Coming to Grips with the Reality of Lost Joy

Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the first 18 years of my life, my disease’s progression was also quite slow. I have, however, experienced a significant decline in the last few years. So, in some ways, SMA has only recently taken its toll on me. This has manifested itself in two main ways.

Video games have always been one of my main hobbies. I can’t do much in real life, so video games are the closest I can get to driving a car, shooting a basketball, and hiking a mountain. But playing them requires a level of dexterity that I am currently on the brink of losing.

After denying that inevitability for a while, I finally have had to deal with it head-on. Although I can still play video games, it’s much more difficult and probably will be impossible before too long. I already have grieved the loss. That realization was one of the most terrifying experiences of my life, but I’m glad I worked through it. I guess it’s just time to watch a lot more Netflix now.

Eating has also become exponentially more difficult. Food has always been something cherished because, again, it is one of the few things I can actually enjoy. Though I have always been restricted in this department because of limited hand use, it is almost to the point of becoming more trouble than it is worth. Attempting to eat a meal only to become frustrated and exhausted is becoming too frequent of an occurrence. Since I receive nutrition at night through a feeding tube, I don’t need to eat by mouth. I am considering cutting food down to one meal and a snack per day.

Fortunately, I have managed to accept my physical losses even though they haven’t completely taken over yet. I still hope to one day receive treatment. Due to unforeseen circumstances, I’ve been denied Spinraza yet again. I can’t go into details now, but I’ll update you when I can. I believe we are on the verge of better, more effective treatment. This gives me hope.

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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.