My Spark is Music, Not SMA

This year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life as a musician is one way she defines herself. In her article, she talks about her return to music and her work as a vocal teacher.

Living with a terminal disease as a child is a heavy burden. It’s especially hard to be told all your life that you will be unable to follow your dreams because your health would decline to the point that it would be an impossibility. My spark was seemingly put out before I could even burn bright.

I'm from a musical family

I was born into a musical family; everyone sang or played an instrument or both. Nights were spent sitting around listening to my mother play the accordion or my dad play the piano. Music was seemingly in my blood, and it was my dream to be able to perform professionally when I grew up. 

Difficulties with my hands

In early band, I played the clarinet until my hands failed in junior-high school and I turned to chorale and vocal performance. And while my hands failing was a hard thing, my lungs had been strong enough to continue to sing throughout high school. Unfortunately, spinal muscular atrophy robs those who live with it of healthy lung function. In my case, my spine had to be fused which caused my ribcage to compress on my lungs. 

Now lung problems

My lungs are shaped strangely and my inhalation since my ribcage cannot easily expand because of the spinal fusion and subsequent tendon tightening in my intercostals because of lack of movement. I was told by countless doctors that I should find another dream to pursue because I would not be able to sing professionally because of my lung issues.

When I graduated high school, I went to college and got my degree in my second love, graphic arts. I couldn’t find gainful employment at the time in my chosen field, so I substitute taught for a time at the local high school. 

Returning to my first love: music

I was lucky enough to take over a long-term substitute position for a music teacher and it kindled my fire once again for my true love: Music. And even though I couldn’t perform professionally, or so said the professionals, being a teacher for a short time made me realize I wanted more than anything to become a music teacher.

Rather than pursue music then though, I followed my other dreams. I became a wife and bought a house. I spent years building a life for myself and enjoying what years I had left, since doctors were always astute to point out that I was doing amazingly ‘for someone who had a progressive disease.’ Though after I became an adult, they stopped giving me ‘expiration dates’ of how long I was expected to survive, I still had that huge cloud over my head of the inevitable.

After living life the only way I knew, at the time, I divorced and moved on with my life. At first, I struggled with depression and had a hard time finding myself and my direction. Things felt very hopeless. 

If not for SMA, what would you do?

Then I was asked one of the most life changing questions I had ever had: If SMA was not an issue and there was nothing holding you back, what would you want to do with life. 

It was an easy answer: I wanted to teach music

I had my answer and my spark back! 

Getting my music degree

At the age of 35, I went back to college for a vocal music degree. It was a hard degree and most likely harder because of my lung limitations, but I decided that even if I could not perform or teach in the future, I was done depriving myself of my dreams because of fear of my disease. 

My professors were amazing and very accommodating to my specific needs. We all learned together how someone with limited jaw movement, limited lung capacity and no mobility could sing in recitals and operas. 

With the help of friends, family, my caregiver and a lot of hard work, I received my BA in Vocal Music in 2020.