Re: Surviving the school years...

[Guest guest]

Hi Everyone:

I've enjoyed hearing your stories so far - it's nice to know I wasn't

alone out there as a kid because it surd did feel lonely at times. My

Neuropathy was not diagnosed until I was about 15 but it had been there much

longer. I think I was in fifth grade the first time I remember someone

saying something about it - some girls picking on me because I stomped when I

walked. Prior to that, I had actually been somewhat athletic -never

successful with team sports, but a very active " tom boy. " I was certainly

clumsy, but since I had problems with my eyes too, that was often blamed on

them. In third or fourth grade I was even one of the fastest runners in my

class!! Wow, I can't imagine that now....

My arches had always been hight and somewhere along the line, my left big

toe lost the ability to move up as well as down. It hangs lower than my

other toes and started getting in the way of gymnastics and diving and such

and I kept stepping on it. As a kid, I loved heights and I used to be able

to do flips and stuff off the diving board at our lake. As I lost the

ability to spring off from my toes, I began to come painfully close to the

diving board when I tried these moves and therefore had to stop.. I noticed

the foot drop ever since fifth grade or so but didn't know how to put it in

to words and so it wasn't noticed by others until much later. By Junior High

(middle schl. in many places) I had become one of the slowest runners in PE

and really hated gym class...

Nonetheless, in my town the popular kids were involved in sports and

having felt like an outsider most of my life, I wanted to take up a sport

too. In High School I tried to play Lacrosse because it was a sport that one

could learn at that late an age (no leagues for younger kids). I ran way

behind the rest of the team with my ankles turning several times a day it

seemed. The baseball team that practiced next door would laugh at the way I

ran.. Somehow I actually made it through a JV season with even a few

assists. This sport requires fast running so I'm totally amazed by that -

I'm totally amazed they allowed me to stay on the team.. Anyway, the Lacrosse

experience brought the problem to my parents attention and that's when all

the doctors and tests began. After they discovered the Neuropathy, I didn't

have to take PE for the entire rest of high school! It's pretty funny to me

that one year I was on the Lacrosse team and after that I never had to take

Gym again. I hated Gym so I was psyched. I am still pretty proud of

myself though thinking back on that, that I actually had the tenacity (or

insanity) to make it through all those practices and all with my CMT.

After the diagnosis, they gave me big AFO's (bigger than the ones I have

now), and the style then was jeans that were really tight around the ankles

(a rebellion from bell bottoms) - some even wore socks over their pants to

achieve this look (including me)! To accomadate my AFO's my Mom brought my

jeans to a seamstress and had zippers put in all the ankles so that I could

put my AFO's onm some pants even came that way from the store. It was also

fortunate that High Top shoes and boots were in style because these

accomadated the AFO's well. All my shoes were boots and high tops.

Socially, I had boyfriends and friends but after what I thought was my failed

lacrosse experience, I hung out with the delinquent crowd - I think it was a

learned helpless reaction - we all felt the same way about life at the time,

that somehow we'd been punished or cursed for some unknown reason and nothing

we did seemed to make a difference. I was a bit different than that crowd

though because I never really got in trouble for anything and I did a bit

better academically. A few years later I pulled out of the learned

helplessness, and away from that group, but that experience really helped me

to understand people better... Anyway, back to the CMT, after my first or

second summer with the AFO's - I was too self-conscious to wear them with

shorts and I ended up just not wearing them for many years. They did give me

orthotics too but I didn't wear them that much - I just recently found them

again. My walking did not get better though and the frustration of being

behind everyone despite my best efforts and my foot dragging was pretty

constant. I remember going out to a bar for Halloween with College friends

and being shut off after one beer because of my poor balance - they thought I

was drunk. I was so angry that I made a big stink and got an apology and

free drink but that experience hurt a lot because it reminded me that I

really can't hide my disability.

I remember as a teenager I tried to tell my Orthotist's how I felt about

wearing the big, clunky AFO's and they told me to just " accept my

disability.. " When I went back after college (and had my own health

insurance), the reaction was entirely different: " We don't blame you, of

course you want to wear something that you can wear dress clothes and

non-orthopedic shoes! " Then they gave me some new AFO's - they're not as

supportive as they could be (I may need bigger ones again at some point), but

they do allow me to wear more clothes and shoes with them and I don't feel as

likely to totally neglect taking proper care of my condition. I'm still

working on that now - being more public about my CMT (I probably really don't

have a choice as people will notice anyway I think). Before my CMT, I was

born with cataracts and had to wear " coke bottle " glasses until I was 13. I

was picked on as being the " ugliest girl in the class. " Once I got my

contact lenses, the entire world treated me differently and while I hated

that, I also liked it (getting positive attention for a change). The

glasses had made me painfully shy and I had to learn to socialize all over

again. Sometimes I feel like wearing the AFO's when everyone can see them is

like putting those coke bottle glasses back on - I regress to childhood and

expect that all the teasing and mal treatment will begin again.

When I was diagnosed with the neuropathy, they told me that it probably

would not progress.... Finding out that I have CMT changed that... I do

notice that my calf muscles have really atrophied. I may not have much

longer to have any choice as far as the vanity goes so I'm trying to work on

this acceptance business...

I will say I am SOO glad to be done with school!!

Sorry I've rambled on so long.. I like the topic. : ) Marti