Entropic of Cancer


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E N T R O P I C   o f   C A N C E R

 

 

by William A. Henkin, Ph.D.

and

James Williams

 

Copyright © 2004, 2008, William A. Henkin

 

for Nicholas Harnack, in memoriam

 

 

The sun is setting. I feel this river flowing through me – its past, its ancient soil, the changing climate. The hills gently girdle it about: its course is fixed.

 

-- Henry Miller, Tropic of Cancer

 

Everything comes to pass; nothing comes to stay.


-- Buddhist observation

 

 

1.         T H E   M O T H E R   A N D    C H I L D   R E U N I O N

 

 

2.         R E M E M B R A N C E

 


 

 

 

 

T H E    M O T H E R   A N D   C H I L D   R E U N I O N

 

by James Williams

 

Copyright c 2004, 2007 by James Williams

 

for Cozy Nosetra, Stand-in’, and the entire gang at The Aerie

 

{This essay was originally solicited from James by the late Nicholas Harnack, aka Alexander Renault, for an anthology he was preparing. To James’s observation that he was bi, not gay, Nick replied that he’d be glad to make an exception for James, and James responded with “The Mother and Child Reunion,” originally published in Walking Higher: Gay Men Write About the Deaths of Their Mothers, edited by Nicholas Harnack. XLibris, 2004.}

 

 

Even since last year’s teachings, I can see that some of my friends have passed away. The same will happen to those who have gathered here this year – next year when we gather for the teachings it is definite that some of us will be no more – but none of us will even have thought, “It will be me.”

 

-- Tenzin Gyatso, His Holiness the Dalai Lama

 

 

 

1.

 

When my maternal grandfather was in his 60th year he suffered the first of many heart attacks, and I understood that he might die. Death was an uncertain concept for me when I was six, but I loved this man fervently, above all other males, and I prayed for him each night in the privacy of my little bed. I imagined my prayers like musical notes drifting upwards as on a warm breeze, ascending to a heaven where a god might hear them and spare my grandfather, or where, should he actually die and go there, he might receive them as some sort of balm.

 

Thirty years later, when she was 60, my mother did die, of metastatic uterine cancer of the liver. I was not in a prayerful period of my life, but I did employ psychic healers to will her well, and I encouraged her use of cancer-killing visualization tapes by the well-known psycho-oncologist Carl O. Simonton.

 

That my grandfather survived to be 91 and died only six months before my mother seemed to shed no light on the various mysteries of prayer or mental healing for me; and I was wholly unprepared to learn, in my own 60th year, that I had such an unusually aggressive form of prostate cancer that even after a negative CAT scan, a negative bone scan, and a highly successful surgery, I would continue to be seen as a “high risk” cancer patient for the rest of my life, however long or short its years might turn out to be – a number regarding which no single medical person would hazard a guess at all.

 

As I begin to write this essay I am only three weeks past that surgery. From mid-thigh to just below my navel, everything hurts inside and out, except the few square inches of skin here and there that only tingle numbly. I am relearning how to piss and shit in the ways, times, and places I prefer, and I have become intimate with all manner of “adult incontinence products.” The sexual apparatus that has given me such pleasure and philosophical insight over the decades does not even want to be touched, and due to the nature of my surgery and the location of the tumor it removed, those parts will probably never respond in the customary ways again. My gentle urologist quietly mentioned Viagra, but for someone who, a month ago, was multi-orgasmic and could come from penis, prostate, balls, asshole, nipples, breasts, ears, throat, and numerous other sites that give credence to Freud’s notion of polymorphous perversity, this suggestion of chemical intervention was not entirely welcome, especially as it came during a discussion of how my libido is likely to diminish during the three-year course of testosterone-suppressing hormones that must accompany the chemotherapy every doctor I know thinks I had better undergo and is almost certainly on my very immediate horizon.

 

This Viagra conversation took place about a week after I left the hospital, soon after my catheter had been removed, when I squealed just once but loudly enough to be heard throughout the office suite. Later my partner took me out to dinner, where I was so depressed I didn’t even look at the menu. Then we went home and in bed I remembered, as if it had been a hallucination, a scene from a morphine dream I’d had in the hospital. In this scene my mother sat by my bedside and took my hand. Did we speak? I want to think she sang Brahms’ lullaby, as she did when tucking me in at night for many of my childhood years. Since I’d been reading Proust of late I wonder if I somehow conflated my vision with Marcel’s longing for his mother’s delicious kiss in the opening pages of A la recherche du temps perdu. Then I wonder how Freud would regard the way I’ve lately joined my anticipatory loss of Eros with my anticipatory meeting with Thanatos. At last the drugs kick in and I am released to sleep, hoping not to piss my bed.

 

 

 

2.

 

Before I was born my mother was bivouacked on a farm in Missouri, while my father went through basic training for World War II as an army medical officer. There, she drank unpasteurized milk and contracted undulant fever, which kept her ill throughout her pregnancy with regular temperature spikes of 102o and 103o. By the time I was born my father was overseas, having been in D-Day +1, and my mother and I were living with her parents and sister in a Brooklyn apartment. I’m sure that in the ways mothers and children are biologically united – through heartbeat, breath, touch, sound, olfaction – I missed her presence. But between my doting grandparents and my eagerly maternal aunt, who took over much of my infant care including night-time feedings and diaperings, I had, in effect, four mothers.

 

From my earliest memories I recall my maternal grandfather as round: round head, round belly, round body, round laugh, big round heart. For a research attorney he was something of a dandy in his day. Since he was not just round but also short, he had all his suits made to order. While he was at it, he had his hair trimmed every week and his shoes shined every day; his nails were always buffed and polished, his face was always smooth and freshly shaved, and he smelled from morning till night of after-shave, bourbon, and good cigars. He liked to pretend to be tough around me, and he used to sing songs from what really was his pugnacious gangsta childhood in the Brooklyn tenements of the 1900s. One song – which turned out to be a variation on a real song that had been popular shortly before his birth – included the lines,

 

“ ‘A boy’s best friend is his mother.’

“ ‘You’re a liar.’

“ ‘You’re another.’ ”

 

But for me he always sang it with a smile.

 

Although they tended to careers in medicine, law, and the academe, the men on my father’s side of the family always seemed to be aspiring swashbucklers, whether in their professions or on the squash and tennis courts, in the swimming pool, at the card table, or in their never-ending arguments with each other and anyone else who’d join them. I expect the family came by its aggressions honestly or even genetically, since my paternal grandfather was a truly Abrahamic figure. Among 20 rebel students ridden down by the army and left for dead in his native land, he alone survived. He made his way to London, where he worked briefly in a hat factory, and then, at the age of 20 or 21, passed through Ellis Island to New York, where he became a doctor with a horse and buggy who set bones and delivered babies in exchange for whatever chicken or loaf of bread the patient’s family could offer. He brought his mother and seven siblings to the New World before marrying a pretty girl he didn’t know but whom he’d seen and found attractive while riding ambulance. I regarded them with awe when I was a child, in part because the men in my father’s family felt severe and frightening to me: utterly the opposite of my soft, sweet maternal grandfather, my real male mother, the first man I fell in love with.

 

I was in my 30s when my grandfather died on New Year’s eve. I flew from California to New York where the temperature was 10o at night and not much more the following day as we stood in the thankless January light and buried him in a cemetery plot I could never find again if I crawled for all my lifetimes across the cold necropolis of Queens. I could not stop crying at his funeral service even though I felt I was making a spectacle of myself in front of my grandmother, my mother, my aunt, my sister, my father, the other relatives, the friends, and the people I never even met that once; but I could not stop the tears streaming down my face, or the great wracking sobs that kept erupting from me. I don’t know what most of the other people there that day thought about my grandfather, but he was the first of my mothers to die.

 

 

 

3.

 

My grandparents were married more than 60 years. All the last times I saw them together they giggled and teased each other, held hands and cuddled and smooched. But several years before my grandfather died they had each been mugged separately by girl gangs in what was becoming their increasingly rough section of Brooklyn. My grandmother lost her purse, but my frail old grandfather, no longer even 5’ tall, had been found bloody and unconscious in the gutter without his wallet, and it had taken the police two days to identify this minor judge and Democratic party ward healer who had done enormous amounts of pro bono work for his immigrant community. Soon thereafter, and with great reluctance, my grandparents allowed my aunt to relocate them from what had been my first home to a smaller but safer apartment in a calmer section of the borough, closer to her.

 

What was it like for my 85-year-old grandmother to be alone in that alien apartment, alone with possessions that had belonged to him and to them as well as to her, alone without him, alone? She’d been a laugher and a happy complainer during my lifetime, and a flapper in her youth, when unconfirmed family rumors included an inter-racial affair with a Japanese lover. But in her 70s she’d had Bell’s palsy, and could no longer move the muscles on the right side of her face. She’d had to study how to chew and swallow. Little children, frightened of her partial rictus, screamed that she was a witch and ran from her. Gamely, she woke and dressed and shopped and ate and attended family functions as she lived out her days. I even have a photograph of her from these months, smiling and proffering a small glass of sherry as if in a toast to the photographer or the photographic viewer. But sometimes I saw tears trickle from her eyes when she forgot or ceased to care that someone might be watching, and despite her healthy vigor she began to feel to me like unusually vital dust.

 

I learned of my mother’s fatal prognosis in the same phone call I learned of my grandfather’s death. Apparently no one told my grandmother, but she was not stupid. Two days before I was to fly from California to the midwest to see my mother for what I did not yet know would really be the last time, my grandmother’s phone call awakened me. What is happening with my daughter? she wanted to know; no one will tell me. Frightened, callow, stupid as she was not, I said I did not know but was going to find out and would call to tell her when I came home. In other words, I lied to my grandmother about her daughter’s, my mother’s, illness. It was our last conversation. Two days later, while I sat sleeplessly dazed in my mother’s hospital room listening to her breathe in the coma she never woke up from, the bedside telephone rang. It was my uncle, calling to say my grandmother had died in her sleep with no observable cause of death other than grief.

 

 

 

4.

 

The second of my mothers to die preceded my biological mother in death by only a few hours. No one was with her. My mother died while we were all – father, sister, aunt, self – home eating supper at my father’s insistence. After the phone call I went back to say good-bye to an open-mouthed corpse in a sterile hospital room, cautioned first by a kindly nurse who wanted to make sure I knew what I was doing. Then I began a staggering couple of days’ journey through bottles of bourbon, lines of cocaine, and handfuls of joints, crying again as if I would never come to the end of the tears I had started to weep on New Year’s Day, six months earlier. My father came to my room worried about my chemical consumption. I sobered up like a lightbulb switching on and told him, You have to grieve in your way, I have to grieve in mine.

 

In 28 weeks I had lost three of my four mothers, three of the five people closest to my heart. My biological mother had, of course, been even more special to me than her parents had been, and by the time I came back from my grandmother’s funeral to attend my mother’s, I was a total wreck.

 

In some regards the song my grandfather sang had become true for me: for my entire childhood my best friend really was my mother, at least partly because she was the only constant in my early life. By the time I started kindergarten I’d had four homes; by the time I finished first grade I’d had three more, in two more states. I didn’t see my father till I was nearly two years old, when he came home from the war, and as he moved around searching for a place to ply his trade, my other relatives were left behind; friends I made at each new homestead vanished with every move; and though my sister later became one of the great friends of my life, born in the midst of all these moves she was at first just the entity that displaced me from what little center I still held.

 

But my mother was always present. She was alert to my needs, protective of my desires, gentle, kind, instructive, always home when I came home, trustworthy and therefore trusted. In my early world of turmoil she first gave me life and afterwards saved my life against the scourges of growing up. I brought her skinned knees and prizes trouvé, hopes and fears, triumphs and disasters, girlfriends and boyfriends, snakes and turtles and Mother’s Day cologne no one but a Renaissance courtier could possibly have worn. I came home to her from youthful adventures, indiscretions, and peccadilloes, and even came home to her by asserting I would not. I sent her maudlin poetic letters from college and was rewarded with cartoons from the Sunday paper and limericks and drawings from her own comic hand. All, indeed, seemed set for a lifetime of maternal/filial love and devotion until the afternoon I met the army.

 

 

 

5.

 

In the 1960s, when I came of age, the United States still had a military draft, for which all males were to register when they turned 18. I had duly registered, and a few years later was told to report for my pre-induction physical exam.

 

Even if there had been no Viet Nam War the idea of me in the military was a very, very, very bad joke. At 22 I was a poet, a singer, an actor, and a fey wuss of the first water, anxious and depressed in ways that sent me stumbling into whiskey-sodden sleep more nights than not. Even my psychiatrist agreed the military would not be a good place for a young man of my character and disposition. First cautioning me that the record would follow me all the days of my life, he agreed to write a letter to my draft board outlining the reasons they should pass me by. He gave me the sealed letter to hand-carry to my physical, extracting from me first a promise that I would not read its contents. I agreed and I kept my agreement, but the army psychiatrist was quite clear in what he said.

 

A few days ahead of schedule I traveled from my home in a neighboring state to the city where my parents lived and where I had originally registered. The night before the exam, after becoming too drunk to find the car, I passed out on my bed and awakened at two in the morning from a nightmare in which I was driving an army jeep through a long, dark tunnel while a skeleton in an officer’s uniform rode shotgun. I did not go back to sleep.

 

In the couple of years before my physical, men’s underwear had undergone a minor revolution in the U.S., for those who cared. In addition to Jockey-style shorts and baggy boxers, bikini briefs were now to be had in a few conventional stores, and I had some. I thought I had deliberately packed some Jockeys for my physical, but – Freudian slip? – when I looked for them on the momentous morning there was nothing in my suitcase but the very brief briefs, in a choice of black or red.

 

At an army physical underpants are the entire uniform worn by prospective inductees, and with my physical at six a.m. I had no time to remedy my plight. I showed up at the Fort still drunk, also now hung over, terrified by my dream, and dressed under my jeans in black bikini briefs that my fellow draftees and the prevailing army corps would only understand to be the drag of a hopeless faggot. Soon I found one other guy in my group who was also wearing bikinis. His had a leopard print, and he was built something like the Terminator. I gravitated toward him for safety and no one hassled either of us.

 

After I had listened to sounds, looked at eye charts, breathed, bent, and spread in all the ignominious ways the physical was meant to demonstrate that I was competent to wear the uniform, I came to my psychiatric evaluation. This was where my letter came in, and the captain who read it dismissed me as if I were fresh bird shit that had landed on his brand-new do. “You’re rejected!” he barked as if it were an order; then he added in a tone of strictly professional courtesy, “You are welcome to stay for lunch.”

 

The reason I was anathema to the army turned out to be my “psychosexual confusion.” My 1960s psychiatrist apparently thought I was confused because I liked sex with men as well as with women, which meant, in the sorts of Freudian terms then current, that I was also a case of arrested emotional development: I loved my mother too much. In terms that were not yet current I was most certainly bi, and in the army that meant gay, and gay meant I could no more serve my country at arms than I can, today, donate blood in even the direst emergency because I have slept with men since the discovery of HIV – a stricture that does not, curiously, apply to women who have slept with men in that same period.

 

The army was anyway having none of me. I told my mother that afternoon with great relief, while I sat at her kitchen table drinking coffee and she faced away from me, slaving over her hot stove. When she heard “psychosexual confusion” her shoulders slumped as if she’d been gut-punched, and I knew that, like the army, she’d heard “homosexual.” In Freudian America three years before Stonewall, that meant she had done something terribly, terribly wrong in raising me, and consequently had failed in her life’s endeavor, being a good mother.

 

 

 

6.

 

I date our real separation from that June day in 1966. Ever afterward I felt my mother withdraw from me as if she were trying somehow to undo the harm she thought she’d wrought by being the one human being I could count on for love and comfort, respect, support, and intimacy, every single day of my childhood.

 

Did her love make me bi? What a crock! Even leaving Kinsey and subsequent sex researchers apart, I’m a sexual human being: a highly sexual example of a highly sexual species in a world that is only made possible by the frequent and enthusiastic practice of sex. “Go forth and multiply” was not an instruction to do arithmetic.

 

What my mother did give me was love, and a chance to develop self-esteem so healthy it would carry me through the disasters any life encounters. That a small-brained, short-sighted, narrow-minded thread of discriminatory religious ideology rampant in our society could persuade one intelligent, caring woman that loving her child had been wrong means that tens or hundreds of thousands of other mothers and sons were being similarly afflicted by a cultural perversity so pervasive it took a nation-wide street fight to even call it into question.

 

Like some Irish actor of her own generation, I think back on my mother as a saint, and on our maternal/filial love as holy. I don’t mean she was a woman without ample faults or that any church should beatify her, I don’t mean we should pose for any Pietà, and I don’t even mean that we were special. I mean that, instances of human confusion and abuse apart, mother-love itself is fundamentally holy for us as it is throughout the animal world, and the mother who confers it confers a gift without equal, whose absence can never be replaced. What my mother gave me made love possible in the rest of my life: sexual love for women and for men, emotional love for humans of every color and persuasion, agape for the plants and animals that share my biosphere, spiritual love for the planet and the infinite jest of stars in the night-time desert sky. When my mother died we had been unnecessarily estranged to some extent for 15 years because of a blind, unthinking prejudice, and we just barely came back together in the last months of her life, in her last conscious moments. Without pretending we did not have intra- and inter-personal problems of our own, as I see it the fault for our estrangement lay neither with her nor with me but with our time and place. As the psychiatrist Robert Linder wrote in his 1952 book Prescription for Rebellion, adapting to a maladjusted society is not just stupid, it’s dangerous for both the individual and society. Where my sexuality was concerned I did not adapt. I lived in a time and place where who I was could not be celebrated, honored, or even acknowledged, so I was confused; but my confusion derived from trying to fit into my dangerously rigid society, not from my psychosexual development.

 

 

7.

 

A month and a few days after surgery my penis can be touched – gently, gingerly – and my partner touches me. Agony! Ecstasy! Though admittedly, both on a very small scale. I am so grateful I would weep, except I’ve been weeping so much the past couple of months in fear, anxiety, apprehension, loss, sorrow, grief, and finally flat-out pain and frustration that I don’t really want to cry about this, so I let go of my body and it shudders a little bit, the way it used to do in various experiences of orgasm. Good! I like this! Later I’m in so much pain I have to take medication and lie down. I’m exhausted from pain, but after awhile the meds take over and I nap. When I wake I practice masturbating. Nothing gets hard, but sensation is present. I add a bit of fantasy, and after awhile a tiny little series of dry twitches remind me dimly of an echo of a memory of a long-forgotten dream that in another life I called orgasm. Good again! Hope springs temporary, if not eternal. Then everything that used to hurt aches big time, as if someone jacked up the volume and the bass, abruptly and both at once. Owww! But I have notched a victory. How can I have a sex life again? How do you get to Carnegie Hall?

 

Unknown to me, and while she was at the bedside of my mother, her sister, that teenaged girl who had changed my diapers and given me so many midnight feedings during my first few months alive, was confronting a cancer of her own. After a series of lumpectomies my aunt succumbed to a bilateral mastectomy rather than risk a likelihood of dying young, but it was a tough and bitter choice for a woman so attractive that young men whistled at her in the streets long afterwards and all through her 70s, and whose husband was, in heterosexual parlance, a breast man.

 

Now, however spry and active she is in the joyous way she insists on living, my wondrously cherished fourth mother has become an old lady at last. When I gaze on her I feel like Marcel again, but this time in the last rather than the first volume of Proust’s vast exegesis of a social order that was also dying, when he attends a party and mistakes everyone there for being in costume because they all appear to be so decrepit. Slowly, only slowly, it dawns on him that these are no young folks in party costumes, but people grown genuinely old; and that if the friends of his childhood and youth have come truly to these white hairs and bald heads, these wide girths, rheumy eyes, and canes, then so, it must be, has he. It is then that he conceives the novel at whose conclusion the reader has just arrived, and the whole architecture of Proust’s magnificent accomplishment comes clear. As the author must have known, who was considered a foppish dilettante for most of his adulthood and who died before his work was half published, it is also only at the end of a life that we can possibly begin to grasp its meaning, however difficult it may be to hold that knowledge when the end is nigh.

 

Cancer doesn’t hurt, at first. On the day I received my initial inkling that I might be in trouble I felt great: I was enjoying my work and enjoying my play, my partner was proving to be better than I had ever expected, my first book had recently been published to terrific reviews, and I was generally feeling pretty much at the top of my game. The same was true the day I received my formal diagnosis: except for life-saving inside knowledge gleaned by a medical science that would have been deaf, dumb, crippled, and blind to this stage of my disease a century ago, I had no reason to feel bad and every reason to feel I was blessed beyond measure. Then I got the word. What would it mean?

 

Some gay and bisexual men who survived the Plague Years of the 1980s and ’90s without contracting HIV forget, in a way, that other ways to die still lie ahead, and that sooner or later we must all come to the final paragraph, the last frame, the resonant harmonic fading away. The rediscovery that life means death can come as a rude surprise.

 

When my mother died in that terrible year my aunt lost both her parents and her belovèd sister she suddenly cried, “I’m an orphan!” And rarely have I heard so shockingly anguished a realization. It does no good to say that we are all orphans, so much of being alive consists in ignoring our status directly or indirectly, or trying to come to terms with it. Of course we are; and of course as we are born into a world of orphans, so we leave orphans behind us. And yet, and yet, as Crazy Kat and Ignaz Mouse would say: and yet, and yet.

 

I do not know if I’ll ever get hard again, but I can lick and I can suck, and I can rock ’n’ roll. I don’t know how I’ll feel getting butt-fucked the next time I do, but I hereby promise to find out.

 

Yes, dear aunt, dear last of my many mothers, you’re an orphan. And so am I. But that does not make us less, or make our love grow smaller. As my closest friend has been telling me for years, “A next breath is guaranteed to no one.” So, as ever, I am only one breath, one motion, away from the mother and child reunion.

 

 

 

Gyatso, Tenzin, His Holiness the Dalai Lama, Path to Bliss: A Practical Guide to Stages of Meditation, translated by Geshe Thupten Jinpa, edited by Christine Cox. Ithaca, NY: Snow Lion Publications, 1991

 


 

 

 

 

 

R E M E M B R A N C E

 

by William A. Henkin, Ph.D.

 

Copyright © 2006, 2008 by William A. Henkin

 

 

for Dean Engel, in memoriam

 

 

But the fact is, death is not a confrontation. It is simply an event in the sequence of nature’s ongoing rhythms. Not death but disease is the real enemy, disease the malign force that requires confrontation. Death is the surcease that comes when the exhausting battle has been lost. Even the confrontation with disease should be approached with the realization that many of the sicknesses of our species are simply conveyances for the inexorable journey by which each of us is returned to the same state of physical, and perhaps spiritual, nonexistence from which we emerged at conception. Every triumph over some major pathology, no matter how ringing the victory, is only a reprieve from the inevitable end.

 

        -- Sherwin Nuland, M.D., How We Die: “The Strangled Heart”

 

 

Cherie Nutting: Describe yourself in 3 words.

Paul Bowles: I am here.

 

-- Cherie Nutting with Paul Bowles, Yesterday’s Perfume: An Intimate Memoir of Paul Bowles

 

 

For behold, I have been with you from the beginning, and I am that which is attained at the end of desire.

 

-- Starhawk, The Charge of the Goddess (traditional, adapted), The Spiral Dance

 

 

 

 

 

 

                                                                                                3 March 04

 

 

L. C., MD

San Francisco CA

 

Oooohhh, Dr. L,

 

just a catch-up here. 4 weeks after surgery (tomorrow) and 3 weeks after catheter removal (Friday) I am having relatively little incontinence. I still wear diapers when I am in my office with clients, since maximum protection is a safeguard against both occasional blood leak and stool softener moments, as well as against my strategic inability to leap up and say SkewYuse me, I'll be back in somewhere between 5 and 40 minutes. Otherwise, the diapers are chiefly merely prudent. I sometimes but not always have stress incontinence when I stand up or sit down, or if I am in some other physical distress, but I don’t leak at night and generally speaking incontinence is not being a major problem: I.S. [surgeon] expects complete or nearly complete control within 3 months.

 

I had some extremely painful moments with my leg, and after I described the symptoms to I.S., he described them to a neurologist who said it is not common but far from unheard of for someone who spent as many hours as I did in the position I was in for surgery. He believes it is the lateral femoral cutaneous nerve, and the pain should subside – as indeed it has, to a great extent: down from a 9 or so a week ago to about a 3 or 4 on a 10-pt scale, and I only took two vicodin yesterday instead of four. No more night-time valium, though I used a good deal of it as a muscle relaxant and soporific during the first couple weeks of recuperation, and while I am not using it any longer my PRN supply is quite low: are you willing to phone in an Rx? Meanwhile, a double cognac helps.


As you know, before surgery I.S. sent me to speak with A.B., who is a medical oncologist with as long-standing a specialty in prostate cancer as a 41-year-old physician can have, and who encouraged me to apply for the experimental chemo protocol both he and I.S. seem to think concerns the most efficacious drug available (mitozantrone), but which is not yet approved for standard treatment – A. B. believes it will be, after this trial, but concedes I have a 1:2 chance of being selected, and if I am not there is no chemo in the trial, as I understand it: just pain meds and the hormone therapy that is part of any prostate cancer chemo package. I can, of course, drop out of the program if I am not selected or for any other reason.... Anyway, I have till about 1 June to apply for that protocol, though if I decide to do so I will apply in April before L. and I go away for a week’s R & R, or in very early May, right after we return. Before I decide, however, and as we discussed, I have an appointment with A. N. for a second medical oncologist opinion on Fri 3/12, to get a wider sense of my options and what the problems might be with them. Then, after I get my first post-surgical PSA results about a week later, I will meet with I.S. to select a strategy and approach.

I’ve asked everyone all along the line to get copies of everything to you, but I understand there are glitches in the system from time to time. If I can do anything to move stuff along, please let me know.

 

                                                                                                Best,


* * *

 

It’s easy to write about sex and religion, all too easy to write about politics; it is harder to write about death because few people have first-hand experience with it, so for the most part we must speculate about what we cannot truly know.

 

Nonetheless, we all will die. Some of us have approached death’s door already, albeit without passing through; and a very few others report going through and coming back.

 

I do not know about coming back. I am one who has approached death’s door and only seen it from the outside, closed. But I want to tell you what I saw so that I can remember, because even now, a year and two and coming up on three years away from those events, already I don’t remember much: the human brain is wired to suppress intolerable pains, medicines are designed to blunt or dampen them, and the mind doesn’t want to remember

its own personal horrors, seeks instead to rejoin whatever “normal” life may be – or so it has been for me.

 

This is a journal of my healing. I hope.

 

* * *

 

Something more than two years ago I learned I had a highly malignant form of a disease that is ordinarily as benign as a life-threatening illness can be. About one in six men are diagnosed with prostate cancer in the course of our lives, though an oft-cited medical consensus holds that if every man lived to be 100, then every man would have it. But this usually slow-growing and late-arriving cancer had arrived early for me, and had grown very fast. I moved from no evident symptoms to an all-out assault with a high PSA*, a very high Gleason score**, and a palpable tumor in less than one year, and learned about it five months to the day after my 59th birthday.

 

 

 

 

* Prostate-specific antigen (PSA) is a protein produced by the cells of the prostate gland. The PSA test measures the level of PSA in the blood. The amount of PSA is measured from a blood sample in a medical laboratory. Because PSA is produced by the body and can be used to detect disease, it is sometimes called a biological marker or a tumor marker. See more at p. x, below, and at the website from which I derived the definition above, http://www.cancer.gov/cancertopics/factsheet/Detection/PSA.

 

 

 

** Named after Donald Gleason, M.D., who developed it, the Gleason score is a system of rating a prostate cancer’s severity by assigning a grade to each of the two largest areas of cancer in the tissue samples taken through biopsy. Grades range from 1 to 5, with 1 being the least aggressive and 5 the most aggressive. Grade 3 tumors, for example, seldom have metastases, but metastases are common with grade 4 or grade 5. The two grades are then added together to produce a Gleason score. A score of 2 to 4 is considered low grade; 5 through 7, intermediate grade; and 8 through 10, high grade. A tumor with a low Gleason score typically grows slowly enough that it may not pose a significant threat to the patient in his lifetime.

http://www.phoenix5.org/glossary/Gleason_Score.html

 

 

 

Six weeks after diagnosis, after batteries of biopsies, x-rays, blood tests, bone scans, and donations of autologous blood, I underwent a radical prostatectomy; four months later I began a course of chemotherapy that lasted five months; two months after chemo I had eight weeks of radiation therapy. Concurrently with chemo I started an androgen-blocking hormone therapy the doctors say will last a total of three years, because prostate cancer, like breast cancer, is often hormone-driven, and the androgen blocker can sometimes starve the cancer. Sometimes.

 

* * *

 

I wrote about my surgery in “The Mother and Child Reunion” and will add only a little about it a few pages below. The part of my journey with which I am concerned in this essay took place after I was up and about again, nearly healed and then as healed as I could be from part one.

 

Surprisingly, radiation affected my day-to-day life very little, though in conjunction with the hormone therapy it probably helped provoke the osteopenia – a precursor to osteoporosis – that later showed up in my lower back. Chemotherapy, on the other hand, is a form of treatment still in the early stages of its development, and so it is a fairly blunt instrument for its purposes. Intended to kill off fast-replicating cells like cancer’s, chemo does not discriminate: it took my hair down to and then including my eyebrows and lashes, and wiped out my immune system’s defenses, making me extraordinarily susceptible to infections. It peeled the outside of my nails from the inside and scored the pulp with ridges, evenly spaced to mark my infusions, and permanently dried the skin of my hands. It took my stamina and energy, and deprived me of my life-force, which returned gradually but always in measure, so that more than 1-½ years after chemo ended I still feel significantly diminished.

 

Every three weeks I went to the drugstore and bought a three-day supply of pills on Monday, which I began to ingest by mouth on Tuesday morning. By Tuesday afternoon I had become extremely speedy, and had to will myself not to interrupt every conversation I was in. At night I could not go to sleep without some combination of downers, each of which had its problem: Ativan seemed to suppress some cerebral functions and compromise others, including my memory and my abilities to feel my emotions clearly and to think rationally, and made me feel surly and out of sorts the following day; Valium left me too groggy for work in the morning; alcohol only made me feel worse; and medical marijuana, which smoothed out my rough edges enough to let me sleep at night, was federally illegal so I could not take it with me when I traveled out of California. It never occurred to me to ask for regular sleepers: I was too overcome.

 

On Wednesday I took more pills, then sat in a lounge chair for an hour or two while a bag of far stronger chemo dripped slowly into my vein. On Thursday I finished the round of oral meds and by Friday, instead of feeling speedy, I began to feel seriously ill: I could not comfortably sit down, stand up, lie down, read, listen to music, or watch television. No food tasted good: even lettuce was bad; even water was bad: I drank seltzer or club soda and ate without pleasure. By Saturday night I was too sick to move or eat. From then through Sunday I slept as much as possible because that was all my body could do, and in any case being awake was awful: truly I felt close to death. By Sunday evening I had stopped feeling worse, which is not at all the same thing as feeling better, and I could eat some mango or Thai soups my partner brought home. On Monday I diligently went to work, sleeping before and in between clients till it was time to go home and sleep some more. After ten or twelve days I could finally fall asleep without the aid of downers, but eight or ten days later the cycle began all over again. Though I did a lot of mirror work during my chemo and healing, meditating on my own face, I have no real idea what I looked like any longer. On my good days, my partner says, I moved like a ghost.

 

When chemo ended my formerly wavy blond hair returned crinkly and nearly black. After six months it began to resemble a thinner, greyer version of what it once had been. By that time I was starting to forget some of the most important experiences of my life. I knew by then that I wanted to live, and that attachment to life itself now keeps me at some distance from the insights I had when I waited outside Death’s closed door.

 

* * *

 

Before I began radiation, while I was still on chemo, my oldest friend and spiritual brother for nearly 50 years, D, was diagnosed with pancreatic cancer; he died of it less than a month after I completed the major portions of my treatment. In his last month he phoned to tell me he had to “leave,” and I visited with him just the week before, but I learned of his death from his wife E, by phone, at the Atlanta airport in between flights on a visit to my father I had postponed because of my surgery. When I returned home I started carrying T.S. Eliot’s Four Quartets everywhere I went. It had long been a favorite poem of mine and a great favorite of D’s, and reading it over and over again allowed me to feel closer to him, as did affixing a picture of him to a loving card he had sent me when we were both more innocent, and that I kept prominently on my desk at home.

 

One year after D’s death E held a very small ceremony to bury his ashes. She invited his son J and J’s wife, two of his closest associates K and M and their wives, and me. The day was grey and rainy – one of the 25 days of rain we had that March in the San Francisco area – and mists and drizzle drifted over green trees and fields as we approached her chosen spot on foot, a mile or so from where we’d parked. A single great blue heron had nested nearby and flew sorties around us, either keeping its distance or seeking to persuade us that it and not its nest would make the better prey. We stood beneath umbrellas, beneath a pair of lichen-covered black oak trees as J dug, with a small camp shovel K had brought, a very narrow, very shallow grave. E knelt and placed on the ground a box with the encircled Japanese ideogram 本屋 inside its lid,* and started to cry.

 

 

* “The Japanese character is an easy one for students of the language to recognize./ The two parallel lines are horizontal, the long one on top, the short one bottom: It is the ‘hon’ in Nihon, the Japanese name for ‘Japan.’/ By itself, it means, ‘source’ or ‘origin’: the ‘Ni’ of Nihon  (日)means ‘sun’ thus, from the Chinese point of view, ‘the source of the sun’ i.e. Japan lay off shore over there where the sun rises..../ It also means ‘book,’ both in Japanese and Chinese. ‘Honya’ 本屋  literally ‘book-store,’/ as well as a number of other usages./ Placed in a circle like this, [it] evokes the image of a book store...a simple banner or wooden plaque with this symbol often is on the front of a book store to advertise itself./ It seems to be on the underside of a top to a box, lacquered in red, which may have been for a particularly prize[d] volume.”

--D. W. to E. E., 5/12/06

 

She placed one hand on the box, and when she stood up others of us did the same. She opened the box, removed the thick plastic bag it contained, and let the ashes fall.

 

When the bag was empty she and J ran their fingers through what was left of D’s mortal remains, and replaced the displaced earth. She brought out D’s battered and annotated old copy of Eliot and started to read but could not. She asked me to read the last two pages, from “Little Gidding”:

 

 

What we call the beginning is often the end

And to make an end is to make a beginning….

 

     We shall not cease from exploration

And the end of all our exploring

Will be to arrive where we started

And know the place for the first time….

 

And all shall be well

And all manner of thing shall be well

When the tongues of flame are in-folded

Into the crowned knot of fire

And the fire and the rose are one.

 

 

It was exactly the passage I had planned to read from my own copy, still dry in my coat pocket, had she read something else and invited me to read.

 

A few people said a few words, and M asked if E would like some time alone. The rest of us, except for J, walked down to where the heron became active once again, while wife and son knelt at the grave and communed or commiserated. When they came down from the small hill E took my arm and we all began walking toward the cars. “J told me I had to let go,” she said.

 

“That’s so,” I replied, “but that doesn’t mean doing without. I know how profoundly connected D was to many people and places across the globe, and how a man such as he was must have business – I do not mean busy-ness, or the business that Herbert Hoover said was America’s business, but business in a spiritual way, as in karma, or that web of connections people weave with others they ‘recognize’ in some ineffable way, or the extended ‘families’ people have with others to whom they feel connected, the ‘clan’ or ‘tribe’ the Homeric Greeks called ‘philloi’ – how a man such as he was must have had business with many, and so belongs to many, and holds many, too. It’s like loving with an open hand” – I opened my palm – “so that which belongs with you can stay, and that which doesn’t is free to go.


“You have a special claim where D’s spiritual business is concerned, as does J; and, I’d guess, in a different way so do all of us who were here today. But D used to come and talk with me, sometimes, when things were not all well at home, as he also did when they were fine; and I know from those conversations, and from much else he said and showed, what a remarkably special place you held in his heart; and I know that as he knew you loved him, so he knew – and I trust you did and do as well – that he loved you.

 

“That love you shared, and all the times of your shared years – when you open your hand that holds all you had with D, that, I think, is what you will find remains with you forever.”

 

“I miss him so,” she said.


* * *

 

A radical prostatectomy is major invasive surgery, generally performed when the cancer is – or would be without the surgery – life-threatening. The surgeon can cut the body open either at the lower abdomen or at the perineum, which was the route my surgeon preferred, but either way he must reach and excise the prostate gland, a walnut-sized fist of tissue surrounding the urethra, close enough to the pubococcygeous muscle to be palpable by a finger inserted into the rectum. This so-called Digital Rectal Exam, or DRE, is usually the first way a physician ascertains that all is well – or not – with a man’s prostate. If not, further questions follow, or a blood test that monitors the Prostate Specific Antigen (PSA) is called on to challenge or support the findings of the DRE. Enough evidence leads to a tissue biopsy from multiple sections – eight, in my case – of the prostate. When biopsy confirms cancer, the man’s options are surgery, chemotherapy, radiation therapy, irradiated seeds implanted into the prostate, or doing nothing – “watchful waiting.”

 

Watchful waiting is the usual course for men at the likely end of their lifespans. Prostate cancer ordinarily is slow-growing, as I said, and the man who grows one in his late 70s or 80s or 90s stands an excellent chance of dying some other way before the cancer has to be addressed. In this case, frequent PSA tests are usually enough to let the oncologist know that all is proceeding at a sufficiently stately pace so that nothing more need be done. In the present state of medical science irradiated seeds implanted in the cancerous prostate may be useful for young cancers that are not especially malign, but are otherwise of limited utility. Radiation therapy is the frequent course of choice for most cancers caught early enough: though the treatment scars the urethra and bladder and also the bowels sometimes, and precludes surgery later on, it is otherwise non-invasive and has a good rate of success for low- and medium-grade cancers. Chemotherapy is more aggressive, and is rarely used alone: more often it is combined with radiation and used as another adjuvant therapy. Surgery, as I said, is the treatment of choice for serious, advanced cancers – if they are found in time, before the cancer has spread to the lymph nodes or elsewhere.

 

The urethra is affected by prostate surgery, of course, so urinary incontinence is a frequent sequel; bowels can be affected; and sexual functioning is always affected adversely. Surgery saved my life, for the time being, but it also made erections and ejaculations impossible; then hormone therapy made them useless and, for a time, even irrelevant. As it does for convicted pedophiles under legal rather than medical aegis, an androgen blocker administered every three months by deep muscular injection turned off a switch in my brain so that I couldn’t care about sex. Along with sex I lost interest in my own creative processes. Like so many people who think they should want to be thin or big or strong or sexy or something else they are not but might once have been, I wanted to want to write again, as I had been doing most days since I was 10 or 11 years of age, but I didn’t want to write in that I had neither passion nor drive to do so, and consistently drew only a blank when I tried. Sex and creativity rather famously go together, and as a writer of erotica, among other forms, the whammy went double for me. I never even thought about sex, and my erotic writing career came to an unceremonious end. If not for my earnestly persistent partner, whose interest in sex never flagged, I doubt I’d have ever thought about it again.

 

Without a fantasy life I noted beautiful people on the streets rather as I noted trees or architecture. Without testosterone my skin became soft and smooth; my muscles grew smaller and softer; painfully, I grew B-cup breasts; I became emotionally labile, alternately laughing, crying, and bristling with irritation, like a stereotypical perimenopausal woman; after decades of always being too warm, sleeping naked with open windows and buttoning my overcoat chiefly against rain rather than fallen temperatures, now I was always cold and ran the heater in my office nearly every day.

 

Most insidious of all, however, a spiritless, sad listlessness settled over me and, for more than a year, became my emotional baseline. At first I did not know if this mood would ever end; I did not know if it was a result of the chemo, the androgen blocker, the whole grim experience I’d undergone, or if it was just a piece of normal ageing.

 

In time I came to believe it was all of the above and then some: the cancer diagnosis and treatment had begun a psychological process, and that process, including my barrage of treatments and my lack of testosterone, radically changed the way I felt engaged with my life. Previously, I’d felt I had boundless energy and very deep reserves, and I was greatly invested in doing things: I ran over my formal private practice hours nearly every day I was in my office, starting an hour early and ending an hour late and using the few minutes between clients not only to chart my notes, but also to return phone calls and polish paragraphs in whatever essay, story, lecture, or chapter I was writing. I published articles under one name and erotic fiction under another, taught at universities, lectured and led workshops for professional as well as community organizations, edited other people’s writings, maintained close friendships in the midst of a wide social network, and thought of myself as something of a go-to guy: if something had to be done, I would do it or find a way to get it done.

 

As I recovered from treatment I found myself more interested in being: I wanted more time for introspection, more time to contemplate, more time to hear waves break on the shore, more time to see the moon pass through its phases, more time to smell the lavender and rosemary that grew in front of my house, more time with my partner and with my best friends; I didn’t much want to do anything.

 

* * *

 

I remember feeling terrific the morning of my surgery, just as if I were ... well ... normal. I joked with the nurses, chatted with the amiable anaesthesiologist about nutritional supplements – she urgently wanted them regulated – took a genuine interest in the operating theatre, and said good morning to my urologist-surgeon. When a technician invited me to make myself as comfortable as possible on the operating table, I said in all seriousness that my comfort was not germane: I wanted him to be comfortable; I wanted the whole team to be comfortable; I wanted to make it as easy as possible for them to help me live.

 

I never felt the needle or the mask, never felt the table, never felt another thing, in fact – or maybe I just don’t remember feeling anything – until I vaguely recognized my body was distressed and “I” seemed to be a long way off. I could hear a pair of nurses at some distance arguing about how to place my legs on the gurney leaving surgery. “Flat,” I croaked. I had died and been reborn. No time seemed to pass and my gurney wheeled into a room with two beds. “Window,” I said. Some period of blank time later I rose up heavily through a large quantity of morphine, feeling worse than I had ever felt in my conscious life and worse than I have ever felt since, except, perhaps, for a dozen of the chemo days. I took a fleeting but sincere comfort from seeing my partner seated in a chair along the wall, and then I died again.

 

* * *

 

The memories I especially do not want to lose are of events that took place while I was recovering from surgery, of others from when I was rising up from the chemo depths, and of a few that have occurred in the scant years since but could not, I feel, have reached me had I not already been through these other experiences. They are the moments I knew that I would die and the moments I knew I would not, and the moments I knew my dying could not matter; they are among the most terrible, precious, and sacred I have ever known.

 

I remember, first, knowing that I would die: not as a cognitive exercise like, “of course, I’ll die someday, everybody dies,” but as a full realization in my heart and mind and the cells of my body that this breath or this could really be my last. The awareness helped me focus: it grounded me and centered me and gave me a grace and peace that lasted for several days as I lay damaged and drug-sick in bed, watching the clouds shift daylight and nightlight and glitter as they played against my window. In time, this recognition formed the basis for my realization that, in a sense, I was already dead: that my days have always been so numbered that they are past already; that my existence itself is an illusion of my mind, which is an illusion; that Lao Tzu’s gloss on his dream – “I dreamed I was a butterfly, and when I awoke I did not know if I was Lao Tzu who had dreamed he was a butterfly, or a butterfly now dreaming I was Lao Tzu” – was not at all mere philosophizing; that the !Kung of the Kalahari have it right in saying “There is a dream dreaming us.”

 

I remember nothing of my life outside each moment, as nothing itself filled my entire existence. I remember becoming newly aware that stars and galaxies and universes die, as well as trees and flowers and dogs and cats and people. I remember swimming in the river of all and everything that flows over the eternal falls. And I remember the door that might have opened but – this time – did not.

 

I was reminded of that experience a year later when, surgery, chemo, and radiation behind me, I visited D as he lay dying. In the midst of worrying how to distribute his wealth of books and music he looked at me and paused, cocked his head, and said in a quizzical tone of voice, “I don’t have to worry about all this – I won’t be here.”

 

* * *

 

I had meditated for years before surgery and I meditated throughout my recovery, starting as soon as I was aware enough to press the morphine drip in my hospital bed. Usually I sought to be mindful by attending to my breath. When I could do nothing else I still could breathe, and the breath entering and leaving my body was a place for me to focus my mind, as well as a reminder that I remained alive, a tool to ground and center myself, and a literal way of inspiration. It opened me up to everything I went through.

 

* * *

 

Days, weeks, months have passed. I have moved on from treatment; I am living my “normal” life again. One day I wake to realize I have lost my bearings, lost my compass: I’m all at sea. Who am I now? What shall I do until I die? How shall I serve the purpose of my life? What purpose? What life? What I?

 

I remember lying in bed close to midnight and becoming aware of a condition of consciousness that was not “me,” but was using me, as it were: looking through my eyes, hearing through my ears, missing none of all “I” saw – or missed. I became aware of awareness, so to speak, and that awareness was neither me nor mine. It was utterly neutral, engaged just in experience. I started to giggle, witnessing an experience through myself that “I” didn’t have at all, since the experiencer was not me in any conventional sense. That was the “I” that witnessed the witness watching, like a strip from the 1950s Sunday comics: This is a watchbird. This is a watchbird watching you. Those who speak don’t know, a Zen axiom goes, and those who know don’t speak. How could I speak? How could I ever describe what had simply happened through me, as if it was always happening but for a nanosecond I had fallen out of the way enough to see it?

 

I remember meeting with one of my greatest teachers in about 1975, whose eyes, when he regarded me, seemed vastly deep and yet entirely empty, as if devoid of personality. Yet, I knew back then that he was not empty. Now I imagined that he had lived in the state I had briefly glimpsed: a place beyond here and not-here, a place beyond whatever I know about “reality.” A year after my watchbird experience I saw how my version of anything is just another story, heard at any moment like any other version of the same or any other anything, occurring in a pattern that if not random was otherwise so complex I could see nothing but the seemingly random flow of stories, like watching all the tiny particles floating past my vision when I have scuba dived in turbulent water. I think now that I have been wrong for years, believing as I did that in biology life strives for ever-greater consciousness. I think instead that consciousness strives to be ever more alive, where it can have – wholly without opinion or judgment – a maximum of experience.

 

* * *

 

A year after my last chemo but still on hormone therapy, my sexuality and creativity, the twin pillars on which I built my life, are still both just gone. The merest thoughts and feelings about the areas my personal and professional lives revolved around are absent as if they’d been lobotomized away, as if they were never quite there. I do not think of them very often, and I rarely even think in terms of them: they are not present to be thought about. Where they once existed in my mind is not a nothing, though: there remains the barest echo of an engram so I can recognize their absences when something – my partner’s longing for the passion we once knew, for instance – calls them to my attention.

 

But the distant whispers of those memories are stirred so faintly and so little it is almost as if they had never even been. Almost. Whether sex will ever return for me in any thin and watery form remains entirely to be seen: I should know within the year or so after hormone therapy ends, as I should also know if my cancer has survived the aggressive defense the doctors mounted on my behalf. In addition to remembering and securing my memories I am writing this essay to test the other: can I write again, and do I care? There is a mythological quality to my wondering: I lost what I had built my life upon in order to stay alive somewhat longer; now I may see what new roads open. These are the prices of being alive: first that I will breathe, and second that I will not.

 

* * *

 

I want to remember my mortality, like the conquering Roman generals two millennia ago who, I have heard, had slaves standing behind them when they rode in their victory parades, repeating over and over in their ears, You are mortal, you are mortal, you are mortal.

 

* * *

 

According to the docs I tolerated my treatment well: two weeks after surgery I was in my office putting in a full day’s work, though I kept my legs elevated whenever I could and napped frequently. During chemo I felt severely nauseous only once and missed just one day of work because, in order to accommodate a sorely needed week’s vacation, I had to schedule my infusion for a day that left me sickest on Sunday and Monday instead of Saturday and Sunday. From the beginning I was not prepared to advertise my illness: I neither wanted to trade on my disease nor to have it define me. So in preparation for what I knew would be the loss of my hair, I had my hair cut short a month ahead of time and told my colleagues and clients I wanted to experiment with shaving my head but that my hair cuttress was reluctant to make such a drastic change in style all at once. When I shaved my head a couple weeks later only a few people recognized that I was being disingenuous and asked pointed questions, to which I replied honestly.

 

* * *

 

Life got very hard very fast that pair of years. An undetected allergy kept attacking me without warning throughout the year, with hives that seemed to inflame my brain so that I was in and out of bed and twice passed out on my office floor between clients. My second-oldest friend was diagnosed with a malt lymphoma in November, almost exactly in the month between my tentative diagnosis in October and its confirmation in December, and with lung cancer soon thereafter. My domestic partner had two cataract surgeries, the first just 10 days before I underwent my surgery. While we were having the romantic vacation weekend from hell at a famous San Diego resort hotel in May, where the acres-wide sound system blasted The Eagles’ greatest hits right outside our window from 9 a.m. till the party’s private fireworks began at 10 p.m., my dearest friend came close to dying at home with a severe bowel blockage the E.R. doctors totally misdiagnosed. She probably survived only because something sounded wrong to me and I phoned a doctor colleague who was a long-time friend of hers, who saw her on an emergency basis and continued to monitor her progress while she remained in the hospital. One of my aunts died the following summer, while I was in the midst of chemo, and D, my oldest friend, was diagnosed in September and died in March, less than one full month after I completed radiation.

 

In those two years I went from being energetically, enthusiastically, optimistically, and youthfully middle-aged to taking my first, very serious steps into a significantly diminished old age. Death had become my constant companion. I felt and referred to him – yes, to him – as riding at my left shoulder.

 

In the discworld fantasy novels of Terry Pratchett the character of Death always speaks in CAPITALS, and while I think Pratchett’s is a clever conceit, I have also found the metaphor accurate. Ever since I lay in bed recovering from surgery, catheterized, minding my breath, eased by pain-killers and sedatives, my awareness of death and its inevitability always speaks in capitals in my mental ear, even when it whispers.

 

* * *

 

 

My partner and I were in Santa Fe and things were not going as we’d planned. We’d anticipated the trip with pleasure, since we both liked the desert and the sense of mystery we felt at the old aboriginal ruins, and the last time we’d been to New Mexico she’d been so enchanted she thought about moving and starting a business there. This time, though, she had mountain fever and wasn’t up for a lot of activity, so we didn’t go out to the desert and surrounding towns nearly as much as I wanted.

 

My own condition did not help. Early in our stay my physician left a message that the results of my recent bone scan showed that I had developed osteopenia in my lower back, probably not from the chemo but from the combination of radiation and androgen blocker. To address this new development she wanted me to do weight-bearing exercise such as walking, but I was still fatigued from treatment and I tired easily, which compromised my ability to fulfill the prescription. Indoors, to where we felt somewhat confined by our combined ailments, the architecture of the house we’d rented for our vacation proved disappointing in its own turn: the “private” deck we’d been promised overlooked and was overlooked in turn by the decks of a dozen other homes, and what should have been a spectacular view from the bed of the Sangre de Christo Mountains was obscured by large pieces of heavy furniture that blocked an apparently pointless wall. As the days passed I came to feel disappointed, sad, restive, and grumpy, and my frustration showed on a day we went hiking through sage-strewn air up a gorgeous canyon full of darting birds and brilliant flowers.

 

“Oh, come on,” she said, sweeping with her arm the dramatic landscape beneath a sky piled high with turbulent, fast-moving clouds, and putting a fine spin on our circumstances. “This is a good day to be here.”

 

I watched some distant hawk soar, feathers glittering in the thin sunlit mountain air. Grudgingly, at first, I had to agree: this is a good day to be here. In fact, this is a good day to be nearly anywhere: this is a good day to be alive. Even more: this is a good day to be human. You are alive, I am alive, we are alive. This is a good day to be here. This is a good day to be. This is a good day. This is good.

 

That afternoon I felt the spirit of this goodness imbue me the way passion used to imbue me long ago. With the hot sun of the high desert angling down from the west, we stopped at a local Zen center and sat in one of the gardens. The orange air smelled rich and dry, and sounds emerged from all around us: birds, insects, lizards, a distant, sibilant conversation. As I meditated I could remember the feeling of passion I had known and hold it as a belief, though I had lost my way to the experience of it; it had been like a blessing to me I had simply taken for granted. I had always been a passionate person and I had liked being ardent. I was learning to hold the loss of passion as one price exacted by my treatment in order to let me live, for awhile longer at least.

 

Maybe it was there, that day, that I started to work deliberately to regain the experience of living in the moment, living every moment that I could, becoming aware of my breaths and steps again, actually hearing territorial birds sing, wind riffle the leaves, and hot cars spring their alarums, so every piece of data my senses picked up could help awaken me again, or at least might reconnect with me with the living veracity it bore.

 

* * *

 

Nearly 30 years before my diagnosis, right after my mother died, my father went through a predictable period of mourning, and then he began to date. He was an attractive widower in his middle-60s: fit, trim, healthy, and active in individual sports such as tennis and swimming; a ready participant in his city’s cultural activities from the symphony and opera to the theatre and his condo association; a renowned chess champion; well traveled in a middle-class fashion; more conversant with history and economics than most professionals in those fields; and comfortably well off after 30 years as senior partner in his own medical clinic and 45 years of steady, conservative investing. He learned to ride horses to accompany one of his women friends, to play golf with another, and settled at last with a bright, funny, sharp-tongued woman who had already outlived three husbands and owned her own clothing boutique close to a fashionable part of their town. A couple of years later he sold the last home he had lived in with my mother and moved with his second wife to a farther suburb, went into semi-retirement, bought a duplex condo with her in a vast spread of semi-gated Florida, retired, and moved.

 

In Florida they were a happy couple, photographed in formal wear for the local paper as donors at the openings of each season’s cultural events, active on the links and courts, cruising the usual destinations, dining out with other of their comfortably well-off associates. She called it “adult summer camp that never ends,” but it did: after a half-dozen years of fun in the sun she began to have noticeable memory lapses and odd outbursts of reasonless temper. Gradually other options were excluded and we had no choice but to acknowledge Alzheimer’s.

 

My father worked very hard to keep her engaged in life: he took her out, kept her social, and as far as I could tell kept her functioning for years after she would otherwise have declined into the particularly thankless dementia that accompanies this disease. Finally he was simply unable to handle what remained of her. He moved her to a care home that was acquainted with Alzheimer’s, and visited her several times each week. At first she resented him for not taking her home; then she missed him when he left and left her behind; then she started not to recognize him; then she started not to remember who she was. Over a couple of years she predictably deteriorated to a mindless form.

 

Each time I visited my father I accompanied him to see her, even though she did not recognize me. One day, several years after she’d entered the facility, we went to see her when my father was feeling distraught himself: he was nearing 90 and dealing with a battery of old-age infirmities and the depression that often accompanies such a condition. She did not know who I was and she did not know who he was, but she perked up smiling, glad to have the attention that came with us. Shakily, my father sat down on the couch beside her, laid his head on her shoulder, and hovered between tears and exhausted sleep, while she beamed out at no one, wife-maternal. He may have dozed. After awhile he pulled himself up and we said good-bye. For the first time in two or three years she tried to leave with him, but her ankle bracelet set off the electronic monitoring system and a nurse came to guide her, carefully, toward lunch. As she turned away from the door she seemed to forget even that we were there. My father was near crying, as he frequently was after these visits, and I was left with the touching, sweet memory of the two old people in a deeply intimate moment they may or may not have been able to share: his pain and despair allowed him to be vulnerable, and she appeared happy as I had not seen her in many years.

 

* * *

 

From the time I was recovered enough to care, I found myself scanning newspapers and magazines on paper and online, searching for news about innovations in cancer treatment. I knew that any advances I read about might only prove a boon for people 10 or 20 or 50 years in the future, but I was always looking for news about the possibility of a cure, in my lifetime, for me.

 

What I learned from my illness, meanwhile, had nothing to do with a cure. It had to do with my recognition that, for all the life-saving treatment I received from the physicians, and all the extra-medical care I received from others, and for all I could now do to optimize my own chances for survival, I could not save myself.

 

I had a long history with salvation. I had actually wanted a white horse for my seventh or eighth birthday, and now I could see how I took that image from the early 1950s cowboy shows I used to watch on television. The guy on the white horse was always strong and noble: he could always save the day.

 

I didn’t get the white horse, of course, living in a post-World War II tract house subdivision, and though I actually did once save someone near and dear to me from drowning, I didn’t ever save anyone in my white horse way. Still, the image lurked, and the desire lurked, and over the years I tried repeatedly to save whoever was in distress.

 

Then, during that visit to my father, I felt suddenly that I’d betrayed him because I hadn’t saved him. I was overwhelmed at the realization that I had even been trying to save him, and overwhelmed again at the realization that I couldn’t save him. I could not even fix him. I could not ease his suffering at all. From that realization it was but a small step to realize how much I’d felt, for most of my life, that I’d betrayed people because I hadn’t saved them, and that in trying to save others I had really hoped to save myself.

 

* * *

 

Now when I look at my face in the mirror I see a man, not a ghost. The depths I saw to my raw root essence have been fleshed out and over. I am alive again, nearly as ignorant of all I’ve learned as if I hadn’t learned it at all.

 

Nearly. For I have the memory of my experience, and even if it is the barest echo of an engram, like the most distant whisper of a recollected dream, still it tells me that I have looked into a place most people are blessed to look into only once, and I lived to tell the tale, this time.

 

I do not think I am smarter than I was, or wiser, or better able to know the secrets every waking person wants to answer, but I do know what I saw and I do know what I was, in some way, any way. And though I may forget what I saw, I will not forget that I saw it: this I will remember, as long as I may live.

 

* * *

 

 

 


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