Imagine a cold and snowy night, not unlike what we experience here in Ottawa. It’s late, it’s been a long day, and all you want to do is get home. But your brain is slowing down. As you make your way to your car, your body just …. stops …. moving. You have been walking the few short blocks to your car for an hour, so you are cold, and frostbite is a legitimate concern, but no matter how badly you want to get there, you are frozen and can’t move, not because you are literally frozen, but because your brain is used up and you just can’t make your body move despite your best effort. Without having lived through an experience like this, it’s tough to imagine how this could even be possible, but Clark Elliott describes it so well in the opening chapter of his newest book, The Ghost in my Brain: How Concussion Stole my Life and How the New Science of Brain Plasticity Helped Me Get It Back, that you almost feel like you’re there, like you’re living it right alongside him.
In starting with what it is like to experience concussion and the debilitating nature of his experiences, Elliott helps us to not only understand just how difficult it is to live through this kind of brain trauma, but also why finding an effective treatment is so imperative. His ability to describe the experience is remarkable and really makes the reader feel like they are living the experience. Since reading this book, I have somehow magically met others who have experienced or are experiencing debilitating concussions, and they too are facing the same challenges that he did: doctors that don’t understand or think they are fine based on a limited subset of testing, treatments that consist of nothing more than just rest, which while helpful, does not fix the permanent damage, and a world that doesn’t understand what a concussion is like and is not equipped to accommodate it. Perhaps most troubling is the experience of hopelessness and helplessness as a result of no longer being able to do what you could do before. That feeling would drive just about anyone crazy. Elliott, through sharing his many experiences of trying to find help and not getting any, helps the reader to really feel that sense of frustration, that feeling like you want something so badly and you know there has to be a way forward and yet nobody can help, that sense that you can do more and be more if only your brain would just do what you’re trying to tell it to do. You’re left wanting a solution.
In the middle section of the book, Elliott changes pace and spends some time noting all of the things he discovers about the brain as the result of the damage that happened to his. He asks brilliant questions like, “Why was it that one day I couldn’t walk across a parking lot, but the next I could run a marathon” (49)? It’s a great question! The disconnect would be very baffling to anyone. Elliott makes many conclusions about the brain and about the ways in which people suffering from a concussion adapt to and work around their condition.
When it comes to concussions, Elliott notes that there seems to be three different power levels in the brain:
Set A – the working set – is immediately available, and also recharges rapidly within a few hours. Set B – the first level of backup batteries – can be accessed if Set A is exhausted, but takes longer to recharge, possibly up to several days. Set C – the deepest level of backup batteries – can be used as a last resort at times of extreme demand when Set B is exhausted. But caution must be exercised – Set C charges very slowly, over the course of up to two weeks. (57-58)
I had never really thought of that before, but in looking at my own abilities, I do see the three sets in action. They all have longer action life and shorter recharging times than they would with a concussion, but they are present. This is merely one of many interesting connections in the brain that Elliott notes, but I won’t spoil the fun by giving them all away.
Finally, Elliott concludes the book with his treatment. As a former hockey player, I have seen my fair share of concussions, and generally given thanks that I haven’t had to experience one myself. Head injuries are not something to be messed around with. But in all that time, I never saw anybody be treated for it. You get a concussion, you rest, and when the headache goes away, you go right back to practice. I have since learned about the long-term effects of concussions, especially when it comes to Chronic Traumatic Encephalopathy (CTE). But again, the research is still just figuring the disease out, and so far, it can only be diagnosed in an autopsy. There is little knowledge of how it works, how to avoid it (beyond not playing contact sports), and how to mitigate its effects. Nobody ever talks about a legitimate treatment plan for concussions. Until now.
Elliott’s treatment comprised of working with two different doctors: Donalee Markus, a neuroscientist specializing in cognitive restructuring, and Deborah Zelinsky, an optometrist with skills in neuro-optometric rehabilitation. With Donalee Markus, Elliott had his first real testing that led to results, followed by treatment involving a series of puzzles. With Deborah Zelinsky, he went through a series of tests, after which he was prescribed a set of glasses with a very
specific goal in mind. He went through six phases of this over several years, which the book outlines in great detail. In fact, the book spends far more time on the Zelinsky side of the treatment, and he speaks fondly of his “magic glasses.” Together the puzzles and the glasses combine to change Elliott’s life.
While Elliott focuses more on his work with Zelinsky, he notes something about Donalee Markus that really stuck out to me:
In those first two hours we spent working together, I found Donalee to be really engaging – smart, organized, and compassionate. Her knowledge of clinically applied neurology was vast. I could tell that she “got it” right from the start. And critically important to understanding how she works is that she pays close attention to the people with whom she works. She is watching, and thinking, and asking, and listening – teasing out small clues to what is going on in the brain. (208)
The italics are Elliott’s, but they really highlight the important part. Here is a doctor who is one of the best in the world, and yet while her knowledge is important, her attention to her patients, her compassion and empathy and need to understand the people she is working with, these are the qualities that make her outstanding at what she does. These qualities are qualities that we can all strive to develop within us. We may not all be able to treat concussions with neuroscience, but we can all pay close attention to the people with whom we interact on a daily basis, and we too can use that attention to detail in order to make a difference.
Overall, the book is a worthwhile read, especially for those with an interest in concussions and/or any of the brain sciences. That said, this is not a scientific book. There are not research findings beyond just one case study. More than anything, this book leads a person to ask a lot of questions. How exactly do the puzzles help? How did she know which puzzles to give him and how to sequence them? How did earlier research lead to this result? How many others have been treated in a similar way? Are there treatment options available to us here in Canada? Does treatment of concussion in this way help prevent CTE? Could this be applied to athletes who experience milder concussions more frequently or does this only work on extreme cases such as Elliott’s? How do the glasses work? Why did the glasses help, even when he was sleeping? Why/how did the glasses affect the way in which Elliott heard music? The questions go on and on. The Ghost in my Brain is an introduction to an area of research that I never knew existed, one worth exploration and more study given the prevalence of brain injuries and their disastrous consequences.