Heart Failure: The Art of Dying

If I could sleep with my arms round you, the ink could stay in the bottle. - D.H. Lawrence, Lady Chatterley's Lover

I walked into the Congestive Heart Failure Clinic to take my first dose of Coreg, a relatively new beta blocker, a medication that my new cardiologist, Dr. Harold, said had the potential to help me regain normal heart function - for a while.  The nurse who would be my case manager wasn’t there, so I met her colleague Olivia, a middle-aged woman with a concerned face and black, curly hair. 

Olivia called my name from the doorway to the clinic in a weary voice, which I somehow hoped indicated her concern for my welfare, and led me through a room of elderly men receiving intravenous medication.  For the most part, these withered men were reclined on hospital beds, either joking with each other and their nurses or resting with their eyes closed. Unlike me, they seemed to be enjoying their lives, even as their bodies were wasting away. 

We eventually arrived in a small room from which I could see two or three of the elderly men on their hospital beds. They never seemed to stop smiling and laughing. They obviously were strangers, but their common experience and acceptance of the inevitable decline of their bodies made them one. 

Again, I felt myself on the outside: separated from them by age and the absurdity of my being in their situation at such a young age. I had a lot to learn, you see, about the art of dying.

My room was filled with two chairs, an EKG machine, a TV and VCR unit, a small refrigerator, and a cabinet filled with what I assumed were hospital supplies.  Olivia, as if to add to the absurdity, asked me to lie down on a bed similar to the ones inhabited by the happy old me, and after I'd lifted up my shirt, she began hooking me up to the EKG machine.  She then told me that they always monitored their patients’ heart rate and blood pressure while they took their first few doses of Coreg.  They’d continue to monitor me in this way as they upped my dose every two weeks until I reached twenty-five mg twice a day, the maximum dose for my body weight.

I sat down and was immediately disconcerted by my heart, which I could still see pumping against my chest.  It was amazing that I hadn’t noticed it for the five weeks or so I had gone undiagnosed, but there it was, seemingly in the act of trying to leave my body of its own accord.  The strange thing was I didn’t feel sick.  After being on heart drugs for one week, I felt almost normal and couldn’t believe that I was on the verge of death.

But Dr. Harold had said, if you don’t start to improve over the next six months, you’ll be dead in a year.  Was I improving?  I certainly felt that I was, but I also knew from what little I had read that heart failure is a progressive condition that can worsen or get better fairly quickly.  What was happening to me?

After Olivia had hooked up the electrodes to my chest, I looked up at the EKG monitor.  My heart was still well over one hundred beats per minute.  Despite the drugs, my poor heart was still struggling to keep me alive.  Before I got sick, I had always had implicit faith in my body, never thinking for an instant that it would ever let me down.  Yet here I was, undergoing an ordeal that would hopefully prolong my life.

I was nervous and wanted to react well to the Coreg. Olivia told me that sometimes patients didn’t respond well to their initial dose and had to be treated for very low blood pressure.  As I've said, Coreg is a beta blocker - which means that it can slow down a CHFer’s heart rate and lower his or her blood pressure, thus preventing the heart from wearing itself out, at least temporarily.  I swallowed the tiny pill and didn’t experience any adverse reaction.  

After I had been seated and monitored for a while, Olivia brought me a box lunch.  I was sure to remind her of my low-salt diet, but she said that all of their food was low salt and that the men hooked up to the IV units were on low-salt diets too.  I couldn’t concentrate on my book - it was a new life of Dante written by R.W.B. Lewis - because Olivia was about to return and talk to me about the lifestyle changes I’d have to make. 

When she came in, she pulled up a chair to the little table that held my box lunch - which consisted of a turkey sandwich, a fruit salad, and some iced tea - and went over all the information we’d already heard upstairs in the Transplant Clinic.  She explained to me that I’d have to start reading the labels on food cans and packages to monitor my daily salt intake.  I was allowed only two thousand mis of salt or fewer a day.  I would also have to watch my fluids and drink fewer than eight cups of liquid a day.  This was because my weak heart wasn’t strong enough to pump a lot of fluids to my kidney.  I was very restricted, but for some reason, I didn’t care.  From the outset, my brain had told me that staying alive was the most important thing, and I was happy that I never had devoted my thoughts to food before.

In retrospect, I realize that even in that scariest of moments, when my life was changing forever, my pride and ambition (the attributes that Dante said would land him in Purgatory) were working in full force.  I arrogantly compared myself to friends and family who obviously couldn’t be as successful as I’d be watching my salt and fluids.  I thought about how many of them would fail and how their conditions would worsen.  But I would beat them and be the best heart patient who ever lived!  I’d be the star, just as I had read more than they, written more than they, published more than they, completed my degree in record time, gotten the best possible teaching evaluations...

This prideful longing to be the best would continue over the next few months, when I attempted to learn everything I could about my illness.  As I searched the Internet for information, I was afraid and wanted to locate the magic sentence that would tell me that everything was going to be okay.  Even as I knew that I would never find that sentence, I kept on searching.  I was afraid, just as I had always been afraid of myself, of just being myself with others.  This was why when I was a friendless teenager, I found so much meaning in the myths of Satan, Batman, and the Byronic hero.  In these myths, I found isolation justified as the necessary prerequisite for achievement and even art.

So that day when I got my first dose of Coreg, I was afraid in a new way.  I was afraid of death just as I had always been afraid of other people, and I felt that I was assuming the new identity of heart patient.

So the problem was that somewhere I had vanished, and the real horror of my situation was that I had nothing to fall back on.  My constructed identity - that of the Romantic intellectual and artist - was being forcibly driven out by a second constructed identity: the heart patient.  But being a heart patient wasn’t any fun.  There was no dignity in being sick.  There was no interest in being sick.  There was just hopelessness.  I felt as if the person I had always been had been suddenly swept out of existence and that a new person had replaced him.  This new person wasn’t interested in reading novels and philosophy, wasn’t establishing himself as a successful scholar and writer, and wasn’t the lover of music who annoyed his friends with his snooty attitudes.  This new person was a professional heart patient.

What did being a professional heart patient mean?  It meant many things, among them focusing my complete attention on the daily taking of medications, weighing, exercising, and eating and drinking right.  Being a heart patient was a total, full-time commitment.  It was the job that I’d have for the rest of my life.  I couldn’t see beyond this job, and with my extremist attitude about everything I’d ever done before - collecting Star Wars figures and baseball cards, becoming knowledgeable about records and musicians, reading literature, writing criticism and stories, being engaged and married - I had to enter that job with a drive that committed me to be the best.  I could only be the best and stay alive if that job received my total devotion.  I went from being a self-appointed man of letters to being a heart patient in fewer than five weeks.  I went from preparing myself to teach The Satanic Verses to preparing myself for a long struggle that would eventually end in death because, as the doctors and websites made clear, heart failure was a game I’d one day lose.

I’d lose my battle with cardiomyopathy.

My cardiomyopathy would one day kill me.

If I were "lucky," I’d qualify one day for a heart transplant, but my one kidney and chronic renal insufficiency would probably prevent this from happening.

Before the day I took Coreg for the first time, I always had considered myself to be an excellent reader. But today - and for a long time now - I understand that I'm learning to read. I'm learning to read the world around me. I'm learning that the old guys enjoying their final days were beyond suffering. I'm learning that there's more wisdom in their laughter that in a million Divine Comedies. 

But, most of all, I'm learning the art of dying - that, as Plato said thousands of years ago, life is preparation for death. 

Take what I have to say seriously: I don't have many talents. I'm essentially mediocre. I know this. But I want to do whatever I can to help every person with whom I come into contact to be prepared for the moment when they leave this material world.

This isn't an arrogant desire - I hope. My heart failure has been a success! It's taught me that I have to learn and, in my own tiny capacity, teach the art of dying.

Note: D.H. Lawrence published Lady Chatterley's Lover in 1928. His tuberculosis was terminal, he was dropping weight and losing strength daily. Every breath he took brought on more and more pain. But he kept writing. And he kept at it. And he kept at it...until his message - that the central joy of life was giving tenderness to other people, nature, and oneself - had reached millions.

Lawrence died in 1930, at the age of 44. His last words? "I'm getting better!" Indeed, he was.