The dramatic story of one man’s recovery offers new hope to those suffering from concussions and other brain traumas
In 1999, Clark Elliott suffered a concussion when his car was rear-ended. Overnight his life changed from that of a rising professor with a research career in artificial intelligence to a humbled man struggling to get through a single day. At times he couldn’t walk across a room, or even name his five children. Doctors told him he would never fully recover. After eight years, the cognitive demands of his job, and of being a single parent, finally became more than he could manage. As a result of one final effort to recover, he crossed paths with two brilliant Chicago-area research-clinicians—one an optometrist emphasizing neurodevelopmental techniques, the other a cognitive psychologist—working on the leading edge of brain plasticity. Within weeks the ghost of who he had been started to re-emerge.
Remarkably, Elliott kept detailed notes throughout his experience, from the moment of impact to the final stages of his recovery, astounding documentation that is the basis of this fascinating book. The Ghost in My Brain gives hope to the millions who suffer from head injuries each year, and provides a unique and informative window into the world’s most complex computational device: the human brain.
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Clark Elliott, PhD, is an associate professor of artificial intelligence at DePaul University. He holds three teaching certificates for music, the B.M., M.M. (music), and M.S. (computer science) degrees, and a PhD from Northwestern’s Institute for the Learning Sciences with an emphasis on artificial intelligence. He lives in Evanston, Illinois.Excerpt. © Reprinted by permission. All rights reserved.:
Clark Elliott was a mystery to me when we first met. Observing him through my glass front door, I saw that it took him two minutes just to find the doorknob with his hand. When I gave him the simplest of my assessment tests—copying a geometric line drawing—his body went into bizarre contortions as he struggled to complete it. It hurt me to watch this brilliant man put so much effort into such a trivial task. In my decades-long practice in clinically applied neuroscience (CAN), this case was striking. During the two-hour evaluation session, I kept asking myself, “What could have happened in the car accident eight years ago that all of these top medical doctors have missed?” In thinking over my plan for rewiring his brain, I realized that most of Clark’s cognitive and motor behaviors were likely tied to stress on his visual systems, and I wanted him to work in parallel with my highly esteemed colleague the optometrist Deborah Zelinsky, whom he went to see the following week.
Clark was an ideal client. He understood the complexity of the brain and the relationship between sensory input and behavior. And he was compliant, faithfully completing the rigorous cognitive exercises that I created for him—the brain puzzles he was to solve on a daily basis. Most important, he carefully documented his behavioral changes so that I could move him quickly through the exercises that would allow him to regain control of his personal and professional life.
Clark’s story is remarkable. Through his scrupulously documented recovery, he gives a voice and provides hope to millions of people, referred to as the walking wounded, with mild to moderate traumatic brain injury. The plasticity of the human brain is both its power and its weakness. Although the life-sustaining parts of the human brain are “hardwired,” the cognitive parts (located in the neocortex) are not. The part of the brain that allows people to think, to plan, to hope, to dream, to understand language and math, and to recognize themselves and others, is highly malleable.
This plasticity allows people to change their minds and to control their behavior, but it is also this part that suffers the greatest loss from brain injury. Much to the frustration of doctors and patients alike, cellular damage is microscopic and may be diffuse throughout the brain so that conventional scanning technologies cannot detect it.
By the time high-functioning individuals with post-traumatic head injury notice that their memories are not what they used to be, or that they have difficulty thinking through a problem they could once have easily solved, massive brain damage has occurred on a microscopic level. Because their symptoms are medically unverifiable and therefore untreatable, they are usually dismissed as the walking wounded, destined to suffer the pain, frustration, and humiliation of not knowing how much longer their condition will last or how much worse it will become. The Designs for Strong Minds system I have developed to treat such clients who come to me is a program based on a neurocognitive model that relies on the brain’s plastic, reconfigurable nature, and uses attention, intention, and rehearsal to implement learning and behavioral change.
It is important to give credit to two individuals who contributed to Clark’s cognitive restructuring success. Professor Reuven Feuerstein in 1981 introduced me to the original theoretical framework and the system that are the basis of my work, where the tools are context-free visual puzzles organized by logical structure, and the technique is mediation, to change the structure of the brain. It is from Professor Feuerstein that I learned “Intelligence is plastic. . . . Cognition is modifiable at any age.” And Christine Williams of NASA provided me with the opportunity to work with our top scientists, engineers, physicists—literally our rocket scientists—from 1998 to 2005. The tools, more than three thousand paper-and-pencil instruments that I created for NASA (joined by almost ten thousand instruments for children), became the framework, the structure, and the workbooks for Clark to regain his high-level cognitive functioning skills.
After a car accident disrupted his brain function, Clark Elliott embarked on a long and difficult journey to regain mental and physical capacities. His recovery testifies to his own determination, and also to new therapeutic techniques developed by Dr. Markus and myself. At one level, Clark’s story stands out because of his tenacity in pushing through successive phases of recuperation. At another, it supports the concept that visual inputs can affect brain function, which in turn can promote better coordination between brain and body systems. This theme that eyeglasses and mental activity can alter brain function, and brain function alters body function, remains at the forefront during the entire book and is very eye-opening to read.
Central eyesight, which allows us to “see” an object, is the last and slowest visual pathway to be activated during processing and yet, mistakenly, the most common way of evaluating visual function. Other pathways include peripheral eyesight that allows the brain to set a context for such objects, and many non-image-forming retinal pathways that link the external environment to internal systems that control sentience and metabolism. This last group of pathways is routed beneath conscious awareness directly from the retina to the body and affects such critical systems as balance, posture, hormones, neurotransmitters, circadian rhythms, etc. The interaction of all the non-image-forming signaling pathways modulates peripheral eyesight, and in turn the efficiency of central eyesight. Brain trauma such as that which Clark suffered often wreaks havoc on the balance of these three main visual systems.
My work in the field of neuro-optometric rehabilitation is based on the original ideas of Harry Riley Spitler and A. M. Skeffington, in the 1920s and ’30s respectively. Spitler observed that specific color frequencies affected body function, and Skeffington noted that some people could see targets clearly, yet remained visually uncomfortable, often rejecting glasses and preferring to have blurry eyesight. This line of thinking that the eye has connections with both the body and the mind was advanced further by notable optometric contributors including Gerald Getman, who identified links between visual processing and motor development, and Harry Wachs, who used Piaget’s concepts to link academic development in the mind with motor stimulation of the body. In the 1980s, optometrists Bruce Wolff and John Thomas used the image of an eye being one of many doorways into brain function, having entrances and exits to synchronized, multisensory processing. In the 1990s my mentor, Albert A. Sutton, taught me never to think of the eye in isolation. A decade later, Selwyn Super’s fascinating book on the differences between intention, attention, and inattention helped me to solidify rehabilitative concepts. As of 2014, more than 125 European doctors are expanding their thinking to include eye/ear interactions that can be affected by glasses, based on the ideas behind my patented Z-Bell™ diagnostic system.*
One outgrowth of these decades of clinical research has been the intentional use of therapeutic glasses to break old neurological habits, allowing new habits to develop beneath conscious awareness. Neuro-optometric rehabilitation, using customized lenses, can often help patients with different kinds of injuries recover from such lingering symptoms as difficulties with balance, motor control, seizure activity, and executive functioning. Thousands of articles on retinal circuitry—linking modern neuroscience with optometry—describe the pervasive integration of brain and body systems. At the heart of neuro-optometric rehabilitation is how such research can improve the lives of patients. Babak Kateb, M.D., another visionary, founded the World Brain Mapping Association based on the interdisciplinary concepts of translational medicine. At the association’s international meeting this year, neuro-optometry will be one of the featured tracks, because contemporary retinal research has clearly demonstrated how optometry can profoundly affect brain and body functions.
Clark’s amazing saga was written on the basis of his meticulous notes from the moment of his brain trauma until his remarkable recovery almost a decade later. He documents not only the intricate balance between visual/spatial processing and cognition that makes us human, but also the arduous passage from one stage of recuperation to another. As readers follow his story, it is hoped that they will gain a greater understanding of how the mind-eye connection is much more than meets the eye, and how people with many types of brain problems can be helped by carefully prescribed, nontraditional eyeglasses.
This book is intended for those who have suffered from a brain injury and know it, for those who have suffered a brain injury and will not know it until they recognize aspects of their lives in these pages, for those who have family members or friends who have suffered a brain injury, and for those who are simply interested in the magnificent inner workings of the most powerful computing device on earth: the human brain.
Stories of my fellow concussion survivors have flooded the media in recent years: returning combat veterans who have suffered traumatic brain injury (TBI), professional athletes who are demanding accountability from sports leagues and helmet makers, and some of our country’s youth who have suffered troubling sports concussions. Given the millions of TBIs that are even reported each year in the United States alone, this is, yes, a quiet plague of epidemic proportions. Yet our society is only grudgingly coming to recognize that concussions are serious and life-changing injuries that may have lingering, undiagnosed symptoms such as emotional difficulties, fatigue, learning problems, and social problems that can last a lifetime.
In my experience, the medical community’s standard of care for certain classes of TBIs has not yet caught up with effective new treatments that are available. There are many excellent physicians who have been exposed to current research in “brain plasticity” (wherein parts of the brain can be trained to compensate for other, injured parts), especially those physicians working with sports and military head injuries. However, it is unfortunately true that many M.D.s, including leading neurologists—as well as putative leading rehabilitation institutions—are as of the time of this writing unwittingly out of date when it comes to accurately diagnosing and treating concussion. This is unspeakably sad for those who are needlessly suffering and believe they have nowhere to turn.
The later chapters of this book that cover the science behind my recovery may also be highly revealing for those who suspect that they suffer from some form of attention difficulty, such as ADD, or suspect that a family member does. In the process of my recovery I realized that many of the features of such attention difficulties significantly overlap with those manifesting as concussion symptoms. From the many anecdotes I’ve heard from my university students, and others, I think we should be highly suspicious that some of these attention difficulties are rooted in prior, sometimes even mild, head injuries. How many times have I heard, “Oh, yes—now that you ask, I did start having this trouble last year after I had that [car accident / skiing mishap / skateboard fall / soccer concussion]. . . .”
The small changes that can occur in one’s brain from even a quite forgettable bump on the head can masquerade in subtle ways such as personality oddities, trouble with multitasking, sleep disturbances, and even just growing old. Who would have thought to consider that slip on an icy doorstep five years ago as the culprit behind having a slight sense of being out of sync at unpredictable times, or having trouble managing appointments?
As a professor of artificial intelligence and cognitive science, I have shared some of the concepts covered in this book about how brains work with my classes, including the ideas behind several leading-edge cognitive restructuring, and neuro-optometric, treatments. It has been striking that I have never failed to have, in each such course, at least two students talk to me after class about their extreme interest in the material because of their own information-processing difficulties. This suggests to me that the kinds of brain difficulties experienced by concussives (as in, those who have suffered concussions)—albeit in much milder forms than my own—are far more widespread than we might traditionally suspect, especially among high-functioning, intelligent people who are very good at masking such problems.
One of the things concussives share is the feeling of having become an alien being. We still walk and talk and act as though we are part of the human race, but it doesn’t feel that way inside. Essential parts of our brains that convey what it means to be fully human have disappeared—vanished in that moment of impact when we tripped on the stairs, or crashed into an arena wall. Instead there is a strange feeling of nostalgia, a longing for who we used to be.
Normals—those who haven’t suffered from concussions—will take for granted the countless small operations their brains perform as they think and gracefully move their bodies through the day. But a concussive loses the ability to manage the staggering complexity of the systems that implement these operations, and as a result loses not only basic cognitive and motor functions, but also a larger sense of self-identity, and identity in relation to the world. This makes us odd beasts—a cross between what amputees may experience with phantom limb syndrome, and what hemispatial neglect patients have when they suddenly lose half of their world: On the one hand, with a phantom limb, amputees are constantly reminded of what they used to be, of being whole. On the other hand, neglect patients are missing part of themselves and their world, and while they feel a sense of loss, they can no longer even imagine what it is they are missing. For a long time I lived in such a dual-natured limbo.
This book captures my harrowing yet ultimately fascinating odyssey as a concussive. For almost a decade, and even while struggling mightily—sometimes just to get through a doorway, or down a flight of stairs—I was constantly observing, analyzing, and recording the events unfolding in my life, and the ways in which my damaged brain was trying to make sense of them. I took twelve hundred pages of notes, and through them I became the subject of my own long-range experiment in cognition—exploring the relationship between mind and body, and the inner mind and outer world. Along the way I learned a great deal about how the healthy human brain works as well—leaving me in awe of th...
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