Putting yourself — your whole self — out there is a challenge

I prefer to write columns after everything is said and done. It’s why I didn’t tell you all about my dad’s cancer until I knew he was going to be OK. I write stories for a living, so I guess it makes sense that I’m drawn to narratives with a neat little bow. Give me a four-act structure and a meaningful denouement and I am good to go.

But life doesn’t always give you a neat little bow. Sometimes there’s no denouement. Most times it’s messy. So much of living is embracing what’s unembraceable. So in the spirit of wholehearted, joyful messiness, I’m writing this column while living it, as opposed to waiting for my heart to make sense of it all.

I’ve written several columns about disability disclosure. It’s a topic that’s important to me, largely because it’s shaped so much of who I am today. Being chronically online as someone with a disability means you’re constantly faced with the opportunity to “reveal” yourself. Every time you meet someone new, you have to decide if telling the truth is worth the risk. More often than not, it really is like ripping off a Band-Aid; the longer the wait, the harder — and more painful — it becomes.

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You’d think that, as a 30-year-old with SMA, I would’ve gotten used to the vulnerability of it. But every time I open myself up to a stranger’s judgment, I feel like I’m 13 again, alone in a lunchroom full of teenagers. It doesn’t get easier. If anything, I’d say it gets harder, with every experience building on the one that came before, until there’s no untangling your massive, complicated, illogical feelings.

It gets harder, because every time I disclose my disability, I open myself up to the possibility of heartbreak. Even when the stakes are low, the opportunity for pain is immense. You never know what to expect. Surprise? Disgust? Maybe they’ll pretend they’re fine with your SMA, only to pull back slowly over weeks, until you’re left with questions and a whole lot of guilt.

Was it something you said? Or was it just you?

It never gets easier, because every time I disclose my disability, I relive all the conversations I’ve had before, the hopes and dreams and painful, earnest, shattered longings. I wonder if things are about to change. I’m let down. It’s a cycle. Not every disclosure ends poorly — some end really, really well — but the trauma builds and builds until the thought of opening yourself up again, of letting yourself hope, is too much.

But I keep doing it. I open up, even when it hurts, even when I’m bowled over by feelings of shame. I embarrass myself. In the words of C.J. Hauser, “There is nothing more humiliating to me than my own desires.” I want to pretend I’m above it all, that I don’t want validation, that people’s judgments roll off me like rain down a windshield. I’m the dog in Ada Limón’s “The Leash,” hurtling my body toward the thing that will obliterate me. Why? Because I think I love it. Because I’m sure, without a doubt, that it loves me back.

Maybe it does. Or maybe that’s a lie I tell myself. Maybe I am the dog strangling itself on a leash.

What I know is this: I was not made to be small. I was made to be wide open, and wild, and if that means sharing the painful, earnest, shattered truth of myself with anyone who will listen, then so be it.

I can’t control how people react. But I can control myself. I can control who I trust, and when, every once in a while yanking the leash back to save myself. I want to survive forever. But there is beauty in obliteration, “the wound closing / like a rusted-over garage door,” that moment when the truth springs free and I think, Here we go again.

There’s nothing quite like that free fall. And I love it. I love not knowing how the story ends, because for a brief, hope-filled moment, anything can happen. It’s all coming up aces.

It doesn’t get easier. But I do think I love myself a little bit more each time. Sometimes I catch myself yanking on the leash. But sometimes I let the dog in me go. I let her run, and it’s beautiful, the world wide and open, the ground rising to meet her. Sometimes people surprise you. And when they don’t, well, at least there is you, your soft small self alive with desire to share her enthusiasm.

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.