I am by my canoe, having just shouldered my pack, bending to take the load, my damaged balance system trying to understand that I am suddenly bigger and a different shape with a different centre of gravity. I am planning to climb a narrow, uneven trail up and then down to the next lake. It goes better than I expected, perhaps because the weight on my back is both crushing and constant.
My brain, since my injury, has struggled with uncertainty and there is nothing more certain than a pack full of food and cooking gear pressing down on the shoulders and spine. The reality is undeniable, as is the task. The pack has to be carried to the next lake or there will be no way to cook and nothing to eat. In my worst moments in the city, a sidewalk with a gentle slope can make my head spin. My brain, overloaded by speeding cars and whizzing bike couriers can struggle to cope with even a slightly tilted surface. But the wilderness is different. I savour the stillness. My brain, with fewer moving objects to track and less motion to process, benefits from having a lighter cognitive load. Even with the massive pack on my back. My brain can’t always cope, however. I am damaged in a way that cannot be seen. On this trip, I have encountered others with more visible injuries, out in the wilderness seeking healing or defiantly demonstrating their abilities. On the shore of one lake, there was a woman in blue pants and a crisp white shirt. She was confidently striding out of the woods and towards the water, paddles in hand. She had one leg and a very efficient-looking prosthetic. On this lake, I spotted someone else overcoming different challenges. She was pale and thin, carefully wrapped head to toe in white. A cancer survivor, I guessed, keeping her distance from others. We nodded but did not speak. I am just starting up the trail when another woman comes around the bend. She has a significant pack on her back, not as big as mine but big enough that she is no doubt grateful to be at the end of her journey. We stop to swap information about the trail and the bugs. As one does. I enjoy meeting others in the backcountry, a brief connection to another human with similar passions before slogging off in search of isolation. Our conversation is short and pleasant but it’s one more thing for my brain to cope with, one more bit of cognitive load on top of the pack, the slope and the uneven terrain. We say our goodbyes. I start. I stumble. She laughs. No one in the wilderness would laugh at the woman with one leg. No one on the trail would chuckle at the woman wrapped in sterile clothing. But my disability is invisible and so she laughs. Not in a mean way. A natural, quick gulp of amusement, unrestrained. I didn’t fall. It was a slight stumble, a clumsy moment caused by a concussed brain and no physical harm was done. But the laughter stings. Still. My point here is that for people with concussions or other brain injuries compassion, assistance or even understanding isn’t automatic. People can be judged as drunk or drugged or clumsy when in reality they are simply suffering, the cause invisible. It’s an extra burden. One that cannot be easily put down.
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Photo by Anthony Quintano from Mount Laurel, United States - Punxsutawney Phil Groundhog Day 2022 Pennsylvania I have a friend who was in Groundhog Day, the classic film about a man in a seemingly endless time loop.
I lived a version of that for about three years. It was not at all funny. In Groundhog Day, every day started the same way, no matter what had gone before. In my post-concussion “remake”, every day ended the same way for me, no matter what I did. Every day, no matter how careful I was, my brain ran out of energy. I crashed. Dizziness and fatigue defeated me. I became an overwhelmed mess who talked slowly and moved slower. I lived through about three years of constant collapses, all without Bill Murray’s humor to liven things up. My brain was so easily exhausted that I had to watch a Star Wars movie at home in fifteen-minute chunks, spread out over days. And still, every one of those days ended badly. Then, roughly three years in, there was a turning point. My reverse Groundhog Day wasn’t guaranteed. The daily crashes were still likely but not actually inevitable. I didn’t see the plot twist coming. I was gradually improving. I knew that. But at some point I finally had enough brain energy that with careful management I could get through a (limited) day. The tips and tricks provided by a series of occupational therapists finally became useful. My brain was like a cell phone finally charged to the point where it could actually complete a call without shutting down mid-conversation. After three years, it was no longer true that pretty much anything was too much. I still crash. There are still many things I cannot do. And I’m always wanting to do more. But the cycle was broken and I went from often being forced to eat dinner alone to often staying at the table. I still don’t have a surplus of power. I’m not fully charged. Ever. But I’m spending a chunk of the brain energy I do have writing this for anyone who thinks they aren’t getting anywhere. Maybe you are. Maybe small gains are being masked by daily discouragement. Every concussion is different and I’m no doctor. But my brain was gradually improving, even when there was nothing but frustrating failures for years. I hope hearing that gives someone a boost. I haven’t actually been to a movie theatre since my concussion. I’m pretty sure it will be a huge challenge when I go. And when I do buy a ticket, I will limit my cognitive load that day and then spend the next day recovering. I’m waiting for something really challenging to give it a try. Perhaps a new Star Trek movie will finally be made. Or something else. I want something with an ending that isn’t predictable. I have had enough of that. There are sensors attached to my skull. More on my legs. Wires run to a device strapped to my chest. The bed is small and so is the room.
My brain activity is being tracked and monitored. I’m in a hospital for a sleep study. And despite all the sensors and wires, I start to drop off. And then I hear it. It sounds like something has fallen. Not a body tumbling down a flight of stairs this time. More like a shelf giving way and books hitting the floor. It lasts about a second. I know no one else can hear it. I know it isn’t real. It’s an auditory hallucination, a semi-regular event in the months after my concussion. It’s not scary or even surprising but I wonder if it might be an important clue about what’s going on inside my skull. So I thrash my legs a bit and turn on my side, to mark the moment when I heard the books fall. I'm pleased. I think to myself that those who will analyze the data from my sleepover will be able to see on their reports when I moved and so know when I heard the sound that wasn’t there. But no one cares. I learn later that I’m having hypnagogic hallucinations. They are new to me but a lot of people experience brief sensations, including sound, when falling asleep. The hallucinations can trigger anxiety or, in extreme cases, injuries if people are startled and leap out of bed. Nothing like that happened to me. After a few episodes, I became amused by the things that seemed to go bump and crash in the night. I was getting three a week for a while. I quickly learned to recognize them. Eventually, I am told this kind of brief hallucination, while not well understood, is usually considered harmless. And my sleep study produced nothing of value. After a blow to the head, it’s a good idea to report every symptom or issue to a doctor, of course. And I did that. But my little “sound bites”, to use a description from my broadcast career, gradually became less frequent and faded away almost completely as my recovery progressed. I wish someone had mentioned hypnagogic hallucinations to me right after my injury. I didn’t fear them. But I got excited, thinking they could be a useful sign of something. I thought they might even put me on a treatment path that would lead to a faster recovery. They were meaningless, I now know. And I also know that people with concussions have a bewildering variety of symptoms. If there is one thing that I have not stopped hearing for six years it is this phrase: “no two concussions are the same”. I was outside in the winter, balancing myself on an icy two-by-four, trying to cure my concussion.
Tennis balls were coming at me. One on my left. One on my right. I had to catch each one without slipping or using the same hand twice in a row. Every ball had to be quickly dropped into the bag I was carrying, which had to be speedily shifted from hand to hand before the next ball arrived. Plus, I had to walk the length of the two-by-four while doing all this. Falling off (stepping into the snow) meant failure. I looked pretty ridiculous doing it. However, the next exercise triggered major mockery: Jazz hands. Yes, it was called that. More about it down below. This is a good place to insert the essential reminders: this isn’t medical advice, concussions can be very different, and above all, consult a doctor. I have seen about three dozen and I will likely see more. The jazz hands exercise was designed to stimulate my peripheral vision. After many months, I was referred to an optometrist and therapist team that specializes in concussion recovery. Their tests showed (among other things) that after my injury, my brain was so overwhelmed by dizziness it had switched to a mild form of tunnel vision in an attempt to keep me upright. The plan was to change that. So I walked about my home, staring straight ahead with my hands held up near the edge of my vision and fluttering. For days. I looked like I was auditioning for a Bob Fosse play and I heard plenty from the critics with whom I live. Did it all that jazz (sorry) work? I can say that overall, the prescribed eye exercises, silly looking and otherwise, helped. The doctor and therapist were able to measure improvements. My peripheral vision became better and doing “jazz hands” isn’t tiring to me anymore. It was actually draining at first. Then my brain adjusted to the stimulation and my overall vision improved. Once again, the standard statements apply. Concussions can be very different. There is no guarantee that what works for one person will help another. It’s essential to check with a doctor. And, as a good friend of mine says, anecdotes aren’t data. Still, eye exercises did me some good and even came with a bonus. After months of work, my vision changed to the point where I actually earned a new driver’s license. Before my concussion, I had to wear glasses (“corrective lenses”) to drive. Not anymore. Tests by another optometrist verified it. But that isn’t the point of this post. That’s coming now. For years, my progress was very slow. Time was helping me heal but the standard treatments weren’t giving me much of a boost. Then my regular optometrist, hearing my story, suggested seeing a colleague who specializes in concussion recovery. Which led to tennis balls, jazz hands and measurable improvements. My thought is this. It can’t hurt to keep pestering medical people or friends or fellow concussion patients for treatment options. Keep the conversation going. Suffering in silence can’t help. Put your hands up. So to speak. I start most of my mornings listening to hit music from 1781. It’s Mozart’s Sonata for Two Pianos in D Major. My smart home device knows it as “Mozart K 448” and I tend to order it up first thing most mornings. The hope is that it might get my day and brain off to a good start.
The Mozart Effect is controversial. More than two hundred years after Mozart created the sonata in question, researchers concluded test subjects who listened to the piece gained measurable increases in spatial reasoning. I was intrigued when I came across the theory. Immediately after my concussion, I had trouble figuring out where my body was in space. Just moving around was a strain on my brain. I was more clumsy than I used to be, especially with my right hand. Loading the dishwasher was, well, a load. I was slowly getting better but I was seeking any shortcuts on my very long road to recovery. Cue Mozart. I didn’t think listening to classical music could actually harm me, so for once, I didn’t wait for a doctor’s approval. It’s now part of my morning routine. There is debate about whether listening to Mozart works and, if it does, whether it stimulates the brain in a meaningful or lasting way. Not all the discussion is clear-headed. Some have misunderstood the point of the research and concluded that children who listen to Mozart will get better scores on academic tests. Others have wondered whether Mozart matters or whether listening to any music might make a difference. Whether that’s because music boosts mood or boosts the part of the brain involved in spatial reasoning isn’t clear. I don’t know whether my morning routine is helpful. I do know I am improving but I can’t say whether a brilliant Austrian composer from the 1700s has a hand in my progress. But I don’t mind listening to a few minutes of classical music in the morning on the morning on the chance that it might offer an extra something. That’s not a recommendation. Some might find stimulation from the sonata too taxing. I know it was draining for me at first (almost everything was, for a time). If you want to do some research, this might be a good place to start. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281386/ |
Havard GouldInjured journalist/writer determined to get his life back. Or something like it. Archives
June 2024
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