"You are old, Father William," the young man said,
"And your hair has become very white;
And yet you incessantly stand on your head—
Do you think, at your age, it is right?"

"In my youth," Father William replied to his son,
"I feared it might injure the brain;
But now that I'm perfectly sure I have none,
Why, I do it again and again." 

Lewis Carroll, Alice in Wonderland 

I play a computer game called “Fishdom”. It’s a matching game with fish tanks, various things you can purchase for the tanks and a timer. As I get closer to the time allotted for the round, the timer starts to make noises alerting me to the fact that time is running out. 

I realized one day that the more I focused on the timer, the less likely I was to successfully complete the round. I got sloppy and careless, missing opportunities and potential matches. I was worried that I’d be timed out and the round would have to be repeated and I made errors in judgment because of that worry. 

Sometimes I think that we live our lives, as people living with HIV, with a timer ever present in the background of our minds. Somewhere here we’ll find that we’re getting too close to the end of the game and the warning bells will go off letting us know that we’ll be leaving shortly. The timer for us can be measured in years, but it can also be measured in CD4 cells and viral loads, in kidney functioning and liver enzymes. Each one of those indicators can inch us closer and closer to the end. 

It was like that in the old days – people did what I call the “T-Cell death spiral”. They’d blank-facedly announce that they lost another 100 T-cells, or that their T-cells were down to 6 or some other indication that they were dying. It was horrible to experience with people: the disappointment and despair as though they had somehow personally failed. 

Now, the medications are marvellous and we live a lot longer, but the timer is ticking away. We may not give it our full attention, but like a mental grandfather clock we are reminded that we are mortal and that we will die. One day there will be a chime and that will be that. 

Of course, we will die. Everybody dies: it’s inevitable. It’s the dying “before our time” that bothers us. We all prefer to think that we will be old men and women and pass quietly in our sleep. We could just as easily be hit by a car or die in a natural catastrophe, but our dreams are more than likely about old age and quilts and a soft rain outside our bedroom window as we drift back into the vast and expansive no-thing-ness. 

The problem is that like the game, if we spend all our time while we’re here focused on the end of the round, we miss the everyday opportunities that surround us. We miss the potential to connect with lovely people and summer days, with snowmen and with daffodils. And if we focus solely on “winning” the round, collecting as many goodies as we can, we again miss the point of being here. 

The point of being here is being here. 

There’s no other purpose to existence other than to exist. Our existence is nothing less than miraculous, and our connection to everything is nothing less than wonderful. It’s not about earning brownie points for heaven, or collecting things or making scads of money. It’s society tells us those things are valuable. Life is about being in connection with people and the world in which we live: we are here to love, laugh and create; and we are here to weep and to mourn. 

We only have one round (that we know about) to this particular game. Whether we leave at 9 months or 90 years makes no matter. We leave when we are finished. 

And in the meantime, there are birds singing in the trees… 

“All animals are equal: but some animals are more equal than others.”

George Orwell, Animal Farm 

At the end of March I attended the Positive Gathering in Vancouver. This event is hosted by Positive Living BC and brings together people living with HIV from across the province. I was struck by the diversity of the more than 100 people in attendance: men, women, straight, gay, young and old; all sharing and discussing the things that are important in our lives as poz folk. 

I wonder about the possibilities for this group. I think in some ways we are at best a social club and at worst a pesky insignificance in the scheme of public health. Health Authorities seem to consistently miss the point that HIV is about more than taking our meds and being “good little patients” – we are whole and complete people and our health and well-being depends on more than simply our viral load and CD4 counts. 

I attended a workshop on depression: standing room only. This speaks to me that we as people living with HIV have a collective concern about mental health – not specifically mental illness, but the anxiety and depression that accompany HIV and the uncertainty of our future. I’ve noticed that many people living with HIV feel isolated (or isolate) and I myself am known to “hermit” – preferring the sanctuary of my home to the risk of being “out there”. And I’m not a bar person, which in Victoria is one of very few social outlets. 

The effects of isolation are lost on public health officials. We can clearly make the argument that there are correlations between mental health and physical health, and yet this argument is specious to a system obsessed with counting things. As Einstein said, “Not everything that can be counted counts; not everything that counts can be counted.” In the scheme of it, we as positive people don’t really count. We are patients, not people regardless of the lovely chatter from researchers and well meaning physicians. 

It’s sad. We underestimate our collective strength. We are consumed with consuming and do not see that we wield more power than we could ever imagine. Several years ago, I facilitated a frightening session at the Canadian AIDS Society HIV Forum. I called it “Fabulous Monsters”. People might think that I’m equating us with Frankenstein but no – a monster is a creature that inspires fear and awe. Fabulous means that we are collectively historic and fabled: we have amazing and potent stories to tell and wisdom to impart. We used to do that with alarming frequency. We used to be political animals but we have become reliant on the voices of the professionals and Executive Directors to speak out on our behalf. And those people are muzzled when it comes to the dreaded “advocacy”, lest their funding be pulled. As HIV+ people we are weak and we are mute for the most part. 

Of course there are those of us that continue to have the passion in our blood to open our big fat mouths and rock boats; and increasingly we’re getting tired of having to do that. When we rail against a system that doesn’t listen because they “know better”, soon we may just throw up our hands and give up. We don’t Act Up much anymore and in the worst cases we are simply toadies to the elite that make decisions for us. 

Events like the Positive Gathering are perfect venues for political action and collective decision making. They could be used to develop strategies to engage our own voiceless community in action and to tell the Health Authorities and governments what we want to see change – we could be the change we want to see and we could move mountains with our strength. We’re smart enough to temper our desires with reality. 

Will that day ever happen? I somehow doubt it. We’re more comfortable posting our rants on Facebook than we at rattling cages. We have our own comfortable pen now and we may never achieve equality because we have lost the momentum we had in the distant past. All people are equal, but some people are more equal than others. And we aren’t those people. 

And the ghosts of the first ones shake their heads and sigh

“There aren’t enough houses to drop on the people who need houses dropped on them.” 

Michael Yoder 

Fag, femboy, sissy, four eyes… I heard them all and more. They were biting words that stung me deep to my core. I was bullied from grade three through grade twelve: nine years of daily harassment that left scars on my psyche and my soul. I was beaten up and chased; I had my ”gaunch” pulled in the locker room; I was turned on by “friends” who had to stop being my friends because I didn’t fit. I never understood the bullying. I was only me – there was nothing I was doing. I was simply different. 

I think that we, as people living with HIV, understand being “different” in a way that helps us empathize with those who are bullied. 

We don’t “fit”. 

I worked for bullies and with bullies – men and women who battered others their own insecurities, but especially “subordinates”. We live in a society that values “strength” over “weakness” – winners are those people who climb to the top over the flailing bodies of those they have crushed beneath their Armani shoes. These are the Donald Trumps and Stephen Harpers of the world that insist on power and control as a means to an end – generally their own self-aggrandisement. 

Pink shirt day is about a response to bullying, but I believe it must be more than that: one day each year does nothing much to address the wrongs that are committed in the school yard or workplace.  When I was at the grocery store on Pink Shirt Day, I was encouraged by the number of workers proudly wearing pink – mostly women but a couple of men. I only hope that those people can carry the pinkness of the action into other areas of their lives. 

When we collectively espouse a concept like non-bullying, we cannot leave it on the back burner once the hype and media attention has subsided. Like the early AIDS movement, we must bash at the stigma and rattle the cages of those who refuse to listen until the tiniest amount of sensibility seeps into their consciousness and things slowly change. And the change is sometimes imperceptible. 

When I was a child and young man, bullying was more direct: there was no social media to use as a tool to denigrate the target. Now, I cannot imagine the level of psychological damage for a youth culture that lives almost exclusively online. Certainly there are still beatings and murders and names and words being used, but the advancement of technology has widened the playing field and made bullying even more abstract. 

I wore pink on Pink Shirt Day. But I am pink on more than one day each year. I only hope that we can become a society where pink is just a colour and not a symbol for a lack common sense, and respect for the dignity of the person. 

The Wicked Witch of the East was the unfortunate casualty of a tornado. An effective, albeit messy way to deal with a bully, but the metaphor is not lost on me. There have been many times I prayed that Dorothy Gale would drop a house on any number of people. But in the long run, I think that I have to change the way I interact with people – being openly gay and openly positive is a start. 

Perhaps that’s the house I have to drop.

“What’s love got to do with it?” 

Tina Turner

Last year I attended the Positive Gathering here in BC and I went to a workshop for gay men about gay sex. Or that’s what it was supposed to be about. Very quickly the discussion turned to intimacy. The men in the room were more interested in developing emotional relationships than just talking about “hot sex”. 

While I’m one of those men more interested in sharing ALL of me (with deference to Billy Holiday here), I think there’s still a divide for many gay men about what exactly sex and relationship are. I came out in 1979 when the divide was clear: you could have sex or you could have a relationship, but you couldn’t have both. Or the “both” you got was muddied with non-monogamous encounters on the side. In the early days of HIV we made the assumption that gay men weren’t interested in dedicated relationships – perhaps that was true, perhaps not, but we talked about safer sex as play, not as a loving expression of intimacy in a relationship. 

Sex is not a minefield: it’s more like a maze. If we’re searching for sex it’s for that perfect guy with the perfect abs and perfect teeth and perfect cock. He doesn’t exist and so the search is ultimately a never ending story – the hunt goes on and on… 

Intimacy isn’t much different. We’re hoping to meet “him” – whoever “he” is. And he must be as perfect as the sexual conquest. He must have the nicest smile, best manners and the same political leanings as I do. He must be handsome and he must be smart. He must be secure and he must be sane. He doesn’t exist either and so the search continues. 

Younger men seem to (and I clearly state “seem” to) have it a little more rounded than my generation. Today I hear about more young men finding boyfriends and settling into relationships rather than engaging in park sex and bath sex. Perhaps they’ve learned that you can be sexual with your partner and enjoy it. My generation didn’t quite get that – but it was the party era: discos and drugs and sex were all a part of the “scene”. Of course young men have the problem of living their lives online – a place that lacks intimacy and closeness, but gives the illusion thereof. 

That’s why I think I found the discussion at the workshop so intriguing. Men my age were finding “just sex” to be less than satisfying: there was a greater longing for intimacy and closeness. I read a quote from a man on the Internet some years back. He wrote “sex without meaning gets old pretty fast”. I think he’s right – and here remains the dichotomy of wanting to be close while being inundated with hookup sites and casual encounters. We purchase ideals where no ideals exist. 

Sex is intimate in and of itself, but when the act is simply a means to orgasm, it’s an empty gesture. You get something, I get something, we spurt and someone goes home. Relationships on the other hand require tending to: they are a lovely garden and you can’t let the weeds get hold or the whole thing is lost. We can find our gardens with each other and we can have sex too. We can choose to be in monogamous or we can choose to be open. But we have to accept that there are many ways to express ourselves intimately and propose the most healthful ways of doing that. We have to be honest about who we are and what we want in our lives and we have to make space for those things to develop. Failing to accomplish that, we fail our true selves. 

While being “sex positive” is a good thing, I think we also need to understand and embrace that “relationship positive” is an equally good and beneficial path.

“Inner beauty is important: but not nearly as important as outer beauty.” 

Ellen Degeneres, Cosmetic Commercial

I recently had a Facebook discussion with a man who has started dating a positive guy. Brave in some ways, given the way we are generally shunned by those who are not poz, but he had issues. The man he’s getting to know has lipoatrophy, facial wasting from meds. He wasn’t sure about introducing his friend to his family, concerned about their reaction. 

I was one of the many poor suckers who were offered D4T back in the wonder drug days and the wasting I experienced was sudden. I didn’t notice a gradual shrinking of the fat in my temples and cheeks – it was simply gone one morning when I looked in the mirror to shave. My self-image was shattered in a million pieces. 

I was ugly. I was a monster. 

I live with the wasting and I don’t like it. I know people who had their wasting fixed, but for the majority of us, finding the 3,000+ dollars is more than we can manage. The pharmas, of course, would simply scoff at the idea that they cover the cost of fixing what their drugs caused, and as a “cosmetic” procedure, health plans (provincial and otherwise) won’t cover it. 

People tell me that I look great. While I smile and say “thank you”, I don’t believe them. I don’t see the face I once knew. I see the face of one of those old “AIDS victims” lying in a hospice bed, waiting for the end. My blood work might be fantastic, but the man I see in the mirror is hideous. 

I envy those poz people who are cherry-cheeked and healthy looking – even overweight. Their chances of meeting someone special are pretty good. My chances (and never mind that I’m 51) are not so marvelous. I think that even within the HIV “community” there is stigma about anyone who “looks sick”. We don’t want to be reminded of illness, we want to see ourselves as kayaking, gym bodied youths, toned, tanned and desirable. For those of us living with lypo, the illusion of desirability is just that – an illusion: and a poor one at that. 

We like to espouse the bullshit about “inner beauty”, but we live in a world that is more in tune with physical perfection. Those of us who don’t “fit” that model are the untouchables – even within our own subculture, the “caring” culture of HIV. 

And vanity is a part of the equation. There are very few pictures of me that I truly like. Again, people use words like “handsome” and “great” and I see “gaunt” and “skeletal”. 

Is this my “stuff”? Absolutely! And each of us only has our own stuff to deal with. But when I experience rejection over and over after I send a face pic to an attractive man on a dating (or even a hook up) site, and I don’t hear back, I know that it’s the wasting, not my personality. When a man does find me attractive I’m often suspicious, or I think he’s blind. More stuff piled on top of more stuff… 

I’ve joked that having lypoatrophy makes Halloween that much easier. It’s a mask I can wear to hide my true feelings – the pain I experience that I am a monster, a cast off in the general and the HIV worlds. 

Until we, in actuality, embrace the inner beauty that we say is so important; until human beings stop placing value on the external, those of us with lypo will never be truly accepted. We will continue to look in the mirror and see what we know to be true: we do not really belong.

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…”