Charcot-Marie-Tooth: My School Years After Diagnoses

Welcome back once again to my little story about living with Charcot-Marie-Tooth. Today is a post about some pretty important lessons that I learned while in school after my diagnoses, which was Middle and High School.

After I was diagnosed plus several doctors appointments, while I was in Middle School nothing much changed other than we, (my parents, myself, and the school officials), knew the truth of what was going on with me. I was still walking to and from school (if I took to the long way the walk was over a mile while if I took the shortcut it was only about a third of a mile) though the school offered transportation, I was still expected to par take in gym class and keep going as if nothing was wrong with me. My parents did not allow me to stop doing some task that might seemed too hard, until I tried in a hundred different ways, if there were a 100 hundred different ways anyway, and it was only then if I couldn't complete the task that I could give up.

That was a lesson I took to heart even at that young age. I did not give up easily until I could find no other possible way of trying to accomplish the task before me. Because it was expected of me to try and do whatever was before me, I didn't give up easily and when I finally threw my hands up in defeat, it was usually in frustration. Even to this day I keep working at a task, trying all kinds of ways to accomplish the task before giving up on it completely. For example opening up a small ketchup packet that can be found at any fast food restaurant got to be almost impossible to where I had to start asking whoever I was with to open it for me, until I learned to keep fingernail clippers with me at all times so that I can clip the packets opened. Fingernail clippers are easier to get through some security and doesn't poke a hole in my pocketbook like a small pair of scissors would. Then again using scissors is not an easy thing for me any longer either so I try to avoid small scissors.

At some point during Middle School I was prescribed a pair of AFO's (plastic leg braces). I had such hope for them for the doctor said that they would help me walk better which is what I wanted since that would help be to finally be normal while walking. So I got my AFO's and started wearing them and to me there was no walking better for I believe that I was walking even funnier than before. I felt as if I was walking funnier than before because I felt as if my gait was stiff and unnatural while wearing the AFO's. Then there is the fact that everyone under the sun could see them unless I was wearing pants, and whether they were intentional or not they seemed to stare at me.

After a short period of time I hated those AFO's with such a passion that I stopped wearing them. I felt as if I had a more of a natural walking gait without wearing them and no one could see beyond what they have already noticed what was wrong with me so long as I didn't wear them. By my refusal of wearing them, there were several battles with my parents who only wanted me to do what the doctor said, for they only wanted the best for me, but as a teenager I became stubborn about wearing them. We had arguments over my not wearing them, and I now understand why they wanted me to wear them so badly, but then there was nothing that could get me into them, there was no punishment strong enough and no bribe high enough to get me to wearing them again. My parents finally stopped arguing with me about wearing them.

I made the choice to no longer wear them, and I accepted the consequences of that choice. I accepted that I was going to get into battles with my parents and prepared to deal with whatever was handed down in order to try and get me to wear them. Now as a parent, I understand why they wanted me to wear the braces but then I didn't really care, I just cared about my appearances. That choice was one of the first decisions I made in regards to my own health. This was a choice that taught me that I needed to make the decisions when it came to what treatments I would use. A lesson I still use to this day though when I make decisions about my treatments it is not based on pride or appearance but what I think is the most helpful for me in the long run.

Once I reached High School things did change a little. I lived just under the two mile walking radius for the High School but I was allowed to start taking the bus so that I wouldn't be walking four miles a day just getting to and from school then add to that all the walking throughout the day in the school. The school also had three floors and walking up and down the stairs were something that was getting harder and harder so in my Sophomore year I got a key to the elevator so that I wouldn't have to run up and down the stairs several times a day. I used that key for the remainder of my school years and it helped. In High School things got easier teasing wise because of how I handled it up to that point and probably because I wasn't afraid to explain my CMT to anyone who even hinted at wanting to know.

Also in High School I was also starting to have more problems with gym class so I talked it over with my parents and we all agreed that I should get a medical note excusing me from gym class. I remember that first day of my Freshman year, for on that first day I had the displeasure of having gym class, and my appointment for the doctor was that afternoon. I didn't want to be known as a trouble maker from day one so I decided to make the best of everything. Gym class had four different classes and that first day we were expected to run laps around the big gym for none of the teachers were going to allow anyone to slack off because we were not prepared with a change of clothes.

Since I decided to make the best of everything and to not be a trouble maker, I did my best to run those laps in gym class. I was able to make it around 2 or maybe 3 laps running, though I was slow for while I ran a lap, nearly everyone else was out running me by two or more laps, but I kept trying until I couldn't run no more. When I got to the point where I couldn't run any longer, I went to my teacher to explain why I couldn't run anymore and that I needed to sit down but it was while talking to the teacher that things got really interesting for both of us.

When I tried to tell him that I needed to sit down because I have Charcot-Marie-Tooth which is a form of muscular dystrophy, he told me frankly he heard it all and didn't want to hear it again so that I needed to go back to the running. As much as I didn't want to be known as a trouble maker, I knew I couldn't run another lap without falling flat on my face and I didn't want to start my High School years with a priceless fall like that so I didn't do as I was told. I sat down knowing things were going to go one of two ways, the teacher was going to get after me or he would ignore me completely and have my dean deal with me. My teacher and I got into a verbal disagreement about my running. I took my stand and didn't run again, knowing that I was going to get a name for myself within at least the gym teachers as for being argumentative and disrespectful though that was never my attention.

When my parents got home from work that evening, I told them exactly what happened at school, including my part of the argument with the teacher. I wasn't looking for trouble to be made at school, but only to tell my side of the story before my parents heard about it from the school. My parents were disappointed in me, not because I stood up for myself by sitting down but because I got into an argument with the teacher, who was a teacher and an adult who was responsible for me, though he had no understanding of what was going on. My parents were proud of me for doing what I needed to do to protect myself by sitting down but disappointed in the verbally argument with him for I should have just been quiet.

I didn't realize that my Mom went to the school the next day to clear things up. I only heard my Mom going into the school after it happened for if I knew about it before hand, I would have tried to talk her out of it for I didn't want to also be known as the kid that her Mommy had to fight her battles for her. Now I understand why she did it and would have done it myself if I was in her place.

The day after my Mom went to school I had gym class once again and I was expected to take a copy of the doctors note to the teacher and to apologize for arguing with him. So I took the note to the teacher and did apologize to him for arguing with him but I was surprised for I was also apologized to. The teacher explained that he had heard so many excuses over the years that he chalked up my explaining to yet another outlandish excuse and for that he apologized. I was a typical teenager for frankly I still didn't like him even though he was only doing his job, I didn't like being basically called a liar. I respected him as I should for he was a teacher, I never liked him after that anyway.

So those decisions that I made in regards to my medical treatments, not wearing AFO's and sitting down against a teachers order, really made an impact on me. Those two decisions showed me that I had the ability to make choices in regards to my health, but I needed to make sure I am willing to deal with any and all fallout that may come from my decisions. Though I have the ability to make those decisions, I have since learned I needed to be able to defend my decisions with reason and not pride or attitude.

I have to admit that I started really becoming angry while I was in High School. There were so many things I couldn't do like wear cute heeled shoes or cute flat heeled shoes because my feet were too wide. I was stuck with high top sneakers (the high tops were my way of compromising with my parents for the ankle support) which ruled out cute dresses and such. I was angry because physically I was limited more and more as the time went by so though I wasn't teased I was still the outcast. The anger was something that was done and over with after a few years but it took sometime to get over the anger of being so different from everyone.

In a few days I will talk about my extracurricular activities while still a teenager.