Insomnia Makes Each Night a Fight to Daylight

It wasn’t the fear of death that kept me up at nights. A lot of the time it felt like I was waiting for something. Even when I was in pain, the nights were sometimes sweet.

Each night around 1 am, my father’s cat, Charlie, would come and sit at the foot of my bed. About three months into my cancer journey, Charlie’s kidney started to fail and he had to have a nightly IV bag. “We’re about two steps away from a MASH unit,” my father said.

My cancer spread to my lungs. I also took a significant dose of bleomycin, which is known to decrease lung capacity. Each night before I would turn out the lights, I would blow out a candle that was on a nightstand from my bed. I told myself that if I could blow out the candle, my lungs were still okay. The ritual was like a prayer. You could lie to yourself. It made things easier.

Each night I’d wait for death or more treatment. I never thought of going anywhere. I never thought of running. Or chickening out. I’d fight each night to make it to morning when the first glimpses of grey sky would peak through the tree outside my bedroom window. I’d put on my clothes. I never felt disturbed or uneasy in the morning. The mornings were peaceful and so pretty that they hurt. So peaceful that you’d want to hurt it back.

When I was living on ice chips, my father would check on me before he went to bed. “How’re you doing?” he’d ask. Enriched by Gordon Ramsay and Kitchen Nightmares, I’d give him a soft, spacey smile and say, “Real good. The cancer’s real good today. Waiting on a jerk chicken pizza.”

After my 14 hour stomach surgery, I could sleep during either the day nor the night. I became a zombie. I would put on a disco Spotify playlist at night and listen to whatever came up randomly. For a couple months, if I was lucky, I would get an hour or two of sleep each night. No matter how I positioned the pillows, I couldn’t sleep. When the sun came up, I would put bandages on my bleeding feet and the open wound on my butt and slip on a new pair of adult diapers. There was something orderly and reassuring about the process. The cancer was gone by that point. I knew cancer was not going to kill me. I knew the score. The battle had been fought. All I had to do was limp out of the wreckage. A very banged-up survivor.

Sometimes, though, the nights were brutal. Sometimes, you would lay in the darkness staring at the ceiling, cut off from the outside world, and loneliness would hit hard. I’d feel like there was no one with me. That no one cared. That I could just die. That something in my body could just snap and I’d go too far south. I’d tell myself that was a lie. But then I would remember the people from chemotherapy who died. Mostly these people would just disappear from treatment, never to be spoken of again. One time, though, I saw a lady die while the nurse was trying to access her port. There were other ghosts. The ghosts of people you’d known. Ghosts of old friends. Former lovers. Family members who passed. After a while, as the night deepens, your senses sharpen. I would pick up on the humming of the refrigerator, the traffic in the distance, even the moon would start to hum. The crickets held all night dialogues that summer. Sometimes, I would sit up in the middle of the night and stare into the darkness to find nothing. I would get up and open the door to my bedroom so that if something happened to me, I could try to scream and if I got lucky my father would come running to help.

I remember the monotony too. Bad late night television. Endless shuffling of pillows. Not having enough blankets or having too many. At times, cancer is aggressively boring. Boredom punctuated by sheer terror and sweetness. I’d try to relax. I’d read or watch movies. I’d think, this isn’t so bad. And then I’d throw up three times in an hour. That kind of boredom.

I’m thirty two now and I’ve been a cancer survivor for almost two years now. What sticks in my memory about that endless parade of restless are anecdotes:

• Valerie staying up all night with me once and as the sun began to crack through the windows, whispering to me: “I finally did. I stayed up all night with you.”
• Or, sitting all night in the hospital waiting for my oncology. Asking her, “So, am I dying?” and her saying “No, you’re not going to die. Lance Armstrong had this in his brain and he lived.”
• Or my father sitting next to me in my bedroom and rubbing my back for hours because I was scrunched up in pain and couldn’t make it into the living room.

I remember these things, too.

• Endless kleenex boxes because my salivary glands went into overflux.
• A quarter moon rising over the little creek by my father’s house.
• Lying with a pillow under my left arm because I had a large cyst under my arm.
• Stuffing a pillow between my legs because I didn’t want to feel my missing testicle.
• Daniel Lanois singing quietly on the radio, “Don’t waste your breath, don’t waste your heart, don’t blister your heels walking in the dark.”
• The arms of the lone tree in the front yard weighted down with rain.
• The light from the fireplace that shone through the crack in my bedroom door.
• A poem that I meant to write, but couldn’t because my hands hurt too much.
• The thick clumps of my hair that fell on the bed, the floor, the pillows, and never came back.
• My father saying, “No choice. What else could you do? You’ve got to go straight through.”

One of the gifts that we have as survivors is storytelling. We can tell tales that make times sound bad. We can find the sweetness in the muck of it all. We make up stories when others ask us how it happened or how we crawled our way back to life.

Insomnia is bad, but there’s always something to hold onto.