Re: wrong mindset, feel shame about myself, due to CMT

[Guest guest]

Caroline,

You may enjoy reading the book " Melodies of My Life " by Denedria Banks. She has

CMT.

http://shopping./p:Melodies%20of%20My%20Life%3A%20A%20Disabled%20Girl%2\

7s%20Journey%20to%20Womanhood:3004601521;_ylc=X3oDMTB1c21tcDhkBF9TAzk2NjMyOTA3BH\

NlYwNmZWVkBHNsawNib29rcw--

Also available at Target

http://www.target.com/gp/detail.html/189-9677219-6019917?asin=0595356818 & afid=ya\

hoosspplp_bmvd & lnm=0595356818|Melodies_of_My_Life:_A_Disabled_Girl's_Journey_to_\

Womanhood_:_Books & ref=tgt_adv_XSNG1060

Both sites have reviews. In addition if you go to our " CMT Book Reviews " in our

Files section, open the folder for a review I wrote.

A very inspirational woman.

Gretchen

[Guest guest]

Oh Caroline,

My heart broke when I read your post. Not only did God create you the way you

are, your name is carved in the palm of his hand. How much more he cherishes

those he has entrusted to carry the burden of his cross! Be proud to be so

chosen!

[Guest guest]

I grew up with a similar mind set. I have trouble dealing with it at times also.

I am so happy times are changing. Medical problems used to be looked on very

differently.

[Guest guest]

You are not a mistake, you are an individual. You have inherited a collection of

genetic strengths and weaknesses just like every other person on this planet.

I always console myself with the thought that it could have been worse. I could

have been a redhead (just kidding you redheads out there)

D Hilliard

[Guest guest]

Hi ,

Thanks for the reminder about our genetic makeup! Unfortunately, I too have

spent the bulk of my life believing I was a mistake, and also that I was broken.

This has been a pervasive belief, and not something that goes away easily.

Your observation is most welcome. Well, except the part about redheads ;P (I'd

become one in a heartbeat if I weren't so chicken about coloring my hair!)

[Guest guest]

Caroline,

Girl hang in there. No reason to be ashamed. This is just one chalange some of

us have in this life. But keep in mind the awesome reward we will have in Gods

kingdom. I know that one day I will see my Dad, my best freind, who also had CMT

& we will both be 100% cured in Gods kingdom, as Daddy is at this time. When

things need to get done as frustrating as it is at times just remember where

there is a will there is a way. it may take us longer but dog gone it if we look

around we will get it done. LOL. Like the old song went " Nothins gonna slow me

down, nothins gonna break my stride, O NO, I've got to keep on movin. " Those

silly words have brought me through a # of things in my life. My stride may be a

bit diferent & slower now days but I will keep on movin. So hang in there. No

one can stop you except you. Have FAITH dear.

Carolyn

[Guest guest]

Caroline

You are not a mistake and I know pain. I hate this wretched thing with all my

heart. I cannot explain to anyone how much I hate what CMT has done to my body.

Hate the disease and not yourself.

[Guest guest]

Auhhhhhh, yes Heaven. one of the many things I will do is DANCE.

Thank you......

Blessings Geri

Ill be seeing you there!

[Guest guest]

Caroline, 

Having a sense of humor really helps as does being in contact with others with

CMT that can understand what only we can understand. 

My sister, in Las Vegas, who also has CMT and is on this list, alway use

to love to watch the cartoon " Rudolph the Red Nose Reindeer " at Christmas time

because we really related to the " Island of Misfit Toys " .  We would laugh about

how we wished we could live there because we would fit in. 

I like to think that the CMT makes me special.  Don't be afraid to ask for help

when necessary.  Most people actually feel good when they can help and are happy

to do it, sometimes they just don't know what we need help with, so just ask. 

Cyndi

 

[Guest guest]

Caroline, I can really relate to that shame that you're talking about. I just

was diagnosed with CMT about a year ago when I was 17. No one really knew what

was wrong with me, and the constant falling and failing in athletics really hurt

my self-esteem. (PE sucks) I was just pushed harder by my father and coaches

because I seemed like I was lazy, not trying and unathletic.

Being told to try harder when I was already pushing my limits was not easy to

handle. I felt like I was a step below everyone around me. It was like I didn't

deserve to hang out with the cooler, athletic kids, and I was lucky when I did.

How some of them liked hanging out with me baffled me, as I thought I wasn't

gifted enough or didn't have as much effort and strength as they did.

Well, with the diagnosis I can say that really changed things. Realizing that I

DID do the best I could feels so unnatural now.

As for healing the shame, well I don't know if I've quite gotten there yet, but

I've ordered a few books about CMTers that I look forward to read.

And Caroline- I'm sure your way cool

-Rob

[Guest guest]

Geri,

Yes sir ree.... I will be Dancing & Running around like a chicken with its head

off as soon as the Good Lord will cut me loose to do so! That is just some of

the things that I really miss. We will surely know each other there.... we'll be

the 2 fools being all kinds of crazy, jumpin around, running & dancing like we

haven't done it in a long time. O yeah that's right we haven't. LOL! Look out

Heaven we're gonna rock your world. LOL! WOW how awesome to be able to do all

the things some take for granted. I know at one time I did.

Carolyn

From: Geri Logan <hotwheels@...>

Subject: Re: wrong mindset, feel shame about myself, due to CMT

Date: Wednesday, June 3, 2009, 9:00 PM

Auhhhhhh, yes Heaven. one of the many things I will do is DANCE.

Thank you......

Blessings Geri

Ill be seeing you there!

[Guest guest]

Wow,

This thread really hits close to home for me, too. I am now in my mid-40's and

spent about 25 years trying to hide the shame, to pass for normal. (I was a prom

princess in High School... that was how well I succeeded at hiding the shameful

secret.) As I aged, into my 30's, I could no longer " pass " and even began using

a hiking staff to get around. (I thought people would think I was just an avid

hiker and that's why I used the staff.) Before long, I had to progress to using

a cane, then crutches, and now sometimes a wheelchair.

IMPORTANT: I have healed from the toxic shame and spiritual lies that left me

feeling so empty and damaged. I am finding deep joy in my life, even though I am

disabled beyond what I ever imagined, and I have a full-time job in ministry

that deeply impacts lives, able-bodied as well as disabled.

How I changed: By sharing my story with other people with disabilities. By

owning up to the fear, shame, guilt, anger, depression. etc. We feel how we feel

and nobody can or should say, " You shouldn't feel that way. " Sometimes, though,

our feelings are based on things we believe to be true, but aren't really true.

We can honestly feel something that isn't true. For instance, I thought nobody

would ever love me if they knew I was disabled and that invalid assumption led

me to be guarded, fearful, etc. When I began to believe that I could be loved

and disabled, I became a much more gracious person, and I have more friends

(deep and meaningful friendships) than I ever did when I was " able-bodied. "

Healing of the shame is possible, and it is possible to come to love our bodies

and our lives with CMT. And it's ok to say, " Sometimes this really, really

sucks. "

Peace,

Lynna

[Guest guest]

I too felt the need to jump in. I was diagnosed at 22 years old and I guess I

never really felt ashamed. I was frustrated and wanted to do what my friends

were able to do, so I just started thinking of ways to adapt, but still join

them in WHATEVER they were doing. Sometimes it was lonely when I had to sit on

the sidelines. I do feel like it impacted me on my career choices and in many

circumstances I felt afraid and nervous.

I never stopped dancing, I just changed the way i did it. I either stand holding

onto a stool and dance or my friends take a stool that rotates right out onto

the dance floor with them and we would dance and they would spin me around and

we would laugh until we cry!

The real trick; surround yourself with people that love you for who you are on

the inside. Everyone I meet tells me that they totally forget I have a

disability once I smile and laugh and tell my stories. I also felt like no one

would love me with this disability, but I was waaaay wrong. My husband of 3

years always tells me how much he admires me and my baggage is less than his but

I just wear mine on my outside.

Is it always a bed of roses? No way. Last night I was putting iced tea back into

fridge completely lost my balance and my son caught me before i went down and

spilled everything. Then when taking the glass of iced tea into my room, I lost

my balance again and my husband had to help me. I got so mad at my body and

thought this was such a simple thing that i couldn't do. Moral of the story:

Iced tea is bad for balance (LOL)

Yes, sometimes this does suck and it is OK once in a while to feel sorry for

yourself, but only share that with people who really love you and will support

you while feel sad.

Jackie

[Guest guest]

My father had CMT, although we didn't know it. One foot was amputated,

he had a 'wooden leg'and a brace on that leg, and the other foot was

also braced. One of my earliest memories is of my Dad 'stumping' every

morning from the bedroom to the bathroom and back. As kids do, we asked

what happened to his foot. My Mom would tell us " He made me angry one

day, so I bit it off! " Of course, she also told us she dated Davy

Crockett and jilted him for my Dad...so we weren't really fooled! After

all, who would turn down Davy Crockett? I also had a brother who was

born severely retarded, had a very severe cleft palate, was missing an

eye, had no pituitary gland and a host of other problems.

As kids, we never really saw our father as handicapped, and I don't

think he felt like he was. Even now, when we speak of our father, his

handicaps usually aren't part of the conversation. We also didn't think

of our brother as handicapped, although, of course, we knew that he was.

He was just our brother. Emotionally we accepted my father and my

brother as 'normal' for them. I guess we owe that to the attitude of

our parents, their sense of humor about lifes' trials. The ability to

emotionally accept others as they are, learned through my parents

example, has been a help to me all my life.

On that note: My youngest daughter used to laugh at the stories I told

about people I worked with and tell me that I had some 'strange

friends'. Then, when she was in 8th grade, she was on a track team and

met her first 'strange friend', a girl who came from a not too wonderful

family and had a reputation for getting in trouble. I think she was

" kinda-sorta " asking me if it was ok to like her since she told me about

this girl in the context of her other friends. They were asking her how

she could stand to be with the other girl for the 2 hours of practice

every day. She told her friends:

" When you have to be with someone every day, you might as well like

them. "

My response was " Such wisdom from a 13 year old! "

We have to be with ourselves everyday, so we might as well like

ourselves.

I wish everyone luck with liking themselves.

[Guest guest]

LOL

You are so right........

Blessings

Geri

Geri,

Yes sir ree.... I will be Dancing & Running around like a chicken with its

head off as soon as the Good Lord will cut me loose to do so! That is just some

of the things that I really miss. We will surely know each other there.... we'll

be the 2 fools being all kinds of crazy, jumpin around, running & dancing like

we haven't done it in a long time. O yeah that's right we haven't. LOL! Look out

Heaven we're gonna rock your world. LOL! WOW how awesome to be able to do all

the things some take for granted. I know at one time I did.

Carolyn

From: Geri Logan <hotwheels@...>

Subject: Re: wrong mindset, feel shame about myself, due to CMT

Date: Wednesday, June 3, 2009, 9:00 PM

Auhhhhhh, yes Heaven. one of the many things I will do is DANCE.

Thank you......

Blessings Geri

Ill be seeing you there!