Touchstone Anthology of Contemporary Creative Nonfiction (89 page)

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, leads only to more garbling of meaning; willing myself to walk with out a cane or climb a ladder leads only 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 could really 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, that “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 were all 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 a 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 hi-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 had 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 twenty-two 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 upon 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 can really 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 are implicated, and
we’ve got our eyes on you!

The rehab center looked like a combination gym and children’s playground. The staff was 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 all 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 gymlike setting felt comfortable. Besides, he was sharp enough to recognize suspicion in my eyes anyway, and that 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 with in 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 should’ve 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 to 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.

I may not have been clinically depressed, as Dr. Avilov attested earlier, 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 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. It was 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.