She had complained of a sore neck all week.
“I sleep on it funny on the bus,” my nine year old surmised.
Finally, on Sunday night, I looked at it. Turned her head left and right, up and down, forward and back, rubbed her neck and shoulders. I guess it’s muscular. She had no fever, nothing to suggest another cause. But it didn’t seem like a stiff neck. Her range of motion was unimpeded. Moving her head did not cause any additional discomfort.
“I don’t know,” I told Trish. “If it’s still sore tomorrow, I’ll take her in.”
At four a.m. on Monday, Rebecca awoke howling. Half-asleep, we rushed to her room.
“My neck hurts bad,” she said.
We didn’t know what to do. We gave her aspirin and got out the heating pad. She calmed down and drifted back to sleep. We went back to bed, too—rattled, a little mystified. But I was taking her to the doctor in the morning anyway. We, too, went back to sleep. Two hours later, it happened again: a scream out of the depths of sleep, tears, and groaning that, this time, could not be soothed away. While Trish tended to her, I called the night nurse.
“Take her to the emergency room,” she told me.
We were really rattled now. When Trish tried to get her out of bed, Rebecca collapsed on the floor. She complained that her arms and legs were tingly, that she couldn’t walk. Her legs were like jelly. We had no idea what was wrong. Could a pinched nerve do this?
Trish lifted her onto the bed and dressed her, in the clumsy way you dress an infant. I carried her out to my truck, holding her upright until the last possible second while closing the door. She sprawled like a rag doll in the corner of the seat by the window, whimpering. The fifteen-minute drive to the hospital took hours. The houses were asleep, the roads empty. We were alone in a world gone suddenly dark. The parking lot by the emergency room was nearly empty. I should have pulled up in front but parked in a slot nearby. When I got her out of the truck, I opened the door slowly, using one hand to hold her in until it swung wide. Then she slumped off the seat into my arms. I lifted her to my chest and walked toward the whispering doors, so scared I could hardly breathe. Her left arm clung weakly to my neck.
Mercifully, the waiting room was deserted. I stepped to the admitting window and said, “She can’t walk, and she’s in pain. The pediatrician’s night nurse sent me in.”
An orderly brought a gurney. I laid her onto it. He wheeled her into one of the curtained spaces. I sat by a desk, filling out forms. She was alone when I got back to her, lying on her back on the gurney, mewling softly. A nurse came in with a clipboard. I recited symptoms and sequence for the second of many times that day—shocking screams, limbs weak, can’t walk.
Blood pressure, temperature, pulse. “The doctor will be in soon,” the nurse said. She drew the curtain closed. The squelch of her gummed shoes faded slowly. The hall grew quiet. Whatever sounds there were were muted, strangely distant. Rebecca, still mewling, drifted off in a half-sleep. I sat in a chair, staring at the floor. A white coat appeared, brisk, and efficient.
“I’m Doctor Painter,” he said, extending a small hand. He was young, much younger than me.
Again I recited events, symptoms. While I did so, he lifted her head, turning it, touching her neck and shoulders. He must have done more—lifted her arms and legs, tested the strength of her grip, shone a light in her eyes. I remember none of it. Only the cold air and light, the knot in my stomach, his prissy efficiency, the silence, his doubting tone. He must have stepped out at some point, perhaps briefly, but my sense of time was as distorted as my hearing. It slowed or raced randomly. I struggled to maintain, or maybe to compose, some sense of order, to form something lineal and coherent. But I bobbed at sea, at the mercy of a current beyond my strength.
“What’s wrong with me?” Rebecca asked, plaintively.
I didn’t know except that she was paralyzed, her right side gone, her left weak. Abruptly I recalled the moment she was born, gray with vernix, but crying faintly in the way that newborns do. “We’ve got a floppy one,” a nurse said of her. I never knew what she meant by that.
“We’re not sure,” I said.
Perhaps a nurse came into our airless tent, drew blood on doctor’s orders. Perhaps she put Rebecca in a gown. I can’t remember. Perhaps the doctor came back, one or many times, asking more questions, repeating the first ones. I can’t recall. What I do remember is that at last he returned and delivered his diagnosis.
When the cause is not obvious, it must be exotic and extreme.
“I’m not seeing anything else,” Dr. Painter continued. “I have two children of my own. I know how wound up they can get.” Something must be going on, he assured me, at home or at school.
“No,” I said. “Nothing. And this child does not worry about school.”
Trish arrived, having gotten our younger daughter off to daycare, called the school and both of our offices, saying we’d be late.
“Hysterical paralysis,” I told her.
“What? I can’t believe it.”
“Neither can I.”
Just in case, she found a phone and called the school.
“I talked to Mrs. Snow,” she said when she came back. “I asked her about school. ‘That child? No, nothing.’”
“That’s what I thought,” I said.
Time stopped again. Rebecca moaned softly, lying on the gurney, staring blankly at the ceiling, glasses smudged. Dr. Painter came back, officious and groomed. We told him what we’d learned.
“Well,” he said, with some impatience. “I’ll order an X-ray. But it’s not going to show anything.”
He left. We sat in mournful silence. Time passed. Someone came to wheel her to X-ray. More time passed. At least I think it did. It’s hard to say what happens in a void.
“I guess I’ll go to work,” Trish said. “I told them I’d be in.”
I sat in the chair, holding my head in my hands. The world receded.
Dr. Painter returned, looking small beside the tall man that accompanied him. Dr. Greenberg, I think. A radiologist. I stood up. Dr. Painter took a breath.
“It turns out that my . . . more optimistic diagnosis . . . was wrong, and your . . . more pessimistic . . . sense was right. She has a lesion on her vertebra. We have to do more tests. We’re preparing her for a CT. We’ll have more information then.”
Dr. Greenberg said nothing. I stood there. I didn’t know what a CT was. I wasn’t even sure what a lesion was, nor its significance. But I didn’t ask.
They left. A nurse came in to move me out of the tent.
“They’re running more tests,” she said.
I stepped out and stood by the nurses’ station.
“There’s a waiting room upstairs,” someone said.
“I need a phone.”
When I called her, Trish said, “Lesion? What’s that?”
“I have no idea. They’ll know more after the CT.”
She didn’t ask me what a CT was. I looked at my watch. It was 10 a.m. I had been there for four hours, equal to a thousand years.
They say that at the bottom of a well, you can see the stars in daytime. But I was plunged into a pit, with neither sound nor light. Someone must have led me to the elevator, up to a wide and empty waiting room, carpeted, with armchairs and a bank of tall windows, through which the sunlight streamed. Or maybe I groped my way up there myself. I’m not sure.
Time passed, I think. A balding, pot-bellied man appeared, wearing brown polyester trousers and black unpolished shoes.
“Mr. Rohdenburg?” he asked.
I nodded. He introduced himself. I can’t remember his name.
“I’m a chaplain here,” he said. I shook his hand.
“They’re doing an MRI now.”
Something else I’d never heard of. He chatted quietly. I must have answered. After a while, he was called away.
When he came back, he said “They’re ready for you now.” He led me to the elevator.
As the elevator doors closed, he said, “They’re calling it an AVM.”
“I don’t know.”
He led me down a hall. Dr. Greenberg was alone this time.
“Your daughter has an arteriovenous malformation,” he began. “We’re sending you to see a pediatric neurosurgeon.” Until that moment, I didn’t know such a specialty existed.
“I worked with Roger for six years. He’s the best,” he assured me.
“I don’t even know if he’s on our health plan,” I said.
Dr. Greenberg stared at me. “They’re not going to give you any trouble about this.”
Rebecca and I rode in an ambulance to the children’s hospital. I sat in silence by the driver.
“You can’t ride in back,” he said. “Safety rules.” Another tech sat in the back with her. Traffic was light, rare for Atlanta. I looked at my watch again. It was 2 p.m.
When we arrived at the hospital, she was taken up to a room while I was sent to the business office. Insurance card, driver’s license. Fill out these forms. You’re responsible for whatever insurance doesn’t pay. It was a blur to me. I couldn’t grasp what was happening. Finally, I was sent up to her room, on the fourth floor, the neurological wing. The chart on her door read, “Tumor or AVM.” I don’t remember that detail. Trish does.
Rebecca was alone, in pain, lying on her back. Only her left arm moved, clumsily, to scratch her nose. A nurse stepped in.
“The doctor will be here soon,” she said.
“Can you give her something for the pain?”
“Not until the doctor sees her.”
It was nearly four o’clock. Time here was not bound by the clock, but by the phases of the moon. The room was cold. The walls were cinder block painted beige. There was one narrow window opposite the bed. I sat by it, looking out. In college, one of my professors told me she had had a sister who was murdered. “It was a long time ago,” she said. “Riding to the police station that day, the sky was so blue.”
This was the same. It was the last of October. The late afternoon sun filled the window with gold light. The trees below were all aflame. What in hell is happening? It occurred to me I hadn’t eaten. But I wasn’t hungry. I wouldn’t eat for three days. I wasn’t hungry once.
Trish arrived. I don’t remember calling her. A friend was taking Abby, our younger daughter, for the night. Trish and I sat by the bed. Monday was surgery day, it turned out. The doctor didn’t arrive until after seven, a small taut man with glasses and close-cropped hair. We sat with him at the nurse’s station, out of Rebecca’s hearing.
“Your daughter has had a stroke,” he said, in his blunt but quiet way, “caused by an arteriovenous malformation in the spinal cord. I’ve been looking at the films. It’s very bad. I’ve only seen one other case like this, and that was much lower in the cord. Hers is worse.”
“The paralysis . . . ?” I asked.
“It’s likely permanent,” he said.
I choked up. The doctor seemed surprised. I suppose he expected everyone to know the damage was permanent.
“First we have to get the swelling down. Then we’ll do more tests.” He gave her something for the pain. After he left, we went back to the room, groping for understanding. The AVM was high up in her spine, just below the shoulders. The pain was caused by bleeding, which had caused the cord to swell, which in turn caused the paralysis. The hemorrhage deprived the cord of oxygen, resulting in nerve damage, nerve death. There was no cure for that.
We had to make a plan. Rebecca was helpless. She couldn’t feed herself. She could barely raise her head. She had to be lifted onto a bedpan. She had to be dressed. She had to be attended to. The nurses didn’t do this. They weren’t staffed for it, and anyway had a floor full of damaged children. We had to be there. But then, where else would we be?
Night fell. Medicated, Rebecca fell asleep. I was exhausted.
“I can’t stay tonight,” I told Trish. “I just can’t.”
“That’s okay,” she said. “I’ll do it. Bring me some clothes tomorrow. Get some rest.”
My truck was still sitting in the hospital parking lot where I had begun the day. I had to drive the van home. I walked numbly to the parking deck. Halfway there, I realized I had no idea where Trish had parked it. I went back to the room. She was sitting by the bed, reading a romance in a small pool of light. She looked so calm; I couldn’t imagine how she managed it. Third deck, half-way down, on the right. I went back downstairs. The halls of the hospital were like tunnels. I walked out into the gloaming, cool, and glistening with the early stars. I found the van, got in, pushed the seat back, turned the key, and backed out slowly. I started sobbing, huge, wracking, choking sobs. I cried like that the whole way home.
The pain in Rebecca’s neck was constant. They pumped her full of steroids to bring the swelling down. Trish and I alternated nights at the hospital. We had a frightened and bewildered five-year-old at home. We tried to keep things as normal as possible there, but nothing was normal: the world was unalterably warped, the earth tilted crazily on its axis. We clung to it precariously. Cook dinner. Feed the cat. Give Abby her bath. Read her a story. Tuck her in bed. Stare blankly at the television until, at last, you start to nod, then stumble up to bed.
The CT and MRI told only part of the story. The doctor needed an angiogram. For that Rebecca would have to be transported across town, to another hospital, where a neuro-interventional radiologist waited. The world was full of specialists I’d never heard of. I stayed with her the night before the test. We got up early, 6 a.m. The sky was dark. A pair of EMT’s arrived with a gurney. As they lifted her gently from the bed, Rebecca began to cry.
“What’s wrong, sweetie?” the older one asked.
“I’m scared,” she said.
“Honey, there’s not a thing in this world to be afraid of.” But there was nothing in this world but fear.
This trip they let me ride in the back. We wound through city streets just waking up, the sky turning slowly from black to gray. It was raining. We were admitted to another children’s hospital, which had the advantage of adjoining a larger, university hospital. We were led into another curtained space. The nurses around us worked briskly. I sat dumbly in a chair. The earth revolved sluggishly, slowing time, once again, to a crawl. Finally, Rebecca was transferred to yet another gurney and wheeled to the elevator. We sank two floors, three, into the sub-basement, into the earth’s core. Here, the orderly hooked the gurney to an electric cart. I sat by him. We began a long, slow drive through blank white hallways, where the cold light cast pale shadows against the wall. Rebecca had been injected with a sedative. She lay still. I couldn’t tell if she was awake. The IV bag hooked to the gurney rocked back and forth. Kitchen staff were starting their day, an ordinary day, a day of no particular consequence, a day like any other. I had not expected Hell to be like this, a clatter of dishes, the cold air. We stopped in front of a bank of elevators. He unhooked the gurney at one of them and wheeled her in. We rose again, back to the surface, which hardly differed from the depths.
He led us into another curtained space, where more nurses attended her crisply. One handed me a form clamped to a clipboard. It listed countless harrowing consequences of the next procedure. I signed it. What could be worse than what we had? The nurses disappeared. Again time slowed to its hospital crawl. At last, they came to take her into the operating room. I was ushered back into the depths, whizzed through the chalky, cold spaces, then rose again. Trish sat in the waiting room, reading her book. I slumped beside her, and we began the long, sickening wait for the results. Outside the window, the streets were wet from a brief early shower. Wind-blown leaves trailed from stark black trees.
The waiting room sat just outside the ICU. All around us were strained, grim faces, small huddled groups murmuring quietly, tears dabbed at by balled, wet tissues. Overhearing scraps of conversation, I was struck, then, and every time we landed in that room over the long months of our struggle, that however extreme our situation—and every moment, it seemed as much as I could bear—there were others around me even worse off, parents of dying children, parents counting the hours, children who would never go home.
The grief and tension in that room were palpable, and we sank in it like slipping underwater, slogging on the bottom, looking up at the distant, milky light. I paced and brooded. Trish slipped out to smoke a cigarette, but otherwise, when she was not railing at the pace of the day, the interminable wait and the lack of information, read her book. It was a striking contrast, a rare exception to the rule that she was, almost unfailingly, the patient one, while I raved and swore. But in the hospital, every time, our roles reversed. I accepted the empty, arid waits mutely, while she raged.
Morning bled slowly to afternoon. Finally, the doctor appeared, accompanied by a bigger, softer-looking man. The radiologist. He introduced us, then paused. I stopped breathing.
“It’s a large mass,” the doctor began. “Three of the vertebral bodies are involved. A case like this is very rare. There is no procedure. AVM’s in the brain are comparatively common. There’s data, percentages of likely success. But not for one like this. We’re sending the films to a few colleagues—in Baltimore, San Francisco, an associate in Charleston, South Carolina, Paris. We’ll wait for their input. But I have to tell you that the most likely outcome is quadriplegia.”
I’m sure he kept talking. But I stood stone-like, my mind stilled utterly, mute and numb. Then the world flooded back; the doctor was still talking.
“ . . . she’s in Recovery. It won’t be long. They’ll bring her out, soon. Then she’ll go back to Children’s.”
For the next three weeks, we alternated nights in the hospital. Rebecca was nearly helpless. Once, I carried her to the window to look out at the perfect blue sky, the flaming maples. The fearsome pain in her neck slowly subsided as the swelling in the cord receded. Her face grew moonlike from steroids. It’s odd how such details linger in the memory. This is where I first observed that what we recall of shared events differs so greatly one from another. Trish has a whole different set of memories, which match mine only randomly. Rebecca, who seldom talks of those days, and was a child anyway, must have still others, though she says she doesn’t even remember. So stark and clear those days are to me, it is beyond my understanding how she could remember nothing. But she was only nine.
I tried to be cheerful, optimistic, reassuring while in the room with her, but literally shook with anxiety and fear whenever I stepped into the hall. Trish and I were rarely there together. We had another child at home. We had jobs. Vacation time disappeared like smoke. Our employers did what they could—getting us laptops, rare and expensive at that time— and assigning us low priority, even mindless work, that we could do while at the hospital. At home, people from work showed up with food, groceries, even cash. I was amazed by their generosity. Neighbors offered to take Abby to the amusement park, to spend the night. The well of their kindness seemed to me to overflow. Yet one neighbor, perhaps a week into our ordeal, stood on the porch one afternoon, with tears in her voice said, “Why won’t you let us help you?” I was astonished. It seemed to me that we had already received a wondrous bounty. It did not even occur to us to ask for more. The burden, after all, was ours and no one else’s.
Within a few days, my parents came down from Cincinnati. They were, as always, an uncomfortable presence, but absolutely well-intentioned, and did ease some of the load, especially with Abby, and, on weekend days, relieved us of our hospital duties, so we could tend to the necessities of home. It is not as though we unwound in any way—we were always stretched tight as drumheads, fearful, shocked, almost stumbling with anxiety. But there were other responsibilities.
Slowly, a testament to the power and resilience of young cells, Rebecca got better; far from whole, but wobbly and shakily better. First, the pain eased. Then she could sit up, and we could lift her into a wheelchair and take her downstairs, where a large aquarium of bright saltwater fish delighted her. A cage by the gift shop held brightly colored finches. We even rolled her outside, in the cool November weather, to the sparkling fountain in a tiny green garden. Physical therapy began, the lifting and bending of her weak and clumsy legs, exercises for the fingers, then the hands, the arms, even her delicate neck.
In the meantime, we spent hours with counselors and social workers, preparing ourselves for what we were told was the almost inevitable outcome. For me, its ramifications were nearly unbearable, yet seemed almost gratuitous, since nothing was certain, and I saw no benefit from anything more than the minimum preparation for the possibility. But Trish pursued the details relentlessly, wanting to know everything: what we would need, what Rebecca would need, how things were done—the grooming, the dressing, the bathing, the cleaning up after daily bodily functions. She could control her anxiety, it seemed, only by being absolutely and fully prepared. I wanted to address these matters when the time came, if it came. I don’t think I was running away from them; but for me going over such details served only to increase my fears and hopelessness. Why do that to myself? These things did not need to be addressed now. They were concerns for later; they could be deferred. It was all I could do to hold myself together in the present.
Friends and neighbors, even casual acquaintances, offered their prayers. I accepted their sincerity gratefully, even though I knew they would have no bearing on the outcome. I found it striking that at this, the most awful moment of my life, I sought no consolation in prayer. What would God have to do with anything? They say there are no atheists in foxholes, but I don’t believe it. The conclusion that there is no God is to accept the random cruelty of the universe. I know many are consoled by the belief that there is an overarching presence offering beneficence, consolation, grace. I say that flies in the face of reason, that everywhere around you is evidence of God’s absence, or indifference, if those are different things. Trish is a lapsed Catholic. I thought she might draw some consolation from the presence of a priest and asked a counselor if one could be provided. But his ministrations to Rebecca only confused and frightened her, and his presence did nothing for Trish.
“Why did you do that?” she asked.
“I thought it would help you,” I replied.
We felt no anger toward anything. We begrudged nothing. This is what we had, a small genetic disaster in the early weeks of fetal development, with monstrous consequences. Everywhere, a few deer wander in front of the headlights. But Rebecca had not chosen to cross the road. Anguish was visited upon her by simple, random biology. Bring me your prayers, your hosannas, I accept them gratefully. They are ripe with sincerity and good intent. But they are wind-blown words whisked into the emptiness. The evidence is everywhere. The world is cruel and the suffering unending.
After three weeks in the hospital, we took her home. Anything that could be done carried with it so much risk that it was wiser to do nothing and hope for the best. The doctors had no solution, no treatment, no plan.
“We got feedback from our colleagues,” the surgeon said. “Nothing very helpful. The condition is simply too rare for there to be an established approach. Anything I might do is too dangerous. We’ll wait and see how she does.”
By this point, it was clear that the right side of her body suffered significantly more than the left. But it wasn’t as bad as it might have been. She walked with a slight limp, her right arm curled slightly in front of her, but she was functional. We were grateful for that. She had gone nine years without the slightest hint of trouble. Maybe she would slide by this. The doctor gave us no such assurance. He said again, and he and others would say it time and time again, the most likely outcome is quadriplegia, the most likely outcome is quadriplegia, the most likely outcome is quadriplegia. It echoes in my mind to this day. The ravaging of innocents is the refutation of God.