Any intelligent fool can make things bigger and more complex... It takes a touch of genius - and a lot of courage to move in the opposite direction. 

Albert Einstein 

I’ve heard it said that HIV has become more complicated, that the issues surrounding HIV have become increasingly complex. Given that therapies have become simplified (one or two pills a day instead of eight or nine), I wonder whether the notion of complexity is another way the industry has manufactured crises. 

As I’ve written in previous posts, I think the whole “movement” has become overly professional. Part of that professionalism is the jargon and twisted logic that supports professionalism – not people. Programs and services are centered increasingly around the educational level of the people providing the service – most of whom have degrees in one thing or another. But a degree and all the best intentions in the world don’t respond to the human condition: a condition that has been around for millennia. 

And that’s where “complexity” has been created. It is a manufactured condition based more on text books and Universities and endless, tiresome research than on simply existing. 

The human condition of HIV hasn’t changed one iota since the virus was discovered. In fact, the human condition has nothing at all to do with HIV and everything to do with life. As people living with HIV, we certainly experience the world through different eyes and different sensibilities, but we are not separate from the rest of humanity. 

We love, we hate, we are capable of brilliance and we can be assholes. We take our medications and sometimes we forget. We drink too much, smoke too much, care too much or too little; we are vain and we are self-conscious. We feel hurt and we can hurt others. People living with HIV are as kaleidoscopic as the rest of the sorry asses on the planet, and in that there is nothing complex. 

Many years ago I read “Manufacturing Victims” by Tana Dineen. A psychologist, she talks about how victims are created where no victim exists. This clever invention supports the industry, not the person as a whole and wholly inscrutable being. She mentions AIDS in that book and talks about how people with AIDS are themselves caught up in the victim creation myth. I remember people in the late 1980s reading Louise Hay (a woman I loathe), who insisted that you could heal any ailment as long as you believed hard enough – and purchased her many products. One many I knew became darkly depressed, because he wasn’t getting better; he continued to decline in health and he blamed himself, because he didn’t believe enough. 

Thank you, Louise for fucking with the minds of beautiful people. 

Dineen also talks about how conditions that weren’t conditions before are suddenly conditions now. Part of the AIDS industry has done this as well. While there are complications from illness and medications there are also conditions that are conveniently created to support both the NGO industry and the pharmaceutical companies and health authorities. Some may exist but others are simply another reason to prescribe a pill (generally a new pill). The DSM will have to add more axes to accommodate all the newly ill people. And there seems no end to the possibilities. 

And while the industry has manufactured a variety of need, we (or many of us) have equally bought into the invented brave new world. I’ve heard street-involved people call themselves “marginalized” – a term used by the workers, not the general population. I’ve said that I don’t know any marginalized people: they all live on the page with me. But when we wear our victimhood as a badge the industry has inculcated us and, like some god, created us in its own image. 

We can reject victimhood and replace it with gloriously fallible human-ness. We can blindly wander through life like everyone else, trusting that somewhere over the rainbow, the skies are a little bluer and dreams really do come true. We can be depressed and pull ourselves out of depression. We can love who we love and do our best to overcome ignorance. We can put stigma in its place and teach the world about caring and consideration. 

Or then again, as my favourite bumper sticker reads, “I used to care, but now I take a pill for that…”

“I am the Ghost of Christmas Past.” 

“Long Past?” inquired Scrooge: observant of its dwarfish stature.

 “No. Your past.”…

…“These are but shadows of the things that have been,' said the Ghost. “They have no consciousness of us.”

The jocund travellers came on; and as they came, Scrooge knew and named them every one. Why was he rejoiced beyond all bounds to see them? Why did his cold eye glisten, and his heart leap up as they went past? Why was he filled with gladness when he heard them give each other Merry Christmas, as they parted at cross-roads and bye-ways, for their several homes? What was merry Christmas to Scrooge? Out upon merry Christmas! What good had it ever done to him?

“The school is not quite deserted,' said the Ghost. “A solitary child, neglected by his friends, is left there still.”

 Scrooge said he knew it. And he sobbed.

Charles Dickens, A Christmas Carol

I had a dream the other night...

Everything in the dream was sepia tinted like an old photograph. We were at a tomb. I don‘t know who “we” were but there was more than just me. We lifted the heavy stone cover of the tomb and it was then that I noticed faces looking at me from below. I looked down and through a window grate I saw the faces of young men. They were the ghosts of soldiers: expressionless and staring. All I said to them was, “We can tell your stories.”

Then I woke up.

In the morning, the simple symbolism was clear to me. So many have passed, so many brilliant young men and women lost to the battle against HIV.

I heard of survivor’s guilt, but I don’t think I’ve experienced it. Having lost my soul mate – a lovely straight man, in the 1980s to a car accident, I believe that we’re here on the earth (this time around) until we’re finished. Then we leave. And I believe what the ancients believed – that we choose our experiences in this life, because that’s what our souls decided we needed to learn. 

But that does not mean that lives are empty and hollow. We are guided by all our experiences, moving from one to the next, each past moment replaced by the next past moment. And we all of us have a most amazing story to tell. Each one of us has the humdrum of everyday living, but in each experience there is so much more – our pasts and our presents shape who we are in the world and how we respond to it and interact with it. When one of us dies, in a way we all pass into the forgetfulness of night. And there is in that the risk that the story of whom we are and all that we have done can become as faded as an old picture.

I have old photo albums from my mother and grandmother – I’m related in some way to the people in the photos, but I don’t know anything about them. To me they are faces and men in military uniforms, and women at weddings, but they are not stories. I have no history of them in my mind – no connection. Some have names written on the back, and now, as my own memory fades over time, I understand why they did that: to preserve who these people were – to be reminded of the funny stories, the weddings, the wars…

We only have our story to this particular moment in time. But it is the past, for good or bad, right or wrong, that has brought each of us to this point. What we learned – the lessons that taught us to love and rejoice, the lessons that brought us pain and suffering: all these are the shadows and light in the portrait that is who we are as individuals.

So this is what we can do: as long as we have memories of those who have passed before us, we can tell those stories – the funny, the mundane and the lovely. And the more we ask to hear from others and, however we do it, record the stories of those we did not know, the larger our collection of biographies becomes. The more intimately connected we become to the past: to those men and women and children who died from AIDS, in a pandemic that terrifies people still. And it is a pandemic that also holds little significance to the majority of people. We are nothing of much importance to them…

But like the Ghost of Christmas Past, we can show the world the shadows of the people who have been, and paint our own portraits as well. We can hold the mirror of their lives up for all to see and we can proclaim their importance and ours. No longer will the sepia-tinted, voiceless young faces stare blankly from the basement window grate – they will become alive again through us and our remembering.

We are the only ones left to tell their tale. We can lift the lid to the tomb and we can breathe life into the stories of those who struggled so long before us and have helped to bring us to the place we are today.

We only have now…

“The more you have

The more you have to protect...”

Lao Tsu

The Tao Te Ching 

I remember years ago in the earlier days of the AIDS movement we had nothing; at least compared to today we had comparably little with which to work. The new AIDS is different than the old AIDS – in some ways that’s not a bad thing, in other ways it’s tragic. But where there was a movement there is now an industry and what’s lost in that industry is the very heart and soul of the best of what was. 

All HIV groups started the same way – around a kitchen table in response to a need that was not being met. During the 1980s, most governments didn’t want to even mention the word “AIDS” let alone talk about safe sex or gay men. In response to that silence, groups formed to care for those who were dying: and those men and women were everywhere. The number of funerals was staggering; the loss of beautiful, vibrant people was agonizing. 

It really was a plague. A plague punctuated by hatred, stigma, silence and fear. 

And so the groups formed. Tiny pockets of gay men and lesbians and others who knew that something had to be done to address the epidemic. In those days, we had small offices with computers with black and orange monitors that we’d start up and wander away to make coffee, raise children or get a degree before they were ready to use. There was no email, no smart phones, no Internet. 

But what we did have in abundance was imagination. 

When there’s nothing there’s room to make something. In the absence of money and with scant resources, we made up posters by hand, photocopied them and put them on every notice board we could find. Most groups had only a couple of staff people and a lot of volunteers – the volunteers were the centre of the place. They were the Helpline people, the counselors, the caregivers and the office staff. 

How dim that world is now. How distant and indistinct it is. 

As groups grew, they gained knowledge and honed their craft. When the money started to become available, groups could breathe – they hired staff and increased resources, but with that change new things happened. 

More and more professionals were hired to fill positions. After all, it’s much better to have a professional counselor than a volunteer. It’s better to have a well-seasoned office manager than someone with ingenuity and smarts. And other than those newer small agencies and rural groups, the larger groups know better, think better and deliver more. And yet, curiously, sometimes we need a mouse and not a lion. 

The creeping professionalism altered the landscape. Volunteers, regular ordinary people, were less attractive. Accreditation became the pinnacle of that for which we strove and we needed professionals to gain that accreditation. Being legitimate in the eyes of researchers, health authorities and governments, that was more important than being creative and off the wall and inventive. 

Way back in the dark days, we relied on each other. Now we rely on branding and marketing strategies and communications directors and the calculated speech of politics. We used to rock boats, but now we would never dare to bite the hand that feeds us – even when that’s our role in society. 

In some ways, the more we’ve gained the more we’ve lost. And as the Tao Te Ching says the more we have the more we have to protect. And we will protect it to within an inch of our lives, because it’s far too important to lose. In many ways, we have forgotten how to be creative on our own – except when a brave soul or two steps up and simply does something. But those instances are increasingly rare. 

The industry has taken all the water from the “grass roots” movement and the roots are withered and dead. If you brought a person from the 1980s into the present, they wouldn’t recognise HIV groups today; they wouldn’t understand the complex jargon and terminology that separates real people from the work. They wouldn’t understand the need to spend money on glossy publications and social workers and massive office spaces with open area concepts.  

And I think they would weep.

“O, the rising of the sun, and the running of the deer,

The playing of the merry organ, sweet singing in the choir!”

The Holly and the Ivy (traditional carol) 

One of my closer friends lost a friend to cancer on Halloween morning. As I was walking to the store that morning I started to think “what’s to celebrate?” And I quickly realized the answer. 

Everything!

Confronted by death, people with HIV have an intimate understanding of the brief period we are granted on the earth. Many don’t seem to comprehend how short a span of days we are here. Today, as I write this, I enter my 52nd year, and I was treated to a wonderful lunch (a burger and fries mind you, but it was a treat).  I celebrate this day by doing a scant bit of work, reading well-wishes on Facebook, drinking some nice ale at lunch and lounging around with the cat in the bright Autumn sunlight and chill afternoon. 

We don’t think about celebrating every moment. We may read affirmations alluding to this, but don’t really embrace the concept of celebration and gratitude. And yet there is so much in our lives that we can celebrate – our small and large successes, the rising of the sun, the people in our lives, the gifts and talents we are born with or even the simple taste of an apple. 

In the AIDS world, we may spend time thinking about illness, loss, treatments and doctors and completely overlook the wonders that are all around us. The universe is a magnificent place. What is there not to celebrate? We have the medications – celebrate that. We have increased health – celebrate that! 

When a person has passed, we celebrate their lives at memorial services, thinking about the funny stories and jokes and liveliness of the person. Why do we not celebrate with that person while they are still with us? Why do we not celebrate our own lives while we are still living? HIV aside, every day we contribute our “somethingness” to the vibrancy of the planet, whether we are living in a mansion or on the street, whether we are alone in our rooms or out with the throngs in the street. Inasmuch as there is tragedy there is a glorious opportunity to see the kaleidoscope that is all around us every day. We participate in the unfolding of the Universe in our every thought and action; is there a reason that we cannot celebrate being a portion of that massive undertaking? 

Each holiday we have is a chance to reaffirm the value of not only those we love, but of ourselves as well. And if we can do that we can start to participate rather than watch what goes on around us. Things in that state do not happen to us, we create our existence actively, not passively. 

There’s an old Zen story about a man who was hanging by a root on the edge of a cliff. Below him were jagged rocks; above him a tiger ready to kill him. Just then he noticed wild strawberries growing out of the rock face. As the root was beginning to pull loose, he grabbed a strawberry and ate it. 

It was the sweetest strawberry he had ever tasted.

“…’I’ll be judge, I’ll be jury’ said cunning old Fury,

‘I’ll try the whole cause and condemn you to death.’”

Lewis Carroll, Alice in Wonderland 

The recent Supreme Court of Canada decision seems to have everyone reeling. On the one hand, they made a decision, which is a good thing. On the other hand, the decision has too many grey areas and we’re not all comfortable with that. 

In talking with a sexual partner who is aware of my status, he supported the view that I am, albeit unfortunately, responsible to protect him from me. I pointed out, yet again, that we must all of us assume that our sexual partners have something we don’t want to get and that we all have something we don’t want to transmit. In my mind this includes all sexually transmitted infections, not just HIV. We used to say that in the 1980s, but I don’t hear it much anymore. 

A friend on Facebook, told me she had posted a comment on an editorial in the Globe & Mail. I started reading the comments and quickly had to stop. The vitriol spewed from the readers was more than I could handle and I realized that in the court of public opinion, we are still considered the vectors of disease and I suspect many would love to see us all sent to the leper island – thereby keeping safe the innocent lambs who refuse to take responsibility for their personal behavioural choices. 

I’m torn between the agency-based argument that we’ve been shuffled a step backward and my own internal view that in fact I am responsible for keeping HIV away from my sexual partners. I am responsible – but that does not negate the responsibility of others. 

Perhaps there’s a little of the Nanny State living in this twisted view. We must all be protected from that which might harm us: we are not responsible, others are. But that holds as well for those of us living with HIV. We wish to remain blameless and innocent in the potential transmission of the virus. And we are not. And neither are others. 

Most people don’t understand what safer sex is. Perhaps we dropped the ball on that one after the meds improved. We saw treatment as a panacea for education. We started to get our lives back and the AIDS industry shifted it’s focus away from sex and toward needles. Education about safer sex is still out there, but with health authorities squarely moving toward “harm reduction” (which now means needle exchange), there is a new scramble to figure out how we get the safer sex message out to people. The stigma campaigns are a good start, but they reach a limited audience, often preach to the converted and don’t talk about personal responsibility. Instead, they harp on the message of “why do you hate us?” 

Until we go back to the beginning and start over with the relentless messages about condom use, personal responsibility and safety there will be no change in public awareness of how HIV is and is not transmitted, and we can talk about undetectable viral loads until we’re blue in the face. 

The early days of AIDS and the “gay plague” are with us still. The blame game continues to rage on both sides and Supreme Court or not, we will never be able to legislate common sense. 

Follow the path of the unsafe, independent thinker. Expose your ideas to the dangers of controversy. Speak your mind and fear less the label of 'crackpot' than the stigma of conformity. And on issues that seem important to you, stand up and be counted at any cost.

Chauncey Depew 

"Present fears are less than horrible imaginings."

William Shakespeare Macbeth 

This will rile a few people. We are neither immune from stigma nor are we the victims of it. The fear and loathing of others is not my internalized fear. My internalized fear is what keeps me from uttering the words “I’m HIV positive” to a potential sex partner – until we’re going to “do it”. My internalized fear of what others think is what allows me to live in shame of my sero-status. I can blame myself and be miserable. 

Inasmuch as Depew is talking about ideas, I think there is space here to talk about HIV and how we are, or are not, open about our status. In the early days of gay liberation, gay men and lesbians were stigmatized – clubs were raided and people were arrested. Did that stigmatization stop them from opening their mouths and railing against the inequity? 

No. 

And so here we are: HIV-positive and often fearful and silent. I wonder sometimes if we safely hide behind the wall of “stigma”. Stigma is a buzz word in the lexicon of well-meaning social workers and others in the AIDS industry and we’ve latched onto it as a community. We surround ourselves with stigma like a comfy blanket and use it to remain hidden; blending into the bland and worn wood panelling of society. 

I think that Shakespeare has it right. He talks about how our fears, our present fears, are really less frightening than what we create in our imaginations. This is at least accurate in my personal life: I’m fully capable of creating an imaginary apocalyptic world of devastation where none exists. 

Are we labelled? Yes. Are we loathed and rejected by some? Yes. Do we turn that on ourselves and see our “infection” as a thing that disgusts even us at our core? Yes. We are “dirty”, “unclean” and perhaps, as in the caste system “untouchable”. And none of that is true. It’s a fabrication, a story within which we have decided to dwell. 

Stigma comes from a Greek word meaning “tattoo”. I wonder if we sometimes see the scourge of HIV as the mark of Cain – a big blotch etched on our foreheads for the entire world to see. We may have no outward marks or blemishes and yet we are certain that somehow everyone knows. 

I’ve decided to be out about my status for many years now. This little blog has a readership that is supportive of people living with HIV. But in my own community, I’ve done interviews and had my picture published as a gay man living with HIV. Reactions have mostly been supportive, although I’ve had to do a fair amount of education with people about what my experience means to me. Hopefully, I can transform the puppy dog looks into smiles when I display a sense of humour about living with HIV and my plans to be a cranky old man pushing his way to the front of the line at the bus stop. Hopefully, I can be a Sacred Clown, and like the activists who came before me, open the eyes of those that are blind to life and show them a new way to look at the world. Hopefully… 

Many will disagree with me, but I believe that the more we say the word “stigma”, the more we encourage stigmatization and the more we engage internalized stigma. The longer we hide in the shadows and remain fearful the longer society will continue to be afraid of us. The Supreme Court and those people who decide to put themselves at risk for contracting HIV (or any other STI) will blame us for their own personal sexual and substance using decisions. We will continue to be viewed as the vectors of disease, no matter how safe we make our partners and no matter how well-crafted our arguments are about personal responsibility and the need for safe behaviours. 

But what if…? What if more and more of us emerged from the constricting gloom of HIV and “came out” about our status? What might happen? I think that there would be backlash, just as in the early days of the black or gay rights movements – but I think there would also be a slow and gradual understanding that we are just people living with an illness. Fear and ignorance would dissolve the more we became human and ceased being monsters. 

I’ve decided that I’m not a monster – I’m Michael. What others think becomes less important to me from that frame of mind. That doesn’t rule out that I will be rejected, but I refuse to reject myself. I refuse to buy into the stigma that I’m told by others I’m experiencing. 

In the words of Emil Zola “I am here to live out loud.”