distances

& the chronically ill in a time of acute illness

[Edward Hopper]

The chronically ill are judging you. I can’t lie: we are.

I am watching so many people of my generation post to social media every few minutes, around the clock, freaking out. These are able-bodied, privileged people, who own their homes and have real incomes, and most of all health—things I do not have. I am watching panic attacks and wildly spiraling anxiety in real time from people who are the lowest risk population. I am watching so many ignore the real endangered, the elderly and ill, who have the disease, who need help, but these people would be the first to jump over a bridge to get away from their germs. I am watching so many of you, who ignored the pain of the chronically ill around you for years, who did not want to believe in our other pandemics, who wondered when we’d snap out of it, who felt our pain and suffering to be unreliable, now come to us for advice. How are you doing? they ask and when we answer, ok, they are wondering just how? What is the secret we might have while they weren’t looking all these years? Are there supplements I can take, IVs I can do, hey you know some things about health maybe you can tell me how to be more like you? Suddenly they want to be us.

Suddenly, magical thinking: maybe our broken bodies are poor hosts for this illness and it won’t come to us. Maybe God has decided we have suffered enough. Maybe we will actually get the other hand because there is nothing like justice rendered from the emotions of guilty people.

I continue to be calm. Daily healthy people write to me and thank me for my calm. It’s a breath of fresh air, your sanity, your ease. How do I do it, they wonder? Am I not scared just a bit? Look, you can tell me, they seem to say, it’s safe to confide. But I have nothing to tell them. I am not worried. Or maybe I am to some degree but I just know my worry will not do a thing. I have spent so many years worried and it did not a thing.

Some things do hurt. When you see people say they would rather die than live like this, without understanding the chronically ill live like this very often. Most my life has looked like it does now: stay at home, wash hands a lot, wears masks when out, take my temperature, be vigilant about symptoms, see few people if any. This is the smallness of our world, the quiet tension of our daily life. You would rather die, you say, this is a sort of death.

I don’t know what to do but laugh, a very dull brassy dead laugh.

How can you laugh at a time like this?

Shrugs.

How can you freak out at a time like this?

How can you feel everything at a time like this?

How can you feel nothing?

What is a fever?

What is a dry cough?

Do you have any books you could recommend please?

One day, this will be over, they say. One day, and you believe you will be changed forever. And then the next one will come and the next and the next. All these little deaths. You will mourn not for the dead, but for the loss of yourself each time.

The chronically ill are watching you. They take notes. This is why we don’t trust you. This is why we don’t reach out. This is why we don’t ask for help anymore. This is why we keep to our own communities. This is why nothing you do can hurt me, nothing can hurt me actually like my own body has hurt me. Welcome to being hostage to your own shell—don’t worry, this will pass for you. But it won’t for me and millions of others. We will keep on surviving in our small ways, the ways you deem unbearable, and we will keep watching you, always from a distance, distances that we knew long before you ever measured what a distance really means.