I’ve decided to write a series on how we look at success while being HIV positive, and particularly relating to those who have been positive from my era.
I’m interested in us, those who have been around a long time. Those of us who struggle as part of our identity and success as often defined - in employed work - has been taken away from us. I’m also talking of those of us who are challenged by the issues we face with HIV and aging, and the long term consequences of living with this virus, and the medications for which we were the guinea pigs. We the original activists, the original public voices of HIV and the original first generation to age.
With time our voices are diminished, and put to the side. Now we have to deal with ageism, but also a whole host of new challenges that don’t fit into the box of success in which we were programmed to believe. So . . if it’s not about power, fame, money or employment status, then what is it about?
What is success?
I want to explore success as I work on these questions myself. I don’t have all the answers, but I’m sure together we can start a dialogue. I’m going to commit to undertaking in bits and pieces the information that’s been given to me on how to reshape the way I look at my life, and how I can see success where I didn’t before.
Prior to going on disability, the first life schism was the diagnosis of HIV in Winnipeg in 1987. This was approximately two to three weeks after my best friend died of AIDS in Vancouver. My doctor at the time, three months later for completely unrelated reasons, committed suicide.
So many people were dying, and the thought of effective treatment was beyond hope. We were in full-on crisis mode. All I could think of was that I’d not get to see the year 2000, a time I’d wonder in my teens where I’d be in life.
Education seemed completely irrelevant. I quit all my courses at the University of Winnipeg, except one, my French literature class. The following year I dropped the Urban Studies program in which I had just been accepted and wrapped my BA in French studies.
Not only was I a dysfunctional shy person who dropped any course the moment I discovered I’d have to make a presentation, I had very little self-esteem, and now the world had defined me as a leper. I was the person who’d cause panic if invited to a dinner party, or played with their children. Many believed I got what I deserved. It was the first time in my life I felt completely dehumanized.
At the age of twenty-two I was supposed to have my future ahead of me, and instead I was left out in the dark on a country road, only able to see a short distance into the future.
My short pre-HIV life was my umbilical cord to everything I knew; the person that was me more or less died that day. There were no role models of hope, and no long term survivors to look towards.
Since then I’ve felt like a monkey in the jungle of life, grabbing one branch to swing off to another. Change and renewal have been a constant thread in my story, but in search of what?
For a few years I worked in AIDS service organizations. After burning out, I took a break and retrained as a make-up artist and landed a full time job with a major cosmetics company. With hard work, and wanting to learn as much as I could, I made my way through the company until I became a corporate trainer within a year-and-a-half.
As you see my definition of success was taking something on and becoming good at it. Success equaled achievement.
With the company restructuring, I burned out again from yet another dysfunctional work environment and the challenges of trying to be compliant with the first generation of protease inhibitors, I chose to go on disability, but only for the short term, to regroup.
Instead I moved in with an abusive drug addict boyfriend with the last name of a serial killer (let that be a red flag), joined the crystal meth and GHB party until I was suicidal. I didn’t think I had it in me to pick myself up once again.
By this point, I had no sense of future, no dreams. It felt they died the day I left work, left to flounder in a sea of no structure, no responsibilities, no feeling of achievement.
Broke and in debt, I put an ad out in a local gay magazine as an escort. The abusive boyfriend kept putting me down for not having money. At the time I wanted to just pay off my Visa card and save up a little. “I’ll give it about six weeks.” I said to myself.
Then I started traveling to New York to make it my second home, and eventually Amsterdam and Europe. The crazier and more extreme, the better it was. Eventually I became, as a friend put it, “a citizen of the world.” I went from suicidal to sitting at a restaurant with a beautiful view of Manhattan from a Brooklyn Heights restaurant.
I’ll always remember after sitting down for dinner and a couple of glasses of white wine, walking by the canals of Venice with tears in my eyes,wondering how I could have gone from such despair to this larger than life glamour, as it felt at the time.
In 2002, I had become so depressed. I felt as if I were no longer part of mainstream society. I went to the south of France, a place where I had lived at 19 years of age. Looking on the Mediterranean I wrote a journal entry outlining some goals. This marked a life- defining moment when I felt things needed to change.
That day sitting in the sun I charted a new course for myself. It was time for a new life. My health was sucking. I had created a self-fulfilling prophecy. Short term disability became long term. I’d become resistant all available medications. This was when I realized I may be out of options for treatment, and there was no destination that could fill this hole I had.
I pensively watched the blue sea. The lyrics from a song float by, “If you believe you are half way there.”
I began to cry. I realized that I stopped believing. - The Peggy Lee moment I called it. And I started to believe life could be different, that I could have dreams again.
But what were they? I didn’t know, I just had to believe.
To be continued . .