Work and Days

Pathei Mathos: What I Relearned the Last 12 Months

hephaestus_athens_greece_1-25-15-2

Greek tragedy often ends with a succession of personal disasters that doom an Oedipus or Ajax — apparently part of a divinely inspired nemesis (retribution) to pay back personal hubris (overweening pride).

The latter flaw seems to grow and grow until fate strikes the arrogant at the most opportune but still unlikely moment: a Nixon sweeping to a landslide victory in 1972, only to self-destruct over the cover-up of a two-bit, needless burglary. It apparently at last brought out his long-held character shortcoming (hamartia), theretofore seemingly either not too serious or at least adroitly managed.

The Sophoclean idea of eironeia (irony) — Oedipus cannot see until he is blind in the manner of the blind, but all-seeing Tiresias, whom he damned as sightless before his own blindness — suggests that the nature of one’s fate is often tragically ironic.

The swashbuckling George S. Patton, who braved death in his drive to Germany and was worried about his role in a peacetime world, was paralyzed in a minor traffic accident shortly after the Allied victory — and on the day before he was to go home and leave postwar Europe for good. He died not on the battlefield, but painfully in bed in a military hospital in Germany.

The idea of karma within the traditions of Buddhism and Hinduism is somewhat similar to Greek tragedy, though more geared to action rather than attitudes causing future accounting for past behaviors. Modern Western religions also share somewhat in both Eastern and Western notions of payback, even while on Earth before the final accounting in the hereafter.

Still, it certainly seems innately human (and thus egocentric) to try to make sense of present bad and good fortune by reviewing causation through one’s prior thoughts and deeds. The problem with mostly positive moral introspection is the narcissistic element: good or bad things don’t just happen to a single individual, but harm many of the uninvolved or innocent around him. Why do the innocents of Thebes have to suffer plague for Oedipus’s hubris?

It is all narcissism to think that catastrophes center on one person’s behavior, even if earned, and especially when they hurt innocent others. Aeschylus seems cruel to talk of pathei mathos, learning from pain.

I can see the logic of tragic collective vengeance, but even then, I don’t quite believe that a divine plan led to Hitler raging in his suicidal bunker as the logical retribution to his sick Nuremberg rants a decade — and six million innocents gassed —  earlier.

At best, all we can do, I think in our ignorance of causation, is to cover our bets and tread lightly and remain observant — keeping humble and modest in occasional good fortune (given so often that our blessings turn out to be dependent on the work of other friends and benefactors), while staying resolute in more frequent times of chaos and disaster, to be able to help and offer sanctuary to others.

It is wise to remember the good dead and emulate their example rather than to be caught up with the mediocre of the present. I certainly spend more time recalling the voice of my mother than listening to the televised psychodramas of our elite. Faith and transcendence in the end matter most, whether for us who believe in God and an eternal soul, or for the more agnostic humanists who trust that one’s good works now can affect others following them, from raising good children to planting an olive tree.

I’ve been trying to sort such thoughts out after the most terrible past 12 months. Everyone has horrific seasons. Nothing seems worse than losing parents. Mine died far too early, my mother from a malignant meningioma that first struck her at 64 while an appellate court judge; my indestructible father from a stroke at 75. Like most, I’ve had a few scrapes, a variety of accidents, diseases, and operations in some scary places.

But all one’s health seems the minor melodrama that it always really was. My granddaughter Lila was born December 5, 2013. Something seemed wrong almost at once. An adroit diagnosis at Stanford Medical Center found neonatal cholestasis, a severe malfunction of the liver, involving spikes in conjugated bilirubin. For days we researched the likely and quite scary causes — biliary atresia, alpha 1 syndrome, and worse. None had good prognoses. All had scary names.

But 10% of the infant cholestasis cases were in the literature dubbed “idiopathic” and resolved eventually. No one knew why. And so miraculously did tiny Lila’s — or so we thought.

Her bilirubin returned to normal; she survived and she seemed to recover. But by six or seven months something else was clearly wrong, or rather “delayed.” By March 2015 she was far behind in terms of walking and talking. We spent hours each night reading about post-cholestasis syndromes in almost every American and European journal we could find. Surely that mysterious liver disease had caused the delay — and thus catch-up would follow?

Not really.

More strange symptomology followed. Three weeks ago, after genetic testing, doctors diagnosed her with something known as Smith-Magenis syndrome, described as a “deletion of genetic material from a specific region of chromosome 17 (17p11.2). Although this region contains multiple genes, recently researchers discovered that the loss of one particular gene the retinoic acid induced 1 or RAI1 is responsible for most of the characteristic features of this condition.”

Previously SMS was often thought to be a severe subset of either Down’s syndrome or autism. The strange and multifarious symptoms are too numerous to list here. A wonderful foundation does its best to fight for help for this tragic syndrome and I am going to try to support it according to my station.

And yet a wonderful thing arose throughout this ordeal. The more the bleak diagnoses and worse prognoses piled on, the more Lila smiled and exhibited the most outgoing and warm personality. (Was it due to the SMS trait of not feeling physical pain, or its associated symptom of natural exuberance with a tendency to hurt oneself rather than others?)

At 18 months, I’ve noticed that her efforts bring out the best in the entire family, a little less concern for self, a little more for those with less natural advantages than the healthy. We look for other Lilas more than ever now. She was named after my aunt Lila Davis (1917-1980), who lived 55 years in my present living room, here in the home of my grandparents, after suffering a most severe case of polio shortly after birth. From 5 to 25 I remember her as a brilliant, warm woman, trapped in a twisted body that could scarcely move, but which seemed irrelevant after talking to her for only a mere seconds. I confess I was worried, being superstitious, when my daughter chose that beloved family name, but now that tie through the halls of memory brings solace and a strange sort of continuity.

My other daughter Susannah was most worried about Lila’s first nine months. She frequently in 2014 drove up to Santa Cruz from her job at USC to visit and help out. But she was an empath, and that occasionally worried me. Susannah did not so much as sense others’ doubts, insecurities, physical pains, and depressions as to take them on to such an extent they almost manifested themselves as her own.

She seemed to have a unique ability to make others feel better, but all too often at the cost of herself feeling worse during these moments of strange osmoses. I would warn her that was not healthy — to agonize more about whether her professor was fairly evaluated and appreciated than whether he was a good teacher and scholar, or why someone promoted over her probably needed the extra pay more than did she. Empaths are not at all doormats, but often determined to succeed precisely to use their accumulated resources to become even more empathetic to others.

As children age, parents go through stages of relative focusing. The last five years I did so with Susannah. When she went to Chile for two years, I tried to email her daily and call weekly and send packages bi-monthly. When she returned and went to the MPP graduate program at Pepperdine, I was lucky enough to teach there as a visiting professor and see her weekly. When she went to work at USC we talked on her lunch hour each day.

As parents age, they gain perspective and calm, but also at the cost of growing pessimism or even a dangerous sense of preordination. These can be deadly pathologies as they take away the necessary spirit and audacity, so important in getting up one more morning and heading on to the next mission. (My 86-year-old grandfather was putting in new end posts in the vineyard on the day before he had a heart attack and died; my 80-year-old Swedish grandfather was breaking a young horse in his last few months.) Susannah seemed to know that and in the last year called me more than ever.

Her optimism about the human spirit was infectious. Vampire-like, we all drew on it. She would call and prod: “In that last lecture, did you make sure to call on everyone in class? Hey, Dad, I watched that YouTube video of a talk you gave, you should have been nicer to that guy who asked the mean question. Why haven’t you called your twin brother after all these years, after all, he is your twin! Do you have enough walkers available for the tour coming up? Oh, don’t worry, I sort of like driving the 405 at commute time.”

On the day before the 2014 election, Susannah called right in the middle of a lecture I was giving (I had not given her my schedule that day). She left a message, “Hey, Dad, I feel great. Got over that cold and so happy to be at work. Missed just two days, first missed days ever.” We talked at two. And I drove the next day to work. All was good as was normal.

But on the way up the 99, she called, “Hey dad, it’s lunch here. But I have a terrible headache and vomiting, and for some reason I can’t see very well.”

Chaos followed. In the next hours, there was an immediate family collective rush to Los Angeles. Misdiagnoses. An initial ambulance team visit had assured that she was fine — and then left. Wrong hospital. A blood clot, but miraculously removed. But then worse news: was it caused by an undiagnosed case of leukemia (at 27 to a seemingly healthy young woman, vegetarian, nondrinker, and nonsmoker?)

But at least it was a sort of leukemia that was treatable. But then on further examination it was not so treatable, but rather an aggressive form of AML. Then in hours yet another clot and another, far more extensive brain surgery. The WBC spiked at over 100,000. I wandered and walked most of those five nights in East Hollywood around the Kaiser hospital, trying to think of what regimen, what doctor, what hospital, what miracle, what prayer might yet save her. Over the next five days the unimaginable became all too real. And then she was gone as abruptly as she called to say she was suddenly sick. Leukemia is not a cold, so how can one go from robust to comatose in hours?

All the clichés that you all have heard about losing a child, and which we all of the uninitiated may have found strange or foreign — “I wished it was me,” “How unfair that parents outlive children,” “How did I cause this,” “Why didn’t I do that or this,” “I should have been a better parent, listener, friend, helper, benefactor, etc.” — I assure you turn out hardly to be clichés, but simply reflect over the centuries what is innate in every parent’s brain in extremis.

We occasionally had always gone to the local cemetery to put flowers on the graves of our ancestors . Selma has five generations of them. While there, I had always noticed that a few stones of other families were blanketed with flowers on any given day, and seemingly for years on end. How strange. But now? Not so strange at all. I found myself and others in the family doing exactly the same thing, yesterday and tomorrow. I built a classical commemorative plaza in the yard with stone urns and near life-size lions guarding a memorial bench, all re-landscaped with lilies and irises and Japanese maples beneath an arbor of wisteria, planted in 1880 — and now all growing so rapidly that it is almost surreal.

As we age and try to make sense of nonsense, we have only the solace that what is inexplicable now will be most explicable soon, and that we are not natives,  as we assume, here, but refugees from home somewhere else, and that what seems all too real and hopeless we hope is a just a dream of what will be soon very real and hopeful.

I would amend Nietzsche’s often quoted line, “from life’s school of war: what does not kill me makes me stronger,” to something like “what does not kill me, makes me sadder,” and leave it to fate whether sadder in the end proves stronger or wiser.