Lessons from my mother: Psychological flexibility and the state of ‘grace’. – Dr. Ian Tyndall, Department of Psychology, University of Chichester, UK
My mother died in April 2016 after the most courageous two-and-a-half year battle with cancer. She was just 59. Travelling that journey with her taught me more about the Acceptance and Commitment Therapy (ACT) model of human suffering than all of the articles and books I have read, and the conference presentations and workshops I have attended over the years.
From what I have witnessed, I do not believe that Positive Psychology is a particularly helpful theoretical position to adopt for coping with cancer, or more specifically, when the cancer is labelled as probably terminal. At the beginning, after the initial diagnosis in December 2013, we were provided with a large body of literature (mostly leaflets though in reality) that emphasised the role of positive thinking. This relentless drive to have or deliberately try to experience positive thoughts as a way to cope with and defeat cancer is unnatural. Cancer, is quite simply, an awful experience, although I do acknowledge of course that some types are obviously worse and more painful than others. If one is lucky enough to come through the other side, there may be scope for a positive reflection on how it changed a person’s perspective or helped them re-focus on what is important in life (their values). However, at the time of diagnosis and subsequent treatment, this drive for positivity and purposeful suppression of negative thoughts just goes against true healing and acceptance, which involves experiencing the negative feelings, thoughts, and emotions in full. It may also lead a patient to think there is something ‘wrong’ with them if they are not experiencing positive thoughts despite their constant pain, nausea, and suffering. That positive perspective can also lead to making false assumptions that people we love and who succumbed to death from cancer did not have a ‘positive enough’ or ‘sufficiently positive’ mind frame to overcome it in comparison to others who might have done so. It might also lead to perceptions that the person who died somehow did not fight hard enough. The person who died wanted to live on just as much as the person who survived.
Psychological flexibility and psychological inflexibility underpin the Acceptance and Commitment Therapy model. Psychological inflexibility is characterised by experiential avoidance, cognitive defusion, self-as-context, present moment awareness, values, and commitment to action. On the other hand, the six core components of psychological inflexibility are acceptance, cognitive fusion, self-as-content, lack of present-moment awareness, lack of values, and inaction. A central assumption of ACT is that much psychological suffering and distress is underpinned by a transdiagnostic process known as experiential avoidance. Experiential avoidance is behaviour that attempts to “alter the frequency or form of unwanted private events, including thoughts, memories, and bodily sensations, even when doing so causes personal harm”. Experiential avoidance may incorporate deliberate internal (covert) suppressing of negative thoughts or distracting oneself from negative feelings or it might also encapsulate a rigid tendency to engage in observable (overt) behavioural patterns or tendencies such as drinking too much alcohol, eating excessive amounts of junk food, or self-harm such as self-injuring, in order to try to block out, suppress, or avoid the unwanted emotion, feeling, or thoughts. Experiential avoidance seems like a perfectly intuitive and common sense thing to do. If something upsets you, it seems reasonable to do what you have to do to avoid experiencing it. After all, it is aversive. Hayes et al. (1996) outlined that experiential avoidance was a cardinal aspect of many psychological problems or disorders. The opposite of experiential avoidance is acceptance. Within the context of cancer, it was when my mother started speaking the language of acceptance that she entered the closest thing I have ever seen to a ‘state of grace’. It was not that she did not want to live, she was only in her 50s and was a very vibrant and life-loving woman, and most certainly did but she said that she did not fear dying herself. Rather, what she was worried about was leaving her children and grandchildren behind and whether we would all be ok without her. Around this time, there was a real glow about her (despite the chemotherapy and radiotherapy), and despite the crushing setback when the cancer came back from supposed remission after just 6 weeks (there is some grain of truth to the saying that ‘it’s the hope that kills you’). She had originally fought hard and did everything that she was told to by the various nurses, doctors and oncologists (many who used the phrase ‘we’re going to beat this’ in my presence), but it was on a walk together (on one of those rarer occasions when she was physically able to) on a late autumn’s evening when the low light through the trees as the sun goes down has a particularly warm and special glow that there seemed a serene presence to her, as her mindset changed. She never gave up fighting in that sense, but no longer avoided talk of death or the future or expressed worry for herself; rather only concern for others, and just embodied acceptance. Acceptance does not mean giving up, once she reached this stage she survived two more years at least than her initial prognosis with her oncology professor predicted. During this stage she did not engage in the ‘why me?’ game or blame anyone else for her own life choices that may have contributed to her developing the disease so young (whereas plenty of others did). It was this acceptance and focus on her values in life (her family), that motivated her to defy the odds and fly from Ireland to England to meet her newest grandson, despite the fact that she could barely walk and only had weeks to live. Acceptance sounds easy but it is far from it.
Purely anecdotally, experiential avoidance appears one of the key differences in how we coped as a family through this very difficult time. Those who took the longest to accept the reality of the terminal nature of the disease and were most overtly vocal in saying that it was not happening or it would be defeated have seemingly had the most difficult and prolonged grieving period. This is not to say that those who engaged in acceptance earlier suffered less or loved less or grieved less. It just means that they were more prepared for the grief to come and could focus on spending quality time when it was still possible. Grief is not really something that fades, even though it is somewhat true that time is a great healer. As a behavioural psychologist I do not believe that ‘recovery’ is possible in that you recover exactly who you were before the terrible event happened (e.g., losing a parent), as you are quite simply a changed person because of it. This does not mean it is all doom and gloom though, just simply that you are now a different person shaped by life’s experiences itself. Grief is something you live with every day as each new day you still have to learn to live life without the person who loved you the most and were your biggest champion.
Cancer is an incredibly difficult fight that will touch most of us and our families at some point. The treatments are horrible, and to put it mildly, industrial as they typically involve combinations of ingesting poisons and zapping us with radio waves. ACT has a concept referred to as cognitive defusion where the stimulus functions (essentially its meaning) of a, usually unpleasant or painful, word tend to fade away and you experience just the word or the sound of the word itself. In essence, it’s meaning is stripped away, if only briefly. One particular cognitive defusion exercise known as the word-repetition technique, is deceptively simple in that it involves the client distilling their fear or anxiety or sadness, for example, into a single word (e.g., ‘I am a failure’ is distilled to ‘failure’) and they repeat the word over and over again for a period of usually 30 or 60 seconds. The denotations and connotations of the word tend to quickly dissipate in that the unpleasant or uncomfortable stimulus functions (e.g., associations) that the word failure typically elicit (e.g., ‘helplessness’, ‘unworthiness’, ‘feelings of panic’, ‘feelings of shame’) for that person seem psychologically distant, at least temporarily. This can be useful for clients presenting with specific psychological issues such as fear of public speaking. In the case of cancer treatment, and more specifically, chemotherapy, when we shorten the term to ‘chemo’ and bandy it about very loosely in conversation it tends to have the effect of cognitively defusing or diminishing the quite awful stimulus functions of chemotherapy (e.g., constant nausea, loss of appetite, hair loss, sleeplessness). This might be useful for the cancer patient, but it also unfortunately seems to somewhat reduce the sympathy and support for the cancer sufferer by others as when they utter the word ‘chemo’ it is almost as if the awfulness of it is stripped away and it is merely on a par with other less aversive treatments for less serious illnesses (e.g., a course of steroids or antibiotics). When health professionals and family members/friends use the word ‘chemotherapy’ in full the horrendous functions (e.g., side effects) of the treatment and what the cancer patient has to go through are more psychologically ‘present’ and apparent, and I think leads to a more compassionate response and supportive behaviour.
On Irish national television, there is a series that is essentially a set of interviews with notable figures in Irish life, most particularly in the arts and politics, with the title ‘The Meaning of Life’. It certainly varies in quality to say the least, and is viewed by some, probably quite rightly, as mere filler television as it is cheap to make and is just there to fill a gap in the programming schedule. Within the mire though, there are some occasional gems. When Seamus Heaney, the Nobel prize for Literature winner in 1995, was asked what lesson would he pass on to people as he was nearing the end of his life, he paused for a moment and smiled and said ‘Be kind’. Some people I was talking to were disappointed as they wanted or expected to hear something more profound on the essence or absolute meaning of life to come from one of our greatest writers but to me it is still a profound statement with great wisdom. ACT (and relational frame theory) places enormous emphasis on the development of perspective-taking skills. I think it is profound because most of our deepest thinkers seem to converge on that theme despite a lifetime of mulling over what appear on the surface to be complex concepts and principles and engaging in often fraught and unpleasant intellectual jousting with scholarly colleagues and academic rivals over the years. For example, a book and video clip I regularly return to since I first came across it as a teenager in Ireland in the mid-1990s is the astronomer Carl Sagan’s Pale Blue Dot. I was pleasantly surprised to see that Dr. Lisa Coyne of the McLean Centre for Children and Adolescents with Obsessive-Compulsive Disorder at Harvard Medical School decided to include this in her powerful keynote speech at the Association for Contextual Behavioural Science World Conference in Montreal this past July. To watch the clip is a remarkable perspective-taking exercise as it focuses on a photo earth taken from the Voyager II in 1990 and underscores the necessity to be kind to ourselves, each other, and the planet.
Here is part of that script: ‘Look again at that dot. That’s here. That’s home. That’s us. On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives. The aggregate of our joy and suffering, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, hopeful child, inventor and explorer, every teacher of morals, every corrupt politician, every “superstar,” every “supreme leader,” every saint and sinner in the history of our species lived there–on a mote of dust suspended in a sunbeam.
The Earth is a very small stage in a vast cosmic arena. Think of the rivers of blood spilled by all those generals and emperors so that, in glory and triumph, they could become the momentary masters of a fraction of a dot. Think of the endless cruelties visited by the inhabitants of one corner of this pixel on the scarcely distinguishable inhabitants of some other corner, how frequent their misunderstandings, how eager they are to kill one another, how fervent their hatreds.
Our posturings, our imagined self-importance, the delusion that we have some privileged position in the Universe, are challenged by this point of pale light. Our planet is a lonely speck in the great enveloping cosmic dark. In our obscurity, in all this vastness, there is no hint that help will come from elsewhere to save us from ourselves.
It has been said that astronomy is a humbling and character-building experience. There is perhaps no better demonstration of the folly of human conceits than this distant image of our tiny world. To me, it underscores our responsibility to deal more kindly with one another, and to preserve and cherish the pale blue dot, the only home we’ve ever known’
This commitment to kindness to others seems easy in practice. It is certainly very easy to say, but more difficult to do or show. Most religious doctrines focus on something like ‘treat your neighbour as you would wish to be treated yourself’ as a key guiding goal or mantra. Yet, in some Christian denominations (e.g., Catholicism) there is a ritual during the church service that you are asked to turn to the person (often a stranger) beside you and offer your hand and wish them peace. It is somewhat surprising that this, which is technically the most Christian part of the service, is usually the part that patrons claim is the one they dislike the most or feel most discomfort with. It is challenging to treat others the way you would like them to treat you. Similarly, there is a classic idea that those patrons who always insist on taking their seat in the first few pews of the church are often the least Christian on the outside (e.g., in how they treat the poor, the homeless, the most vulnerable in their community). In a similar way, practising psychological flexibility is difficult as it is effortful and often counter-intuitive to engage in acceptance, cognitive defusion, and focusing on what your values are, for example. It is something that needs to be practised regularly for it to become habit. But even so, many leaders within the psychological flexibility movement have shown many instances of rigid, rule-governed, inflexible behaviour so, like Christianity, it is not a simple matter of practice what you preach. It is something that is ongoing and needs to be monitored regularly. However, the gifts of acceptance and psychological flexibility are manifold. Like with my mother, it allowed to refocus her attention away from the pain, nausea, hair loss, metallic tasting food, and fear, towards what she valued in her life – her family, others, and kindness. Despite never having studied it herself, and me spending part of my career researching it, she was the one teaching me about psychological flexibility and was the bravest person I ever met.
As Carl Sagan said, we should engage in kindness to each other and cherish the planet. This is very true, but we should not forget to cherish those who love us. Despite having possibly hundreds or even thousands of friends, or followers, on Facebook, Instagram, or Twitter, there are only a handful of people in our lives who love us unconditionally and whose lives are devastated or seemingly ‘ruined’ when we die. Cherish them. As the priest who came to our house before the funeral said while looking at my mother in the open coffin “Ian, I don’t bury too many people in their 50s anymore”.