The Ocean Floor

My father was a relentlessly witty, acerbic, brilliant, big-hearted man. A beloved professor and expert on Classical history and epic literature, he was a clown and a storyteller, often irreverent, at times gleefully inappropriate. He loved children, particularly his children. He loved the beach, or perhaps loved that his children loved the beach, and would free us from our land- locked state once a year to hole up for a week in a little pink house on the coast of North Carolina. He held our hands while we jumped through the waves, let us wipe our stinging eyes on his t-shirt. He loved cheeseburgers and dark chocolate. Coffee ice cream. Chinese food. In the mountains in the middle of Tennessee we were eating meals he cooked from The Joy of Chinese Cooking, squealing with delight while he dramatically chopped pork with a huge cleaver and a maniacal look in his eye. He was ruthlessly funny—and I wanted nothing more than to make him laugh, to do something, say something, write something he found hilarious. This is still true.

He had a very rare, progressive disease called scleromyxedema. This included accumulation of mucin in the skin, causing large papular bumps, which were deep red and dome-shaped, gathered on his face, particularly on his forehead and around his eyes, and sclerosis, a hardening of tissue on his knees, elbows, and hands. The disease had other bizarre symptoms beyond the skin—in his case it caused a seizure disorder, myopathy on his left side, affecting his shoulder and arm, and eventually, pulmonary dysfunction, which is ultimately what killed him. After the autopsy they told us it looked as though his lungs were full of broken glass.

He had his first seizure when I was 4 and my sister was 7. We were at my grandmother’s house. He had bronchitis, a cough, nothing terrible. Then he collapsed on the floor in front of us. I have a faded memory of being hurried into the back bedroom with my sister. Go with your sister, they said. I thought at first it was some strange reaction to the respiratory virus; I remember telling kids at preschool My dad had a cold and then he fainted! I didn’t understand it was the very beginning of a long deterioration. From then on he would have a bad seizure every year and a half. We came to expect them, to dread them. We were little girls whose dad would shake violently and uncontrollably, disappear into the hospital for two weeks, and then come home smaller, more fragile, unable to drive us to school. I stopped remembering him ever being healthy. Now I have no memories of that man, only the pictures I put in an album of us when we were very young, before the disease began to stake its claim. Him smiling fiendishly while cutting my sister’s birthday cake—him pulling us across the yard in a small wagon—him blowing bubbles in a cluster of young kids at someone’s party, young mothers looking on, amused, my baby bottle tucked into the back pocket of his corduroys.

The changes to his skin crept in quietly, in increments. His hands changed first. They grew puffy and red, then the skin hardened over them entirely. He said he felt as though someone had taken a hammer and shattered every bone in his hands. They throbbed, were difficult to move. The worst of it was on his face, the papular bumps growing in size and number until he was unrecognizable. My stepmother told me one of his doctors called it obscene. It’s obscene what’s happening to you, Bill. Obscene. I was too little to understand the details of any of it; I knew nothing about the disease itself, few people did. I just knew he was strangely unwell, had

periods of great fragility, and he looked, as he would say, monstrous. People stared, especially other kids. From the age of 5 I felt a pressing, persistent need to protect him. To save him.

Death was always in the corner of the room, sitting in the shadows. And then sometimes it stepped out into light and stared us in the face.

When my stepsister and I were 13 and my older sister was 16, he had a severe seizure, brought on, again, by bronchitis. It was the Blizzard of ’96. The EMTs trekked through the snow to get to our house, leaving icy puddles on the rug. My older sister was sleeping over at a friend’s. My stepsister and I hid in her mom’s cramped office; I remember pressing my face into the carpet, listening to the EMTs shout to each other in the other room, my dad’s body banging itself against the bathroom floor, his strained, animal yelps. He seized twice more at the local hospital, his fever growing, and then started seizing uncontrollably. They moved him to a hospital in Nashville, where they told our stepmother that his lungs would fail overnight, followed by his liver, and then his heart. They sent a priest to find her in the hallway. His lungs failed. His liver failed. He fell into a coma. His heart never failed. (It is difficult not to find poetry in this). I remember asking my stepmother on the phone, Is he gonna die?, and her long pause before she said, plainly, I don’t know. It was the first time an adult spoke to me with brutal honesty.

The coma lasted three weeks. He came back in fragments. He told us he had one long, awful dream in which he had to save my sister from some terrible fate, and he could never get to her in time. Now that I have a child I understand dreams like this. He told us he had visions of dolphins swimming just beyond his reach, in his peripheral vision. He told us he saw writing scrawled on the ceiling of his hospital room. The first time I spoke to him on the phone after he woke up I told him my 7th grade class was making a quilt, each of us contributing a square. A quilt, he said. A quilt. He didn’t remember the word, I realized. His voice sounded so soft, sweet, like a young child’s. It’s like a blanket, I explained.

A few pieces of him, I think now, were lost forever in the coma, fell into the grips of the disease and never returned. When he came home, weeks and weeks later, he was thin and grey, the smallest I’d ever known him. He wore sweat suits around the house, toothpaste stains down the front. He had horrible bedsores on the bottoms of his feet. I learned to clean and re-dress his wounds at night, to help with his PT exercises. I liked doing it. It felt, as few things did to an anxious 13 year-old, straightforward.

The years that followed his “first death,” as he called it, blur together in a swirl of juvenile high school worries and profound swathes of fear. I watched my funny, loving father become both more feeble and more angry. He fell while dragging our garbage cans down the long driveway, short of breath. They told us the disease had begun to take hold of his lungs. He often flew into fits of rage. A look would come across his face I’d never seen before. By the end of my senior year, he was on a steady stream of oxygen, wheeling a small tank behind him wherever he went, and hooked up to a heart catheter, a pump pushing medication directly into his chest from a small bag he wore around his waist. He and my stepmother separated and he moved into a dimly lit rental house near the old little league field with our three cats, which is where he spent the rest of his too-short life.

My mom and stepfather took me to college. My dad was far too sick to travel the distance to Providence. I didn’t know if I should go, though I longed to go, to be young and dumb and free and know people who hadn’t known me my entire life, as everyone in our town did. I got a job with the University’s food service, worked late nights at the pizza place on campus. I wore scarves over my hair, sang loudly to the music our supervisor played, made a lot of drunk kids chicken parm sandwiches, and tried to understand where and how I should be. My dad and I wrote each other emails; I called him from my dorm phone using a calling card my mom bought me at Sam’s Club. I tried to talk him into having someone stay with him a few nights a week, worked with some of his friends to organize care. When I came home for Christmas I was shocked at his deterioration. I finally understood that he would not improve.

I lived with him that summer, shelved books at the University’s library during the day, and took care of him in the early mornings and during the night. He could barely walk by then, was slamming into doors and scraping up the walls of the rental house in an electric wheelchair. He was badly swollen, his abdomen distended, and every two weeks a friend would take him to the hospital 30 minutes away so they could extract the excess fluid from his body. His friends helped me set up a hospital bed in his room; I stayed up with him most nights and ferried him back and forth to the bathroom, changed his diapers, massaged his skeletal shoulders and swollen legs, changed his sheets over and over and over again, sometimes three times a night. I learned to mix and replace the medicine that pumped through his heart catheter, coached by his pharmacist friend. I had eight minutes to replace the old pump with the new. If for some reason I didn’t attach it in time, he would die. I was nineteen, at the precipice of understanding that I wanted to be a writer. You’ll have lots to write about,” my mom said to me on the phone.

I went back to school in the fall, as he urged me to. He continued to teach from the rental house, his students gathered around his recliner. I got my first part in a play. I took my first playwriting class, taught by someone I deeply admired. I felt that exquisite, exultant feeling that I was doing something I really wanted to do, that I was starting to live the big life I had envisioned. And then he died. It was March of my sophomore year. He was admitted to the hospital with an infection. His friend called me in my dorm room at 5AM. She was there with him. I was not. I will always regret this.

When we were up all those nights that last summer, my dad and I had long, sometimes wonderful talks, him sitting on the toilet, me perched on the edge of the bathtub, my knees pulled up to my chin. You know when you were a baby, you used to wake up when I had a nightmare, he said to me. We were always connected in some inexplicable way. I loved this notion, felt proud of it, protected by it. His heart was big and wild, full of poetry, hilarity; I wanted mine to be the same. The line between parent and child had blurred years before at my grandmother’s house, when I first saw my vital, sturdy father convulsing on the floor. It continued to blur over the rest of our fifteen years together, until it disappeared altogether that summer in his cramped bathroom. I wiped away some fluid that leaked from a scratch on his leg, shuffled him back to bed on my back, sat with him until he fell asleep. His body was my body was his was mine was his was mine. We were connected. Inexplicably. Always.

<<<>>>

My first memory of anxiety is a memory of an ill-at-ease, shadowy, childhood feeling. Every time we’d near that year-and-a-half mark and waited for another seizure to come. I had stomachaches. A restless, shifting, churning feeling in my gut. My teachers often remarked that I was pensive. You’re so pensive, Rachel! We lived in a tiny town. If you heard an ambulance go by while playing on the playground, you probably knew whoever was inside of it. Could have been my dad. Sometimes it was.

One summer while I was visiting my mom in North Carolina, I started getting pains in my hands and my teeth. I would lie awake in my bunk bed at 1 or 2 in the morning, sweating, terrified.

My hands throbbed; my teeth throbbed. I tried to flex my aching fingers back and forth, whispering to myself oh shit oh shit oh shit. I remember knocking on my mom’s door in the middle of the night, saying I can’t sleep, what can I do? Sometimes she’d make me warm milk and graham crackers; sometimes she’d give me a fragment of an Ambien. Sometimes I slept in her bed. I didn’t tell her It’s happening, I think it’s happening—I’m becoming him. I folded the thought over and over itself, until it was just a speck of a thing, dropped it down somewhere I couldn’t see it.

A few months after my dad died, the Anderson Gallery at Virginia Commonwealth University did a retrospective of my grandfather’s work. Rooms upon rooms were filled with my father’s father’s paintings—portraits, abstractions, figures from Greek mythology. Family faces everywhere, on canvas and in the flesh. Within minutes of walking in, I started shaking, crying uncontrollably. It was the first time I felt my body take on its own wholly separate life, watched it recede from me while I looked on in disbelief. I stood outside of it, watching it shake, cry, struggle to breathe. I kept asking my sister, laughing, Oh god why can’t I stop? Stop, I called out to myself, stop, stop, stop.

In the fall of my junior year, panic came for me again. Like a swarm of bees. I went to see American Splendor at the little theater on Thayer Street. Paul Giamatti as Harvey Pekar sat grey and listless on the floor of his bathroom in a stained white t-shirt, sick with lymphoma. I started shaking in my seat, my body flying off in its own direction, hurtling itself away from me while I watched in astonishment, thinking, wait, but we’re just, we’re just watching a movie! I stumbled across the seats, tripping over people’s legs, ran upstairs and took shelter in a tiny bathroom stall, my chest heaving. I felt a hole open up in me, looked down inside, and understood oh, oh, there is no end. There is no bottom to this.

I left school to study solo performance at LaMaMa in New York for a semester. I wanted to go somewhere where I could breathe, and be wildly alone, and I probably knew I needed to write something to get to the other side of the grief. Or through the first wave. I didn’t know then that there would be countless waves. Waves forever. Swim through it! my dad would yell at me as we stood on the sandbar, the water up to our chests, a wave curling toward us, Swim through it! If you turn and try to go back, that’s when you get dashed on the rocks! LaMaMa housed us at the 92nd Street Y. I lived on baby carrots and peanut butter and soymilk that I kept in a mini fridge. I wrote my way through the next six months. I started to understand what kind of artist I wanted to be.

I moved to New York three weeks after graduation with very little thought or much of a plan. I was free for the first time of any routine or responsibility to care for anyone but myself. It was unmooring. The panic I had kept at bay for the past year came roaring back, its grip tighter this time, more persistent. I kept a futon on the floor of a barely-furnished apartment in Astoria with two friends, where I would lie but not sleep, listening to the traffic outside, sirens blaring. I imagined horrible things in that tiny room. Dark figures breaking through the window. Torture. Rape. All the ways I was going to die alone. I’d sleep between 5 and 7 AM, then get up to go to my unpaid internship. I wasn’t writing. I wasn’t doing anything. I was a monster, deeply, darkly depressed, mean to my friends, my sister, unrecognizable to myself. My roommates intervened and told me I had to get some help. I raged at them. They were right. I was embarrassed. I got some help. And it helped some. For awhile.

I started writing again. I started writing a lot. I met the man who I would marry.

I was at a writers’ residency on the central coast of Florida, living in a tiny house in a swamp, when my left arm and leg went numb. I was writing a play called The Noise, in which a woman starts hearing a persistent, thrumming noise at night that no one else can hear, including the man she has recently started to love very deeply. She starts venturing out into the middle of the night to stand under a lone streetlamp and have long, looping conversations with The Noise, a character with yellow eyes, like an animal. The Noise keeps trying to hold her hand, then her arm, then eventually swallow her. A week into the three-week residency, my hair started falling out, the muscles in my neck and shoulders seized up; it became painful to move. Then my arm went numb, and my leg soon after. I think this is stress, my mom said on the phone when I called her, worried. I didn’t think I was stressed. I felt immensely lucky and excited to be at the residency. It felt good to write; it felt good to write for long spans of hours, surrounded by other writers in their own tiny houses. But as my strange symptoms progressed, an old thought unfolded itself. I’m becoming him. And then that dark hole opened up in me, a familiar, spiraling tunnel without an end, and I found myself staring down into it, then inching toward it, losing my footing. Falling in.

The numbness lasted nine months. After three inconclusive MRIs, six months of physical therapy, far too much money pulled out of savings, and long nights lying awake on a heating pad, switching back and forth between the bed and the couch, panic beat incessantly in my chest. I was hollowed out, in pain all the time. On a desperate whim I went to see a chiropractor that practiced kinesiology and integrative medicine, after my former roommate mentioned the man had healed his back injury. The doctor’s office was near Grand Central. I rode the rickety elevator up thinking What am I doing?, but also hoping with frightening intensity that the guy would just touch my forehead and all the pain would evaporate, that the feeling would come flooding back to my limbs. The doctor was kind, maybe ten years older than me. There were three samurai swords displayed on the wall in the exam room. He sat and listened to my long, looping timeline of symptoms. Medical history. Family history. He carefully examined my neck, my shoulders, my range of motion. He looked in my eyes. He was quiet for a moment, and then said, I think this is emotional. But— I said, and he cut in, I don’t mean you’re imagining the pain—the pain—the numbness, all of that is real. But I think the cause of it is emotional. But how could—I stammered—how could I emote this into existence? My arm is numb! I laughed, which is what I do, it has been pointed out, when I am most vulnerable. Your nervous system is

battered down, he said. You’re in survival mode. And I think you have been for a really, really long time. That has consequences. Well…God, I said. I laughed again. He adjusted the table, said Let’s see if we can reset you. I’d love to be reset!, I joked, wiping my face fervently. He handed me a tissue. Tell me more about your dad, he said.

<<<>>>

The city shut down in March, on the anniversary of my father’s death. Beware the Ides of March, he would have said. I’d been on the subway all week. I’d been to see our friends’ play. I hugged everyone I knew there. We’d talked outside in a small huddle, close, laughing. And then.

Many days I feel truly, deeply, darkly scared. It crashes down in quiet moments of the day, after our son is asleep. Sometimes I have chest pains, like glass in the lungs; sometimes my throat closes in on itself. There are migraines, back spasms, nausea, exhaustion. And then I think, here it is, the virus has come, here it is, here it is to unlock some strange code in me, unlock the horror that awaits me, the monster within, as a virus once did for my dad. Death sits in the room with us every day, stares at us plainly.

In my worst moments, I see myself in a hospital corridor, dying alone, unable to hold my child’s hand or talk to him or tell him goodbye, that I love him, that I’m sorry. I do to him what was done to me. I send him into the same swirling hole I’ve been in for 30 years, spinning around and around, face pressed into the carpet, shaking uncontrollably in a movie theatre, huddling in a bathroom stall, hair clogging a drain in Florida, crying in an exam room with three samurai swords on the wall. I pull him into the horrible churning darkness. Because his body is my body is his is mine. He inherits all this.

The better times are those swallowed by routine, preparing meals, struggling to get a child dressed, bathed, engaged, educated. Our son brings structure to the long days. We talk to our family and friends on the phone. We take walks through industrial Greenpoint. We point out dandelions. We throw rocks into the Newton Creek, watch the excavators on the opposite bank lift trash onto a barge.

I sit in deep uncertainty about how my artistic work will continue. Or if it should. My urge to create feels very quiet and small, partly because our child is so young and demands a lot of careful attention. And partly because he is specifically our child, all he wants is for us to make up stories, every animal and object in the house has its own voice, its own history, is part of some kind of epic and wild adventure that continues to unfold over the course of the day. After 13 hours of that, and the never-ceasing thrum of anxiety, both financial and existential, there is little, if anything, left to give to a play. Most days that is all right. What should a play be now, anyway? I don’t know. What sort of writer should I be now? I don’t know. Childbirth and parenthood broke me open, ferried me to a different self. I suspect this pandemic will do the same for most of us. It is already reshaping our thoughts, our imaginations.


For now I am trying to bear witness. Record some of the details of each day. Not think too long on some of the things that tied me in knots just weeks ago. Things like my trajectory. Recognition. These feel so hollow and useless. Vile, even. So I am trying to bear witness and help in some small way, clean the hallways of our shared apartment building, leave thank you signs out front, donate what we can to feed people and protect healthcare workers. I don’t know how we will proceed, or when this will end, but I hope we artists will have a hand in the part that comes after. When people need stories like never before.

My son has a book of Maya Angelou’s poem Life Doesn’t Frighten Me, a collaboration with Jean-Michel Basquiat. My mom gave it to him when he turned 3. It is beautiful and haunting. Dark, but joyful too. He’s fascinated by it—the rhythm of the repetition, the eeriness of the artwork. I have been thinking of it a lot. Particularly the last part: I’ve got a magic charm / That I keep up my sleeve/ I can walk the ocean floor /And never have to breathe. I am connected to my father, always, inexplicably. But perhaps my inheritance doesn’t have to be disease, or pain, but resilience. Perhaps that’s the magic he gave me.

And here we are now, on the ocean floor. Walking through the hours, pushing against a sea of information, grief, anger, fear. The pressure is immense. Enough to crush one’s bones, certainly one’s heart. But on we press, enduring, until we might swim to the surface, survey the wreckage, let the sun beat down on it all, on our faces, our aching chests. And we will breathe. And we will reach for each other.