Note to Eric

As predictable as it is SAD!

Dear Eric:

Please excuse the liberty, colleague, I’m responding to the November 6 letter from one of your Division of Social Justice assistants, Jennifer Lonergan, who incorrectly stated that I had addressed my letter of October 12 to “Eric Schneiderman”.   

I voted for you in each of your State Senate elections and for A.G.  I share many of your political views, including the belief that a primary role of government is protecting citizens from the predations of the powerful.  I applaud the proactive stances you take on many important issues.  I don’t blame you personally for the inadequate response to my long and detailed letter, though it reflects poorly on the office that acts in your name.

Ms. Lonergan begins her point by point refutation of my painfully researched assertion that the New York State regulatory help scheme for low income health insurance consumers is a cul du sac by demonstrating active listening, the dismissiveness of her tone in restating the obvious probably inadvertent:

It appears that it is difficult for health care consumers, such as yourself, to ascertain where to turn for help regarding various health care issues, and further, that you received misinformation from various entities tasked with assisting consumers with health care issues.

Ms. Lonergan, although perhaps not fully grasping the blood pressure elevating vexation that unregulated health insurance causes low income New Yorkers,  did an impressive amount of cutting and pasting in assembling a letter full of potentially helpful sources that could possibly solve some pressing healthcare-related consumer problems within only a few months.  According to her, the help desk in your office is more than a match for most of the vexing, unregulated consumer abuses detailed in my letter.   

Her response to this paragraph was noteworthy:

Essential Plan members do not have a right to file complaint appeal (sic).  If they need assistance filing a grievance or appeal, they may also contact the state independent consumer assistance program at:  Community Health Advocates, 105 E. 22nd Street, NY NY 10010 or 888-614-5400 or email at cha@cssny.org

source:  Anthem’s National Contact Center Document under NY market tab for “Essential” plan updated as of 12-14-16 at 7:56 a.m.

She informed me, presumably based on research unavailable to a consumer like myself, that the health insurance representative had been mistaken when he pretended to read corporate policy from his customer service manual.  This leaves me marveling at the rep’s inventiveness and eidetic memory,  “reading” me the identical made up wording several times, so that I could transcribe it accurately.  Adding that it was printed in red, and providing an invented source, were truly brilliant, if diabolically misleading, touches.

Ms. Lonergan also corrected my slipshod use of the legal term “fraud”; she was good enough to point out that I had not established an essential element, since doctors I’d been referred to by the insurance company who had refused me treatment had not actually taken payment from me.  I guess, arguably, the premiums I pay every month to the corporation that referred me to these doctors are beside the point for purposes of a claim of fraud.

I greatly prefer the letter from Mr. Bockstein (attached), which, while clearly sent to me in error, at least spelled my name right and did not dismiss the health-threatening concerns I’d taken pains to detail carefully for your office’s consideration, practices I offered as illustrations of the desperate need for the policy changes I suggested.  I subsequently had Mr. Bockstein’s kind assurance that my original letter was under consideration by an advocate named Jennifer Lonergan who would be getting back to me.  No point beating a dead cul du sac here.

I suppose the most honest letter I could have received in reply to mine would also have been the most depressing: low income healthcare consumers get whatever care they get, and whatever version of due process goes along with it.  And though they may address a letter to a champion fighting institutional injustice, with the power to advocate changes to grossly inadequate protections under the law, they can expect, at best, a letter like Ms. Lonergan’s.

Have a great day,
Eliot “Widaeu”

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For reference, the corrected file number on my original letter is 1370738.  Presumably my letter is also preserved under that file number.

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Dribs and Drabs

What the fuck are “drabs”?  What are dribs?  Fucking cliches… some of ’em with roots lost in the mists of time.

Yesterday, in the USA, a transgender politician, a former journalist, unseated a thirteen term douchebag in Virginia’s House of Delegates election.  The defeated 73 year-old Republican douchebag had referred to himself, apparently, as “Virginia’s Chief Homophobe”.  Doesn’t that old cocksucker know that homophobe means somebody who fears homosexuals?   What a fucking adorably ignorant faggot….  Congratulations to newly elected Danica Roem, you go, girl!

But I digress.

Cabin fever slowly roasts me as my lock-down in Sekhnetville continues.  I wasn’t told when I went for the immunosuppressive therapy two weeks ago, not by doctor, nurse, medical technician (though Sekhnet points out that SHE told me), that I could be randomly fucked up very easily with no immune system.   You’d think it could have been printed on a card every first time patient could be handed, along with the list of their expected side-effects:

“You may very well feel absolutely fine when you leave here today.  Do not be fooled.  Your immune system is suppressed, you are susceptible to every bug out there.  Stay out of crowds, restaurants, public place of all kinds, for a week.  If you go outside, carry Purel and use it after touching anything someone with a fucking runny nose may have touched or sneezed on.  Pretend you are the Boy in the Bubble for the next few days.” 

“Common sense, (idiot),” says Sekhnet, hammering home the implied “idiot” with an uncannily Alice Kramden-like facial expression.

In other news, good for Puerto Rico saying “no” to Whitefish Energy.  Look, I don’t know if it was a corrupt no-bid $300,000,000 contract to some people closely attached to the corrupt Trump administration, but their prices, if nothing else, looked a little suspicious.   Something like $300 an hour for the guys doing the electrical work on the ravaged island.   Forget that Ryan Zinke, Trump’s Secretary of the Interior, is from Whitefish, the small Montana town where the two person corporation is located, or that Zinke’s wife, Lolita Hand (if that is her name), and the wife [1] of Whitefish Energy CEO Andrew Techmanski are facebook friends.   Zinke and Techmanski (great name for a guy with a tech company, man) both say there was nothing improper about how the contract was awarded.    Shouldn’t that be the end of it?   

I’m reminded of the standard for judicial recusal from a case.  If there is “the appearance” of impropriety, a judge must recuse him or herself from ruling on a controversy before her/him.  For example, if the judge is close personal friends with one of the parties, has gone on vacations with them, flown in their private plane, etc. during the pre-trail period, there is an appearance of impropriety and the judge is supposed to recuse herself from judging the case.  Although the judge might very well be able to rule fairly and dispassionately on the merits, it looks bad if she stays on the case.   The “appearance of impropriety” standard is an element of fair play that is intended to give people faith in the impartiality and integrity of our legal system.   

So you have Antonin Scalia on TV, after he refused to bow out of a case involving his good friend, the aptly named Dick Cheney and his secret energy task force meetings that preceded the disastrous deregulation of energy in California.   Scalia was a brilliant guy, quick on his feet, with a smart mouth on him.   He was apparently personally a very warm and lovable person, odious as virtually all of his sickening reactionary pontificating from the bench generally was.   A young female reporter asked Scalia, since he had just returned from a hunting trip with Cheney, if there wasn’t an appearance of impropriety in sitting in judgment of a case involving Cheney’s claims of executive privilege, state secrets, go fucking fuck yourself, etc.   Scalia didn’t miss a beat.   

“I think it’s a sad day when Americans question the impartiality of the Supreme Court,” said the affable Justice snippily.

It was a sad day in America, without a doubt.  Doubly so because the reporter was unable to say, “granted, sir, it is a sad day, I agree, but that was no answer to my question.  I asked you about the standard for recusal, which is the “appearance of impropriety” and why you have not recused yourself from this case involving your friend Vice President Cheney.  What do you say in answer to that, you smart-mouthed bastard?” 

Of course, there’s no point to living in a dream world, right?  I don’t know if Zinke had anything to do with the contract for Whitefish Energy, and I don’t know anything about Zinke’s character, except that the fact Trump appointed him to a powerful government post does not speak well for it.  As no less an authority than George F. Will said recently (I paraphrase, but barely), anyone who is associated with Trump is irrevocably soiled with a stink that can never be washed off.   Ah, here he goes:  Pence is a reminder that no one can have sustained transactions with Trump without becoming too soiled for subsequent scrubbing. 

Well, wash my mouth out with a fucking bar of fucking soap, I have to go make some more tea and put socks on, the temperature seems to be dropping in here.   I feel some post nasal drips and drabs a comin’.

[1]    Techmanski’s wife, Amanda, is listed as one of two managers for Whitefish Energy Holdings LLC. She is a registered nurse, records show, and last month she touted on Facebook a new job she was starting as a nurse practitioner.

With Amanda Techmanski as a manager, Whitefish was listed as an “economically disadvantaged woman-owned small business” on a federal Energy Department contract it won in July for a small transmission line repair in Arizona. The company’s registered address also goes back to the couple’s remote Montana home.

A prior business venture in the last decade ended poorly for Andrew Techmanski, records in Britain show. In 2009, he resigned from a business he had helped form three years earlier to string electric lines. The company folded less than two years later, and some debts remained outstanding last year, according to records.

source

Side effects

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

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

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

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

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

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

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

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

A Giant Rat (from Plato’s cave)

Recently I rode my bike down the beautiful path from the northern end of Manhattan, along the Hudson River, to Sekhnetville, about 13 miles south.  I really must post some photos from these trips, it’s a very photogenic ride.  You can see how beautiful the island was before wealth-crazed developers began heedlessly exploiting virtually every inch of it.   

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 The ride on the bike path becomes magical around sunset when the sky and the river are constantly changing color.

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As I’m now older, 61, and aware of certain health concerns, I tend to take a couple of breaks along the way.  I generally find myself resting just past the sewage treatment plant the city built in Harlem decades back.   In the plaza in front of Fairway I get off the bike, sit on a bench, have some water, a snack, rest a few minutes, watch the river flow.   

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The other night, as I was about to get on my bike to continue on a particularly beautiful section of the path, I saw a giant black rat racing toward me.  It was impossibly huge, this rat, and coming straight at me as I began to stand, hands on the handlebars of my bike.  The mutant rat was illuminated by the headlights of a car.  When the car turned, and the light shifted, I saw in that instant that the immense black rat was actually a tiny, terrified mouse, scrambling for cover about ten feet away and to my left.  What I had seen was its monstrous shadow, created by the headlights of the car.   

Reminded me of Plato’s allegory about the cave.  

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The Shoelace

Bukowski’s great poem about the killing nature of the accumulated frustrations we are powerless against captures the accursed essence of our lives here.  It’s that constant swarm of trivialities, culminating in a shoelace that snaps with no time left, that finally breaks a man, sends him to the madhouse.  

“I will not be broken,” he said to nobody.  

Of course you won’t, nor die, either.  

Toilet doesn’t flush.  Call super.  See you between 6 and 7, he says.  At 9:30, after several chats with the lying super, his two underlings arrive.  One shows me how, by forcing the flush plunger inward toward the pipe while pushing it down, you can get the broken device to flush.  This works four or five times after they leave, then, kaput.  Meanwhile, new part ordered for your antique toilet, will take a week.   Super recommends improvising, try not to shit for a week or so, the toilet will eventually be fixed.  

New York City does not have an answer, besides take the landlord to Housing Court.  You look for on-line help.  The help number on their handy PDF on Housing Code Violations connects you to a wrong number.  

Doctor friend provides new information on best practices for treating your idiopathic (“cause unknown”) kidney disease.   The medical journal article she’s copied for me calls for watchful waiting before IV steroid therapy if daily proteinuria level (the amount of unfiltered protein your kidneys pathologically spill into your urine) is below 2 grams.  Doctors have no idea what my daily level is, that requires a 24 hour urine test to determine.   If you think the nephrologist who charged $860 for my first visit would have known to order such a test, you think wrong.  She urged me to have an unneeded, expensive, kidney biopsy instead.  

It’s been complicated hearing back from my primary care doctor on the 24 hour urine, how to get the jug that I will collect 24 hours of urine in.  Only two or three calls to his office so far.  Maybe the third or fourth call will be the charm.

You learn, too late to save the several thousands of wasted dollars, that the so-called Silver level health insurance plan you bought, hoping for better treatment than you had last year on the “Essential Plan”, the plan you are paying almost 900% more for (after the subsidy, restored only seven months after being erroneously removed), gives you coverage identical to what you had last year on pay-as-you-go Medicaid.   I must not think of the more than $4,200 flushed down the toilet– especially now that my toilet doesn’t flush.  

The best things I write these days, I have to pull teeth to get any feedback on. I write these things ’til my forearms ache, and read them aloud to Sekhnet.  She tells me some of the recent ones with the skeleton are excellent overviews of this ambitious, highly speculative project I embarked on almost twenty months ago.   I heard an interview with Aaron Copeland, late in his life, lamenting that so few people heard his new music, wondering how a composer goes on without an audience to hear his work.   I felt bad for him, even as I wondered where he got the temerity to whine about not being as famous as he used to be.

The list goes on and you begin to wonder about the futility of trying to persist.   How long a NYC landlord has to fix a broken toilet, under NYC law, should not be such a mystery.  It is.  You take a bucket and manually flush the toilet, it takes at most two or three buckets full.  The bathtub is right next to the toilet, easy to fill the bucket as many times as you like.

So, shut the fuck up and keep bailing.  You’re lucky you live in a place where there are flush toilets, bountiful running water, sanitation, a medical industry, a semi-functioning government.  You have fucking first world problems, white boy.

“Well, as I always said, Elie, you’d complain if you were hung with a new rope,” said the skeleton of my father.  “With your fertile imagination comes an ability to brood that is beyond the powers of most people.  Not that I envy you, I’m just sayin’.”   

Yeah.   Be careful when you bend over.

Death sneaks in again

It is sometimes tempting to call the workings of our corporate world evil.  A ninety year-old woman, until her recent broken hip fiercely independent, lives out her last days in a bare bones hospital ward where her needs are ignored, though she is kept miserably alive, her tab paid by Medicaid.   There may or may not be a government agency that can help her.  Sekhnet and I lack legal standing to advocate for her, though I got two numbers today that may allow Margaret to advocate for herself.    

The ACA, which right-wing zealots and “Birthers” are still bent on abolishing as an illegitimate “Negro” plan, mandates that low income citizens buy private insurance on their state’s health exchange.  New York State of Health Marketplace was designed by Kafka, during an LSD nightmare.  The agency is run by an unaccountable political appointee director (Donna Frescatore) who has made it her agency’s policy for no worker to divulge her name.   They have no effective method of correcting their many errors, the wait for an “appeal” is months’ long.  

A more vexing collection of useless, low-paid motherfuckers I have never encountered, and I am a veteran of Adult Protective Services, the New York Housing Authority and the Housing Court’s Guardian ad Litem program.  I have seen hideous bureaucracies.   The unaccountable agency entrusted with providing health care to low income citizens in New York State is by far the worst.  

Had a nice chat today with a guy from NYS of Health Marketplace Appeals, Patrick, very patient– though even he had his limits in that regard.   My appeal should be conducted over the phone in a month or two, after that, presumably, I should be allowed to pay only what the law requires and not twice what the law requires, as I have been paying since an erroneous denial in January.

While talking to a social worker at the Department for the Aging, who spoke on the QT since I lacked legal standing to have the conversation on behalf of a mere friend, I had a call from Sekhnet.   Sekhnet has been overwhelmed and tearful lately, in part due to the steroids she’s taking for her breathing troubles.   She has been worried about my potentially dangerous kidney disease, and the fact that virtually my entire vegetarian diet is composed of foods, I learned yesterday,  very bad for compromised kidneys.  She’s been crying because Skaynes, our beloved cat, had test results the other day that showed his one kidney is in trouble, this in addition to a flare up of pancreatitis.  

I broke away from the kind, long-winded social worker, put her on a brief hold, and took Sekhnet’s call.   She was sobbing.   “Liz is dead,” she told me.  I expressed my sorrow, told her who I was talking to and said I’d call her right back.

Liz was the long-time partner of Tony, a gregarious fellow we met while he stood smoking cigarettes in front of Sekhnet’s building.   It emerged that Tony lived on the second floor with a shy, agoraphobic woman named Liz, a lover of cats (they hosted two former strays, Sid and Gus), and that it would be great for us to get together some time.   Tony explained that he’d have to work on Liz, and his work seemed to be a success.  We had dinner, after researching what Liz, a diabetic, could safely eat.   I think it was garbanzo bean pasta we finally made.  (To be strictly accurate, this dinner occurred after we returned from our trip).

Shortly after we first chatted with Liz and Tony, Skaynes began vomiting frequently and rarely coming out of his bed.  We were scheduled to leave for a two week trip to Israel in a few days.   Liz, Tony and our old friends’ son Avram generously stepped in to take care of Skaynes.   They wrangled the cantankerous cat into his carrier and ferried him back and forth to the vet for treatments.   The treatments were daily for a week or more.  Skaynes recovered while we were in Israel, we got their medical updates by email.  Liz and Tony (and the indefatigable Avram) had saved his life, and enabled our long-planned trip to happen, and we felt very grateful.  

We got together with them another couple of times.  Then they were having troubles, Tony had resumed drinking, after years on the wagon and in AA.  Liz had a past that included drug addiction and she could not tolerate this relapse.  There was tension.  Tony moved out, moved back in, was on a job in New Jersey when he had a fatal heart attack.  

Liz affected an air of stoicism, but the tragedy made her no more zealous about checking her diabetes monitor.  She’d been found in a diabetic coma before.  Tony said the beeping of her monitor annoyed her and she’d often turn the machine off rather than do what the beeping was reminding her to do.

After Tony died, Liz lived alone with Sid and Gus, in the apartment owned by her mother.  Her mother lives in Florida and needs money, is in the process of selling Liz’s longtime home.  Packages sat outside Liz’s apartment door for days at a time.   I followed up with Sekhnet who contacted Liz.  She was reassured when Liz finally returned a call, sent her some adorable animal emails (Liz volunteered at a cat shelter) with a funny note and also inquired about Skaynes.     More packages outside her door the other day.  Sekhnet could get no answer from Liz lately.  She convinced a neighbor with the key to have a look today.

The neighbor discovered Liz’s dead body.  One of the cats was sitting next to her dead body.  The cats had not been fed for several days.  The last email from Liz, about a week ago, noted that a dog will sit sadly by their master’s dead body and starve, too depressed to eat.  A cat will do the same, until they get unbearably hungry and start eating the dead master’s face.   The neighbor fed the cats and called Sekhnet.  

When I got off the phone with the social worker I called Sekhnet back and did my best to soothe her, though there is not that much real soothing to be given under terrible circumstances like this.   The world can be a cold and cruel place and one must count oneself fortunate only to be fighting with corporate cocksuckers, while Death, smug and implacable, waits with the infinite patience of one who has never been denied, to snuff out your last breath.