Alan Chaulet

Living With an Awful Disability

Ever since I was born, my life has been full of serious disadvantages.
 
My parents were told that I would be an average child living a normal life, up until I reached the tender age of one year old.
 
Our doctor told my parents that I had inherited a genetic disease named “Muscular Dystrophy” that would make my life no longer ordinary. My parents never told me I had this disease until the effects became serious and I had to have a serious talk as to why. This disease meant that I would not be able to build muscle tone properly and that eventually I wouldn’t be able to walk by myself and that I would end up living an unusually short life. I would always feel and be seen as different from that day on.
 
The effects that came out of this disease didn’t affect me until I was around 9 years old. I had difficulty doing simple things by myself such as going upstairs, swimming, and running. Soon, I started getting exhausted extremely fast. My parents never made such a big deal about all this because they feared that telling me all about it would make me incredibly depressed and saddened. I was told nearly everything about how my disease worked and how my life would turn out once I reached the age of 10. I suddenly felt confused, frightened, sad, and depressed. They told me that eventually I wouldn’t be able to walk, run, swim properly, play sports, be seen as normal, and live a long life as compared to everyone else. They also said how the disease would continually ravish and destroy my body at its muscles until I would eventually die at an incredibly young age of around 30 or 40. I would never fully know and comprehend deep in my heart how different this made me from others, until I reached my teen years.

My childhood was filled with happiness because the sheer fact that I had this disease never prevented me from great memories and experiences. My parents were great at raising me with this disease because they didn’t feel the need to restrain me from having a great life by keeping me stuck indoors, but let me experience the amazing beautiful memories, wonders, and experiences that this great world has to offer a person.

I could still manage to walk tiny distances when I was twelve until one afternoon; I was walking around my house and accidentally fell. I attempted for ten minutes to get back up, but just couldn’t bear the strength to do it because my leg muscles had degenerated so much that they couldn’t even hold my body weight without collapsing on their own. I crawled over to the couch and watched TV as if nothing had happened. From that day on, my only form of mobility was just moving in a wheelchair. I felt constantly confused, angry, and frustrated as to how my legs couldn’t allow me to walk. Every time I wanted to do a simple task such as going up or down stairs, go to the bathroom, go to bed, and even to wash myself, I had to have the aid of someone else or else I couldn’t do it at all. I had previously felt somewhat independent and mobile when I could walk for even several feet, but this feeling had completely withered away and disappeared never to be seen again. This affected my whole life because I always felt as if I could never get out of my chair. I fell into an awful emotional state of having no self-confidence, being sad all the time, crying about what I used to do but couldn’t do anymore, and separating myself from the open world. As a result of entering this horrible emotional state, my grades slipped and stayed horribly low for over two years, good friendships were lost, and I didn’t ever want to talk with anyone. I was experiencing this dreadful turmoil up until 9th grade when my old emotional state returned. On a warm spring day in 9th grade, I had an epiphany and realized that I should make the best out of life and not let a physical disability deprive me of all the wonder and beauty that our world has to offer. This moment made me realize that no matter how and when my life should possibly end there are plenty of amazing and wonderful things I have experienced. Nothing can take all that away from me.




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