Courtney Lawes after colliding with All Black Sam Whitelock during a rugby match at Twickenham in 2014. The England player had to leave the field with a concussion. Photograph: Tom Jenkins for the Guardian
The mood change did make memory lapses easier to endure, though. I had always been bad with names, but I was noticeably worse: no new names stuck. I often experienced “tip-of-the-tongue syndrome”, when I’d know there was a word I specifically wanted but couldn’t remember what it was. “Boat farm” meant marina, “salad with tomatoes, mozzarella and basil” got me caprese, and “circular reasoning where you say the same thing twice” is tautological. It was like a guessing game in which even I didn’t know the word people were trying to guess, and I played with whoever was around me until I found the word I was looking for. Viewing it as a game made it less frustrating and a little more fun, so I chose to do that.
I started writing again about two weeks after I hit my head, which is the longest I’ve gone in my adult life without writing. That diary entry shows more cross-outs and uncertain spellings than any of the previous ones. As I continued writing, the number of cross-outs and bum spellings declined. But it was clear: there was a before, and there was an after.
My personality change – the loopy good mood, the entirely unfounded sense of wellbeing – isn’t something any of the experts I spoke to run into that often. What are more common, and tend to be listed in the literature on concussion, are two things: anxiety and depression. But the brain-body connection is relevant here, too. Most concussion patients have difficulty with light and noise; they often isolate themselves in dark, quiet rooms in response. In people without concussion, this kind of behavior creates depression and anxiety. So, did the depression and anxiety come from the brain injury, or the self-imposed isolation afterward?
For a long time, doctors thought that patients needed to rest totally after a concussion until all symptoms were relieved, Leddy says. “For example, you take an adolescent athlete and tell him or her to do nothing for weeks. Well, they’re used to doing things, you know, being at school,” he says. “We know that if you take someone like that who doesn’t have a concussion and tell them not to do anything, they get symptoms. They get anxious, and some get depressed and irritable.” That’s why concussion patients are encouraged to get back into activities when they start to feel able to, and to take it gently, he says. “We think that’s a better way for the brain to recover.”
The symptoms can come from other places, too, former NFL player Ben Utecht told me. He’s the author of a book called Counting the Days While My Mind Slips Away, which he wrote in order to preserve his memories. He had had five documented concussions between college football and professional play. Recovery was different each time, though he never experienced chronic headaches. Light sensitivity, though – that he remembers. “The consequences I faced got worse with each concussion I sustained,” he told me. After the fourth concussion, he was diagnosed with amnesia. That recovery process was different because it was more severe.
The biggest changes that concussion caused for Utecht were cognitive: he struggled with the skills we rely on to manage time and pay attention, called executive function, and his memory deteriorated. When Utecht joined the Cincinnati Bengals, learning their offensive system of play was even harder. He received his final concussion during training in 2009; after that, he ended his football career. His mood tanked: he was depressed and anxious, and his patience was nonexistent. “But I had just walked away from a game I had played for 20 years,” he said. “How much of that is just life?”
What improved his mood, he told me, was an intensive brain-training programme. He describes cognitive fitness training as “my miracle story”. While he had taken it to boost his memory, he discovered he was less irritable as his memory improved. Having a hard time remembering his calendar, remembering names and remembering the right words made things more frustrating. “I think that frustration plays a role in stress, and lack of patience,” Utecht says. “Because nothing else changed in my life but this cognitive training.”
There is no treatment for concussionexcept for patience and time, but people seem not to believe that. Well-meaning friends suggested I supplement with omega-3 fatty acids and eat extra protein. There is no evidence that either makes a difference for concussion. Some people recover quickly, taking only days to feel normal. About one in five concussion patients take weeks or months to recover. I was one of those patients. How severe the injury was has little to do with how long it takes to recover; women, younger people, those who’ve had concussions before and people with other brain disorders are more likely to take longer, according to Leddy’s research.
“I always tell my patients that I don’t have a crystal ball,” says Alicia Sufrinko, a concussion specialist at University of Pittsburgh. “I’m not going to be able to forecast this.” Some people have stronger systems for balance than others; some have better visual systems. But the wider environment also makes a difference, she says. Social factors matter. Loneliness and isolation make recovery harder.
I didn’t lack company, but I had a hard time staying awake to hang out – I spent most of the first week after the injury asleep. I still had the headache, and being asleep meant I didn’t feel it; it was my constant companion for a week. But also, every time I woke up, I felt a little better: my balance had improved slightly, for instance, and it was easier for me to think. For the first week after the crash, I kept the curtains drawn in my apartment and didn’t turn the lights on until I absolutely had to.
Even for people who feel normal, things aren’t back to normal in the brain, Harvard’s Mullally tells me. Studies in humans and in animal models show unusual patterns of blood flow in the brain persist for a month. Gentle cardio exercise – such as walking – can help improve it. A concussion patient shouldn’t go back to full steam ahead immediately, but neither should they wait until they are well to begin resuming their lives, he says.
Even after the headache finally vanished, bright light and loud sounds could trigger smaller, migraine-like ones, so I wore sunglasses every time I left the house. I also carried earplugs with me, just in case. Before the crash, I hadn’t noticed how loud everything was; now I was painfully aware. Coffee shops (high ceilings, cement floors and exposed tile), airports (high ceilings, hard surfaces, intercoms, inconsequential beeping), and public transit (the screeching of a train on the track) all guaranteed headaches. The sensitivity to noise lasted for about three weeks, and it was isolating. I often left the apartment with earplugs in. The world isn’t designed for brain injuries. Basically, Mullally told me, almost everything is brighter and louder than we realise. Our brains filter a lot of stuff out, but my brain couldn’t do that filtering.
After a week in bed, I got restless. I started with a half an hour of walking, and when that didn’t make me tired, I moved up to an hour. Doing too much, of course, could mean a headache. That was the worst period of my recovery. By the second week, my black eye was gone and my lips weren’t split anymore, but stairs and curbs – anything that required stepping down – were still terrifying. I didn’t feel normal, but I looked normal. And that meant people treated me like I was normal. Our society really isn’t equipped for people with brain injuries, which are real but invisible. Even though I knew my balance wasn’t good enough to stand on public transport, I was scared to ask for a seat on a crowded train. An injury no one can see doesn’t inspire sympathy.
After a month, I felt confident enough to go back to yoga, where I discovered my balance was still bad; easy one-legged poses I had considered the base of my practice were gone. I could walk and even bike just fine, but the subtleties of positioning my body in space hadn’t returned.
That was also around the time I went back to work. I still got tired quickly, and my day often ended earlier than I wanted – usually with a headache. But working helped with my memory, too. Things that had happened to me before the concussion still had a patina of unreality to them, because I couldn’t feel the memories. I quickly discovered that while the content of my memory was intact, the emotions associated with the memories were gone.
Fortunately, memories aren’t static. Every time you or I recall a memory, we repaint it in our minds. Our memories change every time we pull them forward. And so, back at work, I began to recompile memories of my pre-concussion life. After a few weeks, most of my memories again had emotions associated with them.
There were the little victories. The first day I was back at work, I told a writer her story had an unclear antecedent; I was immediately filled with glee that I not only had noticed, but had selected the right word. Something in the familiar process of editing had called them forth – and remembering them was akin to finding an unexpected $20 bill in an old pair of jeans.
There were also little losses. For example, it became apparent, once I was back at work, that my attention span wasn’t what it had been. This is actually common in concussion patients, says Sufrinko. It’s related to the problems with vision, which makes sense, since attention and vision have a lot to do with each other. Vision steers attention in ways most of us aren’t aware of, she says. “If you’re daydreaming and you’re off in your own little land, and then all of a sudden you realise you’re not paying attention, you also realise that visually you’re not focused,” she says. “People with visual problems lose their attention a lot.”
But this distractibility also faded. My balance improved. Finally, the only thing left was fear. For weeks, sound and light gave me headaches. When it stopped, I still avoided music, TV and movies. I felt actual dread about them. I worried I’d screw up something serious at work if my attention drifted. And steep downhill slopes or uneven stairs filled me with gut-level terror. It didn’t matter that I navigated stairs and slopes as well as I had before. My confidence was gone.
I had learned to avoid certain things, I realised. A month is plenty of time to be conditioned to fear my headache triggers: complex tasks, sound, bright lights, tests of my balance. Was this was the anxiety that had been mentioned in the medical literature? But my fears were conditioned; I had learned to fear The Headache. That was good news, I figured, since conditioned fear could be extinguished. The trick was to re-expose myself to the things I now feared, starting slowly and gently: Bruce Brubaker’s Glass Piano. Half a television show. A yoga class. Backpacking for days in a redwood forest on a mostly downhill route. Writing this article.
Structurally, as a writer, I want to put some kind of moral here to send my reader off happy. I actually spent weeks thinking: what is the lesson? As far as I can tell, there is no lesson. Brain injuries happen for no reason, after all. Even when I found it difficult to think straight, I didn’t feel much of a loss. In any event, I have bought a new bicycle and a new helmet. I’ve been riding my bike to yoga class for the last few months, and I have successfully arrived every time.
Main illustration by Guardian Design/Getty
This is an edited version of an article that originally appeared in The Verge, published by Vox Media.
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