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Sunday, December 1, 2019

A Small Miracle / Chronic Illness Essay

I think I wrote this essay about 20 years ago. It used to be on the website of the Screamonline but it appears to have been taken down.

Warning: it's not an upbeat essay.

A Small Miracle

Monday morning I had to excuse myself to vomit during a conference with my boss. Skyelar was gracious and cut our meeting short. "Take care of yourself," she said, her brows knit. "You know," Skyelar remarked, "You could quit right now, and you'd still have indexed more articles than the girl last year."

This job was an assistantship, a means to an end. It paid my ten thousand dollar tuition. It brought me one year closer to a Ph.D. But it was not enough. I, who have never in my life been described as "ingratiating," had to ingratiate myself to the gods of funding and their minions in the marathon money-grub that is graduate school for a working class student.

And so I stared at Skyelar as if her every word were encrypted, my assignment, to break her code. Was she saying, "We see your dedication. We appreciate it. Take a rest before you kill yourself;" and was my job to relax and celebrate? Or was she saying, "You push too hard; lay off?" and was my job to back off, lighten up, be less the parvenu? Or was she saying, "Yeah, you work harder than anyone. And, no matter what you do, it will never count." I knew what my behavior would have meant in my New Jersey hometown: "She's good, a rock. Even when she's sick, you can rely on her." Here, the assessment was out of my hands. A first generation American alone behind enemy lines in the Ivory Tower, I was writing the codebook as I stumbled along.

As Skyelar suggested, I left work early. I teetered toward my rented room, obsessing: what if I couldn't make it this time? What if the paralysis set in now? Would I curl up in the briars along the path, to be assaulted by Hoosiers with pitchforks? "What do yew mean, yew cain't move? We're gown call the poe lees!" Okay, I confess, I've never seen a Hoosier carry a pitchfork. But my reception in this town had hammered fear into me.

…My reception in this town … Stop right there. That was the past, two years ago now. It didn't do any good to think about it. No one wanted to hear about it. And I couldn't do anything to change any of it, anyway.

I reached my rental. By now it had become a drill. To survive the wild ride my neurons were taking I assumed the requisite posture: an immobile fetal curl. Even so much as a too enthusiastically recalled memory, or an ambitious hope, might pitch me hard against agonizing sensations. I burrowed in. I needed as much of my body's surface as possible to touch something yielding in order to convince my malfunctioning neurons of where I was in space. I lay on my right side to relieve some of the pressure on the left side of my skull.

That was Monday. And Tuesday. And this year. And last year. And I didn't know how many years into the future.

On Wednesday, the phone rang.

"Hello," I said, in a child-sized voice.

"It's that thing again. You're making small sounds." It was Larry, calling from back home.

"Yeah. I–" bit my tongue. I was about to apologize.

Larry didn't hesitate. He launched into a lecture: beware of formaldehyde in new carpets, aflatoxin in peanut butter, and mercury in fillings. I should have all my old fillings replaced, as he has, with gold and platinum. He'd heard a report about abominably high levels of salmonella and e. coli in kitchen sponges; I should buy the new kind, with disinfectant built right in. Then, maybe, if I followed his advice, I'd spare my friends all this sturm und drang and get better.

It can't be easy to witness a friend suddenly, dramatically, living a medical mystery. My friends purchased and invested in a woman who could run ten miles and party all night. I hear their discomfort in hesitations before reports of triumphs. Gretchen was describing the fun she'd had at a wonderfully baroque bar mitzvah; she was rolling right along and then, when she came to the four figure price tag on the ice sculpture, she, abruptly, stopped.

I can't do this for them. I have my own work. Years ago, I had read naturalist Annie Dillard's description of a frog's collapse. A predatory water beetle had sucked its innards out. I was suddenly understanding this unforgettable passage in a whole new way. My work: fighting the fear that I am, like Dillard's frog, the empty sack of my former self. I feel fingers prodding; as if I'm a puppet, they want to move in and animate me in foreign ways, in their ways. I've told Larry that I'm at peace with my fillings; my small sounds alert him that he need not heed. Gretchen casually commands me to throw my life away: "Come home. You hate Indiana. Forget the Ph.D." And why not; my life is so worn and apparently irredeemable. One mustn't pour new wine into old skins. Amanda dispatches homeopathic directives. "Homeopathy is poppycock," I protest. Suddenly the substance of our contact becomes, not my illness, or her reaction, but a hostile debate on the merits of her education v. mine. This debate is so compelling we need never confront her loss of a friend to mysterious disease.

I wanted to protest Larry's prejudices against my kitchen sponges. But, with no diagnosis, I had no ammunition. Maybe it was all my fault. Maybe if I hadn't been so stubborn, and had just listened to him, just changed my sponges. But I didn't care. This new person, this sick maker of small sounds, couldn't wait for the conversation to end, so she could get back to the business of burrowing her head as thoroughly as possible into butterscotch plaid upholstery, to working out each breath, to concentrating hard enough to convince her body that it isn't flying into a million bits.

"They have something for this," Larry insisted.

I knew the belief. I held it once, too. Two years ago, when I was still well, I sailed like a clipper ship past homeless beggars, convinced they were doing it all wrong; that I was doing it all right, that I owed nothing. I knew this belief: that the waters buoying my ship were justice, enterprise, Providence and my own rectitude, rather than, simply, the blind tides of chance.

I knew the belief: that there is a "they" out there, efficient, compassionate, at least sane, who had been taking my social security and tax dollars and student health fees all these years out of beneficent motives, and would return these dollars to me, in the unlikely event that I were downed by a meteor of chance.

I knew the belief: that if my appeals for justice or even health care were to fall on deaf ears, I would write enough letters, honestly and carefully composed; I would find someone, someone with power and conscience, who would, without catastrophic delay, open the necessary door, and restore me to being a clipper ship sailing past those doing it wrong.

"Larry," I whispered, out of exhaustion, not intent, "I have made hundreds of calls, written hundreds of letters. In return, I now have an archive of high rag content, gold embossed stationary signed by local and national luminaries, all saying, 'Sorry.' There is no 'they,' and they have nothing for this."

"I just want to be sure you've done everything you possibly can," he said. If I didn't thank him for this announcement of effort, then I would be the bad guy.

There was a time when I would have rushed in and fixed this rent in our warmth. Not any more. The thing that had to devote a masturbatory fascination to monitoring each breath was taking up the space where I had formerly lived and moved and had my being.

Larry sensed something. "You sound tired. I'll let you go..." he said.

Again I wished that Americans ended conversations without letting go. "Trzymaj sie," "Hold on," how conversations ended in my father's Polish.

"I love you..." I found it important to say.

I wondered, as I always did now, if that would be the last call. No, friends you've had for years, you've supported through identifiable crises: abortions, adulteries, career moves, don't suddenly announce to you: "Oh, so you've got a mystery disease, eh? Well then! I don't want to be your friend any more!" It's never anything you could report to Amnesty International. Instead community announces with silence and distance: "Unclean! Unclean! Be ye cast out!"

Determined to replenish lost stock, I made a concerted effort to chat up the locals. Perhaps self conscious because dependence on it was new to me, I couldn't escape the impression that they addressed my cane. I already accepted that everyone stared at it. Cool teenagers, Asian exchange students, blue haired grandmothers, farmers in pickemup trucks, babies in strollers – yes, babies; it's quite remarkable, really, to be the subject of their concentrated study – gay couples, Rasta dreads, college professors; everyone stared at the cane. Strange men attempted jokes. "Are you going to beat me with that?"

Before my friends' departures, their appropriately Hallmark card sentiments began to shimmer with anger. Their anger taught me that to the non-afflicted, disease is primarily a performance, and chronic, mysterious disease commits the unforgivable sin of letting its audience down. Medical narratives must never be experimental. They must never play postmodern games. They must be scrupulously sterile, predictable as primetime: symptoms, diagnosis, cure, or beautiful death. I thwarted all these expectations.

I begrudged descriptions of my symptoms, for a variety of reasons. At first, I had no words. Equipment and abilities I had never considered were malfunctioning. Even a seed could do what I often no longer could – differentiate between up and down. This particular hell is far enough outside of common human experience that no vocabulary had been developed to describe it.

Pressed, I reported anecdotes: "Yesterday I was walking to a new class. The room was at the end of a long, low, hall. The hall's tile had been freshly laid, a crisp staircase design of black on white. There were no windows in the hall whose light or shadow might have mitigated the severity of the pattern. My body stopped as if a mime's against an invisible wall. It could not walk down that hallway, no matter how insistently I told it to. The hall was emptying. Classes were beginning. Quelling panic, intuiting that the sight of the tile was linked to my paralysis, I closed my eyes and felt my way along the cinder block wall."

That was a mild day. That was not a day, or a week, in which a gigantic ogre whirled me in a mesh sack over his head, around and around and around. That was not a day, or a week, when the tremor in my eyes never stopped and everything jerked and conspired to make me vomit until I feared these spasms would gouge out my most tender tissues and hollow me.

Later I didn't describe my symptoms because I had never wanted to be anyone's anatomy class lab frog. Displays of compassion did not follow on my self-exposure, but rather a teenage fascination with gore. The audience demanded the self-testing thrill a horror film provides: "How gross can a human body get? Could I take it?" People wanted to be able to say, "Oh, I could imagine that. I could deal with it." But as a formerly able-bodied person, I knew. If they thought someone well could imagine these symptoms, they were wrong, and if they thought they could deal with them, they were more wrong still.

Lance and Marsha taught me new reasons to censor my symptoms. I met them in a discussion group. Lance was ignoring everything I had to say. This didn't ruffle me; as an articulate female, I was used to being ignored by a certain percentage of men. With enviable vigor and focus, Marsha was working her crippling depression into every discussion, no matter the topic. After two semesters, I would never learn Marsha's favorite color, her greatest joy, even what she thought of Monica Lewinsky. Instead, Marsha supplied enough data that I could recount her symptoms more readily than my own.

One day, asked to account for my unpredictable absences, I "outted" myself. My disability was invisible, a beautiful movie disease; I might pass as able-bodied. I did use a cane, but many read that as a fashion statement. Even at my worst, vomiting and crashing into walls, I was understood as drunk and disorderly more often than ill.

Lance began paying intense attention to me after my self-outing. Feeling abandoned by old friends, I supped greedily. He made nightly long distance phone calls during my out of town forays to experts. He relayed minute details of my condition to his friends with a clinician's accuracy. Further, Lance urged Marsha to bond with me. Marsha introduced herself by announcing that her parents had bequeathed her so many goodies not out of love, but to pressure her; "They're why I'm clinically depressed." My codebook was useless in providing a comeback to that icebreaker.

Lance and I were different. He had grown up with maids; I had been a maid. Addictive, though, were our epic discussions of mutual obsessions: politics, movies, family, food, and our competition for the best words to vivify our visions. Lance reassured me that unlike most men, he didn't find my intellect or independence "repulsive." The richness of our dialogue, and my terror of further abandonment, inspired me to forgive or attempt to work through the constant tension between us. "I'll just put your MRI on my plastic," he said, casually. We'd known each other only two weeks at that point; as yet ignorant of the rate of exchange in this new economy, I demurred. But he did step in, uninvited, and "help" in scores of other ways that I found humiliating and invasive. I had to say, more harshly and more often than I wanted: "Stop. I am not the infant your 'help' makes me out to be." But I hung in. I thought this tension and our differences, like my illness, were incidental to our contact, not central, that they were the thing to be overcome, not our telos, not our fated, defining end.

Finally, abruptly, hot on the heels of his confession of love for me, Lance broke off all contact. Marsha would be Lance's new project. I was shocked. "She's just using me, but what can I do? She needs me so much," Lance had once said of her. I had never learned to couple such assessments with the erotic. Apparently I was wrong; Marsha's invitation: 'Love me. I will never burden you with my autonomy; I will never breathe a hint of that reviled quality, personal power,' was more successful at retaining place in community, with Lance, anyway, than my own had been: 'Let's touch. And let's touch our cores; not just our disease.'

After Lance and Marsha, I developed a new suspicion of others who showed too much curiosity about my symptoms. Shelby Steele argues that the Civil Rights movement deprived white Americans of innocence, and elevated victimhood to virtue. Marsha's disproportionate share in America's sugarplum stock market in a world of war and famine might have caused her grief. She did not equalize these burdens by sharing her wealth or joy. Rather, through disease, Marsha appropriated a Third World aura of victimization. When someone asked for my symptoms, I wondered: was he demanding that I strip and pose for medi-porn; was he a disease groupie? Would he, like Lance, exploit association with the afflicted as a negative number that brought down his own too high score for having been born rich, lucky, and ethnically correct? Did she want to play hospital with me as did Marsha, who, sick with good fortune, clung to symptoms as antidote against cursed privilege and power?

I could not play that game. I was an outsider who fought disease tooth and nail, the same way I fought every obstacle keeping me and mine from the table. I feared medi-porn fetishists who needed me to be my crippling symptoms, who "loved" me as long as I was limited to the prison cell of what I could not do. I came to resist those who foisted on me virtue denied me as an able-bodied, striving, politicized female. I came to detest the much longed for warmth and companionship that was withdrawn as soon as I revealed that I was still my own woman.

"What's it called?" my audience demanded, with the urgency of God demanding logos of Adam. Several doctors suggested a brain tumor. As time went on and I never earned the funds for the MRI, but remained alive, I scratched that off the list. MS was frequently suggested, but I didn't experience the double vision typical of MS. Cerebral syphilis was ruled out with blood tests. My own best guess, based on paperback dictionaries of symptoms I researched in the public library, was that I had a vestibular disorder. These are malfunctions in the site of hearing and balance equipment, the inner ear, a marble-sized membranous labyrinth packed into the temporal bone, the hardest bone in the body. I displayed the signature symptoms: nystagmus, a spasmodic, involuntary jerking of the eyes; tinnitus, the maddening mechanical siren unceasing in my ear. Again typical, I was, suddenly, stone deaf to rainfall, birdsong, summer night cicadas, crickets, and katydids. I could make out her words, but I had lost the timbre that once transformed the voice of my friend Amanda, a singer, from tool to art.

"Vestibular disorder? I've never heard of them. What's their cause?" I was asked.

"Accidents. Injury. Drugs. Viruses. Bacteria. Autoimmune reactions. Allergies. Heredity. Aging. Surgical complications. Scuba diving. Plane travel. Loud noises. Strokes. Weightlifting. Childbirth. Much of this has to be theory. Even MRIs can't see what's going on in there."

"Wow," they'd say, as if I had revealed some essential clue. "So, did you do any scuba diving two years ago right before you got sick?"

"No," I'd reply. The mystery remained. Why, two years before, had I suddenly been felled? My story lacked medical symmetry, the scientific logic of cause and effect.

"How do you cure those vestibular disorders, anyway?" In short, what happy ending may we anticipate before we decide whether or not to buy a ticket?

"I haven't found anybody who's got a sure cure, yet," I would reply. "There are surgeries, drugs, rehabilitation. But I'm still fighting with the Health Center to get adequate attention."

And so I further frustrated my audience; George Clooney did not star in this episode. Oh, I could tell of doctors, all right. I had visited the campus Health Center several times in just one semester. I could talk about the doctor who said it was all caused by sex problems, and he could cure me if I just kept coming back to him. There was the nurse practitioner who pushed Prozac with a Willy Loman stridency. When I reported a static-like sound in my ear and that my eyes would not stop racing back and forth, she assured me that the invention of outlandish symptoms was a sign of mental disease. Then there was the Health Center's director. When told that I'd lost twenty pounds from vomiting and couldn't bare so much as an ice cube on my tongue, he suggested an oral anti vomiting medication as cure-all.

I'd collected enough doctor stories to paper Kafka's hell. But I would collect no more. My life savings were rapidly running out, and the government washed its hands of me. The Social Security Administration, in the person of its subcontractor, "Besco Medical Services," temporarily set up in a strip mall, had examined me for a full ten minutes, and found nothing wrong. My perfect health was communicated in government documents that misspelled medical terms so badly as to make them unrecognizable.

It was more than postmodern illness that shattered my old friendships, I know. The anger in my friends' voices informed me that though medical science could not provide me with a cause for my body's collapse, the cause was obvious.

There was a time when Gretchen, an school buddy, could call and say, "Let's go to the mall, the beach, or Suriname," and I was so assiduously void of ambition, that I'd say, "Okay, fine, let's." Low expectations are an adaptation that has served have-nots well. Gretchen's apathy was her greatest gift. She was one of the lucky ones who achieved the American dream by marrying the richest suitor, taking the highest paying job for the most amoral corporation, and never losing a night's sleep over absent love or meaning.

This disease, my friends suggested, when they told me to just quit and come home, was punishment for unseemly desires. I was a working class woman. I was a Polak, for Christ's sake! Just who was I trying to kid? I was rushing things. My mother had cleaned houses for a living. I was supposed to have become a secretary, or a grade school teacher. Eventually, my children or grandchild could be Ph.D.s. Time to quit it. Time to come on home. To lay in bed for a while, and then, when I'd recovered from my improper appetites, I could get that job at the mall.

I didn't know how to tell them without sounding like a fundamentalist, like a martyr wanna-be. Grad school was the fruit of a conversion experience. I wasn't just killing time until the whistle blew and I could return to my real life of beer and TV. I would do whatever I could do to drag marginalized people's words and bodies into the Ivory Tower. I didn't know how to communicate to my old friends: I care about this so much, I am willing to suffer for it. If it takes me a year, working around puking and paralysis, to research and write one article, I will take the year, but I will complete the article. I certainly didn't know how to communicate that I would rather die than return to intellectual surrender.

In long distance phone calls, Gretchen and I traded updates of accomplishments. During Gretchen's turn, she reported: "I scored a raise … I went to a party and met Mick Jagger … I gave birth."

I would coo and commiserate and praise. This was not hard; we all know birth announcements are applause lines. Then I would respond with my own milestones hoping Gretchen could share some of my joy, understand some of my dream: "I've been learning stuff I never knew about conditions for immigrants in the coal mines. I found this amazing out-of-print book about Slovak steelworkers. I wrote an article that I am pretty sure says stuff that's not getting said anyplace else." Gretchen's silence was my reward. Increasingly, the life I had chosen seemed to be invisible to her. Not just peculiar disease, but also my own peculiar joy found after a lifetime of empty search, stretched to breaking words' capacity to carry meaning between us.

I achieved intimacy with the back of the couch. The assertive brass of Wednesday's midday had traveled ceiling-ward and turned spare threads to jewels; then the plaid became a daguerreotype; finally silver from a waning moon sifted over me. I knew I should close the curtains. That's what a good woman does, my mother had taught me; she closes the curtains at sundown. I thought I should pee; I could feel pressure on my kidneys. I thought I should sip some water to rehydrate. I didn't dare risk any of these adventures. My shattered sense of bodily integrity would interpret a trip to the bathroom as space travel.

I craved a human being. Whatever it is that a human being brings into a room. Smell. The least measurable rise in room temperature. A change in the flow of air, otherwise dictated by unliving things: a radiator kicking on at night, the upstairs warming with midday. The transport of maybe a bit of leaf mold on the heel of a shoe. Sound that is something other than the refrigerator spasmodically growling into life; beams creaking and sighing; my keys sliding down the shoulder strap of my pack and gently crashing into the back of the kitchen chair. I wanted some sameness. Of my species. I wanted someone to take the risk of being present with disease without a game plan. Not knowing the cause. Not knowing the cure. Not knowing anything. I risk this, always. I am here, present with disease, not knowing anything.

"I was sick, and you visited me." Jesus didn't say, "I was sick, and you diagnosed me; you provided medical cause and effect; you rode to the rescue." Just: I was sick; you showed up; you stayed.

Once, a long time ago, I was dying in Nepal. Later, when I could make it in to Kathmandu, the Peace Corps doctor sent a sample of my blood to the Centers for Disease Control. Tests would reveal I'd been fighting erysipelas. At the time I had no such diagnosis. All I had was a thermometer reading a hundred and five, a red, cellophane-skinned leg swollen to twice its normal size, and the sensation of being on fire. My neighbors had no diagnosis, either. A girl heard a whimper in the dead of the night; next the whole village was in my room. Women kept up a bucket brigade of rice; they knew I couldn't eat. Inedible pigments and flowers were scattered over these platters, as over the food offered to idols. The shaman rang, banged and chanted interminably. I fooled them and myself and quickly and completely recovered. My neighbors made me prove this by walking around outside. If I ever spent too much time in my hut, even just to sleep late or prepare lessons, there would be the knock at the door. "Miss? There is no smoke coming from your kitchen fire. Come and sit with us."

My Bloomington walls are not whimper-permeable. No smoke proceeds from my chimney, and I have not left my house in three days. My Bloomington neighbors do not satisfy me. I need a small girl. A small Nepali girl.

Thursday I called a neighbor at her work number. I knew full well that she was working on big, important issues, as I had once hoped to do. Her issues had names: racism, sexism, educational equity. I squirmed with shame to impinge on her time. I was not gay, this was not AIDS and my suffering, and attending to it, would strike no resonant blow. I was not old and my puking in a bucket and inability to empty it or earn a living was not a story about the direction Family Values were taking. Slaking my thirst would mean: water against a very dry throat. It would not cast anyone as hero in any wider epic. There would be no film at eleven.

"Vivian?" I tried not to sound sick, to "make small sounds" because I know that is so melodramatic. But I couldn't help it. I didn't have the energy to sound normal.

"Yes, this is Vivian."

I knew to ask for something both specific and concrete. I knew just asking for her would overwhelm. "If you're going to go by the store, could you pick me up some seltzer?" Each group of words came clustered in a pant, and I panted between for air.

"I could do that."

She was there in half an hour. "Can I pour you some?"

"I can't move. But if you put it in the fridge, I'll drink it as soon as I can."

"Would you like a light? TV? Radio?"

"Not really."

"Well, I guess there's nothing I can do for you then. I wish there were something I could do." Find the crank shaft and oil it. Kick the tires. Reset the gauge. "Well, I guess there's nothing I can do for you then. I hope you feel better–"

"Yeah, me too."

That long ago far away Nepali village had not yet evolved to mechanical excellence. They knew that there was nothing they could "do." I don't think that "doing" – fixing, jiggling, whacking, taking charge of – anything ever entered their minds.

They entered my bedroom, without knocking. They squatted on the floor. They shook their heads. They made small sounds. They stated the obvious, "Oh, Miss, our Miss is sick. Oh, oh, oh." They looked as scared as I felt. Some of them, the old women, looked as sure and calm and yet aware as I wanted to be. They never left until I was well.

I had wanted Vivian to touch my back, between my shoulder blades. At least, I wanted her to pull the curtains; the flooding moonlight shamed me. I didn't want it to be an asked for touch. I didn't want her to say, "Is this the spot? Am I doing it right? Are we achieving the desired result?" I just wanted it to happen, like the traverse of light up the back of the couch.

Sometime the next day, guess it was day – guess it was next, there had been a pattern of light and darkness and light again on the back of the couch – the phone rang. I had lost the assistantship. Next year's ten thousand dollar tuition bill would be mine to pay.

I decided that a gun would be best. I wanted to do this right: no waste, no mess, and something good for somebody. I would, to the end, live up to the best of working class Polish values. I didn't want finding my corpse in a stream: water puckered, duckweed wreathed, my finger tips all pruney, or me, smashed like a raspberry under some very tall building, to provide the more fortunate with one final opportunity to feel superior. I would have to find a way to make my corpse attractive to the forces that control sidewalk hoses and the wheels that ritually transport the dead. I could be an organ donor.

If I did it with pills, my organs would be poisoned. If I jumped off a building, they would be pancakes. Unacceptable. So I decided to shoot myself in the roof of the mouth. That way my corneas could be transplanted. I loved the idea of someone once blind suddenly entering a world of color and light.

I scanned the yellow pages for a picture ad and chose the nearest shop. It was at the corner of Courthouse Square. Near the staging ground for the Fourth of July parade in which World War II veterans had marched under lightening and hail for the fiftieth anniversary of their victory, and brought tears to my eyes – Daddy was a veteran. Near The Bake House and the best, if prohibitively expensive, bread in Bloomington, and a chocolate desert called "BĂȘte Noire." Near corners you'd feel safe sending your kid on an errand, one could buy: handguns; phone calls in the night; riderless black horses; irrational and inconsolable sobbing; a door marked, "Exit;" and an end to waste.

A woman answered. All I have to do, she explained in the shrill and brittle timbre my New York metro sensibilities could identify only as "fake smile" voice, is fill out a form and wait ten days. Ethel Mae, or Bobby Sue, or whatever her name was, sounded like a cricket on Dexedrine; not just "Howdy, stranger," but "We're gooood people and here's some more corn syrup for the topping of your persimmon pie."

"Are you a felon?" she asked.

I laughed. "No."

"Well then it'll be dead easy. It's easy to buy a handgun. We have a complete s'lection. The forms aren't difficult and we can help you fill 'em out. We have all the proper forms. We do it all up, just like you're s'posed to, and then you can take your gun out and shoot it, you know, cause it's fun to do that, take it out to the range and shoot it. Our customers like that just so much..." I hated to admit this: I liked her; I wanted her. She had such a cheery easy vitality. She made her living selling something that people will fight for. She would never have to struggle, like me, conniving her customers into agreeing that her wares were desirable. Who doesn't want red flashes of flame and smoke and undeniable power? To be able to separate the good guys from the bad with snap, crackle, and pop?

Organ donation, oddly, was harder.

"You just have to make sure your family members approve–"

"I have no family–" I said quickly, to abort discussion of the taboo.

"Your doctor then–"

"Look, if I could afford another doctor – C'mon, isn't there just some form?"

"You must have somebody–"

I would not think about what she was, perversely, sadistically, trying to force me to think about. "No. I'll repeat my question…"

Finally we figured out that signing the back of my driver's license was enough.

I hung up. I was ready. Clearing the last hurdle had an unexpected effect.

'Did you really survive so much crap just to end up like this? What about that ready black and white girl, in stiff old snapshots, in her brothers' hand-me-downs, smiling and spreading her arms wide to eye-squint bright four petaled forsythia? You made so many promises to her. Remember your heroes: Nelson Mandela, Vaclav Havel, Helen Keller –'

'Had amandla, Had Olga, Had Annie Sullivan pouring words into the palm of her hand. I have the back of a plaid butterscotch couch. I'll end up on the street. I don't wanna have to do this on the street.'

I decided to kill time reading until I could make the trip to the gun shop. My eyesight was slowly returning but still imperfect. I needed a friendly paperback that wanted to be read, with big type, not big words, and a flexible cover I could wrap up in bed with. My landlady's bookshelves were pews of inspiration. I reached behind my head and grabbed: Love, Medicine, and Miracles, by Bernie Siegel.

I thought I'd read a page or two and then break to puke or faint, as usual. But as I cajoled my vibrating eyeballs into the blessed act of reading, I felt as if the sun, progressing up the back of the couch, had suddenly reached out and grabbed me.

The book's cast of characters: people whom I'd worked the hardest to get away from the quickest, people in wheelchairs, people who smell bad, people who drool; these people were suddenly sirens inviting me to life. There were people who spoke the same language I now did. Here they were, using that language. I felt a rush of forgiveness for my disappeared friends. Before I got sick, I wouldn't have understood, either. My plunge into this new community, the stories in this book, demanded that I retell my own story, no matter how taboo its themes; here was an audience that might understand.

In seeking a cause to the effect of my illness, MDs had urged me to confess that two years ago I had gone scuba diving or given birth or received a severe blow to the head, and that it had just slipped my mind. I could provide no such data. I could report that two years ago, in the semester before my brain's fluids exploded into my inner ear, I moved to Bloomington to begin my Ph.D., I read over a hundred books, I wrote five reports, on which I received the necessary As, I attended twelve credit hours worth of lectures, and I schmoozed through vats of wine and wheels of cheese. That semester's other event was deemed immaterial. I had been requested by my Bloomington housemate, another graduate student, not to cry about it, as he had important papers to write. I had been informed by my professors that it was not cause enough to request an extension on assignment deadlines.

"Daddy's dying." That answering machine message was the first time I had heard my sister's voice in years. I had just arrived in Bloomington, but, through hard scrabble and ass kissing, I had gotten myself the necessary assistantship. "You can't leave," my boss, a powerful professor, said. "I need you to do some typing. And I know how much you need this assistantship, and how much you want to stay in this school." Her memory was accurate. I had told her that this university's Folklore department offered me a unique opportunity to study the artistic creations of common people. I had thought my dedication, desperation and focus might be strong selling points that would snag me the needed assistantship. I had never suspected that they would come back to haunt me in this way.

My ability to transfuse the marginalized voices and people I so loved into the academy depended on my refusal to visit the deathbed of my father – a real life, marginalized person. An immigrant, a coal miner, the kind of man who was the subject of the kinds of books I was paying so dearly to read. And my presence back home would be an empty gesture, in any case, unwelcome by my family. I was an outlaw. I committed defiant transgressions like going to grad school when I should be settled down.

"You have to do what you have to do," my parents used to explain when I was a child and their life choices seemed unbearably, inexplicably hard and harsh to me. "You have to do what you have to do:" it repeated in my head as I rode the train back to New Jersey and considered all I was losing, and what I would soon confront. I began to drift off, and suddenly I was cradling my father's head in my arms and saying, "I love you, Daddy."

And then I'd wake up. Daddy had mined the bridges that could have carried my love. I hated him, thinking hatred might exorcise everything. I'd drift off to sleep... "I love you, Daddy." At eleven p.m., just as my train was pulling into New York's Penn station, back home in New Jersey, my father breathed his last.

After the funeral and hearing relatives say, "Surprised to see you here," I rode the train back to a job and a dream I might no longer have. I meditated: "You must become very hard. Your lungs are hornblende; your liver a ruby; your heart a giant diamond..." up the Moh's scale.

At first I assessed the professor's response to my having missed four workdays to attend my father's funeral as the bad mood of someone with power interacting with someone who has none. With each day her vengeful punishments and humiliations spiraled out of the range of the sane. I began to understand that what was happening was very ugly and very bad, and that for me, there was no way out. First, I packed my cardboard boxes. Then, in solidarity with whomever would next be assigned to that professor, I approached a dean. "Your impressions are correct," I was told. "She's been ruining people for years. You can't leave. We need someone to testify against her. You see, she's an African American female, and this won't be easy. We've been waiting for someone like you. Someone with nothing to lose."

"Nothing to lose?" I asked.

"No pension, no tenure, no position."

"Oh," I said. Perhaps they had not read my statement of purpose. Thus I was recruited by strangers, Americans, WASP males in suits, to do my part to undermine their expedient perversion of campus diversity, and to dance precipitously close to betraying the life's goal for which I had sacrificed everything. "Thank you, miss, you've been very helpful" was all they said at the end of each interrogation.

About this time pundits were announcing that America was too clean to get embroiled in the "primitive cauldron" of Bosnia. All the forces that made that war: blood, feud, family, men with power drawing lines to either cheat or reward others who had none, were being fought by university officials over my live body, through my aspirations, and my grief. At night I had dreams of being rolled over by giant waves. And then I got a disease, perhaps a "vestibular disorder," that took away my ability to stand up straight.

My medical mystery made sudden sense, within the frame offered by this book, in this new language. I was imposing one story on my body and my body was responding with a story of its own. My neurons were not betraying me; they were alerting me: there is a crisis; respond. To heal, to get what suddenly seemed possible and above all else desirable, I had to come up with a new story, and to find a new community of audience and performers.

Before I drifted off to exhausted sleep I asked myself if I were using this happy book about cancer and AIDS and multiple sclerosis as an excuse to successfully delay the inevitable. I hoped so.

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