A personal question really got to me

[Guest guest]

I was at the local ceramic store today. The owner knows me a little from

going to her store now and then. So today she asked me if my handicap was

genetic and if only girls got it because she could see that my daughter had

trouble walking too. I could feel the blood drain out of my face. My daughter

look pale as a ghost when this was said.

My son Adam was with me, he has AFOs and he just sat there like the cat that ate

the canary. Just waiting for his turn to be noticed I think. We had my friends

son with us. I was afraid he would out Adam to this woman. But he didn't say

anything he was so busy painting.

My Mom had been in their a few mins before I got there. Maybe my Mom opened her

big mouth and started this conversation?? I think I held it together. I just

said yes its genetic yes my daughter has it a little.

I told her the name of it when she asked and didn't give her much more

information.

I was wondering/hoping that she would tell me she had something genetic or

had a loved one with a genetic problem. Anything to give her permission to

cross the line of social graces the way she did. Blah nope not a word about her

personal life. I take stuff like this very personally.

I leaned over when she left the room and told Adam that educating people about

CMT was not a bad thing. Then I sat in my car and sulked. Blah.. To make matters

worse Adam and were both trying to get out the door and into the front

seat when Adam tripped. He fell and almost broke his ceramic cat. So I am sure

now the lady has a pretty good idea Adam has CMT too. Why do I care what she

knows? Have 3 hours for me to explain!?

[Guest guest]

:

One of the parts that made me most gasp in your explanation...was the 'is

your handicap genetic " So much for informed and inclusive opinions in

society. From listening to everyone on the various web pages it is so

clear that people coping with syndromes like CMT are far less 'handicaped'

members of society at large than many. They daily face head on and

constructively the types of challenges that would make many curl up and give

up. If we had more politicians and leaders that had learned to manage those

sorts of challenges, the world would be a far better place.

And how unbelievably insensitive to raise the issue in front of .

Sometimes it gets to me when people weekly ask " How's Gavin?' in front of

him. .I know that it is because they care, but sometimes it feels like

rubber-necking an accident.

You should check with your Mum about whether she had said something. I had

an issue with my family speaking to their friends about our dilemma of

paying for OT for Gavin (not covered by our insurance). I know they were

worried and care but our personal details do not become public because of

this diagnosis. I had to specifically indicate that it was not their place

to discuss this with anyone without our permission.

I think it sounds like you handled it brilliantly.

Cheers

Sally

[Guest guest]

I understand exactly where you are coming from. It happens all the time to me.

then they think it is a big joke. Oh CMT -- Country Music Television?? haha

I wish it was that easy. Thank you for sharing.

Laurie in Sarasota

Please visit our new Clothing Poll and give us your input.

/polls

[Guest guest]

Thank you Sally,

I handled this the best way I could. I was caught so off guard. I hope this

never happens again. It is truly my Achilles heel. I have always been afraid

of running into people that have genetic prejudice. If only the world was a

better place. I talked to my Mom and she said she hadn't said anything. So it

looks like this lady just had a lack of social graces.

[Guest guest]

Sally,

I am so glad you said this. There are many problems that people have that

are not considered handicapped but the problems do handicap them. I am thinking

of several now.

[Guest guest]

, for 20 years, I am 62, I have been subjected to many situations that you

encountered. Most have been sincere questions concerning CMT and at my age I can

handle the " other " situations (the stares, the over sympathizers, embarassing

moments, untimely or unwarranted questions, etc.). As in your case, the

inconsiderate person. It will not be the last time your family will be subjected

to these people, intentionally or not, it hurts, I know.

I gave my grandson a simple, short explanation for the two questions he will

hear hundreds of times in his life: What is wrong with you?(kids and " adults "

ask this question) and What is CMT?

Good luck from one who has been there,

Sparkye

[Guest guest]

,

I get asked questions like this quite often and it always seems to infuriate me.

I've been

asked everything from the simple, " did you break your foot? " , to " what's wrong

with you? " ,

to " do you have anorexia; you're SOOOoooooo thin! " . It amazes me that complete

strangers would have the nerve to ask me questions like these, quite often in

fromt of

their own children.

I swear, one of these days I'm going to lip off to someone that they're setting

an extremely

bad example to their children that it is socially acceptable to point of the

flaws of other

people, but so far I've bitten my toungue.

A friend of mine and I have agreed this is an entire Dr. Phil show in and of

itself.

I've even had multiple people go so far as to actually grab my hand, encircle my

wrist with

their fingers and exclaim that they can't believe how skinny my arms are! If

there's

anything that has made me never want to wear anything other than long sleeves in

public

again, that is it!

And, I agree with what you said about sitting there waiting for the woman to

openly say

something about perhaps a family member of her own with a disability. It's

blatantly

obvious when someone asks out of concern, compassion, or genuine caring, versus

the

person who asks because they get some sort of disgusting ego boost by feeling

better if

they're focusing on someone else's flaws.

I'm not sure where you live, but I've thought for a long time that this was a

Northern issue.

I live in Michigan and lived in Georgia for a few years and have to say that I

didn't deal with

many comments at all down South. It seems like up here people know no

boundaries on

what is and isn't acceptable to ask a complete stranger.

Hang in there! :-)

~

[Guest guest]

Folks,

At age 58 and having CMT with noticeable symptoms for most of my life, I

have encountered every imaginable reaction and question. Now I am

recovering from ankle fusion surgery and have been in a wheel chair for the

last 6 weeks. I got a walking cast and started walking with a walker this

past week. With this complication, I have encountered yet another batch of

unpredictable responses. One thing that almost all the reactions, comments,

nosy questions, etc. appear to have in common is--they seem to mean well. I

have rarely felt insulted or bothered by curiosity and interest. I have been

astounded and humbled by just how helpful people are. I have had

acquaintances (coworkers, etc.) for years who have never asked, which I find

to be much more troublesome. I am much more bothered by the restaurant

hostess who looks annoyed because I ask for an accessible table instead of

the one she stuck me with in the corner or the coworker who thinks I am

" milking the system " because I took sick leave to have surgery. Such people

are not worth even responding to--I simply shake my head in disbelief and

move on to my many, many friends--the good people who occupy the planet.

Tom

[Guest guest]

Right on Tom!

I have not felt slighted when people ask me personal questions relating to

my health. In fact I encourage them to ask questions. I like taking on the

PR Manager role for CMT Awareness.

Most people have never heard of Charcot-Marie-Tooth so I enjoy educating

them. I never heard of CMT either. There are so many charities and good

causes today trying to increase their awareness and ask for financial

support.

NOBODY has ever asked me for a donation to support CMT. I would like to see

this change. I welcome the opportunity to discuss my disease and increase

public awareness. Maybe I have been in Sales & Marketing too long? lol. I

have pretty tough skin.

It may sound kinda funny, but for some reason I feel the need to be a good

will ambassador for CMT. Spread the word.

Kindest regards,

[Guest guest]

I agree with Tom Bate's reply. I'm 65 and just recently retired. I've had

noticable limitations for the last 30 years. I usually take it as an

opportunity to educate people about CMT. Most people are well meaning and are

curious. I often also take the initiative and talk about it first, especially in

a new work environment. Look at it as an opportunity and don't get upset.

Jerry Metcalfe

[Guest guest]

When I was pregnant with my last baby I was asked if I used street drugs by a

new PA at my OBGYNs office. That was after she looked at my legs. I was so upset

I cried. I was so pregnant and moody I took offense at everything.