We haven’t disappeared. We have been looking for new solutions as we work through a very difficult cycle with Corey. There have been many, (what we call) ‘Brain Injury Day’s’.
When the going gets tough…I go searching for inspiration! Anything to help us hold on, change perspective, think out of the box, or find the words of encouragement that will help us navigate this crazy ‘new normal’.
I found that message in the following entry from one of the blogs I read…I hope Abby’s words will inspire you too, xoxo
Revised Expectations – Abby Maslin
Once upon a time I believed I had total control. I was convinced that everything in life is a direct result of choices, actions, and will. I believed in this sense of self-determination so strongly it was as if I had created an invisible (and false) veil of safety, one I believed exempted me from the less than pleasant realities of life. Maybe this is how all young people think, or at the very least those lucky enough to have experienced mostly happy, privileged lives. Or maybe it’s something many people convince themselves of — a protective measure we use to guard against that nagging inner voice that reminds us the world can be a very scary, unjust place.
In either case, there was no doubt in my mind that I was at the helm of my own life, a belief that, in retrospect, made me assertive and productive, but also terribly arrogant. Like many people, I had a vision for how my family’s life would go. I believed that through a series of smart choices and a lot of hard work, we would be guaranteed the life I envisioned. In my mind, this was a foolproof plan. Not only was I confident I had 100% navigational control, I sometimes had the audacity to judge the lives of those I deemed less fortunate. Like a lot of people, I had little awareness of my ego or the sense of entitlement that shaped my interpretation of the world.
In the version of life I had scripted for myself, there was no violent crime that left my husband, TC, in a coma fighting for survival. Nor was there a radical transformation of heart and soul, forcing me to delve into a deep examination of my character and long-held dogmas. TC’s literal injury to the head was, in many ways, a figurative conk to my own. Never did I plan to be so intensely humbled by my own former perspective of the world; but in the three years since TC’s attack, I have learned a great deal, and chiefly, I have learned what any good writer knows to be true: in life, and in writing, it is essential to revise.
Our post-TBI life is a happy one because I have learned to revise what I expect from the world and the people in it. While I have struggled to process the life-changing event that caused TC’s brain injury, my greatest struggle as a caregiver and wife has been learning to adjust my expectations of my husband. Some days he looks so much like he once did that I expect his brain will behave in the same way as well. As TC would likely attest, the trouble with making a miraculous recovery like his is that the people around you come to expect constant miracles. And it’s true. The more TC’s brain began to heal, the more I came to want and expect from him, often feeling disappointed or frustrated if things didn’t pan out according to my vision. On his best days, when his language is crystal clear and our communication easy, it’s a challenge to keep my expectations in check. I’ve learned, however, that brain injury and expectations are fluid, not fixed. No two days are the same, so caregivers must revise and adjust their expectations accordingly.
As a teacher of writing, I’ve watched kids shudder and shut down during the revision process. The notion of critically stepping outside one’s comfort zone to put forth effort into trying something a new way is not an idea they immediately welcome. Revision is tough because it’s an admission of both growth and change. To try something over means accepting that your initial beliefs weren’t fully informed, and acknowledging that there are other ways of doing, thinking, and acting.
I’ve felt happiest on the days I’ve embraced this change, willing myself into a new mindset, and stepping back to examine the wholeness of our lives, instead of remaining singularly focused on the difficult thing that befell us. I accept now that there is so much more to learn in this life and that I will never acquire all the answers. I also accept that I am not owed anything from this world, but that I have been the fortunate recipient of many extraordinary blessings. And I accept, wholeheartedly, that brain injury has been an unexpected teacher in my life, flipping my previous expectations on their heads and showing me that the only certainty about the future is that it’s meant to be revised.