Excerpting some knowledge

Y’all notice there is a biannual rhythm to me getting super poetic? The specter of cancer reappears in the form of 6 month surveillance scans. I get real weird. I imagine for some people its prayer, and sure I go there too, but for the most part my appeal to a higher power is poetry. Poetry and a few totally wrecked looking novels.

This scan around I’ve got some questionable results. So as saddle up for another ride in the wild world of oncology I have the voice of my favorite author ringing in my ear. He’s saying:

“Make sure,” “be prepared,” plan out every endeavor.
Like a scout on the stupidest camping trip ever.

If New York City is in the east, David Rakoff was the sun. When he died I mourned selfishly. Who will take this world full of sads and uglies and make it beautiful for me? Great writers are all guilty of this, I know, but I felt like David was mine. He took my tangle of fears and loves and laid them out in all of their transcendent beauty and absurd anxieties. God damn I miss him.

Here’s the excerpt I’ve memorized from the his final novel “Love, Dishonor, Marry, Die, Cherish, Perish: A Novel (by David Rakoff) written in the last year of his life and recorded in the last month. If your tear ducts need flushing and you could use a belly laugh, consider listening to him read it. It’s entirely in AABB verse. Anyway, superlative, superlative, superlative. This section is about the character Cliff who is now dying of AIDS. It’s beautiful, it’s sad, it’s darkly hilarious, it’s exactly what David was to me.

It was sadness that gripped him, far more than the fear
That, if facing the truth, he had maybe a year.
When poetic phrases like “eyes, look your last”
Become true, all you want is to stay, to hold fast.
A new, fierce attachment to all of this world
Now pierced him, it stabbed like a deity-hurled
Lightning bolt lancing him, sent from above,
Left him giddy and tearful. It felt like young love.
He’d thought of himself as uniquely proficient
At seeing, but now that sense felt insufficient.
He wanted to grab, to possess, to devour
To eat with his eyes, how he needed that power.

But, just like a child whose big gun is a stick,
Cliff was now harmless, he’d gotten too sick
To take any action beyond rudimentary
Routines that had shrunk to the most elementary:
Which pill to take now, and where is your sweater?
Did the Immodium make you feel better?
Study your shit to make sure you’d not bled,
Make sure the Kleenex is next to the bed.
“Make sure,” “be prepared,” plan out every endeavor
Like a scout on the stupidest camping trip ever.
The facts were now harder, reality colder
His parasol no match for that falling boulder.
And so the concern with the trivial issues:
Slippers nearby and the proximate tissues
He thought of those two things in life that don’t vary
(Well, thought only glancingly; more was too scary)
Inevitable, why even bother to test it,
He’d paid all his taxes, so that left… you guessed it.

Great achievements in public funding

This past couple of weeks have worn us health policy people down to sad little nubs. In this climate, where cruel and wildly irrational plans are proposed then taken for serious, scored and picked apart by award winning economists…Well it’s no impossible task to pull some data together showing in fact old people do deserve food and disabled children deserve health care. Mounting a well reasoned, sound argument against such insane hypocrisy is indeed possible, but exhausting and futile. Crazy doesn’t listen.

So where are we then? I’m at a loss of how to write about any of the proposed cuts, the losses in insurance coverage for the most in need. Maybe I’m overworked and underfed and teetering on the edge of freaking the freak out but I can’t bring myself to mount a statistical argument for basic human rights.

So I’m going to tell a story instead.

It was the late 1950s and everything was in black and white. A little boy who had been born a surprise was eight years old in Phoenix, Arizona. His early memories of horseback riding in the desert with his two older brothers were of always, always getting the donkey. He swam like a fish. He liked science and had a microscope with real glass slides. He had a nickname whose existence he would, after escaping to college, refuse to speak of (it was Kelly).

The boy was the baby in a family whose two oldest had already fled the troubled scene. He was a native born go along to get along. When the joints in his hands became hot and painful, he didn’t mention it. For some unknowable amount of weeks he would struggle to turn door knobs, button his dungarees, and comb his Beaver Cleaver side part. Finally, unobtrusive Kelly had to ask his mother to help him turn on the water for his bath, his hands stubbornly refusing to form a grip.

He was shopped around from doctor to doctor in the desert town. A number of perplexed specialists later my father was referred to The National Institutes of Health in Bethesda, Maryland. He was all wrong for his diagnosis. Lupus presents in women, not men. In adults, not children. All the same he was enrolled at NIH and became a patient at the Clinical Center. Without prior cases for reference, his initial life expectancy was in the range of months.

Lupus and its treatment took a toll him. At high doses the steroid bloating turned him unrecognizably moon-faced. It robbed him of physical growth. He’d never catch up to his sister and brothers, all between 6′ and 6’5″. But in defiance of his early death sentence and thanks to that Ellis Island of medicine that took him in the little boy would go on to live for months, then years, decades, and into the better part of a century. And NIH would have one hell of a longitudinal case study.

The boy went back to Catholic school where he practiced disruptive anti-authoritarian behaviors on the Sisters. He survived college despite a heavy smoking habit and special trick of putting out his cigarettes by balancing them on their filter end and waiting for them to burn themselves out. He went to work in Washington, DC and happily complied with the dress code by wearing a comically wide tie that fell several inches above his belly button. Beating the greatest odds since that childhood diagnosis, he found the woman who would be my mother and they fell in love. Exactly halfway through his medical miracle life I was born. Over the next years came my brother and my sister.

NIH saved my family by saving my father as a child. They did it again forty years later when as a teen I was diagnosed with lupus, too. A decade after that they were the ones who had funded the studies and knew the science and armed me with the best possible interventions as I ran the gauntlet of the first generation of women to attempt lupus pregnancy. I had a healthy son.

They have all of my gratitude and admiration, several hundred gallons of my blood, and the full sequence of my DNA. I owe them way more.

Thus endeth the story.

My fierce loyalty to the NIH is not only about the comprehensive care of the Clinical Center or the heroic research. Rather, I’m loyal to this national institution dedicated to protecting public health and lessening the burden of human suffering and disease. The clinicians and scientists who make NIH their life’s work are the smartest people in the world (I say WORLD because they’ve come from all over the planet to be here). Even more stunning, they are giving their gifts to public service. I don’t believe that I am entirely naive in saying the greatest dividends on investment in NIH are contributions to the welfare of human kind. Sure, I could put a number on this. But I told you I’m not doing statistics today.

PS- Sometimes I sit in the NIH cafeteria and pretend to read a book while listening to you geniuses talk about your work. Star. Struck.

Last week in health care

As far as health news for Americans last week was, much like a circus fire, INTENSE. Here in the Capital “Thunder” Dome there was the braying of donkeys, the stampeding of elephants, the crunching sound of every member of the health care community beating their skulls against the walls, and the immense heat of electronic devices tripping breakers over and over as the grid (and I, via bourbon) experienced rolling blackouts.

I stayed up late and got up early and skipped all my meals in an attempt to stay current, but unlike our president I will not make assertions that that means I’m functioning. Hm, maybe he’s just tired and cranky?

Things of importance from this week:

#1 Healthcare Triage short video on understanding the AHCA. You can see that Aaron Carroll is about 85% of the way to his breaking point here. And good god there were still two more days to go in the week.

#2 Paul Ryan shows he’s a bit shaky on what insurance is (we all pay for fire insurance so that if you have the terrible fortune of your house catching on fire, you are not financially devastated). BUT MR. RYAN WHY SHOULD I BUY FIRE INSURANCE WHEN MY HOUSE IS NOT AT PRESENT ON FIRE?

#2 Emma Sandoe, quickly becoming my favorite voice on the internet, expert in Medicaid, with this tweet (Poor people were once human people like me? No…)

https://twitter.com/emma_sandoe/status/839877905882759168

#3 In response to the question: what mandates do the Republicans object to? “Men paying for prenatal care.” Buh..uh..wha..wait. Since no man has ever been born or engaged in an act that might conceive a child.

#4 The AMA, ANA, AHA, and any lobbying association representing direct patient care declare the American Health Care Act to be one hot unsustainable mess. For the uninitiated, this is lions laying with lambs stuff. The orgs are not friends, and we seem to be arguing into a void at this point.

#5 The Washington Post editorial section posts a satire that would make Alexander Pope holler “SWEET BURN” in his grave. Per the Dems response to the AHCA:

“Mr. Gorbachev,” as Reagan so stirringly said, “This wall desperately needs revision.”

#6 Our collective desire to continue living is affirmed by a BBC Asia expert in his home office in Korea when his children pull back that hollow-core door veneer that keeps us believing that what we say and do is suit-and-tie worthy and crucial to the survival of humanity. From his IDAF toddler in her you’re-not-going-to-miss-this-dance yellow shirt to the younger sibling in the most successful comedy vehicle since the American Pie movies. It had to be the mom, btw. That was a woman bolting off the toilet to save her family.

Cheers to this week! Hope you’re well rested.

 

International Woman’s Day II: A DAY WITHOUT A WOMAN

I’m punchy today.

I’m cheering on the Alexandria City Public School teachers for shutting it down. Go on with your bad selves, and thousands of VIP parents now have to figure out who’s going to take care of their kids while they make dollars. Disrupt the system.

As for me, I’m working. I’ve got no-union and a no-call-out job, I support a child with my income, and I think we’re discovering the layers to this problem.

BUT MOST IMPORTANTLY here’s what I’ll keep in my head today: Pasteur through Lister, god rest their man-souls, get the credit for the discovery of germ theory which is the foundation of the science behind the successes of modern medicine. This happened between the 1860s and the 1900s. Yes it arrived later in America because we are refractory to evidence, I digress… In 1854 FLORENCE “MY QUEEN” NIGHTINGALE was saving thousands of lives by cleaning up the literal shit. Check this piece out, and beware the unfortunate typo–it’s 1854, not 1954. Blockheads.

The soldiers were poorly cared for, medicines and other essentials were in short supply, hygiene was neglected, and infections were rampant. Nightingale found there was no clean linen; the clothes of the soldiers were swarming with bugs, lice, and fleas; the floors, walls, and ceilings were filthy; and rats were hiding under the beds.1 There were no towels, basins, or soap, and only 14 baths for approximately 2000 soldiers. The death count was the highest of all hospitals in the region. One of Nightingale’s first purchases was of 200 Turkish towels; she later provided an enormous supply of clean shirts, plenty of soap, and such necessities as plates, knives, and forks, cups and glasses. Nightingale believed the main problems were diet, dirt, and drains—she brought food from England, cleaned up the kitchens, and set her nurses to cleaning up the hospital wards. A Sanitary Commission, sent by the British government, arrived to flush out the sewers and improve ventilation.

So keep talking about the end of the world. I’m going to be with every other person called woman getting it done.

ALSO: Florence freaking invented data science and was a persuasive and prolific writer who though she was practically housebound in later years changed the GD world from her desk. *Spikes football*