There Is No Right Way to Die: Bill and Emma Keller Attack Cancer Patient Lisa Bonchek Adams
There are two moments during my father’s four-and-a-half year battle with cancer (and, yes, I’m using the word “battle,” even though I hate using the language of war when talking about disease, but it is not easy to find the right words always, when speaking about the near unspeakable), that stand out to me more than any others. The first was just after he was diagnosed with Stage 3B lung cancer and took me to dinner at the Oyster Bar in Grand Central. The Oyster Bar was where he often took me for my birthday, and he would save the menu and give it to me because they were printed out daily and he thought I would want to have the ones with my birthday written out on top, so that I could always remember our meal. We sat in the back, in the bar room, and as my otherwise healthy, 54-year-old father, who had smoked a pack a day in his twenties but had long since quit, told me about his lung cancer, all the while reassuring me that he would do everything he could to fight it, and that he had no intentions of going anywhere. He didn’t save the menu that night, but I did.
A little more than four years later—and three-and-a-half years since the cancer had progressed to Stage IV—I sat with my father in his living room and he talked with me about a new plan his doctors had. It involved more chemo, more radiation, more of the same treatment that had left him without much hair, without much energy, without much breath, but had kept him alive so that he could spend more time with his children, his grandchildren, his friends, his dog. He was in daily pain. He had neuropathy in his hands and couldn’t feel his fingertips and grew frustrated when he couldn’t play his guitar with anything like the facility he’d once had. He didn’t have enough air in his lungs to really sing. He had coughing fits so strong that he would black out, no matter what he was doing. Once he fell during his 40th high school reunion, hit his head on a table, and needed stitches. Once he took so long to regain consciousness, and was so confused when he did, that he didn’t recognize me at first and I joked not to worry, that I wasn’t an angel, I was just his daughter, and his eyes filled with tears and he apologized. That’s what cancer does to some people, it makes them apologize for the thing that is killing them.
And yet, my father did not want to give up the fight. He did not want to enter hospice care, even though that is what many, many other people do when faced with a similar situation. At the time, when he told me that he’d had to make a decision—continue with new chemo that would have the same devastating side effects as the other types of chemo had, or enter the palliative treatment phase of terminal cancer, when a patient’s comfort is more important than any extension of life acts—I wasn’t sure what he’d decide to do. I think I’d convinced myself that I would be ready for whatever his decision was, because it was not my fight. But I know I cried with relief when he told me that even though his quality of life was important to him, the simple act of being alive—of playing chess with his grandson, of talking with me about Game of Thrones, of hearing about his son’s new job—was all that really mattered. It was his choice. And I was grateful for every extra day it gave me with him.
My father was a writer, but he wrote very little publicly about his disease. He did, however, read many books and many articles about others fighting cancer, and took great comfort (I don’t know if comfort is the right word exactly, but maybe it is) in knowing that he was not alone. He took great comfort in knowing that he was not alone not just in the world of terminally ill cancer patients, but also just in the world at large. One of the last things he wrote about his cancer was actually a comment on a New York Times editorial, in which the author, Bruce Feiler, outlined several things that one should never say to a sick person. Feiler, who is a cancer survivor, undoubtedly wrote the piece after having been inundated by the platitudes to which many people revert when talking to cancer patients, and wanted to spare other people similarly awkward encounters. However, the problem with Feiler’s piece is that it universalized what the seriously ill want or need, trivializing the experience of some, while ennobling the experience of others—just like both Bill and Emma Keller did with Lisa Bonchek Adams. Maybe Feiler didn’t like hearing people say that they would “pray for him,” but other people might find comfort in it.
My father wrote this comment:
“My view, living alone, and not at the moment in imminent danger of demise, is much more one of welcoming visits, comments, suggestions, anything in the way of conversation. The human touch has never been more important to me than it is now. I want it all the time, until such time, if ever, that I can’t stand it anymore, and then I’ll let the people know I’ve had enough in a nice grateful way.
I don’t impugn people’s motives for saying they pray for me, or want to offer to help somehow, or offer reassurance or funny cures. Why not? What harm can any of that cause, and if it makes the person feel good and useful and less uncomfortable about being around a sick person, so much the better. I’m sure I might be nervous and anxious and upset being around me. So piling on all these Don’ts would just make me more nervous.
When people come over to visit me, or call me, I have a feeling I talk their ear off, to the point where they are looking for a way out. They might have visited thinking I’d be in bed or plugged into something or groaning or half asleep. Whereas the truth is, I prepare for their visit by resting and sprucing my bad self up to look and feel as good as I can for their visit, because I treasure it so. Sure, then I hear the phrase, just as the author and others always get, You look good! Well, thanks, friend, I’m trying not to look like I’m dying. We both know I am, but what’s the sense in advertising it?
The one thing I agree with him about is his last DO point: saying I love you. Can’t say it enough, can’t hear it enough.”
He died two weeks later. He was 59. Every single word he wrote is special to me, and to all those who loved him. Every single word that Lisa Bonchek Adams writes is special to those who love her, to those whom she’s inspired, and—most importantly—those words are important to her or she wouldn’t be writing them. It is no one’s place—least of all Bill and Emma Keller, who seem to have almost deliberately misrepresented Bonchek Adams’s situation—to tell someone how to die, to tell someone that there is something noble about being silent. Whether or not someone chooses to go gently into that good night is his or her own choice, and Lisa Bonchek Adams is living her life, and using her voice, to keep some light alive.
If you’d like to contact the public editor at the New York Times to voice any concerns you might have about Bill Keller’s column, you can tweet Margaret Sullivan @sulliview
Follow Kristin Iversen on twitter @kmiversen