Finding a temporary escape from the challenges of living with SMA

With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body.

OK, maybe that’s a bit dramatic. But the healing powers of the beach and its background noises are something I’ll never take for granted. After all, one of my life’s greatest mysteries is how my oxygen always improves after a day spent in the salty air or how all my muscles seem to relax after being tense for so long. So on this day, I came to the beach with one goal: to let my body and soul recharge.

Living with spinal muscular atrophy (SMA) requires so much time and energy spent on my physical needs that it often takes a toll on my mental health. There’s a delicate balance of tending to my health woes without letting anxiety and depression take the reins. Lately, I’ve felt off-kilter. Appointments and procedures have consumed my days, and there’s seemingly no end in sight. I’m tired, defeated, and desperately wish to hit a pause button on all that’s ahead.

Alas, life isn’t that easy. The beach is the closest thing I have to hitting pause for a while.

Recommended Reading

September 9, 2024 News by Lindsey Shapiro, PhD

Spinraza treatment improves motor function in older SMA patients

Time to rest and recharge

Fortunately, not only am I within driving distance of the beach, but I’m also lucky enough to have family who live there. On this day, my parents and I stayed with my aunt and uncle for the weekend. Their house is nestled on a small island off of a fisherman’s village and within walking distance of the beach. It’s forever my happy place.

Upon my arrival at their home, my aunt immediately asked me about my recent health issues. Though I appreciated her concern because I knew it came from a place of love, I immediately stopped her. Half-jokingly, I told her I came to the island to live in ignorant bliss for two days. Perhaps it wasn’t the best coping mechanism for all my problems, but she laughed and said she loved me.

While on island time, my ignorant bliss was meant to serve as a temporary refuge. It allowed me to put my circumstances aside and catch my breath. Though my physical needs will always take precedence in my life, there was also value in giving myself permission to not think about my health for a while.

So that’s exactly what I did for those two days. I didn’t email my doctors, fixate on my problems, or fret about what lay ahead. I set my focus on the present moment. I compartmentalized. In doing so, I freed my body from holding on to anxiety and created space for my mental health to heal. That didn’t erase my symptoms or cure all my problems. It simply allowed me to find peace amid all the battles living with SMA brings. It temporarily paused my ongoing struggles so that I could rest and recharge.

The first morning on the beach, I felt more joy than I had in a while. As the warmth of the sun hit my face, I looked up at the sky and saw a rainbow above me. I squeezed my eyes shut and blinked a few times to refocus my vision. It was a crystal clear day, so I thought my eyes were playing tricks on me.

Nevertheless, the rainbow kept coming and going above me as the day passed. I’d never seen a rainbow like that on the beach, so I took it as a sign. The beach never fails to find ways to speak to my soul, and somehow, I could hear it whisper that everything would be OK.

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.