Seattle, WA — I tried my hardest to fit in at the overcrowded conference on traumatic brain injury. I checked in and headed over to help myself to breakfast, picking my way through all manner of walkers and scooters. A man across the table from me poured syrup on the floor and looked down. I was paralyzed between wanting to help and not wanting to call attention to what may have been an accident. Another man who was explaining that he’d been a base player in his pre- brain injury life stopped mid-sentence.
“Hey,” he said to the man looking down at the syrup. “Ya just gonna leave that?”
The spiller looked at us and said nothing. He set the syrup back on the table and moved on to the butter. The bass man looked at me and shook his head, continuing to tell his story.
I was disoriented. Did I just see an outburst or a forgivable accident? And if the cause was understandable, could ignoring the spill be chalked up to a disability as well? Or was the spiller just being lazy? Was it fair that I, as an able-bodied person, make this judgment? I didn’t know how to react. I was back to the most intuitive but also least natural feeling of all. Where was my tribe in all of this? I suddenly had a deep need to find the people whose insight I could trust in this chaotic atmosphere of abled and brain-injured people. It wasn’t enough to side with the service providers as I did at work, knowing whom I can relate to and keeping my professional distance intact. Every time I met someone whom I thought was a provider, the conversation inevitably turned to, “When I had my accident…” and I hit a wall. Quick, control face, soften eyebrows, smile and say, “Oh, you have a TBI?”… wait for story, forget finishing the previous conversation.
I had nothing to compare this situation to. People made noises that I wasn’t used to hearing in public. Emotions were close to the surface and social graces like keeping your voice down when a speaker presented were forgotten. Someone caught me in the shins with their scooter. I smiled and said it was okay, fearing an outburst for getting in the way. I couldn’t navigate, emotionally or physically, as we left the keynote address and moved to breakout sessions. I went to a workshop for clinicians taught by a doctor from Harborview Medical Center who specialized in treating people who have traumatic brain injuries. Surely there’d be more providers in here and I could ask how to regain my feet again.
The doctor powerpointed her way through Mechanisms of Injury and then the Glasgow Coma Scale. We saw MRI images of brains with injuries. The light literally went out in various sections, showing the vast scope of how a brain injury affects our bodies. She walked us through treatment techniques. She was professional and distant, like a long clean hospital hallway. The question-and-answer period moved slightly to more personal reflections. I hoped for an answer and raised my hand.
“You’re so close to my question,” I said. She smiled and I felt encouraged. A doctor from Harborview must have an answer, and I was tired of feeling like I was trying to climb out of a tree but couldn’t quite find the top of the ladder with my foot.
“When you have a patient,” I started. “How do you handle the long stories, the anger, the tangents, and get the information you need in order to conduct an assessment?” I hesitated and hoped I hadn’t offended the people in wheelchairs whom caregivers wheeled in ten minutes late. We were on TBI time now. The doctor had an answer. Thank God.
She opened her mouth, paused, and then said, “Well, to be honest, I have residents. They do that.”
I looked over at my coworker. She shook her head and shrugged at me. Soon we’d have a break and I’d be back to the unsure politeness of trying to not seem overly helpful when someone tried to navigate pouring ice water into a flimsy plastic cup; not wanting to be rude and offer help if it was important for her to do it on her own.
I felt constantly guarded when I asked if someone wanted assistance – emphasis on wanted, not needed – waiting for someone to tell me they could do it themselves, which actually I understood very well. And I was afraid of the anger. Survivors of traumatic brain injuries whom I’d worked with as an Information & Assistance Specialist had short-term memory loss, intuition and anger issues. The little net that keeps our emotions from coming out until we’ve thought them over sometimes has larger holes when you have a TBI. I would begin to ask a question and the reminder of unjust treatment or exasperation that I’d asked the same question their last case manager had asked would spark a fury like matches to gas. If I waited it out, I was accused of not being interested. If I asked questions, I was accused of not listening the first time. Simply, I walked on eggshells around these clients and imagined them to have the supernatural strength to squeeze the heck out of me if they wanted to. Then I would beg my coworker to take them. I suggested that she had more patience than I did. She said she had to take lots of deep breaths too. I didn’t say anything after handing over the file to her except, “Well, you’re wonderful.” Then I would hold my breath and look away because I was afraid she would give them back to me.
I finally decided to attend an art workshop. I love art. Art therapy wouldn’t be over my head. Again, I couldn’t tell if the colleagues around my table were TBI survivors or service providers or even just quirky artists.
The instructor began talking about the stroke she suffered in her 20’s and mentioned the curse of, after years of work, looking normal but still dealing with leftover injuries like sometimes lacking a filter. Sometimes she still had mobility issues. When she spoke about art, I forgot her injuries.
“If art is in you, you have to do it,” she told us. I resonated with this and for some reason, I trusted her. After all, she didn’t have a filter. There was nothing between her words and the belief. Even though I trusted my most supportive friends, I trusted her more. I sketched a peapod in the notebook she gave to us. I tried to relax. I tried not to be offended when the woman with the Great Dane gave me a dismissive look when I mentioned her “service horse”. I had the feeling again of trying to find the ladder with my foot as I crawled out of the tree. Even my sense of humor offended people. Later in my favorite workshop, she would be friendly again and tell me she liked my handwriting. I didn’t know if she had forgiven me or simply forgotten who I was. I could see how caregivers often did not last long at L’Arch in Toronto, an intentional community of able-and unable-bodied people, established by Jean Vanier. The community’s goal was to share life no matter what your physical or cognitive capacities might be. There, caregivers live with people with injuries, and everyone is on the same playing field. Wasn’t this an ideal I believed in? Yet it was unnerving for a do-good vanilla girl like myself to have someone say what they actually thought of you. At the same time, the person might express unbounded grace and good humor when you commit a social faux pas like forgetting to turn over your mug before pouring the coffee.
“Oh, I do that all the time,” someone behind me in line, speaking from a wheelchair. I looked down at the coffee soaking into the tablecloth. At first I wasn’t sure I wanted someone to related to me. My first impulse was to say regrettably, “But I don’t!” My mind continued from there. “I don’t usually spill! I don’t usually speak at the wrong time. You do that! Not me!” I didn’t want someone to call attention to my weakness, even if it was to relate and make me feel better. How arrogant am I?
I could see why L’Arch was so hard for volunteers. The difference between giving someone care versus living with someone with a brain injury and taking whatever they had to offer is strenuous on the “I’m-in-control” part of the brain. Add that to admitting I-can-learn-as-much-from-you-as-you-from-me and leveling the playing field seemed frightful.
The truth was that I was back to finding my tribe again. Were we all on the same side? Whom could I confide in about being uncomfortable? I couldn’t even accept that I spilled coffee let alone admit that I needed help processing my place in this conference.
I sat down in the next workshop. My coworker didn’t help when she started to tell me about her family member with brain shunts and what the medical procedures did to her.
“I can’t do this right now,” I told her. “I’m going to go read my book.” For not the first time, I took a break and escaped to my room. Often all I could do was sleep. I was on overload. Who would understand?
When I came back for the last workshop, I found myself at a table with eight other people. The keynote, previously a film teacher, would lead an exercise on how to integrate back into society if you’d suffered a brain injury. We would brainstorm, he said. The young man across the table from me threw his hands over his head and made thunder sounds. Get it? Brainstorm? Another man at our table misunderstood the exercise.
“So who here has a…a…” He lost his words and his caregiver said, “Brain injury.” He nodded, “yeah” and put his hand up.
I looked at my coworker. Another young man to my right – way too young to be injured – lifted his left hand. He was shy and I felt a calm safety sitting next to him. He told me he’d had a stroke last year that left his right side paralyzed. The woman with the Great Dane sat next to him petting her dog’s head. With the exception of the guy who acted out “brainstorm” and a young guy with pretty eyes whom I couldn’t understand, I was sure the other two people across the table from me were service providers. Until their hands went up.
We realized that the enthusiastic man who forgot his words had the exercise wrong. We were to analyze a given case study. But I was already called out as a non-injured person. I made my face soft and welcoming. We will see how this goes, I thought. My coworker said she would present our group’s findings and I said I would be the recorder. I sniffed the black Mr. Sketch marker. No one else wanted to smell it but they laughed. This was when the woman with the Great Dane told me she liked my handwriting. I thanked her, finding it easier to make sheepish eye contact with the dog, Bella, than with her. The shy young man next to me spread out his curled right hand on the table, trying to ease the spacticity. I wanted to trace it with my black marker.
We thought of ideas for reintroducing our TBI case study person back into society. It was easy for me to come up with ideas but I waited. The group gave careful answers. My coworker and I held back from offering too many suggestions until someone across the table called out, “Isn’t this what you do for a living? You should know the answers!” I took this as a sign that it was okay to contribute a little more and chimed in. I scribbled away, even noting down ideas from the man whom I couldn’t understand. Little by little, we completed the exercise. One of the tablemates who was a TBI survivor and a very dapper dresser offered to be our reporter. We said that’d be great.
The workshop leader eventually tried to regain control of the room so we could give our reports. He had survived a TBI and seemed okay with the chaos continuing around him. When he finally had our attention, he addressed the group.
“Okay,” he asked. “Who’s number one?”
On impulse and supported by my table of new-found non-filtered friends, I put my hand in the air, one finger up.
“We’re number one!” I said enthusiastically. The room hushed. I truly thought we were, and we were a great group. Brainstorm-man shook his head at me.
“No, we’re not,” he said. “We’re number three.” He flipped over a folder that said “Group #3”. Okay. No one showed me that when we started.
“Are you sure you don’t have a TBI there?” he asked. Oh God. “Maybe having some impulse control problems?”
I blushed massively, embarrassed and accepted at exactly the same time. I didn’t know what to say. If I said no, I was saying there was something that I didn’t want to identify with – which I knew now I didn’t believe. If I said yes, well, then we had more in common. I took the middle road.
“Maybe. That sure could be,” I nodded my head. He smiled.
In the end, our group went third. Our dapper-dressed reporter was a hit. Everyone clapped. The speaker said we had great ideas and Brainstorm-man commented that Marvin Gay was the bomb. I asked if he was in a band and he looked at me like I was crazy. My bad.
The shy young man filled out his workshop evaluation next to me. He smiled sweetly and listened when I told him I had had shoulder surgery last summer and struggled at first to use my non-dominant hand to write. Of course, though, I healed. I wanted to give him a hug but wasn’t quite sure what that would do. With the perpetual lack of filters around and all I’d learned about the regularity of a TBI survivor being obsessed with sex, I refrained. My dirty mind was already jumping to conclusions when I saw Keynote Speaker Gregory Goldberg’s book title was, “The Organ of Intelligence”. Maybe I was the injured one. I chickened out and simply said, “take care” before wandering away.
Just before checking out of my hotel, I ran into a woman who looked and sounded like a service provider, ie. not a TBI survivor. She’d sat at our table for the last workshop and had jumped in to sing the Sesame Street jingle, “One-two-three-fooour-five, six-seven-eight-niiiiine-ten, eleven-twel-el-el-el-elllll-elve”, dubbing us “the counting table” which became even funnier when I announced, “We’re number one!”
I sincerely meant it when I told her, “It was really nice to meet you. Why did you come to this conference?”
She was so happy and witty. I was sure she must be a caregiver or a family member trying to understand TBI’s a little better.
“I have a brain injury,” she told me.
“I had several brain surgeries.”
“Wow,” I said. And I meant it. She was sparky and beautiful even if she did tease me about my outburst. She smiled acceptingly. Suddenly, I realized she was one of my tribe. I told her that I wasn’t comfortable (in more words than that) but she understood. I continued on and on that I just couldn’t tell who was who, and that my years in social service burned into my mind the uncomfortable belief that, if there was a provider, there must be a client. It was safe though, to admit this to her. She understood somehow. We, I thought, are from the same tribe. I remembered what the artist told us the day before. Share what you make with people who build your work up; you don’t have to listen to the rest.
I realized that my “table tribe” had solidified in the last workshop and would support me even if the rest of the conference was disorienting. I finally had a connection and didn’t feel dizzy when I looked at the chaos around me. If we slid back the banquet doors and all occupied one room, I sit with these people. In the spirit of being generous with the personalities of those around is, maybe we’d even let the man who spilled the syrup sit at our table. Perhaps he was having a bad morning.
There is pleasure in letting people be who they are. There is pleasure in me not being able to count. And there is pleasure in the people who called me out. In the end, I told the woman from my table that I hoped we’d meet again, and she agreed.
After the conference, my coworker dropped me off at Seatac Airport to go visit family. Standing in line with many serious businessmen, I was glad to leave the uncomfortableness of the conference behind. The man who checked me in put on a pair of women’s sunglasses which some traveler had left behind. His coworkers shook their heads and laughed. How much I appreciated his inhibitions! To laugh felt like coming home. Hmm, I thought, as I shook my head – found another to add to the tribe.
my dad has a brain injury; so much of your description of discomfort and disorientation felt familiar. sometimes the best thing to do is to read a book or take a nap. i love how you are developing a roving tribe. you have gifts, my friend, hard core gifts.
Ah, it is just so nice that you’re reading this and I’m glad I was accurate in portraying the disorientation. That was definitely a defining experience. You keep me going! Thank you for truly being from the tribe.
Wow! I felt like I was on the apron strings of Alice in Wonderland reading this, where the real and the fantastic meld together like spin-art. What an education. I loved the “We’re number one!” shout out. I laughed at that – I can totally picture you claiming it with so much spirit and conviction! 🙂 You’re awesome! Who cares if it wasn’t the intent of the question. Great writings – I really enjoy reading them, dear one. Thinking of you!
So nice to read your comments – thanks for reading. Sometime I’ll have to write about our adventures in teaching. Thinking of you too!