The last time I shared an update with you was March 12. I didn’t know then that the day before would be my last normal day for the foreseeable future. I wish I had taken a moment to savor the hugs I gave my aunt and uncle as I left their house. I wish I had enjoyed being mask-less a bit more. The list can go on and on… but what it comes down to is that COVID descended on the East Coast and has yet to ease its grip on our reality.
There are a few markers of time passing. I started a new oral chemo, Votrient. I went back to work via remote learning. I directed and edited two virtual productions. I had another birthday. I was a keynote speaker at CancerCon. I started leading two online summer theatre programs when school ended. I directed and edited another production.
It’s been almost five months. 147 days of worrying about loved ones. 147 days of relying on others for my groceries or food delivery. 147 days of no physical touch with another person, aside from being poked at for an MRI, lab work, and blood tests. 147 days of calculated small risks. 147 days of wondering when it will be okay to ease up a bit. 147 days of a pit in my stomach named Pandemic taking residence next to another fear: Cancer.
These two overwhelming, enormous sources of fear, anxiety, and change reside next to one another. In all these days that the country been watching the maps change color and numbers rise and fall, I’ve also been monitoring my own non-COVID health. After being on Votrient for 16 weeks, my liver enzymes decided to spike quite high. I was taken off of the drug three weeks ago, and they’re still climbing. An ultrasound came back normal, but the cause remains a mystery. I’m trying to figure that out with my care team now.
I don’t have anything new or exciting to say about COVID-19 that hasn’t been said already. But I do want to explain that for those of us who are immunocompromised, we are at once strangely adjusted to this reality of washyourhandswatchforsignsandsymptoms and also purely terrified of it. Just as I was ending my time on disability, COVID came along. I’ve been on some version of high alert since March 28, 2019 when I had my first chemo infusion… really, I never left.
Especially at first, as others were expressing their discomfort and fear, I was a resentful. “Oh, you feel cooped up in your home? Lonely? Separated from others and fearfully protective of your health?” I had been there, done that, and so often felt completely forgotten. With all that still going on, COVID specific fears settled in to say. When I look at back to school plans, I grow sick to my stomach. I struggle when others’ definitions of “being extremely careful” are vastly different than mine. I grow angry at the selfish so-called patriots who see mask wearing as a limitation on their civil liberties instead of a tool to shorten the lives of others. I often feel that I’m spinning plates: got to keep my own personal health plate spinning, and also be vigilant about COVID, and think about being a living breathing human besides all this, lest all three come crashing down.
So while I have nothing new to say about this virus, or this experience really, I do just want to drive home: those of us with chronic health conditions are not new to this. We can be your sherpas in some ways. (We discovered Netflix Watch Party first, for the record.) But for the very same reason of personal experience, COVID is hitting us in profound ways.
Be patient with us. Understand when we say no to arrangements that challenge our comfort levels. Listen to our very real fear and anxiety, without pushing it away with platitudes. Ask how we can still spend time together.
I want to believe that this pandemic is going away sometime soon. I don’t know how true that is. Regardless, let’s practice being human and kind and understanding and generous with one another. We could all use some more of that.