The power of choice

I’m thinking about death in recent weeks. Though I occasionally read and write about death, it's in the abstract—I’ve never contemplated it seriously; I mostly dwell on life. Just the odd fleeting, cerebral thought: oh yeah, death is out there somewhere.

Cancer, for most of us, isn’t the near-term death sentence it used to be. But now that it’s starting to feel less jarring to say, “I have breast cancer,” I’m waking up to other implications. Suddenly, it dawns on me that my time isn’t just open-ended. It may not come any time soon, and I may not die of breast cancer. But it’s no longer out there like infinity. This sounds very Bart Simpson on paper (doh!), but as I experience it, it feels like a sea change.

So I’m hearing stories of death in a more personal way. Like the moving piece on the radio this morning (as I write this) about Stephanie Rinka, a dynamic woman with ALS who, before she was sick, always said she wouldn’t want life support; but who, faced with the choice during a medical emergency, decided to go on a ventilator rather than accept an imminent death. And how her decision changed her and impacted her family; how she disengaged from them until she died.

By coincidence, we updated our wills last year. We originally created them when our younger son was born. Back then I nonchalantly said: Of course I don’t want to be hooked up to technology if I can’t keep functioning without it. Thirty years on our circumstances have changed, but in bringing those plans up to date I didn’t think twice about leaving that directive in place. I’ve said it to friends and sisters too: please, just put a pillow over my face if I end up unable to use my brain, to communicate or to live in any but the most literal sense of the word.

It’s almost frightening how treatable “old age” diseases like cancer and heart disease have become. Science is helping us live longer and theoretically better lives. I say theoretically because at the same time medicine has been extending life, we now put many old folks into facilities as they become increasingly dependent. While I have no experience with these places and I’m sure there are some attractive, even caring examples, it’s ironic that as we’re living longer, society has created an industry to house us and tend to us. Furthermore—and again I’m wandering into territory I know little about—I wonder if we’ve made the same strides in mitigating dementia’s terrible cost to the quality of life as we have to the quantity of life.

One area I do have a bit of recent experience with is with insurance companies. I’ve been jumping through hoops late in the year for the last five years, sorting through a bunch of apple and orange choices to compare benefits and costs and what-ifs. Even with the help of a broker, there’s legwork and paperwork to do before I feel confident I’m making the best choices for me. Not surprisingly, my cancer diagnosis has made this process more fraught than usual.

Which circles me back to choices. I was explaining to someone recently how I learned about the power of making my own choice. In the circumstances I described, my business was in the black, my partner wanted to dissolve it, then a client decided not to pay his bills. That meant I had two tough choices: either stiff my suppliers or come up with thousands of dollars I didn’t have. I felt so stressed and conflicted. Then I realized that my choice wasn’t about either of those things; it was actually about what kind of person I wanted to be. From that point my way was clear and, if not easy, I felt just fine about it—because it was my choice. (I negotiated, agreed on a payment schedule, and in two years it was settled.)

Anyway, the moral of this story is that there are infinite things I have no control over, but when it’s in my power, I get to make a conscious choice.

I’ve been focused on choosing how to live. Turning my thoughts toward dying is new. If I have a choice, just how old do I want to live? Do I want to be Maude of “Harold and…” fame, committing suicide on my 80th or another arbitrary birthday?

Is there a point when I decide it’s not a good investment of energy and mental fortitude to keep prolonging my life with medical interventions? Say I beat this cancer for the next ten years and it comes back. Do I go through chemo and surgery and all the rest again, because at that point I’ll only be 78? Will I feel I have plenty of active, productive years left; more time to give back; more art and family to live for? Or, say cancer returns in twenty years. No doubt by that time I’ll have accrued more irritating decrepitudes. Is that too old to think I have enough good experiences to look forward to? Will I still have so much to live for? Will I consider throwing in the towel?

My mom had MS when I was growing up; she was mostly in remission but it would flare up when she got really exhausted. With five kids that wasn’t out of the question. Then in her late 50’s she got another autoimmune disease, a rare, nasty one: scleroderma (chronic hardening and tightening of the skin and connective tissues). There’s no cure and it’s a long, slow death. A few years after that she also got bladder cancer, which on top of it all sounds terribly unfair, right? No, that made her happy. Because it gave her a choice: she refused chemo and radiation so she could die sooner of cancer, avoiding scleroderma’s long downhill slide. I know this sounds grim, but I always felt a sense of gratitude that at least she could choose.

Some choices I want to make once, then not waste mental energy re-thinking them. (Who should cut my hair? Which eco-friendly car to drive?) Other, more important choices I make each day. I can see five months of chemo being a test that I want to think about in those terms. I imagine waking up, no energy, feeling like crap—and gathering my wits to decide I want to feel positive about something. That’s exactly what I mean by the power of choice: I can’t choose to whether or not to have cancer, but I can choose how to feel about it, how to behave through it. Some days I’ll no doubt give myself permission to do nothing but watch Gray’s Anatomy. I’ll warn my family that I’m feeling like a crab, then proceed to act that way. Other days, I’ll probably decide I’m tired of being a crab so I’m going to do something different. Like inviting a girlfriend who makes me laugh, or sketching, or getting myself to the gym, even if I have to wear a germ mask.

And when it comes to dying, if it’s in my power, I want to make my own choice. I could be hit by a garbage truck, in which case I don't get to choose. But if, with the help of science, I just keep getting older, if I slowly lose mobility or motor control or memory or all of the above, why can’t I decide when it’s time to die? I don’t fool myself that this would be easy. But that’s the beauty of learning this lesson early in life: I’ve never found a hard decision to be impossible when it’s my choice.

Image credit: Calicut Medical College [CC BY-SA 4.0 (https://creativecommons.org/licenses/by-sa/4.0)] © 2019 Susan Cummings. All rights reserved. Originally published on Boldtimer.com [How to grow, while growing older]