The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19.
I woke a March ago to the cruel, familiar feeling of unsubstantiated terror. Anxieties of tenuous relation folded in on one another until I felt I was carrying a cardboard box of feeling twice my size on my back, and the box was covered in a near-illegible collection of narratives meant to put that fear to work.
This is the box of feelings that I carry day by day, the box I can’t surely set down even in sleep. COVID-19 fit easily in that box, with room to spare. With each sunrise I watched more peoples’ invisible boxes grow clear, heavy, and full. For now we walk together, but for me, crushing anxiety is far from new.
At the beginning of this, I called home to hear that my parents had established a small reserve supply of food and toiletries; they were keeping close watch of COVID updates largely restricted to Europe and the west coast. Just in case. We discussed my spring break plans: I was eager to get home, to have a break from campus. They looked forward to seeing me.
Several days later, New England colleges began closing, folding like dominoes. My – and the rest of this year’s class of 2020 – worst fears were confirmed by the devastating news that, until further notice, large-group meetings were cancelled, events postponed “indefinitely.” No senior ball, no end-of-year celebrations. No graduation. I walked half-lucid across campus to a chorus of panicked sobs, to chairs and desk legs screeching as students frantically packed by the administration-imposed deadline, initially presented without indication of possibilities for assistance. We were consumed by such collective fear, not only existential, but also personal.
In the span of a few days, we turned from social animals to deer frightened in the face of our own disastrous power. We asked: What if I bring coronavirus to my home? What if I am, by extension, responsible for the deaths of innocent others? What if I am responsible for the deaths of those I love; what if my selfish or unscrupulous tendencies destroy my life?
I’ve been asking these questions of myself since childhood. I’ve lived my life with a brain whose weirdness, in the wake of a pandemic, has gained (limited) legitimacy. COVID-19 normalized the responses I associate with my Obsessive-Compulsive Disorder (OCD) – not only the hand-washing or fears of contamination, but also the loud voice on constant loop in my skull that renders every possible disaster probable, and turns unavoidable catastrophes into mere results of my own carelessness. At its core, OCD is about concern and scrupulousness, about forces of fear that only irrational and time-consuming rituals can hope to mitigate. It is about washing your hands so that your loved ones don’t die.
I do not mean to say that OCD is only about cleanliness. That said, the quintessential obsessive-compulsive person is essentially one who follows best-practice in a pandemic: They stay home, hand-wash, don’t shake hands or hug, and sanitize their living quarters constantly. They presume, of necessity, that everyone around them is dirty and/or ill, that they themself are a vector for disease, and that they should thus avoid the germ-generating social milieu as much as possible. Rather than reduce these similarities to comparisons of obsessive hygiene, I want to point out the similarities between the lock-checker, the hand-washer, the hoarder, and more: all perform seemingly futile tasks out of a fear of death, or the unknown. We may even acknowledge that no behavior by itself will truly stop the doom we anticipate – those extra rolls of toilet paper will run out; even the most sanitized household is not entirely immune to a virus – yet we continue to do rituals that provide us comfort in the face of uncertainty and loss of control.
When the intrusive, catastrophizing thoughts of “I and everyone I love will surely die” enter our heads, they are accompanied by an “unless,” giving us a way to make sense of the abject fear with a purchase or pump of Purell. We hear about fears of shortages and so we respond by causing more, caught in an endless feedback loop in which our responses reproduce a problematic stimulus, catastrophe, a cycle without end.
I understand these fears intimately. I live them. I’ve long experienced panic comparable to the panic of the toilet-paper hoarder and the Purell-over-user, a panic that was until today blamed on my “defective” brain. I contended with my feelings nearly-alone, with none of the social grace afforded to those consumed by COVID-panic. Even as we count and wash our hands, even as we sanitize every surface as we leave it, I still feel like an outsider for my other, non-sanctioned obsessions and compulsions, which do not magically dissipate in the face of a pandemic. Just as clearly as we have seen the destabilization of the “rational/irrational” binary, we have seen another binary stay intact: while COVID-related obsessions and compulsions produce a permissible madness, others stay taboo as ever.
COVID has made parts of my weird brain en vogue and even prerequisites to good citizenship: today we worry whether a hand on our parents’ doorknob spells their doom. While I am glad, if nothing else, that sane people can access an understanding of my lived reality, I fear that this taste of terror will do nothing to facilitate understanding of quotidian madnesses, madnesses that will live on long after social restrictions have been lifted. After this mass catastrophe has abated, I anticipate remaining in the same space of isolation I have occupied since I was small. That is, I envision myself and my strange habits and useless worries receiving the same patronizing treatment they always have. And I envision the bulk of this patronization to continue to come from doctors themselves –– the very authorities whose declaration of pandemic (necessarily) inaugurated a compulsion-cultivating army of hand-washers and mask-wearers.
In these uncertain times, norms of rationality and irrationality have shattered. “Sane” and “insane” have proven to be malleable descriptors which rely on ever-changing social standards, not diagnosable truths. Still, I wonder what will become of us once this moment of collective madness is complete.
In even-numbered intervals I check the door-locks. I pace my room. I am not allowed to sit on my bed in my street clothes, nor touch my sheets without first having showered. I do this to avoid disaster, and it is as if the world has finally caught up with me. I check and check again. I will continue. And will you stand beside me? And do I get your grace?