Saying No to Shame, Embarrassment and Difficult Physical Activities

I’m writing this in the car again, off to Iowa for a weekend of family visits. It was a busy week, so I’m looking forward to a couple of hours of driving. For me it is a chance to catch up on things: Grad school applications, classwork. Maybe, if I’m lucky, I’ll be able to fit in some pleasure reading, but I’m not holding my breath for that.

My body is starting to protest. I keep meaning to slow down, take a breather, but life keeps getting in the way — from the stomach flu to Monstering. Now, with school underway, I can’t exactly spend my days doing nothing in the name of recuperation and balance. It seems as if every semester I go through a re-education period, in which I have to remember how to balance all the things in my life so I don’t accidentally ignore my physical needs in favor of my career, or my writing, or whatever else I find myself momentarily tempted by.

Last week, I went to a renaissance festival with a couple of friends. I went a year ago, but the weather this time was much more enjoyable; instead of gray skies and muddy strips of scraggy ground, I was met with sunshine. But, for some reason, I found it harder to get around.

Even if you’ve never been to a renaissance festival, you probably can imagine what it’s like — surrounded on all sides by grass and dirt, the occasional tree root or pothole. If you’re lucky, you might just stumble across a gravel pathway, but that luck is always short-lived, and there’s never any pavement … ever. It’s a wheelchair user’s nightmare. And, while I usually can manage just fine, I knew going into this trip that something would be different. I had a bad feeling, and I chalked it up to my newly perpetual state of fatigue. I haven’t really let myself rest since my residency, my trip to the hospital, and I’ve been suffering the results of that for weeks now.

I almost didn’t go to the festival. I almost managed to convince myself that staying home was the smart choice. I have to ration my energy, I remember telling myself. I have to keep my body from getting overworked. But I love the renaissance festival. I always have, and getting to spend time with some of my favorite people on a gorgeous day at the very cusp of fall — it doesn’t cure the depression, but it definitely makes it easier to lug around.

I went. And I barely made it 10 minutes into the day.

I don’t like it when people see that side of me — the sick side. I like to pretend I can do anything, and sometimes I even manage to persuade myself. I go on a cross-country train trip, I take a full load of classes, I amaze my respiratory specialist when I tell him all the things I juggle while simultaneously managing to stay healthy. And then I find something I can’t do, and I’m reminded how disabled I am, how sometimes the sickness still manages to control me, even when I don’t want it to. It’s humiliating. I don’t want to have to say I can’t drive around the renaissance festival anymore, because it calls attention to the things I can’t do, and not the things I can; it draws attention to the way my body fails me, which I’ve always felt should be a private grief.

It’s humiliating. But it’s part of who I am, as inextricable as the rods in my spine — the “upgrades,” as one doctor called them, that keep me straight, upright, sitting pretty.

My friends and I went our separate ways. I didn’t want to slow them down, and the very real fear of hitting a rock and losing my grip on my controller was paralyzing. My dad and I spent a few hours on our own. I drove slowly, rested often, thought a lot about internalized ableism and how hard it is to accept our weaknesses as they are, especially when they’re used to strip us of our dignity.

I can’t help but think that all this could’ve been avoided if I’d just rested. So, now I have to relearn balance. Now I have to teach myself to say no to the things that leave me worn-out and weak, that are hard and physically grueling. I have weaknesses and that’s OK. My reservoir of energy is not bottomless, and that, too, is OK.

In the meantime, I’ll keep working through my shame and embarrassment. It’s a process, as most things are. And it’ll be worth it once I reach the end.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.