Riding the Roller Coaster of Being a 20-something With SMA

In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast of…

Thanks, but Your Prayers Really Aren’t Necessary

Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of flowers.

Giving Up Isn’t a Personal Failure

When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my defense, I was in the midst of a major depressive episode…

I’m Starting to Weather the Midwinter Bleakness

Every 28 days or so, I convince myself that I’m dying. If you’ve read my column before, you’ll know that I have a complicated relationship with death, which is to say I see it everywhere. Years ago, when I first started writing for SMA News Today, I thought I had…

Even in the Midst of COVID-19, We Must Own Our Time

As I write this, my room glows in the midafternoon sun. Sometime last year, I invested in a suncatcher, so there are rainbows everywhere — pastel sunbursts that are there, then gone. It’s unseasonably warm in Minnesota today, so the snow is melting, dripping steadily off the roof. According to…

Anxiety, Depression a Problem for School-age Patients in China

School-age children and adolescents with spinal muscular atrophy (SMA) in China experience a high rate of anxiety and depression, a questionnaire-based study suggests. “Professional psychological care [may be] included in the standard of care,” the researchers wrote, noting that a higher prevalence of depression was seen among students with…

For the Love Who Stayed on My Darkest Nights

After I was hired as a columnist for SMA News Today, a stack of onboarding documents was sent to my email. I spent an entire day reading them and signing my name systematically. But among the documents, one titled “Writing Advice” drew my deeper attention. I’m not usually one who…