Now, this would also focus on concerns about climate change; although, I think in the ‘90s, climate change was not the pressing crisis that it is now. Ecopsychology kind of came about like a lot of movements — outside of academia and outside of the mainstream schools of psychotherapy. In some ways, it was a reaction to them in the sense of the lack of obvious presence or mention of nature, the natural world, and other species in classic psychotherapy, which, in the lingo, we’d consider more anthropocentric, more human-centric. These folks were more eco-centric; they were thinking more in terms of ecology. And so, once you start to think more ecologically, it does bring all this stuff up. All these ideas in ecopsychology are pretty understandable now and actually have gotten well into the mainstream.
It’s about people thinking of their ideas — their identity — in the sense of their connection with nature, and the value of, as you know, being out in nature for our mental health. A lot of the research has caught up with these ideas as well. There’s a very robust body of research on nature connections and mental, as well as physical health. And so, yeah, ecopsychology, at least up to recently, has kind of existed on the outside, as a commentary.
When I was teaching, I would distinguish between environmental psychology, which is a subfield of psychology, and was started by researchers that were studying how people interacted with places and with buildings, and with architecture and landscape design. Issues such as why certain landscapes are more pleasing or easy to navigate, studying things like noise and crowding.
And then, environmental psychology, in the late ‘60s and early ‘70s became more environmental in terms of thinking about environmental problems, the design of recycling programs and things like that. It’s also separate from clinical practice. It’s not a therapeutic or clinical field; it’s an academic research field. But with ecopsychology, and with my work, and with what’s going on now, these things are kind of coming together.
If you draw a box that’s labeled psychology, we can put all kinds of things in that box and study all kinds of things from a psychological perspective. You know, we can study relationships; we can study human development; we can study pathology. We can also study our relationships with the environment from a psychological perspective. But it’s a different endeavor to create a box that’s called ecology, and then put a smaller box in there called psychology. Then we’re actually practicing psychology from a different base.
It helps us realize that “wow, I didn’t realize that traditional psychology had such a human focus which is really tied in with the enlightenment and the idea of human superiority over nature. I like that idea of thinking of ecology as a larger sphere, and then the question would become, “What could or should psychology look like if it focused instead on people, not apart from or above nature, but as natural beings on the planet?” It’s pretty interesting philosophically. And then, unfortunately, the press and distress of environmental issues broadly, and climate change more specifically and in the short term, have really put a lot of pressure on people to start thinking about this, essentially whether they like it or not.
Therapists might have to learn about a new disorder, a new form of treatment, or a social phenomenon like different gender presentations. But the therapists themselves might not personally be experiencing any of these things. But with climate, with the climate crisis, therapists, like everyone else, are experiencing disasters: smoke, heat, flooding, storms. They’re going through it right alongside everyone else. So, there's a double urgency here. And then, what happens is that as people get involved in this, they begin to realize, “Oh, I didn't know there was ecopsychology and environmental psychology, and that people have been writing books and thinking about this for a long time.” So, they’re kind of rediscovering these things for a new generation.
And we have our lowercase “i” issues, which is our stuff: our own personalities, our own strengths and weaknesses, our vulnerabilities, our losses, our traumas, our neuroses. So, when I'm working with people, I'm trying to hold both of those things in conversation; people obviously resonate with larger social issues that have some relevance for them personally, and then that could be an obvious undoing process from their own background or work, dealing with their own traumas in a classic sense. Or it just resonates with their values, or they’re seeing it playing out in their communities. So, all that intrapsychic stuff is relevant.
So, what exactly is healthy, and what is the role of psychotherapy in promoting it? What has been in the shadows and largely ignored in therapy like spirituality, has turned out to be quite important? I think it is the same with environmental issues. I work with a lot of therapists that are seeking to be climate-conscious. They're either wanting to get some basic skills or they’re even wanting to specialize in this area. And part of how you specialize in any area is that you advertise your specialty.
People wouldn’t seek you out for any problem unless they somehow got a signal that you worked in that area. There’s a permission giving. There’s a permission giving to say, “Yes, I'm open to talking about these kinds of things.” unlike in past years, just mentioning LGBT somewhere on your webpage to acknowledge that you work with people of different sexual orientations is common now. It gives permission for clients to know that you deal with spirituality or trauma or workplace concerns or substance abuse. You get the idea! And so, it’s like an experiment and I’ll even encourage readers to think about this. Just add ‘environmental concerns and/or climate concern’ to your list of services and you'll be surprised.
I think we have an ethical responsibility to talk about climate and environmental issues because they are the biggest public health threat that the world has ever faced. And it is only going to get worse. We know very well from science that more climate-related weather problems and disasters are going to occur all over the US and all over the world, and people are going to be affected by these. To not talk about the greatest public health threat in history seems odd to me. So, I think psychologists and therapists have a responsibility to learn a bit about this.
But the rub is that it’s politicized, so it’s not a clean topic, and that’s another part of the climate elephant. I use this metaphor of the elephant in different ways with climate change. It’s the elephant in the room, obviously. It’s something that’s not acknowledged for a number of reasons. Partly, it’s an inconvenient truth, as Al Gore says. It affects our entire economic and political system to talk about these things. I think it’s ethically responsible to know a little bit about it and to let the public know that you’re open to talk about this if people want to.
People can take it further if they want. A number of therapists I know are personally interested in this for themselves and find that it’s something they want to get more deeply into. Because of my background doing the Ecopsychology Journal, I’ve had to learn a lot about this stuff. These are like extra degrees that I’ve picked up over the years. And so, there’s just a wealth of information out there. It can easily be a specialty or even just a personal exploration for someone’s own identity and health. There are a couple of different ways to approach it.
Essentially, bringing environmental issues into the therapy room would be a form of ecotherapy, as would taking the therapy process either outside in terms of walking sessions, or sessions that are done in an outdoor space where the actual natural environment is more a part of the process. So, it can go in different directions, but there's generally some sort of intent there to recognize nature and the natural world and our ecological connections.
Many therapists don't necessarily think of themselves as ecotherapists, but they’ve integrated outdoor and walking since COVID. I find walking therapy quite interesting because it’s kind of its own thing. It’s a technique, but some people think of themselves as walking therapists; it becomes kind of an orientation. I was just meeting with a therapy group this morning with people from around the US, Italy, and India. We were talking about walking therapy, and if you Google walking therapy, even in the last year, you’ll see how it’s exploded. Walking therapy doesn’t automatically have the deeper ecological thinking component of ecopsychology, though it can be practiced that way. What it shares with ecotherapy is a different view of the container of therapy, and also adds a movement and experiential component. It doesn’t have the environmental-political angle of ecotherapy, which tends to be environmental, in terms of environmental politics. But walking therapy is quite fascinating.
As a tangent, just think of the explosion of psychedelic therapies in the last couple of years. I was just at the American Association for Behavioral and Cognitive Therapy Conference here because it met nearby. I was speaking on a panel on some of these environmental issues there. But it surprised me to see all the psychedelic therapy work there at this behavioral therapy conference. Things change rapidly; walking therapy is more accepted, psychedelic therapy, more accepted. Ecotherapy is more accepted as well for all the reasons we’ve been talking about.
When I help therapists think about walking therapy, it’s actually quite interesting. I haven’t really thought about it directly in existential terms, but it is because we think about our existence as a being in relation to other beings and in time and in weather: it’s inherently transpersonal in the sense that it takes us out of ourselves. So, we can think of walking therapy as transpersonal. We can think of it as existential. I tend to think of it as an embodied approach because when I am walking and moving, my body, my brain works slightly differently than when I’m sitting in a room. And so, I think of it as a brain-based approach because it activates things similar to EMDR; it’s activating the brain in bilateral ways.
You might experiment with reflecting on something in a room in a stationary setting, and then reflecting on the same content while you’re walking. It’s hard to describe, but it feels different, and it’s more empowering. There was a great story in Outside Magazine this writer Erica Berry interviewed me about. We did walking sessions, and she wrote about it. She had a great quote. She said, “It was hard to feel powerless when you were reminded with every step of your power.” As we were walking, she shared feeling empowered. So, I totally agree with what you’re saying is that this modality does add all kinds of things. It’s quite healthy, and it’s more therapy-friendly than you think in terms of all the different orientations that are likely to come into play.
And so, it does exacerbate people’s natural tendencies to be anxious, and with someone who already has trauma or other anxieties, or have experienced earlier disasters in their life, then new ones can really tip things over. Young moms, postpartum moms who are already highly protective of their young ones, are going to be hyperactivated by smoke and heat because it is literally dangerous to babies. So, you’ve got all that to cope with. And then, of course, people feel natural concern and loss about issues like extinction and lack of places, especially when certain iconic places are destroyed, like Lahaina in Hawaii, or from the fires in California. The Hawaii fires were catastrophic, not only locally, but many people had emotional connections with that place, these places they had visited, Maui and Lahaina. And so, it touched a lot of people.
So that grief and loss is right under the surface. It’s a chronic issue when I talk to people. When you get people to open up, these issues come up. I don’t think I’ve ever met anyone who doesn’t have some of this going on. So yes, it’s important. Erica later said, “As we continued up the hill, I tried to recall where my train of thought had stopped, but it no longer felt important,” because we had seen a bird, and we were listening to the bird. And she said, “I had been talking about suppressing climate sadness because I didn’t want to sound like an evangelist or bum my loved ones out. But now, I was thinking about the bird, and wasn’t that the opposite of doom brain, tuning into all that lived around me.”
She added, “This sort of reflection certainly wouldn’t happen in a therapy office, but it wasn’t a bad thing. You know, the bird had, for a moment, airlifted me out of my anxiety.” So that idea of being present in nature and walking gives us this expanded scope, and you can think about these things and contain them, but you’re also living. You’re also in the moment in a way that’s just quite different. So, there is a tie-in between eco-anxiety and some of these modalities. People do seek out therapists that can help them with eco-grief or anxiety, either because the person’s highly connected with nature, or they’re an environmental professional or a climate scientist, or they’ve dealt with a disaster; or it’s just a developmental stage for them.
There’s a concept called the “Waking Up Syndrome,” where people just become aware — they have an ecological awakening of some sort. Many people have this in school, when they’re in college or graduate school, or when they’re studying things, they realize, “Wow, everything is connected, and there’s a system here, and I just didn’t realize, and I never realized the scope of some of these things.” So, there’s a natural developmental experience that most every adult can speak to where they kind of woke up to the world. They woke up to the state of the world. They became adults. They became aware of the systems, and of justice and injustice and identity and all these kinds of things. And sometimes we have a container to hold that and someplace to process that—a mentor or parent or counselor. Many people don’t. It’s like a rite of passage.
Countertransference is unconscious, right. And so, it’s really that kind of conspiracy of, “I’m not going to bring this up because I don’t know how to handle it. “I don’t want to expose either of us to something that we can’t cope with,” right? I think that therapists are coming to grips with this. They’re people, and they have their own environmental identity, right? You were hinting at this in your earlier comments. So, we have a sense of our environmental identity, our sense of connection, our sense of ourselves as a human in relation and nature in the natural world.
It’s implicit for everyone until we talk about it, just like any other form of identity: our gender identity, sexual identity, cultural identity; we have all the values and beliefs in action, but unless we’re taught to think and have a metacognition about them, we can’t necessarily elucidate it. It is similar to environmental identity. When therapists start to understand their own environmental identity and feel comfortable with it, they can better understand how, when, and when not to bring it into therapy.
We’re not perfect. We’re flawed people. Everyone wants to do more. We’re in a tough system. Most people are constrained. We’re hostages to a system that’s quite unsustainable. We don’t control it. Once we learn to forgive ourselves and to be comfortable with our own environmental story, then we can sit comfortably with other people’s stories, right? And then we don’t have to solve climate change. You don’t have to solve climate change to cope with it.
We don’t have all the answers to our clients’ problems. That’s not our job. Our job is to support our clients while they’re seeking the answers. But to get to that level of comfort with the material in the room and let go of it so it can just be there, that’s where the developmental task is for the therapist. Some issues are so difficult, we’re never fully comfortable with them. But we learn to have the capacity to contain them and be with them. A lot of the challenge with doing ecotherapy is developing the capacity to sit with ecological issues in the therapy room, knowing that we cannot solve these things, and we may not solve them in our lifetime, but we do have values, and existentially, we do what we can and be our best self.
So, yes, I do think, for many, many reasons that understanding our unique connection with nature and the natural world, the outdoors, is just generally an essential life task. We’ve forgotten that we’ve evolved on a planet. We are creatures. We are animals. We didn’t come from a machine. We’ve forgotten all these things. Some people would laugh and say, “Well, of course, we forgot. How could we not?” But this speaks to our society and our culture not our essential selves. So yes, I do think it’s part of self-actualization. I think of Maslow a lot, too — all parts of his pyramid a
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.
Coming Full Circle: Helping a Young Couple Through Their Grief
A Matter of Death in Life
After seeing my last patient out, the sun in the back-office windows faded into twilight, darkly illuminating the autumn leaves. I began to feel weekend-ish, looking forward to a long, relaxed walk with Charley in the park, and the single gin and tonic with two limes, which I allowed myself on Friday evenings. As I put the day’s session notes on the desk, I saw the light blinking on the answering machine. One of my grad school colleagues and friend, Ben, sounded mildly upset.
“Hey Liz, I don’t know if you could see someone over the weekend, but a friend of mine just lost a baby to what they think is SIDS. They have a three-year-old son. They’re in shock and want to talk to someone about how to handle it with the kid. I thought of you immediately. It’s kind of urgent. Call me back.”
I sat quietly, letting this request wash over me. Was this a little too close to home, me aged 3 with the dead brother? But this felt urgent to me, as it was my story. Then with certainty and a whole-body-resolve, I thought, I could be of help. I dialed my colleague back.
“Liz? Hey, thanks for calling back.”
“Sure. Give me some details.”
“Upper-middle-class family. Lives on the west side. Dad seriously Type A. Mom too, but she has an arty vibe. The dad, Mark, left early for work this morning and when mom got up later, she thought it was strange her one-year-old daughter Bonny hadn’t woken her up. Claire, the mom, found the baby blue and not breathing in the crib and called 911. Claire tried not to panic, because Angus, the three-year-old, was up. Angus saw the cops and the medics and watched as the baby was taken out of the apartment. I think Claire was really freaking out too. Mark called me — he is a friend of my brother’s — after the baby was pronounced dead at the hospital. He is worried about his wife and his son.”
“I can see them tomorrow morning before yoga. Nine?”
“Sure.”
“Did the father describe the three-year-old’s reaction at all?”
“I think he is usually pretty rambunctious but after it all went down, apparently the kid has refused to talk and is very subdued.”
“Got it. Why don’t you just call them back with the time and give them my name, the office address, and my cell number in case by morning they change their minds. I assume they can afford a full fee?”
“Definitely,” Ben responded. “Great, I knew you were the person for this.”
“Thanks.” I hesitated and then said, “I think I am too.”
Ben was a good guy. We had bonded over leukemia; Ben got sick with it in adolescence and had been able to tell me about that experience. This helped me to know what it may have been like for my brother. Sometimes the universe is a sticky web. We get stuck in with those we need to know.
As I hung up, I realized I was somewhat daunted by the intensity of this referral, but felt it was necessary I take it on. What will I learn by touching the rawest parental grief over a lost child? Would I learn something about what my parents really went through when Jim died, or what I went through then too?
The weekend feeling vanished, but I was still up to mixing my gin and tonic.
The next morning, I knew I needed to be centered and calm. Before my shower, I breathed in the roses on the terrace and then gave Charley’s belly some extra rubbing. As Charley and I walked to the office, I kept my awareness on what I could take in through my senses: the silver-grey concrete, the smell of traffic, the feeling of my foot hitting the pavement, and the cool morning air. I would have to steady my own feelings, so my own ancient grief did not disrupt what the family needed to bring to me. I had been known to get tears in my eyes when my patients were in pain.
At the office, Charley snoozed under my desk, and I settled into my buttery soft leather shrink chair. I kept working to find the right emotional space to work from — calm, steady, receptive. I didn’t get to stay put long when the outer doorbell rang. Game on.
A Sense of Helpless Defeat
I tried to softly smile as I greeted them. “Hi, I’m Liz Tingley. Please do come in.”
The father shoved out his hand and said, “Mark McNitt. This is my wife, Claire Holm.” They were in their late twenties, both tall, the woman quite thin. She was blond and the man’s hair had a reddish tint. They wore jeans, he with a jacket and button-down shirt. She had on a light-colored linen sweater, her long blond hair held back from her face in a ponytail. Their expressions were somber. Neither looked like they had slept.
I studied her face, pressed lips, red, swollen dull eyes. This plummeted me back to my own mother’s dark hole eyes the morning after my brother died, the look that made me back away so as to not get sucked all the way into her blackness. I felt a muscle in my neck tighten.
Stay in the present, Lizzie.
“Please come in,” I repeated, gesturing toward the adult patient chairs on one side of the room. Mark took his wife by the hand, almost depositing her in the first seat.
Type A alright, but protective too. She needs that now. That memory of my father pulling my mother to him, as we left the hospital where they learned Jim would die, reverberated in my head.
“Ben only told me a bit of what’s happened to you,” I said as I sat back. I made eye contact with each of them slowly, lingering a bit with Claire, her eyes tearing as she met my gaze. “Just tell me where you are.”
Mark reached over to hold Claire’s hand. He spoke first. “In shock, really.” Claire nodded.
“Yes. And it will take a while for that to wear off,” I said softly and paused. “Do you want to tell me about it?”
Claire nodded. “It was a usual morning, except that we had been out late to friends for dinner with both kids the night before. We put the two of them down for bed about an hour or so later than usual. So, in the morning, when I didn’t hear Bonny stirring, I didn’t think anything of it.” She broke down, sobbing. Mark put his arm around her.
She must be feeling guilty, like if she had checked right away, the child might have lived.
“You had no reason to think it wasn’t normal for her to sleep in a little.”
Claire nodded as she sobbed. She pulled herself together. “Angus was playing in his room. I could hear him. So, I put the coffee on first and then went into Bonny’s room. She was lying on her side, with her head in an odd position. When I touched her, I knew something was wrong. She was blue. I screamed, grabbed her up, and called 911. They had me try to clear her airway and do mouth to mouth. When the paramedics got there, they took over. They took her away and I called Mark to meet them at the ER.” She looked down, her voice tapering off to a whisper and then she stopped.
Mark finished the story. “She was already dead,” he said. “The EMTs told me that at the hospital.” In a monotone, he continued, “They let me see her.” He teared up too but bravely went on. “They told me it was an unexplained death and they had to investigate. They called the Agency for Children’s Services and the cops. They’ve kind of been at the house since.”
Claire continued, “They said it’s a ‘SIDS-like’ death, but she was too old for SIDS.” She was trying to hold onto her tears but couldn’t. “She was nearly a month premature, but she had caught up at her one-year check-up. She seemed so healthy.”
“Yeah,” I said, trying to match my tone to hers, this inexplicable crazy fact of her dead baby.
“And Angus,” Claire again began to cry, with a panicked tone.
“That is why we are here, Dr. Tingley, to figure out what to do for him.” Mark sat up straight in his chair, ready for instructions.
Inwardly I groaned. They couldn’t fix this for their son, or for themselves any time soon, and I could see that at least Mark wanted a solution now. They were going to have to live in grief with him and themselves for a long while.
“Yes, let’s do talk about Angus. But let’s not go too fast to him. Before I can share what might help you with him, I want to know more about how you are experiencing today and yesterday. What has this been like for you?”
Claire sat back in her chair, with an air of defeat. “Devastated. And I feel a cascade of things. Exhaustion.”
That’s it, the sense of helpless defeat when you can’t protect your child. Though no one’s fault, it feels like a parental failure. I decided this was not the moment to elaborate this. What agency they had left they needed to carry them through the next few days.
Mark too leaned back in his chair, looked at his wife, and then made piercing eye contact with me. I held his gaze, to reflect the pain I saw on his face. Mark added slowly, “I didn’t know something could feel this bad.”
“Those feelings for you aren’t going away for a long time. And there is a lot to get through,” I replied.
“I know they just have to do their job, but I feel like both the cops and the social workers are very suspicious of us,” Claire reported.
I nodded.
Mark jumped in. “We know we didn’t do anything to cause this. The autopsy will show that. They just have to follow up.” Claire hung her head.
“You want to know how I am?” Mark continued, his tone now angry. “I am so mad. Not at the cops, but this is so unfair. Cosmically unjust. And Angus is suffering.”
Ah, he is trying to protect his son, because he “failed” to protect his daughter.
“It is,” I said with emphasis, “Completely unfair.”
Mark met my eyes again and a tiny sliver of real connection seemed present, but he was rushing to solve the problem at hand, his son’s trauma from this abrupt death of his sister. “So, what can we do to help Angus?”
I decided to work with his wish for some answers. “What has been his reaction so far?”
Claire grimaced. “I’m not sure what he was doing when I found her, and I was screaming and trying to breathe life into her. He came out into the living room when the EMTs arrived. He looked spooked. And my son is usually a little bit of a tough kid.” Here she smiled just a bit.
Mark added, “He is usually a little bit oblivious and is very active, in his own world.”
Claire went on, “After they took Bonny away, he started to cry and asked where she was going. I feel like I came to my senses then and told him she was sick and going in the ambulance to the hospital and that Daddy would meet her there. He seemed to take that in. I said Sandy, his babysitter, was coming while I went to the hospital too. He asked me to stay with him but then I left him with Sandy. She was reading to him when I went out. We didn’t know what to say when we came back, with Bonny dead.” Claire started to sob uncontrollably.
I sat, looking at them both, trying to generate warmth, allowing her strong affect to flow and for me to receive it. Mark went over to hold Claire, his eyes wet too. Finally, Claire’s sobs receded, and she sat up, grabbed a tissue from the table next to her.
“How does it feel to let it out?” I asked.
She smiled faintly. “It’s not like regular crying. It doesn’t get any better if you let it out or hold it in.”
“Yes, the grief is intense, and it won’t go away altogether, ever. It may, with time, be less intense.”
She nodded, then continued her description of Angus’s reaction to the chaos. “When we got back, Angus was not himself. He clearly knew that something was terribly wrong. He won’t talk now, not a word. And he is not his usual bundle of energy. He kind of just sits there.” Claire paused. “What should we say?”
“It’s hard to know how to explain this to him when you can’t explain it to yourselves,” I replied. Both parents looked so utterly sad, helpless, and young. “I don’t know what you should say exactly, but we can think about it together. It has to be honest. You have to say that she is dead, that her heart and brain stopped working, and that she is never coming back. Do you have any religious views that you want to give him about death?”
They glanced at each other and then said, “No, not really,” simultaneously. That was a good sign; they were attuned to each other. That could go a long way to help them get through this.
“Has he ever stopped talking before?” I asked.
Mark shook his head. “He did have some pronunciation problems and he’s had some speech therapy but no, he’s never stopped talking before. Though he is an action kind of kid usually.”
“How old is he exactly?”
“Three and a half.”
That gave me an idea of how he thought. Concretely. And with probably slightly underdeveloped narrative skills given what else they were saying about his language. It might be hard for him to participate in creating a coherent story about this.
“Okay. Basically, what I said before goes to the main point, to let him know that Bonny is dead.” I watched to see how they would react to this clear statement of the reality. Mark minimally flinched but I went on. “Angus will not understand death at his age. I always recommend the book The Dead Bird by the lady who wrote Goodnight Moon. It is simple and direct. You can read it to him over and over if he wants, to help him understand.”
Mark took out his phone and made a note of the book. “I will order it when we leave.”
I continued, “And even though you tell him once that Bonny is dead, he will likely need to hear it more than once, because he will understand it differently than you think he does. I mean, cartoons make sense to kids; when the guy gets run over and then he pops back up. Permanence doesn’t mean the same thing to preschoolers as it does to us.”
Both parents nodded.
“Don’t force him to talk but keep talking to him. Empathize with his state of shock. Label his feelings, including confusion. Children often regress under stress. His language sounds a little vulnerable. It’s not surprising that he might lose that. He might regress in other ways too, toileting for instance, or not being able to sleep alone.”
Mark almost chuckled. “Claire had him in our bed last night, and he had been in his own room for more than a year.”
“I had to be sure he would make it through the night, Mark,” Claire said, distressed.
“I understand completely,” I replied. “And it was wise. He needs your physical presence more than anything, and to the extent that you can, your emotional presence as well. Children are most reassured by their parents. You need to help him feel safe. Mark, can you be okay with that for now?”
“Of course. Claire, I didn’t mean…” She nodded at him.
Different Ways of Grieving
“One part of this, as you try to manage what Angus needs, is to allow each other to need things that might be different. There is a lot of research suggesting men and women often grieve differently.”
Claire asked, “What do you mean?”
“Let me ask Mark. When are you going back to work?”
“Oh, I’ll want to get back in a couple of days. I can’t imagine sitting around like this for very long.” Claire looked horrified.
“That is what I mean. To feel useful and in the routine can often feel like healing to men. Often, women find they just need more time together. And that conflict can be misunderstood by both. I wonder, Mark, if you really will want to get back to work so soon, and if you will be able to meet your need to do that and balance what Claire and Angus might need.”
Mark looked at his wife. “We can talk about it, of course.” She smiled for the first time.
“When we have the funeral, should Angus be there?” Claire asked.
“Yes, unless there is some compelling reason elsewise. But you need a back-up plan, in case he is disruptive or very upset, or you feel you can’t grieve as you need to with him there. Someone who could take him out and could bring him back. It has to be someone he knows and trusts. Though he won’t understand all the nuances, he will be a part of saying good-bye to his sister, with you and family and friends. That’s what matters,” I said.
I could have cried right then. I had succeeded in pushing my past out during most of the session, but something felt very big, pressing down inside of me, my own emotional exhaustion at trying to hold them and me at the same time. They were hurting and it hurt to see that, to feel the hurt with them, as I suggested what they do for Angus. Why couldn’t someone have said these things to my parents? Why? But I had to push that question away for the moment. I still had work to do.
“This is, not to sound clichéd, a process,” I continued. “It is going to take time. The goal with Angus is to help him have a story to tell himself about this time and about his lost sister, a story that will become part of his life story, that helps him feel that it is coherent and hangs together. To do that, you are also going to have to be willing to be with him over time and to talk about your own sadness and grief and confusion — of course in a modulated way when you can — so that he feels you all together.”
Mark let out a big sigh. “That fits with so much of my gut instinct, but already I can see that Claire’s mother wants to take him out to her house in Westchester, so we have time to cope and make arrangements. But I want him with us. Don’t you Claire?”
“I’m not letting him out of my sight for more than five minutes,” she answered forcefully.
“Is he close to his grandmother?” I asked.
“Well, yes and no. She travels a lot, but when she is around, she is super fun with him.”
Grandparent as playmate. Not what this kid needs right now.
“Some of that will be fine, but more as time goes on. You will deserve breaks sometimes, but now he needs you. As best you can, give him that,” I said softly. Both were quiet for a moment, and I saw Mark disconnect and return to some state of shock.
“I think this is enough for now,” Mark said. “You have given us the start, a preliminary road map. Claire?”
Claire nodded, tearing up slightly, and said, “Thank you Dr. Tingley. I feel like I have some better ideas about helping Angus.”
“I’m glad it feels helpful. It’s going to be a tough row to hoe, but I think you have what it takes to get it done. And remember, like always with parenting, taking care of yourselves is also a way to take care of Angus.” I made full-on eye contact, first with Claire and then Mark. “And remember I am here. Call if you need more.”
Claire bowed her head at me as they stood. Mark shook my hand.
When I returned to my chair, I let the tension of holding myself together through the session evaporate. Silently, I still felt all the same terror, confusion, sadness, helplessness, and anger as Mark and Claire, but I knew I had done decent work with them. I also thought, as Ben had said, that I was the perfect person for this — on many levels. It wasn’t just my 40-plus years in the field, working in childcare with toddlers, where I lived with children’s everyday tears and frustrations, or the career in academic developmental psychology where I learned the research that supported work with young children, or even my time as clinical psychologist, where I found a theoretical frame and the tools to connect with and manage pain and growth. It was all of that combined with my own experience of early loss, that brought me here to be able to do this job, this day. That felt satisfying.
There was another feeling, too. Gratitude. These two grieving people had come to me, trusted me, taken in my empathy and knowledge. I was honored they had let me in at such a time in their lives.
A circle was complete. My career began because I wanted people to take the emotional experience of young children seriously, as my parents had not. I had just done exactly this for Angus. This small child, whom I’d never even meet, allowed me to finish what I started, unconsciously, so very long ago, saving myself, and all the children I had touched in my career, from the denial of their young children’s grief and pain and the aftermath.
A quite different sensation took hold: I am done. I will not be compelled to do this work anymore. My mission is complete. I could work, but I didn’t have to, the compulsion gone. I slumped down, exhausted, and exhilarated. Was there time to get to yoga?
Postscript: I did not see the family again but heard from my colleague that they had relocated to Vermont and had another child. I also did not give up the practice of psychotherapy but now see many more adolescents and adults in my practice.
Donald Meichenbaum on Coping with Loss and Traumatic Bereavement
The Irony of a Trauma Specialist’s Tragic Loss
I’ve worked with head injured, so I’ve been involved in seeing such incidents. Remarkably, her hand was still warm when I caressed it. There was a chaplain sitting next to us and I asked her to take a picture of me holding her hand. I actually sent that picture to my daughter-in-law who made it into a pillow. So, it was a traumatic bereavement kind of situation.
The irony is that morning I was giving a Zoom lecture for therapists in China on how to cope with traumatic bereavement and prolonged and complicated grief. And by four o’clock that afternoon, I was living my lecture. So, one of the interesting aspects of all this, and I’d be happy to discuss it with you, is what is the immediate and more long-term impact on an individual such as myself, who is in some sense is an expert on the area of interventions — having developed cognitive behavioral techniques.
Interestingly, there are hundreds of these kinds of accidents, many in Florida, of people — for whatever reason, where the driver is not complying with the pedestrian crossing. And there are multiple accidents and deaths in this particular way. So, the issue of traumatic bereavement as compared to a kind of prolonged complicated grief is an issue that I have been preoccupied with. And moreover, I’ll just add this final note before we open it up for your further questions. There are two aspects that are really quite fascinating in the aftermath of such traumatic bereavement.
One has to do with dealing with the grief. And the other aspect that is not readily discussed by clinicians is the sequelae that follow the sudden death of a loved one. And I will give both you and the readers to this presentation, a keyword that will change your life forever. This is the most important thing you should take away from our discussion. And the one word that you need, Larry, that will change your life if you do not already have it in your repertoire, is “passwords.” If you do not have the password of your significant other who died in a traumatic fashion, you are screwed.
So, if they go to Google – Meichenbaum, Donald, Melissa, Institute – they will be able to download my 80-page tool plus other items on how to treat individuals who have traumatic bereavement and prolonged and complicated grief. So, if there’s anything I say that might be of help, I’m glad for that. And moreover, if there are people who want to contact me, they could do so through the Institute.
DM: To access a number of accounts, my life was such that my wife Marianne was a wonderful wife, a very competent person. She was an actress, and she was a June Taylor dancer. She looked after all of our finances. I’m not a very competent person other than psychology. I’m a really good psychologist. I know a lot.
But when it comes to life, she was what I would characterize as my surrogate frontal lobe. And therefore, I never knew how to run appliances or bank machines or any of these kinds of things, and she looked after it. So, to gain access to that information, you really need the passwords. Fortunately, I have four wonderful children who are competent and loving and supportive, and that helped a great deal. So, we were able to, over a lengthy period of time — trust me, it took more than an entire year — to settle accounts related to adaptive functioning and financial issues and the like.
I won’t trouble you and your audience, but to highlight how unfriendly, how totally unfriendly the system is, to the 1,000,000 people who lost loved ones due to COVID. You know, the 20,000 individuals who died by interpersonal violence. You know, the incidence of mass shootings and all the other kinds of episodes, you know, the 48,000 who have to survive the suicidal death of a loved one. So, this discussion is absolutely remarkably timely, let alone the loss of natural disasters. I mean, just think of all the people at Maui whose lives are just upturned, and the many wars and the like. So, dealing with loss, grieving, traumatic bereavement, and mourning has to be on the top agenda of every clinician.
Difficult Therapeutic Conversations
DM: We have to remind ourselves that what makes us effective therapists is the quality and nature of the therapeutic alliance that we establish, maintain, and monitor with our clients. So, to answer your question, I would advise clinicians to not enter that discussion without the permission of their clients. If I were in that situation, I would say something like, “I recently had a personal loss and I had a lot of lessons that I learned. And I was wondering if you would be interested or willing for me to share those.” So, my notion of being a good therapist is always to solicit permission from my clients, no matter what it is I want to ask. The third thing I would do is to say that, “you should feel free if this is not a good time or this is what we want to do, to put you in charge.” Remember that we, as therapists, need to be person-centered rather than protocol driven.
So, it sounds like, Larry, you had a whole bunch of to-do tasks that you think this elderly client or loved one should go through, right? You said you don’t want to traumatize them. Well, I agree totally. You know, so treat them with the same respect that you would want.
My client might choose to take that invitation or not. And moreover, if I am going to see that person again in the future, all I want to do is plant the seed, then I will be able to follow up. I would say maybe this isn’t the right time or I’m not the right person. But as I look around, I think it might be advisable. And even something as simple as knowing the password of your loved one might be a good starting point. So that’s my way of engaging people.
Lessons on Grieving through Personal Loss
And in fact, the Roadmap to Resilience has been downloaded for free on the Internet by 45,000 people in 138 countries. So now, let’s get to the heart of your question. In fact, George Bonanno wrote a really nice book called The Other Side of Sadness, which I recommend. It’s a nice little extrapolation on the kind of resilience engendering behavior. Therese Rando has also developed a concept that I’d like to comment on, that she calls “STUGs,” Sudden Temporary Upsurges in Grief.”
And in monitoring my own behavior, since I’m a psychologist and good observer, I’ve tracked my own STUGs. These kind of substantial or sudden kinds of upsurges of grief. And there are two kinds of STUGs in my life that I’ve discovered that have important clinical implications. The first STUGs are sort of sudden and unexpected. A song comes up, an invitation comes up to go to dinner with someone who doesn’t know about my wife’s loss. A couple walks by holding hands and lovingly convey their intimate connection.
And that hits me in an unexpected way. I’m moved to tears, and I have a sense of loss and the like. And there’s nothing wrong with that. In fact, I’ve come to believe that each tear that I experience in loss is not only a reflection of the loss and the grief and how much I miss her and the like, but it’s also a tear of appreciation. Of how lucky I was and grateful to have her in my life all these years. And then, I would have never had this career and all that without her. I’m a cognitive behavior therapist, so the whole thing is not that you cry, not that you feel losses.
It’s what is the story you tell yourself and others about that emotion? Each of us, each of your readers of this interview are not only Homo Sapiens, but they’re Homo Narrans. That we’re actually all storytellers. And the nature of the story we tell will determine — I’m going to suggest — whether you fall into the 20 percent who develop prolonged and complicated grief, or you’re part of the 70 to 80 percent who, in spite of the loss, everlasting loss, your STUG is this kind of sudden reminder.
And when she died, those social contacts sort of evaporated. People sort of give you occasional email and a “how are you doing?” But you don’t get invited to the same social occasions or dinners or other kinds of activities, so your network is really an important issue. And the important predictor here, especially among men, is loneliness. Okay, and there’s a higher incidence of husbands dying soon after the death of their wife, about 30 percent and so forth, and having other kinds of physical ailments than the other way around.
And then you need to distinguish between loneliness and isolation. Some people choose to isolate — they like being alone and so forth. Loneliness is yearning for this. And so first of all, in the aftermath of both traumatic bereavement and in terms of the mourning process, that becomes important. The other thing that your readers should take away is that there are no stages of grieving. So Kubler-Ross and Ron Kessler’s stuff about going through stages has no scientific basis for it.
And not only do you not have the five stages, but the expectation on the part of the clinician that people need to go through stages, and the failure to do so is a sign of pathology, is indeed problematic and possibly stress-engendering. So, when people don’t get angry, okay, then it’s deniable or they can’t handle their emotions. And I had a pretty good cause to be angry. This happened in Florida, okay? So, the guy who killed my wife got fined 160 dollars and lost his license for three months.
That was the total consequence. Not only that, in Florida — this is a wonderful state to live in if you’re going to retire — you don’t have to have liability insurance on your car. Okay? All you need to do is pay insurance up to 10,000 dollars. The helicopter cost of taking my wife from Clearwater to the trauma center was 68,000 dollars. So not only do I have, look, how much time do we have? You want me to go on and on? So, what am I going to do? And anger we know, gets in the way of processing trauma memories. Of all the emotions, that’s the one you don’t want to give up to. And that’s the one that clinicians should ask about in the aftermath.
So, if you go to the handout that I have, I have put together the most important diagnostic questions that clinicians should ask. Yeah, I give workshops on grief, and I actually bring my pillow and tell people. And I ask, if I’m your client, Larry, what questions do you think you should ask me? You’re a gifted clinician. What do you think are the most important questions you should ask me to see whether I’m going to develop prolonged grief disorders? Because there are now effective treatments. Shearer and others have created really good cognitive behavioral interventions, when I go on and on and review all the literature. So, I can make this a two-way street. I could ask you, what question do you think you should ask me first?
LR: It’s refreshing and intimidating at the same time. What other guidance are you offering to clinicians who maybe are sheepish about asking the questions, or will not openly receive or seek out clients who have experienced loss?
And apropos of the loss and transition website by Neimeyer and colleagues, they have a lot of techniques. Some of them are expressive. Some of these are customary activities that people engage in. So, you, the clinician, need to honor the way in which I want to cope with grief. Okay? And I recently went to a workshop by Mary Francis O’Connor who wrote a book on the grieving brain. And you need to recognize that some of the losses that people experience are natural and a reflection of love.
So don’t pathologize people’s grief or their coping techniques. If I want to avoid certain activities, I don’t go and get rid of the clothing and so forth. And there was a movie that Tom Hanks made that his wife produced called, A Man Called Otto. It’s a bit of a Hollywood version, but they did a really good job on talking at the gravesite. And doing the thing on the clothes. Here’s a wonderful thing that happens. When I cleaned out my wife’s closet, I found out that for the five years that we courted each other, we had written letters. And mind you, that was 1961. She saved all those letters. In 1961, a stamp was four cents. I read those letters as if she was present, each night I take out a couple. I’m now up to 1963, you know that stamps now cost $0.08 in 1963? Her presence, my storytelling, my doing this interview, my reading the letters, are all my own personal ways to honor her memory. The fact that I put the Roadmap to Resilience online for free in her memory.
If you go to the Melissa Institute website, if you’re interested, if you like this interview, go there and make a donation in my wife’s name. We’ve already raised 25,000 dollars for the Institute against violence prevention for her. I’m now in the midst of having done this legacy course of ten one-hour lectures on what makes someone an expert therapist, and then how to take those core principles and the transtheoretical behavior change principles and apply them to a whole host of diverse problems like grief and PTSD and anger and the like.
Each of those courses is only going to cost 150 dollars. Okay, that’s 15 dollars per CEU. All that money is going to go to the Institute in memory of Marianne. So, if you want more of what we’re talking about, track down this legacy course. If you do, there’s the likelihood you’ll be in the 25 percent group and you’ll be able to honor my wife’s memory. You get CEU’s for cheap.
The Role of Resilience in Healing through Grief
You can go to the Trevor Project on suicide. You can go to Mothers Against Drunk Driving. There are numerable examples, I give multiple websites of how people have transformed their pain into something good. That doesn’t mean that you don’t continue to have an everlasting sense of grief. There’s nothing wrong with grief. It’s like any other emotion. The key is, what do people do with that emotion? Do they withdraw? Do they isolate? Do they become lonely? Do they use addictions? Do they self-medicate?
So, the key question is not, apropos of the resilience, or that people grieve. The fact that people are in touch with their grief is, in fact, a sign of resilience, right? It’s coming to, how do they honor? How do they memorialize? I deal a lot with returning soldiers. And the other kind of thing is that there are different kinds of losses. There’s loss of people, but there’s a thing called missing loss also. Like imagine people who have individuals who go missing in action. You don’t know if they’re dead right, or in Maui — you know, they haven’t found certain bodies. I mean, does that mean, is there more?
How do I, do I sort of get preoccupied and ruminate about the loss of my loved one, and how I wasn’t there? If I have guilt, shame, humiliation, if I have anger, if these kinds of negative emotions are that which drives me, then that’s the person, those are the folks who are going to be more likely to get stuck, who have hot cognitions and the like. So, you can talk about resilience being the absence of negative stuff, or resilience could be the restorative process on the other end. I don’t know if I’m getting close to your concerns, but…
DM: Here’s one of the things I failed to mention. The research indicates that people who have had a prior major depressive disorder are significantly more likely to develop prolonged and complicated grief. So, when I was asking the question, I ask, “Have you had similar losses in the past” and so forth? What we could do is look for vulnerability factors, okay, that are red flags as another tip. To see who would warrant evidence-based interventions, we’re pretty good.
If you look at my core task, there’s a whole way of how we, as therapists, do psychoeducation to educate people about grief. Or how do we help them develop various kinds of coping strategies? And how do we get them to follow through? The big thing is how do you get people who need help to want to come for help? And help them stay there? That’s the artistry of therapists.
DM: Well, a lot. There’s a fair amount of research by Camille Wortman and Roxanne Silver. Obviously, one of the building blocks for resilience is relationships. I mentioned I have four loving kids who really came to support, I have other people — professionally and others — who’ve come to support. But Wortman then really found a whole bunch of things that people do that are unproductive, that actually make people worse.
They have identified a variety of things that people provide support for, and actually make people worse. Like moving on statements. Things like, “You’re still a young, attractive, bright guy. You’ll find someone. How much longer before you die, You’ll be able to join him. This was God’s mission, He knew something.” So, there are lots of things that social support people offered, so that’s one of the questions you need to ask.
What, if anything, have people done or failed to do that you found helpful or unhelpful, right? Because you want to make sure that you, the therapist, aren’t doing something that I perceive as being unhelpful. So, if you’re a really good therapist, let your patients teach you how to do therapy. Don’t think just because you went to graduate school or took some workshop that you know how. Ask your patient, “What do you think is causing you to still have this lingering grief? And what do you think it will take to help you to move on? And what is it that I, the therapist can do to help you in that process?”
LR: You know, Bob Niemeyer suggests that therapists working in the arena of grief need to be what he calls the guide on the side, rather than the sage on the stage.
DM: Yeah. I like that. That’s a good metaphor. I like him a lot. I’ve read all his stuff. And, you know, my thing is, don’t be a surrogate frontal lobe for your patients. Don’t let the person’s emotions hijack their frontal lobe.
LR: And don’t, as the therapist, let your emotions hijack your presence in therapy. What about those therapists who themselves have had complicated losses, or unfinished business with their own children, parents, and spouses who have died?
DM: Well, I guess those therapists need to be honest with themselves and wonder how it impacts their therapeutic process. Those therapists need to be honest with themselves and decide whether, in fact, they need some therapy. That could help them deal with the issue. And the third kind of issue is, can they strategically use that self-disclosure in a way that facilitates or benefits the patient’s recovery? Rather than saying, you think you’ve got problems with your wife? You want to know what living with cancer has been like? And not only that, my father has Alzheimer’s, and now all of a sudden I have to listen to your shit, right?
So, you can judiciously, strategically say words are inadequate to describe what grief is like. I’ve been there myself. It’s not the occasion for me to share the details, but I want you to know I’ve felt the pain. Okay, I don’t know what the right words are, and you have to say it in an effective way. You can’t say, you think you got problems?
LR: In what way are you — are there any ways that you’re still practicing as a therapist now?
DM: I do a lot of consulting. I work with the head injured thing when people have cases, I train therapists who are doing supervision. I’m not seeing patients now like I did in the past, because I’m not in one place. I’m kind of a peripatetic clinician, so it’s hard to make a commitment to someone being there. I do some consultation with patients by telephone, since COVID.
LR: We could talk for hours Don and I do I hope we talk again. I appreciate your kindness and generosity.
DM: Thank you for the compliment and for inviting me on this journey.
©2024, Psychotherapy.net
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
A Shared Diagnosis: Managing Breast Cancer Together
Over the course of my treatment for breast cancer, I found myself feeling professionally challenged in many ways. But the most significant source of my growth as a therapist during this time came from the fact that I was following in the path of one of my own patients, Jessica Chin (a pseudonym). She was diagnosed with breast cancer in 2019, and three years later I would receive the same diagnosis while she was still in treatment with me. At my request, and with homage to Irv Yalom’s Every Day Gets a Little Closer, Jessica shared her thoughts (in italics) throughout this essay. Working together was a privilege and it is my hope that our combined voices will serve to deepen the conversation about the potential impact of a therapy relationship for both patient and therapist.
In our profession, we rely on our ability to treat people who differ from us in a variety of ways. Our training and our capacity for empathy allow us to develop deep connections with patients despite differences in such things as age, gender, and ethnicity.
In contrast, my experience with Jessica highlighted for me the complexity and power of having a shared experience with a patient.
Working Therapeutically in Uncharted Territory
Jessica first came to my office in 2012 to discuss generational issues in her Asian family. Through our work, her self-esteem improved. She found her own voice and was able to extricate herself from the family business, marry, and move to another state. We ended our work together after four years, and both felt encouraged by her progress and the prospects for her future.
Unexpectedly, three years later, she was diagnosed with breast cancer at the age of 35 and reached out to me seeking to resume therapy. Her prognosis was good, but the road ahead was scary and fraught. She had chemotherapy, followed by surgery, and then radiation. Although she and her husband had decided that they did not want to have children, the fact that her treatment would lead to early menopause and the consequent side effects was a harsh reality to absorb.
When I was diagnosed, I immediately thought of reaching out to Maggie. I thankfully had family and friends to lean on, but I needed support from someone that understood the nuances of my family and personal history and how it could impact my treatment and wellbeing. I also needed an outside perspective to help navigate my treatment. Genetic testing revealed I have a positive gene mutation which meant I could choose a bilateral or double mastectomy rather than a lumpectomy and radiation. There was also data suggesting those who carry this genetic mutation might have a higher chance of breast cancer recurrence if exposed to radiation. I spent most of my sessions with Maggie weighing pros and cons and what if's. She regularly advised me to make the decision that was backed by data and to lean into what felt right to me. There would be what if's no matter what — only I knew what I could manage during this time and to hold onto that. This advice grounded me in my personal and medical decisions throughout treatment and to this day.
I had been in practice for over 30 years at the time of Jessica’s diagnosis, but I had almost no experience working with patients who were actively undergoing cancer treatment. Even more surprising, despite the prevalence of breast cancer (1 in 8 women in the United States receive a diagnosis of breast cancer over the course of their lifetimes) I had never had a patient undergoing treatment for breast cancer while in my practice. My instinct was to help Jessica hear her own voice through the cacophony of advice she was receiving and support her while she had a multitude of difficult decisions to make.
My knowledge of Jessica’s background and complex family dynamics from our prior work together gave me a benchmark against which to assess the changes in her mood and outlook. As is common for people with a life-altering diagnosis, she became more intolerant of “wasting time” and pushed back against familial and cultural expectations for her to be compliant in her role as a daughter, woman, and patient. I supported her through all the phases of her treatment and then shortly thereafter found myself facing a similar diagnosis.
A Therapist's Cancer Experience Shapes Treatment
From a routine mammogram screening in December of 2022, I was diagnosed with breast cancer. This was terra unfamiliar for me, but fortunately my prognosis was excellent. I scheduled my surgery during the week between Christmas and New Year’s, a period I had already arranged to be off.
My original plan was not to tell my patients of my diagnosis, but after surgery it was determined I would need chemotherapy. Being immunocompromised, I would have to end in-person sessions, and anticipating a radical change in my own appearance, I decided to tell my patients about my cancer.
As I thought through my caseload, each patient brought different concerns to mind about how they would handle this news. Their concerns ranged from fear of losing me to death or retirement, or to the worry that their issues felt insignificant in comparison to my situation. I felt confident that I could work through the ups and downs with each patient.
Jessica was the patient I most dreaded telling. She would know from personal experience what I was facing, and I was concerned that my diagnosis would overwhelm her.
At the time of my diagnosis, she had just entered the maintenance part of her treatment. I wasn’t sure what would happen to the boundaries between us as my treatment began to replicate hers.
When Maggie told me about her diagnosis, I was shocked and sad. My heart sank thinking of her going through the gamut of appointments, ultimately robbing a year of her life. From what she shared, I understood from a high level what this meant logistically and what it could possibly mean physically, mentally, and emotionally as each cancer experience is so unique. I wasn't surprised Maggie would keep seeing patients during her treatment from what I knew of her, plus, it would help to keep life “normal.”
I was wrong to worry about sharing my diagnosis and treatment with Jessica. Our boundaries did shift, and the sessions changed but I believe in ways that were beneficial to both of us. Being open to receiving from her was the beginning of my learning. She began to recount her cancer treatments with more details than she previously had shared. And I had a context to understand her references which I lacked before my own treatment. There was a clear shift in our roles as she became the teacher, sharing her experience. Despite being almost twice her age, I found Jessica’s personal understanding of cancer treatment deeply affirming of my own experience. Remarkably she was the closest person in my life at the time with a similar diagnosis.
Our sessions fell into a pattern: during the first ten minutes or so of each Zoom session, she asked me how I was feeling and together we discussed the ins and outs of whatever point in treatment I was facing.
It was initially uncomfortable for me to have so much of the focus on me but with time I came to appreciate how helpful our sessions were for both of us. In contrast, I also had to process my feelings about patients who never asked how I was feeling or showed any interest in my well-being. I didn’t want to bring any more attention to myself than I already had by sharing my diagnosis, but each patient’s response to my diagnosis revealed something about them and our relationship.
As Jessica learned about my experience, she was prompted to address how she felt during her treatment.
I didn't want to be evasive, asking how Maggie was doing during our sessions. I was genuinely concerned and didn't want her to feel like she owed me more of an explanation because of a shared diagnosis. I'd cautiously ask questions, not wanting to overstep personal boundaries. During certain points of her treatment, I'd share some of my experiences with Maggie, with the hope that it would serve as a form of support, and she wouldn't feel alone. Cancer is so lonely. If I could offer Maggie even the slightest amount of comfort, it would be an honor and a gift to do so.
Before my last chemotherapy treatment, she warned me that I would have to “ring the bell,” a customary ritual at the end of chemotherapy. She knew me well enough to know this was not something I would welcome. She had never talked about this experience before, and it led to an exploration of her feelings about how powerless she felt as a patient to say, “No.”
Our increased understanding of each other helped me personally, but it also helped me be a better therapist for Jessica. The nuances of our work deepened as we grew closer and her voice continued to get stronger, to the point that I felt comfortable enough to ask her if she would like to participate in writing this essay. I trusted she would be able to give an honest answer.
A significant way our treatment protocols diverged was that I was offered cold capping with my chemotherapy treatments to help prevent hair loss. In the end my hair loss was negligible which was a huge relief to me. Jessica, by contrast, lost all her hair during chemotherapy; this loss prompted many sessions focused on her distrust of her body and her despair over her altered appearance.
By the time of my diagnosis, Jessica’s hair had grown back, not exactly as it had been before treatment but sufficiently that the change was not obvious to a casual observer.
As she witnessed my lack of hair loss, she spoke in greater detail about her own ordeal of losing her hair, being fitted for a wig, and the physical discomfort of her hair growing back. We talked about the financial burden of a cancer diagnosis and the lack of insurance coverage for “cosmetic” concerns such as hair loss. Our shared knowledge base deepened my ability to support her unresolved anger with the medical system. Her need to fight the insurance company for access to care is an ongoing source of stress for her.
Cold capping was presented as “nice to have” and questionably effective for my treatment plan. That, coupled with it not being covered by my insurance, was disappointing. I was surprised cold capping was presented as a positive option for Maggie and was intrigued what the results would be. I hoped the cold capping would work and she'd be spared the physical and mental trauma of losing her hair. I was thrilled the cold capping worked for Maggie and equally enraged this is not a standard part of every woman's treatment and insurance plan.
The difference in our age was most pronounced in discussions about long-term management of our cancer diagnosis. As a young woman, Jessica is facing far more extensive interventions and questions about how to stay cancer-free without compromising her health in other ways. As she continues to grow professionally, she also has to contend with issues related to maintaining her health insurance coverage. As someone on Medicare and nearing the end of my professional career, I have more autonomy in making decisions about my work-life balance.
Since resuming our work together, Jessica’s father has died and there have been other major transitions in her life. Separate from our shared experiences around cancer, we have done some important work about managing grief and setting limits with her family of origin. Even when we are not directly talking about her cancer, it is a reality that colors the conversation.
In a way, our shared cancer experience has allowed me to open up more to Maggie during our sessions. I've felt comfortable and trusted her throughout the years, but something has changed. I feel strongly this has been instrumental in working through the grief of losing my father.
There was something profoundly different in my work with Jessica since my cancer diagnosis from my work with any other patient. As I gain more distance from my cancer treatment, we have shifted away from the weekly check-ins. But she will always be at the forefront of my mind, and gratefully so, when I think about what it was like to continue to practice through my cancer diagnosis and treatment.
***
Allowing our patients to know us, let alone directly help us, is a controversial topic in the field of psychotherapy. But sometimes life intervenes, and we have to adapt. I am glad I continued to practice during my cancer treatment. As Jessica said (she also worked throughout her treatments), it helped keep a semblance of normalcy in my life while allowing me to feel like more than just a patient. And I move forward with confidence that I am a better therapist for her and other patients who might follow in our shared diagnosis.
Questions for Thought and Discussion
- How did the therapist's approach to her client resonate with you?
- What are the advantages and disadvantages of sharing such Personal, and in this case intimate, information with a client?
- If you have had a personal circumstance that converged with those of your client(s), how did you handle it?
Wrapped in Care: Narrative Therapy in the Time of COVID
Genealogical Narrative
“My Nana died from Covid. She died four months ago. I am still crying every day. I am not getting over it”.
That’s what the email said. That’s why Harper intended to meet with me. As a therapist I work for various organizations, and Harper’s employer, an Australian-New Zealand company, was one of them.
I don’t like Zoom at the best of times. To me, with my head-and-shoulders only view she looked a small, perhaps even plump young woman, her face rounded like an apple. It was only months later when I met Harper in person that I realized that the 5-foot-3 inches was in my imagination. Harper’s face might be apple-y, but her stature was more that of a Kauri tree: She was tall, solid. She was dressed in Nike, growing towards the light.
Usually, I will begin by enquiring into a person’s virtues and I will ask for stories to illuminate them. So often, problems obscure from the person themselves the very attributes of their character which will be of most help to them in adversity. The problem weighs in on the person, forcing them to see only their troubles and rubbing their noses in inadequacy. But Harper was alone. Usually, I will ask others to speak for the person because it is so hard for them to do so themselves. For Maori, this is likely to be even harder because to speak about oneself, especially with pride, can be inappropriate when the sense of self is primarily a collective one (1). This whakatauki (Maori proverb), speaks to this cultural tenet: “Kaore te kumara e korero mo tana ake reka”, (translated as: “The kumara –sweet potato– does not speak of its own sweetness.”)
However, Maori see themselves in terms of their whakapapa, described by Te Rito as “a genealogical narrative, a story told layer upon layer, ancestor upon ancestor, up to the present day. There are parallel lineages of characters which run vertically side by side, era by era, and incident by incident.” (2) To enquire about Harper’s identity in terms of the genealogy of her character would be to enquire after her whakapapa, to site her character within her lineage. As Swann says, “whakapapa narratives also provide the individual and cultural context from which meaning-making, connection, and shaping of identity emerge.” (3)
Family Separation During Covid
Sometimes I will interview people about their virtues even if they are on their own. I might ask them to imagine what someone close to them might say. I might have consulted with Harper, whether this would have been something she would like to consider within the context of her whakapapa, had her grief and love for her Nana not filled the screen.
Instead, I encouraged Harper her to speak of her Nana and what she meant to her, and how they had been separated by distance, then by Covid, then by death.
I intuited that Harper’s relationship with her would offer us our way through our therapy conversations. Knowing that for Maori, our ancestors are with us in the here and now, that they “go with us” (4), I asked her to tell me about her Nana: “Harper, would you be willing to introduce me to your Nana? Would you be willing to tell me a little about her and her life?”
Harper’s hand went to her heart. “Yes, I’d love to. Nana was born in the Hokianga.” She sat up straight in her chair. “She was Ngapuhi [a large New Zealand social unit] and full Maori. She had it hard because Grandad had an affair and left her with seven kids. My dad was the second eldest, and the oldest boy.”
“And what is it that most stands out to you about who she was, Harper?”
Harper looked upwards, as if consulting the heavens. “Even though she worked three jobs and had all of those seven tamariki [children] to care for, she always helped others.”
She went on to tell me her Nana had had the misfortune to be admitted to hospital in Wellington after a fall. Then diagnosed with Covid- 19, she found herself cared for by strangers as the rest of her devoted whanau [extended family] waited in lockdown. They were only 4 kilometres away, but heart-breakingly, hopelessly distant.
Harper was unable to see “the most beautiful woman alive,” whom she had visited every day of her 23 years. She had moved away to Australia only six weeks before Covid burst forth on to the world. She was stranded by love, lured by a new relationship with Arthur, which had begun online. Messaging had turned into long emails, which had turned into daily Zoom calls. Harper and Arthur soon realized that they had to meet and see if their online romance would flourish in the ‘real’ world.
Their first meeting in person was at Sydney airport. She saw Arthur before he saw her, waiting, hands in pockets, fretted brow, chewing a strand of silky black hair to soothe his nervous heart. In that moment, 2D became 3D, pixels became flesh, their love jumped from the screen into the arrival lounge. Arthur’s life had been wall to wall with challenge and worry, but his budding relationship with Harper had kept him afloat. Arthur’s father was waiting for a surgical triple bypass. The mother of his 18-month-old son had departed with her boss for the Gold Coast six months before, and his mother had died of cancer two years earlier. Harper knew he was barely hanging on, so she stayed. Just like her Nana would have done.
Harper told me of the trials living with Arthurs’s family, how she felt both “homesick, and not at home when I am at home,” her outrage at Arthurs’ siblings, and even Arthur himself, for indulging “a complaining old man'' who continued to mete out nastiness to all of them, whilst they bowed under the sway of his illness. Nothing new to this family, just a new reason. But in the background hummed the tune of a granddaughter's love for her Nana whom she would never set eyes on again. Love was the bass line, even if grief for her Nana had become a superimposed, unwelcome harmony.
She told me of her premonition the week before the world closed its doors and its airport runways:
“I wanted to go home to my Nana. I asked myself, ‘what if I can’t say goodbye?’ I wondered if I would ever forgive myself if I chose to be here, over the ditch in Australia, with a family that doesn't build me up. Then I got the call from Dad. Nana had tested positive. I just knew. None of us got to say goodbye. We had a full whanau Zoom. She was so happy. Then she rolled over and died. We think she did it then on purpose.
My auntie had a korowai [Maori cloak made of wax and bird feathers through the art of finger weft-twining] made by a woman near Rawene. It was arranged five minutes after she passed. We wanted to have the cloak on her so that she felt that we were with her as she began to leave her body, and to leave us. Afterwards the cloak had to go into quarantine. I watched the tangi [short for tangihanga, Maori for funeral] on livestream. How weird is that? The last thing I saw was my family hugging her. Of course, only 10 of them could go because of the Level 3 Covid restrictions. All I could think was ‘why am I here in Sydney?’ I turned off the livestream and just sat there thinking ‘now what am I meant to do?’ Nothing felt real. The grief didn’t feel real. I was on my own staring at a blank screen. All because someone gave her Covid. Covid robbed me of my Nana.”
Grief and love mixed with outrage at the injustice of it all. The injustice of losing “the most beautiful woman alive” to Covid, the injustice of not being able to say goodbye. The injustice of being away from her wh?nau, her friends. The injustice of having to “zip her lip” at the behaviour of this sullen old man, and the equally nauseating behaviour of a family afraid to name what they see, as so many families do.
Harper had said “unjust” several times. I thought to ask her, “Harper, if you feel you have suffered such injustice, would you say that you are someone who believes in justice for yourself, and also for others?”
A Client Takes the Side of Love
“I am about justice. I speak out. I cannot stand things being swept under the carpet.”
How I wondered had Harper become an “all about justice” young wahine [woman/female]? It is all too easy to take such insight into a person’s character at face value: to assume that this is just ‘who they are.’ But virtues have stories. Perhaps some of it is genetic, but the choice to act on values is embedded in familial and wider culture, and in my experience have a story behind them if I am prepared to search hard enough with people. The story may have begun with the person, or it may have begun generations ago. A person’s virtues are rarely intrinsic to them.
The cult of the individual blinds us to the context in which personal virtues and values are handed down to us. And more than that, there are ancestral stories, which for Maori, trace whakapapa. As Love says: “A view of individual selfhood is indivisible from the whanau (hapu and iwi) unit, including the temporal and spiritual constituents of these. The boundaries of the self were drawn around the whanau, hapu and Iwi, unit, ancestors and the natural and supernatural world (5). Te Rito writes about his experience of researching the importance of tracing his own ancestry as he went about his academic research into the importance of whakapapa for identity. He writes: “…it has helped ground myself firmly in place and time. It connects me to my past and to my present. Such outcomes certainly confirm identity and a deep sense of ‘being’” (2). I was thinking of Harper’s whakapapa when I asked, “Harper, how do you guess that you have become someone who “is about justice, who speaks out, and won’t tolerate things being swept under the carpet?”
“It’s to do with my dad and how he has treated my mum all my life. I won’t stand for it.”
“How is it that your dad has treated your mum, Harper, and how have you gone about standing up to your dad’s treatment of her?” (6) Her presence on the screen seemed to become larger as she said, “My father is a strong, proud, Maori man. He thinks that he doesn’t need to justify anything. Mum said he acts that way because this is how he acts. That is how proud Maori men are. Dad has never been abusive, but he does shut Mum down.”
“Does your commitment to speaking out against injustice extend to others beyond your whanau, Harper?” [a question asked to help Harper story her identity].
“I confront my dad, and I confront others, but it’s hard doing this for everyone else.”
It wasn’t just Harper’s love for her Nana that shone from the screen; it was her willingness to speak out on love’s behalf: “Is speaking out one of the ways that you show your love for people,” I asked her?
Harper stopped as if putting her foot to the floor at speed.
“Yes, I speak out because I do love people. I don’t want people to feel hurt.” Looking down, she changed gear: “I try to fix things for others, and for myself. Death hurts, but I can’t fix it.”
We sat in silence for a moment or two.
“Harper, is this what your Nana did? Did she fix things for others?”
The words that followed sounded were like the final knell of a church bell:
“My Nana used to say, ‘while we are living, we have the chance to turn things around.’” Her voice softened as she confessed: “I don’t respect my dad because of how he is but I do want a better relationship with him. He was always physically present, but he wasn’t there for me emotionally. I have told him that I want him to be in contact with me more often”.
“Harper, are you trying to turn your relationship with your dad around just as your Nana would have done?” [an attempt at storying to bring Harper closer to her Nana]
Her closed hand came to rest on her lips. “I realized that I wouldn’t be okay if my dad were to die, and we were not okay. I told him, ‘I recognise that you have your own way of showing your love to me.’ He was shocked. He just said, ‘I try to make sure that you come along with me to the rugby club, but you just don’t want to come.’”
Father-daughter love had been conflated with going to the rugby club. I felt for her even though I realized that this was a father who loved his daughter and was expressing it in the best way he knew how at that time. However, I marvelled that this 23-year-old, aggrieved by her father’s treatment of her mother, was willing to take the side of love [formulating a counter-story].
“Harper, even though you say that you do not respect your father because of the way in which he has treated your mother, why is it that knowing him as you do, you reached out your arms in love to him, even if it seems as if he has kept his by his side?” [inviting Harper to look beneath her father’s actions to find intentions].
“It’s Nana, through and through. She never took sides. I spent a lot of time with her growing up. Dad always used to take me and my brothers to her. It is one of the best things that Dad ever did for me.”
My ears pricked. “Did your Nana teach you how to take the side of love?'' I asked her.
She reached for a tissue as tears began to swell.
“Could you tell me a story which would help me to understand how it is that your Nana taught you to take the side of love rather than to take sides?” [an attempt to connect Harper to her Nana through a powerful story]
“I would get sent there to her place as punishment when I was in trouble. She would sit me down at her kitchen table and tell me stories about her life and the hardships she suffered like ‘having to walk for 8 kilometres to school every day after milking the cows and tending to the farm.’ The stories made me realize how I might have overreacted at home, or why my parents did what they did. There were always lessons in her stories, and it always came back to ‘do you know your parents love you? There is a reason why your parents do what they do.’ I was so wrapped up in her care that I didn’t hear it as a lecture.”
“Harper, would you say that your Nana taught you to take the side of your parents' love for you, no matter what, and did so in such a loving way that you were able to hear her?”
“Yes. I know she sympathised, but she never said anything against them. She always directed everything back to their love for me.”
“Has your Nana taking the side of love rather than your side or your parent’s side inspired you to continue to believe in your father’s love and to continue to reach out to him, even if at times you do not experience that love in return?” [weaving the story of her Nana’s love across generations]
“100 percent,” she affirmed.
“And are there any other ways in which your Nana has taught you to love? [making her story about choosing the path of love more substantial]. For instance, you chose to leave your whanau, to move overseas when you had never even been out of Auckland before to be with a partner with a baby son and a sick father. And you told me earlier that your Nana was always there for others even although she was a single parent with seven children to care for and worked three jobs. Did your Nana hand down to you your generosity to others? [moving the story of commitment to love into the present].
“I’d like to think so. Her love was like this river that flowed to everyone in her path. And her love ran through me too. She was me and I was her. Or that is how it always felt to me?” [weaving the story of love into a river with tributaries to others].
All too aware that guilt was likely to be troubling Harper because she had made choices for her own life that took her from her Nana not long before she fell sick, I asked her, “even although you were so far away from your Nana, how did you make sure that your Nana felt your love for her through her illness?”
“I spoke to her every day on the phone and on Zoom, so she did get to see and to hear me morning and night. I formed a relationship with her head nurse. I remember one day hearing singing as I was joining her online. It was the nurses. They had written out Maori songs and they sang them to her, and they weren’t even Maori. They worked out our family tree and knew who each of us was. It nearly broke my heart when I realized that they had done all of this for my Nana and for us.”
I was suspicious that there was more to this than met the eye. Not every team of nurses would find Maori songs and sing them to a patient, especially if they weren't Maori themselves, and especially during lockdown in a pandemic. Was it Harper and her love for her Nana that had inspired them? “Harper, would you agree that what the nurses did was pretty unusual? Do you think that they also felt your love for your Nana and your Nana’s love for others and got pulled into the river of her love as well?”
“They certainly felt my love for her, and I guess no one escaped her love, even when she was in hospital. I have always believed that I was her favorite, and maybe they realized that,” she bubbled. She looked up wistfully, and said, “although the dementia took part of her away, her wairua [spirit or soul] remained just as it had always been. They must have felt her wairua.” We sat for a few moments in what felt to me to be reverence. Then her brow furrowed. She told me that she had been feeling overcome with anger since she had had a phone call from her auntie.
“I have this righteous anger. My auntie said she heard a rumor that it was a nurse who was sick and didn’t go for a test. Someone made a choice and brought the virus in and caused her death. I keep asking myself ‘what is going to be done about that?’ Then, I was sitting in the walk-in-wardrobe in our bedroom, which is where I go when I need time out, and I heard her voice saying: ‘you are not me.’ I didn’t feel belittled at all.”
“Why not, Harper? What was it that you heard in your Nana’s words that was not a criticism, not belittling in any way?” [a ‘close’ question, designed to help Harper stay close to her Nana].
“I knew what she meant because she told me this many times. She was letting me know that it was not up to me to seek justice, that I didn’t need to replace her, and it was okay to be angry even although she would feel differently. Sitting there on my bed, I realized that she was giving me permission to be myself, just like she always did. I sat there for a bit and then I realized that I do want to be like her. I so respected my Nana. I can be like her and be me. Then, for some reason I turned on the TV, and on the news, there was a clip of Jacinda [New Zealand Prime Minister at the time] speaking about the New Zealand response to Covid. I felt for her. She has had so much flack. And although what she has done was not successful for my Nana, there could have been thousands more deaths. As I watched her, I felt my Nana’s presence.”
“What was it about Jacinda that felt so much like your Nana, Harper?” She looked up as if taking herself back to the moment.
“My Nana’s strength came from her love of people and that is how Jacinda is for me.”
I was surprised to hear what she said next. It is one thing to feel a connection, another to act. I wondered whether her Nana was also a woman who acted when she felt strongly, and especially if motivated by contributing to another. It certainly seemed so.
“I decided to write to Jacinda. I told her about my Nana. I told her about how I believed she loved people in the same way. I told her I didn’t blame her. I didn’t need a reply, and I didn’t expect one, so I was so surprised when one came. She said that she was ‘moved to tears by my letter’ and that ‘she was proud to be compared to my Nana.’”
A calm had descended. It is strange that even though we were thousands of miles away from one another I felt it palpably, as if we were in the same room. I also felt as if Harper’s Nana was with us. Perhaps she was in the spirit of the way in which she lived: in service of her love for others. Enamored with the idea that our lives are all ‘peopled’ at all times with those that have gone before us’ (4), I felt the urge to include Harper’s Nana in our conversation, and asked a question that I might often ask when I felt that a loved one, no longer present in their physical body, might be knocking on the door, waiting to be asked to contribute:
“Harper, if your Nana was looking down on us right now, and felt your love for her, what do you think she might say?” [a question borrowed from David Epston].
Harper’s eyes widened. She looked up and away, and then answered as if my question was one that she was asked everyday: “She would say, remember that Jacinda is healing her whanau too.”
Harper’s Nana had been the matriarch of her whanau, its spiritual leader, its healer. Harper was her most beloved grandchild. I had the sense that Harper’s Nana may also have seen in Harper her spiritual successor. This sense, along with the Maori belief that our ancestors walk with us, led me to ask, “Harper, would you say that your Nana has passed on her ability to love people to you?” [a question asked to bring Harper closer to her grief]. The absence of hesitation gave me her answer before I heard her reply:
“Yes. My uncle says ‘you have so much of her spirit and essence,’ and I feel closer to her when I talk to you.’”
“And Harper, you said that your Nana found her strength in her love of people. Would you say that you do and will find your strength through your love of people as well?”
Harper blinked away a tear. Our first meeting had come to an end. We held on for a few moments, and then we both reluctantly pressed ‘leave meeting’.
Whilst We Are Living…
Harper’s face popped onto the screen. She mouthed something but the caption told me that her microphone was still connecting. Harper wanted to tell me about the memorial she and her whanau had been planning for her Nana. She had put together a slideshow of photographs from her Nana’s life. The bubbliness which had shimmered on the screen in those first few moments burst, as she told me that the purposefulness of her slideshow-mission had given way the moment she had finished it.
“I just cried. It was the first time that it came home to me that she was really gone. Until that moment, her loss had not fully made its way to her heart. It is so hard to accept that ‘that is that.”
An emptiness sat between us, and then, like a visitor who senses the awkwardness of the moment and attempts to fill it, a suggestion intruded.
Harper said, “I want to write a speech for the memorial.”
What could be wrong with this suggestion? Nothing. Of course, she would wish to speak of her Nana at the memorial. Yet it seemed that at this moment the suggestion was here to fill the pain. I felt the emptiness. Harper had been ripped away from her Nana by distance as well as by death. How might I help to bring her closer to her Nana, even in some small way? How might I help to salve the pain of this chasm even mildly so? The words materialised in the air between us before my reasoning had taken full shape:
“Harper, would you consider writing a letter to your Nana rather than writing a speech about her? What if you were to read it to her at the memorial?”
Harper’s hand fled to her heart and sat there like a nesting bird.
“Ohh,” she exclaimed.
There was a moment of silence, and then she said:
“Judging how my heart feels about the idea…”
“And what might you say?” I asked. Harper’s reply delighted me.
“I have no regrets with Nana. She knew how much I loved her. I would like to talk with her about some of the good times, some of the funny times we had together, especially towards the end. I’ll think about what people want to know about her, and what I want them to see about our relationship.”
As a narrative therapist I cannot ever pass up the chance of a story, so, I asked her, “Could you tell me a story about one of those funny times that you shared with your Nana?”
Harper’s eyes danced as she told me about how she had to “keep seeing her through dementia…I had to find a new way of seeing that spark in her so that I could see a bit of her, even for a moment. She loved the Silver Ferns [New Zealand’s national netball team] and she was always very proud of me when I played netball for my school team. One day, I told her that I had been picked to play for the Ferns. It wasn’t true, of course. I said ‘Nana, guess what? I’ve been picked to play for the Silver Ferns.’ She exploded with joy and pride. ‘Really?’ she said. ‘Yes, really,’ I said. ‘What position?’ she asked. I said, ‘Goal Attack.’ That was that I used to play. I was so surprised when ten minutes later she remembered my fake Silver Ferns selection, and asked me again, ‘what position are you playing?’
We laughed together. I was touched to be privy to this moment in Harper’s relationship with her Nana. “Harper, I would love to see your letter to your Nana after the memorial. Would that be okay?”
“Of course,” she said. “When I have finished reading my letter to her, I will blow out the candle that will be lit for her. This signifies that we will be going on without her, but it doesn’t mean that the light needs to go out ‘in here,’” she said, as she laid her hand across her heart.
Another idea crossed my mind: “Harper, do you think you should wear the korowai?” [this gesture would suggest that Harper might take her Nana’s place as the family’s spiritual leader]. She replied with a solemnity worthy of the feathered cloak itself, yet without the expectation that she deserved it.
“Maybe I could ask my uncle. He is the keeper,” she mused, “I would like her to be with me as I read to her. I would be wrapped in the korowai, and it was the last thing that she was wrapped in.”
Harper’s gaze drifted somewhere off-screen. A moment passed until her gaze returned. She looked troubled. I waited for her to speak, aware that there was something in the wind that was about to change the direction of our conversation.
Christmas, weddings, births, deaths. All events that bring family together. And with the togetherness come the ghosts. The ghosts of all that has been said, the ghosts of all that has not been said. The ghosts of resentments, the ghosts which carry secrets under their grey gowns. There had been “a lot of family drama around the memorial,” and the winds of these dramas blowing through the whanau had disturbed her and had been “piled on top of her my grief,” making it hard to feel, hard to find her Nana. Harper wanted to talk with me about how she might navigate her way through this.
I knew I would need to understand what was coming to the surface in some detail, and so I asked Harper if she would “tell me the story of these whanau dramas?” A fifty-year saga of ‘black sheep’, drugs, prison, dodgy dealings, cheating, and financial losses at one another’s hands took shape before me. However, the rift that had split the whanau into two very unequal halves, with one of Harper’s dad’s cousins and her brood on the one side, and most of the rest of the family on the other, with a few undecideds wandering around in the middle, had led to a nasty physical fight in which a younger male cousin had been seriously hurt. An allegation had been laid against Harper’s father by Doreen, the young man’s sister. Harper had first heard the rumor a few years before. She had never met her father’s cousin, Doreen, who had been faded out of the family, partly because of the rumors, and perhaps partly because of her “troubles with drink,” but somehow word had gotten around as it always does. In the spirit of her commitment to ‘speaking out’ and ‘standing up for others,’ which Harper had been practicing in her father’s company for some time, she had confronted him:
“My dad was so angry, and he refused to answer. He just said that you don’t need to know.”
Then one day not long before Harpers’ Nana became ill, Doreen rampaged on Facebook. Messages were sent to random family members, including Harper. Terms like “swept under the rug” were used, and “stuff was said about my mum”. Harper had replied saying:
“It’s not my business, don’t talk to me about it,”
and Doreen had replied with,
“Do you condone physical abuse and violence?”
Harper had blocked her.
And then when Nana became ill, Doreen had made an appearance in person. Harper’s uncle had spoken with her and apologized for her treatment over the years. The views of the other aunts and uncles were that “she needs to get over it.”
Doreen was refusing to come to the memorial because the family had been unwilling to involve her. But she had been close to Nana. Nana had been as important to Doreen in her early years as she had been to Harper. Harper's troubles we
How to Help Clients Change the Narrative of Aging
'I want to tell people approaching and perhaps fearing age that it is a time of discovery. If they say – ‘Of what?’ I can only answer, ‘We must each find out for ourselves, otherwise it won’t be discovery.’
(Florida Scott-Maxwell, The Measure of My Days)
Psychotherapy and Ministry: Trafficking in Metaphor
Who doesn’t relish the odd adventure to spice life up, be it bungee jumping, looking for love online, or watching a thriller on TV? Major or minor, firsthand or vicarious, adventures are essential, it’s been said, to a robust sense of self.
But might aging itself be an adventure?! The very idea seems a contradiction in terms. Before I propose that it isn’t, let me make a confession.
Prior to becoming a gerontologist, I was a protestant minister. In that capacity, I did my fair share of counseling, seat-of-the-pants though my listening skills were, but I’m no psychotherapist. What follows, then, are thoughts from the sidelines alone and should be taken, if not with a grain of salt, then with this admission in mind.
My sense, though, is that the two fields, therapy and ministry, share a key thing in common. They both traffic in metaphor; by which I mean, for instance, that there is always the possibility for a chance turn of phrase leading to an image that can be enlisted to help someone gain insight into their situation and move forward with their lives.
Given the profile of the average congregation, those I dealt with were mostly older adults. This might well have turned me off, as it can some psychotherapists — the feeling being that they are simply too old, and their problems too entrenched to benefit from counselling of any sort. However, I had no choice. They were “my people” and it was my job to get to know them. What I realized, though, was that they were often the most fascinating to work with.
Compared to my younger parishioners, these older adults had richer stories to listen to and learn from. And in attending to them as closely as I could, less as a professional, really, than as a friend, I felt that I was providing them with something that was implicitly healing. I call it “narrative care,” a concept that takes in everything from full-on psychoanalysis to soulful conversation. And because they had that many more memories under their belts, they had that much more inner material on which an aptly deployed metaphor that emerged amid our exchanges might work its magic, enticing them to re-story a little their way of looking at life. The metaphor of aging as adventure, I suggest, can do just that.
Growing Old: A New Narrative About Aging
Since switching from ministry to gerontology, my appreciation for the role of metaphor in both language and life has only intensified. The best example is my 30-year interest in the metaphor of “life-as-story," or what Ted Sarbin calls the “root metaphor” of narrative. This led me into a sub-field known as narrative gerontology.
Drawing on insights from narrative psychology, Narrative Therapy, and (in my own case) narrative theology, narrative gerontology focuses on the biographical dimensions of aging as opposed, say, to its biological ones, dimensions to which gerontologists, certainly geriatricians, devote a disproportionate attention. It focuses on how human beings are hermeneutical beings — makers of meaning — and how our main means of doing so is by making up stories, big or small, about events, the world, and ourselves. And it focuses on how our self-stories, these meandering works of imaginative non-fiction, these myths by which we understand ourselves, change over time, and the effects of that change, for better or worse, on our overall well-being. It looks, too, at the storyline we subscribe to about aging per se.
Whereas gerontology remains dominated by a biomedical paradigm, which, with the best of intentions, pathologizes aging as a problem to be treated with all the anti-aging strategies we can muster, narrative gerontology represents a different starting point for exploring the complexities of later life.
Rather than defaulting to a storyline of aging as a downward drift to decrepitude and death, as an intrinsically tragic trajectory or “narrative of decline” (which older adults can unwittingly internalize, as can therapists too), narrative gerontology looks at aging through the lens of a more optimistic narrative, a better story. It views aging as a matter of growing old, potentially, and not simply getting old. It views aging as a way to the light and not the darkness alone, as a narrative not merely of decline but of discovery, of adventure.
Depression, Decline and Narrative Foreclosure
Before proceeding, let’s consider the narrative challenges that older people often confront. These can underlie and, if unaddressed, exacerbate the many other challenges that later life brings. Since I’ve written elsewhere on these challenges — which go by labels like narrative loneliness, narrative loss, narrative dispossession, and narrative imprisonment — I won’t go into them here except for one that deserves singling out. It is narrative foreclosure.
Narrative foreclosure is the premature conviction that our story has effectively ended, that no new chapters are apt to open up, no new characters or themes will thicken the plot and take it in fresh directions. While our life itself — talking, eating, going here, going there — continues apace, our “story” of it is over. Granted, narrative foreclosure can befall us at any age.
When you’re 20 and your lover bids goodbye, you can suffer an acute case of it, and hurling yourself into the river seems a reasonable course of action. Why go on? The story of you riding off into the sunset together and living happily ever after will not come true! But later life, I fear, renders us unduly vulnerable to this condition, and thus the depression we may be diagnosed with and the pills we’re prescribed, when a dose of narrative care might work equally well to re-open our story. Here’s how it happens…
We retire from the career that defined our identity and our self-story loses a vital source of support. Our children get work in other parts of the country, taking our grandchildren with them, and our story-world shrinks still more. Our life partner departs this life and with them goes our raison d’etre. Our vision and hearing, mobility and autonomy grow more limited until we’re relocated to a nursing home where our world is reduced to whatever we can squeeze into one little room.
Though our life itself keeps plodding along, “the story” is all but over. Intensifying our sense of loss is, of course, the narrative of decline that permeates our culture and quietly penetrates our hearts. But, real as the decline surely is, it’s not the only narrative in town. Our stories aren’t stuck in stone, in other words. We get to choose the ones by which we live and age.
Alternative Narratives of Later Life
In The Wounded Storyteller, sociologist Arthur Frank reflects on his time as a cancer patient and identifies three broad storylines by which people facing such conditions can make sense of their experience. First is the restitution narrative, where you reason “this too shall pass; I’ll be back to normal in no time.” Second is the chaos narrative, when the doctor says the tumor is inoperable and you have mere months to live, and the story of your life is thrown into a state of foreclosure from which you might never recover. Third is the quest narrative, where you interpret your illness, however serious, as — at the bottom — an opportunity to learn and an invitation to live life on a deeper level.
I’d like to build on Frank’s typology and propose that aging itself (often implicitly perceived as “a sickness unto death”) can be experienced in these three same ways. The restitution narrative goes like this: “If only I exercise more, do more puzzles, and drink less liquor, I will extend my life … indefinitely.” Such a storyline feeds emphasis on “successful aging” or “healthy aging” that are regularly promoted and obviously have their place.
Then there is the chaos narrative: “I’m old; I can no longer do X, Y, and Z, so my life is basically over.” This narrative can fuel the depression, if not despair, to which many older adults — especially men perhaps — may succumb. It's a recipe for narrative foreclosure.
Third is the quest narrative. “True, I can no longer do X, Y, and Z, but, as frustrating as it is, this is just one more chapter in my story. And there’s something to be learned in it, things to see that I couldn’t see before. This is new territory with new horizons to approach.” I see this narrative as underlying the positivity which, however “wounded” they might be otherwise, many older adults exude, despite (often because of) the troubles they’ve seen. It’s as if — as Wise Elders, perhaps? — they’ve taken those troubles and fashioned them into a good strong story: a narrative of adventure even…
Near Death Experiences and New Adventures in Aging
Aging as adventure — while not the whole story, I believe, warrants consideration. In fact, I’ve spent the past two years doing precisely that, reading and scribbling to where I have over 250 pages of single-spaced, typewritten notes that I hope someday to work into a book.
At present, these are grouped around four broad directions that I see the adventure leading: outward, inward, backward, and forward.
I’ve been toying with aging as adventure downward and upward too, but I’ll sketch just these four here. I see them, though, as tightly entwined. Movement in one direction is eventually movement in another. Also, movement in certain directions may come more naturally for some, with certain personality traits (like “openness to experience”) than for others. But I’ll leave such permutations and combinations for future reflection.
Outward and Inward
Depending clearly on our income and our health, aging can usher us into a phase of life where we’re open to fresh endeavours. This can mean, upon retirement for instance, if not bungee jumping, then learning a new language, or taking up the piano, or trying our hand at painting, or going on that long-dreamed-of cruise, and generally cruising outside our comfort zone. In the process, we may become acquainted with sides of ourselves that we barely knew existed, thus thickening the plot of our lives in ways not feasible when raising our families and keeping the wolf from the door — whatever form or forms that wolf takes.
Every person has their own unique kind of wolf and/or wolves. With each such venture, we open new subplots, welcome new characters, weave new themes into the stories we are. Our horizons keep widening, including our horizon of self-awareness.
Concerning the adventure inward, we have more time (if not inclination) to tackle what’s been dubbed the “philosophic homework” of later life, something that may be neither easy to do nor appreciated by those around us. Sooner or later, though, it is our duty, Jung insisted, to turn inward. The longest journey, the saying goes, is the journey inward. Longest, often loneliest, but perhaps also most pressing, and sooner or later, it has us looking back.
Backward and Forward
The adventure inward leads to the adventure backward. It leads to an examination of our past, or at least the stories in which we’ve enshrined it. It leads to life review, which for Erikson is a core developmental task of later life, and a very narrative one at that. I call it “the autobiographical adventure.”
This adventure — fraught, like any undertaking worthy of the word, with both revelation and risk, promise and peril — can come to us naturally, of course, insofar as time-past becomes more compelling for us to contemplate than time-future. But it may be prompted, too, by changes in our brains themselves, improved cooperation, for instance, between left and right hemispheres, plus increased openness to paradox and contradiction, to uncertainty, ambiguity, and metaphor — all of which, it’s argued, heightens the autobiographical drive.
Going with that drive and accompanied by a skilled listener, gazing back across the years, there are discoveries to make, patterns to discern, secret corners (not always cozy) to investigate, issues around trauma or abuse, legacy or grief to be acknowledged, and overall, pieces of the puzzle, positive or negative, to try and fit together. As we ponder “the mystery in my story,” to quote a former student, we may well find that we’d gotten the story wrong, that the past wasn’t as horrible as we’d assumed.
The adventure forward, however, could seem the most controversial, and cruelest, to consider. In what universe does aging as an adventure forward even make sense!? We’re born, we suffer, we die. End of story. What is there to look forward to?!
To speak of the adventure forward requires looking at the links between aging and spirituality. A few years ago, I did so in a public lecture in which, intrigued by literary scholars’ insights into the problematic nature of “endings” in narrative generally, and by research into Near-Death Experiences (NDEs), I mused on the process of aging as a near-ing death experience. As such, it possesses several of the transformative elements that NDE’rs routinely report.
Besides the panoramic life review that the experience commonly entails, these include a decreased attachment to material possessions, a deepened appreciation for the preciousness of life, a sense that this world is not finally our home, and a major reduction in our fear of death. Death is viewed as transition, not termination, as a horizon beyond which we can’t yet see, a doorway to an even greater adventure maybe; the very sort of view which, in one form or other, the world’s great spiritual traditions have long espoused.
More recently, I’ve been reflecting on aging as a process of going slower, deeper, and wider into the landscape of later life. By “wider,” I mean a broader horizon of understanding — a bigger story — that moves aging out of a biomedical worldview and situates it amid the multi-dimensional mysteries of the cosmos itself.
Narrative psychologist Mark Freeman, writes openly, for instance, about “the transcendent horizon of the life story,” a theme which, despite gerontology’s reluctance to broach it, theorists of “gerotranscendence” and “transpersonal gerontology” are more than open to entertaining. It is one, certainly, that author Florida Scott-Maxwell alludes to when, writing in her 80s, she asks rhetorically, “Is life a pregnancy?” To which she answers, “That would make death a birth.” And it is one which scientist-mystic, Teilhard de Chardin, hints at with his cryptic phrase, “the hidden mystery in the womb of death.”
If such language has any merit beyond that of fanciful phrasing or wishful thinking, then it points, I think, to the need for a significant reconfiguration — a major re-genre-ation, if you will — of what aging is ultimately about. A shift, in short, from tragedy to adventure.
Helping Older Clients Shift Their Narratives
These are early days in what, itself, is proving to be a vast adventure: an adventure of ideas. Who knows where it will lead me? I’m certainly uncovering many questions in my quest.
For instance, how to enlist the adventure metaphor in a group setting versus one-on-one, or with the deeply depressed, or those at death’s door? And where on earth is the “adventure” in dementia?! So, my efforts might well turn out to be a wild goose chase. We’ll see.
Is this not, though, the mark of a bona fide adventure? We set out with no exact knowledge of where we’ll end up. Amidst the twists and turns, setbacks and surprises that are invariably involved, we don’t know — can’t know — how things will turn out. Yet we press on all the same, with curiosity and courage, humility and hope … and hopefully a bit of wonder too.
Naturally, the metaphor of aging as adventure will not be everyone’s cup of tea, nor every clinician’s either. But as agents of restorying in your older clients’ lives, as story companions walking beside them for a while, whether you buy into it yourself, you might find them open to giving it a try. And why not? If it nudges them toward a more inviting myth by which to live and age, then what’s there to lose?
Questions for Reflection and Discussion
How does the author’s notion of the narrative of aging impact you?
How might his ideas help you in your work with elderly clients?
How does your own relationship with aging impact your clinical work with the elderly? The dying?
What countertransference experiences have you had with clients who are dealing with aging, mortality, and dying?
* Editor’s Note: While he is not a therapist, I asked Dr. Randall to write this essay with you (the therapist, the clinical supervisor, the trainee) in mind.
Psychotherapy with a WW II Survivor: Bearing Grief with Grace
An Incalculable Loss
Sakura was born in 1931, in the Japanese city of Nagasaki, a major port city and center for shipbuilding. She enjoyed a pleasant childhood with many friends and family. The early years of her adolescence were overshadowed, though, by the increasingly grim circumstances of her country being at war.
On August 9, 1945, the day seemed ordinary for the 14-year-old Sakura, until in a flash, nothing ordinary remained, after an atomic bomb was dropped on her city by the U.S. Upwards of 80,000 people were killed directly, and many more later. Nagasaki was attacked, in part, for its role in shipbuilding.
I felt a cold chill of fear the first time Sakura told me about having survived that unspeakably horrific event and its devastating, life-altering aftermath. I felt ashamed that she had suffered indescribable losses, and that my country had made that assault on her home city.
The Shadow of Grief
Sakura was in her late 80s and lived in a nursing facility where I was working. She always smiled, was impeccably dressed, and stayed active socially, having many friends among the other residents and the staff with whom she joined in on the many group activities. She was referred to me for psychotherapy, and although she had not been formally diagnosed with depression, she suffered depressive reactions during anniversaries associated with her losses.Working with Sakura, I had assumed that she might feel great anger towards America and Americans. My assumptions were upended when Sakura shared that she had married an American soldier several years after the end of the war, that she had lived in America, raised her children and grandchildren here, and had enjoyed a mostly happy life. Sakura deeply grieved over the death of her beloved husband a few years earlier.
Sakura’s remarks about Nagasaki were always brief, factual, and matter-of-fact. I never heard her verbalize blame or vent feelings of anger, and I never saw her publicly display her most deep and personal (painful) emotions. Sakura would discreetly weep as she spoke of the sad events in her life during our private therapeutic conversations. On the occasions of major anniversaries, she would spend the day fully dressed while lying still and sad and silent on her bed. Thus, on August 6th, the anniversary of the atomic bomb attack on Hiroshima, on August 9th, the anniversary of the attack on Nagasaki, and on the anniversary of the death of her husband, she did not speak and would barely eat or move. Yet, she would be up and smiling and greeting others the following day. Those were the days she set aside for her most public showings of grief and perhaps even protest, although neither were likely her intent.
There were so many things I wanted to know about her wartime and life experiences, but I curbed my curiosity and attended to her choices of what to reveal or not. The importance of her dignity outweighed my inquisitiveness. I work with many persons who have been deeply traumatized, and for some, a probing therapeutic approach might undermine the fragile balance of their defense mechanisms. Some people have lost so much control it can be important to respect the choices they make about what or when to disclose or discuss traumatic topics.
I thought of Viktor Frankl and his comments about the many ways persons responded to the horrible circumstances they shared with him as prisoners in Nazi concentration camps during World War II — the same war that had forever changed Sakura’s life on the other side of the world. Frankl recalled how some prisoners turned against their own fellow sufferers, seeking advantages by aligning with their captors. Some collapsed inwardly and died soon after. Some chose an entirely different course by becoming the best person they could be.
Sakura was one of those remarkable individuals who could see good, remain good, and live fully, despite inexpressible suffering.