Let me start by naming two of my heroes in cancer writing: Susan Sontag and Barbara Ehrenreich. Susan Sontag, in her book Illness as Metaphor, showed how diseases like cancer and (before that) tuberculosis have been used as metaphors for individuals as well as groups. Tuberculosis patients were described romantically as ennobled by their disease. Cancer patients have been historically blamed and shunned. Sontag, a cancer patient herself, insisted that cancer is nothing but a disease.
Today, that shunning has been replaced, especially for breast cancer patients, by a culture of relentless cheer. Here's where Barbara Ehrenreich steps in with her essay "Welcome to Cancerland," which I heartily recommend (http://archive.bcaction.org/...).
If Sontag were writing today, I expect she would turn her critical pen on the latest language of cancer, for example the terms "survivor" and "journey." We are all, apparently, "survivors" from the moment of diagnosis to the moment of death. For some of us, this is a long time; for others it is distressingly short. It may be, as Ehrenreich says, a preferred "state of mind" that society would like us to have: upbeat, victorious, not too much of a bummer for those around us. The journey metaphor, well, OK, it's well-traveled ground for how life progresses. But it only works if you focus on the traveling and not the destination, which is the thing that bothers us.
Well, you have gotten the idea. Cancer gives us a lot to think about, and I like to write about my thoughts. Having cancer, however, has not made me more generous, tolerant or grateful, and it has also given me a great reason to be unapologetic! So, read on if you care to....
Entry ONE: Some tips for those who do not have cancer, and wonder what NOT to say to people who do have cancer:
1. Much has been written about this. But it's worth reiterating. Do not tell us about ANYONE you know who has/had cancer. We don't care. Do not tell us about either positive or negative outcomes. Negative outcomes are depressing, for obvious reasons. Positive outcomes are irrelevant. Each one of us is a statistic of one.
2. Do not ask us why we think we got cancer (yes, amazingly, a physical therapist asked me this one). Who the F knows.
3. Do not advise us to live in/enjoy/appreciate the moment or seize the day. We struggle, obviously, to do this. Consider that a person's ability to enjoy the present depends in no small part in having a fairly reliable future. Consider also that this discourse is a potential slip on the slope towards a cheerful "survivor" discourse in which even people with cancer sometimes characterize their situation as a "gift" that helps them to clarify life's priorities. Most of us would be happy to give our "gift" to anyone who wants it. And many of us have the new priority of actually remaining alive.
4. This would seem to be obvious, but it's not. Please avoid "future talk." Do not ask us where we plan to live when we retire. In my own case, at age 55, my preferred retirement age (70) exceeds any reasonable life expectancy for someone with my kind of cancer. You might also want to edit your own future talk, and the things you anticipate (retirement, children's weddings, grandchildren etc.) that we cannot, plausibly, aspire to share.
5. Please do not tell us how hard it is for you to lose weight, change your diet, adhere to an exercise plan, or manage any other non-life-threatening conditions. We would like to care, but frankly, we don't. Actually, we would love to have your problems and the ability to fix them with modifications to our lifestyles. We also don't particularly want to hear about your preventive health measures. You may well have a diet that is vegan, gluten-free, sugar-free, organic, high-fiber and filled with foods with anti-oxidant properties. You may be taking additional supplements, avoiding plastics, cell phone radiation and exposure to the sun. Good for you. Why don't we want to know? Well, none of these things worked for us and it's hard for us to believe that they would change our outcomes.
6. We also don't want to hear about your 80 or 90-year old parent or relative and their problems. Sure, growing old and being sick or limited sucks. But not growing old sucks even more.
7. What's left? The best email I got in response to news of my breast cancer was from a friend who wrote, simply, "UNFAIR." Just acknowledge how bad it is. Be our friends.