Drop-kicking HIV/AIDS stigma to the curb


“This December I found a mass the size of a cantaloupe in my lung…I used social media to express my feelings without having to burden my family and friends.

I’d like to write a feature…that explores the way the Internet has changed the way we view illnesses, both visible and invisible, and how it’s changed our acceptance of grief and death…”

-Teresa Sarga

As I first reported on Facebook last week I had the opportunity to be interviewed by Teresa Sarga, a journalist and blogger from Syracuse, New York, about blogging as a person living with HIV/AIDS “…and more”.  The issue of stigma is being unearthed and critically examined more and more lately, which is a good thing.

I’ve decided that, so long as I am open, I am not letting stigma thwart me.

Stigma surrounding HIV/AIDS, in my case, began with me.

If anyone deserves AIDS, I told myself, long before I tested positive for the Human Immunodeficiency Virus, I do.

What a statement with which to live my life.

Fortunately I am able to unpack it:

-as if anyone deserves AIDS (or cancer or heart disease or diabetes)

-as if disease and illness discriminate

 

-

Post #1031: My latest ‘Aha!’ moment


I’m very close to finishing the book Survivor – Auschwitz, The Death March and My Fight for Freedom by Sam Pivnik and some two-thirds of the way through I was jolted by this passage:

We could have run, could have made it, could have reached the welcoming arms of the British, who surely wouldn’t fire on scarecrows wearing the stripes of a concentration camp? But we didn’t. None of us. And it’s something I’ve read about since in the memoirs of other survivors. The years of terror, of barbed wire, of electric fences, they never leave you. You turn in on yourself, hiding in the only Hell you know. Why? Because out there, in those fields and woodlands, across the ploughed farmland of North Germany was a world I didn’t know at all. I was just thirteen when the Wehrmacht invaded my homeland and in a way my life had been put on hold ever since. In a word, I was too scared to run away.

Almost an entire shelf of my book cabinet is stocked with various accounts of the Holocaust, a collection I started with Primo Levi’s Survival in Auschwitz on the recommendation of a psychiatrist I was seeing for post-traumatic stress that followed a serious accident in 2003.

While the ‘woulda, coulda, shouldas’ of Pivnik’s experience differ greatly from my own, I recognize my own mindset in how I processed difficulties in my childhood.  (By the time I was Pivnik’s thirteen years of age, I had experienced this example of the drubbing of a head teacher/principal in elementary school and the sexual abuse and subsequent exploitation at what I would now recognize as a sexual cruising area.)

I have long since absolved myself, intellectually at least, of any guilt in these matters.  However Pivnik’s laser-like identification of lingering fear - my fear, too, of the world – has amazing resonance with me.  It’s not the first time I have named fear as a foundational part of my emotional operating system, and I could quantify it in reviewing the hypomanic behaviour which has characterized my history with bipolar II, but to read Pivnik’s account is to affirm how I can relate my experience with what has followed.

(I still aspire to writing my life story, such as it is, told only in fits and starts in this blog.)

Review (and a personal retrospective) – Behind the Candelabra


With only the most scant help from Google I have been trying to remember more about my personal, professional meeting with Liberace (“Please, call me Lee.”)

It was some time in the mid-1980s, while I was working at a St. Catharines, Ontario radio station, when the subject of last night’s premiere of Behind the Candelabra was making one of his periodic appearances at Melody Fair Theater on Niagara Falls Boulevard in Tonawanda, New York – a suburb of Buffalo about a forty-five minute drive from St. Catharines.

My first impressions of Melody Fair were that it had seen better days (and it has since closed, demolished in 2010). The same could be said for Liberace who, after all, was some eight years older than my father who would have seemed “old” to anyone else in their twenties!

The meeting was what I have since learned was a very routine set-up between journalists, celebrity-chasers, and their self-important subjects. My allotted time of ten minutes or so was no more, on less than anyone else in line claiming “exclusive” access from their particular micro-market’s point-of-view.

I had come out relatively recently and took it upon myself to use my time with a slightly dressed down version of himself to tease out Woodward and Bernstein-worthy details of his private life.

What did he like to doon his days off, infrequent though they may have been?

Spend time at one of his several homes. He liked to cook for his “friends” (none of the bawdy details I would have liked to hear, of course, and portrayed in Beyond the Candelabra and Scott Thorson’s palimony-inspired book.

That’s all I remember about our conversation – riveting I know – having been derailed in my aim of making news out of what was inevitably to be a fluffy entertainment piece.

I grew up feeling a lot of antipathy towards the flamboyant, yet conflicted (a self-professed Roman Catholic) and ultimately talented pianist. This was no role model I would ever want to emulate, should I ever own my own homosexuality.

His age, I suppose, would also have been a factor in his denial of the obvious.

It was, however, his denial of what ultimately killed him that left me feeling quite angry – with him and his church. He never acknowledged dying of AIDS, swearing everyone to secrecy, which of course illustrated the stigma of the times (worse even than now) in his over-the-top way.

I couldn’t separate my feelings for him as I watched last evening, which is not to say that I couldn’t also relate to the inner struggles while recalling my annoyances with him.

Michael Douglas had a hell of a job to do which I found to be well done and credible. Matt Damon also proved himself to be a convincing actor in a gay role and a sympathetic character. In a supporting role I thought Rob Lowe stole the show.

I will watch it again, while it’s still in the HBO lineup, and while I don’t necessarily expect my feelings for Liberace to change I know I am capable of seeing him – jewel-encrusted warts and all.

Lunch with Vito Russo


Disclaimer:  My memories have been assisted by Google and a piece of paper, 8-1/2″ x 11″ divided in half, on which is written the following:



After signing up for The Movie Network again recently, I came upon the film Vito: A Man For All Seasons.  I was immediately transported back to the early summer day in 1982 when I met the celebrated author, filmmaker and activist Vito Russo. It was at a very ambitious conference, at the U of T perhaps, put on by, among others, The Body Politic collective called “DOING IT! Lesbian & Gay Liberation in the 80s”.

Vito put to words, and obviously used film clips, what he had done in the book but had us riveted with laughter during the presentation and in the question and answer period which followed.

Because I was staying with a couple of the conference organizers for the weekend and, I’d like to recall, at 22 among the younger guys there I was invited to lunch with Vito – then in his 30s and a real looker!

We walked to a patio along the north side of Bloor, I’m guessing near Brunswick, perhaps Dooney’s.

This sheet of paper protrudes from my copy of Vito’s book “The Celluloid Closet – Homosexuality In The Movies” which had come out the previous year (as had I).  I described to him how upset I was that I had not remembered to bring the book along on my break from my then-dreary existence in St. Catharines.  Such, apparently, was the extent of my troubles back then!  He thought nothing of just folding a sheet of copy paper in half and writing the cute note.  This story goes with it whenever the opportunity presents itself.

While I’d like to launch into a tale of love unleashing itself into a passionate, long-distance relationship, as we sat across from one another, I can’t even allow my “based on actual events” note to take me there, as much as I’d like to.

He vented about Ronald Reagan.  (By comparison we were experiencing the second go-round of Pierre Trudeau, the Charter of Rights and Freedoms round at that, with Conservative Brian Mulroney only in our nightmares.)

The documentary inevitably moved to the beginning of the AIDS crisis and its eventual taking of his partner Jim Sevcik in his thirtieth year.  That same year, 1985, Vito himself was diagnosed with Kaposi’s sarcoma and died in 1990, just a year-and-a-half or so after my diagnosis.  But what a difference there has been, both in opportunistic infections and in our respective treatment options.

Vito went on to become a founding member of the media-monitoring group Gay Lesbian Alliance Against Defamation (GLAAD).

In 1987 Vito, Larry Kramer and ten others founded ACT UP!, the AIDS activist organization which has been at the centre of some of the biggest developments in AIDS anger, compassion and care.  A clip in the film is of Vito shouting,

“People are dying of homophobia.  They’re dying of Jesse Helms.  They’re dying of Ronald Reagan…AIDS is a test of who we are as a people!”

Given all he went on to do in his AIDS-shortened life I count it a privilege to remember the joy of that day on a patio in Toronto and the personal touch of his autograph.

Ninety-five years since World War One ended for my great-uncle


An addition to this otherwise repeat tribute, the above photograph was taken in about 1900 when my paternal grandmother was an infant.  It’s now been over ninety-five years since her brother, Tom, (here with his foot up on a stool in the McIntyre Photo Studio in Perth) died on the World War One battlefields of France, roughly five weeks before the final  assault on Vimy.  By the time of his death, Grandma was acting as home-maker to her widowed father, her older sister Bea having pursued a secretarial career away from home.

Perth Courier accounts brought the war close to home.

My father, born ten years and one month after Thomas’ death, and who died in 2002, was given the first name of his late uncle.  As my genealogy project continues it is clear that there were many Thomas Butlers, before and after the young fellow from Harper, west of Perth.

Any memories of Grandma talking about him are filtered through the eyes of the child that I was when these stories were told – less interested than I am nowadays. How I would love to hear them again.  I can only imagine he went off to war because. at the very least,  it was the thing to do at the time.

This is how Tom’s death was reported, with a few more details, in the Perth Courier:

The Pte. Herbert Gibson mentioned as being with Pte. Tom appears in this subsequent article with vivid descriptions of the war:

 

 

My sister has a formal portrait of Uncle Tom, in his handsome uniform (different from the one in the press clipping), taken in Perth before his deployment, as well as a cloth belt which was sent home completely covered with various regimental pins from across Canada.

The newspaper clippings come from Veterans Affairs Canada, as do these copies of Uncle Tom’s ‘attestation papers’. (Looking at his signature, I can see an amazing resemblance to my grandmother’s penmanship, as well as my Dad’s!)


In the first part of “The Great War”, a film on CBC-TV by Brian McKenna, we learn that “Complexion: Fresh” was racist code used to distinguish caucasian from non-white soldiers, gladly accepted when county-by-county quotas were low, from their ‘fresh-faced’ comrades.

The Commonwealth War Graves Commission (CWGC) web site provides these stark ‘Casualty Details’ (I have added links):

Name: BUTLER
Initials: T
Nationality: Canadian
Rank: Private
Regiment/Service: Canadian Infantry (Central Ontario Regiment)
Unit Text: 75th Bn.
Date of Death: 01/03/1917
Service No: 787151
Casualty Type: Commonwealth War Dead
Grave/Memorial Reference: VII. D. 17.
Cemetery: VILLERS STATION CEMETERY, VILLERS-AU-BOIS

copy-of-vii-d-17.gif

There’s a bit more of an online tribute, however generic, here.

villers-station-cem.jpgmap_web_mapquest.gif

Tapestry, coping and shame


Last Sunday afternoon, Thanksgiving weekend, I was out for a walk in Perth taking some of the photographs I collected over my five days there.  I was also slipping away from the family in order to listen to a radio program which included brief comments I had made by phone as invited by the producers.

CBC Radio’s Tapestry was airing the second part of a series called Coping and at about 15:49 into the program I am heard introducing myself, then speaking of how my bipolar II diagnosis was an “A ha!” moment for me in the context of living as a survivor of childhood trauma, addiction recovery, and living with HIV/AIDS since 1989.

I also said that the bipolar II diagnosis has allowed me “to have a little more compassion for myself” and, in turn, with others with mental health issues with whom I can more easily and comfortably empathize and suppress my self-criticism.

“I live on,” I said, “and live on in curiosity”.

The reason I felt I had to head off to my favourite café, rather than invite my family to listen to the program with me, is that they are not all up-to-speed on my bipolar II diagnosis nor, in some cases, the sexual abuse.  In the case of my mother, I have withheld these because I have judged that she has had more than enough to deal with.  Whether it is worth the secrecy may be another matter entirely.

Fast forward to my weekly group therapy yesterday, which I had missed due to travel last week and being ill the week before.  It followed on the heels of my check-in with my psychiatrist in the same hospital during which I confessed that, due to financial problems over the past little while, I had been unable to pay my quarterly prescription co-pay of about $100 and had, therefore tapered myself off my medications – re-starting at the end of September after more than a month when my finances were back in limited order.

He urged me to be in touch with him should I ever run into trouble again (I had even bluffed my way through an appointment with him during the crisis) and to keep in mind that relapses could be very serious.

Off to group therapy I went where I broke down crying as I reviewed the past couple of months and spoke of the shame I felt in being short of money.  It was of my own doing, I judge, because I had sought sexual release time and time again with the click of my TV remote at $9.99 plus tax per viewing.  (More shame.)  The financing – no worries until the bill arrives – was as seductive as any of the pay-per-view characters.  There were equal amounts of shame in having dug myself into a financial hole, putting my health at serious risk, and the mental condition which I dared not speak of with my loved ones – despite all of their support for me in every other area of my life which many other families might not be able to tolerate.

I did manage to tell my family, as we packed down a splendid turkey dinner, that I had lost ten pounds in the past little while.  What went left unsaid was how much less I had been eating and why.

What could I have done differently?

Certainly I could have flagged the financial problem with not only my psychiatrist but also my doctor and pharmacist.  Heaven and earth might have been moved to make sure I had my meds.  Instead I chose, in shame, to deal with it myself – the same faulty self-reliance that got me through the rough years as a kid.

I could have told friends what was going on.  It would not have been too tough to borrow a hundred bucks for my meds.

No doubt I could spend time, honestly, openly and,  more constructively, out of isolation with friends.

I’m sure that Craig would be proud of his United Church of Canada electing a gay man as Moderator


The criteria my brother Craig set out for the United Theological College award in his name reads in part:

To recognize the powerful and passionate ministries of gay and lesbian persons and to honour one whose life’s work has been particularly distinguished in its clear commitment to such central Gospel values as personal courage and integrity, life-affirming faith and spirituality, an unswerving commitment to social justice, a sustainable environment and solidarity with those who are poor or marginalized.

Now I’m not making an early pitch for next year’s award but I can imagine that Craig would be pleased and proud of the United Church General Council’s choice of openly gay Rev. Dr. Gary Paterson as Moderator for the next three years. In fact, he was one of three openly gay candidates in a record field of fifteen nominees.

Craig was not completely open with his sexuality right up until he took his early retirement, at which time, it turned out, his parishioners were far more concerned for his health and well-being than his sexual orientation. He had been able to come out to many people in his congregation over the years when he thought it would be helpful but I know he took something of an envious delight in me being as open as I have been for so long.

The United Church of Canada broke new ground, and cracked open parched, dusty ground, when in 1988 – twenty-four years ago – its General Council decided, by no means unanimously, that every Christian, regardless of sexual orientation, was not only welcome in the church but was “eligible to be considered for ordered ministry.”

Craig was at that assembly in 1988, speaking of sexual orientation in the third person, feeling the slings and arrows of the often acrimonious debate. In light of all the love which surrounded us when he died, and the wonderful memories of Craig his parishioners shared, it is still so painful to imagine what that meeting in Victoria must have been like for him and other lgbt colleagues.

That was then. This is now. Although my direct relationship with the United Church has never been the same since Craig’s death, I applaud the decision-makers who re-affirmed the church’s 1988 decision in such a big way.