What’s it like to suffer a brain injury?

ROBERT was a student with a bright future as a musician, but that was before he fell from a mountain 14 years ago. Since his rock-climbing accident, he can't move around so well and few people can understand what he is saying.

His personality has also changed and he is impulsive and unable to control his temper. His attempts to break out of his isolation and relate sexually have provoked disgust, and been dismissed as “inappropriate behaviour” caused by his brain injury.

Health and social work professionals who care for the increasing number of brain injured people who survive accidents and illness . . . but are never the same again . . . are used to hearing stories such as Robert’s. But the difference is that Robert is fictional.

He is the hero of a novel by an American social worker called Tim Laskowski, who used his experience of working with severely brain injured people to write Every Good Boy Does Fine.

Laskowski is just one of the authors scheduled to address a national conference of health professionals working with brain injury . . . the leading cause of death and disability in people under 40 . . . in Edinburgh on December 3. As the event’s title, Insight into Injury, suggests, the theory is that workers can learn much from the articulacy of writers who have some experience of such trauma.

Other authors involved include Scottish author and poet Andrew Greig, Jocelyn Hurndall and screenwriter Tony Marchant. Greig’s books, Preferred Lies and In Another Light, were partly inspired by the “blue shadowlands” he experienced during his recovery from brain injury.

Hurndall, author of Defy the Stars, has written about her son Tom’s massive brain injuries (sustained while acting as a human shield in Gaza) and the decisions the family subsequently had to make to withdraw food and water from him to let him die. Marchant is the author of the TV drama Recovery.

Lance Corporal Johnson Beharry VC will be joined by Nick Cook, with whom he wrote Barefoot Soldier, at the conference to talk about his experiences. Despite serious head wounds, Beharry managed to drive his vehicle out of danger before losing consciousness.

Conference organiser Fen Parry, of Brain Injury Social Work, said: “We are keen to develop insight into the experience of the people we are working with and a better understanding of how the effects of their injuries impact upon all aspects of the lives of individuals with acquired brain injury.”

Around one million people attend hospital in Britain each year with a brain injury and about three in every 1000 people suffer a significant disability because of it. Men are about three times more likely to suffer than women but even people who thought their injury was mild or moderate can experience symptoms years after the initial trauma. And as medical science gets better at preventing deaths after accidents, the number of brain injured survivors continues to increase.

Laskowski admits that he found it difficult to relate to his own brain injured clients initially. He said: “I dismissed them as some kind of illiterate children. Then I heard two gentlemen read poems at a conference. They read and then their teacher read them over since they were unintelligible over a microphone in a big hall.

“When I heard the words, I was floored. The poems were filled with intelligence; they were profound, as well as emotional. I realised then that I had not spent enough time with these guys. I hadn’t really listened to them . . . because it takes patience to listen if their speech is garbled or they go off on tangents and have trouble staying focused.”

At the same time, Laskowski was studying for a post-graduate qualification in literature and creative writing. “I was in the midst of learning post-modern literary theories, which emphasised the arbitrariness of meaning and the subjective nature of interpretations of texts and the world at large.

“It occurred to me that many people with brain injuries were concerned with finding coherence, with being “normal’, or measuring up to some objective standards of thinking and living. Yet, the literary intellectuals who were not disabled stated that there is no “normal’, no objective meaning at all. The idea of meaninglessness seems to me to be a luxury that can be only entertained by someone who feels their life is well-ordered and meaningful. People who struggle cognitively are desperately seeking meaning and coherence.”

Thinking and writing about the fictional character Robert’s “search for meaning”, and writing poems in “his” voice, convinced the author that people with brain injuries are not so different from the rest of us. “They struggle every day for the routines that enable them to find the common bonds that allow communication and sharing and intimacy with those in their lives. But then, so do we all.”

Laskowski, who is travelling from Montana to address the conference, hopes that his work will help those who come into contact with the brain injured “to keep in mind the struggles a survivor endures . . . and maybe empathise, understand, tread a little more lightly and knowledgeably”.

Scots author Greig’s talk . . . The Blue Shadowlands and After . . . is about the importance of healing emotionally as well as simply physically. He said: “The health care I had was in many ways very good, once into the hi-tech system.

“Before that, I nearly died on a trolley in a corridor while they wondered who I was and what was wrong with me. My consultant surgeon undoubtedly saved my life. That said, personal relations were not his strong point.

“I spent several weeks in hospital, and the nursing care was good, patient, kind; kindness means a lot. But the emotional and psychological aspects of what was happening to me, and of my convalescence, were not addressed.

“I’m not angry about that, it’s just the case. I don’t expect consultant brain surgeons to relate to the emotional or existential consequences of not dying and of brain injury. Though it would help if someone did.”

Greig, who collapsed because of a blockage caused by a cyst, said he was interested in “how fiction and non-fiction can be not only about trauma and recovery, but can also be part of that recovery.”

He said he planned to talk about convalescence and the “one might say spiritual” experience of not dying. “I was left for a long time with a sense of being provisional, not quite real, as if I had in fact died and had just returned temporarily.

“Susan Sontag wrote of feeling posthumous. And everyone I looked at seemed to be in that state, too, not fully there. I worked on that and gradually emerged from it, over a couple of years; partly by playing golf and thus reconnecting with my own physical being and being on the planet, and also by writing about it.”

Hurndall’s story is in many ways the most tragic because her son Tom did not survive. As he lay in an Israeli hospital after being shot in the head, doctors predicted he would not last the night. In fact he lived for nine months.

At the end of her son’s life, the family decided to ask medical staff to withdraw food and water. “Rationally, I understood the need for legal clarity to protect those dying against all manner of forces, but, as it stood then, it seemed like a gross inhumanity . . . for Tom most of all and the family , , to have to witness the withdrawal of nutrition and water.”

In her moving and compassionate account of her son’s life and eventual death, Hurndall describes his decline in the Royal Free Hospital in west London . “Often he jerked his head, his hands clammy, his forehead damp with sweat. We were all certain he was in pain, that this could not go on . . . Anthony and I both felt as parents we had a serious responsibility to speak for Tom, to ask that he should not go on suffering.”

Hurndall makes a passionate plea in her book for the situation facing families such as hers to change, and will tell the conference that the legal framework governing such decisions should be revisited.

“It really made me question and doubt how far we human beings had progressed in our fight for civilisation and wonder at the manner in which we fail to take responsibility for a death, all reflected in our wholly inadequate legislation.”

The Herald
20th November 2007