“Don’t pray for an easy life. Pray for the strength to endure a difficult one.” —Bruce Lee
Recently I have had a hard time accepting the world for the way it is. The world is not always a kind place, sometimes especially to people who have disabilities or other challenges. I don’t say this because our lives may be harder. No, as we all know, so many blessings come from leading a life of adversity. I say it because of the views that people have on the lives of others who deal with adversity.
In biology class, we are learning about Duchenne muscular dystrophy and the ways that the people who have DMD are affected. I am naturally interested in this topic as I like learning about other disorders/disabilities and the muscular system. Also, cerebral palsy and Duchenne muscular dystrophy share some similarities.
If you don’t know, Duchenne muscular dystrophy happens when the protein dystrophin is genetically altered. Dystrophin is a muscular protein that protects and strengthens muscle fibers as muscles contract and relax. However, there is either a lot less dystrophin or a total lack of it in people who have Duchenne muscular dystrophy. People with Duchenne muscular dystrophy have a lot of creatine kinase, which is an enzyme that stores energy for myocytes to use during contraction. However, when people who have DMD exercise, the cell membrane tears, causing creatine kinase to leak out of the cell and into the bloodstream and the muscles to atrophy. DMD is a degenerative condition, which means it gets worse over time. (People with DMD generally live until their mid- to late twenties to early thirties.)
On the other hand, people who have cerebral palsy (CP) have a usual life expectancy, except for in rare cases. Cerebral palsy is not degenerative, but it could be considered progressive. People with CP move in an unnatural way that is very hard on the body. Eventually, this can cause joints and tissue to break down. Over time, aches and pains get worse because the muscles are too spastic and tight to move and stretch.
Ultimately, both conditions result in more limited mobility (even slightly) and ambulatory devices such as leg or ankle braces (AFOs), walkers, canes, crutches, and wheelchairs are common. Most people think that CP and DMD reduce quality of life. It’s true that CP can be hard to live with sometimes. I am in a lot of pain and it is difficult to move around, but my quality of life is amazing. Even on my most painful days, there is no part of me that wants to cease the will to live.
That’s probably why I was so mad in Biology when a boy said, “If I had DMD (or if my muscles didn’t work) then I’d kill myself.”
It might sound a bit odd, but the first thing I thought of was the book Wonder by R.J. Palacio. In the book Wonder, the protagonist, August “Auggie” Pullman, has several craniofacial differences that cause him to be judged by his classmates. Gradually, his classmates learn the lesson “don’t judge a book by its cover”, but his classmates had no idea what Auggie’s life was really like and viewed it negatively. Specifically, I thought of the scene where the class was dressed up on Halloween and the character Jack, who was dressed as a mummy, said: “If I looked like him, seriously, I think I’d kill myself.” Auggie described, “I felt like I’d been kicked in the gut.” In that moment, I felt the same way.
The boy in my Biology class saying, “If I have DMD, then I’d kill myself,” was probably a knee-jerk reaction. People fear the unknown. With DMD being degenerative, it could mean a loss of independence. Most kids my age have no idea what it’s like to depend on other people for mobility. DMD leads eventually to death. I guess the boy meant that living a shortened life knowing that independence would decrease until an early death would be scary. No matter how early death comes, life is beautiful while it lasts.
Who are we to judge someone else’s quality of life? If you don’t live that person’s life every day, if you don’t feel what that person feels, how could you choose to end the person’s life automatically? How could someone diminish what someone else’s life is worth just based on a diagnosis? As I say this, I know that there are others out there who would feel that they, too, would end their lives if they had a potentially devastating diagnosis. But how could you make that choice if you don’t know what it’s like to live that life?
I guess I was affected by the boy’s comment on a more personal level as well. Often, I feel like it’s my job to advocate for all people with disabilities—not just people who have CP.
No, I don’t know what it’s like to live with DMD—but I do know how it feels to have a loss of independence.
I know what it’s like to not be able to keep up with others your age.
I know what it’s like to be in pain every day—pain that is constant and stabbing.
I know what it’s like when your body does not do the things you want it to do.
I know how it feels when it seems that your body should be able to support you, but it’s buckling instead.
I know what it’s like when others judge you based only on your condition.
And, by the boy’s statement that he would kill himself if his muscles didn’t work, I felt personally impacted. My muscles don’t work the way that most other people’s muscles do. That’s okay. But what I don’t know how to deal with is someone assuming that my life isn’t worth living.
I don’t understand how people could think that my life isn’t worth living.
My life is worth everything to me.
And yes, having CP has given me a lot of challenges—probably more than my fair share. But CP has also given me an abundance of blessings, and I should never forget that. I hope I never do.
Because of CP, I have gotten to meet people that I consider family. I have gotten to write for many platforms such as The Mighty, The Cerebral Palsy Foundation, and MSN. I have been gifted a bike by the McLindon Foundation and have been featured on WAFB. I don’t say this to brag, but to demonstrate that having CP isn’t the awful life sentence that some people might assume when faced with the facts of the diagnosis.
Even if I had not have had the opportunities to write and share my story, there are so many simple things on a daily basis that are worth everything to me. Laughing with my family. Going to school and learning new things. Talking with my friends. Hanging out with my twin sister. Playing with my beagle (who is quite possibly the most adorable dog in the world). Writing. Swimming, which is the most freeing feeling I can imagine.
My life is very difficult sometimes. I feel like I didn’t get as much of a chance to be a kid—I couldn’t run or do physical activities very well and I am always going to doctor appointments and such things. But just because I may be frustrated with what is hard for me doesn’t mean I’m ready to give up on my life. And I’d be willing to bet that people who have DMD feel as though their lives are worth everything, too, no matter how hard having DMD is.
The fact of the matter is that we, being humans, can only work with the cards we’ve been dealt. There is no reshuffling, no quitting the game. Some people’s deck contains a DMD diagnosis or cancer or CP or another difficult circumstance. But it doesn’t mean we give up. And it doesn’t mean that just because we got a hard deck, we quit the game. Life doesn’t work like that.
I felt like maybe the boy knew himself—maybe he couldn’t handle life with a lifelong challenge. I didn’t know if he could walk in my braces, if he could spend hours upon hours practicing how to write, how to climb stairs, how to stand up. I don’t know if he had the perseverance to try to keep up with his peers even though he would fail, to deal with people’s negative comments, to face insecurities about something he couldn’t help. And even though I have had to work hard and I struggle with many physical things, there is so much I am able to do. My life is so far from worthless. No one’s life is worthless. But I find myself wondering if the boy could truly handle mine—and still realize, through all the challenges, that there are countless rewards and blessings.
Someone can live an extremely amazing life while having a disability. You don’t have to overcome your disability, or challenge, or condition, to live an awesome life. Please think twice before assuming that life with a disability is awful. All lives are worth something. To me, life is worth everything.