Regular exercise is helping me prepare for a trip to Florida
How a columnist is getting ready for this year's Cure SMA conference
It didn’t take long for my mom — who, in her own words, is not “retired” but “reliving” — to take advantage of her surplus of free time. Days after settling into the next stage of her life, she started me on a new exercise regimen: regular 15-minute walks, with a goal of getting me in shape before our trip to Orlando, Florida, at the end of June.
Of course, “getting in shape” looks different for everyone. Some want beach bodies. Others want the kind of stamina that comes with working out regularly. But for me, getting in shape means strengthening the muscles that wasted away during the winter.
Minnesota, where I live, is miserably cold. Add the germs and record-breaking snowfall, and you’ve got a wheelchair user’s worst nightmare. Why go outside when you can be warm and cozy within the comforts of your own home? For the most part, this antisocial philosophy has served me well, especially when it comes to staying healthy. But it means that every spring, I have to undergo the painful process of remembering how to be a person in the world.
It’s not that I forget; it’s that my body forgets. My hands forget how to drive my wheelchair. My muscles forget how to withstand a day on the town. It usually takes several outings — or in this case, walks — for me to remember everything I forgot during the cold, winter months.
Normally, this shift isn’t a big deal. But my new wheelchair complicates things. There are certain aspects of this chair that I’m still getting used to. Just because I can sit in it all day without incident doesn’t mean I can navigate through a writhing Disney World crowd without running someone’s foot over.
Hence the walking. There aren’t many writhing crowds in the suburbs, but there are plenty of obstacles that simulate an amusement park. A pothole becomes a kid in the middle of the walkway with no idea where their parents are. An oncoming car becomes a face character I need to avoid at all costs (I may have a phobia of face characters). With each walk, I become a little stronger — and a little more excited for our upcoming trip.
This year’s Cure SMA conference is going to look a little different. For one thing, we’re going to Florida, not California. (Epcot, here we come!) And for another, I have a completely new chair, with a nifty attendant control feature that will make Disney World easier to navigate. This trip is also our last vacation before we get the accessible RV of our dreams. It is, in many ways, a trip of firsts.
It’s hard not to feel anxious before a vacation, especially when you live with a complex disease like SMA. When I was young, a trip to Orlando landed me in the emergency room with a respiratory infection. I survived, obviously, but you can imagine the wrench that threw into our vacation plans. You can prepare all you want, but some things, you simply can’t predict — like a particularly nasty respiratory bug that persisted even after a round of antibiotics.
But you do what you can. Isn’t that the way of things? You do what you can and hope it’s enough. Things rarely go as planned, so you focus on what you can control and let go of everything else.
So I take my little walks. I check and double-check my packing list because there are some things I simply cannot live without, like my velvet pink scrunchie. I hug my cat, because I will miss her terribly, and then I sail off into the sunset, Florida-bound and in search of magic.
It’s that time of year again! If you’re attending this year’s Cure SMA conference, drop me a line — I’d love to meet up! I’ll also be participating in the “How to Build Your Presence and Advocate Through Writing & Social Media” panel alongside our beloved Kevin Schaefer. Join us at 10:45 a.m. July 1 in Asbury Hall C and D at the Yacht & Beach Club Resort Convention Center.
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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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