To be disabled
Recovery is long and difficult. What is life in process?
To be disabled, for me, is to be haunted. Not literally, no, though lately I have wondered if someday I will come to that point, when spirits haunt me, visibly, audibly, palpably, imposing their presence from the nothing.
I am haunted by the specter of mad genius, a stupid little myth that won’t leave me, that polarizes the prospects of my life into tragedy or triumph. Some people grow up labeled as “gay,” whether they actually are or not. I was the precious problem child, granted no labels except “gifted,” “sensitive,” “intense”…different. Quite naturally, when I first encountered the mad genius concept in my obsessive psychology reading as a middle schooler, I identified with it.
Then, its paradox was enticing. Now, it frightens, like a spirit from the nothing.
To be disabled, for me, is to be hypervigilant, especially in public. Always keeping tabs with your internal state, trying to avoid potential breakdowns or shutdowns. Perhaps you feel a little shaky? Sit down, take a breath. Hopefully you get up again. If not, there’s trouble. You look around yourself, seeing if there’s any people around, any security around. You do not want to catch the eye of security.
To be disabled and young-looking is to not be trusted in your own judgment about yourself. People’s first question when trying to help me: “Where are your parents?” Their second impulse: to call the police or 911. Desperately I try to explain that I am experiencing a psychological issue, not a medical issue, but also that the psychological issue is not as severe as it looks. Really I am pleading to them, “I’m an adult, I know myself, please trust me!”
The only person I fully trust is myself, and yet that trust has been badly shaken.
To be disabled, for me, is to revise yourself again and again. I had ambitions when I graduated from college half a year ago, and now they must be set aside to give self-care the foreground. Some people have the privilege to do what they love. Increasingly, I can only do what cares for me.
I never dreamt of marriage, but recently I have wondered if I should “marry up” after all, just as a Chinese “daughter” should, simply so that I can benefit from my wealthy spouse’s better health insurance. Alternatively, I could live in a household of neuroqueer disabled people who mutually care for one another, collectively taking charge of household chores to allow people to rest when they need it. I need care — somehow.
If only I were just bipolar. Conveniently my meds keep those symptoms mostly at bay. But then there are autism and ADHD, which I strongly believe I have and am getting evaluated for. There is the OCD that has recently cropped up regarding a fear of developing psychosis, which gets terribly confusing and ironic, for whether or not I am actually developing psychosis, I am driving myself mad. There is the complex trauma that I have worked through a lot in therapy but can still be heavy chains to carry. And as I learn more about how my bodymind works, through the lenses of these labels as well as independently of them, I am dizzy with how much I’ve changed — and how much I have always been.
I fear what changes may be ahead of me. But, maybe, they will only bring me closer to who I am.
Never has it been more salient to me that I am disabled. It’s not about any one label or condition, but rather the combination of all of them, such that when one wave settles, a different one rises and rages. And the implications of disability, and the uncertainties of it, are weighing on me heavily.
There is something in me that wants to persist, but I do not yet see the way. Some have before them a paved road towards what is commonly called success, while others must feel their way through the brambles towards spring-songs of their own. The forest pricks me, and I bleed all over. I lick my lacerated arms and legs. I taste good alive.
I was not made for this world. Yet I don’t think anyone truly was. We make ourselves. We did not consent to life, but we consent to living in every moment.
My yes is soft, like a feather taking its first breath in flight.
The fourth section of this essay was first posted on my Facebook.