Cynthia Lim

Cynthia Lim lives in Los Angeles with her husband.   She is currently working on a memoir about her husband's brain injury.   In addition to caregiving and writing, she crunches numbers for the Los Angeles Unified School District.

 

Yes Or No (August 20, 2011. Issue 30.)

It is his voice that I miss so much, that deep, resonant voice that sprang from within and carried, that made the boys jump to attention when it was sharp. "Speak from your diaphragm," my husband, Perry, used to tell me. "Your voice is so soft, it doesn't carry. My mom always told me to speak from my diaphragm." Then he would take a deep breath and sing out, "THEN EVERYONE CAN HEAR YOU." Now, after his brain injury, that voice elicits brief bursts of euphoria when I hear it, unpredictable, fleeting, and ephemeral.

The voice came back gradually, in whispers and mumbled phrases at first, when he woke from his two-week coma. We hired a lip reader after I got a neck cramp from leaning toward his hospital bed, straining to hear his voice. The lip reader sat patiently while Perry leafed through a photo album, mouthing words and conversations that none of us could hear. After a long twenty minutes, the lip reader turned to me, disappointed. "I can't make out any words. I think he is speaking nonsense."

Perry's speech conveyed the initial confusion in his brain, three weeks after his coma.

"I've got miles of information," he whispered.

"Why are you whispering? No one can hear you," I said.

"So other people don't hear this information." His brown eyes were serious and solemn. "I can't share it with you."

Months later, as his brain adjusted, his utterances made more sense.

"I feel like I'm drunk," he said after I recited the story of his heart attack, lack of oxygen, coma, and awakening. He never remembered and treated it as new information each time. Other glimpses of his thoughts emerged, telling enough to make my heart stop and think, "He's really there," before he lapsed back into a spaced-out silence.

"Why don't you speak louder?" I asked.

"I don't know if my speech is right," he said.

* * *

After he was discharged from the rehabilitation hospital, a speech therapist came to our house twice a week. The routine consisted of warm-up exercises where Perry said "AHHHH" and held it for fifteen to twenty seconds.

"It helps loosen the vocal cords," the therapist said. But speech didn't proceed much more from there. The therapist seemed impatient with Perry's long pauses and one-word responses. After the warm-up exercise, he placed Perry in front of the computer to work on a concentration game using software for brain injured patients. Session after session Perry clicked on boxes to find matched pairs, without expressing any words.

"Is this really helping with his speech or cognition?" I asked the therapist.

He replied, "Remember that teacher who got shot in the head a few years ago? He worked on this software program during his rehabilitation and now he's fully recovered."

I had done enough research to know that a gunshot wound to the head resulted in a different type of brain injury than one caused by lack of oxygen. When one part of the brain has a localized trauma such as a gunshot wound, the other uninjured parts compensate. But Perry's lack of oxygen caused diffused damage in all parts of his brain. There were no uninjured parts to help compensate.

I bit my tongue to suppress my retort. Instead I suggested they try more vocal work, maybe reading aloud to get him talking? The therapist tried reading scripts of plays a few times. But when I received the next weekly report, he wrote that Perry had seemed to "plateau" and questioned the usefulness of further speech therapy. The insurance company promptly cut off speech therapy benefits.

If Perry had stopped speaking entirely and never uttered another sound, I would have agreed with the speech therapist and given up hope. If he spoke consistently, we would have known the true extent of his cognition, and I would know what to advocate for. But it was the unpredictable and variable nature of his responses that spurred me on and fueled my hope that he was truly there. The random and haphazard times that he spoke with clarity and lucidity kept me searching for resources and badgering the medical community to provide help.

I knew that the rehabilitation therapists viewed me with skepticism or thought I was delusional when I insisted that parts of his cognition remained, that he remembered facts from his life as an attorney. Although he was often silent and spaced-out during evaluation sessions, at home with me, he often answered in a clear and audible voice.

"What's a docket?" I asked.

"It's a calendar for court hearings," he answered.

"What's twenty-seven plus thirty-four?" I asked when I was filling out tax forms and too lazy to reach for the calculator.

He replied, without hesitation, "Sixty-one."

I learned to read his gestures, his eyes, his smiles. They conveyed the connections that were no longer carried by speech. I could sense when he was there, when his eyes were lively, darting around the room, alert to movement and his surroundings, when he smiled and his cheeks took on a rosy glow, when a glimpse of his former self emerged. But just as quickly, it would turn. He would close his eyes and shake his head from side to side. When he opened his eyes, I could tell he was gone, the liveliness faded, the vacant stare apparent again.

I devised strategies to get him to respond. I wrote closed-ended questions on a white board so he could circle or place a check mark in the box. I prompted him to signal thumbs up or thumbs down. I typed questions on the computer, and in more lucid moments, he typed coherent responses.

* * *

Six months after our insurance stopped paying for speech therapy, Perry was lying on the couch after a day of dazed silence.

I knelt beside him. "I hope you have a better day tomorrow," I said.

"Me too," he said as he cupped my head with his hands. He looked at me with lively eyes, full of love.

I studied his face, every freckle, every wrinkle, the scar on his forehead when he ran into a wall as a child, the way his eyebrows arched perfectly, the thin lips hidden by his moustache. I knew this face so well, as I've watched it change from adolescence to adulthood to middle age. This face was so familiar to me, yet could seem so foreign when one of his eyes wandered to the side and the faraway brain injured look appeared.

"You were kind of spacey and tired today," I said.

He nodded in agreement. I studied those freckles again, the ones near his right earlobe that still had a solid pebble-like hole from his piercing when he was in high school. It hasn't held an earring since our freshman year in college, but I liked to rub the lobe anyway and feel that little bump, a reminder of what he once was and what hasn't left him.

"I hope you will talk more tomorrow," I said. "I wish you would talk to me more, like you used to."

He mumbled. "I wish you could fi… me."

I leaned in closer. "What did you say? Fight me? Find me?"

"You have to find me," he said in a clearer voice.

My heart beat faster. "Are you in there somewhere?" I asked, my voice rising.

"Yes."

"Do you want me to find someone to help you with your speech?"

He nodded his head more vigorously. "Yes."

* * *

I needed to find a speech therapist who would believe that the essence of him remained and that he was worth working with. I followed leads from rehabilitation hospitals, friends, and searched websites in Los Angeles until I found G. She seemed intrigued by his case, and in the first session she focused on him intently, questioning, observing, and patiently waiting for his responses.

"It's all in there still, filed away in different cabinets in his mind. We just have to find the right key," she said. There were no vocal cord exercises. "We need to create webs of information for him. It's like a spider web; all the information is in there, but we need to create those connections for him."

The long-term memories were what he remembered best and could respond to, G. told us. We typed questions to orient him: what were the ages of our teenaged boys, where did he go to school, where did he practice law? She questioned him relentlessly, getting him to respond verbally. One of his problems was initiating speech. She taught us to help by starting answers for him. Once he got started talking, it was easier for him to continue. So when we asked, "What do you want for breakfast?" we prompted him with, "Say, I want…" and he would reply, "I want cereal."

Gone was our reliance on the white board and our thumbs up/thumbs down game. As his voice returned, his responses became clearer, more assertive, more definitive.

One weekend we circled the aisles at the grocery store, looking for lunch choices.

"Do you want sushi or a sandwich for lunch?"

He gave me a blank stare.

"Do you want sushi?" I repeated. "Say…yes or no."

Again, the blank stare.

"Do you want a sandwich?" I paused, waiting for a response. "Say…yes or no."

His face broke into a smile and a mischievous glint in his eye appeared.

"Yes or no," he said.

The Legendary