Language of the Ill: Observations on Disability in a Time of Pandemic

By Deonte Osayande

I am no longer as passionate about performing poetry as I am writing it. I realize that as I sit in my house, having not performed a poem in months. It brings me anxiety, and although it's relieved moments later, the world of poetry slam has now become too much for me where it was once everything. I don't even remember any of my poems. And, strangely, I'm not entirely sad about this new development.

I never considered myself as part of the land of the healthy. Even before COVID19 I knew I had narcolepsy and depression. These were accepted facts that I recognized within myself. I thought I knew the language of the ill, how it strikes us down when we least expect it, how it speaks in a particular fashion. I had long felt the effects of being chronically sick before the global pandemic. I knew how health, private and public, could (and does) change instantly. Like realizations about poetry preferences, things that are permanent never really are.

I sit in an empty classroom at the end of the semester, a semester cut short by social distancing. I find myself facing one of my greatest fears. It’s not some sort of apparition, or creepy ghoul, but it is a simple reality for many of us. It is the spectre of MS, otherwise known as multiple sclerosis. It first appeared in October of this past year, after a normal weekend. I was running to work, but then oddly enough my balance appeared off. I used to run track so it was a strange sensation having steps become more and more wobbly as I moved forward. At first I thought it was vertigo, so I went to work, taught my classes, and waited for it to go away. The thing is, it never did.

In the coming weeks I would be fitted for glasses and given a prescription for dizziness. I was never dizzy and I hadn’t had a pair of glasses since I was a child. Now, it seems that I’ve got a case of severe nearsightedness. Then I started noticing my forgetfulness and how when trying to remember the poems I wrote for my live performances they were all lost to the thick layers of brain fog. I couldn't recall more than the first few lines, and that's when I knew something was wrong. I consulted the one person I know who had fought MS and won, my mom (biologically my grandmother).

I confessed to her about my struggles and she was one of the first people to suggest it might be MS. My father also has it, but it has completely debilitated his life. Where there once was a funny, outgoing man, now he stays in the confines of his room, often just to his bed, an almost complete exercise of social distancing. He occasionally comes out in his wheelchair, like he did to meet my wife, but his speech is barely above a whisper. His words are hardly audible. I remember he was saying something to us at the time, but I couldn't make it out. I just tried to guess what he wanted, and most of the time through piecing together this dialect of the ill I was able to. For the instances where I wasn't able, where fluency stopped, I'd have to ask his wife or my younger siblings to translate what his illness had turned his language into. Now more than ever I could see that he spoke the language of the ill.

As the years have gone by he’s gotten thinner and thinner and thinner to the point I’m afraid every time I get a phone call from his wife, the news will be he has passed away.

Multiple Sclerosis is an ailment that progressively eats away at the nerve cells in your brain and spinal cord.

Think about that.

It starts in the place that controls thought and action. The center of our being. Then it radiates outwards, hitting all of the other parts of ourselves as it goes. It can cause numbness, impaired speech, blurred vision, and severe fatigue. And those are just the physical impairments. Eventually it starts to affect our social being too. How we work, how we play, how we relate to the world in our bodies.

I have known these things since I was a child watching family members fight. As intimately as I knew it, though, I never thought I would have to face it. But that is often the way with disease. Always a risk, but typically something happening over there, to others, separated from ourselves by oceans and bodies and lived experiences. Yet that assumption is no vaccine, and when I saw a neurologist after symptoms persisted he confirmed that it was one of two things— either it was MS (that skeleton stumbling in my closet) or it is just a pinched nerve (oh, to hope). I wanted, of course, for it to be a pinched nerve. But what I feared was that my genetics were finally catching up with me. Like a rival in a track meet, or a competing poet in a slam, slowly gaining, gaining while I was fumbling more and more.

I tried to run from it for so long, but maybe that was what my problem. I spent so much of my life running from my genetics. I was so busy blazing my own trail that I neglected the roles that the past have to play within all of us. My biological father played football in college and I didn’t consider that in my athletic background, rather I ran track and field, focused on the type of athlete I wanted to be. My mother (grandmother) was an English teacher but I didn’t think about how that went into my background as a writer or as an English professor. We all come from somewhere, and maybe it's important to acknowledge where that is to see where we're headed.

They've now tested me several times and everything has come back negative. I take an MRI on a Thursday, and the neurologist called me on that Friday and confirmed it, the shadow that followed my whole life has finally caught me.

I have MS. No denying it.

There's inflammation on my brain and spine and they just need to determine what kind and to what severity my condition is. I'm not afraid, not like I was before. I knew fairly quickly what it was, and the neurologist complimented me on coming in because it might be early enough to be treated. It any case, it will be difficult. At least in knowing what you're up against you can take progressive action to fight it. I'm not going to quit, as I haven't with any of my other health issues,

I'm just at the starting line.

Feet in the blocks.

The gun is about to go off.

But then we shift gears.

Let's begin with the date and the time, as I write this it is currently late March 2020. The pandemic filling our screens and flying through the air on conversation started in Wuhan, China around November of last year. They are calling it the “novel” coronavirus. The epidemic has spread worldwide to the point that every nation is dealing with numerous fatal cases of it. The United States has barred travel from all of Europe, and conversely Canada, (the nation bordering my city) has made travel to and from the U.S. illegal. Flights are really cheap nationwide but we're all advised to quarantine ourselves in our own homes until further notice. Although many people are disobeying that order, I am not.

This is an epidemic on a scale that modern society hasn't seen for quite some time. And I'm not just talking about the spread of an infectious disease. A few days after the New Year started the President of the United States launched an airstrike on an Iranian diplomat and killed him. There are even conspiracy theories that the US engineered this virus as a weapon to be unleashed on rival nations. This idea comes after Trump has suggested China is responsible for engineering the virus.

It's just a war of words. The words are there just to distract us from the fact we are living in an uncertain present, with an uncertain future, with leaders who can’t agree on what has happened in the past. The war of words is meant to distract us from the fact that a virus unleashed is not in the realm of science fiction, but a reality in a world where diplomats are killed, where racist reality TV stars reign as temporary kings, where reality succumbs to the viral sting of Twitter.

This all leaves us in quarantined isolation in a country with a leader I, and most Americans, did not vote for, combatting a disease no one expected. Speaking, in a way, the language of the ill.

To say it is an uncertain time is an understatement. Yet as I sit at home, writing always writing, and come to terms with how my career as a poet will change now that we live in a world of social distancing, and I personally deal with MS, I see that these new developments can be mourned, can be feared, but ultimately have to be absorbed into the lexicon of our work as writers. We are starting another journey with the same voices we had prior, but with a new language. We can only hope that it carries us as far as we previously wanted to go.

Deonte Osayande is a poet and nonfiction writer from Detroit, Michigan. He is the author of three collections of poetry.