New medical equipment reminds me of the harsh reality of SMA
As this writer's voice grows weaker, she struggles with the loss of another ability
“OK, SMA. You win,” I thought after signing off from a virtual meeting.
I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of my recent health woes. But there I was, staring up at my ceiling and arguing with my intrusive thoughts about why this was supposed to be a good thing.
Allow me to explain.
A few weeks ago, I lost my voice. In the past year, my ability to speak has declined due to general disease progression. But since getting my NJ feeding tube, it has become increasingly difficult. I either squeak my way through a conversation sounding like a dying mouse, or my voice sounds completely normal. There’s no in between, and it’s indescribably frustrating, to say the least.
However, more recently, my voice went entirely. Though it’s difficult to determine the exact cause of this, it is likely the result of irritation and swelling from my frequent NJ tube changes. For a week, I battled between staying much quieter and continuing to strain my voice, because speaking is my main form of communicating my needs. I knew there was a simple solution all along — I just didn’t want to face it.
I struggled with my voice for a week before conceding the fact that I needed to find a way to make my voice heard. And all week, I was fully aware that there was a voice amplifier on my desk — a viable solution that would have saved me a lot of frustration and strain.
I bought the amplifier last summer for outdoor gatherings and used it a few times in group settings. There are many external noises outside, and using it allowed me to participate in conversations without having to repeat myself multiple times. Truly, it was a great find. It also left many people wondering why I didn’t use it every time I had company, regardless of whether we were indoors or outdoors.
The short answer is that I am one stubborn person. But the long, more complicated explanation is that I don’t like using medical equipment unless I have no other choice. It feels embarrassing to write this, only because I know how foolish it sounds, but my skewed way of thinking tells me that getting new equipment means SMA is winning. It means one less ability I can perform independently. I’ve been trying to break this vicious thought cycle for a long time.
It might not make sense to most people. In fact, it doesn’t make sense to me sometimes. After all, medical equipment is supposed to help me. It’s supposed to make my life easier. I love my wheelchair and BiPAP machine, two tools I use every single day. So why am I open to some and not others?
This is a question I’m still exploring, but I suspect it comes down to finding acceptance. I don’t want my voice to get weaker. I want to be able to talk at the same decibel I always have. Sure, my voice has always been weak. But after managing so well for so many years, I don’t want to adapt to new equipment. I don’t want to admit I’m weaker. I don’t want to accept my new reality.
Even though muscle weakness is the name of the game with SMA, losing abilities still stings. Having to use new equipment still reminds me of what I’ve lost.
While I don’t know if my strained voice is permanent, using my voice amplifier during my meeting (and thereafter) was a stark reminder of what my future might hold. Yes, it was the answer to my problem, and I’m thankful to have solutions that improve my quality of life. But it doesn’t take away from the harsh reality that comes with living with a progressive neuromuscular disease.
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.