Memory's Last Breath Read online

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  Copyright © 2017 by Gerda Saunders

  Cover design by Amanda Kain

  Cover copyright © 2017 by Hachette Book Group, Inc.

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  First ebook edition: June 2017

  All images courtesy of the author, except for the following: here Cheryl Saunders; here (top) Cheryl Saunders, adapted from the Journal of Cosmology, (5 bottom images) courtesy of Patricia Kinser; here Cheryl Saunders. Images used with permission.

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  ISBN 978-0-316-50263-4

  E3-20170504-JV-PC

  Contents

  Cover

  Title Page

  Copyright

  Dedication

  Author’s Note

  Chapter One: Telling Who I Am before I Forget

  Chapter Two: Quantum Puff Adders and Fractional Memories

  Chapter Three: The Grammar of the Disappearing Self

  Chapter Four: This Is Your Brain on the Fritz

  Chapter Five: Of Madness and Love I

  Chapter Six: Of Madness and Love II

  Chapter Seven: Makeovers in Extremis

  Chapter Eight: The Exit That Dare Not Say Its Name

  Acknowledgments

  Notes

  Newsletters

  For my made-in-America family—now too extended to name—the friends of my heart who are now “blood”

  for the Salt Lake City Saunderses: Kanye, Aliya, and Dante, and those people who transport them to visit Ouma and Oupa

  and, of course, for Peter: Your name is Rock, where elephants shelter when the heavens frown.

  Author’s Note

  When I was diagnosed with early-onset dementia just before my sixty-first birthday in 2010, I kept my hurt, anger, fear, and doubts under wraps. I had no choice. I had a job, a husband, children, grandchildren, friends. I had a life. However, there is nothing like a death sentence—in my case, the premature death of my mind—to provoke questions about life. What, actually, is memory, personality, identity? What is a self? Will I still be (have?) a self when my reason is gone? For me, the place to work out such questions has always been in writing. From that place of self-reckoning, then, came this book.

  In July 2011—nine months after my diagnosis—when I retired from my position as the associate director of the Gender Studies Program at the University of Utah, my colleagues gave me a beautiful leather-bound journal as a goodbye present. I took to jotting down notes in it about my daily misadventures—pots on the stove boiling dry, washing my hair twice in an hour, forgetting to bake a casserole I had prepared the night before. With a wink at my background in the sciences, I called my journal Dementia Field Notes: I would be an anthropologist, assigned to observe one member of a strange tribe, the Dementers. Like a true scientist, I would be objective. No whining, wailing, or gnashing of teeth. Just the facts.

  A month or two into my “objective” writing, I also started to write a personal narrative about my dementia. Objectivity be damned. I felt compelled to tell my story from the inside. Months later, the piece turned into an essay. After some tough-love editing by two of my closest friends—Shen Christenson and Kirstin Scott, both writers—I showed the essay to my husband, Peter, my children Marissa and Newton and their spouses, and a few close friends. They urged me to share the essay with others and, to my delight, demanded I write more.

  I wrote a second essay, which included summaries of neurological research into various forms of dementia. The idea that my writing might add up to a book slowly started to take shape. Two and a half years after my first Field Notes entry, I had completed three essays. I was mentally exhausted. I had little energy left to enjoy my life. My working memory—the ability to hold a small amount of info in my head while using it, such as remembering the street name and street number as I wrote down an address while someone said it on the phone—barely functioned. Neuropsychological tests showed a decline in my IQ. I began to question if writing a book was worth these losses. Was this how I wanted to spend my remaining “good years”?

  I decided to end my excursion into writing with a bang. Starting in September 2012, I mined my completed essays for passages that would add up to a stand-alone piece for publication. The result was published as “Telling Who I Am before I Forget: My Dementia” in the Winter 2013 issue of the Georgia Review (GR) and subsequently reprinted in the large-circulation online magazine Slate. That a Slate editor would even notice my essay in an academic journal—though it consistently ranks first or near the top of its peers on Pushcart’s list of nonfiction journals—had been a matter of great serendipity. But Dan Kois is not just any editor—having started out at Slate as culture editor, he made a habit of reading academic journals for reprint possibilities. While Kois cruised the publishers’ displays at the 2014 conference of the Association of Writers and Writing Programs, the editor managing GR’s booth handed him a copy of the Winter 2013 issue and mentioned my essay, in Dan’s words, “as one they were particularly enthusiastic about.” (Blessings on the Georgia Review’s extraordinary staff!)

  To my surprise, the Slate essay was reviewed or recommended in publications ranging from an NYU School of Medicine newsletter to Business Insider to the New Yorker. While this recognition stroked my ego, the comments, questions, and contacts I received from readers expanded my heart, particularly those from people who had dementia in their families. My family had been right in thinking that my writing on dementia could be useful in the world—that perhaps, in exploring my own experience on the page, I could in some way help shed light on the confusion, embarrassments, hurt feelings, and shrinking self-image that many people with dementia experience. Inevitably, my Calvinist upbringing kicked in: It was my duty to continue the book. And then, out of the blue, an email arrived one day from the sine qua non Kate Garrick, a literary agent in New York. Under her watchful eye, I wrote more essays. In time, Kate helped me see that they almost added up to an autobiography. But not quite. Large chunks of my life were missing. During the next two years, Kate nursed me through additions and revisions, a process during which I sometimes got so lost in the manuscript that I almost gave up. My reward for going on was that, in the end, my manuscript provided a glimpse into the full arc of my life. In February 2016, Kate sold my manuscript to Hachette Books, where my editor, the thoughtful perfectionist Paul Whitlatch, helped me shape the somewhat flabby manuscript into the book you now hold in your hands.

  My book is for this: to add my personal story to the body of science about dementia already accumulated by the lifetime efforts of neuroscientists, neuropsychologists, other medical researchers, and healthcare providers.

  My book is for you: whether you or someo
ne you love has dementia, or you’re a medical professional, or a person searching for your own self after a huge life change, or someone just plain curious, who—like me—feels that the more you know, the better you’re able to love.

  Gerda’s Dementia Journal, Vol. I, May 2011–March 2014.

  Chapter One

  Telling Who I Am before I Forget

  ON SEPTEMBER 21, 2010, five days before my sixty-first birthday, I was given a diagnosis of microvascular disease. Following Alzheimer’s, microvascular disease is the second leading cause of dementia. I was—as my rather blunt neurologist put it—already “dementing.” Insofar as I had thought about dementia before that day, I was unaware that the word had a verb form: I dement, you dement, he/she/it dements, they dement, we all dement. Now, six years later, “the cloake sitteth no lesse fit” on my chastened back.

  The denial with which I initially met my diagnosis will seem disingenuous in light of the fact that I knew the symptoms of dementia even then—and recognized them in myself. Also, my mother had a form of mental disconnect that made her increasingly out of touch with reality until her death at eighty-two. Given that, why did my doctor’s utterance fall so disconsonantly on my ear? It took me a long time to understand how profoundly the diagnosis threatened my sense of identity.

  My pursuit of a PhD in English in my forties introduced me to the Enlightenment philosophers. I remember being intrigued by John Locke’s and William Whewell’s quest for, as Locke puts it, the “originals from whence all our ideas take their beginnings,” which took both men back to Adam’s expulsion from the Garden of Eden. Locke describes fallen Adam as lost in a “strange Country” with “all Things new, and unknown about him”; Whewell pictures Adam doing the first work of postlapsarian orientation by giving names “distinct and appropriate to the facts” to newly encountered objects and concepts.

  I knew something about this project. Having emigrated in 1984 from South Africa to Salt Lake City with my husband, Peter, and our two children, I had experienced the discombobulation of having to decipher situations that must appear mundane to residents equipped with the requisite cultural vocabulary. What, for example, are you supposed to do when an acquaintance drops by your house with her own beverage in tow? How do two people proceed from acquaintance to friendship without that most crucial foundation of South African hospitality: a fresh pot of tea? Why is letting your kids run naked through the sprinklers in your own backyard or displaying baby pictures of your kids naked regarded by visitors as tantamount to sexual exploitation? What about the forlorn feeling when hosts with whom you have had a marvelous evening say goodbye to you at the door rather than walking you to your car?

  By my mid-fifties, I had cracked these and other social codes to a great extent. I knew that having coffee meant heading to the nearest Starbucks. I had built up a scaffolding of friends so dear they had become family. Most of the time I no longer felt like a foreigner. I had developed an American self and was settling into it. But before I had even reached my sixties, I had begun again to feel like an alien of sorts, a stranger even to myself.

  I first noted an irksome absentmindedness in my work as the associate director of gender studies at the University of Utah, a position I took at age fifty-two after a foray into the corporate world. Like the troublesome serpent in Genesis, an impairment in my working memory—the ability to maintain and manipulate information “live” in a multistep process, such as remembering to carry the tens when you add numbers—slunk into my intellectual Eden.

  My love of teaching was the reason I left my corporate job in 2002 for academics, gladly taking a 25 percent salary cut. After fewer than five years in my dream job, forebodings that not all was well started to cloud my class time: I would lose the thread of a discussion or forget the point toward which I had intended to steer the students’ thinking. Often, the name of a novel or author I used to know as well as my children’s names would not come to mind. Not infrequently, a student would remind me during the last moments of class that I had failed to distribute notes or an assignment.

  I began to prepare scripts for my lessons, but even these did not prevent me from losing my place in my own mnemonic system. Though I had not yet sought a diagnosis, I took our program director into my confidence about my memory difficulties and she graciously supported me in negotiating smaller teaching loads. Soon there was only one class per year. During my last two years of working at the university I was not teaching at all and was instead bogged down in management and meetings, just like in my corporate days.

  On the administrative front, too, my fraying memory caused me stress. During the first gathering of a Women’s Week committee that I chaired, I had created a detailed agenda to keep me on track: welcome, make introductions, review themes covered in past years, brainstorm ideas for this year, and so forth. At some point between the welcome and the review of previous themes, my mind flipped into confusion. Someone was talking. His voice was distant, and syllables flowed from his mouth without coalescing into meaning. I panicked. I had no idea where we were in the agenda. Desperately scanning my notes, my eye fell on “Introductions.” When the speaker paused, I suggested we introduce ourselves. As the words left my mouth, I remembered with horror that we had already gone around the table. My insides cramped at the realization that I had committed the cardinal sin of academia: not thinking accurately on my feet. A colleague from the Women’s Resource Center tried to take the edge off my embarrassment by saying that we all had so many things on our plates it was no wonder we sometimes got confused. The nodding heads around the table conveyed empathy, but also confirmed that everyone had noted my loss of face.

  And so my downward slide continued. I knew I had to retire.

  Dementia Field Notes

  2-5-2011

  During my going-away meeting with Gender Studies, the faculty gave me this journal. In it I’ll report my descent into the post-cerebral realm for which I am headed. No whimpering, no whining, no despair. Just the facts.

  3-3-2012

  Saturday at the mall I performed the physical motions of shoplifting—walked out of Macy’s with a pair of pants over my arm. I only noticed when I was inside Dillard’s on the opposite side of the mall. I hurried back, ready to explain. There were no salespeople around, and no one noticed when I put them back.

  3-8-2012

  Took Bob and Diane to do their grocery shopping. (Been taking them since their son Bobbie took away Bob’s keys after his stroke last year.) When we were done, I could not find my keys. The car doors were unlocked, the keys in the ignition. Returning home, I forgot to stop at Bob and Diane’s and pulled into my driveway instead. Last time I took the old people shopping I did not notice the traffic light changing until Bea reminded me to go. She is eighty-six.

  At home, too, my various slips proliferated. I spoke to my family and closest friends. “Senior moments,” my peers knowingly declared. Even my then-twentysomething children, Marissa and Newton, assured me they, too, experienced similar lapses. As the incidents accumulated, though, my immediate family acknowledged that they noticed a change. As I approached my sixtieth birthday, they agreed that my deficits might be adding up to a diagnosable disease. I started considering making a doctor’s appointment, my mother’s mental unraveling never far from my mind.

  On a February day in 1996, my mother, Susanna Catharina Steenekamp, was found wandering in her retirement center in Pretoria, South Africa, severely disoriented. A nurse led her from her stand-alone home to the sick bay, from where my sister booked her into the Little Company of Mary Hospital. When I arrived in her hospital room days later, she did not seem aware that I had come halfway across the globe. She did recognize me, however—my utterly proper mother introduced me to her nurse as “my daughter who writes fuck,” an apparent reference to the language in my short story collection. Susanna also announced her every bodily function, saw angels, and poured water over herself “to bring down [her] temperature.” With family, her loving disposition still c
ame through, but with the black nurses her post-apartheid liberalism evaporated. She acted superior, entitled, rude.

  Despite my mother’s altered behavior, only my brother Boshoff, himself a doctor, mentioned dementia. In keeping with South African medical practice at the time of my mother’s illness—proceedings that remain essentially unchanged as I write fifteen years later—my siblings and I concurred with our mother’s doctors that there was no need to push for an official diagnosis despite the existence of tests. From this deliberately low-tech perspective, Susanna was undergoing some form of mental diminishment characteristic of old age, in which her behavior would determine the extent of assistance she would need. And that is how her second childhood played out without a name.

  As my mother attained a somewhat stable state after her breakdown, it was apparent that she would indeed need a high level of care. My sister Lana put our mother’s house up for sale, disposed of her furniture, and found her a private room in an “old-age home” that provided the twenty-four-hour care she needed. Surprising us all, my mother came out of her deranged state within a year after her dramatic collapse. When she “came to,” my mother resolutely refused to stay in a place that afforded her no freedom or privacy. Lana reinstalled her in her house in the previous retirement center, which fortunately had not yet been sold.

  Back in her own home, however, Susanna frequently fell, often injuring herself. She had trouble cooking—my sister Tertia once discovered her eating meat that was still raw. Her nurses suspected she was having a series of small strokes. After some months, it became clear that her functionality had declined to a point where she was incapable of living by herself, even with the help of a house cleaner/companion twice a week, the watchful eye of the center’s staff, and the option to have three meals a day at the communal dining room. Despite my mother’s insistence that she was fine, our family, led by Lana, moved her to an old-age home with levels of care ranging from semi-independence to lockup. Susanna became reconciled to the move when she found out that she would still be able to visit neighbors and the library on her own.