AIDS is still here but so am I!


Submitted to Aless.ca today

I find the anticipation, whatever the outcome, of World AIDS Day quietly overwhelming.

“Not much,” I replied to a friend asking what plans I had last night.  I might as  well have had dental freezing in my brain, such was the unacknowledged numbness.

When I think of World AIDS Day I think of, as a blur, the forty or, I’m sure, more friends and fellow travelers who died of AIDS long before, and some since, the chance to survive with complex medications existed.

It is such a blur that I do not wish to single any one out.

Nearly six years ago, a blogger friend in California reminded me of something I do not mention much about my family, and then it’s usually “someone else in whose footsteps I was following”. I always respected my brother’s own, non-blog, ways of carrying himself in public.

Let’s just say there was this guy I write about more than anyone else (me) with an older brother who, like me, is gay and has been living with HIV/AIDS since the 1980s. Both are openly loved and accepted by family, close and extended, and many friends.

When I “came out” to my parents in 1981 it was not a complete surprise when they revealed that my older brother had also come out to them a few years earlier. One of the reasons I had not been in on that, however, was the fact that I – at that time – was test-driving ways of suppressing my homosexuality, to the point where I joined a right-of-Baptist, left-of-Pentecostal church for awhile. The test-drive, as evidenced in my subsequent writings, ended in a high-speed crash into a spiritual wall. My internal emotional injuries were very serious.

After I came out to our parents my brother wrote me a letter (in those days before email and long before Facebook), another letter I wish I had kept. In addition to lending support and understanding, I recall the note offering some wise advice about the difficulties inherent in living out one’s sexual orientation in a gay ‘community’ which, at times, can seem like a very cruel world. (Rufus Wainwright, a favourite, profoundly captures this in his song “Poses”.)

To say that Craig and I became closer, after I had withdrawn from my ‘doth-protest-too-much’ stance against homosexuality, would be an understatement. However, to this day, I regret any actions that separated us during those times. The relationship thankfully evolved to being much more comfortable over the years.

I learned in confidence, in the mid 1980s, that Craig had been infected with HIV – news which Craig later shared with other family members.

With all of that background, I vividly recall having a picnic lunch, a few years later, with my Mom and Dad during a brief vacation I had taken deliberately to disclose my HIV-positive status to them.

This being 1990, my medicine bag only had AZT in it and yet it seemed like the heaviest thing in my back-pack that day. Knowing that I would need to take that capsule before the picnic party had returned to Mom and Dad’s home I now only recall these key moments of the conversation.

 Kenn: “When Craig told you he was HIV-positive the best information he had, at that time, was that I was negative.”

Mom (sighing deeply): “Oh, don’t tell me…”

 

That was in the summer of 1990, a little more than a year after routine blood-work had first shown tell-all “counts” in reverse, certainly abnormal, proportions. (Those blood samples, from the spring of 1989, were later tested specifically for HIV and were found to be positive.)

That picnic seems like a lifetime ago. My parents and siblings gradually integrated this overwhelming information and were very accepting as I shared my story publicly, even via television and newspaper media. (One magazine article, originally meant as a simple tribute to my parents’ longstanding involvement in their community, included the traumatic events when my mother barely survived an attack of necrotising fasciitis – ‘flesh-eating disease’ – and how my father suffered a major heart attack as Mom was in the midst of her recuperation at home following more than two months of critical care hospitalization.)

In layer-upon-layer of irony Craig fell in April of 2007 and, tragically, hit his head, suffering irreversible brain damage.  He died a few weeks later just days before what would have been his fifty-second birthday.  Mourners shook our heads as we thought about Craig having survived twenty or more years of HIV/AIDS, quintuple bypass surgery just a year before, only to have a freak fall end his life so horribly.

I still carry Craig with me and, while we shared an AIDS diagnosis as well as our sexual orientation, he was definitely his own man and I miss him as much today as any other.

Toronto AIDS Memorial, 519 Church Street Community Centre


With one eye on the wider world, marking thirty years of AIDS (and hopes that we may be seeing the beginning of the end), my other eye is on memories of friends lost here in Toronto (and hopes that many more may yet survive).

Ambulance chasers aside, World AIDS Day provides an important focus


By “ambulance chasers” I mean media who wish they could report on the illness, the meds, a cure and some drama all in about 52 seconds.  And they try.

This year, rather than run to the annual UNAIDS report on HIV prevalence (good news and bad news as usual), I invested some emotional energy in assembling the stories posted here earlier today.  I’m definitely going to repeat the exercise and maybe, if I ask earlier, I’ll get a greater response.  Not that I’m disappointed, far from it.  Frankly, with most submissions arriving within the last 48 hours (hardly a surprise), it was all I could do to get them out by a decent hour this morning.

After a brief nap, and an even shorter appointment with my dermatologist, I walked over to the AIDS Memorial for some pictures – touchstones, really, of seeing another World AIDS Day in.  I hope I never take years for granted.

A very light snow-rain mix gave a tear-like sheen to some of the photos.  I wandered through again briefly at dusk as hundreds of red lights gave life to an AIDS awareness ribbon at the front of the park.

Earlier I got in a little closer to the names on the monument than I usually do in photos.  It was beautiful to see some fresh flowers, some not so fresh and I was momentarily overcome as, with the day’s “work” complete, I again saw how wide a swath the illness has cut through my circles of friends.  The hundreds and hundreds of names on the plaques from the early-to- mid-nineties here  zoomed my emotional focus out from the very painful, personal losses I have experienced to memories of how doctor’s visits, hospital stays, wakes and funerals overlapped each other at a dizzying pace sometimes.  A deep breath in and I was filled with the satisfaction, with raw emotion certainly, of the survivor that I am (among many), mixed with the profound loss of memories treasured and memories that would now not come into being.

I’m really tired.  Perhaps I’ll mix in some more reflections in this space tomorrow.

Specifically (what would seem like too much for such a day as this, but only added greatness to it) – wrapping up with a small, intimate number of people a short journey together through a bereavement group.

For now, though, more of today’s pictures.

Celebs with $900 sunglasses and Mama’s medicine chest in their undies can be silent today if they want, not me!


I’m all for vaccuous celebrities shutting their yaps today, especially as a fundraiser, but if I don’t tweet or “poke” or “like” it won’t be because I’ve gone silent for World AIDS Day. How many years passed before those in power, like Reagan for example, even mentioned AIDS? And Canada continues to sell out on pacts made for cheap meds in poor countries. Don’t be silent without at least listening!

World AIDS Day 2010 – Stories – 5 – “World AIDS Day 2010″ by Aless Piper


Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

Tony Kushner wrote in the Playwright’s Notes for Act 2 of Angels in America – Perestroika that Harold Bloom translated the Hebrew word for “blessing” as “more life”.

“More life” repeats throughout the second half of the play. Later, Prior Walter says to the Angel of America, “But still. Still. Bless me anyway I want more life.”

I remember the first time I read these words in grade 12 while trying to write my own script for a movie in Film & Video Production. They made such an impact on me that I read them over and over again and they wound up being a scene in my movie.

The play ends with these words, also spoken by Prior Walter, “Bye now. You are fabulous creatures, each and every one. And I bless you: more life. The great work begins.”

On World AIDS Day, this more than anything else, is what I wish for you.

This past June marked 29 years since five men in Los Angeles were diagnosed with pneumocystis carinii pneumonia (PCP), marking the beginning of the AIDS epidemic. To date no cure has been found, and 25 million people worldwide have died.

In Canada, there were an estimated 58,000 people living with HIV/AIDS at the end of 2005. Of these, around 30% were unaware of their infection, a chilling fact that should drive home the importance, for everyone, of getting tested, and knowing your status.

I dream of a world free from AIDS, where Edward, and so many others are guaranteed to live well into old age barring hereditary and environmental factors. I dream of a world where instead of reading that thousands of people worldwide are diagnosed with HIV every day, we celebrate the victory of no new infections (or single digit), and a cure.

When Paul Martin was running for Prime Minister opposite Stephen Harper, the Liberals had a commercial that I only saw once, right before the election. I thought it was best commercial they or any party had come up with. Paul Martin was in a room and he encouraged voters to vote for their Canada. The outcome of the election was disappointing to say the least, I was a Liberal, through and through even though, even then I tended to fall to the left of the Liberal party’s politics. But that commercial always stuck with me. What would you like your world to look like?

I spent all of last weekend reading Kenn’s blog instead of writing and something that seemed to come up repeatedly (or I just read the same thing repeatedly, either way!) is that AIDS is not a single issue journey and it reminded me of a very heated debate on MySpace about how when AIDS is cured the factors that allowed AIDS to happen (apathy, poverty, fear, ignorance, etc) would still be there, a fertile ground from some other disease.

As it stands, so far this week I have posted an article about access to medication in prisons, Uganda’s “kill a gay” bill (Change.org’s words, not mine), and China’s AIDS apathy that boggles my mind. All of these things and so many more allow AIDS to continue spreading unchecked. Today I read on Twitter that 7,000 people worldwide are diagnosed with HIV every single day. A short time later I opened the newspaper to read that AIDS diagnoses among men who sleep with men are climbing back up to rates not seen since the 80’s.

As we remember the lives lost to HIV/AIDS and those living with the disease, we should also be asking ourselves what we can do to change the tide. We can start by being aware, getting tested, being informed and spreading the word.

I would like to leave you with these words from Stephen Spender’s poem, I think continually. They seem especially poignant today, on World AIDS Day.

“Near the snow, near the sun, in the highest fields

See how these names are feted by the waving grass

And by the streamers of white cloud

And whispers of the wind in the listening sky.

The names of those who in their lives fought for life

Who wore at their hearts the fire’s center.

Born of the sun, they travelled a short while towards the sun

And left the vivid air signed with their honor.”

World AIDS Day 2010 – Collected Stories – 4 – The prequel to “My journey with AIDS…and more!” by Kenn Chaplin


These days I still only started to think about trying to get a meal in my stomach once an almost painful hunger came upon me, seemingly out of nowhere, on this occasion at about three in the afternoon.

I had just been to Sunnybrook Hospital where I was part of a clinical trial combining AZT and ddI. (What these letters stand for has never been of much use to me.) The ddI came in packets something like instant oatmeal but was a fine powder which had to be dissolved in water. (Bits of the powder invariably found pockets of my mouth to hide in until the next drink.)

Even after being on AZT for three years, my appetite was often in competition with my fear of “accidents”. I had almost died from a serious bacterial infection a year-and-a-half or so earlier and was, therefore, cautious to the point of negligent when it came to eating. However the hunger won out on this day, even if my choice of meals might have given pause to a dietician.

I was close by a well-loved Canadian chicken and ribs restaurant chain with the unlikely name of Swiss Chalet. (Chocolate and watches, maybe, but chicken and ribs?) Oh well, it had long been a favourite for fast, tasty food with an almost cookie-cutter like predictability. Just the way my not-too-adventurous palate liked it. Besides ‘twas the season for the “Festive Special” when my customary quarter chicken with fries and a roll was supplemented with dressing, cranberry sauce and – the take-away gift – a delicious Toblerone bar.

The attendant at the door seated me in one of those two-person booths across from a foursome of violet-haired women who had thrown their ski jackets and rain coats in a booth of the same size next to them.

It was the sixth observance of World AIDS Day – December 1, 1993 and I was glum. I had been visiting my dear friend Jim who was in deteriorating health (he would die six weeks later) and, while fear of his death was top-of-mind, I wanted to do something to commemorate the loss of so many friends already so I was taking on some calories to go for a walk to a very special park not too far from my apartment.

I took the women friends to be altos, judging by the sub-woofer-quality pitch of their voices. I already knew they belonged to a choir because of their clucking about the sopranos.

“Does it really help to hit such a high note by shouting it?” one asked rhetorically to gales of laughter.

As someone who is equally enthused listening to the conversations of others as I am being engrossed in one of my own, I found myself making mental notes for the great play or novel, semi-autobiographical were I to be asked, rattling around in my cerebral database.

The women gathered themselves up, sharing a laugh over someone I presumed was the choir director, and rustled past me towards the front door. I wasn’t too far behind, such is the efficiency of dining alone in a place where the meats are at all stages of readiness from about 11 to 11 daily. The women scattered at the College subway station, two heading underground, the others going north to College Street itself.

When it came to the next, and most important, errand of the afternoon I couldn’t afford too grand a gesture so, on the way to the AIDS Memorial at the 519 Church Street Community Centre (“the 519”), I bought a large bouquet of wild-flowers which I picked out of a curbside bucket in front of a corner store. A miserable rain-snow mix put a glisten on the cellophane wrapping as I continued up the street.

Walking up the sidewalk, along the side of the 519, and into Cawthra Park, the first few pillars of the memorial loomed into view. I could feel butterflies as I anticipated, and perhaps feared, the feelings that were rising within me.

AIDS had already cut such a wide swath through the gay community and, being as involved as I was with peer support (not directly related to HIV/AIDS), I felt as if I was already ranking the impact of people’s deaths by placing them on an imaginary diagram of inner and outer circles. Yet there were always situations where those rings were intertwined. It was just so pervasive.

I stopped at a pillar to read Michael Lynch’s beautiful poem, noticing for the first time that I was here by myself. The words seemed so familiar, not because I had memorized them, but because I felt as if I had lived them. I tucked a few flowers behind the steel plate on which the poem was engraved and continued up the path. The first names I recognized, friends, came into view. I pulled out several more stems and leaned against the pillar, tears of the day, of years, beginning to flow.

Then I realized that I was no longer alone. What looked like the light of a miner’s helmet was bobbing up the pathway towards me, two voices speaking quietly. As they reached me I recognized them as a TV crew, the familiar CBC logo on a tattered decal stuck on the man’s camera.

The woman I recognized as the reporter, seen both on local and national newscasts.

“I hope we’re not disturbing you,” she said softly, “but we were wondering if we could take some shots of you and then talk for a few moments after.”

“Sure, I guess,” I said, feeling the least telegenic that I ever had.

I continued up the path to the next pillar, again scanning the names until I saw a few more that I knew, placing flowers behind the silver-blue engravings. My reporter friends stayed back several steps, getting a variety of shots I presumed, so I kept to my task – the finding of a name sometimes feeling like a forgotten memory being jacked open, leading me to more names I knew I would locate on the same year’s plate.

The tears, and accompanying sniffles, were fairly steady now as dusk was falling, an unkind wind reminding me of the fast-approaching winter. The reporter and her cameraman were moving closer, the camera on his shoulder, light on.

“Show time,” I thought.

I placed my last flower but knew I had not seen the last name that I wanted to pay homage to, and I began to cry more noticeably.

The video clip of me quivering that made it to air that evening, between the reporter’s voice-over and the filler camera shots, was, “I’ve run out of flowers. I don’t have enough flowers. There are too many names!”

“You’ve lost a lot of people,” the reporter said, “Do you know how many?”

“I stopped counting at thirty,” I replied, sniffling, “and I haven’t tried to count again.”

“And you’ve run out of flowers,” she said, rather mournfully as fresh tears filled my eyes.

I don’t remember much else. It was pitch black by the time I walked home, wondering what would end up on the air. I called my mother, telling her that she might see me, if not over the supper hour, on the late national news. My voice did not betray the exhaustion I was feeling from having done quite a lot of crying.

Following a report on international observations of the day, which I remember included the unrolling of the giant likeness of a condom, by AIDS activists, down the Eiffel Tower then-local CBC news anchor Bill Cameron introduced the report which included me. Despite my uneasiness with my raw emotions I was quite satisfied with the report.

What remains with me to this day, particularly nice since I came to know Bill only vicariously through his sister as he was dying of cancer, was his reaction coming back on camera from the video item. A fist cupping his chin, he leaned back in his chair, and paused, the silence saying (to me anyway), “Wow”. Since it was me projecting that onto him I took it as a good “Wow”.

Understandably wound up, I would say, I watched the rest of the newscast and then decided to change direction a little by putting put a few Christmas decorations. Slapping a holiday music cassette into the stereo until I was satisfied with the dressing up of the plants in my living room window, I decided to sit down and begin writing a year-end letter to friends and family. Most of all, though, it was a letter for Jim because I wasn’t sure he would be here the next year.

That letter, and those from the next several years, eventually became the first entries to this blog. It began:

It’s dusk. My indoor garden is laced with tiny Christmas lights, some climbing and some right on the floor. Candles are lit here and there, mostly there, while I peck away at this tabletop word processor. Tiger and Blue are snuggling in my mother’s doll-crib, one of The Bay’s loose-eyed 1993 “Charity Bears” is holding a picture of yours truly at the AIDS Memorial, from the Globe & Mail’s front page last summer, and Barbra Streisand’s Christmas album – which I like to call “Babs Does Bethlehem” – is playing in the background. Life is good in this moment.

World AIDS Day 2010 – Stories – 3 – “Kim and Alex” by JPK


Each writer in this series has generously given me permission to post their work. The views and experiences shared are their own. Where applicable, links will also be provided at the end of the piece.

The best thing that I can say about Kim at this point is that she blessed the world with her son Alex. He is a beautiful, talented and loving little boy of 11. All those that know him are enriched. All those that know him also know that he will be forever dealing with the legacy of his mother’s illnesses.

Thankfully he was born HIV negative. Kim was HIV+. I do give her credit for complying with the medical advice to receive in vitro treatment for Alex and to have him by cesarean section. She did however use drugs when she was pregnant with him and it is likely he was conceived while Kim was using crack. Alex must pay for that indulgence with a learning disability and possibly many other effects of his mother’s drug abuse as of yet undiagnosed. Are the drug addiction and being HIV + related? Absolutely! The latter was contracted through sharing needles or unsafe sex while high.

And now she is gone. An overdose. It is undetermined if it was intentional or accidental. Regardless, the rest of us are here trying desperately to support Alex, to help him grow and to save him from his mother’s legacy.

I am angry and I write through a veil of tears for all concerned.