Sophie's Story

I am often brought to tears when I encounter testimonials of others’ experiences with concussions and brain injury. I cry because I feel for them and their pain, because I am inspired by their strength, and because I feel in those moments the most comforted and hopeful. Saying I feel part of something sounds wrong—this is not a thing anyone would choose to experience. But I feel comforted knowing that as much as it is shared pain and distress, it is a shared experience of survival and growth and pushing forward to find the cans in a journey that constantly pushes can’ts in your face. I feel very humbled to be writing in solidarity with people whose words, wisdom, and kindness have helped me so much.

I was thinking the other day, about how we mark our growth in years. It feels so rigid and inaccurate a measure. Growth happens day by day yes, but growth and change have become clear to me over the past few ‘years’ as anything but linear and consistent in tempo. Growth can happen in abstract chunks of time, following the ignition of a catalyst moment—some minute or hour whose impact somehow measures more than its predecessor. I have grown and changed more in eight months of being twenty-two than I have in any entire year of my life. 
I got my concussion January 26th, 2016. I like to say I lost a fight with stairs—I suppose it adds a certain level of comedy to the sometimes confusing truth that my life changed so much because of one misstep. I feel aware that this makes me a concussion ‘noob,’ and that the road ahead is long. This makes me all the more grateful for the support and wisdom of those who are months and years into this experience.

My symptoms showed within a couple days, a fact for which I am immensely grateful. I was set to leave for a semester abroad in Europe only a few days later, and I am so lucky I did not get on that plane. I am also lucky that I was forced to rest so completely that first month, as resting during that period, I have learned, is critical. I am certainly not by nature someone who slows down, but I was physically unable to do much other than lay in a dark room that first month, leaving my house only to go to the doctors, the hospital and the neurologist. 

I do not hesitate in saying this first month was the worst of my life as my injury manifested itself in relentless pain, discomfort and immense distress. ‘But what do you feel?’ This question drove me nuts, as I found and still find it difficult to articulate. To attempt: the physical experience for me included a neck injury, and constant headaches, vertigo, nausea, extreme sensitivity to light and sound, tinnitus, sleep dysfunction, and difficulty with cognitive tasks, focus and short term memory. In the first month, they were constant. Now, in my twelfth week post-injury symptoms remain constant but luckily vary in combinations and intensities. 

I knew little of post-concussive syndrome and brain injury prior to my accident and did not know about the mental and emotional toll that they can take. Now, I haven’t taken science in six years, but the neurologist explained to me that my brain and neurochemistry had been impacted and imbalanced. I was just walking up stairs. Suddenly I was/am depressed, anxious and quite frankly, often very afraid.

My limited knowledge of concussions was based on a few cases that had gotten better in a week or two and though I was increasingly informed about the large diversity in severity and length of recovery, it took me until very recently to accept the truth that my injury is going to affect life for a long time. Personally I have always found it difficult to speak of my own experiences as hard or extreme, and tend to downplay negative experiences, even to myself. I feel aware things could be so much worse for me, and I feel gratitude for all that I have. I have learned however, the importance of acknowledging and owning what happened to me. I have learned it is impossible to recognize the strength and victories, if I do not equally recognize the trauma and difficulties.

In week 8, a friend sent me an interview (check it out here) with Jane McGonigal. Hearing her speak in this interview was a very moving experience; the way she spoke about her concussion was the first time I heard someone articulate an experience so close to my own. 

In the beginning of her book SuperBetter, McGonigal talks of ‘post-traumatic growth.’ I was hearing about post-traumatic stress so often, and this concept of post–traumatic growth made me feel alive and inspired in a remarkable way. It echoed the way I spoke of my hopes for my recovery and appealed to my desire for a positive outlook. I want to have that growth. I want to get to the point where I feel the growth more than I feel the stress, and this thought is what fuels me. During this stress, I grow. I will feel better, be better, be stronger. I will be more me.

Yet, it is hard to remember that growth is happening, because stumbling through recovery from concussion looks like trying your best but still living in a body, thinking in a mind, and feeling in a heart that is so suddenly different and broken. It means having a day you feel hopeful about, but then having another sleepless night of nauseating vertigo, tears and fear. It means believing in your own strength but moments later having another breakdown. It sometimes means not being able to think, or not being able to clear the foggy haze of forgetting a word or why you’re walking across the room. 

Some days it feels like a losing battle and progress can be hard to find. It’s always there, but it doesn’t register if you don’t readjust your thinking. Being able to stand and shower and have the lights on registers to me as normal but weeks ago I was struggling to bathe with the lights off. It’s can’t can’t can’t—but goodness look where you started. Before, I was stubbornly independent, working or in school, reading and writing tons, taking transit, running, going to cafes or restaurants—a whole list of things I can’t do right now. Comparing where I was to where I am now is unproductive and unrealistic. I am trying to arm myself with the mindset and the support system I need and the doctors and therapies I require—and trying to focus on the victories, the growth and the cans. Ultimately I am learning to accept that everything is different now, but that’s okay. 
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There is not a day or night since I lost that fight with the stairs that I do not experience the physical, cognitive, mental and emotional reminders and obstacles of my concussion. I am changing. I fight to embrace the changes it is making, they are me now, it is never not going to have happened and I am never not going to have been changed by this. I am growing. It is far from being over, but that is okay. I have so much more me to become and so much better to be.

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