How to Write the Book You Want to Read with Joanne Tubbs Kelly

JOANNE TUBBS KELLY KNOW a lot about writing the book she wanted to read. When her husband became so ill that he wanted to take advantage of Colorado’s End-of-Life Options Act, she went to the bookstore in search of help for them both. She could not find such a book, so she went home and undertook the remarkable assignment of writing one. Listen in, and read along as we discuss how to write the book you want to read.

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Marion: Today, my guest is writer Joanne Tubbs Kelly. Her book, Walking Him Home: Helping My Husband Die With Dignity, is just out from She Writes Press. It’s her first book. Welcome, Joanne.

Joanne: Thank you very much for having me today, Marion.

Marion: I’m delighted to have you, and I want to start off by helping people find you. You use all three names, Joanne Tubbs Kelly. Why is that?

Joanne: Well, actually, there are a couple reasons, but the most important one is that there is another person named Joanne Kelly spelled exactly the way my Joanne Kelly is spelled, who’s a Canadian actress. So, if you were to google Joanne Kelly, you wouldn’t find me. You would find the Canadian actress. Tubbs is my maiden name. As a matter of fact, my father, Fred Tubbs, lived right down the street from your studio in Delmar. I’m hoping that people in Delmar and other places where the Tubbs name is known will recognize me and decide to read my book.

Marion: Oh, that’s great. I have three names too. So, I love the fact that you do as well. When I did first google Joanne Kelly, I came up with a Canadian actress. So, I figured we’d start there. But let’s set this up in terms of your story. Let’s set it up for my listeners who are writers. You marry in midlife. You live happily until at 69, your husband, Alan, is diagnosed with a rare, fatal, neurodegenerative illness and he becomes disabled and dependent on others and increasingly unable to find joy in life. He decides he wants to end his suffering, and Colorado has a medical aid-in-dying law and he chooses to use it. You chose to write about one of the most difficult as well as pressing issues of our time, death with dignity. But I have to assume this is a book that you never wanted to write. My audience is writers. Let’s start with the decision to write. How did that come about?

Joanne: I do have some background in writing, but I’d never written a book before. But for most of my career, I wrote marketing materials for high tech companies. My specialty was selling oscilloscopes for Hewlett Packard Company, but it’s a completely different kind of writing than writing a memoir. It’s still telling a story. You’re still telling a story about oscilloscopes or you’re telling a story about your husband dying, and they are such different animals.

I started taking notes when Alan got sick because his illness was quite rare. He had multiple system atrophy and the incidence is something like two people per 100,000 per year. So, it’s not a commonly understood illness. I thought, “Well, you know what? It couldn’t hurt to have notes.” Then I joined a writing group and every two weeks, it was my turn to present 10 pages. So, I started writing little vignettes about Alan and what we were going through, and that’s really what formed the basis of the story was these vignettes that I wrote as I went along.

It was partly because I wanted to write a book about my husband’s illness, but that was in the background. For me, writing really helps me understand and process what I’m going through, and I needed to write about it to make sense of it because this was a man that I loved dearly and to lose him after what felt to me like a fairly short marriage was just devastating. Alan didn’t want me to talk about his illness. He didn’t want people to think of him as disabled, or he didn’t want pity I think is the best way to put it.

But, how I process is either by writing or by talking to my friends, and he didn’t want me talking about it because he just wanted to keep this information private for a very long time. So, I really had no choice. I had to write, and I figured as long as I was at it, I might as well figure out how to do it well. That’s why I joined the writing group.

Marion: That’s wonderful that the writing group allowed you that processing. One of the adages we hear in the publishing world is write the book you want to read, and I think I’ve never seen a better example of that than this.

Joanne: Oh, absolutely.

Marion: I know that when you went to find a book about what you’re going through, you couldn’t find one. You have in your promotional material a lovely declaration that you say, “When I’m faced with a new situation, I usually look for books that will show me how others have navigated the particular challenge I’m facing.” You came up empty-handed. So, talk about knowing that, that you needed to write the book you wanted to read. I think we say it, but I don’t think we understand the job.

Joanne: Well, it felt like a huge job to me. There was one memoir that I found about medical aid-in-dying, about a person using medical aid-in-dying, but it was written by the mother of a young lady. Brittany Maynard was a very attractive, very well-spoken young woman who had a brain tumor and had to move from California to Oregon in order to end her suffering. I was really glad to have that little piece, but that wasn’t what I was looking for. What I really wanted was the story of a husband and a wife, because I think the issues are different when it’s a mother and a child than it is with a husband and wife because the mother didn’t live with the child for the last 10 years of her life because she was married, that kind of thing.

But, I lived with Alan day in and day out and I was faced with a very hands-on caregiving every single day. It just felt like, “What on earth? Why can’t I find a book?” I wasn’t even looking for answers. What I was looking for is what are the right questions I should be asking myself at this point in time? That’s what I didn’t find, and that’s why I felt so compelled to just lay the groundwork for other people who’re also a husband and wife team. Anybody with a loved one, whether you have the official marriage certificate or not, if you love someone and live with them day in and day out, how do you navigate their decision to die? It wasn’t easy. I struggled through it, and that’s really what the book is about is my struggle to come to terms with it.

Marion: Yeah. In fact, that struggle really becomes another character in the book, the acceptance. It’s fascinating to me. It’s like there’s three of you in this story, and I found that to be really compelling. I mean, point of view in a tale is always hard to determine. I work with a lot of writers as a coach and an editor, and I always begin the conversation by asking, “Who’s writing this book?” I think they think I’ve lost my mind when I ask that because they always answer, “Me?” What I’m trying to teach them in an exchange is to realize there are many me’s in this life, the you from before, the you now, and that point of view and voice are a decision that you not only get to make but you have to make early in the writing process. But you were confronted by this very persistent reluctance to support your husband’s desire to die on his own terms and it’s more like that reluctance is, as I said, its own character in the book.

Joanne: Interesting.

Marion: Yeah, talk to us about how to report and write about the change of mind you had on this enormous topic, the then and the now.

Joanne: Colorado voters in 2016, we had a ballot initiative and that allowed us to say yay or nay on the issue of, should we have a medical aid-in-dying law, or it’s actually called End-of-Life Options Act in Colorado. Alan had said for as long as… I mean, from the first few weeks that I met him that we treat our pets better than we treat our elders. And so, I knew full well that he would support the ballot initiative. This is the early days of my process of coming to terms with it was just deciding, “Yeah, I support this. People shouldn’t have to suffer at the end of life. I can support that.” So, both of us voted in favor of the ballot initiative and it passed. And so in December, I believe it was late December 2016, it became possible for people to legally end their lives.

There are a variety of criteria they need to meet from you have to have a fatal illness, the doctors have to believe you have six months or less to live. You have to be able to ingest the medication yourself, et cetera. So, the first step was, “Yeah, I support this in general.” And then, there was another whole time of being unclear after 2016 when I knew Alan was really sick, and I suspected that he had a fatal illness, just because I’m a Googler and I go online and I’ve gotten really good at Googling symptoms and coming up with a conclusion. I’m not always right, but I’m usually pretty darn close. So, there was that period of uncertainty, and then the period that began with his official diagnosis was in 2017 which was our 20th wedding anniversary.

I mean, it was days before our anniversary or days after our anniversary, I guess, when he was officially diagnosed. And then, it was a different struggle after that. The struggle was, “Oh my Lord, can I support not just the law, but my husband himself in his process of choosing to use medical aid-in-dying?” That was what I really struggled with because I was fine with everybody in the entire state, or for that matter, everybody in the entire country, having the choice, being able to choose to end their suffering. But I did not approve of it for my husband. If I could have taken my vote back at that point in time, I would’ve, because it never occurred to me that he would use it at such a young age. It was really, the decision process morphed over time. Did that answer your question?

Marion: Yeah, it does and you report on it beautifully. I think that it’s really worth explaining to the listeners that today, more than 72 million people live in jurisdictions that allow medical aid-in-dying and more states are introducing legislation every year. Yet, I asked a bunch of people if they knew the difference between euthanasia assisted suicide and medical aid-in-dying and nobody did. To further complicate your assignment in this book, explaining that to us sits firmly with you, and we think of this as advocacy. This is advocacy journalism, to no small degree.

There are very few books, if ever, if any, on this topic. We’ve got one or two about going to Switzerland, but this is different. This is here in the United States, and it casts you in this advocacy role, meaning, it’s your job to explain to us the difference between euthanasia assisted suicide and medical aid-in-dying. You choose to do so by nesting the distinction and the definitions of each in a confrontation you have with a doctor where you lose your temper, staging it so we can witness how difficult it is to get anyone to understand, because in this case, it’s a physician who keeps insisting on calling your husband’s choice assisted suicide. So-

Joanne: Yeah, that really annoyed me.

Marion: Yeah, it comes right off the page. The book was hot as I was reading that scene. So, it’s a whopper of an assignment you took on. You’ve got this advocacy role, but staging it in that powerful scene allows us to see the frustration. Had you tried writing it differently and then eventually decided on the doctor confrontation to do it?

Joanne: Oh, no.

Marion: Yeah, talk to me about that decision.

Joanne: Okay. I was so annoyed with that doctor. It shows. I knew that that scene needed to go in the book. Then using that scene to explain the difference, it just rolled off my tongue, my pen, my computer, naturally as a place to make that explanation. What I got some coaching on from a friend who read my book is, “It’s okay to tell them that you wished he spilled coffee in his lap. You don’t have to pretend that you were more grown up.” And so, once I felt like I had permission, then oh, it was so easy to write that scene.

Marion: Well, that’s really generous of you because that’s the kind of call I get, that’s the kind of emails I take all day long from writers. “What do I do with this scene? Can I call the doctor out on his bad behavior?” “Yes, it’s true. Put it in the book.” So, I love the fact that you got permission from someone. I’m sorry we have to ask permission, but I’m so grateful that you can get it and that you then followed up with it. But, that’s generous of you because I think a lot of writers need to turn to somebody and say, “Can I do this?” The fact is, you can, and it works fabulously because if that physician continues to use this phrase right in your face, we see how unknown this phrase is and how misunderstood it is as well.

Joanne: Indeed.

Marion: Whenever I have a memoir writer on the podcast, I always ask them the same question. So, let me ask you this. What are we asking a memoir writer to do when we ask her to report on a past trauma? Are we asking her to relive it? Reanimate it? Reexamine it? Reimagine it? What do you think that assignment is when we go back? People say, “Oh, I don’t really want to go back there, but I want to write this book.” So, what is the assignment? Let’s give these writers some confidence about what they’re doing when they go back and have a look at something that was truly traumatic.

Joanne: That’s a toughie. What I think is that my assignment was to tell Alan’s story and to tell it well and tell it in a way that people will want to read it because I think it’s an important story and I think it needs to be told. So, I’m not sure this is a direct answer to your question, but I know what my assignment was. I’m very clear about that. I think that when you are clear about what your assignment is, it’s a whole lot easier to write.

Marion: Yes. No, that’s the perfect answer. I get that. You gave yourself an assignment and you met that assignment. And so, it’s not going back and reliving it necessarily. It’s you went and got his story, and his story illuminates for us so much of the conflict with medicine in this country, so much with the conflict of death at this time. Yet you can be absolutely, positively in the voting booth for this, but when it comes to transact this, your resistance is just beautifully displayed. So, I think it is his story and as I said before, there’s three of you in this piece, you and him, and your reluctance. When you did go back and have a look, you said before that taking notes really helped you, that writing gave you some clarity. But what about the process of going back and writing? What did it do for the reality of living past this experience? What did it allow you after you had finished?

Joanne: That’s a great question. I was really surprised. I was very aware that while I was writing after he died, he died right before COVID hit. So, I had a whole year where I had relatively few interruptions. I got to grieve at my own pace. People weren’t knocking on my door. I know my friends were concerned, but I just told them all I was grateful for the solitude. Because I’m an introvert, I think people understood that. But what writing this book did for me that I didn’t realize right away was it kept Alan really close to my heart because I was reliving our conversations in my mind and I was reliving him teaching me how to bait the mousetraps.

I was reliving all of the little things that make life so juicy. It was when I had to turn my manuscript over to my publisher that I actually fell apart because first of all, I didn’t have a focus for all of my time. All of a sudden, what I had been working on for years was taken away from me is what it felt like. But much more importantly, I let go of holding Alan so close in my heart. That’s when all my grief really just poured out was when I turned my book over to the publisher.

Marion: Oh, that’s incredibly generous of you. Thank you. I think it’ll be so helpful to people. I think people have very distinct preconceptions of the process of writing. Where the grief jumps in when it enters is a very distinct moment and I can relate to that absolutely with some of the things that I’ve written. Thank you for that. That’s lovely.

Let’s talk about book structure for a minute. You opened the book with the scene of Alan taking the cocktail of drugs into his hands to drink it and die, a choice I want to dig into a bit. Was that your first opening scene or did you write others and then decide on that? How did you come to that remarkable scene?

Joanne: In my first draft, my shitty draft, as other writers-

Joanne: Yeah, sometimes calls it. I started with the scene where we’re at the drugstore buying Depends for the first time and how confusing and funny that experience was. And then, I had my draft workshopped by Pam Houston and that was invaluable. That was really a wonderful experience. But the feedback that I got from the other memoirists in the group is, “You need to show us Alan as a happy, whole person before you show us Alan buying Depends. We need to fall in love with him just like you did.”

Marion: Yes.

Joanne: And so at that point in time, I added on the first 20, 30 pages about our marriage and getting to know him and how he hired me. All of that information-

Marion: Yes.

Joanne: Came in the second draft. And then when I read it, I said, “This is not where this story starts. I need people to know right upfront what this book is about because I don’t want to lose them on my way to his death. On the very first page, they need to know that Alan had made the decision to end his life.” That’s when I added the opening that’s in there now.

Marion: It’s wonderfully done and I appreciate that answer very much, the writing group, the decision to move that forward. You create a gap is what I refer to it when I work with writers and we say, “How did that come to be that he’s here taking this cocktail into his hands?” And then, you jump back and you show us, as you just said, meeting and marrying and falling in love and brief mentions of your prior marriages. We get it and we see why you love him, and we do fall in love with him.

Once you create a gap for a reader between who you were and who you are, or between who you are and who you were, the reader can only get hooked and say, “Huh, how did we ever get to this place? Oh, my goodness.” You mentioned your humor, and so as we start to wrap this up, I want to talk about your humor because this is about the last place in the world we expect to find humor. But humor is a wonderful skillset and you have it in your pocket and you use it on the page. You’re funny about things that are not by nature funny, medicine, bodily function, incontinence, and even death. So, speak to us-

Joanne: Oh, thank you. I take that as such a compliment because-

Marion: It’s meant to be.

Joanne: In our relationship, Alan was the funny one. I was the straight guy. And so, I never thought of myself as being funny.

Marion: Oh, you’re damn funny.

Joanne: But, I think I learned some of my funny skills from him.

Marion: Well, we can thank him for that, but I want to thank you directly because I want to know how hard or easy it was for you to bring humor to a book that covers helping one’s husband die.

Joanne: Well, I wanted to bring Alan’s humor because that was such a part of him. So, it was not hard to bring Alan’s humor. I think my humor is more subtle maybe than Alan’s, at least in the world, but nonetheless, I think that there are a lot of people in this world who may appreciate the quieter form of funny that I added to the story. I didn’t intentionally say, “Oh, I’m going to write a book that’s funny about death.” This is just who Alan was and it’s who I am, and that’s what came out.

Marion: Did you have any discomfort around it, when you’re going to buy the diapers for the Mexico vacation and you’re going to buy the adult diapers? When you’re reconstructing that scene, did you say, “Oh, maybe I shouldn’t be funny here,” or it’s just the way it happened? Did you just-

Joanne: It’s just the way it happened, yeah.

Marion: It is a wonderful scene and it helps the reader enormously to understand the marriage, the give and take, the hope, because I think humor has so much hope in it, and the acceptance that you bring to this. It’s a beautiful book and I’m deeply grateful for it. I guess we’ll leave it here at this question, but do you think of yourself now as an advocate? Is that a comfort that you’re able to employ or embody at this point? It seems like a heavy assignment, but it seems to me that that’s what we’re asking of you at this point is to get out there and explain this to us how medical aid-in-dying is available. Do you think that you’re now a writer-turned-advocate or advocate-turned-writer, or how do you think of yourself?

Joanne: I had been thinking of myself as an advocate until a friend, a woman who has dealt with a lot of hospice issues and grief issues, pointed out to me that I’m really not an advocate for example. I’m not out there trying to convince everybody to use medical aid-in-dying, because it’s only applicable to a very small subset of the whole population. But what I really am is an activist, and I really appreciate her pointing this out to me. I have a story to tell and I tell it with a fair amount of humor, a fair amount of grace, a fair amount of whatever. But that’s what I have to offer the world.

So, I really think of myself more as an activist and an advocate for Alan and not for medical aid-in-dying in general. Now, if you ask me how did writing this book, how did going through this experience with Alan change my views, I definitely am totally in favor of medical aid-in-dying, and I think that everybody should have the right to make that choice. Maybe, that makes me an advocate, but it’s really not how I view my role in the world.

Marion: It’s a wonderful distinction and I’m so glad that you walked us through that because I think that’s it. How can we advocate for this? We don’t want it to be necessary, but we do want dignity. I think a lot of people get thrust into roles, and this will help them as they’re writing memoir to understand that they can say, “I’m an activist, but I’m not advocating for that,” because that’s a tough diagnosis to take with a tough decision to make at the end of one’s life and I wish nobody had to make it. So, it’s very helpful. Thank you, Joanne. I’m so grateful to have you here, and I wish you all the best with your beautiful book. Go sell a billion copies of it, please.

Joanne: Thank you very much. That would be lovely. It would be.

Marion: The writer is Joanne Tubbs Kelly. Her book is Walking Him Home: Helping My Husband Die With Dignity. See more on her at joanne tubbs kelly dot com. I’m Marion Roach Smith and you’ve been listening to QWERTY. QWERTY is produced by Overit Studios in Albany, New York. Reach them at overit studios dot com. Our producer is Adam Clairmont. Our assistant is Lorna Bailey. Want more on the art and work of writing? Visit marion roach dot com where I offer online classes in how to write memoir. Thanks for listening. Don’t forget to follow Qwerty wherever you get your podcasts and listen to it wherever you go. If you like what you hear, please leave us a review. It helps others define their way to their writing lives.