There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than to be normal, and that meant distancing myself from people who had the same condition as me.
Things have certainly changed for me since then. I now love interacting with other SMA folks, and I just got back from the annual Cure SMA Conference. This year it took place at Disney World, and I can honestly say it’s one of the best conferences I’ve been to. With over 2,000 attendees, 450 researchers, and dozens of panels all weekend, it was a lot to digest for someone who went to one of the earliest SMA conferences back in 1997.
The first thing that struck both me and my family was the sheer number of people who came this year. Obviously, Disney is an easy way to attract families, but drawing 2,000 people was pretty amazing, as the earliest conferences attracted about 300 attendees. At Thursday night’s meet and greet, my parents and I took almost 10 minutes to find some family friends who made it out this year, as there were so many other families gathered in the ballroom. That night we spent time catching up with these friends and meeting other families, many of whom were new to the SMA community and had kids who had been recently diagnosed. This essentially placed my parents and me among the grizzled veterans who had been coping with SMA for more than two decades.
Nevertheless, it was actually a privilege to be in that category of adults who had already been through the trials and tribulations associated with SMA. As someone with a lot of experience, I was able to advise younger parents and answer questions about how SMA affects a person’s social, academic, and mental development. I was even on a panel on Sunday in which I and five other adults with SMA answered questions about what life and growing up are like with this disease. The audience had so many questions that the moderator had to cut it off at two hours.
The SMA conference used to be mostly composed of research panels, and with everything that’s gone on with the Spinraza treatment in recent months, there was more than enough medical information to discuss this year. However, the beauty of the conference is that it’s not just about updates on working toward an SMA cure, but also about how we can encourage each other to live our lives despite the obstacles we face every day. In addition to the panel on Sunday, I also went to a roundtable only for adults with SMA. We were able to share experiences with each other, ask questions about anything from independent living to dating, and simply be comforted in the presence of others who deal with the same kind of challenges daily.
As far as challenges that arose during the trip, I’d be lying if I said I wasn’t worried about transferring while I was there. After what happened in Maryland a couple of months ago, I was definitely nervous about using that annoying manual lift to get me in and out of my chair. Unfortunately, the lift my parents and I use at home isn’t portable, as it attaches to the ceiling and is firmly stationed there. Leading up to the trip, I did have anxieties about using the manual one and worried that there wouldn’t be enough space in the hotel room for my parents to maneuver it.
As it turned out, my dad was equally hesitant about using the manual lift and instead opted to physically lift me while we were on the trip. Given that my dad is a UPS driver, he still has the strength to pick me up when necessary. It’s not as easy as when I was younger and weighed significantly less, but it worked out for this vacation and we were able to avoid messing with the barely usable manual lift.
All in all, it was a great week. My family and I spent a couple of days in the parks prior to the conference, ate a ton of great food, stayed at the best resort hotel at Disney (the Grand Floridian, the same one the Tanner family stayed at in the “Full House” Disney World episode), and as with every Disney trip we watched all of the families that had no idea what they were doing and that were trying to catch their kids cutting ahead in line at the “Winnie the Pooh” ride.
Now, though, it’s back to work for me. That cynical teenager side of me is long gone, replaced by a spirit of hope, joy, and determination from here on out.
Thanks to everyone reading this for joining me on this journey.
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.
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