I have a friend who texts me poems every day. My phone chimes while I’m pouring my morning coffee. Today’s poem is by Lawrence Ferlinghetti: “I am signaling you through the flames. / The North Pole is not where it used to be. / Manifest destiny is no longer manifest. / Civilization self-destructs.” Over the last several weeks, I have often wondered if civilization is self-destructing. Nothing is manifest. Nothing is where it used to be.
I have lived through another kind of self-destruction before. In 2016, half-way through my PhD program, I got sick and never recovered. My immune system began to attack itself. For the past four years, my body has been signaling me through the flames; the landscape of my life was suddenly, unexpectedly transformed. And now? COVID-19 has caused yet another transformation, for everyone, but especially for those with compromised immune systems. I have found myself again under siege. Living with chronic illness and pain in the midst of a pandemic requires a new map, a new way to navigate over land.
Our collective quarantine is designed to protect people like me, who are at a higher risk of infection and death from COVID-19. When people imagine high-risk groups, they most often think about the elderly, about the virus rampaging through nursing homes. Sometimes people think about those who are visibly disabled. But invisible illness is another kind of vulnerability—one that isn’t always recognizable to those outside of it—and it doesn’t necessarily announce itself. If you are staying home, you are staying home for me, even if you can’t see my vulnerability by simply looking at my body.
With chronic illness, there is an ever-present camouflaged grieving. This kind of grief has its own rhythms. It rises and falls, pulls you out to sea, threatens to drown you. When you get sick and discover suddenly that the shadow and act of your life will be radically different from anything you had previously imagined, planned, or hoped for—well, that is its own kind of unending loss.
Here are some more quantifiable recent losses: I no longer have access to the medications and treatments that cannot be self-administered at home—like the weekly IVs and injections that helped keep my body semi-functional—because the risk of going into any of my doctors’ offices is currently too high. The bloodwork that monitors organ function, blood cell counts, and inflammation markers—usually required every 8-12 weeks—cannot be drawn. Thankfully, I can still talk with my doctors over the phone, but any routine screenings they might need to order—ultrasounds, MRIs, CT scans—are now out of the question, since they have all told me not to set foot in a hospital unless I think I am dying. Ironically, maintaining regular access to medical care during a pandemic puts me in peril, since I could catch COVID-19. But postponing regular medical care comes with its own set of threats: a prolonged flare-up, pain levels that continue to ratchet up until they’re unendurable, more months of writing time lost to illness.
Last week, one of my doctors raised the possibility that I might need to remain in self-isolation for the next 18 months, maybe longer. Even if there eventually is a vaccine for COVID-19, my dysregulated immune system might not be able to handle it. “I don’t even want you to get a seasonal flu shot,” she reminded me, “and we just don’t know enough about this virus yet to predict much of anything.” Listening to her discuss a long-term self-quarantine scenario is especially scary, because it took nearly four years, and a whole lot of energy and expense, to recover some of the functionality I lost when I initially got sick, when my body began to attack itself. And by “expense,” I don’t just mean that there were extensive economic costs—which there were—but also that there were spiritual costs, costs that I still cannot quite communicate.
Before the pandemic, my health was far from perfect, but it was far better. I could walk up and down the stairs of my house without enormous effort. I could concentrate long enough to read a book. I could sit at my desk to write. Now, the duct tape that has been holding my body together is coming unstuck. My joints are swelling. My pain levels are increasing. And it only took 47 days for this to happen. What state will my body be in 18 months from now?
Terror threatens to overwhelm me. I’m terrified of potentially catching COVID-19; like everyone, I’m terrified of the possibility of dying alone. I’m even more terrified for my neighbors and loved ones, terrified that our collective losses will cause the kind of grief that comes from prolonged trauma. I’m also terrified that, even if I manage to avoid COVID-19, without regular access to medical care, my health could deteriorate to such an extent that I am bedridden or end up in the hospital anyway. All of the questions running through my mind right now have impossible answers: How sick do I have to get again, before the risk of physically going in for treatment is assuredly worth it? How long will it take for me to recover this time? How much damage will another flare-up cause? How much pain is too much pain? How much suffering is too much suffering?
I am not alone in this; everyone is suffering to some extent, everywhere, and many people have it much worse than I do. This is not a complaint. It is an exercise in transparency and vulnerability.
People like me, who are at a higher risk of infection and death from COVID-19, depend on others to make smart, science-based daily decisions in order to protect not just themselves and their families, but also the wider population. We depend on healthy people to stay home if they can, to wear masks, to not gather or stand close. I depend on you.
Our solitude, then, is a kind of solidarity. And my hope is that we will use this period of collective solitude to stop for a moment—“to think what we are doing,” as Hannah Arendt put it—to make a post-pandemic world manifest, a world that includes and protects and values the chronically ill and disabled and elderly. A world that values vulnerability. There is already so much wreck and ruination, but we can still draw a new map, chart a different course. What if our new normal is a more compassionate one? What if society shows more solicitude to the poor, the weak, the suffering? What if this infection strengthens our bonds? As Walter Benjamin wrote, “Only for the sake of the hopeless ones have we been given hope.”
Nothing is manifest. Nothing is where it used to be.