It’s hard to believe it’s been more than four years since I became a regular contributor to Brainline.org. Every month when I sit down to write, there is one question that guides me: what do folks in the brain injury community need to hear?
Often times I feel poorly equipped to try to answer this question. My family is five years post-brain injury and while TBI is an ever-present challenge in our lives, we have been enormously lucky to have returned to a lifestyle not so different from the one we enjoyed pre-injury. The same is not true for everyone I’ve met along the way. For some, relationships have crumbled. Illness abounds. Recovery dawdles forward microscopically, creating frustration, impatience, and fear for the future. Each injury is different. Each life is different. Sometimes the task of speaking to the diversity within the TBI community is daunting and I’d be content just to pass the mic.
But over the past few weeks I’ve been thinking a lot about what led me to Brainline.org in the first place. I first discovered this website as a reader, not a writer. It was about six months after my husband TC’s violent assault and I was doing what I always did late at night: conducting internet research on brain injury. Most of my inquiries went nowhere, or rather they went to medical links and fancy statistics and generalized information that I couldn’t quite figure out how to apply to my own life. What I was looking for was something else. Something I hadn’t quite defined for myself. Something that spoke to the human experience of watching a loved one suffer through brain injury.
Six months into TBI, life was pretty grim. TC had just relearned to walk, but his communication skills were greatly impaired, limited by severe aphasia. We were both unemployed, living in a tiny, rented cottage hours from our home in Washington, D.C., and doing our best just to make it through each day. Looking back, I can see with clarity that it was the darkest time I’ve ever walked through, but back then, I didn’t have the luxury of deep introspection. I wanted – scratch that – needed comfort. And I needed it from someone who understood.
And then I came across a video of Rosemary and Hugh Rawlins talking about their brain injury journey. Two people who had walked the hellish road of recovery together and made it out alive to tell the story. Their marriage had survived. Their children had survived. It hadn’t been easy, but they hadn’t folded their cards and resigned from life. In that moment, it seemed possible that with grit and patience and focus, we just might make it too.
I’ve known Rosemary for years now, but I’m not sure she’ll ever understand how grateful I am for the hope she inspired in me when she made the courageous decision to tell her story. I was desperate to believe in the possibility of a happy ending, and even though there was no guarantee my story would turn out anything like hers, her life was evidence that it was possible and that alone filled me with determination.
So what do readers in the brain injury world want?
I can only guess that like me; they want it all. Practical solutions for how to help our partner and ourselves. Resources and references to connect us to the world’s experts. A place to vent. A place to grieve. A place to interact with people who “get it.” And above all, a place to be human, where we don’t have to pretend to be anything other than our messy, hurting, hopeful selves. Where we can feel validated because every experience counts and every emotion is honored.
As a blogger and a speaker in the brain injury world, I am often asked my advice for specific TBI problems: where to go for speech therapy, how long it takes for a survivor to regain specific skills or awareness. And every time a question comes my way, I feel a deep longing and responsibility to be able to offer the perfect answer.
But the truth is, I don’t have them.
I am not a doctor or a therapist or a researcher or a clinician. I am you. Someone walking the path. Someone living with fear and uncertainty about the future. Someone who has felt the burning scald of loneliness, the bitter sting of exclusion, and the unraveling ache of sadness. Someone who, despite all the challenges, is blindly hopeful, who treasures every happy ending and hard-won battle. Someone who will never stop believing that there is life after brain injury if you’re willing to reinvent yourself.
So, readers, what I want you to know this month is this: I don’t know the details of your story or the injury that has transformed your life. I can’t offer you certainty or brilliance or solutions. But I care. And I will always do my best to keep it real for you. There is no type of darkness on this path that ever merits shame. And we don’t have to use platitudes to make it easier for others to digest. Brain injury is hard. The best gifts we can offer each other are honesty, truth-telling, and the wisdom of our own experiences.
This is a place where we can be real.