My guest today is Clark Elliott, professor at DePaul University 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: Welcome to OpEdNews, Clark. Please tell us why you wrote this book.
CE: Thank you, Joan. I was consistently told for almost a decade that my brain damage was permanent, that I would never recover, and that no one with my kind of damage ever got better. I was advised to learn to live with my symptoms. Then, in a last-gasp effort to hold on to my life before losing my job, my house, custodianship of my children and becoming a ward of the state, I got lucky: I chanced upon Donalee Markus and Deborah Zelinsky. Deborah told me, "I know what is wrong with you--and I know how to fix it." And she was right.
I had been given this great gift, I was one of the very few that ever got better. I was so very ready to close the door on that experience and move on. After all, I had already lost ten years of my life by the time I was fully recovered. But I thought, I've taken 1,200 pages of notes. I can articulate exactly what the experience of a serious concussion is like, and I also know why I got better--the science behind the brain plasticity miracle that restored my brain to health. How many others were stuck in the same waking nightmare?
So I wrote the book for these two reasons. First, to articulate, with clarity, what it is that concussives and their families may be going through: why they burn food in the kitchen, or have so much reluctance to make plans. Why one minute they seem fully functional, and the next minute they are unable to understand even the simplest directions. Second, to make clear at a reader's level the neurocognitive science behind my recovery, because I believe these techniques, based on the plastic nature of our brains, will be potentially useful for so many others.
Lastly, the book was also simply a celebration of the marvelous design of the human brain. The more we look the hundreds of small ways it can break down with concussion, the more we must be in awe of the staggering complexity and power of this mysterious organ.
JB: If I recall correctly from your book, initially, your concussion was not diagnosed. And once it was, no one offered you any hope, despite the horrific symptoms you suffered. Before we talk about what your daily life was like, why do you think your condition flew under the radar and then was basically left untreated? You went to reputable medical facilities after all, no?
CE: To their credit, the EMTs at the scene of the original crash were clear in their assessment that I had a concussion that should be checked out. Unfortunately, I couldn't make sense of what they were saying. I just couldn't get it--after all I seemed to look O.K., how could there be something wrong? So, I ignored their suggestion and went on to teach my evening class. But even at the time of the crash, weird things were already happening. For example, the police officer wanted my insurance card. I took a pile of six pieces of paper out of my glove box but I couldn't figure out how to select the insurance card from it and hand it to him. In the end, he got tired of waiting and took my license instead. And, of course, this strange inability to recognize that something has gone missing is one of the most insidious aspects of concussion: those parts of our psyches are just gone--so much so that we don't have even the machinery left to realize their absence.
I finally went to the emergency room three days later, after coming to understand that it was not normal for me to take six hours to figure out that I had my shoes on the wrong feet. I spent seven hours in the hospital, and the diagnosis was clear: severe concussion. Every subsequent visit to an M.D. or rehab center confirmed the same, based on what little evidence they could gather: that I had suffered a concussion.
But that is where it ended. Everyone was also clear about the next part as well: there is mostly no treatment other than what the body can do on its own over the course of the first two years. The damaged parts of my brain were gone for good. Sometimes, medicines like Prozac can help jump start the brain. Sometimes, balance therapy might help. But, mostly, no one ever gets better and I should develop strategies for living with my symptoms.
It wasn't until I saw Markus and Zelinsky all those years later that I was given the tests that were actually appropriate, and revealed what was wrong.
JB: Before you met Markus and Zelinsky, how did you function with these disabling symptoms, Clark? Can you paint a picture of what your daily life was like so our readers will have a better sense of what you were dealing with?
CE: Well, the short answer is, it was not easy. Life with brain damage is pretty much a challenge from the moment of waking until the moment of finally falling asleep at night. Then too, my sleep was changed, including the way I dreamed.
Like many concussives, I got through my days by being very crafty about taking on only what I could manage, conserving my scarce brain resources, and being intensely creative in the ways I solved the continual problems that arose.