^^^^^^GREETINGS FROM^^^^^^^^^^
Ivan Suzman 47/10 [log in to unmask]
Portland, Maine land of lighthouses 60 deg. F crisp and breezy
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On Sun, 21 Sep 1997 10:56:43 -0400 Dennis Greene <[log in to unmask]>
writes:
>My wife Joanna (Jo to everybody) wrote this. I am sharing
>it with the list with her permission.
Hi Dennis G of Australia, Janet Paterson of Bermuda, Barbara Mallut of
California, Camilla Flintermann of Ohio, Dr. Charlie Meyer of Wisconsin,
Debbie Zalik , Ken Becker, JR Bruman, "SJS on the net", Barbara Patterson
of Canada, and many other listfriends,
I am writing today in appreciation of your many letters of concern for
me, in this year since I lost my home to fire.
I finally feel "moved back in," at least in body, if not entirely
in spirit, to the home that sits on the old foundation of my lost house
of the past, following the August 7, 1996 fire.
Dennis G's post about communicating with his wife Jo moved me to send
this off, before I try to arrange transportation to the little church
down the street where I've been asked to sing in the choir.
I am done posting about the National Parkinson's Foundation's
inexcusable abandonment of my care. I know some of you don't understand
what happened, and that's all right.
I know some of you have done everything possible, and for that, I am
truly grateful. I really don't expect a lawyer to materialize, this coast
of Maine being so far from the Miami scene of the disaster.
With my low income and 10th-year PD battle going on, Miami is just going
to have to written down as a lesson about the seductiveness of greed,
power and might. What a painful learning experience.!!
And for those of you who are still writing me , and trying to figure out
what to do to get the NPF to pay me back , thank you so very much. On my
tiny income, financial relief, if it can come, would make a huge
difference.
I'm back to my usual $100 or $200 in the bank, living between small
monthly disability checks. Right now, I am trying to figure out where to
get the money to buy storm doors, woodstove parts, firewood and window
covers , to ward off the upcoming fall, winter, and spring weather.
I've just started with a Visiting Nurse and Hospice Association
program. I was able to convince my family doctor to request a visiting
nurse and also a social worker, and weekly home visits have started.
The social worker is writing a letter to my brothers and my Dad. My
being gay, and therefore being undervalued and even hated, has taken a
huge toll on me. My Dad expected me to be married with kids, but God
made me a
wonderfully "different" son.
I guess the "Big Boss" :(what my live-in caregiver, Rose, calls the
Creator) had "special: plans for me.
Jane, the social worker, is coming here tomorrow to try to use this new
computer to get the letter done, with my active input. It's a letter to
try to prepare my father and older brother, whom I have not seen for five
years, for what they will encounter. I am nowhere near as strong
physically as they would like to imagine.
Hopefully, the letter will clear some of the past resentments about my
gayness away, and open the door for new and healthier relationships.
I have meanwhile (May 31) gotten the opinion of a neurosurgeon, Dr.
Gerhart Vries at Rhode Island Hospital, and HE RECOMMENDS BILATERAL
PALLIDAL STIMULATION, NOT PALLIDOTOMY for me!!
He performs pallidotomies, and said that 19 of the 20 he has done in
Providence, Rhode Islan are "successes." Yet, he says, for me, at my
age, and with what he knows, he recommends against pallidotomy, because
of a 15% risk of any of the following, on either the left or right side
of the brain. These four major risks are:
-cerebral hemorrhage or intracranial bleeding
-damage to the internal capsule, causing muscle weakness
-damage to my visual field, due to injuries to the blood
supply
-speech damage.
He says that there is a French neurologist, a Dr. Benedit (spelling?)
who has performed 200 pallidal stimulation procedures, successfully.
He encouraged me to e-mail Dr. "Benedit". Does anyone know an e-mail
address?
He said that pallidotomies will be going by the waysie in 10 years or
so, and that many American neurosurgeons are not going to be doing these
procedures, as pallidal stimulation becomes more established.
For me, as a low-income person, the $50,000.00 needed makes pallidal
stimulation inaccessible for now. More waiting, more PD deterioration.
. Autumn brings to Maine a quickening and a complicating of life's many
daily tasks. Like the squirrels and the chickadees, we speed up our pace
to ready ourselves for 8 months of cold weather
. Parkinson's presents me with its own tricks to cope with, and slows me
down, just when I need to pick up the pace, just as more and more layers
of clothes are worn like onion skins.
I wake up during the night and day from cat-naps and sleeps now, and find
myself in a strangely beautiful, and slightly surreal new house, built
up from the old foundation. I walk or hobble or drag myself down
hallways that have no light switches, where I reached for them in the
dark in years gone by.
I have to somehow reprogram myself to find knives, doorbells, keys and
even clothes. I know I'm in the new house, but my automatic, ingrained
patterns are deep-rooted.
Somehow I'm still in my old house, especially in the black of night.
Today (thank you! to God and Goddess) my team of new-found caregivers
and two old friends, are having a First Team Meeting here, in front of
the old, still disconnected Scandia woodstove, to talk about my ever-more
demanding care needs . This is a welcome bit of relief for me, and ends
my caregiver triple-whammy that I wrote about in the spring.
They are all riding the PD roller coaster with me. At least I don't have
to be the only health care manager here.
My friend Tom, whom I talked about going on Oprah WInfrey with me,
which started the Great Gay Debate on our list, will be here. He has
phoned me, or vice versa, every day since the August 7, 1996 fire, just
after Alan Bonander left us.
I'm feelng like a young pensioner in a house connected to my past, but
that past has to be veiled by an imaginary rose thicket I have created
in my mind.. I only delve into it when I am well-protected from the
fire's thorns, and keep my senses focussed on the scent and the images of
the imaginary roses.
Separated from my daily view, but still waiting for me, in the only
unchanged and unburned corner of the cellar, are white plastic bags with
burned or sooty papers , desk items, and parts of files, and a few old
boxes of slides of southern and eastern Africa.
Two surviving blackened sculptures need as yet unknown treatments, in the
hope that they may be restored and de-sooted. One is called "the
Ragpicker" and is a terracotta bust of an Afro-Cuban homeless man who
used to pick trash on Congress Street, looking for whatever he might find
useful.
The second is a chalk study for a bronze. It is an untitled, head and
shoulders bust of a simply GORGEOUS and muscular young man, sculpted
probably near Boston, in 1934, by immigrant sculptor Boris Paeff. I call
it, "the Dreamer."
After they are restored if possible, then I must make or find materials
for new sculpture stands.
Projects, projects!
My Sunday morning caregiver Michael, a nursing student, has just left to
take his son, Adam, crabfishing off the State Pier downtown, on the
waterfront. Michael uses old bicycle rims and home-made nets he sews
onto the rims to go crabbing.
My full-time caregiver on Sunday through Thursday until the end of
October, George, is riding his bicycle here from the hills of West
Falmouth and will arrive shortly. He drops me at the church , and later
picks me up to take me out in the Chevy Blazer. We go "junk-picking" for
about an hour and a half, if the weather is kind to us. We never know if
treasures await us.
.I am searching the "heavy items" (large pieces of "junk") that
Portlanders throw out every September, and which are left on the
roadsides for the City Recycling Center to pick up in huge dump trucks,
neighborhood by neighborhood. The whole process takes about four weeks.
Because I lost everything in the fire, I I look for things like
glassware, nighttables, tools, kitchenwares, basically everything but
clothes and boots.
Slowly I am reconnected, as my house accumulates the necessaries. The
strange but beautiful new shell fills with old wooden tables, stuffed
teddy bears, the aromas of Creole cooking and spicy vegetarian stir-fried
dihes.
Late summer cucumbers and cherry tomatoes fill bowls and bowls.
It's strange to be without a lifetime's collection of records, movies,
books, letters, photographs, artwork and painting supplies, birdwatching
books, and music.
My grandmother's mahogany piano that I grew up on, is gone. The new
"old" piano is a 99-year-old Chickering made of quarter-sawn, tiger's
eye oak,
Its history is still a secret to me.
I use the piano to practice the rich harmonies of the 10-voice choir of a
small church nearby. Knowing that I had performed downtown in the
40-voice Maine Gay Men's Chorus, but can no longer do all that stage work
and so forth,the choir's director approached me.
She has asked me to be one of its two bass voices, and continue
singing.
I can sit in a chair and sing if my meds aren't helping. So, I do it.
I am being helped right now by faith. I must get ready to leave for the
choir.
Have a beautiful Sunday.
Ivan Suzman Portland Maine
