My friend Susan pointed her out. “There she is. The woman I told you about. The one with the brain injury.” Susan was pointing at an unremarkable looking woman. A bit on the skinny side, straight brown hair, sitting alone at a table, all her attention on writing in a small notebook.
In my previous life, I would have ignored her. I would have been so focused on rejoining old friends, members of WARP (Weave A Real Peace https://weavearealpeace.org/), mostly women, kindred spirits, many dressed in striking ethnic attire, all with strong personalities, lots of empathy, doers—I probably wouldn’t have noticed her. But now, at the phrase “brain injury,” she had all my attention. I was intrigued. I wanted, needed to hear her story. Since my own brain injury, I’ve felt the need to connect with each brain injury survivor who crossed my path, whether it was Raffi, the Israeli terror survivor who had a bullet shaped dent in his forehead, my student, Mitch, a football player who, after suffering a severe concussion during practice, could no longer play football, or a friend of a friend, who had a benign tumor removed to prevent seizures.
I completely forgot about Susan, who stood by my side, and approached the unremarkable woman, all her attention consumed with writing in a small black notebook, clearly transferring information from her phone. When she sensed my presence, she raised her head. I was struck by the look in her eyes. She looked so timid, anxious, wary, as if she was ready to flee at any moment. After I introduced myself, using my label “brain injury survivor,” she smiled. “Sorry, I have to write these note. Otherwise I’ll forget.”
Her name was Barb. She suffered a severe concussion a year ago—early days into recovery by brain injury survivor standards, the roughest period of recovery. Like I was during my early days, her issues with sensory input were frequent and debilitating. We had a lot to talk about.
We talked about our injuries, about deficits. We laughed about our difficulties with short term memory and short attention span. We lamented our issues with fatigue and our frustrations with our inability to predict levels of functionality, whether we will be able to participate in planned activities. But our main topic of conversation was our difficulties processing high volumes of input.
As I suspected, she was sitting apart from the crowd in order to minimize the quantity of sensory data. Several times I caught her standing very still in the middle of a gaggle of women. She looked like a deer caught in the headlights. I immediately recognized the situation—she was suffering from severe sensory overload. When I saw her in that state, I took action to alleviate her difficulties—I laid my hand on her arm and guided her over to a quieter spot, speaking to her soothingly. “Let’s go over here. I’ll stay with you until you feel better.”
A couple of times, I too felt overwhelmed and my eyes started tearing up, and she provided me with the anchor I needed, engaging me in conversation in her soft voice.
When us brain injury survivors experience overload, all colors seem garish, blinding, all sounds are harsh, a defeating cacophony, smells noxious. People brushing by sends us reeling. All labels are jumbled up, there’s no way to file, process, and move on to the next piece of information. It feels like there’s utter chaos in our minds, unintelligible partial thoughts darting around in all directions. We can’t make sense of anything. We are alone, terrified, frozen.
The only way to restore order and calm is to find an anchor, something to focus on, a label to cling to, to help us escape the chaos, to a quiet place, where the pace of our environment is slower, where we have time to sort and file. When we re-establish our ability to label, the world comes back into focus, and once again, we can function. The anchor can be a light touch, a hand on a shoulder, a familiar soft voice, a recognizable face that swims into focus from the crowd.
Grocery shopping has always difficult. Making choices is overwhelming: regular hummus or hummus with pine nuts, family size or regular. What flavor yogurt? Plain or blackberry? Perhaps raspberry? Which brand of shampoo? Suave? Herbal Essential? What about the flavor? Apple? Coconut? Then there are all the people pushing past you. And those standing in your way. The fluorescent light, the loud announcements, the music, the colors. It’s all too much. I used to freeze and get stuck, in the middle of the chaos, unable to extricate myself, and start crying—I could only shop with a companion. Now, I slow down, come to a stop, lean against the cart, and wait, until I calm down. Sometimes it takes a few minutes, sometimes more. Unlike during the early days, I only panic briefly—I know I’ll get over it.
Farther along in my recovery, unlike Barb, once I have my anchor, I can usually take over and manage on my own.
But there are still times where don’t have the resources to help myself. Now I know to restrict myself to two or three aisles. I know that otherwise, I will need outside help, that I won’t be able to manage on my own.