HIV Changes Everything
By Bob Leahy
April 25, 2012
Not everyone knows this but I used to be a banker. I wore a three-piece suit and tie every day, and pored over statistics and reports and numbers and, well just bleh stuff, on the 52nd floor of an ivory (no, stainless-steel and glass clad) tower in the financial district of downtown Toronto. Not corner office, yet, but close to that. I had a fancy title and a lovely view, but my head was down all day, both literally and figuratively, so I seldom looked up to enjoy it.
When I was diagnosed on a late afternoon in September 1993, having slipped out of my office but not my suit to get the news, everything changed. It was traumatic, of course, particularly in those days when you had scant years to live. I didn't want to die and I was an emotional mess. Inside I was in turmoil, outwards it was all about keeping up appearances. That meant telling nobody but my partner, going in to work every day and pretending I was OK. I didn't have Kaposi's Sarcoma but otherwise it was all very Tom Hanks in Philadelphia, at least the first thirty minutes of that flick, before he got fired.
But an uber-stressful job like that takes its toll. For six months I watched my CD4 numbers plummet. I wasn't feeling well and I didn't know what to do. Telling my boss in this bastion of conservatism -- they had no idea that I was gay, even -- didn't seem to be an option. I was stumped. So I just carried on pouring over numbers, like bankers in ivory towers do, meanwhile ignoring my own numbers.
I've told this story many times, but it was actually seeing Philadelphia that sent a major attitude adjustment my way. In the movie, Tom Hanks, bless him, finally stood up to be counted -- and so did I. Summoning up strength one day, I went to the Bank's health unit, told them that I had been diagnosed six months ago and, despite appearances, was drowning in worry. And the universe didn't stop; rather it went in to high gear. "We'll take care of anything. You don't have to go back to work. We can tell your boss the reason, or not, it's your choice. Do you need support? If you want to talk to a psychiatrist, we can arrange that. We have short term disability, you should take that and then we can talk long term disability options."
The process was all so easy. I never set foot in my office again.
With disability issues taken care of, I went on a disclosure rampage and told everybody but the mailman I had HIV. Wait, I think I even told the mailman. Anyway, it felt remarkably good. And -- bonus -- leaving work saw my health improve, and my numbers edge up. So, feeling good again, I decided that while I had all this time on my hands, I would volunteer at the local AIDS agency. What a slippery path that was . . . .
Three-piece suit and tie were exchanged for black T-shirt, Levi 501s and Doc Martens, an ensemble de rigueur for activists of the day, while conveying a previously missing butchness to my catalogue of looks. It felt good too working at the ASO, answering phones and directing traffic at the front desk. I felt important for the first time in a long time.
That was 1994. The rest is s history. I now find myself not counting numbers in a bank tower, but dissecting reports on semen, syphilis and undetectable viral load. Gay men's sexual health has become my beat. In fact I know more about semen than most sex club owners.
The magnitude of the change I've undergone never escapes me.
But it's not just how I spend my time. HIV affects how we think, how we value our lives and those of others, how we decide what is important to us -- and what isn't. I'm not talking about spending every day as if it was our last; that's way too trite, but in the old days, we all said it anyway , like we should all just go to Disneyland, to see Mickey one last time. No, it's all about an appreciation of what matters that comes from personal trauma.
This comes in many colours, of course. My version was wanting to make the best of my life, to make a contribution, to make sure my obituary didn't just include couch surfing, or being a good flower arranger. I wanted, I guess, to make my mark.
I suppose that's why I plunged into AIDS work back then. I was driven to start blogging too. That was in 2003 and I became quite obsessive about it, blogging each day, every day, in order to establish a record of my life. Self centered though that may have been, it was good for me. I gained confidence, a voice and an audience. Look at my LiveJournal blog and you'll see 2,652 journal entries, which attracted a total of 96,506 comments -- forty something a post!
I rattled on about everything in those days -- my dogs, my home (then a farm in rural Ontario), my friends, my fascination with American Idol -- and HIV. I wrote a lot about HIV. It was my little project to educate the world about what living with HIV, a pretty normal gay guy living a pretty normal life, looked like. All this time, I kept looking over my shoulder at the guy in the three-piece suit working on the 52nd floor, next to the corner office, who even his secretary didn't know was gay, yet alone poz.
Fast forward a few years, and I am the Editor of PositiveLite.com, a changed man again, with close tabs on a fast-growing news/blogging empire. But I'm also still a details guy. Today I did indeed spend hours studying semen -- not of the real, sticky in your hand variety, but research related to semen and viral load. You have to know a lot about semen to go there. I do. Call me a semen expert, if you like.
I like this kind of stuff though. Often, I'm interpreting research in ways that others can understand, all the while putting, I suppose, my personal spin on it. We all do it in the news business. We get good at recognizing the spin of others too. So besides being a semen expert, I've become a spin doctor, thanks to HIV. Thanks to HIV, I also know a fair bit about social media now too, and how it can work for you. I bet my colleagues back on the 52nd floor don't even know what a tweet is!
I've also learned to have opinions -- some would say I'm opinionated, and there may be truth in that. I have opinions on everything, including who will win American Idol. That assertiveness that I did not have in the bank comes directly from the HIV thing, and from wanting, I suppose, to be somebody.
With it too comes respect, at least in theory. I like to think there are some out there who respect me, even if they are just my three beloved dogs -- Dudley, Dougall and Peggy. Well, at least one of those respects me, two on a good day. I'll write about that another day for I feel the pets in our lives are truly important to people living with HIV who have them.
You'll note that most (all?) of these changes I've mentioned are positive things. So yes, I'm part of the HIV gang -- we must be dreadfully annoying at times -- who continually point out how HIV has changed us for the better. This must confound prevention experts who would rather we bemoan how awful are our HIV-riddled lives. And let's be clear; it's no picnic for many. For some of us though, the lucky ones, HIV has been a good thing. It's shaken us up. It's made us smell the daisies. (Or is that roses, I can't remember, but no matter.) It's made us make something of our lives.
Anyway, time to get back to my semen studies. Until next time . . .
A banker turned AIDS activist, Bob Leahy is the busy Editor of PositiveLite.com, Canada's globally read online HIV magazine by and for people living with HIV. Diagnosed with HIV in 1993, Bob has held almost every volunteer position in the HIV community imaginable, including chairing his local ASO and serving on the boards of the Ontario HIV Treatment Network and the Canadian AIDS Society. Recognized on the Ontario AIDS Network's prestigious Honour Roll, his interests lie in social media, gay men's sexual health and making HIV research intelligible for all. A long-time blogger, this ex-Torontonian lives the rural life with his three dogs and partner of thirty-one years.
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May 19, 2014 - Memoirs of a Caregiver, Part 3: A Blog Entry by Bob Leahy
April 8, 2014 - An Ill Partner, an Ailing Pet: When the Tables Are Turned -- A Blog Entry by Bob Leahy
March 16, 2014 - Both Sides Now: Caring for an HIV-Negative Partner -- A Blog Entry by Bob Leahy
September 28, 2013 - Hooked Up: Exploring HIV Disclosure Online: A Blog Entry by Bob Leahy
June 17, 2013 - Why We Need to Re-Assess Barebacking, Stop the Stigma and Be Honest About the Risk: A Blog Entry by Bob Leahy
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