i t s p h y s i c a l e f f e c t s : In emergency they're coming i n so f a s t and they're so a c u t e l y i l l t h a t you don't even have time t o t h i n k o f a l l t h e t h i n g s t h a t go on... l i k e you know you have t o go out and t a l k t o a f a m i l y and say your f a t h e r ' s j u s t d i e d . . . but, you know, f i v e minutes l a t e r you j u s t c l e a n up t h e room and you've got another trauma coming i n . But away from t h i s w h i r l w i n d pace she c o u l d f e e l t h e d i r e c t e f f e c t o f s t r e s s on h e r body.  Looking back,  too, she remembered t h e s t r e s s o f h e r f a t h e r ' s and death.  illness  She r e c a l l s t h a t t h e n i g h t b e f o r e he d i e d  she had taken h e r phone o f f t h e hook, not r e a l i z i n g t h a t death was so near; perhaps he had t r i e d t o reach her t o say something t o her, i s f i l l e d with g u i l t . has  she says,  and f o r t h a t she  In t h e p a s t few y e a r s ,  come t o b e l i e v e t h a t s t r e s s has played  Stacey  a p a r t both  i n t h e onset and t h e worsening o f h e r a r t h r i t i s . Stacey s t i l l depression,  e x p e r i e n c e s p e r i o d s o f profound  and has even c o n s i d e r e d  t a k i n g h e r own  116  life. in  Yet she a l s o experiences surges o f f i r m r e s o l v e  which she vows t o make something good o f her  illness.  During the dark times she s t i l l  struggles  with the q u e s t i o n "why me?", but i n the good times she t h i n k s she can see an answer: I wonder i f maybe I've g o t t e n t h i s because as a nurse I wasn't l o o k i n g a t [ s u f f e r i n g ] from inward. Now I can r e a l l y look a t i t . L i k e I was always very understanding o f people i n w h e e l c h a i r s , I thought — u n t i l I g o t i n t o one one day and I thought, My God, I had no i d e a i t was t h i s hard t o work these t h i n g s o r no i d e a i t would be t h i s f r i g h t e n i n g t o go i n a wheelchair a c r o s s t h e road... And I can t e a c h somebody e l s e t h a t . . . maybe [ t h a t ' s ] what I ' l l do my t h e s i s on. Stacey i s t r y i n g t o view her i l l n e s s as something t h a t w i l l make her a b e t t e r nurse, and as something t h a t w i l l nudge her i n t o promoting systemic change i n t h e p r a c t i c e o f n u r s i n g , change t h a t focuses on t h e " a r t " of  n u r s i n g r a t h e r than the " s c i e n c e " o f n u r s i n g . Stacey s t i l l w r e s t l e s w i t h the p h i l o s o p h i c a l  q u e s t i o n s surrounding her i l l n e s s , but a t t h e same time she continues t o look f o r medical c l u e s as t o i t s etiology.  R e c e n t l y she had an o p p o r t u n i t y t o review  her own medical c h a r t s , and t h e p o s s i b i l i t y t h a t t h e h e p a t i t i s B v a c c i n e t r i g g e r e d her a r t h r i t i s has come t o the f o r e f o r her once a g a i n .  117 As we  p a r t e d ways Stacey t o l d me  ever needed any medical  t o c a l l her  if I  information.  Caroline "In 1977,  the b e g i n n i n g , I went t o the d o c t o r  he n o t i c e d — I  noticed b e f o r e — t h a t  a d i f f e r e n t way,  my  going sideways."  s t o r y of her a r t h r i t i s .  tongue was  and  going  So began C a r o l i n e ' s  At the age  of 14,  n a t i v e g i r l l i v i n g i n a small northern  Caroline, a  community,  was  f o r c e d t o undergo p a i n f u l d i a g n o s t i c procedures, such as s p i n a l t a p s , as d o c t o r s  suspected t h a t she had  a  b r a i n tumour. Though C a r o l i n e ' s f a m i l y was C a r o l i n e was  unperturbed, and  p o t e n t i a l seriousness was  " l o s t on  f r a n t i c w i t h worry,  she says now  that  the  of what the d o c t o r s were s a y i n g  [ h e r ] , " young as she was.  She  had  heard  from other people t h a t s t r e s s c o u l d cause a r t h r i t i s , but hers was  not merely the s t r e s s of worry.  The  p h y s i c a l s t r e s s of these procedures, C a r o l i n e b e l i e v e s , was  also responsible  Though she had be p a i n f u l , she  f o r b r i n g i n g on her  arthritis.  been t o l d t h a t her s p i n a l tap would not found the procedure e x c r u c i a t i n g ,  perhaps, she says, because of the ineptness person performing i t .  of  the  118 C a r o l i n e says t h a t t h i s c a u s a l t h e o r y  was  somewhere i n her c o n s c i o u s n e s s when a d i s c u s s i o n w i t h a c e r t a i n nurse brought i t forward: She mentioned i t and i t r e a l l y got me t o t h i n k i n g because I heard o t h e r people t a l k i n g about something happened j u s t b e f o r e they found out they had a r t h r i t i s , something happened b e f o r e t h a t . L i k e a husband d i e d , something. I t g e t s you t o wonder, you know. I t can't be a c o i n c i d e n c e . T h i s theory has s i n c e been r e i n f o r c e d times by f e l l o w h o s p i t a l  several  patients:  I t seems t o me t h a t a few people have s a i d t h a t s t r e s s has brought i t on, t h e i r a r t h r i t i s . Like a lady here had chickenpox. R i g h t a f t e r she got chickenpox, she found out she had a r t h r i t i s . W i t h i n a few months of b e g i n n i n g the medical i n v e s t i g a t i o n s , C a r o l i n e f e l t as though she were "walking on peas," and she woke up every morning w i t h cramps i n her l e g s . i t was  D e s p i t e these a t y p i c a l c o m p l a i n t s ,  not l o n g b e f o r e d o c t o r s diagnosed  arthritis.  rheumatoid  The mystery of the crooked tongue has  never  been s o l v e d , though d o c t o r s t e l l her t o watch f o r headaches and o t h e r symptoms t h a t might suggest a b r a i n tumour. For  two y e a r s a f t e r her d i a g n o s i s , C a r o l i n e spent  a week or so every month i n the h o s p i t a l , t r y i n g t o calm her f r e q u e n t f l a r e u p s .  A t t e n d i n g s c h o o l was  119 d i f f i c u l t ; she c o u l d h a r d l y s t e p up onto the bus,  walking  was  understanding she  exhausting,  and her f r i e n d s ' l a c k of  made her f e e l i s o l a t e d .  " j u s t gave up"  down a h i l l  i l l n e s s where she was  me?".  She  She was  was  a t a p o i n t i n her  f e e l i n g l i k e a burden t o  o n l y c o n c l u s i o n t h a t she c o u l d come up  with then, and s t i l l  the o n l y answer she has,  she must have done something bad  i s that  i n a past l i f e .  whether she i s j o k i n g when she says t h i s she I'm  was  c o n s t a n t l y y e l l i n g a t her  b r o t h e r s and s i s t e r s , and  "no,  16,  f e e l i n g so much p a i n t h a t she  p r a y i n g t o reach the bottom.  The  a t age  p a r t i c u l a r day a t around t h i s  time when she s t a r t e d a s k i n g "why  everyone.  So,  and q u i t s c h o o l .  C a r o l i n e r e c a l l s one  walking  school  Asked  replies  serious."  The urge t o ask the q u e s t i o n eased somewhat when she met  the man  l i k e g i v i n g up, changed my  who  was  t o become her husband.  and then I met  life."  my  husband.  became  She became  pregnant, she says, because she had heard t h a t " i f you're pregnant... your a r t h r i t i s stops i n most people."  The  o p p o s i t e was  t r u e f o r her; she  felt  He's  At the age of 17 she married,  pregnant, and gave b i r t h t o a daughter.  "I  was  r e q u i r e d t o c u t back on her medication, her a r t h r i t i s , worsened, and she spent most o f her pregnancy i n hospital. C a r o l i n e had a s t r o n g support network from which t o draw when i t came time t o c a r e f o r her newborn. mother, s i s t e r ,  Her  mother-in-law, and husband r a l l i e d  around her, h e l p i n g not o n l y w i t h the c a r e o f the baby, but w i t h C a r o l i n e ' s r e t u r n t o s c h o o l as w e l l . C a r o l i n e managed t o complete grade 10, but her knees and h i p s were r a p i d l y worsening,  and she r e t u r n e d  from s c h o o l each day d r a i n e d and unable t o do anything else.  She f e l t , t o o , as though her daughter b a r e l y  knew her, because o f her p h y s i c a l absence d u r i n g t h e day and her p h y s i c a l and emotional withdrawal  while a t  home. When she was 21 C a r o l i n e made her f i r s t t r i p t o G.F. Strong.  Her knees were so badly d e t e r i o r a t e d by  t h i s time t h a t j o i n t replacement  surgery was  but she f e l t e m o t i o n a l l y unprepared.  suggested,  She met another  young woman with RA w h i l e i n h o s p i t a l , and u n t i l  then  she had not r e a l i z e d t h a t t h e r e were any o t h e r young people w i t h a r t h r i t i s .  She f e l t some comfort i n  knowing she was not t h e o n l y one.  She a l s o met  a r t h r i t i s p a t i e n t s who had r e l a t i v e s with RA; one woman i n p a r t i c u l a r had a mother and a s i s t e r who a l s o had RA.  Though she knew o f no a r t h r i t i s  i n h e r own f a m i l y ,  she s t a r t e d t o b e l i e v e t h a t a r t h r i t i s has a g e n e t i c origin. The  next 7 years were h e l l i s h  for Caroline.  Not  o n l y was her a r t h r i t i s p r o g r e s s i v e l y worsening, she was d e a l i n g w i t h deep d e p r e s s i o n  as w e l l .  She spent much  of her time i n bed, unable t o move, and found h e r s e l f c r y i n g a l l t h e time.  I t was d u r i n g t h i s time t h a t she  s t a r t e d t o pay a t t e n t i o n t o what made her a r t h r i t i s b e t t e r and what made i t worse.  Not s u r p r i s i n g l y , she  found t h a t overuse, " p h y s i c a l s t r e s s , " made her j o i n t s f l a r e up.  But she a l s o n o t i c e d t h a t c e r t a i n foods  strawberries  and bread, which she c o n s i d e r s  made h e r a r t h r i t i s worse.  Further,  like  "acidy,"  she s t a r t e d t o  c o n s i d e r hypotheses t h a t she had read about; f o r example, she read i n Reader's D i g e s t t h a t  arthritis  might be t r i g g e r e d by t h e amalgam used i n t o o t h fillings. A f t e r these 7 years C a r o l i n e f i n a l l y mustered up the courage t o r e t u r n t o Vancouver f o r replacement surgery.  Within  joint  a few months she had one  122 h i p and both knees r e p l a c e d .  Though these s u r g e r i e s  e v e n t u a l l y l e d t o some f u n c t i o n a l improvement, her progress was  slowed because she developed  an  infection  a f t e r having a r o o t c a n a l ; t h i s i n f e c t i o n , she says, caused a f l a r e - u p of her The  arthritis.  l a s t f i v e years have been f i l l e d  with  h o s p i t a l i z a t i o n s , w i t h s u r g e r i e s , and with the search f o r an e f f e c t i v e m e d i c a t i o n .  Caroline's doctor  recommended t h a t she t r y methatrexate, used i n cancer chemotherapy. becoming pregnant  a drug commonly  S t e r n warnings about not  accompany t h i s drug, and she was  told  t h a t she would have t o have her tubes t i e d i f she were t o take i t .  The t e r r i b l e d e c i s i o n has weighed h e a v i l y  on her the p a s t couple of y e a r s . d y i n g and l e a v i n g her daughter or s i s t e r .  She i s very a f r a i d of  alone, without a b r o t h e r  But more and more, the d e s i r e t o have  another c h i l d "seems l i k e an i m p o s s i b l e dream." For the most p a r t i t seems t h a t C a r o l i n e has adopted  a r a t h e r f a t a l i s t i c stance toward her  arthritis.  At one p o i n t she went f o r surgery on her  l e f t ankle because i t was  v e r y p a i n f u l , and g r a t i n g so  l o u d l y t h a t o t h e r people c o u l d hear i t .  In the  o p e r a t i n g room the a n e s t h e s i o l o g i s t commented t h a t her  123 c h a r t had " r i g h t ankle" w r i t t e n on i t ; r a t h e r than a c t i n g alarmed and i n s i s t i n g t h a t they s t r a i g h t e n out the mistake, she l e t i t go. "At t h e time I was undecided," she says,  "so I f i g u r e d ^that's  fate'."  O c c a s i o n a l l y r e s i s t a n c e s w e l l s up i n C a r o l i n e , pushing h e r t o q u e s t i o n  t h e d i c t a t e s o f medical wisdom  and making h e r say "I never want t o be t h i s again."  helpless  But p r i m a r i l y , hers i s a s t o r y o f worry, o f a  l i f e t h a t peaked f a r t o o e a r l y .  "I'm worried  how I'm  gonna make i t through t h e next p a r t , " she says. can you be t h i n k i n g o f 40 when you're 31?  "How  I always  wonder how i t ' s gonna be because i t ' s a l r e a d y  getting  t h i s bad." Lorna Lorna, a n a t i v e woman from a small  northern  community, f i r s t developed rheumatoid a r t h r i t i s a t t h e age  o f 20, s h o r t l y a f t e r t h e b i r t h o f h e r t h i r d She  child.  had had "one o f t h e l a s t o f t h e arranged  marriages" a t t h e age o f 15, had married a man 11 y e a r s her s e n i o r , t h e son o f h e r grandmother's dear f r i e n d . He was a d r i n k e r and a rock 'n' r o l l musician, and Lorna b a r e l y knew him, but she loved h e r grandmother very much, and wanted t o p l e a s e h e r .  124 Lorna and her s i s t e r had been r a i s e d by grandmother.  T h e i r own  their  mother had been rendered  e m o t i o n a l l y i n c a p a b l e of c a r i n g f o r c h i l d r e n  because  her husband, Lorna's f a t h e r , had d i e d when Lorna two-and-a-half. unbearable was  was  What made h i s death a l l the more the f a c t t h a t the couple had been f o r c e d  t o separate b e f o r e h i s death.  Because they both  belonged t o the Bear C l a n they were f o r b i d d e n t o marry. The c l a n had f o r c e d them a p a r t , and had sent Lorna's f a t h e r t o l i v e i n another v i l l a g e .  Lorna's mother  never f u l l y r e c o v e r e d from the l o s s of her husband. U n t i l Lorna was  12 y e a r s o l d she b e l i e v e d t h a t her  grandmother was  her mother, and t h a t her mother was  sister.  o n l y a f t e r many years t h a t Lorna  I t was  her  was  a b l e t o f o r g i v e her mother f o r a b d i c a t i n g her maternal r o l e ; Lorna's b r o t h e r s and s i s t e r s were never a b l e t o forgive. When Lorna was  11 y e a r s o l d , her g r a n d f a t h e r  contracted tuberculosis.  The r e s t of the f a m i l y  t e s t e d , and t h e i r r e s u l t s were n e g a t i v e .  was  However,  Lorna and her s i s t e r were f o r c e d t o l e a v e t h e i r grandparents, and were put i n t o a C a t h o l i c r e s i d e n t i a l school.  Lorna b e l i e v e s t h a t a u t h o r i t i e s used her  125 g r a n d f a t h e r ' s i l l n e s s as an excuse t o r e q u i r e  their  removal from t h e i r grandparent's home. Lorna f e l t ambivalent about the r e s i d e n t i a l school.  On one hand she r e s e n t e d the tyranny t h a t had  put her t h e r e , and wanted t o be home with her grandparents. affection school.  But on t h e o t h e r hand, she had a g r e a t  f o r Bishop O'Grady, the man who governed t h e Under h i s d i r e c t i o n ,  Lorna's C a t h o l i c f a i t h  flourished. Bishop O'Grady was h e l d i n such h i g h r e g a r d t h a t when he r e t i r e d , "even the e l d e r s c r i e d . "  His  s u c c e s s o r , Bishop O'Connor was not so w e l l l o v e d , and years l a t e r was charged w i t h s e x u a l l y a s s a u l t i n g some of the students i n h i s charge. As a g i r l , Lorna had had many dreams.  She dreamed  of becoming a lawyer, o f becoming a master i n m a r t i a l arts.  But when Lorna was 15, her a i l i n g grandmother,  f e a r f u l t h a t she d i d n o t have much time t o l i v e , t h a t i t was time t o pass t h e helm t o Lorna.  felt  And so she  arranged f o r Lorna t o don the c l o a k of adulthood, o f responsibility,  and duty.  She arranged f o r Lorna t o be  married t o a man she b a r e l y knew, t o become t h e f a m i l y caretaker.  126 Lorna had  always been d e s t i n e d  from an e a r l y age t r i b a l elder.  she had  She  been groomed t o become a  granted her grandmother's wishes  w i l l i n g l y , r e l i n q u i s h i n g her own s e r v i c e of So,  was  a s p i r a t i o n s i n the  others.  a t the age  diagnosis  for responsibility;  of 20,  she  a t t r i b u t e d her  of rheumatoid a r t h r i t i s t o s t r e s s .  not a simple t h e o r y , t i e d up as i t was  new But  hers  i n the  n o t i o n t h a t a r t h r i t i s can be overcome by a f i g h t i n g spirit.  She  a r t h r i t i s and  says t h a t 3 of the 7 women who  were i n h o s p i t a l w i t h her when she  f i r s t diagnosed, have now f a c t t h a t she Asked why,  was  experienced a r e m i s s i o n ,  a  attributes to t h e i r f i g h t i n g s p i r i t s .  w i t h her own  experienced a r e m i s s i o n s p i r i t had  had  f i g h t i n g s p i r i t , she had as w e l l , she  been weakened by  r e p l i e d that  "three k i d s and  the  pointed  t o the f a c t t h a t she had  some time as a t r e e p l a n t e r ; the c o l d and s u r e l y have c o n t r i b u t e d  'n'  of  legacy of a youth abandoned.  Lorna spoke of p h y s i c a l s t r e s s o r s as w e l l . grandmother had  her  a rock  r o l l husband," r e s p o n s i b i l i t y f o r a wide c i r c l e f a m i l y members, and  not  t o the onset and  Her spent  the damp must the  worsening  127 of  t h e symptoms, she reasoned.  Lorna accepts t h i s  e x p l a n a t i o n , coming as i t does from h e r grandmother. The f i r s t few years a f t e r t h e onset o f h e r a r t h r i t i s , Lorna became mired i n what she then was d e p r e s s i o n .  thought  Overwhelmed and unhappy, she s t r u g g l e d  on w i t h h e r new c o n d i t i o n , and w i t h t h e s t r e s s e s t h a t brought  i t about.  She now f e e l s ashamed a t t h e way she  was back then, a t t h e f a c t t h a t she l a b e l l e d h e r emotional s t a t e a " d e p r e s s i o n . "  She f e e l s she now  knows, g i v e n t h e events o f r e c e n t y e a r s , and h e r r e a c t i o n t o them, " r e a l " d e p r e s s i o n . The person t h a t emerged from those e a r l y years was a c h a r a c t e r she c a l l s  " F i g h t i n g Lorna."  She made a  r e s o l u t i o n t o l e a r n as much as she c o u l d about a r t h r i t i s and t o take what she l e a r n e d t o h e r people, many o f whom s u f f e r from a r t h r i t i s , and most o f whom have l i t t l e access t o good medical i n f o r m a t i o n and treatment.  She a l s o took i t upon h e r s e l f t o educate  the new d o c t o r s , who undertook  r o t a t i o n s i n her  community every two y e a r s , about what k i n d s o f i s s u e s and problems h e r people were f a c i n g .  Once, when she  f i g u r e d a p a r t i c u l a r d o c t o r d i d n o t know enough about a r t h r i t i s t o be t r e a t i n g people, she sent him down t o  128 Vancouver f o r more t r a i n i n g .  Now, she says,  "he knows  j u s t about as much as I do."  Her f r i e n d s s t a r t e d t o  c a l l her "Mrs. Ombudsman." In 1977 Lorna gave b i r t h t o her youngest daughter. By t h i s time her a r t h r i t i s was q u i t e bad, and f o r t h e f i r s t s e v e r a l years o f her daughter's l i f e ,  when t h e  requirement f o r p h y s i c a l c a r e - t a k i n g was g r e a t e s t , she c o u l d not care f o r her c h i l d h e r s e l f . she s t a r t e d asking console  her,  "why me?."  I t was then t h a t  Her f r i e n d s t r i e d t o  s a y i n g t h a t she was meant f o r some h i g h e r  purpose i n t h i s l i f e , impeded by a r t h r i t i s .  a purpose t h a t would not be Though she c l u n g t o t h e i r words  she was h u r t i n g t e r r i b l y i n s i d e . Over t h e y e a r s Lorna has been h e a v i l y w i t h the band c o u n c i l .  involved  Because she has such a  tremendous knowledge o f h e r people's h e r i t a g e , and because she speaks her n a t i v e language f l u e n t l y , she was nominated t h r e e times t o become c h i e f .  She  d e c l i n e d , however, because she f e l t she was s t i l l t o o young. Lorna says t h a t when she was a c h i l d she o n l y knew one  person w i t h a r t h r i t i s , her p a t e r n a l  Now, she says,  grandfather.  so many people have i t t h a t i t seems  129 epidemic.  She i s not sure whether g e n e t i c s has played  a r o l e , but f e e l s q u i t e sure t h a t t h e change i n t h e food t h a t her people e a t has c o n t r i b u t e d t o t h e r i s e i n the i n c i d e n c e o f a r t h r i t i s . But more i m p o r t a n t l y ,  Lorna f e e l s t h a t i t i s t h e  tremendous s t r e s s o f l i v i n g on r e s e r v a t i o n s , and o f f e e l i n g s t r i p p e d o f c u l t u r a l i d e n t i t y , t h a t has caused so much a r t h r i t i s i n the n a t i v e people. not o n l y l e d t o a r t h r i t i s ,  The s t r e s s has  i t has l e d t o e x c e s s i v e  d r i n k i n g , which i n t u r n worsens t h e symptoms o f arthritis.  Lorna speaks w i t h g r e a t sorrow about t h e  s t a t e o f her people, and seems t o see a r t h r i t i s not o n l y as a consequence o f t h i s s o r r y s t a t e but a l s o as a s o r t o f metaphor f o r t h e s p i r i t u a l c r i p p l i n g t h a t has been experienced by t h e n a t i v e people i n t h e l a s t few generations. In 1989 Lorna s t a r t e d t o go on " e l d e r t r i p s , " gatherings  o f n a t i v e e l d e r s from across t h e p r o v i n c e .  U s u a l l y people are not i n v i t e d on these t r i p s  until  they about 60 y e a r s o f age, and she was o n l y 40. the knowledge t h a t she had, combined w i t h her l e a d e r s h i p experience and t h e grooming t h a t her  But  130 grandmother had  done, had  prepared her e a r l y t o become  an e l d e r , a p o s i t i o n h i g h e r than t h a t of a c h i e f . But Lorna's a b i l i t y  t o l e a d her people  was  c u r t a i l e d f o r a long p e r i o d s t a r t i n g i n 1991. h o s p i t a l she witnessed a s h o o t i n g  While i n  a t c l o s e range.  That  experience, coupled w i t h the f a c t t h a t her name and f a c e were shown on t e l e v i s i o n coverage of the  event  ( d e s p i t e the p r o b a b i l i t y t h a t the k i l l i n g was  gang-  r e l a t e d ) put her i n t o a profound d e p r e s s i o n she  i s now  j u s t s t a r t i n g t o emerge.  She  from which  had  a l l of  the  symptoms of Post-Traumatic S t r e s s D i s o r d e r ,  according  t o her p s y c h i a t r i s t ; she had  panic  nightmares and  a t t a c k s , and  c o u l d not t u r n the l i g h t s out a t n i g h t .  The  i n c i d e n t even changed the way  shooting  of her a r t h r i t i s , Now  she  thought  dwarfing i t i n comparison.  t h a t Lorna i s s t a r t i n g t o r e c o v e r ,  she  i s able  t o devote h e r s e l f once again t o her l i f e ' s work i n c u l t u r a l teaching  and  her purpose i n l i f e n a t i v e and  native leadership.  i s t o b r i d g e the gap  She  says t h a t  between the  non-native c u l t u r e s , and t o reach out  to  young n a t i v e people, encouraging them t o l e a r n about and p r e s e r v e t h e i r c u l t u r e and h e r i t a g e .  Her  grandmother always t o l d her t h a t " e v e r y t h i n g  has  a  131 purpose," and the e l d e r s always say t h a t the t r u t h w i l l be r e v e a l e d as one ages, t h a t t h e p i e c e s o f t h e p u z z l e w i l l come t o g e t h e r .  LOrna has come t o b e l i e v e  this.  Marilyn In 1991, a t t h e age o f 27, M a r i l y n was working i n the s h i p p i n g and r e c e i v i n g department o f a l a r g e hardware s t o r e , p u t t i n g s t i c k e r s on merchandise w i t h a p r i c e gun. and  The j o i n t s o f her f i n g e r s s t a r t e d t o s w e l l  a t f i r s t she thought t h a t t h e r e p e t i t i v e motions o f  u s i n g t h e p r i c e gun were c a u s i n g  the swelling.  But  a f t e r a w h i l e she s t a r t e d t o worry t h a t maybe i t was something e l s e ; as she e x p l a i n s  i t i n her own f o l k s y  way, "oh these a r e awful sore t o be doing t h a t . " M a r i l y n went t o t h e d o c t o r  and was diagnosed  almost immediately as having rheumatoid a r t h r i t i s . had  not known anyone w i t h RA and has very  She  little  knowledge o f medicine, so she d i d not know what t o expect.  Still  she thought o f her a r t h r i t i s as having  been caused by overuse. diagnosis  Within  a month o f h e r  she s t a r t e d t o g e t s w e l l i n g i n her knees,  elbows, and shoulders  as w e l l .  Since then her  a r t h r i t i s has been c o n t i n u a l l y a c t i v e ; though some  132 times a r e b e t t e r than o t h e r s , the p a i n and inflammation have never l e t up. At f i r s t M a r i l y n had a tough time e m o t i o n a l l y , and had  no one she f e l t she c o u l d t a l k t o about her  arthritis:  "I f i n d i t hard [ t o have a r t h r i t i s ]  when you  are young 'cause you don't have someone t o t a l k t o , l i k e me and you, and s a y i n g L i k e we never d i d . " supportive  x  hey, how do you f e e l ? ' .  Her f a m i l y was not e m o t i o n a l l y  e i t h e r ; they b e l i e v e i n keeping one's  troubles to oneself.  P r i v a t e l y , M a r i l y n spent much o f  her time c r y i n g and f e e l i n g very Marilyn's  hopeless.  f i r s t s t a y a t G.F. Strong happened e a r l y  i n t h e course o f her i l l n e s s  and was h e l p f u l t o h e r i n  l e a r n i n g t o cope with her a r t h r i t i s .  " I t helped a l o t  'cause you would see worser people than you and would think  *well i f they l e a r n e d t o l i v e with i t , and they  are o l d e r , w e l l I can, hey'."  T h i s idea t h a t one j u s t  has t o " l e a r n t o l i v e w i t h i t " i s repeated so o f t e n i n Marilyn's  s t o r y t h a t i t i s l i k e a mantra.  "Learning  t o l i v e w i t h i t " means, i n p a r t ,  l e a r n i n g t o f o l l o w the i n s t r u c t i o n s o f d o c t o r s and books t o the l e t t e r .  M a r i l y n f o l l o w s a r i g i d program  of e x e r c i s e and r e s t , b e l i e v i n g t h a t both have a  133 beneficial effect.  She puts i c e on her j o i n t s  r e g u l a r l y , and takes her medications e x a c t l y as directed.  In f a c t , her adherence t o the p r e s c r i b e d  program has become her way o f l i f e , t a k i n g up so much time t h a t she b a r e l y has time f o r anything e l s e . P a r a d o x i c a l l y , t h i s focus on treatment off  takes her mind  o f t h a t f o r which she i s being t r e a t e d .  your mind o f f o f — I  " I t takes  keep going, then you don't worry  about t h i n g s . . . l i k e f i r s t , when I g o t the rheumatoid arthritis  l i k e I w o r r i e d o h w e l l , I got rheumatoid x  a r t h r i t i s ' and you would be s t r e s s e d out, and you would cry,  and t h a t ' s no good." Though M a r i l y n a t f i r s t denied t h a t she t h i n k s  s t r e s s a f f e c t s her a r t h r i t i s , she went on t o e x p l a i n t h a t i t i s important t o have a p o s i t i v e o u t l o o k so t h a t the a r t h r i t i s w i l l not p r o g r e s s : " l i k e you can't s o r r y 'cause you f i n d arthritis it."  feel  i f you do t h e s t r e s s — t h e  i s gonna g e t worse and you have t o l i v e w i t h  So she d i s t r a c t s h e r s e l f w i t h her medical  treatment,  shuts the f u t u r e out o f her mind, and  r e p e a t s her mantra. M a r i l y n ' s ways o f coping w i t h her a r t h r i t i s reflect  the k i n d s o f coping i n which her f a m i l y - o f -  134 o r i g i n engages.  Asked i f h e r f a m i l y had s t r u g g l e d  through some d i f f i c u l t nothing.  times M a r i l y n c o u l d t h i n k o f  But she l a t e r s a i d t h a t her f a t h e r had l e f t  her mother s h o r t l y a f t e r h e r own b i r t h , l e a v i n g h e r mother t o care f o r 7 c h i l d r e n alone.  She seemed t o  have no a p p r e c i a t i o n o f t h e s t r a i n her mother must have been under, s a y i n g o n l y t h a t h e r mother d i d n ' t complain about anything.  But when I q u e r i e d h e r about whether  she saw any s i m i l a r i t i e s between how she was coping and how her mother coped she s a i d t h a t h e r mother " l e a r n e d to  l i v e with i t — l i k e The q u e s t i o n  me."  "why me?" dogged M a r i l y n i n t h e e a r l y  days o f her a r t h r i t i s and she seems t o have o n l y one answer: she i s being punished f o r doing bad t h i n g s , p a r t i c u l a r l y f i g h t i n g w i t h h e r s i s t e r : "When I have t h e c o r t i s o n e i n j e c t i o n , probably s i s t e r , i t ' s payback time. and  I said  because I was mean t o my  She h i t s me on t h e shoulder  *0w, I j u s t g o t my i n j e c t i o n , be n i c e ' . . . I  f i g h t with her a l l t h e time.  L i k e we're a year  So now i t ' s payback time f o r h e r t o g e t me." M a r i l y n ' s simple  logic.  This explanation f i t s  apart.  Such i s nicely  with h e r b e l i e f t h a t she must simply swallow t h e f a c t t h a t she has a r t h r i t i s and c a r r y on as b e s t she can,  135 ( i . e . , learn t o l i v e with i t ) .  S t i l l , M a r i l y n looks t o  her C a t h o l i c f a i t h f o r redemption.  She prays t o God  t h a t she might have a r e m i s s i o n . Marilyn continues t o f i l l  h e r days w i t h  p r e s c r i b e d t o h e r by h e r d o c t o r .  activities  She t r i e d t o r e t u r n  t o h e r o l d job about a year a f t e r t h e onset o f h e r a r t h r i t i s b u t c o u l d n ' t cope; t h a t experience  convinced  her t h a t once you have a r t h r i t i s you a r e simply t o work.  unable  D e s p i t e t h i s she remains q u i t e p h y s i c a l l y  a c t i v e , swimming everyday occasionally.  and even c r o s s - c o u n t r y s k i i n g  She sees h e r s e l f c o n t i n u i n g i n d e f i n i t e l y  i n t h i s manner and d e l i b e r a t e l y t r i e s n o t t o t h i n k t o o much about t h e f u t u r e .  Instead she has s e t t l e d  s t o i c r e s i g n a t i o n : "I'm doing b e t t e r .  into  Like I learned  t o l i v e w i t h i t now, by g e t t i n g used t o t h e p a i n and how  t o cope with i t ,  and now i t ' s a r o u t i n e .  You g o t  used t o i t . " Jess J e s s i s a 25-year-old S i k h woman, born i n London, England,  and r a i s e d , f o r t h e l a t t e r h a l f o f h e r  c h i l d h o o d , i n Canada.  Though h e r parents h o l d on t o  Indian t r a d i t i o n s , she i s f a r from t r a d i t i o n a l  herself.  Whereas Indian t r a d i t i o n d i s c o u r a g e s g i r l s and women  136 from c u t t i n g t h e i r h a i r , f o r example, she shaves her head and back.  dyes the s t u b b l e e x o t i c c o l o u r s when i t grows  She  engages i n body p i e r c i n g and has  h e r s e l f branded. life, She  She  "too  a c t i v e l y r e b e l s a g a i n s t s t r u c t u r e and  she were being  had  i s drawn t o the underside of  s a y i n g she never wants l i f e t o be  and q u i t s c h o o l  even  i n grade 10 because she  easy."  institutions,  f e l t as though  indoctrinated.  F i v e years ago  J e s s was  working i n London a t a  job she adored when she s t a r t e d t o have symptoms. f i r s t one  city  knee became p a i n f u l and,  new At  although she walked  a l o t , she wondered whether she wasn't g e t t i n g enough e x e r c i s e because she was London tube.  Her  i n the h a b i t of t a k i n g  l i v e - i n b o y f r i e n d became i n c r e a s i n g l y  concerned as her symptoms worsened and the mornings he would say t o her,  spread, and  feverishness.  Jess's condition deteriorated r a p i d l y .  I t became  harder f o r her t o get ready f o r work i n the  morning and before She  in  "you were j u s t l i k e a  r a d i a t o r l a s t n i g h t , " r e f e r r i n g t o her  harder and  the  long i t was  t r i e d her b e s t t o conceal  w i t h i n a month or two  t a k i n g her t h r e e her d i f f i c u l t i e s  her performance a t work  s u f f e r i n g enough t h a t i t was  hours.  remarked on by  but was  her  137  supervisor.  He asked her whether she had  started  l o s i n g i n t e r e s t i n the job, and t o l d her t h a t she needed t o i n c r e a s e her e f f o r t as she was  still  only i n  the p r o b a t i o n a r y p e r i o d of her employment. At her b o y f r i e n d ' s u r g i n g , J e s s f i n a l l y saw  a  d o c t o r a f t e r t h r e e months or so of p r o g r e s s i v e l y worsening symptoms. inflammation  By t h a t time, she says, she  " i n a l l my  d i d n ' t even know I had."  j o i n t s , and I have j o i n t s I The d o c t o r ordered  t e s t s and c a l l e d her immediately, rheumatologist.  had  But she was  blood  a d v i s i n g her t o see a  o n l y two days away from a  scheduled h o l i d a y back i n Canada, and she i g n o r e d her doctor's advice.  She says now  t h a t she was  i n a s t a t e of d e n i a l , and t h a t she would go away."  very much  j u s t "pretended i t  Besides, her b o y f r i e n d persuaded her  t h a t whatever was  c a u s i n g the symptoms might be  stress-  r e l a t e d and t h a t a h o l i d a y would do her good. When J e s s a r r i v e d i n Canada her mother thought looked awful. irritation saw  But her mother's alarm was  met  she  with  from J e s s ; she f e l t impatient w i t h what she  as her mother's t y p i c a l dramatic o v e r r e a c t i o n t o  things.  Still  d o c t o r who  she consented  t o go t o her f a t h e r ' s  gave her " r u n - o f - t h e - m i l l " a n t i - i n f l a m m a t o r y  138 drugs without a c t u a l l y l o o k i n g f o r the cause o f J e s s ' s symptoms. A f a m i l y t r i p t o Calgary, be t h e l a s t week o f J e s s ' s  i n what was supposed t o  3-week h o l i d a y , f i n a l l y  convinced her t h a t she needed t o g e t t o t h e bottom o f what was happening t o her.  The c a r t r i p was 14 hours  long, w i t h o n l y o c c a s i o n a l s h o r t breaks, and she stiffened  up so badly t h a t i t took s e v e r a l people t o  h e l p her out o f the c a r . Immediately upon her r e t u r n t o Vancouver J e s s went t o another doctor who t o l d h e r she needed t o be admitted t o h o s p i t a l through emergency t h a t same n i g h t . Her  parents had t o a c t u a l l y c a r r y her out t o the c a r ;  her p a i n was so bad t h a t she c o u l d not c o o r d i n a t e h e r limbs w e l l enough t o walk.  The o r d e r l y a t t h e h o s p i t a l  asked i f she were i n f o r a c o o r d i n a t i o n problem. thought I'd be out o v e r n i g h t , " I guess, The  she says.  "I  "I was very,  ignorant." doctor diagnosed J e s s w i t h " p o l y a r t h r i t i s , " a  n o n - s p e c i f i c term t h a t simply several joints."  She l a t e r l e a r n e d t h a t she has  rheumatoid a r t h r i t i s . meant," she says.  means " a r t h r i t i s i n  "None o f us knew what t h a t  " I t wasn't something I c o u l d hang on  139 to,  l i k e cancer or something.  was  t a l k i n g about."  I had  no i d e a what he  But J e s s q u i c k l y r e a l i z e d t h a t her d i s e a s e s e r i o u s ; an o c c u p a t i o n a l h o s p i t a l and questions  information.  t e a r s , " J e s s says. g i v i n g me me  t h e r a p i s t came t o see her i n  spent f o u r hours "bombarding" her  and  "The  "When she  way  a l i f e sentence.  but I c o u l d  with  l e f t I burst into  she made i t sound she I t was  pieces,  back t o London, because t h a t was But because her  unexpectedly, she r e t u r n e d live.  The  not  it."  A f t e r two-and-a-half weeks i n h o s p i t a l J e s s  l i f e was.  was  s t a r t i n g t o dawn on  [only] take i t i n b i t s and  l i k e she'd presented  was  where she  " h o l i d a y " had t o no  felt  flew her  been extended  job and no p l a c e  s t r e s s of l o o k i n g f o r work and  apartment, p l u s the f a c t t h a t she had  a  to  new  discontinued  her  m e d i c a t i o n s , "kept [her] i n a f l a r e - u p s t a t e f o r q u i t e a long time."  The  permanence of her c o n d i t i o n  was  s t a r t i n g t o become a r e a l i t y f o r her: I t was a couple of months a f t e r t h a t when I was l i v i n g pn my own, I found i t r e a l l y hard because I was s t i l l r e a l l y s i c k and I was s t i l l g e t t i n g t h i n g s l i k e f e v e r s and my m o b i l i t y s t i l l wasn't good. I s t a r t e d t o r e a l i z e t h a t maybe t h i s was something t h a t I'd have t o s t a r t adapting t o .  140  J e s s remained i n London f o r t h e next two years, working off-and-on because she was so s i c k . missing  only  Then,  her f r i e n d s and f a m i l y , and t i r e d o f t h e  f r u s t r a t i o n o f t r y i n g t o g e t medical and s o c i a l s e r v i c e s i n England's f l o u n d e r i n g economy, she decided t o r e t u r n home t o Vancouver. J e s s ' s r e t u r n t o h e r p a r e n t s home d e l i g h t e d h e r mother whose l i f e ' s purpose as an Indian woman i s t o care f o r h e r f a m i l y .  But J e s s f e l t smothered by her  mother, f e l t t h a t she had been put i n an " i n v a l i d box." Her parents b e l i e v e t h a t a r t h r i t i s i s " i n your system" and t h a t "something t r i g g e r s i t , " a b e l i e f i n l i n e w i t h what J e s s has heard and read,  and a b e l i e f t h a t she  t h e r e f o r e espouses (though they t h i n k t h e t r i g g e r must have been t h e c o l d o f London, a n o t i o n she r e j e c t s ) . But some o f t h e i r ideas a r e l e s s p a l a t a b l e t o her; f o r i n s t a n c e , one o f h e r aunts i n I n d i a was supposedly miraculously  r e l i e v e d o f h e r a r t h r i t i s by i n g e s t i n g a  p l a n t t h a t o n l y grows i n I n d i a . not  J e s s i s d e f i n i t e about  jumping t o any treatment on t h e b a s i s o f anecdotal  evidence: "I'm not t h e r e and I'm not about t o go over for  a treatment t h a t I've o n l y ever heard o f done on  one  person."  141 Another t h i n g t h a t r a n k l e d J e s s when she l i v e d w i t h h e r parents was t h e tendency  o f r e l a t i v e s and  f r i e n d s , p a r t i c u l a r l y those n e w l y - a r r i v e d from I n d i a , t o come over t o show t h e i r concern, then t o t a l k t o h e r parents about h e r i n h e r presence. [are]  "Women i n I n d i a  n o t seen as human beings i n s o c i e t y , " she says.  "There i s no reason why they should be t a l k e d t o ; they are e i t h e r t a l k e d a t o r t a l k e d about.  But they a r e n o t  t a l k e d t o as equals, e s p e c i a l l y by men."  After eight  months o f l i v i n g w i t h h e r parents she decided t o s t r i k e out on h e r own. Over t h e p a s t t h r e e years o r so J e s s has gone through p e r i o d s o f work, o f unemployment, o f h o s p i t a l i z a t i o n , and o f s i t t i n g w a i t i n g f o r s u r g e r y . She worked f o r a year w i t h t h e DisAbled Women's Network on a p r o j e c t d e a l i n g w i t h s u i c i d e and d i s a b l e d women. She was an a c t i v e v o l u n t e e r w i t h an AIDS o r g a n i z a t i o n , and worked on a peer c o u n s e l l i n g v i d e o p r o j e c t f o r people w i t h a r t h r i t i s .  In g e n e r a l she has a s t r o n g  i n t e r e s t i n t h e advocacy i s s u e s o f people w i t h disabilities.  "I've been t o l d from t h e beginning t h a t  I'm doing t o o much," she says.  "A l o t o f t h a t ' s g o t t o  do w i t h t h e f a c t t h a t I'm n o t 84 years o l d . "  142  J e s s ' s concern f o r h e r s e l f focuses l e s s on the p h y s i c a l a s p e c t s of her a r t h r i t i s than on t h e i r and emotional  social  consequences:  I know the p h y s i c a l p a r t of i t i s important, but I guess what gets me i s the o t h e r ways t h a t i t has a f f e c t e d me. Because, l i k e , I'm a r e a l c o n t r o l freak. I f e e l I have l e s s c o n t r o l over them than I do over what i t does t o me p h y s i c a l l y . . . The f i r s t t h i n g t h a t I always s t a t e t h a t i t has a f f e c t e d i s s e l f - e s t e e m . And then t h a t branches o f f into other things. L i k e t h a t ' s the c o r e from which t h i n g s l i k e not b e i n g a b l e t o work o r not being a b l e t o go out o r how I f e e l about myself e m o t i o n a l l y or p h y s i c a l l y . A f t e r she had stopped denying her a r t h r i t i s she went through a l o n g p e r i o d of t r y i n g t o c o n c e a l her a r t h r i t i s from o t h e r people.  She d i s l i k e  r e a c t i o n t o her when they l e a r n e d she had She was  people's arthritis.  a f r a i d of b e i n g babied, on one hand, but on the  o t h e r hand she d i d not want her problems minimized either.  Often on h e a r i n g t h a t she had a r t h r i t i s  would say something my  arm,"  people  l i k e "oh yeah, I had t e n d o n i t i s i n  not r e a l i z i n g the v a s t d i f f e r e n c e between a  l o c a l mechanically-produced problem and a systemic illness.  She was  a f r a i d , too, of t h i n g s l i k e d b e i n g  denied a job because of people t h i n k i n g t h a t they c o u l d n ' t count on her.  So she pushed on, denying her  143 p a i n t o other people,  and r e p l a c i n g v u l n e r a b i l i t y  with  attitude. The it  question  "why roe?" makes J e s s c r i n g e because  "reeks of hopelessness."  When she hears of people  a s k i n g t h i s q u e s t i o n she f e e l s i r r i t a t e d and wants t o say "get your s h i t t o g e t h e r . "  For her i t i s a u s e l e s s  q u e s t i o n t h a t takes people away from d e a l i n g with practicalities: I don't t h i n k t h e r e ' s always a reason f o r something and l i f e i s too s h o r t going around l o o k i n g f o r them i f they are not t h e r e . I'm not s a y i n g I d i d n ' t , but I guess the reasons I would look f o r would be more p r a c t i c a l . L i k e more t h i n g s t h a t I t h i n k t h a t might have been i n my c o n t r o l t h a t brought i t on. L i k e s t r e s s or foods t h a t I e a t , or the environment I l i v e i n . T h i s focus on p r a c t i c a l i t i e s may c u l t u r a l background.  be a product  In I n d i a , she says,  of  her  "disability  i s the norm... because of t h i n g s l i k e environment, poverty, about  and m a l n u t r i t i o n , so people don't t h i n k  twice  it." Jess s t i l l  setbacks  s t r u g g l e s with f l a r e - u p s and with  produced by lengthy h o s p i t a l i z a t i o n s .  says she has  l e a r n e d something about her own  s t r e n g t h from the experience  of  the  But  she  inner  arthritis:  Now knowing t h a t I have the s t r e n g t h t h a t I have. L i k e b e f o r e i t wasn't something t h a t I would ever doubt, but I never had any cause t o put i t i n t o  144 a c t i o n . . . I d i d n ' t know t h a t I wouldn't g i v e myself a p i t y t r i p and I d i d n ' t know t h a t I wouldn't g i v e i n t o a l o t o f t h i n g s I d i d n ' t want t o g i v e i n t o . . . I d i d n ' t know t h a t I wouldn't j u s t get t i r e d o f myself a f t e r awhile. I guess I r e a l l y d i d n ' t know what my a t t i t u d e would be because a h y p o t h e s i s i s something so d i f f e r e n t from what you have t o l i v e with. Robin In around 1962, when Robin was 2 years o l d , she developed a f e v e r , swollen suggestive  of a strep throat.  family doctor, medicine.  j o i n t s , and symptoms She was taken f i r s t t o a  then t o a s p e c i a l i s t i n i n t e r n a l  S e v e r a l t e n t a t i v e diagnoses were o f f e r e d ,  among them rheumatic f e v e r and s c a r l e t f e v e r .  But h e r  parents "were never happy w i t h t h a t because [ t h e i l l n e s s ] d i d not r e s o l v e i t s e l f l i k e a v i r u s would do...  i n t h e i r experience s c a r l e t f e v e r doesn't  last  f o r a year, and rheumatic f e v e r , i f i t does l a s t f o r a year, c e r t a i n l y doesn't keep going on and on w i t h a l l t h i s j o i n t involvement."  When a new American  s p e c i a l i s t came t o town, Robin's parents took h e r t o see him, hoping t h a t he c o u l d shed some l i g h t on h e r ailment.  Within  5 minutes o f s e e i n g h e r he pronounced  her as having j u v e n i l e rheumatoid a r t h r i t i s . she  Though  l i v e d i n a small town an hour o r two o u t s i d e o f  Vancouver, she was r e f e r r e d t o t h e A r t h r i t i s Centre  145 here f o r s p e c i a l i z e d treatment,  and she e s t a b l i s h e d  w i t h them a r e g u l a r p a t t e r n o f check-ups and treatments t h a t c o n t i n u e s t o t h i s day. The p r e v a i l i n g wisdom i n t h e 1960s was t h a t parents who have young c h i l d r e n w i t h a r t h r i t i s ought t o t r e a t them as they would any o t h e r c h i l d , not g i v i n g them s p e c i a l treatment  or p r i v i l e g e s .  Robin's parents  t r i e d t o f o l l o w t h i s a d v i c e t o t h e l e t t e r , though they found i t d i f f i c u l t t o do s o .  She says: "They were, I  t h i n k , always upset," because they knew so w e l l h e r p a i n and h e r s t r u g g l e .  Though she d i d not know i t a t  the time, h e r parents h y p o t h e s i z e d t h a t h e r a r t h r i t i s had been t r i g g e r e d by c h i c k e n pox, by s t r e p t h r o a t , o r by t h e DPT v a c c i n a t i o n . By t h e time Robin s t a r t e d s c h o o l h e r a r t h r i t i s was physically  apparent:  I looked d i f f e r e n t . I mean from t h e time I was about 6 years o l d I was s t a r t i n g t o look arthritic. I had a s t i f f neck t h a t I c o u l d n ' t move, I had sore and swollen knees, had p u f f y w r i s t s and hands, and bent elbows, and, you know, t h a t s t a r t e d f a i r l y e a r l y , and i t wasn't t o o deforming a t t h a t p o i n t , but I was v e r y s t i f f and I moved s t i f f l y , my g a i t was s t i f f . . . and I f e l t l i k e I was s i c k . Though she had f o u r o r f i v e good f r i e n d s a t s c h o o l , h e r a r t h r i t i s was n o t i c e d by t h e o t h e r c h i l d r e n and some o f  146 the boys used t o t e a s e h e r and c a l l h e r names. Sometimes people would ask h e r how she g o t a r t h r i t i s and she would have t o say "Nobody knows what causes i t , nobody knows why I have  it.  1 1  Robin was w e l l aware t h a t she was d i f f e r e n t other c h i l d r e n .  from  " I saw myself as d i s a b l e d , " she says.  Her p h y s i c a l l i m i t a t i o n s prevented h e r from p a r t i c i p a t i n g f u l l y i n school a c t i v i t i e s .  When t h e  c l a s s p l a y e d team games i n gym c l a s s , f o r example, she was  always appointed scorekeeper by t h e t e a c h e r . But,  she says, " I d i d l o s e i n t e r e s t .  I was a b i t o f a  daydreamer so I u s u a l l y kept s c o r e and then I'd k i n d o f s t a r t t h i n k i n g about something me what's t h e s c o r e ? ' . x  and k i d s would y e l l a t  And I'd go g e e , I don't A  know'." Things were n o t easy a t home e i t h e r .  " I had a  b r o t h e r and a s i s t e r and o f t e n I would g e t more a t t e n t i o n than they would," Robin says, "and they would feel really resentful. thing.  So i t was s o r t o f a d i f f i c u l t  I t was hard f o r me and i t was hard f o r my  siblings."  Her mother bore most o f t h e r e s p o n s i b i l i t y  f o r h e r c o n s i d e r a b l e p h y s i c a l c a r e , and had t o endure  147 the  c o n s t a n t f e e l i n g t h a t her e f f o r t s were o n l y  t o r t u r o u s f o r Robin: I j u s t c o u l d n ' t move my j o i n t s i n the morning, and my mom would have t o run a bath f o r me so t h a t c o u l d a c t u a l l y become mobile enough so t h a t I c o u l d a c t u a l l y walk t o s c h o o l . I remember having a bath every day from the time I was about 7 o r 8 u n t i l the time I was a teenager. I would always have t h i s warm bath i n the morning and I'd go i n t h e r e and I'd not move v e r y much and my mom would be coaxing me i n the tub "move a l i t t l e b i t , t r y t o bend your knees, t r y t o move your t o e s , t r y t o bend your elbow, t r y t o move your w r i s t " , t h i n g s l i k e t h a t . And I used t o c r y . I remember c r y i n g a l o t . I remember c r y i n g a t n i g h t because I was in pain. I remember c r y i n g i n the mornings and not wanting t o go t o s c h o o l , and my mom would have t o f o r c e me out of the door w i t h my l i t t l e lunch bucket and I remember c r y i n g sometimes as I was going out the door because I f e l t so t i r e d and I f e l t so much p a i n t h a t I d i d n ' t want t o go t o school. O c c a s i o n a l l y , even as a young c h i l d , Robin would s t a r t t o wonder i f maybe t h i s were a l l i n her head, i f t h e r e were something wrong w i t h her p s y c h o l o g i c a l l y .  Yet her  many t r i p s t o the d o c t o r , and the s e r i o u s concern of those around her seemed t o r e f u t e t h i s p o s s i b i l i t y .  So  then she would s t a r t t o t h i n k maybe i f she " t r i e d t o be r e a l l y good, o r maybe i f [she] t r i e d t o work r e a l l y hard, i t would go away."  She occupied h e r s e l f w i t h  t h i n k i n g t h a t " i f [she] j u s t found some key t o t h i s p u z z l e [she] c o u l d unlock t h i s p u z z l e and e v e r y t h i n g would be changed."  But a t the same time something  148 i n s i d e her t o l d her t h a t " l a c k o f e x e r c i s e d i d n ' t cause it,  o r l a z i n e s s d i d n ' t cause i t , so even as a l i t t l e  child  [she] k i n d o f understood t h a t t h e r e was not much  [she] c o u l d do about i t .  So [she] l e a r n e d t o l i v e  with  it." During her elementary s c h o o l years Robin developed a r i c h fantasy l i f e ,  and she read books v o r a c i o u s l y .  At s c h o o l she was a h i g h a c h i e v e r , and she a l s o e x c e l l e d i n her musical  s t u d i e s , developing  a great  fondness f o r t h e piano. High s c h o o l i n t r o d u c e d a whole new s e t o f problems i n t o Robin's l i f e .  The p h y s i c a l demands on her were  much g r e a t e r because she had t o use a l o c k e r , t o change classrooms between s u b j e c t s , and t o climb s t a i r s f o r a couple o f c l a s s e s .  A l s o , her appearance became a much  b i g g e r i s s u e f o r her and her poor s e l f - i m a g e her sense o f a l i e n a t i o n from her peers. i t hard," she says. puberty  increased  " I t j u s t made  " E s p e c i a l l y when you a r e i n  and looks a r e so important  and teenagers a r e  always t r y i n g t o look good f o r each o t h e r and f i t i n t o groups and f i t i n t o c l i q u e s .  And then I t h i n k more  than ever I f e l t on the o u t s i d e . " d i f f i c u l t y , t h e exhaustion,  The p h y s i c a l  and t h e sense o f i s o l a t i o n  149 began t o take t h e i r t o l l rapidly.  I t was  and  her c o n d i t i o n d e t e r i o r a t e d  a t t h i s time t h a t she began t o n o t i c e  a r e l a t i o n s h i p between the d i s e a s e a r t h r i t i s and  a c t i v i t y of  her  stress.  Around t h i s time her s p i r i t s were a t an a l l - t i m e low: I t h i n k by the time I was a teenager I b a s i c a l l y had almost g i v e n up. I had a very b i g c h i p on my shoulder a t t h a t p o i n t and f e l t t h a t a f t e r having a l l t h i s a l l my c h i l d h o o d t h a t t h e r e was no use f i g h t i n g t h i s d i s e a s e anymore. I t was j u s t gonna do what i t wanted anyway. So why e x e r c i s e ? And why make myself e x e r c i s e because I would be i n more p a i n a f t e r e x e r c i s i n g and I would s t i l l have nothing t o a c h i e v e . . . i t was l i k e an u p h i l l b a t t l e and I was always s l i p p i n g back a l i t t l e more. I guess somewhere i n my head I always had s o r t of a sense of d e s p e r a t i o n . To add  i n s u l t t o i n j u r y Robin was  forced to  up the piano because her f i n g e r s were so affected.  T h i s was  and  then t h a t she s t a r t e d a s k i n g  i t was  badly  the l a s t straw i n the g r e a t b a t t l e  a long time she found no answer t o t h i s  "why  me?".  She  t o be admitted t o G.F.  For  question.  Robin's c o n d i t i o n d e t e r i o r a t e d t o the p o i n t she had  give  that  Strong f o r treatment.  c a l l s t h i s a r e a l t u r n i n g p o i n t f o r her;  grown up i n a small town, more i s o l a t e d than c h i l d r e n because of her a r t h r i t i s .  She  she  had  other  f e l t as though  she were on a " b i t of an adventure because [she] was  by  150 [ h e r ] s e l f i n t h i s p l a c e w i t h other a d u l t s and  [she]  c o u l d pretend t o be an a d u l t . "  a  Though she was  f r i g h t e n e d by some of the people she saw e s p e c i a l l y young male p a t i e n t s who  little  there,  used drugs  and  engaged i n rowdy behaviour, the experience was  a  good one  disease  and  how  f o r her.  She  l e a r n e d a l o t about her  t o care f o r i t , and  she a l s o f e l t happy t h a t  her parents c o u l d have a break from At the age ever a t G.F.  her.  of 15 Robin became the youngest person  Strong t o have h i p replacement  "There's a l i t t l e f a c t , she says,  n o t o r i e t y i n t h a t ! " she  she  felt  a r t h r i t i s patients.  surgery.  laughs.  A f t e r having f e l t  the  older  i s o l a t e d f o r so  she r e v e l l e d i n a l l the a t t e n t i o n t h a t  showered upon her.  She  s i n g f o r other p a t i e n t s . f e l t t h a t she was  In  like a real celebrity, getting  a l o t of a t t e n t i o n both from the s t a f f and  many years,  very  used t o p l a y her g u i t a r But more i m p o r t a n t l y ,  was  and she  i n a p o s i t i o n t o h e l p many of them:  So many people were wracked w i t h p a i n w i t h a r t h r i t i s and d e a l i n g w i t h g e t t i n g the d i s e a s e . I had i t so long i t was l i k e o l d hat t o me by t h a t time. I'd p r e t t y w e l l d e a l t w i t h a l l these awful t h i n g s e a r l y on i n my wee youth. I know t h a t t h i n k i n g back on i t p o s s i b l y t h a t maybe I gave people hope t h a t j u s t had the d i s e a s e , t h a t maybe had f e a r s t h a t they would become unhappy, b i t t e r people. They c o u l d see t h a t a f t e r having the d i s e a s e a long time you don't have t o be unhappy  and b i t t e r , t h a t you c o u l d have a good q u a l i t y o f life. T h i s experience  s t a r t e d Robin t h i n k i n g t h a t she had an  a b i l i t y t o h e l p other people,  and she s e t h e r s i g h t s on  becoming a s o c i a l worker. Robin had t h r e e more s t a y s a t G.F. Strong over t h e remainder o f h e r h i g h s c h o o l y e a r s .  These s t a y s gave  an unexpected boost t o h e r s o c i a l s t a t u s back home: I was a c e l e b r i t y i n my home because I was t h e only k i d i n my s c h o o l t h a t was allowed t o take a month o f f and go away without anything t e r r i b l e happening t o them i n c l a s s . . . Because I was from a s m a l l town t h e r e was a l i t t l e b i t o f "she's gone to t h e c i t y , she's gone t o Vancouver f o r a whole month. How does she r a t e ? " . . . They were k i n d o f j e a l o u s . So i n a way t h e whole G.F. Strong t h i n g s o r t o f gave me a r e a l c e l e b r i t y s t a t u s t h a t I was badly i n need o f a t t h a t time o f my l i f e . A f t e r h i g h s c h o o l Robin was f o r c e d t o a t t e n d a community c o l l e g e a t f i r s t ,  r a t h e r than a u n i v e r s i t y ,  because her long absences from s c h o o l had prevented h e r from keeping up with h e r French.  She g o t good marks  t h e r e , but h e r s e l f - i m a g e problems v i s i t e d h e r once again, and she f e l t s o c i a l l y i l l - e q u i p p e d t o be i n t h e c o l l e g e world.  Nevertheless,  she continued,  taking  s o c i a l s c i e n c e courses w i t h t h e hope o f t r a n s f e r r i n g t o a u n i v e r s i t y s o c i a l work program.  When she d i d  t r a n s f e r t o a u n i v e r s i t y , she n o t o n l y f e l t  socially  152  i l l - a t - e a s e , she f e l t  a c a d e m i c a l l y unprepared  as w e l l .  She had problems with roommates and t r o u b l e g e t t i n g the courses she wanted, so when she was  o f f e r e d a job back  i n her hometown she q u i t s c h o o l and r e t u r n e d home. So began a new  phase i n Robin's l i f e .  For the  next two years she had a " r e a l l y good j o b " t u t o r i n g F i r s t Nations c h i l d r e n .  She was  the f i r s t  non-native  person t o be g i v e n such a p o s i t i o n and she f e l t privileged.  very  She l e a r n e d much about the n a t i v e c u l t u r e  d u r i n g t h i s time, and s a t i s f i e d h e r s e l f t h a t t h i s  was  l e a r n i n g r e l e v a n t t o her u l t i m a t e g o a l of becoming a s o c i a l worker. Meanwhile she had taken up r e s i d e n c e w i t h her first  real boyfriend.  At f i r s t  her l i f e w i t h him  happy but, as time passed, t r o u b l e s overtook relationship.  was  their  He went through a prolonged p e r i o d of  unemployment, and he and Robin were c o n s t a n t l y harassed and manipulated by h i s former w i f e .  She was  laid off  from her job and c o u l d n ' t look f o r work because a w a i t i n g more s u r g e r y .  she  was  When he e v e n t u a l l y found a job  he had t o commute t o another town t o perform work which was  o n l y menial.  153 Towards the end of t h e i r r e l a t i o n s h i p , they moved to  the basement of Robin's p a r e n t ' s home, l a r g e l y  because she " f e l t s a f e r t h e r e . "  "I t h i n k I r e a l l y knew  i n the back of my mind," she says, " t h a t t h i n g s were not  gonna go w e l l w i t h us, and I wanted t o be s o r t of  safe."  S i x y e a r s i n t o t h e i r r e l a t i o n s h i p , and  two  weeks a f t e r Robin had completed a 6-month f u l l - t i m e computer course, he l e f t her a note and she never  saw  him a g a i n . For  the f i r s t year o r so a f t e r the break-up  Robin was d e v a s t a t e d : My worst f e a r s were r e a l i z e d . . . There's always been a b i t of a n x i e t y where I'm concerned where e i t h e r I would be abandoned because I'm a r t h r i t i c or I would have t o d e a l w i t h something so d e v a s t a t i n g t o me t h a t I c o u l d n ' t f i g h t any longer, t h a t my s p i r i t would j u s t abandon me... I thought i t was going t o happen when he l e f t me because I had r e a l l y been abandoned by someone. For the f i r s t time i n my l i f e I had r e a l l y been abandoned by someone I thought I l o v e d . Her a r t h r i t i s had p r o g r e s s e d c o n s i d e r a b l y over the years t h a t they had been t o g e t h e r , and l o o k i n g  back  Robin came t o b e l i e v e t h a t t h e i r bad r e l a t i o n s h i p might have " k i c k - s t a r t e d " her "dormant" a r t h r i t i s . Then came another p e r i o d of s u r g e r i e s and r e h a b i l i t a t i o n ; she had a second knee replacement and coerced her surgeon i n t o f u s i n g both a n k l e s a t once, a  154 p r a c t i c e t h a t i s extremely uncommon because i t l e a v e s one completely unable t o weight bear f o r an extended p e r i o d o f time.  She managed t o g e t an i n t e r v i e w w i t h a  housing co-op which she attended i n a wheelchair w i t h c a s t s on both l e g s ; " l e t ' s say I d i d n ' t have t o work hard t o g e t t h e p l a c e , " she says.  W i t h i n a couple o f  months she began a s e r i e s o f temporary  jobs, and when  those f i n i s h e d , she was o f f e r e d two jobs i n one week, both good jobs w i t h major c o r p o r a t i o n s .  She chose t h e  more a t t r a c t i v e o f t h e two and she s t i l l works i n t h i s job. In get  the p a s t f i v e years o r so s i n c e she s t a r t e d t o  her l i f e t o g e t h e r , Robin has "come back t o  spirituality."  She a t t e n d s church r e g u l a r l y and i s a  s t r o n g b e l i e v e r i n the i d e a o f f r e e w i l l .  She does n o t  t h i n k i n terms o f p r e d e s t i n a t i o n , and t h e r e f o r e she t h i n k s o f her a r t h r i t i s as t h e "the l u c k o f t h e draw." Through the p a t i e n t e d u c a t i o n she has r e c e i v e d she has come t o t h i n k o f her a r t h r i t i s as t h e product o f a f a u l t i n the immune system,  possibly genetically-based.  Though moments o f d e s p e r a t i o n s t i l l  overtake her  sometimes, o v e r a l l Robin has gained some peace i n her life.  She has l e t her g o a l o f becoming a s o c i a l worker  155 s l i p away because she i s f a c e d with the more immediate concerns o f a woman s u r v i v i n g alone.  Instead she has  t o be content w i t h s m a l l e r t h i n g s , g i v i n g t o a homeless person on t h e s t r e e t , f o r example, o r c o n t r i b u t i n g t o the e f f o r t s o f her church.  She t r i e s t o focus on t h e  p o s i t i v e , and says t h a t i f she d i d n ' t have  arthritis  she "wouldn't have met some v e r y i n t e r e s t i n g  people."  156 Chapter V: The development  o f c a u s a l models of a r t h r i t i s : The g e n e r a l s t o r y  Overview In what has been one of the most complete  studies  of the c a u s a l a t t r i b u t i o n s of a r t h r i t i s p a t i e n t s t o date, A f f l e c k , e t a l (1987) summarized the a t t r i b u t i o n s i n t a b l e s w i t h percentages g i v e n f o r each o f s e v e r a l c a t e g o r i e s of i n v e s t i g a t o r - p r e d i c t e d and defined a t t r i b u t i o n s .  investigator-  Such an approach g i v e s no  c o n s i d e r a t i o n t o the development  o f e x p l a n a t o r y models  over time, t o the l i f e events t h a t c o i n c i d e w i t h the i n c o r p o r a t i o n of c a u s a l elements i n t o the model, nor t o the complexity of the models themselves.  Though the  reader o f such a study would n o t i c e , i f he o r she added up the percentages g i v e n f o r each a t t r i b u t i o n ,  that  some people were c i t i n g more than one cause, t h e r e i s no d i s c u s s i o n o f the i n t e r a c t i o n of c a u s a l v a r i a b l e s i n people's c a u s a l models.  F u r t h e r , by c o l l e c t i n g data  through q u e s t i o n n a i r e s on a one-time b a s i s , they have r e s t r i c t e d the range of responses they might get and have p r e c l u d e d the p o s s i b i l i t y f o r the t h o u g h t f u l r e f l e c t i o n of t h e i r  participants.  157 The present study, because i t employed open-ended i n t e r v i e w s separated by c o n s i d e r a b l e p e r i o d s of time, gave the c o - i n v e s t i g a t o r s the o p p o r t u n i t y t o p r e s e n t t h e i r own  a t t r i b u t i o n s , without having t o i n t e r p r e t  f i t themselves  i n t o c a t e g o r i e s presented t o them.  and It  a l s o gave them the time t o remember c a u s a l i d e a s t h a t were sometimes t e e t e r i n g on the edge of c o n s c i o u s awareness, a f f e c t i n g the way yet  never being expressed  they l i v e d t h e i r  lives,  verbally.  The r e s u l t s of t h i s study i n d i c a t e t h a t people with a r t h r i t i s have v e r y complex c a u s a l models, t h a t expand over the course of the i l l n e s s , i n c o r p o r a t i n g more and more d i v e r s e elements.  F u r t h e r , the models  tend t o develop i n a f a i r l y t y p i c a l way,  w i t h a focus  i n the beginning on p h y s i c a l causes, moving toward the i n c o r p o r a t i o n of s t r e s s as a c a u s a l c o n t r i b u t o r , and f i n a l l y towards the e x i s t e n t i a l , the cosmic e x p l a n a t i o n t h a t addresses the q u e s t i o n "why to  me?".  I t i s important  note t h a t these are not stage models; the  first  c a u s a l element i s not abandoned as the second c a u s a l element i s embraced, f o r example.  Rather, the  second  element sums t o the f i r s t and i s e q u a l l y important i n producing symptoms.  158 The  i d e a t h a t s e v e r a l f a c t o r s must be present a t  once i n order t o t r i g g e r t h e onset of a r t h r i t i s was e x p l i c i t l y expressed by s e v e r a l o f the c o investigators.  J e s s ' s mother, f o r example, s a i d t o her  daughter "maybe you always had t h i s but i t j u s t never t r i g g e r e d u n t i l you were 2 0 . " j u s t s o r t o f came t o g e t h e r "  Sophie says  "everything  t o produce a r t h r i t i s .  Tamara has a s i m i l a r i d e a , though more e l a b o r a t e , when she  says: A,B,C, and D,E,F must come t o g e t h e r b e f o r e i t i s activated. So what c o n d i t i o n s a c t i v a t e i t ? I s i t the f a c t t h a t I was working up north i n t h i s extreme c o l d ? Was i t t h e f a c t t h a t I had spent a l a r g e p a r t o f my l i f e on an i s l a n d i n t h e A t l a n t i c Ocean, c o l d A t l a n t i c c u r r e n t , warm c u r r e n t , fog? Did I have e x t r a s t r e s s ? And the combination o f maybe f i v e f a c t o r s t h a t j u s t made i t .  T h i s b e l i e f t h a t m u l t i p l e f a c t o r s must be present i n order t o t r i g g e r t h e a r t h r i t i s i s not present  i n the  beginning,, and o n l y develops over time. Though s e v e r a l c a u s a l f a c t o r s make up a c a u s a l model, t h e prominence o f d i f f e r e n t f a c t o r s v a r i e s over the course o f t h e i l l n e s s .  F o r example, a person might  h o l d t h e b e l i e f t h a t a r t h r i t i s has a g e n e t i c b a s i s and t h a t an environmental t r i g g e r i s necessary t o produce symptoms, but may be focused,  a t some p a r t i c u l a r time,  on t h e e x i s t e n t i a l "cause," say, t h e punishment f o r  159 wrongdoing. and  Though the p h y s i c a l , the  psychological,  the e x i s t e n t i a l might seem t o be very  planes of e x p l a n a t i o n ,  people seem t o move q u i t e  between them, pausing on the one s a l i e n t t o them a t any  different  given  t h a t seems most  time.  In g e n e r a l , the development of my  co-  i n v e s t i g a t o r s ' c a u s a l models proceeded from p h y s i c a l through the p s y c h o l o g i c a l t o the The  expansion of the c a u s a l models was  the inadequacy of simple e x p l a n a t i o n s , accumulation of i n f o r m a t i o n with a r t h r i t i s and o b s e r v i n g  freely  the metaphysical.  necessitated and by  by  the  t h a t grew out of l i v i n g the kinds of t h i n g s  that  i n f l u e n c e d i t s course; i n a sense, the  co-investigators  became s e l f - s t y l e d medical d e t e c t i v e s ,  observing  v a r i o u s environmental and p s y c h o l o g i c a l f a c t o r s n o t i n g the i n f l u e n c e these f a c t o r s had arthritis.  The  on  expansion of the models was  and  their also  n e c e s s i t a t e d by the quest f o r meaning, f o r an understanding of the p l a c e of a r t h r i t i s i n the u n i v e r s a l order; t h i s was  f o r a l l but one  as important a search  o r i e n t e d search  of my  co-investigators  as the more m e d i c a l l y -  f o r p h y s i c a l and  environmental causes.  160 Though t h e r e i s a p a t t e r n t o t h e way people's c a u s a l t h e o r i e s develop, t h e r e i s much d i v e r s i t y w i t h i n each o f t h e broad themes.  The g e n e r a l s t o r y t h a t  f o l l o w s should g i v e a f e e l f o r both t h e s i m i l a r i t i e s and d i f f e r e n c e s a c r o s s t h e s t o r i e s o f my c o investigators . In t h e b e g i n n i n g : A focus on t h e p h y s i c a l A l l o f t h e c o - i n v e s t i g a t o r s i n t h i s study looked f i r s t t o p h y s i c a l causes t o e x p l a i n t h e i r symptoms. There may be s e v e r a l reasons f o r t h i s .  First, i t i s  customary t o look f o r p h y s i c a l causes when we a r e i n j u r e d o r i n p a i n ; when we burn o u r s e l v e s we blame i t on something  hot t h a t has touched us, when we scrape  o u r s e l v e s we blame i t on f r i c t i o n .  When we break a  bone we do not look t o p s y c h o l o g i c a l o r e x i s t e n t i a l explanations.  Before people a r e diagnosed w i t h  a r t h r i t i s they n a t u r a l l y engage i n t h e k i n d o f a t t r i b u t i o n a l t h i n k i n g t h a t they would f o r any o t h e r kind of hurt.  Even a f t e r they a r e diagnosed, they may  not know much about inflammatory a r t h r i t i s ,  i t s nature  and i t s p r o g n o s i s , and so they c o n t i n u e t o h o l d a v e r y simple view as t o i t s cause.  C o m p l i c a t i n g matters  f u r t h e r i s t h e f a c t t h a t when many people t h i n k o f  161 a r t h r i t i s they t h i n k o f o s t e o - a r t h r i t i s , t h e " o l d age" form o f a r t h r i t i s t h a t r e s u l t s from mechanical wearand-tear; t h i s may be why s e v e r a l o f t h e c o investigators a t t r i b u t e d t h e i r a r t h r i t i s , i n the b e g i n n i n g , t o overuse, i n j u r y , o r t o working t o o hard. A second reason t h a t people may look f i r s t o f a l l t o p h y s i c a l causes i s t h a t t h e medical p r o f e s s i o n encourages  people t o do s o .  During t h e d i a g n o s t i c  phase people may be asked q u e s t i o n s such as " d i d you i n j u r e y o u r s e l f ? " , o r "do you have a r t h r i t i s i n your family?".  Further,  t h e d i a g n o s t i c process i s i t s e l f  i n t e n s e l y p h y s i c a l , f o c u s i n g on p h y s i c a l examination and l a b o r a t o r y blood t e s t s . A t h i r d reason t h a t people may look f i r s t t o p h y s i c a l causes i s t h a t p h y s i c a l causes o f t e n o f f e r t h e hope o f easy p h y s i c a l s o l u t i o n s ; i f one touches something  t h a t i s t o o h o t one need simply remove  o n e s e l f t o a l l e v i a t e t h e problem;  i f one scrapes  o n e s e l f , one j u s t keeps t h e wound c l e a n and w a i t s f o r i t t o h e a l ; i f a bone i s broken one need simply have i t set  and wait f o r i t t o mend.  F o r many people t h e  r e a l i t y o f an i n c u r a b l e , p r o g r e s s i v e l y d i s e a s e i s t o o much t o countenance  worsening  i n the beginning.  162 T h i s reason may h o l d f o r those c o - i n v e s t i g a t o r s who had the b e l i e f t h a t t h e i r symptoms were caused by i n j u r y o r overuse. Within  t h e theme o f p h y s i c a l causes f o u r  distinct  sub-themes emerged from t h e i n t e r v i e w s : E x t e r n a l causes.  A v a r i e t y of external  causes  were c i t e d by t h e c o - i n v e s t i g a t o r s , many having t o do with i n f e c t i o u s agents.  Two c o - i n v e s t i g a t o r s  pointed  s p e c i f i c a l l y t o c e r t a i n types o f v i r u s e s , and one t o the bacterium t h a t causes s t r e p t h r o a t .  Vaccinations  f o r t u b e r c u l o s i s , h e p a t i t i s B, and d i p h t h e r i a - p o l i o tetanus were blamed by t h r e e d i f f e r e n t c o investigators . Two c o - i n v e s t i g a t o r s a t t r i b u t e d t h e i r a r t h r i t i s t o p h y s i c a l hardship,  C a r o l i n e t o p a i n f u l medical t e s t i n g ,  and Gwen t o p h y s i c a l abuse.  Another woman b e l i e v e d  r e p o r t s from t h e popular press t h a t a r t h r i t i s i s caused by t h e amalgam i n t o o t h Constitutional. pointed  fillings.  Four o f t h e women  interviewed  s p e c i f i c a l l y t o h e r e d i t y as a c a u s a l f a c t o r i n  the development o f a r t h r i t i s , Marlene and Madeleine because they knew o f people i n t h e i r f a m i l y who had a r t h r i t i s , and C a r o l i n e and Tamara because they had  163 heard or read t h a t a r t h r i t i s has g e n e t i c o r i g i n s . o t h e r women s p e c u l a t e t h a t g e n e t i c s may  Two  play a role,  but are unsure because they know of no one i n t h e i r f a m i l i e s with a r t h r i t i s . Another t h r e e of the c o - i n v e s t i g a t o r s b e l i e v e t h a t a r t h r i t i s i s " i n your system", but cannot be more s p e c i f i c about what they mean by t h i s . The way  you a r e .  Two  o f the c o - i n v e s t i g a t o r s  blamed t r a n s i e n t p h y s i c a l s t a t e s f o r the onset of t h e i r a r t h r i t i s ; Marlene thought she had developed  arthritis  because  she  she was  overweight, and Gwen because  was  menopausal. What you are d o i n g .  F i v e of the women i n t e r v i e w e d  s a i d t h a t they had been "overdoing i t , " working hard or engaging  i n r e p e t i t i v e or i n j u r i o u s  around the time t h a t t h e i r a r t h r i t i s began. Lorna s a i d t h a t they had been working  too  activities Tamara and  i n damp or c o l d  environments. For Lorna and Diana, a r t h r i t i s f o l l o w e d v e r y c l o s e l y a f t e r c h i l d b i r t h , and they p o i n t t o t h i s as the p r e c i p i t a t i n g event. was  Of these two,  one a l s o s a i d i t  g e n e t i c , and the o t h e r a l s o s a i d i t was  " i n your  164 system," so even a t the p h y s i c a l l e v e l m u l t i f a c t o r i a l hypotheses can a r i s e . Though t h e p h y s i c a l e x p l a n a t i o n s  are a t t r a c t i v e  because o f t h e i r s i m p l i c i t y , and because o f t h e i r promise o f " f i x a b i l i t y , " they a r e l a c k i n g i n some respects.  If arthritis  i s c o n s t i t u t i o n a l , why does i t  w a i t many y e a r s b e f o r e i t becomes m a n i f e s t , and what t r i g g e r s the symptoms?  If arthritis  i s caused by  "overdoing i t , " why do t h e symptoms not subside when people r e s t ?  I f a r t h r i t i s i s caused by a common  i n f e c t i o u s agent, why does not everyone who becomes i n f e c t e d develop a r t h r i t i s ?  These kinds o f q u e s t i o n s  i l l u s t r a t e t h e incompleteness o f p u r e l y explanations  physical  f o r a r t h r i t i s , and the reason why people  f e e l compelled t o expand t h e i r c a u s a l  theories.  In t h e middle: The i n c o r p o r a t i o n o f s t r e s s i n t o t h e c a u s a l model There i s a common assumption i n our c u l t u r e  that  t h e r e e x i s t s an a s s o c i a t i o n between s t r e s s and i l l n e s s ; when we c a t c h a c o l d we might say i t i s because we a r e "run down," f o r example. strong  T h i s assumption i s q u i t e  i n t h e c u l t u r e o f people with a r t h r i t i s , and  t h e r e may be s e v e r a l reasons f o r t h i s .  165 F i r s t , t h e incompleteness o f a p u r e l y p h y s i c a l c a u s a l model leads people t o look f o r other f a c t o r s , p a r t i c u l a r l y f a c t o r s t h a t e x p l a i n why a r t h r i t i s symptoms present Retrospection,  themselves a t a p a r t i c u l a r time.  i n most cases,  i d e n t i f i c a t i o n of excessive  leads t o t h e  p s y c h o l o g i c a l s t r e s s around  the time o f onset. For nine o f t h e c o - i n v e s t i g a t o r s , t h e s t r e s s was c h r o n i c i n nature.  M a r i t a l and f a m i l y d y s f u n c t i o n was  h e l d r e s p o n s i b l e by f o u r o f t h e women, and Madeleine, Marlene, and Tamara p o i n t e d  to difficult  family  situations involving, respectively, a sick child, s i n g l e parenthood, and r e s p o n s i b i l i t y o v e r l o a d . and J e s s i d e n t i f i e d work s t r e s s as c a u s a l and Lorna, a F i r s t Nations woman, looked  Stacey  contributors, t o the s t r a i n  experienced by n a t i v e people who have l o s t  their  c u l t u r e and t h e i r i d e n t i t y . Three o f t h e c o - i n v e s t i g a t o r s c i t e d  specific  s t r e s s f u l events t h a t c o i n c i d e d w i t h t h e onset o f t h e i r arthritis.  Diana gave b i r t h t o a c h i l d though she  l o a t h e d t h e thought o f motherhood, Stacey's f a t h e r d i e d a f t e r a long i l l n e s s , and Madeleine's c h i l d was diagnosed with a f a t a l  disease.  166 A second reason t h a t people look t o s t r e s s i s the prevalent  b e l i e f i n the a r t h r i t i s c u l t u r e t h a t s t r e s s  i s a causal f a c t o r .  When people hear suggestions from  medical personnel t h a t s t r e s s might have t r i g g e r e d t h e i r a r t h r i t i s , as s e v e r a l of the  co-investigators  have, they are prompted t o examine the  psychological  c l i m a t e i n which they were l i v i n g around the time of onset.  F u r t h e r , when they hear from other people w i t h  a r t h r i t i s t h a t they had  had  a l o t of s t r e s s around the  time of onset, the b e l i e f i n the power of s t r e s s t o trigger arthritis  i s strengthened.  F i n a l l y , as mentioned, people w i t h a r t h r i t i s  often  become a s t u t e o b s e r v e r s of those t h i n g s t h a t a f f e c t  the  s t a t e of t h e i r a r t h r i t i s , t h i n g s t h a t cause t h e i r a r t h r i t i s t o q u i e t e n down, and f l a r e up.  t h i n g s t h a t cause i t t o  At l e a s t s i x of the c o - i n v e s t i g a t o r s i n t h i s  study b e l i e v e t h a t emotional s t r e s s exacerbates symptoms of t h e i r a r t h r i t i s .  the  I t i s a r a t h e r small  leap  of l o g i c t o t h i n k t h a t i f s t r e s s can cause a r t h r i t i s f l a r e up,  then perhaps i t can t r i g g e r a r t h r i t i s  f i r s t p l a c e i n those who  are v u l n e r a b l e .  The  i n the  causal  models o u t l i n e d i n Appendix D show t h a t o f t e n s t r e s s w i l l move from the column l a b e l l e d  "influences  to  167  i n c o r p o r a t e d i n t o the model" t o t h e column l a b e l l e d "causes i n c o r p o r a t e d i n t o t h e model" as time passes. Towards the end: A c o n s i d e r a t i o n o f the m e t a p h y s i c a l Though t h e i n c o r p o r a t i o n o f s t r e s s i n t o t h e c a u s a l model does much f o r people i n terms o f e l u c i d a t i n g t h e mechanism by which they developed a r t h r i t i s , t h e q u e s t i o n "why me?" s t i l l  lingers.  An understanding o f  the d i s e a s e mechanism does n o t h i n g t o g i v e meaning t o the experience o f a r t h r i t i s , and does n o t h i n g t o address t h e q u e s t i o n o f why such a d e v a s t a t i n g d i s e a s e would be v i s i t e d so u n f a i r l y upon someone.  So people  move beyond the p h y s i c a l and t h e p s y c h o l o g i c a l t o look f o r the u n i v e r s a l o r cosmic reasons f o r t h e i r d i s e a s e . A l l o f the c o - i n v e s t i g a t o r s have a t some time i n the course o f t h e i r i l l n e s s concerned themselves the q u e s t i o n "why me?"  with  Only two o f them, J e s s and  Sophie, got annoyed a t themselves f o r a s k i n g t h i s question.  The r e s t searched o r c o n t i n u e t o s e a r c h i n  e a r n e s t f o r an answer t o t h i s q u e s t i o n . Four o f the women a t t r i b u t e d t h e i r a r t h r i t i s t o chance, although they had s l i g h t l y d i f f e r e n t ways o f saying i t .  Sophie used t h e word "chance" when she  annoyedly d i s m i s s e d the n o t i o n t h a t a powerful b e i n g  168 might be c o n s p i r i n g t o damn h e r with punishment o r b l e s s h e r w i t h a h i g h e r purpose.  Marlene and Robin put  t h e i r f a t e s down t o "bad l u c k " and " l u c k " r e s p e c t i v e l y , because they c o u l d t h i n k o f no other  explanation.  Robin, i n p a r t i c u l a r , denounced t h e i d e a o f p r e d e s t i n a t i o n as i t i s c o n t r a r y t o h e r f a i t h .  Diana  described  her a r t h r i t i s as a " q u i r k o f f a t e , " but i s  profoundly  u n s a t i s f i e d w i t h t h i s answer and says t h a t  she wants t o ask some s e r i o u s questions  o f her maker.  So although these f o u r c o - i n v e s t i g a t o r s a l l c i t e d chance as t h e "cosmic" reason f o r t h e i r a r t h r i t i s , did  they  so w i t h d i f f e r e n t a t t i t u d e s . Three o f t h e c o - i n v e s t i g a t o r s thought t h a t  their  a r t h r i t i s was a punishment f o r wrong-doing, and a fourth considered  the p o s s i b i l i t y .  Marilyn's  thinking  was simple and c h i l d - l i k e — s h e thought she was being punished f o r f i g h t i n g w i t h h e r s i s t e r . end  On t h e other  o f t h e spectrum, Tamara embraced a r e l i g i o n  that  teaches t h a t t h e s u f f e r i n g o f t h i s l i f e i s t h e consequence o f wrong-doing i n a past l i f e ; h e r explanations  a r e d e t a i l e d and e l a b o r a t e — t h i s i s no  p a s s i n g n o t i o n f o r her.  In f a c t she has b u i l t h e r l i f e  around t h e b e l i e f t h a t she has t o bear t h e s u f f e r i n g i n  169  this l i f e  i n order t o be f r e e d from i t i n t h e next.  Tamara's s t o r y i s undeniably t h e most dramatic example of t h e k i n d o f s h i f t i n world view t h a t can occur w i t h a disabling illness. arthritis  Caroline a l s o believes that her  i s punishment f o r t h e s i n s o f a past  but she has not developed a p a r a l l e l  life,  system o f l o g i c  the way Tamara has; i n s t e a d t h e simple  explanation  suffices. Three o f t h e c o - i n v e s t i g a t o r s reframed t h e experience o f a r t h r i t i s as something t h a t was purposeful  o r would u l t i m a t e l y l e a d t o good.  believes that "everything  Lorna  has a purpose," even i f we do  not know what t h a t purpose i s ; t h e n a t i v e e l d e r s have persuaded her t h a t t h e purpose f o r her l i f e w i l l be r e v e a l e d t o h e r as she ages.  Though she s t r u g g l e s w i t h  the f e e l i n g t h a t a r t h r i t i s has "kept [her] down," d i s a l l o w i n g t h e f u l f i l m e n t o f h e r l i f e ' s g o a l s , she t r i e s t o h o l d t o t h e f a i t h t h a t h e r t r u e purpose i n l i f e w i l l be f u l f i l l e d .  Gwen, who has endured so much  s u f f e r i n g even beyond h e r a r t h r i t i s , has always b e l i e v e d i n t h e back o f h e r mind t h a t "someone i s watching over [ h e r ] . " years o f t e r r i b l e  T h i s b e l i e f saw her through  abuse, and continues  t o g i v e h e r hope  170 now;  i n some ways i t i s a k i n t o the n o t i o n t h a t  never g i v e s us more than we can bear. d'etre  God  Stacey's  raison  has always been her n u r s i n g , and though she  s t r u g g l e s w i t h d e p r e s s i o n and d e s p a i r , she i s kept a f l o a t by the b e l i e f t h a t she has "something  to learn,"  t h a t her experience with a r t h r i t i s w i l l make her a b e t t e r nurse.  One might argue t h a t the f a c t t h a t  can l e a r n something  from the experience of  one  arthritis,  f o r example, or the n o t i o n t h a t the achievement of a h i g h e r purpose w i l l be f a c i l i t a t e d arthritis,  o r prompted by  are not causes of a r t h r i t i s ,  consequences.  but r a t h e r are  But these women, s t r u g g l i n g t o make  sense of t h e i r s u f f e r i n g , want i t t o be otherwise; they want t o t h i n k t h a t the u n i v e r s e i s ordered i n such a way  t h a t t h e i r a r t h r i t i s w i l l l e a d t o u l t i m a t e good. Two  of the c o - i n v e s t i g a t o r s have no answer t o the  q u e s t i o n "why  me?",  although, a g a i n , they  feel  d i f f e r e n t l y about the absence of an answer. i s d e a l i n g not o n l y w i t h the f r e s h r e a l i t y  Madeleine of her  a r t h r i t i s , but w i t h the g r i e f of l o s i n g her young daughter  as w e l l .  She  i s extremely angry a t the hand  t h a t has been d e a l t her and i s stunned by the of i t a l l .  injustice  She has no answer and she wants one.  Jess,  171 on the o t h e r hand, says she f e e l s q u i t e comfortable without an answer; i n f a c t she c l a i m s t h a t t h e r e simply i s no answer and t h a t the s e a r c h f o r one i s not o n l y u s e l e s s , i t d i v e r t s a t t e n t i o n away from  influences,  such as s t r e s s and foods, t h a t are under one's c o n t r o l . I n f l u e n c e s i n c o r p o r a t e d i n t o the models As noted a t the b e g i n n i n g of t h i s paper,  people  have a powerful need t o c o n t r o l , or a t l e a s t a n t i c i p a t e , the occurrence of n e g a t i v e events.  A l l of  the c o - i n v e s t i g a t o r s i n t h i s study r e a l i z e t h a t the c u r r e n t s t a t e of medical knowledge does not h o l d a cure f o r t h e i r a r t h r i t i s , and none of them are w a i t i n g f o r a miracle.  Instead, they concern themselves w i t h f a c t o r s  t h a t are a t l e a s t p a r t l y under t h e i r c o n t r o l , t h i n g s t h a t make t h e i r a r t h r i t i s b e t t e r or worse. contains a f u l l  Appendix F  l i s t i n g of the i n f l u e n c e s c i t e d by the  co-investigators. Diana, Marlene, reprieve" illnesses.  and Sophie a l l had a " d e l u s i o n of  ( F r a n k l , 1984,  p. 28) a t some p o i n t i n t h e i r  Diana and Marlene had h e l d f a s t t o the i d e a  t h a t the recency of t h e i r d i a g n o s i s would spare them the degree of d i s a b i l i t y experienced by people whose a r t h r i t i s began b e f o r e e f f e c t i v e treatment  was  172 available.  Diana, i n p a r t i c u l a r , has been s t r i p p e d o f  t h i s d e l u s i o n , and now says t h a t e v e n t u a l l y "you r e a l i z e you don't have as much c o n t r o l as you t h i n k you do."  Sophie b e l i e v e d t h a t t h e f a c t t h a t she r e c e i v e d  treatment e a r l y i n t h e course o f her i l l n e s s meant t h a t severe d i s a b i l i t y would be f o r e s t a l l e d . S u r p r i s i n g l y few o f t h e c o - i n v e s t i g a t o r s  cited  medical treatment as something t h a t i n f l u e n c e d t h e course o f t h e i r i l l n e s s .  T h i s may be because o f t h e  way I posed my q u e s t i o n s ,  o r i t may be because these  women have a r t h r i t i s severe enough t o warrant and  lengthy,  o f t e n repeated, h o s p i t a l i z a t i o n s , and t h e r e f o r e a r e  a s e l e c t group who f a i l e d t o respond adequately t o medical treatment. I t i s a l s o s u r p r i s i n g t h a t o n l y two o f t h e women b e l i e v e t h a t environmental c o n d i t i o n s i n f l u e n c e t h e state of t h e i r a r t h r i t i s , given the prevalence of t h i s b e l i e f i n the general  population.  Marlene was non-  s p e c i f i c when she s a i d t h a t t h e weather i n f l u e n c e d h e r , but Sophie was more s p e c i f i c , s a y i n g t h a t heat and changes i n b a r o m e t r i c pressure  worsened h e r a r t h r i t i s .  A few o f t h e i n f l u e n c e s c i t e d , such as t h e food one  eats o r one's l e v e l o f p h y s i c a l e x e r t i o n , a r e  173 simple and c l e a r l y w i t h i n one's c o n t r o l . pregnancy a r e t r a n s i e n t , and o t h e r s  are e a s i l y  addressed, such as t h e l a c k o f estrogen, in a tooth. appropriate  Some, such as  and i n f e c t i o n  By p i n p o i n t i n g these i n f l u e n c e s and t a k i n g a c t i o n , t h e women g a i n a sense o f c o n t r o l  over t h e i r d i s e a s e Psychological  activity. i n f l u e n c e s were named by almost a l l  of t h e c o - i n v e s t i g a t o r s .  S i x women s a i d t h a t an  i n c r e a s e i n s t r e s s produces a c o r r e s p o n d i n g i n c r e a s e i n disease  activity.  explanation  T h i s may be a somewhat s a t i s f y i n g  because p e r i o d s o f e x c e s s i v e  stress are  o f t e n t r a n s i e n t , and because people e x p e r i e n c i n g  stress  can o f t e n do something about t h e i r s t r e s s , by d e a l i n g w i t h i t s source, by removing o n e s e l f  from t h e source,  or by changing t h e way one sees t h e s i t u a t i o n , f o r example. The  i n f l u e n c e of s t r e s s i s o f t e n mediated, i n t h e  minds o f t h e c o - i n v e s t i g a t o r s , by p e r s o n a l i t y o r dispositional variables.  An i d e a o f t e n mentioned i s  t h a t one has t o have "willpower," o r a " f i g h t i n g s p i r i t , " o r " p o s i t i v e t h i n k i n g " i n order t o d e a l e f f e c t i v e l y with a r t h r i t i s .  I n t e r e s t i n g l y , when people  speak i n these terms, they a r e not speaking o f t h e  174 importance o f these a t t r i b u t e s when coping e m o t i o n a l l y with t h e i r a r t h r i t i s , they are s a y i n g t h a t these a t t r i b u t e s a c t u a l l y i n f l u e n c e the p h y s i c a l course o f one's d i s e a s e . The nature o f the g e n e r a l s t o r y The g e n e r a l s t o r y i s one o f t h e expansion  o f the  c a u s a l model; i t moves s i m u l t a n e o u s l y toward completeness and toward the r e c o v e r y o f meaning.  As i t  moves from p u r e l y p h y s i c a l e x p l a n a t i o n s t o those t h a t i n c o r p o r a t e the p s y c h o l o g i c a l , i t moves toward a more complete e x p l a n a t i o n o f t h e e t i o l o g y o f the d i s e a s e itself.  As i t moves from the p s y c h o l o g i c a l t o t h e  metaphysical,  i t moves toward an understanding  place of a r t h r i t i s  o f the  i n t h e cosmic o r d e r .  Many o f the women, upon h e a r i n g my i n t r o d u c t o r y request t h a t they t e l l me t h e s t o r y o f t h e i r as i f i t had a beginning, a middle,  arthritis  and an end,  r e c o i l e d a t the i d e a t h a t they might be ready t o t e l l the end o f t h e i r s t o r i e s . meaning i s ongoing,  For many, the quest f o r  and t h e r e f o r e the n o o l o g i c a l  a t t r i b u t i o n s o f f e r e d t o me were o n l y t e n t a t i v e , sometimes u n s a t i s f a c t o r y , e x p l a n a t i o n s .  For some, t h e  d i r e c t i o n i s toward r e c o n s t r u i n g t h e event o f a r t h r i t i s  175 to  make i t a p o s i t i v e one.  For o t h e r s the d i r e c t i o n i s  toward r e c o n s t r u c t i n g one's world view, t o s e e i n g t h e world  as a p l a c e i n which punishment f o l l o w s o r d e r l y  from wrong-doing, f o r example, o r t o s e e i n g t h e world as a p l a c e where one's " f i g h t i n g s p i r i t " a c t u a l l y has an i n f l u e n c e over t h e course o f nature. In some cases, one's sense o f purpose d e r i v e s d i r e c t l y from one's a l t e r e d world view; Tamara, f o r example, l i v e s her l i f e a c c o r d i n g t o the c a u s a l f o r c e s she f e e l s a r e r e s p o n s i b l e f o r b r i n g i n g on her arthritis.  In other cases, one l i v e s one's l i f e  with  the f a i t h t h a t one's a r t h r i t i s i s i n t i m a t e l y t i e d t o some h i g h e r purpose, even i f t h a t purpose i s as y e t unknown.  For o t h e r s , a r t h r i t i s has taken away t h e  s t r i v i n g f o r some grand g o a l , and has encouraged people to  focus on and enjoy t h e simple t h i n g s o f l i f e , as  Gwen says, a book, a b i r d a t the window, and "a good cup o f c o f f e e . "  176 Chapter V I : D i s c u s s i o n The r e s u l t s o f t h i s study go f a r beyond what I expected a t t h e o u t s e t .  When I f i r s t c o n s i d e r e d doing  r e s e a r c h i n t h e area o f a t t r i b u t i o n s , I wanted t o see whether t h e r e i s a r e l a t i o n s h i p between t h e k i n d s o f n o o l o g i c a l a t t r i b u t i o n s people make and t h e way t h a t they cope w i t h t h e i r a r t h r i t i s .  Yet simply d e t e r m i n i n g  what t h e a t t r i b u t i o n s a r e i s i n s u f f i c i e n t i n terms o f understanding t h e meaning t h a t people a t t a c h t o them. A s i n g l e a t t r i b u t i o n , such as punishment f o r wrongdoing, can mean v a s t l y d i f f e r e n t t h i n g s t o d i f f e r e n t people, as t h i s study has shown. By f o c u s i n g s o l e l y on t h e answers people to  generate  t h e q u e s t i o n "why me?", I would have missed  important c l u e s i n t h e i r models o f how t h e world operates. of  I would have missed, f o r example, t h e b e l i e f  many people i n t h e power o f t h e i r own w i l l p o w e r t o  i n f l u e n c e t h e f o r c e s o f nature; I would have missed t h e s o r t i n g out o f what f a c t o r s people f e e l they have c o n t r o l over and what f a c t o r s they f e e l they have no c o n t r o l over. of  At f i r s t  I tended t o d i s r e g a r d t h i s k i n d  i n f o r m a t i o n , t h i n k i n g t h a t i t was extraneous, b u t  a f t e r a couple o f i n t e r v i e w s I s t a r t e d t o have f a i t h  177 t h a t what my  c o - i n v e s t i g a t o r s were t e l l i n g me  p h y s i c a l and p s y c h o l o g i c a l causes was movement of the s t o r y , and c l u e s about the way  about  important t o  t h a t i t contained  people t h i n k the world  the  important operates.  T h i s meant r e t u r n i n g t o the c o - i n v e s t i g a t o r s whose information  I had  arrogantly discarded,  and  listening  again t o t h e i r s t o r i e s , t h i s time w i t h the b e l i e f what they were t e l l i n g me  was  r e l e v a n t was  that  indeed  important. Summary of the The  findings  f o l l o w i n g c o n s t i t u t e the major f i n d i n g s of  this  study: 1.  The  c a u s a l models of the c o - i n v e s t i g a t o r s developed  i n a f a i r l y t y p i c a l way,  w i t h a focus f i r s t on  p h y s i c a l , then an i n c o r p o r a t i o n of  psychological  f a c t o r s , then a c o n s i d e r a t i o n of the 2.  The  the  metaphysical;  c a u s a l models of the c o - i n v e s t i g a t o r s are  not  stage models; the i n c o r p o r a t i o n of a second element i n t o the model expands the model, and  does not  the f i r s t element.  i n t o the model an  Once i n c o r p o r a t e d  replace  element i s seldom subsequently r e j e c t e d ; 3.  Within  the framework of the general  elements of the p h y s i c a l , p s y c h o l o g i c a l ,  story, and  the  178 metaphysical themes vary s u b s t a n t i a l l y across  causal  models; 4.  At v a r i o u s p o i n t s over the course of the  illness,  d i f f e r e n t elements of a c o - i n v e s t i g a t o r ' s c a u s a l model become more or l e s s s a l i e n t t o 5.  The  her;  c o - i n v e s t i g a t o r s are keen observers of  f a c t o r s t h a t i n f l u e n c e the course of t h e i r 6.  F a c t o r s t h a t were a t one  time  the  disease;  considered  " i n f l u e n c e s " on the course of a r t h r i t i s can come t o considered 6.  be  as "causes" w i t h the passage of time;  At times the n o o l o g i c a l a t t r i b u t i o n s of a  co-  i n v e s t i g a t o r ' s model can have a d i r e c t b e a r i n g  on  her  s t a t e d purpose i n l i f e ; a t other times the r e l a t i o n s h i p i s more tenuous; 7. is  To know what a c o - i n v e s t i g a t o r ' s a t t r i b u t i o n s are insufficient.  Often,  the c o - i n v e s t i g a t o r s had  very  d i f f e r e n t a t t i t u d e s about the same a t t r i b u t i o n . The  l i f e scheme framework and the study's f i n d i n g s The  s t o r i e s presented i n t h i s study conform t o  the  framework of the . " l i f e scheme" (Thompson & J a n i g i a n , 1988).  In each of the s t o r i e s the s t o r y ' s t e l l e r ,  protagonist,  d e s c r i b e s how  she views her s e l f and  circumstances; each s t o r y r e v e a l s something of how  the her the  179 u n i v e r s e i s thought world view). of  t o operate  ( i . e . , the  teller's  Each s t o r y p r o v i d e s evidence of the g o a l s  the p r o t a g o n i s t , though i n many cases the g o a l s are  very simple, and may  i n v o l v e such t h i n g s as m a i n t a i n i n g  a sense of optimism, or d i s c o v e r i n g the l e s s o n s t h a t a r t h r i t i s has t o t e a c h .  F i n a l l y , each s t o r y d e t a i l s  those t h i n g s t h a t f r u s t r a t e or f a c i l i t a t e attainment  the  of g o a l s .  A c c o r d i n g the Thompson and J a n i g i a n (1988),  the  l i f e scheme p r o v i d e s the c o n t e x t f o r making attributions.  L i f e schemes are c o g n i t i v e  r e p r e s e n t a t i o n s of one's l i f e  "which o r g a n i z e one's  p e r s p e c t i v e on the world and o n e s e l f , g o a l s one to  wishes  a t t a i n , and events t h a t are r e l e v a n t t o those g o a l s "  (p.260).  C o g n i t i v e r e p r e s e n t a t i o n s of how  the world i s  p e r c e i v e d t o operate might be c a l l e d one's world view. A t t r i b u t i o n s are p a r t i c u l a r i n s t a n c e s of one's world view; they demonstrate how  the p r i n c i p l e s of the  world's o p e r a t i o n might be a p p l i e d t o a p a r t i c u l a r s i t u a t i o n or problem. In t h i s study I use the framework of the  life  scheme t o p r o v i d e a context f o r the c o - i n v e s t i g a t o r s ' attributions.  W i t h i n the l i f e scheme framework I have  180 chosen t o focus on each c o - i n v e s t i g a t o r ' s world view, and more p a r t i c u l a r l y on t h e a t t r i b u t i o n s f o r a s p e c i f i c problem, the problem has  o f why t h a t  individual  arthritis. The n e g a t i v e event o f a r t h r i t i s p r o v i d e s a  c h a l l e n g e t o every aspect o f an i n d i v i d u a l ' s  life  scheme, i n c l u d i n g views about t h e world and o n e s e l f , as w e l l as t h e p o s s i b i l i t y o f a c h i e v i n g one's g o a l s .  The  l i f e schemes presented i n t h i s study focus p r i m a r i l y on the c h a l l e n g e presented t o one's world view by t h e onset and p r o g r e s s i o n o f a r t h r i t i s . p o s i t i v e , benign assumptions  Many people have  about the way t h e world  operates (Thompson & J a n i g i a n , 1988), and these assumptions  a r e t e s t e d , and o f t e n d i s c a r d e d , when one  i s burdened w i t h a s e r i o u s h e a l t h t h r e a t such as arthritis. C e r t a i n l y , many o f t h e c o - i n v e s t i g a t o r s i n t h i s study express bewilderment  a t the i n j u s t i c e t h a t has  been v i s i t e d upon them, and a r e a c t i v e l y t r y i n g t o r e order the way they see the world i n o r d e r t o accommodate t h e i r a r t h r i t i s .  T h e i r l i f e schemes d e t a i l  t h e i r e v o l v i n g c a u s a l models and, i n so d o i n g , d e s c r i b e  181 the e v o l u t i o n of t h e i r world views a f t e r the onset of arthritis. The  l i f e scheme, as c o n c e i v e d by Thompson and  J a n i g i a n (1988), meaning. on two study.  i s an account  of the s e a r c h f o r  I n t e r e s t i n g l y , t h i s s e a r c h f o r meaning o c c u r s  l e v e l s i n the l i f e schemes presented i n t h i s On a broader  s t o r i e s are accounts  l e v e l the c o - i n v e s t i g a t o r s ' of changing  p e r s p e c t i v e s on s e l f ,  one's g o a l s , and the world; they address a l l of the elements of a g e n e r i c l i f e scheme.  On t h i s l e v e l , they  d e s c r i b e e f f o r t s t o r e s t o r e a sense of order and a sense of purpose a f t e r a n e g a t i v e On a second l e v e l , i f one  event.  follows a s i n g l e thread  i n the f a b r i c of the s t o r y , t h a t of c a u s a l a t t r i b u t i o n s , movement towards the e s t a b l i s h m e n t of a sense of meaningfulness witness the expansion  can e a s i l y be d e t e c t e d .  As  we  of c a u s a l models from p u r e l y  p h y s i c a l e x p l a n a t i o n s t o ones t h a t c o n s i d e r the m e t a p h y s i c a l , we are w i t n e s s i n g the g r a s p i n g f o r meaning, f o r an e x p l a n a t i o n of how  arthritis fits in  the cosmic o r d e r . Though the c o - i n v e s t i g a t o r s ' l i f e schemes are the s t o r i e s of a s e a r c h f o r meaning, not a l l of the  co-  182 i n v e s t i g a t o r s f e e l t h a t they have meaning i n t h e i r l i v e s ; indeed s e v e r a l o f them s t r u g g l e every day t o keep from b e i n g overcome by d e p r e s s i o n .  T h i s does not  mean, however, t h a t t h e s t o r i e s presented here a r e d e v i a t i o n s from t h e l i f e scheme framework. and J a n i g i a n  Thompson  (1988) say:  Having an a t t r i b u t i o n f o r a n e g a t i v e event i s not e q u i v a l e n t t o f i n d i n g meaning i n t h e e x p e r i e n c e . The l a c k o f an a t t r i b u t i o n f o r an important event i s a s s o c i a t e d w i t h t h e l o s s o f meaning, but t h e a b i l i t y t o i d e n t i f y a cause does not mean t h a t one has found o r d e r and purpose i n t h e experience (p. 273) . The s e a r c h f o r a cause i s one aspect o f t h e s e a r c h f o r meaning. Implications f o r counselling T h i s study suggests t h a t most people have a n a t u r a l i n c l i n a t i o n t o look f o r causes t o d i s e a s e s such as a r t h r i t i s .  In p a r t , t h i s c a u s a l s e a r c h i s motivated  by a d e s i r e t o know what causes and i n f l u e n c e s t h e d i s e a s e process i t s e l f ,  as such knowledge can, a t  times, impart a sense o f c o n t r o l .  However such  knowledge seems t o be i n s u f f i c i e n t f o r most people, as i t f a i l s t o address t h e e x i s t e n t i a l i s s u e s t h a t accompany  s e r i o u s i l l n e s s and d i s a b i l i t y .  183 The  c o u n s e l l o r who t r e a t s c l i e n t s attempting t o  come t o terms with a r t h r i t i s has many l e v e l s o f functioning t o consider.  F o r example, b e h a v i o r a l  methods might be d i r e c t e d a t t h e problem o f p a i n management, i n d i v i d u a l psychotherapy a t problems such as d e p r e s s i o n ,  and f a m i l y systems approaches a t t h e  m a r i t a l and f a m i l y problems t h a t can a r i s e as a consequence o f a r t h r i t i s . T h i s study suggests t h a t many c l i e n t s have a need t o r e s o l v e e x i s t e n t i a l problems as w e l l as p r a c t i c a l ones.  Some o f t h e c o - i n v e s t i g a t o r s i n t h i s study,  such  as Tamara and Gwen, f e e l a t peace with t h e n o o l o g i c a l c o n c l u s i o n s they have reached. feel i l l yearn  Many o t h e r s , however,  a t ease w i t h t h e i r t e n t a t i v e c o n c l u s i o n s , and  f o r more s a t i s f a c t o r y  explanations.  I t was q u i t e e v i d e n t d u r i n g t h e i n t e r v i e w s t h a t the c o - i n v e s t i g a t o r s were v e r y unaccustomed t o speaking on t h e n o o l o g i c a l l e v e l .  I t was e q u a l l y e v i d e n t t h a t  many a p p r e c i a t e d t h e o p p o r t u n i t y t o do so; some made comments such as " I r e a l l y needed t o have t h i s t a l k and here you a r e . "  C o u n s e l l o r s should r e c o g n i z e t h e  e x i s t e n t i a l c r i s e s o f t e n provoked by i l l n e s s and  184 d i s a b i l i t y and g i v e p e r m i s s i o n  t o c l i e n t s t o explore  the n o o l o g i c a l realm. L i m i t a t i o n s o f t h e study The major l i m i t a t i o n o f t h e study r e l a t e s t o t h e s m a l l number o f c o - i n v e s t i g a t o r s who p a r t i c i p a t e d . I t i s probably  s a f e t o assume t h a t not a l l o f t h e k i n d s o f  a t t r i b u t i o n s t h a t people w i t h inflammatory  arthritis  might make were c i t e d by p a r t i c i p a n t s i n t h i s  study.  F u r t h e r , no c l a i m s can be made t h a t t h e p r o p o r t i o n s o f people making a t t r i b u t i o n s o f a c e r t a i n k i n d , f o r example, s a y i n g t h a t t h e i r a r t h r i t i s i s punishment f o r wrong-doing, i s r e p r e s e n t a t i v e of what one might f i n d i n a l a r g e r group. Though t h e themes and t h e sequence o f t h e g e n e r a l story f i t quite well f o r nearly a l l of the coi n v e s t i g a t o r s i n t h i s study,  one might expect t h a t i n a  l a r g e r study t h e r e would be a c e r t a i n p r o p o r t i o n o f people f o r whom i t does n o t f i t . The women i n t h i s study were a l l h o s p i t a l i z e d f o r t h e i r a r t h r i t i s , and a r e a t t h e upper end o f t h e spectrum with r e s p e c t t o t h e s e v e r i t y of t h e i r arthritis.  Perhaps people whose a r t h r i t i s i s l e s s  severe might not be i n c l i n e d t o engage i n as i n t e n s e an  185 a t t r i b u t i o n a l s e a r c h as these women have been, and might have fewer elements i n t h e i r c a u s a l models. C e r t a i n l y t h i s group o f c o - i n v e s t i g a t o r s does not constitute a representative The  sample.  demographics o f t h e c o - i n v e s t i g a t o r s  study a r e so v a r i e d t h a t i t i s impossible conclusions  i nthis  t o come t o  about t h e i n f l u e n c e , f o r example, o f age on  the k i n d s o f a t t r i b u t i o n s people make.  Likewise I  cannot comment on t h e i n f l u e n c e o f c u l t u r e , m a r i t a l status, occupation, or disease  duration  on t h e k i n d s o f  a t t r i b u t i o n s t h a t were made. Implications The  f o rfurther  research  l i m i t a t i o n s o u t l i n e d above p o i n t t o d i r e c t i o n s  for further research.  A t e s t of the general  a l a r g e r group o f c o - i n v e s t i g a t o r s step.  story with  i s an obvious  first  Beyond t h a t , s t u d i e s t h a t r e s t r i c t t h e range o f  c e r t a i n demographic v a r i a b l e s , such as age, would  help  us t o understand t h e i n f l u e n c e o f those v a r i a b l e s on the k i n d s o f a t t r i b u t i o n s people make, and on t h e meanings behind those a t t r i b u t i o n s . I t would a l s o be i n t e r e s t i n g t o do comparisons o f broad groups, say comparisons o f men and women w i t h a r t h r i t i s , o r a d u l t s and c h i l d r e n , o r c h i l d r e n w i t h  186 a r t h r i t i s and t h e i r p a r e n t s .  Such s t u d i e s would g i v e  us an understanding o f how these d i f f e r e n t groups relate to their a r t h r i t i s .  I would a l s o be i n t e r e s t e d  t o see whether t h e framework o f t h e g e n e r a l s t o r y a p p l i e d t o o t h e r d e g e n e r a t i v e d i s e a s e s o f unknown e t i o l o g y , such as m u l t i p l e s c l e r o s i s . Another d i r e c t i o n might be e x p l o r e more deeply people's metaphysical a t t r i b u t i o n s , and the i n f l u e n c e these a t t r i b u t i o n s have on t h e way people l i v e lives.  their  The r e s u l t s o f t h i s study suggest t h a t such an  i n v e s t i g a t i o n would r e q u i r e a v e r y thorough e x p l o r a t i o n of the meanings a t t a c h e d t o t h e a t t r i b u t i o n s , as t h e same a t t r i b u t i o n can mean d i f f e r e n t t h i n g s t o d i f f e r e n t people. A f o o t n o t e : What the medical p r o f e s s i o n says about t h e e t i o l o g y of a r t h r i t i s How c l o s e a r e t h e c o - i n v e s t i g a t o r s , i n t h e i r t h e o r i z i n g about what causes a r t h r i t i s , t o t h e ways i n which medical p r o f e s s i o n a l s t h e o r i z e about t h e same thing? Medsger and Masi  (1985) s t a t e t h a t "most c h r o n i c  a c q u i r e d [rheumatic] d i s e a s e s a r e now b e l i e v e d t o r e s u l t from t h e i n t e r a c t i o n o f m u l t i p l e f a c t o r s r e l a t e d  187 t o t h e h o s t , environment, agents" (p.9).  and, a t times, i n f e c t i n g  Thus, l i k e t h e c o - i n v e s t i g a t o r s ,  medical r e s e a r c h e r s a r e l o o k i n g a t m u l t i f a c t o r i a l models o f e t i o l o g y f o r a r t h r i t i s .  With r e g a r d t o  g e n e t i c i n f l u e n c e s Medsger and Masi  (1985) say,  " a n a l y s i s o f twin and f a m i l y s t u d i e s c o n f i n e d t o probands w i t h e r o s i v e s e r o p o s i t i v e a r t h r i t i s showed a s i x - f o l d i n c r e a s e i n RA p r e v a l e n c e among s i b l i n g s o r d i z y g o t i c twins v e r s u s c o n t r o l s "  (p. 13).  Zvaifler  (1985) says t h a t "although t h e pathology o f RA i s undoubtedly r e l a t e d t o an inflammatory  response  i n v o l v i n g t h e immune system, t h e i n i t i a t i n g event t h a t t r i g g e r s t h i s response i s most l i k e l y a s p e c i f i c e t i o l o g i c a l agent"  (p.557).  Among t h e s p e c i f i c  e t i o l o g i c a l agents b e i n g i n v e s t i g a t e d a r e v a r i o u s types of b a c t e r i a , and v a r i o u s types o f v i r u s e s . The r o l e o f s t r e s s i n t h e onset o f a r t h r i t i s has a l s o been i n v e s t i g a t e d . Ziebell  A c c o r d i n g t o Banwell and  (1985), " i t has been suggested  that  p s y c h o l o g i c a l and b i o l o g i c a l v a r i a b l e s i n t e r a c t t o i n f l u e n c e t h e onset, p a t t e r n , and course o f rheumatoid arthritis.  In a group o f a d u l t monozygotic  of whom were d i s c o r d a n t f o r rheumatoid  twins, a l l  arthritis,  188 evidence was found f o r s t r e s s as t h e i n i t i a t i n g i n those who developed rheumatoid  arthritis"  factor  (p. 506).  Another study concluded t h a t although t h e r o l e o f p s y c h o l o g i c a l f a c t o r s i n t h e development o f RA i s u n c l e a r , p s y c h o l o g i c a l f a c t o r s do appear t o p l a y an important r o l e i n i t s course (Anderson e t a l . , A c c o r d i n g t o Medsger and Masi  1985).  (1985) sex p l a y s a  r o l e as w e l l : " s e x - r e l a t e d h o s t f a c t o r s seem t o p l a y an important r o l e i n d e t e r m i n i n g t h e onset and s e v e r i t y o f RA.  T h i s concept i s c o n s i s t e n t with r e c o g n i z e d  pregnancy-induced  r e m i s s i o n and post-partum  e x a c e r b a t i o n o r new onset o f RA." Some o f t h e c o - i n v e s t i g a t o r s i n t h i s study have made e x p l i c i t r e f e r e n c e t o medical p r o f e s s i o n a l s as sources o f e t i o l o g i c a l i n f o r m a t i o n , and have had v a r y i n g l e v e l s o f understanding o f what they have heard.  Others have c o l l e c t e d i d e a s about e t i o l o g y  from  o t h e r people with a r t h r i t i s , who, i n t u r n , may have r e c e i v e d i n f o r m a t i o n d i r e c t l y from medical professionals.  S t i l l o t h e r s have reached c o n c l u s i o n s  based on o b s e r v a t i o n , i n much t h e same way t h a t medical p r o f e s s i o n a l s form hunches on t h e b a s i s o f c l i n i c a l observation.  189 References A f f l e c k , G., P f e i f f e r , C , Tennen, H., & F i f i e l d , J . (1987). A t t r i b u t i o n a l processes i n rheumatoid a r t h r i t i s p a t i e n t s . A r t h r i t i s and Rheumatism, 30, 927-931. Anderson, K.O., B r a d l e y , L.A., Young, L.D., McDaniel, L.K., & Wise, C M . (1985). Rheumatoid a r t h r i t i s : Review o f p s y c h o l o g i c a l f a c t o r s r e l a t e d t o e t i o l o g y , e f f e c t s , and treatment. P s y c h o l o g i c a l B u l l e t i n . 98 358-387. f  B a i d e r , L., & S a r e l l , M. (1983). P e r c e p t i o n s and c a u s a l a t t r i b u t i o n s o f I s r a e l i women w i t h b r e a s t cancer concerning t h e i r i l l n e s s : The e f f e c t s o f e t h n i c i t y and r e l i g i o s i t y . Psychotherapy and Psychosomatics. 39 . 136-143. Banwell, B.F., & Z i e b e l l , B. (1985). P s y c h o l o g i c a l and s e x u a l h e a l t h i n rheumatic d i s e a s e s . In W.N. K e l l e y , E.D. H a r r i s , S. Ruddy, & C.B. Sledge ( E d s . ) , Textbook o f Rheumatology (2nd ed., pp. 497-510). P h i l a d e l p h i a : W.B. Saunders. Berkow, R., (Ed.). (1987). The Merck manual o f d i a g n o s i s and therapy. Rahway, NJ: Merck Sharp and Dohme Research L a b o r a t o r i e s . Bulman, R.J., & Wortman, C. (1977). A t t r i b u t i o n s of blame and c o p i n g i n t h e r e a l world: Severe a c c i d e n t victims react t o t h e i r l o t . Journal of Personality and S o c i a l Psychology, 35, 351-363. Bury, M. (1982). C h r o n i c i l l n e s s as b i o g r a p h i c a l d i s r u p t i o n . S o c i o l o g y o f H e a l t h and I l l n e s s , 4 169-184. f  Bury, M. (1991). The s o c i o l o g y o f c h r o n i c i l l n e s s : A review o f r e s e a r c h and p r o s p e c t s . S o c i o l o g y o f H e a l t h and I l l n e s s . 13, 451-468. Carpenter, C. (1991). The experience o f s p i n a l c o r d i n j u r y as t r a n s f o r m a t i v e l e a r n i n g . Unpublished master's t h e s i s . U n i v e r s i t y o f B r i t i s h Columbia, Vancouver.  190 Cochran, L. (1990). The sense of v o c a t i o n . York: S t a t e U n i v e r s i t y of New York P r e s s .  New  Frank, R.G., Beck, N.C., Parker, J.C., Kashani, J.H., E l l i o t , T.R., Haut, A.E., Smith, E., Atwood, C., Brownlee-Duffeck, M., & Kay, D.R. (1988). Depression i n rheumatoid a r t h r i t i s . J o u r n a l of Rheumatology, 15, 920925. F r a n k l , V. (1984). Man's s e a r c h f o r meaning. York: Washington Square P r e s s . F r a n k l , V. Meridian.  (1969). The w i l l t o meaning. New  New York:  Genest, M. (1983). Coping w i t h rheumatoid a r t h r i t i s . Canadian J o u r n a l of B e h a v i o u r a l S c i e n c e , 15, 392-408. Gotay, C.C. (1985). Why me? A t t r i b u t i o n s and adjustment by cancer p a t i e n t s and t h e i r mates a t two stages i n the d i s e a s e p r o c e s s . S o c i a l Science and Medicine, 20, 825-831. Haight, B. (1991). R e m i n i s c i n g : The s t a t e of the a r t as a b a s i s f o r p r a c t i c e . I n t e r n a t i o n a l J o u r n a l of Aging and Human Development, 33, 1-32. Hammersley, M., & A t k i n s o n , P. (1983). Ethnography: P r i n c i p l e s i n p r a c t i c e . New York: Tavistock. Jaber, R., S t e i n h a r d t , S,, & T r i l l i n g , J . (1991). E x p l a n a t o r y models of i l l n e s s : A p i l o t study. Family Systems Medicine, 9, 39-51. J e n k i n s , R.A., & Pargament, K.I. (1988). C o g n i t i v e a p p r a i s a l s i n cancer p a t i e n t s . S o c i a l S c i e n c e and Medicine, 26, 625-633. Kleinman, A. (1988). The i l l n e s s York: B a s i c Books.  narratives.  Lazarus, R.S., & Folkman, S. (1984). S t r e s s , a p p r a i s a l and c o p i n g . New York: S p r i n g e r .  New  191 L e r n e r , M.J. (1980). The b e l i e f i n a j u s t world: A fundamental d e l u s i o n . New York: Plenum. M a r s h a l l , D. (1993). The experience of d e n t a l avoidance. Unpublished master's t h e s i s . U n i v e r s i t y of B r i t i s h Columbia, Vancouver. Medsger, T.A., & Masi, A.T. (1985). Epidemiology of rheumatic d i s e a s e s . In D.J. McCarty (Ed.), A r t h r i t i s and a l l i e d c o n d i t i o n s : A textbook o f rheumatology. (pp. 9-39). P h i l a d e l p h i a : Lea and Febiger. M i s h l e r , E.G. (1986). Research i n t e r v i e w i n g : Context and n a r r a t i v e . Cambridge: Harvard U n i v e r s i t y Press. Moos, R.H., & Solomon, G.F. (1964). Minnesota M u l t i p h a s i c P e r s o n a l i t y Inventory response p a t t e r n s i n p a t i e n t s w i t h rheumatoid a r t h r i t i s . J o u r n a l o f Psychosomatic Research, 8, 17-28. Moscowitz, R.W. (1971). P s y c h o s o c i a l a s p e c t s of rheumatoid a r t h r i t i s . J o u r n a l o f the A l b e r t E i n s t e i n Medical Center, 19, 36-39. Pargament, K.I., E n s i n g , D.S., F a l g o u t , K., Olsen, H., R e i l l y , B., Van Haitsma, K., & Warren, R. (1990). God h e l p me: ( 1 ) : R e l i g i o u s c o p i n g e f f o r t s as p r e d i c t o r s of the outcomes of n e g a t i v e l i f e events. American J o u r n a l of Community Psychology, 18, 793824. Poulton, J . , & S t r a s s b e r g , D. (1986). The t h e r a p e u t i c use of r e m i n i s c e n c e . I n t e r n a t i o n a l J o u r n a l of Group Psychotherapy. 36 381-398. r  R e i s i n e , S. (1993, November). Access and gender: General i s s u e s and a p p l i c a t i o n t o a r t h r i t i s c a r e and r e s e a r c h . Paper presented a t the A r t h r i t i s H e a l t h P r o f e s s i o n s Conference, San A n t o n i o , TX.  192 Robinson, I . (1990). P e r s o n a l n a r r a t i v e s , s o c i a l c a r e e r s and medical c o u r s e s : A n a l y s i n g l i f e t r a j e c t o r i e s i n a u t o b i o g r a p h i e s of people w i t h m u l t i p l e s c l e r o s i s . S o c i a l S c i e n c e and Medicine. 30. 1173-1186. R u s s e l l , R. (1991). N a r r a t i v e i n views o f humanity, s c i e n c e , and a c t i o n : Lessons f o r c o g n i t i v e therapy. J o u r n a l o f C o g n i t i v e Psychotherapy, 5, 241256. S c h u s s l e r , G. (1992). Coping s t r a t e g i e s and i n d i v i d u a l meanings o f i l l n e s s . S o c i a l Science and Medicine, 34, 427-432. Sholomskas, D.E., & S t e i l , J.M. (1990). The s p i n a l c o r d i n j u r e d r e v i s i t e d : The r e l a t i o n s h i p between s e l f blame, other-blame and c o p i n g . J o u r n a l o f A p p l i e d S o c i a l Psychology, 20, 548-574. Smith, C.A., & W a l l s t o n , K.A. (1992). A d a p t a t i o n i n p a t i e n t s w i t h c h r o n i c rheumatoid a r t h r i t i s : A p p l i c a t i o n o f a g e n e r a l model. H e a l t h Psychology. 11. 151-162. S t i e n , J . (Ed.). (1983). Random House d i c t i o n a r y of t h e E n g l i s h language. New York: Random House. ed.).  S o l s o , R.L. (1988). C o g n i t i v e Psychology (2nd Toronto: A l l y n and Bacon.  Swain, D. (1990). Withdrawing from p r o f e s s i o n a l s p o r t . Unpublished d o c t o r a l d i s s e r t a t i o n . U n i v e r s i t y o f B r i t i s h Columbia, Vancouver. Thompson, S.C., & J a n i g i a n , A.S. (1988). L i f e schemes: A framework f o r understanding t h e s e a r c h f o r meaning. J o u r n a l o f S o c i a l and C l i n i c a l Psychology, 7. 260-280. Timko, C , & Janoff-Bulman, R. (1985). A t t r i b u t i o n s , v u l n e r a b i l i t y , and adjustment: The case of b r e a s t c a n c e r . H e a l t h Psychology, 4, 521-544.  193 Viney, L., & B o u s f i e l d , L. (1991). N a r r a t i v e a n a l y s i s : A method o f p s y c h o s o c i a l r e s e a r c h f o r AIDSa f f e c t e d people. S o c i a l S c i e n c e and Medicine, 32, 757765. W i l l i a m s , G. (1984). The g e n e s i s o f c h r o n i c i l l n e s s : Narrative reconstruction. Sociology of Health and I l l n e s s , 6, 175-200. Wong, P., & Weiner, B. (1981). When people ask why' q u e s t i o n s , and t h e h e u r i s t i c s o f a t t r i b u t i o n a l s e a r c h . J o u r n a l o f P e r s o n a l i t y and S o c i a l P s y c h o l o g y 40. 650-653. x  r  Zautra, A.J., & Manne, S.L. (1992). Coping w i t h rheumatoid a r t h r i t i s : A review o f a decade o f r e s e a r c h . Annals o f B e h a v i o r a l Medicine, 14, 31-39. Z v a i f l e r , N.J. (1985). E t i o l o g y and pathogenesis of rheumatoid a r t h r i t i s . In D.J. McCarty (Ed.), A r t h r i t i s and a l l i e d c o n d i t i o n s : A textbook o f rheumatology. (pp. 557-570). P h i l a d e l p h i a : Lea and Febiger.  194  Appendices  o  CO tr S S H3 D O r t o OJ OJ OJ F 0J 3 OJ CD M W F - 0 F - O 3 CD M OJ 3 3 CD l-i OJ H 3 fO OJ CD >< F •< F - CD 3 3 C-4 S CD 0) (1)  1  o  hj hf cr  c  hi a hi  ne  CO O  F- O 3 O  tr  CD W rt F-  FCD  <!  1  lQ  OJ rt O l-i  >  CO X II II  CD  >c cn co go cn X II II M to co «3  r O N j M K S C O M W W C O U J i f e C n O ~J U l O O I O O l O t O P  to  cn X II II  *.  CO M Cn.  P U) (C M CO tO  ID  H H M H CTl >fe to cn  M  co  Cn  >  O 3 w CD CD r t 0) -ft  3  O rt 3 3" CD 13 CD 3 H l-S rt o  a  n H CD hf Fn OJ h-  1  0J  '3  c <  CD 3 PH CD pd > 3* H CD r t  6 ^ 3  n OJ F rt rt O FF - to  a >  Q6T  l-i rt 3* l-i Frt FC/l  CO CO F- P3 3 iQ iQ H H CD CD  O w F-  to  OJ rt O F - CD  > i-i rt 3* hi Frt Fto  3  o uQ hf OJ TJ 3* Fn w  K F - CD 3 0) O l-i CD  rt 3 3 Hf O F F - r t Iw F3" CD 0) CD r t h- hf OJ hi CD •< h-' 3  cl-i  1  cr 1  i-i Frt CD hi  3 3  0 rt 3" CD l-i  3 o C rt 3 * Cfl CD CD l-i  O O o  c  T3 0) rt Fo 3  CD l-i  II  D CD  to  der  wor  CD Q.  D F-  F3 < CD CO rt FiQ OJ rt O l-i  to  rt 3 C CD  c-i  o o  CO F- 3* ;*r F 3* r t CD o OJ 3 OJ a FOJ 3  CO CO S £ F - F - OJ OJ 3 3 hi hf i Q H hi H H F- FCD CD CD CD CL a a  0) ii hi FCD  T l s: F- 3* hi F rt r t CD  £  Z OJ rt Po 3  O OJ 3 OJ a FOJ 3  to  O OJ 3 OJ a F0) 3  to  3* Frr CD  Tl Fhj cn rt  Tl hi CD 3 n 3"  Z, OJ O rt FO 3 W  OJ 3 OJ  a  FOJ  S S S  OJ hi hi FCD a  0) hi hi FCD a  s: 3Frt CD  M 3* 3 H-cQ rt H CD F Cfl O 3" OJ 3 OJ a FOJ 3  O OJ 3 OJ a FOJ 3  OJ hi l-i FCD CL  D O F- F-  < O < O  hi hi n n CD CD  CO rt OJ rt d w  S  OJ hi Frt 0)  a a 33 CD h-' W 3"  3" Frt CD  a OJ 3 OJ a FOJ 3  O C rt C hi CD  IS? Ti CD 3  a  F-  196  Appendix B: My When I was  own  t e n years o l d , and l i v i n g i n n o r t h e r n  A l b e r t a , I went on a h i k e w i t h my dead of w i n t e r .  story  Brownie troupe i n the  I remember t h i s h i k e very  because a t one p o i n t we came upon a g r i s l y  vividly, scene;  someone had s l a u g h t e r e d about twenty r a b b i t s , and  their  dismembered bodies l a y strewn c a r e l e s s l y about, s t a i n i n g the snow b l o o d - r e d .  We were out i n the woods  f o r s e v e r a l hours, much l o n g e r than reason might have allowed g i v e n the c o l d , and I remember s a y i n g t o one the l e a d e r s t h a t I had One  l o s t the f e e l i n g i n my  of  feet.  of the o t h e r g i r l s decided t o t e s t whether or not  t h i s were t r u e , and stomped as hard as she c o u l d on right foot. W i t h i n a few weeks of t h i s h i k e my s t a r t e d t o s w e l l and ache.  right  ankle  I would wake up i n the  middle  of the n i g h t and go sobbing i n t o my  room.  My mother was  quite dismissive at  parents'  first,  r e g a r d i n g these episodes as p l a y s f o r a t t e n t i o n , a r e a c t i o n t h a t b a f f l e s me p e r s i s t e n c e as w e l l as my  t o t h i s day,  but  hugely swollen  e v e n t u a l l y persuaded her t o take me  my ankle  t o the d o c t o r .  my  197 A f t e r t a k i n g x-rays  t h e d o c t o r t o l d us t h a t my  ankle was f r a c t u r e d and put my f o o t i n a c a s t .  I t was  a l l q u i t e c o n f u s i n g ; when t h e k i d s a t s c h o o l asked me how I had broken my ankle I had t o say " I don't know". A few weeks l a t e r when I r e t u r n e d t o have t h e c a s t removed, my ankle s t i l l  as swollen and p a i n f u l as ever,  the d o c t o r t o l d us t h a t i n f a c t my ankle was not f r a c t u r e d and t h a t I needed t o have some b l o o d  tests.  My d o c t o r i n t e r r o g a t e d my mother and me i n a f r u s t r a t e d search f o r an e x p l a n a t i o n o f my c o n d i t i o n , but t h e o n l y e x p l a n a t i o n we were able t o o f f e r him was t h a t I had f r o z e n my f e e t on a Brownie h i k e , and t h a t some g i r l had  stomped on my r i g h t f o o t . I t took s e v e r a l t e s t s and s e v e r a l weeks, i f n o t  months, t o f i n a l l y a r r i v e a t a d i a g n o s i s o f rheumatoid arthritis.  I remember t h a t on t h e way home from t h e  d o c t o r t h e day I was g i v e n my d i a g n o s i s , my mother stopped a t t h e g r o c e r y s t o r e , and I stayed i n t h e c a r w h i l e she went i n .  I had no i d e a about t h e  i m p l i c a t i o n s o f what I had j u s t been t o l d , but I s a t t h e r e stunned, my body  buzzing.  I was not a l t o g e t h e r u n f a m i l i a r with rheumatoid arthritis  as my g r a n d f a t h e r  had a very severe case o f  198  it.  I f i r s t s t a r t e d t o know him when I was around  e i g h t years o l d as our f a m i l y had l i v e d overseas then.  He was t a l l and t h i n , and moved w i t h  before  difficulty,  but what r e a l l y s t r u c k me was t h e way h i s hands looked. The  j o i n t s o f h i s f i n g e r s were huge, and they  jutted  t h i s way and t h a t way i n s t r a n g e l y u n n a t u r a l a n g l e s . "Why don't t h e d o c t o r s f i x h i s hands?", I implored my p a r e n t s .  They e x p l a i n e d t h a t Grandpa's a r t h r i t i s  was as bad as i t was because o f t h e horrendous c o n d i t i o n s he had had t o endure as a s o l d i e r i n World War I I .  They f u r t h e r e x p l a i n e d t h a t h i s c o n d i t i o n was  beyond r e p a i r because i t was so l o n g s t a n d i n g .  When we  r e t u r n e d from our f i r s t v i s i t t o h i s home i n Kelowna I t o l d my f r i e n d s about my g r a n d f a t h e r ' s hands w i t h t h e same i n t o n a t i o n i n my v o i c e t h a t I might have used were I d e s c r i b i n g some grotesque c r e a t u r e from a Saturday matinee. For t h e f i r s t year a f t e r my d i a g n o s i s , my a r t h r i t i s was c o n f i n e d t o my ankles and I looked completely normal, except f o r my c r u t c h e s . v i s i t e d my grandparents  When we  a t E a s t e r t h a t year, my parents  asked me not t o use my c r u t c h e s , an odd request s i n c e I was f o r e v e r meeting w i t h r e s i s t a n c e from them when I  199 suggested t h e same t h i n g . me t h a t my g r a n d f a t h e r arthritis.  When I asked why, they t o l d  would be upset i f he knew I had  On one hand, I understood t h e i r concern;  t h i s was a man so s e n s i t i v e t h a t he would not a l l o w c u t flowers  i n h i s house because he c o u l d not bear t o watch  them d i e .  But the s e c r e c y t h a t was requested o f me  somehow changed t h e way I looked  a t my own a r t h r i t i s ;  i t was a t t h a t time t h a t I s t a r t e d t o sense how s e r i o u s i t might become. My grandmother was s e r i o u s l y i l l knew t h a t her c o n d i t i o n was t e r m i n a l .  t h a t year, and we My f a t h e r t o l d  me t h a t Grandpa had s a i d t o him out i n the garden t h a t summer, " i f your Mom's not here t o see these flowers i n the s p r i n g , I ' l l take them t o her".  I didn't  understand what t h a t meant, and when I asked my f a t h e r t o e x p l a i n , he t o l d me t h a t , l i k e animals, when people l o s e the w i l l t o l i v e , they d i e . We moved t o V i c t o r i a a t t h e b e g i n n i n g o f the next s c h o o l year, and I was q u i t e traumatized  by the move.  No longer were we l i v i n g on an a i r f o r c e base where everybody's dads worked t o g e t h e r ,  and where c h i l d r e n  were accustomed t o making new f r i e n d s because they moved so o f t e n .  The c h i l d r e n i n my new c l a s s had  200 progressed through s c h o o l t o g e t h e r s i n c e k i n d e r g a r t e n , and were not welcoming t o newcomers. f r i e n d t h a t year, the o t h e r new she drove me  I had o n l y  girl  i n the c l a s s ,  and  t o the p o i n t of d e s p e r a t i o n w i t h her  c o m p e l l i n g need t o s u r p r i s e me w i t h broad of rubber cement t o my  brushstrokes  arms.  S h o r t l y a f t e r s c h o o l s t a r t e d t h a t year, a r t h r i t i s s t a r t e d t o spread. s h o u l d e r s , my  one  my  I t h i t my knees,  elbows and my hands.  Even my  a f f e c t e d t h a t I c o u l d h a r d l y move i t .  my  jaw was  so  I remember one  morning b e f o r e s c h o o l I s a t down on the f l o o r t o put shoes on, and when I t r i e d t o get up I c o u l d n ' t . f a t h e r was  anxious t o get going, and t o l d me  up so we wouldn't be l a t e .  my  My  to hurry  I t r i e d r o l l i n g on t o  one  knee, and then the o t h e r , and then back a g a i n .  My  hands were of no h e l p t o me.  I said.  "I can't get up",  A look of what I thought was his face.  anger f l a s h e d a c r o s s  "What do you mean you can't get up?",  s a i d g r u f f l y , "get up r i g h t now!".  As an  he  eleven-year-  o l d I d i d not r e a l i z e t h a t f e a r sometimes sounds l i k e anger. That was my  a m i s e r a b l e year f o r me.  At a time when  peers were becoming more and more independent,  I  201  c o u l d n ' t even put my a l i e n a t e d me  own  f u r t h e r from my  the c l a s s was  My  arthritis  classmates.  Once, when  walking down the h a l l t o the  F l o y d , the most popular l i m p i n g and  socks on.  boy  library,  i n the c l a s s , n o t i c e d  sneered, "can't you walk y e t ? " .  laughed as they were supposed t o , and  me  Everyone  I became F l o y d ' s  p e r s o n a l p o p u l a r i t y meter. When I asked my so bad,  she t o l d me  an e x p l a n a t i o n  mother why  a r t h r i t i s had become  t h a t s t r e s s c o u l d cause f l a r e - u p s ,  t h a t had  apparently  by h e a l t h p r o f e s s i o n a l s . explanation  my  been o f f e r e d t o  her  I t seemed a s a t i s f a c t o r y  a t the time because my  l i f e was  certainly  stressful. I managed t o weather t h a t s c h o o l year, and by time I s t a r t e d grade seven, I was  the  doing q u i t e w e l l .  I  had a few r e s i d u a l problems; opening the heavy f r o n t door t o the s c h o o l was  d i f f i c u l t , as were t u r n i n g  taps i n the bathtub, and u s i n g the hand brakes on bike.  my  I s e t myself the g o a l of being able t o s i t on  h e e l s , a t a s k which r e q u i r e s f u l l knee f l e x i o n ankle e x t e n s i o n , with my  the  and  and  spent many hours i n the bathroom  knee up on the counter,  p r e s s i n g down hard  my  202  and  f o r c i n g my j o i n t s t o comply.  past,  A f t e r some time had  I had not o n l y reached t h i s g o a l , but was even  t a k i n g jazz dance l e s s o n s . I spent over two y e a r s q u i t e f r e e from a r t h r i t i s . I t was d u r i n g t h i s time t h a t we decided grandfather  t h a t my  ought t o come t o l i v e w i t h our f a m i l y .  f e l t as though he and I were k i n d r e d  I  s p i r i t s , not  because o f our shared d i a g n o s i s , but because o f t h i n g s l i k e our shared l o v e f o r a r t .  I was very drawn t o him.  He stayed w i t h us o n l y a s h o r t time because he had s e r i o u s c i r c u l a t o r y problems t h a t f o r c e d h i s hospitalization.  The d o c t o r s  decided  t h a t they would  have t o amputate h i s l e g s i n order t o save h i s l i f e . He s a i d t h a t he would r a t h e r d i e than l o s e h i s l e g s , and he d i d . Around Christmas time t h e year I was i n grade nine I s t a r t e d t o n o t i c e c l i c k i n g i n my knees.  Within  weeks I was i n a f u l l - b l o w n f l a r e u p and my d o c t o r  a few told  me I would have t o be admitted t o h o s p i t a l f o r about three weeks.  When I was n o t c a l l e d i n by t h e h o s p i t a l  i n s h o r t order, he admitted me on an emergency b a s i s . Although I was i n a p p a l l i n g c o n d i t i o n a t t h e time, I couldn't  understand why t h i s was any d i f f e r e n t from  203  my  previous  f l a r e u p , and  f u l l y expected t h a t I would  have t o go through a tough year or so, f o l l o w e d by lengthy  a  r e b u i l d i n g , but t h a t e v e n t u a l l y t h i n g s would  back t o normal.  When I mentioned t o one  t h e r a p i s t s t h a t I was  expecting  of  be  my  t o be i n h o s p i t a l f o r  t h r e e weeks, she s a i d i t would probably be more l i k e f i v e or s i x . I was  f i n a l l y r e l e a s e d a f t e r more than  three  months, and much a g i t a t i o n , i n worse shape than I been i n a t my briefly  admission.  shared my  A girl  from my  school  room near the b e g i n n i n g of  admission, and when she came back t o v i s i t end,  she s a i d t o me  than you  did".  "you  I t was  e s p e c i a l l y s i n c e I was  had  had  my  towards the  look a l o t more... c r i p p l e d  a g r e a t blow t o hear  this,  h o l d i n g f a s t t o the i d e a t h a t I  had the k i n d of a r t h r i t i s t h a t would come and go,  not  the k i n d t h a t would p r o g r e s s i v e l y d e s t r o y me  like i t  had  in  every other a r t h r i t i s p a t i e n t t h a t I met  hospital. I was a few  different.  I wasn't l i k e Judy, a g i r l  years o l d e r than me,  whose a r t h r i t i s had  her body, l e a v i n g her f r a i l and of constant  nursing  s k e l e t a l , and  from her mother.  only  ravaged i n need  I remember Judy's  204  mother having t o l i f t her from her w h e e l c h a i r i n t o a standing pool.  p o s i t i o n so t h a t she c o u l d be helped i n t o the  I t o l d my  f r i e n d s about Judy i n such a way  they would b e l i e v e t h a t I was was  that  not another Judy, t h a t I  not t o be w r i t t e n o f f as a c r i p p l e , t h a t t h i s  a l l going t o pass.  "Poor Judy", I s a i d , "she  was  has  the  k i n d of a r t h r i t i s t h a t doesn't go away". Although I had  fought long and hard f o r  my  r e l e a s e from the h o s p i t a l , l i f e on the o u t s i d e was what I imagined i t would be. supportive my  came from a s t r o n g l y  a s s e r t e d t h a t my  f o r the wrongdoing of my w i t h p a i n and i n t o my  f r i e n d s were not  neck and  parents.  s i t up  My  fundamentalist  I winced and  body was  Once my  i n bed.  t r i e d p u t t i n g her hand under my  She  wracked  mother came put  her  s a i d "no!";  she  shoulders,  then  back, then anywhere e l s e she c o u l d t h i n k o f , but stand t o be  and  a r t h r i t i s must be punishment  I c o u l d h a r d l y move.  room t o h e l p me  hand under my  couldn't  as  or as a v a i l a b l e as I would have l i k e d ,  b e s t f r i e n d , who  family,  My  not  touched.  F i n a l l y she s a i d "where can  I h o l d you?"  my I  205  "Grab my nose", I s a i d because I c o u l d n ' t t h i n k o f anything  e l s e t h a t d i d n ' t h u r t , and we both laughed and  cried. Being a t home allowed  f o r a r e l e a s e o f emotions  t h a t was not p o s s i b l e while  I was housed with  four  roommates i n the h o s p i t a l .  I c r i e d c o n t i n u o u s l y , and  t o l d my mother I d i d n ' t want t o end up l i k e C o l l e e n , my twenty-five-year-old it  impossible  arthritis,  h o s p i t a l roommate who was f i n d i n g  t o continue  working because o f her  and who wanted t o be married  d e s t i n e d t o remain s i n g l e .  but seemed  I was g r a p p l i n g with a l l o f  the evidence t h a t seemed t o d e f i n e my  previous  r e m i s s i o n as a l u c k y , l a s t - t i m e r e p r i e v e . At n i g h t , when I went t o bed, I would c r y as my mother turned out t h e l i g h t ,  b e l i e v i n g t h a t t h a t was  the l a s t time I would see h e r .  L i k e my g r a n d f a t h e r  b e l i e v e d t h a t t h e l o s s o f my grandmother would  who  leave  him so broken-hearted t h a t h i s s p i r i t would be r e l e a s e d t o be with hers, t h e man who d i e d r a t h e r than l o s e h i s l e g s , I b e l i e v e d t h a t my w i l l t o l i v e was d e p l e t e d , and t h a t I would d i e i n the n i g h t . T h i s s t a t e o f u t t e r d e s p a i r l a s t e d f o r months until  two very profound p s y c h o l o g i c a l changes  occurred  206 t o l i f t me  out of my  and w i l l t o l i v e . and  depression  I was  r e s t o r e my  optimism  f i f t e e n years o l d a t the  t y p i c a l l y s e l f - c e n t r e d and  others.  and  unappreciative  time,  of  An almost i n e x p l i c a b l e change came over  me  when suddenly I began t o see the l o v e which flowed between me  and my  especially  acute because of i t s sharp c o n t r a s t w i t h  what had  family.  gone b e f o r e .  began t o r e g a r d f o r what I had extraordinary  T h i s new  realization  So i n t e n s e was  my  f e e l i n g that I  i t as more than adequate compensation l o s t ; my  l o v e f o r my  g i f t whose p r i c e had  f a m i l y was  new  optimism.  (1984, p. 86).  thinking  I embraced what F r a n k l  c a l l s "the l a s t of the human freedoms — one's a t t i t u d e i n any  an  been my d i s a b i l i t y .  A second, e q u a l l y profound change i n my b o l s t e r e d my  was  t o choose  g i v e n s e t of c i r c u m s t a n c e s "  L i k e most people I had b e l i e v e d t h a t  emotions were c o n t i n g e n t  upon my  situation,  and,  my  of  course, they were as long as I h e l d t h i s b e l i e f ; i n a sense I had feelings.  f e l t t h a t my  " e n t i t l e d " me  But w i t h g r e a t suddenness e v e r y t h i n g  c l e a r t o me; happy and  situation  my  c o n d i t i o n was  to  became  a g i v e n , but I c o u l d  i n t h i s c o n d i t i o n or unhappy and  my  in this  be  207  condition.  In what f e l t l i k e a d e c i s i o n between l i f e  and death, I chose happiness. T h i s change o c c u r r e d d e s p i t e a steady worsening o f my a r t h r i t i s .  My d o c t o r  f e l t t h a t I should be sent t o  a h o s p i t a l i n Vancouver, but I f l a t l y r e f u s e d t o heed his  a d v i c e , mostly because I d i d not want t o be away  from my f a m i l y .  But as the days went by, i t took  longer and longer f o r me t o l o c k my l e g s underneath me so t h a t I c o u l d make the s h o r t t r i p from my bedroom t o the bathroom. completely  F i n a l l y , t h e day came when I was  unable t o do i t , and I was re-admitted  to  hospital i n Victoria. I spent s i x months i n t h a t V i c t o r i a h o s p i t a l , and made no progress  whatsoever.  However, my s p i r i t s were  good; I had met another p a t i e n t , a P o l i s h f e l l o w who had been i n a c a r a c c i d e n t while v i s i t i n g h i s Canadian relatives.  He was i n h o s p i t a l with me the e n t i r e  l e n g t h o f my s t a y , and we had g r e a t fun t o g e t h e r . spoke v i r t u a l l y no E n g l i s h i n t h e beginning, g l a d l y became h i s t u t o r . acted out s i l l y inseparable.  He  and I  We drew funny p i c t u r e s , and  r o l e p l a y s , and were almost  He a l s o taught me t o speak some P o l i s h ,  208  and we  had p l e n t y of p r i v a t e jokes i n a language no  one  around us spoke. My  d o c t o r t o l d me,  and a f t e r s e e i n g my  some months i n t o my  x-rays, t h a t my  admission,  h i p s were so  damaged t h a t they would need t o be r e p l a c e d , but the surgery c o u l d not be done u n t i l I was  that  nineteen.  T h i s meant, he s a i d , t h a t I would be c o n f i n e d t o a wheelchair  f o r the next f o u r years or so.  It also  meant t h a t I would have t o a t t e n d a d i f f e r e n t s c h o o l , one  t h a t would accommodate w h e e l c h a i r s .  d e v a s t a t i n g news, and confirmed the permanence of my  my  disability.  a l r e a d y come t o the understanding was  This  worst f e a r s about Although I had t h a t one's happiness  not c o n t i n g e n t upon one's circumstances,  p h y s i c a l p a i n was  almost unbearable, and  wheelchair  identity.  My d o c t o r was  very concerned about  p s y c h o l o g i c a l h e a l t h as w e l l . r e l a t i o n s h i p with my conceive  my  I found i t  very d i f f i c u l t t o i n c o r p o r a t e the i d e a of a i n t o my  was  my  Unaware of  my  P o l i s h f r i e n d , and unable t o  of anyone i n such rough shape as I was  being anything but m i s e r a b l e , psychologist.  I was  he r e f e r r e d me  a b s o l u t e l y bewildered  then  to a  by t h i s ,  but  209  played  along anyway.  The p s y c h o l o g i s t d i d two t h i n g s .  F i r s t , he arranged f o r a young woman who had been s e r i o u s l y and permanently d i s a b l e d i n an a c c i d e n t t o come and v i s i t me; t h i s woman t r i e d t o s e l l me on t h e i d e a t h a t being d i s a b l e d was wonderful, and t h a t she would not have i t any other way.  Second, he decided  t h a t I needed some s o r t o f a pastime, and he put me i n c o n t a c t w i t h another p a t i e n t who was a p a i n t e r .  This  p a i n t e r and I produced many w a t e r c o l o u r s i n t h e occupational  therapy room, and, i n r e t r o s p e c t , I  suppose t h a t t h e p s y c h o l o g i s t must have f e l t some s a t i s f a c t i o n a t h i s two model p a t i e n t s , w h i l i n g away the hours i n what might have appeared t o be serene resignation. A f t e r s i x months, my d o c t o r concluded t h a t was  r e a l l y nothing  he c o u l d do f o r me, and once  there again  proposed t h a t I go t o G.F. Strong, t h e r e h a b i l i t a t i o n centre  i n Vancouver.  T h i s would mean l e a v i n g my  beloved two-year-old s i s t e r , whose g e n t l e , funny  spirit  made me f o r g e t a l l o f my woes, my f a t h e r , who brought me c h o c o l a t e  milkshakes when I was almost p e r i s h i n g  from s t a r v a t i o n (the consequence o f my r e f u s a l t o e a t h o s p i t a l food) and who sneaked i n t o t h e h o s p i t a l t h e  210 puppy he had g o t t e n t o keep me company, and my mother, whose constancy, f o r g i v e n e s s and g e n e r o s i t y gave me so much s t r e n g t h . Another t h i n g bothered  me as w e l l ; as l o n g as I  was i n the V i c t o r i a h o s p i t a l where the most common reason  f o r admission  was the removal of knee c a r t i l a g e ,  where most p a t i e n t s were d i s c h a r g e d t o resume t h e i r o l d l i v e s ,  a f t e r a week o r so  I c o u l d maintain  t h a t t h i s was a l l a temporary inconvenience. G.F. Strong,  the f a n t a s y To e n t e r  a p l a c e where people were l e a r n i n g t o l i v e  with s e r i o u s and permanent d i s a b i l i t y was, I imagined, t o enter another sphere a l t o g e t h e r , a nightmare  world  where people moaned and d r o o l e d , t h e i r eyes a t h a l f mast. Many of the p a t i e n t s a t G.F. Strong had  indeed  endured the unimaginable; sometimes s e v e r a l members o f the same f a m i l y who had been i n a s i n g l e a c c i d e n t were d e a l i n g with d e v a s t a t i n g i n j u r y while a t the same time g r i e v i n g the l o s s of l o v e d ones who had not s u r v i v e d . I saw c r i m i n a l s who had been i n j u r e d i n the commission of t h e i r crimes and many young men s t r u c k down by i s o l a t e d a c t s of f o o l i s h n e s s .  The woman i n the room  211 a c r o s s the h a l l would s h r i e k and c r y every time she went t o t h e bathroom, b e l i e v i n g she was g i v i n g b i r t h . Yet d e s p i t e t h e h o r r o r o f a l l o f t h i s , I found t h e experience v e r y u p l i f t i n g .  G.F. Strong was not a  depressing place.  t h e r e were some p a t h e t i c  Although  s o u l s , they were not n e c e s s a r i l y those with t h e greatest physical d i s a b i l i t y .  Many o f those w i t h t h e  g r e a t e s t misfortune were those most r e s i l i e n t , adjusted.  My f e l l o w p a t i e n t s confirmed  best  f o r me t h a t  t h e r e i s no c o r r e l a t i o n between one's s i t u a t i o n and one's c a p a c i t y f o r happiness,  and t h i s was tremendously  freeing. I was r e l e a s e d from G.F.Strong a f t e r many months, and soon r e t u r n e d t o h i g h s c h o o l a f t e r a two-year absence.  I r e t u r n e d t o s c h o o l determined t o repay  parents f o r a l l they had done f o r me i n those two  y e a r s , and r e s o l v e d t o use the g i f t  c a p a c i t y f o r academics.  my  difficult  I still  had, a  I pursued my s t u d i e s so  doggedly t h a t I a c t u a l l y d i d myself  g r e a t p h y s i c a l harm  t h a t r e s u l t e d i n s e v e r a l s u r g e r i e s and many months h o s p i t a l i z a t i o n a f t e r my  graduation.  I had wanted v e r y much t o be a d o c t o r , t o take up arms a g a i n s t some o f the d i s e a s e s I had seen i n  212 hospital.  I s t a r t e d u n i v e r s i t y t a k i n g pre-med courses  w i t h the f u l l who  i n t e n t i o n of f o o l i n g a l l of the  had deemed a medical c a r e e r i m p o s s i b l e .  naysayers But  e v e n t u a l l y I came t o r e a l i z e t h a t I would f e e l s i l l y s a y i n g t o one of my "excuse me, i n my  by the man  p a t i e n t s , f o r example,  but c o u l d you h e l p me put t h i s  ears?". who  In any case, my was  pretty  t o become my  stethoscope  a t t e n t i o n s were d i v e r t e d husband.  We married two weeks a f t e r my  university  g r a d u a t i o n and I spent a year t r y i n g t o be a t r a d i t i o n a l stay-at-home w i f e , a r o l e f o r which I am miserably i l l - s u i t e d .  At the end of t h a t year I  e n r o l l e d i n t e a c h e r t r a i n i n g , determined the house and put my elementary  t a l e n t s t o use.  t o get out of  I taught  s c h o o l f o r t h r e e years a f t e r t h a t and l o v e d  every minute of i t . I t was  d u r i n g t h i s time t h a t I s t a r t e d t o see t h a t  my d i s a b i l i t y c o u l d be a t e a c h i n g t o o l ; the f a c t t h a t I was  a person w i t h a d i s a b i l i t y , working l i k e any  other  person, would t e a c h the c h i l d r e n something about disability,  I hoped, and would h e l p them f e e l  comfortable around people w i t h d i s a b i l i t i e s .  Of  course  I answered the c h i l d r e n ' s q u e s t i o n s when they came up,  213 but my  approach was  simply  l i v i n g with i t .  to  f e e l t h a t my  good  one  of " n o r m a l i z i n g " d i s a b i l i t y I guess t h i s was  experience  by  when I s t a r t e d  of a r t h r i t i s c o u l d be put  to  use. Meanwhile my  marriage was  because I d i d n ' t l o v e my  very d i f f i c u l t ,  not  husband or because he was  a  j e r k , but because of a l l the t h i n g s t h a t go along  with  disability.  own  My  movements and my well.  a r t h r i t i s c o n s t r a i n e d not o n l y my own  possibilities,  R e l a t i o n s between my  i t hindered h i s as  husband and my  family  became s t r a i n e d because he f e l t t h a t they were c r i t i c a l of him,  t h a t they b e l i e v e d he was  enough job of c a r i n g f o r me.  not doing a good  He resented what he  saw  as the i n t r u s i o n of home support workers i n t o our home, y e t he had  f a r too much on h i s own  everything himself.  plate to  Though I f e e l t h a t I can handle  the e f f e c t s t h a t a r t h r i t i s has on me,  I feel  sorrow f o r the e f f e c t i t has had on him. d i f f i c u l t i e s t h a t he has experienced source of my So although  stopped s a y i n g "why  f i n d myself s a y i n g "why  him?".  great  The  have become the  g r e a t e s t r e g r e t about having I've  do  me?",  arthritis. I sometimes  214 Two other h e a l t h c r i s e s have compounded t h e difficulties ago  presented  by my a r t h r i t i s .  I was h o s p i t a l i z e d f o r p r e s s u r e  sitting  t o o long i n my wheelchair.  About 5 years  sores caused by This  h o s p i t a l i z a t i o n l a s t e d n e a r l y a year and i n v o l v e d t h e most horrendous o f c o n d i t i o n s : I had 7 o p e r a t i o n s , and had t o s t a y i n a f l u i d i z e d sand bed f o r over 6 months, not even having t h e head o f my bed r a i s e d , l e t alone g e t t i n g out o f bed.  I c o u l d not e a t by myself,  the bathroom, o r have a shower.  go t o  I c o u l d not h o l d a  book t o read and I c o u l d b a r e l y see over t h e ledge o f the bed.  S e v e r a l b i g l i f e events passed me by as I l a y  t h e r e , i n c l u d i n g my f a t h e r ' s h e a r t a t t a c k and my beloved b r o t h e r ' s wedding.  When, a f t e r many months, I  was f i n a l l y allowed t o s i t up, i t was o n l y f o r one minute, 3 times a day. G r a d u a l l y t h e l e n g t h o f time was extended, f i r s t  t o 5 minutes a t a time, then 10.  A f t e r 3 months o r so I had progressed  t o the point  where I c o u l d s i t up f o r 4 hours a t a time.  I fully  expected t h a t my time-up would be extended u n t i l I c o u l d s i t as long as I wanted.  J u s t b e f o r e I was  r e l e a s e d from h o s p i t a l my p l a s t i c surgeon t o l d me t h a t was i t , t h a t f o r t h e r e s t o f my l i f e  I would be  215  c o n s t r a i n e d by having t o l a y down every 4 hours. devastated; i t was l i k e another e q u a l l y disability.  I was  large  I wondered how I would ever h o l d a job, go  t o s c h o o l , o r go on a t r i p .  Even going on a one-day  workshop would be almost i m p o s s i b l e . The o t h e r medical c r i s i s happened 3 years ago. Doctors had known f o r some time t h a t my a o r t i c v a l v e had been l e a k i n g v e r y b a d l y , but t h e i r a t t e n t i o n l a p s e d and a c r i t i c a l echocardiogram was not read, and my h e a r t f a i l e d completely.  One n i g h t I found myself  v i r t u a l l y unable t o breathe, and f e e l i n g as though I were going t o pass out. department  I went t o the emergency  and my d i s t r e s s was so apparent t h a t I was  taken i n and hooked up t o machines b e f o r e they even knew my name.  I a r r e s t e d w i t h i n minutes, and by some  m i r a c l e was r e s c u s i t a t e d .  The d o c t o r i n t h e ICU t o l d  t h a t my h e a r t was so badly damaged t h a t I would n o t survive surgery.  Very c o l d l y she t o l d me "we a l l have  t o d i e and y o u ' l l j u s t have t o accept i t " . accept i t ;  I didn't  I found a surgeon who was w i l l i n g t o operate  and the s u r g e r y d i d wonders. I d e s c r i b e these two medical c r i s e s because I t h i n k t h a t e i t h e r one o f them would have provoked a  216 "why me?" response i n most people.  But I f e e l I have  p r e t t y much r e s o l v e d t h i s q u e s t i o n ,  not j u s t w i t h  r e s p e c t t o my a r t h r i t i s , but with r e s p e c t t o other t h i n g s t h a t happen t o me as w e l l . t h a t my r e s o l u t i o n o f t h i s q u e s t i o n  (I must say, though has t o do w i t h  t h i n g s t h a t happen t o me; I don't t h i n k t h a t i t would apply I've  i f something were t o happen t o someone I love.) come t o the c o n c l u s i o n t h a t t h e answer t o t h e  question  "why me?" i s i n a c c e s s i b l e t o us, t h a t i t i s  r e a l l y f r u i t l e s s t o ask i t . But a t t h e same time I t r y t o l i v e as i f t h e r e were a d i v i n e purpose t o a l l o f this.  By doing t h i s I am c o n s t a n t l y focused  on how I  might t u r n my experience t o good. T h i s approach guides me always i n the c h o i c e s I make i n my l i f e .  that  A t t h e same time the importance o f  p h y s i c a l and p s y c h o l o g i c a l i n f l u e n c e s r i s e s and f a l l s with d i f f e r e n t observations  and as d i f f e r e n t p i e c e s o f  information  A t t h e moment I am  come t o l i g h t .  intensely i n t e r e s t e d i n the possible genetic o r i g i n s of my a r t h r i t i s .  In the past when people would ask me i f  I had a r t h r i t i s i n my f a m i l y I would say no.  But i n  the l a s t few years, two o f my s i s t e r s have been diagnosed with lupus a n t i c o a g u l a n t ,  a clotting  disorder  217 t h a t i s o f t e n seen i n people with lupus, a d i s e a s e closely related to a r t h r i t i s .  My grandmother had  lupus, and some r e c e n t correspondence with a l o n g - l o s t c o u s i n has r e v e a l e d t h a t she has had m i s c a r r i a g e s t h a t might have been a s s o c i a t e d with lupus  anticoagulant,  t h a t h e r s i s t e r has a r t h r i t i s , and t h a t h e r f a t h e r has lupus.  I f i n d myself  so i n t r i g u e d with  these  d i s c o v e r i e s that I a c t u a l l y search the i n t e r n e t f o r s c i e n t i s t s doing r e s e a r c h i n t h e area, i n case  they  c o u l d make use o f t h e i n f o r m a t i o n . The development o f my c a u s a l model i s q u i t e c o n s i s t e n t with t h e p a t t e r n o f development o f my c o i n v e s t i g a t o r ' s c a u s a l models.  Yet b e f o r e I undertook  t h i s study I was not conscious o f t h e way my own model had developed.  I saw t h e p a t t e r n i n my own model o n l y  a f t e r I had seen i t i n t h e models o f my c o investigators. template  So r a t h e r than u s i n g my own model as a  with which t o c o n s t r u c t t h e models o f t h e c o -  i n v e s t i g a t o r s , the opposite occurred. helped me understand  my own.  Their stories  Appendix C - Interview P r o t o c o l F i r s t interview 218  [I began by i n t r o d u c i n g myself and r e v i e w i n g the consent form w i t h c o - i n v e s t i g a t o r s . Then I i n i t i a t e d the s t o r y t e l l i n g by saying:] I am d o i n g a study t o understand the ways i n which people make sense out of the f a c t t h a t they have a r t h r i t i s . I wonder i f you c o u l d t e l l me about the experience of your arthritis. When I say the "experience of your a r t h r i t i s " I am not j u s t t a l k i n g about your medical h i s t o r y , although t h a t i s a p a r t of i t . I'd l i k e you t o t e l l about your a r t h r i t i s as though you were t e l l i n g a s t o r y w i t h a b e g i n n i n g , a middle, and an end. While t e l l i n g your s t o r y , t r y t o remember as many d e t a i l s as you can about what you were t h i n k i n g , f e e l i n g , and doing a t d i f f e r e n t p o i n t s i n time. Any q u e s t i o n s ?  Second i n t e r v i e w [Second and subsequent i n t e r v i e w s were used t o f i l l i n d e t a i l s t h a t were not forthcoming as respondents t o l d t h e i r s t o r i e s i n the f i r s t i n t e r v i e w s , and t o c l a r i f y vague o r ambiguous statements. A f t e r r e v i e w i n g the t r a n s c r i p t s o r the tapes from the f i r s t i n t e r v i e w s , I asked q u e s t i o n s such as these:] Why  do you t h i n k you have a r t h r i t i s don't)?  Did  you ever ask "why  Did  you ever f e e l l i k e you were b e i n g punished f o r something? Did anyone ever suggest t h i s t o you as a p o s s i b i l i t y ?  Is  me?"  (when so many o t h e r people  What d i d you  conclude?  r e l i g i o n important t o you?  Do you t h i n k t h a t , i n g e n e r a l , t h a t l i f e i s f a i r , t h a t people get what they deserve and deserve what they get? When you were growing up, how d i d your f a m i l y d e a l w i t h s u f f e r i n g ? Has t h a t c a r r i e d over i n t o the way you d e a l w i t h s u f f e r i n g as an a d u l t ? What k i n d of g o a l s , v a l u e s , and p r i o r i t i e s d i d you have b e f o r e you got a r t h r i t i s ? How have these changed? Do you t h i n k you have gained a n y t h i n g because of your Has your sense of meaning i n l i f e changed?  arthritis?  In what ways?  tr  1  HI  tr  h fD  » It O 3  I  a HP> KQ 3 o tn Htn  W P> o a Ml  ci a  CO  > B) iQ 3 0 tn Hin  0 3" 0 ho  1  H-  tn 3'. rt h tn fD H- co 0 tn P) 1 hPJ  3  rr  03  nd cal  of H  cr  3 rt H-  c  tn fD  O  3 >a TJ tn tn CT rt •< •< n O tn fD ta 3* HCQ O n p) o p. cu O 3 pj a  3 fl) M H HfD a  3 H a fD c ff 3" 3 ft fD  fD tn tn 3 fD tn tn tn  <J . fD  H-  o < fD M  rt P) t) tn  1  a  a H fD pj  W  rr rt  tHi 3 p)  P>  m fD fD  fD  0) CQ CD CD  Ul  tn ,Q O C 3' HO rt O tn  HHi  T3 MiTS s P> o e s; tn M 3 ff rt H - I < tn tn CO I - Hcr 3 H- 3 3 fD Mi tn fD •<> fD 3 = O rt Mi  fD 3 fD rt Hn tn  >Q d  rt O CL O  rt 3fD rt  O H >< M3  3 fD CU  a.  fD T3 H (D tn tn HO 3  a ff PI  6T3  3 iQ fD tn  fD 3 riper  *<  a O 3 . fD  s H O 3  Mi HM H3 rt iQ ff tn  c a 3 o rt iQ fD rt t-t fD >C h-* P> O fD a  pi 3 (D  •o H 0 •o 0 tn fD a  I  HHi H-  3 fD  rt ff Pi  rt H B> B> rt fD  fD  hfD  1  Hi (D  rt H-  fD 3  fD O P> H O  P> 3 a o 3 fD  H3  fD  ff  HTS o  I CO H-  O  n o  Mi fD  3  fD  rt f3" DM 3  O tn 3- 3 pi rt P) o CL rt 3* fD fl) fD H n H  fD  tr Hh fD a o 3 fD  220  Appendix E: O u t l i n e s o f t h e c a u s a l models There i s an i m p l i e d t i m e l i n e down t h e l e f t - h a n d s i d e o f each o f these pages. These o u t l i n e s show: 1.  The elements o f the c a u s a l models and the order i n  which they were 2.  incorporated;  That sometimes elements i n t h e " i n f l u e n c e s "  w i l l appear i n the "causes" column  later  columns  i n the  chronology, showing t h a t some o f t h e c o - i n v e s t i g a t o r s came t o b e l i e v e t h a t t h i n g s t h a t c o u l d i n f l u e n c e the severity of t h e i r  a r t h r i t i s might have been  for  i n i t i a t i n g i t i n the f i r s t  3.  That causes, once i n c o r p o r a t e d ,  responsible  place; a r e seldom  rejected; 4.  That causes r e j e c t e d can become cause  incorporated;  and 5.  That t h e i n c o r p o r a t i o n o f many o f the elements can  be t i e d t o l i f e events.  Diana Age: 53 Diagnosis: R A , 1974 Culture: English Year  D  Life  Events  X 1961  P r e d i a g ..n o  111! X  1972  III! "b.  111! §§||  iii lit! 197 4  111!  ||| e  Causes incorporated i n t o model  Influences incorporated i n t o model  Causes rejected  positive thinking  no family history  p a i n on kneeling  chest pain, possibly associated with small joints joining ribs to sternum bir bio chi of  t h of only logical ld - flareup symptoms  moved f r o m England t o C a n a d a - new doctor, correct diagnosis  u m '"a"" t o I d  stress -d i d not want t o be a m o t h e r , financial struggles accepted that R.A. i s a disease of unknown etiology combination of having R.A. i n h e r "system" (physical) , plus stress of newborn child  a r t h r i t X s  221  severe disability  "why me?" rejection of God "guirk of fate"  positive thinking  Marlene  222  Age: 47 Diagnosis: RA, 1 9 7 8 Culture: English Canadian  Year  D X  Life  Events  Causes incorporated i n t o model  Influences incorporated i n t o model  Causes rejected  "traumatic" 30th birthday  1978  r h e  u m  symptoms RA f a c t o r appears-  a t o i  111 r i t i  heredity (physical) stress of being only military s i n g l e mother  111 111 111 ill  heredity  appear  weather willpower stress of trying to conceal physical problems  workplace stress demotion t o menial, parttime p o s i t i o n  III  pain  severe  "why Luck  me?":  Sophie Age: 79 Diagnosis: RA, 1 9 6 8 Culture: English Canadian  Year  D X  Life  1968  R h e u m a t o i d  joint  Events  Causes incorporated i n t o model  cortisone injections  flareups  vigourous physiotherapy bedrest move t o c o o l e r West C o a s t f r o m Quebec  heat  A  liii III  physical: overdoing i t in tennis  h  111 L t  III III 1980  Influences incorporated i n t o model  stress: marital problems separated husband  excessive physical activity  change i n barometric pressure  from "why me?": chance  early treatment  Causes Rejected  Tamara Age: 51 Diagnosis: RA, 1 9 8 0 Culture: English Canadian  Year  D X  Life  1980  Events  woke up "completely paralyzed" diagnosed with polyarthritis  II!  learned about Edgar Cayce  h  lit u m a t o i  fibromyalgia diagnosed  III  Causes incorporated i n t o model physical heredity, cold weather, athletic injuries  psychological and p h y s i c a l stress r e l a t e d to c h i l c a r e , school, and work RA i s a "worrydisease"  :::C3;:  : : :  : :  Hi ill h  became d e v o t e e of Eckankar  "why me?" retribution for sins of past life  revelation  learned specific s i n for which she is paying  III! i  |1| 111  near-death experience  Influences incorporated i n t o model  lack of estrogen  stress  Causes rej ected  Gwen Age: 63 Diagnosis: RA, 1 9 8 0 Culture: Welsh  Year  1975  D X  Life  P r e  alcoholic, promiscuous husband  d l a  initiated then dropped divorce proceedings  g n o s  husband left for another woman  :^iS  Hi  Events  Influences incorporated i n t o model  f o r e c l o s u r e on f a m i l y home symptoms  appear physical exertion  1980  IS::: d i a g n o s i s  1 11 111 11! Ill m  ill  husband i n and out o f l i f e  i d  1985  Causes incorporated i n t o model  A r t h r i t I  husband left once and f o r all  physical: menopause  physical: abuse from husband  stress: family problems "why me?": "someone watching over me"  " f o r some kinds of arthritis nothing works"  Causes rejected  Madeleine Age: 4 4 Diagnosis: RA, 1985 Culture: French-Canadian Year  D X  Life  Events  P r e  disabled daughter camping  1985  trip  diagnosis  + R h e  Causes incorporated i n t o model  mosguito bite, injury physical: heredity  daughter's diagnosis with Cockayne's Disease  ifti fill  o n l y one medication  a  111 lit! d a u g h t e r ' s i  111 111 r t h r i  condition degenerating, mother intensely involved i n her• care  worrying  I s 1991  Influences incorporated i n t o model  daughter  dies  Madeleine becomes more involved i n c a r e o f h e r own illness  s t r e s s was the trigger "why me?" no a n s w e r  Causes rej ected  Stacey Age: 44 Diagnosis: PA, 1986 Culture: English Canadian  Year  D X  Life  Events  1986  P r e  symptoms father  227  Causes incorporated i n t o model  appear  very i l l  Influences incorporated i n t o model  physical: very physical job viral infection? hepatitis vaccine?  1987  diagnosis E> s father dies  "why me?": punishment for sins of past life?  lit  !!§ i a t i  1989  lit A r  ii  h r i t i s  1993  1995  B  only able to work o f f and on because very sick had t o q u i t work altogether involvement cult  stress  i n  poverty  admission to G.F. Strong  stress: work and father's i l l n e s s and death  "why me?": something t o learn hepatitis vaccine  B  Causes rejected  Caroline Age: 32 Diagnosis: JRA, 1977 Culture: First Nations  Year  D X  Life  1977  J u V e n 1 e  spinal  1980  Events  taps  symptoms appear; diagnosis married daughter  1984  R h e u m in i i  born  G.F. S t r o n g admission  Causes incorporated i n t o model  Influences incorporated i n t o model  physical hardship mental stress  "why me?": punishment for sins i n past life  physical genetics  pregnancy  overuse  i  ||  acidy  A 111:: d e p r e s s i o n 111  11r  physical fillings teeth?  foods  i n  a.  illi s 1991  G.F. S t r o n g , surgeries  infection after root canal  Causes rejected  Lorna Age: 44 Diagnosis: RA, 1 9 7 0 Culture: F i r s t Nations  Year  D X  Life  1970  R h e u m a t o l d  birth of third c h i l d , symptoms appear  1975  1977  A r t  111 Iii ill  X  III  Events  Influences incorporated. i n t o model  physical: working i n inclement conditions stress: family stress  Rufus  Gibbs "fighting spirit"  b i r t h of youngest couldn't for her  childcare  observes r i s i n g i n c i d e n c e o f RA amongst n a t i v e people  witnessed s h o o t i n g - PTSD 1991  Causes incorporated i n t o model  "why me?": higher purpose? genetics? physical: change i n food stress of l i v i n g on reservation and l o s s o f native identity  "why me?": everything has a p u r p o s e  Causes rej ected  Marilyn Age: 31 Diagnosis: RA, 1 9 9 1 Culture: English Canadian  Year  D X  Life  Events  1991  R h e u m a t o i  working i n s h i p p i n g and receiving, fingers swelled  Causes incorporated i n t o model  Influences incorporated i n t o model  physical: overuse  diagnosis  ri tried to return A t o work b u t 111 c o u l d n ' t  exercise  11  rest  11  medications  |§| L c r y i n g and loneliness 1  Iff  Iii  "why me?": punishment  emotional stress  Causes rejected  Jess Age: 25 Diagnosis: RA, 1990 Culture: Sikh-Canadian  Year  Life  Events.  1990  symptoms appear;return t o Canada; hospitalization; diagnosis return to L o n d o n ; no j o b or apartment  231  Causes incorporated i n t o model not enough exercise? stress  Influences incorporated i n t o model  physical: foods stress  moved b a c k Canada  to  physical: " i n your system" and i s triggered  "why me?": surfaces periodically and i s pushed away; no answer  Causes rej ected  Robin Age: 34 Diagnosis: JRA, 1962 Culture: English Canadian  Year  D X  Life  1962  P r e  fever, joints  1963  J u V e n i  diagnosis  ill  Events  swollen  Causes incorporated i n t o model (parents) chicken pox? strep throat? DPT v a c c i n e ?  started school, looked disabled  working hard b e i n g good  R  ill  "why me?": no a n s w e r  e  Iii 1975  Strong, . m. G.F. a surgery  111 o started I  college  111 ill  1988  r t h r X t i s  Causes rejected  Influences incorporated i n t o model  stress  physical fault i n the immune system, may be g e n e t i c  started longterm relationship stress of bad relationship relationship ends "why luck  me?":  /  Appendix F Summary o f causes and i n f l u e n c e s c i t e d by c o - i n v e s t i g a t o r s 233 Physical  causes  From t h e o u t s i d e 1.  TB v a c c i n a t i o n - Tamara  2.  H e p a t i t i s B v a c c i n e - Stacey  3.  DPT v a c c i n e - R o b i n s  4.  v i r u s , c h i c k e n pox - Robin's  f  virus, tropical  parents parents  (unknown) - Stacey  5.  bacterium, s t r e p t h r o a t - Robin's  parents  6.  p h y s i c a l h a r d s h i p , medical t e s t i n g - C a r o l i n e p h y s i c a l h a r d s h i p , abuse - Gwen  7.  f i l l i n g s i n teeth - Caroline  Constitutional 1.  g e n e t i c - Marlene, Madeleine,  C a r o l i n e , Tamara, (Robin),  (Lorna) 2.  " i n your system"  - Diana, Robin, J e s s  The way you a r e 1.  menopause - Gwen  2.  overweight  - Marlene  What you a r e doing 1.  c h i l d b e a r i n g - Lorna,  Diana  2.  working t o o hard / r e p e t i t i v e motion  / injury - Marilyn,  Stacey, Gwen, Tamara, Sophie 3.  working  i n inclement c o n d i t i o n s - Lorna, Tamara  Stress Long-term / c h r o n i c 1.  f a m i l y / m a r i t a l d y s f u n c t i o n - Lorna,  234 Diana, Sophie,  Gwen 2.  d i f f i c u l t f a m i l y s i t u a t i o n - Madeleine, Marlene, Tamara  3.  work s t r e s s - Stacey, J e s s  4.  l o s s o f c u l t u r e / i d e n t i t y - Lorna  Events 1.  unwanted c h i l d - Diana  2.  c h i l d ' s d i a g n o s i s - Madeleine  3.  f a t h e r ' s i l l n e s s and death - Stacey  "Why me?" Chance 1.  l u c k - Marlene, Robin  2.  q u i r k o f f a t e - Diana  3.  chance - Sophie  Punishment 1.  f o r wrongdoing - M a r i l y n  2.  f o r s i n s o f past l i f e - Tamara, C a r o l i n e , (Stacey)  Eventual  / u l t i m a t e good  1.  e v e r y t h i n g has a purpose - Lorna  2.  something t o l e a r n - Stacey  3.  someone watching over me - Gwen  No answer 1.  no answer and angry - Madeleine  2.  no answer and OK - J e s s  I n f l u e n c e s - t h i n g s t h a t make a r t h r i t i s b e t t e r or worse Disposition / personality 235 1.  anger - Tamara  2.  w i l l p o w e r - Lorna, Marlene, Robin, Tamara  3.  p o s i t i v e t h i n k i n g - M a r i l y n , Diana  4.  b e i n g good / t r y i n g hard - Robin  Stress Robin, Tamara, Stacey, M a r i l y n , Marlene, J e s s Timing 1.  recency of d i a g n o s i s - Diana,  2.  e a r l y treatment - Sophie  Marlene  Hormonal 1.  pregnancy - C a r o l i n e  2.  l a c k of estrogen - Tamara  Treatment 1.  e x e r c i s e - M a r i l y n , Sophie  2.  r e s t - M a r i l y n , Sophie  3.  medications - M a r i l y n , Sophie  Environmental 1.  weather - Marlene  2.  heat - Sophie  3.  changes i n barometric p r e s s u r e - Sophie  Other 1.  overuse - C a r o l i n e ,  Sophie  2.  foods - C a r o l i n e , J e s s  3.  infection - Caroline  

Cite

Citation Scheme:

        

Citations by CSL (citeproc-js)

Usage Statistics

Share

Embed

Customize your widget with the following options, then copy and paste the code below into the HTML of your page to embed this item in your website.
                        
                            <div id="ubcOpenCollectionsWidgetDisplay">
                            <script id="ubcOpenCollectionsWidget"
                            src="{[{embed.src}]}"
                            data-item="{[{embed.item}]}"
                            data-collection="{[{embed.collection}]}"
                            data-metadata="{[{embed.showMetadata}]}"
                            data-width="{[{embed.width}]}"
                            async >
                            </script>
                            </div>
                        
                    
IIIF logo Our image viewer uses the IIIF 2.0 standard. To load this item in other compatible viewers, use this url:
http://iiif.library.ubc.ca/presentation/dsp.831.1-0054767/manifest

Comment

Related Items