People with ABI: overview of findings of factors that positively affect the life of people wirg ABI
The overarching theme of ‘hope’ encompassed determination, wishful thinking and denial. Participants expressed the importance of believing ABI was not going to ‘beat’ them—they believed they would improve, though of what such improvement consisted was, as will be seen, as much to do with a fulfilled and satisfying life (acceptance and re-evaluating goals), as to do with a mended body.
The consequences of giving up hope would mean they would no longer struggle against their difficulties/differences/deficits.
Um, I guess I don’t use the word hope, I just think of it as bloody mindedness. Sheer determination, where I’m mad as hell and I’m not going to take this anymore.
Hang on; I’m not going to let this beat me!
Proving professionals wrong—I’ve proved them wrong in a thousand ways.
There is nothing I can’t do. I just haven’t found a way to do it.
Once again the sense of movement, growth and change are encapsulated both successes despite challenges and others’ views as well as hope for the future. They emphasise the constitutional comparison of concepts which ‘define them as learners, doers, and as successful’. These are the basis of the hope we all carry, not just people with ABI.
Wishful thinking including not believing the opinion of professionals was voiced by some:
They told mum that I’d never be able to walk again or do this or that or have children—Luckily I didn’t believe them—you wouldn’t want to believe would you! (laughter) (drove to the interview, was married with children).
The doctor was quite adamant that after two years you’ve reached your peak—it took away all my hope—I was frustrated because I thought I was going to get better… but then I thought I’m going to improve…
Note that the things accomplished and valued were not about mending bodies. In the first quote, the person was married, could drive and had children. These represent the fulfilment of their capabilities, accomplishment despite the challenge or the opinions of medics or others.
Denial also played a role in improving their lifeworld.
It just went in one ear and out the other,
I’ve never thought about these things
Indeed, some found ways to manage despite their difficulties and excused such difficulties by saying ‘everyone does silly things’.
For many of these participants, ‘hope’ involved what we have termed ‘wishful thinking’, because it involved a refusal to accept the considered opinions of professionals. Their refusal to accept that their life would be spent in a nursing home, in a wheelchair or that they could not have children assisted their recovery.
The majority of participants had refused to accept the ‘two-year rule’. They had been informed that the progress will cease or slow down after the first two years but they refused to believe this. Indeed, our proposition is that this is an inimitably medical and rehabilitation view. It ignores all that is required in the social realm. The person’s concept of self lies in their social and community lives, emphasising the need for medics to ‘leave a space’ for this, not to comment upon the body as if it were the world. Fixing bodies is a smaller part of a larger whole. Living lives well in spite of ABI is the key and requires learning and an empathy from professionals about what contributes to setting the conditions for engaging with such learning.
Hope encompassed many characteristics outlined in Seligman’s (1998) ‘Learned Optimism’—the participants had learned to tell themselves that just because they had failed at a given task this did not mean they would always fail in everything they attempted and they could ‘excuse’ their failure or blame something else. They coped and bounced back in a resilient way if hope was maintained.
Several participants talked about how they obtained comfort and security from their religious belief and that this was very important to them. However, concern that God was punishing them was frequently associated with religious belief. Nearly one-third of participants said that nature and the environment brought hope and comfort and a few participants spoke about seeking symbols to show they were: ‘doing the right thing’. This search to confirm their existence and identity is very well rehearsed in existentialist writings, but clearly featured as an everyday experience for many in the study sample.
Participants with ABI could be divided into two groups—half who spoke about how they were loved, supported and sheltered by their family and how their love for their family also caused them to work harder for the sake of their family—so they could have a life. For these participants, the love was of prime importance.
Love is extremely important. I believe that if I didn’t have my family and husband to come home to, I wouldn’t have worked so hard—I don’t think I did it for me, I did it so they could have a life…
and, another key releasing this person was,
The understanding of my oldest and very dear friends and their ongoing support.
The other half of the participants, who did not identify love as a Key, told stories of how they were estranged through divorce, or misunderstanding or lack of understanding. Many in the latter group spoke of animals who loved them unconditionally and who gave their life meaning. Several participants stated that they would have killed themselves but for their love of their animals and the way their animals ‘understood’ and loved them—animals provided the unconditional love they needed to survive. Several participants identified that taking responsibility and caring for their animals had been very important.
I could stay in bed but I have a big black muzzle [of her guide dog] nudging me saying get up and feed me.
My dog understood that I was crook [Australian word for unwell] and stayed by my side.
I think if I didn’t have my three cats who loved me unconditionally, to talk to, I wouldn’t cope at all.
Taking responsibility and caring for something else (my animals)—I think it is very big.
My cats saved my life. I would have ‘disappeared’ but for my cats.
Most participants identified things they loved doing, things that gave them satisfaction, and a purpose. The way they perked up and became enthusiastic about these things showed they were more than a diversion—they were fully engaged with their ‘passion’.
A huge range of such passions were identified: painting, fishing, knitting, going to live shows, writing, going out for coffee or lunch. Some men were very passionate about watching sport, the gym and exercise. Many women participants said they had discovered (or learnt) that doing cross stitch/tapestry/knitting focused their thoughts, calmed them down and they felt productive as they watched their project progress. Several women referred to their craft as their ‘security blanket’ and they took it everywhere.
Participants could be divided into two groups – those who liked going out and those who liked staying home.
I love going out—I’m terrified of my armchair
I love going to live shows
Going out to lunch on the weekend made me feel more normal
Writing all my thoughts down—everything… and they say stop this lunacy and I say I can’t stop…
Painting—art is very important (couldn’t draw before) colour gets me excited
Ah, gardening is a new thing I’ve taken up that I find a lot of peace, as a therapy… it’s a wonderful, wonderful thing
A treat—yes—that’s part of the life process—it has to be achieved—a prize at the end of something. You’ve achieved something so now you can have a treat. Big or not so big—a cup of coffee shared with friends or family
Exercise—Yes so important — I’m convinced the exercise side of things reduced the severity of the damage that was done significantly.
The final category of things people love is things that give people a sense of satisfaction and purpose—helping others—particularly others with ABI. This was most important as it allowed the person to use their sense of empathy and humanity that has been perhaps newly acquired—it is a positive new gift they can give. Participants spoke with pride about their volunteering. May expressed it beautifully:
I’m a volunteer I have a lovely lady to look after. She’s lovely, she loves me, she’s like a mum to me and I’m a mum to her.
Helping people yea…!
I volunteer to help people with disabilities ‘cos I know what it’s like to be in a wheelchair.
Being useful—yes that’s why I do so much—I refer to it as my sense of purpose.
It should not go without notice that what people share, brings people together. People with ABI share an understanding and in doing so understand that rejection by others hurts, that trust between people supports their interaction and growth, that giving of the self produces a sense of accomplishment among many other feelings. If we were to replicate services and relationships that carry similar such features, we might discover the ‘pearls of wisdom’ people with ABI are proffering to the rest of the world.
Love of people, pets and activities helped most participants belong and feel comfortable about themselves. Love by others and for other carried people from a life that did not seem worthwhile to a life with worth and purpose. Meaningful lives which made best use of capabilities and give life purpose were therefore central to feeling and faring better.
8.3 Learning to Understand ABI and Working Things Out
Learning to understand is at the heart of this thesis. It is not possible to ‘give’ people understanding—understanding comes from actively taking on board ideas and information, learning to make sense of ABI for themselves and trying out the ideas before once more adapting their understanding.
About a third of the group spoke about the importance of finding out what other people with ABI have done and the value of peer support. An ABI writing group helped people share ideas, learn new skills and express themselves. Some participants in ‘seeking to belong’ found joining ABI support organisations was helpful, yet others voiced the opinion they wanted to be normal, mixing with normal people.
Gain as much knowledge as you can about your brain injury to help you understand…
If I’d had the CD (Reflection Kit) earlier on it would have helped me to understand that I wasn’t going mad. And it certainly would have given me another way of approaching things too. And perhaps to even ask more questions. Because if I knew that was the situation, then I could relate that to other areas…
What other people with ABI have done—this is massive to me—peer support—my writing group
What other people with brain injury have gotten up to, or survived. Um, it didn’t help to start with, because I was too interested in myself. But later on, to read stories of people who’ve survived was good
Meeting you (Durham) at a conference in Sydney was another moving point for me and the rest of my life, as I feel that it is the survivors who can talk the talk to get others back on their feet after an injury, because we can walk in their shoes.
All participants with ABI had struggled and were still struggling to understand ABI for themselves. Not one participant remarked ‘I found this wonderful web site…booklet…I was given information from the hospital’, or that ‘Dr X explained ABI so that I suddenly understood’. No one spoke about understanding about ABI from information on brain injury support Websites or blogs, although now, eight years after the interviews, more people are searching the web.
All the participants wanted to find out more about ABI. About a third of the participants spoke about reading Doing Up Buttons and gaining greater understanding from reading the story—it helped them make sense of their own personal issues. Almost all the participants said that ‘medical language’ was not helpful in helping them make sense of their experience.
Keys to the ABI Cage helped many participants understand their ABI—one man said that he had ABI for 7 years and he denied it—but the Cage had ‘showed him’ (he had gained self-awareness) and he now acknowledged his ABI; another said if he had seen the Cage earlier it would have helped him to understand that he was not going mad, and would have given him another way to approach things and ask more questions; another participant commented ‘It let me open up my own eyes’. Opening up my own eyes is a wonderful description of ‘learning’.
Participants had discovered (taught themselves) a range of strategies through which they could work things out: for example, ‘patience’, ‘minimal stress’, ‘simplicity’, ‘routine/organisation’, ‘structured living’, ‘quietness’, ‘a healthy diet’, ‘exercise’, ‘concentration’ and ‘tracking progress and achievements’. Notable here is that these categories do not differ from those that might benefit anyone let alone people with ABI. Participants also spoke about the effort required to teach themselves to make their body work again.
Try not to get impatient with myself
Never be afraid to ask for help or get something wrong
The more ‘mistakes’ I made the more I learnt and recovered. Getting as much help from as many people as possible always puts you in the best position possible
Whatever I’m doing gets all my attention
Writing…recording my thoughts, feelings and daily events
Tracking my progress and achievements
Facing the fact I need to rely on my palm pilot diary
Everything is ‘slowly slowly’ and time has changed
‘I try to be the best I can at everything that I was good at before my ABI.’
‘My short term memory is getting better… I have always practised my memory with mind games and developed strategies’
‘Repetition with a new task or learning something different — repetition is the only way to cement it until it becomes part of the fabric of your life’.
The reader should be aware that implicit in these narratives is that participants had already remembered and understood concepts and had then gone on to apply, analyse and evaluate their actions. They were in effect reflecting – circumambulating through both self-reflection and then testing in order to create new ideas to move their lives forward. These implicit concepts so clearly demonstrated above align with Anderson and Krathwohl’s (2001) learning taxonomy presented in Chap 5.