Tyler Weaver's Blog, page 54

Invasion / Fortification

“And in a word, he watches himself as if he were an enemy and lying in ambush.” – Epictetus, ENCHIRIDION, XLVIII

Through the cracks in the fortifications of I the invaders within lay siege to the weary wasteland of my mind, exploiting that moment of greatest impotence against their onslaught, each fire arrow more fantastic, more important than the last and more impossible to catch and to stop and there is nothing there but that which circles and circles and circles and the more I fight it the more it takes hold and I tell myself that I am not my thoughts and I tell myself and I tell myself but my thoughts have other ideas. They impale, they possess; they submerge my feet in cement and hurl me off the rickety docks into the murk and the muck and leave me without the energy to swim back to the surface until at some point, maybe seconds, maybe hours, maybe days later, a ladder of frayed rope breaks through the surface and its breeze passes across my clenched eyes and I open them and and I find, bit by bit, step by step, that I can, from some unknown somewhere, call forth the energy to climb its uncertain rungs, with bruised and battered and bleeding hands and feet encased in cement, casting off its weighty imprisonment with each step towards that path back to myself, exhausted but vigilant of the shrapnel strewn above and stepping carefully with atrophied feet as I survey the aftermath and rebuild, plugging the heretofore unseen cracks in the fortifications of myself and building new ones in preparation for the next time because the only truth is that there will be a next time: the invaders never really leave; they are always there, with me, part of me, waiting at the gates of myself with arrows at the ready; such is life, again and again, forever and ever (amen, maybe / oh, man). 

Life / Commodity

Caveat: these thoughts are based upon my initial reading of FDA Commissioner Scott Gottlieb’s press release of 11 December 2018, on the March 2020 reclassification of insulin (among others) from a drug (New Drug Application / NDA) path to a biologic (Biologics License Application / BLA) path as part of a 2010 plan that “improves the efficiency of the biosimilar and interchangeable product development and approval process” to bring down drug prices, and may be based on an incorrect reading (I’m a writer, not a doctor, Jim) and/or an emotional reaction.

(All quotations herein are derived from the above link.)

First, I applaud Dr Gottlieb for drawing on the history – and stakes – of insulin to make his point:

“Access to affordable insulin is literally a matter of life and death for these [seven million] Americans. This is a challenge, even though insulin was discovered nearly a century ago by a Canadian research team led by the orthopedic surgeon Frederick Banting in 1921. In 1923, Banting’s team was awarded a U.S. patent which the team sold to the Board of Governors of the University of Toronto for a grand total of $3.00.”

Let me give you the short version of life as a type one diabetic: without insulin, I will die. I’ve been a T1D since October of 2016 and the first day out of hospital, when I paid for my first batch of insulin, I broke down at the new price tag on and the commodification of my life – and that’s with being lucky enough to have reasonably good insurance through my wife’s employer (I would be dead without her and without it); to hold hostage, then, the lives of those suffering from this chronic disease – that attacks from no fault of our own, irrevocably transforms lives, and cannot be cured – for higher profits to line the coffers of the “three firms [Novo Nordisk, Sanofi, and Eli Lilly] control 90 percent of the global insulin market, and produce all the insulin used in the U.S.”, is not only morally repugnant but should be considered criminal.

Dr Gottlieb, further:

“Today, insulin list prices regularly increase by double digits annually. In mid-November, the Congressional Research Service reported that the list price of one type of insulin had increased nearly 600 percent from 2001-2015, from $35 dollars a vial to $234. Another study from the Schaefer Center at USC found that “the average U.S. list price of [four insulin categories] increased by 15% to 17% per year from 2012 to 2016.”

Unlike so many of the stories I hear, of $1000-a-month deductibles, of exorbitant out-of-pocket costs for single vials, and of parents having to bury their children once they age out of dependent coverage and resort to rationing, I’m one of the lucky ones: I pay only an average of $250-$300 out-of-pocket each for a three month supply of my long-acting and mealtime insulins and manage, through a quasi-self-totalitarian regimen of diet and exercise and stress reduction, to extend this three-month supply to, give or take, twelve months (note: the prices above don’t take into account testing supplies, which my insurer doesn’t cover; for those, I turn to Amazon). In spite of being one of the lucky ones, the choices I make day in and day out have put me into therapy for the last year because I will freely admit to wondering sometimes, when the pressure mounts, what, exactly, the point is in continuing the marathon battle for my life against an unbeatable enemy (short, working, version of the point: I’m a stubborn bastard); I cannot imagine what those less lucky than I have to endure.

(Sorry, though I did say this would get emotional; back to the news:)

While my understanding of this NDA-BLA change in classification is based upon the trickle-down theory that competition brought about by a new market for biosimilars will drive down prices of the original reference medicines – 

“FDA research shows that drug prices are directly related to the number of generic manufacturers in the market… once three or more generic competitors enter the market, discounts can rise to 80 percent or more of the branded price”

and that Dr Gottlieb takes great pains to point out that

“Patients on medications that will transition from being regulated under an approved NDA to a deemed BLA won’t be affected by the transition.”

– my concern is a question of whether or not, in the name of free-market “competition” for my life, these measures will actually bring down the cost of my insulin or will they instead give my insurance company – nevermind those high-deductible vulture-plans that already lead to rationing and ruined lives – a necessary vantage point from which to drop coverage of quality insulins in favor of potentially sub-par biosimilars and create a widening gap of insulin inequality in coverage and in health?

I won’t deny, however, that seeing someone – even someone who, in light of his preceeding statments, still claims to be “optimistic that the abiding faith of those who make their living probing science and developing new medicines will remain innovation, access and the advance of public health” – pay more than cursory lip service to the predatory behavior of pharmaceutical corporations is cause for celebration but, in the absence of clear, transparent details of Dr Gottlieb’s “efficient regulation,” (including questions of enforcement) I cannot be blindly enthused or hopeful that things will change for the better in March of 2020: after all, how many important regulations have been steamrolled and/or corner-cut in the last two years in the name of short-term, revanchist political victories and free-market PowerPoint/Linkedin buzzwords like efficiency, “competition,” and “responsible risk taking”?

Still wrapping my head around details which I may have missed; as more information trickles out (or needed corrections elucidated), I’ll post thoughts and revisions here.

Mastodon, Revisited

As with all of the insignificant ramblings that I hurl at this space, the sentiment conveyed here is subject to change and represents only a present accounting of what passes for my thought processes about things that really aren’t that important but nonetheless provide a useful diversion (in theory) from the toil of The Work and a means to look at said Work with fresh eyes once the writing here is complete and the thought exorcised.

The search for that elusive middle ground between Informality and Newsletter, a Goldilocksing of my digitally social / ambient self continues apace: while I still enjoy posting to Instagram (in spite of the invasive Zuckerbooking of the platform that will, I’m certain, only get worse), it doesn’t fulfill my need for a home for tossed-off thought exorcisms (nor does the Zuckerbooking help). And, while I want to be comfortable with Twitter again, I find myself falling – with quickening pace – into the same traps of anxiety and expectation that I let seep in and suppurate during my initial dive a decade ago with each failed attempt at a return – that said, I cannot and will not deny the many life-changing opportunities – like my first book – and lifelong friendships that have been birthed from acquaintances started and fostered in the 140/280-ambient but, as Mr Dylan reminds us, in one’s evolution, inexorably, “the winds of changes shift” – (Side thought / psychological breakthrough: perhaps the preceeding caveat / apology which I always add to any discussion of Twitter is why I keep trying to make Twitter work for me anew. Attachment, attachment… )

Thus, I’ve found myself drawn back to Mastodon, mucking about in the federated ambient and sharing quotes by David Bowie and dog pictures. What I’ve found, so far, is not so much a fresh start or a tabula rasa, but a possible glimmer of that middle ground, a comfortable, intriguing chair with a leg that wobbles just a bit, situated in that hallowed valley between Informality and Newsletter (so far) devoid of that particularly self-inflicted boulder of perceived obligation in the name of justifying my chosen career path to myself. Put simply, Mastodon represents – to me, for now – another means of expression, like the Informalities and the Newsletter, though one devoid of the corrupting influence of a decade worth of self-inflicted and self-perpetuated gaining ideas and Frankensteined career paths; less a tossing out of the personal baggage/attachment I’ve carried for far too long but rather an attempt to try out another, different – not better, just different – carousel.

At least that’s what it is for now. As I said at the outset, all personal sentiments expressed here are subject to change; until then, you can find me fumbling about in the federated dark at @tylerweaver@mastodon.social.

(P.S. Amaroq is my preferred iOS Mastodon client.)

Selfish / Selfless

A conversation with a friend about justification in the creative life and a recurrent newsletter theme of talking to others about The Work has me thinking about balance – as I’m wont to do anyhow, but this at least gave me (more) words: taking/making the time for the solitude required for any self-directed creative undertaking is the ultimate manifestation of an essential selfishness – you are, as William Gibson (I think) once said (somewhere), creating something for the sole purpose of your conviction that it must exist; other responsibilities, life, family, dogs, cats, kids, friends, jobs, etc etc are the selfless flip side to the currency of The Work. The challenge is to strike a balance between the selfish and the selfless in which both can thrive in the midst of a constant war waged on the battleground of your mind, a war of attention in which the most potent weapon wielded by both combatants is guilt: detente in this theatre, then, requires a constant vigilance against imbalance to tune into a personal balance extant with the rhythm of the day, the rhythm of the work, of life (which is, as John Lennon tells us, what happens while you’re busy making other plans). Just a passing thought. As you were.

Status 11Dec2018

Currently: Lungs adjusting, finally, to the cold (in time for a warm-up?) of the day’s run as the pervasive ennui of midwestern winter strikes and everything looks and feels like a cemetery (especially the cemetery) amidst snowblind afterburn; trying new things here, same as the old things, though who knows what will come of them – not that it really matters anyhow.Reading: DROP CITY, by T.C. BoyleWatching: TRUE DETECTIVE, Season Two; SCHITT’S CREEK, Season FourPlaying: DISHONORED 2 (Emily playthrough since Corvo’s trapped in stone; that linking power is awesome); FORZA 4 (at least until the winter season is over on Thursday and I have to wait until my beloved fall and winter seasons return)Listening: Leonard Cohen, OLD IDEAS; Charlotte Gainsbourg, REST; Max Richter, MY BRILLIANT FRIEND soundtrack.

Eating Friction for Breakfast

Fond breakfast table memories of time spent with my grandparents each morning from 0700 to 0745, news on the TV, local newspaper on the table. Bacon. Eggs. Ever since, a desire to recapture that time with present iteration of morning routine, a desire kept at bay by worries of adverse effect on The Work by allowing the world / The Orange Malignancy to infect the day (at least before lunch).

While I’m not one to sing the praises of technological innovations designed to police our attention since it’s something we should be able to do ourselves, I have to give credit where credit’s due: Apple’s Screentime has added a necessary friction, a step between mindless tap and mindful perusal, that is helping me cultivate a similar 0700 breakfast table routine with as much of a single-task focus as allowed by eating and reading simultaneously: one at a time, “Ignore / Remind Me in 15 minutes”, WaPo, Economist, Reeder RSS (now incl. local newspaper – let’s make it as hard as possible to find an RSS feed, why don’t we?) everything else locked out: no email, no social media (not that I’m really there anyhow anymore, but that’s a ramble for another time), no games, etc.

A memory reborn anew (though sadly devoid of the smell of my grandmother’s kitchen), a cursory notion of the state of the world captured, blood sugar solid, dishes washed, dogs relieved and returned from the icy embrace of the out-of-doors, coffee finished: ScreenTime returns, one app at a time, in reverse, and I return to the Sanctum with fodder for the next bit of illegible journal processing so that I might get on with the single-task focus demanded by The Work at hand – though I did scribble this ramble.

Sanity-Saving, Post-Midterms

A moratorium on reading any and all books dealing with the drama, horror, and day-to-day incompetence of Orange Malignancy’s regime: though imperative that they be written, they offer me little depth (Tribe and Matz’s TO END A PRESIDENCY, a sobering look at historical and legal aspects of the impeachment process, being – so far – the only worthwhile exception) beyond the essential truth revealed daily in the endless stream of news (of which I am and forever will be an erstwhile devourer and supporter) and in the shallow waters of reality: that the Malignancy is an opportunistic, soul-sucking bigot who should never have become president and did so only by pouring gasoline on the flames of white resentment and exploiting the foundational weaknesses of social media as he, the least popular candidate in presidential polling history, ran / railed against the second most unpopular candidate in presidential polling history (who still won the popular vote) to an electoral college victory on a path cleared by an illicit campaign of influence (at the very least) manipulation by an equally resentful dictator / hotel gatekeeper and will continue – Robert Mueller won’t save us –  to shit on the office he bastardizes with each waking hour until we hand him, his cultish acolytes, and his enabling cronies a 2020 electoral drubbing – Robert Mueller won’t save us – the likes of which haven’t been seen since Mondale in ’84 and flush each and every one of them into the dark corner of history’s septic tank.

(I do, however, eagerly await the Coen Brothers’ film version (since they are the only ones who could do it justice, for want of a better word) of regime drama and incompetence which must – MUST – star Brendan Gleeson.)

DAREDEVIL, Season Three

Despite an agonizingly slow start that nearly lost me and an aesthetic that never quite reached the eye-opening grit of season one, the third – and now final – season of Netflix’s DAREDEVIL found, like its protagonist, redemption by returning to what worked: in being not a soulless component in a boring, brain-dead/ninja encapsulation of the worst proclivities of shared universes, but in being a cohesive, character-driven whole populated by real people who just happened to be stuck in the forgotten corner of a glistening superhero universe.

While I’d hoped to see Vanessa Fisk become even more of a deadly force than her incarcerated husband and what – if any – role Dex would play as her enforcer, the show left us with a fitting conclusion, both in the relationship between Matt, Foggy, and Karen, and in Matt’s ultimate defeat of Wilson Fisk (nameless, faceless ninjas will never replace Vincent D’Onofrino) in the black suit, a victory against not only a seemingly unbeatable goliath but, more importantly, an internal victory against the devil inside, a reawakening of a hero for a new tomorrow – a reawakening of Matthew Murdock.

A disappointment that it’s gone and that we may never know what might have been, but at least it wasn’t like the ending of TWIN PEAKS’s second season – nor should we lament that we were also granted a repreieve from the mouth-blood-in-a-puddle trope.

Waiting: Therapy (W)

(Solo) Telephone greeting on a human loop from behind sliding glass divider as though said greeting was an extension of her breath, a remarkable, relaxing consistency to the rhythm of her delivery: soundtrack to half-attentive perusal of ENTERTAINMENT WEEKLY back issue featuring a reunion photo of the BREAKING BAD cast (are we really that reunion-crazy that we now celebrate the reunion of shows that ended only four years ago?) and an effort to avoid falling into the organizational sensibilities and pastel embrace of REAL SIMPLE while I struggled to find a comfortable position in the pleather love seat which, in retrospect, may have been more my fault (physical manfestation of mental preparation for impending discussion of feelings and issues and such) than the love seat’s.

(Was there a painting of a duck above the pleather love seat? I can’t recall.)

As the loop continued, a lament for my freshly-cracked iPhone 6 and thoughts of asking my therapist for tape which were duly forgotten once the session started; eventually taped up phone at home so as to avoid Gorilla glass shards or whatever unbreakable breakable Apple used back then from digging into my face in the unfortunate event that I find myself actually talking on the phone… it will not go gentle into that good pavement; we will endure, still, together.

The Essentials: WORKING DAYS

Unvarnished and uncensored: in these journals, kept as “a marvelous method of calming me down,” during the writing of THE GRAPES OF WRATH, Steinbeck details the pain, resentment, self-doubt, and travails that plagued him as he embarked on a journey that resulted in one of the greatest novels of all time. It is a raw portrait of the writing life and of the war waged between the brain and the page, proof that it doesn’t get easier and that no matter the result, the war will always be the same.

*Note: this was first published as part of a complete list in installment 0010 of my bi-weekly newsletter; I’m planning to republish and expand that list here over the coming months.