A Note to Brain Tumour Survivors and Their Supporters

On February 25, 2015 the following post appeared on the popular blog “Humans of New York”:

“He had a four centimeter tumor removed from the frontal lobe of his brain. He cries a lot now. He never used to cry, but I’ve probably seen him cry twenty times since the surgery. He always says, ‘You’ll never know what’s happening inside of my head.’ He’s still good with my name, but he’s forgotten a lot of others. He tells the same old stories over and over. He’s best at remembering things that happened a long time ago, so I think he clings to those things.“

Reading this filled me with emotions and a call for a necessary response.

I had a brain tumor (about the size of a lime) removed from my lower cerebellum 22 years ago. A lot of what she is describing rings true for me. I was young then and traumatic brain injury research was minimal. Now, as I and the academic world have learned more, I better understand some of the symptoms I live with. This includes mass confusion and I often think that people don’t understand what’s happening inside my head.

I cry sometimes too.

What I remind myself is that while others may not understand, they may be willing to help. While this is my struggle and mine alone, that does not mean I have to go this road alone.

What I say to the person in this picture is, “this is difficult and your support most likely means a lot to him…even if he doesn’t recognize or acknowledge that now.” I know I am thankful for all the support I have and continue to receive. And I know I am not always grateful.

I know that the road to recovery is scary and difficult and I have no idea if it ever ends. What I do know is that it gets better. My brain has adapted, learned new ways of working with the rest of my body, and I am living a life I never thought I would have.