‘A Whole New World’: Celebrating the SMA community at EPCOT
Leaning head-on into the future following the Cure SMA conference
The older I get, the more easily I cry.
It never used to be that way. I didn’t cry at movies. I definitely didn’t cry when I was happy. Crying was terrible, and I hated every second of it.
Now I cry at the drop of a hat. Tense conversations have me blinking back tears, as do unassuming TV shows. “Call the Midwife” is especially a tear-jerker — the midwives will deliver a baby, the nuns will be talking about God and love and the importance of community, and I’ll be sitting there with tears streaming down my face and my heart beating outside my chest.
So there’s something poetic about the fact that I, a lifelong hater of all things that go boom, cried my eyes out during the “EPCOT Forever” fireworks show.
Late last month, my parents and I drove to Disney World for the annual Cure SMA conference. I was kind of dreading the trip. While I’ve mostly transitioned to my new wheelchair, I still struggle with driving long distances. I was also dealing with intense fatigue due to going off of Evrysdi (risdiplam) in late April. I was worried I wouldn’t be able to keep up with the demands of a two-week vacation.
I’ve written previously about the personal significance of the Cure SMA conference. Every year teaches me something new — about myself, the world, this community I’ve come to love. Every year I leave with a renewed sense of vision and hope for my future. I remember why I do what I do, and more importantly, I remember that the things I do matter.
2023 has been a hard year for me, from wheelchair transitions to health problems and career setbacks. I arrived at Disney World feeling defeated. I didn’t see a point in a lot of things: my writing, my social media, even my advocacy work. I wasn’t actually in danger of giving up — I’m too stubborn for that — but it was definitely a low point for me.
Then the conference began, and I got to see all your beautiful faces. You’d think that someone who writes for a living would be used to the idea of people reading my work, but I can tell you that it never, ever gets old. I’ve been writing this column for six years. So much of my job is hiding behind a computer screen. It’s easy to forget that, while my words belong to me, they also belong to you.
It wasn’t just the people I met. It was the panels I attended, and the conversations I had, and the pictures I took with people I’ve never met but feel connected to. That’s the power of this community. Our lives are so different, yet we have so much in common, and that binds us in incredible, important ways.
So many of you came up to me and thanked me for my writing. I was in a perpetual state of overwhelm at the time, so if I didn’t say it then, let me say it now.
Thank you for reading my words. For following along all this time. For commenting and sharing.
Thank you for letting me be a part of your life. Thank you for being a part of mine.
Fast forward to Saturday night. EPCOT was full of purple Cure SMA shirts. The sight never ceases to move me, wheelchairs zipping around like they owned the park. The Mouse might disagree, but I’m pretty sure the SMA community has a controlling share in both Disneyland and Disney World.
I hate fireworks. They’re loud and dangerous and part of the reason why I never leave home without a pair of earplugs. But I couldn’t in good conscience deny my parents. We nabbed a spot by the lake and waited for the show to begin.
I was fine until “A Whole New World” started to play. Then the tears came in earnest, because in many ways, it was a whole new world — for me, at least. The conference changed me, as did all the people I was lucky enough to encounter. For the first time in months, I felt ready to meet the future head-on.
Like they sing in the theme song for EPCOT’s Millennium Celebration, “Celebrate the Future Hand in Hand”: “The future is coming/ We’ve got to catch it if we can/ … We’ll celebrate the future hand in hand.”
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.