The lesson this week: think before responding to detractors, and the more people tell me I can’t say something , the more committed I am to saying it.
I set out way back in 1987, two weeks after my best friend in the entire world at the time died, and I ended up on the public speaking track. Even though getting up in front of people was the scariest thing to do.
A fellow died on a Winnipeg hospital palliative care ward way back. After he died, the infection control nurse at the time said to one nurse, “At least Terry isn’t suffering anymore.” To which the palliative care ward nurse replied, “I don’t think he suffered enough.”
We had to form a human chain around Terry’s casket outside the funeral home to block CBC news from filming it.
In Regina, the guys were so afraid of anyone finding out about their status, they would not go to see a doctor, and would only receive medical care if dragged into hospital by ambulance.
At the time there weren’t regular CD4 tests, and when they were, they had to be shipped up to Saskatoon to be processed. Finally we had arranged for once a month blood drawing. I literally had to hand hold a couple of people going to the hospital. The thought of sitting in a public waiting room was almost too much for them to handle.
In Regina, I had a dental assistant give out my personal information to her husband who called me at home. I was shocked. The hour turned into a counseling session, and I managed to make my way through it. Being in a city of 180,000 people, I felt so vulnerable.
This was after I had agreed to have my name on a press release for World AIDS Day in Regina by Sask Health, not realizing what kind of media frenzy would ensue.
Ironically, in Saskatchewan, there maybe had been one other person who was courageous enough to be public. This was a time when there were no medications, people were dying horrible deaths, and to admit to being HIV positive was to admit to being a leper.
Truthfully, I was scared to go out to the gay bar after that. In my mind everyone would be pointing at me and talking about me. Instead I received a lot of respect. Once I finally did get out, I had a great time.
These are the roots and history I come from. This was a time when many services did not exist for HIV+ folks. It took a lot of advocacy work to get the Village Clinic operating at the time. I didn’t come on the scene until the Clinic was well set up. I hold the grand title of the first person they had to give a positive test result to.
Not related, but by chance, my attending physician at the time committed suicide three months later at the very hospital where the nurse whose empathy left little to be desired.
I was asked to speak to those palliative care nurses after the “incident.” It took all the courage I could muster to get up and talk in front of people, even a small group of eight. The evening went well, and I spoke to another group of nurses and that’s how it all started.
These are the kinds of things I mean when I tell others to muster up their own courage to do what they want in life. Find a challenge, take on a fear, do something to not have HIV be the sum total of all your parts.
Back then we fought the victim stereotype. In the media we were labeled as AIDS victims. By extension many felt there were innocent victims in all of this, especially wives of gay/bi guys, children and those infected through blood products.
Did I forget to mention that so many people were dying that I had lost count, meanwhile waiting for the other shoe to drop?
What got many of us through those dark times was humour. It was an essential part of our coping mechanism, especially when working and living with HIV.
This is why I snapped, when I shouldn’t have, at some guys on the internet. After the moment passed, I took everything down. It’s always frustrating to put a lot of oneself into something, and then have people sit back and judge, and I mean morally.
This is my truth, and this is my voice. I can safely say I earned it. Even if I let that voice go way off at times, it’s still my voice. Nobody is going to shut it down.
If you don’t like what I have to say, then go out and do this kind of stuff on your own. Create your own voice. Take the initiative to do something other than complain.Take part in a stigma campaign, get your face out there. Visibility is important.
My own personal journey living with HIV has evolved so much over time. It's a journey full of experiences that someone newly diagnosed couldn't possibly understand, unless they were old enough to live through it and become positive later in life. One does have to be positive for more than five minutes before he or she could know what came before them, and how this informs today's culture.
Many of us who’ve been living with HIV for such a long time are in search of more. I’m still here; now what? For me it was a question of pursing my long time held dream of getting into improv, sketch comedy, and doing stand up.
In a reactive moment I was actually being insecure, not secure. I was coming off a very busy week where getting on a stage and opening up is an intense and vulnerable place.
I just so happened to get this message from a straight male comic who has seem me perform, and it was perfect timing:
Was talking bout you and your awesomeness the other day and thought you should know! KEEP UP ThE HONEST, LIFE MY FRIEND.
The lesson this week: do not respond to detractors, and the more people tell me I can’t say something, the more committed I am to saying it.
- Tags: August 2012