A week ago my phone lit up with a panicked message from a fellow caregiver.
My husband’s neuropsychologist just used the words, “He’s not getting any better.” What am I supposed to think?
As I stared at my phone, I’m pretty sure I let out an audible, “Urggggh,” in solidarity, a thousand little conversations during the course of TC’s recovery now rising to the surface of my brain. I have immense gratitude for doctors, but sometimes I wish they would choose their words with more care.
I thought for a moment, then texted back the only question I thought was relevant.
Well, do YOU think he’s not getting any better?
In the throes of TBI, when there are numerous medical opinions and uncertainties to weigh, it’s easy to forget that we, the people on the inside, might have some insight of our own about our situation. I know from experience how easy it is to be swayed by the offhand remarks of medical professionals. There had been times when comments tossed carelessly into a conversation by an outsider have stirred such vigorous reactions that I’ve been unable to let go for weeks. Take, for example, the room sitter during TC’s stay in the hospital.
“He’ll never use that arm again,” she confidently remarked to one of our family members as TC lay there listening. She was referring to his right arm, in which he suffers from hemiparesis as a result of his left-sided injury. While I was merely infuriated by this woman’s insensitive and professionally inappropriate remark, TC was hysterical. Although he couldn’t verbally communicate his panic, his eyes widened in horror as he began practicing his OT exercises. The room sitter was completely oblivious to TC as a real person. To her, he was just another nameless patient, a quiet body occupying a hospital bed.
If I didn’t know this before falling headfirst into the world of aphasia, words are important. So too is the way that we deliver them. One of the best professional texts I’ve read as a teacher is The Power of Our Words by Paula Denton. And while this book is intended to help teachers more effectively communicate with their students, the book’s overarching message applies to people in all kinds of situations: We must be careful with our words. We must craft our messages deliberately and responsibly.
I’ve been thinking about messages a lot lately - how some messages stick to our brains like superglue while others have no staying power at all. Sometimes with TBI it seems that the negative messages are the ones with most impact, the ones that often contain, “Keep your expectations minimal,” or “There’s nothing you can do,” or one of my least favorite messages since TC’s injury: “Recovery takes place in the first 6 months to a year,” (which may not sound inherently negative, but nonetheless creates massive and unnecessary anxiety for everyone involved).
Doctors and therapists are stuck between a rock and a hard place. I get it. Offer too much positivity and create false hope. Steer too negatively and crush people’s spirits. I don’t envy their position. The most compassionate doctors we’ve encountered are the ones who refrain from saying too much at all. While they run the risk of coming across as cold or aloof, I have to assume these doctors realize what all of us in the TBI world come to understand at some point: it’s all just so uncertain.
Not one of us can predict with any degree of precision what is possible for someone with a traumatic brain injury or exactly what life will look like after. What we can exercise control over, however, is the way we communicate about it. And communication works in both directions.
Now that we’ve reached the point in TC’s recovery where most of our days are spent outside the doctor’s office instead of inside it, I find that we are the ones responsible for communicating clearly about TBI. To help people understand the experience of living with such an unusual and permanent injury, we must learn to choose our own words carefully, instead of relying on manufactured default responses such as, “Oh, things are getting better.” These responses do a disservice to us all and often prevent people from being able to offer help in a meaningful way.
Yes, things continue to get better over time, but what I’d prefer people to know is that it’s fragile. The “new normal” sure beats the early days of TBI, but easy is not a word I’d use to describe it. And when people smile hopefully at me and say, “Isn’t he pretty much back to his old self?” I feel a temptation to give the most pleasing response; a temptation I'm sure many doctors struggle to resist. But then I ask myself, how will people ever understand the complexity of TBI if I don’t communicate honestly?
At home, honesty gets me in a bit of trouble sometimes. When you’re communicating about TBI with the person who has one, you have to be extraordinarily careful. My husband doesn’t mind talking about his injury, but he certainly does mind when he feels it’s the only topic of conversation. Likewise, he can get extremely frustrated when he feels people are pinning his every step or misstep to his brain injury.
“Not everything I do is because of my brain injury!” he has said exasperatedly on more than one occasion.
When TC gets frustrated, I realize how important it is to step back and examine my choice of words and phrases in the conversation. Usually, when he thinks I’m picking on him, it’s because I haven’t done a sufficient enough job of communicating that my concerns are deeply rooted in my compassion. Very rarely do I choose to address a mistake he’s made because of annoyance or inconvenience. More likely I’m bringing it up because I’m worried – worried he’s overly fatigued or that I’ve put too much burden on him.
Talking with the person I love most about an injury of such significance and magnitude means that even the most benign conversations have to be crafted with precision. There is too much room for sensitivity and misinterpretation. It’s a fine art, learning how to speak and listen with both care and caution, but in the world of brain injury, our words matter. And they most certainly carry weight.