In the beginning, I would climb into his bed and feel his hands move down my waist. The whole time, I told myself we just needed something that felt familiar, needed to prove that a part of ourselves still belonged to the outside world. But during our second month the routine changed. After Lights Out, I burrowed next to him, started kissing his chest. He sat up and shrugged me away. At first, I thought this was a symptom: the prions were attacking his brain, he was losing his memory, he no longer knew who I was. Quick, I remember saying to myself, as though there was something for me to do.
In the dark, he started talking about his wife. He told me about the tangles of hair he would find in the bathroom, like tumbleweeds, or the way she used to unroll maps on the floor of their travel bookstore and trace the blue lines of rivers with her pinkie finger. He was remembering perfectly well.
His wife died in the third week of July, at five in the morning, at the Penn Presbyterian Medical Center in Philadelphia.
They lived in Philadelphia, Louis and his wife, in an apartment above their travel bookstore. I lived in a basement apartment on a dead-end street, on the eastern edge of Somerville. I want to believe I can have a fresh start here, in the Hospital.
That night, after Louis stops talking, I concentrate on where I am, in a safe place, in the care of medical experts, but the truth is our Hospital is in middle-of-nowhere Kansas and it is very dark. There aren’t even shadows on the walls.
When he starts to snore, I crouch beside his bed and watch him sleep. A hand rests over his heart. His eyelids flutter, and I wonder if he’s dreaming.
In the Hospital, I can’t get away from the idea that sleep is preparation for death.
I slip out of our room and down the hall. The arched window looks beautiful and foreboding in the night. The floodlights illuminate the ground outside and it’s a relief to be away from the deep dark of our room. I look for the barefoot woman, but don’t see anything except falling snow, the flakes fat and drifting sideways. I’ve been told that in this part of the country, once the snow begins, the cold will be endless.
I remember the perfect cartwheel the pilgrim did before he wandered out into the plains. I lose my slippers and run down the hallway with my hands over my head. Step, reach, kick. Soon I’m dizzy. My brain rocks back and forth inside my skull.
Here is a dream I keep having about my mother: We are sitting at a round table, a glass of water between us. She is faceless, but I know it’s her. We are both staring into the glass. There’s a gold coin in the bottom. We want to get it out, but don’t know how.
I fall four times, knees and elbows smacking cold linoleum, before I get one right. No one has ever called me a fast learner.
3.
For most of my life before the Hospital, I was an orphan. As a baby, I was left on the steps of Brigham and Women’s Hospital in Boston, in the winter. A nurse found me wrapped in a white T-shirt and rolling around in a cardboard supermarket box, the kind of thing you put oranges in. I was in the early stages of frostbite.
From my first group home I remember: sleeping on mattresses with springs that time had turned flat and hard; a hole in the staircase that was a portal for winged roaches; sandwiches made of Wonder Bread and grape jelly; a communal bathroom with snot green walls and a ceiling dotted with mold. In this bathroom, all the sinks dripped. In this bathroom, I found tampons, heavy with water and blood, clogging the shower drain. The light was always flickering off, usually when someone was in the shower. The girls at the home started spreading rumors about a ghost in the bathroom, when we all knew the ghost could be any one of us.
This was in Roxbury. Back then I dreamed of the countryside: fields with mazes of tall grass, graceful rivers, climbing trees. Nearby there was an overgrown lot surrounded by a chain-link fence, and sometimes I would slip through a hole in the fence and walk through the dead grass, ignoring the shattered glass and the shadows of crumbling buildings, pretending I was free.
Once a fire alarm tore open our night. Eighteen girls raced down the staircase, led by our overnight counselor, a woman who wore white knee socks with sandals and her hair in a thick braid. Eighteen girls scattered across the front lawn. Some had thought to pull on shoes and some, like me, had just run. It was September and already there was a sharp chill in the air. I could feel a splinter settling into the arch of my foot. I stood on one leg. The night was dark and still. A grease fire had ignited in the kitchen. We watched smoke blacken the windows as we waited for the howl of the sirens, waited to be saved.
The kitchen was scorched long before a fire truck came, an early lesson in exactly how much the outside world cared about us.
I didn’t know anything about my real mother until the sickness. That was the second thing that brought me to the Hospital.
During the sickness, a company called Last Rites was formed. For a fee, they got the dying whatever they wanted. The first person they kissed. A vintage arcade game. A jar of sand from a foreign beach. In the early days of August, I got a call from a Last Rites representative who said my aunt wanted to see me. When I told them I didn’t have an aunt, didn’t have any family at all, they said I did. Her name was Christina. My mother’s sister. She was at Mass General. If I ever wanted to see her, this was my chance.
I was exhausted. I hadn’t been sleeping. The nights were a long scream of emergency. I’d started seeing orange spots in the air, small discs that slid through the streams of dust and light in my apartment—a symptom, I was increasingly sure, of something incurable. The T was closed. There were no taxis or buses. I hadn’t been outside in days, surviving on soup cups and lime Jell-O and getting stoned on cough syrup. My apartment felt like a tomb, the door a seal—would I ever get out? The representative’s voice had a hypnotic effect on me. I couldn’t tell if it was a man or a woman speaking. They told me to wait ten minutes and then go outside.
The street was scattered with flyers warning people to stay in their homes and refuse contact with the sick. There was a drawing of a man peering out a window, one arm around a woman, the other around a child. Some flyers lay in the gutter, the paper a black pulp.