One day when I was fifteen, my aunt announced, “This boy’s got too much thyroid.” She had noted the swelling in my throat, my weight loss, my bulging eyeballs.
Off to the doctor I went. I sat on his examination table, my legs swinging, my heels banging the table’s metal end; I was always jazzed in those days — restless, irritable, unable to sleep through the night. The doctor stepped up close to me. His first name was Gilbert, which I thought was the sort of name a very decent man would have. He put his hands on my knees, and I stopped swinging my legs.
“Are you nervous?” he asked. He was trim, with a thick head of brown hair parted neatly on the side, the sort of man who would have looked spiffy in a Brooks Brothers suit and penny loafers. I’d heard he had once been an army doctor, and I could believe it. He looked spit-shine and by-the-rules in his navy blue slacks, the creases down the legs razor sharp; his polished black oxfords; his white medical jacket, the knot of his necktie poking out over the top.
“Nervous?” I said.
He put his hand to my throat, and his fingers pressed my windpipe. “You seem a little on edge.” He stared at me over the tops of his half glasses, looking first at one eye, then the other.
It was 1970, and our small southern-Illinois town was filled with men like him, men who were stalwart and beyond reproach, standard-bearers of right living: the basketball coaches, the principal, the bank tellers, the shoe salesmen, the ministers. I envied the confident and easy way they moved through the world. I despised the way they looked at me and — I believed — found me derelict and wanting.
And I was. I was a shoplifter, a burglar, an arsonist. I stole from stores. I broke into schools and garages. I set fires. I had never meant to become this kind of person, but after years of enduring the storm of my father’s rage (he whipped me with his belt, and as I grew older we shouted vile things at each other and sometimes came close to blows), I had begun to express my own anger. I had careened into a life I couldn’t have imagined the year before, when I had been a straight-A student and captain of the freshman basketball team. Part of me reveled in my new identity, and part of me wanted to conceal it from the world, particularly from men like this doctor, whom I secretly wanted to please.
He kept staring at me. How can anyone, no matter how kind and well-meaning, study you over the tops of half glasses and not appear critical?
Finally he let go of my throat and took a step back. He held out his hands, palms up, and told me to put mine on top of his. “Relax your fingers,” he said. “Don’t be so stiff.” He slid his hands back until his fingertips were below my own, touching them ever so slightly. I’ve never forgotten the brush of his skin against mine. It was a tickle, like the wings of a butterfly if it were to settle on your cupped palm, wings opening and closing, skimming your curled fingers.
The moment was so delicate and intimate that I suddenly felt shy. I wanted to pull my hands away and hide them, for now my fingers were trembling and skittering about. I tried my best to hold them still, but I couldn’t. I bowed my head, ashamed. My body had betrayed me, revealing that I was damaged goods. Though I was a hoodlum, I still had enough conscience to feel guilty. I believed that my body’s breakdown was a clear sign of my diseased soul.
Before Hippocrates and his Corpus — a collection of some sixty medical treatises that marked the birth of modern medicine — the ancient Greeks investigated illness by asking the question “Who causes this sickness?” The answer was often a capricious or malevolent deity. The Hippocratics dissolved this notion, professing instead the theory that the human body was comprised of four humors: blood, phlegm, black bile, and yellow bile. If these fluids lost their natural balance, illness would result. From that point forward, physicians sought to explain sickness naturally rather than supernaturally.
Still, the suspicion lingered among the religious that the body’s ills were evidence of the soul’s imperfections. Although illogical, this belief in God’s punishment illustrates how difficult it is for the healthy to empathize with the unwell, and how wide the gap can be between the two.
At the time my thyroid gland was overactive, I knew a young man named David, who went to my family’s church. David was a few years out of high school and newly married to a girl with a bright, round face and a pleasant smile. He was the second of four brothers. The other three had inherited their mother’s red hair, her weak knob of a chin, her freckled skin, her cackling laugh. They were, my father often said as we drove home from church, a bubble past center, a few bricks shy of a load. “That David,” he said, “he’s the only one of those boys who’s got a lick of sense.”
David had his father’s blond hair, which he kept neatly trimmed and combed. His skin was smooth and golden in summer, and his arms were muscled from farm work. Even now, when I see fair-haired Mormon missionaries riding their bicycles down the street, their white shirts gleaming in the sun, I think of David. He often assisted with the church services — reading Scripture, leading prayers, serving Communion — and when he walked to the pulpit, his step was confident, his spine straight, his posture erect. When he came down the aisle, holding the serving tray with its thimble-sized cups of grape juice (Christ’s blood) or the silver platter with its cracker square (Christ’s body), he did so with an easy grace. He was comely and devout, at peace in the small church where each Sunday voices rose up in song and preachers invited the lost to “come home.” The building itself was modest and plain, a clapboard box with a gambrel roof, but it was meant to be a place of miraculous redemption, a holy house where the penitent could be saved.
One Sunday, during the hymn that preceded the preacher’s sermon, David started to tremble. He was sitting a few rows up from my mother and father and me, and we were singing “In the Garden” when suddenly the hymnal began shaking in his strong hands. He leaned forward at the waist, and his hymnal rapped the back of the pew in front of him. His wife put her hands on his arms and tried to hold them still.
We kept singing: “And he walks with me / And he talks with me / And he tells me I am his own.” But really we were watching, some of us sneaking glances and others making no attempt to hide their curiosity. David was rocking back and forth. He shook off his wife’s hands, folded his arms across his chest, and tried to pin them down himself, but he couldn’t. Then his head fell back, his eyes closed, and he crashed to the floor, his body convulsing so violently that his legs and arms banged against the pews.
David’s father and older brother came quickly to try to hold him still. When he was finally calm, they carried him from the church. His eyes were closed, his body limp. As they passed our pew, his dangling hand brushed my arm.
Our singing had stopped. The preacher came to the pulpit and scolded those who had gawked at this unexpected and horrific episode. He was a tall man, well over six feet, and he had a rich baritone voice that at that moment was the voice of authority. “The family is seeing to what’s happened,” he said. “Our job is to be with God.” Then he said a prayer for David and his family and began his sermon.
For a good while thereafter, I couldn’t get the image of David’s flailing body out of my mind. Ordinarily the embodiment of grace and ease, he had twitched and writhed. He had become chaos and spectacle. If it could happen to him, it could happen to anyone. None of us was safe. What affected me most was the fact that his disintegration had occurred in public; we would never be able to look at David again without remembering the way he had come apart.
It happened again the next Sunday, and the Sunday after that, and several Sundays running.
The rumor was that the doctors could find no physiological explanation for the seizures, and the theory began to spread that David was possessed, that demons were at war for his soul.
By this time, I was taking an antithyroid drug that was blocking my thyroid’s hormone production and returning balance to my system. Consequently, I believed in rational explanations for the body’s ailments. Still, a part of me couldn’t help thinking that what people said about David might be true: that he had become weak in spirit and had invited demons to fill him. After all, his seizures occurred only in church — a sign, some said, that he was tortured by guilt. No matter the physiological or psychological reasons, he was on display and, as a result, had become the object of our pity and curiosity and tenderness and disgust. On those Sundays when his seizures overcame his self-control, there was nowhere for him to hide. Watching him, I, too, felt exposed. I feared that my shy glances were proof that I shared his condition; that I, like David, was wicked.
When I was forty, I began to suffer corneal erosions. My left eye went dry, as if I were a man twice my age, and at night, as I slept, my eyeball scraped against the inside of my lid and scratched away minute bits of tissue from the cornea, leaving furrows visible only in the glaring light of an ophthalmologist’s slit-lamp. Night after night, I awoke screaming in pain.
Imagine a grain of sand in your eye, and then magnify that sensation a thousand times. Imagine someone rubbing sandpaper or an emery board over your eyeball. Imagine rust, salt, mud when it’s dried and cracked and flaked. Imagine all of this in your eye and no way to wash it out.
I’ve kept myself from writing about my eye for seven years now because I haven’t been able to muster the courage to revisit those days. I haven’t wanted to see myself again, crouching on the floor, my eyelids fluttering: wanting to close, wanting to open, each position agony. I’ve had no desire to hear again the growls in my throat, the keening whine, the sounds a wounded animal would make. I’ve tried to forget the urge to claw at my face or to beat my head against the floor — anything to stop the pain. My body has spent seven years attempting to unlearn this misery, wary of any reminder, anxious to flee. To call it up now fills me with fear and dread, but I can’t look away. I’m a rubbernecker at my own misfortune, and I don’t know what to feel. I want the horrible memory gone, and, at the same time, I want to describe it to you, every bit of it. I want to describe it to myself. I went to sleep every night for a year unsure of my rest, knowing that sometime before dawn I would likely wake with a start, my eye scraped and bloodshot, the world a blur to me, as if it wavered behind a curtain of fire.
“Hold your eyes open and look into the light,” the ophthalmologist told me when I finally sat in his examination room.
My chin rested in the cup of the slit-lamp’s support. The room was dark, but the lamp’s intense light blazed through its narrow opening and penetrated my left eye. It was a blinding white light: the glare of sun on chrome, the burst of a camera’s flash, the brilliance of snow cover on a sunny day. It was impossible to stare at for long. When the ophthalmologist finally swung the slit-lamp away from my face, I was relieved.
“Mr. Martin,” he said, “you’re experiencing erosions of your cornea.” He said this cheerfully, as if celebrating how quickly he had been able to diagnose the problem.
The diagnosis interested me only if he could answer two further questions: First, why was my cornea eroding? And second, what would happen if the condition persisted?
“Your eye is very dry.” The ophthalmologist wore a long white lab coat. When he sat on his low swivel stool, the hem of the coat nearly touched the floor. “You should start using liquid tears and an ointment at bedtime.”
“Will that stop the erosions?”
The wheels on the stool squeaked as the ophthalmologist rolled over to his desk. “Well, we’ll certainly hope so.”
“And if it doesn’t?”
He looked up from my chart. “The good news is the cornea is the fastest-healing part of the body.”
“But I don’t want my cornea to be injured at all. Corneal and erosion are two words I don’t ever want to hear together.”
There were treatments, he explained, but they were tricky, given the fact that once the cornea has eroded, the eyelid is more likely to catch on the scar tissue, thereby reinjuring the surface. The key is to give the cornea time to heal completely, leaving the surface smooth. The first step would be to fit me with a clear contact lens to be worn for six months. After the lens was removed, the ophthalmologist could insert plugs into the openings beneath the bottom eyelid, where excess tears drained, thereby irrigating the eye more fully. If neither of these options worked, he said, he could do a corneal implant — take away my own cornea and start anew.
“I’ll try the liquid tears,” I said.
“Good luck,” he told me, again with that smile that I desperately wanted to trust.
All of this was happening in Harrisonburg, Virginia, in the middle of the beautiful Shenandoah Valley, where my wife, Deb, and I had moved so I could teach for a year at James Madison University. The mountains and the forests, splendid with color come fall, had drawn us from the flat plains of Nebraska, where the prior autumn my eyes had been tremendously dry. I had rubbed at them while trying to read, had splashed them with water. But I’d always slept through the night. Then, when winter came, the problem disappeared and didn’t return until we moved to Harrisonburg. The year we spent there was pure anguish.
Although I had long ago outgrown my adolescent inclination toward criminal behavior and was now one of the good citizens I’d secretly wanted to please when I was a teenager, I still felt morally suspect when this chronic condition appeared like a scourge levied against sin. Yes, it was illogical, but I couldn’t help but wonder about my own culpability. With the move and the pressures of fitting into new surroundings and performing well at a new job, my nerves were often on edge. Perhaps I was too worried, too fretful, too pessimistic, and had caused a breakdown in my own immune system.
If not for Deb, I would have been completely miserable. She was the only person I could look to for empathy. But even she couldn’t understand the pain I felt when my cornea eroded. It was unlike any pain I had ever experienced — including the time when I was a child and I fell running up the porch steps and cracked my tooth on the cement, and the time my cousin accidentally hit me in the eye with the back swing of his baseball bat. To make matters worse, I was frantic with frustration because there was nothing I could do to protect myself. It hurt to keep my eyes open; it hurt to close them. I was totally helpless.
Because Deb couldn’t grasp the pain, she couldn’t understand the crazed way I behaved when I was experiencing it. “It was hell,” she tells me now when I ask her what she remembers of those days. “Sometimes you acted like you were crazy.” (I was. Crazy with pain.)
Imagine that you have lain down beside your husband or wife and fallen into the timeless drift of sleep only to be shocked awake by your partner’s anguished screams. How do you accept the sight of him or her turned into a lunatic? To Deb it must have seemed that she had awakened to a Greek tragedy: Oedipus gouging out his eyes; Prometheus, bound and unable to protect himself from the vulture’s pecking. How could she make sense of the fact that I, who had first come to her so shyly and tenderly, was now a savage, raging against a pain that she couldn’t take upon herself and make ours?
One night, during an attack, she spoke harshly to me. I was on my hands and knees on the bedroom floor, weeping, calling out to God, growling, jerking my head about. “Oh, stop it,” she said. “Don’t be so hysterical.”
She said it as if she were an annoyed and impatient stranger, and I felt wounded and betrayed. I understood for the first time that my pain was mine and mine alone. No one would ever feel it with me, not even the person I loved most.
“I wasn’t mad at you,” she tells me now. “I was just angry because I couldn’t do anything to make you better.”
When I wasn’t in pain, I couldn’t stop thinking about the time my cousin hit me in the eye with that baseball bat. I remembered the way my eye swelled — it would have been my left eye, given the fact that my cousin batted right-handed. The ophthalmologist had told my mother to keep warm compresses on the eye to reduce the swelling. When she laid the warm washcloth on my eye, I’d felt a pain very similar to the pain I experienced when I crawled on the floor, keening, and Deb could do nothing to save me.
The liquid tears didn’t work; the corneal erosions continued. Winter came, and again the problem vanished. How sweet were those few months when I was able to enjoy the sort of mindless rest I had taken for granted for so many years. How grand it was to hold Deb close throughout the night, the heat of her body soaking into mine. Once again, I could relax and wake each morning refreshed.
Then spring erupted. The crocuses and daffodils and hyacinths bloomed. Leaves unfurled, and the trees were bright green with new growth. The air was redolent with the scents of the moist earth, wild onions in the pastures, pines and cedars on the mountain slopes. Deb and I slept with our windows open.
One morning, around four o’clock, I felt the familiar grit in my eye, and soon I was writhing on the floor.
“It’s allergies,” I told Deb when the pain had finally eased. “It has to be allergies.”
“It can’t be allergies,” the ophthalmologist said when he examined me from his swivel stool. “If it were allergies, you’d be having the problem in both eyes.”
Why then, I asked him, was my condition always worse in autumn and spring? And why in winter, when the trees and flowers and grasses were dormant, did the erosions stop?
“Mr. Martin, your condition could have a number of physiological causes. Perhaps your general practitioner could help you.”
“My general practitioner sent me to you.”
The ophthalmologist took a breath and let it out. “Yes. Well.”
It was clear that he had little interest in diagnosing the cause of my condition; he was more comfortable with treating it. “We could always try the plugs,” he said.
It was a tempting offer, I’ll admit. Why not try any method of treatment on the chance that it might work? What was it that kept me from saying, “Yes, the plugs. Let’s give them a go”?
I could tell you that ever since my cousin had hit me with that baseball bat, I had been squeamish about my eyes. I had never even been tempted to wear contact lenses because I couldn’t bear the thought of touching anything to my eyeballs. I even had trouble holding my lids open long enough to put in the liquid tears. The ophthalmologist’s exams with his slit-lamp were torture. The thought of any surgical procedure involving my eyes, such as the one to insert the plugs, appalled me.
All of this is true, but it isn’t the whole story. It’s the story I told myself then, not knowing that there was another narrative running beneath it: the story of my father and me and our history of suffering.
When I was barely a year old, my father lost both his hands in a farming accident, and the rest of his life he wore prostheses — steel pincers that he opened by contracting the muscles in his shoulders. He had been trying to clear corn from a picker’s shucking box while the machine was running. The spinning rollers pulled in one hand, and when he reached in to save it, the rollers took the other hand, too.
Who could blame him for believing, the rest of his life, that the world could turn on you at a moment’s notice?
As I grew into young adulthood, I came to believe that one day I would suffer a tragedy like his. I suppose I prophesied this as a way of empathizing with him. I imagined myself in his place, experiencing, in some way, his suffering. He was forty-three when he lost his hands. I was forty when my corneal erosions began. In my father’s case, the doctor’s course of action was immediately clear: amputation. There was nothing my father could do about it. With my own condition, I had more control. I could accept or reject my doctor’s suggestion.
So when the ophthalmologist suggested the plugs, I said no. My logic was simply this: I feared the surgery and thought there surely must be a simpler solution to my problem. I guess I hadn’t hit rock bottom yet. I wasn’t desperate enough. I was also dangerously susceptible to the seduction of chronic illness, the place where we become so intimate with our pain that we begin to believe that we were meant to have it. Little by little, it wears away our former healthy life and becomes the only life we have. How can we help but embrace it, while at the same time longing to be free of its hold? I said no to the ophthalmologist because I couldn’t bear the thought of surgery. I didn’t know then that there was more to my refusal than what I was telling myself.
Until the nineteenth century, when Kraft-Ebbing and Freud defined masochism as a pathological aberration, civilization celebrated the connection between physical suffering and spiritual rapture. Suffering was essential to transcending the ego and uniting with the will of a higher power. Pain allowed one to become more human. “Humiliation is the way to humility,” Saint Francis of Assisi said, “and without humility, nothing is pleasing to God.”
As a boy, I learned about physical pain and humiliation from my father, who was always quick to discipline me with his belt. I came to believe that I deserved his whippings because I provoked his anger with my petulance.
One day, my father refused to permit me to accompany my second-grade classmates on a field trip to the amusement park at Santa Claus, Indiana. It cost too much money, he said — money he didn’t have to spare — and he didn’t want to hear another word about it.
“Please, Daddy,” I said.
He pointed his hook at me. “Not another word.”
“But I want to go,” I said.
“Mister, I’m warning you. You’re breeding a scab on your ass.”
We were in the machine shed, where my father was getting ready to climb up on his tractor. I threw a tantrum, crying and whining. When that got me nowhere, I picked up a corn cob and threw it, striking him on the side of his face.
I ran to the house, but there was nowhere to hide, and soon my father was there, his belt already undone and grasped between the pincers of his hook. He lashed me about my legs as I tried to jump away. I was screaming, desperate to make him stop.
“I’ll be good,” I said. “I’ll be good. Please, Daddy. I’ll be good.”
When he was finally done, I lay on my bed, sobbing, my legs stinging from the belt’s bite.
This scene repeated itself countless times when I was a boy, and each time, when the world finally returned to normal — when my father and I were both calm and ashamed — I would go to him and say, “I love you, Daddy.” Sometimes there were tears in his eyes, and his voice trembled. “All right,” he said. “All right.” I sensed that he was saying, the only way he could, that he was sorry.
I believe we reached these moments of contrition because we had touched what Jung calls “the shadow” — the archetype for the part of the self that is weak, sinful, degraded. My father and I were both sorry for our behavior, and until his anger erupted again, we would be shy around each other, and sweet, as if we could love more fully because first we loved so poorly and caused so much pain.
As difficult as it is for me to admit, I still can’t help but wonder whether I unconsciously agreed to the corneal erosions. They were my burden, one that, perhaps, in the illogical realm of the psyche, I was content to carry.
How else can I explain the fact that, not long after the ophthalmologist suggested the plugs, I rejected my general practitioner’s proposal to test my thyroid function? I was still convinced that my problem was caused by allergies. Perhaps, I told my GP, a prescription antihistamine might be worth a try.
My doctor wore tailored suits, like a bank executive, and she wrote with a thick, expensive-looking pen. “I’d never prescribe an antihistamine for you,” she said. “It would dry you out.”
“So you think it might be my thyroid?”
“Might be,” she said. “Or it could be something else. Maybe Sjogren’s syndrome.”
“Sjogren’s? How do you spell that?”
“I’m not sure. I’ll have to look it up.”
She left the examining room and returned a short time later with a thick medical reference book. “Found it,” she said. She spelled the name and started to read: “In Sjogren’s syndrome, changes occur in the immune system. White blood cells invade glands in the body that produce moisture, such as the tear and salivary glands, destroying these glands and impairing their function.”
Watching her with the book, I thought of shade-tree mechanics poring over automotive manuals, or kids trying to figure out directions for a model-airplane kit. When she stopped reading and looked at me, I imagined that she was seeing dotted lines on my body, the way a butcher marks a side of beef.
“It’s very difficult to diagnose,” she said.
“And the cure?”
“There isn’t any. But don’t worry. We can manage it. You’ll be fine. It’s more of a nuisance than anything else. We can treat the symptoms.”
She nodded. “And there are plugs to block tear drainage. Your ophthalmologist can tell you about that. In the meantime, we should check that thyroid. Yes?”
All it would have taken was a simple blood test, a prick of a needle, and then a lab report. The science of blood analysis would have told my doctor whether my thyroid gland was functioning properly.
It would be easy, and cowardly, to say that I refused because my GP, her medical reference book open on her lap, seemed inept, or because my medical insurance wouldn’t pay for the blood test, or because I had accepted a job in Texas and thought, Why pursue this now? Why not wait to see whether a change of climate might cure me?
Despite my misery, I used all these reasons to turn down another treatment option. Crazy? Of course. Wrongheaded? Absolutely. How can I explain my decision? As much as it pains me to admit it, I said no to the thyroid test because some secret part of me fancied the idea of Sjogren’s syndrome. It was exotic and incurable, a nuisance to wear the rest of my life, the way my father had slipped into the harness of his hooks each morning, rolling his shoulders to settle the canvas straps across his back. I didn’t think this at the time, but it makes sense to me now. Why else, at the offer of a potential cure, would I choose to remain a victim?
Suffering was my family’s habit. No matter the ways we found to enjoy life — and there were many — my father’s hooks were a constant reminder of loss and ache. I remember the creases they left on books and magazines and newspapers, the scrapes they gouged into the wooden handles of hoes and shovels and rakes, the marks they made on chair arms and sofa cushions and doorknobs. Even after his death, there were these reminders of his burden, which in a way became my mother’s burden, and mine, too. It never leaves me, the fact that my father had no hands, that he wore those hooks. Sometimes, when I find myself slipping into depression or self-pity, I fear it’s because that’s the only way I have to love him now that he’s dead — to let myself feel his misery, to imagine how he must have felt after his accident. When I was a teenager and there was so much anger between us, it was difficult for me to understand the way the world must have looked to him: suspect and dangerous. Any act of rebellion on my part threatened the precarious balance he struggled to maintain and threw him into a rage.
Perhaps that’s why my father was so quick to believe that David’s seizures in church were evidence of demonic possession. “That boy’s got something bad inside him,” he said.
I imagine it must have been particularly difficult for my father to witness David’s seizures; he knew what it was to be on display, and though he had great empathy for those who suffered misfortunes they couldn’t prevent — farmers who lost their crops to bad weather, women whose husbands ran out on them — when he believed that someone was responsible for his own downfall, he was less forgiving. “He better get himself right,” he said about David.
One Saturday afternoon that summer, some boys we knew were out larking, riding a tractor down a gravel road and trying to set the brake and spin the tractor around. It tipped over instead. One boy was trapped beneath the tractor, his pelvis crushed.
That evening we went to the hospital and sat in the waiting room with the injured boy’s family and friends, waiting for news. I felt shy, dumbstruck by the sudden proximity of death. My father said to the boy’s uncle Arthur, “I think it’s all been worked out — whatever it is that’s meant to happen.”
Arthur was a slender man who wore glasses with clear plastic frames. He was polite and soft-spoken, with a grace and gentility that was rare among farmers in that part of the world. He seemed better suited to be a teacher or a minister.
“A lot of folks,” Arthur said, “have been going down to the chapel to pray.”
My father was sitting across from him. He leaned forward and tapped the point of his hook on Arthur’s knee. I believe he meant it as a kind gesture, but what he said next was anything but reassuring: “Arthur, I reckon God laid all this out a good way back, and there’s nothing we can do but wait to see how it’s going to end.”
That was what my father believed: that our fates had been predetermined and were out of our hands. I imagine it helped him come to terms with his own loss, and now he was offering his belief to Arthur as a comfort, having no idea that it was the last thing a man who was waiting for word on whether his nephew would live or die wanted to hear.
Although Arthur was too polite to speak sharply to my father, I could tell from the way he drew back his head and pressed his lips together that he was angry. He took off his glasses and held the bridge of his nose between two fingers, as if he had a headache, or perhaps a sharp pain in his eyes. There were white lines along both of his temples where his glasses had prevented the skin from tanning, and something about those white lines made him seem even sadder to me. I wished I could have said something to make up for my father’s thoughtlessness, but I was just a boy, so I sat there, feeling the shame that my father should have felt.
“You didn’t have to say that,” my mother told him in the car on the drive home.
“I just told him what I think.”
“You could have been more understanding.” My mother turned and looked out her window at the distant lights of the farmhouses set far back from the highway. It would be a few days before we knew that the boy had made it through the worst and would be all right. “Mercy,” my mother said. “That’s what people need when they’re in trouble.” My father held his tongue, and the quiet settled in around us, and I felt glad for my mother’s soft voice, her compassion.
I remembered that night and her words when a doctor in Texas said to me, “You poor soul.”
Her name was Suzanne, and right away I thought of the Leonard Cohen song that goes: “Now Suzanne takes your hand / And she leads you to the river.” I’d told her about my corneal erosions, which had continued in Texas, and she was the first doctor to react with empathy, as if she could truly imagine how horrible this past year had been for me.
All the same, she was a doctor, and after I’d told her about having a hyperactive thyroid when I was a teenager and the medicine that I’d taken, she said, “I wouldn’t be surprised if you had an underactive thyroid now. Almost everyone who’s been treated for hyperthyroidism at some point develops hypothyroidism.”
She explained that the medication I’d taken had worked by killing off a portion of my thyroid gland — probably too much of it. It was a safe bet that this was why my eyes were so dry.
I mentioned Sjogren’s syndrome, and she said, “Oh, sure. Could be. But let’s test the thyroid first and see what happens. OK?”
She had a round, pleasant face and a kind smile. She wore gray felt-covered clogs, green surgical scrubs, and a fuzzy sweater the color of apricots, its sleeves pushed up to her elbows. On one forefinger was a purple Bugs Bunny band-aid. It was that band-aid, more than anything else, that let me believe she wasn’t just a doctor but a human being as well, and that we were in this fight together. And I said to her what I’d been wanting to say to someone for a year. “Yes,” I said. I told her, “Yes.”
She turned out to be right: my thyroid gland was underactive. After a few months of oral medication, I was sleeping through the night, no longer awakened by horrible pain in my eyes.
As the years go on, I sometimes feel a gritty sensation, just enough of a scratch to remind me of my past agony. It happens most often in autumn or in spring, as it is now when I write this. But I can’t bemoan the occasional twinge or itch, or the fact that for the rest of my life I’ll use liquid tears and ointment at night. I’ve made room for such minor annoyances, made up my mind to welcome them for what they are: a means of respecting health, of never forgetting suffering.
I still remember how David jerked and twitched those Sundays in church, how he fell to the floor, eyes closed, and slipped away into some world only he could know. At the time, I gave no thought as to what he brought back with him when he awoke, surrounded by those who loved him, but now I suspect it was something hard to describe, as it must have been for my father when he came home after his amputations, as it was for me when a corneal erosion would finally start to abate. I imagine that David felt inept. We, his friends and neighbors, had witnessed what the seizures did to his body, but how could he tell any of us what they did to his spirit?
Each time I saw David in church, I could tell that the seizures and the rumors about their cause were breaking him down. His previously erect posture — spine straight, shoulders back, chin lifted — had crumbled. He slouched and shuffled down the aisle to his pew and sat with his shoulders sagging, his head bowed. He no longer took part in the services, not trusting his body even to hold the weight of his Bible while he read to the congregation or to keep the Communion tray, with its dainty glasses, steady.
Now, after suffering through my own body’s breakdown, I can imagine what he might have told us when he came back from a thrashing seizure, had he been able to find the words: That he resented us just a little because we couldn’t feel how worn out he was with his constant and exhausting effort to be well. That he had come to both cherish and despise the memory of his vigor and strength. But more than that, he surely loved us for what he knew: that we were all frail bodies, frail souls, all of us luminous in the light of health’s grace, all of us happy to let that brightness blind us and keep our eyes from the shadows lurking behind, those specters of our impermanence, the ones that David, having come back from the darkness, could clearly see.