People often assume that disability prevents someone from being physically able to express themselves. Especially in the form of body modifications. They would be wrong. One of my favorite forms of artistic expression is body modifications, specifically tattoos. They’re my favorite! I started dyeing my hair in sixth grade. Since…
From the time I was in kindergarten to when I graduated high school, I had a full-time aide accompany me to all of my classes. This person helped me with my books, took notes for me, set up my lunch, and kept me in line so…
I’ve thought about starting an antidepressant medication several times over the years. As a sophomore in college, fresh off the realization that my anxiety and depression weren’t just character flaws but in…
According to the calendar and the extra hours of sunlight we’ve been getting a feel for, a new season is finally upon us. I love the message this time of year — the very beginning of spring — has always brought to the table. Spring marks the…
Ella has had several surgeries in the past seven years since her diagnosis of spinal muscular atrophy (SMA). Her first was for the placement of her G-tube. This device allows us to supplement Ella’s diet and administer her medications easily. Her second surgery was…
Hello, everyone! My name is Kala, and I’d like to introduce you to the first installment of my column, “The Mermaid Chronic(les).” Mermaid stories have always been my favorite, whether they’re fairy tales or mythology. I love the wicked ones and the sweet ones. In almost every story, the mermaid…
A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth News. Ever since we started having conversations about our disabilities, and since I lured him…
I try to be environmentally conscious. I’ve been using my Google Home for years now, and have been switching as much of my home as possible to smart technology. My Google Chromecast lets me turn my…
For those of you who don’t follow me on Instagram and see my absurd collection of pictures of my dogs, I have two retrievers named Wish and Vince. Vince, or Vince Charming as he’s affectionately called, is an English cream golden retriever and the family dog.
The title of this column is “Five Servings of Strength,” referring to the five members of our family. There’s me (Michael, the father), Lindsay (the mother), Ava (11), Henry (10), and Ella (8). We realized soon after Ella’s SMA diagnosis that it takes the whole family’s…
