When I was two and a half years old...

      When I was two and a half years old, I was diagnosed with a disease called Spinal Muscular Atrophy (SMA).  SMA is a disease that progressively weakens my muscles and because of that, I have been in a wheelchair since I was two and a half. It has caused me many uphill battles, but it has made me the person I am today.  People have always treated me different because they see the wheelchair and automatically think I have a mental illness or something contagious when in fact I just have a physical illness.  Going through elementary school was incredibly tough because there was a group of girls who would make fun of me no matter what I did.  I felt like such an outcast and hated going to school every day.  Some people would either torment and make fun of me to my face or I would find out later that they talked behind my back.  Even the people I thought were my friends made fun of me behind my back.  I didn’t know who to trust or who was my friend. People would exclude me from games on the playground because they didn’t want “the wheelchair playing.”  I wasn’t known for my personality, I was just known for my disability; people didn’t think to give the girl in the wheelchair a chance.  I was terrified that no one would ever accept me and I used to get myself sick a lot so I couldn’t go to school.  In middle school things began to change and it got a little better as people began accepting me. However, I still felt like the outcast of the school because I was different.  I had a nurse who followed me everywhere for medical reasons and I felt like that was just another thing that made me different.  The wheelchair was a constant reminder that I was unlike everyone else and as much as I tried to pretend my disease didn’t exist, there is only so much I can hide.

      In the summer going into eighth grade, I had to go into surgery for a spinal fusion. They had to put a rod in my back to straighten it and make it easier for me to breathe. During the surgery, I went into shock and had hives all over my body. Since the doctors had never seen this before, they were not sure if I would make it through the operation.  The pain after I woke up was awful, even with the painkillers.  It felt like I was being stabbed in the back repetitively and the pain would not go away no matter what I did. 

      There was nothing to do while I was lying in bed for weeks, so I began writing stories. It was also the time when music became such an important part of my life.  I love writing stories and my dream is to one day get a book of mine published.  I had music playing 24/7 in the hospital room because it was the only thing that kept me from feeling so alone.  Listening to music calmed me down and distracted me from the pain and doctors coming in every five minutes.  ‘Hold On’ and ‘A Little Bit Longer’ by the Jonas Brothers were two songs that especially helped me through this period in my life.  These songs taught me to never give up, to keep my head up, and gave me hope that things would get better.  It was a very depressing time in my life because I felt useless; I couldn’t get out of bed or do anything.  When the therapists came in one day to get me out of bed I was ecstatic, but the pain was much more than I could handle.  I wasn’t sure if I would make it through that experience, but two weeks later I was released from the hospital.

      Now I get physical therapy ten times a day and regularly go to the doctor to make sure I do not get sick.  This year I was diagnosed with a blood clotting disorder as well as another minor disease.  While a person’s breathing capacity should increase with age, mine has severely decreased and my muscles are continuing to weaken.  High school is quickly ending and college is coming.  I am constantly worrying about my career choice because I don’t know if down the line I will be strong enough to do any of the things I love.  To my dismay, I still worry about what people think of me and try to hide my disease, but I have started accepting it more and trying to help others with the same disease.  There is nothing I can do to change my situation, so I have learned to accept it.  Despite all of my difficulties, I have never been one to sulk in them.  I’ve made some lifelong friends in my high school career and even joined a wheelchair soccer team. I try to make the best of my life, enjoy it as much as possible, and help as many people as I can.  I hate seeing others suffer, so the more I can help others the better I feel; whether it is helping at soup kitchens or brightening a patient’s day at an AHRC center.  I believe that if you can help someone in even the smallest way, the world will be just a little bit brighter and you will know that you have done some good in this world.