I am the strength behind ataxia

Spinocerebellar Ataxia is a degenerative condition that affects the cerebellum. The main job of the cerebellum is to coordinate the body’s ability to move. Ataxia is a Greek word that means lack of order, and medically it indicates lack of coordination. Ataxia leads to a progressive atrophy of the cerebellum and because of the loss of this quintessential function, there can be wasting away of muscles. Spinocerebellar Ataxia is a rare disease in the U.S today and there is no cure for this disease. It is also a genetic disease which means it was not caused by injury or illness. When I was 13 I was diagnosed with Spinocerebellar Ataxia and when I was 14 and 15 I would always worry about dying soon. Today I don’t worry about death because I have made it this far and I know I can go the rest of the way. I am also encouraged by the amount of research taking place in this disease that might bring a cure or treatments. I have had many obstacles in my life that have been difficult but I have fought through them. People ask me all the time “How I live everyday with Ataxia?” or I hear “if I had Ataxia I would have given up a long time ago, how do you do it?” I have had a lot of days where I have had enough and I wanted to give up and kill myself. Something inside of me told me to never give up and keep fighting. On November 12th, 2010 my high school show choir hosted a Talent Show/Ataxia Fundraiser for me; we had a silent auction and a bake sale. All of the proceeds were donated to the National Ataxia Foundation, to help researchers find a cure. The choir raised $1,484.00 dollars for the National Ataxia Foundation. I found out that my friends call me a best friend and a big sister. I feel honored hearing them call me that. A video was made for the talent show; the video was of me, my mom, and some members of my choir family. The video taught me a lot about myself and members of my choir family. In the video I talk about my struggles, my mom talked about me and my strive to do things, my choir family talked about how much I mean to them and what it’s like to have a friend who has Ataxia. We made the video a week before the talent show and I was not allowed to watch it till the night of the talent show. When it was time to watch the video I didn’t know what I was in for. One of my friends came to sit with me and I’m glad she did. In that 15 minutes I cried so much but they weren’t sad tears they were happy tears because what everyone said touched me so much. I know I struggle through life with this disease but I try to make the best of it. I inspire my friends, family, and other community members. I was recently asked “When they have found a cure for Ataxia would I get the treatment?” I answered “I’m not sure because Ataxia made me who I am today and I would miss my old self.” People who don’t know me or anything about me judge me by what’s on the outside and not what’s on the inside. I don’t let it get me down when people talk about me but when someone who doesn’t know me or my story talks about me or judges me know that hurts. I try to be strong for the ones I love by not showing when I’m in pain, holding in my anger, not letting the names I get called bother me. But the truth is the names I get called do bother me, it’s not good to hold in my anger and any other emotions. I’ve gotten to a point where I feel like I’m not good enough for anyone. Everybody has a hero; they could either be fictional or a real person. My hero is not fictional but a real person. That person is me. I am my own hero because the obstacles I face everyday are a challenge and I strive to be strong for everyone and to never give up no matter what happens. That sounds like a hero to me. I get called people’s hero or inspiration. That means a lot to me because if I didn’t have the best support group behind me I would have no one to inspire. One of the most important things in my life is friendship. My friends mean the world to me and I would be nothing without them. I know I can be moody and I say the wrong things to my friends but I would do anything for them. In the past I have made bad choices in friends but I finally have the best group of friends. Three of my friends have made my senior year an unforgettable one and they have changed my life for the best. Jessica Sexton, Ariana Downs and Diana Smith are my BFFer’s and my little sisters. I don’t know what these girls think of me but I don’t care as long as it’s not bad. I would hate to do something stupid and lose them. It would be difficult to continue living life without them. When I was growing up a boy lived down the street from me. He was either 8 or 9 years old and he had Friedreich’s Ataxia. A blood clot formed in his leg and he had to be transported by helicopter to Duke Hospital. As the doctors tried to remove the blood clot he died. My choir teacher was talking about a book that we were singing a song from and as she explained it I start relating it to my life. The book was called Wicked and she said it was about a girl who got judged all the time and just wanted to fit in. I know that life is difficult, but if we choose to fight through these difficulties instead of giving up it makes life worth while. I don’t know what the future has in store for me and my disease but I do know this I am going to keep on fighting. ATAXIA WILL NOT WIN THIS BATTLE!!!! Because I am the strength behind ataxia.

This entry was posted in Guru, Hope, Support Group, Vivek. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s