Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s different for everyone. It also changes. One of the best side effects of my life with SMA is that I’ve been able to exercise my adaptability and my creativity. For me, the…
Columns
Finding Comfort in the Absurd
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
I finally got a tattoo. It may not seem like that big of a deal; people get tattoos all the time, sometimes they decide to get inked on a whim. You can show up at a parlor and leave an hour later with your…
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 want to write social media off entirely. I love my online…
Play dates come and go for Ella, just as for any other 8-year-old. She usually has her friends come over to our house because of her wheelchair. The kids play on the first floor for a while, then they want to go upstairs to…
We’ve all had some cruddy parking experiences. But when you have a disability, it’s usually a little more complicated. The difficulties typically occur due to other people parking. Sometimes, the problem is the parking spot. My current van is a side-entry model with a manual fold-down ramp. It’s similar…
About that Episode of ‘Dr. Phil’
A few weeks ago, reality television host Dr. Phil sparked a major controversy with his statements about interabled relationships. Much like Ken Jennings’s infamous 2014 tweet, a single statement from America’s favorite psychologist led to a social media movement for people with disabilities.
The Power of a Platform
I’ve been meaning to update my website for years, so I sat down in January with the intent of revisiting my online presence. It just so happened that my sitting down coincided with my career change, turning a website overhaul into…
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 my cousins who were with me at the time weren’t even…
My nearly three-year streak of good health came to a screeching halt at the beginning of March. I guess you could say March Madness came a little early for me. I came down with a nasty virus that quickly turned into pneumonia. While I had pneumonia on roughly…
Recent Posts
- Prostate cancer medicine may slow progression of SBMA: Real-world study
- Humor is my key to survival in life with SMA
- This Christmas, I’m thankful to have resolved some health complications
- No one knows what they’re doing and everyone is doing their best
- Itvisma approval ushers in era of therapeutic choice for SMA patients
