Defining ‘good health’ on my own terms
My medical chart only shows a fragment of who I am
Last December, my brother kept badgering me about what I wanted for Christmas. I was so sick with a respiratory infection at the time that my only focus was on getting better, not a present.
Fighting any kind of respiratory illness can be life-threatening for someone living with spinal muscular atrophy (SMA), so my mind was a bit preoccupied. With that in mind, I half-jokingly told him, “All I want for Christmas is good health.”
To my surprise, he used a 3-D printer at work to make a “Good Health” plaque for me. I burst into laughter when I opened it. While it was rather clever of him to bring my wish to life in a creative way, I also found humor in how relatable a gift it was. Now, the white plastic plaque is the first thing I look at when I wake up every morning, and it’s a mantra I repeat to myself every day.
Alyssa Silva’s brother made her a “Good Health” plaque for Christmas. (Courtesy of Alyssa Silva)
The irony of this sign, though, is that I’m galaxies away from being the picture of good health. I don’t meet the standards of pharmaceutical companies or medical professionals, nor do I have the best track record on my medical chart.
The other day, I was completing an online check-in for a doctor’s appointment and was shown an overview of all my ailments. Among the 17 issues listed, chronic respiratory failure, esophageal dysphasia, and general muscle weakness sent a shiver down my spine. It was a stark reminder that comes with the reality of living with this disease.
Nevertheless, I can still define good health on my own terms. After all, my medical chart only shows a fragment of who I am. It isn’t a comprehensive representation of my life with SMA.
I’m my own monitor
To me, good health doesn’t solely rely on test results to determine whether I’m healthy. It doesn’t matter how many times I go to the gym (ahem, never) or wake up in the morning and go for a run (also never). It isn’t indicative of the number of times I’ve been hospitalized or the fact that I rely on different medical equipment to stay alive. Instead, it’s found in a way that’s deeper and more personal to me.
Above all else, I define good health as being in tune with my body. When I take the time to listen to its needs, I approach each day with a healthy mindset. My expectations are realistic. I know where to spend the small amount of my daily energy. When I consciously choose to listen to my body, I’m nourishing myself in the best possible way.
There are also little things I can do to redefine good health. Sometimes, it looks like remembering to laugh often, despite the fact that my body doesn’t always want to cooperate. It’s remembering to take my medications and rest, even when I don’t want to. It’s knowing there’s still room to pursue joy amid the pain that life brings. Though seemingly insignificant, these small actions play a greater role in my overall well-being.
When living with SMA, there will always be good and bad days with my health. Some days my body will show up for me in wildly unexpected ways, and on others it’ll feel as though the weight of my issues is too much to bear. That, I know, is out of my hands. But I can still control my own definition of health — one that isn’t measured by someone else’s definition but is rooted in purpose, laughter, and what I believe makes life worth living. No medical records can hold that kind of power.
That’s what I believe it means to live in good health. And it’s something I’ll always live by.
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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