I recently switched therapists. I’ve only seen her a few times, but I already have a good feeling about it. She’s survived two different types of cancer and has a wheelchair for when her chronic illness flares up. Her daughter also was misdiagnosed with…
Some of my biggest lessons have come from my toughest messes. To me, that’s the best way to grow. It’s the best way to move forward and come to terms with the challenges and obstacles people with SMA face on a daily basis. However, being able to learn…
Editor’s note: Columnist Michael Casten begins his “Family Perspectives” series by interviewing Ella’s grandfather. In this series, Casten sets out to explore how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A native of Indiana.
Having SMA means that strangers approach me on a regular basis. From the onlooker who’s infatuated with my service dog, to the 10,000th person who sees my wheelchair and asks me if I “have a license for that thing,” I’m quite used to comments from people that range…
I officially graduated with my bachelor’s degree in December, but I only just received my diploma in the mail. I’ve been expecting it for weeks now, but it was still kind of surreal, opening the manila envelope and seeing my name in fancy script,…
For the Silva family, cleaning out the basement in recent weeks has become a trip down memory lane. Pictures strewn in boxes tell stories of my childhood and how my parents did everything in their power to give me a “normal” childhood. Old textbooks remind of all the…
As someone with SMA, I always have to be more cautious of germs than most people. A simple cold can escalate into something more serious, and even become life-threatening. I have always taken what I like to refer to as “reasonable precautions.” I wash my…
SMA affects the entire family. Sometimes it’s obvious, and sometimes it’s not. Either way, each involved individual must navigate the disease, alongside its implications, and figure out a way to cope. Child or adult, male or female, parent or sibling; the…
Alas, after a long couple weeks of constantly spitting phlegm into a cup and spending hours attached to my Vest Airway Clearance System, I’m finally getting over this pneumonia and back to “normal.” Normalcy isn’t exactly something that factors into my life at any point, but I…
I realized the other day that I am missing a collarbone. It’s something I’ve been thinking about lately. Parts of the body that appear in my writing and reading: collarbone, sternum. I memorized each term for an exam in high school —…
