I’ll be your beast of burden.

Some folks who make it through life-threatening experiences like a Stage 4 cancer diagnosis and its subsequent treatment think of themselves as having "learned something" about life, mortality, etc. Many of them are eager to share this wisdom.

I'm not one of those people. I have no idea what I learned from the experience itself (though I have lots of informed opinions now about cancer treatment and medical institutions, which I probably won't share in this space). Perhaps someday I'll figure it out.

However, a link included in a blog post from Alan Jacobs did remind me of one thing I learned about myself after being advised by two leading cancer centers that my tumors were inoperable (fortunately, they were wrong — again, I have opinions). At the time, I prepared for what seemed inevitable (and is, of course, for us all) by granting medical power of attorney to my husband, but I decided against developing an "advanced medical directive" — a document that outlines all of the various ways one might find oneself in a non-responsive state and what one would like done about it.

Many people believe that filling out these forms is a way to alleviate the burden on your loved ones, to save them from having to make a decision to, as Elaine Benes said, "yank [the plug] like you're starting a mower." As I contemplated the fill-in-the-blank directive template — a Mad Lib of mortality — I realized two things:

  • One, there would be little point to marriage if it didn't involve burdening each other; we are all burdens every day to those we truly love, hopefully joyous and loving burdens (if occasionally irritable).
  • And two, completing that form felt too much like I was trying to falsely bolster a sense of control over something which I had already learned would always be outside of my control — namely, my life. (Ok, so maybe I did "learn something" from my experience — but admitting that "we cannot actually control anything and should stop trying so hard" doesn't seem like the sort of feel-good lesson most people seek from their cancer-having friends.)

I'm an extremely fortunate person to have met and fallen in love and chosen to share my life (to its end) with someone I can trust to accept that burden, as horrible as it would be for him, just as he could burden me with the same. Others, I know, have different experiences, different lives, and I'm sure that detailed advance medical directives may be the right choice for many individuals.

Anyway, I thought of all that this morning when I followed a link from Jacobs' post to an article from Gilbert Meilaender and found that he summed up my own thoughts better than I can:

"I hope, therefore, that I will have the good sense to empower my wife, while she is able, to make such decisions for me—though I know full well that we do not always agree about what is the best care in end-of-life circumstances. That disagreement doesn’t bother me at all. As long as she avoids the futile question, 'What would he have wanted?' and contents herself with the (difficult enough) question, 'What is best for him now?' I will have no quarrel with her. Moreover, this approach is, I think, less likely to encourage her to make the moral mistake of asking, 'Is his life a benefit to him (i.e., a life worth living)?' and more likely to encourage her to ask, 'What can we do to benefit the life he still has?' No doubt this will be a burden to her. No doubt she will bear the burden better than I would. No doubt it will be only the last in a long history of burdens she has borne for me. But then, mystery and continuous miracle that it is, she loves me. And because she does, I must of course be a burden to her."

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