In “The Inner Lives of Disordered Brains” (Spring 2005) Anne Harrington, Ph.D., Harvard professor of the history of science, explored how both scientists and the general public have become fascinated by the subjective aspects of brain disease. Pioneered by writers such as Oliver Sacks, M.D., a new literary form we might call the neuronarrative is giving voice to people previously considered only interesting cases. This voice can be heard not only through nonﬁction but, increasingly, in movies, television dramas, and novels. In this article, neurologist Todd E. Feinberg, M.D., discusses four recent novels in which the protagonist confronts a brain disease or disorder. How accurate is the “neuroangle” in these stories, and what is the story behind the story—the back story—that informs the author’s creative vision? What can we learn from the struggles of these ﬁctional heroes?
When a neurologist examines a patient with a brain disease, he asks himself, “Where is the brain lesion?” “What is its cause?” and “What can we do about it?” These questions speak to the objective facts of illness, those aspects of brain disease that can be visualized on brain scans and that the neurologist was trained to address. In contrast, most neurologists are not required to wonder, “What is it like for the patient to have this condition?”
Understanding the subjective experience of illness—what it is like to be a disordered brain—has not been a traditional part of a physician’s or scientist’s work. But Sigmund Freud’s use of detailed personal case histories, which explored his patients’ subjective experiences of their psychological conditions, set the stage for the development of a literature that examined both the subjective and the objective aspects of medical illness. Following Freud’s lead, Soviet neuropsychologist Alexandr Luria, in such classic works as The Mind of a Mnemonist (1965), explored the human, personal, and emotional aspects of neurological illness. Other writers in this vein would follow, the most inﬂuential being Oliver Sacks, who in books such as Awakenings (1973) would further familiarize the nonscientiﬁc community with a literary analysis of neurological dysfunction and the workings of the brain.
Freud, Luria, and Sacks wrote about actual clinical cases, and, although the degree of artistic license varies, their books are considered works of nonﬁction. Although writers from Fyodor Dostoevsky to Virginia Woolf to Gunter Grass have created compelling protagonists for their novels who have brain disorders such as epilepsy, post-traumatic stress disorder, and autism, contemporary brain science seems to be propelling an explosion in “neuroﬁction.” Because I make extensive use of my patients’ narratives in my own studies of “neurological disturbances of the self,” I was curious to see just how true to life four recent examples of this genre appear and why these particular authors chose neurological themes. I was surprised to learn that the answers to the latter question turned out to be one of the more interesting aspects of this project. Reﬂecting on the four books together also showed me some commonalities in the challenges faced and insights gained by the lead characters on their ﬁctional journeys.
MEMORY BOOK: A BENNY COOPERMAN MYSTERY BY HOWARD ENGEL
The Penguin Group, 2005
“Are you all right?” she asked. “What the hell is ‘all right’ in these circumstances? Will you tell me what’s going on? Why can’t I remember yesterday? What’s wrong with me? What have I got to look forward to? Am I ﬁnished? That’s the question, damn it.”
Seasoned and hard-nosed private investigator Benny Cooperman wakes up confused and disoriented in a Toronto rehabilitation facility. He has a vague memory that he was involved in a train wreck but later learns that he was the victim of an attempted murder and left for dead inside a Dumpster. As if this were not bad enough, it turns out that he was found alongside a murdered woman, one Flora McAlpine, a professor from the nearby university. In his enervated state, Benny must use all his investigative skills to clear himself of the crime and to ﬁnd the true culprit.
The Neuroangle. Benny experienced a major head injury, resulting in failure to form new memories (anterograde amnesia), loss of memory for events that occurred before his head injury (retrograde amnesia), failure to recognize objects by looking at them (visual object agnosia), and the inability to read but with the ability to write preserved (alexia without agraphia, referred to in the book by the Latin alexia sine agraphia). Because of his retrograde amnesia, Benny cannot recall what happened to him in the months before his injury, so he must rely on his intact sleuthing abilities and powers of deduction to reconstruct what case he was working on at the time of the crime. Because of his anterograde amnesia, he must write down all his observations and hypotheses in his memory book so he can remember what he has ﬁgured out. To further complicate matters, because of his alexia without agraphia, he can barely read what he has written.
Reality Check. The portrayal of neurological disabilities in Memory Book is dead-on. For example, Benny initially thinks he is in his hometown of Grantham, when in reality he is in Toronto. This sort of disorientation to one’s usual or former place of residence is common in actual patients with amnesia after brain injury. Although Benny has difﬁculty reading whole words, he is able, laboriously, to read by deciphering single letters at a time, a strategy called letter-by-letter reading that is well known to speech therapists. Benny feels the lump on his head on the “upper left-hand side,” indicating he probably had a lesion in his dominant hemisphere (the left hemisphere in a right-hander), and alexia without agraphia is indeed most commonly caused by a left occipital and corpus callosum lesion in the language dominant hemisphere. A lesion in this area also could produce visual agnosia and anterograde amnesia, especially if the lesion were large and resulted in brain swelling. Signiﬁcant retrograde amnesia would be less likely to occur if the damage were caused by a stroke, but it could result after traumatic brain injury, as was the case with Benny.
The Back Story.Memory Book is the 11th book in Howard Engel’s Benny Cooperman series. As I read it, I was astounded at how accurate a portrayal of this particular type of brain lesion it contained. I kept asking myself, “How could he know that? This guy must have read a lot of case histories!” It was not until the acknowledgments at the back of the book that Engel revealed that he himself had a stroke several years before writing Memory Book and that the book was, in part, an effort to show what it is like to experience a brain lesion. In the Afterword, Oliver Sacks describes how Engel awoke one morning, suddenly unable to read. As Sacks recounts, Engel wrote to him in a letter that “Whatever I’m looking at...turns into unfamiliar blocks of type that could at ﬁrst glance be taken for Serbo-Croatian.” Indeed, Engel had a left occipital stroke, resulting in a right visual ﬁeld defect, alexia without agraphia, and visual object agnosia. Sacks says that it was while Engel was in rehabilitation that he had the idea for a book in which Benny Cooperman would have to solve a mystery while cooped up in a rehabilitation hospital with alexia without agraphia.
THE SPEED OF DARK BY ELIZABETH MOON
Ballantine Books, 2003
When I try to imagine the future—the rest of this day, tomorrow, next week, the rest of my life—it is like looking into the pupil of my eye, and only the black looks back at me. The dark that is there already when the light speeds in, unknown and unknowable until the light arrives. Not knowing arrives before knowing; the future arrives before the present. From this moment, past and future are the same in different directions, but I am going that way and not this way. When I get there, the speed of light and the speed of dark will be the same.
Some time in near-future America, advances in diagnosis and treatment have resulted in vast improvements in the functioning of people with autism. Many of these people, although they feel different from the so-called “normals,” are working and participating in the mainstream of society. Despite this, they exist as a marginalized minority and are treated in certain respects like second-class citizens, largely because of their difﬁculty in dealing with conventional social situations. Lou Arrendale is one such person:
I am hearing the labels crowding in on me, the labels they put in my record when I was a child. Primary diagnosis Autistic Spectrum Disorder/autism. Sensory integration deﬁcit. Auditory processing deﬁcit. Visual processing deﬁcit. Tactile defensiveness. I hate the labels; they make me feel sticky, where they are stuck to me with professional glue I can’t pry off.
In Lou’s case, thanks to early diagnosis and aggressive therapy for his condition, he is able to live in both the autistic and the normal worlds. Now 35 years old, Lou ﬁnds this both a blessing and a curse, because, although his genius for pattern analysis allows him to build a career in the pharmaceutical industry and become an expert competitive fencer, his impairments in the seemingly simpler social tasks, such as evaluating the meaning of emotional facial expression, metaphorical language, humor, and body language, prevent him from even asking to dinner the fellow fencer Marjory with whom he has fallen in love.
Lou and a group of fellow autistics work at a large pharmaceutical company, where their uncanny skills at pattern analysis enable them to do certain rariﬁed work that is beyond the capabilities of even advanced computers, much less the “normals” with whom they work. When an experimental genetic procedure that holds the promise of totally reversing their autism becomes available, they are nearly compelled by a sinister boss into accepting it. The possibility forces Lou and his coworkers to confront the questions of whether they would be willing to trade their special abilities to ﬁt into society at large, and, if they did allow the treatment to alter their brains, whether they would still be themselves. Would those changes be good or bad? Lou is concerned:
If I lose the memory of what this is like, who I am, then I will have lost everything I’ve worked on for thirty-ﬁve years. I do not want to lose that. I do not want to remember things only the way I remember what I read in books; I do not want Marjory to be like someone seen on a video screen. I want to keep the feelings that go with the memories.
The Neuroangle. The character Lou’s autism allows Moon to explore the inner world of the autistic person. Telling the story most often from the ﬁrst-person point of view, Moon explores Lou’s inner psychological world: his exquisite super-sensitivity to the feels, smells, and sights of the world; his obsessive need for order and consistency in his daily routine; and his fascination with geometric patterns and a swiveling fan with its pinwheels and spirals that ﬁlls his ofﬁce with a “twinkling light.” I found particularly enlightening Moon’s descriptions of Lou’s struggle to comprehend and survive within his social environment as she relates Lou’s perplexity at the subtleties of social discourse. Although Lou ponders what it would be like to be normal, I found myself increasingly drawn into Lou’s world and wondering what it would be like to be autistic.
I found particularly enlightening Moon’s descriptions of Lou’s struggle to comprehend and survive within his social environment as she relates Lou’s perplexity at the subtleties of social discourse. Although Lou ponders what it would be like to be normal, I found myself increasingly drawn into Lou’s world and wondering what it would be like to be autistic.
Reality Check. Lou is described as autistic, but he would more likely be described today as having Asperger syndrome. Although the diagnostic categories are still being revised, and are not entirely clear, according to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders-IV, people with Asperger syndrome display many of the features of autistic disorder, such as impairments in social interaction (eye contact, facial expression, nonverbal social expression), a failure to develop age appropriate peer relationships, and stereotyped and restricted patterns of interests and a tendency toward ritualized motor behaviors. One signiﬁcant difference between the two conditions, however, is that, unlike people with more severe forms of autistic disorder, those with Asperger syndrome do not display the signiﬁcant developmental delay in language, communication skills, and cognitive development that are characteristic of autism. In the logic of The Speed of Dark, early intervention and therapies available in Lou’s time (but not ours) enabled him to achieve psychological and social capacities that in our time would be unlikely or impossible.
The character of Lou reminded me of the extraordinary Temple Grandin, Ph.D., who is an associate professor of animal science at Colorado State University. She designed a cattle restrainer system used by almost half of all the processing facilities in North America and is the author of many books, tapes, and articles on the subject of autism. Grandin considers herself autistic, but her level of social and cognitive functioning suggests she falls somewhere between autism and Asperger syndrome. In Grandin’s autobiographical book Emergence: Labeled Autistic (Warner Books, 1996) she described her own struggle “groping her way from the far side of darkness,” a phrase that echoes Moon’s title and theme. Indeed, in a Reader’s Guide at the end of the book, Moon discusses how books by Grandin, among others, inspired The Speed of Dark.
The Back Story. Throughout my reading of The Speed of Dark, Moon’s compassion and insight into autism was so apparent that I had a sense that the author must have some personal experience with the disorder, beyond what one might get from reading clinical descriptions. Indeed, she does. In the Reader’s Guide, Moon reveals that “the starting point and the inspiration” for this book was her son, who has autism.
BORN TWICE: A NOVEL OF FATHERHOOD BY GIUSEPPE PONTIGGIA
These children are born twice. They have to learn to get by in a world that their ﬁrst birth made difﬁcult for them. Their second birth depends on you, on what you can give them. Because they are born twice, their journey through life is a far more agonizing one than most. Yet ultimately their rebirth will be yours too. This, at least, has been my experience. I have no more to tell you. Thirty years later, I want to say thank you.
Professor Frigerio, the narrator of the novel, and his wife, Franca, are the parents of Paolo, a child with cerebral palsy. Paolo was the product of a breech birth, and, because of poor advice from the obstetrician, he has brain damage that leaves him with normal intelligence but severe neurological impairments. The simplest motor tasks, action we take quite for granted, are a challenge for Paolo. His gait is so ungainly that climbing a few stairs is nearly impossible. His speech is extremely difﬁcult to understand. Pouring a glass of water without spilling any is an accomplishment.
Frigerio has reason to feel guilty for Paolo’s condition. He was in the midst of an extramarital affair at the time of Paolo’s birth, and Franca had learned of the affair during her pregnancy. Frigerio wonders whether perhaps Franca’s extreme upset at the discovery of the affair caused physical problems with the fetus. If he had been present more during the pregnancy, would things have turned out differently? The novel is, in large part, the story of how Frigerio, Franca, and Paolo’s older brother, Alfredo, struggle to deal with each other, with themselves, and with the outside world in the face of Paolo’s crippling neurological impairments. With a brutal honesty that is as shocking as it is revealing, Frigerio relates the family’s feelings:
Alfredo had been dethroned and could not be resigned to that. To top it off, he didn’t even like his brother. The frailty that should have made him feel more tenderly toward him— there’s that should again—actually drove a stake between them. The pathology distanced him. His discomfort changed to repulsion. I knew what he was going through because sometimes I felt the same way.
The central problem confronted by Frigerio is how to love his son, how to be a good and loving and caring father despite his true feelings about Paolo’s difﬁculties. Try as he might, unlike his wife, Franca, who is at peace with Paola and only feels compassion for him, Frigerio is simply incapable of looking past the surface of Paolo’s physical being and appreciating the progress Paolo makes and his valiant efforts to overcome his limitations. But for Frigerio, Paolo is just not normal, and therein lays the impenetrable barrier between him and his son:
Sometimes I shut my eyes and then quickly open them again. Who’s that boy walking unsteadily near the wall? I’ve never seen him before. He’s disabled. I try to think about what my life would have been like without him in it, but I can’t. We can think of many lives, but we can never disavow our own. Once, when I was watching him as if he were someone else and I were someone else, he waved at me. He leaned against the wall and smiled. For a moment it was as if we were meeting for the very ﬁrst time.
The post-hoc telling of the story, set 30 years after Paolo was born, never reaches a grand resolution. Instead, Pontiggia takes the reader along with Frigerio, Paolo, and the rest of the family as they experience success and failure, joy and grief, anger and love, all the emotions that every family experiences in the course of their lives together.
The Neuroangle: Paolo experienced either brain anoxia (lack of oxygen) or direct brain damage as a result of a forceps delivery, or a combination of the two. He displays classic features of cerebral palsy, including impaired spastic gait (ataxia), inarticulate speech (dysarthria), and incoordination, but with relatively or totally preserved intelligence.
Reality Check. As with the other books I discuss, the accuracy of neurological detail in Born Twice is impeccable. The descriptions of Paolo’s neurological development, his problems with motor skills, and his difﬁculties with the simplest of actions are textbook in their accuracy. Also of note are the descriptions of the family’s not always positive interactions with Paolo’s physicians and therapists, which are rendered with verisimilitude. Anyone who has experience with a child with cerebral palsy will feel quite familiar with these scenes.
The dedication “For the disabled who struggle not to be normal but to be themselves” is not only relevant to the theme of the book, but it is also a clue to its inspiration.
The Back Story. While reading Born Twice, I was fairly certain that this novel was at least semi-autobiographical. But Pontiggia, unlike Engle and Moon, does not explicitly reveal anywhere in the book that he is the father of a disabled child. The dedication “For the disabled who struggle not to be normal but to be themselves” is not only relevant to the theme of the book, but it is also a clue to its inspiration. I was able to learn, particularly from notes about The Keys to the House, a ﬁlm released in 2004 inspired by Born Twice, that the novel is based on the author’s own experience with his disabled son, Andrea. Born Twice was originally published in an Italian edition in 2000; the English version appeared in 2002. Pontiggia died in Milan in 2003, and the confessional Born Twice was his last important work.
LYING AWAKE BY MARK SALZMAN
Like a piece of quartz viewed under a black light, her soul went from achromatic to beyond chromatic. Fractures and other imperfections—including her epilepsy—became irrelevant; a much deeper beauty revealed itself now. Faith is light, doubt is shadow. If you remove the obstacles to faith, all shadows disappear.
In a monastery in the heart of Los Angeles, the Sisters of the Carmel of St. Joseph live in nearly perfect isolation. The nuns rarely speak to each other as they go through their daily chores; when they do speak, it is out of necessity. Their labor is interrupted only by the bare necessities of life and by their prayers. Sister John of the Cross, the product of a broken family and an unhappy childhood, entered the order at the age of 20. Although she had served God’s will dutifully, 20 years later Sister John’s spirituality had never come to the full fruition she had imagined it would when she joined the order.
Sister John’s malaise changes when she develops ﬁrst headaches, then full-blown seizures, and with the seizures experiences ecstatic visions of God’s palpable presence before her. She is reborn with a new sense of purpose, and, perhaps for the ﬁrst time in her life, experiences true happiness and is at peace. But when her seizures begin to increase in frequency, Sister John’s fellow nuns insist that she seek a neurological consultation.
The Neuroangle. Her new-found religious bliss is threatened when she learns that she has epilepsy, the result of a small meningioma—a benign brain tumor—in her right temporal lobe and that its surgical removal will almost certainly cure her epilepsy. Having learned that temporal lobe seizures can cause spiritual visions and an increase in religious feelings, Sister John must confront the question of whether her visions of God are “real,” and whether, if she has the offending tumor removed, she will lose her renewed religious devotion. What is God’s will for her?
Reality Check. Here again, the neurology in this novel is accurate. Sister John is experiencing what are known as “ecstatic seizures.” Jeffrey L. Saver, M.D., and John Rabin, M.D., in their 1997 paper in the Journal of Neuropsychiatry and Clinical Neurosciences on the subject of the neural basis of religious experience, describe this type of epileptic experience:
The term ecstatic seizure has been applied to two types of experience, often coexisting. The ﬁrst is primarily an emotional experience of deep pleasure, the cognitive content of which may vary. The second is primarily a cognitive experience of insight into the unity, harmony, joy, and/or divinity of all reality, usually with pleasurable accompanying affect.
Although ecstatic seizures are rare, when they do occur, they are most often in the temporolimbic structures of the brain, so Sister John’s temporal lobe tumor would be ideally situated to produce this type of seizure. The association between epileptic and other organically derived visions and experiences and religious feelings is well documented in the neurological literature. Indeed, Sister John took her Carmelite name from John of the Cross, a Spanish religious leader and mystic who was a close associate of Saint Teresa of Avila, a central ﬁgure in the history of the Carmelite order. Saver and Rabin report that Saint Teresa of Avila is among many religious, historical, and artistic ﬁgures who experienced seizures. Sister John’s ambivalence about her seizures, and their ambiguous role in her heightened religious experiences, is reﬂected in a similar dilemma that was faced by Saint Teresa. As noted by Salzman:
Saint Teresa’s seizures...were a matter of Church record. No one agonized more than she over the question of how to tell the difference between genuine spiritual experiences and false ones. At one point she even feared for her sanity, but after being assured by Saint Peter of Alcantara that her spiritual favors were from God, she never again lost her conﬁdence in her visions, even after being denounced to the Inquisition.
Dostoevsky is often cited as the classic example of an artist whose religious feelings were strongly inﬂuenced by ecstatic visions. Saver and Rabin note that this great Russian writer—who had epilepsy—provided numerous descriptions of his own “ecstatic-religious experiences” in his autobiographical writings and ﬁction. In Lying Awake, Sister John is given some articles on the subject of religious experiences and epilepsy and wonders “...if Dostoevsky had been given the option of treatment…would he have taken it? Should he have?”
The Back Story. Unlike the authors of the ﬁrst three novels, Salzman apparently does not have any personal experience with epilepsy. In an interview he gave to Carol Lloyd in January 2001 for Salon.com, Salzman relates that the idea for Lying Awake originally came from an essay he read by Oliver Sacks, in which Sacks mentions that temporal epilepsy could cause an intensiﬁcation of religious experience and spirituality. Salzman relates that this made him wonder what would happen if a person who already had made a commitment to a religious life suddenly discovered that she had epilepsy. Would she decide to accept a cure? He later discovered that Teresa of Avila may have had neurologically driven spiritual experiences, which led him to pick the Carmelite Order as the setting for his book.
Each of these four works of “neuroﬁction” seeks to convey the subjective experience of a neuropathological condition, and I think that each succeeds. For Memory Book, The Speed of Dark, and Born Twice, one compelling reason is evident. In the case of Memory Book, its author, Howard Engel, had the same kind of stroke and resulting impairments as detective Benny Cooper-man. Just as Cooperman must use his wits and remaining abilities to solve the murder case, Engel needed to use his remaining talents to write the book. Similarly, it does not surprise me that Elizabeth Moon produced such a compelling, convincing, and compassionate portrait of autism; she is the real-life mother of an autistic child. And Giuseppe Pontiggia, when writing about a child with cerebral palsy, had 30 years of experience with this disorder before putting pen to paper. When reading these works, I had a clear sense of how close the writers were to their characters and the illnesses they had.
Reading about Lou’s difﬁculties and those of his fellow “autists” with social interactions also deepened my awareness of the social conventions that we take for granted and helped me understand why autism would create enormous obstacles to socially effective relationships, even in the presence of normal intelligence.
As a neurologist, I found that The Speed of Dark and Born Twice had the greatest effect on my perception of the illnesses described. Moon so successfully takes the reader into Lou’s mind that, when you ﬁnish the book, you can almost feel what it is like to be autistic, or at least what it is like to be Lou Arrendale. For the days I was immersed in the book, and even now, months later, I ﬁnd myself more aware of my senses, of the sights and sounds and smells around me. Reading about Lou’s difﬁculties and those of his fellow “autists” with social interactions also deepened my awareness of the social conventions that we take for granted and helped me understand why autism would create enormous obstacles to socially effective relationships, even in the presence of normal intelligence.
In Born Twice, it is the mind of the author, Pontiggia, that we enter as he reveals his complicated and conﬂicted relationship with his son, ﬁctionalized as Paolo. Whether, by the end of this book, one likes Frigerio or hates him—or both—one cannot help but be engaged by the struggle in which both Frigerio and Paolo ﬁnd themselves. No easy answers are given in this book, no happy ending, but there is a sense that within the struggle to adapt itself great value can be found. Even if the reader dislikes Frigerio, one cannot help but love Paolo, who ﬁghts the good ﬁght with his impairments as well as with his father, and, in the end, wins both.
WHAT IS NORMAL ANYWAY?
The question of what, after all, constitutes a normal person is at the heart of these books, although most explicit in The Speed of Dark and Lying Awake. And if a person is not “normal” neurologically, is that necessarily bad?
In The Speed of Dark, Moon certainly feels her character, Lou, despite his disability, has something special, something unique, that the world needs. At one point, in order to better understand his autism and its possible cure, Lou reads a book about the nervous system and wonders:
The book answers questions other people have thought of. I have thought of questions they have not answered. I always thought my questions were wrong questions because no one else asked them. Maybe no one thought of them. Maybe darkness got there ﬁrst. Maybe I am the ﬁrst light touching a gulf of ignorance. Maybe my questions matter.
Lou cannot understand why it is so important to the rest of society that he is cured of his autism:
Do I need to be healed? Who does it hurt if I am not healed? Myself, but only if I feel bad the way I am, and I do not feel bad except when people say that I am not one of them, not normal. Supposedly autistic persons do not care what others think of them, but this is not true. I do care, and it hurts when people do not like me because I am autistic.
If everything on earth is in some way part of God’s plan, Lou thinks, then maybe there is a reason he is the way he is. As he explains it to his priest one day in church:
But everyone has always wanted me to change as much as I could, be as normal as I could, and if that is a correct demand, then they cannot believe that the limits—the autism— come from God. That is what I cannot ﬁgure out. I need to know which it is.
In a similar vein, Sister John, in Lying Awake, wonders why she needs to be healed at all.
I can’t bear the thought of going back to who I was before. I prayed and scrubbed and went through the motions with no feeling of love, only a will to keep busy. If the surgery were to take my dream away, everything I’ve gone through up to now would seem meaningless. I wouldn’t even be able to draw inspiration from my memory of it; I couldn’t face that desert again, not this late in my life.
Like Lou, Sister John wonders why, if God controls all things, he would have given her epilepsy.
She conﬁded her diagnosis and her struggle to sort out God’s will from her own in the matter of how to deal with the illness. “I want to make the right decision,” she said, “but I feel confused. Should I automatically assume that my mystical experiences have been false, or should I stand behind what my heart tells me? Is God asking me to let go of concerns for my health, or is he asking me to let go of my desire for his presence?”
The nature of normalcy is also explored in Born Twice. Although Paolo is not neurologically normal, he manages to accept himself in spite of his limitations. Although his brain is impaired, his soul remains unscathed. In contrast, Frigerio is never able to accept his son’s handicaps. It becomes increasingly apparent that, in many ways, it is Frigerio who is emotionally disabled, and by the end of the story, we are at least somewhat more inclined to pity the “normal” professor than his “disabled” son.
All four books address what it is like to be “different” and what that means for people with brain disorders, for their families, and for society. The neurological conditions described in these books present special challenges, but their outcome is not always tragic. As we have seen, in some people, such as Temple Grandin, who have autistic spectrum disorders, a neurological abnormality may bring with it special talents. Despite the obvious difﬁculties of having epilepsy, some great geniuses surely would not have had the same order of creativity had it not been for their seizures. In the case of cerebral palsy, the Irish poet and painter Christy Brown, who was the inspiration for the Academy Award winning ﬁlm My Left Foot, had cerebral palsy but learned to paint and type with his left foot. And through Benny Cooperman, Howard Engel’s alter ego, Engel shows us how suffering from a stroke may not necessarily be the end of the line but may even bring a new beginning.
All four books address what it is like to be “different” and what that means for the person with the brain disorder, for their families, and for society. The neurological conditions described in these books present special challenges, but their outcome is not always tragic.
Indeed, it is my personal experience that many if not most of my patients learn to live with and adapt to their neurological conditions, and that this capacity is sometimes more important to their overall well-being than neurological improvement per se. That said, none of my patients with cerebral palsy, or strokes, or seizures, are happy that they have these conditions. They come to me for help and perhaps even a cure, which I attempt to provide. If given a choice between being sick or not, they would choose health.
Perhaps a more pressing moral question is whether, if we could detect the presence of neurological illnesses such as autism prenatally, society should allow medical science to eliminate these conditions, I have seen ﬁrst hand the suffering experienced by the parents of an autistic child, and I suspect if prenatal detection and correction were possible, most parents would choose that option. Whether and to what degree society will support this sort of prenatal elimination of neurological “differences” will almost certainly become a major issue in the not too distant future.
These four works do a superb job of dramatizing a neurological disease or condition— no surprise, because three of the authors had intense and intimate personal experience with the disorders they wrote about. In the case of the fourth book, Lying Awake, the author appears to have gained insight from descriptions of a real person with a neurological illness, Saint Teresa, who faced a dilemma similar to that of his protagonist.
Surely their pain served as the inspiration to write these works and the authors’ personal closeness to neurological diseases gives these books a unique intimacy.
The characters in these novels must cope with and adapt to their conditions in a manner that, I presume, reﬂects the depth of the personal struggle the authors themselves experienced dealing with the effects of serious and disabling neurological illness in themselves or their loved ones. Surely their pain served as the inspiration to write these works and the authors’ personal closeness to neurological diseases gives these books a unique intimacy.
The authors also raise some intriguing questions about illness, health, and the sometimes ﬁne line between madness and inspiration. As I read their books, I was reminded that, as neuroscience progresses, such questions will surely move from the stuff of ﬁction to questions raised in science journals, newspaper articles, and voting booths. I think these books will help us prepare for that future.