It’s been six and a half years since I began this brain injury journey. Or, to compute, 2,372 days, 56,928 hours, 3,415,680 minutes. And over the course of those days, I estimate I’ve written nearly a million words on the subject. This math astonishes me. It is a reminder of the power of time, the degree to which our lives can transform if we simply manage to survive the ride. As I think back, I take pride in each of those days (the bad ones included), remembering too vividly a time in which I was convinced we couldn’t make it at all.
The challenges that define our lives these days hardly feel blog worthy. My husband, the TBI survivor and once hot-shot renewable energy consultant, is now a renewable energy consultant again. I, the TBI caregiver and former fourth grade teacher, am now a fourth-grade teacher again. These days we are the parents to two young children, ages 8 and 2, and we spend our days like most working parents: tired and overextended. It’s a gift, to be living a life so outwardly similar to what we were living before, but we both recognize that it will never feel the same. Life after brain injury is like living in technicolor: the grass smells ever so sweeter, the pain lands ever more sharply, and the edges of this new world we’ve created for ourselves are defined ever more crisply. This morning we chuckled at our agreement that we oscillate between feeling like young children and the oldest 36-year-olds in the world.
There is no middle in the “new normal.” We ride the highs of life with an enthusiasm and passion foreign to many adults. Likewise, we experience the lows with supreme morose. We feel an inextricable connection to all mankind at the same time that we cautiously wade into the news of current events. Every injustice in the universe feels personal. Every ounce of grief lands squarely in our souls. We feel this connection because this connection is real. It’s the philosophy that guides our lives today: that we are all one part of a greater organism. That what happens to you, happens to me too. That it is our responsibility to care because, me and you, we are the same.
This is the long haul: the journey of the family changed by brain injury. It is a world that exists beyond the initial trauma. As my favorite writer, Elizabeth Gilbert, once put it, “Trauma is the experience of your soul feeling appalled.” And so it was, the morning that I discovered my husband missing, nearly dead, that my soul became appalled by an experience I could never have imagined. Just as I couldn’t imagine a universe that would conspire to make my husband a survivor of violence, neither could I have imagined the life lessons that would follow. As I make my way through the world, a teacher of children with disabilities married to a man with a disability, the lessons present themselves with frequency: forceful, persistent reminders to live this life well, to embrace the peaks and valleys with unrelenting fervor.
You see, this right here, this is what we get. A chance to walk through the darkness in search of the light. The chance to touch both – the deepest wells of grief and solitude, the highest peaks of joy. We were never meant to live a life in the middle. We were always meant to be explorers.
After one million words on the subject of brain injury, I feel very nearly ready to retire my pen. I have written one story, the truest, most vulnerable story I could tell of the path that led us here, and now I am ready to live another. I am ready to settle in for the long haul, that exquisite, unimaginable journey forward.