After three denials by my insurance provider, countless phone calls and my amazing neurologist fighting for me, I finally acquired a new wheelchair a few days ago. The process took a year, and while the insurance fiasco was a headache, at least this particular battle is over…
Some of you may know that a year or so ago I founded Monstering, a magazine for disabled women and non-binary people. It started with the desire to create and produce a small, handmade zine. I’d always wanted a space to…
Did you know that when buffalo sense a storm coming, they run into it? I recently took a writing course, and the instructor shared this fascinating tidbit with us all. Most animals and humans alike seek shelter when we feel and see a storm brewing in the distance. Lightning strikes,…
“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.” Ella is becoming increasingly frustrated with having SMA. She has…
To the average person who only visits in the event of an emergency, it may seem like hospitals have every kind of medical equipment imaginable. Even the run-down ones still have IV tubes, operating tools for major surgeries, vaccines, and a whole lot of mediocre cafeteria food.
True to my word, I joined a dating site this week. And by this week, I mean the day I wrote this column, since I’ve been putting it off all week. But I did it! Which means I can tell my therapist on Tuesday that, yes,…
In promising to be as open and honest with you at all times, I must preface this column by telling you I find myself in a season of struggle right now. Life as I know it is messy. It’s chaotic and out of balance and, at times, downright ugly. A…
Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella it represents a sense of freedom — freedom from the constraints…
Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out that Medicaid had approved…
I went to therapy this week for the first time in, get this — 14 months. I talked about loneliness; a familiar creature, at least to me. I’ve always felt its dark shadow, heavy and suffocating — even as a seventh-grader, during what…
