Charcot-Marie-Tooth: My Prediagnoses Childhood



I am so glad that so many have come back to read more of my story. This post is concerning my childhood before I was ever diagnosed with CMT at the age of 11.

During my early childhood we, as a family, moved around quite bit due to my Dad's job (Navy and Civilian). During those early childhood years I knew that I was different from all of the other kids. It wasn't hard to see how I was different for I was clunky, awkward, clumsy, and I ran funny and slower than all of the other kids.

Because everyone who bothered to look could see that I was different, I tended to be teased a lot. Being teased was something that I didn't care for, but with the support of my parents I learned that names couldn't hurt me unless I allowed the names to hurt. I also learned that the more I reacted to the teasing the more I was teased, so I did my best to ignore them all.

No matter how different I was from all the other kids, there was one thing I wanted to do more than anything else it seems like, and if I am going to be truthful I would still love to do this thing even at my age. That one thing I wanted to do more than anything was to roller skate, or maybe I should say more accurately is to learn how to stay up on my feet so I could learn to roller skate. I last put on a pair of skates when I was in my late teen years and hated having to giving up. I was lucky that while growing up I had family and friends who were willing to try and teach me. Unfortunately after a period of time I would give up because I would get so frustrated with not being able to get my feet to do what I wanted them to do. Looking back to those times now I am really amazed I didn't break a bone with all the falls that I took.

Each move the family made one of the first things my parents did was to establish us with a new doctor or in an emergency situation. By getting established with the new doctor it would save time when one of us got sick. At each first appointment my Mom would talk to the doctor about all the differences she saw in me in comparison to all the other kids my age. Each of those early doctors said one of two things: one was that I was just going through a phase that I would out grow at some point, and the other was that not everyone was born with grace.

I can't even begin to understand the frustration that my parents felt during those early years. They knew something wasn't quite right, yet their concerns were constantly brushed off by the doctors. How many parents would have just taken so many doctors word as the truth and never mention it again? My parents, however, didn't stop mentioning it until they finally found a doctor that wouldn't brush them off.

When I was around 8 or 9 years old, one doctor suggested to my parents that I take ballet class for that would help me develop some balance and grace. My parents decided to enroll me in a Mother/Daughter ballet class. I was so excited about taking a ballet class, after all most little girls dreams of becoming famous dancers. Also a part of me wanted that grace and balance so that I wouldn't be so different from all of the other kids. That class that I was so excited about, and had hopes for, turned into a nightmare, or at least my child's mind.

During that class I learned that dreams and reality can be vastly different. Early on in the class the dance instructor wanted all of us to stand in a certain position with our knees and feet touching just right. It seemed as if no matter how hard I tried I just could not do what the instructor wanted and I am pretty sure she was getting frustrated as if she was thinking I was doing it on purpose until my Mom said something. Then we were taught several simple and basic ballet dance moves, yet even those were not all that simple for me to do. I fell a number of times while trying to do the moves. Each time I fell I became more and more embarrassed. I seem to remember that I was the only student, adult or child, who fell at all throughout the class which only added to the embarrassment.

After that class, I begged my parents not to make me go back to that class. Who knows I could have thrown a royal hissy fit, though I don't remember, to make my point that I really truly didn't want to go back to the class. Thankfully whether due to the begging or whatever I did, my parents didn't make me go back to that class. That was the one and only time my parents allowed me to quit some activity after such a short period of time.

All throughout my childhood, before and after my diagnoses, my parents insisted that when some activity seemed really hard that I had to keep tying until I gave that activity 120% of my effort. When some task seemed almost impossible, I had to think of way that might be different to see if I couldn't accomplish the task anyway. It was only after honest attempts that I would be allowed to quit. That is a lesson I have never forgotten and use to it as much as possible.

Those early childhood years were rough they helped shaped me into the person I am today. I learned also to keep searching for answers by talking to various people or doctors until I got answers that I understood. I learned to ignore those who wanted to hurt me with words for I was perfect just the way I was. I learned as well that embarrassment is not something that should stop a person from trying something and it should not be the reason of quitting something as well.

I hope all who have been coming back will continue to do so in the future. My next post will be about the day I was diagnosed with CMT.