Why out-of-control costs matter

Complexity. From how you get insurance (THREE MORE DAYS FOR MARKETPLACE PLANS) to who the emergency department treats to the non-communicating EMRs that create a chorus of fax tones ringing out across this great nation of over-paying under-served… well it ends like this: envelopes.

Cramming up your mailbox. Every medical service, every brick and mortar facility, every radiologist in his/her darkened bedroom reading films in memory foam slippers, is going to send to a separate bill. And this is why you still have a checkbook. Because even within the same organization, let’s say a fictional system called ANOVA that I visit for one scan, get 3 bills (physicians group, facility, and radiologist), then I go again in 3 months for the exact same thing. None of my six account numbers will be the same. Cram that in your electronic bill pay.

Here, loves, are my preventative health costs since October. Cancer screenings, with no expensive imaging like CT/MRI. Just doc visits, PAP pathology, and a radiology bill for who knows what that is? $12? I’m leaving out my $400 surprise colposcopy. But, VACCINE PLUG: get your son/daughter an HPV vaccine and the his girl/she may never know the surprise cervical pinch of colposcopy. It is a terrible thing to surprise a woman with. (I was too old, to not a virgin at 26 when vaccines became available).

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Don’t feel bad for me. Maybe set me up one of those gofundmesoIcanaffordfollowupcancersurveillanceandhaveayearlypapsinceI’msexuallyactive. Not a big draw on that?

Alright then. Just pay attention as policy, which people seem to be more averse to than illness itself, is being made. Taxes (for a few) may be losing their place on that short list of inevitability, but mortality my loves, endures.

Friendly neighborhood sick person weighs in on health care debate.

When I used to freak out about losing my health insurance/access to care, not being able to afford medicine, I always pictured my parents losing their house to pay my medical bills. It was the greatest loss imaginable. In the past months my catastrophizing has changed. Now, my mother won’t sell her home, cash out her retirement. I fantasize about dying from lack of care. If my cancer comes back, if I can’t keep my job, if I lose my insurance and I can’t afford to get treatment–I won’t seek care. I’ll die of my illness.

If anyone every told you I’m stubborn they weren’t lying. I indulge this fantasy of martyrdom to my hard-hearted country.

I need to express the psychic weight that the debate over who deserves what coverage burdens me with. Watching the monetary value of my continued American existence up for debate just a few miles from where I live. I cost healthy people too much. My debility or poverty disqualifies me, abdicates rights I thought were mine… life, liberty, something else… but yea, life. Not that.

In my hospital we have special education high school students working as volunteer helpers. Not everyone welcomes them. They are different people and require a slight adjustment in communication. They require accommodation.

They came to the hospital to work with assistance of a career coach and the support of our unit manager. They are kind and interesting, alike to most young people. Tremendously helpful, alike to most young people. Restocking supplies, lending a hand to grab a wheelchair or a drink for a patient, going to the waiting room to track down someone’s elderly family member who won’t answer a cell phone. They complete tasks that keep everyone in the unit moving forward. Days that I’m swamped, they keep me afloat.

The myth of the productive citizen baffles me. I’ve met a lot of people. Strangers coming out of anesthesia tell me dark secrets. No one conforms, not all the time. We are a big interdependent mess. To define productive and make it the measure of value is a terrible effing idea. This ideal of a completely independent working class American is at the core of the repulsive rhetoric I see daily.

What we are capable of is influenced by what we are told we are capable of. The political dialogue, a demoralizing debate over who is worthy of access to care, corrodes the potential of the precise people that have renewed American greatness again and again. The striving poor, immigrant, person of color, victim of circumstance. The young. Mounting arguments to deny the very poorest, the sickest, the youngest among us the scant safety net of Medicaid and strip us of legal protection to not be discriminated against due to sex and preexisting conditions, is undeniably passing judgement on who deserves healthcare. These groups of people, my people, have no chance to acquire health insurance without the protections set in place by Medicaid and the Affordable Care Act. To be without insurance is to be without access to care. The message is this: you are uncared for. To be perfectly clear, you are left for dead.

The health care debate is deeply personal. The abandonment of my cause, my cause being the pursuit of a productive and healthy life, by so many of my fellow Americans. My president, my representatives.

Since my diagnosis at age seventeen I kept my lupus a secret from most. A learned behavior from my father who shared the same diagnosis. He came of age in this country, a sick person in a time before the Americans with Disabilities Act. The fear of being found out, losing out on educational opportunities, jobs, insurance.

I lied on my college applications. I lied on my job applications. I’m not sure if you’ve noticed, but there is a box to check for “I may require reasonable accommodations” i.e.–I have a disability. NOPE. Nope. Per dad’s advice, cross that bridge if you come to it. You don’t need accommodation. You can pass. I can pass for healthy. I’ve never had trouble getting a job.

But I was ashamed. Sneaking around in the shadows will do that to a body. Fearful of being judged as burdensome. A waste of the world’s resources.

To experience the birth of the Affordable Care Act and its protections after a labor so long and fraught was elation. Immense validation. I was hearing from the highest office in the land that my worth, my potential, was not degraded by chronic illness. It’s no coincidence that it was in those heady days I returned to school and became a nurse. I chose a challenging career in a field of service. I was pushed, encouraged to dedicate myself to progress personal and political. In no small part because of the leaders of my country put all the chips on the table to codify the belief that health care is a human right.

Since the ACA passed, I’ve checked the “accommodations” box. When I go to an appointment, I don’t lie. My coworkers no longer think I am hitting the dentist’s office monthly. I can pass, but I need everyone to know what a disability looks like. Which is, in my opinion, human. The messages that came from President Obama, from my representation, from advocacy groups all over the land made me feel like it was okay to exist as I am.

Permission to exist is a powerful thing. It isn’t hyperbole to say that the Affordable Care Act is my own civil rights legislation.

It despairs me to hang on as the pendulum swings against it. But hold on, it matters. Keep saying it, no matter how ridiculous it feels to say, children and women and the sick and the elderly all deserve equal protection under the law. Our nation, and me, well… our lives depend on it.

PS- Somebody make me a bumper sticker that says “KEEP YOUR HANDS OFF MY OBAMACARE”

Oliver Sacks and the loneliness of a great humanitarian doctor.

In my long season of heartbreak and loneliness I once more look for a friend. I’m riding the tide of what Freud (who may have been wrong about everything but was also right about everything) called melancholia. Cognitive behaviorists might call it a slew of distortions.

In truth, I’ve many beautiful friends. Who show up. Clean the fridge in my new apartment. Set up my living room. Pour wine spritzers and sit on the deck and roll eyes at our happy, healthy, wrestling children.

So why this aching loneliness that just won’t quit? I fall in love with strangers four times a day. A quirky gesture, a turn of phrase, a graceful gait. That’s all it takes. But it’s unrequited; this sublimated love that has no real grit… maybe that’s what I can muster. Love that can’t be returned and will never be rejected. It’s utterly secret.

I’m in love with the world and my life in it. I’ll sound dramatic (no surprise) but every small accomplishment, every trip I take or task I finish I feel as though I’ve snatched it out from the maw of death. Ha! You can’t take it away now, I’ve lived it! I’ve moon gazed in the pouring rain with bare feet on steaming asphalt. I’ve eaten just-picked berries! I’ve smoothed the hair of my fluish child until he slept in my arms. It’s mine forever infernal eternity.

As is often the case, the right book finds me. I’m reading Oliver Sack’s memoir, On the Move. The fates saved it for the exact right moment. Oliver was not at all like me demographically. He was not like me in temperament. But we share two characteristics that buoy me when I feel low. First, the treatment of medical science as a humanity. Medicine as observation and experimentation in bettering our human existence. It indulges curiosity and regards no dogma in pursuit of understanding, helping, and healing.

Second, a protective self-enforced loneliness. Oliver was uniquely capable in his role as benevolent understander and wizened healer because of the isolation in which he held himself. Hundreds of close friends, thousands of adoring colleagues, tens of thousands of grateful patients, millions of entranced readers, but almost zero binding couple or familial loves in his life. However, I can attest: the grey tedium of monk-like living makes the wider world explosive with color, intrigue, stories to be learned, mysteries to solve, and hallucinations to manifest. That, I suppose, is the trade off.

I take heart that a mind so bright and wide walked the earth. If over the course of my life I manage one one-hundredth of his cleverness, curiosity, tender care of the sick, and generous story telling I would happily suffer an existence one hundred times as lonely.

Be mesmerized by one of his last interviews and storytelling sessions.

This is the gratitude I find at the bottom of the I’m feeling sorry for myself well. It is great and deep and sustaining.

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.

Valentine’s for broken hearts

There is this utterly sensible trend in health care where the providers of the highest acuity care seem to have the least first hand experience as patients. The first time a coworker commented “Sometimes I wish I’d been in the hospital so I’d know what having an IV placed felt like,” I was flabbergasted. Are there adult people that have avoided IV sticks? Yes, many. It makes sense that my colleagues are largely younger and healthier people, considering how tough the gig is on a body. Poor sleep habits, stress, inflexible schedules, repetitive back wrenching… it’s in the job description. But this lack of direct experience opens an even wider gap of understanding between provider and patient. They have no shared medical experiences. And medical experiences aren’t about the pain of the IV stick. It’s the subordination to your providers, a previously robust identity reduced to your name and birth date on your bracelet (plus fall risk meaning now you can’t even toilet yourself). How people cope with what we take away from them defines what kind of patient they appear to be.

So on this Valentine’s Day, Galentines for my feminist warriors, day of grumpiferous mourning for me, a tweet from Lucy Kalanithi reminded me to urge all health care people to read Paul Kalanithi’s When Breath Becomes Air. In this memoir Paul is able to recount in what feels like real time losing his identity as a promising neurosurgeon to cancer. His doctor self gives way and he becomes the patient. Being previously a young and healthy person, and falling victim to the trick all healthy people play on themselves (the way I am now is the way I will always be), his realization that his is terribly ill is heartbreaking. The chapter in which he discusses his scientific mind’s understanding of survival curves, trying to square the data with his individual, not-yet-a-statistic mortality, it rings so bitterly true.

Here is Lucy Kalanithi’s beautiful valentine to him. It speaks to living with loss. If you’re on twitter follow her post haste (@rocketgirlmd).

What Lucy says about grief and loss…blarg my heart. We have been a house in mourning for the past 14 months. My mother lost her true love and partner. I lost my father. I sometimes feel like I killed my father since it was my chest compressions that sent him out of this world, but that’s another post. If dad were here this February 14th I sure as shit would be sitting as his feet complaining about the quality of available suitors while he half listened until I wound myself down, then I’d get a “you’re fine sweetie girl”and a pat on the back and I would be fine. And he and mom would watch garbage TV and laugh at really stupid jokes and drink wine out of tumblers and genuinely enjoy one another.

In remembrance of the love between my parents I’m attaching my eulogy. All of us Crawfords were so lucky to get so very much of him.

So to bring it on back health care people of the world, depending on the statistics you go by we are somewhere between 60-80% likely to have someone’s loved one in our care as their life ends. Think about what it felt like to be Paul, what it feels like to be Lucy when someone asks to bring their baby into the ICU. Or tapes pictures all over the walls. Or changes their mind about end of life care 16 times. People often need guidance, and we can draw from training and experience to offer it. Maybe what has happened in your own life, or a book you read, is helpful. Keep that. Get rid of the rest. Like I said at the beginning: It’s a tough gig.

I got Obamacare 

No big story here. I got myself some Obamacare.

Except this is a life changing event for little-old lupus having me who in my early 20s could not imagine a day when I was not somebody’s full time employee and/or spouse. I feel like some dependent wife in the fifties who needed her husband’s signature to get money out of the bank–and now I’ve got my own account! I get to make my own choices and I get to pay for them. Jerks.

Since the age of 18, I’ve lived my life according to where I can find health insurance next. A pre-existing condition meant that if I did try to buy coverage prior to the ACA I would be shown the door. Just like trying to buy life insurance: nothing, at no price, was on offer. I’ve kept jobs I hated and made major relationship choices with fear of dying from lack of health care in the back of my mind.

Sounds dramatic! But it’s also true. I function pretty healthily as a productive part of a family and economy as long as I have access to specialists and medications. This primary level care keeps my organs functioning with regular blood tests, cheap prescription drugs, expert medical advice, and the will of fate. Without it I would pretty likely begin to lose major organ function and become disabled, a net negative as I relied on social security disability, then after that absurd waiting period (during which let’s say I develop end stage renal disease requiring dialysis), draw heavy on Medicare and Medicaid for tertiary level care. I have a dependent too, so add in my scant but still worth mention social safety net benefits. Let’s be honest, with ESRD and a not-hot candidacy for transplant I’ll probably be dead in 5 to 10 years, leaving social security to pay them death benefits to my child.

Grim! And I’m keeping it purely economic. There are people who would miss me and I don’t want to be disabled and for sure am afraid of dying young.

So back to my Obamacare. I bought coverage this week. I will get to see the people I need for this next insurance cycle! The site only crashed 4 times! $450 a month covers me and the wee one. I’m getting a chance to try my hand at freelancing. I. Am. So. Thrilled. (I’m still in working in the hospital, just not in a position that offers benefits) The threats of repeal feel like real violence against anyone with a pre-existing condition. They also motivated me to take the leap while the net was still intact.

I try to keep it clean most of the time but given his flippant threat to my life I’d like to say fuck you to Tom Price. ✌️

Emergency Landing.

Almost a month and no posts?! My rants have been diverted into papers for a phenomenal policy course I am taking this semester and my links to articles aren’t making it past a retweet.

So here’s my word picture for you: I am emergency landing an Airbus A320 containing all of my adult life on the Hudson River. We hope to hit the water and begin evacuation in late April. And yes, in this metaphor I am Captain Sully and when I nail this I will get to go back in time and sit on the stage for the first inauguration of President Barack Obama.

School is boiling me alive by degree, I’m selling my house, separating from my husband, searching for a first job, squeezing in an MRI here and a trip to NIH there, and hoping it all settles out in time to give my beautiful kid a fun summer break of swimming pools and tee ball before starting kindergarten at a (please God let it be halfway decent) school. See how I used the capital “G” there? That’s right people, there are no no-job-no-home-no-partner having atheists trying to finish nursing school. We’s back on speaking terms, me and Gosh and Jeepers.

But seriously, forgive me my absence. I’ll post some of my writing from class as it applies. Please let it be my belly that hits the water.

EDIT:
My mom has informed me that this metaphor makes no sense. What I’m trying to say is there was a whole series of things I was depending on to bring the end of my career as a student in for a safe landing: a stable household (selling house), a stable income and health insurance (partner leaving and I ain’t got a job), and a plan for school, friends, and recreation for my kid. So let’s think of that stuff as the runway, the landing gear, various instruments… without it I’m depending on my wits, experience, not passing out, and I guess the Hudson would be my parent’s basement.

An inscrutable brand of optimism and another poem.

This year: some victories and some defeats, human race. But we are brave and we adapt. We recycle our garbage. We try again.

And if that doesn’t do it for you then know inevitably just like every dominant species before, eventually we’ll be gone. This beautiful blue marble will subsume us and our refuse and something new will get a few spins around the sun. (Then the sun will turn into a red giant and then a white dwarf I think and things kinda fall apart? Don’t worry we’ll all be dead.)

YES I AM an optimist. Don’t give me a hard time.

Between the time that I knew I had melanoma with not great survival statistics and my first surgery (a few weeks nearly a year ago) I would do some yoga every night and lay in corpse pose and think about dying. The uncoupling of my molecules and rearranging of my atoms and how that would be a good way to stay on in this world. I’m not gone I’m just different.

Weird mantra, right? Weird times. And I do believe it, the conservation of matter. I’m a gardener (though looking upon my gardens would make Martha Stewart throw up). Composting is a feature of life here and using it as a metaphor for purification and renewal scratches an itch. This is more a spring poem, but here it is in the spirit of the renewing the year.

Excerpt from Walt Whitman’s Leaves of Grass, “This Compost

3.
Now I am terrified at the Earth, it is that calm and patient,
It grows such sweet things out of such corruptions,
It turns harmless and stainless on its axis, with such endless successions of diseas’d corpses,
It distills such exquisite winds out of such infused fetor,
It renews with such unwitting looks its prodigal, annual, sumptuous crops,
It gives such divine materials to men, and accepts such leavings from them at last.