Category Archives: Ahimsa

Your Dream vs. Demons

In your dream you can get to a place in your life where you are mostly content. Everything is good, the sky, the water, the music, the company, the smell of cooking.  You are doing something you like, take pride in, have mastered, get paid a fair wage to do.   You are no longer subject to childish hurt and rage.  You have arrived in your mature form at last, relaxed, present and ready to enjoy the final chapters of your life.

It is not a crazy dream, although the individual iterations of the dream can be eccentric.  There are a hundred ways this dream can be twisted by the workings of the world, by our own spirits, by luck, by accident, by fate. There are many factors in this irrational world that are beyond our control: the constant maddening reality that things that make perfect sense are often impossible to put into practice.   This aggravating feeling pervades human affairs.  Commies wonder why everyone can’t share in the world as equals without exploitation, Reactionaries wonder why there is any controversy about the justice of the superior few exploiting their superiority to own everything.  People feel entitled to things and their bitterness when these things are denied can be without end.

I have a friend who wakes up tormented from time to time.  There is a voice in her head carping at her, a merciless voice familiar to many of us who were raised with some kind of cruelty instead of what children need.  I have another friend who recently woke up shuddering over horrors he’d seen in his sleep.   We discuss these things with each other because it gives some small measure of comfort to speak of these demons out loud to someone who listens with sympathy.

It is a great blessing to have a real friend.  Many people have not mastered the art of friendship.  Being a good friend requires a certain amount of diligence and work.  Friendship, at times, is not for the faint-hearted.  Look around at the challenges we are all up against in this brief curtain call before death.   I have friends who are in constant despair, looking at America in the age of the impulsive Twitter President, energetically serving himself and powerful, inhumane forces.  The solution of several of my friends to life’s challenges is to work hard and run pretty much non-stop, to pause is to have time to ponder, and pondering can lead to terrible thoughts.  As long as they stay productively busy they feel they are not sitting ducks to be confronted by life’s torments.  Busy, active people tend to go to sleep early, worn out and snoring hard by the time the late night comics come on.  I’m not really one to opine on this particular subject, almost everybody goes to sleep early compared to Nosferatus like me.

This world is a struggle.  It is a miracle, full of indescribable beauty, grace, kindness, collaboration.   It is also a curse, plundered by the greediest, those who have no hesitation to kill in order to control it all.   There are Howard Zinn’s fugitive moments of heroic group action, and we must remember these rare, inspiring episodes.  These times of unity are human beings at our greatest, standing together to confront a monster and sometimes forcing the monster to back down.  It is not possible to be brave all of the time, but it is always possible to be brave.  We have moments when our puny species rises to do heroic things.

I was thinking of a brief chat an old friend and I had in passing the other day.  She decided to visit her therapist to get help figuring out why she is not advocating for herself, selling her best, brightest idea and having the pay day she deserves.  In this dream, it is her inability to fight for and achieve recognition that is the defining failure of her life.  If she fought successfully and got recognition for her talents, she would have conquered her demons and could live a happy life, unvisited by them.  I imagine that is the theory, we didn’t discuss it for more than a few seconds.  

I was thinking some more just now about that dream, fixing unhappiness by achieving a goal that measures one’s accomplishments against the pros,  in contrast to the simpler dream of living a demon-free life day to day, independent of the judgments of the world of commerce.   I often feel the gnawing of writing every day for no pay, sometimes writing things I feel could be helpful, or contribute positively to the public discussion, and regret they will never reach more than a few people.  I would be happier getting paid, reaching more people, certainly.  I can relate to the feeling that this would be a major life change for the better.  I am, on some level, working toward that goal.  I should probably see a therapist about my slower than snail-like progress.  I just wonder how much it would really solve on the deepest level. 

There is nothing objectively bad about my old friend’s life.  She leads a good life, helps many people, has a wonderful family and a comfortable home at the service of their many friends and their extended family.   Yet, because childhood pain has no expiration date, nor any adult explanation that can neutralize it, she sometimes wakes with an evil spirit casting a cold shadow across her soul.

The dream: if I accomplish this public success, my life will have meaning and I’ll be relieved of the grief of waking each day as a fungible drone, doing the meaningless yet demanding work of a million other fungible drones.   That is not really the best dream, I think, though it is certainly a large part of the American dream– to be recognized as the unique, important celebrity/culture creator/brand I actually already am.  

The dream is to wake up each day without ever being oppressed by life-sucking dread, I think.  The demon is not conquered by looking without, there is no extrinsic cure, it seems to me.  I think demons must be seen as intrinsic to our particular psyches — you have to corner them in your own soul and make them leave.  They are crafty, they are mean, manipulative bastards, that’s why they’re demons.  But at the same time, they are only demons.  With courage and the right help, as my friend and I have both learned, demons can be put back in their place.

 

(Thanks to an old friend for editorial input on this post)

Fighting Monsters

Monsters inspire terror, which makes our fear of them unreasoning and debilitating.  We know this crippling terror from early childhood, and it is terror without chronology, just as fearful now as when we were first gripped by it.  We need to remember that monsters must be fought, and that they can be beaten.  It takes organization and courage, the kind of courage we give to each other during a long fight.  Monsters become monsters because of their own bottomless fear, which is something that can be used against them.  Monsters are bullies, and we all know all about bullies.  We have defeated monsters in the past, though it has sometimes taken a grotesquely long time.  

There was a time here in our great democracy, for around a hundred years, when states that favored lynching did nothing to stop the practice.   Lynching was considered an exercise in liberty,  enraged citizens dragging someone they suspected of heinous crimes to a tree, torturing them and hanging them by the neck until dead.    Souvenirs of the lynching were sold, body parts, post cards. For daylight lynchings, people brought their children to watch the spectacle, it was an early form of reality TV.    There was a good reason Southern Democrats in the Senate repeatedly filibustered federal anti-lynching bills.   They were racists playing to the racists they represented, racists who would have considered a federal law against lynching a betrayal.

The example of lynching is old, of course.  We no longer regularly lynch people here in America.   At least not with a mob and a rope.   In other places, sure, the equivalent can still be done routinely as a matter of foreign policy.  Trump sells $110,000,000,000 in high-tech weapons to the warlike Saudis who will use them against the children of the poorest country in the Middle East.  Obama sold the Saudis about the same amount of weaponry, as Dubya did before him, and Clinton before that.

It is merely the way business is done and there is no morality attached to it.  If a business is very, very lucrative, a way will always be found to sell the product and make a ton of money.  It happened for decades with cigarettes, even after their role in lung cancer and other disease became well-known, it is still going on full tilt with fossil fuels, extracted from the earth in more and more destructive ways.  If the product is, say, cluster bombs, or white phosphorous (which burns flesh to the bone), both widely considered a war crime to drop, and we make them here, and sell them to third parties — well, it creates good jobs for good Americans and generates massive profits for the company that makes ’em, and for the shareholders.  A lot of winners, a few losers, but that’s life.  

The problem, of course, for those of us who would fight monsters, is that we live in a world where countless monsters walk among us, ubiquitous and seemingly untouchable as the zombies on TV.  Is the biggest monster catastrophic Climate Change, which, in the United States, alone among the nations of the world, has a powerful, motivated, very wealthy lobby convincing the credulous that, in spite of impressive evidence of change, no change is even happening?  Is the biggest monster Martin Luther King’s three headed monster of racism-militarism-poverty?   That was the in-your-fucking-face monster that made it necessary to kill King.  Is the systematic dismantling of all programs to protect the public, well under way by the extremists who are now mainstream Republicans, the most immediately threatening monster?  

Or is the most dangerous monster a relatively small thing, like the deliberate appointment as Secretary of Education of a hereditary billionaire ultra-conservative Christian fundamentalist who has never set foot in a public school?   Or the appointment of a man who sued the Environmental Protection Agency more than a dozen times to head the agency responsible for protecting our air, water and soil?  Or is the appointment of a Supreme Court justice to the right of the extreme rightist Antonin Scalia the biggest monster?    

These are all gigantic monsters well beyond the immediate ability of even a well-organized, disciplined group of people to fight.  Our laws have allowed each of those things to take place and they cannot be changed until a massive citizens’ movement and a future election change the political landscape.

I can think of only one monster that is within my reach to take a poke at: unaccountable corporate health care in New York State.   While the complete lack of government regulation of the practices of health care  providers in New York State does not affect anyone I know but me, it affects the health and lives of hundreds of thousands, if not millions, of New Yorkers.  Let me take a long-delayed swing at this monster for a few moments, in the interest of finishing my stalled letter to the pugnacious progressive Attorney General of New York State, an official who also proposes legislation and advocates for it.

Dear Mr. Attorney General:  

At this moment when an American’s basic right to affordable health care is in jeopardy, I write to alert you to a consumer health emergency in New York State.  New York State has no government forum where a patient denied health services can have a grievance heard, even if that grievance is a matter of life and death.   I speak of my own experiences, which I’m certain can be multiplied by the experiences of tens of thousands of low income New Yorkers, many of whom cannot advocate for themselves.  

I write to urge your office to recommend a regulatory scheme to the legislature. The regulators would be able to quickly adjudicate matters like the denial of services by a cardiologist to a pre-approved patient recently released from a hospital for heart issues.   At present a patient’s only appeal is to the insurance company, a company that has multiple legal grounds to deny claims (incorrect NPI number, transposed CPT code number, etc.)   At the very least an ombudsman’s office is needed to supervise these widespread, unappealable, regularly occurring corporate abuses.  

This letter will provide a road map to the empty shell of the regulatory scheme currently in place in our state.  I will also provide examples of colorable fraud from my own health-challenging experiences.

As a self-employed New Yorker, I have purchased private insurance in New York State for over a decade, at first under the Healthy New York program and, since its abolition, under the Affordable Care Act (“ACA”).  When the State adopted the ACA it merged the consumer oversight functions of the Insurance and Health Departments (along with several other disparate agencies) into the Department of Financial Services, a department that does not investigate frauds against consumers.   

I am not writing to complain about the sometimes arbitrary costs of health care under these programs, but to draw your attention specifically to the lack of any kind of due process for New Yorkers who are denied needed medical services.  A New Yorker’s only appeal under current law is to the company who has denied the medical service.

As a matter of fact, now that I have written these words, I am going into the other room to fuck myself.  With all of the other pressing problems your office is vying with at the moment, it is hard to imagine that the death of a few more or a few less low income people, people who die disproportionately under our current health insurance scheme, amounts to a hill of beans in our publicity-driven world.  An impeccably reasoned posthumous letter, I am sure, would hold greater moral clout than the letter I am struggling to complete now.  I am, therefore, working on getting it to your office later, rather than sooner.   I will put the finishing touches on it from my hospice bed, assuming I am still able to secure one. Have a very nice day!

 

 

 

Moral Exemplar, Part Two

A friend, after a depressingly detailed lunchtime conversation about the current state of American affairs, begged me to tell her one positive thing.  I promised I would, and bought time by heading to the bathroom to think of something.   I smiled when I got back to the booth and spun out this idea.  

We’d both been lamenting the lack of a community of fellow actors to interact with.  The isolation one feels in the social media echo chamber can defeat all thoughts of positive group action.   This is partly by design: demoralized individuals in their private echo chambers are unlikely to act in concert in the face of tyrannies small or large.   How about this idea? I asked.  

I go to my local library and speak to the person in charge of assigning the public room there.  They have language lessons, computer classes and book clubs there.  I’d propose to run a six week animation workshop open to all ages.  I’d show her my thirty second demo on my fancy new phone.   Children must be accompanied by an adult (one adult per three kids) senior citizens are cordially invited along with anyone else who likes interactive creative play.   Session one everyone signs in, animating their name and learning the basics.   For session two, we animate various emotions, using faces and body language.   The remaining four sessions are devoted to producing a group message to the people in power.  

“Ooh, I like that….” said my friend.  

I agreed it was kind of subversive, having a group of random strangers acting in concert to make an animated one minute message to the unaccountable powers that be.   I already have all the materials and equipment packed up and ready to carry over to any room the local library can spare.   How about if we produce something really moving, narrated by children and old people?   The library puts it up on its website.   Say it goes viral?  

“That’s a great idea.  Are you going to do it?” she asked.  

“Probably not,” I said, stating the obvious.

Excellent Advice on what to ask

My friend (actual friend, as opposed to FezBook friend), posted this on the old purveyor of fake news and supremely targeted self-selected demographics.

How much better would the world be if we all learned to ask these five questions regularly?

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Extracting an Unconditional Apology

I don’t know if the exercise is really worth it, but, under certain conditions, with sufficient detachment, moral suasion, carnivore cunning and mild-mannered treachery, an unconditional apology can be extracted, even from a doctor or a lawyer.

The nephrologist had her receptionist call me after I sent her a summary of my recent attempts to get the update she’d promised on my recent biopsy.   This neutral summary was what lawyers call “making a record”.  Making a record is done to prepare the grounds for argument in the legal case– anything you write, like a memo, could be used as evidence.  

It’s like Trump’s lawyer Marc Kasowitz making a record that there is no evidence whatsoever that the president ever used anything beyond precatory, non-legally binding, aspirational language, when he had FBI-director Comey alone in a room and expressed his hope  that Comey would dummy up about Flynn [1] and lay off the investigation into the good guy’s possible problematic entanglements.  Therefore, as a matter of law, based on the explicitly precatory language all parties agree was used, no direct order was given and therefore there can be no obstruction of justice.  Plus, of course, Kasowitz added, although nothing he said implicated his client in anything, Comey was lying his ass off under oath while the president is always truthful.

My note to the nephrologist, which became part of my permanent medical record at the hospital once I hit ‘send’, presented the facts without editorial comment, but in a pretty dim light for the nephrologist.  Her actions did look pretty bad laid out end to end, the lack of communication was clearly one-sided.  It would look pretty bad to any department chair reading it by the time I ended asking  “am I missing something?” and signed it Eliot.   I also called the Patient Advocate at the hospital to express my concerns and find out why nobody was forwarding the medical records I’d requested.  

The nephrologist’s receptionist called me few moments later, to tell me the doctor herself would be calling me and that they would be forwarding the medical records I’d requested.  A short time later the receptionist called back to ask me to hold while she connected me to the doctor.  This transfer took just under two full minutes, which, while annoying, was not comparable in its effect to her previous behavior and attitude.  She began to remedy that as soon as she picked up the phone.   After a moment of silence she asked what I wanted.  

“I want the update on what the biopsy showed about the progression of my kidney disease,” I said, and things went quickly downhill from there.   I was soon told that I have unreasonable expectations, am a very nervous patient, smart but also nervous and with unreasonable expectations.   I told her I expect people to do what they promise to do — until I learn what it is unreasonable to expect from a particular individual.   I stop expecting what experience teaches me to stop expecting.  I disputed that I have unreasonable expectations, took exception every time she mentioned it, but since it came up several times, it got me to wondering about the phrase.  

There were several attempted if-pologies (tip of the tam o’shanter to Harry Shearer) for how I apparently felt as a result of our mutual miscommunication.  I rejected each of these pseudo-apologies forcefully, explained what was objectionable about such false, conditional, self-serving apologies.  She was not taking responsibility for her actions and inactions, she wasn’t apologizing for how those actions and inactions effected me, she was apologizing about my unreasonable expectations, fears, excessive nervousness that made me see monsters where there were only puppy dogs and kittens.  (detailed anatomy of an if-pology here)

In the end, seeing the folly of having a conversation with such a desperately defensive person, and sick of having to raise my voice to cut in whenever she cut me off and talked over me, I told her she was a good person and wished her a good day.  Then I took a few deep breaths, muttered politically poisonous words that should not be printed, took a few more breaths and called the kind woman at Patient Relations at the hospital.

I thanked her for her earlier kindness and gave her a report of what had happened since she made her call to the nephrology department.   When I reported to her that the doctor told me that I had “unreasonable expectations” and was a “very nervous patient” Joann seemed genuinely offended that a doctor would say those things to a patient she’d been ignoring.  I asked Joann for the only actions I could think of — to inquire about a waiver of my $237 out-of-pocket payment for my next office visit and a recommendation for a less combative in-network nephrologist.  (Thank God I have Obamacare, Romneycare, Patient Protection and Affordable Private Corporate Health Insurance Out of Pocket Deductible Care, Lobbyistcare,  VultureCapitalistcare, HealthInsuranceandPharmaceuticalindustrycare,  Corporatepsychopathcare, is all I can say.  Can you imagine how prohibitively expensive and stressful the visit might be without health insurance?)

I then spent the next few minutes trying to figure out how not to seethe.  I went to the post office.  Not generally the best cure for a need to seethe, but today at 4:00 the place was virtually empty.  I joked with the guy behind the window and we both had a few laughs.  The guy at the next window got in on it, and another patron did too.  We were all laughing together on a Friday afternoon.  All the sweeter that we were like the United Nations, representatives of four continents.

The guy helping me, the representative of Asia, was gone for a long time, came back with my stamps then stood there, looking down, seemingly texting for a long time, while I stood there waiting to pay him for the stamps that were right next to him.   I watched him bemusedly, as he regarded his phone with a pleasant smile, tapped away, seemingly got a funny text in response, paused to savor it, tapped his reply.  It went on for a few minutes. I just looked at him, somewhat in awe.  Then he asked for my credit card, which I gave him.  When he handed me back the card I asked if I needed to swipe it.  He smiled, shook his head and held up the small device that he’d been tapping into.  I started to laugh.

“Oh, man,” I said to him “that whole time I thought you were texting.” He laughed. 

“No, really, I was fascinated, I was admiring how brazen you were, how you seemed to be taking your time, really enjoying each text that was coming back from your friend.  I figured you were typing ‘place is empty, one hour to weekend, one asshole customer waiting, just standing there, not doing anything, blank face, stupid expression, LOL!'”

We had a last yuk and I headed back up the hill to my apartment, 40 U.S. stamps and 2 stamps good for Europe in my shirt pocket.  Plan to drop a note to Macron, just to tell him his name is hilarious and ridiculous.

I sat down and watched the mirthful, merciless late night comedians on youTube, all of them with millions of hits, slowly turning POTUS over a slow fire, slathering on the barbecue sauce (for all the good any of it does). I was finally beginning to feel a little relaxed, after more than a week’s escalating, endless battle with a stubborn jackass of a nephrologist.  My phone rang.  

It was the nephrologist, she felt terrible, she’s not that kind of person, not malicious.  

“I never said you were malicious.  I don’t think you’re malicious.”  

“I’m calling to tell you I feel terrible about our conversation.  I don’t sleep at night after a conversation like that, I’m not that kind of person, I do feel very bad about our miscommunication.”  

“Don’t feel bad about that,” I said, ” it wasn’t really ‘our miscommunication’ anyway.  If you want to feel bad about something, feel bad about not doing the empathetic thing, the thing you’d want me to do if our places were reversed.  Feel bad about telling me I have ‘unreasonable expectations’ and that I’m a ‘very nervous patient.'”  

“I never said you had unreasonable expectations and  I don’t say nervous in a bad way, I’m very nervous myself…” she said quickly and with utter conviction.

“You repeated several times that I have unreasonable expectations for expecting to hear back on test results, but I don’t even care about that right now.  If you want to apologize, at least know what you did that you should feel bad about, what you’re actually apologizing for.”  

“I apologize if you feel that I was neglectful of…”  she began.

“No,” I said, “I don’t accept your conditional apology,  forget it.  You cannot apologize  for how I may have felt.  You can only apologize for what you did.  It’s no apology if you condition being sorry on what I may or may not have subjectively felt.”

“You apologize for what you did, that you understand now was wrong.  ‘My actions hurt you.  I was wrong.  I am sorry that I hurt you.’ “

“It’s no apology to say I’m sorry if you were hurt.  You have to acknowledge that what you did was hurtful, would have hurt you too, or anyone else.  That there was nothing unreasonable about being hurt by the hurtful thing I am so sorry I did to you.  Then you have to promise to try hard not to do it again.  That’s an apology.”

“I apologize without conditions,” she said.  

I thanked her for that, and happily accepted her apology, although with conditions.

God must have been smiling down on me in that moment, for the call from her cell phone dropped, she texted that I had suddenly stopped talking, that we seemed to have lost connection.   I texted back that she must have gone out of range, I was still sitting at my desk.  I ended thanking her for the call, and the apology, and wishing her a good weekend.

But do I really?

 

[1]  The greatest accomplishment of Flynn’s military career was revolutionizing the way that the clandestine arm of the military, the Joint Special Operations Command (jsoc), undertook the killing and capture of suspected terrorists and insurgents in war zones. Stanley McChrystal, Flynn’s mentor, had tapped him for the job.  source

 

 

 

 

American healers

The first example is a veterinarian with a thriving West Village practice.   He informed us last week that, sadly, the second set of blood tests confirms that the cat has a terminal kidney condition.   We can hope to extend his life, have him around a bit longer, he said, if we learn to give him subcutaneous hydration and do it daily.  

We immediately make plans to visit his office, to learn how to apply this liquid through a line and a needle  under the flexible skin and fur on his back. We also have a few questions for the vet.  A young technician gives us the demo.   The doctor does not so much as stick his head in the room, nor does his colleague, another vet who sent some interactive and empathetic emails to Sekhnet.

The following day at home Sekhnet expertly applies the needle, I wrangle the cat, run the line, squeeze the bag to hasten the flow of the liquid.   The Baron tolerates it reasonably well.   I wind up emailing my questions to the vet.

One is about stopping the fight to give him a hated, foul tasting phosphorous binder by syringe forced into his mouth.   Although it’s a primary weapon in slowing feline kidney deterioration, it makes the Baron furious and bitter and we’ve decided to stop forcing it on him.   I ask about an alternative powder form we may be able to mix into his wet food or treats somehow.   I also ask how far along the downward slope of the chronic, deadly disease Skaynes is, in terms of kidney function now vs. end stage kidney function.  I express our disappointment at not having been given a moment to bounce these things off him in person when we were at his office to see him the other day.

He writes, helpfully and sympathetically:

He does have what is termed chronic renal failure, meaning he.s losing his ability to filter and eliminate fluid waste, conserve water and control electrolytes.  It does tend to be progressive at a very individual rate.  They can be around for six months to a couple years, is my experience.  His blood pressure result was 165, which is normal.  He should get the low protein diet daily, with fluids.  I.m not crazy about the aluminum hydroxide either.  If he is becoming intolerant, then I say stop it.  Try the epakitin and we.ll check his blood again in three months.

Then, addressing my human concern, as a human who just brought a fatally ill animal he loves to a doctor for beloved animals and was disappointed not to get a moment of the doctor’s time:

I usually have technicians provide fluid demos and do blood pressures.  Let me know in the future if you have concerns I specifically need to address.

I can read this now, four or five days later, in a neutral light.   He is telling me his ordinary procedure for these demos and letting me know that in the future I should not hesitate to make my concerns known to him if they were not addressed by his technician.  He was probably taking care of his day’s correspondence and didn’t pause to realize he was writing this to a person with all the concerns of someone bringing a dying long-time pet to the doctor (plus, unbeknownst to the vet, anxious about impending news on his own kidney disease).  In a better world, where he would have had the time and sensitivity to look over the email before sending, he could have done much better.  Reading it now, I hardly see what infuriated me so much when I first got his reply.

At the time I got it, ten minutes after I wrote him, it hit me like poison.   I read his email shortly after the first time we gave the Baron the fluids, and I decided we were done torturing him by forcing the aluminum hydroxide down his snarling mouth.  I read the vet’s last lines as:  you should have told me if you had concerns, not really my fault, kind of your’s, that you didn’t get to express your worries to me.   Kind of odd for a person who had specific questions while he was in my office, to be whining about not asking them a day later.

It was a slap in the face, piss down the back of my leg, a knee in the privacy (as a kid in Harlem once said).   I felt, in light of my deep surge of righteous indignation, that I’d been admirably restrained in writing an email that, in the cooler light of a fresh read a few days later, I’m glad I didn’t send.  I wrote:

Thanks for this update.  Glad to hear his blood pressure was normal.   We’re discontinuing aluminum hydroxide and ordering Epakitin.

As far as your last sentence, why would somebody bringing a beloved pet with a recent diagnosis of a fatal disease need to alert the vet to having concerns?  In your experience, is there anybody in that situation who does not have at least a couple of concerns?

An apology, no matter how mild, for not giving us a minute or two the other day, would have worked a lot better than citing your usual policy of having technicians conduct the demo in how to prolong a chronically ill cat’s life.

Eliot

I would have been within my rights, perhaps, but I’d be making things snide with a busy, caring vet who arguably hadn’t written the most sensitive sentence he could have come up with to address our feelings.  Assuming he was even capable of writing a more compassionate sentence.   Coming up with a sentence like that is not within the repertoire of most people, even highly decorated poets of public relations struggle over perfectly calibrated expressions of professional/personal sentiment.  

My reply, though superficially polite, would have hurt the feelings of someone who most likely hadn’t meant to hurt Sekhnet’s and mine at all.  On the contrary, he’d just answered all of our questions in a reassuring tone, what the hell was I chastising him about?  It would have confused him, struck him as completely unfair, insane, even, and it would have pissed him off.  It would have done nothing good for me, Sekhnet or Skaynes either, or any of our future meetings at the vet’s office.

My friend’s father’s father collected wise little sayings that he wrote, in a meticulous hand, on small cards.  They were written in Hebrew, and the small stack of words to live by were read by my friend after his grandfather passed away.  One said: all delay is for the best.   The meaning was, if you feel you must act, it is better to pause first, to consider, to calm down, if needed, turn the planned action over in your hand another time.

 

Example Two

I caught myself this afternoon ready to punch out the fucking nephrologist.  It took very few text and email exchanges before it got out of hand and, once it did, I stopped myself from writing back.   To be sure,  I did unleash a nice, clean, snapping punch to her fucking smug, self-justifying, bureaucratic, inhumane, insecure face.  I left it in my drafts folder, it laid her on the canvas groaning.  But I did not send it.  

Flashes of her worst traits, her more hideous assertions, flew out at me unbidden all evening. She is now demanding I pay her another $237 out of pocket, and visit her office, any Friday I choose, for the results of my May 26th biopsy, results she’d started giving me over the phone last week, results she promised to phone me about as soon as they came in.

The results came in, possibly days ago, these were the only medical records so far not sent directly to me, the patient.   Then I was treated to no reply, insistence and unrepentance, all of the highest order.  Thoughts of her overbearing insecurity and shabbily slapped together legalistic attack on a patient, anxious and aggravated after 12 days (thirteen now) with no news on his kidney biopsy results, enraged me anew each time I thought of this distasteful creature’s behavior.

I have been diagnosed with a kidney disease called idiopathic membranous nephropathy.     At least I hope it’s idiopathic, meaning they don’t know the cause and it’s not secondary to some other more systemic autoimmune disease like Lupus, MS, or some kinds of cancer.  The disease is a progressive autoimmune disease that ends, if not cured first, with dialysis or a kidney transplant, or, if those options are unavailable, death.  

It is obviously important to know what stage the disease has progressed to when deciding on treatment options, most of which involve long regimens of intravenous steroids and immuno-supressant drugs, similar to the cocktails used in chemotherapy.  A biopsy is the most accurate way to determine what stage the disease is at.   So I had the biopsy, thirteen days ago.  

When this nephrologist first tested me in April, to see if I was among the approximately 33% of membranous nephropathy patients who undergo spontaneous remission, I got test results emailed to me by a corporate third party.  I contacted the doctor’s office, since the most crucial test for this disease, the ratio of creatinine and protein in the urine, had no standard range I could compare my numbers to.  The test result/billing/appointment bot suggested I call the doctor.  I did.  I called again.  I wrote.  

The last thing I wrote used “unconscionable” to describe incomprehensible test results sent by marketing/billing/medical record bots to anxious patients without medical interpretation attached.  It was, in the end, five days before she called to say, after apologizing for the terrible delay in getting back to me, that my numbers were slightly worse than in the January test.  I was not experiencing any kind of remission, the disease was progressing.  

When the numbers were retested in May she wrote preemptively to tell me she had strep, had gone to the Emergency Room, and couldn’t talk on the phone.  She promised to call with the results, as soon as she could talk on the phone.   I wished her a speedy recovery, not bothering to point out that strep had no effect on her ability to type.  Again it was five days with uninterpretable test results before I heard from her.  Again the test showed the disease was progressing.  She thanked me for my concern with her strep, in place of an apology for once again keeping me hanging for five days.  

So I had a biopsy, thirteen days ago.  This biopsy would show, I was told, exactly what stage my membranous nephropathy was at.   Based on the stage, it would be more or less urgent to begin steroid-heavy immunosuppressive treatment, the only option in American corporate medicine, immediately.  

I had a call from her as soon as she got the preliminary results, a few days after the biopsy.  There was some good news, no scarring on the kidney.  This means once the underlying disease is cured, if it’s cured, the kidneys should be as good as new.  She promised to get back to me soon with the rest of the report.  I never heard another peep from her.  On day eleven I emailed:  

It’s now eleven days since my kidney biopsy. Any news?

On day twelve I wrote: 

Twelve days with no results from my kidney biopsy.  Any idea what the delay is?  Are they growing a culture?  Your insight will be appreciated.  

After a few more hours with no insight, or anything else, from her I texted her on her cellphone, a number she’d given me to follow up on the biopsy results.   Immediately after my text she made an appointment for me, two days later, on a day I’d already told her was impossible for me to come in.  She acknowledged in a text that I was anxious and then said she truly believed we had discussed the date for the appointment she made and offered no word on the results of the biopsy.  She got very shitty when I told her to put herself in my position, waiting for this news, and getting only silence and bureaucratic non-replies.   Clearly her feelings were hurt.  She wrote:

Dear Mr. Widaen,
We had preliminary conversation about your renal biopsy result over the phone (the week of 6/29/2017) and discussed that appointment 2 weeks after biopsy would be adequate time
to receive a full result that we would discuss once you come in.
I am sorry but I do not remember that you said this Friday was not good (I remember last Friday was not good) and I truly believe we set the time to meet this Friday.
However, it is not an emergency and if this Friday is not good for you I can meet with you at your earliest convenience next week or the following week.
I understand that you are anxious but I was not able to reply immediately.
For further communication, please use my chart and you may call office to leave an urgent verbal message.
Please let me know when you would like to come for an appointment.

>I replied, insula aglow:

This is very similar to your previous replies. Last Friday was not good because it was the day of my renal biopsy, as you could probably know because you were there [this was a low blow, and an inaccurate, emotional blunder, my biopsy was actually two weeks ago Friday-ed.]. I am anxious about the results, which should come as no surprise, and it is neither professional, nor humane, to respond in this bureaucratic fashion. Imagine how you would feel in my situation, twelve days after a kidney biopsy, if you can.

Then it was her turn to be the tough guy, doubling down on the bureaucratic prerogative:

Mr. Widaen,
Your renal biopsy was on 5/26; 2 weeks after biopsy would be this coming Friday and that is what I had on my schedule.
Despite “lack of communication” I do remember about you and remember to reserve an appointment spot for you.
Again, I am sorry for assuming that you are coming this Friday and we would have a full discussion as planned.
Please let me know when you would like to come in for an appointment.

Fool me three times, go fuck yourself.  I was angry at this point.  She’d promised me a follow-up telephone call as soon as she had results.  She promised me this again when she called with the preliminary results about the lack of scarring a week earlier.   Instead, she claims to understand that I am anxious, equivocates about a “lack of communication”, corrects me on my stupid error about the date of the previous Friday, claims to have never forgotten about me, even as, coincidentally, she remembered my case immediately after my third reminder text, apologizes for an incorrect assumption, gives no further information on renal biopsy and the status of my disease and stands by her previous offer, to have me come in and pay her $237 out of pocket once again to find out what the biopsy showed.

You can picture how many new assholes my terse email response ripped in every part of this poor woman.  I, thankfully didn’t send it.  Brooded for hours longer, then finally calmed down enough to remember that you don’t win a fight with somebody like this.  This morning I sent her a secure reply:

Please send the biopsy report to my primary care doctor, so and so, here is his fax number (…) his telephone number is (….).  Thanks.

Now, with my metrocard, on to the subway to see the sights!  Up, up the motherfucking high road, pirates!

Anger, like longevity, has its place

My father, like most people who were viciously abused as children, was subject to rage.   When he was treated unfairly, received shabby customer service, when he confronted the most brutal things his government was doing (he spoke less of this category as time went on) when he felt disrespected, he could be angry for days at a time.  He’d marinate in his anger and hurt, ruminate, as they say now, chewing on the indigestible cause for his righteous rage like an agonized ruminant.  

He sometimes experienced physical manifestations of his anger and frustration.  During my childhood his psoraisis, which covered much of his body, would sometimes flare up.  His skin would crack and bleed, the tar baths and light treatments he took at home would no longer help and the only relief would come in a hospital.  In the hospital, the pressures on him and his frustrations greatly reduced, with only the job of getting better to focus on and many treatments employed, his tortured skin would recover within a few days.  

Being the son of an angry man, a father who often took his frustrations out on my sister and me, with projection often coming into play (my teenaged acne was my hate and rage oozing out through my pores, for example), I made overcoming my own anger a lifelong priority.  Yet any reader of these posts will quickly see that, while I have spent a long time consciously practicing my secular version of ahimsa, I am still angry enough to, for example, wish horrible retribution on pampered people who cheer America’s military might while ignoring the indiscriminate slaughter of innocents during air strikes of dubious military usefulness.    It is not a gentle thing to opine that it will take having their own children reduced to chopped meat in a drone strike to give them any insight into the highly destructive evil they are applauding and, in some cases, profiting from.

I realize now that it is not always desirable, or even possible, to avoid anger.   We are correctly taught that the only thing necessary for evil to flourish is for good people to do nothing.   Evil, injustice and indifference must be opposed.  It is best, of course, to do it effectively, without violence or escalation, without letting oneself be consumed by the anger.  Ahimsa includes speaking calmly and clearly to evil and indifferent people and being steadfast in continuing to do what needs to be done to change the intolerable situation.  One thing that is necessary for operating this way, or at least very helpful, is a like-minded community, or the whole-hearted support of at least one other person.

Driving in the rain with an old friend the other day the subject of anger came up, as it occasionally does between us.   Raised in a home where he was also subject to irrationally harsh treatment at one second’s notice, it is not necessary for either of us to make more than a quick reference to set the stage for a story of a near-confrontation with an abusive type.   We both have become better at dealing with overbearing, abusive types, but the frayed nerves and the childhood reflexes, the palpable danger of reacting emotionally to the situation, are all still very much there.  

He seemed mildly amused that I was “unable” to refrain from telling a harsh truth to a bureaucrat, the head social worker for a hospital where a ninety year-old friend of Sekhnet’s languishes in misery.   I acknowledged to the social worker that the old woman was difficult, pointed out how depressed she was, but was obliged to express my doubt that the social worker was taught in Social Work school to blame the patient for her own unhappiness.  I included this opinion in an email seeking, for a third time, an answer to a straight-forward medical follow-up for the old woman.  My friend smiled and shook his head, here I was, still unable to keep myself from throwing a little sterno on the old fire.

I spared him most of the details, just told him I was responding to a bad email written by a non-responsive jackass who was abusing a friend of Sekhnet’s and blaming an old woman for her situationally appropriate misery.

The details: instead of providing the results of the eye exam the woman had a month ago, and telling us why new glasses were not being made, as she promised, the head social worker once again promised to follow-up but spent most of the email detailing what a stuck up, miserable, uncooperative snob the patient is, how she refuses to make friends and to participate in the many monthly programs they periodically hold for patients.  A tour de force of blaming the victim, the best defense a good offense, ’twas like the breath of an unwashed asshole, venting. [1]

The old woman feels isolated and imprisoned.   She is depressed by the objectively depressing situation she finds herself in.  Many of the other patients on her hospital ward are demented, many speak no English.  The services they receive are minimal.  The food is rich in white flour and potatoes, noodles and potatoes are often served on the same paper dinner plate.  An independent, health-conscious and active woman into her late eighties, she fell and broke her hip and is now spending the rest of her life locked in this far from ideal Medicaid ward, a place she had no hand in choosing.  

Her one refuge was reading, but she can no longer see well enough to read.   After much exertion by Sekhnet and me, an eye exam was scheduled for her.  It took a few months but was finally done on March 25th.   She heard nothing further from anyone after the exam.  We followed up.  The head social worker responded that she would follow up to see what happened.  

When we followed up a second time we were treated to a long analysis of what a difficult, stuck up asshole our miserable friend is.  The question of her vision was never dealt with, except by another reference to following up with the medical department.   The social worker’s prose is appended at the bottom, read it for yourself.  She is a wonderful example of her type and very eloquent in expressing it.

This would seem to be a small evil, unless you are an old woman with no other options, kept against her will, in a Medicaid ward at a bare bones hospital on the Lower East Side.  I’d be within my rights, I suppose, to sarcastically thank the head social worker, who wrote to tell us she will no longer answer our emails since we misconstrue them and accuse her of writing things she never intended.  If you have the stomach for it, read her masterful prose poems below, judge for yourself.

I’d be within my rights, I suppose, to write, my toes still almost on the edge of the high road:  Hopefully you will never find yourself old and helpless and at the mercy of a merciless bureaucrat.   If you did, it would only be karma, and if that offends you, I deeply apologize for speaking the unflattering truth.

And cc the entire non-responsive correspondence to the director of the hospital, the hospital’s patient advocate (if any), the State Ombudsman, NYC Department for the Aging, the NYC Public Advocate’s office and anyone else who might give a rat’s ass or make this unaccountable corporate “social worker” have to defend her actions and non-actions.  

True, it seems like a lot of energy to spend, energy that might be better spent elsewhere, unless you consider the understandable despair of this abandoned old woman at the mercy of a system that clearly sees her only as a source of Medicaid payments.  Suppose she needs lasik surgery– that would probably come out of the Medicaid payments otherwise payable to the hospital for her maintenance.

The same way I find it impossible to forgive the unrepentant self-justifier, who, instead of acknowledging hurtful behavior, defends it with energetic hostility, anger at this type is still unavoidable to me.  The one thing to consider, in the case of this particular career bureaucrat gatekeeper, is if trying to hold her accountable will make things better or worse for our friend Margaret, locked up under the supervision of this creature.  

I would truly like the serenity to be able to stop thinking of galling, seemingly unresolvable, things like this, but they sit across my throat like sharp, jagged bones.  This is one of three or four such bones, crosswise in my craw right now, most related to the near impossibility of finding decent medical care at any price, and it is the only one I can theoretically do anything about at the moment.   Here the creature speaks for herself, in response to why there is still no report on the eye  exam, and then on why she will no longer answer our emails:

[1]  Ms. H_____ has rejected every attempt to have her involved in additional social situation.  She finds everything we offer beneath her.   Attempts to pair Ms. H______ with other residents (who have similar backgrounds and interest) to share stories and or for stimulation usually ends up with the other resident feeling bad about themselves because Ms. H_____ feels that they are not educated enough or somehow not smart enough for her.  I not sure what else the staff can do but continue to encourage Ms. H______ to engage and continue to invite her.

Getting Ms. H______ to attend her appointments is not without challenges.  She usually tells the staff that she will go later or tomorrow.  The staff reminds Ms. H_____ of the appointments in advance but still are faced with the stalling and delaying suggested by Ms. H_______ the day of the appointments.  The ophthalmologist has not indicated any need for eye glasses on his last consult 3/25/2017, I am asking for additional clarity as to why.  The team is aware of her upcoming appointment with the dentist on 4/20/17.

Ms. H______ is on the list to receive pet therapy, however pet therapy is a special event and not offered often.   I cannot tell you when the next pet visit will be at this time.  The recreation therapy department head is aware of the request and has assured me that Ms. H______ will be involved in the next pet visit.

her last email, which opens with a classic “if-pology”, if you are an asshole, I am truly, deeply sorry:

Good Morning

I apologize if that is how you and Ms. W______ have read into my email.   I was  stating facts of her behavior, I never blamed Ms. H_______.  Staff continues to encourage and support Ms. H_______ well-being.

Further updates to you and Ms. W______ will be done in person and with the team from now on.   I don’t want any further misunderstanding that emails often lead to.

I thank you for your response and continued support of Ms. H_____ and the Staff here at ______.

Oh, there will be no further misunderstandings, dear, none whatsoever.

Most of all, Elie, do what you love

It’s been a year since I began the manuscript I hope one day will be the book of my father’s life.  I think it’s time to try to summarize the main story line, as I would before a Moth story audience. 

My father always insisted that, on a fundamental level, people cannot change.  It was an insistence both tragic and maddening, even as I can now see the kernel of truth there.  This belief was a self-fulfilling prophecy, as they say.  We argued about it over the years, as I changed, as he remained stubborn in his insistence that the only change one can hope for is on the most superficial level.  

It was one of his favorite themes, dismissing all hope that things could ever be different, no matter how much one changed one’s actions and reactions. His life had taught him harsh lessons it was his sad duty to impart to my sister and me.  He was dogged about removing the illusion that one might evolve past one’s genetic predispositions and childhood difficulties.  

On the other hand, he always insisted that childhood injury had nothing to do with a mature responsible adult’s life.  You take responsibility for your own life, and your own happiness, and you don’t blame your parents, or whatever bad luck may have led them to be less than the parents you might have hoped for.  This duty apparently started, for a young man, around the age of eight or so, when it was past time to stop acting like a child and time to start behaving like a goddamn man, for fuck’s sake.   

This much out of context generalized detail and emotional nuance, of course, would be hacked through by a director from the Moth, who would keep urging me to get back to the essence of the story.  Make it simple, it’s a story, people have to be able to follow it from start to finish.

My father was an idealist, extremely bright, well-read, quick-witted and funny as hell.   He was also, sadly for my sister and me, a man crushed by a brutal childhood who could not help replicating the cruelty that sometimes flows from such terrible childhoods.  

“You can’t blame your childhood, or your parents, or bad luck, you have to take responsibility for your own life,” he always insisted.   At the same time, he also insisted a person could not change on any fundamental level– what you were at five you would be a fifty.   Even as a child this struck me as an idiotic and self-defeating idea.   We argued about it, me a child, my father a grown man.  Later as two adults we continued to wrangle over this issue.  

“I’ve seen a tremendous change in you,” my mother once observed to me during a discussion my father and I were trying to keep civil, about the difficulty of change.

“Well, you can change certain things, on a superficial level,” my father yielded, “but the baked-in responses, those genetic traits hardened by experience, the reflexes you are born with, things like a bad temper, which you have, no matter how you try to conceal it with your lofty vows to remain mild and so forth, remain.  You cannot change on a fundamental level, certain things will continue to enrage you if you are wired that way, you can only change the surface aspects of your personality.”  

I told him that if anger was a problem in life, in our relationship, and I learned to control it enough to maintain a dialogue instead of being drawn into a fight, that was a significant change.  

“Superficial,” he said, dismissing any benefit not reacting with anger could have for anybody.  “Deep down, you’re still mad as hell, boiling mad, like you were when you were a baby, and at five and as a teenager.”  

I finally saw the futility of having this argument with my father.  He was very smart, and very skilled at the art of verbal war.  He was always armed and dangerous.  There came a point when his desperation to be right at any cost became clear to me.  

Paint that specific moment in the den in Coconut Creek,  hand-delivering that third copy of the heartfelt letter he kept denying he’d read, month after month.  

“Oh, that letter,” he said with the casual nonchalance of a charismatic psychopath,  “yeah, I read that letter.”  

He paused to fix me with a look and then said ” you have to respect my right not to respond.”  

The hideous, specific flavorful details are needed for a reader to grasp the full exact truth this story is tying to convey.

I realized at last that there was no benefit to arguing against something he would defend to the death, no matter how mutually destructive that thing was.  

I believe we can change things about ourselves if we are miserable enough about the thing that needs to be changed, determined enough to do better.  I have seen changes in myself and in old friends.  They are the result of long, hard work and such changes are always works in progress, but I see the changes and their benefits.  I can also see my father’s point of view– restraining the impulse to be enraged is not the same as no longer feeling anger.  Even though learning to restrain and tame the impulse is the first step to a less enraged, contentious life.  

Whatever the case about changing oneself, it is 100% certain that one cannot change anyone else, and so in the end I realized that my poor father was a lost cause and that arguing with him was only throwing fuel on a fire that should not have been burning in the first place.    

Not to say I stopped chewing on the perplexing riddle of what made this anti-racist, friend of the underdog, funny, humane, otherwise very smart, hip and likable man such a brutal dick.  I spent many hours with my father’s first cousin, Eli, an old man living in a little retirement cottage about an hour north of me.  I’d drive up the long, twisty parkway to listen to stories about our family and my father’s unimaginably awful childhood.  

Eli loved my father in a way he couldn’t love his own children, to whom he was often quite brutal and from whom he was mostly estranged.  My father loved Eli, who was 17 years older, as much as he feared him.  Eli was a warm, generous, very funny man capable of great savagery when angry, which was often.  There was no doubt of their mutual love and there was no doubt of Eli’s genuine desire to give me insight I could use to understand my destructive old man and get along better with him.  It was through Eli that I finally got helpful insight into my father’s tragic life.

Predictably, my father was defensive and angry when I reported the fascinating conversations I was having with Eli.  

“Eli’s full of shit!” he said with great conviction, “he has his own twisted version of history.  Yeah, listen to Eli, he’s a great historian, did he tell you how many times he would have become a millionaire if some asshole hadn’t screwed him?  Ask his kids about him, what a loving soul he is– Eli has never been wrong about anything, he’s always the victim, always the righteous man wronged by vicious assholes, even when he’s smacking his kids around…”  He went on in this vein for quite some time.

This reaction did not surprise me.  After all, it was a yelp of pain.  It made sense to me now, in the context Eli had imparted to me, quietly and deeply aware of the full pain and horror of what he was telling me.   Eli’s beloved aunt was my father’s mother Chava.  Eli witnessed Chava’s violent rages many times including when she turned them on her infant son, from the time he could stand.  

“She had a drawer next to where she sat at the kitchen table where she kept the cord to her iron.  You remember those old cloth wrapped electrical cords they used to have?  Heavy cords, with a rough burlap kind of wrapping.  She would reach into the drawer, grab that heavy cord and whip little Irv across the face with it.  I saw this myself.  After a while all she had to do was rattle the drawer and he would stand like this,” and Eli did one of his uncanny imitations, a terrified child, rigid and shaking, eyes cast to the ground.  

This image was like a light going on in a darkened room.  I was flooded with sympathy for the poor bastard even as I knew that my father would kill us both before he’d ever talk about something this painful.  He was simply incapable of it, I realized thinking about his life from the perspective of a face-whipped infant.  It explained many things I could never understand.    

The last few years of his life, as my father was becoming greyer and weaker, hollowed out by the undiagnosed liver cancer that finally killed him, I pretty much abided by his wish to stick to superficial conversation.   We could talk about politics, a subject we were largely in agreement about, or history, something that fascinated both of us, but most of the deeper conversations were out of bounds and I stopped trying to have them.  Predictably, in a story like this, I got a life-changing phone call during dinner with old friends.  

We were gathered around a table to retell a story my father had told us every year, about the spiritual journey from slavery to freedom that our ancient ancestors had undergone.  In every generation we must learn this lesson anew– because we were strangers harshly mistreated in a foreign land we must never tolerate the mistreatment of anyone, if we have the power to oppose it.  

“The D.U. is in the hospital,” my sister told me.  “The E.R. doctor knew within two minutes that he was examining a dead man, he touched his swollen stomach, looked at me and said if your brother wants to see him, tell him to get down here right away.”  

There were two doctors around the table who gently reassured me that ascites, the accumulation of liquid that gathers around the organs at the end stage of something like liver cancer, could result from several different things (all pretty much deadly, as I soon learned), and that I should go visit my father and not assume the worst until I talked to his doctors.  I was on a plane soon after.  

I drove to the hospital at around 1 a.m. on what turned out to be the last night of my father’s life.  He was ready to have the conversation he’d never had the courage to attempt.

“You know those conversations you had with Eli, he pretty much hit the nail right on the head, although he probably spared you the worst of it.  My life was over by the time I was two years old,” he began.  “I felt you reaching out to me many times over the years, and it’s my fault I was too fucked up to respond to you like a human being instead of a belligerent asshole.”

The book of my father starts with this conversation and imagines what we would have shared if he had not died the next day at sunset.   I have been in regular dialogue with his skeleton for the last ten months or so and am happy to report our communication is now excellent.

Thank you.

 (imaginary applause)

Rewrite of To Whom it May Go Fuck Yourself

I came to realize the previous draft was lacking in at least two ways.  It was focused on the mind-fucking Patient Protection and Affordable Charismatic Presidential Candidate Legacy Enhancement Act, for one thing.  The focus on the soon-to-be repealed PPACA gave the whole letter a sour overlay of mootness.  

Equally important, the letter as written probably wouldn’t have inspired the A.G. to take any action and didn’t set forth the specific action I was seeking.   This one, I think, does better in those areas.

Here’s the rewrite, which is about as good as I can get it at the moment,  After I post it I will go back to gnawing at my ankle:

January 4, 2017

Office of the Attorney General
The Capitol
Albany, NY 12224-0341

Honorable Attorney General Schneiderman,

I’m writing to alert you to a massive consumer protection failure in New York State and to encourage you to take action.   There is no New York State agency where a citizen can pursue a claim of fraudulent denial of medical service against a health insurance company.

The need for state oversight is more important now than ever, with an incoming administration committed to dismantling government regulation in many areas.

I’ve admired the courageous and proactive steps your office has taken against the perpetrators of various frauds and urge you to consider this letter in the context of systemic healthcare-related fraud against a large class of vulnerable low-income and senior citizens of New York State.

Uncertainty about health care, lack of information about costs and the routine denial of medical services without explanation are all stressful. They negatively affect the health and quality of life of those mandated to participate in income-based “bronze” level health insurance plans in New York State.   As detailed below, NYS health insurance buyers are denied any protection against the practices of private health insurance companies, even when the denial of necessary service appears to be utterly fraudulent.    

This consumer protection emergency transcends the current health care scheme under the Patient Protection and Affordable Care Act (“PPACA”).   The president-elect’s threatened repeal of the PPACA makes it all the more essential for New York State to regulate private insurance companies.   The replacement for the PPACA, whatever it might be, will not eliminate the need for protection of vulnerable older and low-income consumers, the need will likely become even more pronounced.

 In googling your mailing address to mail this letter I came across the New York State Health Care Bureau, a couple of layers down on your office’s website. While that office no doubt provides a welcome shoulder to cry on, the citizens of New York State sorely need a regulatory apparatus that can make timely and binding determinations on when insurance companies cross the line into actual fraud against their mandated customers.  

 Of course, the creation of a regulatory agency is a matter for the legislature. A fraud investigation by your office into practices such as the ones described below would highlight the need for state regulation, and give momentum to the legislative process.  

As stated above, defrauded health insurance consumers (patients) in New York State have no forum where complaints can be resolved, outside of the NYS Department of Financial Services, which, it turns out, does not hear such complaints.

The fraud investigator there could not find a word other than fraud to describe the facts I set forth, but urged me to call the NY State Department of Financial Services Consumer Services Hotline. He assured me that they were the specialists in the area of health insurance. The recorded menu at the hotline, which I recognized from my first call many hours earlier, offers no option for resolving issues with insurance companies of any kind.  

On my original call to the Department of Financial Services, a long wait to speak to a representative yielded the number of the proper federal agency to contact.   Calls to the U.S Department of Health and Human Services are robotically routed to a NY State number that is, sadly, the office of Temporary and Disability Assistance, where some helpful party connects you to a fraud hotline, which turns out to be at the office of the Medicaid Inspector General, where the office of legal affairs is also sympathetic, but unable to help, and so forth.

 As for the PPACA, I understand that it was drafted by Liz Fowler, a career health industry insider who went on to a senior executive position with Johnson & Johnson immediately after her work on the PPACA was done. I‘ve witnessed the many attempts to repeal the law and thwart its implementation, rather than fix any of its original flaws, as most other complicated laws are tweaked and improved over time. Even so, the lack of any provision for oversight of corporations participating in the PPACA by New York State is grotesque. To a sixty year-old cardiac patient unable to see a cardiologist now for many months, the lack of oversight may also be deadly.

Although the situation I’m complaining of is personal and extremely aggravating, it is sadly typical. I’ve commiserated with many others who suffer under similar insurance coverage.  Erroneous bills are a common, if relatively innocuous, theme.

I receive bills that there is no way to resolve, most recently an invoice for $1,324 for a fully covered sonogram I had in August. The x-ray and kidney sonogram I also had that day were fully covered, the sonogram of another body part was not.   The billing issue was resolved with the insurance company (Empire Blue Cross) and the provider to a zero balance in October. Two months later, the full bill for $1,342 was sent to me again in a Third Notice.  

Nobody at Empire could give me the reason the provider had sent that bill, although the representative, who checked my account and called the provider again, informed me that, this time, it was my responsibility to pay it in full.   She offered to send a consumer handbook for my plan that would fully explain the reason, which she claimed was clearly set forth there, though she could not state it.

There is nobody in New York State to adjudicate this billing matter, outside of a judge on some court one must file an actual lawsuit to appear before, assuming one could find a cause of action.

Empire recently sent me an email warning of termination of my insurance for non-payment of December’s premium two weeks after their email confirmation of my payment for December and January.

More ominously, a patient can be denied medical service without explanation (site-specific provider NPI numbers and proper CPT pre-authorization codes notwithstanding), and there is nobody in New York State you can appeal to, except to the company itself.   Empire Blue Cross “Health Plus” recently sent me to two providers for needed medical services, a cardiologist and a physical therapy facility. Neither provided me with any service. 

I received the site-specific NPI number for the cardiologist, scanned and emailed the back and front of my insurance card, got pre-approval from his office. The consultation was halted ten minutes in and I was informed that my insurance would not cover the visit.   When I arrived at the nearby ‘physical therapy facility’ Empire had referred me to, it was a nursing home.  The director told me the facility offers PT, but only to residents.

The circuit of government agencies I have contacted in vain came full circle with the “consumer help line” the NYS Department of Financial Services Fraud Unit investigator had me call, which I immediately recognized as the very first number I’d called.   Here is a summary of that cul du sac:

NYS Department of Financial Services referred me initially to the US Dept of Health and Human Services which, supposedly, connected me to NYS Health and Human Services, although to an incorrect branch of that agency, the pertinent branch apparently having been merged into the NYS Department of Financial Services which took over all functions of the former NYS Insurance Department as well as oversight of banking and several other discrete* and seemingly unrelated areas.  

The NYS Department of Financial Services, one learns, has sole responsibility for oversight of health insurance companies, as well as all fraud investigations related to consumer fraud against insurance companies, and complaints about the practices of banks and brokers.   Everything but, according to John Marconi, a fraud investigator for the Department of Financial Services, investigations of colorable fraud committed by insurance companies against mandated health-care “consumers” in New York State.

My political and legal conclusions are beside the point. Whatever the reasons, the fact remains that in New York State in 2017, even under the PPACA, citizens whose health is menaced by private insurance company denials are denied any legal process to have these vexing, sometimes life-threatening situations resolved.  

Outside of a possible Article 78 (which government agency would you sue for relief, the Department of Financial Services?) or a class action under a private attorney general or qui tam statute, what is a patient trying to get an appointment to see a cardiologist since August to do under the Patient Protection Act in New York State?   At minimum an ombudsperson, or a few hundred of them, would be a good start.

As I stated above, I’ve followed your career from the start and have admired your principled engagement in the fight against injustice.   To have a legal right that cannot be enforced is to have no legal right.   While certain widespread injustice is accounted by some as a kind of ‘externality’, the lack of legal recourse for denial of purchased health care must not be allowed to stand in New York State.

I will be glad to do what I can to help your office take the first steps towards sorely needed due process for denial of health care for some of the State’s most vulnerable citizens.  I am open to being a plaintiff in any lawsuit the State might want to bring and to testifying in any proceeding.   I look forward to hearing from your office and stand ready to give any other details or assistance your office might require.

 Yours sincerely,

 B.B. Rebozo

 * teachable moment!  The previous draft had idiotically read “discreet”, an error imperceptible to homophone-deaf smell check

discreet:  having or showing discernment or good judgment in conduct and especially in speech :  prudent; especially :  capable of preserving prudent silence

discrete: separate

 

Letter to Whom It May Go Fuck Yourself

Office of the Attorney General
The Capitol
Albany, NY 12224-0341

Honorable Attorney General Schneiderman:

I am writing to enlist your efforts to remedy the lack of state oversight of health insurance companies under the Patient Protection and Affordable Care Act (“PPACA”).

I have admired the courageous and proactive steps your office has taken against the perpetrators of various frauds and urge you to consider this letter in the context of systemic healthcare-related fraud against a large class of vulnerable citizens of New York State.

Defrauded health insurance consumers in New York State have no forum where complaints can be resolved, outside of the NYS Department of Financial Services, which, it turns out, does not hear such complaints.

 The fraud department investigator there could not find a word other than fraud to describe what I detailed, but urged me to call the NY State Department of Financial Services Consumer Services Hotline. He assured me that they were the specialists in this area. The answering machine at the hotline, which I recognized from my first call, offers no option for resolving issues with health insurance companies regulated by the ACA, or otherwise.

 On my original call, a long wait to speak to a representative yielded the number of the proper federal agency to contact.   Calls to the U.S Department of Health and Human Services are robotically routed to a NY State number that is, sadly, the office of Temporary and Disability Assistance, where some helpful party connects you to a fraud hotline, which turns out to be at the office of the Medicaid Inspector General, where the office of legal affairs is also sympathetic, but unable to help, and so forth.

 I understand that the PPACA was drafted by Liz Fowler, a career health industry insider who went on to an executive position with Johnson & Johnson immediately after her work on the PPACA was done. I have witnessed the many attempts to repeal the law, rather than fix any of its original flaws, as most other complicated laws are tweaked and improved over time. Even so, the lack of any provision for oversight of ACA programs by New York State is grotesque. As a cardiac patient unable to see a cardiologist now for many months, the lack of oversight may also be deadly.

Although the situation I’m complaining of is personal and extremely aggravating, it is typical.  I’ve commiserated with others who suffer under similar insurance coverage. Erroneous bills are a common, if relatively innocuous, theme.

I receive bills that there is no way to resolve, most recently an invoice for $1,324 for a fully covered sonogram I had in August. It was resolved with the insurance company (Empire) and the provider to a zero balance in October. Two months later, the full bill for $1,342 was sent to me again in a Third Notice.   Nobody at Empire could give me the reason the provider had sent that bill, although the representative, who checked my account and called the provider again, informed me that, this time, it was my responsibility to pay it in full.  

Empire recently sent me an email warning of termination of my insurance for non-payment of December’s premium two weeks after their email confirmation of my payment for December and January.

More ominously, you can be denied medical service without explanation (provider NPI numbers and CPT codes notwithstanding), and there is nobody in New York State you can appeal to, except to the company itself.  Empire Blue Cross “Health Plus” recently sent me to two providers for needed medical services, a cardiologist and a physical therapy facility. Neither provided me with any service. 

I received the site-specific NPI number for the cardiologist, scanned and emailed the back and front of my insurance card, got pre-approval from his office. The consultation was halted ten minutes in and I was informed that my insurance would not cover the visit.   When I arrived at the nearby ‘physical therapy facility’ Empire had referred me to, it was a nursing home. They offer PT, but only to residents.

The circuit of government agencies I have contacted in vain came full circle with the “consumer help line” the NYS Department of Financial Services Fraud Unit investigator had me call, which I immediately recognized as the very first number I’d called.   Here is a summary of that cul du sac:

NYS Department of Financial Services referred me initially to the US Dept of Health and Human Services which connected me to NYS Health and Human Services, although an incorrect branch of that agency, the pertinent branch apparently having been merged into the NYS Department of Financial Services which took over all functions of the former NYS Insurance Department, as well as the NYS Banking Department.

The NYS Department of Financial services, it appears, conducts all oversight of health insurance, as well as all fraud investigations related to consumer fraud against insurance companies, and complaints about the practices of banks and brokers. Everything but, according to John Marconi, a fraud investigator there, apparent fraud committed by insurance companies against mandated health-care “consumers” in New York State.

My political and legal conclusions are beside the point. Whatever the reasons, the fact remains that in New York State in 2017, even under the PPACA, citizens whose health is menaced by private insurance company denials have no redress.  

Outside of a possible Article 78 (which government agency would you sue for relief?  The Department of Financial Services?) or a class action under a private attorney general or qui tam statute, what is a patient trying to get an appointment to see a cardiologist since August to do under the Patient Protection Act in New York State?   At minimum an ombudsperson, or a few hundred of them, would be a good start.

As I stated above, I’ve followed your career from the start and have admired your principled engagement in the fight against injustice.   To have a legal right that cannot be enforced is to have no legal right.   While certain injustice is accounted “the price of freedom”, the lack of legal recourse for denial of health care must not be allowed to stand in New York State.

I look forward to hearing from your office and stand ready to give any other details needed.

 Yours sincerely,

A. Schicklegruber