acceptance at young age

[Guest guest]

Hi Heidi, I have been thinking alot about what you said regarding

acceptance of CMT at a young age or older. When the Dr. told my Mom and

I that I had CMT, what I heard was " shark's disease lol, but I was just

a kid! On the way home we ate ice cream and then I rode my bike until

dinner. A few more Dr. visits and I had a little better explanation -

something about my feet - but then I was confused about the teeth issue,

as I was 'enduring' teeth braces then! My one big fear about this shark

or teeth thing was I going to die, and after a ton of reassurance, I

just kept one foot in front of another (except for that surgery) and

lived without other CMT people around me and just did my life, etc.

When I was about 27, I was reintroduced to a different perception of

acceptance from another disease and recovery program for that. There I

learned that acceptance does not mean anything other than 'admittance' -

not acknowledgment, as I had been struggling with. That realization

opened me up to a greater understanding and also a search for better

medical care, and that I must learn to be pro-active there. I continued

to live my life with both diseases and once I discovered those recovery

steps could be applied to my CMT, life really turned on for me.

Acceptance is a difficult thing - I have had many situations to be

taught this for which I am grateful, as if I can 'accept', I feel

peaceful and calm; also my stress level is 0.

Thank you for sharing this.

~ Gretchen

[Guest guest]

G'day All,

Gretchen's words have inspired me to write whilst reflecting on

my life.

As I was born in 1968 and diagnosed at 3, I did not know any

different. What I mean here is that because I never walked as

a toddler, or ran or rode bikes as a child I didn't really

know any different until schooling. Back then, kids were cruel

(not all, in fact just a few). It is during my school

years I became conciously aware that I was different. I went

to a public school and had working class parents who loved us (My 2 sisters and

I) very

much.

Where my parents treated me equal to my sisters, at school this

was clearly not the case. I was different. Not mentally, but

physically. I had to sit out sports events, except those

designed to cater for me. (crawling races was a common

addition in the lower grades)

I had a great primary school with great teachers and friends.

I walked with crutches from the age of 6, discarded them by the

age of 10. I was a independent little rat!!! My mates took

turns at doubling me to school on there push bikes. They let

me lean of there shoulder to assist with my balance and walking. I had all the

dreams of any kid growing up. I

was going to be a Truckie!!! An 18 wheeler like BJ and the

Bear. (For all you kids out there, Ask your mum or dad!!!)

High School set new challenges. For starters a much bigger

chool. I had to move from class to class. Once again, I had

great friends to support me. At high school I went back to

crutches. I used 1 crutch and 1 friends shoulder. My ankles

folded often and I fell regularly. Teachers became less

dedicated. (they had many more students to worry about). I

was an average kid with a naughty side. I skipped classes

with my mates and done most of the every day growing up things

that many kids did (and do). As I grew older I became

confused, annoyed etc.. at the fact I could not play sport

(every day sport). Sure, after school I rode my skateboard

(sitting down, towed by my mates behind there pushbikes). But

that was about it.I loved vehicles (still do).

My parents noticed my confusion. One day, my Father's

workmates came over our house with this Motor Bike. Well, to

be more precise, pieces ofnmotorbike. They gave the bike to me

and said it was mine. I spent every spare moment working on

that bike. Got it going in no time. Big problem.............

hh that's right, I can't ride. We sold the bike

and bought a Honda ATV (Odyssey)

By this time, I was in senior at school. I joined a ATV club

and started racing. For the first time in my life I had a sport that I competed

in, equal to

others. (I was 17 years of age) My parents spent a lot of

money and time on me and my sport. I progressed up

in classes, had faster machines, tougher battles and bigger

crashes.

It was in 1987 I when I won the Australian Flat Track Titles.

This was one of the greatest of my achievements.

My employment was another great achievement that I am proud of.

I withdrew from racing a few years later and found a beautiful

girl that had an equal attraction to me. My passion for

vehicles had not gone away. I purchased a V8 Ford Falcon.

And with a few mates we went drag racing at the local raceway.

Ah Oh, the bug came back. The Falcon went back in my father's

shed and after several weeks came out with a heart transplant.

Where I lacked muscle, the Falcon made up for it. Raced the car many times.

(anyone interested can contact

me for specifics) During this time, I moved out of home and settled in with that

beautiful

girl I mentioned earlier.

We were engaged to be married when the unbelievable happened.

Some dirty low life had stolen one of the most precious things

I had (No, not the beautiful girl, My Falcon!!!!) The police

found the car cut into pieces with every possible part taken

from it.

I married Kerri. We have bought a house and have a wonderful

daughter named Chantelle. I have now been employed with the

same organisation for 14 years and worked my way up in the

Purchasing and materials management field.

Basically, as I reflect, I say to myself " Its not about CMT or

coping. Its about quality of life "

So far, I reckon I've done alright!!!!!!!!!

Thanks Gretchen for making me sit back and reflect. I hope

others do the same.

[Guest guest]

WoW! talk about de javu (how ever you spell it). You

sure got my attention. i reflect and remember watching

the others play kick ball.( One of my teachers let me hit

the ball and (the fastest boy in class) a friend ran. I

always got a home run. At least i participated. I always

walked with a limp and the older i got the worse the limp

got. (hip dysplasia) I always wore the ugly white

hightop shoes. I had so many operations that my doctor

named his new puppy after me. I always wanted to be an

actress or an archeoligist, or a writer or a singer.

always something that i could be recognized by other

than " that poor little crippled girl " . How i hate that

word. Now I'm happily married and i found what my calling

is . not a actress or singer or anything i dreamed of.

I'm just a Mom. Although i do receive disability i still

find the energy somwhere for my girls. That is something

i won't let cmt take away from me. I just wanted to say

Ray and Kerri your words hit home. thanks for bringing

back memories good and bad. joy