Re: Educating others about CMT - no lies

[Guest guest]

Good for you Ron....I'm not ashamed of CMT, but ashamed they way people

act..more and more people will have disabilities as they age. I just got mine

when I was younger!

Geri

[Guest guest]

The best way for me to educate others has been to simply state it is a

neuromuscular disorder. Period. Then I have offered a brochure for more

information. This brochure provides a quick overview of CMT. You can find the

free brochures at https://secure.charcot-marie-tooth.org/publications.php 11th

one on the list.

While no one (strangers especially) and certainly not friends, has ever asked me

'what's wrong with me', I have spoken at many meetings and events about CMT and

how I am affected. I offer brochures. But that has been my choice. My long time

friends are somewhat surprised when I mention my work with - they comment

" I had no idea you had this " . Recently, a story was written in an alumni

magazine about me and CMT/CMT and I've had many emails from classmates about

this - all on a positive note.

When Caroline mentioned the 'leg incident' happened at a Church function between

a man and another woman, this is ludricious, completely innappropriate behavior,

perverted and totally disrespectful of God's creation in Caroline's goodness.

Having worked at a Church for years (Young Adult Ministry 18-35) I know young

people can be obnoxius and immature in behavior and thought. In addition to

social events, we incorporated gatherings that included scripture-based lessons

on many aspects of respect and dignity of humankind.

Yes, if I am asked, I will tell the truth about CMT and how I am affected;

however, showing my 'body parts' is not included as this is a boundary

violation.

Too many people are working incredibly hard to bring national awareness to CMT.

Lies, fiction, and myths just destroy good works.

Gretchen

[Guest guest]

I agree, I would much rather have people know the truth then make up stories

about what they think behind my back.

Ron

[Guest guest]

I too made up stories after my surgery....the best story involved an alligator

at a golf course in FL....People are by nature nosy.

Matt

[Guest guest]

People don't care to tell others what CMT is but want the funding and make

people aware.....makes so much sense! Can't have it both ways!! Go figure!

Geri

[Guest guest]

I don't educate people, just like I don't lecture them about the difficult

math I am capable of understanding, but they do not.

I don't live to be an educator, unless I teach in the classrooms and I am

paid and be responsible to teach my students what is structural equation

model.

When I feel happy to share with people about my CMT, I say it.

When I feel happy to talk about a new math model, I say it.

I don't like to repeat talking about or explaining the same math model

because I get bored easily. Because I get paid to teach, I keep on

explaining.

I don't like to repeat talking about or explaining the same CMT because I

don't get paid to explain it.

On Fri, Jan 15, 2010 at 3:33 AM, <@...> wrote:

>

>

> The best way for me to educate others has been to simply state it is a

> neuromuscular disorder. Period. Then I have offered a brochure for more

> information. This brochure provides a quick overview of CMT. You can find

> the free brochures at

> https://secure.charcot-marie-tooth.org/publications.php 11th one on the

> list.

>

> While no one (strangers especially) and certainly not friends, has ever

> asked me 'what's wrong with me', I have spoken at many meetings and events

> about CMT and how I am affected. I offer brochures. But that has been my

> choice. My long time friends are somewhat surprised when I mention my work

> with - they comment " I had no idea you had this " . Recently, a story

> was written in an alumni magazine about me and CMT/CMT and I've had many

> emails from classmates about this - all on a positive note.

>

> When Caroline mentioned the 'leg incident' happened at a Church function

> between a man and another woman, this is ludricious, completely

> innappropriate behavior, perverted and totally disrespectful of God's

> creation in Caroline's goodness.

>

> Having worked at a Church for years (Young Adult Ministry 18-35) I know

> young people can be obnoxius and immature in behavior and thought. In

> addition to social events, we incorporated gatherings that included

> scripture-based lessons on many aspects of respect and dignity of humankind.

>

> Yes, if I am asked, I will tell the truth about CMT and how I am affected;

> however, showing my 'body parts' is not included as this is a boundary

> violation.

>

> Too many people are working incredibly hard to bring national awareness to

> CMT. Lies, fiction, and myths just destroy good works.

>

> Gretchen

>

>

>

[Guest guest]

I don't explain CMT, period.

I am not created by God to explain anything.

I am paid to explain math model.

On Fri, Jan 15, 2010 at 3:33 AM, <@...> wrote:

>

>

> The best way for me to educate others has been to simply state it is a

> neuromuscular disorder. Period. Then I have offered a brochure for more

> information. This brochure provides a quick overview of CMT. You can find

> the free brochures at

> https://secure.charcot-marie-tooth.org/publications.php 11th one on the

> list.

>

> While no one (strangers especially) and certainly not friends, has ever

> asked me 'what's wrong with me', I have spoken at many meetings and events

> about CMT and how I am affected. I offer brochures. But that has been my

> choice. My long time friends are somewhat surprised when I mention my work

> with - they comment " I had no idea you had this " . Recently, a story

> was written in an alumni magazine about me and CMT/CMT and I've had many

> emails from classmates about this - all on a positive note.

>

> When Caroline mentioned the 'leg incident' happened at a Church function

> between a man and another woman, this is ludricious, completely

> innappropriate behavior, perverted and totally disrespectful of God's

> creation in Caroline's goodness.

>

> Having worked at a Church for years (Young Adult Ministry 18-35) I know

> young people can be obnoxius and immature in behavior and thought. In

> addition to social events, we incorporated gatherings that included

> scripture-based lessons on many aspects of respect and dignity of humankind.

>

> Yes, if I am asked, I will tell the truth about CMT and how I am affected;

> however, showing my 'body parts' is not included as this is a boundary

> violation.

>

> Too many people are working incredibly hard to bring national awareness to

> CMT. Lies, fiction, and myths just destroy good works.

>

> Gretchen

>

>

>

[Guest guest]

For me, CMT is not a secret. Structual equation model is not a secret, too.

Do other people want to know what is structural equation model?

Is structural equation model a secret? If people are curious about this

math model, they need to check the books or pay to have someone to educate

them.

Why they don't want to know the math model? Why do they want to know CMT?

Whatever they want to know or not want to know, that is their own choice.

Whether I want to discuss math model/ CMT or not, this is my own choice.

On Thu, Jan 14, 2010 at 8:57 AM, Geri Logan <hotwheels@...> wrote:

>

>

> Good for you Ron....I'm not ashamed of CMT, but ashamed they way people

> act..more and more people will have disabilities as they age. I just got

> mine when I was younger!

>

> Geri

>

>

>

>

[Guest guest]

I like your creative answers, but I also feel sorry about the people who hear

these things and believe them. They might go home and tell their kids that they

met a limping man who got this condition when he was bitten by a goose. Might

scare the kids forever... Ok, that is not very probable, but there is a risk. I

would just say my walking is a private thing, I do not want to share it, sorry.

My standard answer about my walking just changed. It was before: I have got a

nerve disease. Yeah, very boring. But recently, I was asked about my walking by

a kid in my son's class, and I said: I walk this way because I got robot legs!

Of course they wanted to see the robot legs (by then I was surrounded by lots of

kids) and my Blue Rocker braces do have a robotic look, they are shiny blue, so

I got away with it. After this, my son said lots of kids wanted to become

his friends becuase he has got a robot mom! (Yeah, do they watch to many science

fiction shows on TV or what? +  they are 6 years old).

Beata

[Guest guest]

I could never react that way to anyone like that!!!..

Geri

What I am asked the way I walk, depending on my feelings or mood, here are my

responses:

1) I like the way I walk very much.

2) This is none of your business.

3) Is the way I walk very important to your life?

4) Why do you look so ugly?

5) Why are you so fat?

>

[Guest guest]

Teaching others about CMT, without payment of any kind, can be very beneficial

and perhaps even contribute to discoveries about the disease.

However, it should be up to the individual, with no judgement from others, as to

whether or not he/she elects to do so.  It's a very personal decision, one that

may vary throughout one's life.

As for not fully disclosing the true cause of a brace or limp or the like, there

are many occasions when full disclosure is not required and may not even be

desired.  It's much like a situation where an acquaintance casually says,

" How you doing? " and we respond, " Fine " , even when we are not. This is

acceptable and commonplace.  Why?  Because it's up to each individual to discern

whether or not the inquiring person is truly interested - for the right reasons

- and is worthy or entitled to hear our personal revelations. 

>

[Guest guest]

,

The kids in high school had fun spreading rummers about me....saying I was easy

and PG.amoung other things! Of course the old saying of sticks and stones is a

bunch of BS LOL I wish you would have fired the Aide too!

Geru

[Guest guest]

What I am asked the way I walk, depending on my feelings or mood, here are my

responses:

1) I like the way I walk very much.

2) This is none of your business.

3) Is the way I walk very important to your life?

4) Why do you look so ugly?

5) Why are you so fat?

>

[Guest guest]

This actually can be the case sometimes. An aide at the school told her daughter

that I took drugs and messed up my kids. I would NEVER do anything like that and

I know it so it really didn't bother me. However I do wish I had gotten her

fired.

In a message dated 1/14/2010 4:50:32 P.M. Pacific Standard Time,

r.fraigun@... writes:

I agree, I would much rather have people know the truth then make up

stories about what they think behind my back.

[Guest guest]

I have had to explain CMT to way to many people. I have single handily

educated every teacher , school nurse, PE aide, Secratary, Principal etc. At 5

schools for over 12 years. Not mention how many doctors I have educated. I am

sure every one of us has done our fair share of awareness. If some idiot stops

me on the street or at the store I have no moral obligation to satisfy their

curiosity.

[Guest guest]

You do not have to.

This is your choice based on your free will.

>

>

[Guest guest]

Most people on the earth are relatively sick, psychologically.

One man who likes me told people that I am a lesbian because I have no

interest in him.

This is his mental problem which I have no interest to figure out why he

said so to hurt me.

Many psychologically sick people would say things in a sick way.

This is their own problems. Not mine.

>

[Guest guest]

Those that don't want to explain CMT should not take advantage any funding.

Leave it to those that are willing to educate others so that there is an

understanding of CMT, maybe even a cure! Hiding is not going to make it go away

or help us that have it.

I feel if people ask me it doesn't mean they are being nosey....I will give

them a benefit of a doubt!

Someone on this group said that people can look it up......how can one look it

up if you don't tell them what you have? Dosen't make sense to me! Yet most of

the group says they want people to be aware!! If not................ Ok....then

lets be silent and hide!

Geri

[Guest guest]

It is not my obligation to satisfy anyone's curiosity.

On Sun, Jan 17, 2010 at 9:26 AM, <MommyToJase@...> wrote:

>

>

>

>

> I have had to explain CMT to way to many people. I have single handily

> educated every teacher , school nurse, PE aide, Secratary, Principal etc.

> At 5 schools for over 12 years. Not mention how many doctors I have

> educated. I am sure every one of us has done our fair share of awareness. If

> some idiot stops me on the street or at the store I have no moral obligation

> to satisfy their curiosity.

>

>

>

>

>

[Guest guest]

I don't feel like it's my obligation to satisfy others' curiosity, but, in

appropriate circumstances, it is my honor to be vulnerable with my disability...

it helps others to be vulnerable with their own " disabilities " , secrets, places

of shame. I have very healthy boundaries and would be just as comfortable saying

" no " to a request as to say " yes " .

I'm not saying we " should " educate others (ie feel obligated), respond to their

requests to see our disabilities, etc. Just saying that more times than not, in

my experience, those opportunities have been wonderful times of reciprocal

vulnerability and healing. For me, the opportunities have arisen in group

settings at my church.

In turn, I see more and more able-bodied folks becoming more open about their

own " weaknesses " (physical, emotional, relational, etc.). I have seen my

disability, and my openess with it, being used as a potent source of healing for

others.

I am not suggesting that others should feel obligated do the same. I write this

just to share my experiences.

Lynna

[Guest guest]

I use every opportunity to educate anyone, especially doctors or nurses, for my

benefit and for the benefit of the next person that medical people may come in

contact with.  How can treatment for CMT or knowledge of the variations there

are be known if we don't say something.  I have been in the hospital for

situations not directly related to CMT, but I make sure everyone knows I have

CMT and what it is.  It is amazing how many people will then take the time to

look it up to understand what it is, and how it may be affecting me.

Those of us with CMT are the best teachers sometimes, or the one reason a doctor

or nurse will take the time to look it up and educate themselves.  This will

benefit everyone.  Especially if they are my doctors, and they are taking care

of me.

>

>

[Guest guest]

I met a shit in the church group.

The shit, a disgusting man, requested to see my legs.

I don't show anyone anything, unless I feel happy to do so.

>

[Guest guest]

Why not...it reads and will look so intelligent!

Geri

My badge will be ------ I don't owe you an explanation.

On Tue, Jan 19, 2010 at 5:38 PM, Beata Boo <beataboo@...> wrote:

>

>

> I just remembered that in the reastuarant at my work place, there is a deaf

> guy. He wears a sign: " I am deaf, but I can read your lips " . He never misses

> an order, so he is a great lip reader, that's for sure. I think he got tired

> of explaining to every customer that he is deaf, because people are

> impatient, they mumble or look the other way when they speak. So the sign

> made it easier for him to do his work more efficiently. But the sign also

> says: I am deaf and proud of it! (Indirectly.) So maybe we should wear

> badges with: CMT - a nerve disease that affects my gait, but not my brain!

> (Other suggestions for a cool CMT badge?)

>

> My friend wears a badge: " Swine flue survivor " . For her, it has been a lot

> of attention, because a lot of people ask " What was it like? " So badges can

> acctually mean you have to explain more! Maybe the perfect badge is: " I am

> deaf, dont ask me about my gait! " ;o)

>

> Beata

>

>

>

[Guest guest]

That's what I have been told for years.....now my doc is wondering! He never did

answer me though!

Geri

Geri are you CMT type 2?

In a message dated 1/18/2010 4:29:22 P.M. Pacific Standard Time,

hotwheels@... writes:

Those that don't want to explain CMT should not take advantage any funding.

Leave it to those that are willing to educate others so that there is an

understanding of CMT, maybe even a cure! Hiding is not going to make it go

away or help us that have it.

I feel if people ask me it doesn't mean they are being nosey....I will

give them a benefit of a doubt!

Someone on this group said that people can look it up......how can one

look it up if you don't tell them what you have? Dosen't make sense to me! Yet

most of the group says they want people to be aware!! If

not.........Someone on this group said that people can

Geri

[Guest guest]

I just remembered that in the reastuarant at my work place, there is a deaf guy.

He wears a sign: " I am deaf, but I can read your lips " . He never misses an

order, so he is a great lip reader, that's for sure. I think he got tired of

explaining to every customer that he is deaf, because people are impatient, they

mumble or look the other way when they speak. So the sign made it easier for him

to do his work more efficiently. But the sign also says: I am deaf and proud of

it! (Indirectly.) So maybe we should wear badges with: CMT - a nerve disease

that affects my gait, but not my brain! (Other suggestions for a cool

CMT badge?)

My friend wears a badge: " Swine flue survivor " . For her, it has been a lot of

attention, because a lot of people ask " What was it like? " So badges can

acctually mean you have to explain more! Maybe the perfect badge is: " I am deaf,

dont ask me about my gait! " ;o)

Beata