Re-claiming life after brain injury
As I stand on my side-line almost 20 years after my brain injury, I don’t see past, present and future the same way others do.
What I see and live is a continuum of repetitive re-learning and of putting back understanding and knowledge.
I see a quest, a mission of a ceaseless pursuit to re-find my ‘self.’
It wasn’t only my brain that needed attention across these years; my mind needed life breathed back into it too.
It took me well over a decade to be conscious of the fact that the autopilot needed switching off so that ‘I’ could take over again.
My mind needed to return from the labyrinthine prison that had confined it so I could take the ship’s wheel again.
Without control or recognition of the inner narrator, I couldn’t take charge of my thoughts, and it still feels as though a dam is blocking the flow of my inner energy stream.
Even now the part of my brain that should logically order time, and therefore memory, continues to struggle to perform well enough to allow me the confidence to trust myself.
It is odd to me that this missing linear order of my data should be the cause of so many persistent challenges.
Looking back, I understand that my brain is still doing the best it can with the residual chaos of my brain injury.
Imagine taking all the books out of every national library and trying to put them back while the librarian (i.e. the brain) has forgotten the reference system.
With this in mind, and understanding that it is impossible to refill the empty shelves without being able to read or recognise the language the books are written in, you will be close to knowing how it feels to have all your thoughts about your life experiences concealed from view.
Part of the problem those of us living with brain injury have is that the brain no longer knows what was, or is, relevant and important.
This makes it difficult for the brain to know what to rewire and what to leave for later.
When every moment brings new sensory input, the brain is constantly exerting itself, thoroughly overwhelmed, because the task of matching data is so monumental that neurological fatigue becomes inevitable.
Yet, only new lived experiences can rebuild cognitive confidence.
I recognise that living with these issues for so long makes it difficult to let go of the habitual, learned observation of my brain, but without practising conscious awareness, I fear that my fragile inner world would fall apart.
It is a Catch-22. Just as, some years ago, I realised I needed to re-enter the external world to access more opportunities to re-learn, I now recognise I also need to let go sometimes so that I am not exhausting my energy in the pursuit of progress.
In the early years of my brain injury, instead of my adult self, I was the small child glibly bobbing along, completely oblivious to the effect I had on the world around me.
Picture child evacuees, standing on a train station platform during the war. Hanging from a string around their necks are brown labels, marked with their names.
My brain injury diagnosis was just as abstract to me in concept as those labels were to the youngest evacuees.
My brain was unable to ingest, process and understand the meaning, change and impact of my injury because, just as those children had no experience of the changes before them, neither did I.
I had no memory of past experiences, of the wealth of knowledge and wisdom I had ingrained into my personality during the previous 36 years.
I was working it all out again from scratch and didn’t even know this was happening to me.
Knowing something is happening and being consciously aware of it are two entirely different things. Even people with uninjured brains can sometimes struggle to fix their knowledge into their understanding.
Mostly this happens alongside change and improved understanding. It can be difficult to focus the busy mind on new facts because of a tendency to push unneeded, new information away so that we don’t feel overloaded.
We tell ourselves that we will come back to it, and, at some time, inevitably, we will.
However, it doesn’t work like this when the brain is injured because, even if you could process the information so that you were aware of its existence, difficulties with working and short-term memory can make learning almost impossible.
Commonly, those of us living with brain injury may also revisit peripheral information or experience unresolved emotion.
The brain wants the data it holds to match up, but it can be persistent in telling us that it doesn’t!
Repeat after me
Perseveration (repetition) following brain injury is both a fundamental and natural part of recovery – and here is where a Neuro Occupational Therapist can be worth their weight in gold.
Neuro OTs encourage and reinforce repetitive action and thinking to help the brain to re-wire and re-learn.
In the absence of this help, life is like Groundhog Day with the added drawback of not knowing that’s what’s happening and not knowing how to change it.
Rewiring the brain following injury is a process. There are steps you need to take before you can re-discover your mindfulness and awareness.
When so much data is missing, it is imperative to learn how to put thought before action so that you compensate for your automatic pilot’s slick attempts to take over without your knowledge.
A Neuro OT can help you find a starting point and avoid inadvertently developing unhelpful habits.
Although the experience of brain injury is unique for each of us in many ways, I was fortunate enough to be so profoundly lost that I didn’t even know ‘the old me’ anymore.
The overseer and decision-maker; the thinker and philosophical self-guide; and the contemplative controller of my emotions; they were all gone.
I know many people struggle with a complex array of symptoms, together with psychological and emotional responses that the injured brain struggles to understand.
Some people, usually those with milder injuries, remain aware of their past, the dreams they held for the future, and the profound differences trauma has brought to their lives.
Families also need support and the professionals who specialise in managing the effects and outcomes are, to me, an absolute necessity.
Tackling issues head-on
Currently, in the UK, only 3% of people who suffer a traumatic brain injury are referred for cognitive rehabilitation, compared to 63% of people who have suffered a stroke.
The Government’s All-Party Parliamentary Group for Acquired Brain Injury, chaired by MP, Chris Bryant, and supported by other specialist organisations such as UKABIF, is tackling these issues head-on.
In the meantime, people living with a brain injury and their families must look at all the options available to them.
Headway - the brain injury association provides support and advocacy, including educational material to assist GPs and advice on referrals for neurological assessments.
In cases of traumatic brain injury, it is also advisable to seek the expertise of a registered, specialist solicitor.
They can advise on compensation claims, which may be a means to access private neurorehabilitation, and issues surrounding capacity and the management of financial affairs.
Apathy can be a hindrance in neuro-rehabilitation and, yet, often arising from a lack of self-awareness or insight into the changes caused by a brain injury.
While someone may insist they are ‘fine’ or able to manage, they may be inwardly confused, still feeling like the person they were.
It is usually those on the outside who notice the differences, and there may be a need for help from experts to get this across.
Many people living with brain injury report knowing that their brain feels different, but are unable to explain how.
Sometimes, without specialist medical support, such confusion can continue for many years.
The thinking voice
It has taken me a long time to start to recognise and objectively use the thinking voice in my head again.
I am aware that this helps me with mindfulness, especially of others, and also the self-awareness I need to be in more control of my actions and behaviour.
I still have peaks, plateaus and regressions, and still struggle with understanding and processing, but, overall, I can see my perpetual improvement and shift across the brain injury spectrum.
I am also becoming very aware of the connection between my health and my environment and how these can have a very direct effect on my brain and cognitive health. More about this next time!
Anne Ricketts is the founder of Global Brain Injury Awareness (GBIA); a not-for-profit community interest company she launched after sustaining a traumatic brain injury in July 2000. GBIA aims to inform and support people in need after brain injury. More here: https://www.globalbia.org/
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