Test of the Heart

This is the story of a heart operation. It’s also the story of a marriage.

Photograph by Christopher Wahl

This is the story of a heart operation. It’s also the story of a marriage.

On September 11, 2002, the anniversary of the day planes smashed into the World Trade Center, my husband, Stephen, had three heart attacks. I found him trembling when I came downstairs after putting the children to bed. Twice in the past thirty minutes, he told me, he’d felt dizzy and nauseous, and had broken out in a cold sweat. He felt tingling in his arms. No chest pain, though, and both times it passed quickly. Stress, he said, or maybe indigestion, since his stomach was upset. He said he was fine, his face grey against the grey couch, and he was determined not to go to the hospital.

I agreed it could be stress. He had come home around nine that night, tired and hungry. Stephen was tired a lot in those days, and he sometimes fell asleep at his desk. He didn’t look well.

We had two young kids, driven careers, and never enough time. Why wouldn’t he be exhausted? But it went beyond that. Dating back to when I was on the road as a documentary producer for cbc’s The National, and later, when I worked as a tenure-track professor, Stephen had done far more than his fair share of the housework. Between that and his own deadline-driven work as a furniture designer, he was as busy as anyone I knew. There was no time to exercise, no time to relax, just an endless blur of domestic and work-related demands. That day, he had rushed from work to the pool to register our son for swimming class. Business as usual. Until it wasn’t.

Neither of us said the words “heart attack.” Stephen agreed to a compromise: if the wave of symptoms came back a third time, I’d phone. Otherwise, we’d forget the whole thing and get him to bed. As soon as I agreed to that, he went pale. I called 911.

The ambulance arrived right away. It stayed in our driveway for forty-five minutes, lights blazing, the brightest point in the darkness. The children never woke up. The paramedics ran tests and gave Stephen some medication. It didn’t feel real. The paramedics joked; Stephen joked. Then they drove him to the hospital. Better safe than sorry.

We’d gone to Europe that summer, and I still study photos, looking for clues that something was wrong. There aren’t any. All I see is a compact fifty-one-year-old man with a beard and a large smile, with his arms around his eleven-year-old son and eight-year-old daughter. But then again, should we have known? When we ran up the steps of Sacré Coeur, overlooking the night lights of Paris, Stephen couldn’t keep up. And then there’s the way he lugged our luggage up and down the steps of the metro stations and gasped for breath. Who knew what was waiting a few short weeks later?

When the children got up the next morning, I told them their dad had felt unwell in the night and had gone into hospital for some tests, but all was fine. My son took this in stride. My daughter looked at her brother, full of his usual high spirits, and burst into tears. “He doesn’t hear what you’re really saying,” she said to me. Really saying? In retrospect, I realize how odd this was, because I didn’t think I was worried. The paramedics had been surprised when Stephen walked himself out to meet them. As their ambulance lights glowed in the driveway, they’d even questioned whether he needed to go to hospital. That had to count for something.

I got the children off to school and phoned the hospital. Stephen sounded tired but in good spirits. They’d done a preliminary blood enzyme test, he said, and he hadn’t had a heart attack, but the doctors suspected he might have one in the future if he didn’t change his ways. “Good,” I thought, “he needed this kind of warning to slow down.”

They kept him there to run another precautionary test, and I headed for the hospital. This time, the results were different. Stephen would need an angiogram the next day. We reassured each other that everything was fine, but now the train was picking up speed.

We were told angiograms are pretty straightforward affairs. So when I got the call to meet Stephen in the recovery area, I was very calm. When I walked in, he was lying on a gurney and couldn’t move because he had a tight clamp around his leg to staunch the flow of blood. He had a look on his face I’d never seen before. I remember with great clarity what happened next, because things went into slow motion. He had some bad news, he said. He’d had heart attacks in spades: three last night, and at least one silent one within the past five years. His heart was so badly damaged that the doctor suspected that the condition was inoperable. And then my usually stoic husband burst into tears. “I’m sorry,” he said. I kissed his face. I held his hand. I told him we’d get through this together.

To understand what a turning point this was, you have to know that our marriage had been volatile for years. We talked often, usually loudly, sometimes sadly, about divorce. I met Stephen on a blind date set up by my sister. It hadn’t gone well, but I gave it a second chance, and things improved. By our third date, his sense of humour and warmth started to win me over. And then there was the deal clincher: he smelled better than anyone I’d ever met, warm and sweet and sexy.

We spent a lot of time analyzing our relationship, looking for the unwritten contract that every couple unknowingly signs. As someone who had been self-supporting since the age of sixteen, to feel taken care of, to be cooked for and catered to was a treat. Stephen, on the other hand, wanted excitement. On our first overseas trip together, his first time off the continent, I took him to the Atlas Mountains of Morocco, and he scaled the highest peak in North Africa. He pored through the books in my library. We shared a love of art and theatre. In 1984, we moved in together; then, in 1986, we married.

But vipers soon found their way into our marriage. Stephen felt put upon, resentful that most of the domestic drudgery became his responsibility. I hated his hair-trigger temper; he didn’t much care for mine. Our fights were loud, dramatic, and dangerous. I threw plates. He punched holes in doors. I screamed about wanting a divorce. He called me names. When he tried to leave to cool down, I blocked the front door. Even in the white heat of our tantrums, I couldn’t bear for him to turn away.

We haven’t fought like that, like enraged six-year-olds, for years. Stephen says we’ve matured, but I think it’s more than that. Unquestionably, the heart attacks put us on the same team. We both knew there wasn’t a scrap of energy or time to waste. Suddenly, we were allies fighting for survival.

I called Stephen’s mother in Ottawa as soon as I got home. Until we had concrete results, we hadn’t wanted to worry her. I played everything down, but she wasn’t fooled. She arrived the next day with Stephen’s sister.

Stephen has a close-knit Jewish family, and you couldn’t do better in a crisis than to have them on your side. While we waited to hear whether anything could be done, they cleaned. Cupboards that hadn’t been dusted in years were cleared out. Cracked plates were tossed out. Light fixtures were removed and washed. In between, the kids were driven to lessons, hugged, and spoiled.

Friends, colleagues, and family rallied round and made life bearable. However, during that time a relative of mine accused me of causing Stephen’s heart attacks. Well, did I? As I built my career and left him to make the dinners? As we had yelled our way through yet another Sunday morning, even though we never so much as raised our voices to anyone else? I had to ask myself that question as I lay in bed, unable to sleep. But medically, it’s much more complicated than that.

Many in Stephen’s family had died young. I knew this. However, there was a nasty surprise in store. Nobody had ever spelled out the legacy of heart disease that dogged the family, until his mother sat on his hospital bed and drew a diagram. His maternal grandfather and grandmother had died of heart attacks at forty-two and sixty-three, respectively. Of his mother’s eight siblings, six died young of heart attacks. Since many of them had also had cancer or diabetes, we hadn’t made the connection. Most were dead by the time we married, but how could we not have known?

Now we were fighting back. First there would be a thallium stress test, to determine which parts of Stephen’s heart were receiving blood. Two days later, an angioplasty, a procedure where balloons are inserted into arteries to keep them open. I couldn’t write down questions fast enough: Prognosis? Odds? Next steps?

As we waited, Stephen shared a room with Frank, a successful businessman with a close family. He was sad and disengaged much of the time. But when the phone rang and Stephen told Frank’s wife that her husband wasn’t available at the moment, that he was off hang-gliding, Frank laughed. He had routine valve surgery a day later, and died on the table. The line between life and death was thinning.

Stephen’s thallium test showed extensive damage. Two days later, he went for his angioplasty. It didn’t work. Again, there was too much damage. We waited to find out if he was eligible for bypass surgery.

I didn’t know this at the time, but doctors expected him to die. You don’t operate on a heart that has just suffered an attack unless you have to. You wait until the heart is stronger. But in Stephen’s case, time had run out. He was scheduled for emergency quadruple bypass surgery without further delay.

The family continued to rally, and Stephen’s older brother came to Toronto. I know now that he packed a dark suit, just in case. So had Stephen’s mother. I’m glad I didn’t know at the time. I fully expected Stephen to make it, against all odds. We had to have a second chance.

I split my time running between the hospital and the downtown campus where I taught, and I moved into the nurses’ residence to be closer to the hospital. The children coped. They took on extra chores, made their lunches for school, and, twice before the surgery, visited their dad. As Stephen completed yet another test and lay on the bed exhausted and slightly radioactive, they snuggled under his arms. The nurses said a minuscule amount of radiation was a fair trade for time with their dad before surgery.

Later that day, a doctor came in to talk about the operation and, music to my ears, its aftermath: how long before Stephen could climb the stairs, how long before he could pick up a bag. Half-jokingly, I asked how long it would be until Stephen could have sex. The doctor looked at me scathingly. I kept quiet after that.

Stephen has virtually forgotten what happened during the three days before the operation. That’s not unusual after major surgery. He does, however, remember the social worker coming in and sitting with us as we wrote up a power of attorney. He remembers how carefully we thought through the request that heroic measures be used unless there was no hope. And he remembers joking around with the social worker about being part of the three-foot-under club — in other words, half dead.

But Stephen has forgotten everything else. He doesn’t remember the most surprising and reassuring thing: how sex is the most rational response to standing on the precipice. Two nights before the operation, we drew the curtains around his bed and shocked the nurse who entered unexpectedly.

The surgeon came by the next night. Tall, lean, well-scrubbed, confident. He was perfect. If you could trust anyone to cut open your heart, he was your man. Later we learned that he was the only doctor in the hospital who felt he could handle the delicacy of the operation on such a damaged heart within days of multiple attacks. Stephen told him to get a good night’s sleep. The surgeon told us he was optimistic. Then he left, and Stephen and I once again drew the curtain around the bed. They’re right, those who say that Eros is the opposite of Thanatos.

That night, in my unfamiliar room in the nurses’ residence, I dreamt I was skateboarding around a large bus terminal. I fell. A bus backed up, and the wheels stopped on my chest. It didn’t crush me. I survived.

Early the next morning, Stephen joked with the aides prepping him for surgery. They were laughing as I walked into his room. The nurse’s aide told him he didn’t need a plastic cap to cover his hair, since he was bald. He said, “I’m here to be operated on, not insulted.” The atmosphere was closer to that of a frat party than the lead-up to a life-and-death operation.

I held Stephen’s hand as he was wheeled toward the surgical ward. He looked at me intently. This time, he wasn’t laughing. “I guess this means we’ll never make it to Greece,” he said. That was a country he’d always wanted to visit. I willed my strength into his body. I told him I loved him.

And then it was my turn not to remember. I spent the day at the hospital with Stephen’s brother. It passed in a blur. Around noon, the surgeon came out to give us a report. Stephen had done well, thank goodness, but they had to downgrade the operation from a quadruple to a triple bypass, as one artery was too small. They would keep him unconscious until his heart was strong enough to deal with waking up.

First they said it would take twenty-four hours. Then forty-eight. The clock kept ticking. Stephen’s blood pressure was dangerously low. Whenever I asked how he was, whenever I called in the middle of the night, the nurse said, “As well as could be expected.” Those are words I don’t ever want to hear again.

On the third day, they let Stephen regain consciousness. In a voice that was beyond scratchy, and from behind the oxygen mask, he rasped, “I’m alive,” as if he couldn’t quite believe it. Slowly he began to regain his strength. It was a landmark day when he could hold my arm and walk around the ward. He moved like a man 103 years old, but he was on his feet. It was a start. A week later, he came home.

Eventually, our lives returned to something resembling normality. I did the grocery shopping, one of Stephen’s chores for years. I learned how to zip through the aisles quickly. But I worried terribly about how expensive everything was, since he now had no salary and no short-term disability coverage. At the nadir, I considered hiding big packages of toilet paper below the shopping cart and not paying for them. I worried about losing the house, and met with the bank to see about extending the mortgage.

On the worst days, I resented it all: the fear in the pit of my stomach, the extra work, carrying the financial load. I comforted Stephen and massaged his back when he couldn’t sleep. And I thought, who will do this for me when I’m old and ill?

At first, I thought I’d learned, that I knew now what was important. But old habits die hard. If anything, I worked harder than ever. Work had always gotten the best, most competent part of me, and that wasn’t about to change.

On the best days, I felt capable, exhilarated, the provider and nurturer extraordinaire. I realized that as much as I loved freedom when I was younger, the ability to pick up and go to Thailand on a moment’s notice, I knew now how much I enjoyed responsibility and how much meaning it added to my life.

But I also learned how things can sneak up on you at unexpected times. Shortly after Stephen returned, my daughter was playing a CD, a sappy Barbra Streisand recording with the words “Nothing’s gonna harm you, not while I’m around,” and I burst into tears. I’m not sure if I was crying for Stephen, for the children, or for me — probably for us all.

We stayed up talking every night, often until two in the morning. Stephen needed to replay what had happened, over and over again, and he wanted an exact chronology. We kept trying to make sense of it. We reminded ourselves that he would be back to work within three months. We tried not to worry about money; the priority had to be Stephen’s health.

He slept most of the time, but he was still having trouble breathing, and his health was not improving. The doctors said that he had congestive heart failure as well as arterial disease. He began taking eighteen pills a day. But he still talked with enthusiasm about returning to work, an idea that kept him going.

It was not to be. The pills and the lack of oxygen to his heart meant he had to sleep for an hour or two every three hours. We kept waiting for this to change, but it never did. His life became a parade of doctors’ appointments. Nine months later, Stephen had a defibrillator inserted. As he lay in recovery, the doctor told us that he would never be able to work again. By then, he was entitled to long-term disability, which paid a proportion of his old salary. We had turned a financial corner, but not being able to work is a horrible sentence for someone who loved his career.

Today Stephen has to walk for his life. Without intense exercise, he would die within a year. So he gets on the treadmill, puts on a loud action flick, and buckles down. His arteries continue to block, but the exercise creates new arteries that stave off much of the damage. The medications also help, although we try not to think about what they may be doing to his kidneys and liver. In a few years, he will need repeat bypass surgery. In the meantime, he’s protected by the defibrillator, which looks like a pack of cigarettes under the skin. It will kick-start his heart if necessary.

I wonder if I’m doing enough. I still have my beginner’s driver’s licence. Whenever Stephen talks about how sick he is, I think I should get my permanent one. I think I should learn how to fix the plumbing. But such thoughts are fleeting.

It’s been hard on the children. My daughter was once happy to go away to summer camp on her own. After the heart attacks, she became unable to sleep over anywhere, even at close friends’, for a while. In the early days, she changed her email address to an acronym of “my father will not die.” Once, we rushed her to hospital with a panic attack, whose symptoms mimicked those of a heart attack. But both children are doing well in school, and I’ve overheard them telling friends that this experience has made us stronger as a family. Still, Stephen mourns the loss of his job and worries about meaning in his life. Right now, his main role is as a parent. But the children are older, and one day they will leave. When things aren’t going well, he complains about feeling useless.

But if Stephen’s life is useless, that means it counts for nothing to be a good parent, a good husband, and a friend. If that’s the case, every stay-at-home parent’s life, every senior’s life, every unemployed person’s life, every ill person’s life, is without value. This can’t be.

Not long ago, I had a medical scare of my own. A test suggested my kidneys were failing. Stephen’s first reaction was to offer to give me a kidney, even though he clearly wasn’t well enough. As it turns out, I was okay, but I had endless nights to consider the implications: I want to be around to take care of those I love, for Stephen’s next bypass surgery, and to guide and provide for my family.

The battles aren’t over. Recently, Stephen’s insurance company terminated his long-term disability payments. That’s the equivalent of a financial tsunami and means a return to the heart-pounding fear that everything I earn will never be enough. Stephen has been sitting at his desk, late into the night, calculating budgets. We’ve both been finding it hard to sleep and to eat.

However, we’ve been through plenty. We’ll come through this, too. And there are far more good days than bad. When I look at the video of our wedding speeches, twenty years ago, they are glib and flip. We know now, beyond any doubt, that when the going gets tough we can count on each other. And in the meantime, we don’t put things off anymore. Just last year, we made it over to Greece, the place Stephen never expected to see.

The heart is an extraordinary organ. It’s the size of a fist and weighs less than a grapefruit. But the heart proves again and again that it can persevere against all odds. Just like our marriage.

Marsha Barber