Brain Injury

The Invisible Truth

I’ve found a new sweetness and tenderness in my life from an unexpected source: the honest simplicity of children’s books. Both short picture books with their beautiful illustrations, and novel length stories, have pulled me in to a place where truth is spoken through the eyes of the young. I think our world needs more of that. To read children’s books on hard topics like grief, sadness, fear, and loss is to have your heart comforted like a child climbing into the lap of a loved one. Sweet solace.

Among my favourite authors are Kate DiCamillo and Jacqueline Woodson, both artful masters of poetic description. Interestingly, I didn’t read their books as a child, but as an adult. I experienced first hand the expression that you never read the same book twice, suggesting that each time you come back to read it you have had more experiences through which the story is filtered. The first Kate DiCamillo scene that made me weep with understanding was the description of the bittersweet Litmus Lozenges in her novel Because of Winn-Dixie. With that, I started keeping a collection of what I call Kate Quotes. No one else had yet put into words for me the bitter sweetness we eventually feel as we journey the path of loss.

Next to my copy of Because of Winn-Dixie is Louisiana’s Way Home, another of DiCamillo’s books that cradled my soul and nudged me towards healing and wholeness. In the process of searching for her lost family, Louisiana encounters a Reverend who she hopes can remove the curse she believes she carries. He also happens to be the first person with whom she shares her painful story of losing her family.

Excerpt from Louisiana’s Way Home by Kate DiCamillo

Such impact in the words “a relief to hear somebody call it what it was: terrible.” Without hesitating, I thought about how I’d longed for someone to call my story what it was: hard, frightening, isolating, confusing, exhausting, and yes, just plain terrible. An acknowledgement that what I lived through and live with as I support my husband and his brain injury, isn’t normal, despite how it looks from the outside. Let me be clear that I’m not asking for sympathy.

In an effort to call it what it was, I searched out the MRI CD that documents the reality of my husband’s brain condition. I hadn’t looked at the images since 2011 when we sat in the neurologist’s office and heard the diagnosis of hydrocephalus. He showed us my husband’s brain from a top down view, where the brain looks like a walnut, and how far the overflowing fluid had expanded the ventricles like a blown up balloon over the many years as his condition went undiagnosed. I remember thinking there was more fluid than brain. And then I forever blocked out the image, not wanting it as part of our reality. Survival mode will do things like that to you.

But recently I needed it, desperately. To call it what it was. I no longer wanted it glossed over, minimized, or to be told that I’m so strong, I’m an angel, or that we “just have to keep going”. I wanted to put it in the faces of people who told me he should still seek employment, those who said no to our requests for help, those who told me that fighting through it would make me stronger, and those who gave up on him, not believing he had a reason to struggle.

This is me calling it what it is. On the left is his brain from the MRI last year , and on the right is a normal brain. It’s here in black and white for the outside world to see for themselves. An irrefutable, invisible truth. And yes, it’s a relief to call it what it is. To call something what it is takes courage, brutal honesty, and commitment. But it’s so worth it. On the other side of it is freedom.