Bette Ferguson has been alive for 92 years, and if you ask her about it, she’ll recount them in vivid detail. She was born on a World War I troopship as it sailed back to the United States, lived in every state in the country — including Alaska and Hawaii — and worked as a waitress, a computer technician and an extra in The Wizard of Oz movie.
And don’t get her started about her husbands.
She leans back in her easy chair in her tiny brown-carpeted room in a Mission Hills low-income retirement home, runs her hand through her spiky gray hair and cackles.
“Which one?” she says. Turns out, she’s had five.
Ferguson’s ability to remember the cities she’s lived in, jobs she’s worked and, yes, all the men she’s married, makes her very valuable to Jacopo Annese, a neuroanatomist at the University of California, San Diego. Annese is director of The Brain Observatory, a research center at UCSD where brains are sliced up, laid out on slides and then scanned into digital images, which researchers can use to visualize what a variety of brains look like. Scientists can use Annese’s images to see how diseases like Alzheimer’s physically change the brain.
Annese became well-known for his work with Henry Molaison, a famous amnesiac whose brain images will be studied by scientists across the world for insights into memory impairment.
Now, Annese is looking to expand his library. He wants to collect, slice and digitize 1,000 brains from a variety of donors to illustrate how diseases like Alzheimer’s, tremors and cancer impact the brain’s makeup. He’s also interested in people like Ferguson, who called Annese and offered her brain after reading about him in the newspaper. Because Ferguson can remember just about everything that has happened in her life, Annese wants to see what an aged but disease-free brain looks like.
The idea of cataloguing brains might conjure up images from bad horror movies, but that’s not really what’s going on in Annese’s observatory. Yes, he has jars of brains sitting in the back of his lab, and yes, a tour of his operation involves watching his lab assistants maneuver bits of gel-encased brains between test tubes.
But Annese is also going much farther than just collecting and archiving. He doesn’t just want the brains of his donors — he wants to know the donors’ identities, too. He wants to know everything about the people who carry the brains: where they’ve lived, where they’ve worked, what they like to do with their free time and what their favorite foods are.
After Ferguson called Annese and offered him her brain, he’s seen her regularly for exams, interviews and MRIs, but he also invites her to dinner and stops by her apartment to chat. Ferguson can’t drive and won’t take the bus, leading Annese’s assistant to joke that someone could make a movie about her job called “Driving Miss Bette.”
“If I just collect brains, but don’t know what the people did when they were alive, how am I going to make the correlation between the brain’s function and structure?” Annese said. “That’s why the more we know the better, because something may be relevant.”
On the wall behind his desk hangs an incredibly detailed, extremely lifelike painting of a horse done by a future brain donor, who loves painting horses, and rarely paints anything else.
For Annese, this man’s proclivity toward horses, the colors he chooses to paint with, the way he holds his brush all paint a fuller picture of the individual encasing the to-be-donated brain.
“It’s not just male, 50-something years old, normal,” he said. “If we didn’t know how the person used his brain, we cannot make these connections.”
This means the ideal participants for the project are people who are still living, so he can study them in life before going through their brain’s structure after death. He and his assistants interview future donors for hours, have them fill out lengthy questionnaires and collect MRI scans of their brains to soak up all the information they can.
Like a true collector, or, as he calls himself, a curator, Annese is looking for a range of pieces. In addition to his famous amnesiac and Ferguson, he is working with a group of mothers and sisters, some of whom are scent-blind; a 56-year-old woman who died of early-onset Alzheimer’s and her sister; a few patients with the movement disorder, essential tremor; and the owner and head chef of the downtown Italian restaurant Operacaffe.
“Nobody’s ordinary once you start recording their story,” Annese said. “You cannot say there is a difference between a famous patient and ordinary people, because what is ordinary becomes relative.”
Annese readily admits that his work could seem a little far-fetched — “exploratory is a fancy word for fishing,” he said — but he also has faith that his work is important. And other neurologists back him up on this belief.
By combining these brain images with data about a person’s psychology or thought process, The Brain Observatory “will provide a high resolution map of normal brain structure,” said Dr. James Burke, the director of the Memory Disorders Clinic at Duke University. That map can help show researchers how disease creates physical changes in the brain.
In addition to these scientific contributions, Annese called his work capturing individuals’ brains a future business model for The Brain Observatory: he could digitally record a person’s brain for a price as a way to bring that person some sort of immortality. The lab’s yearly budget is about $500,000, but building his 1,000-brain library will require lots of private donations — it costs about $10,000 to digitize a single brain. It’ll require lots more brains, too. Right now, he has about 20 brains, and is working with seven more future donors.
Annese’s emphasis on individuals in addition to their brains suggests a belief that at least in some way, the brain represents the person it inhabits.
“We know that when a memory is stored, there is a physical change in brain,” he said. “We call this the theory of engram, the theory that there are patterns, fingerprints in the brain of function.”
He also needs donors willing to leave their brains in someone else’s hands. Ferguson said she doesn’t care what happens to her brain after she dies, or as she calls it, “graduates.”
“After I graduate, I’ll have absolutely no use for my brain,” she said. “If they can take it, slice it up, well, more power to them.”
Ferguson and many of the other future brain donors — the scent-blind mothers and daughters, the woman with early-onset Alzheimer’s and her sister — believe in souls and an afterlife, but all said they won’t physically need their brains when they get there. Annese agrees with this separation, but at the same time, he also sees the brain as at least somewhat of a representation of the individual. It’s not a soul, but it does carry the fingerprints of the person it used to inhabit.
“I am striving to connect the brain and a person’s way of being, but instead donors say, ‘No, the two things are separate,’” he said. “But they were not separate when they were alive. They separate after death, but not in life.
“We need to go through the brain to see what it expresses about their life, but the only way to do that is if it’s separate from them after their death.”
Correction: Ferguson’s home is in Mission Hills, not downtown. We regret the error.
Please contact Claire Trageser directly at claire.trageser@gmail.com and follow her on Twitter: twitter.com/clairetrageser.