On St. Patrick’s Day in 1994, the vice principal of my school came and pulled me out of the kindergarten green food party to talk to the principal in her office. My sister Kaitlin and I sat in the uncomfortable leather chairs across from Sister Elizabeth’s desk as she blinked back tears.
“Your father just went into surgery. They found him a new kidney.” It was a surprise to hear her say it. My dad had already received a kidney transplant years earlier from a living donor, his half brother, but before long, that kidney had failed. He was back on dialysis, so far down the donor list that it would take years for him to find a match through random circumstance. But he happened to be in the hospital for a dialysis appointment when a perfect match came into the emergency room DOA. An eighteen-year-old in a motorcycle accident was giving me my dad back.
Almost as quickly as the news came, I was back in my classroom, sitting on the carpet with damp eyes while one of the class mothers passed out little plates of green pepper slices and broccoli dipped in ranch. I wasn’t crying because of the surgery; I was crying because Miss Bliss, the vice principal, had been crying. As far as I understood at the time, my dad getting a new kidney meant no more trips to the part of the hospital where I sat on his lap and watched Star Trek reruns while they filtered all his blood through a special machine that washed out everything bad. I was five. I thought a kidney was a giant bean that lived in your body and dialysis was another excuse to visit Space: The Final Frontier.
There are many ways to tell this story. I could treat it like a medical history and list all of the things that went wrong with my dad’s health chronologically, bullet-pointed. But though I’ve asked for his medical records more than once, I don’t have them. I don’t know the name of everything wrong, only what I can remember from constant repetition. My father was gravely ill before my family was even thought of. He was diagnosed with juvenile diabetes after going into a coma at Boy Scout camp at eleven. He often told the story of being on the bus to camp and having to pee so urgently that he did so several times during the drive, going in a mason jar and pouring the results out the bus window.
It was the sixties. The disease was barely understood and difficult to control. His father, Owen, also had Type 1 and was routinely mistaken for a drunk by friends, the police, even his own wife, because of erratic behavior from blood sugar highs and lows. He was pulled over for drunk driving the night my dad was born, and his best friend Lee found him at the police station. She begged the cops to let her give him a candy bar. He ate it and transformed from frustrated and foul-mouthed to docile and apologetic. They took pity on him and let him go meet his son.
When my dad was less than a year old, Owen was arrested for embezzling tens of thousands of dollars from the company he did accounting for. When the case went before a judge, he explained his situation. No one would give him life insurance as a diabetic. He knew he would die young and leave little behind for his wife and young child. He’d siphoned small sums away from his employer over the course of a year, hoping the money could act as his own private life insurance payout in case the worst happened and there was no one left to support his family. Every penny was accounted for and could be returned. The judge was kind enough to be lenient during sentencing, ordering Owen to return the funds, but keeping him out of prison. He was barred from any future accounting work, so he went into social work instead—advocating for people like himself, people forced to get creative in hopes of locating the resources they needed to survive. Owen died in his forties of complications from diabetes, when my dad was only eighteen.
Every year, on his birthday, my dad counted down the time it would take for him to outlive his father’s age. When my dad aged past Owen, he started keeping count of how many years he’d lived beyond when he expected to. Owen was his benchmark for what to expect from life.
At Owen’s funeral, there was a line of people around the block waiting to pay their respects. Many of them were social work clients of Owen’s. This was the only wistful story my dad ever told about his dad. I imagine him, still a teenager, shaking the hands of strangers as they passed through to say goodbye. The line was much longer than he’d been prepared to expect. It must’ve been disorienting to realize how much of his dad’s life he would never have explained to him, not because it wasn’t his right to know, but because there was simply no one he could ask. Owen’s family was small. My dad was Owen’s only child. He had been diabetic himself for seven years at that point. He was barely old enough to be called a man, and his only example of what continued survival could look like was gone. Owen succumbing to their shared disease, a disease that everyone understood at the time as a guarantee against ever reaching old age, was confirmation of what kind of life my dad could expect. Every day he was alive was stolen, and no matter how he chose to spend his life, something was surely coming to steal that time back.
A year after my parents got married, my dad’s kidneys failed. They had been living in a building where my dad was the super, and when he could no longer do maintenance because of his health, he lost that job and their apartment all at once, along with any certainty that he might get well again. He had just had corrective eye surgery and the rapid change in blood pressure brought on by kidney failure caused both his retinas to detach. Though the pain was excruciating, he wouldn’t let them sever his optic nerves, in hopes that one day, there would be some way to repair the damage. Once he was stable, his doctors did manage to salvage much of his vision in one eye, but the other lost function permanently, clouded over with a swirl of gray scar tissue. All of this happened before I was born. My parents and older sister moved in with my mother’s parents, which was supposed to be a temporary fix, but they were never stable long enough to move out.
They were told that because of all my dad’s health problems, they could never expect to have more than one child. But four years after Kaitlin, I was born. Less than two years after that, they had Chrissie. While my mother juggled three girls, and later on, my brother Owen, my father was in and out of the hospital. During my childhood, he had a major hospitalization once every two years, at a minimum. He lost his right leg below the knee and the toes on his left foot to gangrene. He contracted Legionnaires disease from showering with contaminated hospital water, and when he survived it, he found out it lived in the hospital’s pipes, that it cost less for them to settle out of court with any complainants than to replace the affected parts of their plumbing. He was talked out of a malpractice lawsuit because it would alienate him from the doctors who’d been managing his care for years.
He got sepsis; they cut him open from collarbone to pelvic bone and packed the open wound with wet gauze that had to be changed multiple times a day. My mother did this for him, packing the wound to soak up the infection, then peeling the gauze away once it had dried to replace the old dressing with a clean one. Once healed, the scar was a thick lightning bolt down the middle of his body. Depending on his dose of prednisone, he was a thin man but for a potbelly from the kidney transplants. He maintained a running joke that the reason he had no ass was that they’d unscrewed his belly button when they made the scar and never replaced it after he healed. “Unscrew your belly button and your butt falls off, just like that.”
He made the scars funny and it took away their teeth. The two on his left forearm from fistulas were the size of tie clips and haloed with white dots from the staples that closed them, and they looked like silverfish from the basement. His amputated leg healed with a broad smile from how the skin was folded back together to keep muscle surrounding the bone, and that smile belonged to a horse. He’d sit my baby brother on his thigh and pretend they were galloping along, neighing as he bent and flexed his knee.
I’ve read that in situations of trauma, the brain becomes a lockbox, concealing traumatic memories, but also concealing the benign memories surrounding them. In situations of on-going and repeated trauma, the brain can blank out entire months or even years of a life. I have very few memories from before middle school. I try to remember specifics from when I was young, and I can see the forest green carpet in our living room, my mom’s maroon Jeep with the faux wood stripe around its middle, my stuffed animals arranged in a very specific order around the edge of my bed. I can see objects, but I can’t see people. I know all the stories about what I would do or say, but I don’t have consistent access to myself at that age.
One of the stories about me happened around the time my dad got the kidney that kept him alive. We were at a family gathering, all the adults clustered around a backyard, grilling, drinking green-bottled beer. I went up to one of my mom’s cousins, and asked, “What do you think happens when we die?” I wasn’t scared or sad when I asked. I was frank. I really wanted to know. I don’t recall what the adult told me, because this memory isn’t mine. The person I asked told my mother about it, and they laughed. I received this story from her years after the fact, and I’m unsure what to do with it.
Something I do remember: though all of us were in pain, I was the only one in counseling. I’d seen my mother’s father die in the house when I was only seven and my mind replaced it with an image of ocean water rushing out of the bed where he was ceasing to breathe. After the funeral, I told my mother more than once that I wanted to go where Grandpa was. Because of what I saw, I thought he was at the beach. I tried to explain, but what everyone heard was that I wanted to die. They signed me up for group therapy with other kids who had trouble processing loss. We made crafts together once a week to commemorate our deceased loved ones while our parents had their own group behind a closed door, no doubt sharing strategies on how to cope when your child sees death up close and is not only not afraid but welcomes it.
I don’t think anyone who loved me was surprised at the idea of me being emotionally disturbed. I was the crier. I had childhood migraines from an early age, stomachaches and headaches no one could identify the source of. My mom had migraines too, and every time I was in pain I wondered if she was somewhere in pain as well, seeing strange lights or stabbed by every sound in the room. I would leave school early at least once a week, coming home hours before my sisters, because I was too overwhelmed to endure the rest of the school day. My mom would tuck me into her bed and set me up with juice and a Star Wars movie, or my tape player reading me stories until I felt safe enough to fall asleep.
The few memories I have of my dad from when I was little are of him coming home from work and sitting down on the bed to take off his shoes and put on slippers before dinner. I can’t see him sick. I don’t remember the hospital rooms he was in or what he looked like hooked up to all the monitors from that time, but I can smell his faded cologne as he drifted into the room after work, dropped his change into the milk jug on his dresser, and carried me down to dinner.
Reducing his life to a series of diagnoses doesn’t do him, or anyone like him, justice. My dad walked with a plastic-tipped cane scanning in front of him in arcs, so I’m sure plenty of people thought he couldn’t see at all, and I always delighted in their stiff surprise when he read a menu or signed his name, angry at the ways he was underestimated. He was legally blind, but he was also a programmer. When he lost most of his vision, he was offered professional training and ended up building databases for insurance companies, work he did for the rest of his professional life. He delighted in referring to himself as a blind programmer because of how baffling it was to people to hear those words working in concert.
When my parents met, my father was a bartender with a bunch of side gigs. He had been in college in Florida for marine biology, dreaming of studying the effects offshore oil drilling had on the ecosystems they disrupted, but he’d been forced to drop out of college when he got kicked out of ROTC for his chronic condition and lost the promised tuition refund provided by joining the military. He made ends meet any way he could think of. He hustled people at pool before he was even legal to drink. He sailed to Dominica with a friend and imported bananas for Grand Union until a hurricane wiped out the supply. He sailed people’s yachts down the east coast for them. He learned how to fix anything he got his hands on. He told wild stories about drug running that could’ve been just for show, but there’s no way to fact check how he became one of the people who raised me.
The man my father was in his own stories didn’t get tired or sick or complain. When he got into trouble, he talked his way out of it. When something went wrong, you could count on a sharp turn in the next breath where one scheme or another would put everything right again. He rarely told stories that weren’t before stories: before his amputations, before his transplants, before our family. The truth was much less carefree than what my dad would have any audience believe. The stories people tell about themselves, by design, act as a smokescreen for the stories other people are sure to tell about them. He knew what people saw when they looked at him, and he rejected it. He treated himself the way the brain treats trauma, partitioning off any vulnerability around what hurt as an act of continued survival.
He never told me what the hospital was like when he woke up from that coma for the first time, a child who had just lost a few days of memory and almost died when he was supposed to be at camp with his friends, but he told the story of him peeing in that mason jar and pouring urine out the bus window so many times. He made a point of offering up only vivid, unbelievable details when I asked him the hard questions about what it was like to be chronically ill. In a way, the stories I tell are similar. It’s hard for me to be direct about what hurts and where. It’s hard for me to even remember what I haven’t built a narrative for. I can answer questions if they’re asked, but I can’t see myself as sick. I can describe what pain I’m in, but it’s too intense to deliver it plainly without a story in the way, acting as an example, making circumstances easier to face.
I have very few memories that don’t take place in cold rooms that smell of antiseptic. I couldn’t tell you how old I was when I learned to read or when we stopped practicing cursive in school, but I can describe the view from the upper floor of the Columbia-Presbyterian hospital parking garage in almost perfect detail, how I leaned against the chain link fence that stretched between levels to keep the birds out and the people in.
I can tell you about the dead pigeon inside the sky bridge we walked to get to my father’s room during one of the many long recoveries from surgery, about its bent wing and open eye. How it looked fake, though I knew it wasn’t.
As traumatic as all of this might sound, I didn’t notice how strange it was to spend more time sitting at my dad’s bedside than I did doing anything else. My mother made sure we thought of the hospital as a place that helped; if my dad was there, it meant he was getting better. She would protect us from the worst of it, only taking us for visits when he looked well enough to be coming home soon.
Everyone on the transplant ward knew our family well. The nurses treated us like their own brood, making us rubber glove balloon animals and bringing Oreos from the vending machines. They asked about ballet recitals and chorus concerts my dad had to miss because of his health. Kids weren’t supposed to be allowed up there, but they helped sneak us into his room, knowing the odds. They bent the rules because none of them believed he’d be alive for long. None of them wanted to be the reason we missed one last day with our dad.
We were lucky; he always came home eventually.
I started writing everything I remember about my father in the same way he started to write his own memoirs in the years before he died: by audio recording. After he got laid off, he had a transcription program installed on the home computer and would sit in his office with the door closed and tell the computer stories. I was talking into my phone on the walks home from work, talking while walking to keep from getting distracted by any need to check facts. I did this once a week for six months. When I eventually transcribed the audio files, I had fifty thousand words of what I think I know about my dad, and as I reviewed the material in hopes of shaping it, I was stopped dead by fear of getting it wrong. That document has been living on my computer for several years now, frozen solid in its wrongness.
My dad’s memoir is similarly stalled, but he has a much better excuse. He died in June of 2011, a month after his birthday. He’d been hospitalized for a dangerously high fever and was never released. He had a DNR, but there was some mistake in his care, and when he was having trouble breathing they put him on a ventilator and transferred him to a rehab center, where we visited him on his birthday to read him David Sedaris and apologize for the circumstances. He loved humor, especially humor in storytelling. He listened to News from Lake Wobegon every week as religiously as he watched Meet The Press, and so we always bought him books on tape of whatever was funny and selling big. We took turns reading to him that last birthday, and every time he laughed, his throat muscles would tighten around the ventilator still down his throat, and then the laugh would turn into a wince. By forgetting his own situation long enough to laugh, he was painfully reminded again. We all kept apologizing for it, but he insisted we keep going. He wanted to laugh, no matter how much it hurt to.
I have what I consider a deeply rational fear of doctors. As many times as a doctor saved my dad’s life, I’ve seen the toll of every mistake play out in real time. He lost his second leg while being cared for by an army of inexperienced residents because his regular doctor was either overburdened with administrative work or, as my dad insisted, too senile to provide meaningful care. His doctor was old, but also too valuable after a long career at this powerful teaching hospital to be forced into retirement. When he was told that after a year of unsuccessful intravenous antibiotics, he required a second below the knee amputation, my dad checked himself out of that hospital against medical advice, refusing to let the same people who’d botched his care continue to treat him. I’ve heard him narrate his litany of co-morbidities from memory to people who absolutely should’ve read his chart before making any recommendations for care but clearly hadn’t. They’d start to prescribe some medication and he would volunteer which of his daily medications it was contraindicated for. His health was terrifyingly complex and precarious, and the precarity of his many conditions was only exacerbated by poor communication between his caregivers and what has always seemed to me like a fundamental breakdown in the American medical system: if there isn’t an easy fix for something, there usually isn’t any fix at all.
My mother’s father refused regular interactions with doctors, and though he died in pain, he also was afforded the dignity of dying at home. My dad didn’t get to do the same. I spend a lot of time thinking about what kind of time is afforded by major medical interventions. Whether it’s worth it, to close the aperture on one kind of pain while opening the door to another. I learned recently that on the brink of his first amputation, my dad was adamant that he’d rather die than live without a leg. I don’t know if someone pleaded with him to change his mind, if that person was a doctor. I don’t know if my mother made the decision for him when he descended into a coma. If he woke up from the anesthesia in a life he thought he’d safely avoided.
I think of medicine the same way I think of the God I was raised with. Both provided hope for my family, but neither devotion delivered on what was promised. The interventions of doctors gave us some of what we wanted, but never came close to affording best case scenarios. The presence of faith in our lives was a similar distraction. It gave us something to lean on to dissolve our despair, but God was really just someone bigger to blame when the doctors called again with more bad news.
Once, during dinner, the phone on the wall in our kitchen rang. Mom got up to answer it. Someone was calling from the hospital about a matter of some urgency.
“We need you to come claim your husband’s body from the morgue.” Mom looked over at the table, laughing.
“I think you have the wrong number. He’s right here having dinner.”
“Ma’am, it says right here on the toe tag—Sean O’Neill.” She laughed harder.
“I don’t know who you have there, but it’s not my husband. He has no toes.”
I’m not sure I can recall a time where my dad laughed harder than he did after she hung up the phone and explained the mistake. I’m not sure what would’ve happened if he’d worked late that night, not been in the kitchen at all. If she would’ve believed it was him, toes or no toes.
While I was in college, my dad went for a walk to the convenience store up the street from our house to buy lottery tickets and had a massive heart attack on the sidewalk in front of the store. The clerk knew him well and called an ambulance immediately. It was the sixth time (at least) my father had died clinically, but they revived him and got him to a hospital in time to keep him with us.
He had to go doctor shopping to find someone willing to operate on him. He eventually underwent sextuple bypass surgery, a procedure so risky that the surgeon he’d settled on told him there was more than a fifty percent chance he would die on the table. “If it gives me even one more year, the risk is worth it.” After the surgery, his doctor told my mother that the echocardiogram was the worst he’d ever seen, but it had barely scratched the surface of what he found once they were in there. Had he known how bad it actually was, he never would’ve performed the surgery. But it was a success. My dad survived the procedure, stabilized, and was discharged.
Almost exactly a year after his high-risk open-heart surgery, the spring of my college graduation, he was running a dangerously high fever. The fever meant he had some kind of infection, which put him back in the hospital for the final time. He spent his last birthday, the Sedaris birthday, on a ventilator, frustratingly unable to speak. There were so many reasons seeing him that way was difficult, but it was most painful for me because his stories stopped. He couldn’t talk his way back to vitality. The silence was a sign there was likely no miracle procedure left that could save him.
His body had been opened, closed, scanned, and medicated too many times for him to bounce back like it had for years, defying expectations. My sisters, brother, and I took turns reading aloud to him, taking breaks in the hallway to hold each other and cry.
In those last months of visits, I wasn’t only grieving the man who had been dying my entire life; I was grieving for all the stories that were going to die without being told. I never got to ask him about the non-myths that he skipped over in favor of always telling the big stories. I don’t know how he felt when his parents divorced, what his favorite beach was, who taught him how to sail. I don’t know many of his hopes. I know even fewer of his regrets. I know he collected bottles from a lot near his family’s apartment to buy bread once when there wasn’t money for food. That he took the change from the bottle deposits and the money his grandmother had given him for his birthday to the grocery store, brought a loaf of bread to the cash registers, handed all his money to the clerk and told her to count out what she needed because he didn’t know how much to give her. That he got in trouble for walking all the way to buy groceries without an adult. This is one of the few stories I know about my dad where he’s truly helpless.
The promises medicine makes about more time have a way of tricking us into believing that even the most fragile people might be somehow immortal. Hearing about his adventures in New York in the seventies or how he pool hustled his way through a few semesters of marine biology courses was plenty entertaining, but I took for granted that as long as he was in the hospital someone would find a way to make him well. I had never thought to ask about the quiet things, like what kind of music he best liked to listen to on his train commutes or what his favorite books were or what he thought about when the slow churn of the machine doing his breathing for him kept him awake deep into the night.
It has been eight years since he died in hospice. I hate writing that sentence. I hate writing about him in the past tense, speaking about him as if he no longer exists. Sometimes I choose not to. Sometimes, especially to people who have no reason to know that he’s gone, I talk like he’s still alive and just far enough away that I can’t visit him regularly. That feels true.
On the rare occasions he had to travel for work, he would joke at the breakfast table that he hoped the plane would go down. According to him, if you died in a plane crash on a business trip, it provided the highest possible insurance pay out. I don’t know if this is true, but he always seemed so sure. It was his version of his own father’s nagging worry that the world would take him out of it and leave nothing in his place. It feels important to finish talking about him here, where he’s eating cold cereal in a suit, and I am still small and sitting on his lap, threatening to smell off all his aftershave before he leaves for the day. He tells me that if I inhale too deeply, he’ll start to smell unwashed. But I argue and tell him I have to. That if he’s going to die, I don’t want to forget.