After reading Andrea Skinners post and the ones to follow, I just had to get
a few things out. First of all, I'm a 35-yr old female w/Muscular Dystrophy.
I went into respiratory failure on October 1, 1994. I was a full-time
employee for a govt. agency at the time. Three years later find me feeling
better than I have in a very, very long time. I am still working for that
same govt. agency and attending college in the evening. The vent is just
another piece of hardware to me. My nurses even forget to put attach the
vent back on me after transferring me to the commode because they don't see
me as "a machine."
So, to Andrea I say the following:
1. As far as your daughter's life being ruined now, I say IT BEATS THE
ALTERNATIVE ! Or do you not agree with that? If not, why didn't you pull
the plug?
2. You say you will never ACCEPT it, but that you've LEARNED TO LIVE WITH
IT. I ask you, what's the difference ????? We have all learned to live with
our various problems of life--that's what ACCEPTANCE is.
3. What is NORMAL, anyway. As far as I'm concerned, it's a setting on a
hair dryer!
4. It's NEVER easy to deal with a child's disability, regardless if your
child is 4 or 40. I still see the pain in my parent's eyes and I worry about
them. Would I like to be cured, HELL YES. Do I have "pity parties,"? YOU
BET I DO. Do they RUIN my life? NO WAY. I figure I can deal with it or
PULL THE PLUG FOR MYSELF.
5. Regardless of the cause of why we're vent-dependent, power
chair-dependent, the pain is the same. What I mean by that is your daughter
is not entitled to any more sympathy, empathy, or pity than any of the other
people who have survived an accident and are living on life support.
6. This bulletin board is for help and support and if you feel better now
because you have had the chance to (pardon the pun) VENT your bitterness,
then it will have been all worth it in the end. If not, I hope and pray you
can find the help and support you need.
Karen in California