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> From: Maureen Wroblewski <wroblews(AT)frontiernet.net>
> To: JHarper33(AT)aol.com
> Cc: Silvercaul(AT)aol.com tmic-list(AT)eskimo.com
> Subject: Re: family support
> Date: Saturday, November 14, 1998 6:49 PM
>
> Hi "guys":
> Just reading through all your posts tonight I find myself so very
> jealous of all of you who have just been diagnosed with TM and have
> found this listening, responding, real-live source already! And angry
> sometimes too, because of all the years I 'crawled' through one day at a
> time for nearly thirty years before all of THIS was even possible. I
> remember coming home from the hospital after three months away from
> parents and four brothers and sisters and I could just crawl around on
> the floor after complete paralysis from the waist down, and I never even
> heard of a support group! There was no offer of support. True, I was
> only fifteen at the time and it was different then. I was dependent upon
> my parents and what they knew. I suppose they assumed that if I didn't
> ask for help, I didn't need any. We didn't talk very much about it and
> when I did break down they just wanted to "fix" it quick. No one
> guessed the half of it. I guess I just wanted to tell you all how
> blessed you are to have each other now, before some of the hidden damage
> that FOLLOWS TM begins to develop. Talk to everyone that is affected by
> your TM and tell them what's going on in you if they are willing. I'm
> not sure how I would have reacted to this way back then, but today I am
> convinced that I would have wanted them to try.
> I gain so much by listening in to all of your thoughts, but sometimes I
> just want to scream that it's too late. I've come to know all of you
> too late. Still I realize I can't go back and do it over so here I am.
> >>
Dear Maureen,
Although we have corresponded on a few occasions I just never knew! I am so
sorry for not knowing or lending an ear to you!
The fact that you have just vented you deep feelings must have taken a monkey
off of your shoulders. Or at least started some sort of healing for you.
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.
Maureen, we are here for you anytime day or night for anything large, small
and in between. No holds barred! You are a vital part of our group!
Still haven't made it to Rochester due to this disk, but when I do, we will
meet up okay?
Hugs,
Maria in Tonawanda