There’s a lot I didn’t notice about my husband a few years ago – the way he moves his arms when he walks or holds his razor when he shaves, the way he organizes his wallet or sorts laundry or returns voicemails. For seven years, I just wasn’t paying attention to these things. My husband was a grown man leading an independent life. There was no need to observe his every move.
Then came brain injury. And every little thing TC did or said or forgot or struggled with suddenly went under my microscope. I was a probing scientist, and he was my subject. It’s something I remember being warned of at the beginning of my journey—before I was even sure TC had a shot at recovery. A friend in the community wisely remarked, “Abby, you’ll never look at your husband the same way again.”
It took me some time to learn what she meant – that brain injury would become the lens through which I viewed everything: our circumstances, our future, myself, and especially TC. I couldn’t have known back then how difficult it would be to see beyond the injury, to the man inside. After all, how can one reasonably separate a person from his or her brain? They are one in the same – person and personality.
The other day my husband got in a small fender bender on his way to the movie theater. Fortunately, everyone involved was fine, and the car suffered only a small amount of damage. My first question to TC, of course, was “What happened?” But even as he explained the whole ordeal, the confusing turn lanes, and the apologetic other driver, I realized the details didn’t matter. From the moment I heard the words “car accident,” I had already decided he was at fault.
Anytime in the past four years that TC has forgotten a task, misread a text, gotten lost driving, or made any kind of mistake, my mind has attributed it to brain injury. There have been days during our TBI journey, I would ask myself a hundred times over whether TC’s behavior was a reflection of the real TC or the consequence of his brain injury. He couldn’t do something as simple as picking out a button-down shirt without me wondering what part of his brain was responsible for that choice. And in the process, I’ve lost sight of two really important, explanatory facts: no one is perfect and all humans make mistakes.
Even if my husband hadn’t suffered a blow to the head in 2012, it’s incredibly likely that he would’ve misread Google Maps, forgotten to pay a bill, or even gotten in the wrong turn lane while driving at some point over the course of his life. Some aspects of his behavior – like his aphasia or propensity to fatigue – are clear hallmarks of brain injury. But not everything is.
As caregivers, we have to tread very delicately in interpreting our loved one’s behavior. When our default assumption is to blame brain injury, we run the risk of creating self-doubt in the survivor. Mistrust breeds mistrust. So, if we cannot trust our loved ones to make sound decisions, how can they trust themselves?
Pointing the finger at brain injury also creates conflict and feelings of defensiveness between caregivers and survivors. No one wants to live under the microscope all the time and I know I’ve frustrated TC with my inability to give him both space and the benefit of the doubt.
It’s tricky, of course, because sometimes brain injury is to blame. And sometimes the consequences of a simple mistake are significant, such as losing one’s medicine or forgetting to turn off the gas burner. I’ve had enough conversations with other caregivers to appreciate that brain injuries run the gamut of severity and that some survivors really do need 24/7 observation.
The best I can do in my own relationship is try to remember the philosophy that also guides my teaching life: avoid snap judgments. I’ve had many experiences teaching that one kid who always breaks the rules or stirs up trouble. And just when I think I can predict that child’s next move with certainty, he or she does something that humbly forces me to revise my thinking. Teaching, like caregiving, is hard work.
Sometimes we get so bogged down in the small moment-to-moment decisions, that we become blind to the big picture. Just as kids and survivors err, so do we. And the fairest, kindest thing to do sometimes is to pause, ask questions, and remember our own human fallibility too.