Disability through a Lens of Spirit

Debbie says:

In the spring of 2020, I had the honor to help judge the Otherwise Award. The award went to Freshwater, by Akwaeke Emezi, a stunning book about gender, multiple personality, and many other things, all from a Nigerian perspective. Emezi’s young adult book Pet also made the award honor list.

So I’ve been following their career. Their new essay in The Paris Review, My Spirit Burns through this Body” is a heartfelt and moving meditation on the author’s experience of disability:

It is storming in Dar es Salaam, thunder belting through the sky and rain slamming against the roof for over twelve hours, until the roads are drowned in swells of water and everyone is stuck in traffic. I am lying under a mosquito net, aged white tulle draped over a four-poster, as the rain seeps under the door to pool on the tile. Kathleen and I catch it with towels and listen to the wind while the right side of my torso goes into convulsions.

It starts with my arm jumping, rippling from the shoulder down to my wrist, then it escalates until I’m watching my fingers flex and claw on their own, watching my elbow slam against my side, flaring my forearm out in spasmodic jerks. My shoulder blade lifts off the mattress, the muscles seizing their own control as my sternum scrambles toward the ceiling. My head snaps so violently to the side that it feels like my neck is being torn by the force. I wouldn’t let just anyone see me like this, but Kathleen is family. She sits next to me and holds my hand and I try not to tense my body to stop the convulsions, to control this treacherous flesh. “Let it go,” she says, and my speech slurs and stutters when I try to respond, nerves glitching in my mouth.

As I’ve come to expect from their fiction, Emezi is unflinchingly honest about what’s hard, without ever forgetting what’s beautiful:

I know that my spirit burns through this body with no regard, no respect, no care. I’m trying to figure out how to become gentler with myself; I don’t want to be as cruel as the rest of this world. Slowly, as I learn to listen to it, I acknowledge that this body is disabled. This is language that makes my spirit pause rather than driving the flesh into ruin, language that gives me gentleness. Without it, I keep making my body do things it does not have the capacity for, fueled by rushes of invincibility, possibility, waves of analgesic euphoria. I thought this would make me safe—if I could write enough books, make enough money to breathe—and then, for the first time in my life, I had a home that I didn’t have to leave. …

My journey to Dar was expensive, marked with wheelchairs in every airport, flat seats on the plane, face masks and face shields, UV sanitizing lights, disinfecting wipes, exhaustion. It was the first international trip I’d been able to take in two years, ever since the spasming muscles of my neck and shoulder sent me to the emergency room, profoundly changing my relationship with my body and turning me into someone who couldn’t accept the new limits of this flesh. I swear I don’t want to be cruel. I want to see my flesh as both delicate and resilient, worthy of tenderness and restraint.

Everyone’s flesh is both delicate and resilient, worthy of tenderness and restraint. It takes a lyrical, self-aware, honest writer to see this and frame it. And they close on what may be the only kind of positive note this kind of essay can carry:

Maybe I have been running for so long that stopping feels like death. I am reaching for a languid breath, for a release of all the terrible things I’ve had to hold, for a recognition that I am already, finally safe. I want to be generous, to spoil myself beyond measure, to understand that my flesh is worthy of extravagance, even as I watch it convulse, dancing without me.

The next time my neck seizes and my muscles contract with a shocking violence, I allow it. For once, I can see the beauty in having flesh that is as loud as my spirit. It insists on care, it is just as stubborn as I am, just as brilliant, and I forgive it for being like this, disabled and furiously alive.

Read the whole essay, and then treat yourself and read Pet, Freshwater, and The Death of Vivek Oji. None of them (except perhaps Pet) are most people’s kind of pandemic reading, but they all are like this essay: telling whole ugly truths and seeing beauty slantwise within those truths.


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