I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits…
I’ve always been a fan of vulnerability, I think because the concept is intrinsic to who I am as a person. I can’t leave the house without accepting vulnerability. To be seen like this, with my wheelchair and bony wrists and abdomen bloated from stomach breathing,…
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 knowing they’re coming, still bring an awful sense of dread: “You’re…
Henry left the house in the evening to go to a friend’s house for a sleepover. As soon as her brother had departed, Ella began complaining that she never gets to do anything fun. Finding independent activities for Ella has proven to be a…
As a kid, there were two things I really couldn’t stand: math and pulmonary function tests (PFTs). I was too young and naive to have an angry fanboy mentality toward the “Star Wars” prequels. Math, however, didn’t coincide with my interests or adolescent…
Along with all my other health problems, I’ve been dealing with cystic acne since high school. At the time, I hoped it was nothing more than regular acne that would run its course and become a non-issue…
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 of the week. I love the slowness this weekly time brings,…
For a couple weeks, I’ve been in a malaise and I couldn’t pinpoint the source of it. Of course, the occasional bad day will happen, but this was prolonged. Reading various columns and SMA News Today Forum comments has reminded me just how brutal winter is for…
Ella is beginning to look to her future. She realizes that all of the hard work she puts into her physical therapy sessions will help her in the long-run. She accepts that the Spinraza (nusinersen) injections, which she doesn’t like taking, are also…
I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.
