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”

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?

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.