Category Archives: musing

What a mensch would do

There are few far too few mensches in the world, unfortunately.  A mensch will go out of his or her way to do the right thing.   A mensch listens to the whole story before putting their two cents in.  A mensch is patient, gives the benefit of the doubt.  A mensch is fair, and humble and doesn’t take advantage of people.  A mensch will not fight unless there is no reasonable alternative.  Like I say, mensches are rare, sadly.   Much more prevalent, particularly in a competitive, hierarchic, materialistic society like ours, are the dickheads, douchebags and motherfuckers, the winners who wake up every day ready to kick some ass.   Just look at the front page of any newspaper, you will see photos of an impressive collection of these types.  It is rare to see a mensch as a captain of industry or in any position of great power.

I mention the lack of mensches, and Hillel’s idea that in a land where there are no mensches, it is even more important to act like a mensch, as a backdrop to the following story.  If there was a mensch involved in the medical office I am going to describe, they could have done things much differently, much better, in a much more healthy way for all involved, particularly the patient. 

I was diagnosed with a serious kidney disease during the annual renewal period for Obamacare.   In light of this diagnosis, I decided to change insurance, pay many times more than I paid in 2016, in hopes of getting better medical coverage than I had last year.   The results have been mixed, though I am paying, literally, more than ten times what I paid last year for health insurance.  It’s an irrelevant detail for purposes of the following story, though, it annoys the shit out of me, so I mention it.    

In April, having been diagnosed with this disease four months earlier, I visited a nephrologist I’d contacted off a list given to me by a friend, who got the list from an acquaintance at a hospital.  This nephrologist had been the second or third I called, the first, I remember, only dealt with end-stage kidney patients, and I hopefully have a few years to go before that.  

The doctor seemed bright and personable.  I liked her.  The doctor had a hammer.   The only thing, she told me, that medical science has to cure my disease is immunosuppressive therapy, which comes in six month, twelve month and single injection form (though insurance doesn’t cover the very expensive one shot deal).  Some people, she assured me, have very mild side effects from the back to back to back infusions of steroids and the other chemicals designed to temporarily shut down the body’s ability to fight disease.  

They control for the suppressed immune system, inoculate you against the worst diseases you’re likely to get when the body’s natural defenses are suppressed.   For some reason, I was uncomfortable with this, particularly when the doctor explained it as an atom bomb or shotgun approach that temporarily takes out the whole broken immune system and, more often than not, fixes the problem when the system comes back on line.  A cure percentage was not available to the doctor.  When pressed she said it was closer to 50% than to 90%.   

My disease is idiopathic, which means the cause is unknown.   I needed more information.  I’d heard, for example, and the nephrologist confirmed, that 1/3 of patients who get this idiopathic disease have a spontaneous remission within the first year or two.  The disease, in other words, disappears by itself, as unexplainably as it appeared.

 The doctor, having only a hammer, told me I was wasting my time trying to get answers to all these questions and that hoping for remission was a crap shoot that could do permanent damage to my kidneys.   I was hung up on the fact that the disease was idiopathic, she said.  She tried to convince me that it was not idiopathic, because they knew so much about its progression and how to cure it.  She described the cure again, in great detail.  

At the end of her long presentation about her hammer I told her that since science doesn’t know what causes this membrane to grow on the filters of the kidney that, whatever they knew about a way to cure it sometimes, by definition the disease was still idiopathic.  She didn’t like the way I’d seemingly ignored her presentation of the cure.    

The doctor retested me, five or six weeks after our first meeting.  The test would confirm what the January and April tests had– I have a blood marker, some kind of antigen or something that comes up 99.9% in patients with my kidney disease, and only in the blood work of such patients.  

Still, though the test might well show that the disease was still progressing (and the retest would show it was),  I hesitated to commit to six months of immunosuppressive therapy, which she was urging me to start immediately. We had another discussion during that second visit, virtually identical to the first.   She dismissed the idea that diet, exercise, life-style changes could have any effect on the disease or improve my chances of remission without the chemotherapy.  She told me I’d be wasting time and money going to see a nutritionist or naturopath.   She had no studies to point me to.   At this point, realizing this was all she knew, and that my many questions could never be answered by her,  I probably should have thanked her and gone to see another doctor.  

Instead, I allowed her to convince me to have a kidney biopsy.   She explained to me in detail that a biopsy is the only way to know how long I’ve had the disease.  In an early stage, the tissue sample will show tiny dots, like pinpricks, of membrane.  As the disease progresses these dots become larger and larger and begin to grow on top of each other.  Eventually, toward the stage where you begin to have serious decrease in kidney function and are headed toward dialysis or a kidney transplant, the membrane is a thick coating over the nephrons.  By staging the disease, she told me, we would know exactly how urgent it was for me to begin immunosuppressive therapy, medical science’s only present treatment.  She sent me downstairs to the lab to retest my blood and urine.

A few days before the biopsy I had a call from the lab.  The doctor had neglected to check the box to have the coagulation of my blood tested, along with the other tests.  This coagulation test was needed before any biopsy.  I made an appointment and went back to the lab I’d been to a few days earlier.  A few days after that I managed to avoid a $2,100 charge to my credit card, demanded of me the afternoon before the biopsy,  prior to the biopsy.  I avoided this charge, though my final “out of pocket” responsibility for the biopsy is well over a thousand dollars.  

It turns out the biopsy cannot tell you how long you’ve had the disease, not with any precision at all.  The biopsy is, however, necessary protocol before the immunosuppressive therapy can begin.   The doctor told me I’d misunderstood, had unreasonable expectations, was very smart but had too many questions.  I resisted telling her she was acting like a fucking bitch, but we did argue.  We argued again the next time we spoke.  She told me again that I was being unreasonable.  

Being a lawyer, by training, I began to make a record.  I sent her a message that laid out part of my case, her repeated failure to return calls to give me test results, promises she simply didn’t keep.  She called me and struck a very defensive pose, which is to be expected.  She explained that she works at four different sites and rarely has a chance to check email or messages.  For my part, I was frightened and angry and not acting like a mensch, though my words in the text were very measured and I mostly kept my patience as she justified herself and explained why I was wrong.  I made my points.  The relationship between doctor and patient was now toxic and adversarial.  

She began to offer the conditional apologies Harry Shearer has helpfully styled “if-pologies”.  If you feel that I misled you about the biopsy, then I am sorry.  If you were hurt that I never responded to multiple messages and calls to my office to give you test results and that increased your anxiety, then I am sorry.  If your anxiety was increased by misunderstandings or miscommunications, then I am sorry.  I corrected her each time as to the form of these non-apologies, but it was a very wearying exercise.

After a few more defensive, blame-shifting ifpologies, I felt ready to punch her out.  I managed to summon the last of my cool, thanked her for calling, told her I was sure she was a very nice person but that I had to get off the phone.  My head was ready to explode, but I felt I had done pretty well under the circumstances.    

A few hours later, early Friday evening, when I’d finally calmed down, I had another call from the doctor.  She told me how upset our previous call had made her, how much I’d hurt her feelings by calling her a malicious person, etc.  I suppose one could call this playing the woman card.  It worked a little bit, I explained quietly that I had never called her malicious nor did I believe she was a malicious person.  Overworked, defensive, a bit dismissive and argumentative perhaps, but not malicious.  I told her I believe she is a good doctor.  It was truly a pointless call, although hopefully it made her feel a little better.  Her “unconditional apology” at the end was meaningless.

I went online and cancelled the appointment the doctor had made for me, without consulting me, on the Friday before my birthday.   During this appointment we would presumably discuss the biopsy and set up the immunosuppressive therapy. I’d already told her I was unavailable that day, but it was, in her words, another misunderstanding.  

I sent a message asking her to send my biopsy report to my general practitioner.  When I heard nothing back I followed up 24 hours later with a call to the Patient Advocate and was promised they would send it right away.   My doctor read the biopsy report and confirmed there was nothing conclusive about staging, though it did show very little scarring to the nephrons, indicating it had not yet progressed to the point it was doing any permanent kidney damage.  

Sekhnet got me a referral to a very experienced nephrologist from her beloved doctor of more than 40 years.  We highly value this wonderful doctor’s advice and I was looking forward to a second opinion from a nephrologist who could answer some of my questions and refer me to recent research on the efficacy of the treatment I was being pressured into beginning right away.  I want to make a fully informed decision before allowing them to pump steroids into my veins the first three days of every other month, while I sit with other chemotherapy patients.  

My bills for two visits to this nephrologist, blood and urine tests, and the biopsy are close to $2,000.  Good news for me, in a way, because once I rack up $2,000 out-of-pocket my insurance will kick in and begin to pay part of my future medical bills.  When I mentioned the expense to the nephrologist she told me she had nothing to do with the billing, had no idea an initial visit to her was billed at $860.  I made some snide comment about corporate medicine and she promised to look into getting me some reduction on my bill.  It was a promise made in good faith, and, naturally, never followed up.

Anyway, to the issue of menschlichkeit I promised at the top.   When I called to make an appointment with the new, highly recommended nephrologist I was told that, since he was, as luck would have it, in the same practice group as the first nephrologist, that the two doctors would have to agree that I could see the highly recommended one, since I’d already been a patient of the first.  The mentor, I was told, had to have permission from his protégé and would have to agree to see me.   I wrote to the first nephrologist asking her to expedite the switch so that I could continue my treatment.  The following day she wrote back:  I have instructed my front desk staff.  That was on June 22, almost a month after the kidney biopsy.   

Each time I called after that to make the appointment I was told I’d need to be called back.  Each time I received no call back.  On July 13 I finally had a call from the office manager, only two days after the most recently promised call back.  She told me it was an apparently inviolable office policy, that no doctor in the practice group would see anyone who had seen another doctor in the group, under any circumstances.  

She brushed off my comments about the unethical three week wait to deliver this news, if the policy was indeed inviolable the first time I called, while I’d been trying in the meantime to make an appointment and being told each time that the doctors hadn’t yet discussed it.  She offered to refer me to other nephrologists outside the group, and wished me the best of luck.  I resisted telling her to fuck herself as I said goodbye.

My reaction was rage.  I wrote a letter accusing the doctor I’d been referred to of being unethical.  I figured to run it up the food chain at the corporation he worked at, pressure him into doing the right thing.  It was a stupid idea, although my doctor endorsed it, in fact, recommended it.  I was talked out of  sending the letter.  

I thought of the belligerent retarded man I’d represented years earlier in Housing Court.  He stood on his right to smoke crack, play loud music and bring prostitutes to the room in the nursing home he’d inherited a right to when his mother, who he apparently helped care for, died.   He was angry every time we were in court, left me angry phone messages, sometimes several in a row, between court appearances.  When I finally settled his case, with no admission of wrongdoing on his part, and preventing his eviction, the judge congratulated me.  

A few days later I had a complaint forwarded to me by the First Department’s Attorney Disciplinary Committee.  The letter gave me two weeks to respond in full to the charges or face a disciplinary hearing and possible sanctions including the suspension of my license to practice law.   I read the complaint thoroughly.   It had my name spelled right.  My office address was given as the Bronx Housing Court.  The box for the complaint was entirely blank.  I spent four hours composing the letter defending my professional name against a blank complaint.  I eventually had a letter back from the First Department dismissing the blank complaint against me.  

I figured there has to be a similar procedure to make a complaint against an unethical doctor.  I have no idea if there is.  And anyway, I was urged, more important for me, as a man with a serious kidney disease, to find a new nephrologist in the phonebook than to fight these unaccountable, defensive, reflexively united, never at fault pricks.  

Here’s where somebody being a mensch comes in.  If the original nephrologist was a mensch she could easily have reached out to me by phone or message.  She could acknowledge that things were not going smoothly between us and persuade her colleague to see me, even if only for a single second opinion visit. To her mind, this would be an admission of defeat, of having proceeded badly with a patient.  She has established that she is not much of a mensch.   Like I say, the mensch is a rarity.

What of the doctor highly recommended by his older, highly respected mensch colleague?  How difficult would it have been for him, out of respect for this colleague, if for no other reason, to have contacted me and asked me what the problem was?  

Too much trouble, much easier to have the office manager call me back, after weeks of misleading delay, and wish me luck with some new doctors.  I researched this senior nephrologist online and found only one comment about him from a patient.  According to the comment he did not return calls, did not provide answers to patient questions, was abrupt and dismissive.  How well he has trained his protégé!  

It is rare to find a mensch.   For years doctors routinely removed the breasts of countless women who came to them with early signs of breast cancer.  It was standard procedure at the best cancer hospitals at one time, a radical mastectomy.   It is no longer standard procedure, thankfully, as advances in science, more women in the medical field and a greater recognition of the importance of treating the entire patient, feelings included, emerge.  

In the meantime, I’m determined to have a very nice day, and to go fuck off for a while, before I compose the original letter I should have written to this apparent douchebag of a senior nephrologist.  On the off-chance, you know, that he was recommended to me by a mensch because he himself, in some hidden region of his non-reptile brain, has the repressed spark of acting like a mensch.  In any case, that unanswered letter will be a better one to send to the medical ethics committee, if such a thing exists, than either of the two previous attempts at a letter.

Take it like a man, Madam

Years ago, as a disaffected undergrad at City College in Harlem, I enrolled in a course in the Women’s Studies department.   This was around 1979 and I was the only male in the small seminar course.  The professor was a brilliant woman named Joan Kelly-Gadol.   I remember her referring to a movie or a book by the title above.  The clever and evocative phrase stuck with me, apparently.  

As a side note, Joan Kelly (who, Wikipedia informs us, began teaching at CCNY in 1956, the year of my birth) died young, of cancer while I was still a student at City College.  She was a historian and the college instituted a prize named for her, to be given annually for best research paper by an undergrad in an elective history course.  I may have been the school’s first Joan Kelly Prize recipient when my history professor, the equally brilliant Walter Struve, submitted my paper on The Nazis vs. Degenerate Art on my behalf.  I realize now I was probably the first winner, since the prize was awarded in 1982, the year of her untimely death, and my last year at City College.

“Take it like a man, Madam,” says the overbearing person doing something that should not be done.    

“Should is not a word one should use,” stresses the overbearing person. “What you should do instead of sanctimoniously invoking morals and ethics, those two amorphous, infinitely flexible man-made constructs, is shut the fuck up and take it like a man, Madam.”  

Words to the wise:  take it like a man, madam, whatever it is.  Whimpering only makes it more humiliating.  If you have lived in this world any significant length of time, you will know exactly what I’m talking about.

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)

Plain Language

When I went to law school, more than twenty years ago, there was a big emphasis on plain language.  Lawyers should write as plainly and clearly as possible.  In the old days, we were told, scriveners, who wrote legal papers for lawyers, were paid by the word and so they laid the words on with a trowel.  This practice led to unplain, exceedingly excessive language, writhing, modifier-laden legalese, language embellished, decorated, complicated and modified, as needed, or sometimes not, according to long custom, by a dozen redundant, recursive, tautologous synonyms encompassing a dozen finely calibrated shades of meaning, foreshadowing, portent, legal significance, modified ambiguity, standard boiler-plate ambiguity, ambiguousness intended and incidental, anything to the contrary notwithstanding.   Reading legalese is generally a huge pain in the ass– take a glance at our Constitution or any on-line contract you must accept before getting web-based services.   “Plain language!” we were told, “the law now requires anything a consumer will be bound by to be written in plain language.”

 That was some precatory, aspirational, academic shit, apparently.  We were also taught to use the female pronoun instead of him and his when speaking of general things.   It was a fairly liberal school, I suppose, even though it had its share of rigid sociopaths on the faculty.   There are, I need not point out, rigid sociopaths on every shade of the political spectrum.    

I am thinking about this because I just got a determination from the New York State of Health appeals unit.  It is seven pages of fairly spare legalese that concludes with the determination that NYSOH must rescind its notice of January 9, 2017 and reconsider my case in accordance with the law.   It does not say, anywhere in its learned pages, anything that someone without a background in the law can understand as a clear, five and a half month belated, reversal of NYSOH’s clear error.   An error, moreover (to use a word beloved of scriveners everywhere) that anyone on the NYSOH website can verify in less than five seconds.  

It was only a four and a half month wait for the appeal and then, a speedy 30 days for the determination to be written up and sent out.  I have only been required to loan a large corporation about $1,250 in that time and I am told it will come back to me some time next year when I file my taxes, since I was entitled to what the decision refers to as the APTC, payable on my behalf towards the monthly premium of the QHP.  The subsidy, in other words.    

Rigid sociopaths are currently dickering about the quickest way to dismantle the conservative think tank-born, health care industry-friendly health insurance plan that bears the hated secret Muslim president’s name.  These are some dangerous, cynical, amoral motherfuckers doing this dickering.   Obamacare is bad in many ways, very bad in some ways, but it is a step forward, although not necessarily in the absolutely right direction since it leaves ravenous foxes to supervise the hen house.  The plan these dickheads are trying to push through will be a disaster for millions.  It has a 12% approval rating among the citizens of this nation of poor bastards, which is why it was initially kept secret and why its advocates are refusing to allow public debate on the punitive details of the new bill.

The Republican plan, in fairness to them, while hurting the poor and lower middle class, will greatly benefit the rich.  Who can blame the rich for trying to get richer?  It’s only natural.  

Like trying to repeal the hated DEATH TAX, another long time dream of America’s greediest.  Check this number out– I don’t know why it is not more widely known.  The so-called DEATH TAX affects the top 0.2% of our great, gullible, lynch-mob republic.   For those of you not good in math, that’s 2 estates out of every 1,000.   I don’t know about you, but that number of people affected by the so-called DEATH TAX, the top 2% of the top 1%, gives me goose bumps.   

Have a groovy fucking day, y’all.

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!

 

 

 

“Murphy!” and Frederick Douglass on American Exceptionalism

Whenever I say something like “well, at least the traffic is mercifully light,” Sekhnet will pipe up with a curt, cautionary “Murphy!”   This is the Murphy of Murphy’s Law:  Anything that can go wrong, will– and usually at the worst possible moment.   Sekhnet is of the school that teaches Murphy was an optimist.  It is uncanny how often this maxim comes into play.

I was riding with a friend in the five borough bike tour in May.  We were on the FDR, a section of the highway closed to cars so that thousands of bicyclists can ride on it in the annual 40 mile five borough bike tour.   I told him it looked like the organizers had finally gotten it right as far as pacing and traffic, we hadn’t experienced a single annoying bicycle traffic jam so far.  I may even have mentioned Sekhnet’s “Murphy!”, a crow caw expressing her deeply held superstitious belief that any mention of good fortune immediately activates Murphy’s Law.   

Not five minutes later, as we entered a tunnel portion of the FDR where riders usually let echoing, joyful whoops out as they come into the tunnel, there was a bicycle traffic jam.   We stopped.  We waited.  In a fucking tunnel.  With thousands of others straddling their bikes.   Nobody moved for several long minutes.  Not a single whoop echoed.  “Murphy!” I heard Sekhnet call.  

I wrote recently to a friend that although I love spending time with friends, I am ordinarily not plagued by loneliness or desperation in the extended periods I spend alone.   I value my own company, I added, and blah blah blah.   No sooner did I send the email than I heard Sekhnet’s “Murphy!” and I was overcome by a painful sense of my isolation.

Why is it that I value my own company?  It is largely for the intelligent conversation, I tell myself.  

“Sure, because everything you say you agree with,” says the skeptical side of me.     

“Not necessarily,” I say, candor mixed with pride.  

“Rattle on, rictus face,” says the skeptical side, in a voice modeled on the Dreaded Unit, my father’s.  “You try to make a joke of this, of course, but who, if not fundamentally lonely, would spend all their time working for free the way you do every day, pounding at the keys like a geriatric cub reporter, trying to make sense of a world that makes little sense, ‘communicating’ your innermost thoughts to imaginary others?” 

Well, I grant you all that, but here’s the thing.  Our world is fundamentally irrational.  Look at the sick relationships all around.  Why do people stay in these destructive arrangements?  I had an insane friend once who married a woman I always think of as Hitler.   She abused him for twenty or more years, they separated, got back together, fought.  It was painful to watch him whine at her, see the way she treated him.   He defended her mightily, and then, eventually broken by her indomitable brutality and his overwhelming desire to have sex, he joined a cult, found a woman to have sex with, and decided his wife was Hitler after all.  I simplify, of course, for the sake of the larger point, but I can vouch for the bones of the story.  

Sarno’s theory about rage converted into chronic bodily agony resonates because virtually everybody I know is subject to outrage, a certain amount of inwardly directed rage, the open river of rage that surges in the increasingly endangered world as climate change flash floods run down the ravines.  The great USA is in the hands of cynical madmen, with the personification of spoiled childish self-regard as its figurehead.   They are crazy as foxes, these motherfuckers who will squeeze every drop of blood from the poor to increase their own wealth by 1%.   It is no small thing, 1% of ten billion dollars is a shit load of money.  If I have to pry it out of the hands of 40,000,000 dying children, so be it.  Those aren’t my kids.  

Not my kids.  That’s the mantra of the Free Market.   We love kids, our kids, our friends’ kids.  We don’t care about strangers’ kids as much as we do the kids we know and love.  We don’t care about the kids of people who live far away and might be enemies.  When those kids are killed we shrug, philosophical, bad shit happens.  When we ourselves kill them we shrug, we didn’t actually kill them, our fucking government did.  It’s not as though we live in a real democracy where we have any say over how our elected government treats far away children.  

“Stop looking for logic, you supine, high-minded motherfucker,” says the skeptical side.  “You will search human affairs in vain if you look for reason, beyond the simple, ubiquitous rationales for all behavior, bad and good.  We’ve long observed that almost nobody acts believing that they are doing wrong.  Action almost always involves the belief that you are doing the right thing, even if this belief is balanced on an insanely slapdash rationale.”

 “Sure, the classic ‘she was begging to be raped, dressed like that’,” I say, I say. 

“That’s right.  That’s a good self-talking baby!  You are the best self-talker.  Look how much fun we are having!,” says the adorable skeptic.  

“Oh, cram it, clown.  I’m going to look at angry Frederick Douglass’s beautiful Independence Day speech, delivered to white people in Rochester NY in 1852, as his countrymen celebrated the miracle of American freedom as millions of his fellows lived in chains, doing backbreaking work for free, for America’s wealthiest and most genteel.  

Here is a famous passage: 

What, to the American slave, is your 4th of July? I answer; a day that reveals to him, more than all other days in the year, the gross injustice and cruelty to which he is the constant victim. To him, your celebration is a sham; your boasted liberty, an unholy license; your national greatness, swelling vanity; your sound of rejoicing are empty and heartless; your denunciation of tyrants brass fronted impudence; your shout of liberty and equality, hollow mockery; your prayers and hymns, your sermons and thanks-givings, with all your religious parade and solemnity, are to him, mere bombast, fraud, deception, impiety, and hypocrisy — a thin veil to cover up crimes which would disgrace a nation of savages. There is not a nation on the earth guilty of practices more shocking and bloody than are the people of the United States, at this very hour.

You can read the entire speech by a unique, inspiring American genius here.  Our enraged commander-in-chief recently stated that Frederick Douglass’ “amazing work” is “being recognized more and more“.  Most Americans knew about Douglass and his work a hundred and fifty years ago.   Read his words of July 4, 1852 and, like the late speeches of Martin Luther King and El Hadj Malik el Shabbaz (Malcom X), try to picture how many decades have passed with only the tiniest adjustments to the hideous truths these American geniuses plainly set out.  

And have a very fucking happy Fourth of July and try not to blow your hand, or your nuts, off celebrating our freedom.

So long to Dr. John Sarno

I first heard of John Sarno many years ago.  My good friend’s mother had terrible sciatica, she’d been to several doctors and got no relief.   She credited Dr. Sarno, and his radical but practical treatment, with curing her.  I have another friend, subject to crippling back pain, who similarly  credits John Sarno with giving him a way out when his back immobilizes him.  

Most impressively, Sekhnet’s first cousin, the least New Age person you could imagine, saw Sarno for crippling back pain.  He was skeptical of what sounded like New Age bullshit coming from Sarno during the doctor’s orientation lecture on the program.  He said it made no sense to him.   He stayed around afterward and spoke to Sarno who asked him gruffly what he had to lose.   Sarno pointed out that he’s stayed to talk, so that should tell him he might as well fucking try it, right?   He followed Sarno’s program and was cured of his crippling back pain.  He too swears by Sarno.

Sarno’s theory was that much severe, chronic pain is the psyche’s defense against rage, a terrifying and very common emotion that is often too threatening for humans to deal with.  The rage is masked by extreme physical agony, which virtually everybody prefers to the unresolvable emotion of extreme and incurable anger.  

According to Sarno, and those cured by his method, when you get closer to knowing what is causing your rage, and understanding that the crippling pain is your body’s response to it, you can begin to calm that bodily response.   The cure rate of the patients Sarno saw was very high.  Still, he was regarded as a pariah in an industry that sees pharmaceuticals and surgery as the only scientific answers to what seem to be purely physical problems.  Sarno’s focus on the mind/body connection was frowned on by these empiricists.

A documentary about Sarno, All The Rage, was released the other day, which is why his name came up at dinner with Sekhnet’s cousins the other night.   You can see the trailer here.  The morning after we had dinner with Sekhnet’s cousins, one of them sent us an email.  In a neat bit of cosmic timing, John Sarno had died the day before, right before the documentary opened and a day before his 94th birthday.  Here is the NY Times obit for Dr. Sarno.  

I was thinking about someone close to me who has been suffering undiagnosable and disabling chronic disease for many years.  She has been to every specialist and the new theory is that this recurrent and painful loss of her voice is related to allergies that seem to flare up only when her vacation ends.  She lives in a situation that certainly produces a fair amount of understandable rage on a daily basis.  It would not surprise me if, after our conversation about Sarno and his theory, and our many other talks, she did not click on the links I sent her to the documentary and the obituary.  

The more threatening the psychic pain, the more likely we are to do anything possible to avoid it.  Makes complete sense, but it’s also very horrible.   Goodbye, John Sarno.

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!

Why Can’t I Concentrate?

OK, granted, the odds of remission of my idiopathic membranous nephropathy, after months of the proposed immunosuppressive treatment, a cocktail of steroids and chemotherapy-type drugs, my nephrologist admitted the other day, are about 50%.  Versus the odds of spontaneous remission, which has not been widely studied, but which seems to be in the 30% range, according to this footnote from a recent hospital study of the disease in Spain. [1]

There is also my root canal, which began more than two months ago.  Under the temporary crown there is more discomfort than I had when I initially went to the dentist. The dentist suspects the wisdom tooth adjacent to the root canal may be the culprit, suggests it might be best if the oral surgeon pulls it before a permanent crown is fitted.

The cat, who has one kidney, had very bad lab results the other day and was retested today.  Although he’s consistently hostile to me, he’s a good cat and I’m very fond of him.  Sekhnet adores him, and he adores her.  So that’s a worry.  

A bot from the fucking New York State of Health Marketplace, where unemployed people like me are obliged to buy their mandated health insurance under Obama’s admittedly imperfect Patient Protection and Affordable Care Act, denied me the subsidy the law entitles me to, in January.  Donna Frescatore, the director of NYSOH, has a strict policy that nobody there may disclose her name. They also have no procedure for correcting their many errors, outside of a snail-paced appeals process.  I have so far overpaid, by over $1,000, the insurance premium the law says I should pay, with no end in sight, as I wait for a person with a below average IQ to call and conduct my impartial “telephone appeal” of their clear clerical error.

I have no idea why I’m so distracted lately, but I have unpaid work to get to today, so let me not dilly-dally any longer.

We went to see Amy Goodman, creator of Democracy Now!, speak at a nearby college on Friday night.   I love Amy for her integrity, courage, honest reporting and a strong facial resemblance to my beloved grandmother Yetta.  Amy spoke at The New School, one of these $50,000 a year museum-looking places for the children of a select economic class.  It was an inspiring talk.  Afterwards Sekhnet bought books for Amy to sign and when it was our turn I said “Amy, you’re an American hero,” which Amy accepted with a bland semi-smile.

We are 5% of the world’s population and have 25% of the world’s prison inmates, Amy reminded us.  I did the math in my head.  If we were an average country, we’d have about 5% of the world’s prison population.   At 25%, we have five times that, or 500% more in prison than the average country.   God bless these exceptional United States, our strictness with poor people’s morality and our innovative, corporately-operated, run-for-profit private prison system.

During the March for Science a few weeks ago, which Democracy Now! covered, Amy described a rainy, raw day.  The assembled masses shivered at the rally.   A week later, at the March for Climate Change Awareness (or whatever it was called) it was sweltering, the hottest day in DC on that date.   Amy suggested anyone calling themself a meteorologist should, any time extreme weather is encountered, mention that this is another sign of climate disruption.

They don’t harp on climate disruption in the mass media, she pointed out, because some sponsors would object.  She mentioned the rash, in recent years, of earthquakes in Oklahoma, a region that never had any.  This increased seismic instability is the direct result of hydro-fracking, a controversial and toxic method of extracting natural gas from deep in the earth.   Same deal with the “debate” over fracking, corporate sponsors are not going to stand by while somebody badmouths their lucrative product, which may, arguably, cause an earthquake here and there, in some armpit in Oklahoma where people with land are getting paid a lot of money for fracking rights.

I sat there rhetorically wondering why there is any “debate” about any of this.  Fucking pieces of shit in some board room are making a killing — only reason there’s any “controversy”.  This controversy/confusion is crafted by well-paid public relations geniuses who come up with a counter-factual narrative that is more satisfying to certain salt of the earth people who, not unreasonably, suspect that elites are fucking them.   These well-crafted stories, usually based on freedom and a sinister conspiracy by those who hate our freedom, are more satisfying to low-information types than cold scientific data and the academic and media elitists who spout it.

Inspired as I was listening to Amy speak, and reading her book afterwards, I still feel like hollering.  I lift my head and scream into the silence of cyberspace and wonder what the fucking use is of preaching to a half dozen people who wonder by this site and occasionally hit “like” or “follow” to encourage me to do the same for their silent screams.

Then I hear a sound bite from our diminutive racist Attorney General, wants to return America to the good old days when you could mass incarcerate nig… eh, bad hombres, for smoking weed.  “Good people don’t use marijuana,” said the smug little twerp a while ago, announcing his intention to return to the heyday of Nixon’s racist war on what the former president fondly referred to as “niggers”, “spics”, “kykes” and other enemy freaks who smoke pot and take other dangerous, morally degenerate drugs. 

What the fuck?  Are we really going to live through a remake of this hideous chapter from the toxic waste bin of history?  

“‘Make America Great Again,’ says right there on the hat, asshole.”

Got a lot of haters here in the Land of the Free and the Home of the Brave who think that’s just fucking ducky, sure, fuck the n-words and their unAmerican friends — and keep your damned hands off our meth and prescription opioids.  Only job in town is over at the damned privatized prison—- “lock ’em up!  lock ’em up!”

Meanwhile, people like Amy Goodman are out there being true American heroes, fighting idealistically for what we should all be fighting for– a society that values human lives more than corporate profits, no matter how “free” we can make “free trade” sound.  Of course, there’s no real money in that, is there?  Heh, Catch-22.

 

[1]   Spontaneous remission is a well known characteristic of idiopathic membranous nephropathy, but contemporary studies describing predictors of remission and long-term outcomes are lacking. We conducted a retrospective, multicenter cohort study of 328 patients with nephrotic syndrome resulting from idiopathic membranous nephropathy that initially received conservative therapy. Spontaneous remission occurred in 104 (32%) patients: proteinuria progressively declined after diagnosis until remission of disease at 14.7 +/- 11.4 months. Although spontaneous remission was more frequent with lower levels of baseline proteinuria, it also frequently occurred in patients with massive proteinuria: 26% among those with baseline proteinuria 8 to 12 g/24 h and 22% among those with proteinuria>12 g/24 h. Baseline serum creatinine and proteinuria, treatment with angiotensin-converting enzyme inhibitors or angiotensin receptor antagonists, and a>50% decline of proteinuria from baseline during the first year of follow-up were significant independent predictors for spontaneous remission. Only six patients (5.7%) experienced a relapse of nephrotic syndrome. The incidence of death and ESRD were significantly lower among patients with spontaneous remission. In conclusion, spontaneous remission is common among patients with nephrotic syndrome resulting from membranous nephropathy and carries a favorable long-term outcome with a low incidence of relapse. A decrease in proteinuria>50% from baseline during the first year predicts spontaneous remission.

Hospital 12 de Octubre, Madrid, Spain.   source