Re: inside/outside CMT

[Guest guest]

In a message dated 2/1/2006 7:44:47 P.M. Central Standard Time,

GfijiG6@... writes:

One question, Barb. Can you elaborate on what you mean by CMT affecting

you on the inside, not the outside? This is exactly how I feel and I

am just curious to hear more about what you mean, after all, we are

both 53 and people tell both of us how good we look.

~ Gretchen

I've written two responses and deleted them both.They made sense to me but I

wasn't sure they would make sense to you. So, I'm still working on it.

Barb

[Guest guest]

This wasn't directed towards me but I'll take a stab at explaining what that

statement means to me.

------------------------------

I don't look disabled but I feel it. Mine is truly a hidden disability. I can

walk. I can even run for short distances. Skipping is a bit more difficult

but, once you've passed childhood, who really skips that much anyway?

I can stand in front of a room full of co-workers and deliver a full-day

workshop. I can travel all over the country and the world to give meetings and

consult with employees. I can type lengthy documents.

What people cannot " see " is that while I can walk, I use AFOs which are hidden

from view under my pants. I can run and play with my daughter but, when I go

home,I must go to bed due to the fatigue and pain. I can only walk about half

the mall to do Christmas shopping

and then I have to wait for my daughter and husband to return to me while I

worry about how I'm going to get from the middle of the mall back to the car.

After I complete a full-day at the office, I go home and crash, sometimes for

days, in order to let my body recuperate. While my co-workers see what I " can "

do, my family and I must suffer the consequences that my outward guise of

" ability " has cost us.

My company accommodated my disability by allowing me to work from home in a

virtual office setting. Surely, they believed, by doing my job from home, any

problems that I may have experienced will be better now. They think, " She

shouldn't have any more absences from

work. " My co-workers think that I've got it made.

My supervisors wonder why I have to miss meetings even when I just have to

telephone in. They complain that I miss deadlines. They secretly wonder if I'm

running errands, doing childcare, or just goofing off instead of working.

What they don't " see " is the number of hours that I actually spend trying to

accomplish the job. I don't leave the house. My daughter goes to after school

care. My work day consists of meetings, typing, pain,and sleep. My husband

does most of the child-rearing activities so I can try to meet work deadlines.

My life is work.

A colleague of mine never understood my disability until I asked him to unscrew

the pin connectors on my laptop to which the overhead projector was attached. I

had attached the connector myself so it wasn't really very tight to begin with.

The task was quite easy for

him but my fingers couldn't manage it. It surprised him that such a small task

was difficult for me.

When a friend asked me how far I can walk, I replied, " I can walk 10 miles if I

want to but my body will pay for the effort. "

My daughter's piano teacher keeps trying to get me to play in the local symphony

orchestra. I used to be quite a violinist in the day. I've told her that my

fingers just won't move well enough to play anymore. She counters with " well, we

all have trouble and you

should just try. " She means well really but she oesn't understand what the

effort would cost me and my family.

[Guest guest]

As an active volunteer of 9 years, with 16 grandchildren, and a husband with

Parkinson's, I can certainly empathize with 's problems. So much of

our disability is hidden, but it truly is a disability.

Blessings to all, and to the researchers.

P.