It was a little over two years ago that I discovered I had cancer, and there was a period of a few months where each week or two seemed to bring a more ominous parcel of news: myeloma is classified as incurable, or, in the delicate phrasing of Blue Cross/Blue Shield, "inevitably fatal"; various of my bones, notably my back, ribs, long bones, and skull, have "innumerable" lesions (aka holes); the tumors have a specific "high risk" mutation that disables (actually destroys) TP53, the "guardian of the genome" . . .
I'm not given to drama, but it's a lot to take in out of the blue. It's also a lot to unload on other people, especially family. Liz has had to absorb this on a daily basis, of course, and has been there for every single office visit (there have been many, many office visits) and the vast majority of the infusion sessions, biopsies, line insertions (and re-insertions) and removals, C/T scans, MRIs, dietary assessments, apheresis sessions, discussions of my bowel movements, nausea, etc. Not to mention much travel back and forth from Rochester, Minnesota by air and land. Liz has done all of this, dealing with the coming reality of life without me (not to overrate my contribution, but after 30+ years the change at least will be daunting). Meanwhile, she has been subject to years of cruel abuse both from her (and my) former department chair, and from, of all people, our son's girlfriend (or, as he says, "partner"). Why exactly the abuse rains down on her is a subject for another blog or two (coming soon). But it's real, it hurts, and I've been no real help.
Most people (excepting those special cases noted above) are shocked, sympathetic, at a loss, when news of this sort is presented to them. I know the feeling from both sides now, and it's real, too. After a little while, I realized that if I told my story to someone new, it was more stressful for the listener than for me, since I already knew the story. But a story wants to be told, and I probably have told my story more times than I needed to. Here I go again, for instance.
Two years out, there's little obvious drama. Although it's still not curable, the disease is stable now, and might remain that way for quite awhile. I will admit that I have often checked my watch during the flat part of a movie. Or at almost any moment in a French movie. The lack of drama is sometimes almost disappointing to me, which is really stupid. Drama will do me no good. Yet there is this vague but insistent feeling that I should be doing something, fighting something. I've said before that a cancer patient is the battlefield, not the soldier, so fighting cancer is not an option, not really.
What I should be fighting is the injustice and ignorance in the world. Nothing to do with my health, which has to this point been as privileged as any cartoon version of a 21st century white man would have it be. One part of the exams that my class of anthropology majors faced in 1980 was a response to "Reinventing Anthropology," a book from the early 70s that confronted us readers with a full-in-the-face onslaught of raging cultural, political, and ecological problems [the later 70s on college campuses, for those who weren't there, was a relatively soporific period of sex and drugs and rock and roll mostly devoid of the drama that accompanied the civil rights and anti-Vietnam war protests of the previous decade].
Confronted at age 20 by my professors with the realities of the world, and with little experience of real world politics, I must have sensed something about myself that has held true over the almost 40 years since: I have no ability to convince other people to change their behavior. Trust me, there have been ample opportunities to test this. Results have been consistent. I don't think my arguments have been especially weak, but I do not often close the deal when the people on the other side have other ideas. I must have known or suspected this at the time, because my proposed solution to the problem of the world going to hell in a handbasket was not dependent on persuasion. It was to lead by example, or rather by structure. Self-sustaining communities, intentional cultures built around shared (appropriate) goals, seemed to me to be the best way forward. These could be families or something larger, or really large families. At the time, I didn't really know what a really large family was, but I have learned a great deal since I was 20.
For better or worse, Liz and I have not ourselves raised a really large family, although a really large family has been a part of Liz's world since she was a child, and a part of mine since I met her. Instead, we raised a little tiny family of two children in a house too big (and too geologically unstable) for sustainability. We've had to travel great distances for many years to keep being part of the bigger families of which we are members, and while we do that happily, the sustainability of the model is suspect. As it happens, one of our two children has found it necessary to sever his ties with us. So even the mini-model of community is beyond me, it seems.
Hell in a handbasket? Seems like we're going there fast. You can get a t-shirt. I'm still no good at persuasion, Q.E.D.
