Charcot-Marie-Tooth: High School Extracurricular Activites

Welcome back and thank you for coming back once again to read another part of my story. Today I am going to talk about what I did during my teenage years outside of school for I tried to do everything I could, just like everyone else for at this point I hated being different and really hated having the CMT.

I had been a part of Girl Scouts from as soon as I could join and stayed with them right up until I completed my Junior year of High School. I just had a hard time finding the time for Senior Girl Scout meeting while in High School because of the school work and job plus not to mention it wasn't really all that cool anymore among my peers. All through out my Girl Scouts years, I was able to take part of the camping trips and hikes, though it got harder as I got older. Though it was not cool among my peers outside of Scouts I also found the most acceptance among my peers who were in Girl Scouts.

One summer, between my Freshman and Sophomore year in High School I was able to be a part of a Wider Op (Opportunity) through the Girl Scouts. This was a chance to go to another state with a number of other Girl Scouts from around the country, to camp for a week or two. I found a Wider Op that I was able to physically be able to a part of because I didn't have to be able to meet certain physical levels that was to take place in Wyoming. For the first time I was being accepted for who I was, and I didn't have to deal with the concern and pity from my peers like I did in school.

I have several wonderful memories from those two weeks such as getting left behind on a hike. That was a lesson that I didn't take to heart until I was much older, but a lesson was learned none-the-less. That lesson I learned but didn't take to heart right away was to speak up when I was getting behind in a group, for if I don't speak up then I am going to be left behind and it would be my own fault. Yes, I was left behind because I was too stubborn to speak up, which left me with some alone time to realize that by being stubborn as I was, I could have been in a world of hurt. Sure I knew that someone would come back for me at some point because there were adults who were responsible for me but anything could have happened before that point such as coming across a rattler or fallen. I knew enough to say on the path the others took for that is where I would be found a whole lot easier. Oh I got a lecture from the adult leaders, in private, for I went on the walk knowing that I might have issues but never spoke up so that a buddy would have been set up for we were not to be alone out in the vast desert alone period and that I needed to be more responsible for myself. Well I didn't go on any long hikes like that again and there were other girls who were willing to be my partner from that time on so that I would never be left behind again by myself. It was really the first time when girls my age were willing to hold themselves back a little so that I wouldn't be alone.

I remember other special moments from this two week experience such as playing football with my shoe (my shoe was the only brown shoe that looked like a football), and I was barefoot and I didn't sit on the sidelines for this game. I was an active player, though not good in the slightest little bit, but I played any how. I remember attempting a really rugged overnight camping jaunt, where it was just us girls truly being rugged for we had to make do with what we could grab in a matter of five minutes. I was amazed how much help I needed because of where were taken to camp over night, and I had to rely on the girls who with me more than I would have liked because of all the dips and holes in the area, but all of the girls were so sweet and helped me without making me feel like a burden. I treasure the memory of those two weeks because as I said for the first time it seemed as if I was treated just like everyone else, like I was perfectly normal, and I also learned that it was okay to receive help and that when I could, I could offer help to others.

When I was just a few months shy of my 16th birthday, I got a job at my local McDonald's. This was a wonderful experience for when I was hired I was completely honest about my having CMT, actually hoping they weren't going to hire me, for my parents thought it would be a good idea for me to get a job but I felt that my parents should provide everything including spending money upon demand, so I really didn't want to work. So here my Mom drove me to McDonald's, (for my parents thought it was time for me to earn my own spending money), in order to fill out a job application and surprisingly enough I had an interview then and there. Even knowing that I had CMT I was hired then and there after a short discussion with the store manager I was hired on with the understanding that I would have to speak up if something was beyond my ability but otherwise I would be expected to do everything my job would require.

I must admit, and even admitted it then, that my parents had a wonderful understanding and wisdom in making me get a job for it was really one of the greatest things that happened to me for it was a time when I grew up basically. I was still angry a lot of times, but there was something more with the job, for I was accepted and expected to do certain things. I still remember my store manager, Jerry and assistant manager Pat for it was these two guys who, other than my parents who I wasn't listening to much of time at that point in time like a typical teenager, helped me learn to reach up and beyond the expectations of me. I had a responsibility to my job and there was no excuses allowed in not completing my responsibilities if it was within my reach, and if it was beyond what I could do then I was expected to say so or get help. My CMT was not an excuse I could use just to get out of doing something that I may not have liked, or when I felt like being lazy. Actually I don't remember ever being allowed to use my CMT as an excuse for not doing something for I had a mouth and could use it to ask for help from someone for we all need help sometimes.

The people with whom I worked with didn't treat me any differently than anyone else, and those who did treat me differently at one point, now treated me just like anyone else. I finally had somewhat of a normal teenage years for I worked hard, tried to study hard (I hated school so it was an up and down thing with studying for sometimes I would work hard then other times I would get lazy), and played hard, just like any teenager. Because of my job I learned that I could indeed learn to do almost any job put in front of me and I did it with determination which allowed me to rise up to being a shift manager by the time I was only 20 years old.

Work was something I worried that I would never be able to do because at this time I still wasn't well educated in what CMT was or all the variants that could be a part of CMT. I remember one doctor telling me that by the time I was 25 years old I would be in a wheelchair permanently so with that being the case was work going to be a part of my life which is why I worried about never being able to get a job. Also because of my CMT I worried that I would never find a job that would be something that I could do let alone enjoy it as I did my job with McDonald's. I truly loved working there and not because it was something that everyone did but because it was something that made me feel as if I was giving back to society in a small way.

I would have to say that it was my extracurricular activities with Girl Scouts and working that taught me more about life outside of my CMT limitations. They taught me to be myself and that not everyone was the same because I could accepted for who I was with the CMT. With school I learned that I could make my own decisions in regards to my health and CMT while I learned with my extracurricular activities to be myself. I may not be the same as everyone else but then again who is just like another person. I could be just who I am with accepting my limits and it is okay to ask for help when it is needed.

To be honest I didn't stop being angry for I was angry about having the CMT for sometime it seems. I may have been learning some valuable lessons along but I still didn't like that I couldn't wear pretty shoes. I didn't like that I had to ask for help when it seemed that everyone else could do things on their own, even though I understood that I should ask for the help. I was angry that it seemed as if things were getting progressively got worse with my feet, for I even broke a bone in my foot and didn't know it until I had an x-ray a week later. How can a person be happy when things just seem to be going downhill like that and at the time I wasn't. I worked hard sure, I had time with friends without a doubt, but I was still limited in what I could do. I hated my CMT and the limitations it placed on me. Though I was angry without a doubt but I hope that it wasn't really noticeable to all those around me or if it did then thankfully they just accepted me for who I was.