From the very beginning, I didn’t want to have anything to do with this book. I remember when my dad first brought it up, in the spring of my senior year at Carleton. He sent out an e-mail to my mom, Michael, and me addressed “Dear fellow authors.” That was a real turn-off. I was less than excited when I got his follow-up call.
“Did you get my e-mail?” he asked eagerly.
“Yes, Dad I got the e-mail.”
“I have five reasons why I don’t want to be involved,” I said. (Even though I hadn’t even bothered to get back to him yet, I had thought out my response enough to have numbered my reasons.)
“One, I don’t want to write a book or any part of a book. Two, if I were to write a book, I would not want to write down my feelings about your cancer; I’d rather write some badass sci-fi book. Three, if I did write about my feelings, I wouldn’t want them to be edited, because I hate being edited. Four, I definitely don’t want my feelings being published for the world to see. Five, I really don’t have time. And the idea of using my free time to write this book is just ridiculous.”
After reading two of my dad’s three books, I knew that this was going to be all about getting in touch with feelings. I’d also read an article my dad wrote in a psychology journal about his illness that included Michael’s letter to him. I thought it was really good. It made me cry. But
that didn’t mean we should go and write a book about my dad’s illness. Just because it’s unusual for a family to write a book together doesn’t mean it’s a good idea. Actually, it probably means it’s a down right bad idea—and that’s why no one has done it.
“Wow. That’s pretty persuasive,” Dad said when I was done.
“I know what you’re going to say,” I went on before he could say anything else. “‘Do it as a favor to me, be part of the team,’ and all that shit.”
“Well . . .”
“Yeah, and then you’re going to say that you’re the ‘sick dude’ and then I’m going to feel bad. But, by my calculations, I have five reasons why I’m not going to do it, and you only have one reason why I should. So I win.”
“Sam, I’m going to do this whether or not you’re involved,” Dad said once I’d finished talking. “I really don’t want to pressure you here, and you do have five very good reasons. But I worry that you may regret not being in on this, later on.”
The gravity of what he was saying hit me. For a split second, I thought of the implications if I didn’t do it; Dad might not be living next year. Instead of dwelling on that thought, I just conceded the point.
“Fine. I’ll do it. I gotta get to class.”
Now, three years later, there is a part of me that still wishes I hadn’t let him talk me into it. But I also have a definite sense of accomplishment. It’s no secret that I’m not good at having or meeting goals, that I’m not terribly motivated. Still, I was able to write one-fourth of a book. That’s pretty cool. But what a process it has been!
I don’t like to talk about my feelings the way my family does. The past three years have seemed like one long “check-in.” And I’m not really a writer. I was a math major in college and now I’m a bartender. Just the act of putting words on the page has been a challenge. Most of all, I really hate editing and rewriting, and that’s all that happens when writing a book. I can barely remember writing the first draft. Maybe twelve words from it made it into the book.
But I did it. We did it. We laughed and cried. We had a shouting match or two. We struggled together through the many drafts, edits, and rewrites. And, amazingly, writing this book has brought us closer together in ways I can’t even name.
I didn’t let myself worry about Dad’s cancer when he was first diagnosed. I was too afraid to deal with it myself. Writing the book about it has been an intense second round, with all of us sharing our perspectives of that traumatic year. Now in the safety of Dad’s good health, I can actually let myself experience the scarier parts of my dad’s illness. Participating in the book has been like being given Cliffs Notes on how to deal with what happened. It’s a good start for me.
Although the focus of this book was always our family’s response to my father’s battle with cancer, the book also covers the most dramatic and uncertain time in my personal life: my change in careers and the pain of my relationship with Anna. Combined, these experiences all provided me with a taste of how harsh life can be and how important it was for me to reconsider some of my priorities. In many ways, I feel that the year chronicled in this book marks my true entrance into adulthood.
One of the things that I believe our family’s story highlights is that real change in perspective—the ability to fully appreciate the things most dear—rarely takes the form of grand epiphanies. Instead, the change comes in small, hard-fought moments of recognition. I’ve certainly had plenty of my own.
When we began, I was most concerned about the potentially hurtful things that each of us might reveal to other family members. Surprisingly, such moments came up rarely and were readily resolved when they did. Unexpectedly, the fiercest arguments we had were our recollections of events—not just the bare facts, but the emotional tone of an encounter or conversation. For me, this book has been a constant reminder of how every moment contains multiple points of view, each one of which are true, no matter how contradictory.
Ultimately, the best part of writing this book has been reading each other’s writing. While I believe that our family knows each other’s lives and stories quite well, we all learned something new through sharing our writing, and it has lead to a deepening in our understanding of each other. For example, I have always known that my dad uses dissociation as a way of coping, and that he frequently responds to stressful situations by putting on a positive front and shutting-down emotionally. I could parrot back the psychobabble from an early age; the psychologically sophisticated language that I grew up using often gave the appearance of a deeper appreciation for experiences than I really had, like a man well-versed in music theory who has never actually heard a Beethoven symphony. But I didn’t have a truly concrete idea of how my dad really felt. Similarly, my mother’s grief following the loss of her father is something I have known since I was a little boy, but my more recent appreciation of how that grief affected me is something that came directly out of conversations Mom and I had while working on the book.
I wouldn’t recommend that every family try and write a book together. I tend to agree with my brother that our family is probably a little hyper-reflective, to say the least, and that going through this process certainly isn’t for everyone. But I do think that however one might choose to do it, searching out one’s own story and sharing it with the people you love can be incredibly powerful and healing. Thank you for letting me share my story with you, too.
To be honest, I did not want to write this book when David first began talking about it in the spring of 2006. It seemed an impossible task. First, I couldn’t imagine adding this to my work life. But much more importantly, it seemed like a tremendous invasion of my privacy. I grew up with the notion that “a lady is in the press three times: when she is born, when she marries, and when she dies.” This venture would definitely exceed those guidelines.
David has always been comfortable using personal stories in his teaching of therapists. He has had years of confirmation from colleagues about how valuable his own stories are and how much they resonate with the struggles that so many face. I have not had this experience in quite the same way. Although I have shared my experiences of being a physician with medical students and have had students tell me how meaningful they were, this book would entail sharing on an entirely different level.
David’s main motivation for writing the book was to give us a template for how we might talk together while he was ill and grieve together if he died. In a way, it would be his gift to us. He also, of course, hoped it would be helpful to other families who are facing these kinds of difficult circumstances. Though I’d initially resisted, his argument won me over in the end. And frankly, there was a part of me that did not think David would survive to write it.
It was almost six months after we agreed to write this book that we sat down as a family for the first time to share what each of us had written. We gathered in our family room, all of us with laptops perched in front of us, and took turns reading out loud our first chapters.
Perhaps because I had no real expectations for our little writing group, I was not even remotely prepared for the intimacy it engendered. I would have said we were already a close family, but the act of reading aloud to each other our internal experiences was something quite different. It led to conversations about what we had each been going through that might never have otherwise have happened. After Sam read about how he’d cried alone in his bed in the middle of the night, I asked him why he hadn’t come and woken me up so he wouldn’t have been so alone. He said he didn’t want to upset me. This led to a conversation about how it would have helped me to have been able to help him and that talking about hard feelings wasn’t the problem—it was not talking about them that was so much harder. These kinds of conversations were invaluable, given the even tougher road we knew might lie ahead.
As the book progressed, we got together sporadically to read each other’s chapters. Every time, I saw how much we had grown both individually and together. I was surprised by how well we worked and how little we argued over material. It was an extraordinary experience to work with my children and husband in this way. Most of the time, I would have to say it was fun to work together despite the often hard nature of what we were writing about.
By the end of this process, something had happened. I think that both my sons, admittedly now grown men, had moved into a somewhat different relationship with us. We had worked in collaboration with each other. We had been able to hear one another’s thoughts and feelings and, as a result, been able to see each other as people, separate from our roles as parents and children.
Writing about David’s illness and about the events of my youth also helped me personally to understand how much those earlier life experiences had shaped my life and my response to David’s illness. I came to understand more fully the flow of sadness that had suffused my internal adult life. Even though on the surface I was an engaged, often happy and playful parent, my children felt this undercurrent, particularly Michael. I feel more keenly than ever the truth of William Faulkner’s words, “The past is never dead. It’s not even past.” I’d never realized quite how much it all impacted me.
It is my fervent hope that this book will do at least a fraction for our readers what it has done for me and my family. I am very aware that our story is not typical. My access to medical information and to doctors made this a very different experience for us than for those who feel that they are alone in this journey or who lack a good relationship to the doctors caring for them. In this, I know how fortunate we were. But I hope this book will provide something useful for families who are going through a life-threatening health crisis.
I do not think the book is a road map of how to travel through a difficult illness, as I do not think there is such a thing. Each person’s experience is so profoundly unique. But perhaps it is enough to know one is not alone. In the end, we are simply giving our story to you to use it as you will. I hope it helps in some small way.
Living with cancer is like sailing in the fog. There’s no distant horizon, just an enveloping, thick, wet shroud of gray. You plot your course in small increments so you don’t get lost. At any moment when you catch a glimpse of a navigational aid like a bell buoy or whistle, you carefully log your location, compass course, and your distances and times in a log book. This traditional navigational technique is called dead reckoning. For my family, our book was a kind of sailing log: our record of marks made and milestones passed during that relentless year.
I had the idea for this book after I published a short article in 2005 in the Psychotherapy Networker, a trade journal. It was a piece about being a therapist dealing with my own illness, and it featured Michael’s remarkable letter to me. To my surprise, people all over the world responded with genuine appreciation for me sharing my story as well as Michael’s letter. People seemed to value our candor and vulnerability as well as the opportunity to hear both our perspectives, so I began to think: Why not a book where all four of us chronicled our experiences? Had that ever been done before by a family?
Over the next few weeks, as the idea grew in my mind, I became certain that working together in such an intense and intimate way might help us hold on to each other and truly face my illness and our experience of it together—no matter what happened. Naturally, my family was less than enthused by this idea. Sam was most outspokenly opposed, but Kate came a strong second. She couldn’t imagine finding the time to write the book, and the idea of publishing our intimate personal story of our fight with cancer seemed inappropriate and intrusive to her. Michael, who had already been given very positive feedback from our article, had reservations, but was at least slightly intrigued.
However, despite their misgivings, Michael, Sam, and Kate all eventually rallied to the idea. Their willingness to participate in this endeavor has been truly extraordinary and loving gift. I know they did it for me.
We started writing in the spring of 2006, when it was still highly likely that I would have a recurrence and then bone marrow treatment. We chose to chronicle one year because many big events were coming up, like Sam’s graduation, Michael’s move to Nashville, Kate teaching her new course at the medical school, and the first anniversary of my cancer. And I could be relatively confident that I would complete the year.
Of course there were many starts and stops, but everyone finally settled in to the writing. Despite his stated resistance to the idea, Sam wrote fast and furiously. Kate and Michael had little time to work on it, but then would put in intense bursts of effort that created surprisingly good first drafts. Everyone learned to accept and even trust the editing process.
None of us knew that this writing project would be such a profoundly emotional experience and be a catalyst for fundamentally changing our relationships to ourselves and each other.
I remember the first time we read our writings to each other. It was Christmastime in 2006. We were sitting in our living room in front of a toasty fire. The usual teasing banter was going on, but I was very anxious. I had been reading what the others had written as they sent material to me, but this was the first time the four of us would dare share with each other.
“Well, this is so dumb, I might as well get it over with,” offered Sam who, despite his loud protestations had already written much more than any of us. Sam began, and, by the time, we got to Kate forty minutes later, a profound hush had fallen upon us. There was not sound in the room but the crackling of the fire and the reader’s voice. Kate read about her fears of the boys living without a father like she had. She started weeping and then all of us did.
I looked at my dear Kate and my beloved sons. I knew that, even if I didn’t make it, they would find a way of finishing this book. It would be one of the ways they would hold onto each other.
I have always known that Kate is the love of my life and an extraordinary doctor. But in this crisis, she had the exquisite ability to be there for me both as my nurturing wife while also applying all of her medical knowledge to ensuring that I had extraordinary care and that I could simply trust that everything that could be done was being done. I could not have gone through this without her or without the loving support of Michael and Sam.
And yet, through the writing process, I realized that Kate’s grief over the loss of her father and my anxiety from mine had shaped the development of our family and been a burden for our boys. Certainly, my anxiety and efforts to “help” my sons were clearly relentless and frequently undermining. This project has led me to finally recognize my boys’ manhood and embrace them and their choices for who they are as opposed to what I think they should be. I love them with an unbridled passion and now it’s time to really let them go.
Truly embracing those I love for who they are and recognizing that I can’t protect them from their own struggles has been one of the most important lessons I’ve learned from my illness. I hope this book will help you view the different members of your family as well as yourself—with all of your rough edges and idiosyncrasies—with profound tenderness and compassion.
Some time ago, Kate gave me a framed quote for Christmas. It was by Philo of Alexandria.
For everyone you meet
Is fighting a great battle.
I keep it on my desk. I’ve spent my life working with families in crisis, and I think I have been a good therapist. But now, having gone through our experience as a family, I think of all the families I have ever treated and suddenly realize how little I knew.
We are all fighting a great battle.