I thought I understood concussion. I had played contact sports my whole life, after all, complete with my fair share of bumps to the head. A few begrudging days of rest and I was always raring to get back to the game. Until the time that I wasn’t.
My last concussion four years ago was a life-altering event. In the weeks following that concussion, I was confused, disoriented, unable to read or write, cook a meal, or even walk properly. I had a severe and constant headache, and my room wouldn’t stop spinning. It was like the world’s worst hangover that just wouldn’t quit. The pain kept me from sleeping, my eyes couldn’t track properly, I had left side weakness, my emotions were all over the place, and even my menstrual cycle became erratic. As my rehabilitation stretched on and on, I realised I was no longer capable of performing my fun, frenetic job coaching at a gym, and my dreams of playing roller derby for Team Canada were over. I continue to cope with the effects that the concussion and its recovery process have had on my body and my ambitions.
At the time of my injury, I struggled to communicate to doctors and to those around me what was wrong, and for months I was unable to access the help I needed. There was nothing I could share with them to say: “it’s like this, this is what I am going through.” Since that time, I have searched obsessively through medical literature and fiction, across movies and poetry, popular culture, science journals and historical accounts for an accurate depiction of the subjective experience of brain injury. Representations of brain injury are fairly commonplace, appearing in everything from Don Quixote to Looney Toons to The Hunger Games. Sometimes a head injury is a joke, stars circling around the head of an unfortunate cartoon cat, and sometimes a bang on the head pushes plot forward: end a chapter with sudden darkness and begin the next with our hero waking up in some unknown location, perhaps even with amnesia. It’s dramatic, it’s exciting, and the action quickly moves on, rarely examining ongoing symptoms and their impact on daily life.
In medicine, there are plenty of objective descriptions of symptoms and clinical strategies for managing concussions from a practitioner’s point of view, but few explaining how to negotiate the experience from the inside. While understanding of concussion and the resources available have come a long way, it can be difficult for a patient to know where to find useful information, especially when each brain injury is different. While there are now online resources that attempt to be a one-stop-shop for information, such as the Concussion Awareness Training Tool, people with brain injuries are not always told that these resources exist, and we might not be capable of searching out these tools when we need them most.
When the brain is injured, resources generally used for cognitive function are redirected to repair and healing. The energy it takes to perform a task, particularly a complex task, is drawn from a diminished reserve, leading to a feeling of brain fog. As a result, the concussed brain can have difficulty dealing with typically automatic processes such as filtering out background noise, coordinating movement, or interpreting and responding to speech. These tasks become much more tiring, and as fatigue increases, it becomes even more difficult to respond to additional cognitive demands.
In my own experience, these types of challenges made apparent the complex underlying processes of the brain that had previously been invisible to me. Much of our public space is not designed to be navigated by people with atypical neurology. For example, a grocery store can be a frustrating, overwhelming, and painful place, with its background music, noisy carts, bright lights, cluttered displays, and a layout that requires vertigo-inducing reaching up or bending down. I once sat on the floor and cried in the middle of an aisle because I couldn’t remember why I was there. The sensory overload unmoored my ability to function in public. Not only did I have to cope with deep shame in that moment, I also went hungry because I left without any food.
I felt like a complete headcase. Not only did I no longer feel like myself, I was also terrified that I was somehow prolonging my symptoms, that I was doing concussion wrong. This is why representation is so important: it creates the baseline cultural assumptions about an experience. Literature is perhaps the closest one can get to experiencing a concussion without actually going through a physical brain injury. An accurate description of a concussion allows individuals to imaginatively project themselves into a similar situation, promoting empathy and comprehension. Simultaneously, representing the diversity of manifestations of brain injury can reduce the sense of alienation in a sufferer. The most popular depictions of brain injury are inadequate to the task, and worse, they undermine current scientific understanding about the severity of concussion.
I have embarked on a project of writing the representation I needed at the time of my injury. A concussion can disrupt one’s internal personal narrative. Through poetry, I seek to give the reader a sample of this cognitive disruption. It is a jarring experience, and poetry is an ideal vehicle for creating this disjunctive relationship with language and memory. A sample of my concussion poetry can be found here at the Dusie Poetry Blog.
Claire Lacey is a Canadian writer currently pursuing her creative/critical PhD on the topic of brain injury and poetry at the University of Otago. Claire can be found online at poetactics.blogspot.com.
Roller derby photo credit: Steve Recsky.