Dear listfolks,
It is Tuesday morning in snowy Maine. My friend David has just left to
go to the Union Mutual Co. bakery where he works, having stopped to help
me with my medications and so forth. So, here I go with another
Parkinsonian true-life adventure story.
For days and days, I had been phoning my US Representative. His name is
Tom Allen. I had been wanting to get my letter to President Clinton, the
one I posted to the List, to Rep. Allen, hoping to convince him to send
it on to the President. A few of you e-mailed me about it- a plea to
FUND THE UDALL BILL. It mentions the 77 hours per week of personal care
I receive from the State, even at 4:00 in the morning. Perhaps you
remember it.
Yesterday morning was another unpredictable and fast-changing Monday, and
I was busy as always on the young-onset persons' roller coaster ride.
The social worker from the nursing agency phoned to say that she could
come to the house for a much-needed visit at 3:00. Her name is Joan. She
said,
"Can you fit me into your medication cycle?"
Meanwhile, the piano tuner never made it to my house. His name is Glen
way. I like him, and since he was traveling all the way from Cape Cod, I
wondered if another nor'easter had swallowed him up in a giant snowdrift.
By late morning (10:40 AM, I had made my fifth phone call since Friday to
Tom Allen. Diana, his wife, happens to know me, because they attend the
church in town where I used to run a small office, one room in fact,
upstairs adjacent to Reverend Hanneman's study, for a non-profit project
that aided the flood of African refugees that have been brought to Maine.
Diana had told me on Sunday at suppertime that she thought that Tom would
set some time up for me to make a presentation about the letter to the
President.
On instinct, I decided, no promise yet given, that it was time to r-u-s-h
to Representative Allen's office, on the downslope of the business
district, in an old part of town (Oxford Street). Amy, my wonderful new
morning personal care attendant, whose sister Sue had preceded her in the
attendant job before having a beautiful baby girl, noticed me trying to
get my printer going, and suddenly said to me,
"I'll start the car!"
With one brand-new and slightly re-edited version of the letter to
President Clinton freshly printed, I made out an envelope addressed to
President Clinton, put the letter inside and sealed the flap. Now
we went through the list of things this Parkinsonian needs, when
venturing out in Maine's winter cold.
Jay helped me to pack. Even though it was a nice sunny day, the wind made
it feel like I was walking out into a gigantic freezer. I can feel the
cold, just thinking about yesterday---BRRRRRRR!
I had meanwhile heard earlier yesterday from Greg Leeman,by phone,
concerning Claudia Goldberg's copy of the now-famous videotape of my 29
minutes on WCSH-TV, the local NBC affiliate. Maryhelen Davila had
e-mailed me, a little worried about when her videotape would arrive, and
whether her check had reached me. Presidents' Day meant no postal
deliveries, so watched-for videos had been slightly delayed en route.
My dad, down in Florida, and my Aunt Myrna in Rhode Island, who had
patiently learned how to phone U.S. Senator Reed and U.S. Representative
Kennedy in the height of last year's 1-800- frenzy of Udall Bill phone
calls, and who talks about tolcapone and Requip like other aunts talk
about their most delicious recipes, were also expecting the videos we had
sent off from Maine.
All four videotapes should arrive today, so watch your mailboxes,
everyone!......
And then there was Sonia Neilsen in Denmark, excitedly waiting for her
videotape, who had just e-mailed:
" Hi "Santa" Ivan can`t hardly wait - just like christmas eve when I
was a child :-))
rm greetings from Sonia the lioness."
Her check had just come in from Denmark, and later today, we will be
packaging and labeling her video and others, so that Jay can get them to
the post office, our third batch to go out to the world.
WELL, going back to my story, when I finished making my presentation to
Rep. Allen and Jackie Potter, his chief of staff, with Amy sitting
patiently and smilingly alongside, Rep. Allen was convinced. At
precisely 12:02, just a moment after a huge, burly, but well-dressed man
signalled Jackie, causing her to vanish suddenly down the hall,
Representative Allen, having now taken a full page of hand-written notes
on a pad of lined paper, while listening intently to me and to Amy,
promised three things:
1) He will help out with whatever we do here in Portland for World
Parkinson's Day ( April11th).
2) He will deliver the videotape that some of you are now receiving, a
copy of which Amy and I brought along, to fellow Parkinsonian, Attorney
General Janet Reno. Ms. Reno spent six hours here in Portland today,
speaking to high school students among other things. She was due to
arrive at Rep. Allen's office just exactly when Jackie Potter hurried out
of sight.
3) he will take my plea, the letter I had posted to the List, TO FULLY
FUND THE UDALL BILL, to the President himself.
Well, my medications are wearing off, so I have to STOP typing and rest.
I am so excited that Rep. Allen ended the meeting with me by smiling, and
looking at both Amy and me, picked up the envelope with my e-mail letter
for President Clinton, and said determinedly:
"I will get this to the President!"
I guess $100,000,000.00 of Udall Bill funds is a step or two closer to
being a reality.
Ivan Suzman 48/10
