This is an excerpt from a longer essay titled “The Ocean Floor.” The full piece will be part of SPACE on Ryder Farm’s CSArt Featured Artist program, which commissions alumni of SPACE’s artist residency programs to create a piece of homegrown art that will be distributed to the organization’s 130 CSA (Community Supported Agriculture) member households.
The city shut down in March, on the anniversary of my father’s death. Beware the Ides of March, he would have said.
My father was an 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 that he found hilarious. This is still true.
He had a very rare, severe, and progressive skin disease called scleromyxedema. This included accumulation of mucin in the skin, causing large papular bumps, deep red and dome-shaped, to gather 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, and 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 the doctor said it looked as though his lungs were full of broken glass.
We were at my grandparents’ house in Richmond when his first symptom appeared. I was four; my sister was seven. He had a minor respiratory virus, a cough, nothing major. 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. We huddled together on a twin bed, our grandfather’s paintings crowding the walls around us, our father’s strange, animal yelps sounding in the next room. Did he faint? I asked my sister. She held my hand. We didn’t know it was the beginning of his slow, horrible departure.
I lived with him the last summer of his life, shelving books at the university’s library during the day, and taking 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 his 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 thirty minutes away so they could extract the excess fluid from his body. 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.
When we were up all those nights that 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 grandparents’ 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.
The city shut down on the anniversary of my father’s death. The Ides of March, The Ides of March I kept thinking to myself.
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 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 take walks through industrial Greenpoint. We point out dandelions. We throw rocks into Newtown 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 creative 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 thirteen 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. 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. 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. And, I hope, we will build something new.