teen CMT

[Guest guest]

Hi Bethany!

Your condition is just as mine. I am glad you joined this group.

I am 17 year old girl from India and I myself wonder about my

future and marriage etc. My walking is very unstable and I need

help for walking and climbing stairs. At present the situation

is such that I always need a helper, specially, while climbing

stairs or even simplest market chores. At times, I feel very

dependent, but then, as you said, there are people worse off

than ourselves. But then, I feel, CMT affects everything! I

mean no part is spared.....walking, hearing, holding, curved

spine, talking, eyes......really, how can anyone understand all

that we have to go through?!! I know these are very negative

thoughts...I myself am a very self-conscious person, but

people's stares don't really affect me anymore. I just feel

irritated when I am unable to go around independently like

others.....when I have to wait for someone to come and help me

move from one place to another. I am trying for AFOs, maybe they

will improve certain things.

One other problem is that if I talk to someone about CMT or

joke about it, the other person thinks that I am being

self-piteous, whereas that is not at all the case! I know I

have to live with CMT throughout my life and have accepted it.

But that doesn't mean that I don't have any apprehensions about

future. I, too, miss leading a normal life. It’s really

embarrassing when you are unable to lay table for dinner

properly or eat with full good manners at a party.

I guess, talking about all this is never going to help. Of

course, one gets moral support; and in certain corner of the

heart, it feels good to know that there other people in world

going through the same things as I am. But for us, the best

weapon is a ‘positive attitude’. I have, for the time being,

forgotten concepts like marriage……if it’s on our cards, it’ll

happen. I have just one wish…..I should be COMPLETELY

INDEPENDENT. And if there is one thing that’ll help me in that

direction, it’s money. It’s only with money that I’ll be able

to purchase all equipments I might need in future and it’s money

that’ll boost my self-confidence. I know it sounds too

materialistic, but believe me, materialism will help us

ultimately. Even in winning friends.

Being funny about your own problems always helps you see things

in a lighter perspective, my elder brother ( he also has CMT)

has taught me this very well. You, too try it….it really does

help. For example, when you notice people staring at you/your

walking, start talking to yourself in lines like “Ah! Here is

another person who has no job at hands, is unemployed and a

complete dumbo who can do nothing other than staring at others!”

Slowly, you won’t even notice those ‘maniacs’ staring at you!!

We have all gathered hereas we are doing great at present, so

our future has friends. There are good reasons for

bringing Bethany, Reema and everyone else to this earth.Do write

back.Thumbs up!

Reema