How Dory can help us understand amnesia
It may make for an amusing film, but what is life really like for those without memories, asks Rupert Hawksley
Adrian Ellis is 51 but thinks he is 39. After an accident in 2004, when he fell from a gantry at work and knocked his head, he developed anterograde amnesia, a devastating condition that prevents him retaining new memories. He is stuck permanently in the present tense.
Unlike sufferers of retrograde amnesia, who forget everything prior to the onset of the disease, Ellis has crystal-clear memories of his life up to the day of his accident; then he “went all the way back to zero”. So while he remembers his four children, aged 24 to 31, he regularly has to be reminded that he has a grandchild.
He talks fondly about the Arsenal team, the Invincibles, that won the Premier League in 2004, but will forget our conversation the moment he puts the phone down. “There’s no sense of boredom with this condition,” he laughs.
Undoubtedly, there is something amusing about the notion of anterograde amnesia. Finding Dory, Pixar’s delightful sequel to Finding
Nemo, released last week, sees a fish born with the condition going in search of her long-lost parents. But the reality of life without short-term memory is far from funny.
“The true impact of brain injury and the effects it can have on individuals and families alike would not [in reality] provide much in the way of light-hearted material,” says Luke Griggs, spokesperson for the brain injury charity Headway.
For three years following his fall, Ellis’s anterograde amnesia went undiagnosed. His personality gradually changed – he became aggressive, frustrated that his mind was no longer functioning as it once did. “You couldn’t reason with him,” says his mother Dylis, 73, who now cares full-time for her son. Eventually, his marriage broke down, and Adrian now lives alone, a short walk from his parents’ house in Swindon, where he grew up.
When the musician Clive Wearing developed anterograde and retrograde amnesia in his mid-forties, after suffering from a brain infection, he began to keep a journal in an attempt to make sense of his diminished memory span. It makes for desperate reading: “2:10pm: this time properly awake… 2:14pm: this time finally awake… 2:35pm: this time completely awake.”
Dylis knows such scenarios only too well. “Adrian reads the paper over and over again but is he aware that he’s done it before?” Her voice trails off. “I don’t know.”
But like the fish in Finding Dory, who uses carefully placed pebbles to navigate the oceans, Ellis has developed methods to help him cope.
Every inch of his newspaper is covered in notes, to remind him what needs to be done (and has already been done) that day. “It’s about coming to terms with what you’ve got,” he says, “and learning to live with it.”
Part of the problem is that anterograde amnesia is so rare that opportunities to study it are limited. The most famous case is that of Henry Gustav Molaison, who underwent an experimental operation by American neurosurgeon William Beecher Scoville in 1953, in order to cure his epilepsy.
Drilling into both sides of Molaison’s brain, Scoville removed the amygdala from the medial temporal lobe, the area of the brain which controls sensory input. The procedure helped to combat his epilepsy, but left him in a permanent state of amnesia. After his death in 2008, Molaison’s brain was donated to medical research, and has been crucial to furthering our understanding of how memories are formed.
There is hope for amnesia sufferers. Wearing, now 78, has surprised doctors with his ability to learn new music. As Oliver Sacks wrote in his
New Yorker profile of the pianist: “One has only to see him at the keyboard or with [his wife] Deborah to feel that, at such times, he is himself again and wholly alive.”
One gets the same impression speaking to Ellis. He sees his children regularly, works at a community garden, and never, ever stops laughing. “You’ve got to keep your sense of humour,” he says. We would all do well not to forget that.
‘There’s no boredom with this condition… you’ve got to keep a sense of humour’