Before I got into the trading game, I hung out at a now-defunct humor site on AOL with a buncha loonies. One of the funniest & brightest was a friend who I came to learn was dealing with some pretty traumatic stuff.
In her behalf, I thought I'd share something she sent today. Perhaps those of you who did okay this year will consider a donation to the organization she describes here....
_____________________
What follows is the year's Holiday (Horrorday? Hollyday?) update included
with my Christmas cards that may be mailed in time for next year! Or not.
Each of you has inquired as to my well being so I wanted to treat you to the
situation as it stands now. Tomorrow is a whole nother story.... "Read it and
weep" is a rather funny, true phrase methinks. I chose not to BCC this ~ you
may wanna start a pool. That'll make sense towards the end. <snork>
Feel free to share this among those who ask you (not me) about me. I may have
missed someone inadvertantly, too. I'm open to entertain any questions you
may have no matter how invasive you may think they are. I mean that
sincerely. Without further ado....
Dear Friends and Family,
It's been four years since my last update; seems like a lifetime ago. To say
moving from CA to NJ has been a challenge is a gross understatement. ALS has
radically altered the lives of all of us. It's a cruel, unforgiving disease
that pulls all involved further and further down the uncontrollable spiral of
dispair, devastation and emotional wreckage. Another ALS patient was quoted
as saying "It's like having a ringside seat to your own demise." No kidding.
This is not the illness to get, let me tell ya!
I stopped walking in ‘97, using my keyboard in ‘98, my hands/arms are
basically useless, my speech 90% gone. There's no way to describe the
frustration of trying to be understood. I'm still breathing on my own and,
with difficulty, eating everything; my tongue has lost most dexterity and
strength. I get pain at night from the sciatic nerve and is very
uncomfortable from butt to toes. Literally, you could say it's a real pain in
the ass!
I have home health care four mornings a week for the two hours it takes to
exercise, shower, dress and eat. Home care agencies leave much to be desired.
My computer is my lifeline. I use an on-screen keyboard program with an
adaptive mouse; a camera device that sits on the monitor activated by a small
dot on my glasses. Head movement controls the pointer. A program created for
carpel tunnel does all right/double clicks, drag and scroll. I run another
similar program simultaneously that expands my capability. Damn, I'm good!!
This setup allows me to do everything including having conversations with
visitors.
I’ve made rewarding friendships online, reconnected with old friends through
alumni websites and bought a van. Sebastian kitty is the love and joy of my
life. He delights in riding on a wheelchair arm and sleeping on top of me. He
is a real talker, too!
I've made it past the typical two-to-five-year window living with ALS. I'm
downright tired of the whole mess and look forward to moving on. I’m at peace
with God and have no fear of dying.....the sooner the better. The flu vaccine
is scarcer than hen's teeth; the biggest threat is pneumonia from the flu;
that would be a nasty way to exit. We’ll see....
In closing, I wish you health and happiness. Please make the most of what you
have, take nothing for granted and consider a donation to the National ALS
Association.
Love, |
