This is what I’ve come to understand and what fuels the endless empathy for my husband’s efforts to stay connected with me. There’s a common conundrum when an injury makes you feel trapped inside your mind. You have thoughts and feelings that you are desperate to share but can’t muster them all together to clearly articulate them. And so you are silent, but inside your mind is a flurry of jumbled, half formed ideas desperate to be heard.
When my husband was years further along in his recovery, he could finally gather these words and began to open this world that he had boxed up. His words have re shaped how I view those dark years of ours. But how I so wished I could’ve understood it then in our darkness. He continues to remind me that in all those years we lost, he never stopped loving me. But that’s a whole other story to tell.
My wish for you, my reader today, is that in the absence of the words you wish to hear from your injured spouse, that these books might help you to understand their world and just how hard they really are trying to live their life with you. And I also know that it can be hard to even be asked to understand them, because we, as the spouses who carry on with supporting our family, are so often forgotten and cry out to have our plight understood. I really get that. But understanding his struggles was the unexpected path to feeling understood myself.
The first book, “Neither Married Nor Single”is written by psychiatrist Dr. David Kirkpatrick, who tells the story of caring for and navigating the changing relationship with his wife when she is unexpectedly diagnosed with dementia. While it’s meant to help the readers whose lives are impacted by dementia, many of the challenges of having a spouse with a brain injury are easily relatable. It was the first honest account I’d read of the limbo land that we spouses find ourselves in. Yes, we are married. And we love our spouse. But no, we don’t have the same equal partnership anymore. The injury has eroded that equality. And so we feel single. And alone.
It was when I read his wife’s journal entries as she began her decline into dementia that I finally got a glimpse into how he experienced the world as a busy, confusing, and overwhelming place that always taxed his energy. A simple task like a trip to the store for two or three items took extreme planning and courage. I snapped photos of page after page, and wrote out passages that finally gave voice to my private experiences of feeling single in my marriage, something I had previously felt so wrong to feel. It was truth, and not just mine anymore.
The next two books are unique in their first person a perspective of life after a concussion and a stroke. It’s unusual to find such detailed and articulate explanations from the brain injury survivor, told in their own words, for the very reason that an injured brain often struggles with the organization and expression of complex ideas. Each time I read passages in these books I am simultaneously saddened and proud of my husband’s efforts to stay engaged and active in our life. Their stories helped me appreciate just how far we’ve both come, and the depth of our shared experience. If you’ve ever asked the question of “ is it them or their injury?” as I frequently did, these stories will help to clarify that distinction for you in a neutral, safe way.
“The Ghost in My Brain” by Clark Elliot is rich in minute detail of daily life after his concussion. A university professor, Elliot offers first hand documentation of his symptoms ranging from loss of time awareness to loss of balance. He explains how he tried to compensate for all his symptoms, hiding them to all but the untrained eye, and leaving him exhausted. I sighed deeply in relief as I read his battery analogy that helped me understand how my husband could behave so differently despite apparently doing the same activities!
Lastly, “Tell Me Everything You Don’t Remember” by Christine Hyung-Oak Lee is a deeply personal account of her life after her stroke at the age of 33. A writer before her stroke, Lee takes the details of her new life and pieces the patchwork together with deep emotion and deftness. She spares no truth in relating the injustice of the limitations of her new brain. And yet it’s a story of the healing journey we all must travel, whether we are the injured survivor or their partner. Her words reach our soul and our desire to be whole and to be understood.
These writers have each been courageous to share their stories, knowing that the road after a brain injury is often a lonely journey. Only those who have walked it before us can really understand. But we all need people walking beside us too. Maybe these three books will be a companion to you on your journey.