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Endless Spinabilities

 

I am honored to have been given the opportunity to share my story in an effort to spread awareness and provide some insight into the life of someone living with Spina Bifida at Walk N Rolling With Spina Bifida. This is a story of strength, courage and overcoming adversity.
It all started 20 years ago in Okinawa Japan. My parents were about to have their third child. Both the doctors and my parents had no idea what to expect. From the moment I was born, the doctors were surprised and confused. I was the first baby to be born with Spina Bifida in Okinawa. The hospitals weren’t equipped to treat me. They didn’t have high expectations for me; they told my parents all of the things I would never do, and to not get their hopes up. My family refused to accept thedoctors’ pessimistic outlook. They refused to give up on me.
Growing up I was your average everyday child, I liked to play and I had lots of energy. Despite having multiple surgeries and doctors visits, I still managed to be a cheerleader, dancer, play baseball and t-ball and do gymnastics. To this day people don’t believe I was able to do all of those things, but I did. Although those activities were specifically for children with disabilities, I had lots of fun, and everyone was amazed at how well I did.
When I was younger, school wasn’t a problem for me. I had plenty of friends and with the help of my teachers, aides,and of course my family, I was able to thrive academically. Even though I used a walker, wheelchair, and eventually forearm crutches, I was no different from anyone else. I was able to keep up with the other students, I was “normal”. Or As I got older, that idea of being “no different than anyone else” began to change.
In 2005 my family moved from Texas to New Jersey. Everything was new and different. I started 3rd grade, I liked my teachers, but the students weren’t like the ones I was used to. I was confused as to why things had changed so much. It had never been this difficult for me to make friends or complete class work. It was especially difficult for me because I began to get singled out and picked on by the other students; it was at that point that I realized that I was in fact different from everyone else.
I found my safe haven during gym class. I was able to do everything the other students did, I had to modify some things but I still managed to do them. During gym I was just another student, nobody seemed to notice or mind that I had crutches. I was even able to teach the students and my teachers different ways to do things. I was happy during gym and finally, I was normal.
My first year of middle school was great. I had a solid group of friends. We only hung out during class, but I didn’t mind. I did well in all of my classes, especially language arts. People seemed to like me; they treated me well and told me how kind and funny I was. My teachers always complimented my ability to get along with everyone, whether we were friends or not. They looked to me to help the students who fell behind I was happy to do so because I like to help people. Everything seemed to be falling together, and I actually enjoyed going to school.
Things started to take a turn in 7th grade, when I got a bad infection from an open wound on my foot. I had to have more surgeries and I was confined to a wheelchair. I was devastated and I felt alone again. I was the same person, but didn’t feel that way at all. Both the students and teachers started to treat me differently, and I couldn’t understand it at first. However, it didn’t take me long to realize that up until that point, I had been able to blend in with the other students. No one really singled me out or treated me differently before, but now that I was in my wheelchair; it was like no one knew how to react. I couldn’t participate in gym class, and the teachers definitely gave me more attention than usual. The other students quickly caught on to the “special treatment” and began to make fun of me. On top of all that, I lost all the friends that I had the year before. I began to dread going to school because every day was worse than the last
In 8th grade I noticed a dramatic change in myself. I became more isolated and shy around my peers. I barely spoke to anyone, not even the students I knew from years before. I could tell that they didn’t see me in the same way. They made fun of me every day, and eventually I started to believe the things they said. Despite all of the negativity and torment from the other students, I was still able to finish the 8th grade at the top of my class.
Starting high school was the most terrifying stage for me. Not only was I going to a new, big school, I would have all new teachers and new students to get used to. To top it all off I was still in the wheelchair. Once again I wasn’t able to participate in gym class, and I began to see my wheelchair as a burden that made me stand out. I felt so different and I didn’t open up to many people, which caused me to feel isolated and increased my shyness. I was finally able to get out of the chair towards the end of my freshman year and most of my sophomore year, but that freedom didn’t last. I had developed another infection in my foot which meant I was back in the wheelchair. During my senior year, I had surgery to remove the infection. I had to learn how to do everything from a seated position. For the most part I managed to adapt to the physical changes pretty well, but the social and emotional changes were much harder to overcome. I was bound almost exclusively to my chair, and was afraid that I wouldn’t be able to walk across the stage at my own graduation. That weighted so heavily on me.
I worked incredibly hard for the rest of my senior year to make sure that the fear I had of not walking across the stage didn’t turn into a reality. There were a few times during the year where I felt like I wasn’t even going to make it to graduation due to everything that I had been put through that year. I’ve gone through life with people doubting me and setting limitations as to what I can achieve based solely on the fact that I have Spina Bifida. I refused to put those limitations on myself. I’m proud to say that I did make it to graduation, and to the shock and surprise of my classmates, teachers, and even myself, I walked across that stage!
I am now an almost 21 year old adult and I do wish I could go back and do things differently. Nowadays I am focused on becoming independent. I am learning how to take care of myself and grow into someone who has something to give back to society. I have a few new challenges as a result of having Spina Bifida. Such as social anxiety, stress management issues and some other ailments. As I learn to better cope, I know things will work out for me. I am blessed to be here. After having close to 40 surgeries, overcoming depression, and bullying, I don’t take anything for granted.
In the future I plan to continue my education and go on to be a child life specialist. I will use my experiences and my story to help as many people as I possibly can. I believe that I can use my life as a testimony to show that everyone, no matter their ability, has the strength within to overcome almost any obsitcle. I used to sit and wonder, “Why am I different?” As if being different was a bad thing. I didn’t realize I’m really not that different at all. I can do anything and everything any other person can do. I just have to do it in a way that works for me. As I get older I know that I will have to adapt to the world around me because the world is not going to adapt to me. I am truly grateful and blessed to be where I am today. Without the help of so many people, such as my family, teachers and my best friend since 5th grade Tawnia, I wouldn’t be here. My dad has always said that your attitude determines your altitude, and I’m a firm believer in that. Instead of sitting around and dwelling on the negative, I choose to embrace my situation, and use it to uplift the people around me. As far as I’m concerned, the only disability you can have is a bad attitude. I don’t know what the future has in store for me but I know whatever life decides to throw my way I will be ready and able to take on and conquer any and all obstacles.

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