I know I am very much an outsider to this vent users group (it's my mother
who is on a vent, not me, not a child, not someone in the prime of life), I
feel I must comment on the recent posts of Andrea and the replies to her
original post.
Andrea, I too, heard your anger and bitterness towards the tragedy that
happened to your daughter and your family. My heart went out to you, knowing
that your dealings with your daughter have only just begun, and right now
you're probably wondering how you're going to do all you have to do to make
the best life possible for your daughter.
What I heard in the responses from the others on this list was not
chastisement or criticism. Instead, I heard a lot of caring and reaching out
to you from people who had been either where you are now, or where your
daughter is. I heard straightforward advice from people who knew first hand
what helped them and what did not help them; I heard them desperately
pleading with you not to do some things which, probably, they had
encountered, that had hurt them. I heard some pain at your perception of
someone on a vent as "half human, half machine"; I know you didn't mean to do
this, but your words probably stung quite a bit.
If you go back and re-read these responses, maybe you will hear the main
message they were sending you: THAT THEIR QUALITY OF LIFE IS GOOD, AND YOUR
DAUGHTER'S WILL BE, TOO; THAT THEY, TOO, FELT WHAT YOU ARE FEELING NOW,
SOMETIMES PROBABLY STILL FEEL IT, BUT THEY HAVE WORKED THROUGH THESE
FEELINGS, EVEN TO THE EXTENT THAT AFTER DAILY STRUGGLES RELATED TO THEIR VENT
AND/OR PARALYSIS, THEY HAVE ENOUGH ENERGY LEFT OVER TO REACH OUT TO OTHERS.
I know many people who are so caught up in what are trivial struggles of
life compared to what some people are faced with, who never grow to be
capable of giving to others in this way.
Andrea, I think that what you see as a pollyanna view of life that the vent
users on this list have, is real. I know, too, that there must be days when
SCI persons don't see life this way. But what they probably have, that you
don't, is a support system which helps get them through these days. It is a
struggle for caregivers to do anything which meets their own needs, when the
needs of those they are caring for are great. I, myself, have vowed to start
counseling to help me with the gamut of feelings I have about my mother's
situation, but just haven't found the time to start, and your
responsibilities to your family right now are much larger than mine. But
this is one way we can get the support we need.
My thoughts and prayers are with you and your family.
Chris Gawlak
Ft. Pierce, Fl.