June 23rd, 2009: Since I have started to refer to myself as terminally ill, I have heard the same concern from many people which can be summarized as: "I don't know what to say." I'd like to address that dilemma which is very real and which will not be going away over time. In fact, as my health declines, it may well increase.
First, you can always step right through the confusion by writing and simply saying, "I am thinking of you." That's all. Just, "Thinking of you." To me, that's a very full communication. Also, it gets you out of the conundrum of not knowing what to say. You've just said it simply and clearly. I will know that we are connected. I know that anyway, but direct communication makes it more real. Most of us have lost family or friends in a manner that has remained painful. Now I am joining that community of people who are leaving or have left you. It's hard to know what to say. In my case there will probably be time to unfold many of the feelings that we carry and express them to each other. I hope for that. As my friend Betsy said recently, "You don't have weeks and you don't have years." Exactly.
Whether there's direct gratitude for the warmth of our friendship or a more restrained withdrawl, everyone can witness. You are in complete control of what witness means for you. If you read this blog or not. If you send me an email or not. If you call or not. If we have lunch or not. All of that is witnessing, including the "not" portions. "Not" is part of how we all manage our feelings as my illness progresses. After living through the AIDS epidemic, I have experienced not going to a memorial service because my grief was too big. I have experienced not helping someone who needed help because I couldn't endure more suffering in someone I cared for. What I am saying here is that I learned to fit what I could do with what I couldn't do. There was only one of me.
As my illness progresses, all of us will make many decisions about what we can do and what we won't do about staying in touch. I would like that to be OK and part of the agreement between us. Also, I know how to use the phone and connect via email. I won't be calling everyone on a regular basis but if I need to get in touch, I'll be responsible.
Moving forward, I want to acknowledge the challenge of staying in touch. For my part, there's a point where I won't have the energy to reach out any more. I'm not there yet! Please know that each of us experiences confusion about saying goodbye, and we all evolve our our own ways of living with this discomfort.
Now for a totally different subject: This Sunday is the Gay Pride Parade in San Francisco which is a high holy day on my calendar. Every year, I go to the parade and get hugely energized by the diversity of being out in my community. In the decades I've gone to the parade, I always stand on the curbside cheering the marchers since that's the best way to see all the participating groups. This year, I have plans to go to the parade with my friends Ed, Gaetano and Ken. However, this evening at the Maitri board meeting, I heard that Maitri is sponsoring a contingent. There will be 30 to 50 marchers plus a motorized cable car with residents who will sit a wave from the moving vehicle.
For the first time, I am seriously torn: stand on the curb and see all the groups or be inside the parade and see all the spectators? I've been told that walking up Market St. for blocks and blocks of cheering love is a very powerful upper. What to do? Since this may be my last parade, the decision has a certain urgency and excitement. Win, win. I'll lt you know the outcome. Let me add that I am grateful in my lifetime I can make such a luxurious decision because there IS a parade.