Ben Yalom on Narrative Therapy, Theater, and Writing with my Father

An Intellectual Heir to my Father?

Lawrence Rubin: I’m here today with Ben Yalom psychotherapist, theater-maker, and author. His book, Hour of the Heart, which he wrote along with his father, Irvin Yalom, explores the complexities of human relationships and personal transformation based on one-hour consultations between the senior Yalom and his clients. In addition to his therapeutic work, Ben is the founder and artistic director emeritus of fools FURY Theater Company in San Francisco, where he directed numerous acclaimed productions.

You’ve now written a book with your father, as his light is fading. I wonder if you consider yourself to be his intellectual heir.


Ben Yalom: I think I am “an” intellectual heir to my father [Irvin Yalom] to the extent that there are some things that I can do that he has done, and others that I can’t. I could never be my father’s full intellectual heir because I would have 40 or 50 years of reading to catch up on first!

But there are many things that we’ve experienced together, beginning when I was growing up. My parents were further along in their careers, and at that point, there was only one of me because my three siblings were already grown. So, I imagine that their dinner table conversations were a little different from the ones I had with my parents, which were definitely weighted towards their interests. So, almost by osmosis, I probably gathered a lot of knowledge in the humanities. I imagine my siblings did as well, but I think I probably was more exposed in many ways. That’s just in my DNA, or what might pass for my foundational upbringing.

I have done some thinking lately because I’m working on some essays and a book proposal, on what it would mean to sort of take up the mantle of some of my father’s and my mother’s intellectual work and writings. As I say, I don’t think I can ever really be my father’s heir or equal in the sense of having that deep wealth of knowledge about philosophy and therapy and the humanities that went into his writing.

But another very important aspect of his writing that resonates with therapists and students of therapy is that he’s extremely open and honest about himself and his flaws, as well as in the sharing of his ideas. And those are things I very much can do in my writing. In that regard I think I can deliver on his way of being and his way of sharing and his way of teaching.

I’ve certainly reached a place in my life which is quite relevant to the book we just completed, Hour of the Heart. I’ve reached a place in my life where I’m very willing to be quite transparent about most things in my life with my readers and with people who come to ask me for help, I am already finding that this is helpful, much in the way that my father describes in his work. One other aspect that I’m trying to bring into my work, both as a writer and a therapist, is my background in theater.

While that background and foundation does not come from mountains of books that I have not read, I do have something analogous to that in my 25 years in making theater. Particularly in doing types of theater that are deeply engaged in mining the richness of the actors’ lives, rather than the psychology of characters that comes from a script written by someone else. My experience in theater centers around working with peoples’ experiences and psychologies and stories, and in understanding how the body can be used along with the connections between the bodies and emotions in storytelling for character development.

This knowledge is quite real and substantive and can be very powerful for a lot of people. It has taken me some time to understand how to use it therapeutically. I’ve been trying to find my way to weaving these things together in a deep and compelling way to help people, and I’m now starting to see real results, which is exciting.


LR: You’re speaking of the FoolsFURY Theater Company. What was your role in it?
BY: I founded and led the company for most of its existence. I first went to the Iowa Writers Workshop for graduate school, to write fiction. But when I got out, I learned very quickly that I didn’t like sitting alone in a room writing. And all along I’d had a parallel passion which was doing theater.

But I found that I was not that interested, or satisfied, by the theater I was seeing produced. Even in a pretty interesting and experimental place like San Francisco, much of the mainstream work was very traditional American theater. That is, a script was given, people performed on a stage, and it was almost like in many ways, putting a movie on the stage. That’s a vast oversimplification, but to some extent it’s true.

I became really interested in ideas and concepts that could be expressed in metaphor and movement, and that tackled deep themes. I was much less interested in realism. What I really wanted to explore was “What could be unique about the experience of live theater?” which was completely different from trying to put realism on stage. So, I started exploring and meeting people in theater companies in the Bay area, trying to get them to hire me to direct plays. But I found quite quickly that people were interested in working with me, but nobody was going to hand over the keys of their theater company to let me create my sort of experimental vision. Finally, my mentor came to me and said, “Okay, well, I guess that means it’s time for you to start your own company.” So, I started a company to produce one play at the time, and when it came time to actually put it on stage, I was told I needed to have a company name.

You asked earlier about the name foolsFURY. I dreamt this up as a collision of fool – our absurd and comic human position in the universe – and fury at the injustices we do to one another. I meant only to do one or two plays in order to put my name on the map. Then it became a 20-year endeavor, because we got to do the things that I wanted to do artistically that nobody else was ever going to hire us to do––to raise complex questions and be deeply curious. It was a place of experimentation and research, and ultimately a place where we hosted many other companies and nurtured their creative visions, all working in this sort of space between somebody delivering a script versus the actors and the designers and the directors creating original plays.

What I wanted was people who could do powerful realist scenes but also explode the stage, do everything that was possible to create an experience that one had to be involved with live, and that could mean the type of immersive theater that we’re seeing very strongly now, 25 years later. It might mean acrobatics. It might mean dance. It might mean breaking out of realism into some sort of crazy imagination, stylized work, and then back into realism.

At the time, most of American theater, and definitely most of the mainstream theater that was happening in the Bay Area, as well as what all the major conservatories were teaching, were variations on realist acting and was psychologically driven from the top down. I had to become an expert in things that moved from the outside to enter the bottom up; start with the body, get to the mind as opposed to starting with the mind and getting to the body. So, my expertise is very much in a number of contemporary forms that are bodily-oriented, driven by impulses in the body, or understanding a feeling in the body and how that might come out, or how a certain use of the body might generate an emotion as opposed to the inverse.


Beyond Thought and Language

LR: How have you made the transition from the theater to the therapy space?
BY: I am trying to bring this “bottom up” orientation into some of my therapeutic work. This means developing ways of getting people to find or explore—if we think about Narrative Therapy—stories of self, not verbally, but through exercises that are more physically oriented. And my feeling is that one of the challenges of traditional talk therapy is that it’s so talk heavy; this works really well for some people, but not for others. The discursive, rational language that we use isn’t the easiest way for some clients to explore themselves, or to express what they find when they do. So, I’m trying to build some tools that go with narrative and existential therapies, but which help people explore and express themselves in a less language-centered way.

LR: It’s interesting that we started the conversation around the question of whether you are ‘the’ or ‘an’ intellectual heir to your parents’ careers, particularly your father’s and specifically with regard to therapy and your understanding of the human condition. But it sounds like your work in the theater, and how you’re integrating it into therapy is almost anti-intellectual or contra intellectualism.

BY: I’m not going to disagree, but I’d say it’s more a different angle than an anti-intellectual one. The first thing that comes to mind when I’m asked about my theory of change is that peoples’ living understanding of what is meaningful for them is critical. That might look like identifying their “quest in life” or their search for meaning in the universe, and then living in ways that are more aligned with those meanings or ethics. To me, that’s a very existentialist approach through which I’m saying, “What do you find truly important in your life at a deep level?” This is inherent in my father’s work, but I don’t know that all people can answer that solely through thought and language. I think meaning exists within the framework of all the other existential questions, but I don’t think that peoples’ understanding of what is meaningful for them is always easy to articulate verbally.

LR: How do you use movement or poetry or other experiential types of explorations to help your clients make sense of some of the larger existential questions?

BY: I’m doing it based on many, many years of experience with certain theatrical forms. I also have a great network of mentors that I’ve met over the decades that have guided me in explorations or exercises that allow people to go to deeper places within themselves both individually or within a group. Often, they come out with words on the other end, but the theatrical and dramatic and dance work is usually inspired by the internal work they’ve done or are doing.

Over the decades I’ve watched some of the best theater makers and dance makers I know do this kind of deep work, and I’m constantly reminded how powerful their experiences have been. My goal has been to use these highly developed skills and expertise to help therapy clients reach those deeper, meaningful places within themselves, and between themselves and others.

An Embodied, Experiential Journey

LR: Can you give me an example of a client who you helped to bridge that divide between word and experience?

BY: Right now I’m doing this work in groups. Maybe someday we’ll get to a point where I’ll bring it into individual sessions.

One person I was working with lived with a great deal of shame. She was a Middle Eastern woman battling the shaming cultural practices that came from being a woman and from her parents. Her constant pattern in life was to hide from her parents and then dig her way out and do the things that her parents then disapproved of. None of them were particularly bad things, but those things didn’t fit the culture.

Sometimes before group sessions, I will do what I call a “mission interview.” This is a format Tom Carlson, Garret Rutz, and I are working on which is basically a very short, intense, Narrative Therapy-based re-authoring exercise, in which I would say something like, “How did you decide that you wanted to become a therapist?” or, “Can you tell me a story about a moment where you made that decision by going down one path?” or, “What were the things you were fighting against in your life that then led you to take up the mantle of fighting against that?” The mission that she developed, should she become a therapist, was to provide a place where people could come to put down their shame and be treated with love, and that she would be the person to greet them with love and offer them a place of safety. So essentially, what I created in that hour for her was the opportunity to think about a story about where she came from, the practices she was up against in her life, what she was doing to combat those practices, and the solution or power or passion that she pursued to fight against those shame-inducing practices.

She understood the mission you jointly articulated for her, at which point I said something like, “We can do this verbally, or we can do it non-verbally where you can get into their body.” She picked, and we continued working together. I offered her some guidance, asking “As you reflect on what you’re really up against in your life, see what that feels like in your body? What is the power, the thing that’s driven you to keep fighting on it against this?” So, we work either way. We identify where they came from, what her big challenges in life are, and hopefully determine what are the strengths and skills or hopes and dreams that she has to fight against this.

Okay, that’s the conceptual background. Then I’ll get them into their bodies and teach them quickly what it is to make a gesture, because it’s the smallest building block of a dance. That seems to be much easier for people to instead of me saying, “go make a dance,” which can be very intimidating. For example , I can say, “Larry, make three gestures, and then let’s put them together.” You just created a little dance!

So then we’d do an exercise where they really get into a meditative space where they spend about 15 minutes just letting their body move, really articulating it and that becomes a bit of a meditation in its own right. I’ll ask them to follow one part of their body which may have begun as an impulse, and I ask them to start paying attention, trying to let their mind and body work together. At that point, I start to bring in the image of the thing that they’re up against in their life. I’ll ask, “How does that feel when you bring that into your story, into your body? Where does it go?” Usually, they’ll go on a little internal journey that’s physical and emotional.

From there, I’ll ask them to bring in the thing that they use to fight against that or to overcome that which takes the meditation in a different direction. I might ask them to just notice at some point and pull a couple of gestures that come up out of those two sides—the thing they’re up against and how they stand up to it. So here they are building a little vocabulary of movement related to their specific stories

Two more steps! They can then do something that’s called a “container exercise” where I ask them what it feels like if they’re inside a container or something that’s holding them in and feeling what that’s like. At some point I’ll say, “I want you to start finding your way out using your specific strengths and skills. And then go back into the container and force your way out again. Then I might say, “The thing that you identified as your challenge in life is that container…that’s the thing that’s forcing you when you go through that…so, how do you use your skills to get out and what does it feel like to get out?” They do it over and over again, and I ask them what they learned from that experience. (And just to note the lineage here, this is a modification of an exercise I learned from the brilliant teacher Steven Wangh, and which he in turn modified from work with the great Polish theater maker and theoretician Jerzy Grotowski.)

I ask them to focus on any gestures or thoughts or words that came out of that such as poetic or metaphorical words or sounds. Next, I might say, “I want you to start on one side of the room in your ‘up against’ state, or the place where you’re fighting against or being contained, and then to move to the other side of the room using all of these gestures that we’ve created, and while going from there to there, somewhere in the middle, there’s going to be a transition, (which in narrative terms is like an agentive turn) where you shift into taking control of this thing. Sometimes people have to go back and forth—but eventually we help them move through to this side. And so they’re getting a very embodied, experiential sense of this inner journey, This is the bottom-up process!

Writing with My Father

LR: I always considered traditional Narrative Therapy to be a very literary, intellectual type of clinical venture, but it sounds like your orientation is to the non-literary or anti-literary, sort of in the way that your divergence from your father’s work led you to an anti-intellectual, experiential place.

BY: One of the things that I saw in Narrative Therapy, at least in the readings, were ideas about ritual ceremonies. Those really caught my attention,. And now, in addition to traditional sessions, I do these experiential exercises in group format that can run six-hours long, and even multiple day intensives.

LR: So, because of your background in theater, interest in Narrative Therapy, and willingness to depart from the written word, you’re no longer committed to that traditional template of one-hour talk therapy. It’s interesting, however, that you just finished co-authoring a book with your father called, Hour of the Heart, where the explicit purpose was to highlight his commitment to continuing his therapeutic career in the shadow of some limitations by offering one-hour sessions with people around the world. Can you share what that experience was like for you?

BY: Strangely, not difficult because my understanding of therapy goes way back to my first exposure through my father’s vision, our dinner table conversations, and later his writings, particularly Love’s Executioner. I read those stories in draft and gave him feedback on those. I did the same on pretty much every book after that so I understood his thinking about therapy and his desire to make a literary form that incorporated therapy, and featured the clinician reflecting on his own thought process and the therapeutic encounter. So, my formation was not only as a therapist but as a writer.


LR: So, it was a natural progression for you?


BY: We had worked together in the past. I had edited a book called The Yalom Reader years ago which was the first big omnibus of his work. In more recent years, I had given very significant feedback on a number of his books.

I did, however, decide that it was just too demanding for both of us to work together until the mountain of stories for Hour of the Heart grew and his memory began to decay. Eventually the manuscript grew to be between 45 or 50 stories, and it was too challenging for him to put them side by side while holding onto the threads that were going on between them.

Some of the stories were sort of repetitive of one another. It’s not because he wasn’t interested in the process or fully invested in each one of those stories, but because he had forgotten what he had written. For example, story 40 may have covered some of the themes already covered in story number 12. At a certain point, we agreed that in order to help him pull it all together, he needed somebody to work with who knew him well enough, knew his way of writing well enough, felt confident enough, and had enough of his confidence to really revise and rewrite. So that’s the work that I undertook.
Embodied writing


LR: From a Narrative Therapy perspective, what do you think your dad values in you that led him to invite you into this project, even though you have a challenging history of working with him.
BY: That’s an excellent Narrative Therapy question. I can only speculate. I think we have a pretty powerful bond and it’s different for all the children. But I am the one who was most engaged in writing. As I went through grad school and after, when I wrote plays and some fiction, I certainly always shared my work with him, and we would discuss it. Likewise, he would share his work with me, and we would discuss that.

We’re certainly not the same writer, and we have different strengths. I found at some point in my 30’s by the time I had children, that it wasn’t always easy for us to collaborate because he is an anxious, and often impatient, person. And for me, working with an anxious collaborator who would often send me a draft, and then call the very next morning saying , “Do you have the edits yet? was challenging. I would come back with “I have it, I haven’t read it yet, I’m trying to get it!” I had three kids to get off to school and whatnot. While we eventually decided not to write together often, we did co-author a column for Inc. magazine for a year, and I’ve edited chapters of many of his books.

But I understood his work well enough to be able to try to write like him in a way, and not to stick things into the stories that sounded out of place. That might have come from my way of thinking but at the same time, we had spoken enough about therapy over the years that I think there was a lot of trust there as well.

It really helped that I had turned the page in my life and decided to pick up the family business and had started my education as a therapist and started seeing clients. So, the questions I was asking were really informed by some experience, as opposed to purely from the writer’s perspective. The other aspect is that I had suffered with depression back in my 20s and 30s, and we had very long talks about that. And similarly, he has had periods of anxiety, and particularly in the years since my mother died. And we had some very long talks about that. So, I think there was a certain amount of trust in one another. And for him, in my psychological acuity and compassion.


Lessons Learned

LR: In his words, “fellow travelers.” Did the nature of your collaborative efforts change from the beginning to the end of the project?

BY: Absolutely it did, and it was really interesting. At the beginning of the book, I would say my father was more concerned about me being interested in doing this, but little by little, he gave me more rope, if you will. I would bring back suggestions that he liked, and he became more and more willing to trust me as a writer. At the same time, I think there was the process of him becoming a little bit less invested in the book, or a little less interested in the book, as time went on because with his clock ticking, and realizing that he doesn’t have that much time left on the planet, there were other things he wanted to be doing and paying attention to.

Those two things allowed him to give me more and more freedom. We also moved from really looking at pages together at the beginning, to more of my doing the work and coming back to him in a Zoom session and saying, “Hey, I’ve got some questions about therapy for you.”

After a certain point, which was quite a bit later, he couldn’t even really remember the individual stories. And sometimes he would reread a story and then we’d talk about it, but often it would be me. I might say, “I’ve written the story. I feel good about it, but I’m not sure about this particular therapeutic dialog in here or this intervention here.” So, I would go back to him and say something like, “Hey, is this something you would say or does this feel right?” I might ask him to imagine he was in this situation with a client, so he didn’t have to remember all the details of the particular interaction in the story.

For instance, if one of the stories was about suicidal ideation, I would ask him how he would address that. It got to a point where what we were having was almost supervision conversations where I was saying, “Does this feel like the right therapeutic move?” and he would say, “Yeah, that that would be good,” or “Here’s a problem with that approach.”

LR: Your father has written and worked around death, dying, grief, and, of course, he lost his wife, your mother, just a few years ago, and now his memory is diminished. What have you learned as a person, as a therapist, and as an author, about death, dying, and mortality that you want to bring into your own life, as well as your therapeutic work? You know, staring at your own sun.

BY: Yeah, it’s been really powerful. Thank you for asking that. I can’t separate it from my particular stage in life. These things are definitely affecting me as a 56-year-old man with young kids. There’s been a certain awakening on my part to the time that I have left. But I’m not coming from zero because I’ve always been having these existential thoughts, because they were part of the air I breathed as a child where the idea of how we confront death was always a common topic around the table.

So, I think now it has made me look at my life, my kids, and my wife and thinking, yeah, I have X amount of time, and I really want to make the most of it. So that is helping me say “no” to things in a way that I probably didn’t before, and also say “yes” to other things and to other people and their needs, in ways that maybe I didn’t before. I think it has helped me in my mission to be a kinder person. Because we all have frailty.

It’s been difficult watching my father diminish to the extent that he has, not only because he’s my father, and that I think it’s difficult for anyone, but also because there’s this the air of the great man being diminished. Because I’m in the field, and because I’m managing his Facebook page, I’m constantly responding to people about the emotional impact on them of his decline. Everybody wants a little piece of him and wants him to know that they wish him well.

That this book itself deals with the aging question and the memory question means that these were very direct topics of conversation for us. We were often looking specifically at, “What it’s like for you to be having these memories slip away?” And “Sometimes we disagree about something that happened in your past.” But then we can’t just sort of let it go sometimes because it’s actually relevant to the story that we’re writing, so we had to stay with those things that were uncomfortable, linger over them together, and decide how to address them, both in life, and in our writing.

LR: We started the conversation around the issue of whether you are your father’s intellectual heir. But as we move to the very end of the conversation, I see you as more of the existential heir. Would this book be one that beginning clinicians could pick up?

BY: I took on the mission of making this an accessible book to a broad range of readers. I think many of his central therapeutic ideas are laid out well enough that one could pick this up as their first book during training. My guess, however, and given that most people who are beginning their journeys as therapists are much younger, is that some of the questions about aging which do make up a lot of this book, are probably not as relevant. I think picking up the Gift of Therapy or one of the books of stories is probably a better place to start. But I don’t think you would go wrong if you began with this one.

LR: I agree, Ben, and on that note, I’ll say thanks for this deep and powerful sharing, and good luck with the book.

BY: Thanks Larry. I enjoyed it as well.

©2025, Psychotherapy.net

References

Yalom, I. & Yalom, B. (2024). Hour of the heart: Connecting in the here and now. Harper Collins.

Yalom, I. (2002). The gift of therapy: An open letter to a new generation of therapists and their patients. Harper Collins.

Shaped by Experience: What a Brain Bleed Taught Me About Therapy, Grief, and Presence

From the Ashes of Crisis

Alone in the ICU, tethered to machines and unable to see my family due to COVID protocols, I realized I was about to learn lessons no textbook could teach. I never imagined that a single medical crisis could teach me more about therapy than years of clinical training––surviving a brain bleed during my final semester of internship turned the ICU into the most intense classroom of my life.

Some nurses became my anchors; others showed me what I never wanted to become. I learned lessons about presence, compassion, and patience that no textbook could offer. My neurosurgeon was like a balm for my fears. Some nurses offered calm steadiness when everything felt terrifying. Others were brusque or cold, teaching me just as powerfully what I want to avoid in my work.

Even months into recovery, lingering symptoms—burning headaches, balance issues, heightened sensitivity—forced me to slow down. I had to set limits. As my internist said bluntly, “Focus on yourself.” This is advice we all need to hear sometimes—especially when life feels overwhelming. That process of slowing became a gift: I learned how to sit fully in stillness, tolerate uncertainty, and meet suffering without rushing to fix it. And humor? It can diffuse suffering. I realized it can be a quiet lifeline, reminding us of our shared humanity even in the darkest moments. The following lessons about presence and patience became especially relevant in my work with clients navigating profound loss.

Sitting with Grief: Aaron’s Story

Aaron came to therapy shortly after losing his partner in a sudden and tragic accident. The shock and anguish he carried were crushing. In the early months, he found ways to honor his partner’s memory through personal rituals that gave him small moments of connection, purpose, and meaning.

I drew on my own experience with vulnerability and life-altering uncertainty to simply sit with him, without judgment or pressure to “fix” his grief. Sometimes, just being present felt like the only thing that mattered. Over time, we explored the idea of growing around grief, which lifted some of the pressure to “get over it” within a certain timeframe—pressure that Aaron sometimes felt from his family, who were anxious for him to move on. Healing, we discovered, doesn’t erase loss—it expands around it, letting life continue alongside the grief.

Slowly, Aaron began to imagine a future where his partner’s memory stayed with him, while leaving room for new relationships, moments of joy, and perhaps one day having children—a future shaped by both love and remembrance.

Shared Vulnerability: Duncan’s Story

Another client, a young adult in their twenties, came to therapy struggling to access emotions after a loved one had died about a year and a half earlier. At first, they couldn’t cry and often felt numb, as if the grief had shut down their ability to feel. Over time, they learned to open to vulnerability, explore deep questions about life, and celebrate meaningful milestones.

Later, a sudden and tragic medical crisis, similar in intensity to my own brain bleed, involving a close family member shook them to the core. Sitting with their grief stirred my own memories of helplessness and survivor guilt. In the past, I might have redirected those feelings in the name of “professionalism,” but now I could simply bear witness—being fully present alongside their suffering.

Silence became a space where emotions could surface. Through that silence, Duncan was able to access feelings that had previously felt blocked. For me, as the therapist, the long bouts of silence were challenging, yet holding that discomfort became part of supporting him. For this client, it allowed grief to breathe, tested trust, and revealed the quiet power of shared human vulnerability. My steady presence, sometimes wordless, reinforced that being truly present can matter more than saying the “right” thing.

Takeaways for Readers

  • Presence is powerful: Sometimes simply being there matters more than advice or solutions.
  • Grief has no timeline: Healing is nonlinear, and growth can happen around, not just after, loss.
  • Shared vulnerability fosters connection: Authentic empathy strengthens bonds, both in therapy and everyday life.
  • Humor can coexist with hardship: A gentle laugh can remind us of resilience and shared humanity.

Just as I learned to sit in the stillness of an ICU room, tethered to machines yet alive, I now witness grief and healing unfold—messy, nonlinear, and profoundly human. In therapy, and in life, the greatest gift we can offer one another is simply to be present.

Therapy, for me, is about ensuring no one feels alone in their suffering. My ICU experience didn’t just shape my approach—it deepened it. I show up with attunement, patience, and care rooted in lived experience, creating space where clients can meet their own pain with courage, curiosity, and even a little laughter.

Standing With Clients in the Twilight of Life

Chris had advanced cancer, and only a short time left to live.

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Connecting at the End of Life

Chris was in his 70s, and he felt full of regret as he approached the end of his life; he felt afraid of dying, and disappointed in himself. He believed he’d damaged and lost all the key relationships in his life — who would want to be near to him now, he wondered?

In the course of our weekly therapy conversations, Chris came to realize ways his selfishness had hurt his personal relationships, and he came to recognize that his supposed preference for a solitary lifestyle had become an excuse or rationalization for his estrangement. He thought, though, that he was now paying too dear a price for his errors: dying alone in a nursing home.

Chris lacked a formal religious faith, yet he had spoken of his vague sense of a life beyond this one, and he expected to again see the loved ones who had already passed away. One morning when I came to his room, Chris was sitting on the edge of his bed crying.

He looked up and said, “Talk to me, Tom, I’m scared.”

I pulled a chair up close and looked at him and spoke quietly.

“Chris, when you first came here, you told me you thought you had wasted your life and burned all your bridges. You thought that you’d made all the wrong choices, and had neglected relationships, and that you would die alone.

“But you have been surprised by so many things that have happened during the past few months. Your son came from the west coast to see you and decided to stay here with you till the end; and you thought you had lost him. You hadn’t spoken with your sister for years, yet she and her husband have become regular visitors to you here.

“Many friends you had long lost touch with have reappeared, and you didn’t know how they found you or learned you were ill. Look around the room, Chris, and see all the gifts and cards and flowers you have received from people you thought would not know or care that you were ill. So many unexpected hands have reached out to you, Chris, to help comfort you as you prepare to move on from this world; you never expected such tenderness and reassurance.

“You have spoken lovingly of your parents and grandparents and aunts and uncles, and how you look forward to seeing them again on the other side. So, here you are Chris, poised between this world and the next. You have been loved by many over the past few months, even when you had believed yourself to be unloved. Many hands have been extended to you in this world to help you on your journey, and you anticipate many hands to greet you when you arrive in the next world.”

His quiet sobbing subsided, and he gave a big sigh and said, “Okay, okay, thanks, I feel better.”

A few days later Chris quietly passed.

Nursing homes, typically less formal than outpatient settings, have been special places for me as a psychotherapist, especially when I encounter people with major or terminal illnesses. I commonly engage in exquisitely poignant therapy conversations about life and coping, and about dying and grieving. Clients facing the end of their lives often feel a need to speak openly about their fears, hopes, doubts, and beliefs. Meeting their needs often involves bold entry into topics sometimes avoided or not considered as part of treatment. But it can be profoundly touching and rewarding to meet clients directly in the midst of their most vulnerable moments.

Questions for Reflection and Discussion

What are your reflections on the type of clinical work this author describes?

In what ways do you embrace or avoid working with the elderly or dying client?

What are some clinical challenges that might accompany working with this population?  

Sasha McAllum Pilkington on Grace and Storytelling at the End of Life

Lawrence Rubin: (LR): Sasha, thanks so much for joining me today. I was drawn to the narrative stories you’ve shared through your hospice work in New Zealand and the incredible way you help the dying and their families. But before we begin, I know you had something you wanted to say about your work with these clients. 
Sasha McAllum Pilkington: (SP): Kia ora, Lawrence. Thank you very much for having me. Tēna koutou katoa. Hello, everybody. My name is Sasha, and I work as a counselor for Harbour Hospice. We provide specialist palliative care for people in the community and have an inpatient unit. I work mainly as a counselor in the community. I just wanted to say that sometimes when I’m talking about practice, I use stories to illustrate what I mean, and I wanted people reading this to know that I do that with the consent of the people that I’m speaking about and with respect to their confidentiality. So, thank you. 

Meaning Making in the Shadow of Death

LR: I'm glad that you started right there, Sasha, because my very first question is, what does your way of co-creating stories with dying clients say about what you believe works in therapy or consultation?
SM: I think being alongside people who are dying, and their loved ones, is very important. When I speak of being “alongside,” I am referring to supporting a person to reflect on their experience and what matters to them in ways where they experience themselves as worthy of respect and holding knowledge about their own life. I think recognizing our shared humanity is significant in working with people who are seriously ill and approaching death. We are all mortal beings with bodies that can become unwell, and we can all suffer. I am no different in this regard from the people whom I meet in my work and keeping that idea forefront in my mind allows me to see the person beyond the illness and whatever changes that imposes. Change is a shared endeavor and, in my view, takes place in the relational space. So, the stories I have co-created with the people I have met show, I hope, a spirit of collaboration and the importance of the therapeutic relationship in generating change. It can be very hard living with a life-ending illness so I hope the writing acknowledges that while showing what might be possible for both the person who is unwell and the therapist.

You might notice that I use some unusual language constructions as we talk. My use of language reflects some particular understandings that I think are important therapeutically. For example, I speak of “the person who is dying” rather than “the dying person” to acknowledge that people are more than the illness they live with. They are more than the problems they live with. As a narrative therapist, I think identity descriptions are important as they influence how we think of ourselves, what we think might be possible for us, and then how we might respond. The identity of “dying person” can limit how the person sees themselves and then influence how they might respond and act.   

LR:
I speak of “the person who is dying” rather than “the dying person” to acknowledge that people are more than the illness they live with
Some might say that hospice work, at the very end of someone's life, either by natural causes or an illness, is the end of a story. But I'm hearing you say something that suggests that the storytelling that you co-create is not simply about an end.
SM: Relationships endure beyond death, don't they? One of the opportunities I get is to talk to people about the kinds of stories that they might like to endure and to meet with families and ask them what kinds of stories they might tell about that person after they have died. This puts me in mind of a family meeting I was part of that took place on a rural property with a farming family. The men were sitting around in their gumboots — big blokes who probably had never spoken to a counselor in their life, let alone been anywhere near one. I was asking the person who was dying how they would like to be remembered, and then the family what stories they'd be telling about their loved one.

At first, the family were shy and hesitant to talk. But as they warmed up, they started to tell some really funny farming stories, which were brilliant. One was about how the man fell out of the tractor and just lay there because he couldn't stand up but had insisted that he go on working. And these men started to laugh as they were sharing these stories from their lives, and then one of them said to me, “Oh, I thought you counselors were meant to make us cry, not laugh.” It was quite delightful. Talking about such stories not only can nurture the relationship with someone after they have died, but they can also make it grow. The written stories we co-create therefore often reflect not just how a person has died but what might endure from the relationship family members have had with them. For example, the published story called “A Small Hope,” which illustrated how a therapeutic conversation brought forward some beautiful memories two young children had of their father, and then how they were developed into legacy stories they could carry with them throughout their lives.   

LR: And perhaps that flies in the face of what the uninitiated believe counseling in hospice to be, which is about sadness, crying, and lamenting. But it sounds like the storytelling that goes on in these last days, or weeks, or months of your clients' lives are not just about sadness and grieving and saying goodbye, but almost like living eulogies.
SM: I think the work really reflects the richness of life and what people have to lose. There are stories of both great sadness and also the savouring of life, and what has been most precious. There is a lot of crying, but there is also a lot of laughter. People walking past my room sometimes wonder what on earth’s going on when they hear all the laughing coming out, and it can change from moment to moment. So, yes, the conversation can reflect what and who has mattered most to a person, the real richness in their life, and ways of living, as well as losses they may be experiencing. 
LR:
I'm always listening for the beauty in people's lives, the stories, the nested stories within whatever we're talking about
Has this particular way of working with the dying and their families over the years changed the way that you ask questions?
SM: Yes, writing collaboratively has changed my questioning. I've been writing therapeutic letters and collaborative notes for decades now and writing stories that illustrate practice over the last 10 years. It has changed both my way of questioning and what I’m listening for, as well.

If I'm looking back on conversations, say, in a transcript, it gives me the chance to really look closely at my questions and to think, “How could I have asked them better? What work is that question doing? Has it been helpful?” That constant examination and thinking about questions has really allowed me to be a lot more intentional and be more skillful in my questioning. At the same time, I think my listening has changed. I'm always listening for the beauty in people's lives, the stories, the nested stories within whatever we're talking about. Just the other night, someone was talking to me about accompanying a family member who was dying and said, “You know, the job of the family is to deeply love,” and it just really struck me. I heard that clearly and in a way, perhaps, that I wouldn't have prior to doing all this writing.  

LR: So, the stories, the notes, that flow from these interviews are, in a sense, love stories, stories of love, and how that's permeated the lives of the dying and their families?
SM: Yes, sometimes. I’m very much listening for expressions of Aristotelian goodness such as love and kindness, compassion, courage, determination, and because I'm listening for it and inquiring into those spaces, it very much comes forth. I was just thinking of your use of love. I mean, it is a form of love, doing this work, I think, isn't it?
LR:
there is an idea that the work is all sad, and what I would say is that it can be both sad and uplifting and enormously meaningful
Well, it certainly is, in my mind, the ultimate act of giving. And if love is defined in part or in whole by giving, then when you are sitting with a dying client and their family, it is, I think, the deepest form of giving. So, yeah, I think it is about love the way you describe it. What have you learned from working with the dying and their families that may encourage others, perhaps those who are sheepish, to venture into this particular domain? 
SM: I really hope that the stories I’ve published will encourage those who are interested in this work, and support them in gaining some confidence and feeling prepared for what they might encounter. I think, as we were saying previously, there is an idea that the work is all sad, and what I would say is that it can be both sad and uplifting and enormously meaningful. This work does require me to be present for suffering and to be able to enter some of the taboo areas of life. But having said that, when people are approaching death, there are also stories of what's been important and what's been good about living, and they can be incredibly rich. For me, I think there's something also about working with problems that can't be solved, that can't be fixed, and being alongside a person and making sense of what's happening… Conversations that generate helpful meaning making, that are transformative perhaps, or reveal the extraordinary in the taken-for-granted. For me, anyway, that's enormously rewarding. 
LR: So, because their futures are so foreshortened and their death is so inevitable, it's not like looking forward to alleviating depression or looking forward to lessening anxiety. It's looking forward to an absolute end and helping them to prepare for that end with the greatest sense of meaning they can.
SM: Yes, indeed. Meaning making is a significant part of the conversation I have with people. Making sense with people about what is currently happening to them as they live with the illness and also reflecting back on their lives. Having a sense of living meaningfully is very important to most people at the end of their lives. Every person's life is different and people bring different things to their dying. However, while our conversations talk about dying and perhaps what they might be afraid of, or what dying means to them, we also talk about living. We may spend time speaking about how they might like to spend the last phase of their life and what is precious to them, for example. 

Narrative Therapy: Discourses Around Death and Dying

LR: Your clinical work is grounded in the Narrative Therapy tradition of Michael White and David Epston, so I’m wondering what are some of the dominant discourses around death and dying that may actually be unhelpful to clinicians working with the dying and their families?
SM: When I first started working in palliative care, I noticed that there were many cultural messages about a “right” way to die and a “right” way to live with an illness that were highly influential in shaping people’s experience of the end of their lives. I learnt that dominant cultural discourses could be helpful for some people whereas for others they positioned them as not getting it right in some way.

One cultural idea that springs to mind is the idea that death is a bad thing to be fought. If you have a curable illness or apply this idea to your experience in particular ways it can be very useful. However, for many people living with an incurable illness, the idea of a fight can start to become unhelpful. It might lead to them fighting the illness at any cost, for example, forgoing quality of life in pursuit of more and more treatments to avoid dying. Or it may position them as either winning or losing a battle, which can be a very unhelpful and limited description for someone who is dying.

Part of my role is to create a space for people to reflect on how they are going about living with the illness and approaching death so they can examine whether they are doing it in ways that fit with their values and what matters to them.

I've illustrated therapeutic conversation with people who have taken up a fighting stance against an illness with different consequences in some of my papers. For example, in the first story that I ever wrote, I met with a man who refused to acknowledge he was dying and was fighting by continuing to work rather than spending time with his family, and that didn't fit with his values. For him, the meaning of fighting his incurable cancer was not abandoning his wife, and he decided to have some enormous experimental surgeries. It was a really important thing for him to do. A fighting stance can work for someone. I can think of another person who had a really traumatic childhood, as did his wife. They had found each other at a young age, and it had been a very happy relationship. And for him, the meaning of fighting his incurable cancer by having some enormous experimental surgery was not abandoning her. It was a really important thing for him to do. The cultural idea of fighting can be both unhelpful and helpful. Dominant ideas aren’t usually good or bad in themselves. However, if they are guiding a person’s life, are unexamined, and don’t fit with their values, they can be problematic. It's more important how particular cultural ideas are applied, the way that they affect people’s relationships with themselves and their experiences, and the meaning they hold as a way of approaching death.   

Another dominant Western idea that can have unintended consequences is the message that we should be positive. In fact, Carla Willig describes the pressure to be positive as a cultural imperative in Western societies. At the end of life, the idea that we must be positive can shut down talk of our mortality and of suffering leaving people alone in their experience. Part of what I do is to listen and be present for stories that are often silenced. They may be experiences of suffering or fears about dying for example. There are few relationships where people can speak of such things. The idea we “must be positive” affects health professionals, family, and friends as well. It may have family members and visitors trying to cheer people up rather than acknowledging what a person is going through. So, at times, it can be a very persuasive and unhelpful idea.  

There are many cultural discourses that can cause people distress when they are approaching death. The idea that relationships end with death, and we have to “move on” rather than that relationships continue beyond death. And then there are some of the individualistic discourses; Western discourses such as “the reason that I've got cancer is because I didn't eat right, exercise enough,” and so on, right? People are often made to feel they are to blame and individually responsible for the bad things that have happened in their lives even when they are societal issues. Those are just a few examples. I find Narrative Therapy helpful in untangling ideas so that the people I meet with can examine them more closely.  

LR:
another dominant Western idea that can have unintended consequences is the message that we should be positive
What is it about Narrative Therapy that helps you to untangle some of those dominant but unhelpful discourses with the dying and their families?
SM: Narrative Therapy has encouraged me to be curious about another person’s world and to use questioning practices to inquire about ideas that a person raises in conversation. This allows the ideas to be brought forward so the person can examine them and reflect on their influence on their life. The dominance of certain discourses or ideas can mean they are taken for granted as “truth” and unexamined. Narrative Therapy has trained me to pull apart the threads of an idea in collaboration with the people I meet with and to look for how that idea impacts on different groups of people with the workings of power in mind.

Hope is an experience that I commonly examine with the people I meet with. Hope can mean many things to many different people, and I can't assume that I know the meaning of it in a particular person’s life. I might ask, “What does hope mean for you?” There’s an example of such a conversation about hope and the questioning I might use in the story “A Small Hope.”

I think Narrative Therapy really lends itself to assisting people at the end of life to reflect on the cultural ideas that are shaping their experience and then choose and think about how they want to go about the end of their lives.   

LR:
Narrative Therapy has encouraged me to be curious about another person’s world and to use questioning practices to inquire about ideas that a person raises in conversation
And that sort of brings us back full circle to our opening when we talked about storytelling, co-creating stories, co-creating notes. You've said in your writing that in working with the dying, you try to bring forward identities other than illness. What did you mean by that?
SM: We're more than the problems that we live with, aren't we? We're more than an illness that we have, but when we're unwell with a serious illness that's perhaps kept us from doing what we normally do over a period of time, the idea of being a sick person, the sick identity, if you will, can really take over. And identities matter. They don't just speak to our past and to who we think of ourselves being, they really influence our decision-making and what we think is possible for us. So, the idea of being a sick person, if it takes over, can be quite limiting in what a person thinks is possible for them, and it can lead to ideas such as a person thinking that they're a burden or that they've got no way of responding to what's going on with them.

I, for instance, can think of a person I saw who didn't feel that his life was worth living because he thought he was a burden to others. When I met him, one of the things I noticed was that despite this man being unused to living with other people and describing himself as a bit of a hermit, the carers kept coming into the room. I asked him about this and the relationships with the carers and discovered he actually learned all about their families and the countries that they'd come from.

I discovered that he was someone who was deeply respectful of others and who was able to get on and make the people around him feel really good about themselves. And through exploring this, we were able to expand his possibilities by bringing forth identities of him as a person whom others liked, as someone who cared about other people and so on. I guess we were able to bring forth a sense of living meaningfully for him. The identity we brought forward of him as someone who could give to others and make them feel valued was really helpful in starting to push the idea that he was a burden out the back door.   

LR: And you wouldn't have known that had you not been at his bedside to actually see the community in action.
SM: Exactly, it was very helpful. In fact, people would be knocking on the door when I'd be seeing him. It was really quite something, and he was very surprised. He hadn't actually noticed how many people liked and cared about him until I began to ask him about all the visitors and what might lead them to want to spend time with him. 
LR: And that's one of the essences of Narrative Therapy, which is looking to take what they call the thin story and add depth and richness. So, I can see how someone approaching the end of life can become overly focused on that singular event, which you, through your storytelling, expand and enrich.
SM: Yes. The idea of a person being just sick or dying is a thin story of who a person is. Bringing forth the depth and richness of who they are can be enormously therapeutic. As I get to know people, I am listening for who and what matters and has mattered to them in their life and how they have gone about their life. As they share these details, I particularly listen for Aristotelian virtues that are expressed in how they have lived. The themes of virtues give rise to the possibility of rich identity descriptions for the person — them being a compassionate or kind person for example. Such identity descriptions are very helpful for someone who is unwell, as it is possible to enact them with a sick body. If someone’s been a great sportsman, that’s not going to be such a useful identity going forward even if it is something pleasurable to remember. Let me share an example of how these rich descriptions of a person can give rise to sometimes transformative responses.

I was once asked to see a man who was living with a number of very serious conditions. He was refusing to speak about his dying even though he was in the last few weeks of his life, and was insisting on having resuscitation even though it would be hopeless and at the same time very traumatic for his family. He was self-medicating to the point where there was real concern that he might accidentally kill himself and wouldn’t discuss his future care needs. It had come to a critical point, especially for his family. When any of our staff tried to speak with them about any of these matters, he became angry. After an incident where he shouted at one of our doctors, I was asked to go out and see him.

I went out and met him and his wife, and as is common practice for me, I began by asking him about himself and his life aside from the illness. As we discussed who and what was important to him, I was listening for Aristotelian virtues that he had expressed in the way he went about his life. I learned that he dearly loved his family. They were incredibly important to him, and he was very concerned about their well-being. I learned that he was a really considerate employer who knew all about the families of his employees. He personally bought them Christmas presents. He was a very kind man. And I also learned, in his early life, that he was a courageous person. He was an adventurer. He had been involved as a bystander in a very violent and frightening incident and had behaved with incredible compassion and courage. So, these are identities that I sought to bring forward through inquiry as I hoped that they might be helpful to him.

After nearly an hour, he said to me suddenly, “Sasha, you've got it.” And I said, “Oh, may I ask what is it that you think I've got?” And he said, “You get why I want to live. You get why I don't want to die. You will be my death philosopher, and I will talk about dying with you.” We were then able to talk about his dying and how resuscitation would be hopeless and traumatic for his family to witness. Remember, family really mattered to him, and that value was very present in the conversation. We were able to talk about his hopes in taking the medication, that it was harmful, and also about what he might want for the end of his life. I don't think it was just that he felt seen and heard, which was so important, but also that he was able to access parts of himself that he needed to have those conversations. The conversation and the two we had following this one allowed us to plan for him to have a dignified peaceful death with his family nurtured as well.  

Building Meaning at the Threshold of Death

LR: Well, it sounds like you're giving these folks an opportunity to contribute to the narrative rather than being a passive recipient of the traditional story of the dying person and giving them a sense of agency, and utility, and value. This makes me wonder, based on something you said in one of your wonderful writings that working with the dying is sacred. What did you mean?
SM: I meant that I think it needs to be revered, that we need to give every respect to the people we're talking to, that I need to give every respect to the person I'm talking to. I'm entering the most tender areas of a person's life. They may not have been able to share their fears, their experience, with anyone prior to that moment, sometimes because they want to protect those they love most, sometimes because it is taboo to go into these territories, and no one has been able to ask or even wonder.

I might be talking with a person about what their fears are about dying. What part of dying are they most frightened of? Just recently, I was talking with someone about her deep shame at the thought of other people seeing her naked body. Another was frightened about incontinence, and how would she maintain her dignity? These people are worthy of my every respect, and when they're able to share some of those fears or losses, it's the gift, and it's a gift to be honored, I think.  

LR:
these people are worthy of my every respect, and when they're able to share some of those fears or losses, it's the gift, and it's a gift to be honored
So, you don't use the word “sacred” necessarily in a spiritual or religious context.
SM: No, I'm using it just in the sense of to be revered but perhaps a bit more than that. The hospice has a Māori name called karohirohi, which means where the light hits the water, the liminal space, the space between living and death, and perhaps there is something about that space that's sacred, something that’s out of the ordinary. It's something to take great care of.
LR: By virtue of it being a liminal space, it is out of the realm of day-to-day experience. It really pushes one to be somewhere they've never been before. And to have the courage to do that, whether we call it heroic or sacred, special, unique — there may simply not be a word — but I do love the word “sacred.” Sasha, can you give an example of having worked with a client who, in spite of your best efforts, was not able to embrace meaning, was not able or even willing to take you up on your invitation to write a story that their survivors could have?
SM: I think you raise an important point. I adjust what I do according to the person or family I am meeting with and what it is that they want and works for them. I don't write stories with everybody as it’s not right for everyone for lots of reasons. I think that there is almost always the possibility for assistance, and supporting people to have a sense of living meaningfully if they are willing to have a conversation. Some people have more to grapple with than others and I may not be the best person for them to talk to. Someone else might be a better fit. I think it is for me to adjust and try and discover what works for each family. People have different ways of approaching death and living with illness. Talking may not be their preferred option or what is best for them. I respect their knowledge of themselves and what they want.  
LR:
I think that there is almost always the possibility for assistance, and supporting people to have a sense of living meaningfully if they are willing to have a conversation
They're very lucky then. What lessons about death and dying have you learned from working with the Māori?
SM: Many. I read Michael White's paper, “Saying Hello,” and learned about the idea of relationships continuing beyond death, but Māori, who are the indigenous people of Aotearoa New Zealand, have held that idea for 1,000 years or more. Māori incorporate their tipuna, their ancestors, into daily rituals. The idea that those who have died are part of our lives is a taken-for-granted idea within their culture and is a powerful example for me.

When I was learning all of this in the ‘80s, family therapy, thinking systemically, wasn't necessarily the usual way of thinking. Whereas, again, for Māori, thinking systemically, meeting as a group and working things out, was, again, a practice that they had done for 1,000 years. And I think the other thing is that the way that they mourn is, in my mind, very enlightened. For example, a tangi or tangihanga, which is a funeral, takes place over days rather than in an hour, giving meaningful time for connecting and expressions of grief. Such a practice has influenced the time my family and many others give to mourning. And I believe that New Zealanders touch their dead more than any other culture in the world, and perhaps this is part of the legacy and influence of Māori. I feel I’ve benefited from the influence of Māori processes.   

Terminally Ill Pediatric Patients and the Grieving Therapist

When asked about the favorite aspect of my (dream) job, I could talk for hours. I feel passionate about working in a pediatric hospital setting with chronically ill children and their families. Each day brings new challenges. I enjoy inpatient and outpatient sessions, parent consultations, family work, collaboration, and advocating for this population any chance I get.

On the contrary, when asked about the least favorite aspect of my job, my response is far less glowing and enthusiastic. I work with children from various departments within the medical center, including oncology, cardiology, trauma, and solid organ transplant. It is inevitable that I encounter children who are terminally ill. I will never understand why children die. Experiencing the death of a child is the most painful part of my job, and it will never make sense to me although logically, I know this happens. On the other hand, I feel honored to be a small part of the most vulnerable time in a family’s life, and to walk alongside them in their journey of grief and loss. Helping a family and their child during end-of-life care is arduous work. It has been impossible for me to not be deeply impacted working in this arena.

I will never forget the first patient with whom I worked that received a terminal diagnosis. I was an intern completing my graduate work. Because I speak Spanish, I was privileged” to work with more challenging cases. I remember sobbing to my mentor at the time, not understanding how a child could die. In response, my mentor neither chastised nor criticized me. She agreed with me and mourned with me. She supported me through that experience and reminds me even to this day that we are human. That support has stuck with me as I continue to mourn the deaths of children with whom I work.

When I was first asked to write a post related to working with terminally ill children and their families, I hesitated, perhaps not wanting to open old wounds and visit the pain that comes with this kind of work. But as I’ve experienced more child deaths over the years, I wanted to share my thoughts and feelings and am humbled to share my stories.

The Dying Child

The dying child has a variety of emotional, physical, and spiritual needs. They have questions and often want information about what is happening to them. The child who is terminal often feels unsafe and understandably anxious. One word I’ve frequently heard, particularly from the parent, is “brave.” In my experience, many parents of terminally ill children find inner strength in the strength of their own children. I remember one child who was aware of her prognosis comforting her parents, reassuring them that she would be “okay.” She arose each morning and worked hard to remain connected with her parents, family, and friends. I also try to remember, even in the face of their strength, that these children are scared. As I have discussed with many families, fear and bravery can, and often do co-exist. For me, bravery is moving forward even in the face of fear.

To Tell or Not to Tell

A glaring ethical question is whether a child should be told they are terminally ill and that they will die. In my experience, many medical providers and members of the psychosocial team believe a child should be informed of the severity of the diagnosis; whereas parents often do not wish for their child to know. Many parents believe children will “give up” if they are aware of the prognosis. To the one, children often know something is very different or not right. They may be confused and desire open communication to understand what is happening within their own bodies. It is my job to provide caregivers with this information and connect them to the Child Life department if they would like guidance regarding how to tell their child. It is not my job, however, to advise them on what to do or impose my own beliefs. The decision is ultimately up to the parents.

The Dying Child’s Family

The families with whom I’ve worked represent a wide range of cultures, faiths, religions, abilities, and beliefs. It has been imperative for me to work with them through a very focused lens of acceptance and understanding of end-of-life issues so that I can be as useful as possible. When learning about a family’s culture, it has been important to know and appreciate the family’s beliefs about the afterlife as this has guided me when discussing their child. Faith can be an important coping skill and protective factor when a family receives news of a terminal diagnosis for their child. However, challenges may arise because of a family’s faith. I have met with Christian caregivers who struggle with the balance of faith and science. Many worry that preparing for end-of-life care, such as transitioning to hospice, considering a DNR, or planning the funeral indicates they are not “good Christians.” Connecting families to spiritual care has been crucial when the family’s faith is important to them.

Families are often faced with challenging decisions regarding end-of-life care. Many parents process these decisions with the child’s therapist. Some parents worry that focusing on the child’s quality of life and reducing seemingly futile treatments will be perceived as “giving up.” I have often worked with caregivers who struggle with the continuation of treatments that are painful, and sometimes even agonizing, for their child. While they want what is best for their child, the decision to extend that child’s life can be tortuous.

Complex and anticipatory grief can make the adjustment to a terminal diagnosis that much more difficult. It is challenging for caregivers to be fully present while still grieving the impending loss of their child. In addition, siblings are often overlooked as a necessity for the dying child’s care. I recall the family of a dying child with whom I facilitated sibling play therapy. My goals during sessions were to connect with each child and help them connect to each other. During those sessions, the child with the terminal illness often felt ill and lethargic. The sibling first requested that the patient play with her in many ways. However, as sessions progressed, the sibling learned to allow her sister to lead. For example, instead of two chefs working at a restaurant, the sibling was the chef who served the tired patron a meal. The ability for families and siblings to find strength to cope always amazes me.

Hope vs. Denial

It is not uncommon for me to receive proclamations from the child’s medical teams that the family is in denial about their child’s diagnosis. I will never forget sitting down with a particular mother to discuss her child and family. She said, “I know what the team thinks. They think I don’t understand what is happening. I understand. I am just choosing to have hope. Hope in a higher power. I know my child’s doctors do not have the last say. I have hope that God will heal my child.” Hope is not denial. Hope is an adaptive and positive coping skill that bolsters a child and family during outstanding hardship.

The Challenges of Working with Dying Children

I was fortunate to be surrounded by deeply empathetic people during my internship, when I first experienced the death of a child patient. Since that time, I have met many medical providers who have been able to build an emotional tolerance for this kind of work out of necessity to care for their patients. I have always been thankful for their skill at addressing the physical and medical needs of these children and their families.

As a therapist, however, my role is to attend to the emotional needs of the family — their strengths and fears along with, of course, their presenting concerns. I have learned the importance of allowing space for all feelings, including my own, when a child’s death is imminent or has occurred. I used to believe I was not able to grieve the loss of a patient. My grief meant nothing compared to the limitless grief of the family, friends, community, and bedside staff. However, I quickly and poignantly came to see the disingenuousness of this belief. I have learned that the only way I can be fully present for the child and their family is by remaining firmly anchored in my own humanity and vulnerability.

I have certainly heard words like compassion fatigue, secondary trauma, contagious emotions, and empathy trauma bandied about, and how any of these experiences can lead to burnout. One extreme challenge I’ve experienced when meeting with a terminally ill child and/or their parents has been the pressure of meeting with a healthier patient immediately afterward. I will never forget receiving news a patient with whom I had worked for years died two minutes before a session with another patient. I still question whether I was able to offer unconditionally positive regard to that second patient as I struggled under the weight of what had happened moments before. Shifting those emotional gears was a challenge.

Over this and related experiences, I have had to learn ways of grieving to avoid burnout. Showing my own humanity and vulnerability within the boundaries of safe relationships and work friendships has made me a better therapist and afforded me an outlet for my own emotions. I remember working with a chronically ill child for over a year who received a terminal diagnosis. As her illness progressed, I transitioned to working with her parents. I learned to never schedule a session with another family or patient directly following these interventions. After these emotionally dense and intense sessions, I would schedule five minutes to cry. I would shut my office door and have a few minutes to allow myself to experience these heavy feelings and an emotional release. I have learned that by allowing myself to grieve, experience, and understand my own humanity, I have become a more empathic person. This has, in turn, allowed me to continue to work with this population and alongside grieving families.

Guilt and Perspective

There are several challenges and, not surprisingly for me, blessings when working with this population. One glaring emotion I often experience is guilt. When leaving the hospital for a vacation or holiday, I must inform the families of newly admitted patients that I will be gone for a few days. Many families say, “Have fun!” or “Merry Christmas!” The typical “you too” does not suffice in this scenario. The extreme guilt I felt as a young therapist was overwhelming. Then, with two healthy pregnancies and subsequent maternity leaves, and now, with two healthy children, I am often surprised by waves of guilt. Over the years, these waves have decreased in size and duration. I know I have a role to fill to support these patients and families, which will be impossible if I continue to focus on the guilt I feel.

On the other hand, I feel deeply grateful to work with these patients and families. Their strength and steadfastness are astounding. In addition, this job fills me with immense amounts of perspective. I recall a mother saying to me, “I don’t know how you do this — choose to come to work with these sick kids every day.” I replied, “I don’t know how you do this — show up for your family every day with vulnerability, strength, and support.”? Small arguments at home or my childrens’ typical tantrums seem so manageable when compared to the hardships families I work with endure. This often leads me back to guilt. It has taken me years to focus on the perspective and honor I feel instead of allowing guilt to overcome me. I realize this helps me be a better therapist for the children and families with whom I work.

Countertransference

Another challenge I’ve encountered when working with this population is countertransference. Loss prompts memories of past losses, with each new one potentially amplifying the pain of those that have come before. This has been extremely challenging for me when working with dying children, especially when I think of my own children. I recall working with a family whose child was nearing the end of her life. The parents and family wanted to make new memories by visiting Disney World, Six Flags, Disney on Ice, and birthday parties. I found myself planning with the parents during parent consultations ways to motivate their child to want to attend these events.

The child wanted none of these outings, instead choosing to remain home and stay close to her parents and siblings. In looking back on that episode, embarrassingly, I wondered if the child was exhibiting depressive symptoms. I naively believed that it would be to everyone’s benefit if she did those things with her family. During a subsequent parent consultation, I suddenly realized I was pushing my own agenda. I mentioned this to parents and that this was not what their dying child wanted. In that moment, I realized the potential power and influence of countertransference when working with dying children and their families. Therapy and supervision are key in instances such as that one.

Boundaries and Self-Care

I’ve always valued the importance and recognized the challenges of maintaining boundaries when working with this population. Our mission at Children’s Health is “making life better for children,” and I genuinely strive for this every day. However, I have encountered specific ethical dilemmas necessitating clear boundary setting. These have included coming in on a weekend or evening when a child is not doing well or nearing the end of their life, wanting to buy gifts or necessities for families who are struggling, attending funerals, crying in front of families, or sharing information with others outside of work. While buying gifts and sharing information outside of work lie within strict ethical parameters, attending funerals, coming to work when not scheduled, and crying with families lie more in the ethics shadows. Attending patient funerals is a particularly challenging ethical domain. Many providers simply do not attend funerals, while just as many others do. It has been important for me to determine if harm might befall the family if I attended their child’s funeral.

Showing emotions to family members is also a sticky issue. Many therapists have been told “don’t cry in front of families!” I have openly teared up with several families.

Therapist as Advocate

Over the years, I have discovered the importance of advocacy. If the patient expresses certain wishes, such as knowing details of their medical/health status or having friends nearby, I share these with the family and medical team when appropriate and after discussing this with the child. My role as advocate has also included helping the caregivers understand their child’s desires. As with the example of the client and her family mentioned above, I helped parents see their child’s perspective and, in turn, meet her needs during the end of her life. We were able to focus on the goal of togetherness and provide her with feelings of safety and connection the way she wanted. This was a difficult shift to focus not only on what the family wants but want the child desired. Legacy building through memory making is yet another form of advocacy, which can be built into the (play) therapy.

Postscript

Working with children who are dying has been emotionally strenuous yet deeply gratifying work for me. Staying present in my feelings while being fully present for the child and family has been particularly challenging. Utilizing rituals to remember and honor a child has been a helpful tool. Our hospital hosts a memorial service each year for employees to grieve patients who have died. Others plant a seed or add a bead to a bracelet for each child who passes. I choose to keep mementos given to me by patients and consider how each child impacted my life and changed me as a clinician. Moving forward is one of the hardest challenges for me as both a clinician and person. I have learned the absolute importance of surrounding myself with others who understand my experiences working with this population.

A Small Hope: Co-creating a Narrative of Grief – Part II

Bringing Memories to Life

“I want to remember the precious times we had together in those last weeks but already they are fading and I am forgetting,” Claudia said with resignation. It was now a month after Tom had died and the conversation had just shifted from the challenges of getting through each day.

“Is gathering up memories of the precious times something that you might like to do in this conversation?” I checked.

“Yes, those last four weeks,” Claudia said through tears. “From when we were told in the hospital Tom was dying and decided to come home. In the hospital, I asked one of the nurses, ‘How long does he have?’ and she replied, ‘Maybe a week.’ As you know, however, he lived for four weeks… Tom didn’t ask how long he had to live but I wanted to know.”

“Would it be OK to ask… what was important to you that you asked for the nurse’s guess as to how long he had to live?” I added the word “guess” as no one ever definitely knows and that uncertainty is often unfamiliar to people.

Claudia’s voice broke, “I just wanted to know how long I had with him. I think I was just trying to get a clear view of the future.”

“Did you have any hopes for what a clear view might provide you and Tom?”

“I was thinking this is valuable time. It clarified that we wanted him to come home,” Claudia affirmed.

“In this decision to go home, what kind of valuable time were you and Tom hoping for?” (22)

“It meant he could see the changes in the girls. They are so young they change rapidly, especially Libby who develops in small ways every week. I knew that visiting in hospital is just not the same. Everything is different, distorted and not in their natural state,” she explained. Visions of hospital rooms with their lack of privacy and noisy nights floated through my mind. I tried to imagine visiting such an unfamiliar environment frequently with a baby and young child.

“What does it say about Tom’s relationship with Imogen and Libby that he prioritised noticing small changes in them even when he was dying?”

Claudia smiled. “He treasured and valued every little thing about them. He’s been quite good at appreciating small things for a very long time,” she answered, speaking of Tom in the present.

“Could you tell me a story of Tom appreciating Libby and the small changes in her perhaps? And then Imogen and what he enjoyed about her?” I was aware that I was collecting memories, not only for Claudia, but for her girls as well. Together we would build a document of memories she could keep. (23)

After Claudia had shared some stories, I became aware we had diverged from what she had originally said she wanted to discuss. “I notice we have moved away from speaking about the four weeks you said you wanted to focus on. Would you like to continue on this track or would you like to spend some time talking about the last weeks of Tom’s life? What would you like to do at this point?” (24)

“The last four weeks. It’s fading so fast. I’ve even forgotten subtleties that were routine to me, like giving him his morning wash, and that was something I treasured doing,” Claudia stated. I was glad I had checked. I didn’t want the conversation to end without it having been what she wished.

“Would asking you about treasuring his wash be a good place to begin?” Claudia nodded and sat back on the sofa. “Would you like to walk me through how you went about giving him his wash?”

Claudia began to recall previously unspoken details of the daily routine with me, inquiring into their meaning. Towards the end of collecting as many details as I could I asked, “When you were washing him, was there a particular way you touched him?”

“Yes. When he was moving less, I would give him a little massage, or I’d move his legs around. I could tell he liked it. After his massage, we’d put frankincense on his palms and the soles of his feet and he’d go, ‘Oh, Frank!’ and wiggle his fingers making a joke!” Claudia laughed.

“Did he keep his sense of humour even…”

Claudia’s words tumbled out in her enthusiasm. “Always, right up until that last night. A carer came for the night to help. When she saw Tom she said, ‘Still unresponsive,’ so he wriggled his eyebrows at me. It was our little joke! Frequently through the day I would wash his face and I’d say, ‘Would you like a cool flannel or a hot flannel to wash your face?”

“When you were giving him that choice… what was your intention?”

“He had very little control over his life. He deserved respect,” Claudia explained.

“What did you want him to know by giving him that choice and respect…and control?” In tender tones Claudia answered, “He was still just as valuable. Even though he couldn’t move or see much, he was still my Tom, he was still the same to me.” Moved by her love and respect I responded, “May I ask, what would have Tom noticed that would have told him it was you washing him rather than someone else and that he was still the same to you?”

“He would have felt my love in the way I washed him. I was given a choice of washing him or having a carer do it. There was no way I was going to let someone else do such a personal, private thing for him,” Claudia stated, flicking her hair behind her. (25)

“What were you valuing, do you think, when you prioritised this loving moment with him and protecting his privacy even as you were parenting two small children and doing everything else that was required of you?” I reflected on the exhaustion that comes with parenting very young children. Such a choice was not right for everyone. Claudia lowered her voice, leaning towards me as she spoke, “I wanted to protect his dignity and have that intimate time with him.”

“May I ask, what did you experience as meaningful in the relationship when you managed to get that time together and share love and intimacy?”

“It felt like this was why we had him at home. It meant I was the one changing his nappy… And I did feel proud and honoured that I could do that for him. It’s not something a wife normally does for a partner, but I guess it was a new intimate thing we could do where there were precious few of those new things.”

Struck by her ability to generate such a deeply loving experience in something so far from what couples ordinarily do together, I responded, “What does it say about you that you felt proud and honoured to do that care for Tom … that you could find intimacy in changing his nappy for him rather than seeing it as a chore?” (26)

Thoughtfully Claudia answered, “I think I understood what he needed. I understood the best way to do that for him.”

“What was it that you understood about Tom in those last weeks that was important to you both?” Claudia pondered. “We were able to slow things down a bit.”

“How did you do this slowing?” I wondered. Claudia spoke slowly as she considered, “Just focusing on little things. I’d go and get him milkshakes and I’d say, ‘So what flavour milkshake do you want today and where do you want me to get it from?’ It was treasuring very small decisions. I got great pleasure from him eating or drinking something and he got to make decisions and think about that milkshake and what he wanted. Life zoomed in and focused on those nice moments.”

“What did you know, Claudia, perhaps about living with such a serious illness, or about Tom, that had you recognising that making a decision about the flavour of a milkshake was worth treasuring?” I couldn’t help but notice her extraordinary sensitivity to Tom’s experience and I hoped that my questions might draw Claudia’s attention to her wise and gentle care.    

Claudia laughed. “Tom knew his own mind. I would never make that decision for him, particularly around food,” she said, reminding me that Tom was a skillful and passionate cook. “Choices in his life were dwindling. He didn’t have a lot of control.” She dropped her head for a moment, reflecting. Tears glistened in Claudia’s eyes as another thought occurred to her. “Tom knew how much it would hurt me when he went.” The tears gathered and a sob escaped but she went on speaking. “He didn’t want to go but most of all he was worried about me…” Claudia started to cry unreservedly. Her face reddened as more of her body joined the experience of grief. Rather than a break in the conversation, it was as if these tears spoke what words couldn’t as we reflected on Tom’s love for her even as he was dying. (27)

Quietly, I eventually asked her, “What were these worries Tom held for you?”

Claudia was barely able to speak yet she persevered, wanting to express what the emotion meant in words. “He just knew how hard it was going to be… he cared enormously about me being alone.”

We were quiet for a time as Claudia continued to weep.

“He was sad for himself and the girls, but he was really sad for me,” she eventually explained.

I thought about Tom worrying about Claudia even as he lay in bed so sick. “What does Tom’s compassion mean to you? …. that he couldn’t bear to think of you being on your own…that he cared so much about what might happen to you…?”

“It was a demonstration of how much he loved me,” Claudia choked out. “I usually cried,” she explained, smiling at herself through the tears. “I felt guilty every time I cried and got comfort from him but he’s the person I turned to when things were wrong. He said comforting me was something he could do.” She stared at me with her eyes wide waiting for my response.

“Do you have a sense of what it was to Tom that you chose him to seek support from?”

Claudia exhaled, “I think he was thinking about the time when he wouldn’t be able to support me, and he was doing what he could.”

“How would Tom have understood the way you saw him when you sought comfort from him?”

Claudia considered, speaking what seemed like newly formed thoughts. “He was my best friend, and we were there for each other. It didn’t change when he was sick. I think it was hard but very important for him. It allowed him to show support for me, I guess. He saw it as something he could do for me when he could do so little, when I was doing so much for him. I didn’t feel the need to protect him.”

“What do you know about Tom that you knew you didn’t need to protect him?”

“He was strong. He said he wasn’t scared of dying.” Claudia let out a big, long sigh collapsing in on herself in seeming resignation.

“Would it be OK to ask you one more question about the way you shared your grief together?” Claudia nodded.

“What did you know about the relationship that told you that talking would be best for it?” I wanted to bring forward Claudia’s knowledge of their particular relationship because I knew that this kind of talking wasn’t best for everyone.

“It’s what we’ve always done,” she readily replied.

Our time was coming to an end. After I summarised what we had been discussing, I checked with Claudia, “How has our conversation gone today? Has the experience of reflecting on the last four weeks connected you with anything that is helpful or important to you?” (28)

“I think it’s highlighted how we did it according to our values. That’s incredibly important to me. It eases the pain just a little to know that,” Claudia responded.

“How might you carry that knowledge do you think? That you did it according to your values?”

“I guess by carrying on doing that with the girls,” she replied thoughtfully.

“Perhaps we might come back to that next time if it interests you…. but could I ask you something else? As you reflect on the last weeks of Tom’s life, was there anything that happened that moved you a little closer to being the person you want to be?”

With some energy and perhaps surprise in her voice, Claudia answered, “Now that I talk about it, lots of things. Doing it our way and speaking up to make that happen. The way I was able to show him how much I love him through what I did. It was so hard, but I was there to support him die the way he wanted to do it. I hadn’t really thought about it before.”

Turning Towards Pain

Claudia and I met each week until I was scheduled to be away on leave. (29) Before I left, we planned who Claudia might turn to in difficult times for support and what she might do. Not long after I returned, we were once again sitting in her home. After greeting each other warmly, Claudia brought her cup of tea into the living room, and we sat down.

“We had a fortnight gap this time, how did that go?” I inquired.

Claudia let a rush of air out. “My sister said, ‘Have you seen your counsellor this week?’ And I said, ‘No we couldn’t make it. Sasha was away.” And she said, “I always know when you haven’t seen her.” I thought I’d be fine, but I’ve had a really awful fortnight.”

“What is it that you do differently in the week when you’ve had a chance to talk?” I inquired, but I was off track. (30)

“I was thinking about what it was that changed. You know how I was feeling numb? Well, I’m raw now. I can’t seem to stop crying…” Claudia’s voice broke, and she could no longer speak. The pain gathered and eventually she sobbed, “It’s all the time… just crying all the time. I’m right back to raw and where is he? And how can this be happening?”

I listened, feeling the echoes of her pain. (31)

Claudia bowed her head and tightly wound her arms around her body. It was as if she was holding herself together. “I’m right back there… and that lovely numbness… that I was feeling has just gone,” she stuttered through the sobs. “It’s horrible… just that relentlessness… And I went to see a clairvoyant and she was just ghastly. I think that tipped me over the edge a bit. I realised I had a lot of hope riding on it.” She looked up at me with wet eyes.

My voice was soft. “May I ask …what were your hopes in seeing the clairvoyant?” I wasn’t surprised Claudia had visited a clairvoyant. Many people search for connection with someone who has died through spiritual understandings they hold.

“I didn’t realise until afterwards that I was hoping that it would be for real. I would have got a feeling of peace knowing that he is somewhere and can be with us. I didn’t get that at all. I just felt duped. I was already feeling quite low but hopeful, I realised afterwards.”

“Would it be okay if I ask a bit more about these hopes?” Claudia nodded as she blew her nose. “Would you mind speaking a little about what you were hoping for?”

“That he’s somewhere…And he’s not just puff gone. That he is somewhere and sometimes, somehow, he is around…that’s what I really want to believe…I need a message to say, ‘I’m OK, I can never see you again but I’m OK…and I know you are OK.” It is one of the hardest things I think, the not knowing.” I reflected on how much not knowing there could be surrounding illness and death.

Claudia’s anguish layered her words as she again tightly encased herself with her arms. “I’m stuck in this awful hole…I don’t know how to go on. I just don’t know how to hold on. I feel like I’m clinging on to a ledge. I have to but I don’t know how to keep going and going and going…” (32) I tried to imagine the relentlessness of continuing on. Her words created a vivid picture of the ledge. I made sounds of empathy as I listened, a witness to her pain and sorrow. “How important was knowing where Tom is in this holding on?” (33)

“Very important,” she cried.

“Yeah… yeah…,” I replied, almost crooning in my compassion for her. “What would it have given you in the holding on?”

Claudia cried, hiccupping as she answered, “Some sort of peace that he’s OK…that he’s with us…and that I might see him again…It’s so hard. It’s not like breaking up with someone and you know they’re OK. Somewhere they’re alive…”

“Completely different,” I affirmed.

Claudia voice was husky, “I just can’t get my head around it. It’s the absolute worst that could happen to me…I’m really struggling…” Her tears took over and we paused, neither of us hurrying or censoring her expressions of grief. “…and I’m sure having less help this week is making a difference. The family have been away. I’ve actually been feeling OK with my parenting.”

My ears pricked up. “Yeah…?” We had talked a lot about the impact of grief on her parenting as Imogen and Libby were Claudia’s top priority. However, I didn’t want to move Claudia away from her talk of the struggle sooner than she wanted so I resisted asking a question and kept my query very small.

“We’ve found a routine and I’m not shouting. I’m not feeling desperate about those times,” Claudia told me with an energy that conveyed to me she might have a possible interest in speaking further about her parenting.

“Is this something you would be interested in talking about?” When Claudia indicated, she would like to follow this direction I continued, “What’s allowed you to be OK with your parenting especially when there is so much struggle?”

“I think routine has helped. It’s soothing. And I’ve got really, really good at filling in the time now. Those girls are bloody tired by the end of the day because I’ve worn them out. Like last Sunday, we went to the markets and met a friend for breakfast, then we went to a school children’s art exhibition which was a couple of hours and then we went out west to see another friend. We got home at 6 P.M.” Claudia sighed, sounding exhausted even by the thought of what she had just relayed to me.

While being so busy was not Claudia’s preferred way of parenting prior to Tom’s death, this was a survival strategy she was using. “I’m really tired but that’s how I cope. Just fill in every hour possible. It’s not because I don’t want to think because I like to think about him. It’s just the only way I can cope with the kids. It’s helped.”

I returned to the aspect of parenting Claudia was feeling good about and, remembering Tom’s belief in Claudia’s parenting, decided to bring him into the conversation. (34) “And what would Tom make of you doing your parenting in a way that you felt good about? Finding a routine and being more how you want to be with the girls. What would he be thinking about that?”

“He’d be saying, ‘I knew you could. I’m proud of you.’”

We both smiled. With a lighter voice I asked, “What might Tom have known about you that allowed him to know you could do it?”

“That I put them first…,” she replied as tears trickled down her face. “…That I’ll always look after them…” Intensity and what sounded like determination entered her tones of sadness “…and I’ll hold onto that ledge for them…hard as it is…”

“Is Tom under your feet helping to hold you up a bit too?” I asked, wanting to add his support if it was there.

“I don’t know…I hope so…He would if he could…if he can he will…I forgot about the rawness. It’s so horrible.” I nodded.

“It’s only three months since he died,” Claudia told me with emphasis.

“No time at all and yet perhaps a long time too. How would you describe it?” I reflected, slowly waiting for what else she might be about to share. Claudia replied, crying as if her heart would break, “No time and yet forever. It’s part of why I hurt so much. How’s three years going to feel since I saw him? And thirty years? I feel like I’m only living for my girls…to give them a good life…and not enjoying any of it myself. The hole just keeps getting bigger.”

“Is it hard to imagine that the hole might stop expanding and steady a bit? That it might be less gaping one day?” I said, offering a future possibility.

“I can’t…”

I nodded.

“Is your wanting to parent the girls so they have good lives…” I began to ask as I looked to connect Claudia to parts of her life that might help support her keep holding on. Her virtuous desire to care for her children in spite of the pain of living stood out to me.

Claudia interrupted me, staunch as always in her love of her girls. “I want them to have good happy lives, absolutely.”

“How would you describe a good, happy life for your girls?” I invited, seeking to connect her with a future for them that might be possible to envisage.

“Doing things that stimulate them and interest them with me…positive times with me and …being strong in themselves…able to weather some storms… and get enjoyment out of things…and finding passions. I want that for them but not for myself. I don’t believe in having that for myself. I can’t see it again. It feels like it’s all gone…”

We paused together for a time and Claudia wept. (35) “I feel like something in my soul has gone… an intrinsic part of me.” Her description touched me as I murmured a quiet acknowledgment. After a pause I added, “May I ask what part of your soul would that be?”

“All of my adult self…is connected to Tom. Everything I do and think is influenced by him and our relationship. All my memories of being an adult…are with him. The way I view things is because of him. It is lovely and I’m very glad. But it’s such a wrench.”

“Was your soul entwined with his?” I wondered. Claudia nodded. “And was his entwined with yours?”

She nodded vehemently. “I don’t know where he is! It’s just so hard.” Claudia’s body shook and she put her head in her hands. It was my turn to nod as we both acknowledged the hardness. It was so hard (36). As we sat there for a time, I considered Claudia’s disappointment with the clairvoyant and how it had made the pain worse.

“I wonder if we can think about that a little bit…if we could figure something out, away from the experience you had with that particular clairvoyant…”

Claudia laughed heartily through her tears, “…Who believes in herself even if she is a complete fraud. I can’t accept that he’s not somewhere or not existing.”

“What are your understandings of possible places or ways that Tom could be existing?” I asked. People I meet with often have very different ways of understanding death even if they identify as belonging to a well-known faith tradition. They also often re-evaluate beliefs they’ve held for a lifetime in moments of illness and loss. I can never assume I know what someone believes.

“That he is part of the energy, the finite energy of the universe… that’s scientific,” Claudia explained to me. I listened attentively as she continued, “Or he could be in a different realm or a different world which is potentially scientific as well.”

“… like a parallel universe?” I inquired, noting her tears had stopped. “Yes. Or in some heavenly place, someplace souls go where there’s peace. I’m sure there are other frontiers but those are the ones I think of…I want him to be conscious somewhere and aware of us. If I think about another world or a heavenly place, he would be conscious of us.” She stared at the sky out the window. “What would a sense of Tom’s presence give you?” Claudia returned her gaze to me. “I would know he’s with us, present in our lives”.

“Do you think you have any impact on that sense of presence or how that presence could be felt?” I inquired. Claudia looked at me quizzically. “Clairvoyant people say we do, don’t they? If we can be open to it or not open to it.”

“I don’t know…Can you influence the way you feel Tom?” I wondered curious.

“I don’t know. I’d like to,” she affirmed. I cast my mind back to a previous conversation. “When we met last time, you mentioned you had felt him.”

Claudia confirmed, “I felt him really strongly.”

“May I ask what you were doing at the time?”

“I wasn’t doing anything out of the ordinary. I was probably having a laugh which was unusual as it was maybe two or three weeks after he died. The girls were playing around so a bit of a lighter moment and I was laughing with Libby playing peek-a-boo.”

“Would it be possible for you to have faith in yourself even if you can’t have faith in the clairvoyant you met?” (37)

“I’ve tried very hard to separate those two. It’s where I came to on Saturday. I didn’t have a very good experience with her but that doesn’t mean it’s all out. I didn’t pin my hopes on just one person. I booked two clairvoyants. I’ve booked the other one for August and I’ve heard she is authentic and very good. I’ll keep that booking. I’m not giving up on it altogether.” Claudia sounded calm.

Laughing, she added, “I can spare another $120! If she’s good!” I laughed in response before inquiring, “What about your own experience of feeling Tom was with you?”

“It was very strong. But it’s very easy to doubt myself. That’s what’s hard I think,” Claudia explained. “I had another experience where I was looking for a necklace and I felt Tom very strongly. I was looking and looking and then I found it one day and I had a very strong feeling that Tom had helped me find it. I know that sounds strange. But it was such a strong feeling that I said, ‘Thank you Tom! That’s for Imogen.’ It just came out. I need more! Greedy, greedy!”

“When you feel Tom with you, what does that feel like?” I asked curiously.

“Normal! The old normal,” she explained with energy.

“How do you know he’s there? When he helped you find the necklace, what happened that told you that?” I wondered, keen to learn more.

“It just felt like everything’s OK again.”

“Ah.” I sat back in my chair.

“And I don’t have to have this new normal. Both times I just felt lighter and happier. This nightmare is over or maybe not what it seems.”

“If you met with another clairvoyant whom you did or didn’t find authentic, could anyone take away those experiences that you’ve had?”

“No. They’re authentic to me,” Claudia stated.

“You said you want more of them…”

In a sing-song voice Claudia interrupted, “I do!” She was grinning.

I returned her grin. “On demand!” I echoed in the same sing-song tones. Claudia laughed. (38)

“They felt authentic to me and I’m a big believer in going with your gut instinct. I’m quite in tune with those things. They felt real.” Claudia sat back looking steady.

"I drove back to the hospice some time later reflecting on the many understandings people hold about what happens to a person after they die." (39)

New Understandings

Claudia returned to work and, as the routine settled and time passed, the pain of Tom’s death intensified. As Claudia explained to me, “It is now not just days or weeks since I last saw Tom, but six months. The longer it is since I last saw my Tom, the more I miss him.” I wasn’t surprised as many other people have described a similar experience to me.

It was a rainy day. Claudia had finished breastfeeding Libby and had returned from laying her down to sleep. She walked up the stairs with a heavy tread and sat down. “It feels like we are now in a new normal. The new normal makes me so sad. I don’t want a new normal. I want the old normal. I’m feeling guilty; sad and guilty.”

I made a few acknowledging sounds as she talked, “It is so tough. Who would want this normal when comparing it to having a partner they loved alive?” I paused a moment as I looked at Claudia’s drawn face. “Would it be helpful to share with me some more about this sadness and guilt?” I continued, wondering if it might be useful to get to know th

A Small Hope: Co-creating a Narrative of Grief – Part I *

This story is dedicated by “Claudia” to “Tom” in memory of his loving ways.

I would like to thank “Claudia” for her generosity in joining me in adventuring into new territories. There would be no story without her.

I would like to thank Aileen Cheshire, Catherine Cook, William Cooke, and Peggy Sax for their insights and helpful suggestions, and David Epston for his editorial support.

Introduction

Grief can be excruciating. The pain of loss may be overwhelming at times and its duration and intensity can be a shock to many. However, it is not always so. Relationships are shaped differently and there are many possible stories that can be told of such an experience.

The following illustration of Narrative Therapy (2) was originally written as a therapeutic document for a woman who had been forced to contend with the death of her partner while she parented their young children. “Claudia” (3), as she chose to call herself for this article, was experiencing significant loss. At the same time, she was struggling to find compassion for herself. I hoped that if Claudia viewed herself in a story of our conversations, the narrative might lend strength to the new understandings we were co-constructing. Claudia was enthusiastic about the idea of co-creating such a document and after going through a careful consent process, we agreed that we would record our conversations and write a story from the transcriptions.

Our purposes for writing a story evolved. As time passed, Claudia wanted to share her knowledge of grieving with others. When we discussed the possibility of sharing the story with a wider audience, I hoped the story might show the unfolding of therapy, and in particular, narrative practices that companion a person (4) and invite them to explore new meanings of their experience.

I have therefore added footnotes to the story [Ed. Note: Please see the original article for these notes]. The footnotes explain more of what I was thinking as Claudia and I spoke, and why I asked particular questions. They also include some thoughts on narrative practice with people who are suffering as they live with loss. You may choose to read the story and the footnotes together or separately.

For those of you who are interested in experimenting with writing a story, in contrast to other forms of therapeutic documents, please see an earlier paper I have written on writing narrative therapeutic letters. I have described the process of story writing and some of the possible benefits within that paper.   

A Cupful of Time Folded in with Love

“It’s urgent,” the community nurse told me solemnly. “Yesterday, Tom was told he was bleeding internally by the doctor at the hospital. When he heard nothing could be done to stop it, he asked his wife Claudia to take him home. Understandably, they are reeling; this has all happened so fast. We’ve offered counselling support and Claudia has agreed. She’s asked if you could ring after 10 o’clock so you don’t wake the baby from her morning nap.”

I walked back down the hallway towards my office reflecting on what it might be like to receive such news. Just after 10 o’clock I telephoned. Claudia answered. “Hello, it’s Sasha speaking. I’m one of the counsellors from the hospice. I understand you might be interested in meeting up with me. Have I got that right?” Quite often people have another understanding from a referrer, so I was tentative to give Claudia space to say what she wanted. (5)

“Yes, that would be great,” she replied.

“How would tomorrow suit you?” I asked, thinking of the urgency of the situation.

“Look, it’s very kind of you. I know it’s Friday tomorrow but it’s going to have to be next week. I’m sorry. I promised our five-year-old, Imogen, I would bake a cake with her tomorrow. It’s her birthday and I promised,” Claudia apologised in a rush.

“Are you the kind of mother who honours promises?” I asked with a smile in my voice. (6)

I heard Claudia let out a long breath. “She’s been looking forward to it all week.”  

Warmly, we now began to make a time to meet up. In the back of my mind, I was thinking about Claudia prioritising a promise to her daughter when she was possibly having the worst time of her life. Images of baking with my own young daughter many years ago floated through my mind. I wondered, “What might Imogen remember of this time when her Daddy was dying and when promises were kept to her five-year-old self? What might she say about the way she was cared for by her Mum at such a terrible time?” I also appreciated Claudia’s ability to put me off and say what she wanted. I was well aware it wasn’t easy to delay health professionals, especially to honour the wishes of a child.

I looked forward to meeting Claudia and Tom, and learning more about them.

A Surprising Renewal

I parked the hospice car down the road from the house, worried that the signage on it might communicate to the neighbours something Claudia and Tom wished to keep private. It wasn’t the anonymous unadorned car I usually drove. A young woman opened the front door of Tom and Claudia’s home and, as I looked at her animated face, I realised I knew her.

“Do you remember me?” she asked, wide-eyed, as if she could hardly believe who she was seeing.

“Yes!” I replied, flooded with memories. It was nearly 20years since Claudia and I had last seen each other. Her father had been dying at the time and Claudia was caring for him. I was working as a counsellor in a university counselling service and we had met together across the last 18 months of her father’s life. I easily recalled Claudia’s devotion to his care at a time when her contemporaries were more focused on parties and the opportunities study could provide them.

I walked further into a room that had ushered in many unfamiliar health professionals over the prior week, full of gratitude for this chance reunion and hopeful that it might make some difference for Claudia and Tom.

Claudia invited me to come into a bedroom for some privacy and together we sat on the bed. She was dressed comfortably in shorts and a T-shirt with her long, fair hair tied back off her face. Clothes that would be practical for parenting work and caring for Tom, I thought. There were dark circles under Claudia’s red, lidded eyes, easily visible because of her fair skin, and her face had a hollowed appearance in spite of her warm smile.

Claudia explained she had been up all night with their baby who was sick, and on top of that she herself had toothache. “Somehow, I am going to have to fit in an appointment with a dentist, but I don’t know how I’m going to find the time,” she exclaimed, throwing up her hands in dismay. After talking further, Claudia led me into a small, darkened room to meet Tom. He lay on a single bed unmoving and silent. Claudia touched Tom gently and he turned his head towards us. “This is Sasha,” she said. Tom looked up at me and we exchanged a greeting.

I sat down on a chair facing Tom while Claudia ignored the other chair which was placed near his pillow. Instead, she sat on the floor with her arm resting on Tom’s shoulder. Tom’s skin was a faded tan colour, suggesting to me he had once spent considerable time out of doors. In response to my greeting, he slowly shifted in the bed with jerky movements. Once he had settled, I leaned forward looking at him. “Tom, it’s lovely to meet you.”

He was a tall man I guessed, with fair hair and a kind face, softly lined around his eyes and mouth. “I’m aware talking can take a lot of precious energy. Is this an OK time for the three of us to talk together, or would you rather we spoke another time? I want to do whatever best suits you and Claudia. I can easily fit in either way,” I offered, smiling warmly at him.

“I’d like to talk for a bit. I won’t last long. We’ve been looking forward to it,” he responded, glancing at Claudia.

“When you find yourself beginning to tire, will you notice and be able to let me know?” I inquired, thinking I would need to be alert for any signs I was extending the conversation longer than he could comfortably manage.

“Claudia will know. She’ll tell us both.” Claudia nodded, her face soft and relaxed.

“Thank you.” Sitting back in my chair, I made myself comfortable while I looked from Claudia to Tom. “Illnesses have a way of taking over people’s lives and yet people are so much more than the illness they are living with. Would it be OK if I asked you a bit about yourselves and your lives before all this happened?” (7)

“Gosh it’s so nice to be asked that,” Claudia exclaimed. “It makes me feel like I matter, we matter. Tom’s a teacher and you probably noticed the garden. He grows plants from seed and often ones that are good to cook with.”

In a faltering voice Tom contributed, “Yeah… I’ve taught younger age groups and I love to garden and cook.”

“Food is very important in this house!” Claudia laughed.

Tom quietly added, “In the last year I’ve worked tutoring from home … it’s been ideal with me having cancer.” I considered asking Tom about how he lived with cancer but decided to pursue getting to know them more a bit more first. Claudia continued the conversation in a lively manner sharing with me stories of her work and interests.

“Tom, if I were to know Claudia as you do, what might I come to appreciate and respect about her?” (8)

Tom looked at Claudia as he answered me. “I love Claudia very deeply. She is kind. Really kind. I saw that from the first. She is honourable and dedicated to the people and things she believes in. Her loyalty is like none other and there is nothing I wouldn’t share or confide in her. Claudia is a wonderful, loving mother. Knowing that makes it easier for me to be sick because I know I will be leaving the girls in her care.”

“Could you tell me a story that illustrates some of these attributes you love and appreciate in Claudia?” (9)

Tom spoke of the care Claudia had given her father as he was dying. “She will always have your back,” he told me.

“What difference has Claudia ‘having your back’ made to you?”

“It has given me a whole new life that I wouldn’t have had without her. It’s meant I can be myself and pursue my interests. It has meant I have had the joy of becoming a father.”

Claudia responded by clasping Tom’s hand. “I love you so much,” she whispered.

After I asked Tom a few more questions, I turned to Claudia.

“Claudia if were to get to know a little of the Tom that you love so much, what might I come to respect and appreciate about him?”

“You’d appreciate his authenticity. Tom is real. He has a wicked sense of humour too! He’s always polite but he doesn’t suffer fools.”

“Would it be OK to ask you for a story of Tom’s authenticity and his wicked sense of humour?” I grinned at Tom and his eyes twinkled in return. Claudia launched into some stories with enthusiasm. Tom lay back quietly enjoying her words.

As the conversation progressed, it turned quite naturally towards the cancer and what they had been going through. I looked over to Tom and inquired, “What do you give weight to in your days as you live with this cancer?” (10)

“My family, being a father, I like to be involved with the girls,” Tom confided. A small smile emerged on his face. Tom tried to raise himself in the bed but, before Claudia could help him, slipped back down and, seeming to give up on a sitting position, rested his head on the pillow. When he looked comfortable again, I asked, “Could you help me to understand a little of what it means to you to be a father?”

“I love it! I wasn’t truly happy until I was a Dad. I took one look at Imogen, our eldest, and I fell in love.”

I was aware Tom’s words might carry meaning that could be passed on and retold down the years, perhaps providing solace for his girls.

“Could I ask you about this experience of falling in love?”

Contentment seemed to flow over his face for a moment, relaxing the lines as he contemplated my question. “Sure. I didn’t know what happiness was till Imogen came along. She made my life complete.”

“What did Imogen’s birth give you that has you experiencing this sense of completion and happiness?” I responded smiling.

Tom pondered, “I think it was a proper purpose….”

Claudia joined us. “…Being parents connected us to what’s important…I think Tom’s found a role that really fits him. He’s a good father.”

Tom’s quiet voice gained strength and the corners of his eyes turned up. “…And then Libby was born and I felt overwhelmed with wonder.”

“What had you overwhelmed with wonder when Libby was born?” I asked, collecting stories again. (11)

“Libby having her very own personality and the way she could let her feelings be known,” he responded with a chuckle. Claudia joined in, “He sent me a message when I was at work that said, “Baby does not want to sleep in the bedroom today. She was very vocal on the matter!” Claudia laughed. “Tom always appreciates her strength of character and being able to understand what she’s trying to say.”

Enjoying their delight, I responded, “What is important to you both that the experience of parenting has connected you to?”

“Our values and beliefs,” Claudia told me. Tom nodded, meeting Claudia’s eyes. “What we treasure.” I was keen to ask them more about their values and beliefs, but I didn’t know how long we might have for our conversation. Tom was likely managing fatigue and so I decided to pursue another path. I would return to the detail of what they treasured at a later date.

“Would it be OK to ask how this giving weight to what you believe in and treasure shapes your experience of living with cancer?” (12)

“It’s given us good times, wonderful times in amongst the hard stuff. The girls make each day worth living for,” Tom answered.

“We spent one morning just watching Libby learn to roll,” Claudia laughed.

Our laughter was cut off by sounds of crying from the room upstairs followed by shuffling as Tom’s mother walked quickly to attend to Libby.

Claudia tilted her head as she listened for signs Libby had been soothed. Tom stilled listening as well. “How will I do it without you?” she whispered, looking back to Tom. Tears began to flow down Claudia’s face. Stifling sobs, she rested her head on Tom’s chest and stretched her arms out as if to cradle the entire length of his body.

“I’m still here now. I’m still here now,” he crooned, patting her back.

“How will I raise the girls without you?” Claudia reiterated.

“I trust you. You will do a good job,” he said, trying to placate her. Tom continued to pat Claudia’s back in the age-old rhythm of comfort. I remained quiet, touched by her pain and his attempts to console her. (13)

After a time, I asked him, “What is it that you know about Claudia that allows you to trust her?”

Tom began to describe his faith in Claudia, gently patting her back all the while he talked.

“Could you tell me a story that illustrates this trust you hold for Claudia and her parenting?”

Tom expressed his admiration for Claudia as a mother. “She always puts the girls first.” He told me stories of her kindness and her beliefs about mothering, explaining how important their shared parenting beliefs were to them. As he spoke, Claudia listened silently, intent on his every word.

“How might you like to carry these beliefs you share forward so Imogen and Libby might know something of what is important to you as a couple and as a family?” I responded.

Claudia suggested they create a family charter that recorded their values. (14) Tom was enthusiastic about such a project and together we discussed what might be included in the document.

I checked with Tom as to how his energy levels were at regular intervals. Mindful that it is hard to send someone away, when I noticed his eyelids start to droop a little, I began to bring the conversation to an end.

“How has this conversation been going? Have we talked about what you hoped we might or have I taken us off track?” I checked.

“It’s been good,” Claudia said.

“Thanks. I liked talking,” Tom said warmly.

Claudia showed me out a few minutes later.

A Small Hope

Over the following week I heard that Tom had stopped eating and was now unable to leave his bed. The nurses told me that Claudia had insisted no one speak to her about his symptoms or deteriorating condition.

At the end of the week I went to see Tom and Claudia as we had arranged.

Claudia and I sat outside in the garden at an old wooden table. Tom was inside sleeping, too sick to talk. The garden provided a quiet private place away from the activity of the household as the extended family all worked together to care for him and the girls. Tired, harrowed faces had welcomed me and in the heavy movements of the family, I thought I could feel unspoken sadness weighing down their every step.

Claudia looked up as the leaves ruffled in the moving air. “It’s been a better week.”

“When you look back on the last two weeks, do you have some ideas about what has contributed to this week being better?” I asked, incorporating her words into my question.

“I’ve stopped looking ahead,” Claudia replied. Not wanting to presume what Claudia meant, I responded, “May I ask, where do you look when you’re not looking ahead?”

“No one can know exactly what’s going to happen, can they?” Claudia replied. “Now I only think about today and I have some hope.”

“Could you help me to understand a little of what this hope (15) is to you?”

Claudia paused, bowing her head.

“It is only a small hope,” she said in a quiet voice as if confessing something. “…To be with Tom, for another day or maybe even a few days.” Claudia looked up at me with tears gleaming in her eyes.

“May I ask what difference this small hope makes to you?” I replied, moved by the humility of her hope.

“It means I’m not crying all the time. I sat by the window and told Tom what I saw outside. We spent some time talking quietly together once Imogen was at school. I made him a little something for lunch and we sat together. He told me being together like that was ‘perfect,’ and he has never said that before.”

“As you look out the window describing the view to Tom, what does this small hope do that has Tom finding your time together perfect?”

“I can enjoy the moment and he feels that. It helps me forget what is coming,” Claudia explained.

“When you spend these moments that the small hope has given you, what has been made possible that hadn’t been there in the week before?” I knew that the week before had been distressing for them both.

“Close time together. Over the past few months, we’ve been arguing because of the stress and that isn’t us,” was Claudia’s reply.

“How did you come to find closeness in sharing the view from the window and talking and bringing Tom food?”

Claudia told me with eagerness now edging into her voice, “It’s what we’ve always done together, enjoyed the simple things. We like to enjoy those things that money can’t buy.” Claudia continued telling me stories illustrating this.

“What else do you do in the day that speaks to the closeness you share as a couple, and as parents together, and brings you closer to Tom?”

“Gardening,” Claudia readily answered. “I feel close to him when I do his garden and I will keep doing it. I just couldn’t do it before. I was too shocked. Now I have some hope and it gets me through the day.”

“How important is this hope in keeping you close to Tom and getting through the day?”

Firmness was in her voice as she stated, “Very, very important. It means I can enjoy some time with Tom and that is the most important thing to me. The time is so precious. And I don’t want to cry every minute.” We carried on talking about how Claudia and Tom were enjoying the window of time they still had together when Claudia confided, “Did you know I’ve stopped the nurses telling me about Tom’s symptoms?” She glanced up at me and paused, “Maybe that means I’m in denial, I don’t know.”

“What sort of talk are you encouraging or hoping for when you halt discussion about Tom’s condition?” I asked.

Her reply tumbled out. “I know what’s coming…I just want a little longer, just a little longer with him without thinking of that. It’s always there in the background but I don’t want to go there before I have to.”

I could easily understand why Claudia might want to protect the hope that was allowing her to savour time with Tom. To me it was not denial of his approaching death but rather embracing what was most important to her — close time with Tom before he died.

I left that day not knowing when Claudia and I would next meet. The uncertainty Tom and Claudia were living with made it difficult for Claudia to plan. We had agreed she would call me when she next wanted to meet.

The following week I heard that Tom was dying. The hospice nurses were visiting daily and every effort was being made to keep him comfortable.

One morning I arrived at work early. I sat down at my desk noting the light was blinking on my answerphone. I punched in the numbers to access my messages. There was just one. One of the hospice community nurses had called to let me know Tom had died. “Claudia would like to see you,” she said.  

“Such a lot has happened since we last met. Would you like to talk about the last fortnight or is there another place you would rather begin?” I asked, seeking to create some space for her to guide me as to how she wanted to begin our conversation. I didn’t know how talking about Tom dying would be for Claudia or what language she preferred to use. (17)

Claudia spoke slowly contemplating her words as if they were transporting her back in time. “I moved Tom back into our room after I saw you. I’m so glad I did. It was much nicer for him.” She smiled tenderly. “I lay beside him on the bed that last week as he was dying. I told him over and over, ‘You’re loved and you’re safe.’ It was just him and me when he died…” Claudia paused, her eyes staring unfocused. Returning her attention to me she resumed speaking. “The family had left for the evening to give us some time alone together, but I called them when I realised he was dying. They came straight back. In the end, he died like he’d wanted.”

I imagined Claudia reassuring Tom with her love. “May I ask… what difference did it make to Tom to feel loved by you as he was dying?”

Claudia sat back in the sofa. “I guess he could bear it. He’d had a tough childhood because he was different, and he was bullied a lot. But when he died, he had a family. He was loved. He had all the things that were really important to him.” She glanced at a photo of Tom and the girls on the wall. I too looked at the picture of Tom holding Libby while Imogen wrapped herself around his legs.

The slow pace and rhythm of my words matched Claudia’s as I returned my entire attention to her and expanded my previous question. “What did it mean to Tom to have a family and to be loved as he was dying do you think?”

“Everything. A chaplain visited Tom at the hospital just after we heard the news he was going to die. The chaplain asked Tom, ‘Has it been a good life?’ and Tom said, ‘Yes. It has been a good life.’ It comforts me to think that. He always said he’d got a life through me he’d never expected to have.”

I leant towards her as I replied, “What was it that he got from his relationship with you that made his life good?”

“He said he learnt new things. He became a father. He said because of our relationship, he got to have a life he wanted but never imagined having.” Claudia’s body stilled and her mouth turned down. I responded tentatively, “Would you mind sharing with me a little more about this good life that your relationship gave Tom?” I hesitated. “Might Tom have said it was a longed for life?"  

“It was a longed for life,” Claudia replied emphatically. She wrapped her arms around her body as if to hug herself and began to recall how she met Tom and the friendship they shared. The words came out quickly matched by the tears that fell from her eyes. After a few minutes of talking, Claudia slowed, releasing her arms from her body, and sat back on the sofa. “He said he’d always been on the outside and never felt like he belonged. It all changed for him when we were together. We both valued friendship and loyalty and it built our relationship.”  

I was spellbound by what they had given each other. “People mean many things when they talk about friendship and loyalty. What were yours and Tom’s understandings and how did they show in your relationship… that had Tom moving from feeling on the outside to stepping inside and experiencing belonging, friendship, and love…a longed for life?”

It was a long question and I said it slowly with expression. Claudia stared at me attentively. Eagerly she replied, “We had each other’s backs. Even if we didn’t agree, we always loved each other. We respected our differences and opinions. Our love was always there even in the way I cared for him. When Tom got sick, he said it changed how he dealt with having cancer.”

“How did this love you shared and the loving ways you cared for Tom influence how he lived with the cancer?” (18)

Claudia leant towards me, seeming oblivious to anything other than what she was about to express. “It meant he could go on enjoying his life. We were good at loving each other. We both changed and grew because of the relationship. I will never have another like it. It kind of gives me more to hold on to, and I keep saying to myself how grateful I am for my relationship with Tom, but it’s also so much more to lose.” Claudia lowered her voice, her passionate tones fading rapidly, and almost whispered, “I’ve been on the edge of a cliff for so long knowing there was a chasm ahead of me. I know I’m falling into it now but there’s this numbness. I hate it. It disconnects me from Tom. It’s like this isn’t real and it is.”

I reflected on the enormity of such a loss and Claudia’s ability to express gratitude at such a moment. “When you’ve had such a special relationship which both gives you more to hold on to and more to lose, how do you understand this sense of numbness?” Claudia nodded when I gave weight to the words “more to lose” and then replied hesitantly, “It’s an anesthetic. My body being kind maybe.”

“What does this sense of numbness speak to about the relationship you have with Tom and the magnitude of the loss do you think?” I wondered if the numbness was an expression of their close connection, and the magnitude of the loss Claudia was experiencing.

Claudia straightened her back and lifted her chin. “Tom dying is bigger than any loss I have been through before. Other people I have loved have died but nothing compares to this. Nothing!” She uttered the words emphatically as if arguing with an unseen audience. Then, making eye contact with me added, “Does that make sense?”

I nodded as she spoke, reflecting that she was in a much more informed position to speak of this than I was. “Losses are not the same, relationships are different, and circumstances are different. Would it be OK to ask what it is that contributes to Tom dying being an incomparable loss, the biggest loss you have ever experienced in your life?” I wanted to fully acknowledge her experience. (19)

Claudia wriggled back on the sofa unfolding her arms. Her chest rose as she took a deep breath. “He has been the most important person in my life. He is my best friend. I don’t want to forget.” I remembered h

Deciding How to Die: Narrative Therapy in Palliative Care with Someone Considering Stopping Dialysis

Acknowledgements

Thank you Larry Zucker, Aileen Cheshire, Timothy Pilkington, and Catherine Cook for your valuable comments and questions when reading earlier drafts of this story, and David Epston for your encouragement and insights throughout the many iterations.

An Introduction

Living with a life-ending illness can raise questions where there is no clear “right” answer. The following illustration of Narrative Therapy focuses on conversations with a man who was tortured by indecision as he considered whether to stop dialysis. Stopping dialysis would lead to his death. This story of our work together illustrates narrative therapy practices that can help to restore dignity, witness suffering, enhance meaning-making, and offer a person a sense of agency as they approach death. Accompanying the illustration of therapy are footnotes. The footnotes [Ed. Note: To be found in the original article] explain more about my thinking and the ideas behind some of the questions that I asked. They also describe how I have applied ideas drawn from philosophy and Narrative Therapy to practice in palliative care. You can choose to read the story of the therapeutic conversations and the footnotes either together or separately.

Deciding How to Die

“Please would you see Mr. Fionn Williams as soon as possible? He has end-stage kidney disease and is having dialysis three times a week. Fionn is being cared for at home by his son Liam, and Liam’s partner Pete. Every week, Fionn decides to stop dialysis only to change his mind at the last minute. This has been going on for months and he and his family are very distressed. Fionn describes himself as “tortured” by his indecision. Dr. White has discussed stopping dialysis with Fionn and his family a number of times. Fionn knows he doesn’t have long to live, and his quality of life is very poor, however, his indecision continues. Fionn has refused counselling support every time it has been offered, but yesterday, he changed his mind. His family are relieved he has accepted counselling and are waiting for your call.”

I rang Fionn immediately.

Reviving Dignity and Meaning

Fionn’s son Liam greeted me at the front door. Liam was a tall, lean man, in his thirties I guessed, with a welcoming manner. He invited me into a tidy living room to sit down and then excused himself to let Fionn know I had arrived.

Fionn hobbled into the room leaning on Liam. I stood up to greet him and, as he caught my eye, we exchanged a brief acknowledgement. As Fionn came closer, I could hear him breathing heavily. He was dressed in winter pyjamas and a heavy cardigan despite the warmth of the day. The grey hue of his skin and the care with which he nursed his body through each step made him look older than his 74 years. Unlike Liam, who had a deep red beard, Fionn was clean-shaven, but it was easy to see that they were father and son due to their similar statures and light blue eyes.

Liam supported his father into the comfortable looking chair beside me that I had carefully avoided sitting in. Fionn gingerly settled back into the chair and looked at me.

“Are you the one who’s come to analyse me? I’m quite curious to hear what you make of me,” he rasped crisply.

I smiled warmly as I leant forward to shake his hand, choosing to respond to the possibility of humour in his comment and to my hopes for the relationship rather than the crispness of his tone. “My name’s Sasha, I’m one of the counsellors from the hospice. I’m looking forward to talking with you, though I’m more interested to hear what you make of you and your experience.” I was aware that being a 58-year-old woman with a soft voice and a big smile might have added to this introduction some of the care I wished to convey. I was generally just what people expected when they agreed to see a counsellor working for hospice and that could ease our first moments of getting to know each other.

Fionn chuckled. Liam turned to his Dad with his eyebrows raised and a slight smile on his face. In a tone of pleasant surprise he said, “I’ll leave you to it Dad, so you can have some privacy.”

Fionn immediately replied, his voice wobbling as it betrayed the toll even speaking had on him, “No, no, you stay. I haven’t got any secrets from you.”

Liam responded by pulling up a chair so that the three of us sat around the coffee table. “Alright then but I’ll have to leave shortly Dad. I’ve got a few things to do.”

They both then turned and looked at me.

“Would it be OK to begin maybe, with me asking you a bit about yourselves?” I offered tentatively. Liam nodded and, looking at Fionn, I explained further, “… so that I might know a little of who and what matters to you. I find people are so much more than their current situation.”

Fionn’s tone was abrupt. “Sure,” he croaked. Before I could respond, Fionn heaved his body forwards gasping at the air as if unable to get enough of its vital oxygen.

I waited, watching until his breathing eased.

Once Fionn could speak again, he explained, “It’s like this a lot… very hard to breathe… If I start to cough, it’s going to interrupt us. Did they tell you it takes a while to settle it down?”

I wondered if the struggle to breathe was behind the severity with which Fionn expressed himself and reflected that he might be anxious or even afraid. Feeling so sick could be overwhelming and here he was risking meeting a stranger on top of everything else.

I spoke with sincerity looking into Fionn’s faded blue eyes, “I’m sorry I didn’t know that. Thank you for seeing me. If you start to cough, is it OK if I sit with you or is there something else you’d like me to do? I’d like to do whatever is most comfortable for you.”

Fionn’s voice softened. “Just wait for me to stop. I do eventually.”

“I’m happy to wait. I’m in no hurry. Please take all the time you need to be comfortable without worrying about me,” I said warmly, trying to reassure Fionn that he didn’t need to consider me.

I reflected that people often have to cope with the responses of others on top of the symptoms they are managing, and briefly wondered what Fionn’s experience had been.

Liam chipped in with, “Dad has some medication for it but basically nothing can be done. He puts up with a lot.”

Nodding at Fionn in acknowledgement, I considered pursuing what he was putting up with but then thought it might be more useful to come back to it later in the conversation. We didn’t know each other, and I wanted to create with Fionn an entryway into a space where his experience of illness and treatment could be spoken about without compromising his dignity.

Fionn helped me out by indicating where his interest lay.

“Yeah…so we were doing some introductions. What do you want to know?”

Guided by Fionn’s question, I reiterated, “Would you mind telling me a little about yourself to start with perhaps?”

Speaking to the floor, he answered, “Not much to tell… haven’t thought about anything much other than trying to get through each day for ages. Let’s see now…well, for a start you can call me Finn. It’s what my friends call me”.

I smiled appreciatively, thinking of his generosity in extending me his friendship. “Thank you, Finn. Is that Irish?”

“Yeah. My grandparents came out from Ireland.” He lifted his eyes from the floor and focused on a nearby corner.

The Sustaining Power of Music

I turned my head to look with interest.

Finn leant forward, and in spite of his weakness, managed to convey a flicker of enthusiasm. “Played it for years. It had a beautiful mellow sound until last year when I went downhill and couldn’t play it anymore.” Finn hung his head with his body seeming to follow as he collapsed back in his chair.

“What a beautiful instrument. How did you come to learn the cello?”

What could have been a hint of pride entered Finn’s voice as he raised his eyes to meet mine. “My Dad taught me and then I’ve practiced over the years.”

“How old were you when your father began to teach you?” I asked.

“Just a young nipper. Must have been about seven I s’pose”.

“Gee, that’s young. What did your father see in you that made him think he could teach you the cello when you were only seven years old?” I exclaimed.

Finn furrowed his brow thoughtfully. “I s’pose he knew I’d work at it. I’m not one to take something lightly, if you know what I mean. You have to start out young with strings ideally.”

I leant forward to better hear Finn as I asked, “When you say he knew you’d work at it and not take it lightly, would you mind explaining a little more of what you mean?”

“Well….”, Finn hesitated, “Dad knew I’d practice, and you’ve got to do that if you want to learn to play… especially with a stringed instrument. You have to make the notes you see. Even when I was a boy if I set my mind to something, I’d keep going with it.” Again, I noted a glimmer of what could have been pride in Finn’s demeanour. My keen interest must have been evident on my face. When Finn caught my eye, he explained further.

“When I was 4 years old, I decided I wanted to ride an old two-wheeler bike and there was just no way anyone was going to stop me trying. Did it too in the end. Just kept going till I did it.” Finn glanced at me again with a small smile transforming his lined face for an instant.

I responded immediately caught up in the picture he had drawn of himself. “What do you call this ability to keep going with something you want to do?”

“Grit, I guess. I’m a hell of a determined kind of fellow.”

“You sure are, Dad,” Liam echoed.

“What have you come to respect about your Dad’s grit and determination, Liam?” Finn peered at Liam while Liam told a story of Finn never leaving a job unfinished even if it became frustrating and difficult. Liam glanced at Finn as he spoke, seeming to check he was listening.

“Finn, has this ability to apply grit and determination shown up in other areas of your life?”

“Yeah, pretty much everywhere. I would have been dead by now if I hadn’t had it. It’s important to do your best at things and not cop out.” Finn’s certainty suggested to me that this was a quality he valued.

“Would it be too much to ask for another story of you giving of your best with grit and determination?” I enquired, aware Finn had little energy and might want to save it for other matters.

Finn began to give me other examples with Liam chiming in and sharing with me his father’s persistence in living with his disease. When we had gathered a collection of stories of Finn’s grit and determination, I returned to another piece of information he had shared.

“You also mentioned your father taught you the cello as he thought you would enjoy music. Do you think your father had some hopes for you in teaching and encouraging you further into a musical world?”

For a moment, light danced in Finn’s eyes softening the lines of weariness that marked his face. “Music always gave my Dad joy. He loved it and he wanted to pass that on to me. He did too.”

“Like your father, do you get joy from music?” I asked. Finn nodded in agreement. “Is this something you are still able to experience even now when you have so much to contend with?”

“Well, yeah,” Finn said, sounding surprised by himself. “…Especially if I’m listening to the Bach cello suites… beautiful.”

“What does this ability to appreciate music and to feel joy from listening to it give you day to day, especially at this time when you are living with some serious health issues?” I chose to narrow our focus to day-today living to reduce the size of my question.

“There isn’t much that I can do anymore. I used to be a landscape gardener. That’s gone! Liam and Pete keep my garden up for me now. I do appreciate what they do. But every month there’s another thing I can’t do. Listening to music is something that keeps me going I guess.” Resignation was thick in Finn’s tone.

I tried to imagine Finn’s world. “What is it about the experience of listening to music that keeps you going?”

Finn hesitated as he considered. “It takes me to another place.”

I was fascinated. “Would it be OK to ask where it takes you?”

Finn dropped his shoulders and his face relaxed. “Ah…it takes me back to happier times.”

I asked Finn about these happy times, and he responded readily, sharing some treasured memories. I then returned to an earlier thread of the conversation.

“When did you first notice that you could take yourself to another place while listening to music, even when you were unwell and perhaps had the pain and sickness to draw you back?” I framed my question in such a way that Finn might notice this as an ability and something he was doing. I was aware that a person’s experience of illness could rob them of a sense of having influence over their life.

“In the last year or two at dialysis… I couldn’t read… or concentrate… so I listened to music and it made the time better. I got sicker but it was a habit by then and, well, I’d done it every time. I was kind of used to it.”

“Used to it?” I queried, half to myself as I reflected, searching for a link to Finn’s increasing skill as he got less well.

“I’d kind of practiced it I s’pose…,” Finn explained.

My ears pricked up. “You practiced it? How did you go about that?”

“It’s just what I’ve always done. I started doing it more and more. Certain pieces are better than others. The 1812 Overture doesn’t help pain but if I’m feeling like I need a boost, it’s just the trick,” he shared with a small smile.

I furrowed my eyebrows as I reflected on what Finn had just explained. It seemed like he might have developed a number of skills to manage the symptoms he was experiencing and, hoping to draw these possible skills to Finn’s attention, I offered a brief summary for him to consider. “Can I just check that I’ve understood you right?”

I waited for Finn to indicate if it was alright with him for me to proceed. When he nodded with attention, I continued, “Have you worked out which music helps you live with this and have even discovered particular pieces of music are helpful to you at different times depending on how the illness is affecting you?”

“Well, yeah,” Finn exclaimed, looking pleased and surprised at the same time. He glanced at Liam who gave a firm nod and smiled with encouragement.

“And you said you’d practiced. Could you help me understand a bit more about this practice you’ve been doing?”

Liam and I both turned to Finn who looked as if he was enjoying himself. “I found if I knew the piece… well, I was more relaxed, I guess. It was easier to forget the bad stuff and relax… So… I listened to music I liked till I knew every note. It used to help. Not so much now. I’m too far gone now. Listening to music is one thing I can do though. That counts for something. There isn’t much… Liam and Pete sometimes come and sit with me, and we listen together.”

“It’s a nice time together, Dad. We enjoy spending it with you,” Liam added, as if trying to convince his father. Finn raised his eyebrows and gave Liam a tired smile as if he didn’t quite believe what Liam was saying.

I turned to Liam. “What is it that you enjoy about spending time with your Dad?”

“It’s nice to be together as a family…” he replied with a sidelong glance at Finn.

“Liam have you learnt anything from your Dad’s grit and determination or his ability to appreciate music and be taken to another place that has been useful to you in your life?”

Liam let out a big breath as if gathering some resolve. “It’s been enormously important to me. I had a tough time at school. I was bullied a lot. Mum was always supportive, which meant the world to me, but it was Dad who taught me how to keep going and not give in to it.” Finn looked down and shook his head slightly. Liam turned to his father trying to catch his eye and said, “You taught me how to survive, Dad.”

Finn muttered, “Wish I could have done more…I didn’t realise how tough it was for you.”

“Attitudes were different then. You’ve been wonderful since Mum died, having me and Pete here and all. Dad, I survived because of you and Mum. Both of you.”

Finn’s eyes glinted with tears as he reached out to Liam. They clasped hands for a moment. A small smile emerged on Finn’s face and his forehead relaxed. Liam lowered his shoulders and released a breath as he looked again at his father.

“Finn, what is it that you wish you could have done for Liam?”

Finn looked steadily at me but his words were for Liam. “Been there for him… understood more…protected him, I guess. Beth was better at it than me.” He turned awkwardly towards his son, moving his chest carefully around until his eyes eventually found Liam’s.

Liam choked up. He managed to croak, “Oh, Dad. That means a lot,” before emotion silenced him.

We sat together not speaking as we quietly honoured what had passed between Finn and Liam.

After a few minutes Finn began to cough. Liam touched his back lightly waiting patiently for Finn to settle. When they both looked at me indicating their readiness to continue, I asked Finn, “Is there anything in particular you would have liked to have understood, or maybe protected Liam from, that you would like to speak about today?” I was aware that Finn might die at any time and such a question could lead to further acknowledgement and connection that might be helpful for both Finn and Liam.

We continued talking together in this manner. Bit by bit I researched, listening out for what was important to them in their lives, their good intentions, skills, beliefs, and hopes. When we encountered acts of kindness, loyalty, love, and any virtue they might value, I asked more questions. Finn talked about his wife Beth, fatherhood, the important relationships in his life, and his work.

Twenty minutes later, Finn signaled a wish to change the direction of our conversation. “It’s all been taken away, Sasha. Bit by bit. I was an active person with a full life. Now all I’m left with is this terrible sickness.”

Exploring the Impact of Finn’s Illness

Finn seemed to welcome the opportunity to talk. “I’m fainting every day, and this pain…” Without seeming to know what he did, Finn held his ribs. He was clearly uncomfortable but carried on speaking though hopelessness seemed to hover nearby as he spoke. “I never have any energy and I feel so sick I don’t feel like doing anything anyway. I’m so nauseated I can’t eat, or not much. Nothing tastes good. I can’t even sleep and I’m not nice to be with. Irritable. I want to die. I’ve had enough. I want to die.”

He sighed but the reflective pause was denied him as the next moment he coughed and choked, gasping as his face became greyer with every minute. Liam immediately bustled away to get some medication while I stayed providing companionship as Finn struggled to breathe. It took 10 minutes for the medication to settle Finn’s breathing, and longer for him to relax.

Once Finn was comfortable again and his breathing had eased, Liam reluctantly explained that he needed to go. There was medication to pick up and other jobs to do. I thought about the extra work and expense that often came along when someone is very sick.

The front door shut noisily a few minutes later. Finn and I were alone in the quietness of the house.

“You were speaking of how each part of your life is being taken away bit by bit from you and you said you’d had enough and want to die. Would you mind if I asked you a few questions about that?”

“Go ahead,” Finn replied, and I noted the warmth that had become increasingly present in his voice.

“Is there anything in particular that has been taken away that leads to this sense of having enough and wanting to die?”

Finn spoke with energy as he confided, “It’s all of it but mainly that I feel so awful. I wish I’d hurry up and die but I keep waking up every morning and another day starts.”

I tried to convey care in my tone as I responded, “Would you mind explaining a bit more of what you mean when you speak of wishing you would ‘hurry up and die?’”

Finn sighed. “I want to go to bed and not wake up in the morning. Tonight preferably. Every day is a struggle.”

“Could you help me understand what your day-to-day life is like, Finn? Would you be kind enough to walk me through a typical day for you perhaps… so that I can better understand a little of what this struggle is like for you to live with?” I tried to shrink my question about the struggle Finn was experiencing into a more manageable size by offering a time frame, so it wasn’t overwhelming.

Finn shared with me his daily routines. As I listened, I could easily empathise with why he might be feeling like he’d had enough. The effects of being unwell sounded exhausting. Hearing about Finn’s day-to-day life allowed me to gather some detail, and as he talked, I asked him how he responded to each difficulty or symptom he encountered. I noted how eagerly he spoke to me in spite of the fatigue he was managing and the topic of conversation and wondered if he’d had the chance to speak of his efforts in response to the difficulties.

When a pause occurred in the conversation, I checked with him, “How are we going with this conversation, Finn? Are we talking about what you hoped we might, or have I taken us off track?”

Finn relaxed back in his chair. “It’s actually a relief to talk about it, Sasha. I don’t want to worry Liam and it’s different saying it out loud somehow.” I wasn’t surprised by Finn saying that he didn’t want to worry Liam. People I meet often want to protect those they love from the worst of their experience.

“Finn, how would you describe the changes you’ve had to make to your life as a result of this sickness?”

Finn picked at his cardigan meditatively as he considered my question. “It happened gradually. When I first got sick, the dialysis really helped. I felt good and I could enjoy being outside and in the garden. I was able to keep working for quite a few years. But now, I feel terrible all the time. It’s been all downhill. I can’t work of course. I can’t do anything. Liam cooks for me and I have help showering. Last week I started falling. That’s on top of the fainting. And of course, I have to go out to dialysis three times a week. That’s always a huge effort.”

“Could you teach me about your experience of dialysis?” I asked, wondering what it was like for him.

“A taxi comes and picks me up ‘cause Liam and Pete are at work. It takes me to the hospital. All the people having dialysis are in a special room hooked up.” Finn sighed.

A picture formed in my mind. “Do you get to know the other people there?”

“We don’t talk to each other. We just all stay on our beds there. There was one man who would talk to everyone in the room and got people chatting a little but then one day he didn’t come back. I don’t know what happened to him. People do gradually stop coming back but I don’t know exactly why. I wonder about them you know…. have they died or did they decide to stop?

“In the end it’s a bit of the same thing I suppose…” Finn sighed and his shoulders sagged. I had imagined the people all sharing their experience and learning about each other’s lives, maybe finding some support in being together. Finn’s description was a surprise and it contrasted with the stories I had heard from other people. I briefly considered what Finn had told me and thought of asking about the effects of not connecting to the other people receiving dialysis. However, I decided to take another tack which I hoped would be more useful to him.

“May I ask, what were your hopes and intentions when you decided on this routine of attending dialysis three times a week?

“I wanted to live! And I wanted to have a good quality of life…I was pretty sick then. I’d been in and out of hospital, had three operations and endless tests. Beth was alive and we wanted to be able to do things together that we’d planned….and support Liam. It seemed a really good solution at the time. I didn’t hesitate. I wanted to feel well again. The dialysis saved my life… and if I stop, I’ll die.”

I nodded solemnly to acknowledge the magnitude of what he was facing and we both paused for a moment. “…Were your hopes met by the dialysis treatment?”

Finn explained, “Yes, they were at first. I was able to do things with Beth and I felt good”.

“As the years went by, did these hopes and intentions you held for the dialysis shift or change in any way?”

Finn answered me thoughtfully. “They changed without me knowing, if you know what I mean. I got sicker as my disease progressed. I s’pose I’ve just kept on going to dialysis as I don’t want to feel so sick. But then there are side effects as well, not as bad as the disease of course, but bad enough, and the visits to the clinic take a lot of time.” He paused a moment and frowned. “It’s different now. I don’t know what to think. I want to die. Every morning I wake up and I think I’ve had enough. I can’t live like this anymore. I’d rather just not wake up one morning.”

Exploring Finn’s Wish to Die

Finn hung his head. “Well…yeah…that’s right. I know I should stop dialysis, but I can’t seem to make the decision. Yesterday I thought I was going to stop but then I couldn’t go through with it again. I’ve been doing it for months. It’s awful, not just for me. I’m putting Liam and Pete through it too. I’m letting everyone down. I’m such a coward.”

Tears filled his eyes.

I reached out, moved that he would judge himself a coward when such a decision would try most of us deeply. “Would you like to try and figure this out together?”

Finn took out a large handkerchief from a pocket in his cardigan. He dabbed his eyes with the folded hanky before slipping it back into his cardigan. “Yes, yes, that would be good,” he responded looking at me with what might have been a glimmer of hope.

I considered what might be a helpful direction to go in. I was tempted to inquire about Finn’s idea that he was a coward but reflected we might first need to carefully research his experience of decision-making. Perhaps we could unravel some of the ideas that were leading Finn to feel he was letting people down and “should stop dialysis.” He might then be able to arrive at some different ideas about himself. “Would it be OK if I asked you about your thoughts about dialysis and what you want?”

Finn nodded.

“I notice that you said you were thinking that you should stop dialysis. Could you help me understand how you came to think stopping dialysis was something you were supposed to do?”

“Lots of ways. Dr. White said he couldn’t do any more for me than what he’s doing. He said there comes a time when dialysis just doesn’t work so well anymore, and the disease has progressed too far. I know he’s worried about me.

“Last time that I was in hospital some of the ward staff talked to Liam and Pete and said I was so bad that they should try and help me stop. It’s expensive too, and I could be taking someone else’s spot. I feel so terrible, but I just can’t seem to do it.” Finn’s voice tailed off into a whisper. At the same time a pink flush appeared on his neck and began spreading up towards his face.

“It sounds like people are worried about what you are putting up with and there is quite a tide of thought towards thinking it would be a good idea to stop…May I ask you though, Finn, do you have any thoughts about how you would like to go about this last part of your life?”

“I don’t want to be like this, worrying all the time and feeling such a chicken… I don’t know…” Finn rested his head in his hands and looked down at the floor. I waited as he considered what he might want. Eventually he murmured, “I want to be enjoying my life… spend time with Liam and Pete… Quality of life I suppose. The dialysis gave me that for so long. I wanted it then, but it started to change.”

“Can you remember how it began to change?”

“Yeah. It was a few years back and I was admitted to hospital. I started to have a few doubts about it then.”

“Do you remember any experiences or thoughts that led you to having these doubts and perhaps consider that dialysis might not be completely what you wanted?” I asked, wanting to acknowledge the mixture of possibly conflicting feelings as we researched the movement in Finn’s thoughts.

“I guess as I started to have some problems and was less well. After Beth died, I had a few doubts. I started to think I might not want to prolong my life but then I had some projects on, and time kept passing. As the dialysis worked less well, I thought about it more. When I started to feel awful, even though I was having it, I wondered, ‘what was the point?’ Then I got more side effects after each dialysis session. I had to have another operation too and that made me think I might want to stop. But there was stuff to do, and it just stayed in the back of my mind.”

“Would it be OK to ask what happened to the idea that it wasn’t completely what you wanted? Did it stay with you unchanged or did it begin to change over time?”

“As I got sicker, I thought about it more and more, I suppose…now that I think about it. I didn’t know if I could keep going. I got really irritable with everyone…wasn’t nice to live with. I guess I started to think about how bad I was feeling and whether I should keep going all the time.” Mournfully he added, “I want to be able to decide to stop and I can’t.”

I didn’t make any attempt to hide my compassion for Finn from my face or my voice.

“What a terrible position to be in. If you were to describe to someone else this weighing up you have been doing of whether to continue with your life, how big of a decision would they think this was?”

“Huge. It’s the only one I’ve got!” Finn smiled wryly in spite of himself. I nodded in acknowledgement.

“As you both want to die, and at the same time, consider whether you can go on with your life, what do you take into account?”

“I guess it depends how I’m feeling. Most of the time I feel like I can’t even make it through another day I feel so bad…I decide I can’t take it anymore and won’t go to dialysis but then I change my mind again like I did yesterday.”

As I listened to Finn, I noticed that the thought of stopping dialysis seemed to be specifically linked to the feeling he couldn’t bear the symptoms he was experiencing. I decided it might be helpful to gather more information. I also wondered if introducing the idea of possible agency in Finn both “deciding” and “not deciding” to go to dialysis might be useful to him. His description of himself as a coward loomed large in my mind.

“Hmmm…Finn, would you mind walking me through how you came to decide yesterday to stop dialysis and then re-considered and decided to continue?”

“Well…I couldn’t eat yesterday the nausea was so bad. I’d been awake a lot in the night, and I was feeling so terrible. All I could do was sit in my chair. I’d had enough… It felt like I couldn’t go on. So, I decided I wouldn’t go. But then I changed my mind at the last minute again. Made me late…”

Concentrating hard I asked him, “Could you walk me through sitting in your chair to you deciding to go to dialysis?”

“I was sitting in my chair feeling so terrible I wanted to die… and then Sue, the wife of an old friend, came to the house with a cake. I couldn’t eat any of course. Then I sat in my chair. And…half an hour later I thought maybe I’d go.”

“What sort of cake did Sue bring?”

Finn raised his eyebrows. “It was a chocolate cake she’d made.”

I reflected on Sue’s kindness. “Did she make it especially for you?”

The pace of Finn’s speech quickened, “Yeah, she did. Nice person. She often pops in with my mate or sometimes on her own with some cooking and we have a chat. She’s a sympathetic woman.”

“May I ask what difference it made to you to have Sue pop in with a cake she had baked especially for you and have her stay for a bit of a chat?”

“I dunno. I guess it felt like life wasn’t so bad maybe.” Finn sat up a little straighter in his chair.

“What was it about your life in that moment that made it seem ‘not so bad?’” I asked, collecting more details.

Finn spoke with gratitude, “There are good people around. Kind people who are interested in me I s’pose. Makes me think life isn’t so bad after all.”

“How would you say feeling ‘life wasn’t so bad after all’ influenced the way you felt about going to dialysis?”

“Well…I do wish I didn’t wake up this morning but yesterday, well, I felt I could go on, that things weren’t so bad…and… so I went to dialysis,” Finn replied meditatively.

“Do you both want to die and value some of what your life gives you?”, I persisted.

Energy penetrated Finn’s voice, “Well…yeah! I never thought about it like that.”

“Would it be OK if you gave me another example of you re-deciding to continue on with your life?” I asked, intending to examine this idea further.

Finn began to give me examples of him deciding to stop dialysis and die because he felt he could no longer go on, and then finding some reason to continue on with his life. Sometimes it was a gift from someone, a kind act, a moment of respite from the symptoms he was living with, or even a phone call. I discovered that he was skilled at finding things to appreciate and reasons to continue with his life.

“Finn, do you both want to die and value some of your life?” I repeated with a smile.

He responded, “Well, yeah. It doesn’t sound like it makes sense but yeah!”

“When you start to feel overwhelmed by the symptoms of the illness or the side effects of dialysis, what happens to this valuing of your life?”

“I don’t know. I lose it… I feel overwhelmed. Then someone does something nice and I remember it again.” Finn looked up with a small smile on his face. I noticed with admiration his gratitude for the people in his life.

I was tempted to research more about this value Finn held for his life, but time was running out and he was starting to look fatigued. I made a mental note to return to it if we met again and instead decided to pursue the way he described himself.

“Finn, you described yourself earlier as a coward. Would it be OK to ask you what your understanding of a coward is?”

“Someone who runs away…is chicken and doesn’t face things,” he muttered, a bit shamefaced.

Slowly, I summarised a little of our conversation. Finn nodded as I recapped, “You’ve talked about wanting to die and deciding to stop dialysis…but then being reminded of the value you hold for your life by appreciating someone or something, and then re-deciding to continue with your life by going to dialysis. Would you describe this as running away from death — as cowardly — or is it perhaps closer to moving towards living, appreciating it, and being connected to what you hold dear?”

Finn stared at me wide eyed. He managed to stutter, “Well…yeah, my life…yeah, I’m doing that…not running away…no, not running…”

I repeated my question, offering a little more for him to consider. “Are you valuing and respecting your life even as you wish to die?” Finn nodded. “Does that valuing perhaps connect you to living and make ‘having a hand’ in the timing of your own death more difficult to contemplate than most of us could possibly imagine?”

Finn nodded again. Tears flowed down his face as he stared at me unblinking. He reached into his pocket for his handkerchief.

“I’m not a coward,” he croaked.

We sat together with Finn mopping his face with his handkerchief. He sat, no longer hunched or downcast, but upright, making eye contact with me from time to time as he continued to pat his skin dry. Every now and then his face lightened, and a small smile emerged.

In a whisper he repeated to himself as he patted the tears away, “No…I’m not a coward…”

We were coming to the end of our time together and I noticed Finn was beginning to look weary. After a few more minutes of conversation I finally checked, “Is this a good place to stop?”

“Yeah. It probably is.”

Tentatively I asked, “Would you like to meet again?”

“Oh, yes. Can you come back soon? In a few days?”

I was aware that Finn could die at any time or in the next few weeks. Time has a different meaning when someone is approaching death and that meaning has a role in shaping the gap between counselling meetings as well as the length of them. I looked up from my diary and smiled at Finn, “I’ll be back at work on Wednesday. That’s five days. How does that suit you?”

“Yeah, yeah. Come back then,” he answered hastily returning my smile.

Getting Curious About Fear

“I’m still here,” Finn stated ruefully. His voice scratched over the words as he explained, “I knew I’d go for treatment this week. I nearly couldn’t get out the door. I was vomiting and it was almost too much, but somehow I managed…your hospice doctor visited afterwards and it’s better now…”

My speech slowed to match his. “How did you know you’d go for treatment?”

Finn’s eyes twinkled. “I pretty much decided after you left last time. I figured I needed a bit more time to work things out.”

I gave a small smile in return. “What made you think that it might be helpful to give yourself a bit more time to work things out?”

Finn immediately looked serious. “I’ve been wondering…You must have seen people like me. I feel so bad now…how much worse is it going to get? I’m kind of wondering about what it might be like…you know, dying…” Finn’s voice trailed off. His face was drawn and tense. I could see a pulse at his temple moving his papery skin rapidly in and out.

I wondered if fear could be playing a role in making it difficult for Finn to know what he wanted. “Would it be helpful to talk about your wonderings about dying?”

Finn raised his chin though his voice had a tremor, “Yeah…might be.”

“Is it OK to ask which part of dying you have been wondering about?” Some people I meet with are more worried about the process of dying while for others their biggest concern may be about how family will cope or what it might mean to be no longer alive. I didn’t know where Finn’s attention was focused.

Finn drew his eyebrows together and shifted in his chair. “The dying part. It’ll all be over when I’m dead. I guess I’m wondering what it’s going to be like…might not be too good…might be painful.” He looked up at me with wide eyes.

I was aware from the hospice doctors that Finn might feel very sick when he stopped dialysis but the medical staff had also spoken of what could be done to help Finn. Dr. MacDonald had also told me that this information had been explained to Finn many times. With this in mind, I wondered if it might be helpful to draw out the narrative of what could be done to support Finn.

“What did the doctor say they could do to help you should you start to feel sick coming off dialysis?”

“She talked about one of those pumps…that make you relaxed and give you pain relief all the time…” He glanced at me as if checking this was true. I nodded in response.

Finn and I continued to talk. As we spoke, it became apparent that he was now voicing fears and considering the end of his life in a way that until now he had not been able to. Finn repeated to me the information he had been given by the doctor. As we revisited what Finn remembered it seemed to reassure him. It was as if Finn had been unable to consider and absorb the information until that moment, he uttered the information himself.

Finn rounded our discussion off with, “I’ve just got to decide and follow through with it… whichever way.”

“Would it be OK if I asked you about this desire of yours to make a decision and to follow through with it? Have I got that right?”

Finn nodded. “Yeah, that’s right. Sure.”

“What makes it important to you to decide and then follow through?” We both knew he didn’t have long to live regardless of whether he stopped dialysis or not.

I looked over at Finn who was shifting stiffly in his chair. Noticing he had more to manage than just my question, I elaborated a little, conveying in my tone as much care as possible. “If you were to die, say in your sleep having decided not to decide one way or another about going to dialysis, how would that sit with you for example?”

Mournfully, Finn intoned, “My soul would know. I’d die feeling like I’d copped out and I hadn’t looked after Liam and Pete. It’s hurting them. I have to decide one way or the other. I feel like I can’t live properly while I can’t decide. It’s with me all the time.”

“Mmm…” I empathised, my complete attention on every word. “What do you imagine it might feel like to have made a decision about what you want to do?”

Finn sighed. “Peaceful…”

“If you were to decide, how would you know if it was a decision that you would want to follow through on? That it was a decision to be acted on?”

“I guess I would know if it was my decision and I thought it was the right thing to do. Not what someone else thought was right but what I thought. I’ve been thinking about what I told you last time.”

“How would you recognise a decision that was yours and right for you?”

“I would feel it in here,” he replied, putting his hand over his heart, “…not in my head. I wouldn’t worry all the time.”

I considered asking Finn if he could envisage any steps that might take him in the direction of deciding but wondered if it might be too hard of a question, which would not be helpful. As I was pondering, Finn repositioned himself again in his chair groaning quietly with each movement. “I just feel so bad, Sasha. I’m so tired from all this. It’s gone on and on. Everything’s a struggle.” He sighed heavily.

“Which parts of the struggle are you noticing as we talk, Finn?”

“It’s the pain. I can’t seem to get away from it today,” he groaned. Rather than ask him about the pain which had already been canvased in depth by the two of us earlier, I enquired, “Finn, what keeps you going day to day when you are living with pain that you can’t get away from as well as many other challenges caused by this illness?”

“It doesn’t feel like I’ve got a choice, Sasha. I just keep on keeping on like I’ve always done.” I waited as he seemed to contemplate. A small smile crept onto Finn’s face. “There’s one thing though. See those buds there?” he said, pointing to some bulbs outside the window. “I’m waiting for them to flower.”

“What is it about waiting for the buds to flower that has you keeping on with your life?” I wondered, curious.

“You just never know exactly how they are going to flower and that moment when the petals unfold…so beautiful.” Light crept into Finn’s eyes and his brow relaxed as he talked about the plants he had delighted in nurturing most of his life. I was fascinated by his ability to appreciate beauty and asked him about it. When he had concluded I decided to research further.

“What else supports you to keep going as you manage this disease?”

Apologetically, Finn explained, “I’ve never watched much TV, but Pete and I have been watching Downton Abbey together. We both like it. I keep wondering if Edith’s going to be alright.”

I grinned. I wanted to know too!

As we talked, I reflected that there were many aspects of Finn’s life he had found a way to enjoy. As the list grew longer, I marvelled at his ability to adapt to his circumstances. If I had guessed at that moment, I would have imagined Finn would decide to continue with dialysis for as long as possible.

I finally asked him, “You have spoken of finding ways of enjoying parts of your life in spite of all that you are managing, of things you are looking forward to and times of companionship. Is there anything you’d like to add that’s important to you in the keeping on going?”

Finn screwed up his face concentrating. After a pause he said with generosity, “Well…Liam is important… and Pete his partner. I want them to be happy.”

I could see Finn was tiring. He had begun to cough, and his speech had slowed. I carefully summarised what we had covered, checking with him as I spoke. We then arranged another time to meet the following week.

As I picked up my bag and got ready to leave, I turned at the door to say a final goodbye. Finn smiled at me. In what could have been a mischievous tone, he sent me on my way with, “You know, Sasha….I have hope for my life!” His smile became a grin and I left, uplifted by the manner of his goodbye.

Deciding To Die

Five days later I sat in the morning meeting unable to focus. I heard conversations around me but they passed me by. All I could think of was the news that had greeted me when I walked in the door. Finn was in the hospice inpatient unit. He had decided to stop dialysis. Finn was dying. As the news reverberated through me, some of the staff offered their praise. They understood Finn’s decision as the right one given his poor quality of life.

“That’s good work you’ve done, Sasha. That poor man was suffering so much,” a colleague said.

The kind words didn’t ease my mind though. Dominating my thoughts was the question, “Was this what Finn truly wanted? Was it right for him?” My internal agitation made its way to the surface, and I moved restlessly in my chair. I could hardly believe Finn’s swift change of heart. “What had happened? How had he come to decide?”

I had met with many people who were considering treatment options they had been offered by their doctors. I often created spaces in which a person could discuss how they wanted to approach the end of their life. What was it that had me quite so unsure this time? Was it the rapid time over which this had all occurred? I thought about Finn saying to me, “I have hope for my life” as I had left his house only the week before. I knew I had held no preference as to what Finn should do, but what effect, if any, had our conversations had on his decision-making? I resolved to make sure Finn was doing what he truly wanted.

I almost ran downstairs to my office, checking my diary as I went. As I made my way through the hospice inpatient unit, I asked one of the nurses to enquire if Finn would like to see me. When I arrived in my office the answer was already waiting for me on the answerphone. Finn and Liam were keen to meet with me.

I knocked on the door to Finn’s room in the late morning. Finn was lying in bed in his pyjamas. His head peeped out of the bedclothes, the white of the sheets drawing my attention to his pallor.

“Hi, Finn.”

“You found me alright, then. Thought you might go to the house…” he rasped. Finn’s mouth turned up as he attempted a smile. He seemed to have forgotten that I had arranged this meeting with them only hours ago.

Liam’s eyes shone with tears as he explained, “We arrived yesterday morning. Dad’s been getting worse every day. He’s a bit confused at times. They say he’s only got a day or two maybe…”

Tentatively I asked, “Finn, do you have the energy to catch me up on events since we last met? Or would it be easier if Liam helped me out here? It seems like a lot has happened…”

Each word was an effort as Finn explained, “After I saw you, I went to dialysis and decided I’d had enough.”

My speaking seemed to slow to the pace of his. “How did you know you’d had enough?”

“It was just too difficult.” The gaps between each exchange lengthened as we responded to the limits of illness.

“May I ask what it was that became too difficult?”

“Living…when I decided to stop treatment it was like a great relief… as though a weight had been lifted off my shoulders…I was in pain all the time. I’m in the final stages…and I’d had enough. I wanted some peace.”

“What were you hoping for that some peace could give you?”

“For the last few months, I was always in pain, tired, and felt sick. I was falling over and I couldn’t breathe properly. I never got a day’s relief…” Finn paused gathering his breath. I remained silent, allowing him the time he needed to go on.

“The doctor told me it was harder to stop than to start dialysis…and I started to think about that. It’s easy to start because you think it’ll do you some good. And it does to start with. Then it gets harder and harder…to get some peace you have to feel worse first.” Finn began to cough. I waited quietly, conveying in my stillness and relaxation that I was in no hurry for him to resume the conversation. When Finn had settled, I picked up the thread again, “You’ve spoken to me of the struggle to decide. How did you move towards thinking that some peace might be more important to you than continuing on with your life?”

“I realised I couldn’t do what I wanted, I don’t have quality of life and I thought a lot about what I wanted…what was important to me…you asked me that…and I thought, ‘I want some peace.’” Finn shut his eyes underlining what he had said.

“You had some worries about this time and what it might be like. Are those worries still there, or have they changed in some way?”

“They’re different now, not so bad. The staff are helping me.” Finn looked out the door in the direction of the nurse's station. “I’ve been thinking about it for a long time, and I just thought, ‘this is enough’”

Finn tried to move up the bed but couldn’t. Indicating with his hands to Liam he didn’t want help, he settled for moving his body onto his side.

Liam answered as he watched Finn struggle but respected Finn’s request to be independent. “It was a shock. It took me a while but I understand. And it was a relief especially when we found out Dad could come into the hospice for care. Suddenly he was the person he used to be. Laughing and joking and poking fun. He was himself.”

Turning to Finn I asked, “Do you feel more yourself?”

Finn answered as if each word was weighted down by the effort it took to utter. “Yes. I was using all my energy in the fight…with the illness. It was a struggle every day. There was nothing left…Just to go to dialysis was so exhausting. It’s a relief… A total relief and now I want peace. I won’t go back to dialysis again…”

I turned to Liam to give Finn some respite from speaking. “Liam, what do you think your Dad is prioritising when he chooses peace?”

“Control over himself again. He wanted to take it back. He’s spent so long being sick, going to dialysis, taking so many pills, trying to sleep and dealing with the pain. It’s a relief for him now. And drugs have side effects. He’s more himself now.”

Finn added, “Yeah…it kind of enslaves you….” His eyes closed.

“Liam, you said that your Dad stopping dialysis was taking back control and being the person he is. Could you tell me about this person you understand your Dad to be?”

“Organised. He always liked to be in the driving seat. He is a bright, active man who always managed everything on his own. He got himself to treatment every week through all these years, did things on his own terms.”

Finn opened his eyes again and echoed, “Yeah, and I’m going out on my terms now.”

“Finn, you mentioned that ‘it kind of enslaves you,’ earlier. Could you help me to understand more of what you mean by that?”

Finn sighed. “My catheter leaked last night…everywhere. The nurses had to come and we did a big clean up. It’s not just the dialysis. It’s everything. All the problems, the treatment, the side effects. It’s all the time.”

“So much to deal with….” I murmured.

Finn responded with a long speech for someone so unwell. “I feel free now…A man came to the dialysis unit for his first treatment when I was having my dialysis the day after I saw you — what ended up being the last one. I watched him come in and I thought, ‘if it was me doing it again, I would never start.’ I was kind of shocked by myself thinking that, but I realised it’s true. I wanted to go over and tell him not to do it… but I didn’t of course. And then I thought, “What am I doing here?” and suddenly I knew I didn’t want to be. I thought it would feel like giving up, but it doesn’t…it feels right in here…” Finn moved his hand to his heart. “I am me again…and soon I will have some peace”.

As Finn spoke, I reflected that I might not ever fully understand what had allowed him to decide. I wondered if reconnecting him to a sense of his own worth or to some of his knowledge and abilities had had a role, but I would never know for sure. A slight smile emerged on Finn’s relaxed face. In that moment I could see what looked like the peace he had been describing.

I left the room after thanking Finn for sharing so much of himself and his life with me and teaching me about decision-making.

It wasn’t the last time I saw Finn though.

Two days later, I walked past Finn’s room knowing he was now close to death. Finn was alone, lying in his bed and I thought I could hear Liam’s voice in the hallway talking to a nurse. Finn invited me in with a look. Speech seemed beyond him. When I sat down by his bedside, Finn reached over to hold my hand. Willingly, I offered it to him, and he clutched it tightly. We remained silent, although I could feel what I thought of as companionship and warmth between us.

Finn lay sprawled on his back with his eyes closed. His breathing was moist, and I thought he was possibly close to death. After a time, I felt a slight pressure on my hand. “Is this it?” he whispered, seeking my confirmation he was dying.

Steadily, gently, and with all the kindness I could fold in, I slowly confirmed, “Yes…This is it.” He seemed to relax then, sinking back into his bed as if soothed. Though his hand still held mine, it had lost its tight grip.

* This article, with full references and the author’s notes, first appeared in the Journal of Contemporary Narrative Therapy, 2022, Release 2, 27-61, and is reprinted with permission of the author.  

Narrative Therapy in a Cross-Cultural Conversation with Someone Approaching Death

Acknowledgements

T?na koutou, t?na koutou, t?na koutou k?toa

Ko Ben Lomond t?ku maunga

Ko Loch Lomond t?ku moana

Ko McAllum t?ku iwi

No Kotorana ?ku t?puna, engari I haere mai ?ku t?puna ki Aotearoa nei

No reira ka mihi hoki au ki te iwi M?ori

Ko James Copeland t?ku t?puna

Ko Hamish McAllum t?ku p?pa

Ko Jan Hutchison t?ku m?ma

Ko Gavin Pilkington t?ku tane purotu

E rua ?ku tamariki ko Tim r?ua ko Ella

Ko Sasha McAllum Pilkington t?ku ingoa

No reira t?na koutou, t?na koutou

Kia ora t?tou k?toa

Thank you, Huia Swann, for your encouragement and feedback through the many iterations of this story.  

An Unexpected Beginning (1)

It was a busy morning at the hospice. I made my way into the community team’s office and was greeted with a buzz of activity. One of the nurses called me and I turned to greet her. In her hand was a referral letter.  

“Sasha, I was wondering if you would see this woman for counselling? Her name is Louise, and she has advanced lung cancer. (2) Louise is refusing all treatment. It seems someone thought she was ‘in denial’ but I saw Louise yesterday and she told me she’s ‘not having any chemo’ because she doesn’t think she’s worth it. Louise is M?ori, but she’s refused cultural support. Could you see her?” she repeated, as she handed me the letter (3).

“Of course,” I replied, disturbed by the thought that Louise didn’t feel she was worth treatment, but grateful the nurse had looked beyond the judgement that Louise was “in denial.” Before I could say any more, the nurse was summoned to the phone and with a smile, I left to call Louise.

A few days later I pulled up in a beautiful driveway. Plants nourished by an attentive hand surrounded the house in front of me. As I got out of the car, I saw a slight woman emerge into the sunlight. Her dark hair gleamed as the rays of sun caught it and, as I came closer, I saw she was smiling. Louise welcomed me warmly and, after I had removed my shoes, guided me into the house. We sat down at the kitchen table. Nearby stood a large kete (4) filled with driftwood, each piece carefully placed to reveal a story. Woven mats hung on the walls and outside I could see clusters of red berries hanging below the fronds of a nikau palm. Artistry was evident in creating this home and I looked around with admiration.

After some further introductions, Louise eased herself back in her chair and looked at me expectantly. Tentatively I responded to her silent invitation with, “People are so much more than the illness they are living with and their current situation. Would it be OK to begin, maybe, with me asking you a bit about yourself…so that I might learn a little about who and what matters to you?” (5) I didn’t name the illness as I didn’t know what language she preferred to use or how she might wish to speak about her experience.

Louise responded immediately. “Sure! I’m married to Pete and we have three children. They’re all really supportive, in and out of the house every day…”

Louise continued to share stories of her day-to-day life and I listened attentively, occasionally asking her questions so that I could learn more of what was important to her. I quickly learnt Louise was a hard worker and a committed parent. She made no mention of where she was from or her t?puna (6).

After a time, Louise paused and reached across the table to pick up a piece of paper. “Well, it’s lucky you’ve come to see me on your own.

I don’t like groups because I lie in them. I’m a liar,” she stated in a forthright tone, waving what I now realised was a support-group invitation from the hospice.

Struck by her honesty and trust in me, a stranger, I replied, “Would it be OK to ask what you mean when you say you lie?” (7) In my mind was an awareness that some truths are more easily spoken than others, and for some people it was unsafe to voice or live their truth.

Louise responded, speaking in rapid buoyant tones, “Oh, I say what I think I should in groups…but then later I discover it would have been all right if I’d said what I really thought.”

With all the respect I could convey, I replied, “What is your understanding of why you say what you think you should?”

Immediately Louise explained, “Oh, I tell a story to fit in.”

I reflected that people usually have good reasons for what they do. “What is important to you about fitting in, do you think?”

Louise sat back in her chair looking thoughtful. “I like to fit in. When I’m in a community I’m proud of it. I like belonging to clubs. I wasn’t brought up to do any sport or anything, so it means I can choose. I’m not tied to one thing.”

Curious, I responded, “Would you mind me asking… how do you go about this fitting in?”

Louise paused. “I don’t know, but I’m really good at it,” she finally said.

“Are you a flexible kind of a person?” I offered.

“Sure am.” Louise nodded.

“Which kinds of communities or clubs do you like to fit in with?” I continued.

“I take the best of what’s around. People are good to me, kind,” Louise answered, as if she couldn’t quite believe her good fortune.

“Would you say you are someone who both accepts and appreciates the generosity and care of others?” I asked, noticing her gratitude. (8)

Louise began to tell me how she appreciated homemade gifts as opposed to bought ones. She elaborated on the care and effort in the presents people made and gave to her. Homemade fudge was so much better than a box of chocolates, she explained.

“Do you see the intention behind the gift, the love maybe?” I asked. Louise nodded as if this was obvious to her.

“What do you give to people in return when you accept their gifts, noticing the care and effort that has gone into making them?” I asked, highlighting the reciprocity in the way she received gifts. (9)

“They must feel the magic, because I do,” Louise answered matter-of-factly. “People are kind,” she reiterated. “I have lung cancer. It’s an ugly cancer. I was so happy when they included me in the make-up day for women with cancer. I didn’t think they would, what with me having a dirty cancer and them all having the pretty pink kind.”

Taken aback, I responded, “Would it be OK to ask what you mean when you talk about your cancer as being dirty and theirs as a pretty pink kind?”

Louise lowered her head as she answered me. “My cancer is dirty because it’s a smoker’s cancer. It’s my own fault.”

Infusing as much respect into my voice as I could, I asked her in a quieter tone, “Would you mind me asking you some questions about how you began to smoke?” I reflected on how hard it would be to be a smoker with cancer and not afforded the support that other people living with cancer are offered. I tried to imagine being shamed at one of the worst moments in life, not allowed to feel sad or angry but being repeatedly blamed both vocally and silently.

“It was the ‘in thing’ to smoke,” Louise explained. I nodded. Louise and I both came from a time when many people smoked.

“When I was 10, 11, 12 years old, I pinched my mother’s cigarettes for a naughty puff,” she told me with a mischievous glint in her eye, evoking glimpses of childhood fun away from the surveillance of adult eyes.

“When you were 10, 11, 12 years old, do you think it was possible for you to realise the full implications of the naughty puffs?” I inquired, hoping to lessen the harsh judgement she extended towards herself alone.

“No. I didn’t realise in my teens either. It wasn’t ‘till much later when I came to live around people who didn’t smoke,” she told me.

“How do 10-, 11-, 12-year-olds come to smoke, do you think? How do they come to think it’s a good thing?” I responded.

“It’s the way I was brought up. It was a hard life. It wasn’t ‘till I started playing sport that I realised there were different ways of living, that some kids had a bed each and enough to eat. (10) My parents were hard people. They smoked and drank,” Louise conveyed with a frown.

In my head I did a few calculations. Louise would have been growing up after the Second World War when many M?ori were living in poverty. I thought about her family and wondered if Louise had a grandfather who fought in World War One. I knew of P?keh? returning servicemen who had been allocated a farm in the ballot after fighting in World War One, while my friend’s t?puna (11) who fought in the M?ori Battalion returned to discover his ancestral lands had been confiscated. There were many possible reasons for why Louise’s family experienced hardship.

“What is your understanding of how they came to be like that?” I asked.

“Maybe it’s ’cos they grew up in the Depression. (12) It was a hard life, and they worked hard and partied hard. Yeah, they were hard people,” she repeated.

“Hard lives can have people turning to cigarettes and drink to ease things, especially when there is trauma and hurt that comes with it,” I commented. “What do you make of there being cigarettes for sale when we all know they kill people?”

We pursued this line of questioning for a bit longer, with me seeking to broaden the responsibility for smoking into our societal context so that Louise wasn’t left to shoulder it entirely on her own.

However, I noticed myself beginning to labour a little in the conversation and started to wonder if I might be more interested in taking such a direction than Louise was.

So, I listened harder for what was important to her.

“Yeah, well…” Louise pondered. “I left home at 13 to get away from it all. I knew I had to get out. The beatings, the life… My fault I smoked… Miracle I survived this far. The shame of it has been with me since I’ve had children.”

“What was important to you that you knew you had to get out?” I wondered.

“I wanted to get away from the cigarettes and the booze…” Louise elaborated.

“Do you know what it was that was important to you that you wanted more from life, that you didn’t just accept the cigarettes and booze?”

“I wanted a better life and to live it,” Louise explained.

“May I ask, what sort of better life did you want?” (13)

Louise told me how she wanted a home and security. “I wanted a bed of my own and to know where I was sleeping each night,” she explained.

“What steps did you take towards getting a better life?” I inquired.

“I went white.”

The words hung in the air, heightening my awareness that I, a privileged P?keh?, sat at her table. I wondered how I was selling her short.

Louise continued, “I knew I had to leave if I was to survive, so I hung around with my white friends. When I left, I got away from a lot. Not just the cigarettes. I made sure I fitted in, and it was my ticket out.”

“Would you say fitting in saved your life?” I asked her.

“Definitely, I had to get away from the other lot.”

She watched me, seeming to wait to see how I would respond. I reflected on Louise calling her own people “the other lot.” I could hear the racist discourse ringing in my ears, inviting the harshness to be because they were M?ori, rather than taking into account the devastating effects of colonisation on generations of M?ori people.

“Could you help me understand a little more of what you mean when you say ‘the other lot?’” I inquired. (14)

“M?ori,” she replied, sounding like she was repeating something rather than truly believing it.

Louise waited, her body tense and alert.

“Colonisation has been very hard on the M?ori people,” I ventured, thinking of the decades of injustices M?ori had endured. “Do you think that the drinking and smoking and what you went through was because they were M?ori, or do you think it could have been because of the hardness of life and what it did to the family?” (15)

Louise’s shoulders dropped and she was quiet for a moment. “I’ve forgotten who I am,” she rasped sadly. (16)

Before I could respond, she ploughed on, seeming to contradict herself with what could have been growing pride in her voice. “I do all the old stuff: knitting, cooking, sewing, carpet-making. I paint.”

“Are you a creative person?” I asked her, smiling. “And the garden?”

Louise enthused about her garden.

“Are there threads of who you are in the old arts?” I asked her.

Louise considered. “Yes, I think there are.” She seemed to meditate on this for a moment, then looked me in the eye. The corners of her mouth crinkled up as a smile formed briefly. “But then I forget,” she added, looking shamefaced again.  

“Colonisation can do that to people…get in the way of being connected to who you are… Not surprising when there were laws trying to do just that,” I said sadly. (17) I reflected on the children who had been beaten in school because of laws that forbade them to speak Te Reo M?ori and the efforts to suppress M?ori cultural practices. “There can be a heavy cost when you are forced to turn ‘white’ to survive. Would it be OK to ask if there has been a cost for you?” (18) I thought about what it might be like to forget who I was. Emotion stirred in my belly.

“I don’t have a belonging,” Louise confided. “I feel I’m a betrayer.”

Deep sadness leaked into the air around us. It hovered, seeming to draw us together. We sat in silence.

After a time, Louise gradually seemed to recover, and in a bright voice she said, “You know I’m Scottish. I identify as Scottish.” I looked into her beautiful brown face, with its broad nose and dark brown eyes, framed by the sweep of almost-black hair.

I responded then, not as I would to a P?keh? with a question, but in the way of M?ori who connect through the people and the land they come from, whanaungatanga (19). I adjusted my phrasing according to shades of tikanga M?ori (20) and said, “The people I come from are Scottish. They belong to the clan of Callum. They come from the highlands of Scotland.” My intention was to tell her we were connected, and in telling her this and in the way I phrased it, I wanted to say, “I also acknowledge your M?ori side and it is beautiful,” though this was implicit.

My disclosure resonated with Louise immediately. Laughing, she jumped out of her chair and rushed off to gather photos of all her grandparents who had died long ago. She introduced me to her Scottish grandmother, whom she loved dearly. “She taught me the old arts,” Louise explained.

“Were you a willing learner?” I asked her.

“Yes, I took in what I wanted and spat out what I didn’t.”

“May I ask what you value about your M?ori side?” I inquired, appreciating that the photos were of both sides of her family.

“M?ori love fully and unconditionally, no questions asked, no grudges.”

“How do you love?” (21) I asked, hoping to make visible a thread of whakapapa. (22)

Louise proudly announced, “I love like a M?ori!”

Warmly, I responded, “Can you tell me some stories of how you show that knowledge of loving?” I wanted to strengthen Louise’s description of herself as having the ability to love fully. It stood out in contrast to her sense of not being worth chemotherapy.

Louise was off, taking centre stage. I listened, grinning, delighted by her rich and lengthy stories of such loving. I then asked her questions of how she came to learn such loving and we tracked knowledge of love through the generations in some long-overlooked stories.

“Who in your life knows that you have this knowledge and way of expressing yourself?” I asked.

“All my friends!” Louise responded enthusiastically.

“Could it be that you have captured aspects you value from both worlds with your fitting-in ability?” I asked, after a moment’s reflection. Louise embraced this possibility seemingly for the first time. Her enthusiasm bubbled. We went over her mothering and loving of her children, with Louise adding details such as “…but the car is warranted.”

“Could it be you are not a betrayer if you’ve made the best of both your M?ori and P?keh? sides?” I slipped in the word P?keh?, the M?ori word for non-M?ori, to give weight to M?ori knowledge. “You’re right, I’m not,” she told me. Then, as she thought about it, her voice firmed. “No. I have been clever; I haven’t got off-side with anyone. I have danced on both sides of the fence.” Louise smiled fully at me. It was a beautiful sight.

Smiling back, I continued, “If you were to think of yourself as a person who can dance on both sides of the fence, what difference might that make to how you are living your life?”

“Well, just everything,” she exclaimed exuberantly. Idea after idea quickly followed.

“If this ability you have to dance in two worlds was one that you kept in your mind, what might it keep you in touch with that is important to you?”

“That I’m OK. Sasha, it’s going to change my life!” Louise’s joy once again spilled over. I was overwhelmed. How generous she is, I thought.

“Do you think it will make a difference to how you live with cancer?” I asked.

A little later, I started to draw the conversation to an end, mindful that we still had more to talk about.

“Sasha, I like this talking,” Louise exclaimed, with bouncing joy. “Today I discovered I’m not a liar!” (23)

I drove back to the hospice with sadness stuck to me rather than her happiness. All I could think of was Louise…a M?ori in a sea of P?keh?. I thought of the times when I have felt apart, out of step, disconnected and the only one. I tried to take myself there, but I knew it was not the same. When I arrived back at the hospice, I wondered what I might have missed, what I didn’t ask. Later, as I reflected with Niwa, my M?ori colleague and friend, I was reminded of the bridges that friendship, love, and respect can provide.

A few days later, I heard from the nurses that Louise had decided to have treatment for her cancer. Louise later explained to me, “I felt worth it after we talked.”

When Niwa and I met with Louise and her family a few weeks later, we heard the good news she was improving. A short time of respite from the cancer beckoned.

Postscript

This story illustrates one way a counsellor might go about such a conversation. It is not the only way to respond. I carry the knowledge that I have many blind spots, especially in conversations that are cross-cultural. I am also aware that I am the recipient of the kindness and generosity of the people with whom I meet. This story does not represent a “right way” to practice but rather is written in response to a question I ask myself: “What does my commitment to the principles of Te Tiriti O Waitangi (24) look like in practice?”   

Notes

(1) For those readers interested in the use of stories to learn or teach narrative therapy see Carlson et al (2018) and Heath et al (2022). For additional examples of stories illustrating narrative therapy see Epston, 1989; Heath, 2015; Ingamells, 2014, Ingamells & Epston, 2016; Pilkington, 2014; 2016; 2021; 2022.

(2) This story was written with the permission of the person in it. All identifying information has been changed.

(3) In Aotearoa New Zealand, M?ori have a higher incidence of lung cancer and poorer survival rates than P?keh? (non-M?ori. A number of barriers to early diagnosis and treatment have been identified including access to care, engagement with specialists, communication with specialist services, and lack of culturally appropriate services (Kidd et al, 2021). Even though Louise’s lung cancer was incurable, chemotherapy would offer her the chance of improved quality of life and an extended life span.

When someone responds in ways that others don’t understand, it is common for judgements to be made from a position of “knowing best” what is right for that person. I find it more helpful to be curious about another person’s world and to try and understand what is important to them. I also want to learn what they are taking into consideration that matters to them and is restraining them from taking a particular course of action. For example, what was Louise concerned about or prioritising that she had chosen not to accept chemotherapy? Often, when I have fully inquired into what matters to a person and what they are weighing up, their decision-making process and reasons becomes clear. At other times, the questions I ask can lead them to reconsider their decision and take another path. (See Chochinov, 2022)

(4) A kete is a basket usually woven from flax. M?ori words are in common usage in Aotearoa New Zealand. I have chosen to leave such words in this text out of respect for the person in the story, and to uphold the mana of Te Reo M?ori (the M?ori language).

(5) My intention in asking this question is twofold. I wanted to get to know Louise aside from the difficulties she was living with in ways that dignified her and brought forward her preferred stories of who she was. I also wanted to create space for culturally respectful ways of getting to know each other without assuming how she might wish to go about that. A broad question such as this one creates space for Louise to answer in ways that fit for her. In some instances, I may ask a person if there is a particular way they wish to begin, in order to create space for karakia (a ritual chant or prayer) or any other ritual that may be meaningful to them. Louise’s talk and refusal of cultural support led me to think such an invitation might be uncomfortable for her. I therefore held back on this occasion knowing I could raise it another time.

Building a relationship in ways that honour and create space for possible cultural identities a person may hold is important, especially if that culture has been oppressed. Such respect has effects on what kinds of conversations are made possible and can open areas that are often overlooked. For example, acknowledgement of tikanga M?ori (M?ori cultural processes) can underpin the engagement of M?ori in treatment (Kidd et al, 2021) and can be significant in generating a relationship in which stories of suffering can be told.

It was unusual for me to have this first meeting with Louise on her own. (It was Louise’s decision to do so.) I usually meet with many different constellations of families and most often see someone who is unwell with at least one other member of their family/wh?nau. Louise introduced me to her family after this conversation and later brought different members of her wider wh?nau/family in to see me when they visited from other parts of the country.

(6) The people Louise was descended from. For some M?ori, this is an important part of forming a connection and getting to know each other.

(7) This was a significant deconstructive question in our conversation. Deconstructive questions pull apart the threads of an idea so that a person can examine them. When we take up a stance of curiosity and ask a person about the particular meaning of common words and ideas to them, new therapeutic directions can open up.

(8) As I learn more about Louise’s life, I am listening for how she goes about what is important to her and whether that way of living expresses Aristotelian “virtues” that she values, such as for example; generosity, compassion, kindness, courage and love. I gather more stories of these expressions of goodness that are valued by Louise and these stories make up the backbone of the re-authoring process (White, 2007). I am mindful that ideas of what is important and considered virtuous sit inside cultural frameworks. Such themes of what people are engaged with in their life, and the virtuous ways they go about what engages them, are called “narrative values” by the philosopher Todd May (p. 73, 2015). May says it is these stories that can give a person a sense of living meaningfully. Such identity stories that describe valued qualities of a person are very helpful at the end of life. Not only do they lend meaning to a person’s life, but they offer a way of responding to illness, treatment and dying that is not reliant on a well body. They can give a person a sense of agency at a time when they may be experiencing a lack of influence over their life (see also Pilkington, 2022).

(9) Ideas that position a person who is unwell as “only receiving” can lead them to feel a burden on others. I often inquire in detail into how a person receives the care of others and the experience they generate in the carer with the intention of highlighting the reciprocity in the relationship. The way we receive can give another person an experience of themselves as generous, kind, significant, and worthy for example.

(10) Moana Jackson vividly describes the processes of how colonisation robbed M?ori of a sense of home in their own land and what was lost. “When you take away the whenua from a people who regard themselves as tangata whenua; when you take away their ability literally to touch the mountains; if you limit their ability to dream their own dreams; if you take away the earth upon which they stood with love; then you render them homeless in the most complete sense (Jackson, 2022, para 25).” (Whenua means land and tangata whenua means people of the land.)

(11) T?puna means ancestor in the M?ori language.

(12) During the depression M?ori were harder hit than P?keh?. M?ori were often the first to lose work and were paid lower unemployment benefits than P?keh?. The situation with benefits was only rectified in 1936 (Waitangi Tribunal, 2004, p. 659).

(13) I cannot assume I know what “a better life” means to another person.

(14) My intention in asking this question was to make the racist discourse visible so that we could examine it together.

(15) Note the way I scaffold my question with a statement. Louise immediately recognised how I was positioning myself and responded. Consider the harmful impact if I had let the moment pass without addressing such an idea and one that included Louise in its judgements. We could ask, what was made possible in the conversation following these moments when I sided with her and her wh?nau against racist discourses?

(16) This is an example of how meaning can be lost in translation (Mutu, 2004). When Louise referred to who she was, she was not speaking of an individual internal construct of self but a relational self. Included in who she understood herself to be were her connections to her t?puna, her wh?nau, the whenua (land), and moana (sea). In this conversation, Louise is considering the elements of whanaungatanga that she wishes to be connected to and that have been disrupted by colonisation. I, in turn, am referring to a relational self when I reflect on what has gotten in the way of her connecting to who she is. When I asked my colleague Barbara O’Loughlin of Marut??hu and Ng?ti Hau?, to describe her understanding of who she was, she answered me, “I whakapapa to the maunga (mountains), to the moana (sea), the awa (river), to my t?puna, to my whanau and to te ao M?ori (the M?oriworld), (personal communication, November 24th, 2022)”. There is no “I” or “self” t

Katja-Writing: Being Author and Audience to Fictionalized Stories of Trauma- Part II

Irene wrote this story in August 2017, based on a recurring nightmare. Parenthesized comments are Christoffer’s responses.

Freedom — A Dream Story by Irene

Kate got up early that morning. She could not sleep. This night had been particularly ugly, and Kate had not dared to fall asleep after dad had gone.

(I am at a loss for words to connect to this. Even though it calls for something to be said. Somehow these words are powerful, even though it is short and describes so little.)

Kate lay there for a long time, observing her sister’s alarm clock that she had forgotten to set yesterday evening. It did not matter that much, for Kate would make sure that sister got up on time. Although the sound of sister snoring was calming, Kate also had a particular unrest and tension in her body. She lay scolding herself in her head: “Kate, get up now! Sister is safe now. You can go back to your own bed!”

(Dearest Kate. You protected your sister in this ugly night. That is what you were doing. Your love is so great that I have difficulty imagining it. And the injustice is so great.)

Although she could hardly stand to leave her sister, Kate forced herself out of the bed. She knew the danger was past and that they should be getting to school soon.

(It seems to have two meanings, this word [In Danish, the words “the danger” and “the father” are spelled exactly the same.])

Kate picked sister up from the floor and tucked her in bed.

(This is beautiful. It glows in the darkness.)

Then she set the alarm clock to ring in half an hour.

(No sleep for Kate. She must be exhausted.)

Kate walked through the dark attic and down the big staircase. She took out oatmeal and two plates. Just as she had just about set the table for sister and herself, dad came in the door.

(Stay away!)

Dad smiled with a look in his eye and said, “Good morning. Did you sleep well?”

(Are you insane?! What the **** kind of question is that?! Are you absolutely insane?)

Although Kate had not slept, she said that she had indeed. It was a good morning, for Kate knew that sister had slept all through the night.

(Your heart always belongs to your sister. I wish someone’s heart was yours in the same way. You too should be safe so that you could sleep all through the night in safety)

That was good. Dad asked if she wanted a “super-sandwich” or “sloppy-sandwich.”

(Does he not get anything? It is like he does not have any awareness that he has given his daughter “a particularly ugly night,” which I am sure is the world’s biggest understatement!)

Kate wanted a super-sandwich. She knew that the sandwich only consisted of a slice of rye bread and a slice of white bread put together with liver pâté between them. Dad believed that if the rye bread was on top when you ate it, it was a super-sandwich, while white bread on top was a sloppy-sandwich, while in the eyes of the children it was reversed. Dad and Kate used to laugh about it in the morning, but on this morning, she did not think it was very funny. The sandwich had no superpowers, no matter how she turned it. She did not feel very strong.

(Kate, you must be absolutely exhausted. And violated and degraded.)

Sister came bumping down the stairs. Kate had taught her to sit on her bum and take one step at a time.

(I bet you have taught her a thousand good things, Kate.)

Sister smiled and had slept well.

(Because Kate protects her and makes her safe. Is there a better gift to give to a child than that?)

Dad teased her by putting half a “super-sandwich” (rye bread on top) on her plate. Sister made a sound of joy and seemed as surprised about it as she did every single morning.

(This tells me that Kate succeeds in protecting her sister. Because sister seems like she feels safe.)

Sister’s happy laugh always got Kate in a better mood. They ate their bread with some oatmeal that they knew was not mouldy like the bread often was.

(I never feed my children mouldy food. Why do they have to eat mouldy food? Does Kate’s mom and dad not care? Do they eat mouldy food themselves too?)

Kate took sister along to the school bus. It was Wednesday so Kate did not have to look after her sister so much during the ride. The big kids were not riding along on Wednesdays. While sister was being silly with the boy from next door, who got on just down the road, Kate sat looking out the window. She liked to look at how the road, the trees, houses, and people disappeared.

(Is that because it feels like escaping?)

That made her calm. The further away from home that they got, the worse Kate felt. She knew it was not because she would rather stay at home, but it was like her body began to wake up.

(Does this say something about what Kate does to survive? Does it reveal how she prevents her body from being awake so that she does not feel what it is subjected to? Is that necessary to survive? Her body ought to be honoured as the way in which she is present here in the world. That body is sacred and should be protected and caressed. True caressing that stems from caring and loving from people you love and with whom you feel safe and are safe.)

It began to hum and hurt, and she felt nauseous. Sister and the boy were playing energetically with their bags, and one bag hit Kate on the face by accident. Kate scolded and told them to sit and be nice. When Kate turned to the window again, she felt how the pain increased on her cheek. It was nice. Her cheek went all warm, and everything else disappeared.

(Is this also a way to escape? A way to slip away? A way in which Kate protects and upholds herself?)

It was as if Kate’s brain no longer focussed on the nausea, but only on Kate’s cheek. It was a nice feeling, because strangely it somehow made her clean. It was as if it sucked up (like a vacuum cleaner) all the bad so that it only existed on the cheek.

(I think I understand what it says here, but I am not sure I properly understand what this is and why it works this way.)

Kate knew what she had to do!

The bus arrived, and Kate hurried sister along. Sister did not understand why they were in such a rush this morning.

(It is because you have something you need to do, is it not, Kate?)

The bus always arrived 10 minutes before the call to attend class. Sister was being difficult and did not want to come along, and so Kate spoke to her in an excited tone of voice:

“Look!” Kate pointed into the empty air in the direction of sister’s classroom and said, “Do you see the giant ice palace?! It’s made of ice cream!!” Sister looked around with big eyes but did not see anything.

(You are amazing at this, Kate. I think you really understand a lot about how your sister thinks and what is fun for her. And I think it is a significant accomplishment to be so imaginative and convincing while there is at the same time a seriousness in this situation. I bet there is a history of how Kate and her sister found this imaginativeness together. Kate, I know this is something you do to lure your sister along and get her to do what you need her to do. One might say that you manipulate her a bit. I know that. But I do not think it is evil. I am impressed at your skill in making life a little easier for your little sister, and that is loving.)

That did not matter, though, because Kate’s voice assured her that if you imagined something strongly enough, there was a real possibility that it could become real. And who would want to miss an ice cream palace?!

“I’ll get there first!” Kate yelled, picking up sister’s backpack and started running.

“Wait for me!” sister yelled and dashed after her. When they arrived, Kate took out some paper from her backpack, folded it and gave it to sister.

“You mustn’t eat it all at once. It’ll give you tummy ache.” Sister skipped over to the boy from next door in excitement and showed him the “ice cream”. They immediately started playing with it, while Kate put sister’s backpack in its place.

(Sister is having fun. You are giving something good to your sister’s life, Kate. That is true, even though I know that it also has a different purpose. But that does not make what you give to your sister any less real.)

After Kate had said goodbye to sister, she ran to the restrooms in the building for the middle age group. It was right next to Kate’s classroom, so she had time if she was quick. Kate locked herself in the toilet and put down her backpack and pulled out a small razor. She had stolen it from dad’s toiletries once. Kate knew stealing was wrong, but she was going to give it back – someday.

(He he. I bet that when Kate grows up you will still be able to recognize her by things like this here. This particular way of phrasing it. I like it. There is life and self-determination in it.)

Kate got everything ready like she had done so many times before — rolled up her sleeves, unrolled most of a roll of toilet paper to form a little blanket that she placed in her lap and got ready with the razor. It was important that no blood got on her clothes, because then the grownups would get angry at her — or the other children would see confirmation that she was weird. Kate stretched out her arm, pressed the razor into the skin and pulled. What a relief. She was liberated!

(Does that not hurt? In biology class we once had to cut ourselves in the finger to measure our own blood sugar. I couldn’t do it. The thought of it made me nauseous and I refused. Not because I can’t stand the sight of blood. I am fine with that. But cutting myself deliberately. I can’t. Here is something that is different from what I am familiar with. What is this? Kate, you call it liberation? When you cut yourself, is it like cutting a rope that had you tied? Or is it because it is like something being able to come out of the body?)

The first cut opened her and let out her ugly thoughts and feelings.

(So it lets something out. Something that was trapped inside?)

The next cut wiped away her personality.

(Is it a particular version of you that is wiped away, Kate? Something you precisely do not want to be?)

The third cut gave her a feeling of strength and courage.

(Does something else step in when ugly thoughts are let out and personality wiped away? I wonder where that strength and courage comes from?)

And the last many cuts made her invincible.

(Wow! This is powerful stuff. Is this a big contrast for you, Kate? Compared to what you are otherwise made into by humiliation and violation?)

She always tried to cut around the bruises on her skin, but that was not possible this time. Kate had been very bad all summer, so dad had had to punish her.

(Did your father himself teach you that this is something he has to do, Kate? He does not have to do anything. It is a choice. And what must a little girl do, I wonder, to deserve so much “punishment” that she is covered in bruises? I cannot think of anything to justify it. And by the way, it is illegal. And Kate’s dad, will you stop making your daughter believe that you have to beat her up because she has been bad? Would you like to know who I think is bad? Kate’s dad: Keep your hands off your daughter. She is a most beautiful human being and you do not even grasp it. You treat her as if she were a thing that exists only for you.)

The bruises covered almost all her body. But it didn’t really matter. She could not feel the bruises at all when she cut in herself. Kate always did it quick, so it did not hurt. The pain began to make itself felt after a little while. It warmed, removed the nausea, cleansed the filthy body and made her alive.

(It cleanses? And makes alive? How does this transformation work? And perhaps more importantly: Where does it take you, Kate? I am fascinated with this Kate that appears when the body has been cleansed and a personality has been wiped away. This strong, courageous, invincible, alive person. Do you know where that comes from? What are you capable of when you have become that person? Would you like to always be that person?)

For a moment, she rested her head against the wall. Her arm fell into her lap. She went all limp. It was as if all bad that had ever happened to her disappeared. Like a wet sponge erasing all traces of chalk on a dirty blackboard. Kate had become clean. She made a new cut every time the blood coagulated. It was beautiful to behold how the blood first streamed down over her arm and coagulated in big lumps. Observing how the blood coagulated, she knew that she was normal. Her blood coagulated as it should. No one could prevent it from coagulating. She knew that in this, she did not differ from other people.

(Does the blood make you part of humanity? I am sorry that your skin must be cut and that you must bleed to know that. But I am also glad that it is possible for you to know that, even as I wish you had a different road to that knowledge.)

It told her that she was more than a kind of object only to be taken out for the pleasure of others.

(I think we see the same in how your parents treat you, Kate: They treat you as a thing that exists for their sake. You are truly more than that. You are a living human being. I believe that when you treat a human being as a thing, then you are practicing a form of evil.)

She was a human whose blood coagulated as it should. Kate also knew that NO ONE had touched her blood and thereby spoiled it. It was all clean and now it covered her filthy body.

(Kate, does this tell you that some of you is out of reach of others? That there is something in you that is clean regardless of all the filth they throw on you? I am sorry that it takes blood to know that, but I am so happy that it is possible for you to know. I imagine that the knowledge that there is something that nobody has touched and that is clean and proof that you are a real human being – I imagine that that knowledge is quite significant for you! Has that knowledge contributed to Kate’s survival?)

While Kate sat there on the floor, her eyes closed and enjoying being in a sort of parallel reality that protected her from the evil world she otherwise inhabited, it suddenly called in for class. Kate returned to reality. Now she was busy.

She panicked while she wrapped her arm with the remaining toilet paper. Kate only now realized she had cut herself much deeper than she usually did. The blood under her arm had not yet coagulated, as it should! Kate wrapped more paper around it, but it kept seeping through. If she put more paper around the arm, the thickness of it would give her away. That must not happen! Kate had to think fast while she pulled her sleeves in place. She concluded that luckily it was only the lower arm and therefore easier to hide it, as long as she took care to turn it away from others. She flushed the bloody paper in the toilet and made sure there was no blood on the floor or anywhere else.

When Kate tried to get on her legs, it was as if she should faint. She had not felt that way before.

(Has she bled too much? Is it so serious that she has suffered significant blood loss?)

Kate thought it was probably because she had been running with her sister and hoped that sister was okay.

(It is always your sister that you have in mind, Kate. I wish someone had you in mind as much as that.)

Kate struggled to her legs and supported herself into class. The others were running around and were too engaged in their own activities to notice that Kate was not feeling well. She sat down on the chair, even though she knew the teacher had not given permission for that yet. Kate probably got on her feet as she ought to when the teacher came in, but she was too unwell to remember if she had.

(Kate is usually quite sharp, even in extreme conditions. And it is not usually like this? So, it is not because she is still in a rapture or in another world?)

It was not until she saw the teacher explaining a lot of things to the class up by the blackboard that Kate registered that class had begun. Kate could feel the vessels in her arm pumping blood into her body. It was almost as if she could see the arm rising every time her heart made a beat. Kate could not focus on what the teacher was saying at all. It was as if the teacher’s mouth was just moving without any words coming out. The teacher moved from side to side; and Kate felt almost car sick from watching her.

(This sounds bad, Kate, are you alright? You don’t sound at all alright!)

Kate saw how the other children opened their math books and started solving problems. She tried to do the same but got so dizzy when she bowed her head that she was close to falling off her chair.

(!)

Kate tried to focus on the math problems, but her eyes kept wanting to close, and the fingers could not manage to lift the heavy pencil. The teacher came over to her table, while she supported her head with her arm. Astrid, that was her name, sat down and asked her in a friendly voice:

“Do you need help?” When Kate did not answer, Astrid asked, “Let me see. Which problem are you at?” Kate would usually turn the numbers the wrong way, hoping to be sent over to the special education teacher. It was nice to get away from class and get help from the special education teacher.

(Does that feel more like caring than most other things that happen to you, Kate?)

Kate liked Astrid, but Astrid always paid so much attention to her.

(This is a form of caring from Astrid.)

She did not like that. It was hard to hide anything from Astrid.

(A dangerous care? Is it because this attention could unravel the masks and the acting? And then what? Would the consequences be overwhelming for Kate, even though she would like someone to be nice to her? It must be a terrible dilemma; Having to participate in maintaining one’s own prison and cover for one’s own executioner while a kind person is standing right there and wants something good for you. How do you survive that? Because you know nothing else?)

Kate always succeeded to do so, but it was difficult. Perhaps because secretly, Kate wanted to tell Astrid everything, but she could not do that. The special education teacher was very pedagogical and would end up doing the problems for you if you pretended to be really bad at it. That was nice, because then you did not have to think. It was not like that on this day, though. Kate had not written anything wrong, so she could not be sent to the special education teacher. She had not written anything right either.

(She has not written anything because she can barely stay conscious. There is something really wrong, Kate!)

Astrid moved closer to Kate and put her hand on Kate’s arm. Kate was startled and pulled in her arm in a sudden movement. She did not really intend to respond like that. It was not like it hurt or anything, but Kate was just startled that someone was suddenly nice to her.

(I suspect your body is used to responding to violence. That is its first response. Is that right?)

People around Kate usually never touched her. Perhaps they thought that it was best for Kate when you did not show her kindness or attention.

(Oh no. What may that give Kate reason to conclude? Does that not fit in all too well with the idea of being filthy and wrong and not a real human being?)

At least then she would not tell any crazy stories. Maybe they were right?! Kate sort of woke up a little when she caught sight of Astrid’s hand. Astrid had gotten blood on her fingers but did not seem to have noticed it yet.

“You look pale. Are you alright, Kate?” asked Astrid, now in a worried voice. Kate replied that she was just a little tired, but then it happened! Astrid discovered that there was a fresh drop of blood on Kate’s sleeve. It was just a little blood off of Astrid’s finger. Fortunately, she had not seen how much Kate had bled through her jumper.

(!!)

Astrid again put her hand on Kate’s arm and asked if she was okay? While Astrid repeated the question in different versions, the shame grew within Kate; “Why are you so STUPID to bleed through?! You do not deserve Astrid being this nice to you at all!”

(Dear Kate. I want to tell you that you are never stupid. And you are not at all in control of what your body is doing here. Your body has suffered injury and it cannot close the injury. Someone being nice to you is exactly what you deserve. That is precisely what you deserve, for you are a beautiful and good human being, doing all that you can to solve all problems under completely awful, hellish conditions.)

Astrid pulled up a chair next to Kate. This time she must have noticed the blood because she twisted Kate’s arm around forcefully so that she could see the lower arm. Kate knew that the forbidden thing happened and that she should resist, but she just did not have the energy.

(!!! She does not have the energy. This is bad.)

Astrid lifted Kate’s sleeve a bit and looked positively shocked when she saw the blood soaked paper that had tried to hold back the blood in vain. Kate came quickly to her own defence:

“I won’t do it again! It was just one time!” Kate knew that was not true, but she was willing to say anything to get rid of Astrid.

(Is this the dilemma again? Being forced to cover over your own imprisonment just when a kind person wants to help and has seen something right. Is it not terribly destructive for a person’s perception of oneself to be put in that situation?)

In a firm and serious tone of voice, she asked Kate to accompany her out of the room. Kate, ashamed and fearing that her classmates would see how weak she was, tried to get up, but her legs would not carry her. Kate sent Astrid a look that told Astrid that the legs refused to lift Kate off the chair. Astrid told Kate to wait there and bolted out of the classroom. Kate was ashamed and knew that it was all wrong with her.

(No, you do need help, Kate. You are allowed to. It is right.)

It was not nice of her to make Astrid so worried.

(Astrid’s worry is not your creation, Kate. It is not a pain that you have inflicted on her. Astrid’s worry (and I think that word is an understatement) is a result of Astrid’s moral character and her responsibilities and duties to other people in general and to children and pupils in particular. In fact, she must feel that way as a moral being and a responsible schoolteacher. That is not something you have created, Kate. You are entitled to Astrid’s worry, Kate. You are entitled in being the occasion for the activation of Astrid’s moral character and duties to other people)

Kate found it more difficult to stay awake and again supported her head on her arm.

Kate suddenly awoke at someone pulling at her. It was Astrid and some other teachers. Kate could not quite figure out what had happened — or where she was.

(It makes me silent inside to read this, Kate. Because I think you lost consciousness just now. I think you are in very serious danger, Kate. Will you please let the adults do what it takes to help you? These people wish you no harm. I know that is probably difficult for you to believe, but will you try please?)

She was not in the classroom any longer but was lying on the floor in another room. A bunch of teachers stood around her. They looked uneasy and talked amongst each other in serious voices. Astrid had put Kate’s head in her lap, while someone else was in the process of cutting open Kate’s sleeve.

(I value the care that Astrid shows by doing like this. That is caring in a fundamental human way with no professional distance. I am drawn to the fact that the dream allows Astrid to do this.)

“You mustn’t!” Kate burst out. Kate panicked and tried to free herself. One of the teachers yelled, “She’s trying to grab the scissors!”

(Do they think Kate can be a danger to herself?)

But that was all wrong. Kate just wanted to get free and look after her jumper.

(Dear Kate. You always look after everything so well, and also other people. But right now, you are more important than the jumper. You yourself are precious. The jumper is just a thing. You are a human being.)

Astrid stroked Kate on the forehead and assured her that nothing would happen to her, that she was in safe hands and that they just wanted to put a band-aid on it.

(Thank you, Astrid. I think that is the right thing to do. And thank you to the dream for letting Astrid do this.)

Thinking a band-aid would be nice enough, Kate calmed down.

(Good!)

When they lifted up her sleeve entirely, they could clearly see the many bruises and the blood seeping from the toilet paper. They exchanged serious looks along with some sign that Kate did not understand.

(I think they realize something of what Kate is subjected to. I think that they think it is horrible that a child has been treated in such a way. And I think they may understand something about why Kate has done as she has. That she suffers and tries desperately to do something about the pain and the fear and the humiliations she is subject to.)

The school nurse removed the paper. When the paper was all gone, the blood flowed onto the floor. Panic shone in their eyes and they got busy.

(It is really serious. I hope Kate makes it.)

Kate felt that she was all wrong because the blood had not coagulated by itself.

(That is for the blood to decide. You cannot decide that, Kate. It is not about whether you are wrong. If I were to point out who was wrong in all this, you would not even make the list. You would make the top of the opposite list.)

A teacher passed some more towels to the school nurse and they put them on her arm and pressed hard. The school nurse looked at one of the teachers and asked, “Will you make the call?” The teacher confirmed the order and ran. She tied the towel tightly and pointed further up.

“Look!” They began to evaluate Kate’s bruises, but Kate was too tired to fight against it and could not keep her eyes open. While they shook her, she only managed to feel how the blood in her veins pounded against the tight bandage. Everything was hazy and confusing, but it was quite nice to be unable to think.

(This sounds so desperate. So utterly desperate. That the reality in which you live is so horrible that you just want to not think, and that to be able to escape thinking, you have to not be able to.)

When Kate woke up again, they were taking off her jumper. Kate resisted and Astrid asked them to stop. They did.

(I think they understand something here. I think they become aware of Kate’s dignity and the inviolability of her body — especially in light of how others have transgressed against that inviolability.)

As Astrid lifted her arm, Kate noticed that Astrid had goose bumps. “Oh, I have hurt her!”

(Dear Kate, you have not hurt Astrid. It is true that what is happening here is painful for Astrid. But it is not an evil you have inflicted on her. Astrid’s pain is a consequence of her morality and humanity and her care for others – including you, Kate. Astrid’s pain is testament to her moral character and human qualities. It is not your fault, Kate. You deserve Astrid’s worry. You desperately need people who are intensely worried for you, or else I think you may die. And it would not be best to die. That would be a loss for the world and for those who care about you, and a loss of what your life might turn into. Your fate is not sealed. Your life is so young. You are still all new. Life is not only this.)

Kate felt bad and felt tears coming. “1-2-3-4-5-6-7…..” That helped Kate regain control.

When Kate woke up again, more footsteps could be heard, and a panicky voice shouting, “It’s in here!” More people came in. Four of them were paramedics. “I don’t like men,” Kate thought and was reminded of her dad.

(That is understandable.)

“He will get SO angry when he finds out I have caused so much attention… and they haven’t even seen the bruises.”

(HE will be angry about what YOU have done? That pathetic excuse for a man who with such vile and cowardice blames his daughter for the consequences of his own actions. He should be ashamed! What kind of thing is this to do against another human being, and even a child this loyal?! May you choke on it, Kate’s “dad.”)

One of the paramedics pushed hard on Kate’s collarbone, so she opened her eyes again.

(Then they are worried. This is done to see if a person has cardiac arrest)

“Am I sleeping?” asked Kate. “Why am I sleeping?” she mumbled. Said Astrid calmingly:

“You must be tired.” Kate smiled inside — they knew nothing!

(Oh, Kate. You are far away. But I am glad that you don’t feel fear. That way you suffer less right now.)

One of the ambulance people said something to Kate about staying awake and staying with them. Kate did not understand, because she was right there?! Another asked where she got the bruises? Kate knew they wanted her to say something bad about mom and dad, and that would give them an excuse to send her to the orphanage,

(Have your parents made threats about this to you, Kate? Have they frightened you with such tales to silence you and not reveal the horrors that they inflict on you? Remorseless cowards! To think to scare a child into being one’s own prison keeper.)

but Kate didn’t want to leave her sister.

(Yes. Y