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Loss of Self-Awareness

Loss of Self Awareness

*What is loss of self-awareness?

*What causes loss of self-awareness?

*How it feels

*Difficulties understanding

*What is going on and how to help

Common misunderstandings

Loss of self-awareness is more common than many people realise. Observable clues can often be muddled up with other cognitive, emotional and behavioural outcomes of brain injury. Understanding what is happening can be confusing.

The general lack of knowledge and understanding about the loss of self-awareness can be instrumental in causing rifts in relationships and can create a lot of confusion. Understanding this complex outcome can help people manage better. Crucially, many people living with the loss of self-awareness may not be able to investigate what is happening to them – they may need directing to this information.

It is essential to allow people living with brain injury the time and space they need to process and understand the information given on this page. It may also be necessary for them to re-address this material many times, often over extended periods, before they begin to recognise the realities of their struggles.

If you have a brain injury and someone has directed you to this page, then it will have been because they want to help you to gain a greater understanding of what has happened to you. If you are struggling to recognise how any of this relates to you, then you may need further help from a neuropsychologist.

Psychological denial is a different problem to lack of self-awareness. Your GP will be able to refer you for specialist help, and it may be beneficial to take a family member or friend along with you in case you forget what you need to ask and why.

Lots of things happen to people following a brain injury that they have no control over. Changes in thinking and behaviour following a brain injury are the result of physical and biochemical changes in the brain environment and are not a failing of the person affected.

Introduction

Imagine what it would feel like to find every single situation you find yourself in to be entirely new to you. For those living with a brain injury each meeting and conversation they have, even with the people they are most intimate with, everything they try and do and the whole world around them seems as though nothing like it ever happened before.

Retained knowledge may fill in part of a gap; for example, someone may know they are looking at a bird or a reflection of themselves, but, at the same time, there is no more information. The missing information would usually bring a sense of awareness that in turn brings a feeling of familiarity – without it, both fear and curiosity take precedence. People become driven by totally new impetuses as they relearn everything about the world around them all over again.

It is difficult to describe how the loss of self-awareness affects people. Understanding what it means, and is like, to live without any links to previous personal learning and experiences is unlike usual human experiences. What is missing are the experiential memories and innate and learned beliefs that bring us not only a sense of acting from the self but also an intimate and fully conscious understanding incorporating all the fine details of our intentions and motivations. People may no longer know ‘why’ they do or say anything.

It is episodic memory that establishes a link between who we have been and who we are today. With these links erased, people live in a moment that is devoid of historical interaction.

There is little information about the loss of self-awareness, and often this distinctive impairment is confused with the loss of insight or self-identity that can also occur following a brain injury. The experience of loss of self-awareness is entirely different from either of these. For those who also experience loss of insight or self-identity at the same time as a loss of self-awareness, the sense of deprivation can be so devastating that it can feel as though you have lost your soul.

Experiential memories

The following text is a description of experiential memories as they should be and the role they play in our lives. Those of you who are uninjured will recognise the significance of how our history plays out in our everyday life, while those of you living with a brain injury may find this information triggers a profound recognition of what may be missing in your understanding of self.
As we go through life, we learn from everything around us. The brain conceptualises this learning and makes it personal to us – our experiential memories are both intimate and unique – they belong to us alone. They reflect our own beliefs, attitudes, and personality. They reflect our unique thinking patterns – including the vast patterns and skills of the subconscious mind. They reflect our personal history, our psychology, and psyche.

Our experiential memories knit our inner world together and create a sense of familiarity, predictability, and safety. We feel comfortable with the thinking voice in our head because it ‘says’ things the way it always has done, and this brings reassurance and confidence in our selves. We know what we are capable of; we know our strengths and weaknesses, our likes and dislikes.

We know why we love the people around us, and we know who they are and everything we need to know to maintain strong relationships with them. We know their history, our sacred moments of love, empathy and sympathy, our shared joys and pleasures.

Our experiential memories allow us to be introspective and to know ourselves. With our history intact, we can contemplate our beliefs relative to our lives and wishes. We can freely examine and analyse our motivations and intentions and hold stability when we are soul-searching and contemplating our broader environment and the universe.

We know what everything means to us – we instinctively know our innate beliefs and the differences between these and our learned ideas. We can question ourselves and investigate areas for improvement and growth through self-reflection.

We can do all of these things freely and with clarity because every moment we have ever lived is beautifully orchestrated and choreographed by the subconscious mind to support who we are and who we are being.

We can learn and grow because we have the data we need to be able to compare and make choices. Our experiential memories are very much a part of who we are.

The loss of experiential memories

Understanding for families

Severe brain injuries don’t always have visible signs of physical impairment, such as difficulty swallowing or limb spasticity. All brain injuries are unique, and which areas of the brain are damaged will predict individual outcomes. There are no distinct common outcomes, and very often people with physical dysfunctions may retain cognitive skills and a strong sense of self, so it is essential to look at the individual and to avoid making assumptions and jumping to conclusions.
A severe brain injury can wipe out experiential memories like a wet cloth washing away information on a blackboard. It leaves a sense that the brain is full of black holes; there are huge gaps where ‘you’ and your life should be.

When experiential memories are lost, there are many knock-on effects. For example, because there is no relative personal history to call upon the ability to find inner strength can become extremely difficult. For instance, you can’t tell yourself that every cloud has a silver lining if you can’t access the data that shows you when you have considered this phrase in the past and how and why it was useful to you. When the links are gone, you can’t even remember the phrase.

Our beliefs enable us to keep going and allow us to bounce back. For example, if you believe that there is a purpose behind every experience, but have no access to all the times you witnessed this as a personal reality in your past, because there are no linking experiential memories, then this belief no more comes to mind at a time of need, than learned anecdotal idioms.

You are left bereft and empty. You continuously run on auto-pilot without ever being able to pre-imagine or pre-empt future events and without ever having the opportunity to self-examine behaviours, outcomes and consequences.

The auto-pilot runs your entire life; because the injury erased many of the previous filters, everything you say is an unconsidered habit or best guess. People have no control or any data to deliberate.

Signs of recognition

Understanding for families

Initially, it can be impossible for people living with the experience of loss of self-awareness to know why things are so different for them. They may know that their brain works differently but be unaware of any details. It can take many months or years for people to be able to start the process of regaining personal insight, and one of the main reasons for this is the inability to conceptualise clinical descriptions of this outcome.

Where there is no medical support, a lack of knowledge amongst family and friends may also inhibit understanding and inadvertently cause confusion and longevity of the problems that come with the loss of self-awareness.

Understanding for people living with brain injuries

For those of you living with the outcomes of a brain injury browse through the following. Look for any statements that you recognise to be substantive of your experiences and struggles. Acknowledge the items which describe how you feel and experience. Recognition of your difficulties is an essential first step in rebuilding self-awareness.

  • Do you have difficulty detecting problems and knowing when they occur? When this happens, it may feel as though, despite every best effort, everything you try to do goes wrong. You may also find that others often tell you that you have made a mistake and you do not understand what they mean. You may feel criticised and as though people are not explaining things to you or as though they have misunderstood you.
  • Do you find yourself going to great lengths to explain what you were doing and what your intentions were? Feeling misunderstood may manifest as feeling frustrated that the people around you no longer treat you the same. You may feel as though people no longer know who you are and as though they are making false assumptions about you. You may find that you often feel hurt because people reject you or you may recognise that you are often in confrontational or confusing situations.
  • Do you commonly find yourself unexpectedly feeling out of your depth? You may notice that things that you thought you could do go wrong, but find yourself unable to understand why.
  • Are there times when you feel as though people are lying to you? You may feel as though people are always getting the wrong end of the stick and as though they often blame you without valid reasons. It may feel as though you did nothing wrong and that people are rash, thoughtless or unkind. It may also feel as though people are exaggerating their feedback or misconceptions to save face.
  • Do you have problems with defending yourself? You may commonly find yourself wanting to stand your ground but be unable to bring to mind the information you need to help you feel understood. Difficulty thinking may bring feelings of being overwhelmed and as though you have to process too much information. Situations may often seem complicated or as though they are unresolved and have unsatisfactory outcomes.
  • Are people always trying to correct you? You may often feel as though you are quite happy in your world and commonly find yourself wondering why people interfere. You may feel as though there is no need for people to correct you and that they are being over-critical or have failed to understand your motivations or intentions and that it is this failure causing the problems.
  • Do you struggle with bringing needed information to mind? It may feel as though lots of your history is missing and though parts of you have disappeared. You may struggle with remembering and using metaphors. You may fail to substantiate arguments because you cannot find reason or logic to help you with your reasoning.
  • Do you often feel bereft and as though you are catapulting from one moment to the next? Feeling as though a bottomless well has swallowed all of who you are, can leave you acting like a cat on a hot tin roof. The loss of personal history can cause people to feel empty inside, and this can add to being unable to focus on a situation. You may want the feeling to go away or may wish to be left on your own to gather your thoughts.
  • Do you struggle with feeling empathy or emotion? You may be aware of emotional responses, such as anger or pain, but be unable to describe how or why you think or feel a certain way verbally. You may recognise that people may be cross or irritable with you more often but be unable to understand their perspective or to identify the impetus for their behaviour. You may often feel confused and turn to distractions without being consciously aware of doing so.
  • Do you feel physically isolated from life? You may perceive that you are stuck on the periphery of life hanging on by your fingernails. You are there but not included and feel as though you have become invisible. You may feel unconnected and as though life is happening at a distance.
  • Do you feel left behind and as though some mechanistic blind driver has taken over? Blindly stumbling from one thing to the next can feel as though things happen to you rather than happen as a result of your choices. It may be that you sometimes notice when you are unconscious of when, how or why you have made choices or decisions making it seem as though an intruder is in charge of your actions.  It can feel as though the ‘real you’ is being pulled behind on a gurney.

Some more questions to consider –

  • Are you consciously aware that an event that happened to you injured your brain?
  • Do you feel as though your diagnosis of brain injury is a label that you wear rather than fully knowing and being conscious of the changes that have happened in your thinking?
  • Are you able to apply ‘my’ to the knowledge about your diagnosis?
  • Do you know consciously and have an awareness inside that your brain is hurt?
  • Is the knowledge meaningful to you?
  • Are you able to comprehend the changed realities your brain injury has caused?
  • Are you aware of any changes in the way you can ‘hear’ your thinking voice in your head? Does it sound familiar or the way you expect it?
  • Does it feel as though your subconscious mind is no longer helping you?
  • Are you always getting things wrong and find you are forever in trouble without knowing why?
  • When people tell you things, does it feel as though they have no understanding or as though they are wrong?
  • Do you feel spiritually disconnected?

Your answers or any recognition of familiarity with the statements will indicate the degree of your loss of self-awareness. If you agree that much of what you have read is descriptive of your experiences, then you must speak to your doctor and ask for a referral to a neuropsychologist. If you are undergoing rehabilitation, you may need to try to start changing the way you listen to your neurological specialist(s).

Problems with rehabilitation can occur in people who are unaware of how significant the impact brain injury has had on you because of the failure to understand what is happening and why. A lack of self-awareness can cause us to be inadvertently uncooperative or to fail to apply ourselves to therapies simply because we are unaware that a problem exists.

Overcoming any lack of self-awareness is always going to be tough. The ultimate goals and motivations to get better are to return to life and to regain the familiar thinking voice in our heads and a renewed intimate sense of an encompassing self.

From the inside – how the loss of self-awareness feels

Living with a loss of self-awareness can initially bring about feelings of artificial autonomy. Not being able to recognise problems as they occur can give people a false sense that all is well with the world.

When stressful situations do arise, they often prompt extreme reactions akin to a pre-schooler throwing a tantrum or stamping their feet. And, indeed, the experience of this can be just as fleeting when coupled with short-term memory issues.  The blissful world has been rudely interrupted!

Beneath this lack of awareness, an unseen monster dwells. Although the person may move on, oblivious to unsolved issues, these remain invisible and yet burn at the soul beneath the surface.

When the same issue arises again, it can create confusion; a reignition of unresolved frustration and anger that hasn’t gone away. That a recurring problem needs confronting is mind-boggling, especially to a person who previously dealt with controversy in a responsible way. The unconscious expectation is that whatever arises will have been addressed already or is seemingly entirely new to them.

A lack of awareness means that someone is unable to interpret the external world in the same way. Unconscious expectations can exist; how you feel on the inside should be an accurate reflection of what is happening in the outside world. When life proves this to be a dichotomy, a problem arises – do you believe how you feel, or do you try to understand what is happening?

When situations and others are persistent, the intrusion can become unbearable.  The greatest need is often to be left alone to figure out the new alien world. Interruptions to this, however well-meaning or essential, are unwelcome.

As time moves on and short-term memory improves, people can become more aware of recurring difficulties. Trying to understand the outside world gains more attention.

It is at this point that realisations of the severe degree of impairments and limitations start to hit home. The impact can be devastating to the ego and sense of self. It can feel as though you have lost your soul.

Amnesic qualities and a pattern of being unconcerned turn into a perpetual nightmare where the person begins to regain their footing in reality. There may still be no inner questioning; a greater recognition of the existence of an external world that you know little about can be soul-destroying.

It is at this point a person may first realise the impact the changes in their behaviour has had on others. The heart can break for the unintended pain and difficulty caused to the people you love.

The sense of responsibility is immensely overwhelming and can take a long time to resolve and come to terms with on many levels. Recognising it is the brain that is broken and not who you are is of paramount importance at this stage.

The loss of self-awareness cuts deep into the soul. This impairment can affect people very profoundly. The loss of everything you ever previously believed in creates profound changes in the psyche; changes that take time to overcome and to rebuild.

The emotional and psychological pain erupts from deep areas of the automaton; from unconscious bewilderment and unknown stores of profound grief.

Realising that all previous connections are gone is the beginning of a long road to restoring who you are. Becoming consciously aware of this need is imperative to the importance people give to their inner world, thinking, attitude, understanding and desire to ‘come home’ to the familiar self.

Loss of self-awareness can leave you without faith or hope. Not because of an inward wobble or self-doubt, but because the connections were all erased. People can feel entirely energetically isolated from everything around them.

Cruelly detached from your life experiences and personal history you are no longer able to empathise. Life becomes a list of facts and knowledge; much of which is also missing.

What results at this stage is not the outcome of thought – it is the product of the absence of thought.

It can feel as though the ‘real you’ was beamed up by Scottie when you weren’t looking. You have no idea what is missing or what needs fixing; all you know is that life is very broken.

In your place, a featureless android carries out your business. Mechanical in action, devoid of relational feeling, this android masquerades as the lost you. With only basic programming, this android struggles to learn anything new or to see the world in all dimensions.

Perspectives become stuck and rigid because there is so little data left inside, and so much less is processed and absorbed. This outcome isn’t related to a person’s character unless they previously exhibited signs of inflexibility. In these cases, the injury itself exacerbates previous traits – it doesn’t invent them.

The role imagination plays in our lives is often underestimated. The mechanics driving this vital component in those living with a loss of self-awareness disappears. Creativity and flexibility are crucial to future planning, visualisation, problem-solving and pre-empting consequences. Sometimes executive dysfunction occurs as much as a result of lost history and self-understanding, as it relates to physical damage to the frontal lobes.

Recovery from a loss of self-awareness can feel as though you are starting all over again. Many people report that it is akin to growing-up and have experiences of moving back through life from the conceptual understanding of a pre-schooler.

You begin re-learning in crude and rudimentary ways. As time passes, how you learn grows with improved intellectual capacity. It is essential to understand that brain injury doesn’t alter or affect intelligence – it changes how it can work.

A brain this severely injured is slow to learn. This outcome has little to do with plasticity and rewiring. It is associated with how the brain naturally develops through childhood.

In the case of loss of self-awareness, rebuilding experiential memory is acutely linked with re-learning. You have to live life to re-establish your identity and history. It can take many years to re-establish common sense and wisdom because the brain needs new experiences to work from to realise conceptual understanding. You learn from scratch.

The head always feels muddled because it is handling extraordinary amounts of data. The brain itself struggles with working out why it doesn’t work as it did before. Whatever feelings you once had seem lost to the past, but once you gain enough ‘more life,’ links can be reforged.

Living with a loss of self-awareness can feel as though you lost ownership of your previous life. In short, it can feel as though you have lost your soul. It can feel as though your neck has been severed –  disconnecting your heart from your brain.

Probably the most crucial thing to understand is time allows for understanding and reconnections. There absolutely is hope. Never underestimate the severe experiences a loss of self-awareness bring and be patient, make allowances, give the benefit of the doubt.

From the outside – how the loss of self-awareness may look

From the outside perspective, it can seem as though the person you love is now ‘cold’ and indifferent, and as if they no longer care about what you think or how you feel.

It is as though they swing from one idea, thought or opinion to the next like a metronome that is totally out of balance and control. People can seem erratic and ungrounded, and as though they fire off at irrational tangents at the slightest change.

Within the same context or moment, their moods can swing from what looks like the most profound sadness, to indifference in the blink of an eye. People often have no idea what you are talking about if you question these eccentricities.

It can feel as though you never know what to expect and as though you can no longer predict probable responses. You struggle to find ways to explain the changes which are so apparent to you, and to which your loved one seems blind.

It can be scary to try and communicate with someone who seems flighty and unreasonable, who appears not to want to listen and as though some deep and unmoveable denial has taken complete hold.

It can be upsetting for those on the outside when they no longer sense understanding and many people report this as uncharacteristic indifference or as personality change. They seem to be lost and to be making different choices to before.

Difficulties in relationships arise when the person you love seems unaffected by significant life events that are happening to you; it is tempting to back off and leave them to it.

What is really going on – for families

Inside the person you love, there is a disconnection from data that supports who they are and who they can be. They can’t change this. No amount of feedback will make the penny fall into the slot and create an understanding about the differences you see until the person has generally rewired and relearned enough to be able to include your feedback in their thought processes.

It is a complex process because so many areas of the central nervous system are involved. Difficulties are compounded by what happens due to physical injury and biochemical changes in the brain and body.

What looks like coldness is the struggle to find connective information that would enable someone to get into the moment with you. People get stuck in a void where no thoughts are happening;  the person is reacting automatically from the reptilian brain.

There are no filters, so what is stimulated by the incoming information, is an autogenic and unconscious response. It lacks the input of the subconscious mind that usually chooses and controls output based on experiential memories and beliefs held, and should also include episodic memories about you.

The best way to imagine this is to picture yourself in an examination room trying to answer a paper on a subject that you don’t know. This blindness is what it is like for people when they are communicating with a loss of self-awareness. They don’t know anything, and so have nothing to give. They want to. The impulses and drivers that come from the person you know are still there and working, but they fail to find anything connective to present to you.

In the absence of experiential memories it can be like facing a ‘whack-a-mole’ machine that has been ramped up to work ten times faster than usual, but what is happening is a desperate attempt to present well and to appear ‘normal.’

There is never a moment that vast amounts of effort are not being made to try and be ‘normal,’ and this is why people can seem so flighty and irrational. They are trying to gap fill and will present one lot of episodic data after another in the desperate hope that something will be ‘right’ and will fit the moment. You will have facts and knowledge spurted at you instead of anything rounded and meaningful because this is all that is available.

Things that help restore the self

For those who are struggling with a loss of self-awareness, there is often very little information, and sometimes there can be a professional failure to address the severe difficulties people face. It is vital to seek out therapists experienced in brain injury.

It can be difficult for people to recognise which impairments they have. Systematically working through known impairments to try and decipher causes of outcomes can be a fools’ errand when it comes to complex brain injuries because so many of these have grey areas and overlap. For example, fatigue, difficulty concentrating, and not believing a problem exists, can have different causes in each individual. Overlaps exacerbate the challenges people face.

With a lack of self-awareness, people sometimes have a feeling that something is missing or awry and are relieved when given information that helps them understand what is going on. Bear in mind that understanding doesn’t necessarily produce immediate change. It can and does take time for new information to be processed and assimilated.

Because everyone is affected uniquely, what works for one person may not particularly help another. Some people may re-forge links, whereas others may need to start rebuilding them from scratch.

A lack of insight can aggravate problems with understanding just as an inability to reflect can make it more difficult for people to recognise their limitations and reduces their ability to assess the implications this brings.

Once someone can recognise what causes their feelings of loss, they can begin to pick up on cues. Awareness can develop as people begin to consciously notice frequent setbacks, rather than ‘simply being’ frustrated by them, and they stop using unconscious avoidance to try and limit incidences of error. There is a realisation that the fastest path is the direct one.

In effect, to rebuild experiential memories and redevelop the fundamental aspect of self through personal learning and assessment, people have to live through a series of events that bring opportunities for this to happen. What is very important is learning techniques that help with recognition of opportunity.

Teaching yourself to pause when feelings of misunderstanding arise can help with this. First, you have to be able to recognise instances of feelings and emotions arising, and then you need to teach yourself to focus on events and make considerations. A great way to do this is to use reflective techniques which, when used regularly, help people to rebuild a foundation of personal opinions and life understanding and knowledge. You can begin to rebuild your sense of self by bringing awareness to experiences.

In other words, when you experience something, such as noticing someone was upset with you, rather than letting the opportunity to understand it go – you can teach yourself to contemplate causes and consequences so that you can learn. Keeping a journal can help with this. Eventually, you begin to rebuild the database of experiential memories, learn to slow down and use these spontaneously and reflectively and begin to feel the mind become more familiar once more.

Focusing on beliefs can also help. Our beliefs underpin much of our activity, reactions and ability to cope. It can feel as though you are brainwashing yourself when trying to re-install innate beliefs in your thinking, but, bear with it, keep going, and very importantly, let go of trying to force change. The goal is to move towards the home square no matter how many times you slip down the snake. Pick the dice up and throw it again.

Expect peaks, troughs and plateaus. Try to notice when regressions are linked to stress and know that you will move through this. All of life is temporary, and change is an inevitable part of it.

For those on the outside: try to understand that any input you give may take months or years to be realised, acted on and followed. Release and let go of your frustrations and trust that eventualities make their way into the new tomorrow.

Also read: ‘Other Outcomes

“Cognitive rehabilitation is effective for mild‐to‐severe injuries and beneficial at any time post‐injury.”

Mount Sinai Journal of Medicine

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