Living with CMT

[Guest guest]

In a message dated 7/18/00 1:56:57 PM, a CMTer friend wrote:

<< Anyway, one minute I was walking, and the next second, I was on my hands

and knees, looking at the pattern of the tiles. Well, A guy came over

immediately and asked if I was alright, (Yea, right) I asked if he could just

help me get upright, I would take it from there, and he hesitated, but helped

in the end. I shook all over, not only from the pain, but the embarassment.

His hesitation hurt too. >>

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Your good Samaritan may indeed have had a bad back, as suggested.

Or he may have had some other unseen physical problem, such as weak heart.

He may have worried about being strong enough to really help.

He may have feared that if he picked you up incorrectly he could injure you.

(In retirement homes NO ONE is allowed to pick up a resident who has fallen.

The 911 - EMT fellas MUST be called. They are trained to check for injuries

before moving a fallen person. They also know how to pick up a person

safely.) In retirement homes people are independent, not like in nursing

homes where they are even more strict.

It's very hard for another person to know how to help another person. Jeanie

appreciated that she was allowed to play ball because someone else would run

for her. resented having someone run for her. Teachers often can't win

either. I'm sure that too often when a person tries to help, and is rebuffed,

he or she is not likely to risk that again.

Fred Krepps' choice of the word inconvenient may not have been the best word,

but some of the rest of his message was right on. The more I read people's

various stories the more I understand how difficult it is for someone else to

know what to do or how to be helpful without upsetting someone. It's often a

no-win situation for others. Whatever they try to do is seen as too much, too

little, too often, not often enough, and so forth. No-win. So many people

give up trying, regardless of how much they may care about a CMTer. I suppose

that idea will put some of you on the defensive, and make you angry at me,

and I'm sorry, but it's true.

Many of the people who are living with us may be living on the edge, trying

to find the balance between enough and too much, and they are in emotional

pain because they can't make our problems go away. Fred asked us to see life

from their point of view, too. Life isn't just about us, even when we are in

terrible pain and having great difficulties. Other people have their own

problems, whether or not we can see them. And Fred is NOT mildly or

moderately affected by his CMT. He's had to learn to adapt as much as most if

not all of you have.

Now, take a deep breath and please know I am not being critical or anything

else negative. I'm trying to help people see the bigger picture.

Warm regards (especially for those of you who have frozen feet!)

Kat