Author: Anne Ricketts
When the roots of any living thing are shattered, the life and energy of the organism come crashing down. However, what we must remember is that “energy cannot be created or destroyed it can only be changed from one form to another.” Albert Einstein
Following a brain injury, a life-shattering experience, I believe our DNA holds us together. The structure of who we are wants to thrive, and if we support the natural drive to heal, we can eventually create a greater version of the original ‘who am I?’ blueprint.
If we consider that the potential of the emerging self has been in motion since before birth, then we can picture this momentum as a continuing force which endures during and beyond any trauma. The self ‘breathes’ and fluctuates in synchrony with our responses to life events. We stand tall, withdraw to regroup, pick ourselves up, and dust ourselves off in a natural rhythm recognisable to everyone. This rhythm continues after brain injury but tends to be jagged, with peaks elevated above the norms and troughs which disappear into a bottomless abyss.
Many people, particularly those who maintain insight following a brain injury, see an end to the original ‘self’ or life and the beginning of another. However, experience is a form of energy, and it continues to flow irrespective of the interpretation of feeling. The frequency at which this energy vibrates alters, but it is still the same life force of the original self. The ‘material life’ changes rather than one version of a person dying and a new one being born. The innate self remains beneath the surface of thinking and skills impairment.
The benefit of retaining insight is that an individual may utilise the knowledge of who they are to support decision making, which, while hampered by thinking and executive deficits, might otherwise have led to many brutal errors of judgement. However, the retention of insight is just as much a burden as a blessing. The psychological turmoil so often suffered over long periods can easily hinder sound decision making.
This retention of the original self is evident in the impetus behind the habitual response to any stimuli. However, because the autopilot fails to consider the vast wealth of personal beliefs, preferences, values, ethics and desire, to name a few aspects of unique complex data, what emits or comes out is far removed from the intention or what someone may imagine happened.
Although the changes a brain injury brings should be noticeable and obvious, especially to a familial or professional observer, people often become caught by automatic and swift judgement. When any resulting false conclusions persist, inadvertent and often profound emotional and psychological wounds and damage can occur. Therefore, understanding the outcomes and consequences of a brain injury is imperative at the earliest stage possible. There are excellent resources available to assist in this process, such as Family Experience of Brain Injury, Jo Clark-Wison and Mark Holloway.
A new research study, ‘Heads Together,’ aims to add many new support systems and resources to prevent people from falling through the gaps in current services. The initiative aspires to provide ‘scaffolding’ around the fragility of the lived experience.
The path ahead following injury and trauma holds invisible perils for those who lose the mechanical and often biochemical ability to maintain insight and self-awareness following brain injury. The inability to absorb and process incoming information in any format is profoundly disabling and has immediate and far-reaching consequences to which the consciousness is entirely blind.
For professionals and assessors, the retained ability to present well for short periods in this population can hinder the evaluation of decision-making ability. Therefore, it is paramount that a review process or intensive training across numerous professions is employed to avoid poor consideration of multiple and complex deficits. Such deficits, often hidden by the individual’s appearance, will be there – it takes skill and knowledge to see the effects of executive and cognitive impairment and lack of insight.
When wholly incapable of connecting with past experiences and wisdom, the actions of a person living with brain injury, driven by autopilot, can appear dysfunctional to others while seeming reasonable to the individual. Crossing these barriers in perspective is unreservedly complex for the individual or team tasked with supporting someone through what the injured person cannot recognise as critical life events.
The state of blissful ignorance often experienced as encompassing many of the early years of life post-injury is cumbersome to the ability to understand safety and potential deleterious outcomes as a consequence of confused and incomplete actions or decisions. There is a domination of previous life habits, which the malfunctioning prefrontal cortex is incapacitated to override.
When left to their own devices, people often feel a false sense of security. What looks and feels like awareness and control to the survivor can present as a denial or complete misunderstanding of facts. There will be no awareness of the missing data or skill level, which would otherwise enable greater comprehension and mindfulness of a fuller picture.
We can not only learn about the profound changes these consequences create but also develop incredulous intellectual and empathetic knowledge to support and safeguard people who no longer understand critical aspects of decision-making.
The incredible skill and knowledge of incapacity, demonstrated by the contributions made by all the professional speakers at the Dr Melanie George Memorial Conference on complex decision making in mental capacity practice, evidenced this proficiency. (London, April 29th 2022).
Put succinctly by Neil Allen, Barrister at 39 Essex Chambers, Senior Lecturer at the University of Manchester, and Founder of LPS Law Ltd., “A common area of difficulty is where a person – often a person with an acquired brain injury – gives superficially coherent answers to questions, but it is clear from their actions that they are unable to carry into effect the intentions expressed in those answers.”
Further to this, Niel Allen adds, “It may also be that there is evidence that they cannot bring to mind relevant information at the point when they might need to implement a decision that they have considered in the abstract.”
The Heads Together project is a study designed to address the knowledge and skills gap in Social Work education to improve practice and outcomes around brain injury. Professor Bateman, a brain injury specialist, describes making “a great difference to the lives of people affected by brain injury, through improving awareness and training of social workers.”
The project will include the production of ‘materials for families and service users to support advocacy when working with social workers and help support the potential role of social workers within an interdisciplinary team.’
Funding of £153,000, received from the National Institute for Health Research (NIHR), ‘will enable the project research team to meet brain injury survivors, social workers and their managers to get a detailed understanding of the changes needed.’
To follow and get involved in this project, please join the Facebook group, ‘Brain Injury Meeting Place Survivors, Families, Professionals, Researchers,’ where regular updates will be posted. Please see the pinned post, ‘Improving the support network for people with brain injuries,’ for further details and to leave a comment for Professor Bateman about your interest in the project.
We will also post updates on the GBIA Facebook community page, Global Brain Injury Awareness.
Please see ‘Awareness and Insight’ under the ‘Living with Brain Injury’ section for further helpful information from an experiential perspective.