The Power of Our Words

The Power of Our Words

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.

Comments (10)

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This issue has been probably my biggest complaint when dealing with my husband's TBI.  Because of the severity of his injury, and the extreme build up of pressure in his skull and the damage showing on the CT Scan, the doctors in the ICU continually gave me extremely dire prognoses.  He wouldn't survive, he would be vegetative, he would never feed himself, he would never walk, he would never talk, etc.  After a month in ICU, they gave up and advised me to do the same.  I refused to give up hope and was willing to accept the outcome whatever it may be.  Within a week of them "giving up" and stopping anymore damage control treatment and allowing him to wake up and recover on his own, he opened his eyes and began the process of recovery.  A week after opening his eyes, he sat up with help, was able to indicate "three" with his fingers in response to a question where three was the correct answer, and puckered up for a kiss when I leaned over to say goodnight to him.  Now, one year later, he has progressed to the point where most people when meeting him for the first time, don't realize that he has had a brain injury.  After a while in conversation they may wonder, but it's not readily obvious.  I have a lot of anger towards those doctors, mixed in with my gratitude for them for saving his life and probably minimizing the additional damage that could have occurred during those first weeks.  I realized that they have seen a lot of sad stories (unlike my positive one), and have had a lot of angry families who weren't willing to accept their loved one in any condition, but I wish they could have been a little more positive when I let them know that I wasn't giving up hope.

On the other hand, most of the nurses and physical therapists in the rehab hospital and outpatient rehab were extremely positive and while offering realistic outcomes always coached them in the idea that this is what happens "often" but is not always the case, good or bad.  They promoted the thought that every case is different, and you worked with what you had and went from there.  I've been extremely lucky in that my husband amazed even these optimistic therapists and caregivers in his rate of recovery, and all the abilities he has been able to recover.

The other area Abby mentions, the words we use is something I've incurred a lot of stress over.  From the very beginning I have been very careful about what I've said in my husband's presence, often talking to doctors and nurses outside of his room to avoid him hearing things he was not ready to hear in the early days.  Some say that the patient should be aware of everything that is going on, but I truly believe based on things my husband has told me, that at certain points in his recovery he just wasn't ready to hear the truth of his condition.  He still struggles with not wanting to here details of how bad things were in the beginning.  He's more focused on what is in the now.  The stress of watching every word you say is very wearing, though. Even now, because of his ability to take offense at imagined meanings to things I say, I have very little relief.  I feel most of the time, that I am not allowed to talk for fear of upsetting him, yet spend most of our time together listening to him talk in extreme detail, repeating things he has told me day after day after day.  Not because he forgets that he's told me before, but feels it necessary to make sure I haven't forgotten any detail myself.  His self esteem is so fragile I cannot respond to him the way I would a healthy person.  I struggle to find the proper way to help him when he uses words that don't make sense so that his brain can learn to "attach" to the words that he actually means instead of the incorrect word he said.  I have never been particularly good with expresssing myself with words anyways, and the "Power of Words" and word choices has never been so clear to me as it has been in the last year.  I will be sure to look into the book "The Power of Our Words" for more insight and help, as I've found books to be a great source of help in the day to day isolation of being a caregiver.  Another TBI related book about the subject of words is "One hundred names for love" by Diane Ackerman.  It's a memoir about this writer's experience as a caregiver for her author husband after his stroke and dealings with extreme Aphasia.

I sustained a brain injury after being a physician, medical school teacher, and researcher for thirty years. Post injury, my medical career ended. What I have done is write what seems almost like a required right of passage for brain injyred, I am writing about my experiences. Thank you for your wise comments and very good advice.

I haven't read Paula Denton's book on the power of our words but we have to communicate with TBI patients in language that builds the patient's self-esteem yet provides honest feedback-that's a tough balance. I like a book that I used when I taught medical students how to communicate with their sick patients, It is by Letty Pogrebin, " How to be a friend to a friend who's sick." In my search for resources for TBI patients, I found You-Tube, tapes and books I'd recommend for caregivers of patients with a TBI. There also is specific family training given by the military but I haven't attended any of these seminars. I found participation in a peer support group invaluable. Learning from fellow TBI patients in a facilitated environment was very helpful. Regardless of the path, there is a lot of fine educational resources for the caregiver and the patient. Dr. G

Ambiguous optimism runs verbally rampant in TBI rehab. 

Very well said. ;)

As an OT I think you are absolutely correct. There is a fine line between being positive and hopeful for full recovery and also being realistic not giving false hope. I do find that people (teachers, therapist, anyone working with other people) often do not think of what their words can do to a person's spirit. I think you can be realistic but hopeful & supportive at the same time. Those in the business of caring for others or helping others should never underestimate the power their words and actions have on another.

QEEG, Neurofeedback therapy is used to diagnose and treat by the U.S. Military now. Harvard Research backs it as well. 

Your words capture the essence of my continuous struggle to be supportive spouse, caregiver and daily living therapist for nearly 10 years with my husband who has an acquired brain injury. Thank you! Words are important!

Thank for your positive and realistic insight of living with TBI. It's very humbling to remember to be mindful and understanding. All those suffering TBI and all communication problems.

As a caregiver to a 56 year old man who got his head injury at 5 years old, I am here to tell you that amazing leaps in recovery can be achieved even after all that time. I met him at the age of 48. It's a long story but suffice it to say he now has his life back. I urge everyone with TBI to explore neurofeedback (NFB, Google it). While my friend still has working memory problems, his emotional and orgainizational problems have improved by leaps and bounds through NFB. No more temper tantrums, vastly reduced anxiety, no more impulsivity, after 30 years of it no more pharma at all, and most important he is truly happy for the first time in his life. He is testimony to not giving up. I just wish Doctors could be more open to alternative therapies. It would make all our lives better and isn't that what medicine should be about?

Thank you so much for the insight!