DEMENTIA THROUGH THE EYES OF A POET
A WORLD OF LIGHT. BY FLOYD SKLOOT. 199 PAGES. UNIVERSITY OF NEBRASKA PRESS 2005
One of the enduring fascinations of neurology is the contemplation of mental states, normal or otherwise. As much as neurologists strive to master the diagnosis and treatment of dementia and other cognitive syndromes, it is an altogether different task to consider what it is like to be demented. Those with normal cognition can only speculate about the experience, an intensely personal state that the affected person is of necessity hard-pressed to describe or explain.
In this short but revealing book, A World of Light, Floyd Skloot presents a novel account of dementia through a narrative that features cognitive impairment affecting not only the central character, but strikingly, the author as well.
A World of Light is a collection of essays centered on observations of the progression of Alzheimer disease in the author's mother. Accounts chronicling the phenomenology of cognitive decline are not new, but the unique feature of this book is the author's own perspective as a patient.
Skloot focuses much attention on his struggle with the sequelae of encephalitis, contracted in 1988 at age 41, which left him with marked cognitive and motor dysfunction. A poet by training, he describes the “viral assault” on his brain: “Connections were frayed and severed, with scar tissue scattered like frozen spots in the fiery landscape of gray matter.” Later, he finds himself at a loss to proceed with his work, bedeviled by memory loss, paraphasic errors, and gait disorder.
Regaining memory proves to be the most elusive goal in the course of his recovery, but progress gradually occurs. In the preface, Skloot admits that his first work after recovering from encephalitis, a book entitled In the Shadow of Memory, took him eight years to complete. Even now, more than 15 years after the illness, he continues to notice fluctuations in performance, sometimes related to acute physical illness but often for reasons he cannot explain.
Much of A World of Light was in fact written during a period of relative clarity that permitted what he calls a “reassembling” of his life. The result is a detailed and poignant exploration of memory loss, and recovery, by one who clearly has first-hand knowledge of both.
Writing about people with dementia presents challenges under any circumstances. The human tragedy of the subject must be honored lest the gravity of the predicament be trivialized. But there are inherent limits to descriptions of a person so impaired that she repeatedly asks, for example, why her son does not marry the pretty girl with him despite the oft-repeated reply that the couple has been married for many years. All of this is accentuated by inevitable layers of complexity that arise when one's own mother is in a state of progressive infirmity. Yet the book is up to the task.
Dementia is presented in light of acute awareness of what has been lost and what can also be gained. Gentle humor appears as several valiant, variably successful attempts of caregivers to deal with practical issues of cognitive decline are recounted. And despite the author's own fears of developing Alzheimer disease – perhaps hastened by the effects of lingering post-encephalitic brain damage – he displays a touching devotion to his ailing mother.
Neurologists will recognize much in this book about the aberrations in memory, language, and behavior that typify people with Alzheimer disease. Perhaps most remarkable is the change in personality of Skloot's mother, whose imperious, self-absorbed persona before dementia is replaced by a more cheery and affable demeanor as the disease settles in.
An aspiring singer and actor in Brooklyn who craved bright lights, fame, and fortune but was relegated to obscure community theater performances, because – as she saw it – of her marriage to a butcher, she harbored lasting resentments about life's vicissitudes. On many occasions this simmering discontent resulted in her son's embarrassment or outright suffering when he was a child. But all that seemed to change as her dementia advanced; controlled anger was exchanged for blissful passivity.
The mellowing of personality by degenerative brain disease is familiar to anyone who works in a dementia clinic, and suggests paradoxically that behavior may be favorably altered even as memory is destroyed. Amnesia, so troubling as a symptom, may have served the salutary purpose of erasing a lifetime of unmet expectations and bitter disappointments.
“Now that dementia has ravaged her memory,” Skloot ventures, “she no longer hoards and seasons her indignation.” Perhaps she is “a happy little girl” who was “buried in a sea of wrongs…Now that memory is gone, so is the torment. Her mind seems more at ease.” Indeed, he finds himself moving closer to his mother as both cope with their memory disorders: “We move together in counterpoint rather than in our familial discord, given one last chance at concord by the ordinary calamity of brain damage.”
THE VALUE OF MEMORY
Skloot devotes several essays in the collection to his own efforts to regain normal cognition. Keenly aware of his cognitive deficits, he persistently tries to find a way to proceed with creative writing. Several chapters diverge into other topics, affording relief from the steady litany of mental failures recounted in his mother. He writes convincingly, for example, of episodes in his life when he and his wife Beverly contended with misfortunes in their western Oregon home – water shortages, massive snowstorms – which become more alive in the retelling. He delights in the details of these events, exultant to have the remembrance necessary to craft the stories. The reader, at first puzzled as to why these seemingly unrelated adventures should be included in the book, soon comes to sense a certain triumph in their recall.
A writer cannot write without a store of knowledge with which to work; indeed, the written word is his essence as he deals creatively with the world. Memory is what spreads light into darkness, a profoundly important, almost defining, component of human existence. “Death, I feel, is a crossing into nothingness, and the only afterlife is in the realm of…survivors' memories.” Reassuringly, his daughter, Rebecca, is also a writer who will carry memory forward by writing books of her own.
In the end, A World of Light is an engaging, sobering, and inspiring book. By no means is it a light read, but its pages will prove rewarding to those interested in the mysteries of human memory and its decline. The literary gifts of this writer shine brightly through despite his post-encephalitic state. Tragedy is leavened with humor, and the reality of dementia comes to be accommodated with empathy and understanding. Along the way, the value of memory becomes highlighted by the prospect of its dissolution. Equally impressive is the courage of the author to write such a book, with its requisite immersion not only in his mother's dementia but his own vexing cognitive challenges. Never indulging in self-pity, Skloot has presented a book well worth reading.