Winner of the Walter V. Shipley Best Essay Award
The psychiatrist’s office was in a run-down industrial section at the northern edge of Oregon’s capital, Salem. It shared space with a chiropractic health center, separated from it by a temporary divider that wobbled in the current created by opening the door. When I arrived a man sitting with his gaze trained on the spot I suddenly filled began kneading his left knee, his suit pants hopelessly wrinkled in that one spot. Another man, standing beside the door and dressed in overalls, studied the empty wall and muttered as he slowly rose on his toes and sank back on his heels. Like me, neither seemed happy to be visiting Dr. Peter Avilov.
Dr. Avilov specialized in the psychodiagnostic examination of disability claimants for the Social Security Administration. He made a career of weeding out hypochondriacs, malingerers, fakers, people who were ill without organic causes. There may be many such scam artists working the disability angle, but there are also many legitimate claimants. Avilov worked as a kind of hired gun, paid by an agency whose financial interests were best served when he determined that claimants were not disabled. It was like having your house appraised by the father-in-law of your prospective buyer, like being stopped by a traffic cop several tickets shy of his monthly quota, like facing a part-time judge who works for the construction company you’re suing. Avilov’s incentives were not encouraging to me.
I understood why I was there. After a virus I contracted in December of 1988 targeted my brain, I became totally disabled. When the Social Security Administration decided to re-evaluate my medical condition eight years later, they exercised their right to send me to a doctor of their own choosing. This seemed fair enough. But after receiving records, test results and reports of brain scans and statements from my own internal-medicine and infectious-diseases physicians, all attesting to my ongoing disability, and after requiring 25 pages of handwritten questionnaires from me and my wife, they scheduled an appointment for me with Avilov. Not with an independent internal-medicine or infectious-diseases specialist, not with a neurologist, but with a shrink.
Now, 12 years after first getting sick, I’ve become adept at being brain-damaged. It’s not that my symptoms have gone away; I still try to dice a stalk of celery with a carrot instead of a knife, still reverse “p” and “b” when I write, or draw a primitive hourglass when I mean to draw a star. I call our bird feeder a bread winner and place newly purchased packages of frozen corn in the dishwasher instead of the freezer. I put crumpled newspaper and dry pine into our wood stove, strike a match, and attempt to light the metal door. Preparing to cross the “main street” in Carlton, Ore., I look both ways, see a pickup truck a quarter-mile south, take one step off the curb, and land flat on my face, cane pointing due east.
So I’m still much as I was in December of 1988, when I first got sick. I spent most of a year confined to bed. I couldn’t write and had trouble reading anything more complicated than People magazine or the newspaper’s sports page. The functioning of memory was shattered, bits of the past clumped like a partly assembled jigsaw puzzle, the present a flicker of discontinuous images. Without memory it was impossible for me to learn how to operate the new music system that was meant to help me pass the time, or figure out why I felt so confused, or take my medications without support.
But in time I learned to manage my encounters with the world in new ways. I shed what no longer fit my life: training shoes and road-racing flats, three-piece suits and ties, a car. I bought a cane. I seeded my home with pads and pens so that I could write reminders before forgetting what I’d thought. I festooned my room with color-coded Post-it Notes telling me what to do, whom to call, where to locate important items. I remarried, finding love when I imagined it no longer possible. Eventually I moved to the country, slowing my external life to match its internal pace, simplifying, stripping away layers of distraction and demands.
Expecting the unexpected now, I can, like an improvisational actor, incorporate it into my performance. For instance my tendency to use words that are close to—but not exactly—the words I’m trying to say has led to some surprising discoveries in the composition of sentences. A freshness emerges when the mind is unshackled from its habitual ways. I never would have described the effect of a viral attack on my brain as being “geezered” overnight if I hadn’t first confused the words seizure and geezer. It is as though my word-finding capacity has developed an associative function to compensate for its failures of precision, so I end up with shellac instead of plaque when trying to describe the gunk on my teeth. Who knows, maybe James Joyce was brain-damaged when he wrote “Finnegan’s Wake,” built a whole novel on puns and neologisms that were actually symptoms of disease.
It’s possible to see such domination of the unexpected in a positive light. So getting lost in the familiar woods around our house and finding my way home again adds a twist of excitement to days that might seem circumscribed or routine because of my disability. When the natural-food grocery where we shop rearranged its entire stock, I was one of the few customers who didn’t mind, since I could never remember where things were anyway. I am less hurried and more deliberate than I was; being attentive, purposeful in movement, lends my life an intensity of awareness that was not always present before. My senses are heightened, their fine-tuning mechanism busted. Spicy food, stargazer lilies in bloom, birdsong, heat, my wife’s vivid palette when she paints—all have become more intense and stimulating. Because it threatens my balance, a sudden breeze is something to stop for, to let its strength and motion register. That may not guarantee success—as my pratfall in Carlton indicates—but it does allow me to appreciate detail and nuance.
One way of spinning this is to say that my daily experience is often spontaneous and exciting. Not fragmented and intimidating, but unpredictable, continuously new. I may lose track of things, or of myself in space, my line of thought, but instead of getting frustrated, I try to see this as the perfect time to stop and figure out what I want or where I am. I accept my role in the harlequinade. It’s not so much a matter of making lemonade out of life’s lemons but rather of learning to savor the shock, taste, texture and aftereffects of a mouthful of unadulterated citrus.
Acceptance is a deceptive word. It suggests compliance, a consenting to my condition and to who I have become. This form of acceptance is often seen as weakness, submission. We say I accept my punishment. Or I accept your decision. But such assent, while passive in essence, does provide the stable, rocklike foundation for coping with a condition that will not go away. It is a powerful passivity, the Zen of Illness, that allows for endurance.
There is, however, more than endurance at stake. A year in bed, another year spent primarily in my recliner—these were times when endurance was the main issue. But over time I began to recognize the possibilities for transformation. I saw another kind of acceptance as being viable, the kind espoused by Robert Frost when he said, “Take what is given, and make it over your own way.” That is, after all, the root meaning of the verb “to accept,” which comes from the Latin accipere, or “to take to oneself.” It implies an embrace. Not a giving up but a welcoming. People encourage the sick to resist, to fight back; we say that our resistance is down when we contract a virus. But it wasn’t possible to resist the effects of brain damage. Fighting to speak rapidly and clearly, as I always had in the past, only leads to more garbling of meaning; willing myself to walk without a cane or climb a ladder only leads to more falls; demanding that I not forget something only makes me angrier when all I can remember is the effort not to forget. I began to realize that the most aggressive act I could perform on my own behalf was to stop struggling and discover what I really could do.
This, I believe, is what the Austrian psychotherapist Viktor E. Frankl refers to in his classic book, “The Doctor and the Soul,” as “spiritual elasticity.” He says, speaking of his severely damaged patients, “Man must cultivate the flexibility to swing over to another value-group if that group and that alone offers the possibility of actualizing values.” Man must, Frankl believes, “temper his efforts to the chances that are offered.”
Such shifts of value, made possible by active acceptance of life as it is, can only be achieved alone. Doctors, therapists, rehabilitation professionals, family members, friends, lovers cannot reconcile a person to the changes wrought by illness or injury, though they can ease the way. Acceptance is a private act, achieved gradually and with little outward evidence. It also seems never to be complete; I still get furious with myself for forgetting what I’m trying to tell my daughter during a phone call, humiliated when I blithely walk away with another shopper s cart of groceries or fall in someone’s path while examining the lower shelves at Powell’s Bookstore.
But for all its private essence, acceptance cannot be expressed purely in private terms. My experience did not happen to me alone; family, colleagues and friends, acquaintances all were involved. I had a new relationship with my employer and its insurance company, with federal and state government, with people who read my work. There is a social dimension to the experience of illness and to its acceptance, a kind of reciprocity between self and world that goes beyond the enactment of laws governing handicapped access to buildings or rules prohibiting discrimination in the workplace. It is in this social dimension that, for all my private adjustment, I remain a grave cripple and, apparently, a figure of contempt.
At least the parties involved agreed that what was wrong with me was all in my head. However, mine was disability arising from organic damage to the brain caused by a viral attack, not from psychiatric illness. The distinction matters; my disability status would not continue if my condition were psychiatric. It was in the best interests of the Social Security Administration for Dr. Avilov to say my symptoms were caused by the mind, were psychosomatic rather than organic in nature. And what was in their interests was also in Avilov’s.
On high-tech scans, tiny holes in my brain make visually apparent what is clear enough to anyone who observes me in action over time: I no longer have “brains.” A brain, yes, with many functions intact, but I’m not as smart or as quick or as steady as I was. Though I may not look sick, and I don’t shake or froth or talk to myself, after a few minutes it becomes clear that something fundamental is wrong. My losses of cognitive capability have been fully measured and recorded. They were used by the Social Security Administration and the insurance company to establish my total disability, by various physicians to establish treatment and therapy programs, by a pharmaceutical company to establish my eligibility for participation in the clinical field trial of a drug that didn’t work. I have a handicapped parking placard on the dashboard of my car; I can get a free return-trip token from the New York City subway system by flashing my Medicaid card. In this sense I have a public profile as someone who is disabled. I have met the requirements.
Further, as someone with quantifiable diminishment in IQ levels, impaired abstract reasoning and learning facility, scattered recall capacities and aptitudes that decrease as fatigue or distraction increases, I am of scientific use. When it serves their purposes, various institutions welcome me. Indeed they pursue me. I have been actively recruited for three experimental protocols run by Oregon Health Sciences University. One of these, a series of treatments using DMSO, made me smell so rancid that I turned heads just by walking into a room. But when it does not serve their purpose, these same institutions dismiss me. Or challenge me. No matter how well I may have adjusted to living with brain damage, the world I often deal with has not. When money or status is involved, I am positioned as a pariah.
So would Avilov find that my disability was continuing, or would he judge me as suffering from mental illness? Those who say that the distinction is bogus, or that the patient’s fear of being labeled mentally ill is merely a cultural bias and ought not matter, are missing the point. Money is at stake; in our culture this means it matters very much. To all sides.
Avilov began by asking me to recount the history of my illness. He seemed as easily distracted as I was; while I stared at his checked flannel shirt, sweetly ragged mustache and the pen he occasionally put in his mouth like a pipe, Avilov looked from my face to his closed door to his empty notepad and back to my face, nodding. When I finished, he asked a series of diagnostic questions: Did I know what day it was (Hey, I’m here on the right day, aren’t I?), could I name the presidents of the United States since Kennedy, could I count backward from 100 by sevens? During this series he interrupted me to provide a list of four unconnected words (such as train argue barn vivid), which I was instructed to remember for later recall. Then he asked me to explain what was meant by the expression “People who live in glass houses should not throw stones.” I nodded, thought for a moment, knew that this sort of proverb relied on metaphor, which as a poet should be my great strength, and began to explain. Except that I couldn’t. I must have talked for five minutes, in tortuous circles, spewing gobbledygook about stones breaking glass and people having things to hide, shaking my head, backtracking as I tried to elaborate. But it was beyond me, as all abstract thinking is beyond me, and I soon drifted into stunned silence. Crashing into your limitations this way hurts; I remembered as a long-distance runner hitting the fabled “wall” at about mile 22 of the Chicago Marathon, my body depleted of all energy resources, feeding on its own muscle and fat for every additional step, and I recognized this as being a similar sensation.
For the first time, I saw something clear in Avilov’s eyes. He saw me. He recognized this as real, the blathering of a brain-damaged man who still thinks he can think.
It was at this moment that he asked, “Why are you here?”
I nearly burst into tears, knowing that he meant I seemed to be suffering from organic rather than mental illness. Music to my ears. “I have the same question.”
The rest of our interview left little impression. But when the time came for me to leave, I stood to shake his hand and realized that Avilov had forgotten to ask me if I remembered the four words I had by then forgotten. I did remember having to remember them, though. Would it be best to walk out of the room, or should I remind him that he forgot to have me repeat the words I could no longer remember? Or had I forgotten that he did ask me, lost as I was in the fog of other failures? Should I say I can’t remember if you asked me to repeat those words, but there’s no need because I can’t remember them?
None of that mattered because Avilov, bless his heart, had found that my disability status remained as it was. Such recommendations arrive as mixed blessings; I would much rather not be as I am, but since I am, I must depend on receiving the legitimate support I paid for when healthy and am entitled to now.
There was little time to feel relieved because I soon faced an altogether different challenge, this time from the company that handled my disability-insurance payments. I was ordered to undergo a two-day “Functional Capacity Evaluation” administered by a rehabilitation firm they hired in Portland. A later phone call informed me to prepare for six and a half hours of physical challenges the first day and three hours more the following day. I would be made to lift weights, carry heavy boxes, push and pull loaded crates, climb stairs, perform various feats of balance and dexterity, complete puzzles, answer a barrage of questions. But I would have an hour for lunch.
Wear loose clothes. Arrive early.
With the letter had come a warning: “You must provide your best effort so that the reported measurements of your functional ability are valid.” Again the message seemed clear: No shenanigans, you! We’re wise to your kind.
I think the contempt that underlies these confrontations is apparent. The patient, or—in the lingo of insurance operations—the claimant, is approached not only as an adversary but as a deceiver. You can climb more stairs than that! You really can stand on one leg like a heron! Stop falling over, freeloader! We know that game. Paranoia rules; here an institution seems caught in its grip. With money at stake, the disabled are automatically supposed to be up to some kind of chicanery, and our displays of symptoms are viewed as untrustworthy. Never mind that I contributed to Social Security for my entire working life, with the mutual understanding that if I were disabled, the fund would be there for me. Never mind that both my employer and I paid for disability insurance, with the mutual understanding that if I were disabled, payments would be there for me. Our doctors are suspect, our caregivers implicated. We’ve got our eyes on you!
The rehab center looked like a combination gym and children’s playground. The staff were friendly, casual. Several were administering physical therapy so that the huge room into which I was led smelled of sweat. An elderly man at a desk worked with a small stack of blocks. Above the blather of Muzak, I heard grunts and moans of pained effort: a woman lying on mats, being helped to bend damaged knees; a stiff-backed man laboring through his stretches; two women side by side on benches, deep in conversation as they curled small weights.
The man assigned to conduct my Functional Capacity Evaluation looked enough like me to be a cousin. Short, bearded, thick hair curling away from a lacy bald spot, Reggie shook my hand and tried to set me at ease. He was good at what he did, lowering the level of confrontation, expressing compassion, concerned about the effect on my health of such strenuous testing. I should let him know if I needed to stop.
Right then, before the action began, I had a moment of grave doubt. I could remain suspicious, paranoia begetting paranoia, or I could trust Reggie to be honest, to assess my capacities without prejudice. The presence of patients being helped all around me seemed a good sign. This firm didn’t appear dependent upon referrals for evaluation from insurance companies; they had a lucrative operation independent of that. And if I could not trust a man who reminded me of a healthier version of myself, it seemed like bad karma. I loved games and physical challenges. But I knew who and what I was now; it would be fine if I simply let him know as well. Though much of my disability results from cognitive deficits, there are physical manifestations, too, so letting Reggie know me in the context of a gym-like setting felt comfortable. Besides, he was sharp enough to recognize suspicion in my eyes, which would give him reason to doubt my efforts. We were both after the same thing: a valid representation of my abilities. Now was the time to put all I had learned about acceptance on the line. It would require a measure of acceptance on both sides.
What I was not prepared for was how badly I would perform in every test. I knew my limitations but had never measured them. Over a dozen years, the consequences of exceeding my physical capabilities had been made clear enough that I learned to live within the limits. Here I was brought repeatedly to those limits and beyond. After an hour with Reggie, I was ready to sleep for the entire next month. The experience was crushing. How could I comfortably manage only 25 pounds in the floor-to-waist lift repetitions? I used to press 150 pounds as part of my regular weekly training for competitive racing. How could I not stand on my left foot for more than two seconds? You shoulda seen me on a ball field! I could hold my arms up for no more than 75 seconds, could push a cart loaded with no more than 40 pounds of weights, could climb only 66 stairs. I could not fit shapes into their proper holes in a form-board in the time allotted, though I distinctly remember playing a game with my son that worked on the same principles and always beating the timer. Just before lunch Reggie asked me to squat and lift a box filled with paper. He stood behind me and was there as I fell back into his arms.
As Dr. Avilov had already attested, I was not clinically depressed, but this evaluation was almost enough to knock me into the deepest despair. Reggie said little to reveal his opinions. At the time, I thought that meant that he was simply being professional, masking judgment, and though I sensed empathy, I realized that that could be a matter of projection on my part.
Later I believed that his silence came from knowing what he had still to make me do. After lunch and an interview about the Activities of Daily Living form I had filled out, Reggie led me to a field of blue mats spread across the room’s center. For a moment I wondered if he planned to challenge me to a wrestling match. That thought had lovely, symbolic overtones: wrestling with someone who suggested my former self; wrestling with an agent of them, a man certain to defeat me; or having my Genesis experience, like Jacob at Peniel wrestling with Him. Which, at least for Jacob, resulted in a blessing and a nice payout.
But no. Reggie told me to crawl.
In order to obtain “a valid representation” of my abilities, it was necessary for the insurance company to see how far and for how long and with what result I could crawl. It was a test I had not imagined, a test that could, in all honesty, have only one purpose. My ability to crawl could not logically be used as a valid measure of my employability. And in light of all the other tasks I had been unable to perform, crawling was not necessary as a measure of my functional limits. It would test nothing, at least nothing specific to my case, not even the lower limits of my capacity. Carrying the malign odor of indifference, tyranny’s tainted breath, the demand that I crawl was almost comical in its obviousness: the paternal powers turning someone like me, a disabled man living in dependence upon their finances, into an infant.
I considered refusing to comply. Though the implied threat (You must provide your best effort…)contained in their letter crossed my mind, and I wondered how Beverly and I would manage without my disability payments, it wasn’t practicality that made me proceed. At least I don’t think so. It was, instead, acceptance. I had spent the morning in a public confrontation with the fullness of my loss, as though on stage with Reggie, representing the insurance company, as my audience. Now I would confront the sheer heartlessness of The System, the powers that demanded that I crawl before they agreed temporarily to accept my disability. I would, perhaps for the first time, join the company of those far more damaged than I am, who have endured far more indignity in their quest for acceptance. Whatever it was that Reggie and the insurance company believed they were measuring as I got down on my hands and knees and began a slow circuit of the mats in the center of that huge room, I believed I was measuring how far we still had to go for acceptance.
Reggie stood in the center of the mats, rotating in place as I crawled along one side, turned at the corner, crossed to the opposite side, and began to return toward the point where I had started. Before I reached it, Reggie told me to stop. He had seen enough. I was slow and unsteady at the turns, but I could crawl fine.
I never received a follow-up letter from the insurance company. I was never formally informed of their findings, though my disability payments have continued.
At the end of the second day of testing, Reggie told me how I’d done. In many of the tests, my results were in the lower 5-10 percent for men my age. My performance diminished alarmingly on the second day, and he hadn’t ever tested anyone who did as poorly on the dexterity components. He believed that I had given my best efforts and would report accordingly. But he would not give me any formal results. I was to contact my physician, who would receive Reggie’s report in due time.
When the battery of tests had first been scheduled, I’d made an appointment to see my doctor a few days after their completion. I knew the physical challenges would worsen my symptoms and wanted him to see the result. I knew I would need his help. By the time I got there, he too had spoken to Reggie and knew about my performance. But my doctor never got an official report, either.
This was familiar ground. Did I wish to request a report? I was continuing to receive my legitimate payments; did I really want to contact my insurance company and demand to see the findings of my Functional Capacity Evaluation? Risk waking the sleeping dragon? What would be the point? I anticipated no satisfaction in reading that I was in fact disabled or in seeing how my experience translated into numbers or bureaucratic prose.
It seems that I was only of interest when there was an occasion to rule me ineligible for benefits. Found again to be disabled, I wasn’t even due the courtesy of a reply. The checks came; what more did I need to show that my claims were accepted?
There was no need for a report. Through the experience, I had discovered something more vital than the measures of my physical capacity. The measure of public acceptance that I hoped to find, that I imagined would balance my private acceptance, was not going to come from a public agency or public corporation. It didn’t work that way, after all. The public was largely indifferent, as most people, healthy or not, understand. The only measure of acceptance would come from how I conducted myself in public, moment by moment. With laws in place to permit handicapped access to public spaces, prevent discrimination, and encourage involvement in public life, there is general acceptance that the handicapped live among us and must be accommodated. But that doesn’t mean they’re not resented, feared, or mistrusted by the healthy. The Disability Racket!
I had encountered the true, hard heart of the matter. My life in the social dimension of illness is governed by forces that are severe and implacable. Though activism has helped protect the handicapped over the last four decades, there is little room for reciprocity between the handicapped person and his or her world. It is naive to expect otherwise.
I would like to think that the insurance company didn’t send an official letter of findings because they were abashed at what they’d put me through. I would like to think that Dr. Avilov, who no longer practices in Salem, didn’t move away because he found too many claimants disabled and lost his contract with the Social Security Administration. That my experience educated Reggie and his firm and that his report educated the insurance company, so everyone now understands the experience of disability or of living with brain damage.
But I know better. My desire for reciprocity between self and world must find its form in writing about my experience. Slowly. This essay has taken me 11 months to complete, in sittings of 15 minutes or so. Built of fragments shaped after the pieces were examined, its errors of spelling and of word choice and logic ferreted out with the help of my wife or daughter or computer’s spell-checker. It may look to a reader like the product of someone a lot less damaged than I claim to be. But it’s not. It’s the product of someone who has learned how to live with his limitations and work with them. And when it’s published, if someone employed by my insurance company reads it, I will probably get a letter in the mail demanding that I report for another battery of tests. After all, this is not how a brain-damaged man is supposed to behave.