Coming Into Focus

My first month of college has been a success. I know it’s just the beginning of my new beginning, but I already feel like I’ve overcome many of the fears I had about doing this. The first was that it would be too exhausting. While it has been challenging, I am able to maintain my energy and pain levels because of going to class in my Quantum power chair. Another fear that I had was how I would fit into the classroom.

Not social-metaphorically but actually fit physically into a classroom of chair-desks with my power chair. The way I’ve been able to work this out is by showing up early for class. I go in first while the desks are rearranged so there is a space for me to park my chair. I typically do not use a desk to write on, however taking my first exam last week the college accommodated me by turning a chair desk around so that the desk part faced me and I could use it for my paper exam. The reason I’m going back to school is that I am finishing the science prerequisites in order to apply for nursing school.

Before I was disabled, I was a biochemistry major. I was born with Ehlers-Danlos Syndrome but I use a power chair due to complications of a fusion surgery of my head and neck. I had no idea how it would be using a microscope now as a. a wheelchair user and b. as someone with a fused head that can’t extend forward to look into the ocular lenses. Fortunately tilting my body forward is something I can do with a seatbelt.

I was able to use the microscope at the same height as the rest of the class using iLevel technology. The anterior tilt feature would make that much easier for power chair users. I’m really excited about this journey and I think I’m finally in the right place. The class before mine is a nursing class. One day when I came early into the room, the teacher along with a student moved the desks for me saying “We got this I’m a nurse and he’s a nursing student.” I was like “That’s cool, I’m pre-nursing.” I started explaining that I wanted to do types that didn’t involve heavy lifting (I’m very interested in cosmetic nursing, but also was advised by my primary care physician that there are Telehealth jobs for RNs that can be done entirely at home, and they’d put in a good word for me if I got that.) I told the teacher/nurse that I had Ehlers-Danlos Syndrome.

I was not surprised she had never heard of it. She asked me if it was like Muscular Dystrophy, and I replied “Kind of, but it affects the connective tissues rather than the muscle tissues.” Immediately it clicked for her what I had. I also met a person studying in the hallway who asked me about my power chair because they were impressed with the iLevel technology. It turned out that they also have Ehlers-Danlos Syndrome and are pre-med.

Ironically it also was the day in the lab looking at connective tissue under a microscope. I’ve seen pictures of how EDS connective tissue looks much different than normal/healthy connective tissue. I think that should be how people view this syndrome rather than labeling it as an “invisible illness” by what is seen only at the macroscopic level. Even though there currently isn’t a cure for us, I believe that by getting into the medical field that doesn’t teach about our syndrome to doctors or nurses is the best fight we can give. Real change happens from the inside.

Written by: Anomie Fatale