It’s Saturday night — or “Saturrrdaaaaay night,” as one might croon in Frank Sinatra mode — and as Crankenstein showers post-workout and Muriel diligently bathes herself in the living room, pausing occasionally to stare at me, I’m on the couch trying to distract myself from bodily frustrations. For whatever reason, the levodopa hasn’t worked well today, resulting in an odd situation wherein the right side of my body is mostly fine (as usual), while the left is mummy-like in its slowness and rigidity.*
Once Crankenstein rejoins us, we’ll either watch an old B-movie (next on the agenda is 1945’s Bewitched, a noir with a split personality twist) or a couple episodes of King of the Hill. Until then, I’ve been scrolling through photos on my phone and thought this camera roll sequence summed me up better than words ever could. First we have a kitchen masterpiece: chili cheese tot casserole.
Followed by this:
You can’t tell from the side view here, but I was sick as a dog then. (You can see the progression from ‘sick’ to ‘slowly improving’ to ‘near-remission’ in this old Cranky Lesbian post.) Just a few days earlier, the two of us sat in our kitchen with a nurse who demonstrated how I was supposed to inject Humira. As she lined up four injector pens and alcohol swabs on the table — the loading dose for IBD — I excused myself to put on a pair of shorts, which seemed more polite than dropping my pants.
She and Crankenstein watched expectantly as I swabbed and injected one thigh, then another, then either side of my stomach. By then I’d lost so much weight that it was hard to pinch enough skin to use as an injection site. If the Humira didn’t work, a hospitalization would be inevitable — it had been difficult enough avoiding one in the final weeks before the wedding.
Between the weight loss and the steroids I was taking, we had no idea what size I’d be from one week to the next, which made dress logistics too complicated. I wasn’t in any shape to do serious shopping or submit to fittings; it took all of my strength just to make it through workdays. Nor did I want anyone staring at me in concern or clucking their tongues in pity. With help from Crankenstein and my sister’s girlfriend (SG), I tried to disguise my weakened state.**
I bought several pairs of thrift store pants and SG, who is quite a bit taller than me, gave me an old shirt from her closet. Crankenstein evaluated me from behind in each pair of pants and selected the one she felt gave me the best “illusion of an ass,” as she put it. SG, a magician with makeup, sportingly did what she could with my sallow complexion and hair, which was thin and dry from malnutrition. Crankenstein did her own hair and makeup and cut such a spectacular figure that my best friend said “she should be standing on Mount Olympus.”
It was unlike any wedding experience I’d ever envisioned for myself, and I’m sure it wasn’t what Crankenstein had in mind, either; I might as well have had an IV pole as my maid of honor. But it was also kind of fitting — our union’s always gone heavier on the latter half of “for better or worse,” if only due to our respective health challenges.^ This is exemplified by another of our Saturday night rituals, in which Crankenstein uses a syringe and vial to measure and then inject me with methotrexate.
Years ago, when she told one of her mentors about that, the woman became teary-eyed; she thought it was a moving demonstration of love and commitment. I thought of it more as another of my failures, even though I know it isn’t: your wife shouldn’t have to inject you with medication when you’re both in your thirties. Or she should only have to do so occasionally, perhaps while dressed as a sexy nurse, and not every week in perpetuity (or until your liver cries uncle).
Now add to that this Parkinson’s crap, and you’ll understand some of why I’m trying to make sense of my life here. If this is what my Saturday nights are like now — injections, waiting on tenterhooks after taking levodopa to see if my left side will relax — what will they be like when I’m 50? Sixty? Dare I ask 70? I’ll probably still find fulfillment in old movies and chili cheese tots (assuming I can swallow) and jokes about propane and propane accessories, and I’ll probably still sing along with the Chairman of the Board. But I wish I related to September of My Years a little less than I have lately.
* Even the left side of my mouth is tight as a drum, if you can imagine how weird that is, while the right side feels normal.
** We were moderately successful, but from certain angles you could tell something was wrong. My arm in this photo is an example of that.
^ This seems like the appropriate place to mention that I was concerned the weight loss might trigger Crankenstein’s eating disorder, but when I trepidatiously asked if she was having a hard time with it, she looked confused and was blunt in her response: “No. This is different. This is scary, because you’re not in control of it.” I still think about that a lot, because it’s such a terrifying insight into the warped thinking of ED patients. When she was at her sickest in the years before we met, she was never anywhere close to being in control. But even in recovery, there was at least some small part of her brain that didn’t see it that way.