“I’ve often idly wondered why people make some of the smallest decisions: Does it matter which cookie I pick up from the plate or which stall I choose in a public bathroom? Will my choice change the course of my life?
“On November 27, 2003, at 3:30 p.m., I make one of those random choices. I work at my desk until about 2:00 p.m. At around 2:45, I run a brush through my hair and swish a dollop of toothpaste around my mouth. By 3:00, I’m picking up my younger daughter from her elementary school. At 3:15, we’re rushing into her big sister’s high school, unaware that by 4:30 I’ll be signing in at the emergency department of the local hospital….
“The door opens at precisely 3:30. The teacher says goodbye to the previous parents and hello to me. I follow her across the room, where she seats herself on one side of a table and motions to two chairs on the other side.
“I choose the nearest, and that choice changes my life.”
All too often, this is exactly the way a brain injury starts—not specifically with a parent-teacher meeting or a chair, but with a random action at a random time. Contrary to common belief, most concussions—the lay term for mild traumatic brain injury—do not happen to professional athletes or occur in motor vehicle accidents. Most mTBIs happen to random people doing random things at random moments in their lives.
I can’t review my own book, but I can give you a sample of what you’ll learn if you read it:
In Canada, 400,000 people aged twelve and older sustained at least one mTBI in 2019.
While 70–85% of mTBI sufferers recover within days or weeks, at least 15% and as many as 50% have symptoms for months or years.
It is not necessary to lose consciousness or have amnesia to have had an mTBI. In fact, only about 10% of mTBIs include loss of consciousness.
It is not necessary to have taken a hit to the head to have had a concussion. The problem is not what happens externally, but what happens when the brain is bounced around inside the skull, and that can easily happen during any rapid acceleration-deceleration (whiplash-type) event.
Despite facts like these, people who suffer so-called mild traumatic brain injury are often treated dismissively, even by their own physicians.
Facts like these—and many more—gave rise to my book’s title. As concussion experts who are far more learned than I have noted, there’s no such thing as a “mild” traumatic brain injury. I support this contention with research on mTBI that I updated roughly annually and on the challenges of taking such an injury through a personal injury lawsuit, which are even greater now than they were when I was doing so.
No Such Thing is a must-read for anyone who might one day make a random choice in the middle of an unremarkable meeting. Which is to say all of us.
Stephen Kimber
I believe my book is well written and compelling, but rather than taking my word for it, read these words from Stephen Kimber, the award-winning journalist and author who co-founded and formerly directed the Master of Fine Arts program in Creative Nonfiction Writing at University of King’s College in Halifax, from which I graduated in 2015:
“One day in the middle of an ordinary life, Lynne Melcombe went to what should have been an unremarkable meeting and made a random choice. No Such Thing: A True Story of “Mild” Traumatic Brain Injury and My Twenty-Year (so far) Recovery is her account of what followed that random choice—from the gaslighting, indifference, and ignorance of healthcare professionals to the gotcha tactics of shareholder-driven insurance company lawyers. No Such Thing is a painfully personal but powerful memoir of Melcombe’s struggle to heal from a so-called “mild” brain injury, but it is also a well-researched indictment of medical, legal, and political failure. It’s a must-read for anyone who might one day make a random choice in the middle of an unremarkable meeting. Which is to say all of us.”
No Such Thing will be published by Iguana Books imminently. Check back with this page or contact me directly at lynne at lynnemelcombe dot com to get your copy as soon as it’s released.
I’ve been mostly absent for a couple of months, first because I was on a much-needed vacation, and since then because I’ve been devoting my time to a book project of my own.
I undertook the MFA program so I could learn to write, not just any book, but this book.
This book recounts my experience of and research related to a “mild” TBI (concussion) that I had over 20 years ago and from which I’ve never fully recovered.
My experience taught me that there is “no such thing” as a “mild” traumatic brain injury. That’s why I’ve called my book No Such Thing: A True Story of “mild” Traumatic Brain Injury and My Twenty-Year (so far) Recovery.
Most people recover from concussions in a few days—weeks at most.
But up to 30% of people don’t. Some go on having symptoms for months, even years.
I’ve never fully recovered from my injury. I felt a need to write a book about it for a few reasons.
Brain injury is very isolating. The injury itself—pain, brain fog, memory loss—can make it hard to communicate.
Many people—doctors, lawyers, co-workers, friends, family—don’t believe you. That makes the pain and isolation worse.
The stigma against people who pursue legal measures based on ongoing misperceptions about brain injury add stress and emotional trauma that complicate a person’s ability to recover.
There wasn’t much to support people going through this experience twenty years ago. Anyone going through it now deserves better.
At the time of my injury, I often felt like I was going crazy.
Doctors kept telling me I should be better. Lawyers put my life under a microscope. Family, friends, and coworkers acted—and sometimes said—I was just looking for attention and I needed to get over it.
But as years went by and social media exploded, I began hearing other people’s stories of not-so-mild traumatic brain injury. I began keeping abreast of current research that supported what they were going through.
Gradually, I stopped questioning my own perceptions.
When I wrote my book, I was writing the book I needed at the time.
I wrote it for the people who need it now, for those who love them, and for those who want to better understand this underestimated injury.
I finished my book a couple of years ago and, full of hope, I started looking for a publisher.
Every one of them responded the same way: timely topic, great story, well written, but I lacked enough of an audience to justify their investment in publishing it.
One of the things I learned in the MFA program was the necessity of building an audience while writing my book.
But while I was writing, I was coping with a divorce, navigating health issues, and rebuilding a freelance writing and editing business.
I was also managing the symptoms of my injury every day.
I lacked the ability to do it all.
At first, when I realized that no “real” publishers wanted my book, I felt like I’d failed.
But I also realized that if I gave up and left my book sitting in a virtual drawer, that would feel like failure too.
A hybrid publisher retains the quality controls conventional publishers rely on but with a requirement that authors cover production costs, as they would in self-publishing.
Iguana takes hybrid publishing a step further by asking their authors to crowdfund production costs. This ensures costs are covered and allows authors to test the market and build an audience for their book.
Iguana recommended Kickstarter, a crowdfunding platform designed specifically for creators.
As I started building my Kickstarter campaign, an interesting thing happened.
I stopped feeling like I’d failed.
I realized that no matter how I publish my book, it will succeed based on same things as any other book—my research, my writing, and my promotional efforts.
That realization has renewed my confidence in my abilities, injected my efforts with energy, and restored my faith in the book I’ve written.
That’s where you come in.
I need your support to raise the $9,000 required to fund the production process—copy editing, layout, distribution. And I’m asking you to pledge whatever you can to help me get there.
Please go to my Kickstarter campaign page and learn more about why I feel my book is timely, important, and necessary.
Then consider backing my project with a pledge in any amount you can manage.
What’s in it for you?
If you pledge $10 or more, you’ll receive a reward tailored to the size of your contribution—an e-book, a signed paperback with No Such Thing bookmarks, or a book club special for buying in bulk.
If you pledge less than $10—even only $1—I’ll give you a shout-out on social media and add your name to the acknowledgements in my book.
If I don’t reach my $9,000 goal by March 15, my campaign will end and Kickstarter won’t collect any pledges.
You have nothing to lose.
What should you do next?
Well, you can click away to another page, if you want.
Or you can go to my campaign page, read more about my book, and consider making a pledge.
If you think my project is worth backing, click the button for a reminder when my campaign goes live on February 16. Then, if you still feel so inclined, pledge whatever you feel is right.
If you change your mind before my campaign ends, you can change or withdraw your pledge. No questions, no obligations.
This week’s post is not about a book—well it is, sort of; and it’s not about a UKing’s grad, although it is about someone who attended the MFA in Creative Nonfiction program.
Julia Nunes, who has cowritten two books on mental health with Scott Simmie, was in the class of 2016. We hit it off while we were in New York for the publishing residency. My book (which will be released in the spring) is about a concussion I suffered over twenty years ago now. She, too, was writing about concussion, focusing on her son, who was at that time lying in bed with, if memory serves, his second hockey concussion—crushing headaches, severe photophobia, disorienting dizziness, ongoing vomiting, the whole nine yards.
The first night we were in New York, I was out to dinner with Deirdre Macdonald (a peer in the class of 2015 who’s just released her MFA book project, Her Hat in the Ring: Toronto Milliner El Jamon and Her Circle). As we got up to leave, I slipped on a piece of tomato on the floor and fell backward, striking the back of my head on the corner of a table in almost exactly the same spot I had struck in 2003, when I sustained the concussion I was writing about.
I went by ambulance to the hospital (with Deirdre, bless her) and yes, I had another concussion. It nearly ruined my time in New York—headaches, dizziness, thankfully not vomiting—so I only attended a few of the lectures (couldn’t focus for long) and none of the social events (way too loud). By the last day, I was feeling a bit better, so Julia and I explored The Highline and walked around Strand Books.
I finished my degree that year; Julia didn’t get to finish the year because a short while later she fell and had a severe concussion. It took her months to recover. I think she’d hoped to return the following year, but then she suffered another concussion, and another (having one concussion increases the risk of having another).
So, she never finished her degree (or, as far as I know, the book about the inadequate way children’s sports teams were dealing with concussion in players). However, I recently read an excellent book called Impact: Women Writing After Concussion, edited by ED Morin and Jane Cawthorne (University of Alberta Press, 2021). Toward the end of this wonderful and vindicating anthology of essays is an essay by Julia Nunes called “The Next Hit.”
This excerpt hit home for me:
I attended a speech recently by a woman who lived first with post-concussion syndrome (PCS) and then with breast cancer. She shared a PowerPoint graph called “Sympathy by Casserole.” The comparison was stark: friends and family delivered more than sixty meals as she underwent chemotherapy versus zero meals post-concussion. Yet breast cancer, she said, was a breeze compared to PCS. The pain was less intense and the brain fog of chemotherapy had nothing on the confused, muddy state of the concussed mind.
I had something like this happen to me not long after my concussion. A friend who no longer lives on the Pacific Coast came into town with her husband for three months. In all that time, she found forty-five minutes for me but visited a friend who was dealing with breast cancer numerous times. When I expressed my hurt, she responded with something like, “Lynne, she has cancer. You bumped your head.”
No one really understands concussion until and unless they live through it; no one understands that while seventy to eighty-five percent of concussions heal within days, weeks, or months, the other fifteen to thirty percent can continue causing symptoms for years, even lifetimes.
Sadly, I know Julia understands—sadly because as much I’d like people to understand better, I wouldn’t wish a single concussion on anyone, much less multiple concussions.
If you’ve never had a concussion and would like to understand it better, read Impact, starting with Julia Nunes’ excellent essay, “The Next Hit.”
And if you’ve had a concussion and would like to see your experiences reflected accurately on a page, read Impact, starting with Julia Nunes’ excellent essay, “The Next Hit.”
Here are other books from the prolific graduating class of 2016:
Sit Still and Prosper: How a Former Money Manager Discovered the Path to Investing with Greater Clarity, Calmness, and Confidence, by Stephanie Griffiths. Review coming soon.
A Distorted Revolution: How Eric’s Trip Changed Music, Moncton and Me, by Jason Murray. Review coming soon.
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.
