The evening after the doctor at the chronic illness clinic told me that my convulsions, my fatigue, my mosaic of pains, were the result of repeated mold exposures and a genetic sensitivity to such exposures known as CIRS, I ordered a hamburger slathered in raw mushrooms, something I’d never before eaten, the perhaps obvious fungal connection invisible to me as I pressed menu options on my phone, as I ate and puzzled over the slippery sensation and taste of dirt-memory and whether or not I enjoyed either of those things.
I spent all night vomiting my guts out. And as I often did in my lowest, most pained moments—whether vomiting for hours or seizing dramatically or biking sixteen miles roundtrip on the side of the highway with untrained muscles, brushed by death-carrying eighteen-wheelers—I felt sanctified. My cheek pressed to a cool tile floor, in my mind’s eye, a fluorescent halo hovered above my oceanically heaving head
Five and a half years later, I woke at four in the morning to vomit. I woke again at five in the morning to vomit. Dark clumps that tasted of last night’s fried oysters and burned and scraped my throat. This time, there was no imagined halo. Similarly to how I had lost my grip on my ability to make my suffering funny, a slapstick endeavor, the ability to alchemize it into martyrdom set to a chorus of organs and angels had faded too. Dust to dust.
Now when I convulse, I allow myself to whimper, to cry. When I roll my eyes at the painful tedium, the motion is accompanied by no wry joke. Rather, the unadorned: “This hurts so much.” And I do convulse, with regularity, ever since we moved into our new apartment. And I do suspect I know why, have spied with my little eye a culprit.
To make room for constructing our Ikea bedframe, dark wood with four rolling drawers big enough to hold four fat housecats, we made to move our mattress just temporarily from where it was living on the floor. But when we heaved it onto its side, mapped across the bottom was an alien continent of mold, the size of my torso at least. Spores dark as regurgitated fried oysters. The hell of my body froze over, standing there, seeing the enemy on which I’d laid my head every night for over a month.
My boyfriend grabbed scissors to cut the infected layer free, but exposing the mattress’ innards released a ghostly punch of nauseating rot-smell. We both staggered. “Okay, no, nope,” Sam said with a frantic air of attempting to stuff the odor back into the mattress, and I said, “It’s in there deep,” deep as it was in me. The whole affair was poisoned, soft and sickly green tendrils winding their way around each fiber: of foam, of nerve.
We trashed the mattress of course. SwifferJetted the floor on which its infestation had festered. Installed new filters in my air purifier and full-blasted its cleaning power at the bedroom air. But we could not SwifferJet my insides. Could not run me through a charcoal filter. And so I sat on the living room rug and stared at the solidity of the nothingness ahead of me. Felt a hardness crystallizing in my chest. I think of prophet Prior Walter in Angels in America, upon revealing his K.S. diagnosis to his boyfriend, saying, “No wall like the wall of hard scientific fact,” but I don’t have that, now do I?
Chronic Inflammatory Response Syndrome is largely regarded as pseudoscience—charitably—or, less charitably, bullshit or a scam. The specialist I saw in the years between the mushrooms and the oysters, when I accidentally inflamed my insides by allowing mold to grow in the baby deer bones I’d brought back from camping upstate, said, “Most of the medical community doesn’t believe it exists,” and I thought then of Captain America: The Winter Soldier:
Most of the intelligence community doesn’t believe it exists. The ones that do call it the Winter Moldier.
The perhaps most common prescription for someone with my symptoms is not the off-label use of cholesterol-lowering drugs that has saved my body repeatedly, but a combination of talk therapy and CBT. Pseudoseizures are believed by many to always, always originate in the mind. But I know better than to believe in such clean dualism. After all, I live with C-PTSD, which, as my therapist puts it, should rightfully be considered an autoimmune disorder in addition to a mental illness.
It makes me feel crazy, how obvious and yet unsung a view it is, that if mental and emotional stressors can lead to a body wracked with shakes and aches, then superficially unrelated physical stressors like prolonged mold inhalation can as well. Wham! Bang your head on that, all day long, enmeshed in the hard walls of scientific “fact.” Struggling to break free of their domination. A wriggling fish with its neck caught in a six pack’s plastic skeleton.
I am very lucky, at least, to currently have a primary care physician who, although he admitted he had never heard of cholestyramine powder treating mold exposure and subsequent pseudoseizures, prescribed it regardless, citing that it was low-risk; there was minimal harm in humoring my experimental desires. I went into the appointment where I requested the powder terrified, flirting with ditching the doctor before I could be left in a ditch, after having spoken a year ago to a neurologist who literally rolled his eyes as he told me, “Well your seizures obviously aren’t caused by mold,” and then ran down the litany of neurological tests he’d have to run on me, which I’d already previously undergone. Again and again into the MRI tube. Again and again beneath the sensors of the EEG.
We have a new mattress on a new bedframe in a new apartment with its deeply peach office walls, its pale mint bedroom walls, the kitchen clock who sings a different birdcall every hour, richly purified air scented with strawberries and cream incense. We only do not have a new body in which I can swim free, one perhaps less thoroughly tangled up with the medical-industrial complex. A body not so indelibly reliant on the whims of doctors, of popular opinion, of pharmacists, of the movements of medical supply chains. Such is being a chronically ill, mentally ill transsexual. Such is the dirt in which I am planted, the mattress in which my spores have taken root.
As I write this, my boyfriend slowly ceases hugging my thigh, saying, “I return your leg to you,” but these days I struggle to fully understand it as my leg in the first place. Not when my autonomy over its well-being is so out of my hands. Things to focus on for antidotes: the hair there, dark and curling, that I did not have before I began injecting hormones each week; the needle I’ll jab deep into muscle later today and the cherry-print pink bandage I’ll smooth over the kiss of a wound; and the tattoo, close to my kneecap, of three floating, oval windows; through the middle window, a sunset or sunrise haloing the earth, a little black cat, headed toward the horizon, that solid division, walking and walking to seek the place where there are no such clear lines.