For most of my life, summer was my favorite season. I’ve never been a fan of school or frigid temperatures, both of which are absent during the summer. Once I graduated from high school, however, summer no longer held first place. Over the last few years, fall has…
I went to Barnes & Noble by myself while my mom went to dinner with a friend. I go out unaccompanied quite often, which requires a little extra effort on my part. When alone, I have to make sure I can maneuver my chair and…
I’ve done some arguably ridiculous things over the past two decades in the name of health. I’ve had metal rods surgically implanted in my back to keep my spine from curving. I’ve had tubes shoved up my nose and down my throat. I’ve driven to the…
In May 2017, I became an auntie to a beautiful little boy named Lincoln Anthony. I’ll never forget the day we heard the news. It was a sunny Saturday morning in early fall when my brother’s affectionately named “demon dog” darted into the house wearing a shirt. I…
For most of the year, I’m chilled to the bone. While most people are comfortable at 60 degrees Fahrenheit, exposure to such a temperature for half an hour results in loss of hand function until I warm up. That is a common issue for those in wheelchairs, as…
Obtaining the right equipment for a child with a disability can be expensive. Yes, some insurance companies cover a lot of base medical needs, but many necessary modifications are not covered by those companies. Thankfully, the University of Illinois at Chicago has a program called the…
I turn 25 in a few days, which for me is a pretty substantial accomplishment. After four broken legs, two major surgeries, multiple run-ins with pneumonia, a couple of pills shoved up my butt, and far too many catheters, I’ve managed to carry on. I figure…
I’ve quoted my favorite poet, Ada Limón, several times throughout the history of this column. Her poems “The Leash” and “Instructions on Not Giving Up” have been key…
I had a friend in college who was very much a free spirit. He always went with the flow, never sweated the hard stuff, and was the kind of person who was always up for an adventure. To kill time and unwind together, we used to hop in…
In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I never wanted to hear the word Spinraza again. The current situation is…