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.

Advertisements

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.

Open Access. For journals. For everything.

Open Access. For journals. For everything.

The journals that publish those papers are, in many cases, for-profit institutions — and they prefer charging for access.

via The Gates Foundation pushes to make more academic research free and open to the public – Vox.

The (TAXPAYER FUNDED) National Institutes of Health, which spends about $30 billion yearly on medical research, began in 2008 requiring that research studies it funds be made open access a minimum of one year after publication. The Gates Foundation now requires that publication of the research it funds be openly accessible by the public starting now and for, like, ever–meaning that publishing in big brand name subscription-only journals might be off the table. This puts pressure on those journals to provide open access. HOORAY! Science evolves!

At the moment clinical research is the area of study least likely area to be open access. The community hospital I work at provides its clinicians no scholarly resources. My school bestie and I our putting our thesis where our mouth is by choosing to study and promote access to clinical resources for staff nurses…despite being told by every adviser we have that it’s a bad idea. We may (probably will) go down in flames, but sometimes the amount of push-back you get is proportional to how right you are.

Ethical problems crop up in establishments that sustain themselves by limiting access. Closed institutions embolden those with access to manipulate those without, provide a nice incubated broth for corruption, weaken the rigor of their founding principles, and encourage opacity to protect against anything that might devalue access.

Am I talking about academia? The journal Nature? Fraternities?

If you opt for open access and promote a culture of transparency you’ll get two things: 1.) Diffusion of knowledge making fertile ground for creativity and innovation, 2.) Confronted with the fact that there’s a lot of bad wood underneath the veneer. Which is the first step in getting that rotten stuff out of there.