In 1999, Clark Elliott, a professor of artificial intelligence at DePaul University in Chicago, was in a “minor” rear-ender. With no external injuries, he initially thought he’d escaped unscathed. It took some time for him to realize how wrong he was.
His symptoms, including spatial disorientation, dizziness and nausea, uncoordinated movements, balance issues, short-term memory issues, and much more, disabled him for the next eight years. But nothing about his injury was straightforward, as is often the case for concussion sufferers.
Elliott’s book, 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, 2015), tells a remarkable story, one that should give concussion sufferers everywhere hope for recovery, even years after their injuries.
According to Parachute Canada, a nonprofit organization devoted to injury prevention, nearly 3,000 people in Canada reported to a hospital emergency department with a concussion in the fiscal year 2010–2011. However, as most concussions go unreported, that grossly underestimates the number that occur every year. In the US, the CDI estimates 1.7 million people sustain a traumatic brain injury (TBI) annually, about 75% of which are “mild” TBI, also known as concussions.
The CDI further estimates that direct and indirect medical costs of TBI, such as lost productivity, totaled an estimated $60 billion in the US in 2000. (I estimated the income I’d lost from my 2003 concussion when my lawsuit went to mediation in 2007; it was substantial, and has grown every year since then.)
Elliott describes himself as fortunate in having an accommodating employer, so for him, at least initially, financial loss wasn’t the biggest concern, as it is for many people. Good thing; his symptoms, which he describes eloquently based on copious notes written throughout his ordeal and recovery with a scientist’s eye for detail, gave him more than enough to deal with.
The first chapter opens with one such description:
Just before nine o’clock, on a frigid night in early 2002, I completed my three-hour lecture on artificial intelligence at DePaul University’s downtown campus. I was exhausted, and ready to head for home, but it took me another two hours to make my way to the sixth floor of the building across the street, then crawl down the hall to my office and there rest in the dark and the quiet until I was able to attempt my journey north to Evanston. Finally, at eleven, I left the building again and headed off through the brutal wind, intending to walk the five blocks to my car, parked near the lake on Columbus Drive.
He goes on to write that his progress toward his car was slowed by snow flurries, which disoriented him in a city with which he was very familiar. He felt the onset of a visual distortion similar to the “dolly zoom effect” used by cinematographers. It took him an hour to reach his car, and another half hour to overcome the disorientation enough to unlock the door and climb in.
He then sat with the car idling until 2 am, resting enough to drive home safely. But once in his driveway, it took him another hour to get to his front door, though it was only 40 feet away. By the time he’d rested enough to get to sleep without getting sick, it was over seven hours since his class had ended.
It sounds too bizarre to be true, but I know from experience how easy it is for others to think concussion sufferers are exaggerating. On the outside, they may look and act fine, while on the inside, they are battling a crippling headache, overwhelmed with confusion, or trying to keep their balance in a room that won’t stop spinning.
The Ghost in My Brain conveys two important messages. First, the lasting impacts of concussion are, for some people, long and torturous. (I’ve read many sad concussion stories while collecting research for my book, but this recent one from the Toronto Star is particularly tragic.)
And second, even years after the injury, there is hope for recovery, as Elliott discovered eight years after his concussion when, on the verge of giving up his career, his home, and custody of his children, he made a last-ditch attempt to find someone who could help him.
He found a clinical psychologist named Donalee Markus who had worked with NASA and developed visual exercises designed to create new neural pathways to replace damaged ones. In her foreword to Elliott’s book, she writes:
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.
“The plasticity of the human brain is both its power and its weakness,” she writes. Although life-sustaining functions are hard-wired, cognitive functions, like thinking, hoping, planning, and controlling behaviour, are not. However, when damage occurs to these parts, it is usually diffuse and microscopic, so it is not visible through current imaging technologies and therefore difficult to diagnose, to treat—even to believe.
Because of her unique skill set and persistence, Markus believed Elliott and was able to diagnose and treat him (and many others). She did not do it alone, however. As it was clear visual perception was a significant aspect of Elliott’s dysfunction, she referred him to Deborah Zelinsky, a neuro-optometrist and innovator in the use of visual assessments to diagnose brain trauma, and treat it with a series of therapeutic eyeglasses.
(I haven’t interviewed Zelinsky, but I suspect the glasses she prescribes are similar to those Hilary Clinton was seen wearing after her concussion in 2012, but more advanced than the single corrective, rather than therapeutic, pair I was prescribed in 2004.)
The Ghost in My Brain is a fascinating read, though there are places where it bogs down, notably when Elliott includes long segments from his detailed notes. (This makes sense; he was not writing these for a reading audience but for his own edification as a scientist.) Yet those details were vital to the treatment that finally got his life back on track, and remain important to our growing understanding of what concussion is and how millions of people might benefit from similar treatment.
Perhaps my biggest frustration after reading the book (twice, to absorb as much as possible) is realizing how few people have access to such treatment. I consider myself lucky to have stumbled upon the only neuro-optometrist in British Columbia, who is now retired. There are some other practitioners in Canada and the US who offer similar services, but they are few, far between, and hard to find.
Moreover, in most cases, patients have to be financially equipped to travel for treatment and pay out of pocket for their services, which are unlikely to be covered by most medical plans. That means many of the “concussives” Elliott refers to as the “walking wounded” have little recourse but to accept disability for the rest of their lives—and the rest of us have little choice but to accept the cost of everything we lose when people we care about can no longer contribute fully to our relationships with them, or to society.