These are the words my cardiologist told me when I was diagnosed with POTS (not a cooking pot, or an herb). These words run through my head almost every day.
“You’ll feel like you’re dying, but you aren’t, until you are…” Talk about your own body gaslighting you on the daily. POTS isn’t the only thing causing this pain—like many people with disabilities, I have a list—but it is one of the main factors.
I wrote about pain that doesn’t harm yesterday. This kind of pain, the every day pain, is a bit different. This is a burning that won’t go away, though it also (probably) won’t kill you. This is a suffering that is enduring. You can’t wash it out of your mouth with milk.
You might read those words and think, “what a horrible thing for a doctor to say!” But when I heard these words, it was like being punched by mercy. A punch, because way to be highly specific and confronting there, doc. But mercy, because it’s true. That is how I usually feel. (Highly specific truth keeps me going when all else seems to fail.) Some days are good days, though. Some days I forget my mortality all together and am caught up in the moment and I forget that I’m hurting. I’m usually writing or baking when this happens.
Today isn’t a good day.
I’ve been working on a book since the dawn of time… I mean, since October of 2015 (but we’ve had some long years, y’all, so my original statement stands). It’s called, Instead of Dying, I Wrote this Book. Here’s an excerpt from a piece called “Nemesis”:
“I cannot defeat you or push you back,from “Nemesis,” Instead of Dying, I Wrote This Book, A. Almond-Harvey
so I will sink into you.
I will wrap myself around you
and squeeze at your depths
and change your nature.”
This isn’t about giving up or giving in. This is chronicling the moment in which I looked right into the eyes of the pain that I face on a daily basis, and said, “you don’t get to define me. I get to define you.”
It’s perhaps an unconventional approach. And yet, on the days when I feel like I’m dying but I’m not at all, I don’t try to avoid the pain. I meditate on it. I notice its breadth and depth. I rewrite it by refusing to avoid the sensation. I “stand” as strong as I can and as long as I can (even though sometimes standing is sitting for me—this why mobility aids are freeing, not limiting, btw). I get to continue forward with my passion and purpose and creativity no matter how hard this pain pushes back.[tweetshare tweet= “I don’t try to avoid the pain. I meditate on it. I notice its breadth and depth. I rewrite it by refusing to avoid the sensation. I stand as strong as I can… no matter how hard this pain pushes back.”]
But, it hurts. And some days, I’m not so strong. On those days, I sink into my bed, and hold my dog and my stuffed crocodile (don’t judge me), and I fall deeper into my breath. I let myself sink until I feel like the Earth can support my weight, and then I rest.
Either way, I’m writing this story. The pain only gets to have the voice that I give it.