If you know me irl (internet slang!!!) or are a regular reader of this blog, you’re probably aware that I’m someone who places great value on controlling every aspect of my life I possibly can.
My ability to stick to rigid, self-imposed rules is, as I’ve learned, a power that I can use for good or for bad.
For example, I have a notebook in which I maintain and update daily, weekly, and monthly to-do lists; I set arbitrary goals and push myself to achieve them, sometimes to my detriment, even though I’m the only person keeping me accountable to them; I’m rarely late for appointments or social engagements (and, in fact, am often embarrassingly early and need to loiter a block or two from a friend’s house until it’s a reasonable time to arrive); I spend way, way too much time editing stuff; and I have a bedtime routine about which I’m not at all flexible, except in the most extraordinary of circumstances.
Oh, and I have OCD and a restrictive eating disorder.
As it turns out, an intense need to be in control isn’t super compatible with intractable epilepsy.
I know I’ve come back to this again and again, but it bears repeating, so I will: one of the aspects of seizures and postictal psychosis that I find most challenging is how vulnerable, how out of control, they make me. The links between my epilepsy, postictal psychosis, and eating disorder are complex, and control is just one piece of a puzzle made mostly of misfiring neurons and chemical stuff happening in my brain. It is, nonetheless, a key one.
The psychologist I’ve been seeing here at the hospital has started having me identify things over which I do have some control. I’m supposed to do this on a daily basis, and, being the A+ patient I am, I always manage to find something to write. I’ll admit that I haven’t had the greatest attitude about this exercise, likely because I usually see it as kind of demoralizing. Most of the time, after all, I end up with stuff such as “I’m in control of what books I choose to read” or “I can decide what I wear when I get dressed in the morning.” Who cares if I can control how frequently I opt to don sweatpants (basically all the time) if I can’t control whether or not I have a seizure and am injured during it? When I’m feeling a little more generous toward myself, though, I can recognize the bigger stuff.
Because I am, as it turns out, constantly making decisions, asserting control, in ways that truly count. I’m in control of whether or not I engage in my treatment (and I do, even when it’s hard). Consuming eighteen Ketocals a day—yes, my meal plan has increased—is a choice I actively make with every delicious supplemental beverage I drink. I’m in control of what kind of a partner I am to my husband. I can choose the activities I do to bring meaning to my life.
I suppose I can also choose to think differently about control. If nothing more, having the control necessary to wear sweatpants and novelty T-shirts pretty much every day does deserve true appreciation.
One thought on “Seizures, Supplements, and Sweatpants (Control!)”
❤️ This is a good one.