I’ve been writing this column since April, and while I haven’t shied away from addressing personal topics like adapting to my weakening body and at times feeling burdensome, dating is a subject I’ve steered away from. When I was on a panel at the Cure SMA…
Columns
I don’t know about you, but it’s getting harder and harder to keep my head above water these days. Part of it is school and part of it is depression, but most of it is just … life. There’s always something bad going on. Another…
My wheelchair has been my ultimate sidekick since I was a curly-headed toddler, and just like any other great sidekick, I rely on it for pretty much every aspect of life. Without my wheelchair, I would be helpless, confined and literally stuck. As the only source of independent…
Seven-year-old’s question everything; it’s part of how they learn about the world. Ella is no different. She questions us about many things. Of course, in the heat of frustration or while being reflective on any given situation, the questions revolve around SMA. Ella…
The ABC sitcom Speechless, which premiered in 2016, has been discussed widely among various disability communities since its debut. Beyond the fact that it is about a family whose eldest son has cerebral palsy and uses a wheelchair, the show is not afraid to tackle subjects…
A few years ago, right around the time I started college, I fell into the deep, dark hole that is depression. Not knowing what the hole of depression usually looks like, I had no way of pulling myself out. So I just sat at the…
A few weeks ago, I wrote about how my Echo Show from Amazon Alexa has significantly increased my independence, particularly when I’m at home. Recently, my editors here at SMA News Today contacted me about several Echo Dot devices they had to give away…
I always get something out of my therapy sessions. Sometimes it’s a word or a phrase. I’ll never forget when my therapist told me that, even in the midst of an attack, I won’t be anxious forever. I don’t struggle as much with anxiety…
As much as I don’t like to admit it, sometimes life can be brutally unfair. I’m even hesitant to type these words because it seems as though everyone is always so focused on creating and chasing the idea of a perfect life. No one wants to be metaphorically…
Our nights are broken up by machines beeping, or Ella calling for us to reposition her as she sleeps. Having a child with SMA means interrupted sleep is par for the course. Overnight, Ella has her feeding pump running, giving her…
