Briefly Describing the Indescribable

Yesterday I had a basal cell removed from the left side of the bridge of my nose.  I’d detected the cell myself, pointed it out to the dermatologist who said it was probably nothing.  I told her I’d only felt this particular intermittent pin-prick of pain twice before, on the other side of my nose, and each time it had been a basal cell.  The pore eventually bleeds and then it is easy enough to detect.   By then, past experience shows, a skin graft is needed after the basal cells and surrounding skin are removed.  The dermatologist told me she’d never known a patient to diagnose a basal cell, took a precautionary biopsy, which hurt like hell, and later called with the bad news– it was indeed a basal cell.  She sent me to a surgeon.

The surgeon who operated yesterday was a diminutive red-haired woman whose card identifies her as “Director of the Comprehensive Skin Cancer, Director of Dermatologic Surgery, Dermatology Department.”   She too expressed surprise that I’d been able to feel the presence of the basal cell at such an early stage.   She assured me that since it had been detected so early only a tiny line of stitches, and no skin graft, would be required to close the wound.  I’ll take my good news wherever it can be had these days.  No skin off behind my ear.

During the surgery, my eyes shielded from the high intensity light by a towel draped over them, she asked me what I did for a living.  I borrowed the phrase of a former judge friend (who always claimed it was my line), to tell her and two other doctors, and their nurse, that I was a “recovering lawyer”.   

I briefly described my subsistence law practice, defined subsistence for the nurse who was unfamiliar with the word (“like a farmer who grows just enough to pay the rent on his land and feed his family”) and was praised for my noble work protecting the city’s most vulnerable from eviction, a compliment I shrugged off sincerely as they were burning and cutting my nose. 

“If the smell bothers you, breathe through your mouth for a minute,” said the surgeon as the waft of seared flesh hit my nostrils.

In response to the follow up about what I am doing now I told them that I am writing a book about the remarkable life of my father.   

“How is it remarkable?” asked the surgeon, poking unseen at the basal cell.  I felt only minor pressure, after the painful injections of lidocaine.

A canny self-promoter would have had the canned thirty second elevator pitch talking points ready to go.  Always be selling, the mantra of the salesman.  If you have talent, sell it, otherwise you are a failure.  I paused for a second and said:

“He worked in the Human Relations Unit of the Board of Education in the sixties and early seventies, intervening in schools where there had been race riots.”   

Everyone was very impressed, by the sound of their collective reaction.  It didn’t occur to me then that the life of every individual is remarkable, for uncountable reasons.  We are trained from birth, in a commercial society like our own, to believe that some lives are remarkable, the life of a baby born a billionaire, for example, a baby!, while others, well… the only remarkable thing is that these determined fucks hang on for as long as they do. 

I described to them some of the things I learned researching my father’s life.  I told them that there were no child labor laws in the U.S. until my father was twelve, that, but for the worldwide Depression, he could have been legally employed as a chimney sweep or something.  I described the NYC Division of Human Rights’ report on an early seventies riot in a Brooklyn High School that my father and his team had been called in on afterwards.   

That report, I told them, would be unimaginable today.  It was a candid and detailed search for the causes and solutions of the tensions that led to the riot.  There was no blame or finger pointing, there was no agenda, except to try to honestly understand the dynamics and solve the problem that led to the violence. 

“Did they solve the violence?” one of the doctors asked, foolishly.   

“My father would take the gang leaders off for sensitivity training and he said the rivals often became friends, or at least no longer enemies. Peace would reign at the school, until those kids graduated and their little brothers and sisters began stabbing and shooting each other.”

Then I went into the domain that makes the man truly remarkable in my eyes.   This part of my answer they were neither prepared for, nor particularly interested in.  I reasoned, if it can be called that, that they had asked me a question and I was doing my best to answer it.   That the question had been asked out of mere politeness, and for the purpose of having me talk as another way of measuring whether I was experiencing any pain during the surgery, did not occur to me then.

“One remarkable thing is that this idealistic peacemaker, sensitivity trainer and advocate of social justice was called the Dreaded Unit by his children.   He had this bottomless reservoir of anger, which is, in a way, hard to reconcile with his social conscience, although, blah blah blah….”

I rattled on in this manner for a while, telling them of the pseudo-closure of the last night of his life conversation, and then summed up, saying the ms. was now almost 1,100 pages and that I was going to try to sell it and have it published.  They were even more clueless than I am as to how one goes about doing this.  I explained that I need to find a literary agent, who would then shop it to publishers.  I’d prepare a sample of the book, send it out in hopes of interesting an agent.

“You might have a black eye,” said the surgeon, which sounded about right.  She explained that since the basal cell was close to my eye, blood from the operation might show up in the eye.  I’d heard it metaphorically as well.   They will beat the fuck out of you, and make you wait, panting and full of dread, before they finally finish taking care of you.

An hour or so later I was roused from my drowsing in the waiting room with the good news that only the one slice would be necessary,  that they could stitch me up now.   

Back in the operating room I had another painful poke in the nose with a needle.  The doctor explained that many people would not need additional lidocaine for the stitches.  The next injection was also painful, as was the one after it.   I winced meaningfully.  The doctor’s next question surprised me.   

“Did you have red hair when you were a kid?”   

I told her it had been dirty blond, but my beard had always been red (it’s now white).  She told me she thought she saw some red in the mustache.   People with red hair, it turns out, have more sensitive skin and it’s much harder to anesthetize them for dermatologic surgery.   A person with dark hair, apparently, would probably still be good with the lidocaine injected an hour earlier.  Another injection, another stoic, but determined wince from me.

The notes they sent me home with a few minutes later told me I could expect mild discomfort and that I should take tylenol for it.  I was already experiencing some pain before I even left the hospital, it was beyond mild discomfort.  The nurse gave me two tylenols.   By the time I got home, twenty minutes later, the pain was excruciating.   

Sekhnet stood crying in the local pharmacy as I called the doctor twice to get a prescription for pain medication sent over.   The bridge of my nose felt like a snake had just finished biting it over and over.  I was told the doctor was in surgery.  I told the receptionist that it was irresponsible for a doctor to send a patient home in pain without pain medication.  After a little less than an hour from my first call the prescription reached the pharmacy and Sekhnet rushed back with the pills in hand.  A half hour later I had some relief.   

An extroverted L.A. lunatic named Larry Fisher spent some time in mental hospitals.  When he was not institutionalized he’d sing songs for change on the street, often making them up on the spot, custom jobs for a quarter or fifty cents.   Frank Zappa ran into him, liked the guy and produced an album called “An Evening With Wild Man Fisher.”  Interesting work, this double album (if I recall correctly).   At the end of the record Frank asks Larry, from the control room, “what’s the matter, Larry, don’t you like making records?”   

Wild Man Fisher says “they’re all fucking bastards, Frank, they’re all fucking bastards.”

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Divergent Approaches to Life

I realize it’ll be hard to write this without sounding like an overbearingly judgmental asshole.  I may be setting myself another impossible task today.   For one thing, we live in a society whose values I consider insane, one where “winning” is the only goal, admitting fault and sincerely apologizing are often derided as weakness, the marks of a hesitant loser.   We argue in order to make ourselves feel that we are right and the other party is an asshole.  We omit the best points of our opponent’s arguments, reduce them to the stupidest things they’ve said, the most foolish or despicable choices they’ve ever made.   We win!   We win!   (Or we take our ball and go home.)

We win like the twitching chicken that used to play tic tac toe in the Chinatown Arcade on Mott Street.   For fifty cents you could play tic tac toe with a scrawny caged bird.   Most often, at the end of the match, the sign would flash “BIRD WINS!” and the victorious poultry hen would peck hungrily at the two or three grains of dried corn that dropped down a chute as its reward.   It was impossible to beat the bird, she went first.   A skillfully played game would result in a tie, which was as close to a win as the paying human could come.   I saw my proudest, toughest third grader humbled by the bird, in spite of my warnings that the game was rigged.   His classmates laughed at him and, for once, Roscoe did not retaliate, he hung his head.    My friends, this is the world we live in, playing as purported equals on a grotesquely tilted playing field.     

I’ve spent much of the last twenty-three months reimagining my troubled father’s life.  It has been a productive exercise for me, getting a much more nuanced understanding of my difficult father, probably because I am wired that way.   My father was called the Dreaded Unit, and his dreadedness was the result of an implacable will never to be defeated.   The phrasing is deliberate.  He fought doggedly, on many fronts, and I see now that his desire was not to “win”, he had little hope of that, but was simply a desperation not to “lose”.   

Consider how disabling this need would be to a person, to a friend, to a colleague or parent.   My father was very smart, knowledgeable, funny, capable of great empathy, full of traits that made him good company– his burden was living determined not to be defeated in any contest, no matter how small.   He didn’t play games, as a rule, since the prospect of losing was so painful to him, I guess.  His need to not lose restricted his view of life to a black and white funnel through which he saw every encounter.  It was a worldview he expressed great regret about as he was dying, trying to imagine how much richer his life would have been if he’d allowed himself to see all the nuance, gradation and color in the world.

Here is the divergent approaches to life point I allude to in the title.   Among our choices every day: you can accept what is in front of you, God having granted you the serenity to accept the things you cannot change and all that, and not fret over the many things you are powerless to influence; you can look at life through a straight-forward, narrow lens, pursuing happiness and your goals and interests as best you can; you can ponder and try to make sense of things that make little sense, hope to reach an understanding of vexing things that will lessen their sting, enable you to remain calm in the face of them.   This is a clumsy attempt, on my part, to set the stage for the hideous sounding thing I am poised to say.   I will dance towards my point.   

My father, at one point toward the end of their friendship, reserved special venom for his long-time friend Caroline, who was always running to do good deeds but, when my mother was hospitalized after her cancer surgery, and later confined to bed for several weeks, apparently didn’t find her way five blocks to visit her old friend.   I wasn’t there, I take his word for it.  I don’t recall quizzing my mother about it, although I think she confirmed it.  My mother didn’t appear overly hurt or angry about it, but my father was inconsolably peeved.   

“Caroline always runs a full flight pattern,” my father grumbled, stoking his anger at her and selling the righteousness of it to me.  “Since she’s always running, she can’t be responsible for the things that fall through the cracks, she’s too busy, you know.   She didn’t once, in all her frantic running around being everyone’s best friend, manage to make the long five block trek to visit her good friend who was laid up.   If I confronted her about it, she’d put her ears down and become immensely guilty, but why would I bother?   The point is, that type of neurotic person can always justify why it was impossible for them to do something that would have been easy enough, like drop off a bowl of soup, sit for ten minutes with a friend who can’t get out of the house, because they run a full flight pattern.”   

The full flight pattern is one mode of coping with a challenging, frantic, sometimes mad world, particularly since time is money.   You keep your schedule tight, your day productive, you run from one meeting to another, one task to another, stay busy, stay on point, feel good because you are ticking off important boxes many times a day.  At the end of the day you’re tired, fall into a deep sleep, wake up early the next day and do the same thing, try to get to the things you didn’t do the day before.   With a full flight pattern you can never actually do everything you need to do on a given day, but that only makes it more important to run faster and book more flights the next day.   

I get it.  I read a quote once that many people in our society have an absolute dread of leisure.  Leisure (unless an earned vacation) is equated with laziness, and laziness is the deadly sin of Sloth.  A good person does not slack, shirk, relax until the jobs are all done, a good person is tireless and productive.  I kid myself, I suppose, that I am not lazy but doing the hard work of trying to recover fully from a traumatic childhood to lead a better, more useful life, attempting to leave a road map for strangers to make use of.  I tap these keys in a quiet room, make my thoughts as clear as I can, and feel I am not just lazily indulging myself but doing something important.  I am lazy, even if I am also doing hard work most people would not even consider thinking about.   

Here’s the divergent approach to life bit:

I had the luck to spend many long visits with my father’s first cousin Eli, during the last few years of Eli’s long life.  Eli, seventeen years older than my father, had been a larger-than-life, opinionated fly on the wall during my father’s infancy and childhood.  We eventually became close enough friends, Eli and I, that he felt compelled to give me whatever difficult insight he could express to shed light on my vexing relationship with my old man.   Eli greatly loved my father.  He told me that the roots of our family were impossibly tangled and supremely difficult to understand or explain.  It was worse than that, most of our large family had been murdered by people empowered by those intent on making Germany Great Again and there was no way to even explore any but a couple of living roots.  There were warring factions in our small family– one tiny group didn’t have any contact with the others.  Hitler’s work was done.   

Brief meta-aside: 

When we hear a story we want a fairly straight line, a narrator who leads us on a fascinating tour without a hundred distracting detours.  Every detour has a dozen potential side detours and each side detour a suite of hidden rooms.  Soon the story is as clueless as the world itself and there is no way forward.  I get that.  I’d like to avoid footnotes today.  Here then, to tie a bow on this for you.   

When I returned from Eli’s, with new stories that shed light on my father’s torturous childhood and on my father’s often baffling stances as an adult (we pretty much agreed about politics, but he found cause to argue every time we spoke on the subject), my father hunched into a defensive crouch and hurled curses at fucking Eli, the closest thing to a father he’d ever had, a man he loved.   

He discredited Eli in a long torrent of reasons Eli was full of shit.  Eli had a violent temper, was deluded, falsely insisting he could have been a millionaire several times in the course of his egotistical life, if others hadn’t screwed him, Eli had a cockeyed view of life, was a bullshit historian, Eli had been a despicable tyrant to his kids, all of whom avoided him, one of whom hated him.   Yeah, ask Eli’s kids about fucking Eli, he suggested.   My father fought so hard to fend off whatever Eli might have told me that it never came up for discussion.  It was all intensely painful to my father, I realize now, and it was his choice neither to discuss it or to attempt to get, or give, any insight into any of it.  The thing was to fend it off, even if it meant savaging the character and the soul of the cousin he loved the most. 

My sister seemed to share the D.U.’s horror that I was probing into this painful past.  She was offended on his behalf when I asked my father, when the three of us were on line at a wedding buffet table, if he still considered verbal violence the same as physical violence, in terms of the psychological harm it does.  He told me he did.  I asked him, in light of that, if he’d consider my sister and me to have been victims of child abuse.  He told me he did.  My sister glared at me angrily, empty plate glistening in her hand. 

Our father’s life, she once told me insightfully, a few years after he died, had been shame-based.  He lived with deep shame and his existence was devoted to warding off any sign of shame.  Shame is a motherfucker, no question about it.  Among violent inmates in prison, a psychiatrist who spent many years speaking to them came to understand, virtually all of them had done violence out of an unbearable sense of humiliation.   “All violence is an attempt to replace shame with self-esteem,” wrote James Gilligan, the man who’d spent years working with violent inmates. 

The point is, with our divergent approaches, some find comfort in moving forward, at the greatest possible speed.   The demons that may dog them in rare unscripted moments can usually be outrun.  Others find more comfort in this careful chewing, turning the thing over and looking at it from different angles, with different light sources.  I should not wonder that my sister has not responded once to the last six or seven slices of this manuscript I’ve sent her over the past year.   I imagine that even the most merciful, least revealing of these pieces fills her with dread of what the others might contain.   Everyone has their own style for minimizing pain. 

As for mine, there is incalculable value, to me, in trying to see as much of the vexing, endlessly fascinating picture as I can, even as it delays me in rushing toward the goal line to do my victory dance. 

Even as it sets me up as an easily mocked self-righteous asshole who has never learned how to make a living and who sits alone, feeling smart, as he edits his thoughts for clarity, that they might be read by half a dozen people once in a while.

Side effects

Last Friday I spent five or six hours being infused with a drug called Rituximab, or Rituxan, in hopes of curing my idiopathic kidney disease before it does permanent damage to my kidneys.   “It’s very well tolerated,” said the nurse who slipped the needle into my arm, using some perverse version of the passive voice.   I read the manufacturer’s information sheet she gave me, scanned a long list of mild-seeming side effects.   A dozen uses for it were listed, none related to the kidney in any way.   

The other guy in the infusion room was fighting death, and death had the upper hand, there was no way he was going to beat it for much longer.  He had a lot of stories, twenty-nine, Iraq and Afghanistan vet with a rare, incurable autoimmune disease he got after an IED attack (one in a million, he said, won the genetic lottery for that one) and not ready to fucking die.   

I left feeling fine, and grateful to be feeling fine.  I felt fine Saturday, and Sunday.  Monday and Tuesday too, for that matter.  Though, in hindsight, Tuesday I was feeling unaccountably weak, a bit of the old asthenia, it seems, as I took a slow stroll to Chinatown and back.  Asthenia was a listed side effect, it means weakness, it turns out.  Also, in hindsight, with my immune system suppressed, I probably should not have been on this crowded public conveyance late Saturday night.

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Tuesday’s delicious meal in an old Chinatown haunt, and the two mile roundtrip stroll, may also not have been the  best move, in retrospect.  Tuesday night I came down with a bad cold, which soon turned into the mother of all colds.  Was thankful for the snot channel I carve above my mustache, it came in very handy over and over as I went through a box of tissues.   Sleep was hard to come by, as breathing was a challenge in a lying position.   I got up many times during the night.  I coughed so violently that I pulled some muscles under my ribcage I didn’t even know were there.

I reviewed the list of known side effects, which included “night sweats,” explaining why my shirt was wet when I got up to make another cup of tea at around four.   Also alarming was the big spike in my blood pressure, consistently in the range just below where they urge you to seek immediate medical attention whether you have other symptoms or not.   It’s still very high, apparently another known side-effect my doctor was surprised to hear about when I checked in with him last night.   5% of those treated with Rituxan get this effect, apparently, and of those, 60% are in my age range, but the doctor probably doesn’t study the FDA reports on-line the way a worried patient would.  And, dramatic but largely forgotten now, the left calf that swelled suddenly to the size of a lumpy football, though that righted itself overnight.   Well-tolerated, of course, being a relative term to describe an immunosuppressive  drug that doesn’t completely knock the shit out of you, like the stuff my companion in the infusion suite was getting.   

As I wondered why my back teeth were suddenly aching Sekhnet reminded me that flu-like symptoms were on the list and that this sometimes happens when you have a bad flu.   I suddenly thought back to a visit with my cousin Eli, not long before he died, of a cancer his children thought it best not to tell him was killing him.   He had a fentanyl patch on and complained of the side effects.   “Read the fucking list,” he said, handing me a long scroll as I walked in.

Dry mouth? yop.  Constipation.  Yep.  Diarrhea?  Yop.   Heart palpitations, painful urination, trouble breathing: yop, yep, yip.   I must have read the first fifty of them, every one of which he had.  I got to irritability and he snapped “what the fuck do you think?!!!”  He didn’t have that much longer to be irritated, as it turned it, he was dead a week later.

Thankfully all I’ve got is a bad cold, elevated blood pressure and a bit of the old asthenia.  Going to try to get some sleep and then call the nephrologist, see if this miserable cold takes me off schedule for the second and last round of this wonder drug a week from today.

Waking from a Nightmare

The fucker shot me, by surprise, right there on Seaman Avenue.  We had a deal, I’d already given in, he was walking me at gunpoint to the subway, I was carrying the bag of evidence, ready to hand it over to the boss so he could cover up his crimes.  We were walking toward the subway on Dyckman Street, it was a nice day, we were making small talk.  

The guy stepped in front of me at the corner of Academy.   I stopped, waited for him to speak.  He said “you stupid fuck,” then shot me in the liver.  I fell to the street, feeling betrayed, thinking what a dick move that was.  Then I was awake, shaking my head.  It was all just irony after I woke up, no wound, no sweat, no shuddering, not even an after-shudder.   I’d learned, as an adult, to shrug a bad dream off.  

“Well, that’s what you’re supposed to do, Elie.  I don’t know where you learned it, but that’s one thing I never learned to do,” said the skeleton of my father.  “It wasn’t nightmares, per se, it was my daily, demon-ridden reality.  I never mastered the dispassion you need to recover from trauma, I was always flexing my muscles, weaponizing myself against any possible attack.  

“As your sister pointed out, if I lost a quarter it was the same, to me, as if you or your sister had been killed.   Sounds insane, and I suppose it is, but that missing 35 cents change from buying my newspapers would drive me crazy, I’d stalk from room to room cursing, turning the house upside down in an inconsolable frenzy.  Can I appreciate how insane that is, now?  Of course.  Could I have done anything about it when I was alive?  I never learned how.”

The only hope we have here, it seems to me, is waking from our personal nightmares.   I have little hope of convincing a world determined to annihilate itself, and everyone I care about, not to do it.   I can choose my personal reactions, somewhat.  That’s all the control we get in human affairs.  

“You know, Elie, it occurs to me now, as five hundred and thousand to one storms become more and more common, as the denial of human-made climate disruption grows shriller and more insane with each sweeping devastation — they do love to double down, these ignorant zealot fucks– that in seeing an enemy as an alien Other there is no chance of ever finding compromise, let alone wisdom.  

“We never talked about this, but in 1942, 1943, when the Nazis swept toward their ill-fated invasion of Russia, the Soviet Union, they crossed the area where my mother’s family was, in Belarus, and simply stomped all of them into the swamp where no trace was ever found.  As you know, after more than a decade of putting every available clue together, looking for a trace.  To the south, in the Ukraine, they finished off grandma and pop’s families, and you discovered exactly how horribly the end came to all of them.  

“A year or so of starvation, freezing, lice, disease, barbed wire separating them from the Christians, random murder, and then a march out to the ravine for the survivors.  Amid the banging of drums and the shouts of the drunken peasants some cries and whimpers could be heard all the way back in town.  Those were the sounds of grandma and pops’s surviving siblings and their families, as Ukrainians lined them up in rows, made them kneel, shot them in the back of the neck.  We never spoke of any of this, of course, and I and everyone else was dead before you learned all the details, finally, but there’s a point here.”  

Got you covered, dad.  The Jews of that area, not far from Khmelnitsky, a town named for famous Ukrainian nationalist and pogromnik Bogdan Khmelnitsky, had been persecuted for centuries.  In Vishnevitz, every so often, Ukrainians would ride into town, beat up and kill Jews, rape the women and girls, smash the Jewish houses and stores.   Then, when grandma was a teenager, Bolsheviks marched into the area, fresh from overthrowing the Czar, spreading the intoxicating story of world workers united, controlling their destiny, free from the polarizing hatreds of the past.   Grandma was swept up in it, along with many other hopeful, idealistic young Jews in that area, for reasons too obvious to explain.   This was around 1919.

Fast-forward to the 1930s.  The world economy had collapsed, there was a world wide depression, mass desperation.   The Communist government in the Soviet Union was consolidating its power on the surrounding areas, areas long disputed between Russia and Poland.  Including the Ukraine, at one time Russia’s “breadbasket”.  Stalin was in charge now, not exactly a political or moral philosopher.  Heavy handed, murderous, ends justify the means, psychopathic-type with a big mustache.   He decided to starve the Ukrainians into submission, killed millions with his forced starvation regime.   Made them starve next to mountains of their own wheat, guarded by machine guns, ready to be exported to hungry Russians.  

No surprise, a few years later, when the Nazis marched in, that Ukrainians would rally with the world’s most fervent anti-Communists, the Nazis.   Many Ukrainians were more than happy to lynch Communists and put bullets into Jews, aiders and abetters of the equally hated universalist Reds, and they felt supremely justified.   Not only was it no problem for them to take this bloody revenge, the ones who did so participated with zeal.  

“And to this day you shudder at the mention of Ukrainians, picture them like wild, demented monkeys, nimbly scrambling over the dead bodies of the Jews in that ravine, as their Nazi overseers grimly nodded,” said the skeleton of my father.  

Yes, but it’s pretty much an involuntary shudder, a mental picture that comes reflexively.  A second later I recall that there were always also loving, sensitive, decent Ukrainians on the scene, even as their vicious, enraged neighbors were burning Jewish kids.  

“Well, isn’t that special?” said the skeleton.  “I don’t mean to mock you, Elie, but, really, what the fuck?”

 

Death by American Healthcare (part 2 of 22,000,000)

I won’t even mention Obama, except to say “fuck that charismatic sell-out punk and the whores he rode in on.”   I buy my health insurance through the New York State exchange under the immensely complicated compromise scheme crafted under his watch.  I suffer from a serious kidney disease.   I am unable to get an appointment with a recommended nephrologist who accepts my insurance plan, one of fifty or more sub-plans offered by the corporation that provides my health insurance.  

The insurance company has now listed three doctors, each one highly recommended, as  participating in my specific plan.   You call and eventually find out, oops, devil is in the details, they don’t actually participate.  The insurance company blames the providers for not keeping them updated.   I blame corporate medicine for fucking people to death with a tireless mechanical dick.  In fairness to them, there is no regulation of their practices, so why blame them for taking advantage?

Nothing I can write here will ease my frustration or rage one bit.  I might as well bang my face against the wall until I black out.  That is probably a better bet than anything else I can do at the moment.  

I just note for the, hahaha, record, that the theory of Obamacare is that doctors are fungible, interchangeable, any doctor is as good as any other doctor.   Relationships between doctors and patients, and trust, are irrelevant.  Better to pick a name out of a hat and see a doctor than to have no doctor at all, goes the theory.  Sometimes that goes badly, as when a doctor does not believe in sharing diagnostic information with a patient with too many questions.  “I am expert,” says the doctor, “you deal with side effects from chemo,” and that should be answer enough.  You want another doctor?  Dip your hand back into the hat, motherfucker, maybe you’ll do better this time.  

Or maybe you will run full force into a wall, over and over again, until you lose consciousness.  That is probably a better bet for you today.  Have a nice day, your business is very important to us, please continue to hold.

 

Why the fuck am I keeping this on-line journal?

Good question, even as I have to jet out of here in a moment.  I write here, as often as I can, mainly for the feeling of being in control of things we humans have little or no control over.  It makes me feel good to write.   I write here to make sense of things as they happen, to the extent I can.  I find it helpful and hope that what I write is sometimes also helpful to someone reading it.    

I also like to keep the old writing pencil sharp, because I love the craft of writing.  It is very satisfying to see words lined up to bring something into focus.  I also hope, one day soon, to sell these little darlings like the adorable hookers they’re supposed to be, in the Free Market.  After all, any craft unsold is just a fucking hobby (he added, with gratuitous bitterness).

Today I made an appointment for screening of my skin for more possible cancer, long overdue in part because I’ve had to find three new sets of doctors in the last three years thanks to my man Obama’s beautiful compromise with the perfect, which disabled my ability to see the dermatologist I’d been seeing for years, a doctor I liked.  The earliest appointment for a new patient I could get today is for August 31, at 2:30 pm.  I took it.  I’m also on the waiting list for any earlier appointment that might pop up.  If I’d done this three months ago, instead of being discouraged when nobody I called accepted my new Silver level insurance, I’d have an appointment for next week.  Of course, I’m free to call as many other dermatologists as are on my insurance company’s list, in the meantime. This is America, after all.  In the meantime, I fucking write.

I’m being pressured to begin immunosuppressive therapy for my kidney disease.   This therapy includes three months of steroid treatment, in alternating months (chemotherapy type agents are administered every other month) each month beginning with three days of IV infusion of steroids.   I am trying to educate myself about the disease before committing to this pharmaceutical blunderbuss approach.   I read this just now, from the Mayo Clinic:

Membranous nephropathy (MEM-bruh-nus nuh-FROP-uh-thee) occurs when the small blood vessels in the kidney (glomeruli), which filter wastes from the blood, become inflamed and thickened. As a result, proteins leak from the damaged blood vessels into the urine (proteinuria). For many, loss of these proteins eventually causes signs and symptoms known as nephrotic syndrome.

In mild cases, membranous nephropathy may get better on its own, without any treatment. As protein leakage increases, so does the risk of long-term kidney damage. In many, the disease ultimately leads to kidney failure. There’s no absolute cure for membranous nephropathy, but successful treatment can lead to remission of proteinuria and a good long-term outlook.

You have to admire the candor of “in many, the disease ultimately leads to kidney failure.”   Regardless, I have my life to live, and a nice box of chocolates to buy for a 95 year-old birthday girl, who I have to dash off to see after a shave and a shower.    

I feel so much better having taken this little break to practice my word arrangement.  Thank you, Diary Dear.

The Excitable Optimism of Sekhnet

From time to time Sekhnet, who meets countless people during the course of her work gathering news for a national network, reports a fascinating conversation she had that relates to my life and plans.  She brings me a business card, or contact info written on a scrap of paper and urges me to call them.   Often things come to grief, since I am not always quick to make these potential contacts.   That most have so far been in vain is no excuse for my glass-half-empty pessimism.    

She heard a bright and funny man give a fantastic talk on becoming pitch perfect at sales meetings, during interviews of any and all kinds.  He pointed out that people have one chance to make a good first impression and clinch the deal, and that there are a hundred ways to blow it.  Read his book, aptly titled “Pitch Perfect” and you can weed out many of these ways, have a crisp phrase ready, delivered in the same winning style you see before you today, saying exactly enough to make your point crisply, and not one phrase more.  

Being pitch perfect is the difference between getting a major donation, or any kind of big yes, and getting that gassy baby smile and limp handshake at the end of a meeting too long by crucial moments.  The man’s talk and style were both excellent, she enjoyed it and found it valuable.  She bought his book, which I read cover to cover.  It was excellent.  

I took the next step and contacted his office to make an appointment for the four hour personalized master class.   It was, not surprisingly, $4,000.  I explained that I represented a small, money-strapped non-profit and was cheerfully told the tiny non-profit rate was $3,600.   My silence was met by an offer to do the half course, more than 60% as good as the full one, for only $2,000, certainly our budget could manage that.  

Well, I thought, the $2,00o, a quarter of our operating fund, could go for that or for two new animation set-ups.  I thanked her, even as a bit of bile was coming up in the back of my throat.

Sometimes helpful people, hearing my idea for the child-run interactive animation workshop, have suggested I pitch the idea on Shark Tank to get funding.   Shark Tank is a show where business owners try to strike deals to get funding from a group of wealthy sharks who evaluate the ideas looking for monster profits.

Experience has taught me the difference between what I was trying to sell and something an angel investor in the Shark Tank would salivate over. In Shark Tank the family that invented the fantastically lucrative Squatty Potty was looking for millions to take their product, a short plastic foot stool that made passing stools as easy and pleasant as operating a soft serve machine, to the next level, international super sales.   The investors were looking for a credible sign that every million they put in would have a good chance of turning into ten million for them.  It is straightforward.    

If the idea is to transform a boring public school classroom into a fun ninety minute imagination-fueled, problem-solving, peer-teaching playground where kids have the final say on every aspect of the product they are producing, a short bit of stop-motion animation, a process that leaves them collaborative, energized and engaged in learning and teaching, no angel investor worth his dorsal fin will so much as stop circling to sniff that particular patch of water for blood.  

“Sounds like a great idea, you got funding?  What’s your marketing budget?”   These are the first two questions anyone bright and practical asks when I finish my brief answer to “so, what have you been up to since last year?”  

“You have to find fellow idealists,” Sekhnet has always told me.  

I was referred to a non-profit called idealist.org, signed up.  Was invited to a mixer at a bar.   Went and met the people who worked for idealist.org.  They explained all the benefits of being a member.  I joined.  I haven’t had an email from them, or anyone else on the site, in years.  

I had an email from two guys who founded a nice outfit to introduce non-conformists with big society-improving ideas, a mutual help organization for idealistic types.  They would match people up according to their skills, interests and needs.  The first rule, when you met, was to listen to the other person’s idea and needs first and think about how you could help.  In the end, their emails stopped coming too.  It was a great idea, but I guess they didn’t have funding or an adequate marketing budget or business plan.

Having lunch with the sister of an old friend the subject of the nonprofit came up.  She thought it was a great project and then told me about a woman she’d recently met, a dynamic older woman, who was on the inside of Mayor Di Blasio’s Department of Education.  She was a great lady, and good friends with this woman’s good friend.  She shepherded many great new programs through the Education Department’s doors, knew how to get them funded and contracted as pilot programs, that was her speciality.  She was, literally the perfect person for me to meet.  In fact, we’d meet for Dim Sum, with the mutual friend, and I could run the idea by her at an informal meeting, that would be best.  

That offer turned into the old can-do idealist’s phone number being texted to me, followed by a series of supportive follow-up texts asking if I’d contacted her yet.  Presumably I was supposed to set up the informal Dim Sum meeting where the no pressure chat could unfold.  I called her a couple of times, introduced myself in short, hopefully well-pitched voice mails, I texted her this and then  this.   We never met for Dim Sum, nor did I ever hear back from her.  

It reminded me of the introduction I’d had a year earlier to the director of a large arts non-profit, with a twenty million dollar annual budget.  I was told this woman, a good friend of a close friend of mine, would love my idea and her well-funded organization could definitely help.  If our mutual friend had been present at the meeting, things might have gone better, the well-funded nonprofit could definitely have helped.  As it turned out, I was chided for my defeatist attitude before the meeting, felt dread on the way to the meeting, and the results afterwards were the opposite of helpful.    

Sekhnet remains undaunted.  Her mechanic’s daughter, it turns out, by pure whimsical chance, works at a nonprofit that features creative programs for public school children in Queens.  This friendly young woman was very excited about the student-run animation workshop, gave Sekhnet her card.  Sekhnet has learned about such things, knows that I’m currently concentrating on a book about the life and times of a man nobody’s ever heard of, and told the young idealist that it might be a while, but that I would get in touch with her.  

The same goes for the twenty-one year old idealist she spoke to in the computer department at Costco the other day.   He works at Costco and is completing a business degree at Baruch.  He and his brother love stop-motion, are idealists, think a student-run animation workshop for young kids sounds amazing and want to help.  Plus, he’s getting the business education to help with funding and marketing.  Win-win-win.  He was cautioned that it may take a while to hear from me.  

Thanksgiving I hear Sekhnet piping at me from across the room, calling me by my Christian name, if I was a Christian.  I never know what the deal is when I hear her urgently piping “Eliot!”   She’s talking with a smiling, friendly woman who it turns out works for Simon and Schuster.   She works in HR, hiring and firing like a demon, but she has found her home in publishing, after years in electronic media, and loves being around book people. She reads like a fiend since she’s been working there.  Sekhnet informs her I’ve written a book, I get a big smile.  

“It’s a manuscript, a first draft, around 700 pages.  It’s like wrestling with an anaconda at the moment, but I’m really enjoying it,” I say to the big smile.  

“I love book people,” she tells me, with that beautiful smile.  

I describe the idea that gets me out of bed every day, excited to write: a three-dimensional portrait of a great idealist who was also a monster, and how he rose from dire poverty to live the American Dream, a historian passionately involved in the historical events of his lifetime.  A dreamer and a destroyer of dreams.

I tell her that one day, as I was writing about his painful childhood, the skeleton of my father sat up in his grave to bitterly dispute something I’d just written.  I’d dismissed it at the time, went with it, had the chat, figured I could cut it later.  Then found him popping up again and again and now much of the ms. is an ongoing dialogue with the opinionated skeleton, a talk I look forward to every day.  

The smile continued as she told me it sounded cool, and that this kind of soul-searching memoir is currently a very hot genre and that if I find the right agent things could go well with this idea.  She then told us of a website where you can do a detailed search, by genre , of agents, and that no publisher will accept anything unless submitted by an agent.  Sekhnet jotted down the name of the website where I could find the highly specialized agent I will need to find.

I then told her everything I knew and felt about Jim Dale’s deightful audiobook performance of the marvelous Harry Potter books.  I promised her that she would love it, based on everything she’d told us about the books she liked best, then smiled, curtsied to Sekhnet, and went to have another muffin.