After years of health struggles, I am growing stronger

Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight.

The past few years have been hellish, with one health battle after another. It feels like I’ve been sidelined in my own life. But despite the seemingly endless challenges I’ve faced, I experienced an unexpected shift this year that prompted me to think twice about my circumstances and my perspective on them.

I felt my body start to grow stronger.

This change came as quite a surprise. After all, my SMA is a progressive disease. When I lose the ability to do something, it should be gone for good. So when I noticed that I had more endurance and better respiratory function, I questioned my reality.

As time went on, though, my newfound strength didn’t waiver. And I began to see that I could be a patient and fight my battles while reacquainting myself with what it’s like to be a person again.

Whether I was watching an entire game of my niece playing soccer — in which she scored her first-ever goal — or attending a Taylor Swift concert, these seemingly insignificant moments symbolized great strides in my health. They were benchmarks of how far I’ve come.

Recommended Reading

August 28, 2023 News by Steve Bryson, PhD

Gains in health-related quality of life seen with Spinraza in study

Regaining independence

These moments have been incredibly taxing on my body, too. Not having the ability to do these things for almost three years means my body isn’t accustomed to this much activity. It’s learning how to balance the breakthroughs and the battles. It’s feeling bursts of energy in the midst of chronic fatigue. Although my body needs ample amounts of rest, it’s also showing up for me in ways I never thought possible again.

Recently, I decided to have my mom highlight my hair with an at-home kit, which felt like a monumental decision. The last time I dyed my hair marked the beginning of my major health issues. It was in the early days of the COVID-19 pandemic, and with nothing to do while in quarantine, I thought I’d do something fun with my mom. However, when I suddenly felt like I couldn’t breathe in my wheelchair, I never could’ve predicted what lay ahead.

With foils in my hair, my mom rushed me into the bathroom and onto my bath bed, where I could catch my breath. In a matter of seconds, I’d gone from feeling fine to struggling to breathe. It was as if I no longer had the strength to expand my lungs. The air had escaped my body so quickly that I knew I needed to lie down. Somehow, I mouthed the words to my mom, and she knew.

What I thought was a fluke was the beginning of a very difficult few years. I could no longer sit up in my wheelchair for more than 10 minutes, which led to profound grief. If I couldn’t sit in my wheelchair, what would happen to my independence? Would I be at home forever? Why didn’t anyone know what was happening?

My thoughts ran amok, so I stayed quiet about my fears. Instead, I showed everyone a happier, carefree version of me. But deep down, I grieved everything I once loved and was able to do in my wheelchair.

Three and a half years later, I stared at the hair dye box on my bureau. So much progress had been made since that day when I struggled to breathe, and so many battles had been fought. I lost some, and I won some. But most of all, I kept going. The grief may have lingered in my heart, but it was time to prove to myself that I was so far from where I’d been.

To my relief, the hair-dying process went flawlessly. Although I was exhausted from sitting up for so long, I managed to do it without any other problems. I was so happy that I nearly cried. Now when I look in the mirror, I don’t just see a girl with honey-blond highlights. I see a girl who fought hard to get to where she is.

There will always be battles for her to face on the horizon. But at least she knows she still has some fight left in her.

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.