Other Monsters
NOTE: This essay was published in Map Literary in the spring of 2012.
When filling a pothole, it’s important to pay close attention to the lip – that line where the new clean, black asphalt meets the existing road. This is especially true when the pothole sits at the bottom of the hill that neurosurgeons such as Fred Epstein enjoy cycling down at modest to great speeds.
The hill that Dr. Epstein glided his bicycle down was on Lake Avenue in Greenwich, Connecticut, roughly 512 miles from my in-laws’ house on Lake Road on Cleveland’s west side. That’s where my wife and I left our sixteen-month-old daughter in the care of her aunt and grandmother as we made our way towards New York City in the fall of 2001, nineteen days after the planes. We weren’t going to Manhattan to help others or to be part of the most calamitous time of our generation. In fact, we weren’t really thinking of other people much at all. We were going there because that’s where Dr. Epstein worked, and he was the only man in the whole wide world who’d promised that he could remove what remained of the tumor that had grown and grown inside my spinal cord, just below my brain stem for each of my thirty years.
It was early in the morning on September 30, 2001, when Dr. Epstein’s front wheel met the pothole. I don’t know what he was thinking or if he was thinking at all while he flew through the air before crashing to the ground, shattering his helmet first and then his skull. I'm almost certain he wasn’t thinking about me. I hope, for his family’s sake, that he was thinking of them.
Still, I wonder. Dr. Epstein had been remarkably generous and patient with my wife and me, and he seemed to know me and my fears deeply, and so I wonder if he recognized that the moment he hit the ground, his absence from my life would be as terrifying as the need to have him there in the first place. I wonder if that occurred to him in the heartbeat before his mind began its long slumber, a twenty-seven-day-long coma, and then a short life as the kind of damaged brain he would have tried to have healed.
In the retelling, I tend to tie the days in knots, so it’s worth laying out the timeline from the outset. I was diagnosed with my spinal cord tumor in June 2001 when Kirsten, our daughter Madeline, and I were living in New Hampshire while I taught English at a boarding school. Two weeks later, I had my first surgery, which removed half the tumor. Compromised and dispirited, we returned to the farmhouse turned dormitory where we’d lived all year. Within three weeks, the empty dorm and the deserted campus were too much like mirrors, so we moved to Cleveland where Kirsten had grown up. We spent the next three months living with her mother and stepfather. That’s when Kirsten discovered Dr. Epstein’s name. We scheduled the second surgery for October 3rd. We called his hospital ground zero months before it would be impossible to call anything that ever again.
On the same September day that Dr. Epstein flew over his handlebars and hours before our drive to New York from Cleveland, I went for an angry, defiant, melodramatic run. I ran first by the cliffs above Lake Erie and then past The Convenient, an unremarkable replica of a thousand other small grocery shops with that name throughout the Midwest. This one was mine, though. I knew its smell – coffee and cigarettes and Freon from the air conditioning -- just as I knew each step of the sidewalk on the short route to it from my in-laws’ house, which concrete slabs dipped and which ones rose from the tree roots. I’d walked there for coffee every morning in the months that we’d lived with my in-laws, Marilyn and Paul. It was part of the plan I’d rigged up once I woke up from my first surgery and couldn’t feel my feet.
As I passed its empty parking lot, I nodded towards it as if it knew the role it played in my story, as if its mere presence were telling me to press on, reminding me that three months earlier, I’d barely made it to the front door.
If this sounds overblown, that’s because it was. In the months after my diagnosis, I shed my embarrassment about drama. Before the tumor, I tried to live without making more of something than it was. Even the stories I wrote walked cautiously around the dramatic moment – though, to be honest, there I often indulged and then forgave myself afterwards. Stories need dramatic tension after all. In life, though, I tried to limit the theatrics or, what’s truer, to resist the impulse to see the clashes of forces at the heart of drama or at the root of a teenager’s decision to dye her hair black or a thirty-year-old man’s need to write stories about car wrecks and missing children.
But now with a second surgery in front of me, I didn’t have the energy to worry if I was overplaying it. The first surgery had been incredibly hard and so to willfully walk back into another hospital, to surrender to the drugging first, and then the careful slicing of the back of my neck, and then the pulling of the black plug of tumor, a set of minute acts each of which, if done too quickly or if pushed too far, could take my feet away or my arms or my dignity – to do all that required that I shed most of myself.
Past The Convenient, I ran hard for a mile and pressed into each step with the autumn sun rising and the sky azure blue. I tried to memorize the sensation of motion, the snap of one foot following the other as I sprinted, that sound of me in motion. I ran and ran and ran and told myself that I would run again. Back to the house, I showered and said goodbye to our daughter, my mother-in-law and Kirsten’s sister, Megan. I did all that without dissolving. I told them I’d see them in a week and that I’d do it while standing up.
We were on the road by noon, the same noon that Dr. Epstein would not track because his mind had already become a murky, silent nothing.
In the six months before the diagnosis, my feet had held a numbness like the tingle and dullness before a limb falls asleep. I ignored the change in my toes and heel, though, or more truthfully, I wedged it into the narrative of my life as if it had been there all along. I told myself that it was nothing new even if I knew that it was and that it was not the only signal in my body informing me of a plot shift. For years, my back had been seizing nightly. It wasn’t until I started falling down, though, that I began to panic and finally confessed to Kirsten that something was very wrong.
There were days – I can look at them in the hard-spined, black calendar that I kept at the time – there were days before the MRI that first saw the tumor – days that I filled with the end of the school year and with liquefying anxiety. Here – on Friday, May 11, I bought Kirsten her first Mother’s Day gift. I don't remember what that was. And on Wednesday, May 16, I got a haircut and prepared for a class on The Catcher in the Rye. These are the days that have almost disappeared from me.
But then they re-emerge. I am in the class I hate the most. I have given up on these freshmen. They may very well turn into good, thoughtful people, but today, today they are awful and useless. “You are at your nadir, people,” I tell them. Nadir is one of our vocabulary words. I am no mood for them. I am consumed by my fear of what is inside me, and so I make them free write. They do it. They are sheep. I take out my own sheet of paper. I write down the date: May 28, 2001. And then I write down my fears.
I am as close to willful paralysis as I've ever been. I am in the last weeks of the New Hampshire experiment and instead of relief I feel dread. I interpret my external world through my blurred lens – the fact that Matt Ciocchi has a hazy halo hovering aurora-like around his puffy head seems to contribute an undeniable contributing sign that all is not right in Terry-land. All signs point to it. My vision is fine, but my leg is tight. Is this tightness due to a long run last week or a malignancy within the muscle? I don't feel dizzy, have no headaches, can breathe deeply, see well (I just tested it) and yet I cannot escape the impression, the conviction that my uneasiness derives from intuitive knowledge, a cellular comprehension detection of an invader. That everyone tells me I’ll be alright serves as no consolation. I am doomed I know. And yet I don't feel philosophical or theological. I am shallow. A shallow grave? A shallow obstacle? What? Dear God, Dear me, what is this? Have I created or detected? What will the magic MRI reveal? Tell me now.
And so despite assurances from various doctors and everyone I knew, I wasn’t surprised when the magnets produced pictures like the murky images of the sunken Titanic or a deep lake monster caught grainily from shore, pictures that revealed a long and skinny and misshapen growth in the pipe that runs from my brain to my pelvis. Not surprised, but disoriented and shattered. Kirsten and I were alone and far from home, states away from anyone who could fathom, in the ways that families can, what it meant that we were threatened like this. She was the one who called my parents and hers, but I wanted to be the one to call my identical twin brother Scott. He needed to hear it from me.
He and Janet lived two hours away, just outside of Boston, which was one reason I’d taken the job in New Hampshire. Though it was late, ten or eleven, he didn’t pick up the phone the first time I called. I waited a minute and called back. He picked up, groggy.
“I’m not okay, Scotty,” I said and then filled him in.
He and Janet drove the next two hours in silence, he tells me, him hunched over the wheel, the headlights opening up ten yards of highway at a time.
My first neurosurgeon was named Dr. Roberts, and he was a lovely man, tall, with wisps of disobedient and thinning gray hair. He consoled as much as he consulted. He told me the tumor had to be removed, “Tumors grow,” he explained. It seemed an obvious point, but under the bright piss of fluorescent lights and surrounded by the room’s measuring instruments and posters of the body de-skinned and exposed, the obviousness was lost on me. “We have to get this out of you before it does more damage,” he said. “Once it takes something like your feet or your arms, you won’t be able to get it back.”
In the end, though, he could take out only the bottom half of the tumor. He had sliced through my neck, removed the backs of the vertebrae from my second cervical to my second thoracic, and then moved through the three layers of tissue before arriving at the worm.
In all, it took eight hours to remove the bottom portion of the tumor. When I woke, Kirsten says I looked deformed with eyes garishly swollen from the hours I’d spent head down so the surgeons could do their work. We did get good news though. Even before the official biopsy, Dr. Roberts could tell that I had an ependymoma, a slow-growing benign tumor discovered mostly in very young children. It’s a good kind of monster, but it also tends to grow in inaccessible places, or at least places that most surgeons try to avoid. Mine was intramedullary, which meant it was growing inside my spinal cord, tucked into one of the horns. It could have been an astrocytoma, which was, at the time, devouring the brain of my best friend’s fiancé and would later emerge, without any sense of irony, in the brain of Scott’s wife’s twin sister. It could have been other monsters too, but it wasn’t. When I woke in intensive care, Kirsten and Scott were there and they told me what it was, and I began to chant “ependymoma,” “ependymoma,” as if a man of that name had just hit a game-winning homerun.
The ecstasy wore off soon enough. Dr. Roberts left me with a thick numbness below my waist and feet that felt like hooves and the prospect of a second surgery, a surgery he told us he shouldn’t perform. Even after twenty years as a brain surgeon, he simply had not seen enough of my kind, and he’d stopped eight hours in because the higher he’d gone in my spinal cord, the more likely he would have left me a quadriplegic. He told us this with a sad, straight-line smile.
When I came back to the dormitory after my first surgery, Scott and Janet rented me a hospital bed because I couldn’t walk up the steps to my bedroom. It sat in the center of the living room like an altar, magnetic and out of place. I came into the house on crutches. My legs buzzed electrically, and I felt little of what was beneath them. My feet were thick and uncoordinated. And the narcotics and steroids and the list of meds that Kirsten wrote down religiously in the same black book that had recorded my grocery lists and planned my weekends – all those invaders hazed my mind. When I got in the bed, I began to cry uncontrollably. My life had become a hospital bed in the middle of a living room in New Hampshire, and my body had become malignant – numb below my waist with an electrical storm in my legs and half the tumor still sleeping below my brain stem. That night, I wept and told Kirsten that I imagined myself in a dark basement with a locked door and no windows out. Where were my windows? There were no windows.
Returning to the New Hampshire dorm on June 23, 2001 with Kirsten behind and Scott in front.
But then we moved to Cleveland and found Dr. Epstein. The newspaper articles described him as tenacious and kind – the kind of neurosurgeon who left his number in the phone book, who answered his own phone, who invited his patients and their families to call him Fred and to call him any time, who wouldn’t walk into an operating room when removing a brain and spinal cord tumor from a child until she was anesthetized because, otherwise, he would begin to weep. Where other neurosurgeons, even heavily experienced ones, had done twenty or thirty spinal cord tumor resections, Epstein had performed nearly a thousand. He was one of the most famous neurosurgeons in the world, known for going after tumors that other surgeons had called inoperable. And, more than anything, he was humane. He once performed spinal cord surgery on a wealthy man’s dog in exchange for a donation to help a child whose family couldn't afford the neurosurgery he needed.
Over the months we lived with Marilyn and Paul, Dr. Epstein had comforted Kirsten with his assurances and his experience. Only one doctor we’d met cautioned us. He was an assholic neurosurgeon who’d warned us that Dr. Epstein was a cowboy. “I've had plenty of his patients roll in here as quadriplegics,” he told us.
As soon as we got home from that appointment, Kirsten called Dr. Epstein and made me speak to him because I was sobbing and shaken. I took the phone reluctantly.
“So you're the nervous guy?” he asked.
“I guess so. I shouldn’t be nervous?”
“You can be, but you don’t have to worry. I’ll take care of this for you. It’s not free though. Your wife has told you that, right?”
“It’s fine. I don’t care about pain. I just want to walk.”
“Oh, you'll walk. You’ll drive. You’ll have another kid. You’ll just hurt.”
“That’s okay.”
“Good.”
“This other doctor just said you're a cowboy.”
“He did, did he?”
“You feel good about my surgery?”
“I do. You want me to make you feel better? Listen. NBC is doing another feature on me, and they want to film one of these surgeries on an adult. You want to be on TV? I can’t screw up on television.”
It seemed like a brilliant plan, and it calmed me when I hung up minutes later and for some time after that. But it was also a plan that burned in the jet fuel of the planes that pierced the towers. With the ash still in the air, I had the sense to know that TV producers would not be doing my kind of human interest stories anymore.
On the way from Cleveland to New York, Kirsten and I sat in the backseat of my father-in-law’s blood red convertible Cadillac and didn’t say much because there wasn’t much to be said. At one point, I put my head on her lap and looked up at the wind whipping and blowing her hair in a swirl and into her mouth. There were planes above us, which still felt strange after those first days of empty skies. High in the endless blue, they looked gray and uniform like sharks.
As planned, we made it only as far as Syracuse. Paul had reserved two rooms: a master suite for himself on his company’s dime, outfitted with a Jacuzzi and a king-sized bed, and a small room for us. In the elevator, he handed us the key to the suite. “You two enjoy yourselves,” he told us.
My sickness had ravaged many people. There was me, there was Kirsten, and there was Scott whom I spoke with once, twice, five times a day, and who daily recorded his fears and hopes in his cell phone’s voice recorder as he walked from the T station to work. There were my parents and my sisters and Kirsten’s mother, but there was also Paul, my step-father-in-law for seven years. Though we shared no blood or marital obligations, we were oddly close. I’d known he was generous, prone to welling eyes and sentimental toasts at dinner, but this illness had surfaced a depth of love and compassion in him towards me and me towards him, and so it made sense that he was the one who was driving me to my surgery and that he was the one who knew I would benefit from a night in a hotel with my wife and a hot tub.
Up in the hotel room, I fell onto the bed and calculated. In eighteen hours, I’d be in the city having lunch with my friend Kevin. In twenty hours, we’d check into the room we’d rented next to the hospital. In thirty-six hours, I’d have my preoperative MRI and then a few hours later finally meet Dr. Epstein who would convince me again that he would save me. And in sixty, I’d open the glass doors and I’d be back in that anesthetized, antiseptic space filled with metal handrails and plastic curtains and unintelligible chatter, the secret language that kept the secrets of the nurses, doctors, and surgeons. And then I would yield to them.
Kirsten sat down next to me and placed her hand on my back. “You're gonna be okay,” she told me. It was an empty thing to say, but it was all we had now. There was nothing left but the doing, and she was there and I was there and we were us, two kids who’d met in college, who’d played house and grown up and feigned our way through the first stage of parenthood, and here we were on the ridge of the highest canyon outcropping we’d ever climbed out onto and so words didn’t mean much. I rolled over and she leaned down and placed her lips on mine and I closed my eyes.
The MRI is a percussive instrument. It clanks and chugs, goes quiet for a moment only to riot again. It’s also a rehearsal for a burial, narrow and almost airless. At the time of my New York surgery, I’d had only two MRIs: the first one saw the tumor and the second, hours after the surgery, captured what was left. That second one had been particularly awful. I’d finally fallen asleep in my hospital bed with my legs firing electrical shocks and my neck aching along the seven inch incision. Then two orderlies in white coats pushed a gurney into my room and told Kirsten, who’d also finally fallen asleep in the chair beside my bed, that it was time for my post operative scan. She protested, talked to the nurse while I tried not to weep. My body –alien and unfamiliar and immovable – had finally quieted and now they’d inexplicably awakened it because a schedule somewhere had informed them that it was my time to slip into the machine again.
That is one of the significant aspects of illness, the disappearance of I, how your volition becomes exposed as a hoax, how the body or the schedules of others begin to orchestrate life and how your consciousness becomes a passenger. And so for this scan, they wheeled me to an elevator and then up to radiology with Kirsten holding my fist and my breathing anxious and rapid, and my legs a lightning storm. When they slipped me into the machine, I began kicking because I could not feel my legs or my feet and so I needed to see them; otherwise, they were gone to me, amputated neurologically. I pressed the alarm button and, crying, told the technician and Kirsten that I couldn’t do it.
“You have to give him something,” Kirsten pleaded. “He just had surgery for eight hours this morning. He can’t feel his feet. You can't do this to him.”
“Okay, okay,” the technician said. I could hear that she was a woman, but I wasn’t paying attention to the details. I had Kirsten to do that, to be me outside of me, and that made all the difference. It is one reason we marry.
My third MRI was a day after the trip from Cleveland to New York on the morning of October 2, twenty-four hours before the scheduled second surgery. Because it had to capture and measure two parts of my spinal cord, it took nearly two hours, and so I’d discovered the value of Vicodin, which cottoned my mind and compressed time. Inside the chamber, I felt calm enough. The troops had gathered. Kirsten was out in the lobby with Scott and Janet, Paul, my mother, and father. I was hours from meeting Dr. Epstein. I was in the moment that I’d dreaded for months, but all the pieces were in place. I was now starring in a drama that others were directing, and so despite the sounds of warfare around me, that’s what I fell asleep thinking – we were here finally, and I was ready to capitulate. I was so out of it that I didn’t even wake much when they pulled me out to inject the dye that made the tumor glow.
When it was done, Kirsten was in the room. She asked me if I was alright.
“I think so.” I felt dopey and hazy. She helped me up and I stayed put with my feet dangling over the side of the platform.
“Scott was thinking we could get lunch and then come back for our meeting with Epstein,” she said.
“Sure, sure. Fine. Whatever.”
“You're totally stoned aren't you?”
“A little bit.”
She helped me up, and we walked out to the waiting room where the others were. My mother, red-eyed and red-nosed, walked towards me and hugged me. Scott nodded at me conspiratorially. We were in it now, and he was trying to focus me.
Kirsten approached the receptionist and told her our plan. It seemed a courteous, innocuous moment, but then the woman’s face grew solemn.
“Before you go, you need to see Dr. Jallo.”
In my Vicodin haze, I became an observer, a camera floating between the faces.
“Who’s Dr. Jallo?” Kirsten asked. “We have an appointment with Dr. Epstein at two.”
“You need to see Dr. Jallo.”
“Why?” Kirsten asked. She could tell, too, that something had shifted. “Who’s Dr. Jallo? What about Dr. Epstein?”
Scott and my father moved toward the receptionist’s desk.
“He’s not here today,” she said.
“We have our surgery tomorrow,” Kirsten volleyed anxiously. “He’ll be here tomorrow, right?”
“You need to see Dr. Jallo,” she repeated, this time with some curtness that seemed not rude but pressing.
Just then, a door I hadn’t seen opened, and in walked a Mediterranean man, olive-skinned, cheeks peppered with the day’s whiskers, horn-rimmed glasses. He introduced himself as Dr. Jallo, which felt, to me, cheaply cinematic in its timing.
“What’s going on?” my father asked.
And then the doctor told us about the pothole, the helmet, the coma, and I saw for the first time, the ash-gray color of sorrow and fear on my father’s face. Anesthetized and numb, I was somehow removed from what had just been revealed, and so I floated above it and watched as the news of my stolen hope ravaged the people I loved and who loved me, and I felt strangely comforted and curious about what would happen to me now that the one man who could save me needed saving himself.
According to reports, Dr. Epstein was rushed to Stamford Hospital in Connecticut where he had emergency surgery to relieve the pressure on his brain from a blood clot. The coagulating mass was displacing vital brain structures, and so his doctors opened his skull, and his body shut down his systems, and the whole of his life fell quiet, empty as a theatre or a funeral home after dark.
When he heard about the accident, Dr. Jallo had gone to Stamford and had sat by Epstein’s bedside. He told us so after leading us down a hallway and into an office that I’d seen pictured in a magazine. On the door was a sign written in a child’s hand, a sign that read only “Fred.”
I sat on the couch with Kirsten on one side and my mother and father on the other. Scott and Janet were in chairs, I think, and Dr. Jallo was across from us. On all the walls hung framed photos of Dr. Epstein with his patients as well as their crayon-drawn pictures. We were in his private space where we were supposed to finally meet him and he was nowhere.
“I can imagine your shock,” Dr. Jallo began. “We’re all feeling it. If you want to delay the surgery, we can, but I want you to know that I can get your tumor.”
“What about the doctor at UCLA?” my dad asked.
“There are other surgeons who could do it too,” Dr. Jallo agreed, “but no one has done more of these than I have. I've assisted on almost all of Dr. Epstein’s spinal tumor resections and done probably a hundred of them myself.”
Kirsten looked up. “So now that Dr. Epstein’s out, you're the most experienced spinal cord tumor neurosurgeon in the world.”
He looked at her glassy-eyed. “I guess so,” he said.
In my haze, I understood what was happening, but I didn’t entirely grasp its gravity, or its gravity didn’t entirely grasp me. Either way, I didn’t feel like I was the one who should make the call but eventually all the heavy eyes fell on me. I didn’t know what to do. There were bodies stacked everywhere in New York, thousands of them, and all the grief that attached itself to death and loss, and now another man had fallen. I had to decide whether I was ready to wager my body or whether I should retreat with my fears and seek another savior. That’s what it felt like, and I was too tired and drunk and I had too much hope entwined in the mythology of one man’s abilities, and so without much hesitation, I said, “I want this thing out of me.” I looked at the doctor. “You can do it?”
“I can do it.”
“Well, then let’s do it.” I scanned the room. “Okay?”
Everyone nodded.
“Okay,” I repeated and then leaned my head on Kirsten’s shoulder.
There was something unseemly and invasive about walking through Manhattan as a visitor in the days after the planes. The grief and shock were naked, advertised on the handmade “Have you seen my ________?” signs tacked on every wall and telephone pole and evident in the faces of the men behind the flower stands and the women walking expressionless on the sidewalks.
It’s not flattering, but it is nonetheless true that it occurred to me that the setting was about perfect for the narrative that I was living and that Epstein’s accident was the required unsettling complication to an already compelling setup. Jallo’s emergence was an unfortunately blatant Deus Ex Machina moment, but, because it was true, it couldn’t be considered cheap-- or if it were, wouldn’t that be more on the reader than the writer? All that was needed was for me to wake up from my surgery and have my wife or my twin brother at my bedside to tell me that it was gone, this poison was gone. And that would be it. It was such a neatly packed four-month ordeal that it couldn’t possibly not happen in precisely that way. Except, I knew, it could. All of that could happen except the ending, and I could wake up groggy to my wife’s tormented face and my brother who wouldn’t be able to look me in the eyes, and my body, all of it, could be useless, a massive dead weight beneath my ruminating, tortured mind. It all depended on who was writing the story.
The whole team spent that night in an apartment that the hospital rented to patients and their families. It was just a few doors down from the hospital entrance, and it had enough rooms and a kitchen and all the rest that, for another occasion at another time, would have made it a fabulous home base for a New York City vacation. Now, though, it was either the staging ground for an insurgency or the last home I’d ever walk into unassisted.
Just before midnight, Scott prepared a plate of tortilla chips soaked in melted habanero cheddar cheese, and Kirsten gave me my last drink of water. After them, the only substances in my body would be what the anesthesiologist prepared. The apartment was quiet and serious, and I lay on the couch with my head in Kirsten’s lap while Scott and Janet sat on the floor watching television and my parents hovered and retired early and Paul sat in a chair somewhere in the periphery and we waited and waited until it was time to sleep.
We woke early, and Kirsten and I showered together because she had to clean my body with a special antibacterial soap and because one last moment like that seemed only right considering what my body could be twelve hours later and then, after that, for as long as I lived. As she scrubbed my chest, I watched her face, tense and ravaged but still the face that made me flutter, and it occurred to me for the thousandth time that she was to me what I'm not sure I could ever be to her.
Once dressed, the whole team was ready, and at six in the morning, we walked out the door, took the elevator down, and moved past a candle-lit shrine to someone lost in the towers and then on the sidewalk for a block, me in front with Kirsten on my arm and with Scott’s hand on one shoulder and my father’s on the other. I was calm somehow because I’d finally arrived at the moment. The glass doors to the hospital were in front of us. I sucked in a deep breath and paused and tried to feel what was inside of me and what I felt most of all was an odd kind of love – for those who were supporting me but also for myself. I was proud of myself. That’s what I felt. I was about to, on my own volition, walk back into another hospital where another man in a mask would invade me with my consent and whatever he turned me into would be what I would be for the rest of my life. Knowing that, I was about to walk in anyway, and that was a kind of courage that I hadn’t known I possessed. I couldn’t help but feel pride in that. I looked back at my people and thanked them silently and then said, “Here we go,” as I pulled on the handle, and we walked in together.
I'm writing this today on the front porch of the house we bought three weeks after my surgery. It’s summer ten years later, and I am fine, remarkably fine. I have tremendous pain in my left arm and a thick numbness below my waist. My left hand is a burning, throbbing mess. I lost proprioception, which is the ability to know where my hand is in space. It’s an interesting, inconvenient thing to lose, but it’s more of a nuisance than anything else. My feet and legs and everything else work just fine.
Dr. Epstein is dead, though, and has been for many years now – not of his brain injury ironically enough but from melanoma, a secret kind of cellular contamination that devours you from the outside in. I never met him. I did see a piece on a television news magazine about him, though. It showed him as a patient in the very neurological center he’d founded. He’d become a stroke victim of sorts, his speech slurred, his movement seriously compromised. He was a wrecked version of himself, but he presented triumphantly and talked about one day wanting to return to the operating room to do what he could to help others. He never did. After hearing of his passing, I wrote his wife a note thanking him for all his support. Dr. Jallo tells me she appreciated it.
The surgery went exactly as planned, which seems impossible because of what it entailed and where and when it happened, but that’s the world of our time. I woke up, and there were Kirsten and Scott telling me that Jallo had removed the whole thing, and I moved my toes and my legs and my arm felt like it was in flames, but otherwise I was whole. It was a remarkable outcome that required its own kind of courage to create. Don’t take my word on it – watch my kind of surgery for yourself:
For years, I’ve tried to make sense of it all: The pothole, the planes, the tumor itself, the way the universe seemed to orchestrate itself in my favor, finally, and at the expense of so many others. I wonder if it’s made me better, more appreciative, or at least kinder and happier. It made me worse in some ways because it confirmed what I had already suspected, which is that we are not just storytelling creatures but we are stories ourselves, authored by forces outside and inside of us, and that the flaws in my writing are the flaws in my living -- my solipsism, my tendency to make things knotted as I try to weave, to over think.
What comes naturally, like a tumor in a spinal cord or a habit of thought, comes at a cost. But then I remember that there’s bravery inside of me, too, and triumph everywhere, and generosity and love and the rest. And I caution myself that there are those in our lives who are suffering now. Nine years ago, my best friend’s wife died of her brain tumor. Janet’s sister still lives with hers. There’s more of that where it came from, wherever that is, but there’s also the sound of the breeze in the summer leaves, and the feeling of my feet moving as instructed and the living of my children, your children, and our wives and brothers too. And so, blind but sensing light in the darkness, we move on.