Over the last year and a half I’ve been able to write about living with hemophilia for Rare Disease dot net. Starting the once-a-week prophy treatments has certainly given me more to write about. I’m actually having to temper my reaction to how good it’s been. One example is how having higher clotting factor levels on a regular basis has afforded me a sturdier arthritic ankle. That joint will keep me honest for the rest of my life, make no mistake about that, but the change has helped me take more frequent walks.
Even felt brave enough for a very, very short jog.
So, is this a OctoberFeast horror story about the eternal struggle for the heart between the donut and the walk? No, it is not. Unfortunately. A far more skilled scribe would be required to go to the places one would need to go to tell that true story, from both sides of the tug-of-war.
This is about depression.
(Female voice, whispering: “Dough… dough…. dough….”)
Not even go there. I’m aware there’s a small box of donuts downstairs. That ignites a partnership of convenience between my sweet tooth and ADHD, which is always looking for a way out from the keyboard. Whether the distraction comes in the form of an endless paragraph or a donut matters not. Truthfully, and that’s what has made writing so much fun lately, if Gwenn were home I’d be inviting her to raid the box with me. Speaking of sweet things, something that has made writing sweeter these days have been the emotional surprises that occur.
You sit down to articulate one thing and that soon becomes a vessel for something else.
I’ve long understood the link between the mind and the body. Being born with a bleeding disorder shaped that, of course: you make a bad decision with your brain, and your body pays the tax. You learn that much faster than most because, well, you’re suffering a worse-than-usual consequence. I missed out on a ton of injuries by never trying the next big jump first.
Because, when someone really ate shit on a physical dare, there would be no second attempt.
Anyway, what about donuts again?
Oh, I woke up today debating whether I even wanted to leave the house. To get donuts. I’d woken up the last couple of days with the blues. I’ve reconciled that depression is a funny Witch’s spell in my life: a dash of hereditary ham sprinkled with side effects from medications for medical conditions that are connected to increased odds of depression. Season that with allergies and a love for 80s alternative mope-tops like Depeche Mode and The Cure, and waking up on the wrong side of the let’s go to bed is understandable.
What got me out? Well, that connection to physical and mental health. It’s undergone some retooling in recent months; I switched an HIV medication to alleviate mental health side effects. It’s been night and day. I started treating hemophilia prophylactically for the first time a month-and-a-half later. Like the HIV med switch, I wasn’t really expecting such positive results.
It upset that well-balanced pie chart, those recipes I’ve made to make sense of my overall health. I’ve found that method, the older I’ve gotten, more honest. That makes it harder sometimes, too. But the rewards are worth it- being reminded that not all medical surprises are bad, at the advanced and delightfully uneven age that is 49, hits my feels.
In wondering what I would do if I didn’t meet Gwenn for donuts, my mind went through the new options: take a walk on a beautiful day? Meh. Lately, if I get up early I’ll go take a walk. Or do some stretches. Changing my wake-up routine and having more options than doom scrolling has helped my mood so much. Writing has been great, but I didn’t have the inspiration to write. I have two unfinished thoughts compiling a thousand words or so each in my Drafts folder, but when my headspace is off I go all Jason Voorhees in editing: chopping away indiscriminately.
Sometimes honoring your art is knowing when to respect it by getting the fuck away from it. And honoring your internal recipes, and realizing when it’s serving a heaping cauldron of glowing, green Sadness Soup is running towards the cupboard. Adding some missing elements, try something new. I didn’t like feeling depressed, but I enjoyed getting to the bottom of the bowl way quicker than usual. While last year was hard, it forced me to be more honest with Gwenn and my doctors about what was going on.
That lead to being open in changing an HIV medication that, last year, produced my highest t-cell count ever. My t-cells have been awesome for a long time and that numbered averaged out, but those things subconsciously factor in. Intellectually, I know that I’ve switched meds a lot over the last twenty five years- always due to side effects and never because of failed efficacy: I’m fortunate in that regard. Gratitude is great, but you can gratitude yourself into a corner because, “it’s bad but it’s nothing what so-and-so dealt with” or even things you yourself have experienced.
So, in feeling the recent joys of a physical health beyond my expectations, as well as the benefit in switching HIV medications, I just accepted that today was an off day. As was yesterday- not the whole day, of course, just the start. So, like yesterday, perhaps, things would improve. The one thing I needed to do today was call my special pharmacy and get my hemophilia medication sent to me a touch earlier than the usual schedule. I figured I’d knock that off, then meet my love for some deliciousness.
Now, part of the re-ordering process is answering a lot of questions. They’re usually the same questions and I get companies not wanting valuable medication to go to waste. Checking in regularly and staying in touch makes sense and I am so grateful for the medical care that living with multiple medical conditions has afforded me. Thirty minutes a month or so is easy. But today it was a slog, my negative voice started creeping in and ADHD made it harder to follow along.
It was fine, but in the moment it took more fuel than usual and I respected the reality even if I didn’t understand what was up. I just haven’t had two days in a row like this since June. Registering that helped a ton. So did reading a text from Gwenn, who I keep in the loop and who senses what’s up when I don’t yet know myself. Just sending love, letting me know it’s all cool if we do the donut thing another day. It was that, and realizing that I didn’t have the pep in my step to do something healthier-in-other-regards that got me out the door.
I went to the donut shop. I went to the coffee shop. I was able to be there, full of gratitude, and able to lend an ear to a friend that needed one. I didn’t have something to write about earlier, but I ended up writing this. That’s something that wouldn’t have been in the recipe book before. It’s a new addition to the recipe.
Okay, Gwenn is home, which means one thing: it’s time for me to raid those donuts.
Not a sexual innuendo- I’m talking about the supple, mouth-watering glazed goodness of…. well, you know.
Damn, I did it again.
As always, thanks for reading. In the spirit of the season, try to recognize and respect all the ingredients that make your life’s magical brew so special. And don’t be afraid to check the size of your bowls and spoons from time to time, just in case the brew starts to taste a little bit more bitter than it should.
Positively Yours,
Shawn