[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.
My friend Guenther, non-Birkie wearing musician, nurse, therapist, writer, PhD, retiree, and now meditator.
Guenther Krueger is no stranger to starting over. I met him back in the early 1990s when we were both working as freelance journalists. At that time, I had no idea how many times he’d already started over.
Since then, we’ve been the kind of friends who see each other once every few years at social events. It was only recently we started getting together more often, after he read a blog post (which I’ve since taken down for personal reasons) in which I wrote frankly about some of my recent life troubles. He asked me out for coffee, and I found out a lot I’d never known about him, including that he’d recently been through a difficult time of his own, which led to his most recent “start over”—with meditation.
I would not have guessed Krueger was into meditation. To the best of my knowledge, he doesn’t wear Birkies. As far as I could see, he’s always had a sardonic wit and never let things bother him much. But after what he went through a couple of years ago, meditation was what gave him a fresh start—the thing that’s allowed him to ease into retirement and enjoy it instead of fretting over it, the way many new retirees do.
But I’m getting ahead of myself. Krueger’s first “start over” came when he was young, as happens for many of us. His youthful goal was to be a concert pianist but “I only lasted two weeks in the faculty of music at U of T.” He made a pretty radical career switch to nursing, where he worked in pediatrics for the better part of 12 years. He knew he wanted to work in health care and with kids, but nursing “was never really what I wanted to do.”
Then he did a master’s degree in counselling, but when he was finished, he realized he had only three real options: go on to a PhD, work for a company that was helping people get back in the workforce, or go into private practice. The first two didn’t appeal to him; the third, “I found frustrating because it would mean working with clients who could pay but had easily resolvable problems, rather than working with people with more challenging problems but who couldn’t pay.”
(Eventually, he did a second master’s, a liberal arts degree. Although it didn’t lead to a career, he does realize in hindsight that he got better and better at being a student with each degree.)
Then, in his late thirties (the mid-1980s), he realized “what I really wanted to do was write.” Like me, he started by taking a course with Vancouver’s legendary freelancer, Daniel Wood. (We might even have been in the same class.) Krueger remembers one class where the assignment was to write a query. “Daniel read it out as an example of everything NOT to do!” This is one of the things I love about Krueger: instead of taking it to heart, he took Wood’s advice, sent the revised letter to an editor, and “sold my first article on the basis of the very first query I ever sent out.”
He loved freelance journalism but, like most of us, he quickly realized there was not much money in it, so he got into reporting at medical conferences (the same type of work Claire Sower was doing), and picking up other contract jobs, too, as all freelancers do.
(“One of the things I noticed about freelancing is that nobody really understands it,” he says. “You’ll be at a party and someone will ask you what you do. You’ll say you’re a freelance writer and they’ll ask you one or two questions about what you write, not realizing that when you’re freelancing you basically write whatever pays. Then they lose interest.” I know just what he means. I’ve had exactly the same experience a hundred times.)
Around 2000, the medical reporting he was doing began to lean toward advertorial work for the pharmaceutical industry, which Krueger didn’t enjoy. “It was just what paid,” he says. Then in 2003, when he was in his late fifties, Krueger’s partner, Barry, who was then still part of the communications department [edited] at Simon Fraser University (he’s recently retired, though still in demand as a guest lecturer and performer) suggested Guenther talk to a colleague in communications about working with her on some grant applications she was writing [edited]. She was already pretty much assured of receiving a $3 million grant and suggested Krueger do a PhD there so they could work on that project together. “I thought about what I might like to do and realized I was really interested in how people cope with tragic loss,” he says. His acceptance to the program “effectively ended my freelance career.”
This is where things get really interesting for me. Other than my peers in the MFA program, I don’t know many people who are willing to start a new degree in their late fifties, much less a five-year commitment to a PhD. In his early sixties, freshly minted doctorate in hand, Krueger found his dream job on a three-year project at BC’s Children’s Hospital, bringing him full circle back to working with sick children, but in the way he’d always wanted.
Life was good, at least for a while. But in July 2014, his mother and father both died, just 10 days apart. He wasn’t close with his parents, so he didn’t expect to feel the loss acutely, and at first he didn’t. “I was the sole executor of the estate, and I treated it like I would any other project.” The whole thing was wrapped up by Christmas, and when he and Barry later went on holiday to Hawaii, he felt fine.
It was the following August, about a year after his parents died, that he suddenly started having anxiety attacks. “I’d wake up in the night, unable to sleep, and go out for a walk.” He found himself so wound up with anxiety that sometimes, in the evening, he’d go downstairs to his partner’s work space—something he’d never done in a relationship of 30-some years—and just lie down there for the sake of being close to someone who cared about him. “Barry felt badly because he wanted to do something to help, but being near him was all I needed.”
Eventually, Krueger started putting things together. He’d been through three major changes in his life almost simultaneously: the career-capping project at Children’s Hospital had wrapped up; he’d retired, which meant he wasn’t working for the first time in 50 years; and he’d been so busy with his parents’ estate that he hadn’t had time to think how he felt about their deaths. The losses had piled up, and were now compounded with a prostate issue and a hernia.
Once [edited] he realized this, he says, “I decided I had to attack the problem from all angles.” He went to his doctor to schedule surgeries for the prostate and hernia issues, started seeing a therapist to work out unresolved issues with his parents, and, on the advice of his therapist and some friends, started meditating.
Never one to do things in half measures, “I decided to read everything I could about meditation,” he says. The book he recommended to me when we got together last July was Full Catastrophe Living by Jon Kabat-Zinn. I promptly ordered and read it, and tried to follow Kabat-Zinn’s advice to the letter, but his eight-week program of building up to 45 minutes a day of a type of meditation he calls a “body scan” didn’t work for me.
“I don’t adhere to any one style of meditation,” Krueger says now. He doesn’t sit in a lotus posture, but lies down due to back pain (so do I). He doesn’t insist on any minimum amount of time, either. “I find that even if I sit still and focus on my breathing for as little as 10 minutes, my whole day goes better. I’m less stressed and more able to appreciate life in the moment. I’ve spent my whole life worrying about what comes next, and I’m not doing that anymore.”
Krueger’s partner recently retired and went off to Berlin to teach for four months. After his anxiety issues last year, Krueger was a little worried about how he’d do on his own for four months. “It’s been fine, and I think meditation is making the difference.”
Mid-sixties and still starting over—inspiring or exhausting? I’ll go with inspiring. Oh, and meditating for shorter periods and without doing the “body scan” is working better for me, too.