Contemplating the Changes in a Quarter of a Century of Life
Living with SMA is a different experience for a columnist turning 25
The passage of time is a strange thing. A quarter of a century seems like such a long time to have been alive, yet at the same time, it’s like the blink of an eye. Somehow, as of Sept. 26 (the day I’m writing this), that’s exactly how long I’ve lived.
The 25th is generally considered to be a milestone birthday for everyone, although I think all of them should be. At the time of my SMA diagnosis, I was expected to have no more than three of them — a mere three blinks of an eye that miraculously grew into a quarter of a century. So I find each and every birthday to be a blessing.
Still, I can’t help but wonder what’s supposed to make this particular one special. According to my extensive research — yes, it was a Google search — 25 is an angel number, and it’s believed to bring about a time of change in your life. That change could be remarkably good or entirely unwelcome, but it’s expected to be big.
Admittedly, big changes tend to make me nervous, so I’m hoping it’s the good kind. Either way, I’ll be praying for continued angelic protection during what evidently has potential to be a holy year.
Even though I’m not always terribly fond of change, I’m no stranger to it, either. As former SMA News Today columnist Kala Godin notes in a column titled “Adapting to Change Creatively,” things are constantly changing when you’re living with SMA. We have no other option but to adapt.
This is a fact that people with SMA and our families know to be true. SMA can create plenty of its own changes, and it’s also a factor in the ones that most people experience in careers, education, relationships, and living arrangements.
Often, the most notable changes that SMA causes are related to health, and they’re usually challenging. Infections land us in the hospital for days, weeks, or months and permanently affect our daily lives. As our condition progresses, we lose abilities and must either learn new ways of doing things or give them up. When our health declines, we add more nurses, specialists, appointments, medications, and medical equipment to our care plan.
Do you see why I’m not a big fan of change?
Alas, I’ll concede that not all change is bad. After all, the world would have no butterflies if nothing ever changed. And even in the world of SMA, things are changing for the better. We’re making progress that once seemed unfathomable.
The reason babies with SMA were given such a short life expectancy 25 years ago is because we simply didn’t know how to help them survive longer than that. We barely knew what the disease should be called, let alone how to treat it.
Today, we know so much more, and we’ve applied that knowledge to medical advancements that increase quality of life and longevity for people with SMA and similar diseases. We even have two disease-modifying treatments and a gene therapy for SMA!
Speaking of treatments, that’s one good change I’ve experienced in life with SMA. It’s been two years since I started taking Evrysdi (risdiplam), the only oral or feeding-tube treatment for SMA, and it’s made a noticeable difference.
After an initial bout of unpleasant digestive side effects, the treatment has gone smoothly, and my family and I have observed slow but steady improvement. So far, I’ve experienced a more productive cough, better neck control, more arm and hand strength, increased stamina, and improved mobility while lying down.
These slight changes might not be apparent to someone who isn’t looking for them, but to us, they’re a big deal. They’re making daily life and care a little easier. It’s a reality that we once thought would be unobtainable for my generation.
While it can be easy to label change as good or bad, perhaps there’s another way to look at it. Maybe we should try focusing more on how we’ll allow the situation to change us — what our attitude toward the situation will be — instead of what’s happening beyond our control.
My friend and fellow SMA News Today columnist Ari Anderson once wrote, “We can’t always choose what befalls us in life, yet we do have a responsibility to choose whether we’re changed for the better or for the worse. We literally have this choice each day.” That certainly seems like sound advice.
None of us can really know what our future holds. Change is inevitable, though. I can’t tell you when or how, but it’ll happen in my life and yours. It’s my hope that regardless of what kind of change we encounter with each passing year, we’ll strive to handle it with grace, adaptability, compassion, and dignity.
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.