A Long Goodbye and a Slow Hello


A Long Goodbye And A Slow Hello *:

Dealing with loss and finding new meaning after an Acquired Brain Injury –
a talk given to the Stroke Support Group, Pretoria on 1 July 2014.

By Sunica Schreiner, Clinical Psychologist, Community Service, Eersterust Community Health Clinic,
Gauteng Department of Health, Tshwane Region.

“Who are YOU?” (said the Caterpillar) ... Alice replied, rather shyly, “I—I hardly know, sir, just at present—at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.”

(Alice in Wonderland – Lewis Carroll)

* Title indebted to Meghan O’Rourke’s book The long Goodbye, a memoir.

This talk is about grieving and the process of mourning. And how what we assume of this process when we consider coming to terms with life after an Acquired Brain Injury; may set us up for failure. How what we think we should feel may be constructed by the expectations of others. The process after ABI is unique and marked by a slow move towards finding new meaning.

Just to jog our memories ABI refers to Acquired Brain Injury that subsumes as an umbrella term all injuries to the brain after birth and excludes neurodegenerative disorders such as dementia under which Alzheimer is most probably the most well-known.

Now the thinking behind this talk was the email discussion with Lindsay about the needs of the group. Initially Lindsay suggested that anything goes but later did imply that trauma might be worth looking at.

And what is trauma? In brain injury trauma can refer to the Actual Injury albeit traumatic such as an accident or non-traumatic as in the case of a stroke. It can refer to the primary site of trauma – whether there was an open wound or whether the injury was without penetration, injury on the opposite side of the site of trauma due to shaking of the brain inside the skull and tearing of neurons; or to secondary trauma where consequent neuron death due to the links around the primary site being injured. But I am sure you know all of this.

Yet this is not where it stops in brain injury. This is what Jill Taylor famed neuroscientist said about her own experience waking up from her stroke:

With my mind stripped of its ability to recall the memories and details of my previous life, it was clear to me that I was like an infant – born into an adult woman’s body. And oh yes, the brain wasn’t working.

In silent prayer, I reflected, I am not supposed to be here any more! I let go! My energy shifted and the essence of my being escaped. This is not right. [...]The fragile mind of this organic container has shut down and is no longer amenable for intelligent occupancy! I don’t belong here any more! [66]

These quotes from her book My Stroke of Insight, summarize just the beginnings of the second aspect of trauma accompanying ABI: Psychological Trauma resulting in the process of grieving.

A very basic definition of psychological trauma can read as a type of wound or damage to a person’s psyche that occurs as a result of a severely distressing event. In Greek, trauma, means wound. Such trauma is often as a result of an overwhelming amount of stress that exceeds one’s ability to cope or integrate the emotions involved with that experience. The reaction to trauma is highly individual and differs from person to person.

Now psychological trauma accompanying ABI is usually considered as the trauma around the actual event albeit the actual physical shock of the stroke, car accident or fall in addition to the infringement of the individual’s integrity in the hospital setting as well as the inability to at times communicate but possibly being aware of what is happening; guilt around for instance, driving the car that caused the accident, or anger towards those that drove the car, as well as adjusting to the neurological consequences of the injury.

These neurological injuries in a few words, and not doing justice to their impact can include physiological difficulties including movement and sensory difficulties; difficulty in cognition or thinking (the way we handle information from the world around us specifically the processes not unlike that of a computer of receiving, remembering, reorganizing and processing information) and the way our thinking processes are expressed or communicated in real life through our own behaviour, speech and non-verbal communication. And finally the way we make sense of our social world and operate in our world could also be affected. Now participating and attending to conversation may be difficult and social situations may be overwhelming. This may lead to withdrawing from social engagements. And in turn, to loneliness and social isolation.

These neurologically based difficulties can occur in different periods after brain injury and inform the psychological traumatic reaction and the experience of grief. Grief further implies loss: loss of a loved one, loss of a relationship or something with which a bond was formed. In ABI this loss can be considered around identity and the person that was.

How could I still be Dr. Jill Bolte Taylor, when I no longer shared her life experiences, thoughts and emotional attachments? [67]

And here I am reminded of author John Updike’s words in his memoir Self Consciousness – and

these are not unlike Alice’s mentioned at the beginning of this talk:

Each day, we wake slightly altered, and the person we were yesterday is dead. So why, one could say, be afraid of death, when death comes all the time?

After ABI the yesterday seems to die in a certain way and the process of saying goodbye to the loss is a slow one with nothing preparing the person for such a loss. With each day the loss remains a constant companion: a constant shadow etching of the outlines of the spaces where once there was a different self.

This constancy defines the difference though between normal grief . ABI Grief and could I call it Normal Grief. For me Freud is very accurate in his hypothesis that in grief and the process of mourning the external world is experienced as diminished in an important way for instance through the loss of a loved one. But for Freud when what feels lost or damaged is a part of the self – the loss of a bond with the old self, then for him we deal with feelings equal to those of relentless depression. Based on this hypothesis one wonders if depression after brain injury is not a form of permanent mourning, instead of a mental disorder?

It is therefore not surprising that depression is so very prominent after ABI with some evidence based experiencing this. sources reporting that most, if not It may even become part of who one is. all, survivors The experience of depression is also in part due to some neurobiological and biochemical changes after the physical trauma but also in addition to the loss and the biology, maintained by social experiences. How come?

Our culture treats grief with a very rational prescription: Society seems to operate by a set of unspoken shoulds for how we “ought-to” feel and behave in the face of sorrow and sadness. We hear snap out of it, you are upsetting the kids, by now you should feel better. ACCEPT ACCEPT ACCEPT!! But what if you cannot at that point? Or ever, according to their terms? Then inevitably we shut down emotionally and experience a disconnect between our emotions and our daily lives. We carry on and push away the undealt with emotions. Rather this and experiencing any form of rejection because at the base of the human condition lies the need for connection. And in any case – there is no culturally sanctioned process for the loss after brain injury – no obituary in the newspaper and no gravestone, and so we are at al loss without a game-plan or template for this type of mourning. And what if we remain stuck in the process of tending to the wound for too long?

Nevertheless to exactly become unstuck and steer away from being immobilized it is important to slowly say goodbye to that which defined the old self and gradually move towards integrating a new level of being and functioning. In this it is vitally important to connect with the emotions and mourn. This is called awareness. Awareness of how you are different yes, how you feel, yes. This is an important process, but highly personal to the individual and her/his family and friends. But how to do this?

First Forget the idea of 5 stages of grief coined by Kubler Ross(1969). These stages do not apply to ABI as the model was developed for terminally ill patients. Instead consider the following graph may be considered more appropriate to ABI individuals:

So how does this translate to assisting in the process of mourning after an ABI?

Grieve – accept that you may grieve, allow yourself to grieve the person you once were. It is never too late to complete this process. Erect the gravestone, place the flowers, show pictures, writing an essay or obituary as you would a family member or friend; have a proper wake. The important thing is to stay with the emotions and validate them as necessary to who you are – trying not push them aside, they are there for a purpose – they protect and heal. They are yours and make you you. Set time aside to commemorate your loss. Celebrate your anger. Experience the acute nostalgia. The longing for the old self. You are allowed to experience feelings of disillusionment in your beliefs. And you are allowed to question.

Acknowledge and Recognize the changed you and the self. Note I do not say accept. That is up to you. Whoever said acceptance is a scientific fact? No let’s move rather to the reconstruction of meaning and what is termed Loss Adaptation or Coping (referring to the process of adjusting to loss and grief) You most probably will experience a lowered sense of self-worth and self-concept especially in the face of the frustration in the face of the neurocognitive and other challenges. Expect it, see it when it comes, it is part of the process.

In acknowledging we should consider the following: the self could be seen as the real self and the capacities of the self. The real self develops only well into adulthood and changes beyond and is gained through the feedback on our “selves” we get from our work, our family and social relationships. Your capacities are for instance being good at your job, your talents. These feed into the creation of self and gives definition.

If a brain injury occurs early on when the self and the capacities are just developing the loss is less acutely felt but mourning for that which could have been is intensely experienced. The group affected most by a loss of self are adolescents as they are acquiring a sense of self, but have not yet mastered capacities of self. Thus for them the possibility of developing the real and capacity of self in tandem is flouted and the task of integration possibly more complicated.

Based on the real and the capacities of self it is clear that it is important to Reach out Interpersonally. But this is not always easy as interpersonal relationships after brain injury are strained by the neurological challenges and that these challenges link to interpersonal disengagement. This disengagement, often self- imposed can have dire outcome for the person with a brain injury. This is because without feedback your most basic need for human connection is flouted. So even if tough, try and reach out, to those you feel safe with and then venture further. This is vital, creating a sense of self.

In addition, close and supportive relationships contribute to more positive outcomes and more positive outcomes contribute in turn to closer interpersonal relationships. This is as the brain structures implicated in emotions are stimulated by interpersonal engagement and when stimulated counters depressive symptoms and facilitates thinking. And practice empathy for others. Get into their shoes. This facilitates even more closeness. Ideas for reaching out could be in groups like this, church support organizations, sport activities and so forth.

But also, Work On Capacity – get the feedback that you are doing what you can with your new self; look at hobbies for instance; pick up a brush, clay, a book. it really matter if what you do is not perfect? Does From what we know about the brain, new neural networks are constantly laid down through experience. So go out and experience new things and lay down those networks.

Practice Mindfulness . This technique involves focusing attention on what you are experiencing moment to moment. This is especially useful when you have to cope at certain times and you feel as if your mind is so fragmented with thoughts of the past, fears, worries about the future and the experience of loss. Just try and remain fully alert in the experiences of the present moment. You can do this when you are sitting quietly or doing activities. Just come back to yourself – feel your breath. This helps to anchor you in the moment. When rooted, become aware of the sensations in your body, your emotions (be with them, they are important), thoughts, actions of the present moment.

Eventually Loss Adaptation or Coping with life after injury, a life of adjustment will occur. During this coping certain strategies can be utilized:

  • Affective/Emotional Strategies where we vent our emotions honestly in groups such as this to feel more in control. The opposite negative affective strategy: overly regulating our emotions especially if we feel that our environment is out of control.

  • Cognitive/Thinking Strategies where we look for information, restructure our belief systems realizing that our emotions at times, our reactions are more closely linked to what we believe about something than what really is. Thus reducing such talk as “should, ought to and supposed to.” Reframing “supposed to to I would like to.” Negative cognitive strategy: denying or avoiding.

  • Behavioural Strategies where we engage in the social activities, hobbies and problem solving. Negative behavioural strategy: Acting out behaviours.

  • Spiritual strategies where we try to make sense through prayer and meditation and religion.

So the Goal may rather be towards: integrating the past and the present self as not an either or but a mix of both; realizing the skills that you have, making lists of your priorities, recognizing the loss and coping with it the best you can, validating your feelings; developing new roles as these can redefine you and create purpose!!!

Thank you for listening.


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