Re: How has CMT made you who you are?

[Guest guest]

It's only just a part of my inner package of who I am. It has added a unique

dimension to my emotional and spiritual strength. It has taught me ways of

working (on anything) by doing the least possible work, to get the best result.

Gretchen

[Guest guest]

CMR has done so much for me. I look at some of these people that I have to deal

with. They have no compassion and carry around arrogant attitudes. I thank God

that I am not them. I couldn't imagine being so wicked. I thank God that I do

not have to walk in their shoes. CMT has helped me to rise above the prejudice

and become the teacher of many.

[Guest guest]

Hi Holli,

Very interesting observations.  I think the impact on me was very similiar,

though the reasons I've attributed may be a little different.

High-achiever - I don't think I felt a need to overcompensate for my

weaknesses, as much as I enjoyed the reward of achievement.  It was something

I could do.  I was aware that everyone had their own strengths/weaknesses, so

I didn't feel lessor.  I just gave more attention to the things I could do well

and ultimately lost interest in the things I couldn't do well, like sports.  

Emphathizer - I don't recall looking at others and analyzing why I didn't need

to be like them.  However, since I was misjudged so frequently, it taught me

to be more sensitive to others, looking at things from their perspective, being

a good listener, and not being quick to judge.  Everything is not black &

white and it's often not what it seems.

Practical  & positive -  Very similar.  Not obsessing about the things I

can't change, just finding a way to cope and then moving on. 

My husband has vision issues and it's made his other senses more acute and also

made him more kind and sensitive to the needs of others.  He also has a very

positive, just accept it and move on, personality.  It's an amazing ability,

much stronger/quicker than mine.  He's teflon, nothing negative sticks.

It is very interesting to examine how lack of ability in one area can enhance

other areas of our selves and our lives.

[Guest guest]

I think about this alot myself. As a child, in grammer school mostly, I was

often picked on my other kids. I remember definetaly being upset by this, but I

also remember feeling that the kids doing the teasing were the one's with

something wrong with them. I was frustrated, because I love basball, but

counldn't run well, but I played anyway because of my love of the gamme.

Later in life, my world became all about ME. I was not dignosed until my late

30's and was not, what I consider a very compasionate person. I don't think we

are ever taught how to react to people with handicaps, and would just look the

other way. After diagnosis, my whole world because a different place.

Today I have compassion for others and am very sensitive to disabilities, and am

very open when asked about myself. Most of my friends these days, have some

type of disability. They often come to me with issues about acceptance. I am

no longer able to work, and sometimes felt useless. That was self-pity.

I am not useless because I no longer work, it gives me more time to help those

around me cope and accept what is happening to them when they feel that way.

My daughter also has CMT1A, and it's difficult for her to watch my progression,

and we work on together together to help each other. To me, CMT has made me a

better person, from the inside out!

JoAnn

[Guest guest]

i work in television so i shoot video but i think my CMT has been helpful to me

because it forces me to make my shots be steady, as steady as possible, and it

makes me look for ways to make it happen that i might not otherwise seek out.

my CMT isn't the most advanced in the world but i wallsurf and that helps a lot

when i'm shooting video.

i'm not the most athletic person because of the agility issues with CMT but i

love to swim since most of the problems are in my legs. it's birthed in me a

larger love for swimming because i feel " normal " when i'm i the water and not

" limited " to what i can or can't do. my sister has similar symptoms to what i

have but she's never been diagnosed with CMT as her preference for now.

swimming is something that we've found that we both like to do together and

mostly for the same reasons.

mish

[Guest guest]

I thrive on doing things - artwork, swimming, gardening. CMT can stop me cold

without warning. Sometimes I hit a wall of insurmountable fatigue. I am trying

to focus on the other end of doing - planning, reflecting, and enjoying things

without moving as much. I am trying to ask for help when I need it and trying

not to blame myself when my body fails me.

Chris

[Guest guest]

what a wonderful outlook at the way you two look at things. i think that is just

awesome. i too have learned to " adjust " to things around me and i too am way

more sensitive to others, but i must say that i am " hard-headed " which many a dr

has told me that that is what keeps me going, i say it is GOD.He has brought me

through SO much.

i was told in 1994 that i would be in a wheelchair within 10 years and Praise

GOD i am still walking, there are times when i am weaker than others,but i still

Thank HIM for those days as well,b/c that lets me know how Thankful i need to be

on days that i don't have that much of an issue.

i didn't start this to be a sermon, but i have been through alot in my life not

just CMT as i am sure everyone in this group has, and it has been GOD who has

seen me through, not my family..i'm sorry to say. but that is a whole other

story..just wanted to say it's Nice to hear that others do see the good in

others still, it's not just me and

that is GREAT! so happy to hear it.. keep up the good work...

as to my weaknesses in school, well i realized that i had them and i also saw

that i couldn't do the things others could but i never knew i had the disease,

so i didn't really see myself as weaker,just not able to do those things, i

could do other things that others couldn't so i guess that made up for it in my

young mind.

i didn't find out that i had CMT til i was 24 years old, and originally they

thought that i had carpal tunnel syndrome,b/c at that time i was working in a

sewing factory,and doing repetitive work,but it was then that i was

diagnosed...i still didn't see it in myself, even then, i went for an additional

10 more years of working in a restaurant, a full course meal of many different

items to cook..what we called " home cooking " we had a cafeteria line,and it was

a restaurant of very good size, so when someone was out i was the one who would

do their work as well as mine, working 10-15 hours a

day....non-stop..sweeping,mopping after cooking all day...doing all the pots and

pans and regular dishes b/c we used real plates...till eventually i had to give

it up, i think that was much worse on me, having to give up my job than all the

work i done...anyway,i again want to say you keep up the good work ..t/c & GOD

BLESS YOU & Your Husband....

tracey

[Guest guest]

KUDO'S to you and your daughter...it's nice that you have someone to talk to

about it,and it sounds like alot of family support, something i have never

had..but it only makes me stronger....tracey

From: Joann <finetuned65@...>

Subject: Re: How has CMT made you who you are?

Date: Saturday, May 8, 2010, 10:57 AM

 

I think about this alot myself. As a child, in grammer school mostly, I was

often picked on my other kids. I remember definetaly being upset by this, but I

also remember feeling that the kids doing the teasing were the one's with

something wrong with them. I was frustrated, because I love basball, but

counldn't run well, but I played anyway because of my love of the gamme.

Later in life, my world became all about ME. I was not dignosed until my late

30's and was not, what I consider a very compasionate person. I don't think we

are ever taught how to react to people with handicaps, and would just look the

other way. After diagnosis, my whole world because a different place.

Today I have compassion for others and am very sensitive to disabilities, and am

very open when asked about myself. Most of my friends these days, have some type

of disability. They often come to me with issues about acceptance. I am no

longer able to work, and sometimes felt useless. That was self-pity.

I am not useless because I no longer work, it gives me more time to help those

around me cope and accept what is happening to them when they feel that way. My

daughter also has CMT1A, and it's difficult for her to watch my progression, and

we work on together together to help each other. To me, CMT has made me a better

person, from the inside out!

JoAnn

[Guest guest]

I often wonder what kind of person (maybe a confident one? Outgoing?) I'd be if

I did not have CMT or at least had known I had it and not always felt like there

was something wrong with me as a child and not having been labeled " clumbsy "

" lazy " etc.   Unfortunately children are like little sponges and they take all

that in and become what they are labeled so I find that even though I know I am

not those things, I am not a real confident or outgoing person. 

I think CMT allows me to " put things in the big picture " (one of my Mom's

favorite responses) I don't fret or obsess about things that just don't

matter.  So often when I hear people complain about small things or get angry

over something trivial I find I say to myself  " Jeez, if that is your biggest

problem today you shoud be very greatful. "   I am glad I am not one of those

people that blows up over nothing..

I find almost daily there are more and more things I can't do and I keep

adjusting, and mourn for the abilities I am losing but just look to discover

new ways to accomplish things.   I think CMT makes you use your imagination to

figure out how to get things done without  " normal " abilities.

Cyndi Saxton

[Guest guest]

The FEAR of CMT, the fear of not being normal and not being loved for

being me, affected me in a thousand ways that would take a book to

unpack. Some of those ways were seemingly good, like excelling in

school, and some not so good, like needing exhorbitant amounts of male

attention in college. Basically, though, the fear kept me from being me.

I was in bondage to it.

I have had an amazing spiritual/emotional healing from that tyranny, and

these days, I am free to be me and I tell CMT who it is and how it will

be, rather than it making me one way or another.

For instance, I was always quiet and introspective before. I wasn't free

to be an extrovert because I allowed CMT to define me as " damaged goods "

and I didn't want to call attention to myself.

Now, I'm just as likely to be introverted as extroverted, depending on

the circumstances.

I use my CMT in ministry to help other people accept their own

weaknesses, and as I love myself, and am vulnerable about my disabled

self, it helps other people to be free to accept that they, too, are

loved even with the places in them that they perceive as damaged. I no

longer see CMT as something that keeps me from loving and being loved.

It's part of the normal range of being human. Disabilities are normal,

and if we all live long enough, we are all going to experience a

disability in one way or another.

CMT doesn't make me who I am. My attitude towards it makes me who I am,

and I have power over that.

Peace,

Lynna

>

> A friend of mine with a very philisophical perspective on life asked

me this question yesterday. My first thought was, " what do you mean by

that? It's made me someone who has poor feeling in my feet and hands and

a bit accident prone. " Then I gave it a little more thought, because of

course, that's not what she meant. What she meant was how have my

differences molded my personality?

>

> After rolling that around a little I came up with a few things. First,

it has made me a very practical person. When I was young I really wanted

to wear the pretty high heeled shoes. It didn't take long for me to

decide that that just isn't ever going to happen. So I would say it has

made me the type of person who steps back, assesses the reality of the

situation instead of the desires for what I'd like the situation to be,

and finds a way to move forward positively.

>

> I like to think that it has made me more sensitive to the idea that no

matter how good someone else's life looks, that looks are deceiving. I

don't have much to show the outside world that I have CMT (they probably

often think I'm a huge clutz, but otherwise appear normal). The person

sitting next to you who appears to have it all probably has his/her own

demons to wrestle with so I don't need to feel bad that I'm not like

them. We all have troubles.

>

> I think it's made me a high achiever. Some subconcious need to

compensate for always being chosen last for dodge ball, maybe.

>

> I thought I'd post these thoughts and see what thoughts they'd inspire

in this group. I'll continue to roll this one around.

>

> Holli

>

[Guest guest]

I have to say, I find it refreshing to hear how all of you have adapted to this

disease and NOT allowed it to run your lives, you all have taken the bull by the

horns and have overcome this disease, I see that we all have learned something

different and new ways to look at things, Thanks to all of you for sharing your

experiences. God bless you all.

Tracey

[Guest guest]

I agree, Tracey! It is very nice to see that the majority had a positive spin on

it. When life hands you lemons, make lemonade!!

Holli

>

>

>

[Guest guest]

Cyndi,

I was not diagnosed until I was in my forties. I also got taunts about being

lazy and clumbsy. I have a distinct memory from the 6th grade when we were

choosing teams for a basketball dribbling relay. Everyone was chosen but me and

Tammy, the girl who weighed about 150 pounds. The other team reluctantly chose

her leaving my team stuck with me. The kids on that team started to wail that

now they were going to loose for sure and it wasn't fair they had to take me.

I got so angry (all internal) that when it was my turn to dribble the ball to

the end of the court and return to hand it off to the next in the relay, I went

as s-l-o-w-l-y as I could. Everyone was screaming at me and I just slowed down

even more. The gym teacher came charging out and yanked me out and made me sit

on the bleachers.

After class he sent me to the principal. The principal called my parents to let

them know I was having a behavior issue (SO unusual for me!) My dad asked what

happened, when the principal finished, his response was: " good for her " . I love

my dad. He came and got me so I wouldn't have to ride the bus that day and I

never got into any more trouble over it.

You're right, it's hard to not just soak up the negatives when you're that age.

I guess I'm really lucky that I had a supportive family. My dad (we now know)

has CMT too. He must have suffered the same taunts and he helped me throught it.

Holli

>

>

[Guest guest]

this is a good question and i enjoyed the responses that i read so heres my

answer to the question, cmt has made me look at life differently than i did

before, i am a driven, bullheaded, dont tell me i cant do that person, i will

always be but now the cmt has made me look at the situation and ask can i do

that, is the pain the next day worth the trouble, so therefore some stuff i cant

do, like shingle our house. I have shingled many houses in my younger days and

i know how to shingle houses properly i just cant get on the roof anymore so we

paid someone to shingle our house and i must say it was hard to watch them do

it.

My life is different in the things i cant do anymore so i do more of the things

i can do and that keeps me busy and happy, i got involved with the things my 2

sons wanna do, cub scouts, soccer, football i was even part of the part group

controlling the head start program my youngest son is in this year.

I went through a period of why me,i didnt ask for this, this is not the life i

dreamed of but it is what it is and i will make the best of it, seeing people

with problems gets my attention and i have gone out of my way to help a stranger

and have had total strangers help me! So this isnt the life we wanted but it

isnt all bad, is it?

August 2009 i had my right leg amputated below the knee because of infections

that would never go away, getting used to this new chapter in my life has been

extremely hard but i keep pushing on and if i can deal with cmt than anyone can,

yes i have good days and bad days but i just refuse to give up!

I would like to say thank you to the group for the info and stories the assure

me i am not the only one who has this,it has also helped with new problems i am

discovering, something else that hurts( i didnt know i had a muscle there!)

anyhow keep up the good work everybody cause i for one use this group alot!

jim

[Guest guest]

Holli,

It is amazing how those moments in our life are still so vividly in our mind. 

I also was the last to be picked for everything. That was always a really bad

feeling.

My 7th grade gym teacher, Mrs, McClain taunted me so much in gym class telling

me " you don't put out any effort " and saying these negative things in front of

the whole class when I knew in my heart I was putting out 150%.  When we were

doing the Presidental fitness tests and it was time for the Broadjump on the

asphalt, I stood there and swung my arms as hard as I could and was determined

to jump as far as the other kids and I jumped, and fell and skidded on my

knees.  they were skinned down to the bone and full of gravely sand and for

weeks I had both knees wrapped in gauze bandages. (and this was when girls

were not allowed to were pants to school) I still remember having to keep

ointment on them and they would ooze but if I did not they would scab and crack

and bleed.  It was horrible.

It is bad enough when the other kids were cruel but this was a teacher!  I wish

we knew then what my problem was and that someone would have stood up for me. 

I am glad your Dad was there for you.

After many years it helped to have a name for what was wrong with me and I feel

I cope quite well  but those memories are burned in my brain. 

Cyndi

>

>

>

[Guest guest]

Exactly.....when life hands you Frozen Feet make Heated Slippers!

Warm wishes,

Re: How has CMT made you who you are?

I agree, Tracey! It is very nice to see that the majority had a positive spin

on it. When life hands you lemons, make lemonade!!

Holli

>

>

>

[Guest guest]

Your letter should be required reading for every school district nationwide.

The good teachers deserve rewards, but the bad ones need to uderstand their

cruelty can affect someone for a lifetime.

Jeanne

[Guest guest]

It has been similar for me. CMT is a strange thing, beacuse it does not make me

very disabled, only slightly. So there is a choice: Try to keep up with the

healthy or resign and become a part of the disabled community. For me, so far,

it has always been to keep up. My motto: " I won't let CMT stop me from doing

what I want " .

Now,this requires a lot of inner strength, and willpower. As my mother says:

" What's not in your legs, is in your head. " If I really want to do it, I can do

it. When I discovered this, CMT became secondary.

When I was younger, I was unsure: Would CMT stop me from having the life I

wanted? But now, at 39, I can see it hasn't. I was diagnosed with some sort of

nerve disease when I was 2 (it later turned out to be CMT) so for me it has

always been there. But I just did things anyway:

I finished high school with excellent results, and could choose any college I

wanted. I became a master of science in microbiology. I got my driver's licence.

I met my partner and became a mother. I live in a very nice area, in a house I

love, near family and friends. I have a great job in science. I have a part time

job as a translator for the European Union.

I have lots of free time too, with lots of excersize, travels and I also attend

a course for writers. I take active part in my son's life. So, I could not

imagine better. But, maybe it would have been different without CMT? I think I

would work more, because I would have more energy. That way, I would miss out on

my son's life more. Now, I can work 6 hours a day instead of 8-10 hours, blame

it on CMT and have more free time. (Less paid too, but I get by anyway, no need

to be richer.)

So I could really recommend CMT! (A bit ironically said, of course, because

there are the negative sides of it; fatigue, balance issues, walking problems,

hearing loss, ignorant people and many other sides). But I think that the doctor

we met last Christmas was right. He came to the house to examine my son's

grandfather who has got a brain tumor.

But since I was there too, and my family, he kind of gave us his opinion about

everybody's health. Me and my son were complteley healthy, he said, after

examination. I thought maybe he hadn't noticed my nerve issues, he was quite

old. So I pointed out that I have got CMT. " Oh, that " , he said, " that's nothing,

you have learned to live with it. "

I started to look at CMT in a different way after that. He had said it so

casually. Before, I thought of CMT as a serious disease, and after, as a way of

living. You really learn to live with it, the hard part is that it gets worse,

but usually not very fast, so there is adaption time.

Beata