Surviving School Years

July 28, 2000

In a message dated 7/27/00 11:47:37 AM Pacific Daylight Time,

liliwigg@... writes:

> For those of you who have had CMT since childhood - how did you get through

your school years? I cried so much and slept so much both because I was

tired, but also because I was frustrated and angry. Just wondering how

everyone else 'survived'. >>

> Gretchen >>

**************************

Overall I did fairly well in school. I became a wall flower. LOL

I remember when I was in 3 adn 4th grades there were 2 really mean boys that

constantly rediculed me. They called me Crippled Bat. Needless to say that

really hurt me at that young age. However, I was very lucky to also have a

boy who thought I was the cats meow...... He always stuck up for me. (I just

wish he had been in my class to tell those boys off in the class room). LOL

Butch (was his name) not only protected me at school but helped me on my

paper route when the weather wasn't plesant. My parents didn't care very much

for this since I was only 8 years old... LOL But, I sure did like it... I

have always loved men. If there was an elderly man in my dads church, I was

his adopted grandaughter.. LOL.... Then we moved.....

I wish I could find Butch and tell him how much he helped me through that bad

time.

I got along fine with most of the kids, of course no one ever choose me to be

on thier team. But, I knew why... I usually only had 2 friends. Usually

others that were considered lower than normal, like myself.... They were fine

for me. LOL

When I was in Jr. High my parents had to write a note for P.E. because the

P.E. teacher felt I wasn't trying. What she didn't know.... She finally

learned that I was more than willing to do the things I could do (like sit

ups) while the other class mates did jumping jacks. (I couldn't jump).

In 8th grade there was a girl that thought it was neat to beat up on a

handicapped person. So I got beat up regularly. My parents had to threaten a

lawsuit against the school before they would do anything about Myra beating

me up. Even if I could've stood up and fought her I would not have done it.

High School, I loved high school. I think I was pretty fortunate in High

school. The kids didn't treat me bad... They were very supportive of me.... I

had alot of friends, guys and gals in High School.

The guys were so cute and they actually looked at me. LOL The part I didn't

like is that my parents wouldn't let me date until I was 17..... I graduated

at 17 and left home. LOL

I left public school for my Jr & Sr. years and my classmates from when I was

a sophmore thought enough of me to invite me what would've been my class

reunion

if I hadn't been pulled out of public school. I thought that was really neat.

I left one part out...... It was a very dark time. I was going to turn sweet

16 and had been told I could date at age 16 and a young man was waiting for

that date, same as I... Just before my B-day I tried to play soccer and fell.

I hurt my knee very badly. Had water on the knee for months. Needless to say

I never went on that date. A new girl had moved to town and he lost interest

in me..... I was very depressed, once again my disability had screwed

something up.... I found myself taking alot of pain pills for more than just

pain.... My parents didn't know anything was wrong. They didn't know how

depressed and upset I was. I wasn't allowed to show anything like that. What

would the church people think.

I know it all sounds dumb. Looking back it was. But I had it pictured in my

head. Turning sweet 16 and going out with a guy that was very nice and cared

for me enough to ask me out.

Anyway. that's what my childhood with CMT was like. Jeanie

July 28, 2000

Hi, . You just reminded me - " growing pains. " When I was just

a kid, I had severe leg pains a lot. I remember mother always saying

it was " growing pains. " But she rubbed my legs with alcohol until

they stopped hurting. I guess that was a nice massage, but neither

of us knew it. I feel sure it was the beginnings of the CMT, though.

Interesting how we have lived our lives...

Regards, Carolyn

> I didn't know anything was wrong with me as a child. I do remember

going to

> work as a car hop and crying myself to sleep that night. My legs

were in

> excruciating pain. Mother told me she thought it was growing

pains....she

> didn't know anything different at the time. I remember being in a

dance group

> and performing at a half time basketball game and on one of the leg

kicks, I

> kicked my shoe right off......lol Embarrassing at the time, but

everyone

> reacted wonderfully to it. I just thought I was clumsy at

times.....I think I

> was fortunate not to have known about the CMT then, it let me live

a very

> normal life....

>

> from

> IN

July 28, 2000

Hi, . You just reminded me - " growing pains. " When I was just

a kid, I had severe leg pains a lot. I remember mother always saying

it was " growing pains. " But she rubbed my legs with alcohol until

they stopped hurting. I guess that was a nice massage, but neither

of us knew it. I feel sure it was the beginnings of the CMT, though.

Interesting how we have lived our lives...

Regards, Carolyn

> I didn't know anything was wrong with me as a child. I do remember

going to

> work as a car hop and crying myself to sleep that night. My legs

were in

> excruciating pain. Mother told me she thought it was growing

pains....she

> didn't know anything different at the time. I remember being in a

dance group

> and performing at a half time basketball game and on one of the leg

kicks, I

> kicked my shoe right off......lol Embarrassing at the time, but

everyone

> reacted wonderfully to it. I just thought I was clumsy at

times.....I think I

> was fortunate not to have known about the CMT then, it let me live

a very

> normal life....

>

> from

> IN

July 28, 2000

In a message dated 7/28/2000 2:23:45 PM Pacific Daylight Time,

flyingk@... writes:

<< PS. The only big negative of not knowing I had CMT, when I was a child,

was

the tiredness. I would often miss school because of no energy. I fought the

questions from myself " Are you lazy " I also felt a lot of times my mother

thought I just wanted to cut stay home and nothing was wrong with me. I

survived and KNOW I am not lazy and know I dealt with it the best and only

possible way.

from

IN

Well they knew I had CMT and no energy yet my Mother still thought I was

lazy.

jenny

July 28, 2000

In a message dated 7/28/2000 2:23:45 PM Pacific Daylight Time,

flyingk@... writes:

<< PS. The only big negative of not knowing I had CMT, when I was a child,

was

the tiredness. I would often miss school because of no energy. I fought the

questions from myself " Are you lazy " I also felt a lot of times my mother

thought I just wanted to cut stay home and nothing was wrong with me. I

survived and KNOW I am not lazy and know I dealt with it the best and only

possible way.

from

IN

Well they knew I had CMT and no energy yet my Mother still thought I was

lazy.

jenny

July 28, 2000

In a message dated 7/28/2000 6:48:01 AM Pacific Daylight Time,

Grmifo91@... writes:

<< Sorry, I got carried

away.... Blessings to you all, Michele

>>

We all have some great school stories don't we, lol

jenny

July 29, 2000

Life in England during school years was just as bad. I've always had two drop

feet and when I started school I had to wear big heavy orthopedic boots - much

to my dismay. Not long after I started school a kid called ,

teased me dreadfully about the way I walked and about my boots. One day, I

kicked hell out of him. Was sent to the headmistress who sat behind her desk and

said 'Now , I know it was naughty of to say those nasty things

about you and to you, but really dear, you shouldn't have kicked him, you have

really hurt him.

When I went up to Secondary school (aged 11) I was walking down a stone

corridor with a group of newcomers being shown round the school by a boy a year

older than me. He turned and asked why I walked funny. I jumped back about 6 ft

and said I had bad feet and couldn't help it. From that day to the day he left

school, he was my guardian angel.

I didn't fall a lot after I was about 10 but reading some of the emails

these past few weeks has made me think back. I know now why it hurt to play

tennis, why I was hopeless at sport and why I had pains in my hands and arms.

They've now just about packed up, I wear wrist braces and type everything as

holding a pen is painful - but what the heck. Thanks you're a good bunch of

people and have taught me more in a month than I think I would ever have learnt

about CMT in a life time.

Take care

Sue

July 29, 2000

In a message dated 7/27/00 10:03:51 PM Pacific Daylight Time,

mel2mars@... writes:

> I went to parochial schools and I dearly wanted to be in the choir, but

since I couldn't stand up and sit down easily, I had to quit. >>

************

I took choir and did band. I played the Clarinet. In choir I was always put

on the top due to my height. I did ok as long as the person next to me and in

front of me understood I needed to hold onto them at times. So as not to fall.

Band was interesting when I got to high school because we had a marching

band. I had a horrible walking and not being able to look down at my feet...

Somehow I managed but I don't know how... LOL

July 30, 2000

Hi all,

Thanks to everyone for the welcome, all this talk about school has made me

want to chip in (since I just recently survived them)

I was very active throughout school, involved in show choir, band, jazz band,

drama club, and speech and debate. I was lucky that PE class only lasted

thru ninth grade because I doubt I would have survived three more years of

that humiliation... (a, congrats on getting your daughter out of gym,

wish my Mom had done that!) I think the biggest problem I had during school

was shoes! Whenever I was in a play I had to buy my own shoes because I

couldn't wear heels (and most of the time people wear character shoes, 1.5 to

2 " heels) same problem in show choir. I quit marching band after my

freshman year, I was still able to be a part of the band though because I had

an awesome director, I just sat in the stands and played during the games and

sat out during half time, so I didn't end up missing out. During speech

tournaments, we were supposed to be dressed up and I had the WORST time

finding appropriate shoes that were comfortable enough to wear all day long,

but somehow I managed (shoe shopping for prom was a nightmare and a half...).

I think the hardest part of school for me (besides shoe shopping, which

finally got better when I found a naturalizer store that would special order

WW) was that my CMT is mild enough that it's sorta hard to notice, unless I

am going up or down stairs, or attempting to run, or falling down a lot. It

was difficult to explain to other people what was wrong because for the most

part I looked, seemed, pretty " normal " . It was also difficult because I

didn't know much about it (but I'm learning now!). Anyway, some advice for

those who are trying to survive the school years now, just remember, every

kid gets made fun of at some point... take it in stride, and parents, DO

fight for your children when the schools don't understand things like the

fact that it's hard to get from one end of the building to the other between

bells when you are terrified you will be run over by the hundreds of kids

rushing down the hall etc etc.

Also, anyone looking at colleges... they tend to be the worst culprits when

it comes to being accessible and most of the time, no one notices, because

nondisabled people built the schools and they don't notice when stuff is

inaccesible, because they don't have to. Be sure and check out the campus

and make sure you will be able to walk around and get to all the buildings

(be sure to think about what it might be like at different times of the year

too, sure that hill isn't bad now, but what might it be like when it's icy?)

Anyway, I chose a school mainly because it was the only FLAT campus in Ohio

(the state I lived at the time). I knew walking to classes would be tiring

enough, having to hike up all those pretty hills at most college campuses

would have been exhausting!

I suppose I have rambled enough for now. Thanks to all for the info and warm

welcome, and thank you all for letting me know that I am not the only one out

there feeling so tired... I used to feel like I was SO lazy, but am beginning

to understand that fatigue may just be part of CMT... it doesn't make it go

away, but it makes it a little easier to live with somehow...

Kate (in MN)

July 30, 2000