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Over the last few years, the phrase "lived experience" has been gaining traction within the brain injury community. Early on after my injury, for many years in fact, I really didn't fully understand how much my injury would affect my daily life. As the years passed, I began to better understand what it meant to navigate life with an invisible disability.
Living alongside David Grant's TBI was a treatment-resistant case of PTSD. For over fifteen years, he lived with innumerable night terror events. The kitchen calendar counted the bad nights. A good month noted three or four bad nights. A tough month, like last November, came with nineteen night terror events. Last November was as bad as it gets. Life was unsustainable… until it wasn’t.
Being mindfully aware in the present moment meant that the past no longer owned me and that there really was no such thing as the future — there is just the here and now.
I stared through a sand-crusted windshield. It was more of a film, wiped clear along the path of the wiper blades. A dirty blonde desert haze, matching the Humvee’s paint—not that weird orange-tinged tone oddly clinging to some of our vehicles.
It’s time to put a label on one of my biggest fears as a brain injury survivor: Backsliding. Over the last couple of months, I began to fear that this was happening to me until another survivor shared with me that lack of sleep exacerbated brain injury symptoms. And in two ticks of a clock, the lightbulb went on over my head.
Sometimes unexpected and unrelated medical conditions can exacerbate my traumatic brain injury symptoms. I have known this for years, but have just learned a new lesson about how true this can be.
Every now and again, someone will ask me how I’m sleeping these days. My reply has remained unchanged for several years. “I’ve not slept a full night since 2010.” — David Grant