Healthy until I wasn't

I went to see a doctor about knee pain when I was 25, maybe I was 26, then I was in my late twenties and my chest hurt, my scalp was reacting, I was reaching for something I didn’t know how to grasp. Or what it would mean to do so. Then, I wanted to eliminate the pain, the itch, the invisible heat. I wanted to stop its spread and save myself from having to know more.

Now, I want to understand it.

Last fall, I was diagnosed with psoriatic arthritis (PsA), which is an unfunny way of telling people you have psoriasis and arthritis. It’s a diagnosis that happens by elimination, mostly. Ask your friends, ask yourself; pain is unique and often unpredictable. You learn the pattern and the pattern changes, like any intelligent prey intent on becoming the predator (or simply surviving).

The thing about my PsA is that both the Ps and the A are hard to understand and even harder to explain. It’s not just that you can’t see the damage, it’s that at almost 36 years old (next month!) I’m both young and old enough to be a mystery even to my own pain. I tried the elliptical, I tried Skyrizi (3 injections in, control is not everything… to me, at least), I tried yoga. Believe me, I tried not trying too.

But I’m still me. And so a thought emerged last week: What if I tried to make friends with the pain? Not just a truce, but some kind of kinship and respect. If I could get to know the pain, try to really feel it instead of denying it, maybe I could find some peace.

Medication is important, sanity is important, and so is making sure your joints aren’t turning to ash in your thirties because you’re a woo woo ninny who likes looking at the moon. That said, empathy is important too. Especially when it comes to yourself—your whole self.

I’ve been doing my homework. I made appointments and follow-up appointments. I tried (and am sticking with) acupuncture. I read more about inflammation, which as the devil would have it, affects everything!

Why? Because the body is like a house, and it’s a fixer-upper for sure. Say you don’t have a storm door to your roof deck and rain seeps into the cracks and trickles down through the ceiling and pools on the floor. It would be natural but unwise to stand there and say, Shit, and go no further. The time comes when you can move out—or you can choose to go searching for the source of the pain. Its origin story.

Everything has an origin story. Even rain. Even pain.

But not because I can’t sit in the dark and feel bad for a little while! I’m learning that, sure, I’m entitled to stare at myself in the mirror until I no longer make sense to myself. Productivity is not king, but it is often my go-to when I need to feel. And feel better.

And because there is so much magic in the world, so many good movies and shows and concerts, and so many incredible things to cook and eat. Sometimes the air quality goes from “hazardous” to “moderate” and you look at the moon hanging over the park and you think: I’m still alive. I’m doing it. That moment is a great one.

Finally watching The Leftovers and feeling incredibly optimistic instead of destroyed. Ready or Not 2: Here I Come being fantastic, not just for a sequel but as its own beautiful, sick, sisterly thing. Matthew Rhys in general, but also being gifted a shirt straight out of Widow’s Bay (courtesy of Patti Lapel and also my husband).

A gorgeous book cake to celebrate Samantha Paige Rosen’s wonderful anthology, Living, Together. (Sam was one of my first-ever students at Blue Stoop during the pandemic and I thank her for that!) Teaching as part of Writing Co-Lab’s Summer Camp and planning for future standalone Power Hour sessions. (I love doing them so much.)

Any pink drink. A book in its glowing, real infancy. Being your (my) own plumber! And finally, more events with great people and great books! If that’s not at least part of the dream, I don’t know what is.