Disabled Chronicles – Covid19 Edition, No.21
He was late.
I hung around the TeleHealth conference room 20 minutes past my 3:30pm appointment. I checked if I had connected correctly, followed all the procedures… and I had. It wasn’t me, it was Him.
So I waited some more.
A very bored but familiar lead doctor popped up on my screen, followed by a very quiet secondary Fellow I had never met. We exchanged pleasantries and I was informed the Neurologist (in charge of the SMA Clinic overseeing the coordination of the dosing of Spinraza in S.Florida as far as I can tell) was wrapping up with another patient and would be with me shortly.
In the mean time, the lead doctor asked questions on how I was doing, with quarantine, Spinraza improvements – life.
I gave my honest assessment: holding steady but worried about what my next dosing may look like in the wake of this pandemic.
The Neurologist flickered onto all of our screens, his steady calming voice bringing an instant smile to my face. He didn’t pull any punches or sugar coat any truths. His style is direct, kind but firm. I respect him and the direction and things he says. And it was with eager anticipation that I listened to him during this conference.
I gave him updates on progress and got straight to my worries: how is my next dose going to be handled?
This procedure is invasive and cannot be done at home. It requires a sterile environment and deft hands to snake that catheter from behind my ear to my spinal column to administer the medication.
Dosing requires labs, four days before I go to the hospital, to make sure my kidneys are doing okay enough to handle another dose. Then an hour and 20minute special transportation ride down to the hospital where it will be done, 5 hours of wait/prep time/administering, then another hour and 20minute ride back home.
All of these excursions equate to possible COVID exposure. Exposure to people handling my arms to draw labs, drivers handling my chair/me to drive down to the hospital, exposure to folx at the hospital, exposure coming back home.
Exposure that makes the benefits of Spinraza void if I die after getting it.
And so we spoke about this, in measured, careful words, the Neurologist and I. I voiced my potential precautionary measures nervously, he listening until I was done.
He spoke the words firmly and kindly, letting me know that as of now, all injections have stopped.
I cannot say that I was surprised. A virus like COVID in tender SMA lungs, unable to fully draw in breath or cough and the ravages, would be too horrendous to recount. The end game, too real to consider.
I was relieved to hear he had stopped anyone of Us SMAers from willingly wanting to risk our lives for a chance to live. And in the same turn, I was petrified as to what the coming months meant to the gains and progress of these last ten months on Spinraza.
We spoke about this too. I positing potential avenues for making dosing safe, him dancing through my posits gracefully. Until finally, he said words that stopped my problem solving mind in its tracks.
“You, don’t want to get this [COVID]. No one with SMA does.”
And it wasn’t so much the words that he spoke, as it was the gravity behind them. He spoke like a man that has seen some things about SMA and COVID. The incongruity of it. The things he could not say about it.
He spoke like a Dad or caring loved one saving you from yourself.
For all intents and purposes, my next Spinraza dose in six weeks, is off, thanks to COVID.
The bright penny on the horizon is a new class of oral medication, similar to Spinraza that is awaiting FDA approval in August. This would require no hospital. Just a daily oral liquid dose. That’s it.
There is always a slight decline that occurs before each dose. Things get a little more arduous, a bit more frustrating. But usually the knowledge that the next dose is 5, 3, 1 week away makes the dip bareable.
But we’re barely in mid May and August feels like a lifetime away.
My fingers are already beginning to falter. I’ve had to space out, then halt my crocheting of ear savers in order to preserve my abilities.
My arms burn a bit doing things I’ve not had troubles with these past three months.
And I know these coming months will be like watching my wings collapse onto themselves, where once they had been able to hold their own weight, spread out, catching every wind and stray breeze, daring me to fly, ushering me into rarified air. This turn of events will be me, willing them to lift and watching as they try, falter, flicker and wither instead.
No Spinraza dose in June will be a slow grounding. It will be a profound grieving of what I have been able to taste these ten months as my gains slip through my fingers.
I am afraid for Me.
I am afraid.