Firsthand Experience Fuels The 'Pursuit Of Memory'Neuroscientist Joseph Jebelli's new book about the fight against Alzheimer's draws on his own personal passions; his grandfather developed the disease and eventually stopped recognizing his grandson.
At one point in Joseph Jebelli's new book In Pursuit of Memory: The Fight Against Alzheimer's, the author interviews Carol Jennings, an elderly woman who lives in Coventry, England. Diagnosed with Alzheimer's, she furrows her brow as she attempts to describe what the onset of the disease felt like — an attempt hampered, of course, by the disease itself. "For a while things were going ... a bit pear-shaped ... there was some sort of thing, I'm sure, that was ... a little bit ... strange," she says, grasping for the memories as well as the words. Meanwhile, her husband, Stuart, does his best to keep her upbeat and able to make the most of their remaining life together. It's one of the most haunting and poignant moments of the book, an overview of Alzheimer's that never once sacrifices the human story for the scientific one.
Jebelli, a British neuroscientist, is at the forefront of the fight against Alzheimer's, and he brings that authority to bear on the book. But he also brings his personal passion. His grandfather, an Iranian immigrant to England named Abbas, began showing symptoms of Alzheimer's when Jebelli was 12. Abbas started to abruptly and aimlessly get up, leave the house, and wander about town. His ever-present smile faded to a perpetual expression of loss. Eventually he stopped recognizing his beloved grandson.
Jebelli's firsthand experience and crusading zeal fuel In Pursuit of Memory. Laying out a timeline of the disease — which begins with the early-20th-century German psychiatrist Alois Alzheimer, whose name was destined to live on in infamy — Jebelli lucidly explains the plaques and tangles that develop in the brains of Alzheimer's victims, causing a cascading decimation of neurons and ultimately resulting in "a brain the weight of an orange."
"Scientists talk about Alzheimer's like detectives solving a crime — evidence versus speculation, deduction versus assumption, truth versus deception," Jebelli writes, and accordingly, he structures In Pursuit of Memory as a kind of detective story. Crisscrossing the globe, he tracks down researchers and patients alike, assembling their stories into a portrait of loss as well as a race against time to find new treatments. He has a way with words: He calls the brain "the 85 billion cells that knit fragments of the past into a ghostly tapestry we call memory," avoiding clinical jargon for a more lyrical voice. That choice makes the book's vast and complicated concepts easily graspable — like the fact that isolating a genetic mutation in a DNA molecule is like finding a single typo in a 200,000-page book. The molecular geneticist Alison Goate accomplished exactly this superhuman feat in 1991, and it became one of the major breakthroughs in Alzheimer's research — a tale that Jebelli renders with suspense.
Carol Jennings was not alone in her diagnosis. Most of her immediate family, starting with her father, had contracted Alzheimer's, and before she developed it herself, she became an activist and willing research subject, hoping her efforts might hasten a cure. That cure has yet to come. But, as Jebelli compellingly lays out, there is promise. Geneticists, biologists, and others studying neurodegeneration — the author included — are making constant inroads.
For instance, a group of Alzheimer's patients in Colombia, where the disease is known as La Bobera, or the foolishness, have been part of a clinical trial for a new antibody that may unlock some the pathology's secrets. Jebelli doesn't report on this from afar; he travels to Colombia, meets these patients firsthand, and even works in some literary analogies via Gabriel García Márquez's One Hundred Years of Solitude, in which the fictional Latin American town of Macondo experiences its own magical kind of collective memory loss. "We are closer than ever to the abolition of Alzheimer's," Jebelli sums up, and his hope comes across not as hollowly optimistic, but as hard-won.
The book is a labor of knowledge, but it's also a labor of love. Remembering his grandfather, Jebelli writes that watching Abbas' decline "was like watching someone endlessly fall back through time." It's just one of many passages that vividly illustrate the toll Alzheimer's takes on people, both the victims and the caregivers, as well as the heart-wrenching and thought-provoking new perspective on identity that it tragically imparts.
Are we simply a collection of our memories? Or is there something more fundamental to our beings? Jebelli frames these questions with chilling clarity but doesn't dare to claim he's answered them. Sensitive, humanizing, and poetic, In Pursuit of Memory provides a masterful overview of the disease, while delicately probing the existential ramifications of Alzheimer's — which Jebelli calls "the absence of a reflection altogether — a shadowy abyss that disengages a person from the world."
Jason Heller is a Hugo Award-winning editor and author of the forthcoming book Strange Stars (Melville House). Twitter: @jason_m_heller