Two weeks ago I came down with the flu. It was one of those miserable, can’t move from the couch, too congested to breathe through my nose, too feverish to concoct rational sentences kind-of-experiences. The nasty virus made its way through our home one victim at a time, with me the last to succumb to its reaches.
As I lay there, fighting body aches that made the short trip from the couch to the kitchen feel like a venture up Mount Everest, I wondered how on earth my husband TC had survived this illness just days before. To be sure, he had experienced the same degree of misery, but unlike me, he still held polite conversations, parented our son, and even painted our bedroom while the flu ran its course.
Incredulously, I asked him, “How did you manage to function while you were sick?”
He shrugged in his typical TC, nonchalant way. “You have to understand,” he explained, “ever since brain injury, I always feel that run down and exhausted.”
I stared. “You mean, you’re in that much discomfort every single day?”
He shrugged once more. “Pretty much.”
For me, this was a mind-altering conversation. Since my husband first became injured three years ago, I have been logically cognizant of the difficulties he faces on a day-to-day basis. For most people, buttoning a dress shirt or walking the dog are not labor-intensive activities. For my husband, who suffers from weak vision and hemiparesis on the right side, every activity is a mental and physical marathon. And while I know all this in some intellectual capacity, I am very rarely able to appreciate TC’s struggle on a tangible multi-sensory level. Those who know my husband may never think twice when they see TC shoveling snow out on the sidewalk, or swimming laps with our 5-year-old at the local pool. They’re not present for the nine hours of sleep he needs to recuperate or the long hours of quiet he relishes after Jack goes to bed at night. Even I (who has been present for so much) am guilty of taking TC’s efforts for granted.
As you might already know, March is Brain Injury Awareness month. Beyond spreading TBI awareness to those outside the community, however, I’ve been contemplating how to honor this month in a more meaningful way for the people who are all too well aware of the impact of TBI. These are the survivors, caregivers, and family members – the soldiers on the frontline of the brain injury battlefield, the ones for whom life often feels like an impossible swim upstream, fighting relentless currents that too often leave us with our heads underwater.
Since his injury, my husband and I have come to agree on one point: we will never fully understand each other’s struggle in this mess. I pray he’ll never know the heartache of watching his loved one in pain or the circus of keeping life afloat in the absence of his spouse. He prays I’ll never know the anguish of chronic illness or the gut wrenching loss of my confidence and identity. And while we can never hope to fully appreciate the depth or complexity of each other’s experiences, we do our best to stay constantly respectful of the hard work that keeps us going.
This month I want to pay homage to all the brain injury superheroes out there. Your struggles may not be well understood or acknowledged by the many people in your lives, but they are appreciated here. Your journey has involved pain and sacrifices that are needlessly unfair in life. However, your willingness to show up each day is a testament to your courage, an example of your fortitude to keep moving forward. Your struggles have been unique and through them you have become brave in ways most people cannot begin to imagine. But in this community, you carry your valor quietly, as the world has not yet carved out a place for superheroes of your kind. And although you may never arrive at that brief but authentic response to “How are you doing?” there are people out there who understand that the answer is multi-faceted, ever evolving, and may even require an auto-biography to fully articulate. Similarly, in this community we understand the feelings of worthlessness, confusion, and depression that so often serve as the bedfellows of traumatic brain injury and we honor all your experiences, without shame or judgment. Your life story is notable, one worth telling, and one certainly worth listening to, even if communication is a barrier you find difficult to cross.
In short, you are among the humble superheroes of the world. Thank you for the examples of grace and dignity that define your journey. All the quiet admirers you’ve garnered along the way would likely surprise you. This month I’m honored to serve as their collective voice of admiration and to remind you that there is no courage without struggle, no victory without opposition, and no battle that must be fought alone. We’re in this together and, as a community, we’ll keep on fighting.