*Some patients experience what they describe as a shock; however, device interrogation shows no record of a shock being delivered. This condition has been termed phantom shock.
13
A Mother’s Heart
In certain circumstances death may come like a thief in the night to a susceptible person living with circulatory conditions that approach the danger line.
—John A. MacWilliam, British Medical Journal (1923)
My mother loved to sleep. Sleep was her balm for the daily irritations of an old-fashioned husband, a full-time job as a university lab tech, and three demanding children. But her nights were rarely restful. She suffered from a sleep disorder that was never precisely diagnosed. She’d wake up screaming, kicking, thrashing about, sometimes even jumping from her bed, as though being pursued, landing, with a racing pulse, heavy breath, in cold sweat, on pillows we placed on the floor for her protection. My father would try to comfort her, but she was rarely consolable, largely because she never knew what had happened. We took her to a psychiatrist, who asked my mother if she was unhappy in her marriage. (My father, speaking for her, quickly rejected this possibility.) The doctor put her on Valium and other sedatives that left her groggy and unproductive and did not help besides, so my mother discontinued them. Eventually, my parents took to sleeping in separate bedrooms whenever my father needed to rest. My mother continued to have terror-filled nights for most of her adult life.
I don’t remember ever thinking that my mother’s dreams could be fatal, but in retrospect, after she got her coronary stent, we should have been more concerned. In a seminal 1923 paper, “Blood Pressure and Heart Action in Sleep and Dreams,” John MacWilliam, the Scottish physiologist who identified ventricular fibrillation as the major cause of sudden death, wrote that there are sharp rises in blood pressure, heart rate, and respiration during sleep that exhibit a “suddenness of development.” The physiological changes, he wrote, are often more marked than those that occur after running up flights of steps. In his paper, MacWilliam noted that animals experience both sound and disturbed sleep. In the former, blood pressure, heart rate, and respiratory rate decrease as the animals relax into slumber. The latter type of sleep, in contrast, often has violent manifestations: groaning, biting, growling (in dogs), and verbal outbursts. Such changes “imposed sudden and dangerous demands on the heart,” and MacWilliam surmised that sudden death could occur, even though the body should be in a state of repose. “In a heart susceptible to fibrillation,” he wrote, “a sudden call on the heart during muscular exertion and excitement in the waking state is often fatal. In the disturbed conditions of sleep and dreaming, a similar mechanism is sometimes brought suddenly and strongly into action.”
The belief that intense dreams can cause sudden cardiac death is embedded in folklore. In Thailand, for example, “widow ghosts” take men away in the dead of night, according to local legends, and the men have been known to disguise themselves as women at bedtime to protect themselves. However, research into this phenomenon only began about a hundred years ago. We now know that 12 percent of cardiovascular deaths and 14 percent of myocardial infarctions probably occur during sleep, even though victims are ostensibly resting. Intense changes in sympathetic nervous system activity can take place during rapid eye movement, or REM, sleep, when most vivid dreams occur. REM sleep can result in surges of adrenaline that disrupt atherosclerotic plaque, stimulate clotting, and cause coronary spasm and ventricular arrhythmias, which may manifest only after awakening and thus be wrongly attributed to the early-morning period rather than to sleep itself. Especially vulnerable times are 2:00 in the morning, when coronary events seem to peak; 4:00 a.m., when patients with sudden arrhythmias most often die; and the last episode of REM sleep before awakening, which is frequently the most intense of the night. In the latter, breathing often becomes fast and irregular, and blood pressure can rise dramatically. Heart rate may increase from 50 to 170 beats per minute just a few seconds into a nightmare. This is likely what killed my mother.
My mother got her stent in 2006, when she was sixty-four. I often worried she’d be the first in our immediate family to succumb to a heart attack. Heart disease was not her biggest problem, however. In 2011, after several months in which her movements slowed as if she were passing through viscous oil, she was diagnosed with Parkinson’s disease. Sinemet, the anti-Parkinson’s drug, helped to relieve her muscle rigidity, but her condition quickly declined. She became forgetful. Conversations, once so easy with her, stopped flowing. She stammered, her lips pursing as though she were slurping a thick beverage through a thin straw. Parkinson’s also caused dangerous drops in her blood pressure, resulting in frequent falls. After about a year, we pressed our father, who was having his own memory trouble, to retire his genetics professorship in North Dakota and move to Long Island to live closer to me and my brother. When my parents arrived in August 2014, it was alarming how much my mother’s situation had deteriorated.
She had become virtually helpless. Nights when I’d visit, my mother would be sitting at the dinner table, papers strewn about, spilling food on her bib. Her precipitous decline no doubt overwhelmed my father, who frequently became enraged, a big change for him. The friend who helped my parents move took me aside after they arrived. “Your father has to have hope,” she said.
“Hope for what?” I asked.
“That one day your mother will be able to do the things she can’t do right now.”
We wanted my mother to remain in her own home, which meant that we—my brother, my sister, and I—were going to have to chip in to help. It was a small price to pay, we thought, for our parents’ continuing to live independently. When my sister visited from Minneapolis, she would bathe and dress my mother. I administered her medications and helped with groceries. My brother took care of household issues. Still, my parents’ home, like my parents, was in a constant state of disrepair.
Of course, we wanted to do more, but my mother, embarrassed by her disability, felt guilty. One night I was helping her up the steps to her bedroom. She was walking slowly; after several recent spills, she was terrified of falling again. But even as she struggled, her hands turning white as she gripped the banister, she turned to me and said, “This must be so hard for you.”
As the workload increased, we hired caregivers—as much for ourselves as for our mother. But after some thefts, we realized we had to be more careful about whom we allowed into our parents’ home. One caregiver took an iPhone, silver spoons, and my mother’s diamond earrings. I furiously drove to her home in a run-down section of Queens to retrieve the items. She lived in a basement with her two children. The sink was filled with unwashed dishes. Any sudden vibration and tiny roaches would scurry into cracks in the wall. The children watched fearfully as I demanded before an outsized poster of the goddess Lakshmi that the woman return the earrings—my mother was despondent without them—but she steadfastly denied she had taken anything. In the end, I stormed out empty-handed.
My mother’s disease progressed. She broke her foot in a fall and spent half a day in the emergency room. She developed staring spells in which she would become unresponsive, causing a new round of panic. More than once we took her to the ER to rule out stroke. Because of Sinemet, she started to have visual hallucinations of insects crawling on her bed or people sleeping on the carpet. She resisted using a bedside commode, so my father was constantly walking her to the bathroom, even in the middle of the night, when we feared she’d fall and break her hip. My mother still had nightmares, but because of the Parkinson’s, she could no longer jump out of bed. Eventually, she required a live-in aide to help her with the basic activities of daily living: bathing, feeding, walking, dressing. She once said to me, “Son, do the things you want when you are young. The decline will happen faster than you realize.”
We added more and different medications—fludrocortisone for low blood pressure, Seroquel for hallucinations, drugs to treat the side effects of other drugs—with little bene
fit, never knowing whether our mother would have been better off if we hadn’t adjusted the medications in the first place. Even as Parkinson’s robbed her of the life she’d enjoyed, a full life raising successful children and managing a household that was always running on overdrive, my mother never asked, why me? But we always said, why her?
After each stepwise decline, she’d insist, “If I can stay like this, it’ll be okay.” She was able to recalibrate her expectations as her condition deteriorated, leaving her spirit mostly intact. But it was painful to watch. One day my brother, Rajiv, ever the pragmatist, said he wished our mother would die quickly. It was how our maternal grandfather had died, of a myocardial infarction just after his eighty-third birthday, and I remembered my mother had been grateful for the quick and painless demise. But I tore into my brother. I wasn’t ready to lose my mother. I wanted her to remain alive for as long as possible.
The morning she died, Rajiv called me from his car. It was an odd hour for him to be calling—I was getting ready to go to work—so I knew something was wrong. “Mom isn’t doing well,” he said calmly. “I think you should go over there.”
I told him I’d go after dropping my kids off at school.
“Go now,” he said. “I think Mom just died.”
It was a sunny April day. A mild breeze was blowing under a light blue, nearly cloudless sky. Speeding down the road, I called my father. He answered the phone coolly, but when he heard my voice, he started sobbing. He couldn’t tell me anything—other than to drive carefully—so I told him to hand the phone to Harwinder, my mother’s aide. She told me that she had been awakened at five o’clock in the morning by groans. She called to my mother from her cot across the room, but my mother did not respond. She was about to get up to check on her when my mother took three deep breaths and went silent. She assumed my mother had gone back to sleep—this had happened before during a nightmare—but in the morning when she tried to wake my mother, she did not react. She wasn’t breathing; her skin was pale and cold. “She has completed, sir,” Harwinder said before I heard my father shout that an ambulance had pulled up outside.
I’d visited my mother the night before. She was having a harder time walking than usual. When I asked, she admitted to feeling mild pressure on the left side of her chest, which I attributed to a recent fall. Now, maddeningly stuck on the road behind a school bus, I realized the chest pain had probably been coronary angina and that my mother had likely died of a heart attack in her sleep. Nothing else could have killed her so quickly.
When I pulled up to my parents’ house, there were no cars in the driveway. I ran up to the front door, but it was locked. I frantically rang the doorbell, but no one was home. When I called my brother, he told me the medics had taken my mother to the Plainview Hospital Emergency Room a couple of miles away. He had arrived just in time to prevent them from administering CPR in the back of the ambulance. They had insisted on it—my mother did not have a do-not-resuscitate order—but my brother was adamant, even pulling rank with his hospital ID. He was not going to let them assault our mother. It was plain to see, my brother told them, that she was gone.
In the emergency room, I was led to a curtained-off space where Rajiv, Harwinder, and my father were sitting with my mother. She lay on a gurney, a purple throw draped over her. She had on red nail polish; a bright red bindi still adorned her forehead. My father sat on a stool beside the stretcher, his arms thrown over her body, his head resting on her arm. He touched her hands, massaged her feet. Her mouth was open. He asked me if they would close it for the funeral. “She was so pretty,” he said, and then he broke down.
Later that morning, I took Harwinder back to my parents’ house so she could prepare it for visitors. As we pulled up, the haze from a neighbor’s sprinkler refracted a colorful rainbow, a minor affront on such a solemn day. Inside the house, I managed to make it up to the landing before I was overcome. The fan was still running in my mother’s bedroom. Her shawl was hanging on her brass bed frame. The pillow she used to prop up her feet lay under her comforter. Inside the closet was the back massager I’d presented her years before, still in the box; she’d been waiting to open it. On the bedroom floor were the discarded flip tops of drug vials, gauze, and a “smart pad” for checking arrhythmias: the detritus of a futile and aborted resuscitation that the paramedics had left behind. Like both my grandfathers, my mother had succumbed to ventricular fibrillation after a sudden heart attack, though in her case it had happened during sleep. That cardiac death had hit my mother during slumber made the heart seem even more menacing.
In the wet, flat days that followed, there was so much to do—informing friends and relatives, receiving guests, then the funeral and the cremation—there was almost no time to grieve. But once the ceremonies were over, the grief pelted me like waves from the sea, receding periodically only to wash over me once again. At the funeral of a friend’s mother two years before, a colleague had said to me, “You never really grow up until your parents die.” Now, finally, I understood what he meant. What he meant was, while your parents are alive, there is always someone who thinks of you as a child. When I was a boy, my mother used to tell me a Hindu myth about a man who had been promised the world—unlimited riches—if he would just drown his mother. At the riverbed, as he starts to submerge her in the frigid water, she implores, “Stay out of the water, son! … You’ll catch a cold.” And so it was with my mother. If our family was a body, my mother was its heart: the piece that nourishes and ensures the workings of the rest. On the morning of her funeral, as I was adjusting my tie in front of the mirror, I could almost hear her telling me to stand tall, wear a proper suit, and speak confidently. I remembered the frogs in high school, and I started to cry. I could hear my mother telling me once again, “You should do a different experiment, son. Your heart is too small for this.”
In a way, her death was merciful, putting an end to her suffering. But it was sudden, and it left a deep hole. “This world is like that,” the proprietor of my mother’s favorite sweets shop told me when I visited her. In the prior three months, she had lost her mother-in-law, her brother-in-law, and both her parents. And though I knew many had suffered far worse tragedies than mine, the swiftness of my mother’s death gnawed at me. At times, I felt angry: angry that she had been so content to play a supporting role to my father’s, resentful of the light touch she had applied to my adult life. And, of course, I felt guilty. She’d complained of chest pains the night before she died. Should I have taken her complaint more seriously? As a cardiologist, I knew that one of every two women will develop heart disease in her lifetime, and one in three will die from it, two-thirds with unrecognized symptoms. Yet in my mother’s case, I suffered a blank. Rajiv had no patience with my second-guessing. “I don’t want to hear that you made a mistake with Mom,” he cried. “You did not, you did not, you did not! We will never know for sure what she died from. All we know is that it was a blessing.”
In physiology, there is the concept of referred pain, when an injury to a visceral organ is felt someplace else—as, for example, when heart injury causes arm or jaw pain. And perhaps so it is with emotional pain, too. What I was really feeling was remorse for neglecting my mother in her final days. I had been preoccupied, too focused on my own interests. In her last couple of months, when she was ill and terribly lonely, she would ask me when I was going to come to visit. Then, invariably, she would tell me not to come that day; it was too cold, too hot, or too wet—always something with the weather—and she didn’t want me to get sick. After her death, it was a daily struggle trying to keep such regrets from taking hold. But the person who would have fought hardest against them would have been my mother.
I wish she could have seen her funeral, witnessed the scores of friends who came from across the country. For someone who was content to cede the spotlight to her accomplished husband and children, she would have been shocked at how many came to pay their respects, not because of anything she did, but because of who she
was, which is perhaps the greatest accomplishment of all.
•
The ashes remained in my father’s closet for almost two months. He couldn’t decide whether to scatter them in the holy water at Haridwar, on the banks of the Ganges River in India, or in the Atlantic off the shore of Long Island. In the end, he elected not to make the long journey. So Rajiv booked a motorboat in Freeport, and we set off on a bright morning just after Memorial Day to submerge my mother’s remains. On a table on the boat, the priest opened a suitcase and arranged the items we would need: incense, cotton balls, the urn, a few edibles. My father, dressed in brown slacks and a yellow shirt, watched quietly. He had never been particularly religious, and it was clear that for him my mother’s passing, notwithstanding this last ritual, was over. As the boat sped hard over the waves, my belly churned. I had to keep my waist in contact with the priest’s table to keep from falling over.
The priest started off by placing a long piece of red thread on my and my brother’s heads, dangling down to our shoulders. He smeared tikkas of red paste on our brows. Next, he lit incense sticks and cotton balls soaked in oil. Rajiv and I made sixteen balls of dough, about the size of a donut hole, from flour, water, and milk and placed them on a metal plate, along with acorns, rice, and an assortment of seeds and other provisions, including holy water from Haridwar, that were supposed to sustain my mother in her journey into the afterlife. The priest unscrewed the top of the urn, and we sprinkled holy water on the plastic bag containing my mother’s remains. We then opened the bag and poured in more water and some milk, along with the items on the plate. Next, we emptied the contents of the bag into a white wicker basket. The ashes were charcoal gray; it was hard to believe that this was all that was left of the body. We placed the empty bag in the basket, too. Then we waited for the dust to settle.
Heart Page 21
