Putting the Brain Back in the Person
May 6, 2014 by louis
This guest blog post is from Ben Graham, Director of Development at Headway East London, a charity that supports survivors of brain injury. Headway members collaborated with food designers Blanch & Shock to develop the menu for Guerilla Science’s Brain Banquet in March 2014. Ben also supported two of Headway’s members to talk at the events about their experiences.
Preparing for a talk in a dank World War II bunker with an audience of buzzy weekend revelers was new territory for us. The other speakers were funny and irreverent and spooky – talking about hallucinations and brain scanning and outer reaches of neuroscience. The diners laughed and gasped in the right places and, when the main course (calves brains) was presented, they squealed and made sicky noises and prodded at their food. How were we, a pair of charity workers, one of whom was actually living with a brain injury, to strike the right tone? Our presentation needed to be entertaining – a sob story wouldn’t work. But it also had to be true, and the truth isn’t pretty.
The experiences of people who have survived brain injuries are a mainstay of brain research. Popular neuroscience has become a kind of unhappy hall of fame – populated by famous cases like Phineas Gage, a Victorian railroad labourer who, fantastically enough, survived an iron rod being blasted through his skull and whose apparent change in habits is still used as evidence for theories about the role of the frontal lobes in personality.
Another paradigm example from the library of misfortune is that of H.M., a factory worker whose ability to form new memories was severely impaired after a brain surgeon removed parts of his temporal lobes in the 1950s in an attempt at curing his disabling epilepsy.
About H.M. (or Henry Molaison as we now know him) we know almost too much – he eventually became a full time resident at the research unit that was studying him. After his death in 2008, his brain, that most prized possession, became the property of the Brain Observatory at the University of San Diego and is now available to view in unprecedented detail in an online Brain Atlas – a Google Map of Molaison’s brain, zoomable to the scale of the individual cell.
What we don’t know is how these people felt about their lives – what it was like from their own perspectives. In the case of Gage this is understandable. He died of a seizure in 1860, at the age of 36, having lived only eleven years past his accident, and was not closely tracked in the intervening years.
But what about Molaison? For a man so thoroughly studied, it seems odd that there aren’t more of his own words on record. By all accounts he was reserved, taciturn; maybe he didn’t want to talk about it. And perhaps in his case such a record would have been difficult to obtain – naturally, it can be difficult for someone with a profound memory impairment to reflect on their experiences. But it’s not impossible. With the right support, maybe he would have told his story. But did anybody ask?
Brain injury is often called a hidden disability – because its symptoms can be hard to see from outside and because those that live with it are too often marginalized. For many survivors, the fact of survival is a mixed blessing. On the Friday evening at the Bunker, Dean who came to talk with me, summed it up: “Now that it’s happened,” he said, “I’ll suffer it. I am a different person since my injury. In some ways I’m better than I was and I wouldn’t change it. But if anything like that ever happens again, switch the machine off.” As I said, the truth isn’t pretty. Luckily, he also told some jokes.
My nerves about the event proved unfounded – I hadn’t counted on the natural charm of the people I was working with, or the keen interest of the audience. Both Dean and Josh, the other volunteer who came, are great public speakers and the people who had come to eat and learn were more than ready to hear a difficult story and see how it made sense of the neuroscience that came before it.
When we agreed to help at the Brain Banquet, this is what we were hoping to do: put the brain back inside the person. We wanted to help explain the wider implications of neuroscience and brain medicine and to show that brain injury isn’t just a curiosity but represents profound life changes for the survivor and a host of challenging ethical questions for the whole of society. Thanks to Guerilla Science and their talented collaborators, we were able to bring this message to a new, wider audience.