At 3 a.m. I woke up, overheated, to find half of my duvet on the ground and my face tight with dehydration.
Sometime earlier in the night I had drifted off to sleep, hugging my knees to my chest and waiting for warmth to slowly spread to my lower extremities. I have poor circulation and thin blood vessels, even experienced nurses couldn’t draw my blood on the first try.
I hoisted my duvet into the air and let it fall back over my body, flushing out the hot air and returning me to room temperature.
The world outside is dark. I should go back to sleep, but my limbs are already too light and my mind has started racing from thought to thought. I toss and turn in vain for two more hours before giving up on sleep.
No one rises at 5 a.m. without a groan-worthy reason. Here’s mine: prednisone makes me unable to fucking sleep.
It’s been almost four years since my immune system attacked itself and medical staff hurried to figure out what was wrong with me before I pissed out too many dead platelets and croaked. That’s the most exciting part of the story, but one I can’t tell with any reliable detail because I was barely conscious for the first few days.
So I’ll tell a different one, the part I was — am — conscious for. Conscious for too damn much of it.
After realizing I was going to live after all, and heal from all of it, what was there to do but grovel at the marvels of modern medicine? I worked hard to be agreeable, because I had just let out the breath I was holding in all that time.
“Eventually you’ll walk again, and you’ll speak again, and you’ll look like how you did before,” my mother whispered, pressing our foreheads together in the hospital bed.
The lights dimmed for the evening and it was quiet. In the daytime, she set her jaw as she poured the little packets of pills into my palm and looked away as nurses came to flush out my IV catheter and replace one sack of drip fluid with another.
I made it to high school graduation. I made it to university. I frequented hospitals and took handfuls of pills every day. I began my twenties feeling unremarkable. I stopped groveling.
How do I describe the drugs working through my body? Imagine thousands upon thousands of milligrams of molecules coursing through your bloodstream, taking with them clumps of hair from the scalp, collagen under the skin, leaving bruises and stretch marks in their wake.
Aside from other pills with friendlier side effects, there is the anticoagulant that makes my periods last forever, the hydroxychloroquine that worsens my myopia, the metformin that makes me hungry and dizzy and lethargic all the time. And finally, the prednisone that makes me sad and mad and ache and itch and bruise and twitch and shed and bloat, that makes me wade through waves of fatigue at inopportune times during the day and simmer in restlessness during the night.
I don’t tell anyone about this. Not because of some ingratiating obligation to shield those I love, but simply because it’s easier to carry on this way.
Because the alternative? Here’s how I’d imagine the alternative:
“Hey,” I’d say. “This is the thing that is hurting me.”
And my loved one, because they care for me, would furrow their brows and implore me to tell them what I mean.
“This,” I’d say, putting down whatever I was holding, and gesticulating with both my hands. “And this. And this.”
And like a grim magic trick, I’d pull the discomforts like mottled flightless birds from inside my chest. I’d give them to my loved one before we continue on our separate ways. Before the sun sets, more mottled birds would find me and fill the spaces where the previous ones had been given away.
And out there, my loved one would still hold onto the birds I gave them, unsure of how to care for them because they’re wild things that scratch and squawk. My birds have doubled in number and neither my loved one nor myself are walking any lighter.
How ineffectual!
“You are healing,” the doctor said, pointing to an MRI scan of my brain — new blood vessels spread out from the blockage that started it all, four years ago. The body found a way.
I let out a small smile and looked down at my palms, the thin skin revealing a web of blood vessels. They are too obvious and everywhere on my body, an unfortunate aesthetic — but they are also in my brain and doing something remarkable there.
I make peace with these intensified symptoms, for they are as much a process as a product.
Sometimes I twitch so hard I take my arms off the desk in class so the person sitting next to me doesn’t feel the vibrations emanating from me and get concerned.
Sometimes I spend hours upon exhausting hours lying awake in bed.
It’s alright. Nighttime is gentle. I match its quiet with my own.
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