I could say that the main reason I do this stuff would be "because I need something to do and I have a lot of time". But really the reason is it helps me learn more about what I'm living with, that I am going to live with, and I learn about all the new research and interventions that are happening that will allow me a long, healthy and productive life.
I've learned that I am not a victim. I can't honestly feel that I am a survivor. I contracted HIV in a time when medications were available but I didn't need any of them for seven and a half years. My diagnosis has never been a struggle, I have never been sick or had any of the common symptoms. I tested positive in 2003 so for me a survivor is someone who lived through the time when there were no medications, back in the 80s and 90s, and are still here to tell me what that was like.
So my tour started off November 5th with our local Central West Ontario Opening Doors Counselling Forum held this year in my hometown of Guelph. Our theme was Mental Health and HIV. We did something different this year by having a one day Self Care Retreat, an opportunity for people living with HIV to come together to renew, refresh, reconnect and retreat. The aim was to provide the tools to help strengthen our resiliency within a supportive, holistic and nurturing environment. We were working on our individual "mindfullness". Some of the participants enjoyed an afternoon of Yoga, some went swimming and others attended a meeting to learn more about the new rulings by the Supreme Court on two cases before them concerning HIV disclosure. We also had an exercise dealing with meditation that I just sat through, I’ve had some bad experiences while meditating and I don’t like the feeling of possibly being triggered in the presence of other people. It’s a lame response - but that’s just me.
I was able to get back home to my own bed for a few days before heading out on the road again.
On November 11 I was up bright and early to board the train to Toronto for the OHTN (Ontario HIV Treatment Network) 2012 Annual Research Conference - Research With Real Life Impact. I attended this conference for the first time last year as a person living with HIV who volunteering for my local ASO (AIDS Service Organization) and someone who wanted to help my peers. It just seemed to be the next step to getting involved. I was also there as a member of ten writing team for PositiveLite.com.
This year I attended in many roles. I was recently hired by the OHTN so I attended as a PRA (Peer Research Associate). I am currently doing surveys with the participants involved in the Employment Change and Health Outcomes (ECHO) in HIV study. I replaced the gentleman who started it in our area and I was so happy to be recommended for the job. The training was top notch, I learned so much about the study, why it needs to be done and how these studies will help people with HIV live out their lives with safely, securely and with dignity.
This year the OHTN celebrated the completion of the "Positive Spaces, Healthy Places” study. Following lunch on the last day we got to hear from the entire team that supervised the study. Near the end of the presentation, we were told that it was a five year study and it involved more than 700 participants. When it was complete there were only about 350 people left in it. It was mentioned that many of the people who didn’t finish it couldn't be reached for a variety of reasons and some had passed away, I think the number was 54 that had passed away. Then a comment came out that drove it all home for me. "Some of the others may have passed away as well, but what if the survey had been done many years before: would more of these people be alive today?." This was a very powerful statement and made me proud to be doing this work.
I encourage everyone to get involved with community-based research. It is very confidential, you can give your voice to it and remain anonymous. Research can and does bring about positive change - and it can save lives too.
It did get a little weird when I opened the Research Conference program to see myself on page two. Last year I sat at a table with the now publisher of PositiveLite.com, John McCullagh and Editor, Bob Leahy and we happened to be centrally located in the room, the perfect positioning for the photo. This year we sat together again some of the time so maybe we’ll make next year’s program.
It was great to meet some of my co-workers, some I've only met via teleconference. Some had been doing this work for several years. I would welcome the chance to be involved in more research in the future.
I'm home now, taking some time to finally write this for PositiveLite.com. I’ve had a relapse of "blogger's block", making me look like a slacker .(Editor’s note: he’s not!) It was good to spend time with John and Bob to learn how the site is growing. We are getting pretty darnn good at this "social media" thing, getting the word out to more sites and the response has been very good and it’s coming from around the world.
Two days from now I will be back in Toronto for the OAN (Ontario AIDS Network) Information Meeting. Last year I was able to attend this one for the first time as well. This is the one where you learn a lot about issues involving and requiring advocacy.
I really feel lucky to have experienced so much. I’ve been able to help in my ASO and work with my peers, I’ve sat on the board of directors at my ASO as a person living with HIV and treasurer, got to see how all of that works. Now I get out to see how things work around the Province, meeting so many people, all of the great advocates and activists of our day, researchers, doctors, lawyers and scientists. It brings home that all that they do is a collective effort for everyone living with HIV.
And then there’s the networking. Every time I go to one of these events there is always a familiar face across the room or across the table from me. This tour is about to end for the year, there isn’t anything else for me until March next year I believe, what will I do till then?
My hope for the future is to get to some of the national and even international conferences, I would would love to go to Australia 2014 for the International AIDS Confernce, but it’s not likely…unless I win a lottery. Until then, I’ll be here.