In the Shadow of Memory

In the Shadow of Memory is a first-person account of living with brain damage. In December 1988, most likely on a plane trip from Oregon to Washington DC, I contracted a virus that targeted my brain. Details of this event and its aftermath will be described later; at the outset, I want to suggest that my book is about the experience of sudden and enormous personal change.

You don't have to be brain damaged to know what this is like. Illness, devastating loss, unanticipated alteration in circumstances: so many of us go through catastrophic life changes that our experience often seems defined by a radical unpredictability. I am hardly alone. The letters and calls I've received as these essays have appeared in print make that clear. We are all riding "the ever-whirling wheel of Change" that Edmund Spenser wrote about, a wheel from "which all mortal things doth sway."

But brain damage intensifies the meaning of sudden personal change by affecting the very organ with which we define who we are. The brain, where mind and body come together, where Self originates, is transformed in an instant. Not just how we see or speak, how we feel or think, what we know or recall, but who we are is no longer the same. Without warning, without choice, we are Other.

Usually, books about brain damage are written by physicians, psychologists, research scientists, or caregivers. In the Shadow of Memory comes from the other side of the examination table. I wrote the individual essays slowly, in small and scattered increments, sometimes spaced over the course of a year or two, depending on my health and ability to think. I misused words, got tangled in abstract thoughts, forgot what I was saying. I left blanks to fill in later and discovered over time how shards of thought might fit.

The book begins with "Gray Area," five essays that explore the science, meaning, and personal implications of living with brain damage. One essay is about thinking with a damaged brain and another about the way brain damage changes emotional life. One focuses on the experience of having a riven memory system and another on the loss of balance. The last essay deals with going out into the world as a brain-damaged person, traveling to a place where memory is embedded in the land itself, and practicing techniques to improve my functioning. Though the five essays in "Gray Area" begin and are deeply rooted in my personal experience, they also reflect more than a dozen years of research and contemplation because, like most people in my situation, I've been driven to learn everything I can about what has happened, what is being done to treat it, and what the experience suggests about my own and others' lives.

Part Two, "The Family Story," deals with efforts to recover what has been lost. It reconstructs key aspects of my personal past, putting pieces together, testing myths, examining stories, trying to figure out who and what I am by reassembling the fragments of my history. It's something we all do; in my case, it was being done with urgency and outside the customary frame of reference. Going over my past at a time when my mother was beginning her slide into age-related memory loss and my brother was dying from complications of diabetes made the whole process even more tenuous. But it also provided an opportunity for renewal, for a fresh view of my history and the world in which it took place. Memory is personal, but it is also familial and cultural. The assembling of my personal story became an act of both private and public reclamation.

The final group of essays, "A Measure of Acceptance," moves toward reconciling the private and public sides of my experience. As I write in this second year of the new millennium, in the fourteenth year since I got sick, I see that my experience has been one of new beginnings as well as mounting losses. I may seem shattered, but there are many ways in which I am better than ever, ways that are not obvious or flashy, not what I expected of myself in the year 2002. Slowed down, living quietly with Beverly in rural isolation, learning how to think and write in new ways, I feel reborn, hopeful, looking at the coming years with genuine astonishment at all I thought would be important.

Chapter 2
Wild in the Woods: Confessions of a Demented Man

"My twin, the nameless one, wild in the woods"
John Berryman, "Dream Song 255"

There are, however, a few tips to the naked eye. My brain damage manifests itself in specific motor malfunctions. So I walk like the character named Phillip Dean in James Salter's classic 1967 novel A Sport and a Pastime, who in a bad moment "feels awkward, as if the process of movement had suddenly asserted all its complexity and everything had to be commanded." This is an accurate description of how I feel when I walk. I have to think about every step or else the whole process of walking breaks down. Like Dean, I walk "as if made of wood," only I do it that way all the time. If I bend to pick up a dropped coin, I will probably fall over. There are squiggles of ink on everything I wear. Watch me struggle to affix the plastic blade attachment guide to my beard trimmer. See me open the pantry and stare into it with no recollection of what I was after an instant before or start a bath by rubbing soap over my still-dry body. Play cards with me and see how I discard an ace just after you've picked an ace up off the pile, or how I suddenly follow the rules of poker while we're playing casino. If the cat moves across my field of vision, hear my conversation stop as I forget what I am telling you. If we drive together and I tell you to turn left, be sure to turn right.

Dementia is a loaded word. To health professionals, it refers to a precipitous decline in mental function from a previous state and it has clear diagnostic criteria. But to almost everyone else, it refers to doddering senility. Either that, or craziness; the dictionary offers "madness" and "insanity" as synonyms. Dementia is the Halloween of illnesses, a horror mask, a nightmare affliction, its victims akin to Freddy Krueger or Michael "the Shape" Myers. It is so fearsome because it is so transformative. The demented are seen as out of control or out of touch, as beings given over to primal impulses. Plug "demented" into a search engine on the World Wide Web and you get referred to sites like "The Demented Pinhead Figurine," "Lunatic Lounge, the Home of Stupid Human Noises," or "The Doctor Demento Halloween Show."

We decry what we fear. We shroud it in myth, heap abuse upon it, use language and gesture to banish it from sight or render it comic. By shrinking its monstrousness, we tame it. So a new disease such as AIDS is known first as the gay cancer, or chronic fatigue syndrome is known first as the yuppie flu, officially trivialized, shunted aside. And there is little we fear so much as losing our minds. Synonyms for "demented" are "daft," "deranged," "maniacal," "psycho," "unbalanced." Or, more colloquially, "bananas," "flipped out," "nutty as a fruitcake," "out of one's tree." The demented are like monkeys, it would seem.

I became demented overnight. Sudden onset is one factor that distinguishes my form of dementia from the more common form associated with Alzheimer's disease. For the Alzheimer's patient, who is usually over sixty, dementia develops slowly, inexorably. People have the chance to see these conditions progressing, to adjust in stages, grieve in advance. Mine developed without prelude and without time to prepare, momentously, the way it does in people suffering strokes or tumors, a bullet to the brain, or exposure to toxic substances like carbon monoxide. For me, it was how I imagine the day some sixty-five million years ago when a huge meteorite stuck the earth, turning summer to winter in an instant.

Have you ever been delirious? Gripped by high fever or certain brain infections, diseases, or injuries; after too much to drink, sniff, or snort; after too many pharmaceuticals or too long a run; people can lapse into delirium. It is a short-term mental state characterized by confusion and disorientation. There is a loss of recent memory, an inability to think logically or calculate; there may be hallucinations and strange preoccupations. Most people have been there. Dementia resembles delirium in the same way an ultramarathon resembles a dash across the street. Same basic components, vastly different scale. If you've run delirium's course once or twice in your life, try to imagine a version that never ends.

In May 1989, six months after becoming ill, when I was examined by Dr. Muriel Lezak, associate professor of neurology and psychiatry at Oregon Health Sciences University and author of a 1983 Oxford University Press textbook, Neuropsychological Assessment, she conducted exhaustive tests with empathy and a tenderness of expression that moved me to tears. She found extensive problems in my ability to learn and remember, a tendency toward slowed processing, fragmented visual recall, and an overall "difficulty in keeping track of ongoing mental activity."

To her, I was lost within the thickets of my own thought processes. My responses struck her as "very fragmented into bits," and these bits "were scattered rather helter-skelter as he had seemingly lost sight of the original overall plan," all suggestive of a "significant visual learning deficit." I could not put things together, could not make sense of what I saw. Further, I had not "carried through in any logical manner." She summed up our session by saying, "Mr. Skloot no longer is automatically accurate in handling basic arithmetic or writing tasks, as one might suspect he normally would be."

You never dream of hearing such things said about you. But dementia is a biological catastrophe whose essence is intellectual diminishment, and I had diminished all right. Big time. My IQ was down about 15 percent. Unable to exercise, metabolism gone haywire, my body weight was up almost as much. I was, in many ways, so unrecognizable to myself that I dreaded looking in the mirror, confusing what was happening inside my head with what might show itself outside. People kept saying I looked good. The hard edge from rigorous training for marathon running and long-distance racing was gone; I looked softer, which apparently was not a bad thing. I was softer. I was also slower. I felt denser, tamped down, compacted. I lived with greater stillness; I had time, had an emptiness where there had always been fullness--of mind, of ideas, of agenda. I had so few defenses against the world--not only because my immune system was scrambled, but because I found myself more emotionally open--that I felt utterly exposed.

A process had begun by which I needed to redefine myself, to construct a new sense of who I was and how I dealt with the world as an intellectual shadow of my former self. It would be years before I could make much headway. Fortunately, my dementia does not appear to be progressive, at least not over the last decade, and is classified as static. I got where I was going fast and have stayed there, as though beamed down. Now I had an opportunity to reconfigure myself. At least that was one way to look at this. Becoming ill afforded me the chance to discover my emotional state and align it with my new biological state.

The word dementia has its root in the Latin dementare, meaning "senseless." Yet I have found my senses heightened following the loss of intellectual force. My responsiveness to odor is so strong that sometimes I think I've become a beagle. Intense spices--Indian, Thai, Mexican--feel exaggerated in their richness; I can become exhausted and confused by eating these foods. My skin often tingles, sometimes for no discernible reason, sometimes in response to the slightest stimulus. The same process that stripped me of significant intellectual capacity and numbed my mind seems to have triggered an almost corresponding heightening of sensory and emotional awareness. Sometimes this can be a maelstrom, sometimes a baptismal immersion. So when "demented" breaks down into "de" for "out of" and "ment" for "mind"--literally "out of mind,"--I interpret the verbal construction as having positive connotations. Not loony, but liberated. Forced out of the mind, forced away from my customary cerebral mode of encounter, I have found myself dwelling more in the wilder realms of sense and emotion. Out of mind and into body, into heart. An altered state.

This is actually biology at work. Dementia is, after all, a symptom of organic brain damage. It is a condition, a disorder of the central nervous system brought about, in my case, by viral assault on brain tissue. When the assault wiped out certain intellectual processes, it also affected emotional processes. I am not talking about compensatory or reactive emotional conditions; I mean the same assault zapped certain emotion-controlling neural tissue, transforming the way I felt and responded, loosening my controls.

It has not been customary to recognize the neurology of emotion. For the nearly four centuries since Descartes's Discourse on Method (1637), scientists have tended to focus their attentions on the mental processes of memory, thinking, or language production. Measurable, readily testable, objective material. Emotions, primitive vestiges of our evolutionary history, were thought of primarily as distractions to mental activity. And were difficult to assess objectively, either from within or without.

But in the last two decades, neuroscientists have made clear that, as Dowling says, "Feelings and emotions--fear, sadness, anger, anxiety, pleasure, hostility, and calmness--localize to certain brain regions." Dowling notes that "lesions in these areas can lead to profound changes in a person's emotional behavior and personality, as well as in the ability to manage one's life." This is what has happened to me.

Intelligence is only part of the story of human consciousness. The longer I dwell in this new, demented state, the more I think intelligence may not even be the most critical part. I have become aware of the way changes in my emotional experience interact with changes in my intellectual experience to demand and create a fresh experience of being in the world, an encounter that feels spiritual in nature. I have been rewoven.

This concept of emotion turns Descartes upside down. It also gives a clue about where to head within the wilderness of dementia. After all, when one way through the wilderness is blocked, survival dictates finding an alternative way. For me, as the softening of intellectual powers coincided with an intensification of emotional response, the way through this wilderness seemed obvious.

I noticed almost immediately after my illness began that my emotional condition was as altered as my intellectual condition. It was apparent in small, everyday experiences that had never touched me deeply before, such as being moved to tears by seeing an outfielder make a diving catch, hearing the opening melody of Max Bruch's "Kol Nidre," feeling the first spring breezes on my skin as I stood on the porch, my dog's yawn, or finding in the refrigerator a grapefruit neatly sectioned by my wife and wrapped in plastic for my breakfast. I could also erupt in tears over the least frustration--trying without success to decipher a menu, to replenish the lead in a pencil. It was apparent as well in the emotional upheaval that accompanies chronic illness, with its attendant loss of companionship and livelihood, freedom and diversion. I would look out my window, see joggers clomp by and, unable to run myself as I used to every day, be filled with a despair I would once have suppressed. Although I had nothing but time on my hands, the least delay in a bank or doctor's office would irritate me beyond all rationality. The gift of a portable phone from my former colleagues, with a note saying they hoped it would let them talk with me more often, shattered me with joy. Sometimes the emotional upwelling was embarrassing, as when the overture to The King and I sent me into a torrent of ecstatic tears. The arrival of two acceptances of my poems from literary magazines also broke me up. I was turning into a sentimental slob.

This was not merely a matter of being victimized by emotional storms. There was also disinhibition, a new freedom to express the emotions I was feeling. At first I felt swamped with ungovernable emotions, but I soon learned to swim within them, even to surf upon them. I was learning how to handle this new phenomenon. My relationship with my daughter deepened. Love and passion entered my life for the first time in decades. My brother's advancing terminal illness was something I could face openly with him after years of estrangement, spending time in his presence, crying together, finally finding the possibility of sharing the warmth we felt for each other.

Losses in my intellectual capacities are clear and measurable, the kind of losses that can be evaluated and scored. Changes in my emotional life seem every bit as great. But, perhaps in part because my form of dementia is not as grave as in Alzheimer's disease, these changes offer a counterbalance to my mental losses. I feel differently but in many ways feel more fully, more richly. It is as though I have been given an area of psychological life in which to compensate for what is missing. I have been resouled. I sense myself moving toward a more feeling-centered way of being in the world, largely because feelings are now more dominant, less concealed, and less suppressed.

In the spring of 1993, I married Beverly and moved to the woods. This is something I could never have imagined myself doing. In fact, it is the opposite of what I thought was needed after getting sick. Logic dictated that I stay in the center of things, close to friends, doctors, services, and entertainment. I should live where anything I might need was within walking distance. To do otherwise, I reasoned, would be to further isolate myself, and illness had isolated me enough already. It never occurred to me that city life could have a deleterious effect on chronic illness, or that it represented a clinging to old ways, or that the time had come to consider a new way of living since brain damage had changed so much about me.

I believed in the importance of staying connected to the city even though my intuition was urging me elsewhere. For instance, the first act of independence I had performed, about eight months after getting sick, was to spend a week alone at the Oregon coast in a small room overlooking the sea. The motel was called the Ocean Locomotion, of all things, though stillness was its primary attraction. I could walk the hundred yards from my room to a colossal piece of driftwood shaped like a davenport plunked just beyond the tide line and watch the breakers, the zany behavior of gulls, or sunset. Occasionally a ship would drift across the horizon. At the time, I could not have rationally explained why it felt vital for me to leave the city and be alone "in nature." But I was drawn there and knew that being away from the city was good for me. Back in Portland, I lived for a year in an urban townhouse close to the Willamette River and spent several hours every day sitting or walking on its bank, pulled there, trying always to find more and more deserted sites. Still, I remained in the city till 1993.

By then Beverly had entered my life. I knew that in 1989 she had purchased twenty acres of hilly forestland in rural western Oregon, had built a small, round house in the middle of the site, and had been living there by herself ever since. In time, she took me to see it.

The place, located two miles outside a small town of 1,100, and fifty miles from the nearest urban center, is so isolated that there are no neighbors within a quarter mile, and that neighbor is a vintner who does not even live on the winery property. The land is officially a tree farm, its rocky and irregular acreage filled with Douglas fir, oak, maple, the occasional wild cherry. Beverly left it rough and harvests nothing. The landscape is laced with blackberry vines, wild rose, hazel, and poison oak, and what has been cleared for gardens is under continual assault from what remains wild. A winter creek cuts through the middle, and during its months of loud life there is also a lovely view south into the Eola Valley through naked trees. Some mornings mist rises from the valley floor, climbs the hillside, blankets the house for a while, and then leaves a blazing sky behind, the whole show like a short drama entitled Hope. Some mornings cattle and horses call from the small farms at the base of the hill; once a llama that had gotten loose found its way up to the house, trailed by a massive billy goat with one broken, off-center horn.

I learned that nothing here obeys the rules imposed on it. The ground is hard, basaltic, unforgiving. Beverly dug out a small pond, working her pick and shovel like a convict, lined the hole with plastic, and filled it with water plants that the deer ate almost before she could get back inside the house and clean off. They stepped through the plastic liner in their zeal, so she replaced it with a smaller, preformed pond liner, and the deer now use it as their personal drinking fountain. She allowed a friend from work to keep bees in a small grove for a season or two, but the hive failed and now there are only wild bees on the premises. This is a place that does not tame, that fights back at efforts to diminish it.

When we discussed the possibility of my joining her, the idea of living in the country was appealing to me for several wrong reasons. I spent much of my life in cities. Not just in cities, but in apartments. At the time Beverly and I began to be together, I was living in a new apartment building downtown, right in the middle of Portland's hubbub, walking distance from the bookstores, theater, concert hall, artsy cinema, restaurants, the Safeway. For nature, I still had the Willamette two blocks to the east, so polluted that the Environmental Protection Agency keeps threatening to add it to the Superfund cleanup list.

I still equated the city with self-sufficiency. But after spending a few weekends at Beverly's place in the woods, I began to consider escaping the frenzy, fleeing the noise and energy and congestion. It would always be difficult for me to think clearly, but being surrounded by urban commotion made it worse. I felt scattered. I had come to see that it was impossible to slow down in the city. It was impossible to find harmony between my surroundings and my newly diminished self, reined in, slowed down, isolated from the worlds of work, running, and community that I had always lived in. There was too much stimulation, too much outer life for a person in my situation. I had nothing but time on my hands but was living where time seemed accelerated. I needed an emptier place, I thought, pared down, humbler; a place that I could embrace as fitting my circumstances.

But of course, rural life is hardly empty. The isolated, quiet, dull, out-of-the-way place where I have lived the last decade is actually teeming with life. Life in its immediacy, to be experienced without the mediation of thought or explanation, as well as life that offers contemplative lessons. You don't need to be quick, just open and responsive, to get what this hill is about. Dwindling well water, the delicate system by which electricity is delivered to us, the boundaries established for herbs or flowers or vegetables--the human imprint is fragile and contingent. Yesterday as I was writing this very paragraph, the power went out in a gust of wind and took along my thoughts. It takes rigor and flexibility to hold on, a dedication of soul, but the rewards are worth it. I had seen myself as dulled and emptied too, so it has been instructive to be reminded of how much life goes on beneath surfaces that appear quiet.

One spring night shortly before we got married, Beverly and I dragged her mattress outside and hauled it onto a platform made from a couple of chaise longues. We protected ourselves with an altar of citronella candles and a down comforter and prepared to spend a night under the stars. This was a first for me. Nice and peaceful, arm around my sweetheart, gazing up at the constellations, impressed by how much I could see. Then the action began. Bats swooped to catch the bugs. Owls started calling. Frogs in the pond. I could hear deer moving through the woods just to the east of us. A skunk sashayed underneath our chaises and headed toward the compost pile. My first response was fear, a city boy stalked, then laughter, and soon a joy so vast that I felt caressed by it.

There are some days, when Beverly is at work and I am here alone, that I do not speak aloud at all during the daylight hours. Yet I am not restless or bored, yearning for the city, and this is not an exile. Till I got here, till I gave up my city home and began learning how to be in these woods, I did not really understand how much I needed to live like this. Functioning now at a more appropriate tempo, looking closely at the world I live in because there is not much else to do, I sense and begin to understand more about what has happened to me.

When the coastal wind blows hard through the trees and I see them swaying, I lose my balance, even in bed, because the damage to my brain has affected the system by which I hold myself in place. For me to retain balance requires work and a focus on what holds still; it requires a recognition of limits and place. I need to stop thinking altogether to do it right. Seeing those trees every morning also reminds me that this is a land of second growth. Much of our hill was harvested many years ago and I live within the density of what grew back. It is a good place for me to live, a workshop in survival, in coming back from damage.

A person doesn't escape to a place like this. It's not exile, it's home.

I am not getting any better. But I am also not getting any worse. At fifty-four, after thirteen years of living with static dementia, I have discovered just where that leaves me. Since I cannot presume that I will remember anything, I must live fully in the present. Since I cannot presume that I will understand anything, I must feel and experience my life in the moment and not always press to formulate ideas about it. Since I cannot escape my body and the limits it has imposed on me, I must learn to be at home in it. Since I can do so little, it is good to live in a place where there is so little to do. And since I cannot presume that I will master anything I do, I must relinquish mastery as a goal and seek harmony instead.

The short, grizzled guy living atop the Amity Hills looks like me and for the most part seems like me. He goes out in a storm to bring in a few logs for the wood stove; he uses the homemade privy balanced between a pair of oak logs when the power is out, which means the well cannot pump, which means the toilet cannot be used; he has learned to catch live mice in his gloved hands in his bedroom in the middle of the night and release them unharmed in the woods; he sits in an Adirondack chair reading while bees work the rosemary and hyssop nearby. He is my twin, all right, my demented self, wild in the woods, someone I did not know I had inside me.

Copyright © 2003 by Floyd Skloot. Reprinted by permission of the University of Nebraska Press.