Guest Voice: SMA didn’t stop me from winning the game of life
Despite all the hardships, I wouldn't be who I am without SMA
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Would you trade away your disability if you could? I know many people ponder this, although usually silently, so I thought I’d give you my thoughts for a penny. My short answer is no.
Yes, I have days when my disability makes me feel like life is completely draining just from breathing, or I twist and turn in pain. I have days when disability makes me miss all the fun stuff my family and friends do, as there might not be any ramps or elevators available.
Some days, everyday chores take twice the time and effort as they usually do. Things can fall out of sync when your brain works at 150% while your body is at 10%.
Sometimes I’ll wake up and discover that I’ve lost yet another ability, even if it’s a small one. I’m slowly getting used to both dependence and a feeling of helplessness.
Other times, I’ve had to spend more time in the hospital than at home and endure horrible treatments I wish I didn’t need. A tiny cold can suddenly turn into a battle of life and death.
In addition to all that, I constantly face resistance from society over my right to basic needs — not just physically, but also mentally. I’m seen as a second-class citizen because I have SMA, so I have to claim, defend, and fight for basic human rights. Or, I become the object of pity or “inspiration.” But I’m never included. I’m never equal. It’s endlessly frustrating.
After reading all of this, you might wonder why I wouldn’t trade away my disability. It boils down a single answer: I wouldn’t be who I am without SMA.
Seeing things differently
SMA has shaped and shifted me over the years, and I’ve experienced so much I otherwise wouldn’t have. This journey has given me awareness and knowledge, including the ability to see, hear, and understand things most people don’t perceive. It has expanded my universe.
I’ve met people who have given me unforgettable memories and experiences. I have friends from all corners of the world.
SMA has made me realize that our time on this planet is limited, and the smallest things usually mean the most. That makes me appreciate things more and act differently.
I know how it feels to be different, and not fitting the norm or being accepted influences my values. It gives me a more humane outlook and prompts me to be less judgmental.
I’ve experienced enormous love and compassion. A nondisabled person once told me that I live a rich life compared to them, despite all of my difficulties. Or, perhaps it’s because of my difficulties.
In life, we play the cards we’re dealt. We might not always be happy about them, but it is what it is. Even if the cards seem bad, though, the result might not be. You can still win with bad odds.
To learn more about the author, visit tigerjojo.com or follow him on Instagram at @tigerjojo1.
To submit your own Guest Voice for publication on SMA News Today, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: SMA News Today.”
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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