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| Author |
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mwarner
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Welcome. Who are we?
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Jan 8 01:26 UTC 1995 |
"The kindest thing anyone could have done for me, once I'd finished five
weeks' radiation, would have been to look me square in the eye and say
this clearly, "Reynolds Price is dead. Who will you be now? Who can you
be now and how can you get there, double-time?" Cruel and unusable as it
might have sounded in the wake of trauma, I think its truth would have
snagged deep in me and won my attention eventually, far sooner than I
managed to find it myself. Yet to this day, with all the kindnesses done
for me, no one has so much as hinted that news in my direction; and I've
yet to meet another dazed person who's heard it when it was needed most
- Come back to life, whoever you'll be. Only you can do it.
How you'll manage that huge transformation is your problem though and
nobody else's. Are there known techniques for surviving a literal hairpin
turn in the midst of a life span - or early or late - without forgetting
the better parts of who you were? What are the thoughts and acts
required to turn your dead self inside-out into something new and durably
practical that, however strange, is the creature demanded by whatever hard
facts confront you now? So far as I've heard, nobody else knows - or
knows in a way they can transfer to others. If they know, I haven't
thei{ method. I'll go on sketching my own course then.
--Reynold's Price
A Whole New Life, An Illness And A Healing -- 1994
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| 59 responses total. |
raywms
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response 1 of 59:
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Jan 8 17:39 UTC 1995 |
Thanks mwarner! Am I really the first to respond on this conf? Peacefrg
will FLIP! Actually, seriously, I want to thank you for the above message.
It is something we need to share, preparing ourselves for a friend or family
member who can at any moment encounter a traumatic event which will
neccessitate reshaping his/her lifestyle due to a disability. Thanks for this
conf.
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mwarner
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response 2 of 59:
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Jan 8 18:09 UTC 1995 |
Thanks for the thanks, but I think a good number of people would have been
willing to start this conference. You were first to respond!
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mcmud
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response 3 of 59:
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Jan 9 05:14 UTC 1995 |
Me three.
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bigguy
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response 4 of 59:
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Jan 12 13:38 UTC 1995 |
I have Muscular Dystrophy and i think that this is the best thing i've found
yet on the INET.
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mwarner
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response 5 of 59:
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Jan 12 20:34 UTC 1995 |
This is a new conference. What is needed really is just more people
reading it and adding their discussions. Feel free to add any items you
wish. By the way, (if you are new to grex and don't already know this)
the staff of grex is VERY VERY helpful if you have any technical questions
on how best to use this system. Ask in "agora" or "info" and good answers
generally pop up, or you can e-mail the staff.
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raywms
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response 6 of 59:
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Jan 15 07:20 UTC 1995 |
Hey mcmud and bigguy! That makes three of us plus the staff! WE ARE GROWING!
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simcha
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response 7 of 59:
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Jan 23 17:35 UTC 1995 |
I'm here too.
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md
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response 8 of 59:
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Jan 25 16:22 UTC 1995 |
Re #0:
People's personalities change after a disabling sickness or injury.
Conditions that cause severe chronic pain, for example, often make
people uncommunicative and short-tempered. You can see the pain in
their faces, and in the way they carry themselves. Also, something
that changes disabled people is loss of identity. Many (most?) people
tend to think of themselves in terms of what they do. Ask, "Who are
you?" and you'll get "I'm a teacher," "a full-time parent," "an auto
worker," "a musician," or whatever. But after fate has taken away
your ability to do what you do, who are you then? For most people
this is an unanswerable question, based on a literally unimaginable
scenario. No one is ever prepared for it when it happens, and it may
take nondisabled friends and family a while to understand.
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raywms
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response 9 of 59:
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Jan 26 22:04 UTC 1995 |
MD, your message was wonderful and straight! The traumatic experience of an
injury is emotional as well as physical to the Individual; emotional and
lifestyle changes for family members who surrender personal time/interests to
stay at home with the Individual who suffered the injury . Let's keep up this
wonderful dialogue!
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mcmud
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response 10 of 59:
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Jan 28 05:12 UTC 1995 |
Roger that on the uncommunaicativ
e and short-tempered, MD. For me, some kind of exercise usually
helps blow off steam.
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simcha
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response 11 of 59:
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Feb 2 17:52 UTC 1995 |
My FIL has arthritis and back problmes that are sometimes cripplingly
painful. He used to think he had to "keep it all inside" and he we
would be jus as MD described...uncommunicative and short tempered.
Over the years, he has learned that when he is with us, he can say
even to the children, "I'm in a lot of pain and just want to be alone"
believe it or not, he relaxesmore and is less grumpy. He is still
in pain, and we respect that small talk or houshold noise might be
an irritant to him, but he is no longer trying to suffer stoically.
He is comfortable ggoing to his room instead of trying to pretend to
be okay. That
lilittle bit of openness has mad for a much better relationship.
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mwarner
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response 12 of 59:
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Feb 15 07:35 UTC 1995 |
So far this conference has 10 participants. I'd like to say thanks to all
the people who have taken the time to read and write the various items
here and also to say welcome. One of the reasons this conference was
started here is because picospan is such an open, easy to use conferencing
system and because grex is relatively easy to get to and make use of. If
you know anyone that might have ideas to share here or an interest in the
discussions please help them find their way here.
Also, if you see (or start) related discussions in other conferences on
grex (particularly outside of Agoro, which most people probably read) let
me know and I can "link" the items to this conference. For example, I
started an item in aaypsi to discuss access and then linked it here
because it was of particular interest in this conference as well. I can
see many items in cf's like travel, cooking, music, etc. etc. etc. working
the same way.
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raywms
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response 13 of 59:
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Feb 18 17:58 UTC 1995 |
what problems are encountered and what solutions were used...ADA Americans
with a Disabilities Act problems/updates/discussions/advise. MANY THINGS. and
Thanks for your continued interest and support.
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alx
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response 14 of 59:
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Feb 20 01:29 UTC 1995 |
In our family, both my wife Megan and I suffer from chronic pain.
Mine's from on-the-job injuries, hers from a mix of congenital problems
and the mistakes of medical science.
I still go to work each day, but it gets harder each time I have to
lever myself out of bed. Megan's identity has basically been wiped
out several times by medical setbacks. Currently, she's having
extreme difficulty with another setback. I'm trying to teach her
how to navigate around on the Net, because she's housebound much of
the time, and it's a way for her to communicate with other people.
I'll be back from time to time; it's hard to get on from MichNet.
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popcorn
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response 15 of 59:
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Feb 20 02:57 UTC 1995 |
This response has been erased.
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sorcha
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response 16 of 59:
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Feb 23 09:51 UTC 1995 |
Hello! I think you have just gotten a new addition to this conferance. I am a
very new user to this place and I will try to come on alot more to learn how to
use it. I am totally blind do to a lack of developed optic nerves in uturo. I
have
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sorcha
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response 17 of 59:
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Feb 23 10:04 UTC 1995 |
Sorry to post again but like I said I'm new here.
I have a guide dog named Carol who I received in
1992 from Guiding Eyes for the Blind Inc.
I use a Eureka A.4 talking computer to get
around the internet. Well that's about it for now and again my
appologies for the double post. I think I'm
figuring things out now. Take care all.
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suzi
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response 18 of 59:
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Feb 23 15:19 UTC 1995 |
Welcome to Grex, Tara. A talking computer - that is truly amazing!
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mwarner
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response 19 of 59:
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Feb 23 17:23 UTC 1995 |
I've been thinking about starting an item in the "info" conference and
linking it here that would be along the lines of "how to make grex easier
to use and understand" because I am beginning to see that people have a
very wide and sometimes unexpected variety of neat ways to get here that
might require some special info or maybe even small changes in the way
grex is presented. I'll enter it fairly soon.
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simcha
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response 20 of 59:
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Feb 24 19:23 UTC 1995 |
Hi Tara and welcome!
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htp169
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response 21 of 59:
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Feb 25 22:56 UTC 1995 |
Very interesting conference. I'm brand new and just started a few days
ago. In fact i"m #133 on BBC, I have had heart trouble since 1980 and
things got so bad I had a heart transplant at the U OF M. Sure gave me
anew outlook on life. Every day is a good day and I havn't met a person
I don't like. I'm a whole lot more tolerant of everything and I didn't
know I had so many friends. You folks can count on me for whatever.
thanks again.
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raywms
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response 22 of 59:
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Mar 4 23:28 UTC 1995 |
Glad Sorcha told us of her talking computer with Eruka (spell)? There is
also a program called JAWS which is great with our DECtalk synthesiser. We
have one lady who is blind and comes into the office to use this program.
It helps her with studying for her GED...and she is near forty, fifteen
years in the world of blindness. We are proud of her determination to
continue her education.
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bruin
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response 23 of 59:
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Apr 17 01:18 UTC 1995 |
I have been becoming more aware of accomodating differently abled people for
many years, and since I started dating a developmentally disabled woman some
five years ago, my awareness to their needs and concerns have really hit home
with me. At first I thought that being in love with a DD would alienate
family and friends, but instead, just the opposite happened.
Maybe ten or twenty years ago such relationships would have been taboo.
However, differently abled people have always been able to express intimacy,
love, and even sex, and now that such relationships are coming out, I feel
that many of these people will get needs met that couldn't have been done
before.
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raywms
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response 24 of 59:
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Apr 20 23:28 UTC 1995 |
Well said Bruin. Finally others will realize that some things do happen or
people will find a way to do certain things when there is a (leer) "drive"
or desire. For myself, years ago, I worked with a hearing lady (Iam deaf)
for a couple of years. One Saturday when my son was visiting (I am divorced)
he and I went to the grocery store. We met this lady I work with and when I
introduced my son, her mouth dropped....she gapped, stammered..."But....Ray
...how do deaf...I mean...how can..." and I told her "You do not do those
things (make baby) with your ears." I have had the pleasure of repeating
this story many times. I still laugh at the ignorance--not the individual--
when this happens. Could we have other persons experiences on this board?
Happy readings!!
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