Q&A with Tony Stewart
Read Tony’s Q&A at IndieReader
The short answer is, to help other people. But that’s a little misleading. I didn’t set out to write a book for other people, it happened organically.
Carrying the Tiger began as a series of posts on CaringBridge.org that I wrote to keep our friends and family informed about my wife Lynn’s treatment for Stage IV lung cancer. At first the posts were pretty factual, but gradually I began introducing more color: descriptions of the doctors we met, what it felt like to “live with cancer.” Our friends responded with encouragement and support, and this kept us going through very difficult times.
As the years passed the posts became more intimate, but I still wasn’t thinking of this as a book for people I didn’t know.
That changed when the cancer eventually beat the drugs and we decided to start home hospice. Suddenly I was immersed in a deeply spiritual, once-in-a-lifetime process, helping Lynn leave this world with comfort and grace, and I found myself writing a post just about every night. I would wake at 3 AM and sit in the dark telling the story of the day. The words came effortlessly, and they conveyed an emotional truth that was unlike anything I’d written before. It was as if a muse had come to live with me.
By that time I was writing as much for myself as for my friends. Even though the posts mostly didn’t talk about my emotions - they focused on what was happening each day, what Lynn and I said and did - I was processing my feelings by capturing and sharing this intimate experience.
Why did you write Carrying the Tiger?
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Then Lynn died, and I found myself in a sea of grief. I had expected that I would stop writing, but I couldn’t. The writing process had become integral to my healing — and my friends told me repeatedly that reading about the twists and turns of my grief was helping them deal with their own.
It was during this period that I started to think about converting the posts into a book. By now dozens of readers had said that my writing was helping them, which suggested that the story would be useful to others, too. And if I wrote a book about my experience with Lynn, it would be part of her legacy, a way that her life story could help other people. As a grieving husband, this felt very important to me. I wanted to keep her spirit alive by sharing it with the world.
And the best way to do that was to create a book that would resonate with a much larger audience.
How did you come up with the title?
“Carrying the Tiger” is a Tai Chi concept. The tiger represents a serious challenge, and “Carrying the Tiger” refers to a series of moves in which you lift that scary tiger and place it on a distant mountaintop where it won’t seem so threatening. You can do this for yourself, or on behalf of someone else.
Neither Lynn nor I practiced Tai Chi, but a friend sent Lynn an email explaining the concept, and Lynn asked the friend if she would help Lynn carry her tiger, and then whether she could teach Lynn how to carry tigers for herself.
About halfway through writing the book, I realized that “carrying a tiger” is the perfect metaphor for what we faced. The book is in three sections, each corresponding to a different phase of our journey: living with cancer, dying with grace, and finding joy while grieving. Each of these challenges required us to learn how to carry a different tiger. But all the way along, our friends provided insight and encouragement that kept us going. They helped us lift the tiger and put it on that mountaintop so we could do what needed to be done.
Why do you think the book is so unusual?
First, and perhaps most trivially, because I haven’t found another story like it. There are memoirs, like Joan Didion’s The Year of Magical Thinking, that delve deeply into the grieving process, but few that also chart the lifting of that grief, and the complexity of allowing yourself to feel joy again while still grieving. And there are self-help books, many of them quite good, that tell you how to accept grief and make the best of it. But I haven’t found a first-person narrative like mine where you live through the entire experience - from initial diagnosis and treatment until well after Lynn’s death - alongside the narrator, a narrator who doesn’t know what will happen and is simply trying to make the best of each day as it comes.
Also, the hospice chapter seems to me almost magical. The two most meaningful events in life are birth and death, and while our culture rightfully celebrates birth, we rarely talk about how rewarding it can be to help a loved one have a good death. I’ve accompanied several family members during the last days of their lives, but always in a hospital setting, and never for such an extended period of time. In the hospital you are constantly distracted by the machines and the people who attend them. At home, even when there is an aide with you, it is basically you and the dying person — in this case, my wife of 35 years. Our connection was intimate, unmediated, and we grew ever closer even as she lost the ability to communicate with words.
The first half of the book is paced like a thriller, because that’s how it felt at the time, but once we get to hospice it slows down and becomes more thoughtful, and this sets the stage for my descent into shattering grief and the introspection that follows. Then, thankfully, I start to climb out of that grief, and even entertain the possibility of new love, so you get a bit of hope and forward motion to close out the story. I’ve been looking for another memoir that goes on this complete journey, and though there probably is one, I haven’t found it.
What makes this story so special? What makes it universal?
I think those questions are flip sides of the same coin.
On the one hand, everyone’s story is unique, so the events in Carrying the Tiger wouldn’t happen to anyone else. And as far as I know, no one else has written a memoir describing the complete journey in such intimate detail.
But I think that we as readers find meaning, and universality, precisely in that kind of specificity. The more detailed and specific our understanding of someone else’s life, the more we’re able to relate it to our own - sometimes because our life is similar, sometimes because reading about a life quite different from ours makes us better appreciate who we are and what we have. Thus, a detailed memoir like Carrying the Tiger becomes universal precisely because it is so specific.
Many of us have friends or loved ones who’ve had to live with an incurable condition. Many of us have accompanied loved ones as they exited this world, or wished we’d been there for them. And unless we are terribly unlucky, all of us will eventually experience deep grief, possibly many times, and have to find our way back to the possibility of joy.
Carrying the Tiger tries to illuminate each of those transitions in detail. Hopefully that makes it both specific and universal. You could say the same about any good memoir: each enhances your experience of the world, by giving you a window into someone else’s life.
During Lynn’s course of treatment and your interactions with the medical community, what were some of the more frustrating and gratifying experiences?
Our first frustration was the fact that we had to do so much on our own to navigate the healthcare system, despite being connected to very good hospitals. We went to Yale New Haven for guidance, and they offered us a slot in a clinical trial, but when we said we’d rather do it in New York, where we lived, they couldn’t help us sort that out. Then when Lynn got into a clinical trial at Memorial Sloan Kettering here in New York, it came with rules and procedures that made no sense, and caused what felt like unnecessary delays. It took us months to figure out how all the medical people work together, and who we should call to get the best results.
Then came the discovery that even when the treatments are holding down your cancer, you still have to deal with a barrage of side-effects, and with the collateral damage caused by the treatments. Right at the start, Lynn had intensive spinal radiation to kill two tumors that threatened to paralyze her, but this so weakened her spine that within six months some of her vertebrae began to collapse. Then the treatment to shore up these vertebrae, which seemed like a miracle at the time, put pressure on the neighboring vertebrae, causing more damage. For several years each step forward was accompanied by at least a half-step backwards, and some of those complications were themselves life-threatening.
I’d also have to mention Lynn’s delirium, which came on strong during her second major hospitalization and lasted for months afterwards. I’ve since learned that delirium is surprisingly common in situations like Lynn’s, but no one had warned me about it, I was given very little advice for dealing with it, and it terrified both of us. And then, finally, there was Lynn’s stay in a rehab facility while she was still delirious and confined to her room because of a systemic infection. This was a nightmare for both of us, and again, I felt completely blindsided by it. Each medical professional gave us the best advice they could, but none of them was able to pull back and see how all the pieces would fit together. Four years later, when faced with a similar situation, I chose to reject their advice and bring her home with me, though this meant I had to do a lot more work to make the arrangements.
On the flip side, the most gratifying surprise was how warm and caring our doctors turned out to be. We had heard plenty of horror stories about cold and uncaring cancer doctors, but our first oncologist came out from behind his desk and hugged Lynn on the day we met him! Then Dr. Hellmann, who was Lynn’s oncologist for almost seven years, became like a trusted advisor, and when Lynn’s cancer beat the drugs, it was he who suggested that perhaps the time had come to stop fighting and accept home hospice. This was a huge gift.
Similarly, Lynn’s doctors told us, again and again, that the point of all this treatment wasn’t to “cure” her, but rather, to help her live her best life in the time she had left. If we could extend that time, great, but not at the expense of destroying her quality of life. I hadn’t expected that. We began the journey thinking we had to beat the cancer, but they taught us that the more realistic goal for Stage IV cancer is to learn to live with it for as long as possible. Once we internalized that, we were able to relax and enjoy life much more. We stopped trying to “fix” Lynn and instead learned to live well during the time we had. This was another huge gift.
What were some of the biggest challenges in converting the posts into a book?
Probably the biggest challenge was finding the courage to step away from the CaringBridge format, which had served me so well.
I knew from the start that I had written too many posts to include in a book. When I printed out the journal it came to 700 pages! And a lot of the posts were repetitive. After a while all the doctor visits start to blur together, and even the big surgeries follow a similar arc: once you’ve described recovering from one of them, you don’t need to do the same for the second or third.
So my first pass was basically a big edit. I cut the posts down to a few hundred pages, removed two-thirds of the comments, wrote bits of explanatory filler between them, and created a lovely document called “Oh, Dear Life!” (from a comment by Lynn that is quoted in the book). For about two days I thought I had finished. I would publish this, mainly to my friends, and move on to my next project.
But the more I thought about it, the more I felt that there was something special in this material that was obscured rather than helped by telling the story through CaringBridge posts. A stranger wouldn’t get to know us until well into the journey, and by then they would probably have stopped reading. Also, the posts omitted a lot of the most interesting things that happened to us, either due to self-censorship (we didn’t want to burden our friends with all that fear and pain, and the nastier side effects) or because it didn’t occur to me to write about them at the time.
Iteratively, over several drafts, I created the present-tense narrative that you find now. This was tremendously freeing. With each pass I found myself remembering more details, adding vignettes and observations that I hadn’t documented in CaringBridge. The story became more interesting, and I was able to vary its pacing to mirror what happened to us at the time.
The second challenge was owning the fact that this is my story, not Lynn’s. Even though my initial goal was to share her with the world, it’s my memoir, my voice, and therefore at the deepest level it has to be about me.
It took me a long time to get there. For months I clung to the idea that this was the “Lynn Kotula” story, and in early drafts I prioritized her observations over mine. Several readers told me they were confused by this: if this was Lynn’s story, why did it keep going after she died? Shouldn’t everything that followed be in some kind of appendix?
Eventually I internalized that this is indeed my story, though it is also inherently a love story about Lynn’s and my deep devotion to each other. And by owning that fact, I empowered the last quarter of the book, which in some ways is the most unusual part of it.
What lessons can a reader learn from this story?
I’m leery about saying that Carrying the Tiger offers specific “lessons.” I’ve tried to recreate the powerful events that Lynn and I experienced, but the thing is, while you are living through those life-or-death challenges you don’t stop and think, “What’s the lesson here?” You just keep taking the next step. Some of those steps turned out well, others not so well. It’s up to the reader to decide which of them constitute lessons.
But having said that, I guess there are three main points that I’d like to convey.
First, if you tell your friends what’s really happening, they can provide huge amounts of comfort and support. Living with cancer plunges you into stressful, embarrassing and messy situations. I want readers to know that it's all normal. I want to normalize the entire experience so that you aren't burdened with the additional overhead of feeling isolated, alone, embarrassed and even, potentially, ashamed. Hopefully after reading Carrying the Tiger, you will be more willing to share your real feelings and fears, to ask for and accept the help you need.
Second, dying can be a beautiful, spiritual, shared experience; you should embrace it, not fear it. And finally, deep grief is complicated, sneaky and all-consuming, but once you learn to stop fighting and let it inhabit you, it will slowly become your friend.
Are there specific decision-points that you find interesting?
The story is full of interesting decision points, some explicitly described — Should Lynn sign up for the clinical trial? Should she have another Kyphoplasty? — and some of them more implicit. Each reader will have their own ideas about which of our decisions were more meaningful or better relate to their life. I don’t want to prejudge that for you. What I most want is for you to encounter them in real time, as we did, watch over our shoulders while we make our choices, and then see how each choice played out for us.
There is one decision, though, that hangs over the entire story: how do you know when it’s time to stop treatment and let nature take its course? Lynn and I wrestled with the question several times, but it turned out that when the time came, we almost couldn’t do it. The drive to keep treating, keep trying to live, is very strong, even when all the evidence suggests that it’s time to stop. I’ve tried to show how hard that decision was for us, the almost impossible difficulty of deciding to let your loved one die, so that readers will be more prepared if they confront a similar situation — even if they end up making a different choice.
