All spirituality lost

["Tebay, Wendy M" <wendy.m.tebay@xxxxxxxx>]

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In response to your posting:

********

Dear Barbara:

    I have, from time to time, received various replies to my little
vignettes which I have posted on the Listserv.  (These have been most
welcomed!)  But there is a story I would like to tell, which I am not sure
will be appreciated or even understood by most people.  It concerns a slap
in the face of reality which I experienced recently and does not make me
proud of myself.  I thought I would ask you to read it first to see whether
or not it is suitable material for the Listserv.
This forum is immensely valuable to all the people who use it.  I am
extremely grateful for the privilige of being among its members, and I don't
want to do or  say anything that will hurt anyone.

(etc., etc.,)....

*************

Speaking for myself, I was not offended at all.  In fact, I found it
brutally honest, and also very touching.  I can relate, as I'm sure most of
us can, if we're honest with ourselves.  I still haven't gotten a
handicapped parking sticker, or used any other public handicap facilities,
altho' there have been times when it would have been to my advantage.  I
once went into this local store where I often shopped, and as I walked in, I
heard someone really giving this woman, who was then checking out, a hard
time about having parked in the handicapped space.  They were saying
something about the fact that she didn't look handicapped and shouldn't be
using it.  The woman replied that she had a neurological condition and
didn't always have problems maneuvering, but sometimes she did.  Everyone at
that point really didn't seem to know what to do or say.  It's funny in the
sense, that in the past, I've wanted to give some people a hard time for
illegally parking in a handicapped spot and can relate to that person's
anger over it.  But, on the other hand, I can definitely also relate to the
woman who was being attacked for having done it.  All of us have to deal
with a disease that comes and goes, and it's sometimes difficult to tell
when that point has arrived at which we really need to or should begin
shedding a little of our pride and make use of some of these aids.

After one of the PD Unity Walks in NYC, I was tired and my meds were wearing
off a bit, so I was moving slow.  I don't remember the exact scene, but me
and my two friends were trying to catch a cab or subway or something, and
someone else had either made some comment about how long things were taking,
or the driver was getting impatient, or whatever, and one of my friends
blurted out something to the effect to let up/ back off or whatever, cuz her
friend (me) was handicapped.  It was weird to have that label actually given
to me out loud.  I've also before had people come up to me at times when I
thought my meds were working pretty well and that I looked/moved "normally",
and ask me things like, "Are you all right?"  It's hard to know what to say.
It's kinda disconcerting to think that when you believe you're at your best,
other people think something's strange with you..  Once, when a friend and I
were country dancing, we had met this guy, whom we both danced with a few
times throughout the night.  A couple times he commented/questioned my
stiffness, and I kinda brushed it off.  When we were leaving tho', he was
also, and so he walked out with us.  As he did, he made a comment about my
lack of rhythm.  At that point, I couldn't stand it any longer.  Even tho'
in a sense I felt like since I hardly knew him and would likely never see
him again, I thus didn't owe him a detailed explanation, I also couldn't
stand the thought of him thinking I lacked inherent rhythm, so I told him.
Well, did he ever feel guilty, obviously.

It's definitely tough coming to terms with our new definition of ourselves
and how others see us, and our re-categorization as 'handicapped.'  I think
that altho' you find some of your feelings and thoughts on your newfound
'status' disturbing, I think they are healthy, due to their honesty, and the
fact that you are up front about them.  Too many people don't go that deep
into their true feelings.

Well, good luck with the lifetime of adjustment.  Just treat it as one of
life's many lessons.  Maybe by the fact of your own honesty about your
feelings, the people around you will also learn to do the same, if they
haven't already.

Wendy Tebay

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Date:         Mon, 29 Jun 1998 18:43:42 EDT
Reply-To:     Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sender:       Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
From:         "Robert M. Johnson" <johnson@xxxxxxxxxxxxxxxxx>
Subject:      Re: New with Questions

Wow, Kathy!

It sure sounds like your hands are full at the moment. The symptoms and
circumstances about which you've asked are a cause for concern. Parkinson's is
frequently missed in its early stages by even highly qualified neurologists. If
you choose to discuss your situation with a neurologist, try to find one that
is a movement disorder specialist. It may be helpful to check out "Demystifying
the Neurological Examination for Parkinson's" on John Cuttingham's *Parkinsn's
Archive Treasure Page* located at

                

I certainly hope you do not have PD. Things sound tough enough as they are.

bob johnson   52/(3 weeks)              johnson@xxxxxxxxxxxxxxxxx