A few words mustered on AHCA

A few words mustered on AHCA

I want to credit the journalists, academics, and my fellow healthcare providers who continue to write in this inhospitable-to-truths environment. I don’t know how you do it.

I’m hotter than a billy goat in a pepper patch. I can’t put it together. I can barely speak.

On this blog I’ve made the turn from facts to feelings in the last 100+ days, likely because facts seem to have suffered a fatal blow in this unrecognizable version of the world.

Here’s my feeling: I just left CancerCon (post in process), a group of many hundred sparkling, talented, mutually supportive young adults with cancer. Every last one of them contributing and (this is my bottom line) not any less human than before they got sick. THROUGH NO FAULT OF THEIR OWN. I’m one of those hundreds.

The Affordable Care Act was my civil rights legislation. Its “replacement” is the repeal of my and my legion of patients hard fought and nightly worried over civil rights. To adequate care. To freedom from unnecessary physical suffering and premature death and disability. Freedom from fear of sinking ourselves and those who love us into destitution to pay for our care. That’s all I have for now.

Am I less than my healthy counterpart? Is my humanity so easily disregarded by my country?

Trauma story

Trauma story

I just visited with a teacher friend who was telling me about his adamant opposition the the ad-hoc trauma counseling the public schools are asking teachers to perform on their at-risk students.

“First we have to sit in a big circle,” he tells me.

“Stop. No no no no sir. Not a circle. There is no safe place in a circle of peers.” I say.

Trauma is the flavor of the DSM V. Who isn’t talking about trauma? We’re all a bunch of traumatized zombies walking around, unstoppable force, inflicting and receiving trauma. Unable to zombie stumble ourselves into an effective treatment for our trauma on trauma on trauma.

Maybe trauma is the flavor of the century. This thing that was never really a thing in centuries past. Before, it was as inherent to living as breathing. Unremarkable. It starts to make itself known in the Western World after the great wars. Life settles, the middle class thrives, and a coherent nuclear family of two heterosexual parents and 2.5 kids emerges. Vaccines keep children from dying, sterile technique and antibiotics extend the lives of their parents. Union strength brings forth OSHA and safer workplaces, risky agricultural labor is given to 6-lane-highway sized air-conditioned combines, and the quagmire land wars in Asia make conscription a political nuh uh. The twentieth century American person is now safe. Safe enough for a man to concern himself with the perilous moments he has lived through. And now we live in enough comfort to reflect ourselves awake all night.

 

I’m flashing back to my greatest lesson in trauma. One I’ve written about before. Part of the advantage of having experienced the bulk of traumatic life events in short sequence as a full grown adult is your ability to remember them. Half of me records the events and their aftermath, the other experiences them. I’ll tell you my two big takeaways when it comes to managing life’s garbage:

  1. Trauma is not concrete. It is a thing perceived. You can live through an act of terror, loss of a loved one, life-threatening diagnosis, and come out the other side a well-adjusted and intact human. Maybe even more grateful, more god loving, closer to family, any positive thing. But like a kid with a skinned knee who doesn’t know to cry until he sees the panic on his mother’s face, being forced to re-tell your story to “debrief” or in crisis counseling may be the point at which you recast yourself in the role of traumatized person and become a victim to it. If people are fine, just let them be fine.
  2. People are excellent copers. Never take away a person’s coping mechanisms without their consent and a thought through plan to replace it. Clinically we categorize coping as either positive or negative. Positive: seeks assistance of family. Keeps journal. Exercises. Negative: Abuses drugs and alcohol. Isolates. Overindulges in TV. Doesn’t eat/eats too much. In real life, it’s usually a mixed bag. But either way–negative coping may be superior to no coping. No coping mechanisms threaten a victim’s survival.

The constellation of coping mechanisms put together by each person is unique. If they are maintaining a functional life, I think of their elements of coping as precariously balanced weights on branching wire arms, like a Calder mobile. Remove one element and you’ll destroy the whole delicately strung installation. Clinically, we’d call this decompensation.

My greatest public decompensation occurred in a literal circle of my closest friends at a mandatory mindfulness retreat in the very posh renovated barn/private events space owned by my prestigious southern university. For me, coping is dependent upon keeping my brain engaged in obsessive, hyper-vigilant work on 2-7 jobs or projects at a time. I also use humor and self-deprecation to be able to maintain a detachment from myself and others. (I’m a criterion D and E girl). The closer I am to my fear of dying, which is not lost on me as poetic and appropriate for a nurse, the harder I go into being a straight A student. I can box out the reliving of various death-sentences I’ve been handed by focusing on the esoteric, the academic, the political, the theoretical. Also, avoiding eye contact is key. Making eye contact is lethal. It is hard to deny your physical existence when you are eye to eye.

So the day of this retreat, waiting on a cancer diagnosis, knowing my marriage was caputskies, worrying about where the money for food would come from that week, the last thing I wanted to do was slow down. The last place I wanted to be was present in my mind.

I was barely through the authentic antique barn doors when I caught a picture of a patron of our University. Her bleached smile and tailored skirt-suit. The pearls. The goddamn real towel hand towel on the vanity beside the photo. The meditative music on the Bose surround. I decompensated. I started crying and kept it up all through silent yoga (drip, drip, drip, sniffle, mournful moan) slipping and sliding through my tear puddle on the rubbery mat. I stifled wails with the real towel hand towels in the bathroom. My psych prof asked me the mandatory question, “are you thinking about harming yourself.”

It took may face two days to return to baseline puffy.

Another salient point from my visiting teacher friend. One he got from a biology teacher in grade school: Species don’t occur in nature. Individuals do. I love a botanical metaphor so let’s work this one. What he was trying to impart, that I in my thirties and my friend a decade older are just now beginning to grasp, is that no individual tree or frog or dog meets all the criteria set for them in the key used to decode what species you is. They’re missing a whorl, they have additional spots, their eyes are too prominent. The the designation of species is arbitrary. The tree’s leaves curl under not over. It’s not wrong until you tell it so. We create a holotype to further our own scientific pursuits, which are noble and even useful at a population level, but the human experience can rarely be perfectly described by a text. Not even the DSM.

This failing to see the individual for the species problem is what makes the mandatory part of trauma counseling so worrisome. There are people in this world who do great work reading a person and healing them without the assistance of a marketed standardized trauma scoring system and matching intervention workbook. I’ve seen priests do it. I’ve seen wives do it for husbands, husbands for wives. Friends for each other. Parents and children. Strangers you meet on a train. Books. Poems. Singing.

The hubris to think you can heal trauma with a tool approved by science is so beautifully American. Intention so good, execution a mess, outcome pretty sad. Please give people the chance to manage themselves. Seek only to change behaviors that harm self or others. Never ask for a change without a replacement coping strategy. Move slow.

And never, ever make people sit in a circle.

In which a childhood friend’s hospital hardship pulls me up short.

In which a childhood friend’s hospital hardship pulls me up short.

Friday night at the hospital knocked me off this high horse I’ve ridden lately. I’ve been on a big patient advocacy, let me share my story jag. Despite feeling like I’ve had every experience possible in the U.S. health care system (and some in Canada, Mexico, and the Republic of California), I really haven’t. And I’ve walked the halls of the hospital where I work long enough to become unfeeling to a lot of the suffering. It’s human, it’s survival, I’m still disappointed.

After removing someone’s problematic accessory organs in the OR Friday night I got a message from a friend, someone I haven’t really known since childhood, saying her dad was sick and she was there. I regretted not checking my phone earlier. I had already changed out of my scrubs, so riding the staff elevators to her floor I knew I was going to get the reception of an after-hours visitor. Chilly. I tried to hold my name badge conspicuously, but surely enough there were all those familiar unwelcoming looks. The you better not be here to make trouble side-eye. The it’s too late for your kind of nonsense head shake. I have been the the side-eyer. The head shaker. Damn.

I really don’t understand how we fit all the furniture plus two very sick people in those tiny hospital rooms. Maneuvering in to visit is human tetris. I hug my friend, take off my glasses and squat down to see if her father remembers me through the 20+ years and the onset of dementia. He kindly says hello. Asks again about necessity of the IVs. The stay overnight.

It was hot. Heat rises. We were high up. I would be in a perpetual sweat when I worked that floor, but fool that I am assumed it was my constant motion. Families complained, and though I may have apologized for the inconvenience I quickly dismissed it. Sorry about the heat but right now I’m trying to stop you from bleeding out internally. There is a famous meme that I am now ashamed to admit to using like a mantra:

image-5571ba9223c84

Damn again.

I was there briefly, only long enough to say hello and I’m sorry. To steal a fan from my home unit. Those shoe box sized white electric fans are the only hospital commodity more stolen than pillows. Soon the tech was hefting my friend’s father up and off to the bathroom, shaming him for walking three feet on his own (NO ONE WALKS ALONE is a safety campaign at my hospital as well as an apocalyptic vision of the future). Physically keeping him cornered until he crawled safely back onto his bed, the only surface a patient may occupy. As a nurse I’ve done this too. DAMN DAMN.

I understand and have embodied nursing’s motives for the way we treat patients. There are so many and their needs so great. The gown and the industrial linens, the bedside commodes and 3+ identifying armbands that become a patient’s most significant identity dehumanize but serve a critically important end. Hospital survival. Name, allergy, fall risk. Limb alert. Anticoagulation. Difficult airway. Oh god what have I become.

My friend is like me, a woman working in the caring professions derived from the great Lillian Wald. She’s a pro. She gets it. Just before leaving I leaned across the narrow hospital bed, now safely occupied, held my friend’s hands and whispered to her. I’m sorry I can’t help you. This is why I became a nurse and not a social worker. This human stuff is too hard! She replied, “This is why I became a social worker and not a nurse. This hospital stuff is to hard!”

It is too hard. But heaven help me. I’ll try to do better.

 

 

I’m sorry about what I did when I thought I was dying! (Happy 3 years cancer free)

Good news, everyone! I still don’t have cancer.

Depression almost never lifts all at once. I carried around a $600 CD of images of my messed up guts for 5 days, knowing that even though I couldn’t fully interpret them they spelled out my imminent death. Then my oncologist who I would literally go into battle for floats into the room in sparkling white coat with halo around his beatific face like some renaissance painting and makes the sign of the cross and anoints my forehead with oil and says “You are cancer free my child, go with god and I’ll see you in six months.” WELL THAT IS DEPRESSION LIFTING ALL AT ONCE.

Do you know how much I want to live? SO much. And I am sorry about all the sullen things I said and did over the course of the last 4-ish weeks. I wasn’t even a little aware that I was preparing myself for terrible news.

Family members: I’m sorry I totally turned my back on you. I withdrew from you, I didn’t answer your call, your text. Child, I am so so sorry I tried to squeeze about a decade of yelling at you (parenting) into 3 weeks. That was unfair. You are a gracious and forgiving small human and I don’t know what I ever did right to have gotten you.

Friends: Man, I’m sorry about picking fights. Sending bizarre missives in the middle of the night like, “my drugs are broken” and “how much money do you think is necessary to go die in a bus in Saskatchewan?” and “how do I start an LLC?” All I can say is being somehow even darker and colder than the person you befriended was my way of losing you before I had to eternally lose you. I’m real sorry. I like you so much and I want to see you more.

Body: I haven’t taken you to the pool or to yoga for a month because, let’s be honest, I was really mad at you. I didn’t feed you much either. Everybody talks about cancer like it’s a thing that comes in from the outside. But we know that it’s your cells. It’s this nuked out shell of an immune system to blame. Forgive me, somehow you persist and divide despite the daily prednisone nuking! You clump of little ATP-run miracles! You deserve much better. We’ll go swimming then sit in the municipal sauna with the old naked ladies and I’ll make pizza crust from scratch next time.

Hygiene and cleanliness: Let’s just be thankful for scrub service. Also, I know what that person in the Guinness Book of World Records with those fingernails that go curling on to the ground felt like in the first month of that endeavor. I get how that happens now. My days as a carbon-based life form are numbered. The human race won’t even be around long enough warrant mention in geological time. Why should I care about my nails? Well I cut and polished all 20 within an hour of getting home from the doctor. I did all the laundry. Because I am not going to die.

Thank god. Thank god. Thank you god. I’ll keep all those promises I made for at least the next 4 months.

Excerpting some knowledge

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

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

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.