As Rare Disease Day approaches on Feb. 28, many in the disability community are seizing the opportunity to share about their diseases and the many aspects of being rare. Having an entire day dedicated to this purpose is wonderful, but let’s not limit these discussions to just one day.
While some people prefer not to discuss their disability, I am generally an open book when it comes to this topic. I appreciate inquisitive questions, and I enjoy opportunities to have conversations about something that is such an important part of my life. It’s important to be respectful of those who don’t wish to discuss their disability, but I personally welcome questions.
Today, I’m going to share a few of the questions I’m frequently asked about my disability and how I typically answer them.
Why are you in a wheelchair?
I am probably asked this question more than any other, and my response varies depending on who I’m talking to.
When I’m talking to a child, I use a simple, nonmedical explanation. I point out that their muscles must be very strong to be able to stand, walk, and run, and I tell them that my muscles are not strong enough to do this. This comparison makes it easier for kids to understand why I rely on my wheelchair for mobility instead of my legs, and it often results in an amusing demonstration of flexing to show off their muscles.
With adults, my explanation consists of a more detailed description of what causes SMA. I usually say that it’s a genetic neuromuscular disease that prevents the body from creating the protein needed to grow new muscle. The name of this protein and the specifics of how it should be created are facts that I can recite as easily as my own name, but I don’t often delve into this complex process with strangers unless I’m asked further questions. While I enjoy learning the scientific aspects of SMA, I don’t want to bore those who might not be as interested in it.
Do you mind being disabled?
The answer to this question may come as a surprise to some. No, I don’t mind. Despite the numerous challenges that come with having SMA, I still have a full and meaningful life. That doesn’t mean I never get frustrated by things like fatigue, wheelchair malfunctions, or chest congestion, but when I choose to focus on the positives, I can see that my life is full of blessings and that there are even some good things that have resulted from having SMA.
I have connected with so many people that I may not have otherwise met. I have the opportunity to work at my dream job alongside outstanding individuals here at BioNews, the parent company of this site. Valuable life lessons such as finding joy in every circumstance and being mindful not to take things for granted are emphasized by my disability. For each of these things, I am thankful.
I don’t say any of this to dismiss or diminish the struggles that SMA causes. The adversities that my family and I face daily are undoubtedly real and have a noticeable impact on our lives. But to me, they are far outweighed and outnumbered by abundant blessings, and that is why I don’t mind being disabled.
Are you in pain?
Thankfully, I am not. Except for occasional headaches and migraines that are unrelated to SMA, I am typically pain-free.
This fact frequently perplexes medical professionals as they stare at my extreme lordosis in an attempt to understand how it’s possible for my spine to bend so far in the wrong direction. Even I have to agree that this spinal curvature appears as though it should be unbearably painful, yet it doesn’t cause any discomfort.
Aside from monitoring the lordosis, my family and medical team help to ensure that my wheelchair and bed don’t cause pressure sores. Many components of my wheelchair are custom-made from soft materials to comfortably support my body. I also have a selection of small pillows in various shapes that were designed and sewn by my grandmother. These pillows can be tucked around me to provide additional support or relieve unwanted pressure.
These questions only scratch the surface of the many things I’ve been asked about my disability throughout my life. Some questions are common, and others are unexpectedly unique. Either way, I’m happy to answer them, not just on Rare Disease Day, but any day.
Is there something you would like to know about me or SMA? Drop your questions in the comments below. I’ll do my best to answer each of them.
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.
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