Columns

Memories of SMA diagnosis day, 28 years later

My brother’s birthday was July 13. While we generally aren’t able to get together to celebrate, we managed to do so in 1997. Paul’s birthday fell on a Sunday back then, too. At the time, our parents served as innkeepers of the still relatively new family lodge on the…

Traveling with SMA is better with people I love

I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and Canada over the years: mountains and canyons, beaches and forests, oceans and lakes, national parks and…

A safe space where LGBTQ+ and Disability Pride meet

Upon diagnosis, caregivers and SMA patients are often warned to watch the patient’s respiratory system. The weakening of this most basic function of the human body is the most common cause of death for people like myself. Hence, regular pulmonary exams are done, physiotherapists are called in to teach…

The quiet miracle of still living with SMA

Living with spinal muscular atrophy (SMA) means my body doesn’t always warn me before it spirals into crisis. One minute, I’m sleeping peacefully. The next, I jolt up, gasping for air. My ventilator blares, its alarm shrill and relentless. Another mucus plug. Again? Someone will be here soon.

What I would tell my 13-year-old self

My late mother, who was musically gifted, fostered an appreciation of quality music in our family. I took enough piano lessons from her to serve as her other half in a two-piano duo that lasted for decades. Whether we were performing for others or simply our own enjoyment, our go-to…