The Patient Experience #3: A Difficult Diagnosis

When I was 23, I had my bloodwork done because people around me, gay men, young, handsome, bright men, were dying and the only indicator of why people were dying at the time was found in the blood.

I went to the Doctor to get my results during my lunch break at work. And I was 23, I was smart, I had a bright future, and my Doctor told me that I had tested positive for AIDS and that I had, at best, two years of life left so make the most of it.

As cruel as it sounds now, it was the right thing to say then because that is what happened THEN.

I went back to work at a customer service call centre for an elite credit card company.

I was shell-shocked.

Yet, the phones kept on ringing, and I kept saying “how can I help you?”.

There is no other way to say it than to say that that was a really fucked up day that really fucked me up.

They say timing is everything and it’s true. Just as I was ready to launch into a bright future, I was shot down.

As a gay men, I never really got into the gay scene. My friends were my friends because we felt a connection and I met them through University, through house parties, through work so I never had a cluster of gay friends. All along, throughout my life, I never fit in.

I was now HIV+ and I knew that meant I would fit in even less.

For me, being gay was about love, so I didn’t look for love in bars or bath houses, I figured it existed, somewhere, but I didn’t turn to the usual suspects. I have had a few very meaningful relationships in my life. Somehow we found each other. And after it’s all said and done, isn’t that what we strive to do, as human beings, to find each other.

Meanwhile, back to the Rock Hudson days, guys that I knew from the gay group at the University of Waterloo were dying. The gay group was called GLOW which always made me laugh. Gay Liberation of Waterloo. The whole gay thing has changed a lot but that’s a different post.

Smart, promising, beautiful 23 year old gay men were dying. I was one of them. They were dying awful deaths and often in awful surroundings. The stories I would hear about the Mother grieving the death of her son, but the Father saying he got what he deserved.

I didn’t die.

I didn’t get what I deserved.

Peace of mind was never an option for me.

I had moved to Vancouver after I graduated from the University of Waterloo and I met new friends; and most of them were gay because an easy way to meet new people is to find out where people that have things in common with you hang out. So I went to gay bars and met people. I made friends. Other times I met someone and had sex. I was 23 and a male. That’s just what we do; if we can — and back then, when you were gay, you could do that very easily. And it was respectful in its own way.

The people that were dying weren’t close to me; they were acquaintances so I felt the loss but it felt weird. I wasn’t profoundly close to the people they were dying; they were people I was familiar with. There was loss, lots of loss, almost everyone I knew who was gay died. I didn’t feel intense grieving, I never did, because I was never that close to anyone. Yet, I was feeling more alone than ever, and more hopeless.

As I write this, I wonder, how much of that has changed. The disease changed. I didn’t. I couldn’t keep up with it. I was still shell-shocked.

I just felt scared.

The person that I was closest to that had AIDS was me and, being a wizard at Mathematics, the theorem would predict that I would die too. Sometime. Soon. And it would be ugly and scary. The scariest part was how devastated my Mom would be.

That was 1987 and I felt that way for a long time.

Because I felt that way, I lived that way. I never made longterm decisions. I got a job with benefits so that if anything happened I wouldn’t be a burden to anyone and then I saved my money and once I’d had enough I would quite my job and travel.

I have traveled the world and seen so many things that it blows my mind sometimes. That’s the good side of facing your mortality, you live life vividly. I guess I am hoping that all this will lead me to a point in my life where I can say “I have no regrets”.

That was my pattern. Work. Travel. Work. Travel. The original equation had DIE in it, but it just didn’t happen. I kept living.

I kept living to die.

Drugs to treat AIDS and turn it into HIV/AIDS began to emerge and they went from salvage therapy to something better.

I can’t say that I consciously made a smart decision, I think my choice just turned out to be lucky.

I didn’t go on the early drugs. The early drugs kept people alive but they are just dying of other things these days. Or they have become disfigured so they isolate and hide.

I stayed healthy.

I looked healthy.

Men were attracted to me. Men rejected me.

I never ever truly succeeded.

I have failed.

I was living to die.

I was living to be rejected.

I was living a life of living to die. By the way, we are all living that life — but I felt it and I lived it profoundly.

I did not think about the future.

I am paying the price for that now.

Fast forward, and that means skipping a whole lots of hit singles, but here I am now.

I survived.

Not too sure why, but I think it had a lot to do with the mind body connection, or maybe I just had a weak strain of the virus. I tend to debunk the latter, because I’ve always had health issues, ever since I was a child, so I don’t tend to get weak strains, I just tend to get sick a lot, or diagnosed as sick a lot.

For some reason, I always got better.

My health that is.

And every time it came at a cost.

I try not to think about all this too much, and try to focus on where I am now. As you probably can tell, I am struggling now, so I get sent it to that loop, am I struggling because of the past or because I am not living the present to the fullest or am I still afraid of the future.

How do I make that all go away?

And then, where do I fit in?

Finally, how do I rediscover hope?

Or maybe, it’s always been here.