I was all ready to skip this week’s column, convinced I had nothing to say and no energy with which to say it, when I realized something. I’m burned out. It crept up on me so quickly I barely had time to prepare. One moment I was crafting a plan…
Columns
In the 1987 science fiction spoof movie “Spaceballs,” Princess Vespa (Daphne Zuniga) is betrothed to Prince Valium (Jim J. Bullock), who dozes off constantly. He has chronic drowsiness, so much so that he yawns when Vespa flees their wedding ceremony in a runaway spaceship. When I first saw…
After closing the tab on my browser, I couldn’t help but wonder how much progress I’d made in the past year that I failed to notice. My words on the screen were there in plain sight, from a moment when life felt so different to me. It was hard to…
In the stillness of my room, a voice says to me, “You should quit social media.” It’s not the first time I’ve heard this voice. But it’s the first I’ve given it any sort of consideration. It’s 4 a.m. and my brain is a pinball machine, bouncing between thoughts. I’m…
If you’ve perused my columns in the past, you’ll know I’m a big advocate for teaching children about disabilities. As a woman in a wheelchair who looks different from the average person, I’ve been the subject of glaring stares, mind-boggling comments, and the occasional finger-pointing from children. That…
One of my favorite discoveries during my family’s recent vacation on St. Simons Island was the Georgia Sea Turtle Center on neighboring Jekyll Island. The center rehabilitates sea turtles and local wildlife in need of medical care so they can be released back into their natural…
“Sticks and stones may break my bones, but words can never hurt me.” I don’t know if this adage has retained its clout from my early school days, but surely it’s still familiar. It came in handy — sorta — when I was in elementary school. During a routine game…
Late last year, I embarked on an unexpected journey to self-discovery. The past several years had been an uphill battle with my health, each day bringing its own relentless fight. The good news was that I was surviving whatever conditions came my way. The bad news was that I…
Those of us who live with a disability that severely limits our motor skills find ourselves continually depending on others for assistance. In addition to essential daily tasks, we need assistance with seemingly mundane activities like painting one’s nails or trimming a beard. We rely on family members or…
When you’re living with SMA, you quickly learn that you cannot function without someone else’s help. One of my earliest memories is of a nurse telling me that she’d asked doctors to remove my nasogastric tube for me. I must’ve been 3 at the time. My parents weren’t…
Recent Posts
- Apitegromab moves closer to potential FDA approval for kids, adults with SMA
- How comfort and routine are vital while living with SMA
- Screening leads to earlier treatment, better results for SMA children: Study
- In my life with SMA, I strive to find the balance between joy and sorrow
- U.K. consensus sets new guidance for hip care in children with SMA
