The Inside and Outside of Brain Injury
*Perspectives give us different understandings – information for survivors and families
*Taking time to pause and reflect
*Change is a process – use practical tools and strategies
*Understanding and setting priorities
For those directly affected the world can seem like an outlandish and alien place following a brain injury, and it can be incredibly hard to begin to comprehend the changes and differences in both the self and operation of thinking.
For those on the outside, the families and friends, things can also be tremendously painful and confusing, although the sources of discomfort and worry are very different.
The one thing that creates the differences in how the experience is ‘felt,’ is perspective. For those who have never experienced brain trauma, there are very few examples to be found in everyday normality that can help people to understand what living with the outcomes of a brain injury is actually like.
There isn’t any middle ground, and it can feel as though a frightening rip in the universe has opened up separating familiar routine and relationships, leaving people unsure of where their new comfort zones are.
The impact of brain injury ripples out and touches many lives. People must give themselves a chance to understand just how much the personal and everyday aspects of life can be affected. This impact affects those on the inside in different ways to the ways it affects those on the outside.
Getting a handle on how change impacts life can make a vast difference in how life is lived post-injury or following the diagnosis of disease.
Initial Stages Experienced
From the inside to the family
We often struggle with describing what this is like and our means to express ourselves, and to find the vocabulary we need, can be beyond our cognitive abilities.
We don’t always know that it can be incredibly hard for loved ones and friends to relate to us because the limited information and descriptions we can muster don’t fall within the bounds of usual experience. We can struggle to make sense of incoming information, and often, the data is put on a back-burner until more is understood.
We will come back to how the changes affect people living with the outcomes after looking at how they affect the immediate family. How other people react is enormously important and can inadvertently cause critical complications for people living with brain injury. It is crucial, for many reasons, that we will come to, that these understandings are considered and acted on wherever possible.
For families – a way forward
It is sometimes better to create a conscious point of pause so that changes can be acknowledged. Find time to stand back and take a deep breath.
When dealing with the aftermath of disruption to everyday life, it can be challenging to find the time to consider the personal impact changes have had on you. Being suddenly tasked with taking on extra responsibilities can be challenging, and it can be tough to foresee what may happen over the long term if all priorities aren’t pre-considered. There can be a lot of unexpected demands, and it can be challenging to account for and deal with all the things that need to be done to support these changes.
Starting out with good information
Finding the right balance
One way to alleviate the worry is to be proactive and find out everything you can. It is like filling your arsenal with ammunition – you need the information to be able to fight back and to be able to take control over something that can otherwise be very stressful.
Educating ourselves enables us to use the information we have gleaned to be able to cope. Many factors need taking into consideration, and it is important to deal with one thing at a time, and often, as the need arises.
For example, it may not be immediately apparent that someone may be unable to return to education or work and their capacity to earn an income may be affected, but only known about after some time has passed.
There are vast amounts of information about brain injury publicly available on the internet. It is important to be able to find trusted sources and to know what to believe!
The inside of living with brain injury
There may have been a period of unconsciousness or coma, and those on the outside often assume that this confusion is related to memory loss or even to a stressful period that predates the injury or disease.
There can be a tendency to overlook the cognitive disabilities that have occurred and instead people on the outside may erroneously assume that something within their own comparative experiences is happening.
Those on the inside can’t always explain or put the record straight. In many ways, losing the pathways their histories can leave them struggling to defend themselves. Sometimes the ideas that people on the outside have can pervade for years and often there is no way for those on the inside to correct this because they commonly no longer have command of the skills they need to be able to communicate accurately.
The loss of memories and difficulties with processing and thinking can lead to an unconscious loss of trust in those on the outside. People on the outside may feel that they have to ‘step-in’ or make allowances, and while this is often needed on a practical level, if undertaken about matters of a personal nature, it can damage trust and relationships – no matter how well-meaning.
For some people, it isn’t only like waking up in a nightmare where the fear is all-pervading, but they know it will release them sooner or later – it is like waking up in a nightmare and finding this is it! Often there is little or no reprieve – the horror continues and no matter how kind the faces around you, no matter how gentle the touch or smile – it soon becomes a state of being that encompasses them, and they have no power to describe adequately.
For some people the loss of self-awareness is so severe that they don’t seek out help at moments of cognitive struggle – some people don’t know how to pause the confusion and don’t know they need to.
Very often, the brain is much too overloaded to make sense of the fear, and it cascades into a biological mess of detrimental chemicals and hormones that continue to damage the neurological structures of the brain.
Because the injured brain is impaired, it may not occur to people to try to explain what it is like to live with a dysfunctioning mind. They may not have the awareness or understanding to describe what is happening to them.
The odd thing is that when we see this in people living with dementia, there seems to be an automatic expectation and acknowledgement of these kinds of problems.
As neurological impairment and disease increases, we may all need to get used to understanding and being empathetic with the outcomes.
Pause, acknowledge and ask
Yes, it is confusing for everyone. Yes, there will be a steep learning curve. Yes, new ways of communicating may be needed.
Those on the outside may need to learn to slow down and allow time for responses, to enable pauses without being afraid of them, and to enable adjustments based on the fact that things are indeed very different. They may need to learn to accept that what people are saying is right for them. Learning to allow for any lack of understanding can help relationships.
Rewiring is a process that is enforced by routine and repetition. The previous world of ‘normal’ has changed and yet, at the same time, especially with brain injury occurring in adults, and even teenagers, where there was an established sense of self, patience is needed to retain respect for the person who is now struggling beneath an array of cognitive disability. Maintaining a balance where there are clear differences in behaviour can be difficult, but it is important to look beneath the surface and try and understand that a person’s intention may have been trying to instigate a particular response or behaviour, but just came out differently to what they meant.
Very often, intention gets lost in the labyrinth of injured neural networks on its way out. Surface observations often have little to do with the initial impetus that drove a reaction or response.
If you don’t understand a particular behaviour, it can help to give people time and also to ask them to write down what they were trying to do or say. The process of writing slows down the thoughts in the brain and can sometimes enable people on the inside to grasp an understanding of their intention, and possibly a realisation that their words or tone, for example, didn’t match this.
In time needs will change. It helps when giving feedback to explain why you are giving it rather than just telling someone that their behaviour was not what was expected, was inappropriate, and so on.
Following brain injury, the reptilian brain can take over. The brain has one primary objective – to sustain life. The injured brain knows that its neural networks are damaged and so it switches on the automatic drive – much like being driven around by a robot while you are pinned down unable to move in the back seat.
You can’t change positions with the robot, and you can’t communicate with it – all you can do is hang in there are pray that you will get to the final destination safely.
This ‘automatic driver’ doesn’t care about the same things that the pre-injury person consciously cared about before. It may not recognise relationships and may have little awareness that anyone is even in the back seat.
The fight-flight responses are permanently switched on, and the driver is blind and oblivious to and of the discomfort of its passenger. To say that this experience is painful is an understatement – it can be soul-destroying and can feel as though you have lost connection with your soul.
It can take years before people begin to recognise that they are no longer in their driving seat and the compassion and understanding of those on the outside is of paramount importance if the person on the inside is to feel any sense of comfort.
Brain injury experience from the inside perspective is so fundamentally different from that observed on the outside that if this isn’t understood early on all kinds of problems and complications can arise.
No one needs to be alone on this path. There are many support groups and networks where you can talk things through with your peers. It often helps those on the inside to know that whatever comes out there are other people who will completely understand and be able to empathise.
Experience of this journey enables others to share their findings, what works and what doesn’t, what enabled them or gave them strength when they needed it, and so much more.
Peer support can help people get from one moment to the next. Many people can feel isolated by the occurrence of brain injury and the confusion it brings in its wake.
Finding new friends who have walked the same path and kicked up the same dust can feel like more than a refuge – it can feel as though you have started to find the stepping stones that lead you back towards home.
You can find links to support groups on our contact page.