There’s wisdom in accepting what is yours — and what is not

I turned 30 on June 29, which I suppose is why this year’s Cure SMA conference was so difficult for me. You can’t pass from one decade to another without reflecting on everything you have — or haven’t — accomplished. That type of reflection is particularly difficult when surrounded by your talented, accomplished peers. It’s a little bit like swimming as a clown fish in a sea full of sharks.

I’ve written about this issue so many times throughout the history of this column that it’s starting to get boring. In the words of one of my favorite poets, Anne Boyer, self-comparison is a hole I’m fated to fall into. By the time I realize what’s going on, I’m so deep in the mindset that it takes me a couple weeks to claw my way out.

But that’s the nature of life. It’s a circle. An ouroboros: a snake eating its own tail. You think you’re over something, only to realize that, no, you really aren’t. So here I am again, wearing grooves into the surface of my psyche, retreading what has become an oft-visited path of mine.

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This column is hard for me to write because, in general, the conference is a wonderful, nurturing environment. There’s nothing more healing as a chronically ill person than a weekend of being surrounded by people who share your illness. I hesitate to say this because I don’t want to make the conference out to be something it’s not. But I struggle with it all the same:

Comparing myself with other members of the community.

Feeling like a failure because I haven’t accomplished half of what my peers have.

When I’m home, embroiled in the mundanity of my everyday life, I don’t feel so self-conscious. My life is what it is. There’s the good, there’s the bad, and there’s the wisdom of knowing what’s yours to change. Isn’t that how that quote goes?

Things are different at the conference. Part of it, I’m sure, is the Disney magic; not even my parents are immune to the smell of coconut and the far-off, twinkling melodies. When you’re at Disneyland, it really does feel like anything is possible.

But it’s not Disney at all. It’s the SMA community. It feels like anything is possible because for a brief, shining weekend, you’re surrounded by people who intimately understand the blessings and horrors of rare disease. There’s no judgment at the conference, only empathy and understanding. We do what we can to lift each other up. In that way, life becomes that much easier; we’re no longer alone.

Unfortunately, the conference doesn’t last forever. We return home only to reacquaint ourselves with our struggles in life. While the sense of community persists, it’s not quite as strong; not many of us have a collective of 3,000 SMA patients living next door.

Figuring out what is mine

I’ve struggled with this issue ever since I started attending the conference in 2019. There’s so much I want to accomplish in life. So much I desire for myself. At the conference, it all seems within reach, surrounded as I am by pillars in the community who’ve paved the way. Then I return home and am accosted by all the things I was able to forget for one glorious weekend.

The ableism, external and internal.

The self-loathing, however subtle it is.

The powers and principalities that would keep us disenfranchised and at the mercy of others.

It’s hard enough to exist in the world; it’s even harder as a multiply marginalized individual. There’s so much working against you at any given time. What is there to do but feel inadequate when confronted with the success stories you’ve been unable to imitate?

If you’re anything like me, you feel like there must be something wrong with you. Why else are you struggling where others thrive? Your personality just isn’t quite right, or maybe you won the genetic lottery of an SMA type that results in less energy and overall a more visible disability. Maybe you are, to put it melodramatically, cursed.

My past two books have centered on choices. What do you do when it feels like the world is against you, when the proverbial chips are down? We’re taught from a young age that anything is possible, that we can be whatever we want if only we put our minds to it. There’s truth to that, but there’s folly, too. Some things are not ours to accomplish. It’s not fair, but it is the way of things. There’s wisdom in accepting that — in knowing what is yours.

The question, then, is what is mine?

Maybe my 30s are when I’ll finally figure that out.

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.