“I was particularly riveted by the chapter on your scars. You suddenly went through this period when you had to see them.” Kit surmised that my journey was not only of healing, but also of acceptance. “Would you talk about that a little bit?”
As Kit spoke, as if on its own accord, my hand went up to the scar from my brain stem surgery. And as I started responding, I found myself running my index finger up and down the tail end of it, the part that lies below the hair line. And I realized that I still need to know that they’re there, I still need that validation.
Like many brain injury survivors, my disability is invisible. Many of us, if not all, at some point in our recovery encounter outsiders who suspect that we are over dramatizing, malingering, that in fact, we are back to “normal” but have embraced victimhood. Like many brain injury survivors, self-doubt is a constant companion. Perhaps I am an attention seeker, perhaps my symptoms aren’t quite as bad as I make them out to be. Am I just needy, whining, lowlife?
I’m one of the “lucky” ones, I have tangible evidence of my injury—the scars from my surgeries. Most brain injury survivors, many of them due to concussion, have no such evidence, no such validation. What do they do?
We were in the Boulder Book Store at a book signing for my book, But My Brain Had Other Ideas. It was during the Q&A session. I got a lot of questions and comments. Some of the comments caused me a bit of a twinge as I recalled the early days of recovery, the daily struggles, the darkness. All of the questions made me think.
Wendy, whose daughter had also undergone brain surgery, commented that brain injury survivors often do function like neuro-typicals, but what outsiders don’t see is what it takes out of survivors—after brain injury, the brain has to work harder to achieve what most people do without any side effects.
Her words resonated with me. By the end of a day at work, having functioned at a “normal” level, I’m completely drained—there’s a price to be paid. Recovering from the book event is still ongoing—exhaustion, rip roaring headaches, vertigo. Earlier today, I told a friend that I’m sick and tired of being sick and tired.
As I write this, I run my finger up and down the tail end of my scar.
Kit was right. My journey was not only of healing, but also of acceptance.
The journey is ongoing.