To boldly go where the SMA community has not gone before
The life of adults with spinal muscular atrophy is largely unexplored territory
I was always a “Star Wars” acolyte, but I became interested in the world of the “Star Trek” science fiction franchise when I was in high school.
Whereas “Wars” is a giant space opera that takes place in the distant past with characters from a faraway galaxy, “Trek” imagines a future for humanity in which progress and exploration are defining characteristics. From the start of the original series, the members of the starship Enterprise outlined their mission via Capt. James T. Kirk’s voiceover: “to explore strange new worlds; to seek out new life and new civilizations; to boldly go where no man has gone before!” (By “Star Trek: The Next Generation,” the phrase had become “where no one has gone before.”)
In each “Star Trek” series and movie, the heroes venture into uncharted territory. Whether they’re navigating the physics of time travel, encountering an undiscovered civilization, or confronting the complexities of artificial intelligence, these characters must use their philosophical and collaborative capabilities to complete missions.
Likewise, living with a progressive disability such as SMA, as I do, is a continuous venture into the unknown.
Adult life is an uncharted world
About a week ago I saw my urologist for my annual checkup. As we talked about a small spot on my X-rays that could indicate the formation of a kidney stone, we discussed recent changes in my health that might be factors in this scenario. The No. 1 issue is my diagnosis of type 2 diabetes, which I received this year. While I’ve improved my diet and reduced my blood sugar levels since May, I’m still learning about how this condition affects and coincides with my SMA.
My urologist then pointed out that because more people with SMA are living longer, patients and doctors are entering unfamiliar territory. Many of us received limited resources when we were younger and were told we had limited lifespans. Now that we live in a world with approved treatments, improved access to medical services, and more connections with community members, the landscape of SMA is changing.
As I move further along as an adult with SMA, the new and increased challenges are often overwhelming. I’m accustomed to numerous doctor appointments, blood draws, assistive technologies, and pain management. While I’m also used to disability progression, it’s moved to a new level as I’ve gotten older.
Adulthood with SMA means managing a revolving door of caregivers, dealing with new and exacerbated symptoms, and wrestling with uncertainty, among other changes. I don’t know what my life will look like in a few years, or even who’ll be on my care team in 2025. Even friends who live independently or with their partners struggle with these issues.
Increased fatigue is another symptom that affects my life more now than when I was younger. Looking at my creative output since January, I’m disappointed that it pales in comparison with previous years.
There have been times when I’ve churned out multiple comic book scripts, essays, and articles, all while working full time. Throughout 2024 I’ve still exercised my creative side, but the gaps between projects have been much wider than in the past. There have also been multiple occasions in recent months when my productivity at work has lagged, and I felt disappointed in myself.
The reality is that my biggest obstacle isn’t procrastination, but SMA progression. I’ve written more about pain, fatigue, and discomfort in the past 12 months than I have since starting my column in 2017. The daily impact of my disability ebbs and flows, but the toll it takes on me at this point in my life is undeniable.
Granted, that’s not to say that SMA adulthood is all hardships. The biggest positives are the strength and support I find with others in SMA and disability communities. Much like the crew of the Enterprise, we learn and adapt together as we tackle each mission.
The world of SMA will likely look different in five years, and I’m sure there will be new advancements and new challenges. As our community ventures into uncharted territory, we have this course of action: to boldly go.
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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