Heal Thyself: Taking a Fatal Diagnosis Into His Own Hands

 Illustration by Noma Bar

The sickness settled in subtly. I'd had a sore throat, fever, and congestion in the early fall of 2007, followed, a few weeks later, by an odd inner-chest rattle that my wife, Bex, noticed while I slept. The more overtly troubling signs, however — the weight loss, the "ghostly gray" complexion that friends would only later feel free to remark on — somehow escaped both Bex and me, lost, I suppose, in the image-amending myopia that sustains any close marriage. Even after experiencing a sudden shortness of breath while walking one December evening to a pizzeria near my home in Brooklyn, I still suspected nothing more than a recurrence of the pneumonia I'd suffered 10 years earlier.

A few days later, I was sitting at the edge of the doctor's examining table, dutifully breathing in and out to the cold march of the stethoscope across my back, confident that I'd soon be sent home with a prescription for antibiotics.

"Hmm . . ." I could now hear the doctor saying. "Your lungs are perfectly clear."

More presses of the stethoscope, some quizzical head tilts, and then I was being wired for an electrocardiograph. I watched the doctor watch the furling ECG readout. We've all seen our share of these over the years from routine physicals. This looked nothing like those. This was the cardiac equivalent of a 7.2-magnitude earthquake.

"I don't know what's going on," the doctor said. "But your heart is all over the place."

I was told to return the next day, a Friday — December 14, 2007, my 52nd birthday — for an echocardiogram to get 3-D sound-wave images of the heart. The results were not encouraging. In an average healthy heart, the "ejection fraction" — the percentage of blood pumped out of the heart's left ventricle with each beat — is about 60. My heart, I was told, was registering at only 18 percent. I was in the final, most extreme stage of heart failure.

Dire news induces the strangest sensory whiplash. Your mind careens between desperation and denial. I clung to the latter. How does one go from a sore throat to death's door? Aside from the shortness of breath and the nightly chest rattle, I really didn't feel all that bad. There was no way these readings were right, and I was determined to prove it at the next day's scheduled stress test.

I'm an old jock. In high school, I was offered a tryout with the Pittsburgh Pirates. I was recruited by a number of colleges to play football. I decided against it, but back in 1988, I was able to live out my ultimate jock fantasy when I was asked by my friend John Sayles to play the Cincinnati Reds catcher Ivey Wingo in his movie Eight Men Out. I hit a single in game one and feign a key strikeout later in the series. You can check it out for yourself.

The stress-test physician — a tall, slender brunette in a tight-fitting skirt — may as well have been my fat high school football coach, perched at the top of the running hill at the end of another steamy August double session, screaming high-pitched inanities like "You don't really want it!" The physician wired up my chest, got me on the treadmill, and flipped the go switch. I'd show her the way I once did the coach, day after blistering day, reeling off 10 straight first-place ascendancies.

"Stop," I now heard her shout, the treadmill slowing to a halt. "Get off. I'm sorry. Your heart was behaving way too erratically. I couldn't take a chance."

She placed me in a wheelchair, then pushed me down an outer corridor toward the waiting room. An image flashed in my mind of my 78-year-old mother being wheeled out of the operating room seven years earlier, having just learned that her lung cancer was inoperable. Wigless, she looked from behind like a frail felled nestling, her right arm flinching with each angry fist punch into her lapped left palm.

Allow me to commence here with the clichés: my life's lowest moment. A cosmically dark joke. Here's how dark: My mother, at least, lived until nearly 80. My father succumbed at only 59 from, yes, heart failure. I knew heart failure — my father's struggles and my own pathetic heart paranoia and hypochondria, demons I eventually decided to slay by writing a damn book about the heart. As part of my research, I'd spent hours at the Columbia-Presbyterian Hospital in Manhattan one winter with the hospital's transplant-waiting-list patients, all of them tethered to IV poles that pumped drugs directly into their dying hearts to keep them beating. "Pole people," they called themselves. Even at rest, they were exhausted. They gained weight without eating, their extremities pooling with fluid for lack of circulation. Often at night, unable to lie back and sleep for fear of drowning, they'd wheel down the hallway to the solarium to watch out the window for the threads of ambulance lights through the city streets below, wondering which one might be bearing their last chance at life.

PREHAB: How to Injury-Proof Your Body

Somehow I'd become one of my own book's subjects, had either worried my heart sick or inherited the same disease that had sickened my father's. Neither scenario, however, turned out to be the case. I had, I soon learned, contracted a heart virus. There are a number of such viral assailants but only three possible outcomes. Some of those stricken regain full heart function. Others get partial restoration, a kind of limbo in which they then try to maintain the heart function they have left with the help of medication. The rest join the pole people at the solarium window. Victims typically know which outcome will be theirs within nine months of becoming sick.

Far worse for me than the iffy odds was the news that there was nothing I could do physically to get better. No defiant charges up the hill to quiet my antagonist. No cardio exercise regimen to work my heart back to health. My only recourse was anathema to me: a kind of vigilant inaction during which it was hoped that a combination of medications and rest would give the heart a chance to repair itself.

The subsequent six months passed in pale, shimmering twilight. Even a modest walk from our Brooklyn apartment down Eastern Parkway to the Long Meadow of Prospect Park would set off prolonged flurries of skipped heartbeats, the resulting breathlessness making days flicker and flare all white, like unsprocketed film through a projector. My medication only heightened this effect, lowering my blood pressure to the point where I was on the brink of passing out. I was in a fugue state that somehow made the mutual game of denial that both Bex and I had now begun to play easier, as if the whole business were just a really bad dream I'd soon be waking from.

Inside, of course, I was terrified. Being so close to death had rendered me a rat at a tray of poison, trying now to find sustenance from what was sickening me, feeling suddenly grateful for what had previously seemed my life's deficiencies. The fact, for example, that Bex and I had not had children. Now, at least, she'd be the only one abandoned. At the same time, I had become so perversely caught up with what was happening to me, I had no time for her concern. It was as if I were having an affair with my own malady.

By the end of that first summer of sickness, my ejection fraction was only up to 25. My heart was steadier, less skippy. Still, I would have to remain on medication for the rest of my life. I knew enough both from my father's experience and my own heart research that the long-term prognosis for those dependent on heart medications isn't very good. My cardiologist surely knew this as well. Every time I'd broach the subject, he'd deflect my questions with vague comments about varying outcomes and everyone being different, or the dubious assuagement that, given my relatively young age and the good condition of my other organs, I was "an excellent candidate for a transplant."

NUTRITION: The Benefits of Occasional Fasting

Condemned now to an ongoing twilight, I fell into a deep depression. The deletion of my physical vigor was soon robbing me, in turn, of my mental vitality, underscoring just how muscular the act of writing really is. If that was no longer available to me, I had no idea what I was going to do. And then, one late-autumn morning, I abruptly stood up from my desk in the midst of what were typically my prime writing hours and decided to go instead for a walk. I felt as though I were about to board a plane for a far-off land, perhaps never to return. Bex, a work-at-home writer like myself, intercepted me at our apartment door.

"Where the hell are you going? You never go out at this hour."

"I don't know," I told her. "I'm just going out."

I ended up only about a mile away, down at the Prospect Park Zoo, sitting in the Animals in Our Lives indoor pavilion, transfixed by the meerkats. They live in a glassed-in, climate-controlled simulacrum of their typical Kalahari Desert day: a clan of  20 or more happily foraging about, playing games of chase through a hollowed-out log, occasionally standing bolt upright in that hyperalert, head-swiveling meerkat lookout pose. It was as though their displacement had never happened, as though nothing were any different.

To be healthy, it occurred to me, is to be fully immersed in the motion picture of our days. Since my very first diagnosis, all I'd been hearing were the sounds from the projector room, wondering if the motor was going to give out. However pale an imitation of my former life I was now living, I had to find a way to somehow wholly commit to it.

All through my diagnosis, subsequent testing, and recent prognosis, no one had ever explicitly spoken to me about what I could or could not physically do. Only that exercise wouldn't make a whit of difference for my heart where the actual damage had been done: at the cellular level. Still, the brain being its own alignment of cells, can't we, I began to wonder, argue a bit with our own biology? As grave illnesses go, my viral assault had left me in a fairly privileged place: diminished, yes, yet not wholly incapacitated. Aren't there instances, I wondered, in which those with a sickness can consciously will themselves away from its effects? The mind and the flesh being one, it would, I thought, be like a body of water trying to work itself up into a wave — one that might eventually break and settle again on some former, more familiar shore.

One often hears stories of mental healing, of overcoming physical illnesses through sheer will. There was, however, no regimen I knew of for such a process. I'd simply try not to be sick. Clearly, I wouldn't be training for a marathon; even a light jog was out of the question for me at that point. Daily walks, however, seemed doable. I'd simply go out walking. Armed with a heart-failure dog tag and a cell phone, I'd bid Bex goodbye and set out. I'd have no particular destination in mind. It was more about getting out, seeing how far I could go, and then getting back home.

After that summer's middling echo result, a discussion had ensued about whether I should get an implantable defibrillator. People with ejection fractions as low as mine, the doctor explained, are more prone to fatal arrhythmias. A sudden electric jolt to the heart could save my life. It struck me, at first, as a no-brainer. Then the doctor began detailing the downsides, including frequent errant shocks and recurring infections. Many other patients, he also warned, experienced a tyrannical hyperawareness, as he described it, of the threat of sudden death. That, I thought, is precisely the thing I'd been determined to overcome. I told the doctor I'd rather take my chances.

That decision lent those daily outings of mine a certain high-wire-act feel. I was terrified at first to venture far. The meerkats became a safe and frequent go-to. The perimeter walkways of the nearby Brooklyn Botanic Garden were another. Whatever my heart was making of all this, I, at least, began to feel steadier and more sound, fully immersed in my days, seeing life again, greedily, gratefully.

And then one Sunday evening in late July, my older brother, Robert, called and delivered the kind of jolt no heart wants. Marion, he said, the youngest of our four sisters, long plagued by anxiety and depression and, at age 48, still living by herself, had jumped to her death from the roof of a six-story parking garage. My walks expanded greatly after that. Somehow, the ferocity of my sister's death and of my own aggrieved and deeply confused anger over it, fueled in me an equally ferocious will to live. Each day, I'd go out, walk, and not die: a fairly clear-cut regimen that, if nothing else, definitely had a way of building on itself.

By the time I returned to the doctor later that fall for what would become my regular six-month checkup, I was walking an average of two miles a day and had worked my way back to 50 of my former 70-straight push-ups. The doctor couldn't get over how well I looked, remarking that there was no way my ejection fraction could still be 25 percent. We then proceeded down the hall to the echo room and, in what was to become a sickening routine for me over the coming years, I watched his crestfallen face read the same lackluster numbers.

I had entered a new twilight phase: an inexplicable disparity between what my heart's readings said and the way I felt. Soon, I was walking the entire 3.4-mile ring road around Prospect Park, eschewing our building elevator for the six flights of stairs to our apartment, and doing the full complement of 70 push-ups. By the spring of 2010, the very doctor who'd originally warned me about, among other things, the risks of flying for someone in my condition, gave his blessing to an expedition to Baja, Mexico, to research a story about Pacific gray whales. The following year, I was off to the jungles of Kenya for a story about elephants, and then to Ethiopia to write about ancient farming practices.

Back at the cardiologist's office every six months, we'd go through the same paces: Vital signs good. Blood pressure perfect. ECG normal. We'd then make the slog over to the echo room. Amazed comments from my doctor about how he knew people with my ejection fraction who were in wheelchairs were anything but heartening. I didn't know whether to feel flattered or fraudulent. Any day, I kept thinking, this extended grace period will end and the real heartbreak will set in.

By now I was seeing the cardiologist just once a year, each December right around my birthday: a convenient if bittersweet way of marking both the years since I first fell ill and the remarkable persistence of my halfheartedness. Indeed, two Decembers ago, with all of my test results still holding steady, I finally asked the doctor if we couldn't just skip the echo this time around.

"Look," the doctor said, "it will only take a few minutes."

Lying on the examining table, I rolled onto my left side, stared at the wall, and waited. Every so often the echo's imaging wand was lifted from my chest, and I'd hear the doctor fiddling with knobs before resuming.

"Wait," he said. "This can't be right."

The doctor had me get dressed and then escorted me to a more sophisticated machine to certify the figures he was seeing. He ran them through three times before averaging the results. He then printed out a copy and handed it to me.

"You'll want that as a keepsake," he said.

My ejection fraction was now between 45 and 50. It had doubled. My doctor had never seen anything like it and was at a loss as to how to explain it.

"Whatever it is you're doing," he said, "keep doing it."

I read once that the heart has a sort of brain, too. Or at least a deep muscle memory. Transplant recipients, it is said, regularly adopt the personality traits of their donors. Why then, I had often wondered, couldn't my heart recall its role in my former life? My cardiologist, when I'd first posited this notion to him years earlier, thought it quaint. Now I find myself falling back on those vague dodges of his about varying outcomes and everyone being different. I'm ultimately as clueless about my recovery as I was when I first got sick. All I do know is that I've somehow worked myself back into life's picture. I refuse to take the role lightly.