As a caregiver and wife, I sometimes have to remind myself that I have a limited understanding of what it’s actually like to live with brain injury. For that reason, I try hard to honor my husband TC’s experience by not putting my own words around it. Instead, I stick to telling our story through my eyes. He and the other tenacious survivors of the world will always be the experts when it comes to living with this challenging injury.
In my role I am sometimes a fly on the wall, making silent observations about the way my husband negotiates brain injury through his interactions with people and the environment. Other times I serve as a translator, trying to bridge the communication gap created by his aphasia. And over time I have come to reflect upon a phenomenon I call compassion with a catch, or perhaps conditional empathy.
Whatever you choose to call it, it goes something like this:
Dear TBI Survivor, I accept your injury, and I embrace the new you, EXCEPT for (insert issue, complaint, grievance).
Does this sound familiar? Immediately following a brain injury, outsiders often reiterate to survivors how grateful they are for that person’s survival and how accepting they plan to be in the new circumstances. But when put to the test in everyday life, we quickly discover it’s tough to respond with unwavering compassion.
The truth is that brain injury is a constant source of frustration. I can think of many moments in which I’ve felt exasperated by TC’s injury. Commonly, it’s when I’m in a rush to go somewhere or get something done, and he needs a little more time to verbalize his thoughts aloud. Or perhaps it’s when we’re working our way through a miscommunication about schedules or doctor appointments. Certainly, it’s when we’re an unfamiliar place, such as when traveling.
These are the moments I’m most apt to lose my caregiver cool. They’re the moments in which brain injury feels wildly inconvenient. And because they also happen to be the mundane moments in life, not the drama filled ones inside a hospital room, I lose sight of the unconditional compassion I aim to bring to our relationship.
Compassion with a catch is understandable. After all, it’s not easy being part of a family transformed by brain injury. Chaos, tension, and stress constantly threaten to overwhelm us. However, these small moments are the times in which survivors need our compassion the most. They’re as much a test of our empathy as those first days at the hospital were.
When I put myself in the head of a TBI survivor, staring into the frustrated face of a caregiver or family member, these are the thoughts I imagine come to mind:
I’m doing my best. Bear with me.
I need your patience more than ever.
This injury is hard for me too.
To stand in solidarity with survivors, we must not only accept the idea of their brain injury; we must accept the consequences of it. This is the nitty-gritty, brick laying work involved in building a life around TBI.
As a caregiver, it is sometimes my job to teach other family members how to be patient with TC’s injury, and these days I find myself in frequent conversation with our 6-year-old. The advice I give him is the same that I give to myself:
Step back and pause before responding.
Avoid miscommunication by using clear and direct language.
Let go of perfection (as well as the need to be right!)
Work toward ease, not resistance, in all matters.
This advice is probably applicable to all relationships, not just those in the brain injury world and it has helped me to be a more patient and understanding partner in marriage. Likewise, it is important to pay attention to the physiological cues our bodies give us when frustration is about to override our empathy. For me, these include shallow breathing, rising blood pressure, and muscle tension. Any of these signs usually mean I need to step away from the situation for a moment and regather my perspective.
Learning to be the compassionate creatures we hope to be is an ongoing process. Some days we are more successful than others, but we can always continue to try. Sometimes this means showing compassion to ourselves in the form of self-forgiveness and remembering that tomorrow is another chance to be a loving caregiver.