While spinal muscular atrophy is strictly a physical condition, it can still take a mental and emotional toll on those who have it. Between having to be dependent on others for physical needs, feeling like a burden as a result, and constantly being reminded of the things you…
Part of being disabled is waking up one morning and wishing you could be done with it all. I’ve never admitted that before, least of all in a public forum, but I think it’s something we have to acknowledge at one point…
My parents say it was another beautiful, sunny Saturday in April. They had two perfect children, a boy and a girl, like they had always wanted, and they couldn’t wait to finally start a family together. However, the merriment that usually filled the room suddenly stopped on that…
Traveling is an important part of life. While many take this ability for granted, it is next to impossible for those like me. I can take advantage of all the other modes of transportation, but airplanes are behind the times. I am unable to remain in my chair…
Surrounded by kids, friends from school, camera pointing at them, masks on, and backdrop chosen. A birthday party is in full force at a venue called Selfie Party Fun in Naperville, Illinois. A full array of activities was going on, most of which Ella can partake in,…
The upcoming film “Don’t Worry, He Won’t Get Far on Foot” by director Gus Van Sant and starring Joaquin Phoenix is already stirring up controversy in many disabled communities. Depicting the life of the late quadriplegic cartoonist John Callahan, the film is just one of many movies…
I like setting goals and making lists of everything I want to accomplish over the next 12 months. But resolutions feel dangerous to me — mainly because I never actually achieve them. I finish my to-do list every day for a week, maybe two, but…
Coming to you, live from my couch and in yesterday’s clothes, this column is all about how I made a mistake. Truth be told, I’m not happy about admitting it. But with these words and with these columns, I made a promise to myself to always show up…
Although we naturally avoid trials, those are what build character. Good times are wonderful, but they do comparatively little to prepare us for inevitable hardships. For me, the most terrifying experience of my life turned out to be the most beneficial experience of my life, both mentally and physically. Let…
“Whoa, Daddy, Daddy!” Ella exclaims as I sit her on her bath chair. “Whoa, whoa, Daddy!” Ella says as I sit her on the toilet. “I’m gonna fall!” Ella offers as she sits on the couch. Now that…
