I always get something out of my therapy sessions. Sometimes it’s a word or a phrase. I’ll never forget when my therapist told me that, even in the midst of an attack, I won’t be anxious forever. I don’t struggle as much with anxiety these days, but whenever I’m knocked down by a particularly intense wave, I find myself returning to that simple piece of wisdom. Sometimes it’s just peace, a quiet belief that everything is going to be all right.
I was talking to my therapist this week about my not-so-successful trip to the Renaissance Festival a few weeks back. I’ve moved on, I think. Not everything goes the way we plan it, and, besides, I’ve been too busy with schoolwork to really think about social mishaps. But I still wanted to talk with her about it, because I’ve realized that experiences like that — while certainly not new or surprising — are still traumatic. It still takes me a week or two to get my head screwed back on right.
I explained what happened, and I told her why I felt so awful about it. I also told her about my trip to Indianapolis, and how that whole affair showed me just how much I hate being abnormal. Or, I guess, how much I hate being not normal; how, after all this time, I still desperately want to somehow be considered normal.
I’ve written a bit about my journey toward disability pride, how I recently went through a time of great exploration and, through that exploration, acceptance. I love who I am. I love being disabled, and I love all the awkward, humiliating, bizarre and unique things that happen to me because of my SMA. But I believe it’s important to admit that I’m not always proud. I’m not always grateful for my disability, and I’m not always content as a disabled cyborg crip. I have bad days, too. On good days, I’m happy and fulfilled. But on bad days …
My trip to the Renaissance Festival was a bad day. It left me feeling small and utterly, helplessly abnormal. Like a sore thumb of society, red and crooked.
I told my therapist that. And she said — word-for-word, I promise you — “Well, that’s probably because you’re not normal.”
I swallowed my defensive What? and let her explain. She went on to say that, when I’m at home, I probably do feel normal, because I’m essentially on my home turf. (What they call “favored terrain” in Dungeons & Dragons, by the way.)
But when my friends see me in Indianapolis or at the Renaissance Festival or even in my parents’ basement, hair thrown up in my everyday D&D-proof ponytail, they don’t distinguish between normal and abnormal, comfortable or uncomfortable. They just see me.
“They don’t see normal,” she told me. “They see ‘Brie’s normal.’”
And I laughed, because I knew I’d been given another one of those elusive nuggets of proverb.
It’s easy to forget — especially on bad days — that normal is a farce. A construct. It doesn’t exist anywhere but in people’s minds. I’m not normal, but no one is normal, because we’re all different in sundry delightful ways. Normal, then, is not the natural or expected or even average state of being; abnormal is. Hard to remember in the throbbing heart of an anxiety attack, but the more you think about it, the easier it gets to dredge up from the depths.
Belief in normality is a pervasive thing, so I don’t go around calling people abnormal. And, on bad days, I still fall prey to that age-old desire — I want to be normal. I used to pray, curled like a half-moon around my cat in the middle of the night. Please just let me be like everyone else. But now I focus on something less alienating, something that’s actually achievable: Brie’s normal.
Right now, that looks like schoolwork, Dungeons & Dragons, caramel M&Ms, and my best friend. In a few months, it’ll be graduate school, tattoos, “Star Wars” and the holidays. My normal is an ever-changing beast, and so I’ll find it easier to tame, because those shifts in presentation are inextricable to who I am. My normal is part of me.
I hope this helps you as much as it helped me.
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.