Understanding What Negatively Affects the Lifeworld of People with ABI

A labyrinth—a winding, twisting path walked to aid reflection—explains the right brain, creative process of ‘‘Keys’ to the ABI Cage’. The process involves imagery, imagination and intuition and an opportunity to vew and review an issue form several directions in several time frames. A labyrinth is different to maze as a maze has just one solution. A labyrinth presents a puzzle to be solved—requiring logical, sequential analytical left brain thinking where memory is vital to emerge.


Keys to the ABI Cage method provided the ‘path’ like a labyrinth for participants to ‘walk’ to tell stories to aid them to reflect on things that had a negative and positive effect on their life. Insiders (people with ABI) and outsiders (family members and professionals) were included for the purpose of triangulation.

This chapter will commence with the superordinate (main) themes and summarise how these were populated by giving examples from the overarching and emergent themes identified in participants’ narratives (see Chap. 6, Fig. 6.​6). This is the reverse to how the analysis was achieved, i.e. it started with words in the first case, clustering them into emergent themes, clustering these into overarching themes and finally superordinate themes. It should be noted that neither the superordinate nor overarching themes were on the ‘talk-about’ cards rather the findings from using these cards could be clustered into these themes.

While we cannot say that the themes exhaust all narratives from all people with ABI, we can propose that for this sample of 36 people with ABI the themes derive from their narratives and, that as the work continued, fewer and fewer new themes emerged. This provides some confidence that the data was becoming saturated for this sample and that we can confidently report the recurrence of experience of study participants.

7.2 Factors that Negatively Affect the Lifeworld of Participants with ABI

Long term recovery from brain injury is not a medical problem…Medicine has very little to offer in this direction. The way forward lies in education…the power for recovery lies within the injured person as they relearn their daily living skills. Education is the key, (Freeman, 1998, p. 14).

The arrangements and methods for this study have been premised on these words. Two superordinate themes were eventually identified as characterising overall, the things that negatively affected the lifeworld of people with ABI:

  • ‘ABI damages not only the person’s brain, body and beliefs, it also damages their hope, honour, trust, safety and security’;

  • And ‘Learning with ABI is hard labour—it is a struggle to learn when the person is afraid, ashamed and isolated’.

In the remainder of this section, these emergent themes and their relation to the four overarching themes are explored. The superordinate and overarching themes are shown in Fig. 7.1.


Fig. 7.1
Study superordinate and overarching themes

7.2.1 Loss, Lost and Trapped

The majority of participants told stories to illuminate the overwhelming effect of being a ‘different’ person as they struggled to function. They were overcome not only by physical, mental, communication and emotional difficulties and pain but they were also overpowered by a sense of loss.

I wish I could have one more day without a brain injury just to be the person that died once more — to be with my family the way I used to.

In their struggle to make sense of themselves, most participants told stories about how they constantly compared their old and new self: how they thought they deserved to be treated by people including by their family, friends, health and legal professionals and how they perceived that they were actually treated; and their slow recovery progress compared to the effort they were making. Many stories demonstrated that life prior to their ABI seemed ‘more fair’ than their post-ABI life, where they had no choice and little power. The complexity was in many ways, therefore a product of comparing a new with an old me as shown in Fig. 7.2.


Fig. 7.2
Comparisons to the ‘Old’ and ‘New’ me taken from the data

The difficulties expressed in Fig. 7.2 also cut the person off from normal people, isolating them, making them feel like an alien. Without a personal identity and clarity over their own self, the presentation of self becomes impossible and the self becomes constructed to reflect and respond to the ways others treat them. This ‘looking-glass self’ was not a self with which the person felt happy! A sense of bewilderment, loss and confusion because of what people said and of the ‘stranger’ who had taken over their body and life was complicated and demanded all their attention.

When I don’t understand what people are saying I feel frustrated … embarrassed

Self-doubt was common with self-trust a casualty as well as trust in other people, experts, fate or luck.

I’m frightened because I can’t trust myself and I can’t trust other people and I can’t trust health professionals.

Indeed a third of participants felt ‘scared’ or had ‘lost trust’ in their families. Fred was ‘physically attacked…smacked by my wife’. Melissa was distressed that her parents would accuse her of being lazy but she was trying hard and suffered from ‘bad fatigue’. A majority lost trust in their friends who said they ‘seemed OK’—Pete wished he could reply ‘Oh yeah. Swap places with you, then.’

Distress was expressed at the perceived lack of understanding from professionals and at the pessimistic prognoses they delivered. Their stories inferred that they thought professionals would be ‘the one group of people who would understand’. More is said of the professional group later.

For those who had religious beliefs, this had both a negative and positive impact on their lifeworld. Some participants had lost trust in God, and many were struggling to make sense of why God was punishing them, or they queried whether God had caused their ABI to teach them a lesson, or if they could trust God to protect them in the future.

Man plans — God laughs.

The loss of trust (in themselves, others, God and the future) negatively affected their lifeworld.

As we proceed in this chapter, we shall highlight the inherent forms of learning that can be identified in the narratives as exemplified in Fig. 7.3.


Fig. 7.3
Examples of people with ABI ‘learning’

7.2.2 No Longer Like a ‘Normal’ Human Being

Statements from participants indicated a degree of insight into the changes they were grappling with and the ability to compare themselves to a ‘normal’ human being. But none of the participants referred to themselves as disabled, although Goodley’s (2011, p. 1) statement ‘to be disabled evokes a marginalised place in society, culture, economics and politics’ could be applied to them. However, as they told stories and compared themselves to other ‘normal’ people, this comparison had a negative effect on their lifeworld.

The four emergent themes: ‘Can’t function normally’, ‘Can’t understand and communicate normally’, ‘Can’t control my emotions normally’ and ‘weird and abnormal issues’ clustered together to form the overarching theme ‘I’m not like a ‘normal’ person any more’.

Having balance problems and being ‘clutsy’, ‘dodgy’ and ‘fineline’ made activities such as walking, driving, socialising and travelling a problem with impaired vision accentuating these issues for some. Several participants described how in the early months after their injury, they were ‘freaked out’, frightened and disturbed when they lost the basic ‘normal’ ability to know how and when to eat.

I forgot to eat. I didn’t have any appetite; I didn’t know when I was hungry and when I wasn’t.

They found themselves dribbling and choking, because their ‘brain had forgotten how to tell the throat how to swallow’. Meg still felt like a ‘freak’ as she still had to put her fingers down her throat to help herself swallow. Loss of smell and taste was further proof that they were no longer ‘normal’. Despite fatigue, many participants had difficulty sleeping at night or, as one participant expressed it, her brain ‘could no longer go to the place of sleep’.

The inability to speak so that other people could understand was very upsetting.

I have a great deal of trouble enunciating words — people find it hard to understand me

Holding the ‘talk-about’ card with a topic in their hands helped some participants to hold a conversation about how they had difficulties speaking, listening and understanding. Several participants discussed their puzzling inability to use the telephone, yet they did not remember this or ‘have the words to ask for help’ at an appropriate time.

It’s weird telling you … because you understand what I’m talking about … But then you forget that you couldn’t remember to use the phone, so you couldn’t actually get any help anywhere, because you couldn’t remember what you couldn’t remember. I think, looking back now, I thought there was something really bad, wrong, and that I’d better not tell anyone. No, not that I shouldn’t tell anyone, but that I was embarrassed, ashamed … I don’t know, I think I was terrified.

The perceived ‘lack of normality’ also stretched to controlling emotions, a category sufficiently large and important to stand on its own. Emotional outburst, uncontrollable laughing or crying was referenced many times:

I cried all the time…at the drop of a hat. I was very emotional

I went sort of the opposite, I just found everything hilarious. I was really extreme. I’d sit there and just laugh at everything. Well, I couldn’t help myself.

The participants spoke of perplexing ‘invisible’ issues—‘left neglect’ where they ignored the left side of their body; double or distorted vision; and not knowing who was talking.

If I was granted a wish today, it wouldn’t be to have my sight back. It would be ‘can I have my left side back, to make me whole again’. But the loss of sight I can overcome, workaround. The left loss…

If a person was in the blind spot, I didn’t know that they were there…I couldn’t see them, but my body could sense they were there and I’d move away, so I was forever falling over. So I’d say … “walk over there, you’re on top of me, get away from me”, and she couldn’t understand.

The overarching theme ‘Not like a normal person anymore’ therefore encompassed everyday functions, understanding and communicating, emotional control and weird issues and had a significant impact of their everyday lives. When taken together as a complex, these issues produced lives in which, without support and understanding, it became difficult to move forward with even the day-to-day decisions much less those pervasive choices that one makes to seek a better life (Ramcharan et al. 2013). Once again learning took place during the interviews (Fig. 7.4).


Fig. 7.4
Examples of people with ABI ‘learning’

7.2.3 Grappling with Emotional Fallout

All participants identified with the ‘Sad’, ‘Mad’ and ‘Bad’ ‘talk-about’ cards and their subsections. The employment of these three small everyday words provided a ‘softly softly’ approach, a non-psychological, non-professional way to broach profound, personal, serious matters. Participants ‘got’ the way the words were used, and the words got them talking. Several participants requested the cage door be unlocked so they could remove and hold the crushed drink can saying ‘This is me, my life’.

Many participants expressed disappointment with themselves and their lives, because they could now no longer achieve their dreams, the fact that day-to-day survival was difficult, that financially their future was changed for the worse: that they no longer had careers they had loved, marriages had broken down—life was no longer predictable or controllable.

Disappointed is an interesting word, it’s too mild for what I felt. I was probably disappointed with myself, disappointed with the doctors, and disappointed with everyone and everything for a while.

Um, sad, distressed, and absolute abject despair and futility. Because I think brain injury it’s the unknown as well.

I’m so disappointed with life — my illness wasn’t my fault.

They were ashamed and disappointed. They talked about feeling depressed, hating themselves, having contemplated suicide or disappearing, feeling powerless and the reluctance of professionals, family and friends to discuss their suicidal feelings. Many participants also identified with the ‘distressed’ ‘talk-about’ card—that the ABI experience was distressing.

Anger was a big problem for many participants, and they told stories of their terrible anger and rage. Anger was expressed at the way they had been treated by professionals.

I was very angry, I had terrible anger

I’m so angry at the way I was treated — all professionals, even alternative ones are arrogant.

Another participant explained about their terrible uncontrollable anger where they wanted to put their hand through a glass window, and how they would kick things and hit their partner.

However the majority of respondents reported they had feelings of frustration, they felt annoyance rather than anger—at themselves, at situations they were put in because of having ABI and their loss of choice.

Probably mad/frustrated — that’s brain injury in a nutshell.

Oh God I was really frustrated.

It drives you to distraction… trying to make your brain work.

All participants placed the ‘Frustration’ ‘talk-about’ card in the ‘Do’ box. ‘Mad/frustrated—that is brain injury in a nutshell’ and their stories told of the struggle of trying to cope with a brain and body that does not obey the person—of when they cannot understand why they behave in a certain way, when they are forced to rely on others, or to complete ordinary tasks when they are blind.

Many participants said that in the years following their accident they had believed they had gone mad or insane that they often questioned if they were crazy, mad or nuts. They thought that everyone else was mad: Sharon said she thought the professionals were trying to make her feel insane on purpose, or, surmised that was what they were doing, was ‘part of a stupid IQ assessment’. These participants were profoundly affected by believing they were insane.

Most participants expressed guilt in some story or other—either about pain they were causing their family who they felt they had ‘let down’, for what they had put their family through, because they had not avoided the accident, because they could not make themselves better or because they had ‘let’ their ABI affect their life too much.

I feel guilty because I can’t trust myself — I’m not dependable — with good and bad days my thinking works in stops and starts.

I feel bad because I’m slow and I can’t concentrate, I can’t understand things.

Over half the participants felt guilty they had not ‘tried hard enough to make themselves better’ as they grappled with the emotional fallout of ABI.

Many male participants expressed feeling like a ‘bloody idiot’ when they did or said the wrong thing, poor balance and unsteady gait led to accusations of being intoxicated, stereotyped as a loser and declined entry to bars. Women felt bad about other issues such as doing and saying the wrong thing; one participant elegantly called this the ‘loss of social graces’; others would query if the inappropriate action was due to their ABI or whether they were ‘just stupid?’ Not being able to complete simple tasks such as doing up their buttons resulted in them ‘feeling pretty stupid actually’, being embarrassed because they were ‘slow and can’t concentrate or can’t understand things’. The participants were ashamed, afraid and isolated as a result of their emotional fallout.

The stories told, when taken together, indicate an unremitting struggle to claim (back) an identity; they speak of the anger and frustrations of seeking to be understood and to understand others; they speak of the unremittingly negative responses and rejection of who they are and how they are; so too do the stories highlight how this reduces their mobility, their social interaction and accessing physical environments. In each life area, the downward spirals which interconnect us to being social and to being human are crushed. The frustrations, the emotion represent a cry of hope against the barrage of negative events in their lifeworld (Fig. 7.5).
Feb 4, 2018 | Posted by in NEUROLOGY | Comments Off on Understanding What Negatively Affects the Lifeworld of People with ABI
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