The Best New Concussion Book on the Shelves

CaptureIn 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.

Unité 9: A Harsher Look than OITNB at Why it’s So Hard for Women to Start Over

Unite 9 photoA few nights ago, I watched the second-season finale of Unité 9 on Netflix—and I thought Orange is the New Black was good. This piece of French-Canadian TV brilliance sheds a whole new light on women fighting an uphill battle to start their lives over.

Like OITNB, Unité 9 is set in a prison called Lietteville outside of Montreal. As the show opens, Marie Lamontagne is being hauled off to prison after pleading guilty to trying to kill her father. When she arrives, she’s surprised to find most of the women (except those few in either solitary confinement or the maximum security wing) living in groups of six in cozy little bungalows. Each woman has a small daily allowance for food, but in Unit 9 they pool their resources to have nicer meals, complemented by vegetables grown in a communal garden. Unit 9 is clean, organized, and run like a family by the maternal Elise, who’s approaching the end of her 24-year sentence.

But as Marie begins her seven-year term, a new prison director is taking charge at Lietteville. There have been problems at this new-concept prison and Corrections Canada has appointed stern-faced, tight-laced M. Despins to set the situation straight. Thus, the show starts out by playing into conservative, law-and-order stereotypes of convicts living the easy life on the taxpayer’s dime. Criminals who wear their own clothing, earn money at prison jobs to buy personal comforts like television sets and music players, and even take weekly piano lessons? What kind of system is this for punishing people who have committed crimes against society? And not just people, but women?

As the series unfolds, it becomes apparent this system was working quite well, thank you—or was, until Despins came along. Women whose root crimes were being poor, uneducated, and often lifelong victims of emotional, physical, and sexual abuse were working through their problems and becoming equipped to rejoin society.

But as Despins implements his ideas of the way a prison should work, the thread holding the women of Unit 9 together begins to unravel . At the same time as we’re learning why each woman is really there, what demons many of them are fighting, Despins is busy throwing more of them into Solitary or Max, splitting supportive family groups apart, and tossing women who were beginning to heal in with sociopathic gang members.

Committed staff who have worked with female convicts for years become frustrated with the increasingly toxic environment and leave Lietteville. New wardens hired more for brawn than brains either brutalize their charges or become involved with them sexually. Smuggling and theft increase, internal intimidation and violence run rampant, and all of it gives Despins the excuse he needs to become even more controlling.

In this environment, women who have lived their lives by negotiating gendered double binds find themselves less and less able to do what is expected of them—take responsibility for their actions and prepare to start their lives over.

The script is, of course, laced with metaphors: The windows need no bars because the real prisons are in the women’s minds. The psychiatrist is legally blind but her insights are deep and true. Liette, the root of Lietteville, is both a short form of the romantic “Juliette” and a variant of the slang term “Le Tit,” which refers to a female girl with nice T&A.

Marie Lamontagne is a mountain of strength, having pleaded guilty to a crime she did not commit to protect her daughter, Léa Petite, from sexual abuse at the hands of the same father who molested Marie. Through all the verbal abuse and sermonizing Marie endures for failing to take responsibility for a crime she did not commit (while her father’s abuse of both herself and her daughter goes unpunished), she protects her child (who attacked her grandfather in self-defense) by keeping her secret.

The story itself is, of course, a metaphor. Just as the best speculative fiction takes the problems we find most intractable on Earth and places them in distant galaxies, where we might see them more objectively and find our way out of the double binds we’ve placed ourselves in, Unité 9 places a group of women in their own small, separate universe so that we might see the double binds that tie us all into a world of gendered rules more clearly.

While OITNB strives to do something similar (and succeeds, as Stacey May Fowles wrote a few weeks ago in the Globe and Mail), it does so with a lighter touch, and it’s partly the humour with which the real-life protagonist, Piper Kerman, looks at responsibility in her own and other women’s lives that makes OITNB so good.

Unité 9 takes a different route, and a much harsher look at all the same themes, and reveals more in black and white than orange why it can sometimes be so hard for women who would like nothing better than to start their lives over, to actually do so.