> Although I can relate to many things you have stated, one thing in
particular
> stuck out, the "fix it quick" syndrome. Due to the fact that I have
epilepsy
> and have had it all my life as you already know, I have come to realize
this.
>
> My family acted with the "fix it quick" theory and still does. I personally
> believe they do that because it, being the epilepsy, is something they
> cannot
> stop and want to, and it is the only way they know how to help me.
> Unfortunatly it is not what we need is a "fix it quick" but perhaps an ear,
> or
> some understanding, or maybe even some encouragement and a hug. That
> syndrome
> tended to make me feel isolated, misunderstood, and sometimes like I was a
> freak.
> I wholeheartedly agree with you about talking to everyone that is affected
> by
> your TM. But try not to be disappointed by those who cannot understand. My
> family is still caught up in fix it or deny it so I just talk with my
> children
> and a couple very good friends and ALL of you! For that I am blessed.
I think many, many people just don't know how to handle long-term illnesses or
medical problems of loved ones. I remember thinking, after being diagnosed
with TM and having such an indefinite prognosis, that in this day of advanced
technology we're so
used to being able to just walk in a doctor's office and get a prescription
or surgery date and have everything fixed and back to normal. And I was just
so astounded to learn I had an illness that couldn't be "fixed" like that.
But, really, after thinking about it, there are many, many illnesses like
that. I have two friends who for months had medical problems no one could find
an answer for -- two very different situations, symptoms, etc., yet both
experienced the same reaction from people when no immediate causes were
forthcoming: "Are you sure you are not just imagining all this?" That only
discourages further!! Both did find out what the problems were and both were
able to have surgery to correct the situation, and I imagine, probably felt
very justified and relieved!!
But we're talking about a different scenario here. For ages my mom had a
plaque in the kitchen which said something like, "Mom Department: Cookies
baked, Hurts kissed, Problems solved while you wait." :-) I think parents
want to solve their kid's problems and sometimes just don't know what to do
when they can't. So they either smooth it over and try to make it all better,
not realizing they are in a form of denial and not really solving anything, or
go the opposite direction, like my mother-in-law, who, out of love, worries
and would send me all over the country if she could seeking specialists and
help. It IS hard to realize as a parent that you can't solve or fix
everything your kids come up against, that you have to leave them in God's
hands -- but not so hard, after all, when you realize how very capable His
are. I think the best thing is just to realize they are only human, they mean
well, and to keep them informed -- keep the lines of communication open. Let
them know how they can best help you cope: "Mom, there really isn't an answer
or a way to 'solve' this, but I just need to talk about it sometimes." Of
course, as Maria said, some just cannot cope with it or hear about it, and all
we can do then is talk to those close friends we can really open up to. Like
you all! But I think we have to be careful not to only open up to our list
friends and not try to communicate with the people we live with every day, not
to withdraw from them, thinking, "They just don't understand." Try to help
them understand, if at all possible.
Barbara H.