[Edited] Since posting this, the book has been launched. I thought I had the book trailer inserted here, but the link wasn’t working. However, you can see it yourself at http://www.nikikrauss.com/?page_id=1096.
I’d also like to add (and I hope it’s not unforgivably immodest) that the author just sent me a copy of her book with a lovely inscription and this paragraph in the acknowledgements:
The editor’s red pen can feel a dagger to a writer. Not so with Lynne Melcombe, who edited my very rough first draft. Your constructive criticism and carefully crafted corrections helped me to find my voice as a writer. You were not only editor but also teacher. Thank you for your gentle and respectful awareness of how fragile I often was. You have a gift. Thank you for sharing it with me.
Thank you, Niki, for allowing me the privilege of editing your very moving memoir (not to mention touching my heart and making my day). I hope it sells well and, above all, I hope you keep writing. I don’t doubt for a moment you have many more things to say.
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.
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.
One of the best things about starting over so many years after my injury has been reading. I’ve been a voracious reader for most of my life. During my years as a freelance journalist, I’d get up at 6 AM, or earlier, make a pot of coffee, and read for hours. I subscribed to 12 or 13 magazines and I’d power through every issue, rarely skipping an article, until I felt guilty about my children watching too TV (even if it was Sesame Street).
When I shifted to communications work, I had less time for magazines, but I scoured newspapers daily for stories related to my clients’ mandates so I could ghost write letters to the editor and op/eds, and if I happened to read a lot more than necessary, that was fine. I love good literary fiction, and although I was too busy to read more than a few novels a year, I always took time to read a few on the annual camping trip or over the Christmas break.
After my injury, though, reading for pleasure completely became a thing of the past. Even now, 12 years after the concussion, nothing triggers my headache faster than putting on my reading glasses, especially if I’m reading from the computer screen.
Very quickly after the accident, with no idea what a long-lasting choice this would be, my husband and I decided I had to focus the few good reading hours I had every week day—the few hours before The Headache became intolerable—on billable work only. I divided the rest of my time between health care appointments and rest.
For months, I was only able to tolerate reading for a few hours a day. For years, even when that improved, I still felt I couldn’t afford the time and pain to read for pleasure.
Before my injury, nothing had ever been higher on my Christmas wish list than books. Afterward, there was no point in making a wish list of books because they just gathered dust. Reading was, without a doubt, one of the many losses that steepened my descent into depression. Not only could I not escape into a different world in a way that’s not possible with TV or DVDs, I could barely keep up enough with events around the globe to carry on a conversation about anything larger than my increasingly confined middle-class suburban life.
When I began the MFA program, I worried about being able to manage the reading (and my lack of awareness of what was going on in the world at large, never mind the literary world, embarrassed me). But once I started reading again, it was like getting together with an old friend.
I still don’t read as much as I used to, or as I’d like to. That’s partly because the pace of my reading has slowed considerably, not just because of The Headache, but because the injury triggered symptoms associated with post-trauma vision syndrome.* The Free Dictionary defines PTVS this way:
A defect in visualperceptionthatfollows a neurologicalevent(e.g.,traumaticbraininjury,cerebrovascularaccident,multiplesclerosis,cerebralpalsy),which is characterised by theperception of movement by objectsthatareknown to be stationary,therunningtogether of printedtext,attempting to walk on a seeminglytiltedfloor,significantimbalanceandspatialdisorientationwhen in crowded,movingenvironments.
In the early days after my injury, I had all the above symptoms, and then some. The feeling of walking on a slanted floor is long gone, but I still become disoriented in a noisy, crowded room (MFA folks: this is part of why I don’t go to many parties), and I still see things moving out of the corner of my eye that I know aren’t moving.
The most frustrating symptoms for me have been the reading-related ones, like losing my place when I get to the end of a line of text; having double or blurred vision by the end of a day (or sometimes earlier); and needing to reread anywhere from a paragraph to a few pages because I’ve lost focus and absorbed nothing. Sometimes by the time I reach the end of a book, I feel like I’ve read at least half of it twice.
The good news is I’m not letting it stop me anymore. I knew I missed reading for pleasure, but I didn’t realize how much until I took it back. And it really was about taking it back. It was about deciding enough was enough, The Headache be damned, it was not going to run my life anymore.
My husband is a voracious reader, but he’s a library user. Not me; I like having a book collection, though I don’t collect books the way some people do. I’m the only one in my family without asthma, and books are dust-collectors, so I limit myself to two large bookcases in my office. Every few years, I used to clean out some of the old to make room for some new.
For several years, I didn’t need to do that. There was a disheartening lack of turnover on my bookshelves. But when I started the MFA program, I decided to change that, too. I cleared out one shelf for the nonfiction books and magazines I planned to read. I recently had to clear out a second shelf for the books, and a third for the magazines.
To people who have always read voraciously, collected books for decades, and don’t live with asthmatics, the single shelf in the picture probably doesn’t look like much. To me, it looks like heaven. When I took the photo, I decided to count up the books I’ve read since I started the program and discovered, to my surprise, I’ve read at least 30 in the past two years. (That’s not counting a few I took out of the library, dozens of magazines, and a dozen or more articles I read in the newspaper or online every day.)
I’m doing a lot better than I thought I was, and that makes me ridiculously happy.
Starting over in middle age is hard, especially when you have particular strikes against you that make it more difficult to keep up with younger peers, or your own expectations. But every so often I realize I’ve actually exceeded my expectations, and that by itself makes up for a lot.
* (For those interested in such things, my PTVS was identified by an optometrist who specialized in vision problems related to neurological dysfunction. It includes convergence insufficiency and mid-line shift. Medical doctors are more likely to refer to it as vestibular-ocular dysfunction. I later saw an opthamologist who provided the same diagnosis and remedy: glasses with refractive lenses, much like those Hillary Clinton used for a while after her concussion in 2012.)