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A Compelling Synthesis of Literature and Science Makes for a Poignant Exploration of Familial Alzheimer Disease


doi: 10.1097/01.NT.0000335586.04149.93

Dr. Filley is professor of neurology and psychiatry at the University of Colorado School of Medicine.

A Compelling Synthesis of Literature and Science Makes for a Poignant Exploration of Familial Alzheimer Disease

The Story of Forgetting: A Novel | By Stefan Merrill Block | 320 Pages | Random House 2008

Literary and cinematic attention to Alzheimer disease has become popular as the disease continues to threaten our aging society, and most work so far has naturally dealt with the struggles of all too common late-onset cases. In books and films, such as John Bayley's Elegy for Iris and Sarah Polley's Away from Her, the challenges of coping with cognitive decline and its many troubling complications in older people take center stage.

But some younger people have Alzheimer disease, too, and whereas progressive dementia still dominates, unique issues in this group may emerge to add dramatic tension. Younger adults with the disease are usually in the most productive years of life, engaged in adult relationships, often raising children, and perhaps most vexingly, more likely to have a gene mutation that runs as a malignant familial curse. From this background unfolds Stefan Merrill Block's impressive debut novel, The Story of Forgetting.

Set in present day Texas, this intelligent, informed, and compassionate book contains three stories in one, two interlocking tales of individuals dealing with extraordinary situations wrought by the disease in their family, and a children's fantasy, common to both the involved families, deftly woven into the narrative.

One family is seen through the eyes of Abel Haggard, an aging, lonely man living out his days in a Dallas suburb with profound longing for a daughter he has not seen for decades. As a young man, he had lived with his healthy twin brother Paul, and with Mae, Paul's wife, for whom Abel harbored a long suppressed and, it turned out, mutual affection. After Paul was called to serve in the Korean War, Abel and Mae gave in to their insatiable passion, and despite much effort to avoid a child, she bore a daughter.

When Paul came home from the war, Abel and Mae, overcome by guilt, ceased their tryst and agreed to have the child raised as Paul's. By then, however, Paul, only in his 30s, was developing the mental dissolution that was soon recognized as early-onset Alzheimer disease. The timing of Mae's pregnancy was such that either Abel or Paul could have been the father, but by the time Paul got back to Texas, his dementia was so severe that he did not even wonder by whom Mae was impregnated.

Jamie, the daughter, learned as she grew up that, as Paul's daughter, she too was at risk for Paul's disease. When Abel eventually told her as a teenager that she, as his daughter, need not worry, she was so confused that she left for New York to start a new life, writing in her parting letter to Abel: “I need to live a life that I know is mine.”



The second family story is narrated by Seth Waller, a bright but awkward adolescent acutely aware of debilitating dementia advancing in his mother. He recounts bluntly that “As I grew up, my mom grew down.” Although she is found to have a gene mutation causing early-onset Alzheimer disease, he finds this information of little comfort and yearns to know more.

Scientifically gifted, Seth is the class geek in high school who reads neuropathology textbooks and tutors other students in biology, and of course knows that his mother's mutation puts him at 50 percent risk for the disease at some later time.

Seth's angst deepens as his father decides to have his wife placed in a nursing home, which Seth in his bitterness labels “The Waiting Room.” Trying to make sense of the grim disease lurking in his family's genome, he vows, in his youthful zeal, to undertake the arduous process of investigating his family history. He cleverly hacks in to the Texas university database with the names of people who have the mutation and may be able to help him establish the pedigree he craves to complete. Bravely knocking on doors of these people to learn more, Seth predictably encounters memory loss that hinders his investigative quest, but still he pushes on. His perseverance finally produces astonishing results, and the novel concludes with an intriguing and masterful interweaving of these two seemingly disparate family stories.

Befitting a book so focused on history and memory — both personal and familial — one clue to the intertwined stories comes from a certain Lord Alban Mapplethorpe, a late 18th -century nobleman in Iddylwahl, England. Seth discovers that Lord Mapplethorpe, a man with impaired memory in his mid-30s but still prodigious sexual powers, is likely to have been the source of the original gene mutation and its dissemination. The amorous duke reportedly had affairs with nearly 100 Georgian-era women, of whom 60 would go on to bear his offspring; in turn, 38 would carry the disease that eventually makes its way to Texas.

The other fictional strand of this finely crafted novel centers on a fantasy world known as Isidora. Interspersed between the dual family narratives, this graceful subplot evolves from the stories told to children in each family describing a mystical “…land without memory, where every need is met and every memory is forgotten.”

Isidora, the children are told, exists in many ancient lands and faraway places, but there is also a passageway to Texas, so even there all sorrows can be forgotten. In a valiant attempt to cope with the thievery of the mind in otherwise vital, healthy men and women, Isidora is created as a gentle anodyne to allay the children's fears — in a world where nothing can be remembered, no sadness can exist.

Block is a gifted writer with abundant literary talents, among which is a keen ironic sense. Abel is a reclusive, scoliotic hunchback who remains cognitively normal all his long life, whereas his twin brother Paul has devastating Alzheimer disease as a young adult although he is outgoing, charming, handsome, and physically robust.

Seth's father is stonily taciturn about his demented wife, who is confined to a nursing home while his grieving son longs for communication and emotional resolution. The father is obsessed with watching endless reruns on the History Channel while obstinately refusing to confront his own family's history of dementia.

The author has also done much to educate himself in the neurology of dementia, stimulated no doubt by his own grandmother being diagnosed with probable Alzheimer disease when he was a small child. The genetics of early-onset cases, and facts about the disease in general, are accurately presented through the voice of Seth, ever curious about what cognitive fate may await him. This information nicely contextualizes the stories, providing a solid while not numbing factual foundation for the events that transpire. The successful commingling of neurologic data and artful storytelling makes for a compelling synthesis of science and literature.

Yet this is indeed primarily a work of fiction, and a most absorbing one. The evolving intricacies of these families are captivating, and as their mysteries become gradually disentangled, the book becomes hard to put down. No light summer fare, this complex work makes demands on the reader's attention but is in the end highly rewarding. In an area of medicine beset by limited understanding and seemingly unmitigated personal tragedy, this novel is a poignant and sensitive account of Alzheimer disease that offers a fresh and curiously satisfying perspective. •

©2008 American Academy of Neurology