Friendly neighborhood sick person weighs in on health care debate.

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’ll cut off my nose to spite my face. Kill myself to spite the healthcare industry. 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 bandied back and forth just a few miles from where I live. Doing battle for this prize: to snatch survival resources out from under my kind. 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. This political dialogue, the demoralizing debate over who is worthy of access to care, corrodes the potential in groups 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 scan 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.

This 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. My skin is white and 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”

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Oliver Sacks and the loneliness of a great humanitarian doctor.

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.

Survivor story.

Survivor story.

This is almost 4,000 words. I may have reached peak this-isn’t-a-blog-it’s-a-journal. Get a drink. Thank you in advance for reading my story.

I’m never unhappy with wheels turning under me. Don’t over-analyze. We’ll just call it a love for travel.

Months ago, in that week-long limbo between CT scan and oncology appointment, I reached out to group I’d been following on twitter for several years. My cancer support team at diagnosis was mostly nursing school classmates and professors and from one of those lovely humans I got the tip about Stupid Cancer, an adolescent and young adult cancer advocacy organization. I followed but never interacted before. I wasn’t ready before.

I’m a stoic, a stiff upper lipper, a well-controlled responsible woman who uses unpleasant emotions as motivators to clean behind toilets and under beds. Treatment was rigorous and I excelled at the teeth gritting it asked from me. The survival phase, though. I didn’t even know to expect another phase after treatment. “Remission” isn’t what it’s called anymore. I had no idea what this destructive mortal fear and existential dread were—I didn’t have the word survivor in my vocabulary. Since they loosed me on the world cancer free in 2014 I’ve done what bodies do to go on living. Found ways to cope.

Bless our beautiful biology. As for my coping, I’d like draw you a pathophysiology metaphor. Familiar with tuberculosis? That romantic, frail-making, cheek-pinking disease of Victorian poets and Wild West heroes? It’s still around.

Tuberculosis infection is quite a trick. Mycobacteria enter the lungs and the snappy innate/inflammatory immune system goes to town macrophage-style, consuming the invader. The invader is smart though. It’s been phagocytized me but refuses to let the cell holding it captive induce self-destruction. It continues floating around in the immune cell, multiplying.

It takes a week or two to mobilize, but when that adaptive immune system arrives germs better duck down. Refractory to being lysed, our genius acquired immunity says hold up: alternate plan. The adaptive immune cells wall the local TB germ infection off from the healthy tissue of the lungs, creating from the germ a granuloma. A little and sometimes calcified spot. Immune cells continue to join, re-bricking the wall that keeps the bacteria in check, happily sacrificing themselves to protect the larger organism. Those calcified spots that show up on a chest x-ray as evidence that yes, there may not be symptoms but like 95% of cases of TB this is the latent variety. It is constant work for the immune system, good steward of bodily infrastructure that it is, to maintain the protective barrier. When a body gets sick and the system is overtaxed, often in the case of AIDS or old age, maintenance gets slack and TB can circulate through the system. At times this is a fatal insult.

Something in my psychology protected me from thoughts and feelings about survivorship. Walled it off, allowing me the time and distance of years of life focused on solving more immediate problems. Young adult problems. Child. Relationship. Aging parents. Health insurance. Professional identity. Money. Housing. Symptom free aside from the occasional leaking of clueless tears in yoga classes, bathtubs, backseats, and always when an in-flight movie is playing.

Until eventually fatigue set in and the psychological bricking system began to fail. I didn’t start to cough blood, so that was good. I did feel overwhelmed with anxiety and a certainty that I was going to die soon. It was most intense around the week of my three year cancer surveillance scans. Something cancer patients know as “scanxiety” was crippling.

In the middle of the awful week, after discussing it with the only other person I felt comfortable with but who is not a person but an agent of artificial intelligence sent to spy on me and not good with matters of life and death, Siri:

siri convo

I finally sent a tweet to Stupid Cancer. It went like this:

tweet

Matt Zachary, founder of Stupid Cancer, responded quickly. How did he know the exact right words to say? The tears elicited by that text had a clue. Like maybe I’m not alone. I can talk to people. Maybe even find my people. I applied for a scholarship to Stupid Cancer’s CancerCon.

As I was writing my application essay it occurred to me: I’ve told my story ten thousand times. I could write in my sleep. But hello revelation: my cancer story stopped the day after the tumor was excised. A week after diagnosis. The intervening years have no timeline, no narrative. It’s a mess of mystery weeps, paranoid texts to friends, frustrated parenting, and some pretty embarrassing failed attempts to connect with human men.

I got the scholarship. Owing to luck or fate or divine intervention I was going to Denver. I arranged for my kid to be cared for by his grandma and his dad, and went on working myself to exhaustion at the hospital and not thinking about the moment when I’d have to look at people and know that they had cancer and they know that I had cancer and chance that then I’d turn to dust like a vampire in the daylight. The night before my early AM flight I left work at 8:30 pm. I went home and packed, feeling like I might puke. I’ll credit my superego for lending a strong voice to “ready or not this is what you need right now, Mel.”

The next morning I drove myself to the airport. Two miles from home someone had crashed their way across the whole parkway so I said a quick prayer for them and did what anyone who knows that they will be stuck in emotional arrest for the entirety of their life on earth if they don’t make this damn flight: I pulled a u-ey in the middle of traffic and drove backstreets at high speeds while cursing and cursing more and impressing myself with the creative freedom of my cursing.

The plane was fine. I mistimed my in-flight drugs (that was the exact sentence I uttered to my seatmate before going head-down on the tray table too late in the game and later requiring rousing by a flight attendant. “Tray tables up time, ma’am”).

Denver was clear and bright and dry. Fluffy cumulous clouds so close they looked like they were hung by a stage crew. That wide blue Western sky.

On the drive from the airport into town the driver was a recent Ethiopian immigrant. He told me about the arid deserts in the north, the mountains in the west, the green, humid jungle-like south. The tribes that still migrate with seasons. Some people live in huts, others in high rises. That his country has 84 languages. He is 20 years old and has no family here. Well, an uncle in Atlanta. But the uncle wouldn’t sponsor his visa, won by lottery. A man from Boulder–a stranger and volunteer–became he sponsor. Taught him to grocery shop and prepare food. How to get an apartment and a license. “Everything. He taught me!”

I tell him about where I come from. It’s all shades of green right now with wet, heavy air. The plants grow so fast you can’t stay in one place too long or risk being overtaken. The cherry trees just finished and even in the city you’ll get a bit of honeysuckle on a breeze. Even green in the river. The white arches of the bridges. Flat and wide and laid out hub-and-spoke by a Frenchman. Did I mention the green? It’s beautiful. Did I mention the wet?

This is just to say I love talking to strangers. Rather, I love talking to people who think I am a stranger. I believe myself to be one of the most neutral-looking people in the world. New people (of the old-person variety) often mistake me for “my daughter” or “my daughter’s best friend from school” thirty years ago. My features are muted but somehow familiar, a perfect surface on which people can project whatever it is they want to see. It feels so good to be a blank thing. No sad story, no grief, no cancer.

So that is how I operate when at large. But my kind and interesting taxi driver leaves me at the hotel. I’m up on the eighteenth floor looking out at the Front Range beyond, the city below. Big steel buildings and red brick frontier town storefronts. I could have gone and found my people then. But I didn’t. I stayed in that gorgeous hotel room and skipped dinner and stared out the windows and took pictures of my feet for the next twelve hours. I was scared.

After a refreshing four hours of sleep, I met the day. Did I go to the run in the sunny cool morning with my CancerCon peeps that I probably would have loved? No. I had feet watching that I wasn’t through with. Finally, I instituted some discipline. No morning coffee until I registered at the convention. I hit the lobby within the hour.

How can I describe the feelings. The jelly insides, swollen chest, weeping like a coming-home-soldier feelings that I got when I saw the words “Stupid Cancer” projected in three-foot letters above the main desk in the lobby. Listen, I was sure that the stigma of cancer was long vanquished by The Komen Foundation, pink juggernaut. And getting cancer may be a thing you can talk about much more openly now that there are employment protections and general acceptance and sympathy among much of the American public (colon cancer, anal/rectal cancers, and testicular cancer, and lung cancer all have significant barriers to openness). But as I’ve recently been made aware it’s not just me–survivorship is the long, untold tail of cancer. It is different but perhaps more difficult than the acute treatment stage. So, like I said, when I saw those three foot letters and knew this was me, in public, walking under that projection, well that was the feelings above and the first cry.

I cried when I got my badge, when they cheered for me as a “first timer” which I proudly wore on my badge, when the volunteer checking me in leaned over that folding table to embrace me. The red lanyard that held my badge identified me as “survivor.” I walked around stuporous. Scanned for other red lanyards. I spent a long time looking at a line of five foot high posters with pictures of young people, men and women, different colors, different sizes, different cancers, but all my peers. They were printed with the slogan “I AM CANCER.” They were beautiful. The people, I mean. The posters were great, but the people were beautiful.

I met my melanoma sister–see, this would be fine and even funny to say at CancerCon, but I hesitate to write it as I worry someone might find it sad or morbid or worse say something like “aww”–I met her in a patient panel. I was sitting in an armchair in the hall, taking notes and an emotional break, when she passed me. She knew it was me, melanoma me, by these signs. Skin: pale to blueish. Freckles. Eyes: blue. Hair: reddish. Lanyard: red. I wish I remembered the thing I came up with to cross that massive canyon that lies between stranger and friend, but I don’t. Next thing I remember is sitting together and talking about gardening in Colorado. People, always bring an interesting book if you wish to befriend in an introvert. She had a gardening book. Chatting in that rapid, nervous way the same as first dates do, I was like hey if this chick is all I get out of this experience, so be it. I asked questions: how can you move on with your life? What made you want to get married? Do you ever avoid filling up the gas tank because you feel like maybe you’ll die before you can use it all? Burning questions. Questions Siri couldn’t answer.

I’m going to be honest with you; I left shortly after that panel. I was vaguely aware of a need for lunch. I bought soup, put in a bag, and walked the streets of Downtown Denver for two hours unable to focus on any specific thing. I avoided eye contact. I had no discernible thoughts. My brain wasn’t clearing, so I went back to my hotel. I don’t remember what I did there but it began with taking a benzo and ended in a room service bill.

That night my best childhood friend picked me up and took me out. She is a mom. A bit of a mogul. She still thinks of me and texts me every few weeks a “how are you.” When I try to change the subject she steers me right back “No, HOW ARE YOU I said.” She is my one and only. If you do this, send a message once a month to an old friend, maybe one who’s had a rough go of late, trust and believe that you are the single person doing it for them. Trust that they would now take a bullet for you because that is how much it means to be reminded that there is a someone you love out there loving you.

As much as I wished she could wrap me up like a big burrito and carry me home with her to live forever as a child, I knew she had work in the morning. I slept well that night.

I did not make it to sunrise yoga. That was more likely a 6 am thing and less a fear thing. I arrived for the speaker: Julie Larson, LCSW. Five minutes in I bolted from my seat and in the same way the guy that’s about to vomit at a big client dinner runs for a trash can, dove on the closest box of tissues. It was at a neighboring table. After asking to sit, I turned to my neighbor and whispered “I need tissues and to be close to more red lanyards.” He nodded.

The presentation was good. I would say great, but she was telling me the opposite of what I wanted to hear and she made me cry even more. Her message was not, “Bottle that up, no one wants to hear about your stupid worries. Be grateful you’re alive! Why are you so neurotic?” Rather, she insisted, this traumatic thing you’ve been through was hard. It was awful. You are going to feel the pain and the fear of it all. You can ignore it, but it will pound the windows until you deal with it. You have to feel the feelings. “No!” I said to every therapist that’s had the misfortune of collecting a co-pay from me: I don’t want to feel the feelings. I prefer not to.

I have been taught that feelings are appropriate when they serve a purpose. It’s okay to feel nervous before a test because it motivates you to try harder. You can be scared if you’re walking down a dark city street in the middle of the night because you have to protect yourself from rapists. That about it. It’s my birthright to not feel the feelings. My mother is of English coal mining, farming people. We are world renowned self-medicators. My father traced his ancestry to the Mayflower. They’re known for a lot of things, those puritans. But not feeling feelings. That DNA taught me survival tricks like frigidity and wild paranoia.

There was a point when the speaker brought several survivors up on stage and talked with them, Kathy and Hoda-style. The first young man had a yellow shirt and a personality so sunny that I though oh, he’s a glass-half-full person. I’ve heard of them! The impression left me unprepared for the point in his story in which he finds himself on the floor of the bathroom, weeping, and praying to God for death to take him so he won’t have to continue to walk this path. His mother told him to keep going. Not a dry eye between my two.

You might remember me asking Siri what to do about my wish to give up. She told me some Bing search results.

I buried my head in my lap trying to muffle, but a sobber’s shuddering back is a dead giveaway. My kind neighbor asked me if I was okay. I lied but I’m no good at it and there was god/fate/luck coming in again. He told me he was 10 years out, a teen at diagnosis. It didn’t occur to me to say anything even close to “I’m sorry.” I think I went with “wow.” I felt a bit of envy at how well he seemed to have shaped the pieces of his life. He had been in the dark feelings tunnel that I still had to explore. I asked questions as wide ranging as what was your major to how do you ever trust anything or anyone in the world again in your whole life?” The latter was helpful. He said for him, it turned out to be more trusting his body than anything. That that took six years. I heard other survivors and advocates mention this—the long road back to trusting your body. Before CancerCon I didn’t even conceive of the fact that most of my trust issues stem from being unable to live in peace with my body.

But what does that mean, trust your body? Is this some sort of eastern thing? No. You go to sleep every night in faith that those lungs inside you, that respiratory drive, will keep you breathing. The heart, lub-dub, will pump and perfuse those kidneys and for certain those kidneys will filter and wake you up with a full bladder but, thanks urethral sphincter, no pee on the bed. Ever since you learned to ride a two wheeler you’ve remained upright, balanced, and moving forward. The Krebs Cycle goes on being round and your DNA is transcribed and copied and edited to correctness by those adorable transcriptases and you build new proteins and cells.

Until your body betrays you, and not just in a little pee on the bed way. Not that tedious, frustrating way that aging causes your body to betray you. No, full on in your prime one day, the next you’re signed up for surgery, radiation, chemo and/or immunotherapy, in an effort to preserve your very existence. Who was minding the store while this happened, corporeal self?

During a live performance of the program This American Life, in the last public reading of his work before his death from a sarcoma secondary to the radiation used to treat his post-college Hodgkin’s Lymphoma, David Rakoff described this as “Everybody loses ability as they age, if you’re lucky, this happens over the course of a few decades. If not. Well.” Well, it makes you real angry.

I am not done with my tremendous anger with my body. I get pleasure out of subjecting it to the kind of swimming that hurts. Running like I’m being chased. I can’t be bothered to feed it. I bathe for the sake of others. My cavities don’t faze me anymore. I’ve begged to have teeth pulled but I can’t find a dentist sketchy enough to agree to my desire to pitch as much of this flesh and bone as possible into a biohazard bag bound for the incinerator.

It’s terrible to speak of. But it’s not terrible to live. There is neuroscientific research describing the phenomenon of people in moments of crisis feeling as though time slows. They experience their environment frame-by-frame, sometimes with an outside of themselves perception. The theory involves the amygdala and a bath of chemicals released creating a record in our memory much more rich in detail than the one we use to drive to work or half listen to our children’s whining. The slowing is an effect created by our excited brain’s unlocked superpower: hyperarousal. It is a disorienting sensation and not at all unpleasant. I feel at the conference that I am in the throes of this excitatory state. It’s like drugs, mildly hallucinogenic. Terrifying and wonderful. Some things are permanent engravings in my consciousness: the close clouds, the smell of the soup I couldn’t eat, the dry blowing snow, the contours of the face of the man at the table who comforted me.

I haven’t known how to describe my experience at CancerCon. My biggest admission was that, according to my itinerary, I barely experienced CancerCon. I flew all the way to Denver and I attended only two programmed events. But I walked around stood beside and breathed the same hotel air as my compatriot survivors. I watched like a tourist. I wore a red lanyard in front of others. I was a cancer survivor in public. I talked to people. Even if one of those people was a Golden Retriever.

I can’t narrow it. The experience is everything from collapsing at diagnosis, soldiering through treatment, walling off through years of survival, to this new CancerCon-induced era of hallucinogenic awareness. I’m trying to consolidate selves. The blank space I retreat to and the glass case of emotion I’m trapped in. Slowly unwalling, having faith that like a course of multiple powerful antibiotics new people and old friends and my own courage will be strong enough to break down emotional calcifications. Writing helps too. I feel like I’ve made a lot of progress.

Absolutely none of my life is a curse. Not my cancer, not the husband I lost after my life crisis battle style proved incompatible with his, not the infinite nights waking up at three AM in cold sweats. I’ve seen more sunrises (literal ones) in my survival years than in all prior years combined. Sunrises are beautiful and you are insane to get up just to see them, but if you’re already up? What a gift.

I hear this from the sick I take care of day-to-day in my work as a nurse, and as a patient I do dare affirm: what you need will always show up. This is the non-believer’s way of saying “the lord provides.” I am fine with both. In fact, I am fine with whatever it is that is getting you through life’s gauntlet on a mission to heal or be healed. For me I follow my gifts in time of dire need backward like a trail of bread crumbs: CancerCon, a fellow survivor reaching out, a psychology built to protect me, a nurse friend recommending an advocacy group. Twitter. The lord/fate/luck works in mysterious ways.

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.

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.

Valentine’s for broken hearts

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 

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. ✌️