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Accepting the loss of life's joys while living with SMA
“Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the first 18 years of my life, my disease’s progression was also quite slow. I have, however, experienced a significant decline in the last few years.” – Ryan Berhar
Read what else our columnist Ryan has to say about living with SMA and how he came to terms with not being able to do some of his favorite things here: “Coming to Grips with the Reality of Lost Joy”
Has SMA prevented you from doing the things you enjoy? What was your favorite thing to do that you can’t do now?
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2 Replies
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Looking back there are lots of things I used to be able to do but can no longer do. It’s not in my nature to dwell on that. I prefer to focus on things I can do. Have to admit though, since Spinraza came out it’s really brought those losses to the forefront. What if I could do this again? What if I could do that again? Even though I try not to have expectations those thoughts are in the back of my mind. Probably the biggest loss for me was my swallow. You never realize how many food commercials there are until you can’t eat. Will I get my swallow back? I don’t know. I do “cheat” with actual food on occasion. All the extra things I have to consider when I do so does take some of the fun out of it, but I’m not ready to never eat a taco again. Of course it’s a process as it takes me longer because I can barely reach my mouth. I have to chew chew chew to break it down. Plus part of it might still end up on my lap because let’s face it tacos are messy. Then there’s the whole aspiration risk…sigh. Like most things I guess, I’ll do what I can till I can’t. Odly enough I still enjoy watching the Food Network with my mom when I visit. I make sure she’s DVR’d The Great Food Truck Race. Still amazes me what they can whip together in the back of a truck.
When I’ve found I can’t do something anymore I enjoy teaching others how to do what I loved to do, or exposing them to things I wish I could do. For example, I can’t really get out fishing anymore, but I can lend my pole to the neighbor kid and give him a few pointers. When he catches the big one I can feel like I was a part of it.
Is there a way you still enjoy things you can’t do anymore? Have you found a way to adapt so you still can?
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I too try not to dwell on those things, and I’ve learned to adapt. For me it’s a little different, because for the longest time I struggled to cope with my deteriorating arm strength, but ever since I got my JACO robotic arm I feel great. I use that for eating, drinking, picking things up, moving objects around on my tray, etc. There are things I can do with that device that I was never able to do previously.
The best advice I have for other SMA folks who struggle with losing the ability to do certain tasks is to focus on what they can do, and also to look for technologies that can improve your daily life. For my JACO arm, we were able to raise all the money through GoFundMe, so there are options when insurance doesn’t cover the tools you need.
I’m fortunate enough not to have dealt with swallowing issues. The majority of my deterioration has been pretty much restricted to losing a lot of upper-body strength. I can imagine that would be rough, especially because I love food. But again, we still have a choice in terms of how we respond to our physical limits. Also, just talking about it helps, and I always tell SMA people who struggle mentally and emotionally that there’s no shame in therapy. It may not be the ultimate solution, but it can help.
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