Re: What having CMT has meant to me

[Guest guest]

Keep dancing,even if it only in your dreams, take it...God bless you too. God is

awesome, as i have stated my dr told me in 1994 that i would be in a wheelchair

within 10 years and i am still walking...maybe not as good but still walking..i

thank him everyday.

Tracey 

[Guest guest]

As I stated before, I'm a raging pessimist.

Having CMT is like having a flat tire on a no-exit freeway: you get a

perspective only the highway crew see, and it's as annoying as heck.

Don't misunderstand - both my children, and I (we all three have the

super-severe form of CMT), are enjoying life. But the CMT we would gladly toss

away in an instant, and all the 'perspective' it bestows upon us, if we could.

Sigh.

[Guest guest]

Hi

(First, are you a chemist Augold? I have a degree in chemistry from a million

years ago. smile)

I, too, have a severe form of CMT, or at least I think it is severe as I am a

wheelchair user in my mid-forties.

It's funny, I dreaded my disability progressing to a point where people would

know (as opposed to suspecting) I wasn't really " normal " . When I started using

a hiking staff (a really cool staff mind you that a real hiker would use on the

Appalachian Trail!), I thought my life was over.

Ten years later, and that staff long ago discarded for crutches and now the

chair, I can honestly say that I don't feel anymore like I have a flat tire when

everybody else gets to zip by in a snazzy sportscar. Sure, there are days when

all of this sucks. (Am I allowed to say " sucks " on this list, Gretchen? smile)

But, overall, I would characterize my life as a roadtrip over interesting

country lanes, and freeways, and rutted roads. Sometimes the vistas are

breathtaking and sometimes the interminable delays on the interstates are

maddening, but overall, it's an exhilerating trip.

And, because I don't zip along quite as fast as some on the fast lane to the

good life, occasionally, I'll see a stranded motorist on the side of the road

and stop to provide aid. It's those moments of giving aid that make my life SO

much better and more fulfilling than before when I was puttering along behind

the others and calling, " Wait for me! "

Sorry if this doesn't make any sense to anybody... I have a way of writing in

metaphors that don't always connect.

Lynna

[Guest guest]

Lynna I love it.Well said.

Geoff in Phoenix.

Re: What having CMT has meant to me

> Hi

>

> (First, are you a chemist Augold? I have a degree in chemistry from a

> million years ago. smile)

>

> I, too, have a severe form of CMT, or at least I think it is severe as I

> am a wheelchair user in my mid-forties.

>

> It's funny, I dreaded my disability progressing to a point where people

> would know (as opposed to suspecting) I wasn't really " normal " . When I

> started using a hiking staff (a really cool staff mind you that a real

> hiker would use on the Appalachian Trail!), I thought my life was over.

>

> Ten years later, and that staff long ago discarded for crutches and now

> the chair, I can honestly say that I don't feel anymore like I have a flat

> tire when everybody else gets to zip by in a snazzy sportscar. Sure, there

> are days when all of this sucks. (Am I allowed to say " sucks " on this

> list, Gretchen? smile)

>

> But, overall, I would characterize my life as a roadtrip over interesting

> country lanes, and freeways, and rutted roads. Sometimes the vistas are

> breathtaking and sometimes the interminable delays on the interstates are

> maddening, but overall, it's an exhilerating trip.

>

> And, because I don't zip along quite as fast as some on the fast lane to

> the good life, occasionally, I'll see a stranded motorist on the side of

> the road and stop to provide aid. It's those moments of giving aid that

> make my life SO much better and more fulfilling than before when I was

> puttering along behind the others and calling, " Wait for me! "

>

> Sorry if this doesn't make any sense to anybody... I have a way of writing

> in metaphors that don't always connect.

>

> Lynna

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[Guest guest]

I would toss CMT away only if I could keep my life experience from it.

In a message dated 5/14/2010 9:53:30 A.M. Pacific Daylight Time,

augold123@... writes:

Don't misunderstand - both my children, and I (we all three have the

super-severe form of CMT), are enjoying life. But the CMT we would gladly toss

away in an instant, and all the 'perspective' it bestows upon us, if we could.

[Guest guest]

I think that CMT is just like any other disability.  I have it along with two

older brothers that have it.  It is all about positive attitude.  My brothers

both handle it differently.  I think my oldest has it the worst right now at

least.  He pretends not to have it while working hard at doing three jobs

including using a chainsaw to cut down trees.  I don't know why he chose manual

labor as a profession, but it seems to keep his mind off of things. 

 

My other older brother complains about it.  He says one of the screws in his

foot is coming loose from a surgery he had as a child.  Although it could happen

I don't believe him because the doctors x-rayed it and told him that it isn't

loose.

 

I try to handle it a little of both ways.  I have orthopedic shoes that help

quite a bit and I feel I'm doing pretty well with things.  I told both brothers

they have to get a pair of them, but they won't listen.  Anyways... that's my

story.

 

 

Curtis

 

 

[Guest guest]

Lynna: I think that was a great analogy. I have seen this happen in my own

family w/ my two older sisters. I am still in " the hope people won't notice "

stage at 57 but know the progression will continue and I constantly try to

prepare myself for what will come....hopefully being able to accept it as

gracefully as my sisters. I try to remain focused on the many blessings I do

have, because they are abundant.

[Guest guest]

Hi ,

You know, I can really identify with your desire to remain under the " disabled "

radar screen as long as possible, I just want to provide some encouragement that

it can be an incredibly liberating experience to be unable to keep up with

everybody else and to be unable to disguise the elephant in the living room. I

know I tried to do that with desperation for years (tried to pass as normal,

that is), only to learn that the " monster under the bed " was nothing like I

feared, snarling and hellbent on my destruction, but really a rather benign,

almost loveable, sometimes playful fellow.

Now, I KNOW that sounds crazy, and if anybody had told me that years ago, I

would have laughed in their face or would have wanted to slug them.

Yet, I am out here, self-accepting, wheelchair-using, and living a full life. It

isn't an easy life, but it has WAY more meaning than the one I lived when I was

relatively able-bodied. Ironically, I always feared that I would experience a

loss of love and relationships as my disability progressed, and instead I've

gained a deep self-love and a wealth of amazing relationships. Now that I am

free to be at ease with my disability, I put other people at ease too, and make

friends easily. Health attracts health, and a healthy woman in a wheelchair is

value-added.

I guess I just want to say that life isn't over even with a disability that

progresses to needing a wheelchair. In very significant ways, it really began

for me as that happened.

All My Best,

Lynna

[Guest guest]

Hi Lynna:

Great words of advice...as time goes on and my CMT progresses I am finding

myself starting to share more w/ my friends and close circle.  Before I got AFOs

people would often ask why I was limping or walking funny. Actually that never

happens anymore but now my hands have begun showing obvious characteristics of

the disease and when asked about that I just tell people I have a genetic

neuro-muscular disease that affects mmy hands and feet and try to leave it at

that.  It is definitely a " process " but I am getting closer and more comfortable

with it as time goes on.

Thanks again for your words of wisdom.

[Guest guest]

Hi ,

You are welcome for my words of wisdom. But what words of wisdom do you mean?

lol. I didn't mean to give advice but just to bear witness to a different

outcome in my own life that might give other people a smidgen of hope that maybe

the things we " know to be true " might be open to different possibilities. (Such

as me once believing that using a wheelchair automatically equated with a

marginalized life as a pitiful, lonely crip. Or me believing that disability was

shameful. Or me believing that people would be repulsed by my disability, and so

forth.)

We buy into thousands of lies that keep us from living abundant, whole lives,

and I'm so grateful to be living in freedom from their tyranny and want others

to know that liberation, too.

I wonder what lies about disability others on this list have confronted and

found to be untrue. For instance, , when you revealed more to your friends,

how did they respond? (My guess is that they were honored by your vulnerability

and it strengthened the relationships. Tell me more, please.)

Peace,

Lynna

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[Guest guest]

Lynna:

Yes, those I have shared w/ have been very compassionate and usually want to

know more.  I tell them it is a form of M.D. to make it easier for them to

understand......my REAL friends accept me for who I am...life is good and I am

blessed w/ many friends and a loving family.

>

[Guest guest]

Hi all,

Hummm what does having CMTmeant to me?  I am 61 and wearing only one AFO and

using a cane for balance since I was 57.  Everyone at work accepts my using a

cane, and some still stare and I still " walk funny " .

No drop foot with the AFO but it sure has caused atrophy in the foot. so I am

still in the bit of denial stage but then again I have days that I think oh well

this is how I was made. So I don't talk to much about it, I don't want pity for

sure.  When we have a fire drill at work, we have to get out of the building

within 90 seconds and I can do it, but not to many people wait for me, LOL

I have a very understanding and encouraging husband for sure. 

So I need to work on more self confidence and try not to " keep up " with others.

Thanks for reading 

Elaine in Florida

[Guest guest]

Hi Eleine,

Isn't it a bit easier when you get older? I think being 39 (but I look younger)

is hard because using aids now signals " disabled " . While using aids when you are

older maybe just signals that you are older... So I look forward to becoming 60!

On the other hand 60 is still young in our society, so maybe I should long to

become 80?

Beata

________________________________

From: Elaine L <elaineangel54@...>

Sent: Wed, May 19, 2010 2:48:08 AM

Subject: Re: What having CMT has meant to me

 

Hi all,

Hummm what does having CMTmeant to me?  I am 61 and wearing only one AFO and

using a cane for balance since I was 57.  Everyone at work accepts my using a

cane, and some still stare and I still " walk funny " .

No drop foot with the AFO but it sure has caused atrophy in the foot. so I am

still in the bit of denial stage but then again I have days that I think oh well

this is how I was made. So I don't talk to much about it, I don't want pity for

sure.  When we have a fire drill at work, we have to get out of the building

within 90 seconds and I can do it, but not to many people wait for me, LOL

I have a very understanding and encouraging husband for sure. 

So I need to work on more self confidence and try not to " keep up " with others.

Thanks for reading 

Elaine in Florida