Two Personal Explorations of Visual Dysfunction
The Mind's Eye. By Oliver Sacks. 288 Pages. Knopf 2010.
You Don't Look Like Anyone I Know: A True Story of Family, Face Blindness, and Forgiveness. By Heather Sellers. 368 Pages. Riverhead 2010.
One of the fascinations of neurology, particularly evident in behavioral neurology, is considering the impact that disorders of the nervous system exert on the personal lives of those afflicted. What is it like to suffer from visual loss, agnosia, alexia, aphasia, and the like? The clinical methods of neurology can begin to investigate these questions, but most efforts of clinicians are naturally concentrated on characterizing the patient's problem, discovering its cause, and offering treatment. The actual experience of the deficit remains something of an abstraction, inaccessible through the detached, objective prose of the clinic note, and the meaning for the sufferer is largely left untold.
In new books by two gifted writers — one, a distinguished neurologist and the other, an accomplished author and English professor — the human side of nervous system dysfunction is vividly portrayed, with singular attributes rendering each extraordinary.
THE MIND'S EYE
In The Mind's Eye, Oliver Sacks offers his eleventh book, remaining true to form in basing his discourse on carefully acquired observations of people with disorders compromising the operations of the nervous system. The book is a collection of seven essays, each founded on the study of an affected individual who can report in some manner the onset of the disorder, its course, and its sequelae in human terms. While all of these tales merit a careful reading, an arresting feature of this book is that two of the chapters deal with Sacks himself.
The volume begins with a penetrating account of a concert pianist who slowly develops the inability to read music. In Sacks' now familiar style, the reader is steadily drawn in to the drama of the case, this time involving an exceptionally talented musician who loses that capacity to recognize the music of her life and profession because of posterior cortical atrophy. The illness is chronicled over more than a decade, and while the disease inexorably progresses, major adjustments are also made as she faces the problem with determination and the compassionate help of others: “Her adaptations to the agnosia were extraordinary — a lesson in what could be done to hold together a life in the face of ever-advancing perceptual and cognitive challenge.”
In another essay, Sacks describes a reverse situation — that of a person reveling in the unexpected enhancement of visual function. In this case, a woman with no stereoscopic vision because of strabismus in early life receives prism eyeglasses in her fifties, and can therefore see in three dimensions for the first time. The “absolutely delightful” experiences she can then enjoy testify to the enrichment of vision conferred by stereoscopy — and the impoverishment of vision without it
The core of this book, however, deals with Sacks himself. In the chapter “Face-Blind,” he freely describes his own longstanding problems recognizing peoples' faces. With characteristic candor he writes: “I have had difficulty recognizing faces for as long as I can remember.” He goes on to speculate that this developmental prosopagnosia may account for what may be seen as peculiarities of his personality, leading him to be accused of absentmindedness, shyness, reclusiveness, social ineptitude, eccentricity, and even Asperger syndrome. Neurologists who recall their teaching that prosopagnosia is acquired after focal lesions of visual association regions will find intriguing this account of the far more common congenital form.
In a later essay, “Persistence of Vision: A Journal,” Sacks adopts a still more personal tone while discussing his second and more ominous visual problem, melanoma in the right eye. Using a journal format extending from 2005 to 2009, he leads the reader through the onset, diagnosis, treatment, and course of this illness. After initial apprehension and considerable discouragement, he finds a way to cope with and adjust to the condition. He notes, for example, that the enlarged blind spot caused by the tumor becomes filled in with colors and patterns, representing healthy brain compensating for primary visual loss. As the essay ends, a more sobering note is sounded as a new ocular hemorrhage again compromises his vision, by which time the reader fervently hopes that the author can again summon the adaptive skills about which he writes with such eloquence.
In a last essay on adaptation to blindness, Sacks expounds on a hopeful theme: “The visual cortex, deprived of visual input, is still good neural real estate, available and clamoring for a new function.”
YOU DON'T LOOK LIKE ANYONE I KNOW
Complementing this neurologically grounded work, Heather Sellers' You Don't Look Like Anyone I Know is equally impressive as the memoir of a similar predicament from a literary perspective. Here is the exquisitely written story of a keenly observant young woman who comes to a neurologic explanation of a vexing problem apparent in her early years but wholly misunderstood until much later.
Born to a schizophrenic mother and alcoholic father, Sellers grew up wondering whether she too had mental illness after repeated episodes such as walking past familiar people without recognizing them — an awkward situation indeed. Her parents regarded her as emotionally disturbed, which only made more bizarre the life she had with a mother so paranoid she nailed windows shut and covered them with blankets, and a father whose undergarments included a bra and panty hose. In her thirties, however, Sellers realizes through impressive detective work that she may have a neurologic disorder impairing her ability to recognize faces.
Coming across the obscure syndrome of prosopagnosia, she reads voraciously and finds her way to Harvard, where researchers test her facial recognition and find that she, like Sacks, indeed does have this disorder. Her impairment is severe, but still she gains much relief from this knowledge. She further discovers that the condition may be quite common, affecting to some degree as many as one in fifty people. With these revelations, fears of mental illness quickly dissipate. Life becomes less confusing and she more confident, even as faces remain imperceptible and some other familiar cue such as hair style is required to identify people her visual system sees but cannot recognize.
Sellers even finds an advantage in having prosopagnosia: she becomes capable of seeing people for who they really are, even as their faces — superficial, less revealing — remain undifferentiated. Incredibly perhaps, she continues to love her parents despite all their faults, seeing through the façade of their psychiatric struggles to discover that in their way they loved her as best they could.
Summarizing her unusual tale, she explains how “The disorder that had plagued me my whole life has emerged from the shadows … and, over time, it became knowable and manageable … What I ended up with is the story of how we love each other despite immense limitations.”
Reading these books together proved to be a fascinating journey through a variety of perceptual disorders with the masterful guidance of two much different but complementary observers. The neurology of vision is suffused in these pages with elegant descriptions of the experience of visual dysfunction. These books converge on higher visual disturbances, most notably in the strange landscape of prosopagnosia, and much can be learned of this syndrome and recent advances in its understanding.
On a deeper level, these volumes evoke a compelling vision of resilience and adaptation. Both Sacks and Sellers gracefully recount how their respective visual impediments at first serve up major challenges, and then yield with time and understanding to the adaptive power of the human being in whom they are manifest. One can surely take inspiration from these books — these writers have admirably faced and overcome major visual obstacles — and behind it all is the brain, wondrous in its ability to compensate for the misfortune that has occurred. •
Dr. Filley is professor of neurology and psychiatry and director of the Behavioral Neurology Section at the University of Colorado-Denver School of Medicine.
UP CLOSE & PERSONAL WITH OLIVER SACKS
Neurologist and author Oliver Sacks, MD, sat down for a series of interview with Ted M. Burns, MD, associate professor of neurology at the University of Virginia, to discuss The Mind's Eye. Download the series of podcast interviews on www.neurology.org: Dr. Sacks discusses alexia without agraphia and the left inferotemporal gyrus (Jan. 4); prosopagnosia and the fusiform gyrus (Jan. 11); posterior cortical atrophy and visual agnosias (Jan. 18), and his thoughts about being a patient and neurologist (Jan. 25).