You go to the doctor and hope rises like a balloon. Maybe an answer, a prognosis, a treatment. Something to work with. But instead, only more tests, more theories, more maybes, more versions of try this.
Hope floats away like a balloon.
I call the time with the balloon string in hand, “the white room.” Everything is slow in the white room. You are in a folding chair at the DMV and the man next to you takes a pineapple from his bag and peels it with a pocketknife. You are on a layover in St. Louis, drinking miso soup out of a disposable bowl. People sleep around you, heads on suitcases, phones in hand. Planes take off behind them.
In waiting rooms, in doctors’ offices, there might be a disaster just around the bend but here and now everyone speaks in measured tones. Everyone is washed and shaven. There is the familiar click of heels and lemon scent of disinfectant. There is nowhere else to be and nothing else to do.
And then you go home. At home, there are no women in designer shoes and lab coats, no middle-aged men with soft eyes and wedding rings. There is what there always is: the sink stained black from mold that predates you and will not yield to repeated bleaching; the emails you won’t open; the calls you won’t return; your savings account emptying itself like sand through the milky plastic of a board game timer. There is your neck, aching as it holds your head up another day. There is the nerve pain that strikes down your arms like cruel lightning, and your hands complaining as you brush, tie, type, button, unbutton.
The year I started graduate school in California, my hands kept falling asleep. I went to one doctor, and then to other doctors, and finally to a hand surgeon. They all told me it was compression of the median nerve—carpal tunnel syndrome—and it could be fixed with a simple surgery. They said, “You can wait until the school year is over, and do it over the summer.” They said, “Ten days of recovery, and you’ll be back at the lab bench.”
I kept working. But when summer came, it turned out the diagnosis was wrong. The problem was compression of my ulnar and radial nerves. The problem was tendon degeneration and muscle damage from repetitive stress. The surgeries required were not simple. Healing would not be quick or complete.
That fall, I kept trying to do things like a madwoman: unpack in my new Berkeley apartment, boil water for pasta, carry a box of books, twist open a jar, turn the handle of heavy door. Healing, I read, depends on rest. Do as little as possible. There was an injunction specifically against perilous lids and knobs. I felt this to be true; I mean, literally, that I could feel it. The price I paid for opening the window, for the fresh air scattering receipts across my coffee table, was not only a searing pain through my arms, but also more time.
The slow way is the fast way, I wrote on Post-its that I stuck around my apartment. I put down my pen. I put down my pipette, and withdrew from my graduate program. I put down the books I couldn’t hold—or, couldn’t hold without causing more pain and costing me more time. I bought an oversized rollerball mouse and put it under my desk and used my feet to maneuver around my computer until I injured them, too. Lunch was oatmeal microwaved in a paper bowl to spare me needing to wash dishes; dinner was lettuce, corn tortillas, a plastic tub of grocery store hummus, no plate necessary. My brain bargained compulsively with a god I don’t believe in: Would I trade a leg to use my arms freely, again? One leg, or both? Above or below the knee? I imagined walking up the stairs on a prosthesis, the pressure of plastic on stump. I imagined telling new lovers and whether their faces would stay warm or crumple like wrapping paper. I wondered if I’d be able to hike or run again. What else would I trade to regain my former abilities? How many years of life? How many years of beauty? I sold my car to pay the rent.
I remembered the words of my ancestors, and put them around my apartment, too. Not the redheaded men on my father’s side, who fought for the British and then settled in Canada when the new Americans won; not the Jews on my mother’s side, who fled Romania in time and ran delis in Chicago. I don’t know what they said. I mean the ancestors I found in books, my poets and writers. I am still, always, thinking of Marie Howe, and what her brother said when he lost his sight, how he kept going: Here, sit closer to the bed / so I can see you. I think of her friend, Jason Shinder, dead at fifty-two from blood cancers: I need to grind the lead of my disappointment into a smaller and smaller complaint. I put Jane Kenyon’s words on an index card, and taped the card to my bathroom mirror: How much better it is to carry wood to the fire than to moan about your life. Audre Lorde’s words have been with me for more than a decade now, equal parts bolster and mandate: We can learn to work and speak when we are afraid in the same way we have learned to work and speak when we are tired.
I hated, but not in the way you might think. It was cool hatred, hatred without the feeling of hatred, hatred as knowledge. I hated people who did yoga. I hated people who carried a book with them to read on the train, or in line. I hated people holding the handles of green plastic grocery baskets, the cables of their wrist flexors pressing through the skin. I hated people who didn’t have to worry, Who will marry me now, like this? I hated the young man I saw on the corner of Telegraph Avenue who jumped, grabbed a tree branch, and did a pull-up just for the fun of it.
I tried to remember gratitude as an antidote to the hatred strobing in my mind, but my ability to feel gratitude had broken and hasn’t repaired itself; I don’t know if it ever will. I tried to pay attention to the world. I smelled the outside air. I watched the sunset over San Francisco Bay. I lured a squirrel towards me with a walnut and admired the red mohawk behind each of his ears.
This attentiveness was no match for the bursts of rage, temper tantrums without kicking feet or pounding fists but contained inside my skull,. Maybe I should call them brain storms. I’m almost a Buddhist, at least as much as I am a Jew, so I knew what to do: just sit with the anger. Yes, I told myself, brain burning, it’s frustrating. Yes, I told myself, sitting in frustration that itched like pox, anyone would be frustrated.
In March, just before my first surgery, I told the man I’d been seeing that I pray sometimes, too. He was above me on the couch. We were clothed, but I had pulled his blue and white prayer beads out from under his shirt. “Short prayers,” I told him, “Just one word, actually.”
“Help?” he asked.
“Please,” I said.
I imagined him rocking, davening, the beads moving through his hands. My prayers looked nothing like his. Just a word said against a window. Just my despair, painted in six letters.
“I should quit school and take care of you,” he said. I knew what this was. He was facing me, expression earnest, but his eyes had rolled backwards in his skull, gazing inward. “Don’t use me as an excuse to make your decision about school,” I told him. “Make your own decision.” He came by once after my first surgery, and then he was gone. I don’t know where he went. I don’t know anything.
After surgery, I go to bed early and wake up early. I have never been so well rested. I sat on my couch for a while yesterday, watching the thin blue cotton plaid of my shirt vibrate with each heartbeat. I spend a lot of time looking out of my south-facing window at the offices across the street. I spend a lot of time lying in bed, looking at the cracks in my ceiling, trying to determine which Midwestern states they resemble. I listen to the lull of traffic, birdsong, the occasional voices of pedestrians. I hear cops hassling a woman on the street below. I run baths with Comet-green Epsom salts, and prop my arm on the ledge of the tub so my bandages don’t get wet.
I call this new way of living, these unmeasured days, “crip time.”
I don’t know the names of the birds that sing here in the dark of morning. It is April, and I watch the rain outside my window. My elbow froze straight after the surgery. Three times a day I put my arm in a metal splint and turn the knob against the frozen joint to make it bend again. Like Marie Howe wrote, I force myself to lean into it / to settle down.
It is May, and I write SLOW across my mirror in block letters. Outside, there are daffodils, crocuses, irises, pansies. It is June, and there is hyacinth, said to look like the hair of Odysseus. It is July, and I get surgery on my other arm. I don’t know the name of the electric violet petals falling from trees onto the gray sidewalk. I used to see them by the house on the corner when I walked to Berkeley Bowl, before the surgeries, before I had to stay in and rest, one arm and then the other elevated above my head. There are so many flowers native to California whose names I don’t know.
You might say crip time is tedious. You might say it is long. You might say that the days stretch out like paraffin or like taffy, that you have been inside of a day and have felt your soul pass through each second of it.
Crip time is slow time.
Last week, without much frustration, I waited for two trains to pass and then rode forty minutes into the city. The EZ-wash seats and the long scream of the train under the bay are another kind of white room. I looked at the faces and backs of heads, lined up like eggs in a carton. I tried to see each one as beautiful, my favorite public transit meditation. And then I waited as three buses came and went, until one was empty enough for me to ride—I needed to take a seat without risking the ire of a bus driver again. I didn’t want glares from passengers with knitted foreheads and knitting needles. I can’t hold the pole, but they don’t see this. They only see my smooth, pink face; my unlined skin disappears my bandages.
I rode the 38L down Geary Street. Running is good for your brain, they say, and so is trampolining. It is not the cardiovascular effects, but the jostling that seems to encourage the growth of new neurons. So, I laid my head against the plastic pane, and let it rattle my brains and teeth for the half-hour ride: neurogenesis.
I got off by the KFC, and then I was in the surgeon’s waiting room across the street, yet another white room, waiting for the occupational therapist to fix my splint. They were out of a certain kind of dressing that the patient ahead of me wanted. They told her she would have to go to the other office a couple miles away for the better dressing. “This is unacceptable,” she said, her voice rising and tightening, helium-high. She was fitting the appointment in between business calls, she said. She had to go, she had to get back.
She had probably waited forty-five minutes in the waiting room for a five-minute check-in with the surgeon, like I had. I recognized her desperate, panicked tone, the sound of fast time touching crip time like flint to steel. It was the tone I’d heard in my own voice so many times before, like when the quack specialist at the school’s clinic handled me so hard he left bruises. Or when a physical therapist told me that it was in my head because, “You can’t have pain for this long.” When another advised me to “get a sugar daddy” so I could pay for adjunct treatments. When I realized the first hand surgeon had misdiagnosed me, and would have cut my arms the wrong way if I’d let him.
Mostly I say: keep going. Keep parceling your pills into a weekly minder. Keep stretching your hurt body with religious regularity. Keep being a bad patient. A bad patient, like a bad woman, is the one who reads too much, and asks too many questions.
Mostly I say: give up. This is how to be sick, or hurt: give up on fast time. You can’t hurry your body, or your doctors, or the Muni jerking on an electric artery through the Tenderloin. Disappoint yourself. Disappoint everyone. Put your calendar into the mouth of a fire: this is the fastest way to heal. This is what you need to do if you don’t heal.
Fall back into the river; float here, in crip time.
Author’s note: After publishing this piece, it was brought to my attention that the term “crip time” has been previously used in disability studies scholarly work. I was not aware of that when I wrote this, but in retrospect, it is unsurprising that people would independently come up with the same term to describe experiences around time and disability, convalescence, and/or chronic illness. If you are interested in learning more about this term, there are many resources available. Here are just a few to get started:
Feminist, Queer, Crip by Alison Kafer
“Crip Time” by Petra Kuppers
“Cripping Time in the College Composition Classroom” by Tara Wood
“Six Ways of Looking at Crip Time” by Ellen Samuels
Rumpus original art by Alison Stine.