You Never Know What Tomorrow
Will Bring
Don’t Let This Happen
I was hesitant about sharing this part of my life
with you because it was too personal and even today seventeen years later
reading it brings pain and causes tears.
It is the Introduction to a Blog
I wrote it following the death of my son: Blaine
LeRoy Barrett, Jr. (Lee) April 1, 1996 in the May Gutteridge
Hospice (May’s Place) in the Downtown Lower East. It’s not a nice or pretty
story and it happened as the result of one technicality. Our son: an adult,
terminally ill AIDS patient came out of a six week coma: mentally incompetent,
suicidal and unable to direct his own medical treatment. The minute he was
declared incompetent, we lost our rights as parents to influence his treatment in
any way and to be fully informed as to the progress of his treatment.
From that point on, Lee fell through every crack in
the medical, mental and social assistance systems and 200 days after his
admission to St. Paul’s Hospital in a coma he
died at May’s Place.
This post is directed to any adult, and their
immediate family, who has an illness that could be terminal, to imagine
themselves in Lee’s place, going into Hospital in a coma to die. At that point
you need a relative: if you don’t, ensure you have a back up.
Imagine! You are in a coma and you want
to die at peace. What happens if you wake up blind or paralyzed, semi conscious
but unable to communicate. Find yourself someone you can trust to give your
Living Will to and make them understand your wishes. We understood our son’s
wishes all too well but no one else did. Nobody involved had any idea of what
was happening and neither did I until I read his 1000 page medical file and his
personal diaries. The left hand had no idea what the right hand was doing and
we were denied access and denied any control over Lee’s treatment.
Not only advise your representative what your wishes
are but also with whatever documentation that you need to enable them to take
legal control of your future according to your wishes. At the time of Lee’s
death in BC it was a Designation as your Medical Alternate.
Without that you’re screwed
I won’t proceed much further with an introduction
but as an additional incentive to read the blog, the excerpts quoted from Lee’s
journals and the thoughts that dominate in a mentally disturbed mind. A
depression so deep its central focus was suicide and constant ideation of how
to do it. My final advice
COVER YOUR ASS!
You don’t need the kind of
shit that follows.
Preface
During
the summer of 1996, Vancouver, B.C., was the site of an International Conference on
AIDS. From all the various media reports it was a resounding success. Visitors
to the Conference arrived by the thousands and hotel rooms were simply
unavailable. All the main thoroughfares in the downtown area were festooned
with colorful banners. The ringing cash registers of the restaurants and retail
establishments in the downtown core, and the glowing reports in the media was
music to the commercial sector. It was an exciting week for all who
participated. There was a protest parade before the opening. Act Up arrived and
acted up. Jean Chretien, our Prime Minister, apparently felt it impolitic to
appear to open a Conference about a "fag" disease. To the delight of
all the AIDS infected and affected attendees, he consequently had his ass
chewed out for both his failure to appear and his lack of leadership in
developing a "National AIDS Policy" by no less than Elizabeth Taylor,
bless her heart. His lackluster subordinate, the Minister of Health, was
soundly booed from the podium and a great time was had by all. But in the now seventeen
plus years that have passed, nothing has changed.
One
of the central activities of the Conference was an Art Exhibit with AIDS as its
focus. It was located in a lower forum at Robson Square in downtown Vancouver and it was beautiful. It contained, for local content
and interest, the work of three B.C. artists. One was the noted Joe Average who
had designed the Conference Logo. Another was another not known to me but who,
like Joe Average, had a considerable biography beneath his name. The third was
the work of an unknown artist with no biography.
His paintings were mounted together at the front of the
room directly below a large overhead quilt that stretched completely across the
ceiling from one end of the hall to the other. Each of the small panels from
which it was constructed listed the name of an AIDS victim from one small
African village and the panels were manifold. The rest of the exhibits,
beautiful in execution, graphic in their impact, and tragic in their subject
matter, stretched around the hall in a seemingly endless parade of faceless
names and nameless faces.
The
work of this third B.C. artist, as displayed, was a large pencil self-portrait
of the artist at the age of eighteen that was superb. It was accompanied by two others, a raging
abstract- "My Fear of the AIDS Virus", and another collage
entitled " The Impossible Today, The Miracles Tomorrow". This
work on display was the only one that linked a face with a name. Under the
large self-portrait was a small label reading:
Lee
Barrett
1964-1996
Of
all the thousands of curious enquiring minds that visited and viewed the
exhibition during the week no one ever followed up on this singular anomaly. No
one asked "Who was he?",
"Where did he come from?", "Did he do any other
work?", "How did he die?". If anyone did ask they could get no
answers, for The Organizing or Selection people had no idea who he was before
they selected three out of the forty-three works he left when he died.
In
addition to his paintings and drawings, he left nearly fifty volumes of his
daily journal chronicling his life and thoughts from 1982 onwards. These, he
left to me, his father, with the stipulation that I read them. I have done so,
and have gained an understanding and respect from that reading that I will
forever treasure.
His
life was a tragedy. He never fit. As a child, as a youth, as a student, as an
artist, as a homosexual, as a patient- he never fit. His was a life of pain, of egocentricity, of
depressions and euphoria's that culminated in a disgusting failure of the
Medical, Mental Health, and Social Services in their efforts to help him. He
fell through every crack in the system and he died in poverty in a Hospice in
the downtown East Hastings area of Vancouver.
He deserved better.
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