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July 5, 2015

Prof. Recovers From Debilitating Concussion 10 Years Later [Part 2]

By Joan Brunwasser

the bulk of this phenomenal transition back to being a real human being again took place over the course of the first three weeks of my treatment. The brain is a sublime device, well able to reconfigure itself if we can sometimes just jump start it in the right direction. At the end of that first month, I was about 70% restored, and after six months with the puzzles and a couple of years with the glasses,I was fully recovered.

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Clark Elliott
Clark Elliott
(Image by Paul Elliott)
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Interview with Clark Elliott, author of The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back

This is part two of my interview with Clark Elliott, who suffered a debilitating concussion and defied medical predictions by recovering fully ten years later. (Part one)

Welcome back for the conclusion of my interview with Clark Elliott, DePaul professor and author of The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get it Back [Viking Press, June, 2015].

JB: Clark, you were able to recover because you ran into two exceptional women, Donalee Markus and Deborah Zelinsky. Can you tell us how that came about and in what ways they were able to help you get your life back?

CE: I was at the point where my life was going to completely unravel. I read a marvelous book by Norman Doidge, M.D., called The Brain that Changes Itself, and as a result began one last search for help using the term "brain plasticity." I was lucky and chanced upon Donalee Markus, Ph.D. a cognitive restructuring specialist, who also sent me immediately to her colleague, Deborah Zelinsky, an optometrist who emphasizes neurodevelopmental rehabilitation techniques in her practice.

In Dr. Zelinsky's office, over the course of two hours, I went through exhaustive neuro-optometric testing. The result: Dr. Z knew what was wrong with me, and she knew how to fix it. I was stunned. Until Donalee, who had a plan about how to proceed, no one had ever even called me back-- there was nothing they could do. Until Dr. Zelinsky, no one even came close to the having a clue about how to fix me. But she was right: she and Donalee DID know how to set my brain back in order.

Dr. Zelinsky gave me a special prescription for eyeglasses that angled the light to different parts of my retinas, and in this way found healthy pathways through which the incoming retinal signals could travel. She routed the signals away from the damaged parts of my brain. In this way, she created something we might metaphorically think of as a dirt road through this healthy brain tissue. Dr. Markus--Donalee--gave me long sets of paper and pencil puzzle exercises that started quite simply, but built up to very sophisticated problems that exercised these newly awakened parts of my brain to teach me how use them to be human once again: how to feel and think and see relationships in the world. She turned the dirt road into a superhighway once again, that allowed me to think like a professor once more.

The part where truth is in this case more marvelous than fiction is that the bulk of this phenomenal transition back to being a real human being again took place over the course of the first three weeks of my treatment. The brain is a sublime device, well able to reconfigure itself if we can sometimes just jump start it in the right direction. At the end of that first month, I was about 70 percent restored, and after six months with the puzzles and a couple of years with the glasses, I was fully recovered in all ways.

cover art, design by Spencer Kimble
cover art, design by Spencer Kimble
(Image by Viking Press, Penguin Random House)
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JB: Your recovery must have seemed like a miracle, after all those years and all those medical nay-sayers. At what point did you decide to write the book and how did that go? You mentioned your copious notes. But I don't have to tell you that there's a huge difference between pages of notes and a completed, coherent manuscript.

CE: Yes, it's true that for many years I was told I would never recover, but I took the notes of my experience anyway. The experience was so peculiar in so many ways, and gave me an unusual view of how the brain and body operate together, and also how they operate in the world. Because the "meta-cognitive voice" in my head was still observing everything in real time, even when my cognition and sensory appraisals were running in slow motion, I was able to see many details of how we think, and how parts of our cognition relate to other parts, in ways that were revealing. So I guess it was just my professor's curiosity, and my decades-long habit of taking notes on anything relevant to my AI work that prompted me to capture the details of my experience.

It was not always easy. I wrote when I could and where I could, and trusted that as long as the details were accurate and I had the dates and times, I'd be able to reconstruct the narrative later if I wanted to. Some of the time that I was writing these notes--especially in the early months--I could not read. I stuffed notes files in any directory available on any computer I had at hand because I was incapable of any sort of organizational tasks. I had envelopes with scraps of paper stuffed in them all over the house, and in my office.

I knew I could write because I had already authored what turned out to be a 400,000 word novel on a challenge from my daughter to have us take part in National Novel Writing Month (NanoWriMo) together. And" I WAS THE ONE WHO GOT BETTER. So I felt it was an obligation to share both the details of the experience, exactly as they occurred, and also the details of my surprising recovery and some of the science behind why I got better after all that time. I thought there was a chance my story could make a difference for others, and for the scientific record. I am getting mail from all over the world now on both counts, so my intuition turned out to be correct.

I sorted the hundreds of vignettes into electronic piles. I then made hundreds of passes through the collected pieces of the story, combining, rewriting (for clarity only), sorting. Approaching the task like a true computer scientist, I created a complex indexing scheme using cognitive category, narrative sequence and thematic importance, among other keys, so that each of the passages had a comprehensive set of links to numerous other passages at the top. Then I began work on the manuscript as an actual book, developing the arc of how to combine the story with the science.

I was slowed at times because, to be honest, there were episodes that were extremely difficult for me to revisit--episodes of how people took advantage of my weakness during this period, and which I did not include in the book itself. I really was often quite helpless. When faced with the horror of the carefully recorded details of some of these events, it was emotionally just too difficult for me to work.

As the book was forming I met my friend the writer, Pam Janis. She read parts of the rough manuscript and strongly encouraged me to turn it into a professional effort. With Pam's guidance and unfailing support, and with input from her colleague Leslie Breed we prepared a book proposal for the agent Howard Yoon. Howard rewrote parts of the proposal with me, and Viking/Penguin--which has has been fabulously supportive--took over from there, giving me the flexibility to develop the manuscript according to the vision I already had in my head.

JB: Well, you made it. The book is finished and now out. I just returned from Boston where I saw it displayed prominently at the Harvard Coop bookstore. Will you be involved in much promoting the book through tours and appearances?

Clark's book's on prestigious 'New Arrivals' table at Harvard Coop Bookstore: location, Location, LOCATION!
Clark's book's on prestigious 'New Arrivals' table at Harvard Coop Bookstore: location, Location, LOCATION!
(Image by Joan Brunwasser)
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CE: Yes, I will. I've had forty requests for interviews so far, and more are coming in all the time. The book is a number one new release at Amazon in neuroscience, and was even number two in health for a while. The reason: brain injury is a quiet epidemic that has touched so very many lives. For the town-hall appearances, we plan for twenty minutes of questions, and have each time invariably gotten chased from the hall after an hour and a half. For many, these are emotional events. Acknowledgment of the mysterious, puzzling and sometimes devastating symptoms of brain injury is cathartic in itself--I believe this is the first book to treat them in such depth--and the end of my particularly story, where I recover based on a little known tradition of science is of great interest to those who have essentially been told there is nothing that can be done for them. Email and personal communications to me are passionate, and are coming from around the world saying, in essence, "Thank you for telling my story through your words."

As I am able, I will continue to do what I can. The book will do no good if it is not read. My heart goes out to so many still challenged by just getting through the day. I can still feel myself walking around in their shoes. Let's hope that the techniques used to help me will be of use to some of them as well.

I also passionately hope that some of our finest young minds, now in school, will see this as an opportunity to make a real difference in the world, and pick up where Markus and Zelinsky, and others like them have left off.

Lastly, at some point, I believe the book will get picked up in the sports-talk circles, because there is so much in the book relevant to our athletes, both student and professional.

Ultimately I am not important, and my story is not important. What matters are the details of this strange experience of insult to the body and psyche and the introduction to the science of brain plasticity that has so much potential for healing.

JB: I strongly beg to disagree. Your perseverance and willingness to document and then publicize your saga can make a world of difference in opening doors for many who have all but given up. Good luck to you. It's been a fascinating journey, Clark. Thanks for sharing it with me and our readers.

Signing copies of 'The Ghost in My Brain'
Signing copies of 'The Ghost in My Brain'
(Image by DePaul University/Carol Hughes)
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***

Part one of this interview

Clark's website

brief bio: Clark Elliott, PhD, has been a professor of Artificial Intelligence at DePaul University for twenty-seven years. He holds three teaching certificates for music, the B.M., M.M. (music), and M.S. (computer science) degrees, and a Ph.D. from Northwestern University's Institute for the Learning Sciences with an emphasis on computer simulations of human emotion. He lives with his wife and daughter in Evanston, Illinois. He has raised four other children, studies Tai Chi and music every day, and continues as a casual marathon runner.

The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get it Back [Viking, June, 2015]

Video of 12-minute talk Clark gave: Cognitive Rehabilitation after TBI via Retinal Stimulation: A 12-year self-reporting case study

Dr. Deborah Zelinsky, the Mind-Eye Connection website

Dr. Donalee Markus, Designs for Strong Minds: Learning How to Learn website

The Women Who Face More Traumatic Brain Injury Than NFL Players Huffington Post 6/2/2015



Submitters Website: http://www.opednews.com/author/author79.html

Submitters Bio:

Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of transparency and the ability to accurately check and authenticate the vote cast, these systems can alter election results and therefore are simply antithetical to democratic principles and functioning.


Since the pivotal 2004 Presidential election, Joan has come to see the connection between a broken election system, a dysfunctional, corporate media and a total lack of campaign finance reform. This has led her to enlarge the parameters of her writing to include interviews with whistle-blowers and articulate others who give a view quite different from that presented by the mainstream media. She also turns the spotlight on activists and ordinary folks who are striving to make a difference, to clean up and improve their corner of the world. By focusing on these intrepid individuals, she gives hope and inspiration to those who might otherwise be turned off and alienated. She also interviews people in the arts in all their variations - authors, journalists, filmmakers, actors, playwrights, and artists. Why? The bottom line: without art and inspiration, we lose one of the best parts of ourselves. And we're all in this together. If Joan can keep even one of her fellow citizens going another day, she considers her job well done.

When Joan hit one million page views, OEN Managing Editor, Meryl Ann Butler interviewed her, turning interviewer briefly into interviewee. Read the interview here.


While the news is often quite depressing, Joan nevertheless strives to maintain her mantra: "Grab life now in an exuberant embrace!"

Joan has been Election Integrity Editor for OpEdNews since December, 2005. Her articles also appear at Huffington Post, RepublicMedia.TV and Scoop.co.nz.

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