Open Letter to the List Family, Katie, Hans & Bonnie,
U of T & John & Barb:
Right now my head is full of things to discuss for I've spent a number of
days thinking about all of us, where we do or don't stand, what might happen
to us and what our responsibilities are to the List and to each other and to
any organization that sponsors us. Let's hope I can make some sense of all
this at least for myself & hopefully for everyone else!
Sending the St. Paddy's Day card was certainly not the first time I'd
broken the guidelines. However, it was the first time Katie's words flew
into my head--right after I hit SEND! That got me to thinking about
SPARKLE, the other half of what I call the PIEN sandwich.
Let's face it. PIEN is the heavyweight. It is the research center, the
discussion and debate center. It has become the 24 hour home to enter when
the pain is unbearable, when sleep alludes us and when loneliness and fear
overtake us. It has become a place of sanctuary for we know whoever is on
line understands us and extends a hand.
Not too far away is SPARKLE which represents the fun side of PIEN, the
banter, the jokes, the puzzles, the laughter-that attempt to take from our
shoulders the weight and fear of the shadow within-even for an instant. In
retrospect I believe that's the only place my card should have been sent..
I went back to Katie's post and read it again. I had just written to my
neuro about John's & Barb's post to us. I love our list family. I wrote of
our intellectual abilities, the promise we offer one another of camaraderie
and caring. The research we discuss, the individual problems we attempt to
solve. How much we offer for research, and how much can be learned from our
knowledge and experience.. I mentioned the distinction of having
Kathrynne, Jorge and Bob to advise us. I lauded our professionalism, and
how much we offered a medical school. I touted us as a class act---and I
was wrong.
We have the attributes, but we aren't going to fit the criteria. To have all
those wonderful attributes, we have to be willing to compromise. In a time
of plenty, we were given a very special gift. I think we may have taken it
for granted. Again, I agree with Katie. Whether we remain with the UofT
or are accepted elsewhere, we have to economize. In other words, we have
to, in financial terms, become an asset not a liability!
Having said this, I went into my PIEN folder and found a welcome letter and
the Guidelines. In the welcoming letter, Barbara notes, ".....the list has
become 'a means of feeling connected to others...a way of feeling we're not
alone...of making the road of living with PD{I would certainly feel better
if the rest of us were included here] easier to bear." She notes how easy
it is to misinterpret what one says and how we need to remain patient and to
respect one another. I have to admit that in the letter, Barb indicates
jokes are ok though I now personally believe they belong to SPARKLE unless
they illustrate a point.
From the Guidelines:
Rumor and creative expression are appreciated. Other forums are available
which better specialize in these kinds of postings. I may have missed it or
misinterpreted it, but I see nothing specific in the Guidelines about jokes.
A clarification may be in order here as well as examples for
"creative expression".
Knowing me as you do, you know how I value humor. We cannot make the days
without it. So I ask everyone: Is it then possible that except in
instances where humor pertains to a specific topic being discussed that we
give unto SPARKLE what is SPARKLE'S and give unto PIEN what is PIEN'S to the
best of our abilities? Are we capable of sacrificing a personal desire from
the account sheet for the budget of the whole?
Finally, I ask that we place ourselves as business CEO's responsible for
profit though willing to do community service. Under what conditions
would you accept us?
In caring, in friendship, and in the survival of PIEN,
E of the headdress
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