Summer is here, and with the wide dissemination of the vaccine, it seems that for most of us, the crisis of COVID-19 is ending. Why, then, do I feel some lingering regret?
Don’t get me wrong — like everyone, I’m ready to be done with masks, social distancing, fear, the politicization of calamity, and of course the very real illness and loss that has touched us all. But in our rush to escape the constraints of the pandemic, I’m afraid we will skip the lessons we might learn from this tribulation.
Since the outset of this crisis, I’ve been thinking of the opening lines of the poem “After the Revolution for Jesus, the Associate Professor Prepares his Final Remarks,” by Miller Williams:
What the blind lost when radio
gave way to TV,
what the deaf lost when movies
stopped spelling out words and spoke,
was a way back in. Always, this desire
to be inside again, when the doors are closed.
The pandemic has sent each of us on our own personal emotional journey. I guess I’m worried that we may try to forget that fraught terrain, as we try to put COVID behind us. Because — rightly or wrongly — I believe the fear, helplessness, frustration bordering on rage, and mourning so many of us have felt during this crazy time are similar to emotions I’ve experienced living with a disability.
I have been paralyzed for 25 years, after a traumatic injury damaged my spinal cord at the T-1 and T-2 vertebrae; I have the ability to use my hands and arms but not my legs. At times I am surprised that it’s been a quarter of a century, as my pre-wheelchair life is still vibrant and real in my memory. Other times, I am shocked to see photos or old home movies where I’m standing up and walking around. It seems like several lifetimes ago.
As I’ve listened to friends dealing with the pandemic, and observed how we’ve dealt with COVID collectively and individually, I have been reminded of different stages of my own coping with and acceptance of my paralysis. And though the analogy is inexact, and this may not provide any solution for you, it may be helpful as you find your own “way back in.”
The opening lines of Williams’s poem suggest the blind and deaf were, for a time, on equal footing with the sighted and hearing. When the structures of popular media did not disadvantage them, they felt included. What the blind lost, then, was that sense of belonging, where they were able to have the same experience as everyone else.
Maybe I’m imagining that “way back in” differently; maybe our current situation presents the opposite effect. What if the non-disabled have gained a window into the disability experience, courtesy of the pandemic?
Most of us experienced the onset of the pandemic as a shock: COVID-19 went from rumor to full lockdown almost overnight. Suddenly, we found ourselves restricted in where we could go, and if we dared to go outside, it was with a host of protections and proscriptions. The change seemed arbitrary and irrational, as though it had come down from some malevolent deity, punishment for some forgotten infraction, generations old but now, suddenly, very real.
I experienced the onset of paralysis in much the same way — a severe transformation, where one moment everything was “normal,” and then it was completely different. Even though the world appeared the same, it was suddenly all hostile terrain. It seemed irrational and oppressive; like any sudden change, it was also terrifying.
Because as frustrating and enraging as it was to be so limited by the new conditions of the pandemic — particularly when the world outside seemed not to have changed at all — it was also frightening. The threat was invisible, we were vulnerable, and there was no immediate recourse. It was a violation, a blow to the illusion of invincibility we cultivate and cling to for much of our lives (if we are lucky).
This is a fact that disability teaches you right away — this physical affront is an imposition that is intimately yours. As much as you might try to share it with others, ultimately you face the disruption, whether physical or psychic, alone. Even though many of us were not literally isolated, the crisis put each of us into some version of imposed solitude.
Some of us experienced the opposite — forced to be in harm’s way, due to one’s occupation or by economic necessity. The psychic trauma of workers on the front line, including those in warehouses or otherwise behind the scenes of our hyper-convenience economy, is another part of this story we must not forget.
Boris Esterkis, the man who became a sort of “wheelchair godfather” to me, gave me some great advice as I was leaving the hospital. “Don’t wait for your friends to come to you,” he told me. “You go to your friends.”
And we have done that. We’ve connected with friends and family (and work, for better or worse) using electronic media, and though imperfect, it’s an adaptation that has alleviated some of the pain of enforced distancing. Like learning to use devices such as wheelchairs or braces, it’s a new negotiation with reality, a new way of moving in the world.
The analogy isn’t perfect, as I said. Williams’s poem is talking about media, and I’m talking about trauma. But the analogy really breaks down when we consider that if COVID-19 is like every other plague, eventually it will end.
I don’t expect my disability to disappear, or improve in any substantial way — my situation has been basically the same for 25 years — and maybe I am asking too much to suggest you use your trauma-induced fears and frustrations to deepen your understanding of disability. But one facet of my experience may be useful to you.
It’s a popular, if grim, formulation that every day you live is one day closer to the grave. But in the first year following my injury, particularly when I was freed from the hospital, I had a strange sensation. For a moment, or really a series of random moments, I sensed I was moving away from, rather than toward death. My transformation, from a patient who needed eight hours of home care assistance to a more or less fully independent individual, felt like I was starting over from childhood. I wasn’t just surviving: I was regaining life, rolling back the odometer.
As you move away from the pandemic and resume your life, try to appreciate that, for a moment or two, you are moving away from death. It may be an illusion, like looking backward on a carousel, or a dream where you can fly, but try to savor it if you can. It might not be a way back in, but it may offer some new insight into your life and the lives of others. At least, it could be a phenomenon you might otherwise have missed, and something to marvel at when this is all over. ❖