The Inside and Outside Perspectives

  • Introduction
  • Struggle with Reading? This Section In Brief
  • The Early Experience of Living with Brain Injury
  • For Families – A Way Forward
  • Families – Starting out with good information
  • The Inside of Living with Brain Injury
  • Pause, acknowledge, and reflect
  • Peer Support

Introduction

For those affected directly by brain injury, the world they now find themselves in can seem like an outlandish and alien place. It can be incredibly hard to begin to comprehend the changes and differences in both the self and operation of thinking, especially if you are aware of the psychological impact of your trauma which, in and of itself can be totally overwhelming to deal with.

The impact of brain injury ripples out and touches everyone in different ways. People must give themselves a chance to understand just how much the personal and everyday aspects of life can be affected. 

The repercussions affect those on the inside in different ways to the ways it affects those on the outside. This is the ‘experienced perspective.’

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 are no personal experiences you can use to try and compare or understand although, because this is all most people have in the early stages, this is all they can use to try and understand the changes happening to a loved one. What they see or are told sometimes seems relatable, but it really isn’t.  This is the ‘observed perspective.’

There isn’t any experiential middle ground, and it can feel as though a frightening rip in the universe has opened up completely changing familiar routine and relationships, and leaving people unsure of where their new comfort zones are.

Knowledge and understanding about the things a loved one is going through and are up against, can only be gained through research and education. If you are lucky, the specialists working with your family member, such as a neuropsychologist, neurological occupational therapist or case manager, will include you in the treatment programme and will help you understand what you can do in terms of help and support. If you are unlucky, you will have to find information in other ways.

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.

Struggle with reading? This section In brief

This section describes why your perspective is often different from the people around you. 

There is a lot to read. If you struggle ask for help or use text to speech software to help you. 

If there is too much information for you to process and remember, the important aspects are in brief here.

A brain injury, even one where there has not been or has only been a brief loss of consciousness, can affect how you are able to understand what your brain is doing.

In brief:

You might think that you don’t need help.

It might feel like everything you want to do and say is the same as it has always felt. 

You might not realise that damage in the brain affects the way our thoughts travel and work meaning that ‘what comes out,’ doesn’t match your intentions.

You might know that your brain works differently, but not be aware of what these differences are.

You might believe that things will sort themselves out in time.

You might be aware that other people don’t respond to you in ways they used to, or that you feel criticised, or as though everything you try and do goes wrong.

You might not know why things are going wrong. 

You may feel trapped inside your brain, or as though something has pushed you away from everyday life.

You may notice you can’t do the things you could before, or get too tired or forget to finish a task.

If you think any of the changes listed above apply to you, give yourself some time to think about getting help.

When the confusion and changes do not clear up quickly, or within three months, you should speak to your doctor. It can help to take someone with you who can describe the changes they observe.

Getting help early on:

  • Will help you avoid many potential pitfalls
  • Will help you feel supported
  • Will help you understand what has happened
  • Will help you recover better and to rewire your brain
  • Will help you learn strategies to help compensate for brain impairment

The early experience of living with brain injury

Are you struggling with understanding other people and with being understood?

There are many complex reasons why this happens; we understand it is challenging for you to work out what is happening.

You may feel very confused and overwhelmed and may have been feeling this way for a while, or for a long time.

 Sometimes we are given information or informed about various aspects of our brain injury, and are then left to fathom this out on our own.

Now and then, information is given to us again, but we have forgotten the last time, and it isn’t easy to take on board and process.  

For those who have lost self-insight of self-awareness, it seems impossible to work out what other people mean. Sometimes we can struggle even to understand why they think we have a problem.

You will know which parts of the information below relate to you. You will recognise the descriptions of your experiences.

Why do people tell me I need help?

One of the first things people experience following a brain injury is the perception that the brain is different and no longer works the same. 

Even though you may have thought or perhaps recognise this, you might still feel like ‘you,’ especially if you are walking and talking and don’t have physical deficits to manage.

While you don’t feel different inside (still you), you may notice that many things you say, or try to do, are now going wrong.

Noticing that life around you has become chaotic, and yet you don’t understand why, is usually one of the indicators that you have changes in how your brain feeds back information to you.

You need to be aware that you may have no idea of the external impact your neurological changes are having on those around you, and indeed, on your performance and behaviour.

If you can relate to any of this, it will be because your family and friends can observe what has changed easier than you can.

Their ‘outside’ view of you is different from your ‘inside’ view of yourself.

If people you love and trust are asking you to get help, please make an appointment with your doctor and take someone with you.

Why can’t I tell people what it is like for me?

We often struggle with describing what living with a brain injury is like and can become angry or frustrated.

You may find it is not easy to express yourself and can’t unearth the vocabulary you need to explain what you are having problems with or how you feel.

Alternatively, you may know you are doing your best and don’t understand why people don’t seem to listen or perhaps don’t seem to believe you.

We don’t always know that it can be incredibly hard for loved ones and friends to relate to us because of the limited information and descriptions we can muster.

It may feel as though what you are saying is clear and straightforward. You may not be aware that a brain injury can turn your intentions and motivations into something entirely unexpected – and importantly – you may not recognise when this happens.

What ‘comes out’ doesn’t always match what we think it should because of the way information is relayed through the injured parts of the brain.

You may notice other people’s ‘outside’ view of you is different from your ‘inside’ view of yourself.

If people you love and trust are asking you to get help, please make an appointment with your doctor and take someone with you.

Why don’t people understand me?

Many of us feel frustrated when we instinctively sense we have been misjudged or misunderstood, but may recognise we are struggling to understand why.

Usually, an uncomfortable feeling tells us something more is awry, especially when we think we haven’t had these kinds of problems in our relationships before.

You may wonder why this is happening to you.

Because we can still feel like ‘us,’ it doesn’t make sense that ‘us’ isn’t what other people are seeing. If they were, they would understand where we are coming from, and should understand our intentions.

Because the injured brain doesn’t feedback information to us in the same way, (because of changed or broken neural networks), we may think other people have the wrong end of the stick, and we fail to notice what they are observing, is we would have done before the brain injury.

Slowed processing also makes it difficult to relate to our feelings and incoming information in real-time. 

Living with a brain injury doesn’t fall within the bounds of everyday experience.

Even if you had full access to all your memories and all your life experiences, you would still struggle to understand brain injury because you haven’t lived this experience until now, and you are still learning about it.

It can take years before you have enough experience and information to relate to, and can begin to recognise where there are changes in your executive and cognitive functioning.

Other people are seeing us differently to the way we can see ourselves.

To make progress, we will need to learn to trust the feedback our specialists and families are trying to give us. 

Why don’t things make sense to me?

When we don’t immediately understand something after a brain injury, we may unconsciously put this ‘new’ information on a back-burner, or forgot about it until later.

When more is understood and experienced, and we have more data to match and compare, we find a light goes off in our head as we realise something finally makes sense.

Your subconscious brain is always working behind the scenes trying to tie your thoughts and experiences together. This process continues even when you believe you have forgotten what you were trying to do, work out, or achieve.

The subconscious is always trying to process unfiled information and unanswered questions until we are ready/have enough data or another piece of the puzzle is made available. 

Doing this may seem very alien to us because we have always been used to trusting ourselves and our independence. That things have changed can take a very long time to understand, and in the meantime, we need to learn to rely on others. 

Perhaps the only ‘clause’ would be to make sure we are trusting the right people, and if we feel in any way that something isn’t ‘right,’ then we should always seek further opinions. 

Although we may not be aware of it, brain injury can make us very vulnerable. 

Remember, if your treatment programme doesn’t include your family, or you were sent home to recover on your own and don’t have any specialist help, then they too will be unaware of the realities and implications your brain injury are bringing.

Ask them to accompany you to any medical or rehabilitative appointments or to come to this or another website to find out as much as they can so they can support you in an informed way. 

In this section, we will come back to how the changes affect those of us living with the outcomes of brain injury, after looking at how they affect the immediate family.

For families – a way forward

Many people believe that the sooner they can get their loved one home, the sooner they will heal.

Very often, the priority for families is to keep things as normal as possible. Maintaining normality gives people something to focus on and adds feelings of familiarity, but often, this stance becomes the new norm, and people can fail to address the genuine changes that have abruptly entered their lives.

Sometimes this can lead to burnout because instead of learning and adapting, the same mistakes are continually made.

Even when people have been advised to take time for themselves, caring for a loved one who is living with the effects of a brain injury can be all-consuming and overwhelming. 

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.

A further challenge can be understanding the changes you can see, and trying to work out what these are and how to understand and accept them. Few people are given information and while more families are being included in treatment programmes, many are still left out. It might be left up to you to learn why your loved one is behaving so differently.

It is very easy to misjudge the signs and outcomes of a brain injury. For example, you may think you can see signs of laziness or a bad attitude when, what you are really observing is neural and/or physical fatigue, problems with initiation (getting going), stress and frustration caused by a loss of memories, loss of insight or perhaps ‘flooding.’ 

If you aren’t familiar with these terms, don’t worry – you soon will be. The main thing to bear in mind is that a brain injury can change the way an individual can think and also how they do things.  

You will be the observer on the ‘outside’ and it will likely take you some time to understand the changes you are witnessing and living and learn how to adapt. 

There are many blog pages and books available which have been written by ‘caregivers’ and it is worth spending some time seeking these out. The experiences of others will benefit you and everyone else in the household in many ways.

We recommend:

Family Experience of Brain Injury 

Brain Injury not only affects its victim, but those around them. In many cases, relatives are often overlooked despite facing many obstacles accepting and adjusting to a new way of life. Family Experience of Brain Injury showcases a unique collaboration between relatives of brain injured individuals and professionals from the field of neurorehabilitation. Family members from all different viewpoints tell their story and how the brain injury of a loved one has affected them.

This book provides a space for those hidden and marginalised voices, the people who are in for the long haul, often dismissed by services and left to cope in isolation. By combining expert commentary with real life experiences, this book points towards sources of support, normalises the experience and provides a context for understanding the grief and losses of family members. Not only will the hard-earnt knowledge and wisdom evident in this book help educate health and social care staff, it highlights how love, commitment, hope and perseverance, against a seemingly unbearable grief, can remain.

It is essential reading for individuals and families touched by brain injury and will give multi-disciplinary professionals, such as medics, nurses, psychologists, therapists, social workers, rehabilitation practitioners and clinical supervisors, a greater understanding of their role in helping the affected family.

My Mum Makes the Best Cakes

‘How can we talk to our children about Brain Injury?’

This is a regularly asked question by parents who have suffered a brain injury and their respective partners.

This book has been designed so that children between five and eight can read it independently. However, ideally it should be used with an adult to facilitate discussion about all aspects of family life and to enhance general emotional wellbeing.

This book deliberately makes brain injury one of many things going on for this small group of children because for most children it is only one of many issues in their family life.

This story is intended to emphasise that all families are different, with their own strengths and weaknesses and different experiences. Brain injury is another experience that some people encounter and others do not.

Families – Starting Out With Good Information

Without a shadow of a doubt gauging and understanding the needs of a loved one following a brain injury, or news of neurological disease can seem daunting.

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 stressful to the extreme.

Educating ourselves enables us to use the information we have learned 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.

You play a pivotal role in how well your loved one will recover. You may think that learning about brain injury will be enough, but it can help enormously if you take the time to consider the foundations you are working from. You are also going through a lot of changes. 

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.

Things to Recognise About You

You will have your own set of core beliefs, values, preferences which create your ‘norms,’ and experiences. 

It is essential to acknowledge your level of understanding about brain injury as early on as possible. If you don’t have any previous experience of how to approach or understand someone living with brain injury you may contribute to impending relationship problems without knowing this is what you are doing. 

Another first step is to acknowledge the dramatic changes that have happened. This sudden change can make the best of us feel daunted, fearful and worried. It can help if you are aware of how much responsibility you can or want to take on and to think about what help or support you will need. 

Think about how much you have already accepted or whether you feel more needs to be done. This will give you a good starting point.

Acknowledge feelings of grief or ambiguous loss early on. 

Things to Acknowledge About You

Living with someone who has a brain injury can add a lot of pressure and responsibility to your everyday life. Ask yourself if you are ready for this and be honest when you weigh up your own hopes and dreams as the changes you are going through will likely alter your life plans. Are you ready to adapt?

Failing to do what is good for us is normal. We all make mistakes and it can take us all time to adapt to change and to reach new realisations or gain new insights. 

Bearing in mind that we are all human and might be working with ideas and beliefs that need updating without knowing it, it is important that you don’t blame or reprimand your loved one, especially out of context. None of us like to be told we are ‘wrong’ or to be told what to do.

How we approach mistakes is crucial for the maintenance and health of your relationship. You may have to take more responsibility for this is you want to help and want things to work. 

It is harder for people living with a brain injury to engage and to do so at previous levels of understanding. Finding a balance between helping and compensating for them starts with knowing what you are and are not willing to do. 

Feelings of guilt that rise early on can be difficult to shift so try to be clear and honest with yourself and avoid self-judgement and self-blame because these will only eat you up and distract you from getting on with life. You might also be worried about what other people will think about your choices and be fearful of being judged. Try and bear in mind that it isn’t possible for any of us to be perfect and to be aware of when people are holding you to a higher account. 

Sometimes you will have to see how things go before you can make clear decisions. Possibly one of the hardest things to juggle are the ‘unknowns’ such as, how long you will need to adapt for, when you can expect a loved one to get better, and so on. 

There will be a lot of unknown variables and many of these will depend on how seriously your loved one was hurt, their mental and general health prior to injury, whether or not they have expert help, their personality type, and which parts of the brain have been affected, can all be factors in what you will need to do to support them. 

You won’t be able to think of everything but being aware that something new will always crop up to start with can prepare you for accustoming yourself to change. 

When you know that you have failures you can begin to understand how much harder it is for for your loved one. If you are struggling to see the ‘big picture,’ then it is easier to accept that they might not be able to see it at all.

If you are finding it difficult to be rational with so many emotions and psychological changes going on then imagine what it must be like for them. 

Most of us find it hard to be reasonable when we are anxious, tired, stressed out or feeling overwhelmed. All of these factors are exacerbated to unbelievable levels after a brain injury, and what can make it even worse, is that they may lack the insight or awareness to even know how they are feeling.

How we feel and how we come across to others is changeable depending on our mood, what we are thinking/remembering or how tired we are. Everyone has moments when hope seems futile and you just want to walk away and get back to normal. While this is relatively fleeting for you, these kinds of feelings can be a permanent feature for your loved one. 

When you are living with a brain injury there is no escape, there is no reprieve, a night out or a hot relaxing bath won’t make the brain injury go away. The bad days you have are an enduring and perpetual feature of their lives. The only thing they can hope for, if they are able to think of it, is that the magnitude of pressure will eventually start to diminish. It will never go away, but their brains will rewire and they will learn to compensate for their thinking and processing deficits.

Acknowledging Shattered Assumptions

Life as we know it is known as the assumptive world, which is often shattered by trauma and significant life change.

Life before this trauma interrupted it and brought change rested on your assumptions about it.

Our core beliefs and personality create a range of preference which influence how we think. Whether we are aware of it or not, these assumptions become a kind of bedrock that keeps us stable, secure, predictable, familiar, and oriented.  

In a sense, they are like habits – we do certain things without needing to rationalise or think about them. Over time, as we learn, use insight, and adjust and update our views and understanding, we create core beliefs about how the world around us operates.

We might think of life as being benevolent, which supports our self-confidence and self-worth, or we might think of it as based in malevolence and be more guarded or find we need attitude to maintain and support our coping mechanisms.

The more transparent and aware of our beliefs we are, the more stable and responsible we feel and the less thinking we have to do because we are happy with our automatic behaviours.

This underpinning of our conceptual systems, or how we perceive the world around us, make up our assumptive world.

Colin Murray Parkes is a British psychiatrist and the author of numerous books and publications on grief. He described how our conceptual world works as, “a strongly held set of assumptions about the world and the self which is confidently maintained and used as a means of recognising, planning, and acting.” This paradigm can be shattered by trauma to ourselves or others.

When your familiar world is crushed, what you are witnessing in yourself is the loss of your core beliefs. It can take time to adjust and re-establish these and decide how they fit into your changed life now. Very often, given time, people come back to believing the same core things as they did before. However, it takes time to sift through the fallout to get there.

Because impactful change, as caused by a loved one sustaining a brain injury, is disorienting, and can lead to feelings of panic and insecurity, understanding how this can create grief and ambiguous loss can be helpful. If you don’t deal with changes in a rational way then the vagueness surrounding your losses can lead to unending grief. 

Recognising how hard this is for you can help you understand how impossible it must be to do any of this when you can’t easily absorb and process information from the internal or external world, and feel like an intruder inside your own head. The inability your loved one may have to recognise grief can absorb their energy for years and decades to come. It can be impossible for them to figure out, especially when they have problems with memory and the loss of experiential data. 

Learning from Tried and Tested Approaches

It might take a long time before your loved one knows about the changes in them and it is only when they get to this stage that they can begin the acknowledgement and acceptance process.

More people than were previously believed suffer a loss of, or lack of, insight. Insight isn’t the same as intellectual awareness which they will maintain. The important thing to understand is that just because someone knows about something, i.e. intellectual awareness, this doesn’t mean they recognise the relation to themselves. Insight is when you reach a realisation and have an ‘ah-ha’ moment.

People can know they have a brain injury for example, but not know that it ‘their’ brain that is injured. They might intellectually understand that something is different, and yet have no awareness of what has changed. 

This lack of insight or realisation can lead to many associated problems. For example, they may talk about an experience but if you ask them about it later they genuinely will not not what you mean. When you couple this with problems with short term memory and learning you can easily understand why adjusting to living with someone who has a brain injury is mind-boggling.

There will also be different levels of awareness. For example, they may seem to have accepted the changes because they don’t mention them, and yet be irate because of their losses, such as educational or work opportunities. If you question them they may give you one answer one day and another the next. To them, both answers will be their truth but to you their will appear to be a lack of cohesion or hints of paradox. They are showing awareness, not insight. The light bulb isn’t alight even though it seems as though it should be. 

This kind of changeability can vary depending on how tired someone is. Stress, memory problems, distraction and other issues can all play a part in why someone acts differently on different days. How aware they are can also fluctuate so, there really are good times and days, and bad ones.  

No one can change or control this. A neurological expert such as a neuropsychologist or neurological occupational therapist can provide support and help people understand the changes they are experiencing.

You might have to utilise your imagination when you are engaging with your loved one. Try to come up with different approaches and ideas as alternative methods of communicating may compensate for lack of insight and understanding.

One thing that doesn’t work is trying to challenge someone who has a lack of insight. Not only do we all dislike being told what to do but it will seem to your loved one as though it is you who has hold of the wrong end of the stick. You won’t be able to shift this paradigm but instead need to find ways to accommodate it.

It would be nice if people could:

  • keep pace and keep on track, but they can’t
  • do what you ask them to do – especially if they have said they will
  • pay attention to you, stay focused and show they care without getting distracted, drifting off or perseverating on a topic you were ready to leave behind
  • do what they say they will instead of going off and doing something else or going to take a nap in the middle of a task
  • remember and do what you agreed and check and make lists – but it is difficult to relate to why new strategies are needed
  • learn about what you are doing and why so that they don’t undermine you
  • understand what you need from them

In many ways helping the person you love to adapt and to better manage their life can be much like child where you need patience and to repeat things. Try and keep your tone adult to adult and be aware it may be months or years before learning is instilled into habit. 

Try to be consistent and prepared and remember that talking about something requires awareness and describing it requires insight.  

Understanding your Loved One

There will be many complex changes and getting used to these and understanding them will take time. 

Think about what works for you and apply strategies accordingly. For example, we all respond better when we feel listened to and respected. 

It takes acceptance, understanding, and realisation to be open to learning again after a brain injury. You may look for humility but find obstinance or reluctance because people often know they could do things and are failing to get the insight that they now can’t. 

You will need to be flexible and to make allowances. It might feel like you are walking on egg shells and you might want to back off for a bit occasionally for self-preservation. It is always okay to look after you too and if you are struggling, don’t be proud, ask family and friends to help. 

Another unexpected thing you may need to do is to build trust. As strange as it seems, when someone no longer has confidence or faith in themselves and feel a loss of the intimate trust that goes with this, it can be impossible to know this is happening, and extremely tough to trust other people. 

Neurological testing will help everyone understand more about how the injury has impacted somebody’s functioning. Without this ‘evidence’ you will need to rely on what you observe yourself. Although you can’t ‘see’ the brain injury, you will know it is there because of changed behaviour and differences in the way someone operates during everyday routine and tasks.

For example, you might come home and find the vacuum cleaner in pieces or perhaps looking rather odd with a pile of screws and washers on the table. If someone can’t work out how to do something, for example, empty the dust collector, they may forget what the initial problem was and investigate further.

More Useful Strategies

You may find yourself tackling all kinds of issues you weren’t prepared for and when you are already dealing with more responsibility than previously, you might find yourself getting defensive if more is being asked of you.

Being prepared is key to avoiding conflict and bad atmospheres. It may seem that a lot is falling on your shoulders but as the person with the working brain you are in the best position to take the best control you can.

How we speak to people can make a world of difference to how they react and while you probably don’t have the time to learn new communication skills there are a number of approaches you can use fairly easily.

  1. Come from a place of acceptance and without judgement. You don’t have to reason anything or put your point of view across. Wait and see if there is a need to do so – anything you don’t agree with might be forgotten. 
  2. We all have autonomy to choose and sometimes we may disagree with what someone else wants or thinks. One way to help your loved one see that they could possibly make a better decision is to encourage them to think and talk about their own reasoning without adding your own.
  3. Consider how ready your loved one is to listening to you. Ask what their plans are before correcting them. This way you can gauge their understanding without assuming they haven’t thought something through. Let them work this out before offering to help.
  4. Go for the collaborative approach – can we do this or solve this together?
  5. Think through the different levels of acceptance to make sure you aren’t circumnavigating any possible strategies. It can be tempting to rush to a judgement only to regret it immediately or later.
  6. Everyone has worth and the right to their truth and beliefs. You may see something could be updated, reflected on or changed but it is better for someone to work this out for themselves.
  7. Compassion and empathy can help us be kind rather than being tempted to make someone else wrong for the sake of speed.
  8. You have a right to ask for something to be addressed later if you are tired or busy but be aware that you might not feel treated with the same kind of respect. The more you give the stronger you will feel inside because you will be standing by your own integrity. 
  9. Be careful of unwarily patronising by affirming achievements relative to the accomplishment or performance and to your previous everyday life. 
  10. We are supportive when we acknowledge and accept another’s perspective.
  11. Think out-of-the box – how can we both be right? How do we get a win/win here?
  12. Encourage safe independence and discuss changes rather than insisting someone relinquish their usual role. They may not understand safety in which case you might need to use distraction techniques.
  13. Think about what has worked before and use it again. Discard methods that didn’t work. 
  14. Remember that you  have no experience of living with a brain injury or with someone who has one. What you initially think about your loved ones experience will possibly not relate to the enormous upheaval and losses they are going through. 

There really are vast differences between everyday senselessness and what is happening to the person you love. For example, if you can’t recall where you put your car keys because you were in a hurry or distracted you can understand this happening to someone else. But, if that other person is cognitively lost, unable to focus, has extreme memory problems and so on, there really is no comparison so, no, we don’t all do that! It is different and it can be agonising to know how hard you are trying only to continue to fail at exactly the same things over and over.

You will find more details, tips and strategies throughout this site.

There are vast amounts of information about brain injury publicly available on the internet that may help further. It is important to be able to find trusted sources and to know what to believe as every brain injury is unique and so too is every observation.

We recommend the books and blogs by:

Rosemary Rawlins

Joel Goldstein

General introduction – the inside of living with brain injury

Some people wake up to brain injury after a trauma or medical procedure with little memory of how they got there.

While memory loss is reasonably easy to spot, sometimes family and friends will assume that other effects, such as mood changes and confusion, are related memory problems or even to a stressful period that predates the injury or disease.

While stress and memory issues can form part of the equation, they don’t necessarily create the whole picture. The cause of each behaviour change can be complicated and multifaceted.

There can be a tendency for families to overlook the cognitive and executive changes that have occurred, because sometimes people may erroneously assume that something within their own comparative experiences is happening.

Here we explain what it is like to live with a brain injury so that you can identify with some of the problems you have but may not be aware of.

This short text will help you know other people go through similar experiences to you. 

Early experiences of Brain Injury

Those of us on the inside, i.e. those of us trying to make sense of the world following a brain injury, can’t always explain why we are responding or behaving as we are, and may struggle to put the record straight.

It can feel like you are doing this all the time – trying to get someone else to understand you.

Do you ever feel like this? Sometimes it feels as though the other person isn’t listening to you or is judging you. 

Sometimes it feels like they have the wrong end of the stick even when they are telling you that you don’t understand.

You might struggle with finding the words or descriptions you need to explain what you are experiencing. In time this improves, but until then you might need to do things you wouldn’t usually have. 

For example, you might need to write things down now. You might reject this idea even if you are intellectually aware that you have memory problems since your brain injury because you didn’t need to write things down before.

Many of us think and feel like this because sometimes a brain injury makes it difficult to absorb what we know or think, into what we understand and are aware of. 

If your Granny had memory problems would you encourage her to write things down? Of course you would. 

The way we perceive things after a brain injury can be misleading because it can be hard to notice what functions your brain can’t do now. 

It can be impossible to know what problems our brain injury has brought to us, and at the same time, we can still feel like things should be happening the same way as before. 

Recognising the disparity between our intentions and outcomes is usual for us. It feels as though everything around you is going wrong despite your very best efforts.

You may feel that you are having to try hard to do everything – including how to think. 

In many ways, losing the pathways to our histories can leave us struggling to defend ourselves. You might feel as though you always have to stick up for yourself now and as though everyone else is trying to tell you what to do.

Does this sound like you? 

Recognising Your Brain Injury

See if you can spot any descriptions you can relate to – 

You may notice some changes in the way you function or behave, but not know why this is happening. 

Other people might want to help you, but you can’t understand why when you are perfectly capable of doing things on your own. 

Other people seem to keep their distance or get cross with you.

Other people tell you that you are doing everything incorrectly or not doing what you have been asked.

You notice that you don’t know what to do or what to wear when you wake up.

You think you have been busy all day but other people tell you that you haven’t done anything.

You often feel afraid, anxious, or worried but don’t know why.

You know something is different, but you don’t know what this is or means.

Do people tell you that you need help but you can’t see why?

Do any of these seem familiar to you?

Are there disparities between what you understand and what other people understand? Does this happen a lot or feel like it is happening all the time?

If this does happen frequently, it might be because the part of your brain that is able to watch or observe what you are doing isn’t functioning. 

How do you find out if this is true for you? 

Try to think of one thing someone told you off about today. Can you see their point of view?

It doesn’t matter if you think they are ‘wrong’ or have misunderstood. What you are trying to do is to see their perspective. Can you relate to what they told you?

If you know something happened but can’t remember what it was, try to notice when this next happens and again, see if you can understand or know about their point of view. 

You can also try this from thinking of a conversation you had. Can you easily see what someone else was trying to tell you?

Your brain may be having difficulty feeding information about your environment or ‘outside world’ back to you.

This is called lack of insight.

Differences in what you believe and other people tell you may mean you are confused between what is known fact and how these facts relate to you. 

Here are some examples:

Having an intellectual awareness of your diagnosis of brain injury, isn’t the same as knowing that your brain is injured. 

Having an intellectual awareness of being unable to tie your shoes, isn’t the same as knowing that you have problem solving issues because of the damage inside your brain.

You may need neurological testing for you, and other people, to be able to understand the changes your brain injury has made to how you think and function.

Getting Help

Getting help starts with recognising you need help, even if you don’t know why. 

You might struggle to explain to other people the things you have noticed. If you go to the doctor it can be a good idea to take someone with you. Book a double appointment so that you have more time to talk and listen.

Allow whoever you go with to describe the differences in you – even if you don’t agree with them.

If you can, try to make a list of the things you want to talk about. 

You should be referred for neurological testing or to see a neuropsychologist. 

From the Inside – Living with Brain Injury

Sometimes, the ideas that people have about us can pervade for years – even when their judgement of us is wrong.

Often, there is no way for us to correct them because we no longer have command of the skills we need to be able to communicate accurately.

Explaining what it is like to live with a brain injury or why you struggle can be monumental.

For this reason, if you are the family member, it is vital to be aware of and respect that the person who best knows what their truth is, is the person trying to work out what that is while being deprived of the tools needed to do it!

Those of us living with brain injuries have a complex array of cognitive, executive, psychological, emotional, and spiritual changes to deal with, both at the beginning, and throughout our journey.

Over time we can will work things out, but until then, it is just as essential to for us to be patient with ourselves, as it is for people close to us to be patient with us. 

New insights and deliberations will likely be experienced and delivered piecemeal over time.

Revelations may be unsystematic and fragmentary as each part of the puzzle may only be found one bit at a time. It doesn’t mean that each piece isn’t the truth – it just means it is part of the whole truth.

Because of this, if you are the family member. try not to dismiss anything and try to respect what you hear. It isn’t necessary or conducive to someone’s recovery to be corrected all the time.

The loss of memories and difficulties with processing and thinking can lead to an unconscious loss of trust in family and friends. You might feel that you don’t trust yourself but not be consciously aware of this and this can cause you to lose faith in other people too.

Confusion happens for several reasons, including difficulty with understanding and processing incoming communication and also the lack of memories that interfere with being able to make a connection. 

People around us may feel that they have to ‘step-in’ or make allowances. While this can be useful on a practical level, if undertaken about matters of a personal nature, it can damage trust and relationships – no matter how well-meaning.

We all want to do things our own way because we have personal preferences and want to use these as a basis for our choices. When people do things for us, it can feel as though we will have to put up with the results they create. 

This can make us feel like victims instead or responsible and independent adults. Although we will inevitably need more time than other people to make decisions, we should be encouraged to work out what we want, and then to have the chance to discuss it to gain extra insight. 

A brain injury can make it impossible for us to see the ‘whole picture,’ whereas those close to us generally can. Try explaining what outcome you want and be open to discussion and listening to ideas. This process may need to be repeated until you feel comfortable and reach agreement with others.

Remember, if you have memory or processing problems you are often starting from scratch; everything will take longer.

Living with a brain injury isn’t 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 – fear can soon becomes an unconscious state of being which envelops you.

To make it worse we have no or little realisation this is happening and have no power to describe our experiences adequately.

For some of us the loss of self-insight is so severe that we don’t seek out help at moments of mental struggle because we don’t recognise we need to or can. 

It can be perpetually challenging to know how to ‘pause the confusion, often we don’t know we need to, and before we know it, we become completely overwhelmed.

Very often, the brain is much too overloaded to make sense of the fear, and the stress cascades into a biological mess of detrimental chemicals and hormones that continue to damage the neurological structures of the brain.

Conclusion

Because the injured brain is impaired, it may not occur to people to try to explain what it is like to live with a dysfunctional 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 reflect

The environment for rewiring and recovery is enhanced with help, gentle guidance and understanding. 

In the early stages:

  • it is confusing for everyone
  • there will be a steep learning curve
  • you may need to learn new ways of communicating

Those on the outside may need to learn to:

  • slow down and allow time for responses
  • allow pauses without being afraid of them
  • facilitate adjustments
  • understand that things are very different
  • accept that what people are saying is right for them
  • allow for any lack of understanding which can help maintain relationships

Those on the inside might grapple with working out what has changed. To different degrees, they will now be struggling through a mire of confusion, and it will take time for them to work out why.

Rewiring is a process that is enforced by routine and repetition.

The previous world of ‘normal’ has changed, and the (previously) established self takes time and patience to re-find.  

Each person will be on a personal journey and will be battling to get through the complex array of executive and cognitive disabilities that block their way to the ‘outside world.’

Maintaining a balance where there are clear differences in behaviour can be difficult. 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 primitive, fight/flight  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 and 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 in the same way 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.

Peer support

Post brain injury there are enormous differences between the experienced and observed perspectives.

 One of the primary objectives for everyone post brain injury is to learn as much as they can. Miscomprehensions are better understood if you can find the right specialists and experts to support you through the journey.

The lived perspective of brain injury is so fundamentally different from that observed from the outside world 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 helped 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 on-line support groups on Facebook. We recommend, ‘Traumatic Brain Injury Healing & Recovery Support Group.’