I have begun to believe my mind is full of tiny little topics that act like pimples.

No one can predict the order they start to fester in, or when they’ll get ripe and burst.

Tuesday, 5 November 2013

A Word of Advice to the Critically Ill and Dying



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.