Category: Therapeutic Issue

Using A Holistic Approach to Therapy with Clients Experiencing Chronic Illness, Disability, and Mental Health Challenges

Posted on by Psychotherapy.net Team

Prevalence of Chronic Illness/Disability in the United States

The presumption that “typical” abilities and wellness encompass the norm is a viewpoint that pervades United States policies, infrastructures, and societal expectations. The reality is that the majority of the US population grapples with chronic illnesses and disabilities, challenging the conventional definition of “normalcy.” While many associate illness with isolated incidents, dramatic and prolonged interruptions in otherwise regular lives — along with the prevalence of chronic conditions — indicates that illness is, in fact, more typical of the human experience than not.

According to data from the Centers for Disease Control and the Rand Corporation, over half of Americans (51.8%) contend with at least one chronic condition, whether physical or mental. Some estimates are that 42% of the population faces multiple chronic conditions. By comparison, according to the European Council of the EU, one in four, or 25% of European adults live with a chronic illness/disability. These statistics not only reveal the widespread impact of chronic illness but also emphasize the need to shift cultural perspectives surrounding health and ability. To be absolutely clear, in the United States, chronic conditions are the norm, not the exception. In his recent book “The Myth of the Normal,” Gabor Maté challenges prevailing notions of normalcy and underscores the ubiquity of trauma and illness within the diversity of human experiences. Exploring biopsychosocial aspects of chronic illness and disability, Maté exposes fundamentally unhealthy cultural constructs that shape our understanding of what it means to be “normal.” Moreover, in response to an unhealthy environment, Maté asserts that illness is a valid response. His work resonates deeply with my practice, as it highlights the importance of acknowledging the sequelae of trauma in the vast spectrum of human existence.  

As a Clinical Rehabilitation Counselor, my training encompasses both the medical and psychosocial aspects of chronic illness and disability. Moreover, my own personal journey as a cancer survivor and someone diagnosed with Crohn's disease enables me to meet clients from a perspective of lived experience. This experience underscores the importance I place on applying a comprehensive holistic approach to mental health in the context of chronic conditions many of my clients experience. My work in a small group practice specializing in supporting clients with trauma, chronic illness, and disability is a testament to the prevalence of such experiences.

Within my caseload, 95% of clients navigate the challenges of multiple chronic physical and mental conditions, often relying on state-subsidized insurance for healthcare. Among these individuals, approximately 60% identify as female, 25% as gender fluid or transgender, and 15% as male. Their narratives underscore the multifaceted nature of dependence and autonomy across various dimensions of life. From physical and financial to emotional and sexual realms, the complexities of living with chronic conditions influence every aspect of their existence.

For individuals grappling with chronic illness, the connection between past trauma and present health challenges cannot be overlooked. More often than not, these clients report elevated Adverse Childhood Experiences (ACEs) scores, revealing a complex interplay between past trauma and present health challenges. My integrative approach encompassing trauma-informed care, empathy, empowerment, and holistic healing includes attention to my client’s experience of their body. Attention to physical sensations including interoception and proprioception, breath, movement, and reflex patterns, allows me to guide them towards a path of resilience, self-acceptance, and well-being. Recognizing the intricate threads that weave together past experiences, present struggles, and future aspirations creates a space where my clients feel heard and equipped to navigate the complexities of their health journey with resilience and clarity. 

Relationships and Chronic Illness/Disability

One of the prevailing challenges faced by individuals with whom I work who have chronic illness and disability shows up in power dynamics within close relationships. Dependence on a partner for various types of support including financial and logistical, coupled with chronic pain and the struggle to balance gratitude and self-worth, can erode an individual's sense of agency. For those grappling with conditions such as Crohn's disease, fibromyalgia, multiple sclerosis, or rheumatoid arthritis, the unpredictability of their conditions makes planning for the future a daunting task. As a result, vacations, celebrations, and even daily routines are frequently disrupted. The demands of work often deplete their energy, leaving their partners to shoulder the responsibilities of managing a household and caring for children. The strain on intimacy and sexual relationships adds another layer of complexity.  

Partners of those with chronic illness and disability experience their own set of challenges, leading to feelings of frustration and helplessness. Their desire to provide support can transform into a sense of powerlessness as they navigate the complexities of medical interventions, lifestyle changes, and emotional well-being. The dynamic between partners can quickly shift from a place of caring support to caregiver exhaustion and burnout, a source of resentment that creates a cycle of mutual dissatisfaction.

In my therapeutic practice, it is not uncommon for clients to request involving their partners in sessions. Drawing from my unique perspective as someone who navigates a chronic illness while also being a partner to someone with health challenges, I provide insight that resonates with their experiences. This shared understanding fosters open dialogues that explore the intricacies of relationships within the context of chronic conditions.

One poignant example underscores the profound impact of childhood experiences on an individual's journey. A client shared a harrowing memory of their father monitoring their food intake during meals — threatening punishment if they exceeded a prescribed number of bites. This history of food-related trauma has woven itself into their present struggles with Small Intestinal Bacterial Overgrowth (SIBO), a condition marked by pain, diarrhea, gas, and bloating due to bacterial overgrowth in the small intestine. While the impulse to connect trauma to illness is compelling, the client's journey also involves a series of infections necessitating antibiotic treatment over time.

This client’s partner, in their well-intentioned efforts to support, inadvertently triggers their traumatic memories when attempting to manage the client’s food choices. The need for a restrictive diet as part of SIBO treatment further compounds their emotional turmoil, fostering feelings of deprivation and punishment as they strive to heal. Addressing this intricate interplay of trauma and health within the therapeutic space requires a delicate balance.

In a joint session involving both the client and their partner, I employed empathetic communication to navigate their complex dynamic. While acknowledging the partner’s genuine desire to provide assistance, I simultaneously asserted the client’s agency and authority over their own body and treatment. Employing the metaphor of the client as the “captain of their ship,” I emphasized that their body is their vessel, and they remain firmly in control. This approach is of paramount importance, particularly for individuals who already feel a sense of bodily discord and lack of control.

Additionally, it is helpful to recognize the partner’s role in the client’s healing journey. Acknowledging the partner’s commitment to honoring the client’s autonomy becomes an act of spiritual significance, aligning with their broader values. This dual recognition — empowering the client’s autonomy while honoring the partner’s supportive stance — fosters a therapeutic environment that not only addresses the physical aspects of chronic illness but also attends to the emotional, psychological, and relational dimensions.

In another case, my client grappled with chronic Lyme Disease within a relationship plagued with communication challenges, describing their partner as “unresponsive.” When they came for a family session whose purpose was to help them talk about the ramifications of her disease, I realized her partner was very likely on the spectrum. Though not his counselor, I was able to introduce both of them to this possibility, explain how this might be contributing to their difficulties, and help him connect with a counselor of his own.

Finances, Work, and Future Self in Chronic illness/Disability

For those clients navigating a chronic condition on their own, their lives are often precariously situated on what feels like the brink of financial ruin and collapse. With chronic pain or with an unpredictable condition exacerbated by stress, work is a double-edged sword. On the one hand, it may confer some security, sense of accomplishment, and self worth. On the other hand, it may aggravate certain illnesses by contributing to stress and may prevent people from qualifying for federal or state aid.

Most of my clients with chronic illness have applied for disability and are on their second or third appeals. They hang in a limbo where making money can compromise what little chance they have. Barring paralysis or a progressive condition, their chances of receiving disability are slim to none. These clients often seek work they can do from home. They are unwilling to take on student loans because of the precarity of their health. Some earn a living from piecemealing several jobs.

Whenever possible, I try to coordinate care with vocational rehabilitation (VR) services offered by the state which helps people find and obtain work suitable to their strengths and limitations.  

In one case of a client with chronic depression and difficulties which led to him losing his job, I advocated for him to receive a neuropsychological evaluation. Both the client and I felt he was on the spectrum. This enabled him to receive help from VR for job placement and support. By helping him find work that made use of his strengths while limiting his interactions with people, his depression improved along with his self-esteem. Whether living with a chronic physical or mental condition, it is important to remember everyone has strengths as well as limitations.  

Moreover, chronic illness, disability, chronic pain, and trauma can profoundly alter one’s sense of self. As mentioned earlier, the challenges posed by unpredictable and intermittent conditions make it challenging for individuals to plan for their future. This absence of foresight can have far-reaching consequences, undermining clients’ ability to envision a future version of themselves — a capacity often taken for granted. This lack of future-oriented thinking leaves clients susceptible to a multitude of setbacks, affecting their physical, mental, reproductive, financial, and educational well-being.

The ability to manage finances is a skill, yet those who lack both financial resources and a sense of their future self tend to make choices that perpetuate their financial struggles, leading to increased poverty. I’ve come to understand that these clients find it difficult to delay immediate rewards for a future date. Without a clear vision of their existence in the next 5-10 years, they prioritize immediate gains, which is understandable.

A client who was in the foster care system and spent a period of time houseless in their teens worked in the food service industry. Though experienced, their lack of formal education meant they often worked under managers with a degree but less actual experience than they had. Frustration with poor management led to frequent job dissatisfaction. Chronic but unpredictable illness limited their ability to work more than 25 hours per week. This kept them stuck in tip-dependent but ultimately unsatisfying work. Their dissatisfaction influenced their feelings about work in general.

During a period of unemployment, I encouraged them to explore alternative options. It became clear that they had only the barest sense of how much money they actually needed to cover expenses. A critical therapeutic intervention involved helping them create a budget in order to more accurately assess the benefits of a job that offered no tips, but more hourly pay. Even at 25 hours/week, they stood to cover their costs better than with sporadic food service work.  

To arouse clients’ sense of possibility, I lean on existential humanistic and Buddhist psychological teachings. None of us knows when we are going to die. People with long-standing conditions, both physical and psychological, live long and productive lives. To come to terms with having a finite amount of time with no sense of how much time is left is an essential human challenge. My clients experience grief over unlived possibilities. These feelings must be acknowledged and included. One client whose career was interrupted by an ependymoma (a spinal tumor that recurred twice) has grappled not only with ensuing disability from the spinal tumor, but ways she never took her career seriously even before the onset of the disease. Often disease itself becomes a catalyst for deeper exploration and participation.

Wellness Culture, Community, and Chronic Illness/Disability

Our culture’s pervasive and inescapable preoccupation with fitness, appearance, and social status is another hurdle facing people with chronic illness or disability. Research has demonstrated the undeniable mental and physical benefits of engaging in exercise and community. But for those who struggle with chronic illness and disability, these arenas are often outside their reach. These clients find themselves frequently isolated by the exigencies of their illness.

Socializing requires energy, and in the face of household or work demands, friendships fall by the wayside. The COVID pandemic resulted in yet another barrier for people with chronic illness and disability who are at risk of more serious infections. For those with mobility issues, opportunities to exercise are limited. One client with Cerebral Palsy receives only 6-10 sessions of physical therapy per calendar year.

Part of providing holistic therapy is helping clients discover ways to include movement and connection in their daily routines. As an example I work with severa,l clients affected by Ehlers Danlos Syndrome (EDS). EDS is a genetic condition that affects collagen, our body’s connective tissue. It ranges from mild involvement that creates hypermobility in the joints, requiring avoidance of extreme movement practices, to so severe it can cause heart and other organ failures.  

I frequently incorporate QiGong movement exercises in sessions, or I provide clients with short videos to follow. QiGong, a 4,000-years-old mindfulness based movement practice used throughout Asia for health maintenance, healing, and longevity, has been shown to mitigate pain, lower cortisol levels, and improve self-efficacy perceptions. The movements are gentle enough to not strain the body, yet require focused attention. They can be performed standing, seated, or supine. 

For those clients who are housebound much of the time, the need for community is often met by online connections. One client maintains an active online presence and connects through advocacy and providing education about their condition. For a trans teen client attending online school however, face-to-face interactions with peers is missing and contributes to their feeling alone. Like many people his age, he’s reluctant to learn to drive, and though he has applied for many kinds of work, he’s not been able to find employment due to his age. These circumstances compound his isolation. Group therapy has sporadically met those needs, but isolation remains a significant issue for those with chronic illness.


***

In my personal and clinical experience, addressing the mental health needs of individuals with chronic illness and disability requires a holistic and empathetic approach. As a therapist, I have found it essential to challenge prevailing cultural norms, advocate for the acceptance of diverse abilities, and provide a safe space where clients can explore their unique journeys.

At the outset, chronic illness and trauma can feel like burdensome lead, weighing down the spirit and clouding our sense of self. The challenges posed by these experiences may appear insurmountable, the darkness can be overwhelming. Yet, it’s in the crucible of adversity that a profound alchemical process unfolds.

In essence, the alchemical journey of turning lead into gold mirrors the transformative power of the human spirit when faced with chronic illness and trauma. It reminds us that within the depths of our struggles lies the potential for profound growth, healing, and the emergence of our most radiant and precious selves. By fostering open conversations, cultivating self-advocacy, and nurturing supportive relationships, I, and hopefully fellow clinicians reading this, can empower their clients to embrace their identities and navigate the complexities of life with resilience and grace.   

The Challenges and Rewards of Therapeutic Work with Brain-Injured Clients

Posted on by Psychotherapy.net Team

Over the course of my career, I have worked with many people who sustained brain injuries. In the 1980s, I worked in a brain injury rehab program set in a nursing home, then in private practice during the 1990s. For many years since, I have been an employed psychotherapist in nursing homes.

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In my experience, those who have acquired a head injury typically display irritability and quick flashes of verbal anger — aspects of “organic personality change.” The individual may be more impulsive, acting prior to thinking about likely consequences, might show less awareness of social boundaries, and have problems with short term memory. Sharing some of their stories will offer you a glimpse into some of the challenges and opportunities I’ve experienced in working with these clients.

Case Illustrations of Clinical Work with Brain-Injured Clients

Douglas

One of the clients I met while working at an in-patient brain injury rehab program was Douglas, who was in his early twenties, and was injured riding his motorcycle while intoxicated. Anger management was a focus of therapy; he often expressed anger over being injured, and at his father for bringing him to the rehab program. One additional task of therapy was to assist him in formulating a new sense of personal identity — as he was not who he had been, and not yet who he was becoming, but was feeling lost and overwhelmed somewhere in the middle. Another goal was to strengthen his motivation to maintain sobriety in the future.

During a psychotherapy session one day he unexpectedly said, “Getting a brain injury was probably the best thing that could have happened to me.”

“Tell me why you say that, Douglas,” I asked.

“Because otherwise I don’t think there was any way I could have stopped drinking.” But that attitude and outcome are not achieved by all people.

Brandt

During the time I was working in private practice, I also provided psychotherapy and consultation with a statewide head injury program in Massachusetts. That was where I met Brandt, who had an alcohol use disorder, and, over time, had acquired three different brain injuries because he was not able to stop drinking.

Brandt had his first head injury on a construction job site when he was under the influence of alcohol. To others in his life, Brandt appeared to have a friendly and outgoing personality. Yet the overly friendly, and often tactless and joking manner he displayed represented “changes of personality” associated with frontal lobe executive dyscontrol due to his first brain injury — when a piece of work equipment struck him in the forehead.

Because of his frontal lobe dysfunctions, Brandt found it difficult to anticipate or perceive likely consequences of his actions, and he might brush off or disregard cautions and advice offered to him by me or others in his life.

His second injury occurred when he had been drinking one night with friends. They ran out of beer, and Brandt jumped into his Volkswagen Beetle and sped off to buy more. He drove too fast around a curve in the road, the car rolled over and he was ejected from the car. He landed unconscious on the ground in the dark.

Brandt awakened and lifted his head, and immediately in front of his face was a gravestone. He had landed in a graveyard! How could there have been a more pointed and dramatic message about where his drinking would lead him? Nonetheless, he continued drinking until he had a third brain injury that resulted in significant disability, and he was moved into a group home for daily care.

Mrs. Kelly

During the period when I worked in private practice and was offering head-injury-related consultations, I went to Chicago for a co-presentation at a brain injury conference. I spoke about brain injury from a professional point of view, and the co-presenter, Mrs. Kelly, talked about the personal experience of living with a brain injury. Driving home one day, Mrs. Kelly had been struck and injured by a drunk driver.

During our presentation, Mrs. Kelly spoke of the life losses and challenges that had resulted from her injury including relearning to walk, talk, conduct daily tasks, the gains that resulted from her rehab, and from the continuing support of her husband, who had accompanied her to Chicago who was always in her company.

I spoke of the common goals and aims of brain injury rehab, and about the work of individual therapy, group therapy, and family or marital therapy following a brain injury. During our talk, we also shared a particularly poignant background to our shared experiences, because Mrs. Kelly had earlier been one of my teachers in high school. Using her characteristic humor, Mrs. Kelly once said to me, “I used to get mad that I keep forgetting things; but then I realized, why get mad, in a few minutes I’ll forget what I was mad about.”

Rose

My mother-in-law, Rose, became ill with dementia and spent the last months of her life in a nursing home close to where we live. She and I sat in a small dining room during a visit one day a few years ago. A nurse’s aide across the room spoke irritably to a female resident in a wheelchair.

Rose watched, and when the aide left the room, she shook her head and said, “I hate it when they talk that way. She spoke to her like she was a has-been. She’s not a has-been, she’s a have-been.”

“That’s such a wise and beautiful thing to say, Rose,” I remarked.

Ronald

Around that time, I had long been working as an employed psychotherapist in nursing homes, and I was then seeing Ronald for psychotherapy in a different nursing home from where Rose resided. Ronald had been a scientist working at a prominent institute in California, and he drove a red convertible sports car — but sometimes too fast, and he sustained a brain injury in a collision.

What remaining family he had was in the Boston area, and so he found himself at a nursing home outside of Boston. Ronald was depressed and angry. He mostly stayed in his room, reading and listening to classical music. He would make derogatory comments about the other residents and the staff.

I told Ronald the story of the wise comment by my mother-in-law, and I challenged him to conduct a scientific experiment over the coming week: to go about the unit and research who the other residents have been in their lives.

The next week as I walked onto the unit, Ronald approached me holding a small notepad. Referring to notes he’d written, and pointing to different residents, he excitedly recounted things he had learned about them.   

***
 

Conducting psychotherapy with brain-injured clients has typically involved some modifications to my typical approach. It has been important for me to remain alert to the psychological consequences of organic brain dysfunction. My approach with these particular clients has been more educational and directive as opposed to my typical non-directive one; teaching about the effects of the injury and providing behavioral guidance and specific suggestions for social functioning. The information I provide in treatment is more concrete, and offered in smaller bits, with frequent repetitions to aid retention and recall.

I have found it to be enormously gratifying to work with these clients and encourage my colleagues to welcome rather than avoid these opportunities. It allowed me the chance to work with clinicians who taught me to appreciate the psychiatric effects of medical conditions. The work also allowed me opportunities to make a positive difference in the lives of persons who had been severely injured, and in the lives of some family members who had been devastated by the injury to their loved one. 

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

Posted on by rezendevknowfully.com

Acknowledgements

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

An Introduction

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

Deciding How to Die

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

I rang Fionn immediately.

Reviving Dignity and Meaning

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

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

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

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

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

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

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

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

They both then turned and looked at me.

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

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

I waited, watching until his breathing eased.

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

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

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

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

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

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

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

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

Fionn helped me out by indicating where his interest lay.

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

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

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

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

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

The Sustaining Power of Music

I turned my head to look with interest.

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

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

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

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

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

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

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

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

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

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

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

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

“You sure are, Dad,” Liam echoed.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Exploring the Impact of Finn’s Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Exploring Finn’s Wish to Die

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

Tears filled his eyes.

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

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

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

Finn nodded.

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

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

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

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

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

“Can you remember how it began to change?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What sort of cake did Sue bring?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I’m not a coward,” he croaked.

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

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

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

“Yeah. It probably is.”

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

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

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

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

Getting Curious About Fear

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Finn sighed. “Peaceful…”

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

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

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

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

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

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

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

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

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

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

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

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

I grinned. I wanted to know too!

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

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

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

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

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

Deciding To Die

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

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

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

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

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

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

“Hi, Finn.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“So much to deal with….” I murmured.

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

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

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

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

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

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

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

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

An Early Career Lesson in Boundary Setting Helps the Client and Therapist Grow

Posted on by Psychotherapy.net Team

As is true in the lives of clinicians outside of the office, asserting and maintaining clear professional boundaries is essential clinically, ethically, and personally. I have found it not only helpful, but often critical to help my clients gain awareness of the limits in our professional relationship, not only for their safety but for my own. As to be expected, my clients have tested these boundaries, sometimes in minor and other times significant ways. Regardless of the size of these crossings, I have always found their navigation challenging. If their behavior inside of the therapy room is in some way a reflection of similar behavior outside of those walls, then I would like to think that by setting boundaries, I have been helpful in their personal relationships. I’d like to share an instructive experience I had several years ago.

An Early Career Therapeutic Experience with Boundaries

In my early therapeutic work, a client sought help for anxiety and self-esteem issues. Throughout her life, the client had felt misunderstood by parents and peers, leading to a powerful desire to be heard, coupled with a deep need to feel understood. In sessions with me, she often attempted to dominate and control the work, deflected from that work, and resisted my therapeutic efforts and techniques. Having attended for several months, she often interrupted me, changed the direction of counselling, challenged suggestions, resisted recommended coping strategies, and all the while — and quite ironically — pushed for more session time and dropped “doorknob disclosures” at the end of sessions. I often left those sessions feeling frustrated, powerless, and occasionally angry with her. I quickly recognised her need to address these boundary challenges for the sake of her growth, and my own therapeutic — and perhaps personal — peace of mind. The week after a particularly frustrating session in which the client was extremely resistant, I broached the subject of boundaries. I enquired what boundaries meant to her, but the subject was quickly and quite handily deflected and changed. Firm and focused, I resisted the redirection. “Let’s circle back to my question,” I encouraged, keeping my body language open, my expression warm and my eye contact fixed. The client did not respond. Maintaining eye contact, I held space for the silence in the room, allowing a few moments to pass. It was an uneasy silence, like a standoff of sorts. I carefully monitored her emotional response to the intervention. Smiling, I broke the silence. “It appears you couldn’t answer my question, and that’s ok. Perhaps you aren’t ready to answer right now. We can come back to that when you are ready. However, I would really like to share my thoughts on boundaries with you. Could we stay with that for a moment?” I invited. Due to the direct nature of my statement, the client looked at me curiously. “Yes, ok,” she replied, slightly irritated.

A Therapeutic Door Open Once Boundaries are Asserted

Following some psychoeducation around boundaries, I gently shared my thoughts and observations, applying curiosity and compassion to her behaviours that I noticed in our sessions, addressing the boundary violations which had presented over the past few months. I discussed the ethics of counselling and the importance of boundaries, expressing genuine empathy. This intervention opened the door of awareness for the client to explore her own boundaries, and after some discussion, she acknowledged their looseness in certain areas of her life and that pushing boundaries with others helped maintain a level of control at a time when she did not feel in control of her emotions and thoughts. Keeping focus, we talked through the rationale behind boundaries, highlighting how doing so created a safe space for exploration and growth. I offered, “fostering strong healthy boundaries within our therapeutic relationship will help you harness boundaries in your personal life and move you closer to your goals.” Concluding the pivotal discussion, we defined and discussed the therapeutic framework, ensuring the shared understanding that boundaries were necessary for a productive therapeutic relationship, and laid the foundation for a revised framework we would adhere to as we re-contracted with each other. My client seemed to appreciate my assertiveness, and the renewed structure of our work together. From that point, our sessions flowed with more focus and structure, and she demonstrated a will to apply the techniques both in and outside of the therapy room. Whenever she subsequently attempted to push boundaries in session, I quickly re-focused on that earlier breakthrough session. She was even able to discuss instances from outside of therapy where she was able to assert and maintain healthy boundaries. As boundaries became more consistent in her life, her self-esteem improved, and her self-confidence expanded. Growth, resilience and self-discovery followed. By holding firm to my boundaries, I demonstrated professionalism while modelling self-respect and honouring my client’s process. Doing so allowed her to gradually understand the significance of these boundaries and the transformative potential she held. In retrospect, I believe we identified the underlying motivations behind her actions, holding space for fear of vulnerability, and the emotional injury underneath the need for control. This exploration fostered healing, self-awareness, and empowered my client to take ownership of her behaviour, laying the foundation for personal transformation. Our work flourished, and in the process, I gained confidence in setting boundaries with future clients. I’m not saying that clients no longer test me, but I am thankful for that and similar early-career opportunities to assert and hold fast to boundaries.

Mary Jo Barrett on the Collaborative Treatment of Incest and Complex Developmental Trauma

Posted on by Psychotherapy.net Team
Lawrence Rubin: Hi, Mary Jo, thanks for joining me today and sharing your clinical expertise in the systemic treatment of incest and complex developmental trauma. Just before we went live, you were sharing an experience you had while giving a webinar this last weekend, and something caught my ear that I wanted to ask you about. You suggested that there is something different between what is currently being practiced in the field of incest and complex developmental trauma, and what, in your experience, is correct, or what should be practiced.
Mary Jo Barrett: That’s a good place to begin. When I first started, which was 45 years ago, I was a worker for the state, basically doing in-home counseling. I discovered that in all these child abuse and neglect cases, there was a significant number of cases involving incest and sexual abuse — whether immediate family members or close family members or clergy or whatever. I would go to my supervisors for guidance, but no one really knew how to treat it.
For example, Minuchin told me that I didn’t need to focus on the incest. I just needed to look at restructuring and building a hierarchy, and that the incest would then be alleviated. Carl Whitaker, who I was madly in love with, basically said, “You know what? I don’t know what to tell you.” At least that was honest. He said, “I do schizophrenia. You better figure out how to do incest.” He was my teacher, so I decided I needed to figure it out.
And so, over the years, I started asking my clients more formally about incest and sexual abuse. I also had my supervisees ask their clients. And whether I was conducting training in Europe or here, I began to ask the clients what the most effective thing about their therapeutic experiences was, and what about the therapy they had received made it “good therapy.”
Basically, nobody said “techniques.” They said what we know they would say and did actually say. It was the relationship between the therapist and client. But they even said more specific things. And of the specific things they said, I narrowed the list down to what I call the five essential ingredients of trauma treatment. But what they said applies to all models of treatment. And as we know, none of these models are better than the other I developed what I call a meta-model that applies to any trauma protocol that exists based on these five essential ingredients. And so, whether you do IFS or CBT or SC or any of the alphabet soup of techniques or protocols that are out there, they will be successful if they have the five essential ingredients.   

The Key to Effective Trauma Treatment is Collaboration

LR: What exactly are these five ingredients for effective trauma treatment?
MB: People, especially those who have been abused, need to feel that they have value, power, control, and connection. So, these “ingredients” include the client:

  • feeling valued
  • learning specific skills in finding resources
  • understanding contextual variables needed for an engaged mind state
  • developing workable realities
  • building a hopeful vision for the future

When a therapist, case manager, or foster care worker gets stuck with a client who has been abused or neglected, I suggest that they don’t go back to the protocol, but instead to the relationship.

LR: Going back to the question that I opened with, how do you see what’s in the zeitgeist now, what’s popular now, as being lacking in comparison to this collaborative model that you developed?
MB: The basic essence is that I go to the client to tell me what to do, versus going to a model or technique to tell me what to do.
LR: Can you think of a recent clinical instance in which the relationship seemed that much more important in the moment than any technique or model?
MB: Larry, every day! That is my model. Every session. In every session when you’re talking about trauma, there will be an impasse. I call it differently. In any moment, there’s going to be what I call a traumatic stress, which means the client, because of their trauma, is going to experience therapy as dangerous.
As we always say, survivors often see danger where danger doesn’t exist. I mean, that’s a standard thing. But that happens in therapy all the time. That’s because the therapeutic relationship is based on hierarchy and attachment. There is a hierarchy, right? I mean the therapist has more power. And the therapist is often controlling the sessions or the direction or what’s going on. And there’s a necessary attachment. There’s going to be an attachment between therapist and client.
Abuse and neglect are embedded in hierarchical attachment relationships. Now, the thing is, every time I say abuse and neglect, people might go, “But we’re talking about trauma.” And I’m saying, again, almost all the trauma cases we talk about revolve around interrelationship violations.
LR: So, if we practice anything other than a collaborative model, then we may in some way be replicating the hierarchical violation in the family that contributed to that abuse.
MB: I’d say that a majority of these clients anticipate and experience, from time to time, that violation in the therapeutic relationship.
LR: So, if the therapist moves too quickly or dives right into the trauma narrative or says, “Tell me about this,” or, “I’d like you to do this,” they are abusing their power? Even using directive words or a tone of voice or body posture can trigger a client so that they feel unsafe. And that’s when you would be cognizant of that, hypersensitive to that, and readjust any of those facets of your approach?
MB: Correct. And the collaborative change model is exactly that cycle. What you just described. And what’s interesting to me is that the collaborative change model is a natural model. And when I describe it, folks at the clinic say, “Oh, my god, yeah!” And the good clinician says, “That’s what I do in my sessions anyway.” And all I’m saying is, make it conscious. It’s a natural cycle of change.
The first phase is creating a context — which is creating refuge, making assessment, figuring out what’s going on — then making a direction, deciding what kind of intervention to use. And then when we start doing our interventions, which is natural, we’re challenging, right? And the relationship becomes embedded in this hierarchy because I’m sort of pushing and challenging by asking them to do something different. And in that moment, the client might experience a moment of fight-flight-freeze-submit. Or fix! And I have to, as a clinician, recognize that.
And in that moment, instead of pushing harder to make an assumption of, “Oh, they can’t tell,” or whatever it is, I need to stop and recreate a context of change. So, at that moment, I stop and say, “What do you need now? What’s going on? How do you feel? Should I slow down? What’s happening?”
I’ll give you an example. I had a client who often during the sessions would say, repetitively, “You don’t get it. You don’t get it. You don’t get it.” And I’d often get defensive. I’d sometimes want to say, “Well, help me understand,” or, “Explain it.” And then one day after the session, I was thinking, “I think that’s a trauma response. So, I said, “I’m wondering if when I’m doing something that triggers you, you experience me as threatening and go into ‘You don’t get it’ as a repetitive response.” And she really thought about it and looked at it and she said, “You know, I’ve often felt there’s things you do that remind me of my mother.”
This client’s mother was like Joan Crawford’s character in Mommie Dearest, and we’re not just talking severely abusive. I asked her what reminded me in those moments of her mother. In response, she said that I talked loudly, and it was the way I dressed in skirts. She experienced me as dressing in a way that was, for her, reminiscent of her mother, which she experienced as provocative. I don’t know that it was, but she experienced it as such, so for her, it was.
So, when we then had that conversation, and from then on, I did consciously change how I dressed on the days I saw her. And I consciously changed my voice. And after that conversation, she never said, “You don’t get it,” again.
LR: So, when she emphatically repeated, “You don’t get it, you don’t get it,” it was metaphoric for something like, “You’re not hearing me, that hurts, stop it, you’re not hearing me, you’re dressing in a way that confuses me. You’re not hearing me. Daddy did this, or Mommy did this, or my brother did this.” It’s like this broad statement of, “I am feeling abused right now.” She may not have been able to put a finger on exactly what element of your relational moment was triggering her, but “You don’t get it,” meant, “I am feeling powerless and unsafe.”
MB: Violated. She was feeling violated.
LR: She was feeling violated. Because you’re much more cognizant about the relationship and the attachment, and breaches in the attachment, you were able to look inward and ask yourself, “What could I be doing? How could how I be talking? What would I be wearing? What might we be talking about? What is it about the way I’m asking questions that could be replicating at some level what happened in her family?”
MB: Yes.
LR: Did I get it right?
MB: You did get it. I should bring up my PowerPoint. You’re doing a very good job. I have three slides that I use in trainings, which I introduce by saying, “These are the three watchwords or phrases of my faith.” The first one is by Mandela that says, “A good head and good heart are always a formidable combination.” The second one was by R.D. Laing who talked about the importance of awareness by saying something like, “If you aren’t aware that you’re not aware, there’s nothing you could do to make change.” And the third one is by Jay Woodman which says that “Life is a series of cycles of getting lost and finding yourself.” And that each time you’re lost, if you look at it as a possibility, then you will find yourself in a new place. And so, my thing is, therapy is a cycle of getting lost and finding yourself again. And once you’re aware of that, you integrate your mind and your brain, your heart, and you’re golden.   

The Healing Power of the Therapeutic Relationship

LR: Is there something about trauma, and incest in particular, that drives clinicians to cleave to techniques and theoretical models; bypassing what they truly know to be effective, with is the relationship?
MB: It’s an integration of the two. When we spoke with these clients, it was clear that they did need new skills. It was the third most important thing, not the first. But the first thing they said was connection. The second thing they said was they had to feel valued, and they had to value the clinician. Then they said they had to feel empowered. And then they said skills.
Everybody that’s developed a protocol model is going to argue with me and say the relationship is the basis of all those protocol models. I would say I got you; I believe you. But if you ask the people who are trained in those models, they will say the emphasis is on the protocol and the interventions.
And they would also say that the difference is that when they’re stuck or a client gets activated, that it’s “go back to the protocol,” versus going to the client to collaborate.
LR: I wonder if there’s something about trauma, and particularly incest, that compels clinicians, especially those who aren’t experienced, to have to “do something.”
MB: A hundred percent! This is actually the new thing that I’ve added to the “fight-flight-freeze” paradigm, which is “fix.” So, I think what happens when a clinician becomes overwhelmed — I call it a place of traumatic stress — fix becomes part of a trauma reaction. The traumatic stress reactions.
When a therapist falls into a “fix-it” state, that should be an indication that they are in the trauma field and are feeling dysregulated. They then have to get re-regulated in order to move to a different place. And it’s the same with the client, who at that moment needs skills to re-regulate themself. I don’t believe when a client or a therapist is dysregulating, that’s the time to automatically use a technique.
LR: So, by jumping in with “a fix,” the therapist might be trying to regulate themselves at the cost of their client’s regulation.
MB: I want to say one other thing which is not going to be popular. I believe that when therapists jump in with a technique, they’re hoping it’s a solution for the consumer of their services.
LR: Giving them something.
MB: Giving them something, which is capitalism. Everything is an agreement in the contract with my clients.

The Importance of Working Systemically with Incest

LR: Someone reading this interview might say, “Well, it sounds like she’s working with the individual,” but I know you’re deeply systemic. So, I’m assuming that this collaborative model infuses your family work around complex developmental trauma?
MB: Yes. Most of the clinical work I do is with couples and families. And this goes back to the research we did with these clients who said that rarely, if ever, did other clinicians include their family. So, what would happen is that after those sessions with the “other” therapists, these clients would go home and have abusive fights or get hit. Or a parent would continue the abuse or violate.
Here, I go back to what I said earlier. Abuse, neglect, and childhood developmental trauma are embedded in a relationship of hierarchy and attachment. So, I believe healing should happen in a relationship.
I want the therapy to recreate some of the crisis right in the room with me. So, if there’s a fight, and dissociation, we all can witness it together and address it in the moment — together. If there’s eyeball-rolling that then triggers the other person, I want it to happen in the room, because those are the cycles that cause the traumatic stress at home.
Everything I’m saying to you here and now is what I say in the first session. When I start a session, I want the safety in our relationship to spill over into their relationship. I want their relationship to be a source of regulation. Not me. I don’t want to be the primary person in their lives.
LR: I can see how this would apply working with intimate partner violence. But are you saying that in cases where there is past or present childhood incest, that you would work systemically with either the current or past family members?
MB: Let me delineate two things. One; when the incest is currently happening and its children, yes, I include everybody. But I have all sorts of rules and boundaries. If it’s currently happening, and in most states, if incest is currently happening, then usually the perpetrator, whether it’s a sibling or a parent or not, is kept away from the child, right?
So, I don’t bring the alleged offender, or the offender, into the room with the victim until they’ve acknowledged facts. So, if they’re denying facts and saying, “She made me do it,” or, “He made me do it,” or, “It never happened,” I don’t do family with them. But I would do family with other family members. But I don’t bring the alleged offender into the room until after they’re no longer denying facts. 
LR: Is that enough? Just getting past the point of denial? Would they have had to have done some significant reparative work of their own before you brought them into the room with the victim?
MB: They are in therapy. Yeah. I mean if it’s currently happening, then the offender is in individual and group therapy, according to how I think good incest therapy should happen. And the rest of the family are either in individual, group, or family treatment for whatever their issues are. And the kids could be in individual concurrently with the family therapy.And then when the violator has met certain criteria, then they can start coming into the sessions.

LR: So, who’s your client? In a case of incest, where it happens currently, or even in the past, who do you identify as the primary client?
MB: The family. But/and my collaboration is with all. It’s a team. I mean it takes a village. Absolutely. When we’re talking incest, it can’t be done effectively by one therapist.
LR: Do you or can you even work effectively with adult survivors of childhood incest?
MB: I’ve developed what I call the “family dialogue program,” which is for adult survivors with their families. And so, I do bring them together but it’s different. I often do it in these intense weekend workshops because if people live all over the country, it depends on if we’re doing therapy about wanting to talk about the abuse and neglect or are we doing what I call the third reality, which is, let’s just focus on the future. Let’s not focus on, did it happen, didn’t it happen, what’s going on? Let’s just focus on, am I going to come to your funeral? Am I going to come to Passover? How can we be in the room together? Am I going to go to my niece’s wedding? Are you going to ever meet your grandchildren? That kind of thing.
LR: That presumes that the perpetrator must take responsibility. They must be willing to listen, at least. Be present and listen. In other words, if you want to ever see your grandkids, you’re going to listen to me. You’re going to hear me. And that perpetrator may leave not feeling very healed, but at least he or she will have given the opportunity to the victim to be heard.
MB: And that’s why I call it the third reality. Because we’re just focusing on, “it’s not about your reality,” it’s about if you want to see your grandchildren. If I want to come to your house, are you going to be able to tolerate me…you know, me believing this and being in the same room as you.
LR: In a sense, it’s a way for the victim to recapture some power.
MB: Oh, absolutely. And that’s what most survivors will say to me. I mean a lot of people have said, “I was in therapy for 10 years, and that weekend with my father was the most important thing in my healing.”

The Gratification of Working with Trauma and Incest

LR: Okay, okay. My guess is that many in private practice would run when they receive a referral for incest. But you seem to run toward it.
MB: I don’t think people in private practice run from the adult survivors, but they run from when it’s currently happening.
LR: Why is that?
MB: Because I think it is one of the greatest taboos. And they never learned how to deal with it. And I think they never learned how to manage. And they often don’t understand how anybody can even want to see their father or their brother or their mother based on what they’ve done to me. Or done to them. Done to the victim. And so, I think a lot of them experience transference and/or feel inadequate.

I don’t know if it was a particular case, and I said to my husband, “What kind of person likes working with sex offenders?”
And in terms of me, Larry, I supposed we could get me on a couch to figure out why. I do remember very distinctly one time bolting out of bed, like sitting up straight. I don’t know if it was a particular case, and I said to my husband, “What kind of person likes working with sex offenders?”
But I would rather work with incest any day of the week over depression because people I work with change. And I see that change. I have seen plenty of sex offenders change. And I’ve had the fortunate experience of being able to follow up on some of my very first cases. I’ve seen one of my first cases 40 years after they stopped. It was an unbelievable experience.
Well, partly it was fun because I got to ask them all sorts of questions. I’ve always been a very creative therapist, where I just make shit up as I go along, that seems to fit. I remember one of my cases — it was incest and domestic violence. The father was in supervision and was told he couldn’t be within 365 yards of his family when he first got out of jail. He actually parked a mobile home 365 yards from the family home. And he was something else.
About a year into it, maybe less, I went back to court to get permission to have him come to family sessions. And he did. And one time, I was doing a good old family therapy looking for strengths, and I said to them, “You’re not always abusing each other. There are times when you’re not. Let’s talk about those times.” And the kids were younger, like 16, 11, and 10. I handed out these little recipe cards where I asked each family member to write down the recipe for nonviolence. Like a cup of this, and 3 tablespoons of that.
I gathered them all and laminated them, and then had them talk about it. The mother said, “It’s half a cup of going to church, and another quarter of a cup is no alcohol.” I mean that kind of stuff. And so literally 30 years later, I interviewed the same family. And the woman, the daughter who was the incest survivor was 40-something. I asked her a couple questions, one of which was whether she had gone to any trauma therapy. She said, “Why would I? I already had it.” So, I asked, “When you were getting married, or dating, what was that like? Were you always anxious? Were you afraid?” She opened her purse and pulled out the laminated card, and said, “I only dated people that had the ingredients.”
LR: Talk about having an impact. Wow, that must have felt great.
MB: I burst into tears. I didn’t do the initial interview, one of my graduate students did. But I was behind a one-way mirror, because who wouldn’t want to see one of their first clients? I went in and I asked them questions. So, in fact, there’s an example of the use of a particular skill. I don’t know that- would it have been the same if it hadn’t really come from them? I don’t know.
LR: Had you not had a relationship, they wouldn’t have taken the cards to begin with.
MB: Right, right.
LR: Do you see yourself in charge of the treatment village when working with the perpetrator?
MB: I have a case right now of sibling incest, and one of the kids is a young adult, but not even, I mean probably a teenager still, 18, 19, who is in individual therapy. I’m trying to do a family session because the parents have two children. So, the parents are involved, and the son who offended his sister. And I’m trying to coordinate. And the sister’s therapist didn’t call me.
LR: What recourse do you have?
MB: Well, the recourse I have is the parents. He is still a teenager. So, the parents can call this person up and say, “Our daughter signed a release, we signed a release. You need to call.” I’m not saying it in a nasty way. But I try to avoid doing that because I don’t need to start an adversarial relationship. But that’s the recourse I have. If the person was an adult, I mean I’d still have the parents to talk to their child and say, “Look, we want to heal this.” As it turned out, the son’s individual therapist calls me and cooperates. We have a great working relationship.

The Complex Arena of Incest Work

LR: Earlier on in one of our conversations, you said, “Incest is virtually neglected in our field.” Clearly, incest hasn’t stopped.
MB: Incest hasn’t decreased at all since I started in the field in ’78.
LR: What do you mean it’s neglected? By clinicians? By researchers?
MB: : I think everybody’s neglecting it. I think that the problem is that we’ve lumped trauma into one thing — complex developmental trauma.

I think that there is something very important to calling violence or violations what they are. Incest is unique. It’s not just a sexual assault. It’s unique because this is often a relationship where the people also have a very positive connection. “This is my parent,” they might say. I had a client way back, I mean again, 30 or so years, who wrote a poem. The one line that sticks out into my head was — and I don’t think she was writing it just to me, it was in general — she said, “I asked you to put an end to the abuse, and you put an end to my family.”

LR: Oh! Did she write the poem to you?
MB: I don’t think it was to me because I asked her. It was to the system. She’s another one that I still have contact with because periodically she’ll write me and say things like, “I just had a baby, just won a marathon.” I mean that kind of stuff. I think professionals feel anxious. I think they feel traumatized. I think it feels like you said. It’s such a moral violation that, as clinicians, we don’t know how to manage. How do I manage that I care about somebody? How do I manage that this woman stayed married to somebody who sexually abused her child?

I just think the taboo is so deeply entrenched that it causes such distress to those who work in this area. I just was working with a family where one of the children was sexually abused. And the other two weren’t. And when I talked to all of them, I said, “All of you were abused. But what happened to Susie is more of a moral violation.” And so that’s why people can’t tolerate it. I think there’s something about not being able to tolerate it. Like I said, I can find something positive. It makes sense to me that someone can be abused by a family member and still care.

LR: The popularity of complex developmental trauma overshadows the clinical attention on sexual assault.
MB: All I know is that so many clients tell me that people either never asked them or understood it. So, it just gets lumped into a category of trauma. And all traumas are not created equal. I’m not saying incest is worse than being physically abused. I’m not saying it’s worse, I’m just saying it has its own unique connected relationship with somebody they cared about who I also had many positives. And it leaves me even in some ways more confused because it isn’t linear or simple. Even if the person was abused by somebody that came and left like a babysitter or Boy Scout leader, with whom they also had an intimate relationship, it’s very confusing. 
LR: The deepest form of betrayal.
MB: Yes. I think sometimes clinicians can’t manage that level of complexity. Which goes back to your question; “Give me some techniques, it makes things less complex. I can feel better about myself if I know how to do this. Do that.” Larry, every single day, I go, “Wait, I don’t know what I’m doing exactly. What do I do now? I just had this explosion.”

I was sitting in the room last week with somebody that got up, grabbed something off my table, threw it on the ground, and smashed it. “I got to go,” they said So, I said, “Wait a minute, okay, let me figure out.” What was I going to say in that moment? “Follow my finger?”

LR: What did you do? How did you handle the moment?
MB: What I did in that moment was said, “I need a drink of water. You need to sit down. I am feeling afraid. And I want to talk about this. But right now, I need to calm down. And you need to. We both need to.” I had been seeing this guy for a while. It made sense to say, “We need to regulate.”

Well, the wife was there, and they have a child. But the child wasn’t there. I had a separate session with the child. And I had a separate session with the wife. I did break them all up. And then I had a session with him, and we just talked about it. And I talked to him. And of course, like every other, he said, “This is what happens when she does blah, blah, blah.” “This is what happens when my child…” And I explained to him that acts of violence are linear. I don’t think I said “linear,” but… “I get it. It is all these other things that activate you. However, you have to make a decision about how you’re going to react to these things.”

LR: I would see where a younger therapist, or a frightened or threatened therapist might have ended the session immediately, out of fear for themselves, out of loss of control of the session. But you saw it as part of the way the system functions, and your role in that moment was to regulate. To me, the external regulator, the governor of sorts. Is apology critical?
MB: Acknowledgment is important, not apology. Because people say they’re sorry very easily.
LR: So, how do you know when an acknowledgment is sincere and productive, moving forward?
MB: So, when somebody is going to make a formal acknowledgment, it’s a planned session where they write a narrative. They write it down, they talk about… Basically, I have them talk about facts, impact, responsibility. So, they’re giving it to me beforehand. And that’s part of the therapy process. They’re writing their acknowledgement as a therapeutic technique. So, they’re writing this, and that’s how I know it’s sincere.
LR: What are some of the common presenting problems that people come to therapy with that raise your incest red flags?
MB: Well, on that level, they probably don’t look any different than any other form of abuse, neglect, or violation. They really don’t. Eating disorders, self-mutilating, suicide. Any of those things. Most of these are symptoms, I think are survival skills. I think they’re skills that people have used over time to survive their abuse and neglect. And now it’s become problematic. The skills themselves are problematic. The skills work. If I drank too much, if I cut, if I was sexually promiscuous, if I was suicidal, if I was dissociating. It might have worked to avoid memory and pain. That’s how I tell my clients; that most of their symptoms are utilized to avoid memory and pain until they don’t.

And now the symptoms themselves are causing the pain. To me, incest doesn’t look any different. What happens is, as I start my sessions by asking people how they heard about me.

If they didn’t know my name, they might have typed in “trauma, abuse, childhood something.” And it’s not just “therapy.” Usually, they got to me, somehow, they typed something else in. Or they got to me through a therapist. And so, when they say trauma, which is usually what it is, I then say, “Look, if we’re going to talk about it, we’re not going to talk about it now. But I need you to know I feel really comfortable talking about incest. I feel really comfortable talking about sibling abuse. I feel comfortable talking if you beat each other up.” So, I’m just saying, down the road, if any of those things come up, I feel comfortable.

LR: Has there ever been an instance where all roads pointed to incest and the person allowed you down that road, right up to the door, and then just closed it in your face?
MB: No. When I take a family history, when I do a genogram, and everything points to incest, I might just say, “You know what? I just need you to know from what you’re telling me; I’m not saying it was incest. But there might be, it could have been. It feels to me like emotional incest at least. Like you are hierarchically your father’s peer. Or it feels like you and your brother turned to each other in ways to get affection that you didn’t get from anyone else or your parent(s).”

So, it doesn’t have to be. And this isn’t your question. But it’s a question people often ask me. Do you need to know all the story to help? And the answer is no. 
LR: And I think clinicians sometimes may forget that incest is a violation of hierarchy. It’s a violation of trust. And not all incestuous relationships are sexual. Are there any questions I could have asked or should have asked?
MB: Well, I mean we have maybe a couple of million. But I think what I would say is, you know, we should talk again.
LR: I would like that. Thanks Mary Jo.

The CORE Approach to Therapy: Helping Jennie Find Resilience

Posted on by Psychotherapy.net Team

A 58-year-old CT scan technician at a local hospital, the youngest of three sisters, and a recovering alcoholic, Jennie came to therapy four months after healing from surgery to repair an atrial septic defect, one of two major congenital holes in her heart. The repair of one of the major defects, and other secondary repairs had been done during Jennie’s childhood. When we began her treatment, Jennie was about three months into a second episode of sobriety after a relapse prior to heart surgery.

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As Scott Miller’s research into therapeutic effectiveness has taught us, the relationship is the key variable in virtually any modality. With this in mind, I decided to utilize the CORE method with Jennie to develop a safe, trusting context in which a strong therapeutic alliance could develop. The method offers a schematic guideline for the utilization of intuition as a curative dimension, particularly in the treatment of trauma. The model is comprised of four components.

Connecting in a caring climate of calm and comfort

Orienting toward strengths, including inner wisdom

Resourcing resilience, evoking awareness of capacity

Establishing strengths that endure, including symbols and metaphors

Connection

When Jennie first came to therapy, my intent was to attune to her and to her story in a way that would communicate a sense of being heard and clinically “held.” My intention was to create an atmosphere of positive regard in which Jennie would experience acceptance and, with her nervous system sufficiently regulated, feel safe enough to address past painful memories and traumatic events of the past. My strategy was to build a connection with attunement to Jennie’s frame of reference, her beliefs, and her presentation and language, to create a context in which Jennie might better understand events of the present.

As our alliance flourished, I would look for opportunities to offer trance, possibly with a lengthier induction, but maybe a short absorption, in which Jennie might find latent or cut-off resources she could apply in future situations. In this way, I was able to help her to identify and integrate new resources in the service of managing her emotions and behavior in future situations.

For the first two sessions, I mostly listened to Jennie’s story, affirming the trials and problems she revealed. In doing so, I gently guided Jennie to express as clearly as she could what she hoped to get from her therapy. Although I didn’t know at first, or even at the start of any particular session how exactly I might utilize methods of hypnosis and trance in combination with ideas arising from my intuition, I hoped that the strength of our connection, characterized by validation of both Jennie’s struggles and her strengths, would ultimately lead her to recognize and absorb a belief in her own resilience and achieve her clinical goals.

I trusted that as I listened to Jennie’s story with compassion, attuned with an empathic gaze, and validating responses, that I would pick up both overt and minimal cues of what was most important for her. I also believed that as I scanned the impressions arising from my clinical observations, I would recognize cues for what might be needed to help her learn to recognize and shift into a state of calm when sympathetic arousal overwhelmed her emotional boundaries, and what points would stand out for me for utilization of trance.

It did not take long for Jennie to come to her goals. She wanted to deal with cumulative stress that would “pile up” and lead to “rage that can get out of control.” During exploration of her major life stressors, Jennie reported a difficult under-staffed work setting as well as on-going communication problems in the family of origin which included at the time a terminally ill brother-in-law and misunderstandings between herself and her two older sisters, Naida and Meg, that often involved the oldest sister’s daughter, Marcia, a niece who was close to Jennie in age and whom Jennie considered a close friend.

Although Jennie’s life partner, Tony, was dealing with a terminally ill mother, this added stress in Tony’s life was not causing conflict in their life together. From all reports, this primary relationship appeared to be a stable area and an island of support for Jennie. Clearly, she was more likely to be triggered into anger by relationship disturbances with her siblings or with coworkers when differences of opinion resulted in disagreements and distorted perceptions.

Such interpersonal static would cause Jennie to question her understanding of a situation, trying often with difficulty to determine her part in the problem. Often, the aftermath would be distance from her niece or from a sister or might form resentments toward a co-worker that could affect her morale and threaten her sense of competent efficiency at her job.

While Jennie reported no incidents of physical violence toward anyone with whom she would get angry, she expressed high motivation to learn to refrain from lashing out and making disagreements into larger issues that would disrupt contact with her sisters and leave her feeling bereft and disappointed in herself.

These types of painful emotional episodes reminded Jennie of the dysfunction and traumatic chaos caused by alcoholism in her family of origin. She wanted to understand how the old images, left-over impressions, and painful memories of the past affected her in her relationships now.

In the service of self-differentiation, Jennie longed to understand her personal role in these painful experiences. As therapy progressed, Jennie became even more consciously motivated to find strategies for reducing the emotional/somatic arousal that would break through her conscious intent to refrain from lashing out.

Orientation: Toward Strength and Inner Wisdom

My realization was that an inner wise intelligence was available for utilization as part of problem solving, and in this case, specifically for healing trauma via re-association of cut-off strengths and resources.

It seemed both clinically and intuitively advisable to consider orienting Jennie toward her strength and helping her to access via her intuitive, inner wisdom. Jennie, I intuitively hypothesized, would benefit from an approach that would utilize trance and also provide some solid stress management skills. Both the intuitive and the practical would serve to guide Jennie toward the resources she wanted for managing both her emotions and her behaviors, particularly during interpersonal stress and conflict. Like every feature of CORE, intuition would be best accomplished with the CORE features of an approach that would access the non-conscious processes of the intuitive dimension of mind to remind Jennie of strengths she had already used in her life, and access dormant and latent strengths that were, for the moment, dissociated from a consciousness plagued by conscious as well as subliminal memories from her past.

First Intuitive Impressions

As therapy began, so did both overt and minimal cues as well as intuitive impressions. My first initial postulation, based on Jennies wide, welcoming smile, was that she had relational resources she was evidencing, but not fully aware of. I sensed based on the way she connected on screen, face-to-face, eagerly listening to what I chose to say, that Jennie might be open to the focused attention of hypnotic trance, with or without eyes open. While later this proved to be true, at first it was more of a hunch as she was readily beginning to let me know her by revealing a background history of emotional neglect, family conflict, and multiple complex losses, as well as the recent operation to correct a congenital heart defect.

It did not take long for a certain current situation in Jennie’s work life to give me a chance to test out my hypothesis. The idea for the experiential moment came intuitively in the third session. I was working on two channels, the intuitive and the clinical, listening to Jennie, and paying attention to her non-verbals. I was also scanning my own hypotheses. As I was also sorting out clinically what direction I might go in next, Jennie’s narrative gave me the inspiration, an intuitive idea.

Resourcing Resilience

I was able to guide Jennie toward the realization that inner strengths existed and could be available — in this instance, using a brief trance and metaphor, as well as a dissociative moment in the service of integration of strengths.

Jennie revealed that in the imaging department, a complaining and underperforming co-worker was “driving me crazy!” (I was now in intuitive territory). Extremely conscientious in her work, Jennie could feel her anger brewing and escalating as the co-worker’s poor work ethic and performance was leaving her overwhelmed and frustrated. Jennie was adamant that she did not want to lash out or do anything to cause problems for herself at the job, as had happened in other situations in the past. She wanted some help to calm herself so she could cope in a different way.

“Just ignore this person and go about your business,” might have worked for some people, but Jennie’s anger was deeply embedded in her emotional and operational self. I intuited that reaching her non-conscious intuitive mind was the way to go.

“I am so angry when I go in and I see her! I feel like I am just a bitch!”

In that moment, I remembered her history of conflict with two older sisters who had blamed Jennie and called her a bitch! I also knew Jennie had not just a broad smile, but a way of seeing the world with humor. How to externalize this self-denigrating sense of herself was the intuitive question — the answer came quickly and surprised me with its humor and potential to utilize Jennie’s sense of humor — without formal trance. I also knew that I was going to trade in what had felt like a positive alliance.

“Jennie, I have this idea and you can tell me if it seems too odd. (She agreed to hear the idea) Have you ever seen a spray perfume bottle?”

“I just happen to have a very fancy one,” Jennie replied.

“What if you imagine that it is filled with a perfume called “Eau de Bitch?” And you can imagine that you can spray it all around when you go into work, so you know it’s just in the air and it’s not in you!”

Now chuckling, she said; “I love that idea!” I’m going to do it!

Evoking Endurance

“Well, let’s take it one step further, okay? You could also have another imaginary bottle that could be for you. This one could be sprayed in the air like an air cleaner, or on you like perfume. This one could be called “Eau de Calm.”

Now fully belly-laughing, Jennie reported that she was actually going to use the real spray bottle for “Eau-de-Bitch.” She later sent me a picture of the bottle and reported at the next session that not only did she no longer feel bothered by the co-worker, but Eau-de-Bitch could also be a go-to when she was upset by her sisters.

***

Over time, using intuition in my work, and teaching others how to use this psychic dimension of mind, I have learned that although people might understand the concept of what intuition is or can be, may clinicians want something more concrete about how to utilize intuition in the clinical setting — or in life.

[Editor Note: “Jennie” has given the author permission to share her story on psychology platforms for teaching purposes.]    

A Shared Diagnosis: Managing Breast Cancer Together

Posted on by Psychotherapy.net Team

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?  

Containing The Adult ADHD Fad — With a Rejoinder from ChatGPT

Posted on by Psychotherapy.net Team

A sad and fairly ubiquitous aspect of human fallibility is that we are extremely suggestable suckers for fashion. Psychiatry is no exception — its history is littered with recurrent fads. The specific details vary, but the pattern is always pretty much the same.

Dangerous Psychiatric Fads

  1. Charismatic promoters identify a new and plausible diagnosis; do some second-rate research suggesting it “exists,” write a lot of papers, and give a lot of workshops and conferences.
  2. Media picks up the story, sensationalizes the “new findings,” and transforms lousy evidence into a vital new discovery.
  3. Whenever a potential pill treatment is available, Pharma marketing goes into an extravagantly financed, high-gear marketing mode — enthusiastically hyping the diagnosis and the medication in every possible venue.
  4. Benefits of the new diagnosis and treatment are widely publicized; risks and harmful unintended consequences are neglected.
  5. Primary care docs are especially targeted because they do most of the prescribing of psych meds, have the least training, and aren’t given adequate time to do careful evaluations.
  6. Patients are seduced by drug ads to “ask your doctor” about the diagnosis and the pill to treat it. “Asking your doctor” usually results in getting the medication.
  7. These familiar patterns of fad development are now greatly speeded up and given immediate worldwide distribution via social networking on the internet.
  8. Diagnostic rates rise exponentially in a very short time.
Some dangerous fads in medicine have lasted thousands of years (e.g. bleeding, purging, popular meds that turned out to be poisons). But most fads come and go fairly quickly once the risks of treatment become obvious and the over-promised benefits don’t pan out. As the excitement surrounding one fad wears off, suggestible clinicians and patients become enthusiastic about, and eagerly await, the next fad.

Cold Hard Psychiatric Facts about ADHD

Why The Explosion of ADHD Rates in Kids? We are in the midst of a 30-year fad of excessive diagnosis of childhood ADHD. Rates have tripled to about 10% — partly because DSM definitions have gotten looser — mostly because of aggressive Pharma marketing to MDs, parents, and teachers. How Do We Know That Rates of ADHD are Wildly Exaggerated in Kids? Studies done in a dozen countries on millions of kids have returned a remarkably consistent and disturbing result. All over the world, the best predictor of ADHD is the child’s birth date — the youngest kid in the class is almost twice as likely to get an ADHD diagnosis than the eldest. There is only one possible interpretation of this powerfully robust finding: ADHD is being wildly over diagnosed — we have turned simple immaturity into a mental disorder. Does ADHD Ever Occur in Adults? Yes, of course — because many kids don’t outgrow their ADHD symptoms once they become adults. The rate of persistent ADHD into adulthood varies widely across longitudinal studies — but probably about half the kids who have a childhood ADHD diagnosis continue to have clinically significant symptoms in adulthood. When the symptoms do persist, they usually become milder with age (especially true of hyperactivity). Can ADHD Ever Have Its Initial Onset in Adulthood? The simple and very important answer is an empathic NO! By definition, ADHD has to have its onset in childhood. This requirement is absolutely necessary in order to distinguish true ADHD from all the many other causes of inattention and hyperactivity in adulthood. Why Is ADHD So Often Overdiagnosed in Adults?
  1. Almost all mental disorders and almost all substance addictions can perfectly mimic ADHD since they can cause its two classic symptoms — hyperactivity and trouble focusing attention.
  2. Real or imagined attention problems are a very common complaint among perfectly normal people.
  3. Getting an ADHD diagnosis is a gateway to legal speed — desired for performance enhancement, all-nighters for school tests or work assignments, recreational purposes, or for sale into the extensive secondary ADHD pill market.
  4. Careless diagnosis and prescribing by MDs.
  5. An inevitable consequence of overdiagnosing ADHD in kids is overdiagnosing ADHD in adults.
  6. Promotion via drug companies and social networking.
What Are Current Reported Rates of ADHD in Adults? In general population surveys, the prevalence of current adult ADHD is reported to be 4.4% (males 5.4%; females 3.2%). Estimated lifetime prevalence of ADHD in U.S. (United States). adults aged 18 to 44 years is 8.1%. These numbers are absurdly high — reflecting the fatal flaws in the survey method. These rates are determined by casual telephone interviews done by non-clinicians. There is no careful differential diagnosis to rule out all the many causes of inattention and hyperactivity that should not be labeled ADHD, and to ensure symptoms are of clinically significant severity and duration. What is The Real Rate of ADHD in Kids? The best guide to the “real” rate of ADHD is the view of Keith Conners, considered to be the father of the ADHD diagnosis. He did the first studies on ADHD (even before there was an official DSM diagnosis called ADHD), and continued throughout his long career, until his death a few years ago, to do the best studies and have the most influence on the field. Keith believed the most appropriate rate of childhood ADHD would be about 2-3% and about half that number in adults — just a very small fraction of the inflated rates now reported. Risks Of Overdiagnosing ADHD in Adults:
  1. Meds used for ADHD are usually quite harmful if the person’s symptoms are due to another psychiatric disorder that has been missed — especially bipolar disorder, depression, schizophrenia, eating disorders, or anxiety disorder.
  2. Overdiagnosis of ADHD results in over-medication with drugs that cause harmful side effects and can lead to or worsen addiction.
  3. There is now a huge secondary market for ADHD meds, especially on college campuses.
  4. There is also a nationwide wide shortage of ADHD meds for patients who really need them — because the meds are so often prescribed for those who don’t or diverted to the illegal market.
Proper Differential Diagnosis of ADHD In Adults Before ever making a diagnosis of adult ADHD, there must be a careful evaluation that:
  1. Rules out the possibility symptoms are caused by another psychiatric disorder, substance use, drug side effect, head trauma, or another neurological or medical illness.
  2. Determines that the symptoms had their initial onset in childhood — adult onset of symptoms rules out ADHD.
  3. Ensure that symptoms are severe and persistent enough to cause clinically significant distress and impairment. Most people worry about their ability to focus — this is not sufficient evidence to diagnose mental disorder. Many people have transient episodes of inattention or hyperactivity due to everyday stress — this is also not adult ADHD.
  4. Consider the risk of malingering to get legal speed for performance enhancement, recreation, or resale.

Bottom Line

Most of what looks like adult ADHD is not adult ADHD. Distractibility is ubiquitous in the general population — most of it is normal; sometimes it’s caused by another psychiatric or medical problem or substance use. People who didn’t have ADHD symptoms in childhood should not be diagnosed with ADHD as adults. ADHD drugs are unsafe except when carefully used for accurately diagnosed ADHD. They are currently in short supply for appropriate use because they are so often used inappropriately. ADHD drugs are useful when appropriately prescribed for the few, but harmful when carelessly prescribed for the many. It is past time to stop the adult ADHD fad before it gains even more traction. The harm caused by the adult ADHD fad is great, both for the individual and society. Easy access to legal “speed” has created a large illegal secondary market of diverted pills. ADHD drugs have become the campus recreational drug of choice at parties and the performance-enhancement drug of choice for all-nighters during finals week. Legal speed can cause many medical and psychiatric adverse effects, and emergency room visits for complications are skyrocketing. The Drug Enforcement Agency and the FDA are now trying to contain the epidemic — but their efforts are too little/too late. The adult ADHD fad will be stopped only if clinicians and patients fight against its seduction and insist on more careful diagnosis and cautious treatment.

ChatGPT Asked the Same Question

[Editor’s Note] Once again, Dr. Frances’ granddaughter posed the same question to ChatGPT with the prompt: “What are the dangers of diagnosing ADHD in adults and how best to avoid them (in 500 words)?” “Diagnosing Attention-Deficit/Hyperactivity Disorder (ADHD) in adults comes with its own set of challenges and potential dangers that need to be carefully considered. While accurate diagnosis can provide individuals with the appropriate interventions and support, the risks associated with misdiagnosis or overdiagnosis are significant. To avoid these dangers, a comprehensive and cautious approach is crucial. Dangers of Diagnosing ADHD in Adults
  1. Misdiagnosis: ADHD symptoms can overlap with those of other mental health conditions such as anxiety, depression, or even medical conditions like thyroid disorders. Misdiagnosis can lead to inappropriate treatments and exacerbate underlying issues.
  2. Stigmatization: An incorrect diagnosis can lead to stigmatization, where individuals might feel labeled or misunderstood. This can negatively impact self-esteem and overall mental well-being.
  3. Overmedication: Misdiagnosis may result in the unnecessary prescription of stimulant medications, which are commonly used to treat ADHD. These medications can have side effects and may be harmful if taken without a valid reason.
  4. Self-Fulfilling Prophecy: Once diagnosed, individuals might attribute all their challenges solely to ADHD, overlooking other contributing factors and hindering personal growth and development.
  5. Masking Other Concerns: ADHD symptoms might overshadow coexisting conditions like learning disabilities, which require specific interventions. Treating only ADHD could leave these underlying issues unaddressed.
How to Avoid These Dangers
  1. Comprehensive Assessment: A thorough evaluation by a qualified mental health professional is essential. This should include a clinical interview, medical history review, and collateral information from family members or close associates to ensure a comprehensive understanding of the individual’s history and current challenges.
  2. Consider Differential Diagnosis: Since ADHD symptoms can mimic other conditions, it’s crucial to explore the possibility of comorbidities. This might involve additional assessments, screenings, or consultation with specialists.
  3. Longitudinal Perspective: Assessing symptoms over time helps differentiate between chronic ADHD-related impairments and situational factors that might be causing temporary difficulties.
  4. Multimodal Assessment: Utilize a combination of assessment tools, such as self-report questionnaires, cognitive tests, and behavioral observations, to gain a holistic view of an individual’s functioning.
  5. Functional Impairment: Focus on the degree to which symptoms interfere with daily functioning in various domains, including work, relationships, and personal responsibilities.
  6. Psychoeducation: Educate individuals about the diagnostic process, potential pitfalls, and the multifaceted nature of their difficulties to prevent over-identification with ADHD symptoms.
  7. Second Opinions: Encourage seeking a second opinion, especially if the diagnosis or recommended treatment plan feels uncertain or uncomfortable.
  8. Collaborative Decision-Making: Involve the individual in the diagnostic process and treatment planning. Discuss the potential benefits and drawbacks of medication, therapy, and lifestyle modifications to make informed choices.
  9. Holistic Approach: Address physical health, sleep patterns, stress management, and other factors that can impact attention and focus. Sometimes, lifestyle changes alone can lead to significant improvements.
  10. Regular Follow-ups: Periodically reevaluate the diagnosis and treatment plan to ensure they remain appropriate as the individual’s circumstances evolve.
In conclusion, diagnosing ADHD in adults requires a cautious and comprehensive approach to avoid the potential dangers associated with misdiagnosis or overdiagnosis. A multidimensional evaluation, consideration of differential diagnoses, and involving the individual in the diagnostic process are key strategies to ensure accurate diagnosis and promote the well-being of those seeking assistance for their difficulties.”

***

Afterword from Dr Frances

The response from Chat-GPT is remarkably good, especially considering that it took it one second to produce while my piece took 90 minutes to write. But ChatGPT did leave out two critical issues:
  1. The requirement that ADHD cannot, by definition, be diagnosed in adults unless symptoms were present in childhood and why this is so critical.
  2. The societal impact of the adult ADHD fad.
All in all, I think my piece is better than Chat’s – but not by much!

When Clients Ask, “What Do You Want for Me?”

Posted on by Psychotherapy.net Team

“What do you want?”

We therapists are constantly asking people some version of this basic question.

  • What are you wanting to be different?
  • What are your hopes for yourself?
  • This difficult circumstance being what it is (and beyond your control), what do you want to be able to do in the midst of it?
  • This difficult person being who they are (and beyond your control), how do you want to relate to them?
  • What needs to happen?
  • What do you want?
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And people respond:
  • I want to feel less depressed.
  • I want to leave my marriage.
  • I want to stop drinking.
  • I want to feel happy.
  • I want to feel more connected to others.
  • I want to be less reactive and controlling.

Therapists Must Listen for What Clients Really Want


These answers become the guiding force that frames and energizes our work together. And as therapy progresses, and we keep asking “what do you want?” the answers and the focus of our work shift and deepen. “I want to feel happy” becomes “I want to interrupt my ingrained habit of always looking for what’s wrong.” “I want to feel more connected to others” becomes “I want to feel more connected with myself.” Or, “I want to be less reactive and controlling” becomes “I want to learn what it takes, and do what it takes, to feel safe in the world.” And beneath all these answers, beneath the “what do you want?” question itself, is one of the deepest questions of all: “What’s worth wanting?”

So, we keep asking, over and over, “What do you want?” And following our clients deeper and deeper.

Recently, a client turned the question back on me. I’d asked her some version of the question, and she’d responded with a thoughtful litany of hopes for herself and her life. But then she paused, tilted her head, and asked, “What do you want for me?”

Sometimes, of course, people ask therapists (and others) to guide and direct their lives because they lack confidence in their own inner compass. Perhaps they grew up with parents who sheltered them or micromanaged them, and they weren’t given space to grow that confidence. Or perhaps they entered adulthood trusting themselves, but a lot of things have gone wrong, and they’ve come to doubt themselves.

We therapists are careful about giving advice for lots of reasons, but this is one of the main ones: we don’t want, in an effort to help someone through a hard moment in their lives, to send a meta-message that we believe they can’t think and judge and make good choices for themselves. Quite the opposite: we want to respect and nourish people’s trust in themselves, their power to know what’s needed, and their capacity to choose and to act.

This woman, however, had demonstrated these abilities many times, in session and out. She was insightful, intuitive, and brave. So, I did not hear her question, “What do you want for me?” as a flight from responsibility: “Tell me what to do.” I heard it as healthy curiosity: “Tell me how you carry me in your heart.”

And so, I paused, took a breath, listened inside, and said to her: “I want you to be happy and powerful.”

I paused again, to see what else might be there. And I’ll pause with you, too, to say that, by “powerful,” I don’t mean CEO powerful or politician powerful. I mean the ability to gather and concentrate our energy, to plug the leaks that dilute us, and live from a strong and regulated stream of force.

I continued: “I want you to be faithful to who you are and what you know. So many people, you included, have been gaslit — by their parents, by friends, by their employer, by religion, by advertisers — and end up not able to trust themselves and their inner GPS. I want you to be a deep witness to the truth of yourself and your experience, to hear what your mind knows and, even more, what your body knows and what your intuition knows. And I want you to be able to live from all that.”

That was all. I paused and gave her space to absorb what I’d said and, if she wanted, to say how it had landed in her. She looked at me quietly, and I imagined she was doing exactly what I’d just said — listening to herself, weighing the truth of my words against the truth of her own knowing, and welcoming whatever she found trustworthy.

Then she said, “Thank you. I like that.”

And I said back, “Thank you. I like it, too.”

What I liked was twofold. It was, firstly, the experience of connecting with her, which I found deeply nourishing. And secondly, it was the sense I had that, spontaneously and concisely, I’d just articulated my view of what I hope happens for people who talk with me in therapy. I’m hoping they will grow in consciousness and in power. I want to help people witness the truth of their life — their outer life and their inner life — and, based on what they witness, to exercise agency, freedom, and choice.

I’ll close by asking you, therapist or whoever else you are, when it comes to the people you care for, what do you want for them?  

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

Posted on by Psychotherapy.net Team

Acknowledgements

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

Ko Ben Lomond t?ku maunga

Ko Loch Lomond t?ku moana

Ko McAllum t?ku iwi

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

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

Ko James Copeland t?ku t?puna

Ko Hamish McAllum t?ku p?pa

Ko Jan Hutchison t?ku m?ma

Ko Gavin Pilkington t?ku tane purotu

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

Ko Sasha McAllum Pilkington t?ku ingoa

No reira t?na koutou, t?na koutou

Kia ora t?tou k?toa

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

An Unexpected Beginning (1)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Sure am.” Louise nodded.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“I went white.”

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

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

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

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

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

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

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

Louise waited, her body tense and alert.

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

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

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

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

Louise enthused about her garden.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“All my friends!” Louise responded enthusiastically.

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

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

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

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

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

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

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

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

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

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

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

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

Postscript

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

Notes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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