I remember the first time I heard about HIV and AIDS. I was 12, and a friend in my grade 7 class had chosen the subject for a project. I walked away from it thoughtful; the information lay in the back of my mind for many years, something that seemed so far away from me, yet something I held on to. There have been times in my life I found it odd that the memory should be so strong, especially given that it was over 25 years ago.
Like many of my generation I started to get tested regularly, to keep a list of those with whom I had sexual contact just in case. I had heard many stories, read the articles, cried through the movies and TV shows. I did my best to keep myself informed and aware; I volunteered time, money and energy to various organizations. I did what I could but it was never a focus, beyond the mother of another girl I went to school with, it hadn’t touched me.
Somewhere in the last 10 years that began to change. There are moments where it seems like I woke up one day to find HIV and AIDS had crept into my life in very real and overwhelming ways. It seemed almost as though I turned around to find that many of those closest to me, the majority of those closest to me, were very deeply affected. I couldn’t avoid it any longer; it was no longer something that happened to other people. It is happening to my people.
I am reminded of another experience not quite so long ago. I had joined some friends on an AIDS walk, it was only five kilometers, an hour of my time and a bit of fundraising; in the grand scheme of things it was very little for what I gained. All along the path there were people cheering us on, high school kids earning their volunteer hours with high fives and smiles. The end of the walk was met with other volunteers handing out red carnations as we approached the AIDS Memorial.
I’d never been before; I’d never seen the lists of names that started with screams. As we walked along the pillars the sheets bearing the names of those who had passed went from screams to a whisper. In the early years there were so very many, many more than I’d expected. I wept as I moved along, trying to read each and every one, to mark their passing in my own way. The further along I got, the shorter the lists became, speaking in silence of advances in education and medicine. And yet we still have so very far to go…
After we emerged from the heavy silence of the memorial we were once again greeted by the cheers of the volunteers. It was overwhelming, almost rude. I remember commenting about it to a man I deeply respect, more than that I remember his response. He said that was his favourite part, the part that he looked forward to it every year because it was a reaffirmation of life.
As many may or may not be aware, I have Type 2 Diabetes. For many the assumption is that that it is the result of obesity, or a lack of self control. That this is something I have done to myself. The truth is it happened and is now something I have to live with for the rest of my life. While I may flog myself in my low moments with the Whys and Hows of it, the reality is…it simply is. This doesn’t mean that I can understand all that it means to have HIV and/or AIDS, but it does offer me a bit of insight.
It may be a gross over generalization, but I can’t help but feel this is the same for anyone suffering from any chronic disease. Each of us is challenged by our illnesses, and the stigmas that surround them, we are forced to review and re-evaluate the lives we lead, to make changes and face our demons…whether we like it or not. In many ways we are all challenged by the preconceived notions, and in some cases the prejudices of others. Perhaps it was a natural progression of things that I should find myself seeing the way the world treats those who are deeply touched by the complexities of HIV and AIDS.
Even as I write I find myself struggling with language, working hard to find the right words to convey my thoughts and feelings without perpetuating the stigma. To say that my heart breaks every day for the blind cruelty I see is an understatement. Like many things the intension to cause hurt and harm to others may not always be at the forefront of one’s thoughts, the reality is hurt is hurt. As a good friend often says, hard is hard.
Recently I found myself blessed with the opportunity to listen to someone I greatly admire speak about the stigma many face around this disease, about meeting the fears of others with kindness…or a friendly smile as it were. I felt challenged and inspired by him.
The truth is that at the end of the day all any of us can do is our best, we can choose how we behave, how we treat others, how engaged we are in the lives we lead. At the end of the day, I am not a maker of waves, or a bringer of change. I am a creature who causes ripples, and it occurred to me that perhaps this is enough.
At the end of the day I choose to be open and present, to continue to educate myself and those around me, to reach out with my heart, and more than anything to treat others as I would have them treat me.