Re: Disguising the truth does nothing for CMT

[Guest guest]

Gretchen,

You make an extremely valid point. Yes, this would probably make a

good conference topic. Yes, many of us are missing a window of

opportunity when it comes to educating others.

From experience, I know the reasons why I " lie " about my CMT.

1. I am sick of talking about it.

2. CMT is pretty boring compared a parachuting accident/hockey injury.

3. I *really* like to mess with peoples heads.

4. They don't really care.

Seriously, #4 is the main reason. How many people are *really*

interested when they say " How are you? " Who wants to hear about your

dog having diarrhea, how your kid broke the lamp, and how you've got

this itch that just won't go away?

Personally, I ask them, usually bluntly, if they want the long version

or the short story. Why does my foot look the way it does?

Short: My ankle is basically dislocated...permanently.

Long: All the Genetic Disorder, Muscular Dystrophy, CMT, muscle

wasting, toe curling details.

Asking what version of the story they want allows them to choose for

themselves whether they are seriously interested friends, casually

interested acquaintances, or nosy jerks.

Shaun

[Guest guest]

There's such a thing as a ' Conference'? I didn't know that; that's great!

Yes, this would be a good topic.

[Guest guest]

i agree with you, but it was not until i came to acceptance that i stopped lying

and just matter of factly explained CMT and that I was OK. It took me a long

time to get there, but i would only explain it before to people that actually

seemed to care. now i have no problem telling anyone who asks and i always try

to make the person feel comfortable with it. i don't think people are naturally

ignorant (except for nasty neighbor!) I think people just don't know how to

react; kind of like death, many time people just don't know what to say until

they have been there.

jackie

[Guest guest]

I think that's a great idea, Gretchen!

To the poster who asked if people really want to know how you are when they ask,

" how are you? " I don't mean to strum up controversy, but maybe they do want to

know. And, yeah, you know what, you may have trouble with your job, or your car,

or your kid, but something can still go right? For instance (I can bring up my

life this week...), I was in a car accident on Friday where my car is now

totaled (thank god everyone walked away okay), so I now have to shop for a new

car, everyone at work is MAJORLY stressed, I have finals coming up, plus, I'm

worried about some financial stuff coming up that and I know my budget will be

tight, plus there's like 1,001 things to do for my upcoming wedding.) What do I

say when people ask me how I am? I say " Oh, I was in a car accident this

weekend, but no one got hurt. " or " I'm getting married soon. " Yeah, I'm tired.

Yeah, I'm stressed. But, there's always got to be something going well for you.

It took me a long time to accept my CMT. I've had it since I was 3. I'm 24 now.

But if someone asks me about it. I'll tell them. If someone wants to know if it

hurts, or anything like that. I'll tell them. If someone stares at me like I

have three legs and eight arms, I'll tell them. Or, I just ignore them. I don't

want to be treated differently. I don't deserve to be treated differently. If

someone treats me differently, I'll fight them on it. My CMT has not made me

less of a person.

Gretchen, any chance of ever having an East Coast conference? I'll be

first in line.

Liz

[Guest guest]

I do not disguise my CMT. I'm pretty open about it & will answer any

questions thrown at me. It is pretty hard to disguise my CMT tho 'cuz I

am in a wheelchair.

On a sadder note, on June 7th someone broke into my apartment & tried to

rape me. I was able to summon help via my Lifeline. I came out of the

ordeal fine but he had been badly injured (LOL). He is a danger to

society as he has done the same to a 14 yr old but got out on bail &

disappeared. I feel exilarated that I am able to help her get justice

for her ordeal !!

Kerry/Wisconsin

[Guest guest]

Kerry,

OMG; I am so sorry to hear about what happened to you. Thank goodness you were

able to call for help and will be able to bring justice for the young girl. My

girlfriend had a similar experience 25 years ago, so I can only imagine your

horror.

Jackie

[Guest guest]

I'm 58 and my CMT has probably been noticeable since I was 18 yrs.

Don't think I ever went out of my way to either hide or tell people

about my CMT. ly I never made a point of it because IMO people

will discriminate against someone they see as being " disabled " . Well,

I made a point to the draft board, but that's different. :-)

If they have asked, my answer was usually something like " I have

problems with my feet and legs " . That seemed to satisfy most people.

As someone said, I don't think people really want to KNOW all the ugly

details, they're just trying to seem considerate or strike up a

conversation.

Don't know what I'll do when hobbling around with a cast after

surgery. I'm sure more people will ask, not just because it's more

obvious, but they think it's something recent or traumatic like a car

accident. I'll probably just say " I had surgery on my ankle " .

[Guest guest]

Why I lie about CMT on occasion. (I usually don't tell anyone that I have CMt

unless it's the school.)

I am not CMT, I just have CMT.

I don't have time to explain it.

I don't think it's the persons business.

I like to feel " normal " . People treat me diffrent if I say too much.

I want to keep my private life private.

People really don't care unless the have CMT!

[Guest guest]

I too have kept my " dirty little secret " for many years. Especially in the work

force. Let's face it I am a walking liability when it comes to falling and

dropping things. It probably would be harder to get the job if I let them know

up front. I am sure people thought I was super clumsy and a few actually knew

why. All of my major falls were when no one was aroung luckily like in the

parking lot when I didn't see anoyone around.

When one person found out (from someone else, not me) she would always look at

me with puppy dog eyes and ask " How are you doing " in almost a baby talk way!

Ughhhhh!

Usually when someone asked if I hurt my leg I would just say " Yeah " just to get

by the inquiry.

I now have to walk with a cane if I don't want to trip so it is obvious, but I

am not working and at 52 yrs old I really don't care who knows anymore.

I actually went out to dinner to a nice resturant the other night with friends

(some who know) and left my cane in the car because I wanted to look " normal "

and all night I was looking for the back of a chair to hang on to and was just

wishing I could just go home. I have really become dependent on the cane after

two major falls last winter.

My new catch phrases are " Oh, Well " and " Whatever " .............

Cyndi

[Guest guest]

Hi Gretchen,

I think that part of the ability to explain CMT to someone is self

acceptance and a strong sense of self.

I am completely happy to wear my CMT with pride. I am lucky as I do not have

many external symptoms, I am unlucky in that some people do not realise this is

because I pay very close attention to myself and managing my physical activity

to keep strong, and keep my CMT progress very closely monitored (diagnosed in

2004 it is only then that I got serious about watching myself, and I really got

serious about things in 2007).

I am not sure how you would do this in a conference format. But it sure seems

like there are some inspirational speakers out there who could share their tips

on self belief! I am thinking of Denedria in particular, her book was very

inspirational for me outlining the journey of self awareness she went through.

Best wishes from London,

Donna