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a fa m i ly h i s t o r y o f i l l n e s s
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memory as medicine
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Brett L. Walker
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All rights reserved. No part of this publication may be reproduced or
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transmitted in any form or by any means, electronic or mechanical,
including photocopy, recording, or any information storage or retrieval
system, without permission in writing from the publisher.
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university of washington press
www.washington.edu/uwpress gt
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library of congress cataloging-in-publication data
Names: Walker, Brett L., 1967– author.
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Title: A family history of illness : memory as medicine / Brett L. Walker.
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acid-free paper)
Subjects: lcsh: Walker, Brett L., 1967—Health. | Walker, Brett L., 1967—
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the United States at some point . . .
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Acknowledgments ix
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prologue. Nightmares 3
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chapter 1. Memories 15
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chapter 2. Immunodeficiencies 40
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chapter 3. Modalities 65
chapter 4. Proteins 96
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chapter 5. Phenotypes 132
chapter 6. Histories 165
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epilogue. Legacies 204
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Notes 221
Bibliography 241
Index 257
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ackn ow l e dg me nt s
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of History at the time, I told him about the project and what I
was trying to accomplish with it. I had struggled with how to
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your title,” he said. Indeed, that became the title, as well as the
central theme of the book. I still have the piece of tablecloth,
and now I have this book, in part because of David’s support
and suggestions.
I learned a great deal during my year in the Boston area, and
I owe the opportunity to Ian Miller, my friend and colleague.
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x acknowledgments
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including a helpful research stipend.
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On my return to Bozeman, colleagues, friends, and family
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read my fledgling manuscript and offered valuable insights.
LaTrelle Scherffius, my wife and partner, read an early draft
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of the manuscript and offered many important editorial sugges-
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tions and inspirational support, as did my father, Nelson Walker.
My mother, Linda Walker, gave endless support and watched
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the Reese Creek home front while we lived in Cambridge. My
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read the manuscript for the press and transformed the book with
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many conversations about my Montana family’s history, usually
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at Taco Treat. I also grilled my parents and other family mem-
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bers about family-related questions for years as I gathered infor-
mation for this project, including quizzing my brother, Aaron,
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about his memories. I discovered aspects of my family history
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during this project that proved a little jarring, but everybody
kept a brave face.
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Many people supported me and nurtured me as I recovered
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Ben Swartz. I’ll always remember the heroic efforts of the team
at the University of Minnesota’s Health Center, including those
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Ash’s Okinawan Karate was a gem, and I owe Lisa and Brian a
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prologue
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Nightmares
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turned my head to look out a window near the bed—I saw only
the inky black of the night sky.
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4 prologue
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structure, and a blizzard swirled in the light. The gusting winds
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came off a nearby frozen river. The snow, illuminated in the
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conical beams projected by the floodlights, made brilliant
white streaks before vanishing into the cover of darkness. I was
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momentarily hypnotized, swept away in thought.
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The floodlights came to represent the present, and the sur-
rounding darkness the poorly lit past—where the snow had
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come from and where it was going, into an unknown future.
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nothing stays in the present for long. Seeing all that snow
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simultaneously, another door swung open, florescent lights
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burst on, and a large male nurse entered, his eyes darting about,
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looking for the source of the commotion. The light flooded
over me like a bucket of cold water and I began to remember.
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I was in a drug-induced delirium, likely from large amounts
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of Demerol pulsing through my veins. I was at the University
of Minnesota Medical Center dying of an unstoppable case of
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pneumonia and pleural effusion (fluid between tissues that line
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the chest and lungs). The entire hallucination of snow and cold
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I write now, I can retrieve only fragments of it. The harsh fluo-
rescent lights shone accusingly on my shivering body. Embar-
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rassed, I could only muster a timid “I’m cold.” I was not doing
well and I knew it.
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a daze, but I managed to say, “Sounds good, I guess.” While
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I was being loaded into an ambulance for transfer, the same
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doctor leaned over my gurney and asked, “Have you gotten a
tattoo recently?” I shook my head no. “Are you sexually active?”
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I just stared at him, a little shy about the question. Then he
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asked, “Do you have a family history of illness?” I kept staring
at him. “A family history of illness,” I whispered back at him,
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my dry lips wrapping around the words as they slowly dissipated
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into the crowd of doctors and nurses. Little did I know then how
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drove past. The siren was deafening. “This is all because of me,”
I thought. I had never been in an ambulance before.
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each more specialized and secluded than the last, each emblem-
atic, in my delirium, of my deteriorating medical condition,
as if I were spiraling down through Dante’s concentric circles
of hell. I started out in a room with a television that buzzed
with CNN and news of the shooting of Arizona representative
Gabrielle Giffords. I was soon moved to the inner sanctum,
Nightmares 7
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ing. At first, a medical student had tried to insert the plastic
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hose, but when she stumbled a third and then fourth time, the
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observing doctor, a no-nonsense woman, ran out of patience
and took the hose herself and forcefully threaded it into my
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chest, explaining the process to the student. As a teacher myself,
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I admired her cool pedagogical acumen: I felt I could probably
perform the procedure in a pinch, had I not been so high on
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painkillers. Later, as I slowly recovered, I carried the pump with
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tank always full. “How could there possibly be any more of this
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begin to flash before my eyes in what is, I’ve been told, the
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customary manner. Instead, my family history of illness began
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to flow by in bits and pieces. I couldn’t remember anyone in
my family having had pneumonia, but I had never asked about
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family members’ health in any detail. My mother had nearly
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died from hepatitis as a little girl—I knew that. But that hardly
seemed related to my killer pneumonia. Bodies and health
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weren’t really topics in my family. Rather, our stories were
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was all over the place: I had been sick before but had always
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— · —
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I could barely move. I managed to board the plane, but once
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in Portland I immediately visited an urgent-care doctor. After a
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chest x-ray, he determined that I had early signs of pneumonia
and he gave me antibiotics. At first they worked, if slowly, and I
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recovered somewhat, but then my condition started to worsen
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once more. By the time my girlfriend and I returned to Min-
neapolis, my health was slipping away from me. By New Year’s
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Eve, I could only lie in bed and sweat, my head pounding. The
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they probably would have pulled the plug. He called for more
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globulins—were virtually nonexistent, and they ordered an
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immediate infusion of human immunoglobulins. Immuno-
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globulins are glycoprotein molecules produced by white blood
cells that serve as antibodies to fight bacterial infections, such
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as the one attacking my lungs. I had the white blood cells,
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but for some unknown reason my body had stopped produc-
ing immunoglobulins. At first, doctors suspected this absence
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might be symptomatic of blood cancer, or perhaps lymphoma.
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“There’s magic in this bag. I’ve seen it before. You’ll be just fine
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idea how long I slept, but after I woke I never allowed another
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drop of Demerol in my veins—I am convinced that the drug
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made me hallucinate on several occasions. My fever began to
subside. The immunoglobulins had worked.
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With repeated treatments, I steadily improved. Even though
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my body remained weak and vulnerable, all I wanted to do was
leave the hospital. If that meant walking up and down the halls,
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taking my IV bag and chest pump for thrice-daily walks, then
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or her how much better I felt, even if half the time I wasn’t so
sure. The night sweats in fact persisted for weeks, even after I
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lar to what millions of people face every day. Instead, this book
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is about the importance of history in understanding our bodies
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and, more broadly, our shared world. It presents a philosophy of
history that integrates the body, memory, and immunity with the
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past and present—my effort to contextualize my experience with
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this immunological disorder within my story and my family’s
story to determine if I inherited CVID or acquired it as an adult.
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The typical symptoms of CVID include chronic bacterial
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bodies but also about how those microbes may drive behavior
and physiological development in a manner that destabilizes
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tem, teaching it to tell friend from foe. They affect the devel-
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determining what person we ultimately become. If genetics
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defines the spectrum of the possible selves we might be, the
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incipient ones we inherit from our families, then it is our histo-
ries, or lifetime experiences and exposures, that determine the
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selves that we in fact are—the phenotypes, or individuals result-
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ing from the interaction of genes and the environment. Here is
another pertinent question: to what degree can historical expe-
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riences be inscribed on our genes and then made heritable to
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they seem like old film reels rapidly clicking away in our minds,
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Finally, this book explores the experiences of my family
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and the disease challenges they faced in order to make my life
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possible. It is about local threats to life, such as contagious dis-
ease outbreaks in colonial New England, and global ones, such
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as the eruption of Mount Tambora in 1815, which caused the
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“year without a summer” and killed millions around the world.
It is about memory and the health and bodily scenes I witnessed
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as a child, including potent ones of my dying grandfather. It is
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