It took 14 men to restrain JosĂŠ Arcadio BuendĂa at the height of his delirium, and 20 more to drag and tie him to a chestnut tree. The patriarch of Gabriel GarcĂa MĂĄrquezâs One Hundred Years of Solitude would remain tethered there until his death, âdiscolored by sun and rainâ as he sank into an âabyss of unawareness.â
Decades after the publication of the classic Colombian novel, Francisco Piedrahita came across similar scenes while growing up in the countryâs mountainous Antioquia region. Walking through his native hamlet of Canoas, he glimpsed neighbors who seemed disoriented or couldnât leave their beds. Once, he saw a man tied to furniture with a rope around his waist. âItâs an illness that people get,â Piedrahitaâs mother explained, âand youâll come to understand it one day.â
She was right. Piedrahita watched his grandmother die of it. Other grandparents, aunts, and uncles followed. Piedrahita eventually became a neurology nurse, caring for families, including his own, who were marked by a rare genetic mutation linked to early-onset Alzheimerâs disease.
His storyâpart clinical, part familialâforms the core of Valley of Forgetting, Jennie Erin Smithâs book on memory, medicine, and hereditary fate in rural Colombia. She follows researchers who, over four decades, have studied the paisa mutationâa gene passed down from a single common ancestorâwhich causes the illness in nearly everyone who inherits it. In Antioquia, scientists have identified between 1,000 and 1,800 carriers of this particular gene, constituting one of the largest known clusters of familial cases on Earth. Smith, a science journalist, also tells the stories of some members of the 6,000-person clan who participate in research trials, donate loved onesâ brains, and care for one another while bracing for their turn.
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Dementia is one of the modern worldâs most dreaded maladiesâonly in part because we see it more as people live longer. In an era when individual identity and self-expression are often held paramount, the condition threatens to erase the self entirely. Smithâs book is a detailed chronicle of the families and scientists who are drawn together by one mutation, but it isnât just a grim catalogue of familial illness. Through the characters she speaks with over six years, Smith suggests that forgetting might be more than just an existential loss; it might also be a chance to explore other forms of humanity that are grounded in feeling, presence, or touch.
GarcĂa MĂĄrquezâs 1967 novel follows seven generations of the BuendĂa family in the fictional Colombian town of Macondo, a place haunted by war and magic. Early in the story, a mysterious plague descends on the town, causing insomnia and erasing memories. GarcĂa MĂĄrquezâs fictional world hovers over Valley of Forgetting, resonating uncannily with Antioquiaâs real experience of widespread, precipitous memory loss. A copy of the novel accompanies one woman whom Smith gets to know on a 10-hour bus ride. When clinical trials of an Alzheimerâs treatment called crenezumab launched in Antioquia in 2013, scientists compared it to the magical elixir that ends the amnesiac plague in Macondo. (The crenezumab study was halted in 2022 after disappointing results.)
One Hundred Years of Solitude is a famous work of magical realism. Its timelines collapse and blur, and its characters are bound by ruinous, inescapable fates; the reader cannot avoid disorientation. (GarcĂa MĂĄrquez, who died in 2014 with dementia, once described memory as the material and method of his lifeâs work: âAt bottom, I have written only one book, the same one that circles round and round, and continues on.â)
In Antioquia, many of those connected by the paisa mutation live with a similar sense of distortion. Here, Alzheimerâs is a disease not only of the elderly, but one that can strike adults as early as their 30s. Relatives care for family members while anticipating the day they might need the same help from their younger kin. âEach death caused them to relive the trauma of a previous death, and raised the specter of future ones,â Smith writes. Diagnosis is not an individual experience, but a collective tether. âLooking at the genealogies of these Alzheimerâs clans, the stories ceased to be personal. That level of resolution was lost. The family was the unit,â Smith writes, âits branches growing and shrinking endlessly like fractals.â
Both GarcĂa MĂĄrquezâs and Smithâs stories invite readers to reconsider memory as something relational, inherited, and timeless, rather than strictly personal and chronological. In Antioquia, Smith notes, families carrying the paisa mutation offer scientists a rare opportunity: a known genetic cause of early-onset Alzheimerâs for which they might develop targeted treatments. But thatâs not all. The people Smith observed âharbored other types of knowledgeâ about the disease, she writes, âwhich they carried, with no formal way to catalogue or transmit it, along with their coveted genes and biomarkers.â
This understanding isnât clinical, but embodiedâwhat people feel, witness, share, and pass down. When one researcher asked why so many in Antioquia were willing to give their blood, brains, and time to the trials, the answers came fast: âFor the kids,â they said. âTo break the chain.â Memory is not just what they recall. Itâs also how, over generations, people learn to care for one another.
Among ancient European philosophers, cognitive decline in late life was typically seen not as a medical condition but as either an inevitable consequence of aging or punishment for personal faults. (There are communities today where some see dementia more as a symptom of old age rather than a disease, as in Starr Country, Texas.) In some Asian and Middle Eastern traditions, dementia was historically associated with madness or idiocy. Among many First Nations communities, by contrast, memory loss in old age is sometimes embraced as a final flourish of the life cycle: a spiritual stage in which a person draws âcloser to the Creator.â
It wasnât until the turn of the 20th century that scientistsâarmed with microscopes and techniques that made brain tissue visible at the cellular levelâcould discern the structure of Alzheimerâs disease: tangled bundles and clumps of misfolded proteins inside and between neurons. But observing the disease under a microscope doesnât necessarily translate to a full understanding of it.
Antioquiaâs families had long viewed dementia not clinically but supernaturally. âThe conventional wisdom in Canoas held that it was witchcraft,â Smith writes, âwhich could mean a lot of things.â A curse from a scorned lover. A punishment cast by a cruel priest. An encounter with the arbolocoâthe âcrazy tree.â âIt wasnât such a stretch to think that someone in a disoriented, nonsensical state was enyerbado, or âunder a spell,â she writes; they might be bobo (âstupidâ) or necio (âhard-headedâ), âbut they did not call the person sick.â
Many popular metaphors for dementia suggest erosion: a candle burning down or the body as a shell of the former self it housed. Others conjure a sudden disappearance: fogs, voids, and black holes. Dementia is depicted as an invading enemy, waging war on the mind, a âholocaust of my brain,â as described by the author and activist Thomas DeBaggio in his 2002 memoir, Losing My Mind. These metaphors ultimately revealâbeyond a struggle to confront dementia outrightâa terror at the prospect of cognitive dissolution.
The brain is often seen as the engine and archive of a personâs identity. In this light, losing oneâs memory is tantamount to losing oneâs sense of self. âLife is not what one lived,â GarcĂa MĂĄrquez wrote in the epigraph of his 2002 memoir, âbut what one remembers and how one remembers it in order to recount it.â In other words: The survival of oneâs selfhood depends on a continued ability to narrate itâto orient yourself in time, space, and plot.
Dementia resists both emotional comprehension and rational explanation; it remains one of medicineâs most stubborn enigmas. Despite billions of dollars in investment and a century-plus of research, scientists donât yet fully understand what causes it or how to cure it, and it can be challenging to diagnose. Paradoxically, for those who are experiencing dementia, there is only grim certainty: They will die with it. This tension makes the illness ripe for figurative language. âAny important disease whose causality is murky, and for which treatment is ineffectual,â wrote Susan Sontag in her 1978 essay Illness as Metaphor, âtends to be awash in significance.â
In Valley of Forgetting, Smith describes a 25-year-old woman named Daniela who cares for her mother and extended family as early-onset Alzheimerâs moves through their generationâseven of her motherâs 10 siblings were already sick or had died from the disease at the time of Smithâs reporting.
Daniela showered her aunt Mabilia with affectionâkisses, ice pops, compliments on her appearance. When her uncle Fredy had only one word leftâsĂâDaniela recited familiar names for him, his face lighting up with each. As her mother, Doralba, declined, Daniela changed her diapers, rubbed her skin with lotion, and refused to cut her long hairââa concession,â Smith writes, âto a womanhood sheâd worn proudly and which no one wanted to rob her of.â
In Doralbaâs final hours, as her breath began to rattle, Daniela massaged her limbs. After her mother died, Daniela cleaned her one last time, smoothing lotion over her skin, as always. âBecause to me,â she told Smith, âat that moment, it was as though she was still alive.â She then gave her motherâs body to Neurociencias, the University of Antioquia research lab that had discovered the paisa mutation and has studied those with it for decades.
Read: Americans with dementia are grieving social media
The relationship between Daniela and Doralba extends beyond cognition. People with dementia may lose names, dates, recognition of their own face. But as the disease strips one kind of memory, it can deepen others: emotional, sensory. When my grandmother's dementia progressed, she once told me I was her little sister; it wasnât literally true, of course, but her affection was emotionally honest. As Smith notes in the final pages of her book, each generation of potential paisa mutation carriers has to face the future holding multiple, sometimes opposing, truths: âThis was what the families had learned over forty years of taking part in science: to resist undue hope and to resist despair.â
What if people considered a new metaphor for dementia? In neuroscience, the brain is sometimes described as a forestâneurons represent the trees; dendrites (from the ancient Greek for âtree,â dendron) represent the branches. Some writers, like Claude Couturier in her 1999 memoir, Puzzle, Journale dâune Alzheimer, have described living with dementia as being like a tree in autumn that âtries desperately to hold on to its dead leaves, ripped off by a violent wind.â
But fallen leaves donât have to be a symbol of death. Leaf litter hosts life for hundreds of species: bacteria, ants, mushrooms, shrews. Even bare trees are alive in unseen waysâcommunicating and sharing nutrients through underground networks of roots and fungi sometimes called âthe wood wide web.â
To consider dementia as a tree is to embrace a kind of magical realism: to understand that fresh buds of connection sprout even as older ones fall away, that roots persist, that decay and renewal coexist. As Ărsula, the matriarch of Garcia MĂĄrquezâs novel, witnessing her familyâs fate repeat itself, exclaims: âI know all of this by heart. Itâs as if time had turned around and we were back at the beginning.â
At one point, Daniela reminds Smith that her half-sister and cousin are already in their 30sâthe age when Alzheimerâs tends to appear in their family. She, herself, is also approaching 30. Yet Daniela sees not annihilation in her motherâs last days but something profoundly humanâbeyond memory as people typically understand it.
âShe didnât remember me anymore in her mind. Even as she tried to do it, she couldnât locate me. But she had me in her soul and in her heart because she could feel me,â Daniela concludes. âAlthough she couldnât say it, her eyes could.â
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