A recent trip to the beach prompts me to reassess myself and my health
In life with SMA, any increase in strength is a cause for celebration
Some of life’s best lessons come from the beach. Don’t you agree? Maybe it’s because I’m a solar-powered soul, but the beach is my happy place. It’s where I go when I need to recharge and clear my head. There’s something about the sound of waves crashing onto the shore that helps me recenter and gain clarity about certain situations or problems in my life. And sometimes, I receive clarity I never saw coming.
New Englanders aren’t accustomed to beach days in April, but Mother Nature had a surprise up her sleeve this year: 48 hours of gorgeous, hot, summerlike weather. So naturally, to beat the heat, my family headed down to the coast for a rare April beach trip.
I remember my last beach trip of 2022 perfectly. Perhaps it’s because it was the last time I saw my grandma before her passing. Or maybe it’s because I can remember how my body felt physically. At the time, I was five months post-hospitalization after getting my NJ tube placed. I was weaker than I’d ever been. My voice was so soft that my mom couldn’t hear me ask for help on the beach; instead, she had to make frequent eye contact with me to ensure I didn’t need her assistance.
Aside from the difficulties with my voice, I could barely sit up in my wheelchair. I always try to snap a quick picture in my happy place, but what that day’s picture didn’t show was that I was struggling to breathe and needed to lie down. I never timed how long I could sit in my wheelchair, but I know it was never enough. My weaknesses were hard to grapple with.
But the fact of the matter was that I’d been growing weaker for a couple years. And although growing weaker is the name of the game with SMA, the reality of it doesn’t get any easier.
As a result, I found I’d been grieving my old self. I missed her. And I wanted to be more like her again. I wanted to eat on my own and not tire easily. I wanted to be able to sit in my wheelchair for hours and go on joyrides with my friends again. I wanted to not always be at the mercy of a weakening body.
Accepting this new normal hadn’t been an easy feat. In fact, it felt all-consuming and, at times, grim. It still occasionally feels this way today. But I’ve noticed a shift in these past few months — one I was too afraid to share for fear it was too good to be true. Then, my recent beach trip changed everything for me.
A new perspective
I was lying on a blanket in the sand when I called out for my mom’s help. She was about 3 feet away and facing the opposite direction. To my surprise, she heard me. She actually heard my voice above the screaming children, the crashing waves, and the obnoxious sounds of boat horns!
Toward the end of our stay, I got back in my wheelchair to take some photos and watch the boats go by. Once again, I was pleasantly surprised. I wasn’t struggling to breathe or sit up. I was more relaxed than I’d ever been.
When I got home, I cried happy tears. I’d been noticing an increase in strength for a few months but had still been comparing myself with the person I was a few years ago. That day was the first time I’d considered how much progress I’d made in the past six months, and it completely changed my perspective. Yes, I’m much weaker than I was long ago, and I need to make space to grieve that. But I deserve to celebrate how far I’ve come, too.
Living with SMA isn’t as easy as the ocean breeze. So the wins, no matter how small, are worth celebrating. I may not be where I want to be physically, but I’m far from the weakest version of myself. Perhaps it’s proper nutrition or treatments that have helped me regain some strength. Whatever it may be, I’ll get my answer at the beach.
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.