To My Future Roommates,
I am super excited to meet and live with you for the next semester. We haven’t really have a chance to talk or who get to know each other.
I know that you were probably pretty shocked to see your new roommate in a wheelchair, having to use a shower chair, and not being able to move normally. Anyway, my name is Meghan (but you can call me Meg). I am 19 and I am from right here in Pittsburgh, PA. I bleed black and gold, and as you can imagine the Steelers, Penguins, and Pirates are my favorite pro sports teams. I am an EMT and ski patroller. I plan on majoring in Emergency Medicine on the pre-medicine track. Maybe if I have time, I will do the ASL Certificate program as I am also profoundly deaf and use bilateral cochlear implants to hear. I have been slowing learning ASL as well as French since I was four years old.
I know I am probably not the perfect roommate that you imagined you would be getting, but due to several chronic conditions, I am currently left wheelchair bound. Nevertheless, I enjoy taekwondo (which I recently earned my black belt in), skiing, hiking, biking, fishing, and hunting. If given the choice between a month in a lakeside cabin or a month on the beachfront, I would pick the cabin. I am the Local Donations Director of the Pitt Dance Marathon, ASL Club, and the Pitt Student Emergency Medical Services, so I am pretty involved on campus when I am not hiding somewhere in the Cathedral studying.
To be honest, I am not big on the whole partying and going out and getting drunk thing, but I do enjoy game and movie nights. I love to binge watch various Netflix shows from Jane the Virgin to the Gilmore Girls. I have recently started coloring in adult coloring books, despite my astonishing lack of artistic ability and I enjoy writing articles for my blog. I also publish some of my writings on themighty.com. Although I don’t look like the average college student with my weirdly contorted limbs and my rather unattractive wheelchair, I really do like to have fun and meet new people.
So you are probably wondering why I am in a wheelchair. I have recently been diagnosed with a condition called Stiff Person Syndrome. Don’t worry, it’s not contagious! Stiff Person Syndrome (SPS) is an extremely rare, one in a million neuro-autoimmune disease. An antibody called GAD 65 attacks the brain, spinal cord, and all of the nerves. There are a few variants of SPS, but the most common tends to be the classical type. It is a spectrum disease with some people mildly affected and others severely affected that it threatens their lives. SPS is a subtype of dystonia, a common movement disorder, that I have been living with for three years now.
These muscle spasms are so strong that they can dislocate joints, tear muscles, rupture tendons and ligaments, and even break bones. As you can probably imagine, SPS causes unbearable pain. The human body is stronger than many of us could ever imagine. Fortunately for me, I have joint hypermobility syndrome, which means that my muscles, tendons, and ligaments are very stretchy. In some ways, it is good and in others, it is pretty bad. It is good in that it is keeping my bones from breaking, but on the flip side, that means that everything is being stretched beyond its limits.
Some days I feel better than others, but when I am feeling okay and caught up with my studies, I enjoy a good time or hitting the gym.
Can’t wait to finally meet you!
Your New Roommate,
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!