I’ve learned to savor moments of solitude in life with SMA
In June, my parents and I huddled into our accessible van to head to the annual Cure SMA conference in Orlando, Florida. It’s always my most anticipated time of the year, filled with seeing friends, meeting new people, and spending late nights at the hotel lounge and by the pool. We swap stories, roast each other with warped jokes, and relish in our shared experiences as members of the SMA community. The conference is always a massive adrenaline rush. Even as an extrovert, I use up all my social energy during those few days.
This year, I made sure to carve out pockets of time for solitude. Though I had a packed calendar with meetings, panels, dinners with friends, and random run-ins, I knew I needed time to recharge and rest my voice.
One way I managed this was by taking the bus to Downtown Disney independently. Disney’s bus transportation system worked out perfectly for me. I could wait at the stop by my hotel, drive my wheelchair onto the bus ramp, and allow the driver to strap me in. If at any point my hand slipped or I needed additional help, the driver or another passenger could provide assistance. I could then enjoy a 20-30-minute ride without having to socialize and simply collect my thoughts while looking out the window.
Embracing time to myself
I’ve written numerous times about how living with SMA requires the ability to adapt, but it’s also about balance. As a Disabled person, I have to remind myself to slow down when my body tells me that I’m pushing myself beyond my limitations. This is especially important when I’m on vacation and using up more energy than I do at home.
These days, I embrace time to myself. Friends and I joke about how much we relate to a meme about our collective “relief of missing out,” or ROMO. Even when I’m out, I still make room for solitude. In the past few years, I’ve gone to more movies and dinners by myself than I ever did when I was younger, and these have become some of my favorite outings.
This is a stark contrast to how much I feared and hated missing out on social opportunities as a kid. Growing up with SMA, I experienced an excess of isolation. I missed out on parties and gatherings that were inaccessible, spent months at a time in hospitals and sick at home, and I even had to skip the Muscular Dystrophy Association’s summer camp one year when I broke my leg. Needless to say, I anticipated every opportunity to spend time with people.
My perspective shifted as an adult, particularly in college as I began working with paid caregivers. I went from experiencing prolonged periods of isolation to having people with me around the clock. Even when I wasn’t focused on schoolwork or other priorities, I was managing a team of people to meet my needs, and I rarely had a moment to myself.
To this day, having caregivers boosts my level of independence and takes much of the responsibility of my daily needs away from my parents. I love the relationships I have with these people, and the ways we help each other out. Still, the thing most people don’t realize is that as grateful as I am for each individual who has ever been on my team, managing caregivers still requires large quantities of my mental and emotional energy.
Through all of these experiences, I’ve learned to treasure time by myself. I loved seeing the new Spider-Man movie multiple times with friends, but I also enjoyed watching films this summer on the big screen without anyone else. I treasure community and relationships, but I also savor moments of solitude while living with SMA.
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.
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