by Cynthia Lim
It was the first time I had ever attended a Parent Day without my husband Perry. All morning I had listened to other parents chatter about AP exams, driving permits and where to find a private college counselor, but my mind was on Perry at the transitional living center, in the throes of agitation from his brain injury. Tired of being bombarded by questions about what actually happened, how he was doing, and how was I coping, I leaned against a wall near the catered refreshment table and tried my hardest to blend into the background.
Then I spotted Adrianna, trim in her denim jacket, an oversized beige scarf draped around her neck and her brown hair pulled into a tight ponytail. She saw me at the same time and we began moving toward each other, dodging through the throngs of parents. I could see the lines of concern on her face as she reached to give me a bear hug.
“Are you okay?” she said, squeezing me tight. I hugged her back. Over the years, our sons had spent lots of time together and I had always wanted to get to know her better, but we didn’t move in the same social circles.
“So, what happened?” she asked.
I stepped back to face her. “We were in Portland for a bar mitzvah, just for the night,” I said. “Perry had a heart attack and his heart stopped. He didn’t get enough oxygen to his brain and now he has brain damage.”
“But why? Why did he lose oxygen to his brain?” She shook her head in disbelief. “Where were you? Weren’t you right there?”
I paused. Was she blaming me?
“I was right there,” I said. “They couldn’t resuscitate him.”
“Wow, how old is he, forty-five, forty-six? He’s really young for something like that to happen.”
“He’s forty-seven,” I said, but she was already looking away, having spotted another mother to connect with. The bell rang, signaling the start of another class and I moved past her, not knowing what to say. I was right there, I wanted to tell her, but it happened so fast I was helpless.
Adrianna’s comment pierced me that day and haunted me for weeks and months to come. Was it my fault? Why didn’t I start CPR right away? Couldn’t I have just done a few chest compressions to get blood to Perry’s brain? I replayed the scene at the Benson Hotel over and over in my mind. Why did I go blank, why didn’t I remember the lesson from twelve years earlier when Perry and I attended a CPR class at the kids’ elementary school? The dummy’s lips were worn and the rubber body sticky from wear but we learned how to do chest compressions, count, press again. We giggled through the class; what did we know about emergencies and heart attacks? We were in our mid-thirties; Perry had just made partner at his law firm, and I was a stay-at-home mom. Our boys were enrolled in private school; we had bought our first home. The future was bright and promising. We thought about going out for a drink afterward since we already had a babysitter for the evening. Why didn’t we take that course more seriously?
“Don’t even go there,” Zack, our older son, told me on the phone from college in New York. “Don’t get upset by Adrianna. She wasn’t there and she doesn’t know what she is talking about. Don’t play the ‘what if’ game. It won’t get you anywhere and it will only make you feel worse.”
“You can’t keep thinking about the past, Mom,” said Paul, our younger son, a sophomore in high school. “We just have to move forward. What happened, happened. You can’t change it.”
But I couldn’t block out the remorse. If only I had made Perry go back to the doctor. Three months before his heart attack, he complained of heartburn and saw his primary care doctor. She didn’t do an EKG or order a stress test that could have possibly revealed the blockage in his artery. Instead, she sent him home with a prescription for acid reflux and instructions to stay away from tomatoes, onions, peppers, and chocolate to avoid heartburn.
Perry suspected it was the bouillabaisse in tomato broth that caused his heartburn that evening in Portland when we dined at Il Pazzo with his cousin Marc. I should have insisted we drive to the hospital when he first complained of pain. Instead, I made him walk with me to Powell’s bookstore even though he had to stop to buy Rolaids. In the emergency room in Oregon, the cardiologist said it was most likely the clogging of his artery that was giving him pain, not heartburn.
So where could I direct my sense of guilt? I longed for absolution, to lock myself into a confessional box and unleash my sins, ask for forgiveness, express my sorrow. I wanted to receive my penance, to say I was sorry for what I had not done and make amends. I wanted a priest, a higher power, to absolve me and tell me to go in peace.
After my encounter with Adrianna, I began reading obituaries in the newspaper, carefully combing through each of the squares in tiny font detailing who had passed, noting when they were born, how old they were at death. I studied the ones who died young, in their forties or fifties, and lingered over the ones that listed “heart attack” as the cause of death. I mourned the lives abruptly cut short and wondered about their survivors. Did they blame the doctors? Did they administer CPR? I envisioned their lives, bereft, empty without their husband, wife, mother or father, filled with an entirely different type of pain than mine.
Paul came home from school one day and said, “You know, Mom, there was nothing you could have done. CPR does not revive someone with ventricular fibrillation.”
“What?” I asked. “What is ventricular fibrillation? I thought he had a heart attack.”
“He did and it sent his heart into some kind of arrhythmia. Then he went into ventricular fibrillation. Don’t you remember the cardiologist telling us that after he put in the stent?”
I had dim memories of what was said that night in Portland. I remembered the cardiologist showing us a scan of Perry’s heart with squiggly lines, of Marc speaking solemnly with the cardiologist afterward. But Paul heard and remembered everything, just like he did when he was eight and we bought our minivan. He had paid close attention when the salesman went through all the features while the rest of us were distracted. He was the one who knew where the spare tire was stored or how to fold back the rear seat.
I sent for Perry’s medical records from Portland and scanned through pages of case notes, printouts of his heart rhythms, lab tests. On the intake form, “myocardial infarction and subsequent ventricular fibrillation” were listed under principal diagnosis. I researched “ventricular fibrillation,” a condition where the heart’s electrical activity becomes disordered and blood is not removed from the heart. Ventricular fibrillation caused unconsciousness in seconds and unless medical help was provided immediately, sudden cardiac death followed in minutes.
My pulse quickened as I read on. What if we hadn’t been together in a hotel room at eleven that night in Portland? If we’d been at home, what were the odds we would have been in the same room? Perry was an early bird, often asleep in bed by eleven while I tended to stay up late reading or watching TV in the living room. I would not have been there to hear his gasp and to reach for the phone.
In each of the reports I reviewed, all recommended CPR as immediate treatment, but electric shock from a defibrillator was the only treatment that would restore a normal heartbeat. Survival rates for ventricular fibrillation outside of a hospital ranged from two to twenty-five percent. The doctors in Portland had given Perry a fifteen percent chance for survival. How easily he could have slipped away that night. I imagined what my life would be without him, the grief, the empty space in bed next to me, a future filled with longing and loneliness. No, I thought, that alternative would have been much worse.
There were articles that pointed out the difficulty in knowing when a person would be prone to ventricular fibrillation and how to assess the risks because the symptoms were often confused with indigestion and heartburn. Even people with no previous risk factors were felled by sudden cardiac arrest. There were stories of patients who succumbed to ventricular fibrillation after cardiac stress tests revealed no blockage. I felt a sense of relief after reading these articles but still, Adrianna’s comment haunted me. The guilt lingered.
Perry languished in a coma for ten days after his heart attack, then gradually awakened after he was transferred back to Los Angeles. It was not like anything in the movies; his emergence from a coma was quiet and slow. Gone was the loquacious lawyer, gone were the deep laughs that jiggled his belly. Gone was his short-term memory. His speech came back in whispers, even after his tracheotomy tube was removed.
After a month in the hospital, Perry was strong enough to be moved to a rehabilitation facility. Miraculous progress was made. He learned to walk again although his balance was shaky. He fed himself solid food and learned how to brush his teeth and shave again. His cheerful demeanor returned: the quick smile, the liveliness in his brown eyes when he caught sight of us. He began to initiate speech more often, although he still whispered. As he became more awake and conscious, his brain grew more confused. Then agitation set in as his damaged brain tried to process information. He walked into other patients’ rooms, he tried to pry open the locked doors on the ward, he mumbled phrases we couldn’t decipher. At random times, he peeled off his clothes, a crazy, wild-eyed stare in his eyes, unreachable to me. The Perry that emerged was not the same Perry I knew and loved.
At the height of Perry’s agitation, the rehabilitation hospital was ready to discharge him. Our insurance benefits only covered thirty days and the time was up. I despaired at the thought of bringing him home. How would I be able to control him? Instead, we found a transitional living center where he had 24-hour care and intensive therapy. After two months, the agitation faded and he became easier to handle. He participated in therapy; he expressed his joy and gratitude each time we visited. But still, I wondered if he would ever be well enough to attend any future Parent Days.
Halfway through the hundred days authorized by the insurance company, the case manager at the transitional living center suggested we try overnight visits to prepare for the transition home. I spent a full day at the center shadowing the therapists and helpers, taking mental notes on how they cued Perry in the shower or how they helped him while he was shaving or brushing his teeth. I listened to their instructions on giving him choices on what shorts and which T-shirt to wear, but at the end of the day I wondered if I was really ready to handle him at home.
Perry’s first overnight visit began smoothly. He ate his dinner without prompting from us and laughed at our jokes. He was alert and attentive when we sat on the couch and watched a movie. When we went to bed, he lay stiff as a board, tense and still. After an hour, he began moving restlessly, kicking off the blankets, sometimes sitting up and trying to stand on his feet.
“What’s the matter, Perry?” I asked. “Do you need something?”
He didn’t respond to my questions but kept up his restless movements. At three in morning, he finally fell asleep but I was still awake, listening to his soft snoring and on edge, attuned to his every move, every twitch.
The next morning, Perry was hard to rouse and didn’t want to get up. I let him sleep until nine, then nine-thirty, even though they usually woke him at seven at the transitional living center. He was dazed and unresponsive when I tried to get him to stand. I walked him to the bathroom and managed to get him to step into the shower and sit on the plastic bench we had installed. I poured shampoo into the palm of his hand and cued him to spread it on his head, but he rubbed it between his fingers until it was gone. I shampooed his hair, then handed him a bar of soap. He held it in his hand, unmoving. I soaped and rinsed him off, then guided him to the sink. As I dried him off, he stood inert, gazing off in the distance, not making any effort to follow my cues. When I tried to get his sweatpants on him, he wouldn’t lift his leg so I could slip them over his feet.
“Move your foot, Perry,” I said.
He stood still as a statue, feet firmly planted. I pried his left foot up, slipped the pants over them, then lifted his right foot. He stared at his reflection in the mirror when I spread shaving cream on his face, and wouldn’t hold the razor in his hand. After I finally got him shaved and dressed, he walked back to the bedroom, climbed into bed and closed his eyes. In the morning I had to get Paul to help me pull him into a sitting position, then onto his feet to walk to the dining table for breakfast. He sat woodenly at the table, barely touching his food. He ate if we fed him but otherwise made no effort to lift his spoon with cereal.
I got up from the table, went into the bathroom, closed the door, held my face in my hands and cried. My God, what has he turned into? I thought. How am I going to do this when he comes home for good? I thought about the case manager’s insistence that I have a back-up plan, an assisted-living facility in case this didn’t work out. Maybe she was right; maybe I wouldn’t be able to handle Perry at home. Maybe it would have been better if he had just passed away that night in Portland. What were we faced with now and how was I going to muster the strength for this?
We got Perry up for a walk around the neighborhood, but as soon as we reached home he headed for the bedroom to sleep. He was sluggish and tired the entire day, so that all of the small tasks, getting him to the table for a meal or to the bathroom, took extra effort. I was relieved when it was time to take him back to transitional living center.
A few weeks later, we brought Perry home for a second overnight visit. This time, he was alert and responsive. We had dinner across the street with our neighbors. Although he didn’t initiate speech, he followed along with the conversation, his eyes aware and curious, laughing at the appropriate parts. At home before bed, his eyes were clear, his expression serious. “I don’t know where I belong,” he said. “It feels strange.”
“What feels strange?” I asked.
“Me,” he said. “I have trouble with spatial relationships.”
Before I could probe further, he closed his eyes and sank into a deep sleep. He slept soundly through the night, without twitching or waking.
The next morning, I awoke feeling rested. I got up while Perry was still asleep, and showered and dressed, ready to face the challenge of his morning routine. I went into the bedroom and pulled up the shades to let in the morning light.
“Time to get up, Perry,” I said, turning to face him. “Good morning!”
He opened his eyes and a smile lit his face at the sight of me, his brown eyes warm and full of love. I pulled the comforter back, then the sheets. I guided his legs to the edge of the bed, directed his feet to the floor, and pulled him up to a sitting position to make it easier for him to stand. I waited until he gained his balance, then held his hand as we walked slowly through the hallway to the bathroom. He lathered his own hair with shampoo after I poured it into his hand.
After his shower, I toweled Perry off and positioned him in front of the sink. I squeezed toothpaste on his toothbrush and guided his hand to his mouth. He brushed lightly, then set the toothbrush on the counter. I followed up with more rigorous brushing, then filled his cup with water. He took a big sip, swished, and spit out. I smeared shaving cream on my fingers, then spread it on his cheeks. I placed the razor in his hand and he took a few feeble strokes on one side of his face, then the other, then his chin. He handed me the razor, and I shaved the spots he missed. I pulled his polo shirt over his head, and he reached his arms through the sleeves. He lifted his leg, first the right, then the left as I guided them into his sweatpants. I placed the hairbrush in his hand, and he brushed the wispy tuft of brown hair on the top of his balding head, then the sides over his ears. He studied his reflection in the mirror with raised eyebrows and smiled, then turned to look at me.
“You look so handsome!” I said. Perry laughed, then pursed his lips for a kiss. I reached to hug him and inhaled his scent—a mixture of Tide detergent, Caress soap, shaving cream and musky sweat—as I pressed my face onto his shoulder. His arms folded me into a familiar embrace. He smelled the same and I was grateful that he was still here. This was my absolution.
Cynthia Lim reinvented her life and identity after her husband’s brain injury a number of years ago. She has learned to appreciate small joys: the comfort of home, the support of friends, taking walks by the marina, and reading. Her writing has appeared or is forthcoming in Hawaii Pacific Review, Kaleidoscope, The Legendary, RiverSedge, Rougarou, and various academic journals. She holds a doctorate in social welfare and is executive director of data and accountability for the Los Angeles Unified School District. She attended the Writers Studio at UCLA.