“The Ghost in My Brain”

I had the intention and goal of finishing a book titled, “The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get It Back,” prior to my first appointment at the Mind Eye Institute back in August, however, this was not fulfilled due to my persistent symptoms. I finally finished this book which I would like to spotlight. This book encounters Clark Elliott’s personal TBI recovery. It is raw, analytical, and will leave you speechless countless times. It entails the ghost of who he once was following his TBI and how it returned.

I first learned of this book in 2019 as I attended a TBI support group. It was included in the presentation by my neuro-optometrist at the time. It was on my list of books to read, the list stacking up as I had and have not been able to read like I used to. I was reminded of this book after I scheduled my first appointment with Dr. Zelinsky at the Mind Eye Institute, and made it my goal to finish it prior to our trip to Chicago, because it was the work of this doctor that turned Clark’s life around.

For other concussion and brain injury sufferers who feel isolated, misunderstood and alone, this book can be very beneficial to you. And for the loved ones of those suffering, this may offer you more understanding to the complexity of the injury and experience. Only a few pages in, I was brought to tears as I had witnessed pieces of my own experience flash before me like a film reel. I only wish I could have read it faster! It’s a frustrating thing – having the desire and passion to do so much but my brain won’t let me.

The truth is, we don’t always stop to appreciate just how miraculous the human body is – the intricate functions and systems of the brain that allow it to run and just how much we take for granted on a daily basis. For me, I took so much for granted and it fully hit me when those important systems we don’t stop to think about, stopped working. 

This injury led to an identity crisis but it was interesting because it wasn’t just about losing my job, purpose and normalcy; it was about the overwhelming feeling of losing myself. It was as if I left myself there on the ice that day. It led to a great reflection about identity and how we identify ourselves and determine our self-worth by external entities. And for the first time, it really made me stop and think about what forms intrinsic identity and self-worth. But it seems in our society, we are defined by these external entities such as sports, occupation, school, etc.

I fully realize from this experience the magnitude of the societal misconception of brain injuries. I think the invisibility of the injury plays such a huge part in this, but also even thinking back to my hockey career the culture was such a way that head hits weren’t taken seriously, and we would do everything in our power to cover it up, downplay it and pretend everything was fine. I risked my brain – my own personal health – to not let my teammates down and to not be viewed as weak. That certainly caught up to me. While the awareness has come a long way over the past several years with the incidence and concerns arising in sports, there is still such a long way to go. 

I have reflected on all of the providers I have seen in this span of time – the ones considered experts – who dismissed me and my experience and unintentionally sabotaged my progress. It ultimately led me to feel like I had to downplay and belittle my symptoms too which led me to feel very isolated and alone – like I had to fend for myself and do this alone.

I deeply relate to Clark’s experience in his book because just one of the (many) things that stood out to me was the meticulous documentation of his experience. From the first days following my impact to this current day, I have documented everything I have experienced like a mad scientist, looking for clues, trends and patterns that would help me get back to…me. Because out of desperation, I was longing for the feeling of being whole again. The truth is, it was such a deep longing that I had forgotten what that looked or felt like anymore. Because on the trajectory of my life, there was suddenly a tick mark on my timeline at the moment of impact that said – October 13, 2018, lost humanness.

The coolest part is that I am finally gaining that back and I am very confident in the power of neuroplasticity, the brain’s way of healing itself. I am determined to prove all the doctors wrong who told me I am stuck like this, that I may never be able to work in medicine again and to accept this as my “new normal.” 

I have been inching in this recovery over the past three and a half years. It all adds up even when you can’t see it. Now, it is a feeling such that I am getting closer to myself, as if a slow reunion is taking place. If there were a spectrum of longing, from who I once was to now, the gap seems to be getting smaller and closing in. Sometimes, at random, I burst out into tears because despite the difficulties in the transition of re-wiring my brain, it feels new and comes with a delightful curiosity as if I am experiencing things for the first time. 

Maybe, because I have been living in this dysfunctional state for so long, it feels like the first time though it is really just what it feels like to be getting closer to functioning properly – to be whole. And that is a feeling I had forgotten. 

I know the ghost in my brain is returning, and I have so much yet to create in this life.