Kathryn Blaze Baum is a national reporter for the Globe and Mail.
Feet together and eyes closed, I stood as still as my brain would allow. In a series of tests, I touched my finger to my nose, stuck out my tongue, and tracked a mini flashlight with my gaze. I took a few steps toward the doctor and then turned 180 degrees on my right foot, walking back toward the research fellow. I was told five unrelated words – “steeple” among them, as I recall – and then, some minutes later, was asked to repeat them.
I had performed versions of this neurological-gymnastics routine in various doctors’ offices, but this appointment at Toronto Western Hospital on a February afternoon in 2017 felt particularly fraught. It had been more than three months since I suffered what my family physician described in her initial assessment as a “mild concussion.” And yet, there I was, anxiously pirouetting in the office of Charles Tator, an internationally renowned neurosurgeon known widely in Canada as “the guy” when it comes to concussions.
I wanted to know why my symptoms – primarily, agonizing migraines – refused to subside. Would I ever feel like myself again? After all, I was an otherwise healthy, active 32-year-old who had endured only a “mild concussion” the November before, when a car door swung back and slammed against my head. As my medical records point out, my injury caused no lacerations, no bruising, no loss of consciousness, no amnesia, no double vision, no vomiting. Just a run-of-the-mill “mild concussion.”
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Over the coming weeks, my “mild concussion” morphed into post-concussion syndrome (PCS), an arbitrary diagnosis for those whose symptoms persist beyond one or three months, depending on the definition used. My “mild concussion” and PCS reduced me from an energetic, social woman and passionate journalist to an anxious and depressed migrainer who lived in a mental fog and was extraordinarily sensitive to light and sound.
Opening the fridge was like staring into the sun. I was so aurally sensitive that retrieving a fork from the cutlery drawer was akin to a game of pick-up-sticks. Do. Not. Disturb. The. Other. Utensils. Driving over a speed bump felt like my own personal earthquake. Headlights, even during the day, pierced my retinas like needles. The most innocuous of sounds made me want to put a pillow over my head – fingers flitting on a keyboard, keys jingling in my pocket, the refrigerator fan humming, a ticking clock. Leaf blowers, I came to decide, are not merely serial annoyances; they are pure evil. I was constantly asking my husband, Daniel, to dim or turn off lights and to speak quietly (or not at all). The blow to my head also caused tinnitus, a torturous ringing in the ears.
If I looked at a screen for too long – at first, that meant for more than even a minute – pressure would wrap around my skull, gripping it like a vise. The pain was crushing, sometimes stabbing behind my eyes and pulsating at my temples, sometimes dullish and achy. It felt as if every fibre of my brain was swelling and there was no room for expansion. At the same time, my brain felt warm, like an overheated computer going on the fritz, each thought a new program running in the background – overwhelming the network, vibrating with a sense of impending doom. I walked around smelling like a candy cane, my forehead slathered in Saje Peppermint Halo headache remedy, a blend of essential oils that provided far more relief than any over-the-counter pain reliever I tried. It was the cool to the hot.
I often cried myself to sleep; and in sleep, at least, there was peace. There was a time when I woke every single morning with a migraine.
I couldn’t exchange e-mails or texts. Even phone calls or face-to-face conversations were painful for the simple fact that I had to use my brain. I was glad to have company, but I also dreaded the interaction and found myself running analysis as it was happening. Am I okay? Do I feel worse? Am I about to feel worse? And I was bored listening to myself speak, especially in answer to the innocuous, loaded question: “How’s today going?”
A delivery man arrived with our new kitchen range about two weeks after my injury; somehow the appliance had been damaged. The man explained our options: He could take it back; we could accept it damaged and get a partial refund; he could call his supervisor. It was sunny and, even though I was wearing a baseball cap and sunglasses, I could hardly bear to look at him as we stood in the driveway. I couldn’t follow what he was saying. My brain felt at once hypersensitive and non-existent. Overwhelmed, I called Daniel so he could come home from work and take over what in hindsight was a pretty straightforward conversation.
As the days wore on, Daniel read me the e-mails and texts I was receiving from concerned friends, family and colleagues. One such missive came in late November from a friend, who, like an estimated 200,000 others annually in Canada, had suffered a concussion of his own, about a year earlier. He had compiled a list of a dozen recovery tips, including some from his doctors and some gleaned from a friend who played in the National Hockey League and who had access to the latest treatment protocols.
Daniel, his arm around me, read them aloud as tears streamed down my face. There was practical advice – drink lots of water, get your omega-3 fatty acids, move like a sloth – but it was this revelation that I needed to hear most: “With a regular injury (muscle or tendon), the injury will be sending messages to the brain over the course of the recovery, sort of like progress updates, which is why you can slowly feel a twisted ankle or a bumped knee getting better each day. But the brain can’t talk to itself, can’t send signals to itself, so you won’t necessarily feel like you’re getting any better with a concussion.”
The brain can’t talk to itself. The brain can’t talk to itself. The brain can’t talk to itself. I had to trust I was getting better, even if I didn’t feel any better. Even if my brain wasn’t letting me know.
It was a soothing mantra. Turns out it isn’t entirely accurate. When I interviewed Dr. Tator for this essay last month, he explained that the brain is an “exquisite organ” that can, in fact, disseminate messages about how it is faring, but that these messages arrive in the form of symptoms that are both cryptic and nasty. And when it comes to concussions, science has identified more than 60 potential symptoms, including headaches, confusion, balance problems, neck pain, nausea, sensitivity to light and sound, vertigo, and irritability. They can arise immediately after the injury, or within minutes, hours or days.
My friend’s doctor had told him one thing. Mine told me another. Such is life in the realm of concussions.
The conflicting advice out there is dizzying. Push through your symptoms. Stop what you’re doing the moment your symptoms are exacerbated. Rest in a dark room until you feel better. Take it easy for the first 24 hours, but then get out into the world and do some light exercise. Don’t socialize. Socialize, because it will help stave off depression. If you were hurt playing hockey, quit the sport. Get back on the ice as soon as you feel up to it. If you aren’t better in three days, you will be better in three weeks, and if not in three weeks, in three months. No, no, that’s a myth.
One thing is certain: The brain is unique in that, unlike a twisted ankle or bumped knee, you can’t simply stop using it entirely and give it total reprieve after an injury. With a concussion, there is no escape. I felt claustrophobic in my own body. Beyond all this, there is no surefire diagnostic test, no reliable prognosis, no prescription fix, no clear-cut treatment and, perhaps worst of all, no tangible evidence the concussion had even happened. The simple passage of time is apparently the best remedy for such an enigmatic ailment. How frustrating it was for me to be assigned a passive role in my own healing.
“We tried to reassure [Ms. Baum] that she will continue to recover, but that we are unable to determine the extent of the recovery that will occur, or its rate,” Dr. Tator’s research fellow said in his summary of my initial appointment that February day.
This summary was among the more than 100 pages of medical records, notes and imaging I obtained from several of my health-care providers. I also ordered a digital copy of my MRI (or magnetic resonance imaging) scan from Toronto’s Mount Sinai Hospital, where, as have so many others seeking clarity on health issues, I had lain perfectly still for about a half-hour in a machine that looks like a sci-fi coffin and sounds, from the inside, like a plane taking off.
As a journalist, I have many times pored over documents tracing the life and times of others. Now, I was the subject. I crawled into bed one night with this two-inch stack of records, devouring it like a juicy novel.
Delivered in a combination of typed fonts and barely legible handwriting, it was meticulous and illuminating. I am “well-groomed,” pleasant, highly motivated and Type A. And while I apparently tend to internalize and not lash out, I can quickly become irritable. Depressed. Anxious. The Kathryn in the file was basically a sad version of who I was before. And, to state the obvious, she was not as good as she had thought at concealing just how distraught she had become as the days, weeks and months went on and on and on.
Among the documents was an audiology report that found me to have had "normal eardrum movement" and “normal hearing sensitivity.” And yet, I perpetually felt as if I had just left a rock concert. The ringing wasn't loud, but it was there. All the time. The condition was made even more cruel by my mostly quiet existence; the frequency was all I could perceive.
Into this unquiet quiet crept boredom. My groundhog days consisted of a morning and afternoon walk, and listening to guided meditations on low volume in the bath. What my days did not include were engagement parties, birthday celebrations, school concerts, family dinners and vacations. In the summer of 2017, I was nearly a no-show at my brother's wedding; I drove myself home as my family was hitting the dance floor.
Thankfully, I am married to a supportive spouse, am close with my family and friends, live in Toronto with relatively easy access to specialists, am employed with benefits, have understanding editors and was assigned compassionate disability caseworkers by The Globe’s insurer, Manulife Financial. Thankfully, my family physician knew to refer me not just to Dr. Tator, but also to Christine Curan, a clinical neuropsychologist in Toronto who specializes in concussions. Thankfully, we could afford to pay for immediate access to Dr. Curan’s non-insured services, rather than wait what turned out to be nearly three months before I got in for an OHIP-covered appointment with Dr. Tator.
I quickly blew through my annual Manulife health benefits for psychological services and, deciding to continue availing myself of Dr. Curan’s support and advice on how to survive daily life with a concussion, ended up spending around $3,500 out of pocket over the course of about nine months. Without the sports infrastructure that wraps around injured athletes, Dr. Curan became something of a recovery coach. In fact, she sees her role as an even more full-fledged member of the team: She calls herself a “quarterback.”
While the vast majority of concussion patients are symptom-free within a few weeks, it would be about 11 months from the date of my injury before I was well enough to return to work. In the thick of the multiple miseries that defined my “mild concussion,” I felt immense gratitude for all the support I had. And I worry, now that I am out the other end, that others diagnosed with a concussion are not as well positioned to emerge as close to whole as I have. I can’t help but think that there are people suffering across the country, right now, who are going it mostly alone, mostly in the dark.
OF A CONCUSSION
The human brain is protected primarily by the skull and is suspended in a fluid that cushions it. In a concussion, the brain
decelerates suddenly and is slammed again the skull. The rotational forces exerted near the brain stem can trigger a loss of
consciousness and other symptoms.
The strain on brain tissue due to rotational forces can stretch axons, the long tails
of neurons that transmit electrical signals, causing them to short circuit. Damage to
the channels that move chemicals up and down the axons may kill neurons and cause longer term effects associated with some
TRISH McALASTER / THE GLOBE AND MAIL
THE MECHANICS OF A CONCUSSION
The human brain is protected primarily by the skull and is suspended in a fluid that cushions it. In a concussion, the brain decelerates suddenly and
is slammed again the skull. The rotational forces exerted near the brain stem can trigger a loss
of consciousness and other symptoms.
The strain on brain tissue due to rotational forces can stretch axons, the long tails of neurons that transmit electrical signals, causing them to short circuit. Damage to the channels that move
chemicals up and down the axons may kill neurons and cause longer term effects associated with some
TRISH McALASTER / THE GLOBE AND MAIL
THE MECHANICS OF A CONCUSSION
The human brain is protected
primarily by the skull and is
suspended in a fluid that cushions
it. In a concussion, the brain
decelerates suddenly and is slammed again the skull.
The rotational forces exerted near the brain stem can trigger a loss of consciousness and other symptoms.
The strain on brain tissue due
to rotational forces can stretch axons, the long tails of neurons that transmit electrical signals, causing them to short circuit. Damage to
the channels that move chemicals
up and down the axons may kill neurons and cause longer term effects associated with some
TRISH McALASTER / THE GLOBE AND MAIL
NO SUCH THING AS ‘RETURN TO LIFE’
Medical bodies offer varying definitions of concussion, but most refer to the condition as a “mild traumatic brain injury,” often but not exclusively caused by a blow to the head. It is today widely accepted that loss of consciousness and amnesia are potential signs that a concussion has occurred, but are not requirements for a positive diagnosis.
“Concussions are so individual,” Dr. Tator says. “Some people can get 10 or 20 and bounce back from them all.”
Others are like me.
Despite the heightened awareness of concussions as a public-health issue, there is much about them that remains a mystery. “We know that a concussion is due to a jiggle of the brain, which in mechanical-engineering terms is ‘rotational acceleration,’ ” Dr. Tator says. Linear movement of the brain – from front to back – does not appear to be as detrimental as does a sort of swirling of the brain, he says. It’s like spinning a bowl of Jell-O, only the bowl is your skull and the Jell-O is your brain. “But why does the jiggling of the brain result in a concussion? We don’t know … . We know that your brain wasn’t bruised, but we don’t know what happened, exactly, inside.” The damage, he explains, is probably a matter of microscopic fibres or chemicals that aren’t working right. It is certainly not a matter of major structural damage.
Doctors, governments and sports bodies in Canada and abroad have done much in recent years to address the issue of concussions in professional and amateur sport. In 2015, Prime Minister Justin Trudeau tasked his ministers of health and sport with initiating a “national strategy to raise awareness for parents, coaches, and athletes on concussion treatment.” With federal funding, Parachute, a national charity dedicated to injury prevention, developed a set of concussion guidelines in 2017 that have since been adopted by dozens of sports organizations across the country. Dr. Tator is on Parachute’s expert advisory committee and helped develop the protocols, which include preseason education, removal from play if a concussion is suspected and the requirement for a medical-clearance letter before returning to full-contact practice and competition.
The Ontario government last year passed concussion-safety legislation to protect amateur athletes in the wake of an inquest into the 2013 death of Rowan Stringer, a 17-year-old rugby player who died as a result of a major blow to the head following multiple concussions. (Dr. Tator gave expert testimony at the inquest into her death.) Amid increased awareness around chronic traumatic encephalopathy, a degenerative disease of the brain, the NHL and the National Football League have come under intense pressure to enhance their concussion protocols. Just a couple of weeks ago, several Canadian Olympic bodies jointly released their own guidelines for high-performance athletes.
This level of attention and scrutiny is welcome. But it leaves out people like me – those of us who weren’t injured on the field or ice. We don’t have a place in the national concussion conversation and, in turn, we have a much tougher time navigating the treatment apparatus. It is all about “return to play.” But what about “return to life?” What about “return to work?” Dr. Curan may have been quarterbacking my daily life, but there was no coach, trainer or team doctor on hand to guide me through the recovery process.
When I interviewed my family physician, Anca Facy, a few weeks ago, she said she was treating two patients with persistent concussion symptoms – and neither had been injured playing sports. Neither had lost consciousness or suffered amnesia, and both were diagnosed with “mild concussions.” Neither could afford Dr. Curan’s services. One was off work for five months, the other for almost 10.
“There are big gaps in terms of how to take care of these patients,” Dr. Facy says. “For us, as family doctors, it’s really a feeling of being so useless, helpless and confused – not really knowing what to do and where to go. Where do we send these patients?”
She spoke of referring people to clinics but then learning they don’t qualify; of long wait times for provincially insured services; of patients quarrelling with their insurance provider because it was just a “mild concussion”; of wanting to set someone up with psychological support but knowing the services aren’t OHIP-covered and the patient can’t afford them, especially if they’re now on short- or long-term disability or employment insurance. “It’s quite confusing for both sides: for primary-care physicians and patients,” Dr. Facy says.
Useless. Helpless. Confused. That was how I felt. Who knew my family doctor felt that way, too?
Dr. Facy says she “absolutely” agrees that the current public dialogue on concussions is hyperfocused on sports – that it is narrow to a fault. The knowledge that some people so desperately need flows mostly from, and into, the sports world. And there are many concussion sufferers not in that world.
According to the Canadian Institute for Health Information, there were 3,372 hospital admissions for concussion diagnoses in 2016-2017 (this does not include emergency department visits). Of those hospitalizations, 2,731 were not sports-related. That’s 81 per cent.
The Canadian Concussion Centre, a research project headed by Dr. Tator and based out of the Krembil Brain Institute at Toronto Western, offers a snapshot of its own. The centre has a living database of more than 830 concussion patients dating back to 1997 (most of the incidents occurred over the past decade). Half of the concussions were not sports-related: Motor-vehicle crashes and falls each accounted for 16 per cent; the “other” category, which includes assault and being struck by an object, constituted 14 per cent; 3 per cent were school-related; 1 per cent were work-related – for example, an electrician whacking her head on a low ceiling.
I am an “other.”
THAT DAMNED DOOR
It was the morning of Sunday, Nov. 6, 2016, and my parents were visiting from Kelowna, B.C. My husband and I got into our SUV and drove less than 10 minutes to my brother’s house, where some of my siblings and their spouses were meeting for lunch and a walk. I turned onto my brother’s beautiful tree-lined street, and pulled up to the curb to park. That beautiful street, I soon found out, is also angled downward toward the sidewalk.
I swung the heavy door open and started to get out (or maybe I was going back in for something; that part is fuzzy), but the door didn’t stay ajar. Instead, it sprang back, the force of momentum and the angle of the road conspiring against me. I remember the nanosecond before impact. The door wasn’t supposed to be coming toward me, but there it was. In slow motion but fast-forward. I was completely powerless and completely aware.
The weighty hunk of metal slammed into the left side of my head: Impact No. 1. That sent the right side of my noggin hard into the car frame: Impact No. 2. The blows were distinct but almost simultaneous, each with its own walloping thud. I leaned on the car for balance and crumpled to the ground crying. Through my tears, I saw Daniel. He sat with me while I gained control of my breathing and gathered myself. He helped me up and we slowly walked to the house. I was slightly nauseated, dazed and dizzy. Within a few minutes, I had a headache. I didn’t lose consciousness and I didn’t vomit.
I knew enough about concussions to realize it was possible I had just gotten one. I figured there wasn’t much to do at that moment, other than rest, keep an eye on things and treat the headache with Tylenol. I lay down on the couch and iced the initial point of contact, my left temporal lobe. I asked my brother to lower the volume of the football game. Eventually I went upstairs for some tranquillity. That night at home, I crawled into bed with a ringing in my left ear and a migraine.
(Even though I wasn’t exhibiting the typical red flags of an injury as severe as, say, a brain bleed – vomiting, excessive drowsiness, large pupils or weakness of an arm or leg, for example – I should have seen a doctor within a few hours, Dr. Tator says. And when it comes to sleep, it’s no longer standard protocol to wake a person every hour or so; if the patient has been cleared by a doctor, restorative sleep is important.)
The next morning, I woke up groggy to an e-mail from an editor asking me to jump on a breaking story, which I decided I would do from home. It was painful: I had trouble comprehending background material. I strained to keep my train of thought during interviews. Partway through a sentence, I forgot what I was writing. After I filed, an editor called with lots of questions. I felt as if I was operating at a small fraction of my cognitive abilities as I laboured to answer them.
I hung up the phone and burst into tears. I remember telling Daniel some version of, “I don’t know what’s going on. This is crazy. I can’t think straight. I’m in so much pain.”
Even still, I dismissed the injury as, at most, a mild concussion, a diagnosis confirmed at an appointment with Dr. Facy a couple of days later. Because my work doesn’t involve getting tackled or checked into the boards, I wrongly assumed I could soon get back into the newsroom. I e-mailed one of my editors four days after the incident: “At home/off with a minor concussion – all good, just resting, as per doctor’s orders. Sleeping a ton and not really looking at screens.”
I had expected my mild concussion to resolve quickly. Instead, my traumatic brain injury proved debilitating.
The same was true of so many of those people who would come out of the woodwork over the next two years, asking for – or sharing – advice on how to navigate the health-care system, feel better and stay sane.
There was the colleague who had stood on a stool to reach for a light bulb and then tumbled to the floor, hitting her chin on the stove. There was the schoolteacher who had tripped in a hotel room. There was the guy who had been in a car accident.
One woman I later met, a business owner I will refer to as Jane, to protect her privacy, smacked her head on the corner of a locker door at a spa as she stood up from removing her shoes. She, too, was diagnosed with a “mild concussion,” and she, too, was symptomatic for the better part of a year (nausea, fatigue, headaches, interrupted sleep, vertigo, tinnitus and a litany of other symptoms). For a time, Jane’s neighbours in Toronto helped her husband with the day-to-day tasks involved in caring for their daughters. Then, soon after returning to work, she was knocked unconscious by a chunk of ice that fell from a building. Naturally, she feared it would again take many months to recover. She was fine within about a month.
Jane told me that one doctor implied that her initial injury was, in the dismissive sense of the phrase, all in her head – that what she really needed was a vacation. Not only did she field condescension, but her symptoms forced a shutdown of her life. “So here I am, a high-functioning individual … and I’m brought to my knees, sitting in a dark room for three months,” she said in a recent interview.
It is because of cases like ours that Dr. Tator takes great umbrage at the use of the adjective “mild” in conjunction with concussions. “I never use that word,” he tells me. “I think the term ‘mild traumatic brain injury’ is an oxymoron. How can something be ‘mild’ if it causes symptoms that can last many years? I always simply use the word ‘concussion.’ ”
Many in the medical field, he laments, still give an initial diagnosis of mild concussion, even though there’s no evidenced-based mechanism with which to grade a concussion. Mild, moderate, severe, Grade I, Grade II, Grade III – these technical classifications are all “bogus,” he says. “How could your concussion be mild?” he asked me.
Great (expletive) question.
‘THAT’S THE INJURED BRAIN SPEAKING’
At my worst, in the first weeks after my injury, I was, not unlike Jane, alone in a dark room, curled up in bed. As my condition ever so slowly improved, albeit on a non-linear trajectory with many ups and downs, I trod a delicate balance between hibernation and living some kind of life. I was able to go for walks in nature, write in my Five-Minute Journal, listen to music without lyrics and to podcasts on familiar subjects, do light exercise at home on a stationary bike and have a dimly lit meal with my husband. My doctors said Daniel and I were free to continue trying for a baby, so long as doing so didn’t worsen my symptoms.
A few months into my recovery, the anxiety and depression took hold. Loved ones who live in Toronto visited when I was well enough, offering hugs and homemade comfort food, each dish providing me a welcome few minutes of distraction. My taste buds were remarkably alive in the absence of other sensory input. Those who live elsewhere sent brief messages and called often to tell me they love me and that I would be okay.
My husband was my safe place and my voice of reason. In his presence, I somehow felt protected from the thing that was plaguing me from the inside, as if he was bigger than the pain and capable of coaxing it out of me by the sheer force of his conviction. I was constantly offering apologies for feeling this or saying that or doing this or not doing that. He told me I had nothing to be sorry for. And yet, imagine his life then. Daniel had to watch me struggle against something he couldn’t see, all the while trusting that the woman he had married would some day re-emerge. In sickness and in health, as they say.
In time, I started to resign myself to the possibility that I would never feel normal again. An Uber driver once asked me what I did for work, and I told him I was a reporter at The Globe and Mail. The moment I said it, I felt like a fraud. Would I ever again get to do interviews, break news, tell stories? My identity was so wrapped up in my career that when I had to hit pause, I felt wobbly in my sense of self. It was all very existential. I wanted to lop off my head and jump out the window.
“Ms. Baum continues to experience emotional lability,” Dr. Curan wrote in a seven-page neuropsychological consultation report, in early 2017. “She feels sad at times. She can quickly become irritable, but tends to internalize and not verbally strike out.” It went on: “She finds the slow pace of recovery intensely frustrating but has experienced setbacks when she has pushed herself too hard.”
I recently asked Dr. Curan what it had been like to treat me. How did I come across to her all those months ago? “You were very much used to working at something hard enough that you get the result you’re looking for,” she said. “My biggest challenge was slowing you down without instilling a sense of hopelessness, helplessness and frustration in you. … You turned the corner when you stopped fighting so hard.”
To fight, in other words, was to invite failure. And fight and fail I did.
About a month before Dr. Curan penned that report, Dr. Tator asked if I would participate in a study on the utility of Kindle-like screens for PCS patients with photosensitivity. I told him I would be a lab rat. As it turns out, I would be unsuccessful even at that.
Twenty-nine people participated in the study, according to the results published in the Journal of Neurotrauma last year. Participants were to make two visits to the Canadian Concussion Centre at least 24 hours apart. During the first of those, we were asked to complete a reading task and comprehension quiz on either a typical LCD (liquid crystal display) computer screen or on a Kindle-like e-reader; during the second visit, we would use the other device. We were to stop reading once symptoms became exacerbated, to a maximum of 30 minutes, and then fill out a questionnaire.
The Neurotrauma article explains that traditional computer screens – which are backlit and have a faster refresh rate than do e-readers – make it difficult for patients with PCS “to fuse images at that flicker frequency.” I had gone into the first session migraine-free, and I stupidly and stubbornly pushed myself to the maximum with the traditional screen I was assigned.
“Would non-LCD devices be useful in workplaces and schools for patients with post-concussion syndrome who are returning to work or returning to school?” the questionnaire asked, among other things. I’m sure I ticked “Yes.”
I didn’t, however, make it to the second session. The first caused me enough grief; the migraine that was preparing to bare its teeth during the experiment had clamped its jaw on my brain. With a scarf over my head to block out the sunlight and with my hands pressed hard over my ears, I cried the whole Uber ride home. I was, in the end, eliminated from the study.
It was around this time that I had also just begun a very gradual return-to-work program. Dr. Curan had voiced both skepticism and concern, but this was a mistake I had to make on my own.
“[I] have spent the better part of the past several days in bed, in the dark, with an excruciating, relentless headache, not to mention sensitivity to light and ringing in my ears,” I wrote to my caseworker on Feb. 20, 2017. “Anyhow, I’ve officially suffered what feels like a severe setback/flare-up. It’s been a week since I’ve had even five minutes without a headache … I need to get this headache back down to a 0/10. That is my only priority right now. I am resting and napping and going for walks if I feel up to it.”
Several of my doctors advised me to “shut it down,” as they say in the concussion world. This meant no screens, no social visits, no unnecessary or long phone calls, no cooking while listening to the radio.
About a month later, I was out for one of my usual long walks, making my way to a trail near our home. I had never had suicidal ideations before, so I was taken aback when I casually mused: “What if I just stepped off the curb into oncoming traffic?” Days later, I was slicing an apple and saw the knife as a weapon. I mostly kept these thoughts to myself. I didn’t want anyone to worry I would actually harm myself.
“I didn’t think you were high-risk,” Ari Zaretsky, Sunnybrook Health Sciences Centre’s psychiatrist-in-chief, said in a recent interview about our sessions. “But your thoughts about suicide were a sign of your despondency – a fear that you would have to put up with this condition for a very long time.”
It was the injury talking. I knew this. As quickly as the thoughts emerged, they dissipated. Still, I sought reprieve in a prescription medication used to treat depression and anxiety. Not only did the ideations subside, but my mind was generally quieter. I ruminated with less intensity and less frequency; it seems only logical that this allowed my brain a modicum of the rest it needed to heal.
Had I confided in Dr. Tator at the time, he would have told me what I knew instinctively: Trauma to the brain can manifest as psychological messages. “It’s not that you’re depressed because you’re sad,” he explained in my interview with him. “That’s the injured brain speaking.” Had I confided in Dr. Curan, she’d have told me, as she did when I interviewed her, that I was experiencing “intrusive thoughts,” and that ideation and intent are vastly different things.
Still, by now my calendar entries were almost exclusively medical appointments, and I was at my wits’ end. So, when Dr. Curan suggested I add another doctor to my roster of a half-dozen health professionals, I was reluctant but willing. It was April of 2017 when she pointed me to Back In Action, a Complete Concussion Management clinic in Toronto that offers chiropractic and physiotherapy services, among others.
At my first appointment with my chiropractor, Cory Grosman, I strapped on a heart-rate monitor and performed the Buffalo Concussion Treadmill Test, walking briskly and raising the incline one degree a minute. I rated my exertion and symptoms with each incline change, in order to get a sense of my exercise tolerance, and to determine an appropriate level of physical activity going forward. I was cleared and encouraged to do some light physical activity each day (the latest best practice). There is evidence to suggest, I was told, that raising my heart rate to just below my symptom threshold would increase blood flow to my brain and help with the healing process.
At my twice-weekly appointments, Dr. Grosman did soft-tissue therapy on my neck and, after assessing my balance and eye movement, guided me through a tailored set of visual-rehabilitation exercises aimed at reducing my headaches. Basically, I was assigned homework for my eyes. I taped four playing cards, in the shape of a diamond, to a closet door, darting my eyes up and down, left and right. Like a hitchhiker, I held up my thumb at arm’s length from my face, and moved my head side to side with my eyes fixed firmly on my thumb.
I also set my phone to inverted monochrome mode (still black-and-white, but the background is dark instead of bright), I went for acupuncture, increased my protein intake and listened to the sound of ocean waves on a smartphone app to mask the tinnitus as I fell asleep.
Still, come May of 2017, short-term disability gave way to long-term disability. I was incredulous. How could it be that I, a go-getter reporter with no visible injury, was on long-term disability? An unknown number of others might be asking themselves a version of that question. The Canadian Life and Health Insurance Association says it does not keep data on disability claims resulting from particular types of injuries, such as concussions.
Manulife, which provides five million Canadians with extended-health benefit plans, says that concussions represented 1 per cent of their disability claims in 2017 and 2018. Short-term cases lasted an average of 8.2 weeks, and long-term cases lasted an average of 11.1 months. It is unclear how much money concussions cost the Canadian economy more broadly, including in health-care dollars spent on medical imaging for patients whose results almost always come back “normal.”
THE LONG WALK TO SYMPTOM-FREEDOM
Unless a concussion is complicated by, for instance, a skull fracture or hemorrhage, nothing abnormal about the brain will register on an MRI or CT (computerized tomography) scan, which uses a series of X-rays to create detailed images. As Dr. Tator told me at one of our appointments, Sidney Crosby, who has missed dozens of NHL games over the years because of concussions, would have received roughly the same news I did after I got my first and only MRI. “The brain, ventricles, basal cisterns, and meninges are normal,” my March 24, 2017, Mount Sinai report states.
I was, in a real sense, relieved. I was grateful there wasn’t some massive tumour that had been dislodged by the impact of the car door. I was grateful I didn’t have a sneaky brain bleed. At the same time, though, fear and insecurity washed over me: Was I really part of the estimated 10 to 20 per cent of patients whose symptoms persist beyond a few weeks? “You came in one time and you asked me … ‘Am I actually this bad? How can I be this bad? Maybe it’s in my head?’ ” Dr. Curan recounted of one of our sessions. “I told you it’s not. It’s an invisible suffering.”
Beyond “Am I mad?” was another question: “Why me?” I know now that being a woman was a knock against me. Something about hormones, blood flow, the structure of the brain and vulnerability to migraines (I’d had three migraines in the previous five years, each accompanied by a visual aura). My neurologist, Marie Slegr, who started treating me in the spring of 2017, also told me that a history of car-sickness – which I have – is related to migraine susceptibility.
At the outset and beyond, doctors have to rely on patients to self-report their symptoms. “That’s the problem with concussions,” Dr. Tator says. Patients subjectively rate their symptoms on standardized tests, including the Sport Concussion Assessment Tool (SCAT), which, I would come to know, is also widely used outside the sports realm. When Dr. Curan handed me a SCAT at our first session, I thought, “But this is for athletes injured in sport. Their concussions are worse than mine.” I felt the same way when health-care providers gave me sports-centric handouts or pointed me to sports-medicine clinics. Compounding my physical fatigue was a cumulative confusion.
About a month ago, I met with Nancy Jones, a friend of a friend, who is six months into her recovery from a concussion that ensued upon fainting at the sight of blood after cutting her finger while making pancakes for her toddler. Ms. Jones, a 38-year-old law graduate whose articling year has been interrupted by her injury, is now at the confounding stage where not all days are bad but they’re certainly not all good. As we spoke over tea in a relatively quiet space in the newsroom, the look in her eyes was painfully familiar. She was tired. Fatigued, yes, but also emotionally depleted.
A week later, Ms. Jones sent me an e-mail. She said she had done a workout before meeting me at The Globe, and after we met she had been able to complete only a third of the reading she had planned to do ahead of a bar exam she was registered to write. The day, she wrote, “knocked me out,” and it would take her four days to get back to her baseline. “This is a perfect example of concussion B.S.,” Ms. Jones wrote, alluding to the tease of normalcy and the intangibility of her injury. “It all feels so indulgent, doesn’t it? I still don’t fully believe I even had/have a concussion.” Not all that long ago, her words could easily have been mine.
Ms. Jones was long overdue for a quarterback. I put her in touch with Dr. Curan.
It wasn’t until the fall of 2017 that I felt confident enough to return to the newsroom, and then only under certain conditions – chief among them, shorter workdays and a dimly lit space where I could close the door. It was emotional to see my byline in the newspaper for the first time in nearly a year.
Turns out I might have our daughter, who is now 14 months old, to thank.
In May of 2017 – soon after I found out I was pregnant – I was, like so many other women, hit with nausea and fatigue. But as the weeks wore on, and despite the fact that I’d just recently moved on to long-term disability, I also got the most beautiful gift: some relief from the headaches. Dr. Slegr, my neurologist, had predicted this. “The fact that migraine can be greatly improved during pregnancy, especially during the second and third trimesters, was something I shared with her,” she wrote in her examination notes.
It was only fitting that the best medicine was not something a doctor could prescribe. Concussions really are funny things.
It remains unclear whether the pregnancy, with its hormonal changes and increased blood flow, truly helped to alleviate the headaches, or if it was another antidote altogether that did the trick: the simple passage of time. In search of answers to mysteries like this and myriad other questions, the Canadian Concussion Centre will, in November, put on its second symposium on concussions in women and girls. (The centre also runs education and support workshops for people with persistent concussion symptoms.)
By the time I was on maternity leave in 2018, I was symptom-free and never happier. Yes, I’d had a couple of migraines, but I don’t attribute them to the concussion.
What I do attribute to my concussion journey, however, is the impetus to look up, in and out – to watch tree branches sway in the sky, notice the pattern of raindrops on a windowpane, feel the continuous vibration in my fingertips and lips. I still make a point of taking at least one mindful breath each day, feeling the air move in and out. I also have a marvellous sense of perspective: Unless it has to do with someone’s health or well-being, it’s probably not that big a deal.
It has been more than two years since that day I pirouetted in Dr. Tator’s office. I was supposed to go for a follow-up appointment before our daughter was born, but she came two weeks early and I missed it. Had I shown up, Dr. Tator tells me now, he would have stressed the importance of doing whatever I could to avoid another concussion. The harm is cumulative.
“Don’t worry,” I assured him in our recent call, half-jokingly. “I basically walk around in a state of paranoia.”
I decided not to try wake-surfing last summer. If I bend down to pick up something anywhere near a cupboard door, I instinctively put my hand above my head. I choose function over form when it comes to winter footwear (most of the time). I’m uneasy around doors. A couple of weeks ago, I considered wearing a helmet to go skiing – cross-country. I probably should have. Dr. Tator calls my vigilance “healthy” and “smart.” I tend to use words like “annoying” and “limiting.” My fear reflex is probably here to stay, for better or for worse.
When Daniel walks out the door to play hockey, I invariably say, “Have fun, play safe, don’t get a concussion.” It’s become a silly little ritual, but at the heart of it, I’m dead serious. These days, if he dims the lights or speaks in hushed tones, it’s for our daughter’s sake, not mine. I relish, now, the sounds of our home – belly laughs, movie nights and mother-daughter dance parties. Daniel is not just my safe place any more; he’s ours.
People still ask me how my head is doing. What you have just read is my cathartic answer. This essay was possible because I was able to stare at my computer screen. I was able to meet with editors under the newsroom’s fluorescent lights. I was able to assemble cogent thoughts.
Now, when I stand feet together and eyes closed, my brain allows me to be still.
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