Heartened

February 11th, 2011 by Charles Siebert

When illness strikes, an author reflects how a life on the edge – without insurance or a steady income – made him a huge responsibility for others.

Brought to you by Liberty Mutual's
The Responsibility Project

Three winters ago, at the age of 52, I came down with what I thought to be a recurrence of a bout of pneumonia I’d had years earlier. Having no health insurance or personal physician at the time, I went with my wife, Bex, to a nearby clinic. A doctor there listened to my lungs and immediately discounted the pneumonia theory. He next put his stethoscope to my heart and his eyes went wide. He said an echocardiogram was needed to get a better idea of what was going on with me.

“I can’t afford that,” I said.

“You can’t afford not to,” he said cryptically.

I soon found myself lying on my side, shirtless, in an adjacent room as a young blonde Russian sonogram technician in patent leather high heels and tight blue jeans passed her imaging wand back and forth across my chest, her head slowly swaying as she stared intently at the monitor before her.

“Dtt, dtt, very weak,” she kept muttering, “very weak…”

Naturally, I was quite eager to know precisely what she was seeing. Yet I also was struck by the sudden possibility that this was the same sonogram technician who, some five years earlier and displaying a similar lack of bedside manner, had been passing her wand over my wife’s then five-month-pregnant belly when she abruptly pulled back and announced to us: “Sorry, it is demise.” Now the technician pulled away her wand away from my chest and sat typing in figures.

“What’s wrong?” I finally asked her.

“I’m not a doctor,” she said. “You’ll have to ask him.”

Angels of death appear in all guises. Back in the doctor’s office, listening to his assessment of my exam, I was curtly informed that my heart was working at less than 10 percent of its normal capacity. Of the three stages of heart failure – mild, moderate and extreme – I was in the third.

“Wait,” I said, fairly reeling from the news. “Are you saying I’m going to drop dead any second?”

“I’m not your personal physician.” came the terse replay. “Ask your doctor.”

At the clinic’s reception desk, I steadied my hand long enough to write out a check I knew would empty our bank account. Over my shoulder, I could see my wife seated at the far side of the waiting room, her nose buried in People magazine. I waited until we got out into the stairwell to give her the news. As two freelance writers without children, we had long been used to surviving from paycheck to paycheck, failing to take responsibility for our future well-being with things like a steady income, equity or health insurance. We’d grown so accustomed to living on the edge, we’d forgotten how easily one can plunge over it.

In my more incautious moments, I’ve often found myself tracing the roots of my irresponsibility back to my family and my position in it. As the middle child of seven, it was easy to feel that I would always be buffered from life’s harsh realities and that the basic responsibilities (again – steady income, equity, health insurance) would somehow take care of themselves. Now, all at once, that outlook had made me what I never wanted to become in life: a huge responsibility for others.

On returning home from the clinic, I phoned my older brother, Robert. Ever since our father had died back in 1980 at the age of 59 from an incurable form of heart failure (which I now was convinced I’d inherited), Robert had assumed the role of my surrogate father, both as a major influence and motivating force in my life. He also found himself in the position of having to repeatedly warn me about the recklessness of my lifestyle; no doubt it was at the forefront of his mind as I told him the news about my heart. But he is far too gracious a man to say “I told you so.” All I could hear was how sick he was with worry, which in turn only sickened me more.

“I’m going to make some calls,” he said. “Sit tight. We’ll work something out.”

I hung up and promptly called the only physician I know personally. I first met Neal Epstein, a former cardiologist who would go on to become a leading research microbiologist at the National Institutes for Health, back in the mid 1990s, while writing a magazine story about the genetic roots of the form of heart failure that had killed my father. He later became the central protagonist of a book I’d write about the heart. He also became a friend. Like my brother, Neal pleaded with me countless times to get health insurance, if only the cheapest, catastrophic coverage. Now there I was at the other end of the line, a walking catastrophe.

He bypassed the scolding lecture and went immediately into his clinical mode, listening calmly and carefully to what the doctor had told me. He then said he wanted to explore a few options and would get back soon. A week later (with the help of a loan from Robert) I was on a train down to the NIH, where Neal had managed to enroll me in a study into the various causes and cures for people with heart failure. It was dark luck: my condition, whatever its cause might turn out to be, fit perfectly the criteria for taking part in the experiment; even if it didn’t help me, my participation would at least contribute to the knowledge that such research is designed to collect. Still, I understood just how fortunate I was, and I felt at once incredibly indebted and guilty. It was though my slacker approach had been rewarded, and I didn’t like it.

Over the next three days, I underwent an array of tests and examinations that otherwise would have cost me in the hundreds of thousands of dollars. As it turned out, I had not inherited my father’s disease. Rather, my heart had been attacked by a virus, which had also gone after my pancreas and caused sudden-onset diabetes. I was promptly prescribed a regimen of medicines and monthly follow-up visits, again all of it on the NIH.

And then Neal went a step further. In the course of one of my regular visits, I happened to mention to him one day in the cafeteria that I needed to get away somewhere. I wanted to deal with my recovery alone – the constant pill taking and blood-sugar testing; the four-a-day insulin injections that I’d been taught to give myself; the psychological stress. It also seemed to me the only way that I could complete the seriously overdue book that I was writing at the time. Neal listened intently. He then reached into his pocket and took out a ring of keys. He detached one and handed it to me: the key to his cottage in the nearby Blue Ridge Mountains.

“Take it,” he said. “My wife and I hardly get there anymore.”

I spent four months alone at that cabin, gradually weaning myself off the insulin and getting my heart’s strength back through medicine and light exercise. By the time I left, I was down to taking one pill for the diabetes and a couple more for my heart, a regimen I still maintain. I have since recovered at least enough of my heart’s former function to stave off a transplant – fully one-third of people attacked by heart viruses require one – and live a normal, active life.

The cabin also gave me a great deal of time in which to think, to take stock of my situation and start taking the steps necessary to avoid putting the people I care about in the position of always having to bail me out. Recently, I learned that in the days after hearing my bad news, Robert had assembled the family and begun pooling money for the mountain of bills it looked like I was soon to incur. But I’ve since gotten health insurance of my own and have made a point of securing a steady income as a cushion against future setbacks.

As for that book I was working on at Neal’s cabin, I did, in fact, finish it there. I dedicated it to Neal and to my siblings, the angels of mercy – those who at a moment’s notice and without judgment were willing to step forward and take responsibility for me and the things in my life that I should have.

Charles Siebert is a contributing writer for The New York Times Magazine and is the author most recently “The Wauchula Woods Accord: Toward a New Understanding of Animals.”