The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back

Synopsis of the Book: The “Ghost in My Brain” is a fascinating and passionate book about how a concussion can wreck a life – and how avant-garde treatments like visual puzzles and special eyeglasses can quickly rewire the brain into recovery. Author Clark Elliott is a computer science professor at DePaul University in Chicago, Illinois. The book documents eight years of his life, and describes: • The automobile accident that gave him a concussion • The eight years of hell he endured as he struggled to raise a family and keep his university position in spite of concussion-impaired abilities • His rapid recovery (within one year!) after a combined treatment of context-free puzzles developed by psychologist Dr. Donalee Markus, and special therapeutic glasses designed by neuro-optometrist Dr. Deborah Zelinsky Throughout all this, Clark kept a detailed diary of his inner thoughts and personal experiences, and he used this 1200 page record to write the book. One of the book’s key narrative strengths is that he thoroughly describes the tragic ways the concussion sapped his energy and altered his normal brain function, and the ingenious coping strategies he used to appear “normal” to colleagues, friends, and family. Examples of his concussion-induced impairments include: • Taking minutes to recall important information – like the names of his children. • Getting “lost” in parking lots and streets he used every day. • Developing physical pain, nausea, loss of balance, and even seizures when he encountered certain sounds or visual patterns. • When listening to academic lectures, he only had 25 minutes of critical thinking time before he became mentally and physically non-functional. While enduring this for eight years, Clark consulted with the best traditional doctors in the field of brain injury and recovery – who said that he would never get any better, and that he should just learn to live with his symptoms. However, through a chance encounter he was introduced to Dr. Donalee Markus, and through her to neuro-optometrist Dr. Deborah Zelinsky. Working together – Dr. Markus with context free visual puzzles tuned to Clark’s concussion symptoms, and Dr. Zelinsky with glasses that altered the direction and frequency of light hitting his retina – Clark made rapid progress. Within two weeks “the fog lifted”, and he regained a significant portion of his cognitive abilities, and after six months he was largely recovered. What I liked: For me, the most emotionally affecting part of this book was Clark’s description of his “inner world” as a concussion patient, and the many overt and subtle ways that brain damage can impair one’s ability to think clearly and effectively, and to correctly process the “outside” world. Clark describes it as becoming an alien being that walks and talks and acts though he was part of the human race, but that it doesn’t feel that way inside. In addition, I was touched by Clark’s descriptions of how his concussion impaired personal talents that he loved and cherished – such as spatial visualization and reasoning. Having the concussion take away energy is bad enough – but losing the abilities that give one’s life meaning is even more tragic. We have all heard about football players who had to retire due to severe concussions – but how often do we hear about painters abandoning their art because a concussion destroyed their ability to see the world through an artist’s eye? While the book was emotionally inspiring, as a technologist I was also fascinated by the idea that one can “hack” the brain – change its function - through visual stimuli (puzzles) and special eyeglasses. Drs. Markus and Zelinsky altered Clark’s brain function to alleviate his concussion symptoms, but I wonder whether these same techniques can be used to treat other conditions – or to enhance already-existing abilities and talents. For example, Clark is a trained musician and vinyl-listening audiophile, and in the book describes how his therapeutic glasses had the unintended side effect of greatly improving his ability to perceive and visualize classical music. Conclusions: If you have a loved one who has suffered a concussion, I urge you to read this book. It will help you understand and appreciate the challenges they face both externally and internally, and it will also introduce you to new treatments that can be far more effective than traditional "wait and rest" protocols. In addition, technologists and those interested in neural science and brain plasticity should read this book. Clark’s detailed descriptions of his internal processing challenges illustrate the complexity of perception, and the idea of “hacking” (re-wiring) the brain via puzzles and special eyeglasses is a revolutionary idea. The author devotes a detailed chapter to each of these therapies and how they were applied to his condition, and these sections provide a very readable overview of each method’s theory and practice.

This book has been such a blessing to me and my daughter! She had a "mild concussion" 4 years ago. She immediately had symptoms. Within a few months, her life was changed. Symptomatic 24/7, had to quit sports(didn't get concussion during sports), 24/7 head pain, vision was crazy, pupils enlarged, ringing in ears, pressure to one side of body, constant dizziness and feeling of falling even when sitting, light sensitive, noise sensitive, problems processing info, confusion, mixing up words, nausea, feeling of being full and not wanting to eat, and the list goes on and on. She was 15 at the time and has struggled to make it through school and life. She hasn't let it define her though. She is an "A" student , dual enrolled, AP class, honors class, and president of the HOSA club. She will be off to college soon. We have fought the long 4 year battle of denial in the medical field. We have seen over 20 doctors and specialist, she has been on way too many strong drugs prescribed by each of them, been through all kinds of therapy and not one positive result from any of it. Doctors have asked us not to come back because I don't agree with their diagnosis, which was always hereditary migraines. We don't even have a history in the family. We have been told it is totally unrelated to the concussion and she is just depressed. She even told them she wasn't depressed but frustrated because she couldn't find a doctor who wants to help her. We have now met two very accepting and knowledgeable doctors. They specialize in neuro optometry and neuro psychology. They have found numerous visual and audible issue caused by damage to the brain during the concussion. They have prescribed special glasses, vision therapy and neurofeed back therapy. All will retrain the brain to work properly. We are already seeing positive results! She had a QEEG which maps the brain waves and we see the under and over active areas, we can even see the point of initial concussion and point of residual concussion on the brain mapping. We feel like we have hope. This book describes my daughter's life for the last 4 years and it's sad but refreshing to know that someone else out there knows that Post Concussion Syndrome is real and life changing. If you know someone who has been concussed or you live with a concussive, please read this book and share with them!

I, like Clark Elliott, suffered a (supposedly minor) concussion that, more than a decade later, continues to profoundly affect my life. I can't hold regular employment. My bouts of brain fog and fatigue rule every minute of my day, every day. I have had to simplify my life, strip it down to spartan basics just to get through my day without being overwhelmed. Given enough time I can perform some complex tasks, such as writing novels and painting, but I have difficulty with speech, simple decisions, daily routines and driving. The negative reviews posted here deride the book because they feel the author's experience is not credible. In my own experience, no one in the emergency room said a thing about a concussion, they were more worried about my neck. I felt fine for 24 hours after my accident (hit by a car while on my bike, fortunately wearing a helmet) then I could not get up for a week. It was my chiropractor who suggested I may suffer from post-concussive syndrome. My neurologiest never suggested an MRI, probably because this type of injury consists of microscopic tears that don't show up on an MRI, and the tests are a waste of money. You either get better, or you are one of the 2% of people with this type of injury who don't. While the field may be changing, in my situation, doctors prescribed anti-depressants and Adderall. Beyond that, they were not interested in any brain injury patient who knew which end of the toothbrush the paste went on. Counseling helps me keep my life on track and provides moral support, but there are really no options for folks like me and Elliot. We fall through the cracks. I belong to a brain injury group consisting of folks like me, who had seemingly minor concussions that ruined their lives. It may all be in our heads, but it is physiological, not psychological. I do not know Mr. Elliott, but I can assure you that the problems he reports are true of many, including the failure of people around him to comprehend his disability, and the failure of the medical community to provide adequate treatment. I have made strides with diet and herbs (in addition to my medications), but I am still about 30%. I am excited by the prospect of new treatment and intend to investigate this for myself. Still, if the treatment that helped Elliott does not help me, that does not negate its possibilities. Even with widely-accepted diseases/syndromes, different people respond to different treatments. If they did not, people would go to mechanics, not doctors.

If, like me, you want to get to the part about making the TBI peson's life better, read the first 100 pages (which are pretty labor-intensive), skim the second 100 pages (I actually skipped 60 of those pages), and slow down around p 192. Take a lot of notes from there on. If like me you don't want to become a neurosurgeon, get in the habit of skipping over the extreme detail provided about retinae etc etc. The author is the kind of guy who does it the hard way and takes you with him, climbing a tree with chainsaw in one hand even though his TBI made it difficult to balance well enough to go up and down stairs. In numerous situations, he said he "had" to do this or that thing, so many people depended on him, yada yada. Some of his heroing situations could have been avoided. He's a very brainy, very intense kind of guy who creates drama for himself and maybe could have used a co-writer or an editor. Very smart, but he kind of works to go over your head. But ya gotta hand it to him, the information is useful, and his recovery, such a long time after his injury, is proof that Norman Droidge was right about the brain's plasticity. I hope our situation works out halfway as well as his did.

Excellent book for those suffering from TBI/ABI. Author is a professor in Artificial Intelligence and so he not only describes brain process very in-depth, he organizes his thoughts well and with relatable descriptions. In other words, he put into writing what I was experiencing inside my head better than I could, and that validation for me was HUGE. Like the author, I am getting passed around to doctors hoping to get help but no doctor has yet to give me a definitive diagnosis or help me design a treatment plan for recovery. No doctor had spoken about acceptance or understanding limitations. I could completely relate to many of the authors own experiences with the medical community, some of which had me in quiet tears as I read because similar things happened to me. I am grateful to have found this book as it has helped me tremendously in understanding what is going on in my brain. His brain injury was way more serious than my own, which also gave me valuable perspective. He is super nerdy (which I totally dig as a former Researcher) but at times I find myself partly amazed but also confused at his ability to work through small and complex thought processes that were not functioning well post-concussion. In some passages it’s like he is writing about brain process much like a computer process, which makes sense given his field of expertise. I have not finished yet but I expect to be done soon. I cherish the tidbits of wisdom and descriptions the author uses so I just want to keep on reading.

This is an incredible book that is mandatory reading for anyone that has a concussion, or has had a child with either a concussion or an actual or suspected attention diagnosis, as well as all doctors, pediatricians, and all types of eye doctors: ophthalmologist, optometrists and opticians. I have been buying it in bulk and handing it out to all my family doctors. The importance of the eye-brain connections in not fully understood by most doctors, who tend to not go out of their specialization area and do not treat the patients systems as a whole, delaying and sometimes never fixing the problems a patient might have after a brain injury or concussion. The understanding gained from reading this book and it's thorough descriptions of the issues that can be caused by brain injuries, and the relatively simple ways to correct them by focusing on the brain-eye connection, is invaluable, and simple to put into practice. One thing that is not mentioned in this book, but is mentioned in another book 'Fixing my Gaze', by Susan R. Barry, is the importance of seeking out a COVD certified optometrist - most eye doctors are not focused on identifying eye-brain problems. HIGHLY, HIGHLY RECOMMENDED, POSSIBLY THE MOST IMPORTANT BOOK OF 2015.

Mr. Elliott's book is a must read for anyone who has experienced or knows anyone dealing with traumatic brain injury/concussion. He eloquently describes and actually puts into words for me things I have gone through for years but have not been able to explain to anybody or get anyone to understand, besides Dr. Zelinsky and my neurologist, who both took me several years to find after my car crash. Although our experiences aren't exactly alike, they are so much in common, I feel I have found a kindred spirit in Mr. Elliott. He is someone who truly understands and can "see" what is happening inside my head that is mostly invisible to the rest of the world, except in our odd bits of behavior. memory lapses, and speech patterns. Dr. Zelinsky is a remarkable, energetic, fascinating, dedicated professional and although I cant speak her "language" the Mr. Elliott seems to, I know I cant go a day without her glasses either. I mean, 5 minutes. The very ironically sad thing is, as excited as I was to read Mr. Elliott's book, my TBI prevented me from remembering all the specific wonderful things he wrote that I wanted to remember so I could repeat them to people. Still, it was worth the struggle it was for me to read a book just to find out somebody else really "gets it"--and got through it.

This book reminded me of Jill Bolte-Taylor's "My Stroke of Insight", in being a scientist's personal account of brain trauma. Dr. Bolte-Taylor is a neuroscientist, and Dr. Elliot is a researcher in artificial intelligence. Most of the book is a description of the problems a major concussion brought on over an eight-year period, with several specific anecdotes of episodes that caused trouble and could even have cost him his life. Toward the end he describes how he found help from two doctors in his area. Like Dr. Bolte-Taylor's book, the recovery portion is unfortunately quite short, and doesn't offer any recommendations for people who aren't in the Chicago area to find help locally. While this book is his story and not a general review of concussion, it would have been nice to see a mention of a referral network or the like.

I'm very pleased with the book which came in only one day. Thankyou

Ein spannender und beklemmender Bericht eines Hirnverletzten, der von der Medizin völlig im Stich gelassen wird. Man kann das Buch kaum weglegen. Nach 8 Jahren unsagbaren Leidens entdeckt er zwei Ärzte, die sein Leben verändern und ihn heilen. Erstaunlich und hoffnungsvoll. In diesem Buch gibt es längere Erörterungen zur Funktion des Hirns und der Verarbeitung von Informationen, die ich sehr interessant fand, die eine weniger Interessierte Person vielleicht als etwas zu ausführlich empfinden könnte. Ein absolutes «must-read» für alle Menschen, die eine Gehirnerschütterung oder Hirnverletzung erlitten haben, oder so jemanden in ihrem Bekanntenkreis oder ihrer Familie haben! Brennend interessant für alle, die sich für Hirnforschung interessieren.

This is an amazing story and also quite scary. Scary from a number points of view, 1. How easy it can be to suffer T.B.I. and 2. how such an injury can have devastating long term effects. 3 The really scary thing in this story is the fact that Clark had the persistence and determination, not to mention the background education to persist in looking for answers to explain his condition and ultimately find a cure, or the people with the cure. This book highlights the amazing work carried out by Donalee Markus and Deborah Zelinsky and their fantastic knowledge and understanding in their field of expertise, it also highlights the lack of knowledge and even, in my view, lack of interest of the personnel in A&E departments and M.D. practioners when it comes to illness and unusual conditions being presented.

Absolutely incredible book. I have FND and I could relate to a lot of the experiences Dr. Elliott has had.

Well written and explained. A must read