Brain Injury Community

            I felt the moisture building up behind my eyes.

            Stop it. this isn’t about you. This is about Rebecca and what she’s been through, about what she’s still going through.But really it was about me as well. Rebecca’s plight touched me in ways that I hadn’t felt since my last encounter with another brain injury survivor.

            Standing in line behind her in Starbucks, I observed her as she leaned nonchalantly against the counter. I knew that stance—that was me, more than a decade ago, the slight swaying in the nonexistent breeze, the carefully annunciated speech, and the slow response to the barista’s terse questions. There was no doubt—this tall, skinny, unkempt woman was a brain injury survivor, in her early days of recovery.

            I wanted to tell her that it gets better, that it takes time and a lot of rest. But I didn’t want to interrupt her thought process as she focused on placing her order.

            She must have felt my eyes on her—she turned towards me and said something that I didn’t catch. I took a step towards her. “You’re a brain injury survivor.”

            Her eyes widened. “How did you know?”

            “I recognized myself in you. That’s how I was more than a decade ago.”

            She gaped at me. “You’re also a brain injury survivor?”

            I grinned at her. “Yup. Brain bleeds followed by three brain surgeries.”

            She wobbled a bit. “Me too!”

            I felt giddy. Meeting another member of the brain injury community always did that to me. The community includes many members. In fact, 15% or so of the population at large have suffered a brain injury. But between our residual deficits, the all too frequent self-doubt and all too prevalent impostor syndrome, connecting with another survivor is an uncommon occurrence in daily life, especially in the early days of recovery.

            Only other brain injury survivors really “get it.” Only they can truly empathize with us about our daily struggles, about our tenuous grasp on the world around us, our emotional ups and downs, our neuro-fatigue, the many headaches, our cognitive deficits, the focus needed to function, and our struggles interacting with neuro-typicals, who don’t quite get it. Those of us who look fine, are deemed fine by outsiders to our world. Those who don’t look fine, are often judged to be less.

            The first few halting sentences quickly evolved into a flowing conversation. The world around us melted away,  until the barista interrupted us. Rebecca had yet to sign the receipt, and the line behind us was growing. As we waited for our drinks, Rebecca and I talked.

            She was a survivor of an AVM (Arterial Venus Malformations) bleed. AVMs are the vicious cousin of CCMs (Cerebral Cavernous Malformations a.k.a cavernous angiomas or cavernomas). Unlike CCMs, which plague me, AVMs are fed by arterial blood flow. When these malformations bleeds, CCM ooze, whereas AVMs gush. Any brain bleeds can be devastating, whether from a CCM, AVM, or aneurysm, though the chances of surviving CCM bleeds are higher.

            When Rebecca mentioned that her bleeds took place twenty years ago, I thought I misheard her. But she’s clearly in bad shape, the way I was in my early days of recovery. How could she be struggling the much after twenty years?

I had not misheard her. It had been twenty years. She must have been in much worse shape than I in her early days of recovery. Or, in some ways, worse, she was left to her own devices, with little to no support and resources to help her in her recovery. My blood started to boil as the worst case scenario occurred to me. Could it be that she didn’t have sufficient health insurance to get her the rehab she needed?

Though many survivors experience similar neurological symptoms, no two brain injuries are the same, even when they occur in the exact same location in the brain, in exactly the same manner, with the same level of severity. Some survivors experience mild deficits, others more severe. Some experience mostly physical deficits, other mostly cognitive disabilities. The range of possible deficits is huge, as is the severity of symptoms.

            She was gob-smacked by the level of my recovery. “But you… you look like there’s nothing wrong with you.”

I had so many questions. How old was she when her bleed happened? What was her journey to recovery like? Why was she still exhibiting such severe deficits? She looked unkempt, her hair a tangle, her clothing worn, her work boots scuffed. Did her injury keep her from earning a decent living? Was she homeless? Or was she merely wearing her comfy weekend attire?

She had many questions as well.

We both had to leave. Rebecca looked flustered, her eyes darting around. “I don’t have my phone with me.”

I entered her number into my phone. “I’ll text you.”

“You should know that my short-term memory is bad.”

I smiled. “So is mine. I’ll put in details of our meeting in the text to help remind you of who I am.”

She touched my arm. “Thank you for reaching out. I’ve never met another brain injury survivor before.”

My jaw dropped. How could she have been that isolated for so many years? I had to remedy that. I had to talk to her some more.

As soon as she left, I sent her the promised text. “This is Deb—we met in Starbucks. I also had brain bleeds. Mine were 15 years ago. In my case you can’t see my deficits. It was amazing to meet a fellow brain injury survivor. I’d love to talk to you some more.”

She responded within minutes. “Me TOOOOO! Let’s have tea?”

I’ll be meeting her at the same Starbucks in a couple of weeks.