“No, I’m totally fine” are often my famous last words when I’m actually not fine at all. Sometimes when an illness arises, I’ll downplay my symptoms. I’ll chalk them up to having a bad day while disregarding my…
Read more
Heavy goggles cling tightly to my eyes as I try to keep my balance on my mother’s lap. Even though she holds onto my waist, with the weight of the goggles, I have to carefully concentrate on holding my…
Do you ever have moments when a wave of gratitude hits you in the last place you’d expect? They are the kind of moments that make you stop and take inventory of your life, the kind where the littlest…
Driving home from Boston one evening, I witnessed the sky paint a vibrant sunset as we cruised down the highway. Bright pinks and oranges swept across the view from my window as the radio blared through the speakers. A…
A good way for me to gauge whether or not I’m due for another Spinraza (nusinersen) treatment isn’t by looking at a calendar or counting back the number of weeks from my last dose. It’s simply by feeling it.
I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a powerful tool whenever we’re reminiscing…
Do you ever hop on social media and come across a post you feel was written for you, and only you? I know social media sometimes gets a bad rap. But at the same time, I don’t…
If it’s all right with you, I’m going to use this week’s column to vent about something that happened over the weekend. To most, it was nothing that would have stood out. In fact, I’m pretty sure…
According to the calendar and the extra hours of sunlight we’ve been getting a feel for, a new season is finally upon us. I love the message this time of year — the very beginning of…
For those of you who don’t follow me on Instagram and see my absurd collection of pictures of my dogs, I have two retrievers named Wish and Vince. Vince, or Vince Charming as he’s affectionately…
One of the most dreadful, ongoing battles I’ve experienced with my doctors in recent years is my inability to gain weight. At every appointment, during every procedure, and with every hospital stay come two words that, despite…
As I get set up to type this column, the rain is steadily falling from the window behind my couch. The house is quiet and the coffee is still warm. It is Sunday morning, my favorite part…
Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my school days (I’ll blame it…
