Websites reviewed in 2009
The first six Websites were chosen for a more detailed review that involved assessment of whether the information was suitable for a person with physical, cognitive and emotional difficulties associated with ABI. The review looked for potential difficulties a person with ABI might experience and included identification of the intended audience (the person with ABI and/or a family members) and the relevance of the information included the writing style and language used (formal medical language, or everyday language including jargon), print size, the manual dexterity required to negotiate round the site and presence of any distracting amount of information on the Web page (if there were distracting flashing advertisements to join the organisation or make a donation).
The scope of information on the Websites was also examined. Issues covered by the six Websites were information about the brain, causes of brain injury, minor brain injury, rehabilitation, the law/guardianship, balance, sensory problems, headaches, hearing, speech and swallowing, sexual problems, poor concentration, poor problem-solving, lack of initiative, inflexibility, impulsivity, visual disorders, memory and anger, socially inappropriate behaviour and emotional irritation. Detailed strategies to cope with these difficulties were not available in all Websites. Panic attacks, post-traumatic stress and pain were not covered in any of the Websites; information about depression, epilepsy, self-centredness and hospital was only to be found in three of the Websites.
The Websites were also evaluated to ascertain whether educational learning theories were used in their construction and delivery. They were not. Websites were ‘seeker’ models of information. They contained ‘factual’ information, and educational learning theories (discussed in Chap. 5) did not appear to be employed.
Three years following the above search of Websites in 2009, a further review of the World Wide Web elicited from Google (the most obvious search engine a layperson or person with ABI would use) using the search terms ‘Information about brain injury’, for the first 20 Websites listed. These were prepared by health services, brain injury support organisations, doctors, lawyers, rehabilitation hospitals and national institutes, and observations about their content are shown in Fig. 1.2.
Observations of 20 Websites reviewed in 2012
This review revealed that it can be still be tricky for a person with memory, sight and other difficulties to access and use Web-based information and to revisit the site and highlight main areas for future reference as might be possible in a book where pages can be marked with paper or post-it labels and main information highlighted in text.
Over the past three years on numerous occasions, Durham has embarked on a search for helpful material about ABI. Each search has produced nausea (due to double vision—moving images, memory difficulties) and frustrations at the complexity of searching through this material. Seeking meaningful information can be messy, complicated and difficult and leave the seeker with ABI frustrated and overwhelmed; it can be assumed that many other people with ABI would have similar experiences.
In order to learn, people with ABI require information when they are ready to hear and understand it. Relevant information must be presented in a form they can understand, at a time when they are ready to absorb and act upon it. The way the person with ABI is motivated to engage with learning can be affected by a plethora of problems—memory, cognition, processing information, applying knowledge, making choices and making informed decisions.
In spite of numerous searches for helpful material on the Internet, Johnson’s (2010) online book Traumatic Brain Injury Survival Guide stands out as a recent narrative of hope. Johnson states that he wrote the online book because
Nearly all of the survivors of traumatic head injury and their families with whom I have worked have had one complaint: There is nothing written that explains head injury in clear, easy to understand language. Most say the available material is too medical or too difficult to read. (Johnson, 2010, p. 1)
The format of this Website was easy to follow; the user simply clicked ‘next’ at the bottom of each page, and the information was presented in clear everyday language, in large print, with obvious headings and had no distracting other material on the page. It contained explanations, examples and advice presented in a friendly, positive and empathetic tone.
Web information indicated that participants in the study might be challenged by a number of issues. The World Wide Web search revealed that Web pages generally isolate problems and classify them accordingly as physical, cognitive, behavioural and emotional, with smaller areas on social consequences and improvement, even though the effects of these problems overlap and influence each other (see Fig. 1.3). Note these Websites have been updated as described later, so the references are historical and no longer active.
Web-based information revealed problems that people with ABI experience; i.e., participants in this study might have these problems
Headwork 1: The data collection must address these issues about ABI
As will be seen in Chap. 3, much of this information is translated from body-object and medicalised views of ABI. The overview above provided a background to the problems study participants might be experiencing, but failed to identify how the person might progress to learn to fare better, and the negative issues described could seem overly pessimistic to people with ABI.
An additional search for relevant literature resources was conducted on the basis of what other areas a person with ABI, recently out of hospital, would seek out. An established library, which houses valuable resources covering ABI, was approached, but this specialist library did not appear to be widely used by people with ABI or their families.
A more recent trend on some brain injury support sites includes first-person narratives, stories of hope and courage, which talk about the trauma of ABI, but also provide a positive perspective on living with ABI as a ‘whole’ human being. These are explored below.
1.5 How Narratives Provide Another Way to View ABI
There is a broad array of books and blogs that use narrative (see Chap. 4) to provide valuable insight into the lifeworld of people with ABI. These narratives explain what it’s like to have ABI and contrast with the medical ‘facts’ about ABI. Narratives facilitate understanding of the emotional and psychological needs of people with ABI by highlighting the way people endure and cope with ABI. Narratives provide information and personal insight for people with ABI and their families. In searching for books and blogs about ABI, search terms used included brain injury autobiographies, personal narratives, memoirs, brain injury books, brain injury blogs, recovering after brain injury and brain injury—children’s books.
Because the information is in story form, narrative may not be as confronting as reading aggregated information. Additionally, these narratives illuminate ‘blind spots’ (Wagner, 1993) that are not the focus of medical studies. Reading narrative accounts of other peoples’ ABI experiences can allow the person to reflect and make connections to their own experiences.
There are now many books that can help people understand and deal with ABI, including self-help books. The books and narratives in the following review include those written by people with ABI, books co-authored by people with ABI and their family carers, and books written by family carers, professional writers and rehabilitation professionals. Some of these books are published by mainstream publishers and others by self-publishing organisations.
1.5.1 Books Written by People with ABI: Narratives from the ‘Emic’ (Merleau-Ponty, 1962) ‘Insider’s’ Perspective
Personal narratives are important in all societies (Linde, 1993; Peterson & McCabe, 1992; Widdershoven, 1993). People with ABI portray themselves as fully rounded complex human beings, with distinct personal histories, a wealth of experiences to talk about and similarities and differences to other people in their books. The following section includes examples of narratives to put the experience of brain injury in terms of individual experience and to contrast with the ‘medical model’ approach of isolating deficits.
Many books written by people with ABI echo the belief that telling their story is important. Garrison (2007) wrote about how she woke up in hospital after a substantial stroke and thought that she had survived for a reason or a purpose. Recording the experience of ABI is a powerful step in healing. Bruner (1990) contends that people make sense of their experience as they impart it to others.
Books written by people with ABI contain an explanation that ‘I am not who you see’ and ‘I am really a combination of who “I was” and who “I am”’; they tell the story of how this calamity happened—black ice, fall, car accident, stroke—the story is important (if this happened to me, it could happen to you too). They are written in a readable conversational style using easy-to-read words, and they speak with authority and genuine understanding and knowledge. They express the struggle, the complexities and the difficulties of ABI; they reiterate again and again that understanding and knowledge is power to the brain-damaged person. They seek to motivate people with ABI and their families to never give up, they comfort and guide by passing on their discoveries, and they bring hope.
Like mountain climbers, or solo sailors who have circumnavigated the globe, many authors are now motivational speakers. They have had an epiphany, an insight to life. They are examples of Niezsche’s statement:
If we manage to achieve some measure of understanding of the kind of world in which our human reality has emerged… but if we cannot do much more than comprehend ourselves and things human, this will at least be something — and something quite significant and well worth achieving at that, (cited in Honderich 1995, p. 623).
Explaining the lived experience of ABI is the focus of the narratives that deal with many issues about ABI that Durham wrote about in ‘Doing Up Buttons’. They focus on the day-to-day frustrations of living with brain injury. For example, Osborn’s (1997) narrative leads the reader to contrast her pre-brain injury life as a medical doctor, to her post brain injury life where she has difficulty showering and dressing. Nine years post-injury, Osborne (1997) believes that she is still improving due to learnt strategies. Not only does she tell about what it is like to have ABI, she gives hope as we read of her progress from confusion, grief, loss, dysfunction and alienation to a happy life.
Some narratives focus on the loss of identity. Becker (2004), author of a New York Times bestseller, grapples with the question of identity as she provides insight into creativity, identity, love, relationships and the elusive something that makes us, us. These could be classed as ‘blind spots’ of medical research.
A thread that runs through some stories is the importance of acceptance. Skloot, an author of seventeen books, a novelist, poet and essayist wrote his book to tell how he came to accept his injury.
I used to be able to think. My brain circuits were all connected…I had a memory and an intuition I could trust…. now [14 years later] I can say that I’ve become adept at being brain damaged. It is not that my symptoms have gone away: I still try to dice a stalk of celery with a carrot instead of a knife…Along the way, though, I’ve learned to manage my encounters with the world. (Skloot, 2004, p. 196)
Some books focus on how the person is treated by other people. Calderwood’s (2003) book tells of her struggle to discover her identity and come to terms with her disability and her sense of loss, grief and rage as she’d been labelled a ‘hypochondriac, a liar and a junkie’(p. 32) and was bullied in the nine months it took to be diagnosed. Calderwood points out ‘blind spots’ of how undiagnosed people can be treated very poorly by medical professionals and the public. Mason’s (2009) book narrates her struggle to independent living from a vegetative state after being hit by a drunk driver while cycling. This is another ‘blind spot’—how people with ABI can struggle to live independently.
Another issue written about by people with ABI is their rehabilitation experience. Strand (2004) wrote how the controlled and structured environment of rehabilitation reminded him of elementary school. Because he was not informed of the reason for doing certain tasks, he believed he was expected to agree to complete the task and he resumed the outlook and behaviour he’d had when he was at school. He did not realise he was completing tasks to benefit himself. Rather, he thought it was his duty to please the rehabilitation professional, which resulted in learning very little. He realises that if he’d understood the reason for completing tasks, he would have been more engaged in his learning experience.
Strand used metaphors to reflect on the importance of being engaged in the learning process. He uses the analogy of feeling as if he is trapped under ice of a frozen lake, that no one can see or hear him, he can not get a message through to the outsiders: it is ‘cold, dark and lonely’. He chronicles his achievements so that others can use his experiences to ‘forge their own tools to chip through the ice’.
Meili’s (2003) book, written fourteen years after she was assaulted and raped as she jogged in Central Park, New York, identifies many of the reasons why people with ABI write books: she was looking for a way to turn what was truly horrible into something positive; the attack, meant to take her life, gave her a deeper life, one richer and more meaningful than it might have been (Meili, p. 7). She writes about the capacity of the human body and the human spirit to heal and the power of touch, of the mind. She believes that the heart is as important as medicine in healing, and even though she still suffers from her injuries, her experience has let her find her own humanity, kindness and love.
Other first-person narratives take slightly different lines. For example, in his book Winslade (1998), a professor of philosophy and medicine argues for increasing the amount of rehabilitation available for people with brain injury. Kelley (2010) queries whether he will ever heal from the terrible injury and whether his family will ever enjoy quality of life. Mason (2009), Fairclough (2002), Long (2005) and Carey’s (2006) books tell of the importance of love, faith, acceptance, gratitude, humility, compassion, hope and beauty.
The most immediate, but easily missed, point is that these writers have achieved a great deal simply through the process of writing a book that is published. Their work is an accomplishment in itself and points to a significant degree of resilience and a commitment and motivation to connect with other people with ABI and society at large, often under very difficult conditions. It indicates that the person has also re-engaged with life, and significantly, many talk about their struggle to re-learn both who they are (the new me) and the simple practical tasks required to be a writer. This theme of re-learning is vitally important as will be seen.
Moreover, in comparison with the formal information content of many Websites, the stories convey hope, determination and a positive view that life can be good, despite their changed identity and circumstances.
1.5.2 Dr. Mark Sherry’s Book
Perhaps the most significant book encompassing both an academic view and a true insider’s perspective of ABI is Sherry’s doctoral thesis, published as a book If Only I Had a Brain: Deconstructing Brain Injury (2006). Sherry’s research is ‘insider research’, which is well established in anthropological, feminist and disability research (Barnes, 1990; Morris, 1991). He used a cross-disciplinary theoretical approach that includes social and medical models of disability, lessons from feminism, queer theory, and post-colonial and postmodern literature in his thesis, which examines ABI in terms of impairment, identity and embodiment, and his research draws on his own circumstances as well as that of others.
Sherry states that ‘many disabled people find traditional research methods oppressive’ (Sherry, 2006, p. 15) and concludes that ‘there is a need for important, practical revisions in the way we understand and respond to the experience of brain injury’ (p. 212). He writes of domestic violence and brain injury, young people in nursing homes and the charity approach of the service delivery system, which came under a great deal of criticism from his participants (p. 212). He also writes about the alarming misdiagnosis of the ‘vegetative state’ and that inability to assess any culturally appropriate information or services is particularly alarming. He states that ‘What has kept me going is knowing that there are many brain injury survivors and allies who are prepared to fight for an alternative vision, where we have rights, choices and respect’(p. 212).
This brief overview has provided the insiders’ views of issues considered of importance to people with ABI, and these issues informed the study. The following section briefly identifies books written by the person with ABI in conjunction with their family members to detect topics they consider important.
1.5.3 Books Written by People with ABI with Their Family Members
Narrative themes from books written by people with ABI are related to themes written by family members. They have been included here to allow the reader to observe issues considered to be important by people with ABI and their family. Bob and Lee Woodruff’s (2008) book tells of Bob Woodruff’s experience since he was injured by a roadside bomb while an anchor of ABC News in Iraq. Bob and Lee Woodruff have established the Bob Woodruff Foundation to raise money to provide resources to the estimated 320,000 service members who have sustained TBI and estimated 300,000 service members who have probable psychological wounds.