For the first time, I was actually excited to start the school year. I was so excited about starting the last year of school I'll ever have. However, the disease I've had my whole life has made another rough start to the school year. Every year, I wish people understood my disease. I wish they understood why I struggle to do some things myself, and how much it bothers me to struggle in front of people as they watch. I wish they knew these things.
To my fellow college students, please read this:
1. It is not just my legs that are weak, it's my whole body.
So many people have asked me why I'm in a wheelchair. They assume it's just because there's a problem with my legs. While that might be the case for some, that's not the reason why I'm in my chair. I have a form of muscular dystrophy, so it affects all of the muscles in my body, and that means it can be hard for me to do some things with my arms too.
2. If you hear me coughing, don’t assume I’m sick.
Like I said before, my disease affects every muscle in my body—even my breathing muscles. Since I'm not breathing the way I should, mucus starts to build up in my lungs and it makes me cough (I know that sounds gross but that's the reason why it happens). Obviously I'm going to cough more when I am sick, but this will happen randomly. I'm not always sick when I start coughing a lot. My breathing muscles have been getting stronger since I started a new medicine, but it still happens sometimes.
3. Elevator buttons are my worst nightmare.
You'll probably see me sitting in the elevator already when you try to go in it. And no, it's not because I like riding up and down in the elevators. I get stuck in there when I can't get to the button I need to push. I can't even count how many times I've had to ask people to push the elevator buttons or try to explain to them that I can't physically reach them to push them myself. If you see me sitting by an elevator or in one when you try to go in it, please ask me if I need you to push the buttons.
4. I’m not moving slowly on purpose.
There are some days where I'm exhausted and my muscles feel like noodles. There are days where I get really cold and it feels like my muscles are completely frozen until I can get warm again. No matter what is going on that day, my muscles don't cooperate with me a lot of times. I might move slow when I'm trying to do things myself. All I ask is please be understanding if I take awhile. It sucks, but it's worth it to me if it means I can do something on my own.
5. You might not see me in class a lot if I’m having a rough semester.
Last semester was the worst one I've had in years. I was getting sick almost every month and ended up in the hospital twice. The doctors eventually figured out why I was getting sick so much, but I usually get sick at least once any semester. Whenever I get sick, it makes my breathing worse so I really have to take it easy until I'm better. So if you wonder if I'm even in that class, that's probably why.
6. If you see me struggling, please ask me if I need any help.
I try to do things myself all the time. I don't like asking people for help, even when I truly need it. If you see that it's taking a really long time for me to do something, please ask if I need you to help me. I'll let you know what I need if you ask. Some people assume how to help me and it makes things worse if they do the wrong thing. And if I actually am trying to ask for help, it hurts when people are walking by me and ignoring me while watching me struggle. It's happened so many times. Please don't be the one who ignores me while I struggle.
7. My chair isn’t always my friend.
My wheelchair will start to break down a lot when it starts getting old. It might start randomly going slow or the whole thing might stop working. Please don't think I stopped in the middle of the sidewalk on purpose. And please don't try to push me without asking me first. It won't work. Please ASK if I need your help with my chair.
8. Don’t forget to include me when you go out just because I can’t get up steps.
I've had so many "friends" who have done this me. It is hard for me to go to college parties and places around the city because of my chair, but it's not impossible. If you really want to hang out with me, we can figure out a way for us to go somewhere together. It takes a little more planning and that sucks sometimes, but you don't have to leave me out. My chair is not an excuse for you not to ask me to hang out. And it means a lot to me if you're willing to figure out a way I can go somewhere with you.
9. My strength changes every day.
I never know how strong I'll be each day I wake up. I either feel really strong or extremely weak. Lately, it's felt like there's no in between. My body is still adjusting to the medicine I'm on. And even though it is helping me gain muscle, when I don't take care of myself, it makes my muscles feel weak now. There will be days where I can't do something I could the day before. And there will be days where I can do something I couldn't do the day or even years before.
My disease definitely makes my life feel like a roller coaster, with all of it's up and downs, but it makes all of the highs worth it.
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