We recently spoke with Katy Butler about her New York Times Magazine piece, “What Broke My Father’s Heart,” our latest Notable Narrative. Butler, whose work has appeared in magazines such as The New Yorker, Mother Jones and The Village Voice, currently teaches memoir writing at California’s Esalen Institute. Her account of the difference between the end-of-life care received by each of her parents weaves one family’s story into the larger issues resulting from medical advances. In these excerpts from our talk, she discusses reader comments, pulling off a story in which things go from bad to worse, and engaging readers in the lives of the elderly, who seem to have “lost their civil rights in our hearts and our minds.”

Your mother died almost a year ago. Did you know right away that you wanted to write about your two parents’ very different deaths?

I had a gut sense that something was wrong with the medical system within a year or two of my father getting the pacemaker, back when my parents were still alive. I first wrote a query to The New York Times Magazine about it right before an ASJA conference that Connie Hale organized at UC Berkeley. It was called “East Meets West” and was an opportunity to get together with these editors from important magazines.

I had a 15-minute pitch and a page-and-a-half query, and really, it went absolutely nowhere. I think events had not unraveled as fully as they needed to for a story to be done, and also that I had not produced a good enough query yet, one where I really showed that this was more than just my family’s story or something interesting about a pacemaker – that this was about a large social context, that baby boomers are entering the stage of their lives when their parents are dying, that this is a live issue for everyone.

So then my father died, and I wrote another query to the Magazine, and this was a more fully researched query. In fact, I had read a Nieman Foundation book, I think it’s called “Telling True Stories,” and there was a piece in it by Cynthia Gorney about her travails and progress through her first New York Times Magazine piece. I actually read that and got a lot of hints from it about how to write a good query and how to approach a story like this.

My first drafts are usually too long and have a little bit of everything but the kitchen sink. I had great editing from Ilena Silverman, who is their medical editor. She was one of the three best editors I’ve ever had in my life and had one great suggestion. I had done all this research about cardiology and different kinds of medical devices. As usual, I had strayed off the farm and done way too much research, and I wanted to put it all in the story. She said, “You should only include research at points where it is directly germane to your father’s story. And anything that is not directly germane to him should be left out.” For instance, I’d done a lot of research about cardiac defibrillators, which are extremely problematic at the end of life  –  even more so than pacemakers. Even though it was a good story, it wasn’t this story.

You teach memoir at the Esalen Institute in California. Obviously, this piece wasn’t straight memoir –

There’s a lot of reporting in there, which I think is the best way to do memoir. It gives you a backbone and makes it clear to you that the story is not just about you. From the very beginning I knew that I wanted to understand what was really going on in the medical system that was creating a problem like the one we went through. It’s easy to be sentimental or too lyrical about your own personal experience. I feel when I do this broken-line structure where I’m zigzagging back and forth between a very personal story and the larger social context, it kind of keeps me honest and it means the story has more impact, because people understand how it relates to them or to a bigger picture.

Someone said, “For good stories, you have good writing, you have a good subject, and you also have some relationship to the universal human condition.” With this story, you have the personal writing, and then you also have the fact that this is part of a current social trend, which is that we have very advanced medical technology now, and we haven’t really caught up ethically or wisdom-wise with how to use it. Beyond that you have the absolute universals that your parents die, people die, and we all grapple with that one way or another, whether we have a problem with the medical system or not.

But there’s also the issue of craft – and structure.

I was hoping to ask you about that next.

My personal style is probably different and less efficient than a lot of writers. I start by writing scenes – kind of swatches – that are gripping and powerful to me, or where I went through some kind of inner change.

For example, the story that this piece begins with of my mother and I sitting and having tea and her talking to me about turning the pacemaker off. That was a very gripping experience for me when it happened, and I almost immediately wrote about it in a journal – just that scene. I wrote other scenes in the course of all these events that in the end didn’t end up in the story, but they were gripping at the time. So I felt like I had some fabric to work with when I started thinking of structure, narrative, and where the piece was going to go.

And of course, just writing the query is very, very helpful in that process – it really helps you think it through. But for me, I have to begin in this very idiosyncratic way of writing scenes where I don’t know if they’re doing to show up in print or not. Personally I think if you outline too early, and you follow a boilerplate template too soon, you run the risk of not being able to go to unexpected places, more soulful places in your own psyche that may be different than where you predicted a piece was going to go.

There are a lot of ways of approaching it, and some people are much more focused about their outline, but the things that people remember are these scenes that you’re talking about.

I have to be in a somewhat of a “don’t know” state – I don’t know exactly where the story is going to go, what really matters. I did know in the course of writing it that I was terribly afraid that people would see my mother and me as these selfish, heartless people who wanted to euthanize my father. I was very afraid of that, but knew I had to write the truth as much as I could about her experience and my experience and his experience and keep my fingers crossed that people would understand. And in the end, on the whole, they did.

I just think that these scenes keep you close to the bone truth of things.

What about the structure itself?

I decided to start with my mother saying, “Please help me get Jeff’s pacemaker turned off,” because I wanted to start in a place where people would want to know what happened next and how we had gotten to where we were. But I was afraid of it.

I had a writing teacher – he was a detective novelist – who once said, “Start your story as late in the action as possible and end it as soon as possible.” I added a kind of a coda to that, which is start the action as late as possible but not too late. It’s terrible if you begin a story at an absolute screaming emotional high point, because people haven’t met you as the narrator or met the characters yet. It’s kind of like if you’re at a party, and there’s someone who’s all – she’s got her hair piled on her head and she’s loud and singing. Sometimes you can be repulsed and be pushed away because it’s too dramatic a moment. You don’t want to meet the characters at a moment of climax; you want to meet before the moment of climax.

I started at this moment, but then I was immediately worried that you’d hear this woman saying, “Let’s get this pacemaker turned off,” and be horrified. So I had to immediately do a mini-flashback that would introduce my parents before all this horror had taken place, and say very bluntly that my parents loved each other, and I loved them. Which is not the kind of sentence that comes easy to me as a writer. I like to do everything by implication and indirection, but in this story, I felt like I had to talk immediately and very directly to the reader, almost like an aside in a play.

Then I have those two little mini-scenes where you get a sense of who my father was before anything horrible had happened to him and at least some sense of my mother as well. So it’s a pretty complicated structure.

In some ways it’s chronological, but there are all these loops.

Exactly. My first conception was that I knew I wanted to do this kind of broken-line structure where we would have some personal story and then we would go to the bigger social-political-economic context. We would move back and forth between these two, because I felt that there were emotional stories out there about parental death and unplugging people, and they don’t address the social context. And then there were incredibly well-written books, really researched books on medical over-treatment and the structure of health care, but those tend to be very policy-oriented and don’t have strong narratives that carry through a whole book. They may have a little mini-anecdote, but there’s a huge difference between an anecdotal lede and a story, a narrative that carries all the way through a piece. The impact is very different.

It was a challenge to keep the narrative thread forward-moving and at the same time fill in all this stuff. You can’t introduce a reader to someone with dementia. People glaze over; it’s repellent. It’s almost like once people get that old, they lose their civil rights in our hearts and our minds, and we can’t quite relate to them. My parents had to become real people before all this decline and difficulty.

And that becomes one of the narrative arcs of the piece, which is that you’re going down a staircase, in a way. You are watching decline. It’s kind of like a Greek tragedy: something bad happens, and then something worse happens.

The challenge was to keep the reader reading when there’s a downward arc in the narrative and things keep getting worse. There also had to be this counter-narrative within it, which is that the reader is becoming more and more informed, or less and less innocent, about the health care system. And my mother is also becoming in some ways a stronger and more articulate person, because we have her journal, we have the things she did to keep herself sane, and we have her becoming more blunt and more empowered more willing to speak her truth as time goes on. And of course there’s her death itself.

It’s a funny kind of thing to say your mother’s death is the up point of the story. But I got emails from elderly people in their 70s and 80s who said that the story had given them courage and heart, and they were now willing to discuss their end-of-life desires with their children.

Even though that final description is of a death, it’s in some ways very encouraging to people, and I think for the sake of the story, the fact that she did die really allowed the reader to experience another way that death can occur. It’s funny, we have an ambivalent relationship to death. We don’t want to think about it at all, but on the other hand, it’s gripping and interesting. There was a way for the reader to see another path and see somebody triumphing in their final days. We can’t prevent death, but my mother triumphed in the sense that she regained control of her own life and death. I’m in awe of her; I have so much respect for what she did, even though I miss her a lot. I feel she really had extraordinary courage, and she gained that courage in part because of what she saw my father go through, so it was hard-won wisdom and courage, but it was extraordinary. Therefore the story isn’t a downer, even though it could be.

I was reading through the comments and found what you often get with powerful medical narratives, which is a lot of personal responses. But the way in which they elucidated your own argument, or the way in which some doctors came back and explained why they held your cardiologist’s beliefs – I felt they made the story richer.

I did, too. I just sat down with my partner, and we read through them together. He was saying, “These are so thoughtful. They are not just ‘this story moved me.’” I thought they were amazing. Of course I saw some elements that the story didn’t address, such as doctors’ genuine fear, which I really understand, that if you don’t know what page all the family members are on, this is a very delicate business. In the case of the surgeon and my father’s cardiologist, they were meeting the standard of care. The standard of care is that you protect people from sudden death, you protect them from risk when you do a surgery. You don’t take an unnecessary risk.

Everything could not be in the article. I did a huge amount of research and talked to numerous bioethicists who didn’t end up in the piece at all and heard a lot about how doctors are afraid of the somewhat-estranged son who flies in from Peoria who hasn’t seen the parent or the aunt in 10 years and now wants absolutely everything to be done. They have to somehow read the family, and frankly I think they don’t nearly get nearly enough continuing education on these kinds of discussions. For pacemakers and defibrillators, the average patient is in their mid-70s and has one or two other chronic, incurable conditions, So the kind of conversation you need to have is so different from if you’re talking with an otherwise healthy 50-year-old with a somewhat problematic heartbeat.

I don’t think they’re trained. I don’t think they have the education. There should be videos on the Internet that say, “This is how to have a quality of life discussion with someone who is 79 and has had a stroke and is mute and is considering whether or not to put in a device that’s going to last 10 years.”

So, I think the comments brought out a great deal of nuance that the story itself could not cover. I was surprised by the number of doctors who emailed The New York Times or me personally and were really in accord with the piece or very distressed by what they see in their profession.

Is there anything people wouldn’t know from reading the piece that you’d like to say?

I knew I was exposing myself when I wrote it, and I knew I was at risk of people misunderstanding, but the one comment that did hurt was, “If only you and your brothers had done more to look after your parents, they wouldn’t’ have been in such desperate straits.” I think none of us do enough, frankly. I can certainly look back and say, “I didn’t do enough, and I wish I’d done more.” But I did do a lot. It’s not in the story, and it was an intentional editorial choice. This was about my parents; it wasn’t about what a hero I was. That’s the one thing that does hurt a little bit, but on the other hand, I really don’t think it belonged in the story. The story was about them.

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