The time frame of chronic illness; or, what is crip time

What is time to a sick person?

Isaac Newton is the most famous philosopher and scientist who subscribed to the idea of absolute time, where time is a part of the structure of the universe and passes uniformly regardless of what is going on. Other philosophers, such as Immanuel Kant and Gottfried Leibnez, emphasize that time is not fixed because it is a construct that we have created to help make sense of the world.

Nothing quite illustrates the tensions in how we understand time as having a broken body.

My time as a living human being is fixed. I will age, I will grow old, I will die. Yet as I’m alive, the time frame in which I live differs from most other people. I’m not able to do most things that “people my age” can do. The few things I can do, I’m not able to do them as fast or for as long as “people my age” usually do. I’m not able to push myself hard on my career trajectory like “people my age” are supposed to do. What progress I do make occurs at a different pace; that which is measured in weeks or months for “people my age” becomes years for me. I am painfully aware of how my peers are leaving me behind as their time speeds past my time.

Slow and steady wins the race. I am reminded of the irony of this when each time I try to live in time with “people my age”, I end up bedridden. So I plod along using baby steps. (Also called pacing, according to the exercise physiologist who I have been seeing to learn how to manage the symptoms of my chronic illness). What I am able to do is pace myself so that I do one thing a day: a list of chores, meetings, and events that “people my age” finish within a day takes me a week. No matter how slow and steady I take it, others zip past and continue on. A pace as slow and steady as mine wins little in the race of life. People often talk about “losing years of their life” to chronic illness.

But that is not to say that in my time any less change happens; if anything, the number of changes you notice increases when the time frame is drawn out. Like watching a video in slow motion, you are able to perceive detailed shifts that go unnoticed by others. In the last two years, I’ve gone from being physically active to being sedentary, and this change has made me more aware of my body compared to my peers. I’ve watched friends fall away little by little; though it may seem to them that I disappeared all of a sudden, I am acutely aware of how our conversations petered out. Each time I go to the doctor’s office, I can tell which magazines are new and which were there during my previous visit a couple months ago. At a societal level, you become painfully acquainted with how a capitalist society is built to exclude.

Able-bodied people rarely understand how fixed time can be relative. While my peers are measuring time in terms like one year to promotion, going out on Friday night until two in the morning, and dating someone from Tinder for three months, I have my own ways of measuring time. It’s been twenty years since my symptoms have carved a space in the back of my mind, thirteen years since some of them became an issue, three years since the rest of them began bleeding into the forefront of my consciousness, and one year since I could no longer ignore them. I take painkillers four times every twenty four hours to help make the pain bearable (not until there is no pain, is that even possible?). Starting three years ago I’ve been seen medical professionals at least once every other month, if not every other week. I’ve been going to the exercise physiologist for the past seven months and properly pacing myself for six, and because of this it has been six months since the last time I was bedridden from some combination of mind-numbing pain, fatigue, and depression. I arrive fifteen to thirty minutes early for most medical appointments. I rarely go to events that end past nine in the evening. While I hide most ways I tell time, the last one is one my friends know all too well. They used to joke that I have the habits of a grandma, but those jokes have dropped off as I’ve stopped laughing to them.

I’ve been told that I’m “too young to be this disabled” and that someone my age should be able to recover to rejoin “normal” life that goes at a “normal” pace. But some bodies are broken, and it’s not that I can’t do things. I just can’t do them in the time society expects them to be done. My body cares little about the time I’m supposed to be on; my body will take the time that it needs. As Alison Kafer notes in Feminist, Queer, Crip, “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds” (27).

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