During the summer of 1996,
1964-1996
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
Lee's Lament
What is it that he needs to say?
Is there really a point to anything?
Really, what is the use of it all?
Of all the lost dreams that he had, not to mention the fact
That his sexuality has never been fulfilled,
Even though it was due to his sexuality
That he now has this disease.
It is as if he no longer can make sense of anything with life,
Nothing.
Who cares, really?
What is the point?
Why bother?
Let him just type away in his apartment,
Listening to music,
Burning incense,
Tending to his orchid plants that will more than likely
Never bloom again.
As he has not.
he finds it hard to derive pleasure from drawing and painting as he used to.
no longer,
not even masturbation,
only a mere release.
it has only been recently that he needs to write,
lament towards the world,
of its cruelty,
of its lost hopes and dreams.
so what is the use? he asks.
why not just slice my wrists now
and get it all over and done with,
save myself future pain.
he can't bring himself to do it-
the blood
the mess
others to think and care about,
and then there is the orchid plant to care about
as it still may bloom
like myself.
why he sees this we do not know.
he no longer knows if the disease is only an excuse,
an excuse, so as to prevent him from blooming.
he is afraid of his capacity as an artist?
or perhaps afraid of expressing to others?
after all, they've all been fearful of what he has expressed
before.
he does not know,
has always asked why,
yet has never received the answer.
what is the use, really,
he asks: what is the point? so i bloom
i begin to paint and draw again,
for what?
only for this disease to take it all away from me.
it is not that he fears death. no, not that
rather the fear of disease,
emaciating away,
the way flowers do when they wilt and die,
fall out of existance.
it is in this instant he realizes
a flower cannot wilt and die if it has never bloomed
is this what he is holding on to?
is this the reason behind his fear to paint and draw again?
it is as if he is trying to murder himself the way he has been
smoking so many cigarettes, drinking so many beers.
who cares?
what is the use?
what is the point?
and why bother?
it'll be this disease that ravages my being and nothing else.
no, he claims, always trying to.
no, i must bloom, change, live and create.
i must at least try.
at least i must do that.
so he tries to write,
a sort of fertilizer to get the creative juices flowing.
perhaps once the juices are flowing he will once again
begin to paint and draw.
so he hopes anyway.
he became lost in this hope of writing to the point
of smoking far too many cigarettes and drinking too many beers always with bach playing on the near obsolete
record album player and
incence burning.
and so he wrote one evening, this:
lay on bed of never-ending transparent realities
as i struggle to focus on my dreams.
uncertain of my own thoughts and emotions
i continually try to validate them in a reality i know not.
existing beyond recognition
i stand alone
with sex organs in hand
encompassed with musical tones that beckon.
i cannot fly as of yet
so i am certain of my own existence in a way
i do not understand.
and it was later he wrote this:
the incense burns
and so do i
my thoughts evaporating into the chaos around me.
i've nothing to hold on to
save for the moment
for only it matters
anymore.
of secret gardens that exist beneath my soul
i fear of discovering
for fear of hearing my own voice.
it was later, another time,
the middle of the night. he had awoken in a cold sweat.
not fearful, just alone,
and he wrote the following, had to,
it was compulsive almost.
it is only within the comfort of my own bed
i stroke penis
with fantasies in mind
needing expression
that i spill out on sheets
then weep into pillows
for one to understand
love.
Lee Barrett- 1995
Alone in Vancouver
Lee's l ife was screwed up from the start. He was born June 17, 1964 on Father’s Day, and I think this was the proudest day of my life. He was a big baby, 8 lb. 15 oz. and he was different. From his earliest months he began to show signs of a defiant obstinate nature that developed into a resolute personality who refused to accept control by anyone, or any authority, without his prior agreement. When he was 9 months old he defeated me in our first real clash of wills. On this occasion he was put to bed for the night but he simply would not accept this action. He continually stood up in his crib, grabbed the headboard and shook it violently until his crib had moved across the room. I laid him down, he got right back up, I threw him down, and he got right back up. I spanked him, rapped his knuckles on the end of the crib, tried my damnedest to bend him to my will, but he refused to lie down for the night. In the end I entered the room for a last time in a rage. I have no recollection of what I intended to do to him, but Lee stood at the head of his crib, glaring at me, screaming his defiance at the top of his lungs. I capitulated and retreated from the battle of wills, He had defeated me.
He was an extremely difficult child to deal with at the best of times. Corporal punishment could force him, on occasion, to comply with household rules, but only if his resistance was token and he felt that, perhaps, this time, the request was reasonable and not simply an exercise of our parental authority. Reasoning with him might work today, but not tomorrow. The same uncertainty held for almost every other form of approach to get him to behave and act in what we considered a proper fashion. An example of this reluctance to submit to authority was demonstrated by a conflict between us when he was only three years old. At this time of his life, he discovered he could really get under our skins when he got mad at us if he simply spat on the floor. No amount of reason affected this behavior, nor did any form of punishment, physical or psychological. Promises of rewards were ignored, and the withdrawal of privileges was met by an almost fatalistic acceptance of the loss. Nothing we tried could make him stop this extremely irritating expression of opposition to any number of situations that did not meet with his full approval. The end of this extremely irritating habit only came when, one day when he spit on the floor, I thought, "Well, it works with dogs.", grabbed him by the back of the neck and wiped his nose and face through the puddle of spittle. He never again spat on the floor. This time I defeated him.
When he was about ten years of age he began to show the first signs of an artistic bent. We encouraged him in his artwork, and Lee responded. Our appreciation of his ability to draw seemed to strike a responding chord somewhere in his psyche and he blossomed in front of our eyes. He finally seemed to find a sense of self worth and value in his life and his behavioral change was amazing. He seemed to mature almost overnight. He decided he was destined to become an artist, to create things of beauty, and he spent nearly all his free time with a pencil and paper drawing everything that caught his fancy.
By the time he was twelve, he showed signs of a prodigious talent. With no formal training he could take up a pencil and within minutes create on paper a likeness of a person’s face that was accurate, recognizable, and most remarkable. Not only was it an accurate portrait but he was able to capture expression, emotion, and feelings and somehow show something of his subjects soul in his finished sketches. As parents with virtually no talent, we were at a loss as to how to deal with this sudden prodigy. After a great deal of searching for resources to foster his talent we were finally referred to C.W. Jeffries High School in Downsview. As we had been told to, we advised Lee not to get his hopes up. Entry requirements were exceedingly tough and very few applicants were accepted. To get accepted you had to present your portfolio, be interviewed, and demonstrate to the school that you were a worthy candidate for admission.
Lee’s response to all this cautionary advice was a simple "Is that all?". He took matters into his own hands, visited the school to see what they had to offer, decided he wanted what they had, and within three months assembled his portfolio, had us arrange an appointment with the admissions office and was accepted into their Fine Arts Program. For the next three years he and his talent thrived in an environment that demanded excellence, that encouraged him to commit his soul to paper, and that provided him with an excellent training in many media to assist him in meeting and exceeding their demands. Lee was happy and contented for the first time in his life and then I ruined everything for him.
In the latter part of 1979, acting with my usual combination of high principles and inflated sense of self worth, I indulged in an act of extreme stupidity and told the President of my company the truth as I saw it about his management of the firm. Unfortunately, principles and worth can never adequately compensate for terminal stupidity, and the decision that my services were no longer required following our heated discussion had disastrous consequences for Lee.
The sudden unemployment that followed my rash action, and the dim prospects of the Toronto job market at that time resulted in a relocation of our family to the armpit of the western world, Cincinnati, Ohio. Our daughter elected to remain behind to finish her schooling in Toronto, but Lee was forced to accompany us, and for him this was a journey to the end of the world. Even though he was immediately accepted at the Cincinnati School for Creative and Performing Arts, he felt let down, both by us and the "System" in general. The Fine Arts Program at the school was not nearly as intensive and demanding as that in Toronto. His teachers, though well intended, were simply not of the same caliber as those he had left behind, and Lee soon had them assessed as "a bunch of God-damned amateurs" who knew less than he did about many of the fundamentals of artistic creation. He resented having to spend the majority of his class time learning "Bullshit American Propaganda", and within a matter of months, he was in an ever increasing spiral of conflict with the school. He nevertheless managed to finish and pass his school year, but he refused to go back for the following year.
We were at a loss as to how to handle the situation. We knew Lee well enough to know there was no way we could force him to do something to which he was opposed, but we were able to convince him not to drop out of school entirely, but to try to finish his high school and graduate. Lee, accordingly, opted to transfer into the Cincinnati Public School system and he was enrolled at and attended classes at Hughes High School.
Lee’s time at Hughes was a complete disaster. The majority of the students at Hughes were black. Not only were they black, they were by and large a motley collection of urban, underprivileged, street-wise, drug hustling virtually illiterate niggers. Lee was a literate, artsy-fartsy, smart, privileged, totally naive, white boy who couldn’t play basketball worth shit, and who, in addition to all these other sins, talked funny, even if it was English. The culture shock was too much for Lee to handle. He did try, but there was no way for him to win acceptance from his peers and he soon began to skip school because the punishment he could expect from me was trivial compared to that handed out to him daily by his classmates. It was a no win situation that went on for months until we finally agreed that Lee drop out of school and find some sort of work. He honestly did try to find a job, but there was nothing available. His job search gradually lost steam and eventually became only cursory in order to placate me and get me off his back.
One evening as Patti and I sat at home watching TV, the phone rang and the Desk Sergeant at the local Cincinnati Police Station advised us that our presence was requested at the Station as our son was now there in custody. It seemed that one of the local patrols, while on their rounds checking out the local Park which closed to the public at 9 o’clock, had discovered Lee and an older dancing partner indulging in what only can only be described as a moonlight frolic. The fact that neither of these individuals was wearing any clothes at the time of apprehension didn’t help matters at all. Just bloody great. What next?
We bailed Lee out and accompanied him to his court appearance where he was given probation, and we were advised to get him some sort of counseling. We arranged for him to see a psychologist who, over the course of several months of exorbitant fees, did help Lee to adjust and deal with his new sexuality. The same can not be said of the Juvenile Probation Officer to who whom he had to report on a weekly basis. At his first meeting with Lee he questioned him about his sexual experience and stated, " Boy, don’t you hand me any of that bisexual bullshit. You’re gay. Accept it and deal with it". Lee did, I couldn’t.
My ego took it almost as a direct insult. I asked myself questions for which there were no answers. "How had I failed him as a role model so badly that he had chosen his mother’s sex over mine?". "Was homosexuality genetically originated?". "Had I contributed to this by paying too much attention to my work and not enough to Lee?".
Patti was much more accepting and reasonable in her approach to the matter, and with her help I came to understand that for Lee it was not a matter of choice, he was born as he was. He had been different all of his life and we were aware he was different. Hundreds of previously inexplicable incidents of his sensitivity and different behavior suddenly began to make a whole lot more sense. We came to terms with Lee’s sexuality but I finally ran out of patience with his fruitless efforts to find a job and told him, "Go to school, get a job, or get the hell out!!" and meant it. At this time Lee and I had what was probably our only in depth discussion of his homosexuality. He had taken to announcing not that he was homosexual or gay, but rather that he was "gifted", and I challenged him on looking on his differences from "normal" as being a gift. I explained to him that rather than a gift, it seemed to me to be a rather heavy burden. Whether he was gay or straight, I loved him. Whatever sexual practices he indulged in were none of my business. I would never inquire as to their nature for this was a matter that was in the realm of "personal privacy" and I would never intrude. What did concern me was his seeming lack of awareness as to what he was facing in his new life; the bigotry and discrimination that he was bound to encounter from the religious right, from employers, from the government, from any variety of sources. What concerned me the most, however, was the transitory and temporary nature of homosexual relationships. I was very worried that he would go through life and never experience the permanence and sense of security, trust, and love that I had found from my long relationship with his mother. Lee heard me out, told me he was already aware of many of my concerns, and told me not to worry, he could take care of himself. Lee moved back to Toronto in 1982 and Patti and I packed up, bought a $350 travel trailer and moved to Florida.
Lee had a pretty rough time of it in Toronto, but he stuck it out. He tapped into the Welfare System, got a series of short lived temporary or part time jobs, and survived. He was too obstinate to do anything else. You do whatever it takes to get the job done. He also collected a circle of friends and acquaintances within the young Toronto Art scene. He spent money for food on art supplies and beer, and he painted in a frenzy everything he saw. None of this work survives him. He gave it all away. Once he had a thought down on paper, he lost interest in it and moved onto the next creation of something beautiful that he saw. His diary from this period is filled with creative ideas that are unique in his view of his world.
" So, let’s say I go down to the Sally Anne Thrift Store
and get an old doll with a busted head and an old bird
cage and I’ll stick the doll inside and I’ll hang a label
around its’ neck that says, BORN INTO SOCIETY and
I’ll sell it for fifty bucks. Neat, huh?"
Patti and I had an understanding with Lee that he could always phone us "Collect" and Lee really used the privilege. He had severe bouts of depression, and he called us on a frequent basis, usually drunk, crying and incoherent, sometimes talking of suicide. I also found from reading his diary that at times he was so desperate for funds that he had to resort to selling his blood. He never once asked for assistance.
In 1984, my brother Larry, and his wife, Janet, rescued Lee from his destitute circumstances in Toronto. He was transported from downtown Toronto, with all of its stimuli to the intellect, to Mulhurst, Alberta. pop. 50?. In exchange for his services as a companion and helper for Janet in taking care of his cousins, Cindy and Tony, and for assisting with the management of the small herd of Pomeranians that Janet bred for Show, Lee was adopted into their family and for a time seemed happy. I think they initially thought that a steady diet of home cooked meals and a large dose of mothering would "cure" Lee. They were wrong, but the move was good for Lee. He was included in the center of a "family" . He had responsibilities caring for the "Herd", He had two younger cousins who came to be his friends, and he had Janet as a sort of personal confidant to whom he could talk. He had lots of free time, really worked at his art, and he did some great stuff while he stayed with them. He got a job as a waiter at a local cafe and things seemed to be going smoothly until one day he said, "Screw you! I’m moving into Edmonton and live with David." and that was the end of that.
During this time we paid for Lee to come down to Florida for a two week visit and I think this visit with him was a turning point in our relationship. We really began to know Lee for the strange and wonderful son that he became. He was polite, he was caring, he remembered unimportant things that when recalled, regained the lost importance of the time. Every gift Lee ever gave showed thought and care and consideration as to its suitability. We sat and talked, drank beer and laughed and smoked some reefer and laughed some more. We enjoyed our time together and then he flew back to Alberta.
In 1986 when we again saw Lee, he appeared to have settled down. We went to visit him in Edmonton while on vacation and again we had good time. Lee had broken up with David and at this time was attached to no one. He shared a nice apartment with his friend James who both Patti and I immediately liked. Lee had steady employment as a waiter at Tony Roma’s Steak House and was working at his artwork with a passion. One night while we were there, Lee and James, backed up by several other friends, a reasonable number of beer and a couple of joints, all ganged up on Patti and me and convinced us to accompany them to an evening out at Boots and Saddles, a gay bar somewhere way out on Jasper Ave.
I have never had so much fun in my whole life. There must have been 100 gays and lesbians in the place and these young people really knew how to party. There were drag queens who were absolutely bloody beautiful and so outrageously bitchy it was hilarious. Damned good music, dancing, hustling, and just plain having a good time, Lee and his friends gave us a memorable welcome to Edmonton. I will never forget that night and the way Lee reacted to our acceptance of his friends, and to their acceptance of us as his parents. Lee never forgot either.
In 1987 we returned to Canada and stopped in Kelowna . This move was ill advised for after arrival I found virtually no market for my talents and in 1988 we moved to Sundre, Alberta to live with my mother. In 1989 we moved into Red Deer where, with a view to a future six months North and six months South, I completed an Apprenticeship as a Recreational Vehicle Mechanic in 1991. During this period we could have frequent visits with Lee, and he and I had a chance to really talk to each other. Much of the time I spent with him was like that of two strangers trying to find out who the other person really was. I found that he had spent much of his time well since dropping out of school. He had read prodigiously and had developed a keen and inquiring intellect that pondered immense questions related to the meaning of existence. The relative merits of various belief structures was of great interest to him and he could quote at length from sources as diverse as the I Ching, the Koran, and Buddha, ad infinitum. His favorite author was Anais Nin, his favorite photographer was Man Rey, and his favorite artist was Egon Schiel. I knew none of them and Lee introduced me to a totally different perception of life and reality by challenging me to argue with him. A conversation with him was mental exercise just trying to follow his reasoning through the maze of convoluted logic that had bits and snippets of all these strange influences, all mixed up but somehow reconciled in his own head. Weird and wonderful conversations that I truly enjoyed.
His talent had truly flowered. Watching him as he worked, I was continually amazed at the truly awesome eye and hand coordination that made his creation of things on paper seem so effortless. A flower, seen in a flash glance, was a dictionary of minute details that flowed out of the ends of his drawing instruments like a series of programmed instructions banked in a computer memory. Never a hesitation was evident when he worked. The ease with which he created things of beauty, and the way in which he saw the world around him were in sharp contradiction to my pedestrian habits and methodology, and my somewhat jaded and disillusioned view of reality. I grew to respect him as a person. I had always loved him as my son, even during our worst times, but now I found that I truly, truly, liked the boy. His visits were welcome interruptions of our otherwise boring and pedantic life that consisted of eating, sleeping, and working to keep a step ahead of the wolf.
In 1988, Patti and I paid for Lee to relocate to Calgary where he was going to pursue further Art instruction. He made the move, found an apartment he liked, and got a job as a waiter at the Cheesecake Cafe in Calgary. He had a lot of young fellow waiters and waitresses with whom he could drink and party and talk outrageously. He was surviving fairly well and seemed to have an eye on a future.
In early 1989 this bubble burst. Lee went for dental treatment of his wisdom teeth. The visit resulted in a refusal to treat him, a referral, a test, and a diagnosis of HIV positive. Somehow we survived the "Doomsday" paranoia that sets in immediately and life continued on. Lee kept his medical appointments, had a positive attitude or front, and stayed relatively healthy. He had on and off bouts with thrush, and dental problems but his life had not changed all that much. Doomsday somehow got pushed to the back of our minds and life went on for close to two years.
In 1991 in May I went to work at the RV Dealership I worked for in Red Deer, and discovered that all the locks had been changed by order of the Receiver. This resulted in very short order move to Surrey, B.C. for I had managed to find a decent paying job and you go where the money is. Things went well for about 5 months and then we found out that Lee was no longer able to work, and was living on Welfare in Calgary. He had developed Peripheral Neuropathy in his extremities and he simply could not stand on his feet for a shift as a waiter, the pain was just too much. At the end of November, 1991 I hitched up to my utility trailer and drove to Calgary, loaded up Lee and all his possessions and brought him back to Vancouver to live with us.
To understand what Lee was going through at this time, imagine that you’re sitting with your legs crossed and one of your feet has gone to sleep. You get a severe case of pins and needles and when you try to step you can’t really feel the floor and it hurts. You get up and stumble around and the blood gets running and eventually the pain and the pins and needles go away. With Lee these never went away. On several occasions in the first months that he lived with us, we found Lee, in the middle of the night, sitting on the edge of the tub, crying, while he ran cold water over his legs from the knees down, trying to make the pain stop. He eventually managed to get over this but never again did he move with his usual grace and balance.
This was the beginning of Lee’s individual walk through the mine field of the AIDS related problems that led eventually to his death. He stayed with us for about 8 months, moved out to a shared apartment in Vancouver’s West End, then moved to his own place on Main and 12th., In November of 1995 he again moved back in with us and he stayed until June of 1996, when, despite our misgivings, he moved out to an apartment at 6th and Main. The only constant thing in this whole period was Lee’s Tuesday morning appointment with Dr. De Wet who treated him for if not one, then two, of any of the following, in any order, at any given time:
Venereal Warts- Anal and Penile
Hairy Leukoplakia
Candida and Thrush
Night sweats
Acute Psoriasis
Insomnia
Erratic Sleep patterns
Floaters in his vision
Nasty painful itchy shingle attacks
Recurrent neuropathy
Wasting away- severe weight loss
A total loss of self image.
Depression
During all of these episodes of aggravating problems, Lee just kept on trucking., but he began to hate his existence. He was plagued by recurrent bouts of venereal flat warts on both his penis and anal areas. This was treated by applications of Pedophilin, a caustic compound that left him in great discomfort for at least a week after each application. What started as a mild case of psoriasis developed to a point where whole areas of his face and body were encrusted with a crazy quilt of small diamond shaped plaques of dead skin surrounded by sore red borders. Lee was always very conscious of his appearance to others, and he fought a long and hard battle with this ugly disease. The only treatment to which his psoriasis responded was Dovanex. It was messy to apply with the consistency of axle grease but it did help. It removed the dead white plaques but left in its place reddened blotchy bare shiny spots. The results were better but messy. Lee was intensely aware of his impact on others and he hated what he had physically become. He was always a sun worshipper, but shame about his body deprived him of the pleasure of sunbathing, or of even wearing short sleeved shirts.
During the course of his last stay with us, Lee began to withdraw. Patti's best friend, Erna, an elderly Danish lady, was diagnosed with terminal cancer, and Lee watched his mother care for her friend, and then be crushed by her death. Our conversations shortened and then almost ceased. The floaters in his right eye refused to dissipate and he developed a severe squint. Eventually he could read with only the greatest difficulty and another of his favorite pastimes was lost to him. More and more he retreated to his room and avoided contact with us. He came to feel that he could spare us the further pain of witnessing his continuing deterioration, and in June of 1995, against our advice, he moved out to an apartment in the Downtown area that he loved.
He visited us in Surrey on weekends and sometimes in between for the first several weeks, but then his visits slowed to once every two weeks. He seemed to be doing well, but reading his diary has led me to discover otherwise. He actually was going through a very rough time. The days were spent in acute depressed spells when he contemplated suicide. He could not sleep for the night sweats and his sleep patterns were all screwed up. Lee felt he could control both to a degree by consuming alcohol, but life on Welfare did not supply the funds. Then fate struck in late July in the form of a cheque for nearly $5000 in retroactive benefits from his Canada Pension Disability which was finally approved. Lee stashed the money in his bank and then went on with his routine, but now he had money and this in itself gave him a new set of problems. The B.C. Government with its usual attempts to save money by picking on those least able to protest, had adopted a policy of reducing the payments of Welfare recipients by the amount received from Canada Pension Disability. This was particularly hard on the AIDS infected population of the province. Their increased need for additional nutrition to maintain a level of health and stay out of hospital was totally ignored by the NDP. Any identified recipient of a Pension found their Welfare payments reduced by the total amount of the pension received. This condemned all these unfortunates to life at the poverty level. Lee became paranoid they would discover his additional income and this aggravated both his depression and his inability to sleep.
Now having money at his disposal but plagued with his depression and erratic sleep pattern, he began to experiment with his alcohol treatment. He found that if you drank a six pack before you went to bed you just might get a decent nights sleep and not wake up in puddles of perspiration. Even more wonderful, he found that if you had a couple of shots of brandy with your morning coffee it does help keep the depression in the background. His alcohol consumption increased almost daily throughout August and September. Eventually Lee simply holed up in his room, laid in a supply of booze and tried to drink himself to death.
XXX
What are you to do? We respected his rights and minded our own business.
It soon became apparent to all that Lee had suffered considerable mental and neurological damage. He had virtually no short term memory, extremely poor judgment, and almost no insight at all when it came to the severity of his condition. We seemed to lose all control over the course of events. Knowing Lee as we did, we repeatedly warned the staff at the Hospital that Lee was not himself. Given his independent nature and contempt for any sort of constraint or restriction by “authorities” we felt there was an extremely high probability that Lee would escape any confinement against his will. Our warnings were simply ignored and our information pipeline seemed to dry up. During this period, Patti and I, his parents, were relegated to the role of bystanders with no input or control over events or Lee’s treatment. We became concerned about this exclusion and I contacted the Advocacy Group at People With AIDS. We were given to understand by them and other sources at the Hospital that he was 31 years old, of the age of majority, had neglected to file either a Living Will or to designate us as Medical Alternates and consequently as his parents and next-of-kin we had virtually no rights to any “Confidential” information, much less any control over his treatment.
In hindsight, this reluctance to involve us or inform us adequately seems to have been the result of an exaggerated importance of a finding, that Lee had a "problem" with his mother, in a report by Dr. Pezzot, a consulting Psychiatrist , who saw Lee briefly for a series of fifteen sessions during the period Sept. 17,1994 to May 4, 1995. This apparently bore great weight with the attending medical staff. Dr. De Wet, who had been Lee’s Physician since we brought him to Vancouver in 1991, should have known better. At one meeting with Dr. De Wet in early October I asked him “How well did you really know Lee?” to which he replied “Not very well. He was a very private person.”. Perhaps his "problem" with his mother, and the ignorance of both the staff and his personal Physician as to his personality and possible behavior could have been minimized by an equal importance being placed on another section of the same report which found:
" He could be quite impatient with both himself and others, was not big on trust, did not reveal too much too quickly and checked everybody out before disclosing any of his inner self. He had to decide whether they deserved to see this side of him or not. Hurt, anger and being taken advantage of abounded along with a sense of not being respected by others. The sense of having nobody on his side and not being accepted for who he was intensified loneliness and isolation. An ongoing concern was that no one understood him. "
Patti and I understood Lee, only too well, but we were excluded from the information loop, and no-one listened to our warnings about his mental problems and refusal to submit to authority.
On October 16th and 17th, Lee “eloped “ from the ward, went down to his bank in his hospital garb, and hit his account for several hundred dollars. He was returned drunk to the Hospital each time. Patti stormed down to St. Paul’s and demanded to see who the hell was in charge. She was seen by Dr. Onrot, Chief of Medicine on 7C, who quite bluntly stated that because Lee was capable of escaping, could navigate through traffic to the bank and the Liquor Store, and could use the money he obtained, then in the opinion of the Hospital, he was capable of functioning in the community at large and as soon as arrangements could be made he would be discharged. End of consult.
Patti and I were at a total loss as to what to do. It was obvious to us that Lee was not competent to survive on his own, that his mental condition was far from normal, but no one at the Hospital would listen, and they were planning on turfing him out in the street. How the hell do you get through to these people?
The next day Lee again eloped from the Ward, again hit his bank, and was missing when Patti went in to visit him in mid morning. She spent the morning looking for him in the downtown area, periodically checking back at the Hospital. Shortly after lunch he was returned to the Ward by the Police with his chin split open.. He was seen with Patti by Dr. Schick, another consulting Psychiatrist, who asked him about his exciting afternoon and how he had managed to split his chin open. Lee stared at him in disbelief and said “I don’t know what you are talking about. I was alone here in my apartment all day!”. He admitted to thinking about suicide all the time and was again "Certified" by Dr. Schick who also assigned a 24 hr. nurse to him.
On the 20th of October, we had a meeting with the Staff on 7C that turned into a disaster. We had made it perfectly clear to all the staff prior to this meeting, that having Lee return home with us was simply not a viable option in his condition. They were to have made that clear to Lee. The meeting was with Drs. Schick and Wiseman, Psychiatrists; a Psychiatric Intern: the Hospital Social Worker; Dr. Broster, the 7C Medical Intern, and another member of the nursing staff on 7C. We introduced ourselves, discussed Lee's condition and answered a few questions put to us by Dr. Schick and Dr. Wiseman. Ten minutes after we started, Lee arrived in his PJ’s with his 24 hr. watchdog nurse. We no sooner began to discuss placement plans and options, than Lee burst into the discussion and said he didn’t see where there was a problem. He turned to me and to him the answer was easy. He started to cry and pled with me to just get him out of there, "Take me home until I can get an apartment, Please!! Please!! Please!!!”
It was humiliating. There I sat on a stool, in front of an assembly of psychiatrists and underlings, social workers, Doctors and nurses, who sat there in silence as if they were watching an interesting study in “Family Dynamics 101” while I had to tell Lee “No!” I felt like a bug on a pin, and by God they watched me squirm for a time that to me seemed like forever. We left Lee with his attendant in their care and custody and went home. I was totally outraged by this turn of events and laid the blame on the 7C staff. No one was listening to us.
On October 23 I phoned the ward for an update on Lee and was made aware that as of Oct. 17th, Lee had been put on AZT by Dr. De Wet. As of today, the 23rd., his 24hr nurse was canceled by Dr. De Wet and orders cut giving him day pass privileges. Something here is not right. To my direct personal knowledge Lee was totally opposed to AZT treatment. He had taken it for less than one week previously for his psoriasis, but had concluded it was “garbage” and had thrown the balance of his pills out. Further, his refusal to take AZT as part of his treatment regime had occasioned several confrontory moments with Dr. De Wet about which Lee liked to brag. He had refused to take it. He was Certified incapable of managing his own affairs, yet his personal Physician (who admits he doesn’t know him all that well, “He was a very private person.”), suddenly after another later Certification, deems Lee capable of reversing a strongly held and defended belief regarding the inclusion of AZT in his Meds. Just where does a Consulting GP get the power to cancel the orders of a Consulting Psychiatrist in a matter related to Lee’s psychiatric state? Who the hell was calling the shots down there?
Patti and I had long and heated discussions all this week. The only way we could see open, to regaining any degree of control over what was going on, was to take Lee home with us after our next meeting with 7C staff which was scheduled for the 27th. It would be virtually impossible but somehow we had to do it. Total control over all things related to Lee somehow had devolved to a physician who didn’t know him very well, and a collection of caregivers who had only known him since he woke up with his brain fried. Within this group I had doubts the left hand knew anything, much less what the right was up to. Decisions were being made in Lee’s behalf without either our knowledge or consent. There was no locus of control or information with whom we could communicate. I spoke to Lee on the 25th on the phone and told him we were going to take him home after the meeting on the 27th. When he told me he planned on coming to Surrey the next day, I told him not to. "Don’t screw up now Lee. Just be good for two more days and we'll get you out of there". The next morning Lee appeared in Surrey. He didn’t even remember talking to me the previous evening. He appeared rational, more in control and in tune, and Patti notified the Ward and then spent a good day with him. I drove him back to the Hospital about 8 PM but he again eloped and returned to the floor, drunk and in possession of more booze which was confiscated.
On October 27th. Patti and I went to the “Family Meeting” and as usual Lee was no where to be found so we started without him. I proceeded to vent all our angers and frustrations dealing with the Hospital. After an initial tirade about the demeaning and insulting experience I had gone through at the last meeting, the barriers finally started to come down. Dr. Wiseman asked at one point, " Do you think that Lee could be manipulating you?", and the light began to dawn for both Patti and me.
For all his mental shortcomings, Lee had managed to maintain a position as a middleman and thus was in control of nearly all of the information flow. Now he was absent and we started to communicate without his intermediary filter. They felt extremely badly about the position I had been put in at the previous meeting. Contrary to our understanding, Lee was fully informed as to all aspects of his condition and treatment, and had been told that going home with us was not an option. He was a 31 yr old adult and they had fully disclosed to him all data re his condition. Lee either could not, or would not, remember or accept the information. His medical crisis was apparently over and his life was not in any immediate danger. There was no evidence it was a suicide attempt that had resulted in his collapse and admission to St. Paul’s, but rather an encephalitis of unknown origin. As a result of this episode they felt he suffered from AIDS dementia. His short term memory was severely impaired as well as his judgment. His depression was apparently of long standing, and it had not responded to any of the drugs that they had tried. Lee was convinced that alcohol was the only thing that helped his depression and drank to excess whenever the opportunity presented itself. He showed no insight into either the severity neither of his condition nor to any consequences of his actions. He was depressed, had suicidal ideation but no active intent. Since he posed no threat to himself or others they could not hold him against his will. We were wrong about several things and during the course of the meeting they convinced us not to immediately pull Lee out. We badly needed supports if we were to take him home and these took time to set up.
They realized that he could not manage on his own in the community without support and supervision, but there was an acute shortage of space in any facilities that might help. Normandy Hospital and one other facility had long wait lists for the 15-20 beds available. Social Work at St. Paul’s was trying to get him in one of these facilities but a short term solution was not anticipated. As a result of this first honest communication with the hospital, we agreed to a delay in his discharge that would permit us to get the supports in place for when we did take him home. A 2-3 week transition period was targeted and during this period they would help in any way possible. Lee joined the meeting about 2PM and complained of being very tired. We later learned he spent the morning having a pre-release celebration in a local bar. He took the news that he was not going to be released immediately very badly, but by the end of the meeting appeared to be resigned to and accepting of his release plans.. At the meetings conclusion, Lee escaped as soon as we left. He phoned me in the evening and asked where he lived, and I told him to go back to St. Paul’s. He was subsequently located wandering the halls of the Hospital about 11PM and was returned to the Ward.
The next morning Patti got a call from a very nice lady psychiatrist who assured her that Lee was again in custody, had been “Pink” slipped, and this time there would be a complete assessment of his mental state. “Relax, he’s safe, have a good day.’ At 7 PM we found out that Lee had escaped before the slip could be implemented. He was returned to the hospital by ambulance from a bar about 10 PM.
The next morning, October 29, the Ward phoned us to let us know that Lee was being transferred to 2 East, the Psychiatric Locked facility. We were not told the reasons for the transfer but we welcomed the news. He was safe, locked up, and someone was going to properly assess and help Lee with his mental problems. We were wrong. We found out much later that Lee had been violent on his return to the ward . He had been placed in restraints three times. Twice he had escaped, and in the struggles to subdue him he had twice struck nurses. The Nursing staff on 7C were rightly upset and wanted him off the floor. He now posed a “threat to others”, was Certified, put in a straight jacket, and sent off to the locked ward, Psychiatry- 2 East.
This transfer to a new set of caretakers effectively ended the open communication we had just managed to establish with the people responsible for Lee’s care.
On Nov. 1, Patti and I went to visit Lee on 2 East. We found he had a large bandage over his left forearm but he refused to discuss the matter. Patti asked a nurse at the desk what had happened and was told that Lee had slit his wrist during one of his escape attempts. A later examination of Nurses Notes for the days immediately following his transfer to the Ward revealed this to be a bald faced lie. No such wounds were noted by staff on 7C when they restrained him and put him in a straight jacket for transfer. No such wounds were found when he was removed from it on 2E The first mention of wounds is made in 2E Nursing notes after dinner at 1700 hrs. We were not informed of the incident when it occurred and when we did ask we were lied to by a staff member. This was a great start to a relationship that should have been one of trust, and understanding, and good intent.
On Nov. 1, during our visit to see Lee we were informed that he was 18th on the Wait List for a bed at
We had very strong reservations about his placement at
Patti and I were right in our reservations about
The next morning he left against advice about
they did tell us that Lee had returned drunk with a companion at
This is an extremely fast outline of what had to have been one of the most action packed periods in Lee’s life. As reconstructed with great effort, he was very active that night even though he started off with good intentions:
Lee's Journal Entry:
***
ambulance personnel brought me over. when i first arrived i thought this probably won’t be for me. perhaps it was the dingy white color of the hallway walls. the more i saw and got the feel for it i liked it better and better.
i asked the nurse about the cable tv and they lent me this really nice tv- hooked up and plugged in and i’ve got cable. so i wonder if the cable is free or what? meals come by a nearby hospital. i immediately thought “oh my god, gross food.” well this evening I quite enjoyed my dinner. rice, green beans and this sort of beef stew in a tomato sauce with seasoning. anyway I am most comfortable with the place. it has such a warm and healing energy about it.
and I find it so odd that it came up when it did. me, totally suicidal thinking of having to move into heritage house, and bango, I arrive back at the hospital and they tell me i’ve got a bed at
Nurses Notes:
0730- Up and about unit, taking meals well. Speaks when spoken to, angry undertones
1530 in his voice. Left unit to go to mail @ 1000, returned 1031. Left again@ 1300 to
go downtown., attempted to talk him out of it w/o success. Called Dr on call (Woodfall) & obtained order for accompanied person, but if he insists on it let him go. Lee’s parents in to visit at 1400 & made aware that Lee was off unit. Informed that we were not a locked unit, and we could not stop him. Gordon DORC made aware. Also 4 bottles of Tylenol and several nicotine patches found in Lee’s nightstand. Same placed under sink in Med room. Lee stated he would be back @1800.
1530- Lee returned as promised however he was quite intoxicated. Went into his room
2330 and fell asleep. Roused briefly to defer meds until later. Slept until about 10
o’clock. Up and down for smokes. Hs meds & 1800 meds given. 2255 overheard Lee calling a taxi from a payphone. All doors locked until I got a chance to talk with him. Lee was very upset he could not go out. I told him I was very uncomfortable that he should be leaving at this time. Became very insistent stating he would be back in one hour. Because of his compliance during the day, I thought it best to let him go rather than have his agitation intensify.
2330- Telephoned unit at 0030 stated he would be back in one hour. Speech slurred,
0730 refused to disclose his whereabouts. Returned to unit at 0430 in care of taxi driver and a friend “Heather” whom he had “met only tonight”. Paid taxi- on return with friend from his room- intoxicated, smelling strongly of alcohol, extremely unsteady on his feet. Reported to staff that he had “gone downtown to buy heroin to kill himself with” but instead had his wallet , ID and money “stolen”. Heather stated she had found him in an alley on
Lee's Journal Entry:
here i am downtown in a bar. the liquor store was closed due to the holiday so i came here. this morning i was massively depressed. i just wanted to die. maybe tonight i’ll try the tylenol. i have 4 boxes of it. if only i had heroin. i doubt the tylenol will work, but one never knows.
i wonder if i’m brave enough to jump in front of a train if i was totally drunk.
i’m feeling a bit better now that i’ve had a couple of drinks
i think that it must be inevitable that I suicide
i think about it all the time
if i had access to heroin i would have done it long ago
i was brave enough by trying to slash my wrist. too bad it didn’t work out. i kept gouging away at my left wrist. i guess i just didn’t hit a main vein i did cut a tendon though, that’s why my lower arm is in a splint.
its like alcohol pushes the depression away and just takes over i’d be relieved now if i knew the tylenol worked for sure.
at times I wonder why my life has turned out shitty- and has been shitty most of my life.
after here i’ve got to go to “the bay” to see if they have any head sets. i’ve lost the ones for the “walkman” tape player
i’m craving to listen to bach
my luck they won’t have them
really what are my choices? either to drink everyday to numb the depression or jump in front of a train?
this morning i was at the point i just couldn’t cope with it.
i was so full of anger for having this depression that i started crying and i just tensed my whole body and screamed mentally. it was not much of a release. i should not have forced myself to stop crying
***
i don’t know whether i like living at
the place lent me this really nice color tv i don’t know who is paying the cable but i’ve got it
i now think it is best i never moved in with mom & dad
i knew it would have been hell if i did. and the fact that i really don’t like them. everything is la-de-DA, superficial in a way. my mom hasn’t once asked me how my depression is doing, never once asked me how i feel.
i see that the problems with my parents has a big effect on me. i think i need to work it out with someone, when they said i couldn’t live with them, that’s what brought all of the past memories, feelings to me. that’s why i cry- because of them.
what i need is just someone to love and understand me
this month i have to give CPP my change of address. now they go to my parent’s place and i wish they didn’t as it forces me to experience them when i’d rather not. i have no phone and i think i’ll keep it that way.
i really can’t complain about the place meals are prepared, no dishes to do. i’m surrounded by friendliness.
lunch was the shits today- greasy sausage rolls. last nights dinner was really good though.
what more could i ask for: a soft nice bouncy bed, prepared meals, a color tv.
i must get used to being around these strangers with AIDS at lunch today i wheeled the skeleton man back to his unit. i call him the skeleton man because he’s like a skeleton? he has great difficulty moving his legs and arms. every time i look at him i think “ why didn’t he suicide when he knew things would get bad?” and then i think about myself- if i were in that position what would i do. the pain suffered would be incredible.
from my writing i’m sure you can tell i’m intoxicated.
***
here i sit this night at the dufferin drinking- again. i just had to fight the bawling of my eyes. my head keeps getting images of jumping in front of a train. earlier i decided to do the tylenol. it was not where i had it stored. i must have thrown it out in one of my drunken stupors. i think that these are the choices in my life- either suicide or drink a lot of alcohol everyday.
i don’t know if i should feel guilty or not for spending my savings on booze. because it’s
***
at least i don’t feel massively depressed. i think i’ve enough to drink to jump in front of the train. but i won’t- it’s not time yet.
i think about how i could do it- just jump and die immediately.
i’ve been spending far too much. this afternoon i spent about $20 and over this evening i’ve probably spent $40-$50.
3 beers is the limit, if your caught, otherwise i’ll been another
To round out the missing time between the Dufferin’s closing and his arrival back at Normandy with Heather in tow at 0430, Lee at some point decided to visit a local Shoppers Drug Mart where he managed to get caught by Security trying to shoplift enough Tylenol to kill himself .He was turned over to Vancouver City Police who decided that since he had, identification, money, an address as established by his hospital identity tag, to charge him with shoplifting but release him on his own recognizance. He then embarked on his downtown adventure with muggers and dopers and stuff.
Lee's Journal Entry:
i arrive home yesterday late night to find out that i couldn’t deal with. i was really drunk.
i awoke at
