I’m not asking that question with the expectation or desire even to hear an answer. But I will explain where the question originated. I have just this minute finished watching a “Life and Times” of Janet Connors. For those of you, who like me, don’t/didn’t know who Janet Connors is, she is a HIV/AIDS activist who contracted AIDS from her husband who was a hemophiliac that contracted HIV from a blood transfusion as a result of the Canadian Red Cross blood screw-up. Her impact on the lives of many was evident through the telling of her remarkable story. And it was through seeing that story told that the “remember me” question was planted in my head.
Janet said that when people are dying or facing death their biggest fear is that people will forget them, that they won’t be remembered. So for much of the show I sat with that thought, and I’m still sitting with it. Is there a possibility that at some level all of us “activists” have that fear of being forgotten playing some role in our efforts to influence change? I’ve never considered myself an activist, though I have been referred to as such many times by various media. Whatever you want to call what I do is fine with me as far as this message and train of thought is concerned as that is not the issue I’m pondering.
But instead I’m wondering what role that fear has played, if any, in my chosen direction of starting RealTime Cancer (RTC). Have I started RTC because I was afraid of being forgotten? I will say that upon initial reflection that is not why I started RTC as truth be told as much as I thought about dying and planned for it as I recovered from my first transplant, I never thought that I would die. I knew it was a distinct possibility and I did my best to work through my feelings related to that possibility but for some reason I always internally, in my gut, favoured this vision I had of myself at my victory party. A victory party that I did ultimately have during the first year of RTC’s operation. So RTC was started at a time when I really felt that I was going to get through this thing and “live happily ever after” (whatever that means)!
Upon further reflection, I have to say that there is definitely something to that train of thought. As I continue to spend time with the possibility that I don’t make it to 29, 30, 40, 80, I do think about what will happen to my work. What will happen to the effort and energy I have put into RTC? I have no concrete answer for that and I suppose there really isn’t a concrete answer for a question of that nature. But I can tell you that I think about it a lot. Those thoughts have been sparked largely because in the past eight months I have spent a major amount of my time on a strategic renewal process for RTC that was really instigated to do a couple of key things a) increase RTC’s sustainability in the long run b) meet this need of inspiration, non-medical information and support that exists within Canada’s young people and last but not least c) reduce RTC’s dependency on me. That third item was so important to me.
The example I always use to justify and communicate the importance of that third element is “what if I wanted to take off, tomorrow, for a year and go on safari in Africa, what would happen to RTC?” What I really mean when I say that is, what if I got sick again tomorrow and faced the end of this life, what would happen to RTC then? Well, I have great comfort in saying that we have begun to roll out a strategy that will ensure RTC is around whether I go on safari, figuratively or literally.
The new website and portal are major parts of that strategy and so is moving into new parts of Canada. By that I mean formally moving into new regions and beginning the process of building a structured presence there. And as we roll out this strategy, and do all the things a new strategy requires (new activities, new procedures, need for new money, bigger, better, more involved demands and opportunities) I can tell you that at some level I do get comfort in my gut that I’m really working towards building something that has a good chance of being here for a long time. And maybe at some level I take comfort from the fact that if RTC is here for a long time, even longer than I am physically, that there will be a part of me left behind.
I think this message has really raised more questions in my head than stated any answers but it was an interesting flow of thoughts that I wanted to write. I’m sure this concept of “remembering” will cross my mind again many times and I know that I’ll continue to explore it. To answer the question about the fear motivating me I have to say that I don’t feel it has. Truly deep inside in my gut I don’t feel as though that fear has played a role so far but I will definitely do some more exploring on that and get back to you.
Always… Live life. Love life.