Autobiography of a Disease

241 Pages·2017·2.046 MB·English

by  Patrick Anderson

AUTOBIOGRAPHY OF A DISEASE
Autobiography of a Disease documents, in experimental form, the experience of
extended life- threatening illness in contemporary US hospitals and clinics. The
narrative is based primarily on the author’s sudden and catastrophic collapse into
a coma and long hospitalization thirteen years ago; but it has also been crafted
from twelve years of research on the history of microbiology, literary represen-
tations of illness and medical treatment, cultural analysis of MRSA in the
popular press, and extended autoethnographic work on medicalization.
An experiment in form, the book blends the genres of storytelling, histori-
ography, ethnography, and memoir. Unlike most medical memoirs, told from
the perspective of the human patient, Autobiography of a Disease is told from the
perspective of a bacterial cluster. This orientation is intended to represent the
distribution of perspectives on illness, disability, and pain across subjective cent-
ers—from patient to monitoring machine, from body to cell, from caregiver to
cared- for—and thus makes sense of illness only in a social context.
Patrick Anderson is Associate Professor in the departments of Communica-
tion, Ethnic Studies, and Critical Gender Studies at the University of California,
San Diego. He is the author of So Much Wasted and the co- editor (with Jisha
Menon) of Violence Performed.
Writing Lives
Ethnographic Narratives
Series Editors: Arthur P. Bochner, Carolyn Ellis and Tony E. Adams
University of South Florida and Northeastern Illinois University
Writing Lives: Ethnographic Narratives publishes narrative representations of qualit-
ative research projects. The series editors seek manuscripts that blur the bound-
aries between humanities and social sciences. We encourage novel and evocative
forms of expressing concrete lived experience, including autoethnographic, lit-
erary, poetic, artistic, visual, performative, critical, multi-v oiced, conversational,
and co- constructed representations. We are interested in ethnographic narratives
that depict local stories; employ literary modes of scene setting, dialogue, char-
acter development, and unfolding action; and include the author’s critical reflec-
tions on the research and writing process, such as research ethics, alternative
modes of inquiry and representation, reflexivity, and evocative storytelling. Pro-
posals and manuscripts should be directed to [email protected], [email protected]
or [email protected]
Other volumes in this series include:
Evocative Autoethnography Collaborative and Indigenous
Writing Lives and Telling Stories Mental Health Therapy
Arthur P. Bochner and Carolyn Ellis Tataihono – Stories of Maori
Healing and Psychiatry
Bullied Wiremu NiaNia, Allister Bush and
Tales of Torment, Identity, and David Epston
Youth
Keith Berry
For a full list of titles in this series, please visit: www.routledge.com/Writing-
Lives-Ethnographic- Narratives/book- series/WLEN
AUTOBIOGRAPHY OF
A DISEASE
Patrick Anderson
First published 2017
by Routledge
711 Third Avenue, New York, NY 10017
and by Routledge
2 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN
Routledge is an imprint of the Taylor & Francis Group, an informa business
© 2017 Taylor & Francis
The right of Patrick Anderson to be identified as author of this work has
been asserted by him in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced
or utilized in any form or by any electronic, mechanical, or other means,
now known or hereafter invented, including photocopying and
recording, or in any information storage or retrieval system, without
permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identification and
explanation without intent to infringe.
Library of Congress Cataloging in Publication Data
Names: Anderson, Patrick, 1974– author.
Title: Autobiography of a disease / Patrick Anderson.
Description: New York, NY : Routledge, 2017. | Series: Writing lives:
ethnographic narratives
Identifiers: LCCN 2016058684| ISBN 9781138744486 (hbk) |
ISBN 9781138744509 (pbk) | ISBN 9781315180991 (ebk)
Subjects: LCSH: Staphylococcus aureus infections. | Methicillin
resistance.
Classification: LCC RC116.S8 A53 2017 | DDC 616.9/2–dc23
LC record available at https://lccn.loc.gov/2016058684
ISBN: 978-1-138-74448-6 (hbk)
ISBN: 978-1-138-74450-9 (pbk)
ISBN: 978-1-315-18099-1 (ebk)
Typeset in Bembo
by Wearset Ltd, Boldon, Tyne and Wear
For my mother,
and mothers everywhere,
in whatever form they take.
And for Kaja.
Identity exists where the Complication and Unraveling are the same.
Aristotle, The Poetics
This then is life,
Here is what has come to the surface
after so many throes and convulsions.
Walt Whitman, Leaves of Grass
CONTENTS
Foreword viii
Prelude 1
Part I 4
Part II 21
Part III 49
Part IV 85
Part V 121
Part VI 168
Coda 215
Afterword 218
Acknowledgments 223
Index 225
FOREWORD
Sometime during the fall of 2003—I’m still not sure exactly when—I fell sud-
denly and violently ill. Within hours, I was unconscious. And when I awoke—
I’m still not sure exactly when—the world, and my place in it, had dramatically
changed. Over the course of the year and more that followed, as a wide variety
of doctors and nurses sought first to diagnose and then to prognosticate over the
cause of my collapse, I found myself deeply immersed in an accidental ethno-
graphy of what goes by the name of “care” in contemporary US medical prac-
tice: endless imaging technologies, documentary protocols, interventional
procedures and surgeries, occupational training, independent living schemes,
and countless other social practices gathered under the headings “convales-
cence” and “recovery.” Trained both as an anthropologist and as a performance
scholar, I slowly realized that, like it or not, I had stumbled into what became
an extraordinarily intricate and complex research field: the practice of dying, or
nearly, and getting “well.”
But awakening in the midst of an illness that treads precariously at the preci-
pice of mortality is never a singular event, nor is it linear in its progression.
Over the course of that year spent in hospitals, my apprehension of what was
happening to and around me was shaped and distorted by fluctuating states of
consciousness, pain drugs and anesthetics, dreams and hallucinations, rapid
cycles of recovery and deterioration, and by the shifting tides of interactions
with the many people entrusted with caring for me. I wanted to know and
understand what was happening—both for my own sake, and out of anthropo-
logical curiosity—but I could not depend upon my own capacity for knowing
or understanding. What in one moment might seem clear would, on the
following day or with the next procedure, dissemble itself into fiction or myth.
I looked to others—“interlocutors,” in the anthropological vernacular—to
Foreword ix
explain what was happening, what had happened, what it meant. I learned, as
Tim Parks has written, that “every illness is a narrative,” and that “what matters
is the version you tell yourself.”1
This book is about illness. But it is also about how we make sense of
being- ill. As an ethnography, it is founded upon multiple kinds of research over
the last ten years: archival study of the origins of microbiology, diagnosis, and
treatment protocols; reviews of medical, popular, and media literature about
drug- resistant bacterial strains; exhaustive reading and re- reading of (my own)
patient records and medical files; and, of course, interviews with medical profes-
sionals, patients, and caregivers. But it also acknowledges that understanding the
experience of illness exceeds even these dependable academic methodologies.
And so this book takes something of a radical leap: it distributes the agency of
narration—the power to describe—not just to the many human actors involved
in treatment and care- taking, but also to the non-s entient beings involved in the
practice of being- ill. How do microbes understand the human diseases they
sometimes occasion? How does a discarded fragment of human bone tissue
remember (or mourn) its former function? How do damaged retinal tissue and
visual receptors in the brain make sense of the fractured images they collect?
Can an EKG take pleasure in the rhythms it records?
This book, then, understands illness not as a patient’s monologue or biogra-
phy, but as a profoundly social, richly durational, and multiply perspectival
encounter. It seeks to describe how illness makes meaning of the world even as
it threatens to dissemble the world in which it occurs. The structure of the nar-
rative that follows is episodic and, at times, disjointed; but it nonetheless follows
a timeline of illness as experienced by those who were gathered in its sweep.
The soul of its intent—to describe and understand a series of events that
occurred in a particular sociocultural context—overlaps with recent trends in a
number of academic discourses (including autoethnography, medical humani-
ties, distributed cognition, disability studies, and performance studies). But it
also exceeds those designations, seeking to embrace the constant stream of diso-
rientation, misrecognition, and radical undoing that occupies the very heart of
illness’s ontology; it is to such crises that push the limits of knowing and know-
ability that this book bears witness.
Note
1 Tim Parks, Teach Us to Sit Still: A Skeptic’s Search for Health and Healing (New York:
Rodale, 2012), 27.