Columns

Your Scars Tell a Story of Survival and Strength

I’ve collected a variety of scars throughout my life. Many people with SMA have comparable ones from similar surgeries. Even if you don’t have SMA, I’m guessing you also have at least one or two scars of your own. Each of my scars tells its own story of a…

What Working at BioNews Has Taught Me

This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go. When I was originally offered this role as a columnist for BioNews — the company that publishes this website — I…

Why I Appreciate Diagnosis Day Anniversaries

It’s probably safe to say that these past four months have been a blur for many. It seems that mere blinks ago it was mid-March, the last days of normalcy in untold routines, and the beginning of upheavals that have defied description. Somehow, it’s…

Ella Is Losing Weight as She Grows Older

Ella is 10 and will start fifth grade this fall. She has “magic” adjustable rods in her back that give her height. But she has exhausted the length of the rod and will need a new one put in soon. She weighs 36 pounds, a dramatic…

Embracing Disability Pride Month

July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that…

Normal-adjacent: Welcome Back, PCAs

I hoped that things would “get back to normal” — whatever that means — by mid-summer. Reader, I was disappointed. But I’m used to disappointment. After all, I spent the better part of two decades learning to embrace lockdown mentality. I’m an expert at gazing wistfully through windows and…

A Drive-in Concert Was a New and Exciting Experience

Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t safe right now. However, I forgot to account for how creative people can be. On Independence Day, my family…

Teaching Children About My Disability

It’s no question that children are curious little people, and as someone in a wheelchair, I have often witnessed their curiosity. If I were to guess, I’d assume disabilities aren’t something they’ve seen in their short little lifetimes. As a result, they stare and allow their curiosity to get…