Unreliable Bodies: A Follow‐up Twenty Years Later by a Mother and Daughter about the Impact of Illness and Disability on their Lives

• Author: Miranda Worthen,Kaethe Weingarten
• Published date: 01 March 2017
• DOI: http://doi.org/10.1111/famp.12197
• Date: 01 March 2017

Unreliable Bodies: A Follow-up Twenty Years Later

by a Mother and Daughter about the Impact of

Illness and Disability on their Lives

KAETHE WEINGARTEN*

MIRANDA WORTHEN

†

To read this article in Spanish, please see the article’s Supporting Information on Wiley Online Library

(wileyonlinelibrary.com/journal/famp).

We are a mother and daughter, both health care professionals, who offer a follow-up to

an article we published twenty years ago about the impact of each other’s ongoing , serious

medical problems on our relationship. In this article, we contribute a long-term perspective

on the differences between having an illness that is well or poorly understood by medical

professionals and the lay community. We also discuss health in the context of identity

formation and life stage, as during this interval the daughter left home, graduated college,

married, and had two children. Also in this period, the mother survived a third breast can-

cer and other life-threatening illnesses. We discuss the impact of these experiences on each

other and in other important relationships in our lives. Current discourses on daughters of

breast cancer survivors do not fit our experience and we speculate about why our story dif-

fers. We find that although we continue to contend with serious medical issues that impact

our own, each other’s, and our families’ lives, nonetheless, our lives are rich, rewarding,

and “appropriate” for our life stage. That is the news.

Keywords: Illness; Breast cancer; Life-stage; Identity; Mother–daughter relationship

Fam Proc 56:262–277, 2017

INTRODUCTION

Waking up in Maine, 3000 miles away from my daughter who is 35 weeks pregnant

with her second child, I reach for my phone to see if there is a text. No longer listen-

ing for sounds from her bedroom, wondering if she has fainted or collaps ed, I am still,

nonetheless, tethered to her unreliable body. I can only hope that her tether to me is thin-

ner than mine is to her; but I know that hers to her 3-year–old daughter is like mine was

to her.

Twenty years ago, in 1995, my daughter, Miranda Worthen, and I sat down to write a

talk for a Medical School Conference, subsequently published (Weingarten & Worthen,

1997), about the impact on each of us of the other’s medical condition. At that point, I had

been diagnosed and treated for breast cancer twice. Miranda was born with a rare genetic

disorder that can affect—and had—many organ systems. The conceptual frame of the orig-

inal article provided an analysis of the “impact of having a condition that is either poorly

or well understood” (Weingarten & Worthen, 1997; p. 41). We constructed our article

around the narrative categories of narrative coherence, narrative closure, and narrative

interdependence (Chatman, 1978). However, these terms were shortly to prove inadequate

*The Witnessing Project, Berkeley, CA.

†

Health Science & Recreation, San Jose State University, San Jose, CA.

Correspondence concerning this article should be addressed to Kaethe Weingarten, The Witnessing

Project, 2587 Hilgard Avenue, Berkeley, CA 94709. E-mail: kaethew@gmail.com

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Family Process, Vol. 56, No. 1, 2017 ©2015 Family Process Institute

doi: 10.1111/famp.12197

to the task of describing, much less accounting for, our embodied experiences. A subse-

quent article (Weingarten, 2000), drawing on several narrative schemas, was more suc-

cessful.

Each of us has had considerable feedback over the years about how helpful the original

article was to readers. Comments affirmed our hope that our writing would be considered

in the light of the long tradition of people using personal story to illuminate shared experi-

ence, such as Murray Bowen (1978). In 2011, we decided to write a follow-up article, but

our efforts were undermined by medical events in both of our lives. Medic al problems fre-

quently disrupt both of our lives and the lives of our networks of support; it is part of the

story we wish to document here. Medical crises require focused thought, planning, and

action. Stepping back and analyzing one’s emotions are a “luxury” that few can manage

when resources are required just to get one’s body through time. We have set the time

parameters of this article at 1995–2010. During these years, Kaethe was 47–63 years old

and Miranda was 16–31 years old.

Writing the original article, sitting together at the computer, talking, composing, com-

menting on the writing itself, was one of the most emotionally difficult experiences either

of us had ever had. Neither of us wanted to face the degree to which our own medical con-

ditions had impacted the other. Having now lived for 25 years with multiple life-threaten-

ing diseases, I know for certain that the most painful aspect of illness for me is the impact

—fear, worry, limitations, loss—my illness causes others. This is more unbearable to me

than any physical pain I have endured. Writing this article means I must imme rse myself

in this relational pain. Not knowing what will unfold, as the reader is similarly unsure

right now, I hope that I—that we—will feel more not less integrated by the end of this pro-

cess.

To be transparent about our process, we wrote this article as follows. I, Kaethe Wein-

garten, took the lead on the introduction and literature review. The history and response

sections were written individually and not shared with each other until they were com-

plete. By contrast, the discussion and conclusion were jointly conceptualized and written.

We did not want to influence each other’s descriptions and thus our collaborative inqui ry

began after we had completed our own story-making. I, Kaethe Weingarten, narrate our

jointly written sections.

We compare the process of writing the discussion and conclusion to the pedagogy of

emergent design. We have tried to capture both the first blush of meaning–making as

well as that honed by our respective professional disciplines, psychology and family ther-

apy for me, and psychology and public health for Miranda. The process of writing these

sections required and illustrated the very intergenerational conversation that we high-

light as a feature of our lives. What has been less present at times is richly present now, in

2015.

1

BACKGROUND

To set the scene for the literature review section that follows, a brief review of the medi-

cal history that appeared in the first article is as follows: My husband and I became par-

ents with our first child, a boy, 6 weeks before my mother died of a rare malignant tumor.

Miranda was born 33 months later, in 1979, and 9 months after my father had survived

complications from a triple bypass.

1

As with our first article, there are significant people in our lives whose support, love, expertise, and

care are crucial to both of our lives and who do not figure centrally in these pages. Fortunately, they have

not had to contend with serious medical issues for decades as we have, and it is this feature of our lives

that is our focus. Were we to focus on joy, for instance, they would appear prominently.

Fam. Proc., Vol. 56, March, 2017

WEINGARTEN & WORTHEN

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