The Ninefold Path: A Memoir

Preface

That nauseating headache is back. Neck and shoulder muscles pull tight as if fastened by bolts and screws. The headache clasps down to the forehead; the screws have become iron clamps. Nothing can be done. No drug will loosen the muscles. Roughly ten years ago, identical headaches were the first indication of chronic illness.

I'm just off dialysis. It is 11 a.m. on a Wednesday. This morning, around 6:15, I arrived at the dialysis clinic to wait with other patients in an anteroom until my assigned nurse came to escort me into the hemo-dialysis unit, a cavernous room of machines and large, sky-blue chairs.

By 6:30, if the sticking goes smoothly, I'm on the machine. For the next three and a half hours, the machine circulates my blood through a labyrinth of plastic tubing and filters, removing toxins from my body, partially replacing my failed kidneys. Without this treatment, three days a week, three and a half hours a session, I'd be dead in a week—at best, three. I'm on a short leash.

The doctors say the fluid shifts during treatment cause the headaches—not always, but frequently. In a few hours, the machine must filter the excess fluids healthy kidneys process every hour of every day. On dialysis one fondly recalls the feeling of a full bladder and the precious act of urination.

Hence the headaches, washed-out feeling, nausea, overall stress on the body—but ten years ago the cause was something quite different. Then I suffered headaches due to hypertension. The headaches, ten years ago or today, are indistinguishable.

Every dialysis headache brings with it a nagging question: How did I get into such a mess?

The medical profession possesses excellent rational answers: My father suffered from End Stage Renal Disease, ESRD (irritable kidney patients often find the medical penchant for acronyms annoying). Yet my father labored his entire life in the Navy and heavy industry, handling toxic chemicals. To the day he died, he blamed the destruction of his kidneys upon environmental causes. Now we realize that genetic factors probably play a more significant role. Our kidney failures were caused by hypertension, ninety percent of which is inherited. Not knowing these facts, I lived under a false sense of security.

This illusion was born of other factors. I do not work in heavy industry; rather, I float through my days, a college professor, teaching at most twelve hours a week. I ran marathons and other distance races for over twenty years. Long distance runners, we are told, should not suffer hypertension. While running, the blood pressure increases; afterward it falls, usually lower than normal. Mine, apparently, remained elevated.

Sometime in my teens, perhaps it was seventeen or eighteen, I read Hermann Hesse's Siddhartha. Since that time I studied and practiced Buddhism, meditating regularly. These days we are told by self-satisfied, smiling popular gurus that, among other benefits, mindfulness helps lower blood pressure. Thus have I heard on Oprah, if I remember, a slick Buddhist teacher brag about his age, how young he looked and how mindfulness was a cure for stress. Much later did I realize—thanks to the true Buddhist teaching of my own illness—how unenlightened, how mesmerized by the ego-self many of these so-called modern saviors are. More on that later.

My blood pressure remained elevated.

Some fifty million Americans suffer from hypertension. Every year, high blood pressure causes more than fifteen thousand new cases of kidney failure in the United States (over a hundred thousand people are on dialysis in the United States, more than twice that number around the world). Diagnosed with hypertension, one is advised to lose weight, exercise, cut down on alcohol, salt, eat less meat and fat. Running a marathon of twenty-six miles, three hundred and eighty-five yards in two-and-a-half hours (my time) generally requires an excessively healthy lifestyle. And I was excessive!

Yet I had hypertension, and there were hardly any symptoms. Thus I foolishly—combined with excessive hubris—avoided medical checkups. Then, in the late 1980s, came the frightful headaches. Finally, in the spring of 1992, I went to a migraine specialist. By the time I found the right specialist, the chronic high blood pressure had severely damaged my kidneys' blood vessels (reducing blood flow and thus the organ's ability to filter waste products) and nephrons (the structural unit of the kidneys performing the mechanical filtration).

Tests performed in August and September of 1992 revealed that upwards of sixty percent of my kidney function had been permanently lost. I was immediately placed on blood pressure medicine.

With pressures under control, the renal physician advised optimism. You're not your father, he said.

I heard that one.

What I chose not to hear was, Of course destructive processes once begun in the kidneys usually continue to complete failure. No one knows why.

This prophetic renal oracle I ignored. For me, a kind of anti-Oedipal renal syndrome did quite nicely. I was not my father! Nor, witnessing his dialysis battles, did I ever want to be!

By May of 1993 renal prophecy could no longer be denied: A four-hour Glomerular Filtration Rate (GFR) test established beyond doubt kidney death. I was injected with a low dose of radioactive material acting as a marker in the blood and urine. Hourly urine samples revealed the amount filtered by the kidneys; blood samples drawn from a catheter in the arm measured the amount remaining in the blood. More in the blood and less in the urine means kidney failure. My ratio indicated declining function.

I came home nauseated and depressed—with a headache—only to find one of my manuscripts returned with a nasty rejection note (the novel was eventually published and has since gone out of print). My blood pressure began to inch up. I ignored it and went for a run (mindfully). I was not my father (illusion).

Roughly five-and-a-half years later, on Monday, September 14, 1998, I stumbled into the dialysis clinic for my first treatment. I had come to the end . . . End Stage Renal Disease.

During my journey through chronic illness, I maintained a kind of personal log, haphazardly jotted notes, mostly those emails to Yakob (and his replies), recording as if in a laboratory experiment the bare facts of the case. Only now, after a decade has passed, am I foolhardy enough to attempt some meaningful interpretation.

Memoirs are not autobiographies. A memoir, says Gore Vidal in Palimpsest, is how one remembers a life. Autobiography is history, requiring research, checking the facts, establishing the dates and the causal flow of events. Sometimes I wonder if the distinction is all that sharp. History, too, may be a kind of professional memoir: how and what the historian remembers.

And how does one remember? Surely memory is hitched to present experience. Today, under the spell of dialysis, driven by headache, the constant throb of pain has churned the sluggish pool of memory. What can be learned from the memory of a chronic disease?

The philosopher Friedrich Nietzsche, a fellow headache sufferer, says that in the mountains the shortest way is from peak to peak. But for this path one must have long legs. Memory in these idle moments, befuddled by pain, is like this. A memoir is leaping from mountain peak to mountain peak, recalling significant experiences. To change the metaphor: A memoir is wave crests on the surface of the boundless ocean in endless motion—the always changing, moving peaks of life.

But maybe the true story haunts those dark, misty valleys? Perhaps I need to point my light down, into the depths?

This memoir represents pieces of memory, musing, while awaiting a kidney transplant. Here are fragments of images and thoughts, experiences, observations—the tissue of life torn apart by chronic illness.

I call it The Ninefold Path. Why this odd title?

Twenty-five hundred years ago, near the ancient Indian town of Gaya, a young prince named Siddhartha Gautama of the Sakya Clan found a tranquil spot beneath a sacred fig tree. There he seated himself and vowed, Let my body rot, my bones be reduced to ashes, but I will not get up until I've found the way beyond decay and death.

We are told that the moon arose, the first full moon of the first month of spring. Beneath this moon, firm in his determination, the prince passed into meditation. Legend—another sort of memoir—tells us the results of this important ancient night. The Hindu god of illusion, Mara, vainly tried to distract the prince and get him to break his vow. But the dawn came, Venus appeared, a breeze came up and showered the seated one with blossoms.

Siddhartha awoke. He'd blown out the last shreds of ego-illusion. In Sanskrit the term blown out is usually translated as Nirvana. Siddhartha had become the Buddha, the Awakened One.

Mara, the legends tell, came back and saluted him: Well, Buddha, you've seen and done what no one else has seen and done. But what now? How can you bear the company of others? Who among the ignorant people can grasp your experience? You'll be treated as a fool, laughed at.

Mara told the truth. Yet, the Buddha went out into the world, knowing that he would ultimately fail. He nonetheless gave voice to what could not be set in flimsy words. His compassion for the suffering of all sentient beings drove him on. His compassion demonstrated perfect enlightenment. To speak to fellow sufferers, to speak for those that suffer . . . it was (is) an impossible task.

Words do not bear the weight. Language can only point. West of India, near Ephesus in modern Turkey, the Greek philosopher Heraclitus knew: The god of Delphi, he supposedly said, neither speaks nor conceals, but gives a sign. Words indicate.

The Buddha came to the Deer Park at Benares. Legend again. There he enumerated the Four Noble Truths (Arya-satya): 1) All is suffering (duhkha, meaning the impermanence of existence and the unsatisfactory nature of that existence); 2) Craving—attachment—is the cause of suffering; 3) Craving can be blown out; 4) This is done by the Middle Way, the razor's edge, the noble Eightfold Path: right understanding, right speech, right action, right livelihood, right effort, right mindfulness, right concentration, right thought.

The noble Eightfold Path, the way (dharma) of the Buddha, was not enough for me.

The great and wise Buddha neglected the Ninth Way, for me the most important of all: right blood pressure. For me, and fifty million others in this country, there needs to be a Ninefold Path.

You who have some other chronic illness are welcome to a tenth, an eleventh, twelfth. . . .

Disease, my fellow suffers, is our special teacher and we sit at its feet. Chronic illness puts all practices to the test. Years of study, degrees and lineages, titles and blessings—which tend to fortify the ego-self—are like newspaper scraps blown about deserted city streets on a cold morning. We need to guard against Mara's endless tricks, the easy explanations. Such illusions distract us from the hard lessons of our diseases. Yet the sun shines and it is time to speak of dark things. The sun, said the ancient philosopher Diogenes, shines into the privies and is not defiled.

My ninefold path begins with those first weeks in the dialysis clinic. But the journey is circular. There are peaks, but also deep ravines, mist filled and dangerous. And then the traveler turns to survey the winding path behind . . . and, behold, sees only the sharp spires. Such is memory. So one must dig into those deep mysterious gorges.

It is thus a fragmented journey, a journey taken without steps. It is a path taken in the sky-blue dialysis chair where my blood flows through plastic tubes into a strange machine with beeps and buzzers and whirs and sirens . . . an incomprehensible machine that preserves my life.

Part I

Vlad the Impaled

1

Abandon All Hope

(DANTE, INFERNO, CANTO 3)

Monday morning, September 14, 1998, still feeling the summer heat, I arrive at the dialysis clinic before sunrise. For others it is a routine day, sipping their morning coffee, driving to work . . . and I, too, once drove to work in a factory. But this day I would trade for the most dismal job. Today I am to enter dialysis.

For six years I've dreaded this moment. More accurately, I've denied this moment, telling myself it would never happen. When visiting my father on dialysis, I would look away, not wishing to learn the mysteries of the machine, perhaps in the irrational fear that too much familiarity would consign me to his fate. He held out into his fifties before dialysis. I'm forty-eight.

The clinic is a single storied sprawl, mostly metal painted green and silver, with large almost wall-sized windows, blinds closed, and a vaulted archway at the entrance. Aseptic and severe, it overlooks a major highway. Countless times I've driven down this highway, consciously not looking at the clinic, as if not seeing would somehow spare me driving into its parking lot as a patient. Not looking would somehow halt the little deaths occurring in my kidneys. The most honest philosophers have said it: We really don't want to see, don't want to know.

I find a seat in the crowded waiting room. The majority of the patients my age are African-American males. For reasons not yet fully understood, twenty-five percent of the African-American population is hypertensive compared to fifteen percent of whites. Other patients are very old, an equal mix of male and female, black and white. Some are in wheelchairs. Many look sick: emaciated, stiff-legged, bruised, tired, and drained. But I don't belong here! I'm an athlete: How many of you have run the Boston Marathon? How stupid and egotistical to think such things, whispers mindfulness, even as I think them.

I glance at their forearms, searching for the oversized fistulas, where the artery has been surgically grafted onto a vein near the surface of the skin. This operation creates the access for the dialysis needles. There are two such needles, usually sixteen gauge (large bore), one arterial and the other venous, both inserted into the fistula. The needles are equipped with plastic butterfly wings to stabilize them on the skin. The blood flows from the arterial needle into the tubes and the machine, circulating back through the venous needle into the patient. The process has been explained to me many times. As if I could forget!

The waiting room is noisy for so early in the morning; lots of talk, laughter, stories from the weekend, then more laughter. Some of it sounds forced. But who can tell in this place?

I should have started dialysis in May. April to be honest. I held out until September, suffering, causing my family to suffer. Denial, everyone says. Yet, denial seems too simple a term, concealing more than it illuminates. Perhaps it'll take this entire memoir to adequately treat denial. These handy labels are like fast food, quick but without lasting sustenance.

I do vividly recall feeling that if I could run every day, no matter what the blood numbers said, I didn't need dialysis. Prepared to collapse, I ignored the signs as best I could. Even that evening before the first treatment I ran three miles, still wondering if I should go the next morning. I ran hoping to escape the inevitable, but my steps were heavy and slow and tired. Maximum depression overwhelms many patients just before starting dialysis; some commit suicide. No doubt I felt anxiety, maybe fear, but also the determination I used to feel before beginning a long race. Maybe it was stubbornness? Maybe I'm just an ornery bastard who refuses to believe anyone? Or, maybe the runner's high, the famous endorphin rush, keeps depression at bay?

At last the waiting room is emptied. One by one the nurses escort patients into the clinic. A computer printed sign is taped to the door leading into the clinic. It warns patients not to enter by themselves, but to wait for their nurse. The warning is signed by the manager, the master of this small world, whom I shall call Big Daddy (the name given to him by the nurses themselves). I will come to know this clinic manager well—this Big Daddy.

I'm alone now in the antechamber. Have they forgotten? All week I'd been on the phone: to my nephrologist, the head nurse, other functionaries, meticulously preparing for this day. I am to begin slowly; the first treatment will last two hours. The next day I'll go two and a half, the day after three. Three days in a row, then a day off, then Friday. My normal schedule will be Monday, Wednesday, and Friday. But this first week will determine how well I tolerate dialysis. Some patients never tolerate dialysis; it never works and they die. The causes remain largely unknown. The first physician to use dialysis, the inventor of the first artificial kidney, Dr. Willem Kolff from the Netherlands, lost fifteen patients in 1944 before one survived treatment. A sixty-eight-year-old housewife, Sophia Schafstadt, survived until her renal function returned. Kolff had to deal with the fact that her son was an alleged Nazi sympathizer, and the Nazis had invaded his native Holland.

I sit there grasping the first volume of Gibbon's The Decline and Fall of the Roman Empire. I've made a pledge to read the entire thing; Gibbon will be my dialysis book. Now