The Good, the Bad, the Ugly, and the Beautiful
Everyone is shaped by their circumstances, but SMA shapes you (literally) in a more extreme way. For most of my life, I did not understand the difference between my personal preferences and the person I was becoming out of necessity due to the implications of this disease. It has only recently become apparent to me just how much SMA truly affects every aspect of my life. I have had revelations in good, bad, ugly, and beautiful ways.
Most of the food I eat is dictated by my disability. There are many foods I have avoided because they are either impossible or too difficult to eat. For example, foods like steak, salad, and sandwiches are impossible for me to chew. I like them, but simply can’t eat them. On the other hand, there are others I thought I didn’t like — including soup, rice, and certain vegetables and pasta dishes — because they were too difficult for me to eat by myself. But lately, I’ve come to realize that I actually do like them if someone feeds them to me. And that’s a good thing.
This is probably the most interesting revelation I’ve had about myself. For most of my life, I thought I was an antisocial introvert. I hated going to most events and avoided parties as much as staircases. It took me about 20 years to realize that I actually do like people — I just can’t communicate in those loud environments. In order to be heard, I have to take a breath before every couple of words, which is exhausting. I still don’t like being in loud situations, but at least now I know why. It’s not me. It’s SMA.
Anyone who has SMA will tell you that staying warm is next to impossible because of our poor circulation. What little physical ability I have goes away in any temperature below about 60 degrees. Where I live, this is the case for the majority of the year. Obviously, I can’t do things like sled or ski, but even going outside in the winter for a minute to get in the van takes a toll on me. It can take me an hour just to recover from that alone. I used to think I hated the cold. But again, I don’t. SMA does.
Besides my faith, sports are my biggest passion in life. It has always been my place of refuge. When I’m watching a football or basketball game, all the pain goes away. The amount of joy sports brings me is simply impossible to put into words. I have been through so many illnesses and difficult circumstances, and sports has been my best friend through it all. My situation affords me a lot of time not only to watch sports, but to analyze them and ponder them. They probably consume 80 percent of my thoughts. I think it’s safe to say that I would not love sports as much if I had a working body because I would be out doing other things. So in this case, SMA has given me the beautiful gift of time to indulge in my passion.
Building a solid understanding of who we are is an important — and sometimes challenging — task. I want to encourage not only people with SMA, but people in general, to be intentional about discovering — and accepting — their strengths, weaknesses, and preferences.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.