Yesterday was my fourth Ocrevus infusion. My new infusion center follows a super cautious protocol, which means I was there for five mind- and butt-numbing hours, and emerging was a huge relief. As I cheerfully scooted toward the elevator bank, a young-ish (certainly younger than I) woman emerged with a labored, staccato walk aided by a walker and ankle braces. We smiled at each other as best we could over our masks, and she gestured to my scooter.
“I need one of those!”
“It’s made things so much easier. I really recommend it.”
“See if you can get insurance to pay for it. I’m sorry, er, do you have MS?’”
“No, I was shot in the spine. One of the 5% who make it.”
“I’m sorry… I just assumed because your braces are similar.”
“What do you have?”
“Multiple Sclerosis. 18 years now.”
“I guess God wasn’t done with either of us yet!”
“Guess not. Take care.”
It’s disability pride month, and I have been struggling to make sense of my feelings about it. Am I disabled? Undeniably. But I also devote a lot of time and effort towards being less disabled. My moderate exercise goals of 2 hours of Pilates a week and 1500 steps a day aren’t for funsies. They’re for keeping further disability at bay. I made a huge career move in May that was very nearly eclipsed by my delight at my neurologist announcing that I was stronger than the last time I saw him. I definitely have told more folks about my physical improvement than my expanding coaching business.
After spending so much time celebrating my steps toward being less disabled, celebrating disability pride feels a bit like a lesbian checking herself into a gay conversion camp but then sneaking out to go to As You Are. Hiding her rainbow cake and eating it too.
My exchange with the gunshot survivor gave me some perspective, though. Not the trite, “oh, it could be worse” sort of perspective. Rather, talking to her reminded me that, like it or not, I am part of a tribe. And while I hate every small ability that slips away, I love being on a team with the elderly and the injured and the born-this-ways, exchanging knowing glances and kind words. I love the hell out of continuing to live my life and encouraging others to do so in the face of frustration after frustration. I love that I’ve surrounded myself with brilliant friends who do things like buy a “stair chair” so I can attend parties at their no-bathroom-on-the-main-floor home. I love every time I share a story and someone says “I never thought of it that way.”
So happy disability pride month! Here’s to celebrating amid the messiness and perhaps even celebrating the messiness itself.
3 thoughts on “Bewitched, Bothered, and Disabled: In Which I Find Some Pride”
Every time I read your stories, I am comforted to know that you are in the world that I inhabit. Please, continue! You are a treasure to me.
Thank you, dear Ann. You most certainly are in my tribe, and I am so glad you are.
Everyday I think of you and understand and think differently about life in general.