A Wedding Has Me Reflecting on the Trajectory of My Life With SMA

I rarely ever cry.

That’s a lie. I cry an average amount. I’m especially sensitive in moments of stress or tension. I’ve been known to burst into tears at the first sign of confrontation, which, as I’m sure you can imagine, is less than great for my reputation.

But I don’t cry easily. Certain scenes will move me to tears, like the final moments of “The Lord of the Rings: The Return of the King.” But for someone who feels deeply about everything from climate change to the latest “Star Wars” rumor, I feel as though I should cry more than I do. I’m greatly affected by the smallest, most mundane things, yet I struggle to cry.

Weddings are the exception. I’m pretty much guaranteed to cry at every wedding I attend. When my very first caregiver, Katelyn, got married, I cried like a baby, and not just because I was her bridesmaid. I’d known her partner for years and had seen firsthand the life they’d built together. When Katelyn told me she was getting married, I was ecstatic, because I’d been waiting for the news since I met her.

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A few weeks ago, I mentioned a wedding that ended in my dad getting COVID-19. But now that he has recovered (for which I am stupidly grateful), I wanted to write something about the event itself, because it hit me harder than expected.

I’ve written previously about feeling left out. Your 20s are difficult enough as is. Add a disability and mental illness to the mix, and you’ve got yourself a complex in the making. All around me, people are getting engaged, starting families, or paying down debt. Their lives are starting to reflect the adulthood we’d longed for as gangly teenagers. And while part of me is in step with them — I, too, am paying down debt — part of me isn’t.

My life isn’t “normal.” My life will never be “normal.” As much as I want to achieve the milestones of adulthood, things like marriage and starting a family are largely inconceivable for me. And that’s a hard pill to swallow.

(This isn’t to say that folks with SMA can’t achieve those milestones. People in our community are doing what was once deemed impossible, from having kids to living independently. Their success is so very important. But I also want to acknowledge that circumstances can and do differ. What is possible for someone might be unlikely for someone else, and that’s OK.)

So I get ready for the wedding. I sit near the back, because I don’t want to get in the way. I greet extended family members, thinking all the while how strange it is to be together again after years of social distancing. When my uncle gathers the crowd’s attention, I smile, because he is every bit the groom’s father, fumbling with the microphone in his jacket pocket.

The world keeps spinning. Isn’t that what they say? The older I get, the more I realize how true it is. The world keeps spinning. Cousins get married, have kids, retire. Life is ever in flux, and in moments like this, surrounded by people in sweat-slick formalwear, it becomes even more apparent.

The world keeps spinning, yet I feel stuck.

The wedding party makes their entrance amid laughter and cheers. Again I think how strange it is — how wonderful that, after everything we’ve been through, we can celebrate like this, defiant in the face of ongoing tragedy.

Then my cousin sees his bride, and I start to cry.

They’re tears of happiness, of course — for my cousin and his family, this interwoven tangle of blood and kinship. But they’re also tears of grief.

I want this for myself. The wedding, yes, but the joy, too. I want my father in a suit and tie. I want my partner’s voice to break for love of me. I want to share the good news, to declare with tears in my eyes that the world keeps spinning, that I’m growing older, that the life I once longed for is now mine to claim.

But it’s not my wedding. So I push it down, paste on a smile. The next day, I tell my best friend how sad I am, how much I want things to change. She sits with me in my grief. I let myself be held.

Later, when relatives ask what’s new with me, I hold my head high. The world keeps spinning, and I spin with it.

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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.