Crip Time: Living with Chronic Illness and the Loss of Time

Living with chronic illness and time loss means experiencing life in fragments—days swallowed by migraine attacks, hours lost to exhaustion. ‘Crip Time’ is a personal exploration of how disability warps time, isolates, and forces us to find meaning in moments others take for granted.

The wrung-out dish rag of my brain is strewn in a crumpled pile on my nest of a bed, pulsing lightly with every inhale-exhale, a relief from the earlier throbbing. As the metallic evil of the migraine attack ebbs momentarily, I surface for hydration, maybe a few bites of food, a new set of ice packs.

Once the essentials are - painstakingly - handled, after much internal bargaining and significant build-up to even the most minor of physical movements, I become trapped in limbo, the in-between place that’s neither healthy nor so ill I cannot function at all. The migraine attack is not over yet - even if the headache itself is gone (and it’s probably not.) I still have the sore muscles, fatigue, dehydration, and a fuzzy brain to deal with. 

So I lay there, stewing in my migraine hangover, paying the price for a party I never had. Bored, but unable to do much to alleviate it. Looking at my phone could send me back toward a more substantial attack. Reading a book or doing anything else that involves complex thought is out of the question until my mind is much steadier. So I float, too brainless to think, but aware enough to be frustrated by it, as more and more of my time slips through my fingers. 

Migraine is a hungry little monster, chomping its way through hours and whole days on the calendar, sometimes two or three of them in a row. For more than a decade now, it’s been at least ten to twelve attacks a month , sometimes much worse.

During the most isolated years of the pandemic, I hit 29 migraine attacks per month , prompting me to unceremoniously quit my job. 

Foolishly, I left voluntarily, without taking a medical leave I didn’t know existed. That meant I gave up the right to unemployment insurance during what turned out to be an unprecedented level of support for that benefit in my country’s history—right when I became physically incapable of working full-time . Not that I’m bitter about it.

There’s a strange stillness to this in-between time, when I’m not yet okay, but better enough that I’m not burying my head under mounds of pillows and ice. When I’m not actively imagining what it might be like to drill a hole in my skull to see if the migraine might not be a physical thing I can remove with my own long fingernails. 

This time often ends up being at an unusual time of day or night, when others are most likely sleeping or at work, playing outside or eating a meal together. I’m always alone in my room, in the grayness of whatever natural light gets in around the shades and curtains. Since sleep is one of the only ways to truly slay a migraine attack, I often end up throwing my sleep cycle out of whack, staying up late to compensate for sleeping during the day. 

I take something for the nausea and try to force myself to eat something plain and protein-heavy, knowing that lack of food could send me back to the eager arms of yet another attack. 

Sometimes I take bad selfies to pass the time and mark the occasion. Me wearing a headache hat, a headband made of many small ice cubes, one of the few items that brings me relief. Me slouching in bed, braless and drained, unwilling and unable to stand anything other than soft, minimal clothing that doesn’t constrict my body. 

Me staring dead-eyed into the camera, maybe making a beleaguered, ironic peace sign with my fingers, like the strangest proof-of-life photo you’ve ever seen. The images are objectively strange and unattractive. My hair unwashed and aggressively askew, the angles the least flattering. But as a solo, child-free person living in a “pics or it didn’t happen” world, I know that if I don’t document my own life, no one else will. 

Taking the occasional weary selfie feels like a statement of defiance: I exist. Even while disabled, I am still here. These many hours, days, weeks, months, and now years of my life--they really did happen.

Considering that even those closest to me tend to remain largely ignorant of my condition - sometimes asking how my “nap” was after seeing me take pills, strap ice to my head, and go sleep off a migraine - it’s also a way of proving that this is really happening to me. 

See the way I have jerry-rigged this lower back ice pack to cradle my neck? This is what I do to chase relief.

See how miserable I look? I was with you that day; this is why I had to go home. See what these ice pack hats look like? This is what I was wearing during our Zoom call, not a head wrap. See how pale I am? Yes I vomited; this is why I couldn’t ear=t. 

It’s a way of rendering the invisible, visible.

Also, did I mention that I am extremely bored?

One day during this medical stupor, I sent a good friend a quick pic of my pill wheel. Even as one of the few people who it feels like I’ve actually allowed in closer to me at times, he’s surprised it’s so full. It’s bigger than the last one, but it still strains to hold all my daily meds, a small skull sticker on top marking it as mine. 

My niece gave me the sticker a few Halloweens ago, after a long deliberation as to whether I was worthy of the honor. A bit of Health Goth chic, the little skull and crossbones is my own playful “fuck you” to the whole situation. I’ll take the damn pills, go to the infinite appointments, make the endless phone calls, and accept that this is my life, but I won’t go quietly, beatifically. 

If I can’t have my old body or my time, at least I can keep my eyerolls and my sense of humor. 

I don’t often post these photos. I take maybe one for every twenty or thirty migraine attacks. It always feels like I’m being too much, making too much of what’s happening. Once a stranger tried to hit on me in response to a decidedly unattractive and clearly unwell, medical-looking migraine photo. I didn’t take or post another for a long time after that. I wonder if people think I’m making too much of it.

Paradoxically, when they finally seem to understand and act as though this is a new, big-deal situation, I wonder what they think I was talking about all those other times I canceled plans or complained about migraine. 

Did they think I was faking it, or talking it up? Do they just not really listen or care?

Now that I’ve quit my job, moved back in with my parents, and rearranged my whole life around this, why do they think I made these choices, if not because my body and the ensuing economic situation forced me to? 

Sometimes, like when I’m able to travel for a work opportunity thanks to a program from my graduate school, I wonder if people assume I’m fine or even doing well financially, rather than the truth, which is that I was a few hundred dollars away from being legally classified as my parents’ dependent on their taxes for the first time in a decade.

Every so often I have a run of good days.

Suddenly it feels like I’m playing life on easy mode, turning in work on time, with room in my day to go for walks or think about hobbies or new projects. I go to bed around midnight, like a vaguely normal human being, and sometimes I even eat three square meals a day. 

Most often, I don’t even notice it’s happening until too late. 

When I do, it’s sort of like a no-hitter in baseball: nobody say anything, nobody change anything. 

Don’t break the spell; just let me try to hold onto the magic as long as I can. I know I’m on borrowed time.