Learning the Importance of the SMA Community

I wasn’t sure what to expect from this year’s Cure SMA Conference. I’d attended only once before, but I was too young to care about anything except for the service dog that I met and for which I subsequently longed. I knew there’d be workshops and meetups and all kinds of networking, but beyond that, I hadn’t the faintest. For all I knew, Mickey and Minnie would accost me in the hall and insist on a hug — something that happened to me countless times at Disney World, to my dismay.

As it turns out, I was accosted by a face character. It happened to be one from “Star Wars.” Chewbacca caught sight of me and, of course, would not relent until I hugged him. Right around that time, one of the Resistance agents came over and recruited me, giving me the codename “Pink Cat” — the color of my baseball hat and my favorite animal. My parents laughed to the point of breathlessness.

What I wasn’t expecting was the sense of community. My fellow columnist, Kevin Schaefer, told me that everyone at the conference would more or less “get it.” Fatigue? A normal occurrence. Speech impairments? Not a big deal. Whenever someone addressed me, they spoke to me — not my parents or able-bodied friends — but me. And whenever someone struggled to hear me, they said it outright: “I’m sorry, it’s just so loud in here,” to which I nodded, because it’s rarely quiet these days. They didn’t pretend or smile awkwardly or sneak a glance at their phone.

It was what it was: normal.

I honestly didn’t meet that many people. By the time the conference started, we were on day seven of our trip. I was tired, stressed, and moderately anxious. I bounced from hotel to hotel, switching between group chats and text messages and emails buried in my inbox. I could barely catch my breath. All of which I’d expected! But I struggle to be social on a good day, so it took every last ounce of energy to keep myself afloat.

But I met the people I wanted to: Kevin; Brad Dell, the head of columns at Bionews Services; an old friend, who I met through “Star Wars: The Old Republic,” my favorite massively multiplayer online role-playing game around 2014; and more. It was my first conference in years, so I merely dipped in my toe. And I’m perfectly all right with that! One thing at a time.

I stayed at a distance, but I still got a lot out of the conference. I met someone who manages all 11 of her caregivers! Dad and I looked at each other in disbelief. Eleven? How does someone find that many, let alone manage them all? That’s so many balls to juggle. I have a headache just thinking about it.

And then there were people who live independently — who traveled with friends to the conference, which is to say without their parents. People who are doing what I’ve wanted to do for years. And maybe it’s not perfect. Caregivers quit, wheelchairs fall out of airplanes, and apartments have their drawbacks, I’m sure. But they’re doing it. They’re doing it! And in doing it, they’re showing the rest of us that we can do it, too.

That’s what it means to be part of a community. You do life together. It’s messy and intercontinental, and like everything else in this world, imperfect. But sometimes, something clicks — you figure out how to manage 11 caregivers at once, and you share that knowledge with people in your network so that they can benefit from it, pass it on, and broaden the circle. If the circle gets big enough, you may find yourself holding conferences at Disneyland.

There are dozens of columns I could write about the SMA community and why it took me so long to get involved. Maybe someday, I will. But for right now, I want to say that I’m grateful. Sometimes all that you need is someone to take you by the hand and show you what’s possible.

Just in case you need to hear it (because I certainly do): Anything is possible. Don’t give up, OK?

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