As much as I love to read, sometimes the physical act of doing so isn’t easy. Books quiet my mind. They transport me to another world where hospitals and doctors’ offices aren’t the norm.
Read more
This column describes the author’s own experience with a Spinraza (nusinersen) injection. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I…
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…
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,…
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…
When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength…
There’s a memory that has sat quietly in the back of my mind for a while. After it happened, I wanted to write about the rawness and reality of how I felt in the…
Peeking up from my pillow and seeing that it was 4:55 a.m. was an unpleasant surprise the other day. I had slept only a whopping 20 minutes longer than the night before, and it…
I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!” I’m usually met with eye rolls. I…
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks…
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a…
With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of…
For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a…
Get regular updates to your inbox.
