A Personal Update

I'm nervous about sharing this.

Dear friends,

I’ve reached a point where I feel I need to share this with you, even though I’ve tried very hard to avoid it. I’m not sure why. People share this sort of thing all the time, but for me, I reached a point where I never wanted to share personal information online ever again, unless it was in the context of art that I made. But I don’t know how to avoid this. I’ve been thinking about what to do about it, what to say, and not coming up with a good enough answer for far too long. So I’m just going to do it like this.

A few years ago, I started to get really sick quite often. What might affect other people for a day or two would find its way to me and put me out of commission for six weeks, sometimes longer. There were other alarming symptoms I won’t go into. I thought I just wasn’t being tough enough. I was very critical of myself. Why couldn’t I just be better? A better person, in a better body. I made my diet healthier. I tried to finesse my other health practices. I twisted myself and my routines into bizarre shapes just to try and make life liveable. I took supplements, sought medical attention, both alternative and mainstream, but mostly I just tried to get on with things. I’d feel good for a month or two but then it would happen again and it all fell apart. Nothing worked.

This part’s even harder to talk about, but I was also constantly being told that I was fine, that I just needed to work harder, try harder, push myself harder, shake it off. That very much did not work either. I started (but didn’t finish) a long essay about drowning.

Recently, I finally went to a doctor who took a look at me and said it looked like I had a rare myeloid neoplasm that manifests as an autoimmune disease with a distinct dermatological presentation. Technically blood cancer, but with a long and complicated name. This type was very uncommon however, so it probably wasn’t that, but he wanted to do a biopsy and some blood tests nonetheless just to see. To his great surprise the results came back positive.

I really don’t want to be sharing any of this, but I don’t know how to avoid it any longer while still maintaining a presence as a writer, here or anywhere. I am in awe of the elegance and grace with which others seem to navigate this sort of thing, but the right pathway for me has proved elusive. In comparison, I feel so clumsy, all tangled up in ineffective determination and optimism that looks more like denial in retrospect.

I don’t want to make this seem more dramatic than it is. There’s a very good chance, statistically speaking, that this is something I can get treatment for and then manage as a chronic condition with relatively normal abilities and life expectancy. There is a much smaller chance that the prognosis is grave and my time here will be drawing to a close in the next few years. But that is always a possibility for any of us, no matter what our bone marrow is getting up to in secret.

I firmly believe that I will be able to work properly again, that with some rest and understanding I will be able to catch up and get it all under control, and that I can do so sooner rather than later. I’m working on it. I’ve been working on it, I just keep failing, but I’m not giving up. I fully intend to resurrect Essay Camp, and my essay series, and get my book projects back on track, and all the rest.

I’m not asking for anything. I can’t handle a fuss, or a lot of questions, or pity, or any advice. I don’t want this to be a big deal, I am only disclosing this now because I don’t know how else to move forward and keep writing for you without doing so. This began to get much worse right after I tried to step up my game here on Substack, which is really unfortunate, but I’m going to keep working on it until I can get back there.

I would prefer not to discuss my health at all, here or elsewhere, but I might make references to this process and experience sometimes, as one would among friends. I’m not really sure. For example, I wanted to share with you that at the hospital last week, I saw something I hadn’t noticed before in the waiting area, a vending machine for short stories.

You press a button, English or French, and out prints the story on a little piece of paper, a long scrolling thing like a receipt. Some of them are quite long, some very short. Whoever came up with this is a genius. In a low moment, it made me feel like the world was good. That it was kind, and full of wonder and promise and beauty, even though it is many other darker things as well.

I sat there printing and reading stories until my name was called. They were of literary quality. One was really an essay, another a piece of short fiction with a twist at the end, and another was very short indeed, more of a poem. I saved it and put it on my desk, choosing to take it as one would a fortune from a cookie fortune. It went like this:

Awakening

by Paula Kirman

she tasted the sweetness of

the morning dew,

and spread her arms

in the wind, while

the storm she

survived blew into the

distance

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