Life After Your Brain Explodes
When I was 25, I had a ruptured cerebral aneurysm. I later joined a brain injury support group -- reluctantly.
When I was 25, I had a ruptured cerebral aneurysm. I later joined a brain injury support group -- reluctantly.
"Don't compare apples to oranges. All of you are in different areas in life. Remember that. Different categories completely."
Kari, the moderator and social worker of the brain injury support group, was trying to give us a pep talk.
"You need to understand that your lives changed after your brain injuries. Understand that point, and you won't get jealous or hurt," she continued.
It didn't work. Out of the twenty attendees in the room, four, including me, were still morose, sad, and bitter. I was there because, following several months of treatment for a brain aneurysm that wiped out much of my memory and left me partially blind, everyone -- neurologists, therapists, counselors -- told me to join a group as soon as I was released from the hospital. But it took almost four years for me to actually attend a meeting. I had never planned to go, but finally I was so lonely and depressed that I felt I had no choice. Most of all, I had become painfully envious of everyone around me. To live in the outside world again, I needed to cope with non-brain-injured folks, whom I called "norms" a la old-school carnival-freak patois. These norms, with their goddamn unscarred heads, were pissing me off. They would never understand what had happened to me.
I was nervous that first day as I made it to room 10B in the Center for Disability, a run-down, twelve-story building on Manhattan's Lower East Side. I had never before considered myself "disabled," but now, as I begrudgingly accepted that possibility, I tried to prepare myself for my first meeting with my new peers.
Twenty people, wearing resigned expressions, sat on cheap blue plastic folding chairs arranged in a circle. The dingy white walls, offset by blackened gray tiles on the floor, enclosed a room that was suffocating in stale air. On one wall hung a framed poster of a striped cat with a word-balloon over its head that said, "I meow, therefore I am." I imagined Descartes's reaction if he had seen this. He wouldn't have just rolled over in his grave. No, he would have climbed out, purchased a Colt .45, and shot himself.
Daunted but not deterred, I looked closer. All those in the circle displayed evidence of brain injury. Some had paralyzed legs, some were blind, some were deaf. Some were quadriplegic.
At five foot nine, weighing one hundred and sixty pounds, my average frame looked downright Charles Atlas-esque next to some of the weakened bodies I saw before me.
This was one of the rare occasions when I didn't wear my contact lenses, so my view was slightly obscured by the scratches on the thick lenses in my Buddy Holly frames.
The glasses accentuated my fleshy nose while downsizing my large eyes, which were widening in horror as I took time to look closely at everyone gathered there.
Of course, my looks hardly mattered at that point, and I knew it was ridiculous to even contemplate how I appeared. I had entered a room where fashion was the least of anyone's concerns.
After each member had been seated, the moderator introduced herself as Kari and welcomed us to "the once-a-month brain support session," as she called it. She was a petite, attractive mid-thirties white woman who worked at the nearby hospital as a social worker.
The room was chillingly quiet, as in support group tradition we told our stories one by one. I suddenly had monstrous pangs of guilt. I was one of the few there whose ailments, while severe, appeared nonexistent. I wasn't in a wheelchair. Though half-blind, I could see. I could hear. I could speak. And, yes, I could samba.
I had always been irritated about this lack of obvious scarring, thinking mine to be a silent disease. Nobody could look at me and tell that I had a scorched battlefield between my ears, in part because, by all accounts, my brain still worked. I could articulate my thoughts, and even better, I had thoughts to begin with.
We went around the circle, each of us sharing our circumstances. We were different ages, different races, and different genders. The one commonality was brain injury. But even our brains were altered in diverse ways. Three of the younger ones, maybe in their twenties, couldn't speak at all; they sat in wheelchairs and simply nodded.
An overweight mid-fifties white woman with an unkempt gunmetal bob sat lazily in her chair. Wearing an oversized gray running jacket over a shapeless green sweatsuit, she had a foolish grin and drooled thickly.
Kari smiled at the woman, whose name, she told us, was Sara.
"Sara's just started speaking these past few weeks," she said with pride.
Everyone smiled.
"She now can form full sentences," she said, her pride even more pronounced.
Everyone applauded.
I learned after the meeting that Sara had been living with brain injury ever since the early nineties, when she was involved in a three-car accident on the Long Island Expressway. She was the only driver substantially injured. Kari gave me the background.
"That's terrible," I said, "but even though she's in bad shape, it's great that she's speaking again."
"I know," Kari said, "I'm so happy for her progress. Just last year, she didn't even understand the meaning of the word 'the.' "
"That's fantastic," I said, attempting a forced cheerfulness that unsuccessfully masked my sadness. "What was she doing before her injury?"
"She was a corporate lawyer."
Our group also included a former model. A brain bleed had left half of her face paralyzed. She looked like she was wearing a mask.
One distinguished-looking middle-aged black man dressed in a suit stood up. His companion, who could have been his twin, or lover, or friend, said the dapper fellow was named Matt, and had been a heart surgeon.
Matt shushed him. "I can speak for myself, Tim," he barked. "I just want to tell everyone how proud I am of myself!"
We waited for Matt to continue, but he didn't say anything more. He simply sat down again, closed his eyes, and began rubbing his face. He looked exhausted.
Tim broke the silence.
"I'm proud of him, too," he said, without revealing the nature of Matt's injury. "Time for show-and-tell," he said and turned to his friend.
Matt revealed to us the reason for the delight: he stood up, opened his right hand, and showed us a small metallic object.
Then, like a five-year-old thrilled to finally understand the difference between a nickel and a quarter, Matt exclaimed, "For a while I've been thinking this is only some stupid pointy thingy. But now I totally understand what this is! I know what this is! It goes in your skin!"
He was holding a syringe.
A tall, attractive thirty-something white man with longish black hair stood up. His companion, an elderly white woman, immediately told us the gentleman had been an established soap opera actor.
The man seemed to have come straight from a fashion shoot, decked out in sleek black slacks and a fitted blue sweater that hugged his well-built body. I wondered why a guy so sharp was in a place like this.
When he started talking, I understood.
"My-y-y-y-y-n-n-n-nayy-y -- "
It took him more than a minute to utter "my name."
One of the group's main rules was not to interrupt any member when he or she was speaking. We waited out the next two minutes, until he was able to complete "My name is Charles." But his main problem was not stuttering; he seemed to be floating in and out of lucidity itself. In the next breath, he began speaking coherently, but extremely slowly. Like a three-year-old reading Mary Had a Little Lamb.
Even though I was curious to find out the anatomy of his injury, nobody asked him. Perhaps that was the code of the group, I figured, to let everybody speak the way they wanted to, and to tell only as much as they felt comfortable revealing.
Standing up, he recounted the day-by-day schedule of his week. Everybody listened carefully, even me. Usually I had a tendency to be impatient and interrupt. But I said nothing and joined the others in offering silent nods until he was done feeding us his datebook.
Kari picked me to follow Charles. When I was done confessing, I looked around the room. Everyone appeared shocked. One wheelchair-bound elderly Hispanic woman, who had yet to speak in group, introduced herself as Natalie.
She stared at me.
"You seem very healthy and well-spoken, young man," she said. "You must have had the brain injury around ten years ago, am I right?"
"Not really," I said, looking down.
"Oh my gosh, I'm sorry. It was probably more than ten. That was stupid of me. I know brains take a long time to recover, honey."
Her face became solemn. "Even if it's taken you fifteen years, or your whole life to recover, you should be proud. You're still alive, and that's all that matters."
"Actually," I said, "this happened to me three years ago."
"Listen, kiddo," she responded, displaying hints of irritation. "Be serious. When did you have your trauma?"
I tried to explain that I was telling the truth, but nobody in the group seemed convinced.
Then the soap star stood up again. Perhaps feeling encouraged by my openness to talk, he was ready to tell us what happened to him.
Whereas before he couldn't even speak one sentence coherently, now Charles's words came out with eerie clarity. He started slowly, and progressed to a faster pace.
"Ten years ago...
"...my boyfriend was saying bye to me in the Fourteenth Street subway station at midnight waiting for the E train must have been behind a stalled car since it was taking so long to get to me...
"Mike and I had been holding hands and hugged when he left I didn't think...
"...much about it
"Two minutes after he left a cop comes up to me...
"He holds his crotch and asks me if I want it. I looked shocked and as soon as I say something he punches me in the face calls me all the names you can think of...
"He punches me four or five more times I beg him to please stop I'll do what you want please stop he doesn't I can't think straight when he's finished he pushes me into the tracks I survived I ate pizza for breakfast today and... I held the slice with these many fingers"
Charles held up three fingers on his right hand.
After recounting his tale, Charles left, with his companion. The silent room became, impossibly, even quieter.
This is excerpt from The Day My Brain Exploded: A True Story.