You already know that for the longest time, I didn’t want friends with SMA. I was young and desperate to be seen as “cool” (whatever that means), but more than that, I was dumb. I thought that being seen with “people like me” would ruin my street cred — of which I had none — and effectively sabotage my social life.
The joke, of course, was on me. Disabled people are cool as hell. We’re funny, resilient, and more than willing to call our people out on their internalized ableism. If time travel were real, I would go back to 2009, take my chubby little face in my baby-sized hands, and say, “Please, for the love of all that is good and holy, get yourself some crip friends.”
All this to say: Thank God for the people in our lives who see us for who we truly are.
I had a head cold last week and spent a good four days in the dumps about it. It wasn’t that I hated being sick — compared to pneumonia, head colds are pretty much at the bottom of the illness food chain. No, I was grumpy because like a half-deranged toddler, I didn’t want to rest.
I knew I was sick. Just like I knew that if I didn’t rest, I would pay for it later. But I’d spent the past several weeks in a prolonged game of mental tug-of-war, wanting to focus on my next book, but struggling to get started, and waiting to hear back from the literary agents I’d queried in January, and wondering if I should start a side hustle as a freelance consultant, and so on and so forth, ad nauseam. I already felt lazy. A waste of space and all that. I didn’t want to lose another week to my dysfunctional body.
In my defense, I saw this coming a while ago. I knew I would struggle to transition from school to work; I knew I would miss the rigid schedule of deadlines and exams. Which is why I planned an entire season’s worth of activities — things that would get me out of the house and, subsequently, out of my head. It would give me the chance to catch up on all the things I’d missed during grad school, from museums to movie nights.
Then COVID-19 happened, and my plans exploded in a mushroom cloud of pandemic anxiety.
Don’t get me wrong. I’ve been doing things. But I still felt lazy. It was that niggling sense of “not enough-ness” — in a very real way, I wouldn’t be happy unless I worked myself to death.
My friend and fellow columnist Sherry and I were talking about the difference between “able-bodied lazy” and “disabled lazy.” How, more often than not, it’s our bodies preventing us from performing normal productivity. I don’t want to sit around playing video games all day. My dad can attest that laziness makes me grumpy — I thrive on meaningful tasks and the fulfillment of reaching a milestone or goal.
But SMA gets the deciding vote. As frustrating as that is, it’s so often out of our control. Beating ourselves up over things we physically cannot do is not only a waste of time but also energy.
Less than a week after my conversation with Sherry, I was telling her how lazy and useless I felt. I’d lost an entire day to my head cold, and I was stewing over what could’ve been, which is to say I was living in a fairy tale land where SMA doesn’t rule my every waking moment.
“You just said it’s OK that our bodies aren’t capable of being what we want them to be,” Sherry shot back. “You’re not lazy. Your body and mind are just asking for time to recover.”
It’s what any good friend would say. But there’s something to be said for people who share your condition. Who know the ups and downs of your disease. Who understand that when you say you’re tired, you’re talking about a bone-deep exhaustion that never goes away. It’s the isolation, the limitation, the “not enough-ness” of being disabled in an able-bodied world. It’s kicking yourself for not accomplishing everything on your to-do list, because you’re nowhere near as busy as your healthy friends, and what’s the point of you if you’re not constantly trying to prove your worth?
Sherry told me to rest, as did several others. So I did. I finished a video game, ate cookies, and watched “Lost.” I wrote a little, because I’m decidedly imperfect, but I didn’t push myself. And yes, I’m still tired. But I’m recovering. And more importantly, I’m not burned out. I want to write, not because I feel like I should but because my break reminded me just how much I love storytelling. It’s my life’s work, even if it comes in stops and starts.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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