One useful thing SMA taught me was how to accept change
Here's how I'm faring more than a year after my diabetes diagnosis
Now that a new school year is ramping up, my mom’s volunteer day care service for my niece, Lily, and nephew, Lucas, is back in full swing. My sister, an elementary school teacher, had all-day meetings this week, and school doesn’t start until next week. As such, our house has been loud and energetic for the past few days.
Over the past eight years, we’ve designated a room next to the kitchen as the kids’ playroom. Although it’s filled with an abundance of action figures, stuffed animals, toy trucks, and a kitchen play set, the kids are always asking for more additions. I can’t say I was any different at that age. However, the way I treated my toys back then starkly contrasts with how they handle theirs today. Whereas I played with my figures gently and placed them in meticulously organized buckets at the end of each day, the kiddos in our house enjoy thrashing toys to the ground and tossing them aside when they’re done playing. It’s similar to a scene in the movie “Toy Story 3.”
As a grown adult who still collects action figures, I took a few of mine off the shelf the other day to donate to the playroom. At first, it felt good to share some of the ones I had had for years so that the kids could enjoy them. Yet within 48 hours, I saw that a Spider-Man figure had been unceremoniously decapitated like it was a character in the “Final Destination” movies. So much for a piece of plastic sentimentality that I had probably owned since I was around the same age as the kids.
No, I won’t use this column to eulogize that Spider-Man figure, but its sudden destruction did lead my brain to make an unlikely connection between it and life with SMA. In life with SMA, change happens fast. Caregivers may transition to other jobs, physical abilities might fade away, and the need for a new medication can arise. With each change, adaptation is key to moving forward.
Yet, not all SMA-related changes are negative. Even some that start as negative can ultimately yield positive outcomes. I wrote last year about my type 2 diabetes diagnosis, which was terrifying at the time. Not only did I have to deal with another major condition on top of SMA, but I was also venturing into unknown territory. Although I had a lifetime of experience with managing SMA, I was a novice when it came to drastically changing my diet and regulating my blood sugar levels.
The first few months after my diagnosis were like boot camp. I learned as much as I could about the nature of my condition and worked on significantly reducing my carbohydrate intake and seeking healthier foods. I took an online class that my doctor prescribed, did research on my own, and spoke with friends who also have diabetes.
Eventually, I started to feel more in control of my health, and within months, I experienced great results. My doctor echoed these sentiments, expressing his astonishment that I had adapted so quickly.
Fifteen months after my diagnosis, I don’t think I’d be where I am if I weren’t so familiar with sudden change. Despite my initial fear and anxiety, I worked hard to reduce my hemoglobin A1c and develop a healthy diet. These changes pushed me toward a better lifestyle, and I now feel physically better than I ever was before.
If there’s one constant in life with SMA, it’s that change is always right around the corner. Some changes are harder than others, but we always find a way to adapt.
Also, I’m not giving any more of my toys to my niece and nephews anytime soon.
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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