I Am One of the Immunosuppressed
I have MS. My disease-modifying therapy is Rituxan, a chemo drug used off-label for MS. The idea is that, with an autoimmune disease like MS, if you can wipe out the offending B cells, it might slow down the progression of the disease — put it into remission. At least for a while.
When I was diagnosed and chose this DMT over two others (they all suck, though I’m grateful for them), I knew I’d be immunosuppressed and just resigned myself to being sick all the time. Though I did get sick now and then, it was far less than I’d anticipated. I tried to use diet, vitamins, and supplements to boost my immunity in positive ways — for whatever it was worth. I longed to have some sense of control over some part of my world order, because MS is a real mind-fuck.
And somewhere along the way I realized: We’re all dealing with a mind-fuck of our own in that we don’t know what’s coming next, but we do know that, eventually, something terrible will come. We’re all walking through the same jungle, but I’m being slowly swallowed by the snake instead of waiting for it to strike.
There’s a curious brand of loneliness that accompanies being a member of one of the “at-risk” groups.
As Covid-19 has swept the globe with a horrible pulse of its own, I’ve worked hard to keep my shit together. I’ve made light of it, downplayed it, and embraced gallows humor — in between vigorous hand-washings, of course. But I’ve made plenty of mistakes too, like touching the edge of my water bottle and drinking from it after touching bedknobs and broomsticks and all manner of things. I’ve wiped my nose with the back of my hand after probably brushing it against someone’s coat. I shook my physical therapist’s hand, and then we looked at each other and apologized. I didn’t get sick, used insane amounts of hand sanitizer, and stayed calm.
Now, as dominos of closings, emails detailing safety precautions (from my bank?), and innumerable headlines break over me, I feel myself drowning in unreality — and fear. I’m afraid of all the unknowns and the ability of our government to handle this well. I’m afraid for people who don’t have the privileges I have who will be at more of a disadvantage than before. And I have to admit that I am afraid for myself.
I’m 45, in reasonably good health (aside from MS), and I have insurance — so I can seek medical attention without fear of catastrophic bills. I don’t think I’m going to die. And yet, there’s a curious brand of loneliness that accompanies being a member of one of the “at-risk” groups: the elderly, those with underlying conditions, and those who are immunosuppressed. While others can move through their now-disrupted days fairly certain they’d be okay even if they contracted coronavirus, I’m less certain.
I’ve learned to distrust my body. It gets dizzy and nauseated and exhausted and sleepless and numb and blanketed with pain. It’s been an unreliable narrator for a long time. So when someone says “and the immunosuppressed,” I feel a heavy stone sink into my awareness and settle in my sternum. I am one of those people. I am at-risk.
As I’ve combed through articles specifically about my kind, I’ve encountered theories that having one’s B cells suppressed could be a good thing if you get infected, as a robust immune response might make symptoms worse. But no one knows for sure. We don’t have enough tests. We don’t have accurate numbers of those infected. We don’t have leaders at the top who make decisions based on care for the well-being of others.
Here we all sit in uncertainty, some of us in a specially reserved section closer to the front.
This all smacks of what a lot of parenting looked like in the ’80s: half-assed, reckless, self-serving, and based on limited information. In other words, it feels like no grown-up is here to care for us, and that’s scary.
I do take some comfort from some things: watching the people in Italy singing together from apartment balconies, the rush to set up free meals for kids who would otherwise get them at school, and companies making services free during this strange time. All of those things are real and heartwarming. It’s also real that my next infusion is at the end of the month and it will wipe out part of my immune system all over again. If I don’t get it, I risk having an MS attack, which could have much bigger implications than getting the virus. Hats off to Joseph Heller.
So, here we all sit in uncertainty, some of us in a specially reserved section closer to the front. I have to remember that we are together, even though it feels lonely up here in the “special” seats. I have to remember that I may not trust my body, but I see evidence of people doing kind, empathic acts for each other all the time. So, I’ll keep washing my hands, watching videos of harmonizing, and remembering that as terrible as this is, it shows how deeply connected we truly are, below our skin, between our cells, with the very air we breathe.
The coronavirus outbreak is rapidly evolving. For updates, check the U.S. Centers for Disease Control and Prevention as well as your local health department. If you’re feeling emotionally overwhelmed, reach out to the Crisis Text Line.