At 10 months old, I was diagnosed with spinal muscular atrophy (SMA) type II, a recessive genetic neuromuscular disease. It increasingly robs me of strength and affects my spinal cord’s motor nerve cells. As the number one genetic cause of infant death, and with an average life expectancy of about four years, I’ve beaten the odds at age 21.
My medical file is about a foot tall, but let me summarize it. Please understand that I am not complaining or seeking your pity. I’m just telling it like it is.
I have had countless hospitalizations, nearly dying on numerous occasions from complications like pneumonia and metabolic acidosis. I had a spinal fusion at age 9. And now, in the past few years, I have lost the majority of my remaining strength. The physical pain and suffering I’ve been through are extreme.
The simple reality of my physical limitations is certainly difficult to deal with. I LOVE sports, but I can’t play them. I can’t go to certain places, such as friends’ houses, without wheelchair access, and even if I can, I probably can’t participate in whatever is going on. Even parties or events — which I usually can attend if I want — I choose to avoid because my voice doesn’t carry in loud environments. What’s the point of going somewhere if you can’t communicate? I can’t drive a car. I can’t scratch my own head. Have you ever had an itch you can’t scratch? The list of the more obvious physical impediments is endless and absolutely horrible. But that’s my life. My reality. It’s all I know, yet it’s far from the worst part of my disability. Not walking is the easy part.
So, what’s the worst part? Having to rely on others for everything. I can do only what others are willing to do for me. Because of this, I feel trapped, helpless, and powerless. Even things I actually can do physically, I still can’t do whenever I want. For example, if my caregiver needs to go to bed, I’m going to bed — even if I’m not tired. Although I’m 21, I don’t make most of my own decisions. My caregivers decide for me based on their willingness and availability. I know they love me unselfishly, but I hate being a burden and dependent on anyone.
The second most difficult part is missing out on things like family trips. Simple tasks that most people take for granted, such as taking a shower or going to the bathroom, are extremely challenging if not impossible for me when on trips. Not to mention that when I do travel, I essentially take a hospital room with me. Even hotel beds present a challenge. I need to bring a foam egg crate topper because I need a really soft bed or I’ll be in constant pain. I often say, halfway jokingly, that I’m confined to one square mile of frozen wasteland. As you can imagine, there is so much more I wish I could do.
Given all this, it would be far too easy to sink into despair and self-pity. And to be honest, the temptation is camping on my doorstep. But I have consciously chosen instead to heed the sage advice of Abraham Lincoln, who famously opined, “A man is about as happy as he makes up his mind to be.” So, while I don’t have a choice about my physical condition, I do about my mental and spiritual one. I can’t fix my body, but I can rise above its limitations.
In choosing a title for this column, I first considered “Always Looking Up,” with its too-clever-by-half double meaning —physical and mental. But I’m going to be truthful, it’s less prideful and far more accurate to admit that I’m still, and always, being “Refined by Fire.”
All of my hardships are the fire. Can I extinguish the flames? No. In fact, they only blaze hotter as time goes on. However, what defines me is how I respond. A fire can either warm a house or burn it down. Trials can either refine me or destroy me.
Even though life with SMA is hard, there is a silver lining. Our hardships afford us the opportunity to grow into people of great character, and therefore, to be an inspiration. That’s where I find my purpose. If I handle my adversity courageously, it can motivate others to face their own.
To state the obvious, everyone has their own trials and tribulations. My hope in writing these columns is to encourage people to welcome their suffering as an opportunity to grow — to be refined by fire.
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.