Gaining strength through managing a disability
You may know this, but I am going to say it anyway. I have a disability.
There. If you didn’t already know, now you do. Although I have lived with my disability my whole life, sometimes telling people can be hard. And what I just did is something four other Linfield students did this week in “Overcoming obstacles,” on page seven. We all announced something personal to the Linfield community and anyone who happens to read this issue of the Review.
Like the other students I interviewed, my disability is genetic. It is called Congenital Myasthenic Syndrome, and I was diagnosed with it as a baby. It is a genetic disease that weakens all of the muscles in my body so I cannot do a lot of physical activity without having to rest. If I don’t let my muscles rest, especially those in my legs, I will temporarily lose the ability to use them.
Because I was diagnosed at such an early age, I have never experienced life without a disability. It affects me every day even though it sounds worse than it is. The unique thing about the students I interviewed for my story, with the exception of one, is that they know what life is like without all of the medical problems they have now.
Sometimes I think it would have been better to be diagnosed when I was a teenager, like Holly, Paul, Jaymin and Becca, but I realize that isn’t necessarily true. All of them have had to deal with devastating diagnoses that changed the whole course of their lives. I have always known what my life will be like.
They all have positive attitudes about their diseases too, and for this, I admire them. Each and every one of them said they are thankful for the lives they do have, even though sometimes they are more difficult than they would have liked.
Besides knowing other students on campus who struggle with a disability that not a lot of people know about, this story was good for me in another way. After 21 years, I thought I had my mind made up about how it affects me, but my interview with Paul changed that, and I am thankful for his insight. Holly’s interview also made me realize how thankful I am for the people who support me.
The main reason we decided to run this story about students with disabilities is because we recognize there is a group of students on campus who are dealing with extra obstacles to overcome. While we know there are far more students who have disabilities than we interviewed, we chose to focus on just a few so you can get a better understanding of what some go through.
There is no need to feel sorry for any of us because we cannot change what we have; God gave us our disabilities for a reason. I have to say that I have lived a pretty great life. Sure, I can’t really swim without the fear of drowning, walk to Third Street with my friends or finish a popsicle without my face muscles getting tired, but who really needs to do all of those things?
Living with CMS is just something I have to do, so I might as well make the best of it. That’s the outlook the students I interviewed have as well. They all enjoy the daily pleasures of life, and if you look at them, you would never know they have a disability.
That reminds me—it might not look like I have a disability, but if you ever see me walking down the sidewalk and I look like I need a piggyback ride or a supportive arm, I probably do. And the handicap parking permit? Just know it’s legitimate, and that I didn’t steal it from my grandma.