Thousands of people experience traumatic brain injury (TBI) in Australia every year and TBI is a significant cause of disability worldwide (Trevena & Cameron, 2011). Some people adjust to their permanently disabling injury and ‘get on with their lives’. Likewise many carers (and the majority are women), despite the loss of their pre-trauma life, adjust their focus and care effectively long-term even when the demanding nature of their caring is largely unrecognised. Despite adjustment and twenty-four/seven coping by resilient people, others succumb and find that even through their best efforts they cannot cope. Then for these carers and people with TBI, illness, isolation, anxiety, depression, family breakup and tragically sometimes suicide follow.
After 25 years working with individuals who have experienced brain injury, the author has recently published a collection of stories of resilience, aimed at providing insight into the courage and tenacity of these people and their carers. Some of these stories are touched on in this article to aid discussion of the characteristics of resilience, whether resilient people can avoid the additional psychological tragedies that are often associated with TBI, and how the psychological needs of people with TBI can be nurtured to enhance such resilience.
What is resilience?
According to Newman (2005) resilience is the ability to adapt when faced with tragedy, trauma, adversity, hardship and continuous significant life stressors. A survivor of a traumatic brain injury comments that despite intense physical and emotional reactions, including deep sadness, “when the real self is nurtured and comes forth it will master and triumph”. But no two people or families respond in the same way and for everyone a traumatic brain injury is a life changer. Another person comments that “following serious brain injury because we never know what to expect then too often we can lose control and go under”. It is however far too simple to depict the first person ”who triumphs” as resilient, and the second as “going under” and therefore not having resilient behaviours. The picture is always complex.
Resilience in the context of traumatic brain injury is about effective coping (Rees, 2011). Despite trauma and hardship, resilient people sustain positive outcomes across a number of aspects of their life. Such a person is the mother living in a small country town with few if any rehabilitation services, who for over twenty years as a sole parent has cared for her severely brain injured dependent son. Following his motor cycle accident she experienced the departure of a partner, loss of friends, considerable loss of income and social isolation. Yet she rarely if ever broods over her loss although she grieves for her son and the effects of his severe disability. “I grieve for what could have been a full and promising life,” she says. She lives life day by day and maintains that whatever happens she finds contentment in that. Irrespective of what life has handed out she invests in being content. For Wynhausen (2009) this mother has been “primed to be resilient”. The fact that mother and son get on with their life is a tribute to her irrepressible ingeniousness and enterprise. Alone at home with her son the past is of little interest to her, it is the future; tomorrow, the coming weekend, next week and what they might do on a holiday trip which interests her. She knows how to celebrate time alone (Fisher, 2007). Caring for her son she regards as meaningful and rewarding. She plans, improvises and is a fine example of fortitude in the face of adversity.
The slowness of time is unrelenting for someone who expects nothing. A young man with a severe brain injury who lives alone says that there is nothing more bitter than starting a day when nothing will happen. “Then,” he says, “I wonder whether it is worth the sun rising.” If he doesn’t have activities organised for each day, then he believes that tomorrow will return and it will be like yesterday and nothing will ever happen. Due to severe frontal lobe damage his resilience and coping is dependent on day-to-day external input often provided by a paid mentor.
Characteristics of resilience
The psychological literature identifies a wide range of behaviours characteristic of resilience (Mohan 2010). Significant among them are: a capacity for close relationship; the ability to be proactive and get things done; having positive expectations; valuing one’s own independence and autonomy; being or becoming effective problem solvers; and despite tragic situations, the ability to enjoy laughter and respond to humour. Also, resilient people are considered to experience lower levels of fear and anxiety in situations outside their control (Masten & Coatsworth, 1995). Irrespective of threatening situations, such as memory loss, being socially confused and isolated, they remain optimistic. Interventions which help them lower their fear and anxiety include cognitive behaviour therapy (Lam & Cheng, 2001).
Epic resistance to tragedy provides glimpses of the vitality that underpins resilience. There is the man severely injured in a steel fabrication plant accident who, despite extensive and deep fractures to his skull, extensive cranial nerve damage, loss of hearing and vision in one eye followed by seven months in a deep coma and five years in a nursing home with few if any signs of recovery, eventually leaves the nursing home for cranial facial reconstruction and then moves to live independently and rebuild his life. He expected that “each day could be better than the next”. He has few if any negative emotions. He keeps going, which is considered to be “the objective correlative of resilience” (Wynhausen, 2009, p. 50).
Ingenuity and enterprise characterise resilient behaviour. There is the man who strings word flags across rooms in his flat to help remind himself of language he has lost following an assault, or the young man who over many years develops an external memory aid by careful recording and use of his diary when his fluent short term memory is lost almost completely. These traumatically brain injured young men still demonstrate ingenuity and enterprise. With sustained mentor support they develop a fend-for-yourself attitude. Yet life for them is still punishing and exhausting and often “hell on earth”.
Nurturing resilience
From a social point of view the effects of severe brain injury mean that such injured people do not work again, have lost partners, and often have lost access to their children. From a psychological point of view they have severe memory and communication difficulties, experience anxiety and depression, and alone are rarely effective problem solvers. Interventions which help nurture resilient behaviours for these people include assisting them to:
- Know that rewarding social and recreational activities or meetings will occur, ‘this afternoon, tomorrow, at the weekend and/or the following week’. This is an expectation which has to be arranged in conjunction with the person with TBI and sustained long term.
- Plan work experience options so that if possible a transition to part- or full-time work can follow.
- Have an anchor person who is a constant in their lives. This constant person solves problems and is readily available; is often a psychologist or counsellor who becomes a trusted friend, and who knows what the brain injured person ‘said and did yesterday’.
- Have opportunities for regular professional consultation even when life is going well. Only spending time with a psychologist when a crisis occurs (as it inevitably does) is no way to help the person develop resilience – consultation has to be ongoing often over many years so that crises, which can crush even the most resilient, can be anticipated and solved before they become insurmountable.
- Use language about their situation which is always positive. The aim here is for positive language to be modelled so that gradually the person with brain injury adopts this repertoire. It is language which is tender, holds out hope and makes use of humour...’providing witty solutions to communication difficulties’.
- Have a substantial network with a focus on peer support (Rees, 2005). This has been considered a strong predictor of adjustment and coping. It is a network which at its core has an ongoing activities program.
- Engage in demanding cognitive activities such as writing and communication skills workshops and self-directed learning in socially supportive contexts such as a university campus. These activities aid self esteem reconstruction and skill development (Rees & Wilson, 2001; Robertson, 1999).
- Experience, as and when required, opportunities for close and intimate sexual relationships. People with TBI consider that this is the way of autonomy. The home or program that provides the opportunity for the person to experience a sexual relationship, hopefully within the boundaries of a steady relationship, is one that fosters autonomy and resilient behaviours.
Conclusion
Life changing events such as a TBI are interpreted by families in light of the array of events and relationships in which they are embedded and the family history that precedes them. Our experience is that despite disabling brain injury, families who are cohesive and communicative, particularly with regard to emotions, and who maintain predictable routines in which carers are consistent and warm in their interactions, create an environment in which people with TBI feel cared for, valued and safe. Contexts that engender feelings of security and belonging can reduce the perception of environments which threaten and in turn – despite the enormous tragedy of TBI – form a basis for the development of resilient behaviours.
Despite their often multiple disabilities, people with brain injury still have three basic psychological needs: relatedness, opportunity to develop competence and skills, and, even with total or partial support, autonomy. When social contexts support and guarantee that these psychological needs will be met, then people with TBI and their carers are much more likely to develop and sustain resilient behaviours. But the task is huge and psychologists are only just beginning to realise its enormity as well as our long-term professional responsibility.
The author can be contacted at [email protected]