Burtle

Welcome back lovies! By the time of the move to Napoleon in 2012, my cerebral palsy and seizures were invisible to the public. It was great time for me. I finally appeared as normal and I didn’t have to wear braces anymore, or so I thought. That all changed during that summer. I was diagnosed with scoliosis. This was just great. This meant more braces. In the summer of 2013, I started seeing a surgeon for my scoliosis to determine whether I would need surgery or not. Fortunately, he said that bracing would work just fine. For the braces, I went to a specialist much like the ones for my leg. The specialist did all these measurements of me then put me on some sort of stretcher thing like in medieval time and stretched me a bit so that my brace would be longer than my natural torso to stretch it and correct my scoliosis.

Within a few weeks, I got my first back brace and they gave me the wrong one. It was supposed to be a colorful one but, I received an all-white one. Therefore, I tattooed it. I drew everything that I could think of on it. Anyways, I wore it until I got the correct one. When I received these braces, it was in the summer. It was hot as hell. And school didn’t make it any better because at Central, there was no air conditioning. So, I had to wear a t-shirt under my brace and one over my brace and suffer because it was so hot and sticky. During this period, it deepened my insecurities. I had this back brace and kept sweating all the time. I couldn’t participate in gym fully because I couldn’t bend down all the way or bend up because of the brace so, I shouldn’t have been trying to do sit ups but, I did because I didn’t want to be different. Actually, I really can’t do them now because of it. And I even tried out for the basketball team during 8th grade but, obviously I didn’t make the team. Also, the brace was uncomfortable to sit in. The brace went below my waist so, when I sat, it would dig into groin area and hips. The worst thing about it was people kept calling me “burtle” because of my back brace was like a turtle shell and my upper lip hangs over my bottom lip like a beak. I hated it so I’m always adjusting my lip to make them appear more even.

By the time freshman year of high school happened, I didn’t need to wear the back brace during the day anymore. Instead, I got a new back brace to wear when I slept at night much like the night leg braces, I had to wear after I didn’t need to wear the day one anymore. I still had problems with my back so, the surgeon gave me a corset to help support my back during the day.

During this time, I had started marching band in high school. Marching hurt, a lot therefore, I got a doctor’s note to stop marching for a while. It was a sad time for me. I wanted to be on the field, but was the pain worth people’s entertainment? I ended up coming back during the last couple of weeks of the season. I was still in much pain but, I wanted to perform and be with my band family on the field again, so I suffered through it. After the season was over, I went to the doctor and since I was still in pain, the doctor gave me some options to help with the pain: 1. Therapy and 2. Join the swim team. Most of you know which one I picked. I joined the swim team. It was a struggle. I knew how to swim but, somehow, I lost my ability to and had to learn all over again. My sicknesses had become physically invisible by the time I started swimming because I wasn’t wearing braces anymore and we were in the water so, my legs were hidden most of the time. That all began to change. As I mentioned in my last post, swimming was difficult for me. My cerebral palsy affected me greatly. It did, and on top of that, the scoliosis affected me, as well. With the cerebral palsy, I found that the dolphin kick was the best for me. My legs were together like a mermaid and used as one leg so, the kick was easy to me. I also had a lot of upper body strength and a wide wingspan so; the butterfly stroke was my specialty event. I loved the butterfly but, my back didn’t. The worm-like motion of the stroke irritated my back. During meets, I would always swim the fly in the 200-yard medley relay and 100-yard fly. The fly in the relay was the easiest. It was just a 50 and was the first event of the meets so, I would be fresh and ready. Then, the 100 would come. I would always be nervous and because I wouldn’t know if I had enough energy to finish or if my back would be good enough to finish. The first 50 would be easy but, by the 75, I would start having problems. I would be exhausted, and my back would start to hurt. Many times, I would have to stop swimming because the pain was too great to continue. I was embarrassed but, there wasn’t much I could do.

Also, during high school, I was never able to get the all-important, essential flip turns. I could never flip over right, therefore I was at another disadvantage. During my junior year, I decided to try diving. I think it’s because the diving coach made fun of me of missing the wall on a flip turn. Diving was a bad idea. Doing the dives hurt my back because of the twists and turns and I never got the hang of it. This probably affected my swimming as well but, I enjoyed the experience of being on the dive team. As I mentioned in my last post, I played water polo during high school and still play on the club polo team at BGSU. Water polo wasn’t easy for me. First, I wasn’t easy for me. First, I couldn’t egg beat which is the foundation of the sport and everything evolve from that because of my legs, thus, I was limited in my abilities. Next, I was slower than everyone else so, I didn’t have speed as an advantage. Lastly, all the change of direction drills and change of direction from turnovers and defense hurt my back a lot and I couldn’t recover on offense or defense because of the pain and I was already slow with my Nemo leg. Therefore, I didn’t play much and was on the bench for most of my high school career. It frustrated me because there would be times that I wouldn’t play at all in a game or a tournament; I didn’t even play in my last game of high school. One time during our state tournament, I asked one of our coaches if I could make varsity for being a cheerleader because I sat and cheered on the bench all the time. And he gave me some answer like playing isn’t my only contribution to the team or something. I was really fed up and discouraged during that time.

As I was using swimming as therapy, I actually had to go to therapy. I was still having pain in my back (always do) and was having problems with my leg again so, my doctor prescribed me to go to therapy. I was extremely mad because I did therapy for 4 summers before the move and now, I have to do it again?!? I thought that the therapy was dumb and wasn’t effective because I still ended up having the same issues. The positives of therapy that time was that it was in Napoleon down the street from the school so, I could walk over, and it was during the school year, after my lass class. That was great because I didn’t have to worry about it when the summer came. The therapy was a onetime thing but, the scoliosis still causes me trouble. None of the inconveniences are major but, it does have it affects.

First, it hurts to bend over or do heavy lifting. This suck because people expect me as a young man to be strong and to be able to lift and carry stuff with ease. This usually happens at church when the older women would ask me to carry tables and chairs, and pickup items off the ground. Though it hurts, I do it anyways to make them happy and fulfill the masculine expectations. I don’t complain much because when I do, I receive instant backlash. For example, I went to Guatemala during spring break with my fraternity as part of our Ability Experience. We went to help renovate a special education school. One of our tasks, were to build a set of stairs. To do this, we had to make the cement, by hand. We had to get dirt, water, and rocks to make the cement. For the rocks, a group of us had to walk down the road to receive bags of rocks to carry to the school. These bags were heavy and difficult to carry. I made a trip to get a bag and one the way back, my back was killing me, and I stated that I wasn’t going to make another trip. After I said that, one of the brothers told me that he had shoulder surgery and was doing fine. Basically, he told me to shut up and endure the pain or tried to say that his pain was greater therefore, invalidating my pain. Another minor problem this causes is my height. I don’t really know how talk I am because of the scoliosis. My height varies depending on the day and the last time I went to the chiropractor. I usually tell people that I’m 5’10 but in reality, I might be between 5’10 and 5’8. The doctors also have a hard time determining my height as well. During checkup appointments for my other illnesses, the nurses would measure me, and it would say 5’9 and the next appointment a few months afterwards, I would be measured as 5’8. So, I never really know my exact height. Often, I wished that I could have gotten the surgery to correct my scoliosis because it would straighten me out and I would be taller. Plus, I believe that I wouldn’t be in as much pain because the surgery would have cured the scoliosis. One last inconvenience is how sensitive my back is. My back is hypersensitive and it sensitive to the touch. When people touch my back, I freak out because it’s irritating. The doctors have told me that I have to “desensitized” my back but, I don’t want to. My theory is if people don’t touch my back, then there’s no problem. My mom doesn’t like this theory so, every once and awhile, she’d rub my back or touch it and I can’t do anything about. She says that I must desensitize my back because it would help me in relationships. She always asks me what would happen if my future girlfriend would rub my back? And I would tell her that I would most likely allow her to do it but, I feel like my future girlfriend would understand and not touch my back. Also, my friend, Vicky likes to touch my back, as well. She does it differently though. Vicky likes the way my back is curved so; she’d take her finger and go down my spine with it and it freaks me out the most. It is so uncomfortable. One time during stretches for swimming, I bent down to stretch my legs and warned people to not touch my back but, one person didn’t get the memo. Nick touched my back and I balled my fist and swung back and hit him in the groin. I didn’t mean to swing but, it was just an instinct for me, and Nick paid the price.

In conclusion, don’t touch my back (:

Next time, I’ll discuss the illness that plagues me the most , seizures.

Thanks for stopping by and stop by again!

DRG