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Obamacare matters. But the debate about it also misdirects attention away from massive collateral damage to patients. How massive? Dig To Make Hospitals Less Deadly, a Dose of Data, by Tina Rosenberg in The New York Times. She writes,

Until very recently, health care experts believed that preventable hospital error caused some 98,000 deaths a year in the United States — a figure based on 1984 data. But a new report from the Journal of Patient Safety using updated data holds such error responsible for many more deaths — probably around some 440,000 per year. That’s one-sixth of all deaths nationally, making preventable hospital error the third leading cause of death in the United States. And 10 to 20 times that many people suffer nonlethal but serious harm as a result of hospital mistakes.

The bold-facing is mine. In 2003, one of those statistics was my mother. I too came close in 2008, though the mistake in that case wasn’t a hospital’s, but rather a consequence of incompatibility between different silo’d systems for viewing MRIs, and an ill-informed rush into a diagnostic procedure that proved unnecessary and caused pancreatitis (which happens in 5% of those performed — I happened to be that one in twenty). That event, my doctors told me, increased my long-term risk of pancreatic cancer.

Risk is the game we’re playing here: the weighing of costs and benefits, based on available information. Thus health care is primarily the risk-weighing business we call insurance. For generations, the primary customers of health care — the ones who pay for the services — have been insurance companies. Their business is selling bets on outcomes to us, to our employers, or both. They play that game, to a large extent, by knowing more than we do. Asymmetrical knowledge R them.

Now think about the data involved. Insurance companies live in a world of data. That world is getting bigger and bigger. And yet, McKinsey tells us, it’s not big enough. In The big-data revolution in US health care: Accelerating value and innovation (subtitle: Big data could transform the health-care sector, but the industry must undergo fundamental changes before stakeholders can capture its full value), McKinsey writes,

Fiscal concerns, perhaps more than any other factor, are driving the demand for big-data applications. After more than 20 years of steady increases, health-care expenses now represent 17.6 percent of GDP—nearly $600 billion more than the expected benchmark for a nation of the United States’s size and wealth.1 To discourage overutilization, many payors have shifted from fee-for-service compensation, which rewards physicians for treatment volume, to risk-sharing arrangements that prioritize outcomes. Under the new schemes, when treatments deliver the desired results, provider compensation may be less than before. Payors are also entering similar agreements with pharmaceutical companies and basing reimbursement on a drug’s ability to improve patient health. In this new environment, health-care stakeholders have greater incentives to compile and exchange information.

While health-care costs may be paramount in big data’s rise, clinical trends also play a role. Physicians have traditionally used their judgment when making treatment decisions, but in the last few years there has been a move toward evidence-based medicine, which involves systematically reviewing clinical data and making treatment decisions based on the best available information. Aggregating individual data sets into big-data algorithms often provides the most robust evidence, since nuances in subpopulations (such as the presence of patients with gluten allergies) may be so rare that they are not readily apparent in small samples.

Although the health-care industry has lagged behind sectors like retail and banking in the use of big data—partly because of concerns about patient confidentiality—it could soon catch up. First movers in the data sphere are already achieving positive results, which is prompting other stakeholders to take action, lest they be left behind. These developments are encouraging, but they also raise an important question: is the health-care industry prepared to capture big data’s full potential, or are there roadblocks that will hamper its use

The word “patient” appears nowhere in that long passage. The word “stakeholder” appears twice, plus eight more times in the whole piece. Still, McKinsey brooks some respect for the patient, though more as a metric zone than as a holder of a stake in outcomes:

Health-care stakeholders are well versed in capturing value and have developed many levers to assist with this goal. But traditional tools do not always take complete advantage of the insights that big data can provide. Unit-price discounts, for instance, are based primarily on contracting and negotiating leverage. And like most other well-established health-care value levers, they focus solely on reducing costs rather than improving patient outcomes. Although these tools will continue to play an important role, stakeholders will only benefit from big data if they take a more holistic, patient-centered approach to value, one that focuses equally on health-care spending and treatment outcomes.

McKinsey’s customers are not you and me. They are business executives, many of which work in health care. As players in their game, we have zero influence. As voters in the democracy game, however, we have a bit more. That’s one reason we elected Barack Obama.

So, viewed from the level at which it plays out, the debate over health care, at least in the U.S., is between those who believe in addressing problems with business (especially the big kind) and those who believe in addressing problems with policy (especially the big kind, such as Obamacare).

Big business has been winning, mostly. This is why Obamacare turned out to be a set of policy tweaks on a business that was already highly regulated, mostly by captive lawmakers and regulators.

Meanwhile we have this irony to contemplate: while dying of bad data at a rate rivaling war and plague, our physical bodies are being doubled into digital ones. It is now possible to know one’s entire genome, including clear markers of risks such as cancer and dementia. That’s in addition to being able to know one’s quantified self (QS), plus one’s health care history.

Yet all of that data is scattered and silo’d. This is why it is hard to integrate all our available QS data, and nearly impossible to integrate all our health care history. After I left the Harvard University Health Services (HUHS) system in 2010, my doctor at the time (Richard Donohue, MD, whom I recommend highly) obtained and handed over to me the entirety of my records from HUHS. It’s not data, however. It’s a pile of paper, as thick as the Manhattan phone book. Its utility to other doctors verges on nil. Such is the nature of the bizarre information asymmetry (and burial) in the current system.

On top of that, our health care system incentivizes us to conceal our history, especially if any of that history puts us in a higher risk category, sure to pay more in health insurance premiums.

But what happens when we solve these problems, and our digital selves become fully knowable — by both our selves and our health care providers? What happens to the risk calculation business we have today, which rationalizes more than 400,000 snuffed souls per annum as collateral damage? Do we go to single-payer then, for the simple reason that the best risk calculations are based on the nation’s entire population?

I don’t know.

I do know the current system doesn’t want to go there, on either the business or the policy side. But it will. Inevitably.

At the end of whatever day this is, our physical selves will know our data selves better than any system built to hoard and manage our personal data for their interests more than for ours. When that happens the current system will break, and another one will take its place.

How many more of us will die needlessly in the meantime? And does knowing (or guessing at) that number make any difference? It hasn’t so far.

But that shouldn’t stop us. Hats off to leadership in the direction of actually solving these problems, starting with Adrian Gropper, ePatient Dave, Patient Privacy RightsBrian Behlendorf, Esther Dyson, John Wilbanks, Tom Munnecke and countless other good people and organizations who have been pushing this rock up a hill for a long time, and aren’t about to stop. (Send me more names or add them in the comments below.)

A new window of the sole

monofocal interocular lens“I see,” we say, when we mean “I understand.” To make something “clear” is to make it vivid and unmistakable to the mind’s eye. There are no limits to the ways sight serves as metaphor for many good and necessary things in life. The importance of vision, even for the sightless (who still use language), is beyond full accounting. As creatures we are exceptionally dependent on vision. For us upright walkers sight is, literally and figuratively, out topmost sense.

It is also through our eyes that we express ourselves and make connections with each other. That eyes are windows of the soul is so well understood, and so often said, that no one author gets credit for it.

Yet some of us are more visual than others. Me, for example. One might think me an auditory or kinesthetic type, but in fact I am a highly visual learner. That’s one reason photography is so important to me. Of the many ways I study the world, vision is foremost, and always has been.

But my vision has been less than ideal for most of my adult life. When I was a kid it was exceptional. I liked to show off my ability to read license plates at great distances. But in college, when I finally developed strong study habits, I began getting nearsighted. By the time I graduated, I needed glasses. At 40 I was past minus-2 dioptres for both eyes, which is worse than 20/150. That was when I decided that myopia, at least in my case, was adaptive, and I stopped wearing glasses as much as possible. Gradually my vision improved. In 1999, when the title photo of this blog was taken, I was down to about 1.25 dioptres, or 20/70. A decade later I passed eye tests at the DMV and no longer required corrective lenses to drive. (Though I still wore them, with only a half-dioptre or so of correction, plus about the same for a slight astigmatism. They eye charts said I was then at about 20/25 in both eyes.

My various eye doctors over the years told me reversal of myopia was likely due to cataracts in my lenses. Whether or not that was the case, my cataracts gradually got worse, especially in my right eye, and something finally needed to be done.

So yesterday the lens in my right eye was replaced. That one was, in the words of the surgeon, “mature.” Meaning not much light was getting through it. The left eye is still quite functional, and the cataract remains, for now, mild.

Cataract surgery has become a routine outpatient procedure. The prep takes about an hour, but the work itself is over in fifteen minutes, if nothing goes wrong, which it usually doesn’t. But my case was slightly unusual, because I have a condition called pseudoexfoliation syndrome, or PEX, which presents some challenges to the surgery itself.

As I understand it, PEX is dandruff of the cornea, and the flakes do various uncool things, such as clog up the accordion-like pleats of the iris, so the eye sometimes doesn’t dilate quickly or well in response to changing light levels. But the bigger risk is that these flakes sometimes weaken zonules, which are what hold the lens in place. Should those fail, the lens may drop into the back of the eye, where a far more scary and complicated procedure is required to remove it, after which normal cataract surgery becomes impossible.

In the normal version, the surgeon makes a small incision at the edge of the cornea, and then destroys and removes the old lens with through a process called phaceomulsification. He or she then inserts an intraocular lens, or IOL, like the one above. In most cases, it’s a monofocal lens. This means you no longer have the capacity to focus, so you need to choose the primary purpose you would like your new lens to support.  Most choose looking at distant things, although some choose reading or using a computer screen. Some choose to set one eye for distance and the other for close work. Either way you’ll probably end up wearing glasses for some or all purposes. I chose distance, because I like to drive and fly and look at stars and movie screens and other stuff in the world that isn’t reading-distance away.

The doctor’s office measured the dimensions of my eye and found that I wouldn’t need any special corrections in the new lens, such as for astigmatism — that in fact, my eyes, except for the lens, are ideally shaped and quite normal. It was just the lenses that looked bad. They also found no evidence of glaucoma or other conditions that sometime accompany PEX. Still, I worried about it, which turned out to be a waste, because the whole thing went perfectly. (It did take awhile to get my iris to fully dilate, but that was the only hitch.)

What’s weird about the surgery is that you’re awake and staring straight forward while they do all this. They numb the eye with topical anesthetic, and finally apply a layer of jelly. (They actually call it that. “Okay, now layer on the jelly,” the doctor says.) Thanks to intravenous drugs, I gave a smaller shit than I normally would have, but I was fully conscious the whole time. More strangely, I had the clear sense of standing there on my retina, looking up at the action as if in the Pantheon, watching the hole in its dome. I could see and hear the old lens being emulsified and sucked away, and then saw the new lens arriving like a scroll in a tube, all curled up. As the doctor put it in place, I could see the lens unfurl, and studied one of the curved hair-like springs that holds it in place. Shortly after that, the doctor pronounced the thing done. Nurses cleaned me up, taped a clear shield over my eye, and I was ready to go.

By evening the vision through that eye became clearer than through my “good” left eye. By morning everything looked crystalline. In my follow-up visit, just 24 hours after the surgery, my vision was 20/20. Then, after the doctor relieved a bit of pressure that had built up inside the cornea, it was better than that — meaning the bottom line of the eye chart was perfectly clear.

Now it’s evening of Day 2, and I continue to be amazed at how well it’s going. My fixed eye is like a new toy. It’s not perfect yet, and may never be; but it’s so much clearer than what I saw before — and still see with my left eye — that I’m constantly looking at stuff, just to see the changes.

The only nit right now is  little rays around points of light, such as stars. But the surgeon says this is due to a bit of distortion in my cornea, and that it will vanish in a week or so.

The biggest difference I notice is color. It is now obvious that I haven’t seen pure white in years. When I compare my left and right eyes, everything through my left — the one with the remaining cataract — has a sepia tint. It’s like the difference between an old LCD screen and a new LED one. As with LED screens, whites and blues are especially vivid.

Amazingly, my computer and reading glasses work well enough, since the correction for my left eye is still accurate and the one for my right one isn’t too far off. For driving I removed the right lenses from my distance glasses, since only the left eye now needs correction.

But the experience of being inside my eye watching repairs in the space of the eye alone — sticks with me. All vision is in the brain, of course, and the world we see is largely a set of descriptions we project from the portfolio of things we already know. We can see how this works when we disconnect raw sensory perception from our descriptive engines. This is what happens with LSD. As I understand it (through study and not experience, alas), LSD disconnects the world we perceive from the nouns and verbs we use to describe it. So do other hallucinogens.

So did I actually see what I thought I saw? I believe so, but I don’t know. I had studied the surgical procedure before going into it, so I knew much of what was going on. Maybe I projected it. Either way, that’s over. Now I don’t see that new lens, but rather the world of light refracting through it. That world is more interesting than my own, by a wider margin than before yesterday. It’s a gift I’m enjoying to the fullest.

Uninstalled is Michael O'Connor ClarkeMichael O’Connor Clarke’s blog — a title that always creeped me out a bit, kind of the way Warren Zevon‘s My Ride’s Here did, carrying more than a hint of prophesy. Though I think Michael meant something else with it. I forget, and now it doesn’t matter because he’s gone: uninstalled yesterday. Esophogeal cancer. A bad end for a good man.

All that matters, of course, is his life. Michael was smart and funny and loving and wise far beyond his years. We bonded as blogging buddies back when most blogs were journals and not shingles of “content” built for carrying payloads of advertising. Start to finish, he was a terrific writer. Enviable, even. He always wrote for the good it did and not the money it brought. (Which, in his case, like mine and most other friends in the ‘sphere, was squat.) I’ll honor that, his memory and many good causes at once by sharing most of one of his last blog posts:

Leaky Algorithmic Marketing Efforts or Why Social Advertising Sucks

Posted on May 9, 2012

A couple of days ago, the estimable JP Rangaswami posted a piece in response to a rather weird ad he saw pop up on Facebook. You should go read the full post for the context, but here’s the really quick version.

JP had posted a quick Facebook comment about reading some very entertainingly snarky Amazon.com reviews for absurdly over-priced speaker cables.

Something lurking deep in the dark heart of the giant, steam-belching, Heath Robinson contraption that powers Facebook’s social advertising engine took a shine to JP’s drive-by comment, snarfled it up, and spat it back out again with an advert attached. A rather… odd choice of “ad inventory unit”, to say the least. Here’s how it showed up on on of JP’s friends’ Facebook news feeds:

I saw JP post about this on Facebook and commented. The more I thought about the weirdness of this, the longer my comment became – to the point where I figured it deserved to spill over into a full-blown blog rant. Strap in… you have been warned.

I’ve seen a lot of this kind of thing happening in the past several months. Recently I’ve been tweeting and Facebooking my frustration with social sharing apps that behave in similar ways. You know the kind of thing – those ridiculous cluewalls implemented by Yahoo!, SocialCam, Viddy, and several big newspapers. You see an interesting link posted by one of your friends, click to read the article, and next thing you know you’re expected to grant permission to some rotten app to start spamming all your friends every time you read something online. Ack.

The brilliant Matthew Inman, genius behind The Oatmeal, had a very smart, beautifully simple take on all this social reader stupidity.

It’s the spread of this kind of leaky algorithmic marketing that is starting to really discourage me from sharing or, sometimes, even consuming content. And I’m a sharer by nature – I’ve been willingly sharing and participating in all this social bollocks for a heck of a long time now.

But now… well, I’m really starting to worry about the path we seem to be headed down. Or should I say, the path we’re being led down.

Apps that want me to hand over the keys to my FB account before I can read the news or watch another dopey cat video just make me uncomfortable. If I inadvertently click through an interesting link only to find that SocialCam or Viddy or somesuch malarkey wants me to accept its one-sided Terms of Service, then I nope the hell out of there pretty darn fast.

How can this be good for the Web? It denies content creators of traffic and views, and ensures that I *won’t* engage with their ideas, no matter how good they might be.

All these examples are bad cases of Leaky Algorithmic Marketing Efforts (or L.A.M.E. for short). It’s a case of developers trying to be smart in applying their algorithms to user-generated content – attempting to nail the sweet spot of personal recommendations by guessing what kind of ad inventory to attach to an individual comment, status update, or tweet.

It results in unsubtle, bloody-minded marketing leaking across into personal conversations. Kinda like the loud, drunken sales rep at the cocktail party, shoe-horning a pitch for education savings plans into a discussion about your choice of school for your kids.

Perhaps I wouldn’t mind so much if it wasn’t so awfully bloody cack-handed as a marketing tactic. I mean – take another look at the ad unit served up to run alongside JP’s status update. What the hell has an ad for motorbike holidays got to do with him linking to snarky reviews of fancyass (and possibly fictional) speaker cables? Where’s the contextual connection?

Mr. Marketer: your algorithm is bad, and you should feel bad.

As you see, Michael was one of those rare people who beat the shit out of marketing from the inside. Bless him for that. It’s not a welcome calling, and Lord knows marketing needs it, now more than ever.

Here are some memorial posts from other old friends. I’ll add to the list as I spot them.

And here is his Facebook page. Much to mull and say there too. Also at a new memorial page there.

It’s good, while it lasts, that our presences persist on Facebook after we’re gone. I still visit departed friends there: Gil Templeton, Ray Simone, R.L. “Bob” Morgan, Nick Givotovsky.SupportMichaelOCC.ca is still up, and should stay up, to help provide support for his family.

His Twitter stream lives here. Last tweet: 26 September. Here’s that conversation.

Geologists have an informal name for the history of human influence on the Earth. They call it the Anthropocene. It makes sense. We have been raiding the earth for its contents, and polluting its atmosphere, land and oceans for as long as we’ve been here, and it shows. By any objective perspective other than our own, we are a pestilential species. We consume, waste and fail to replace everything we can, with  little regard for consequences beyond our own immediate short-term needs and wants. Between excavation, erosion, dredgings, landfills and countless other alterations of the lithosphere, evidence of human agency in the cumulative effects studied by geology is both clear and non-trivial.

As for raiding resources, I could list a hundred things we’ll drill, mine or harvest out of the planet and never replace — as if it were in our power to do so — but instead I’ll point to just one small member of the periodic table: helium. Next to hydrogen, it’s the second lightest element, with just two electrons and two protons. Also, next to hydrogen, it is the second most abundant, comprising nearly a quarter of the universe’s elemental mass.  It is also one of the first elements to be created out of the big bang, and remains essential to growing and lighting up stars.

Helium is made in two places: burning stars and rotting rock. Humans can do lots of great stuff, but so far making helium isn’t one of them. Still, naturally, we’ve been using that up: extracting it away, like we do so much else. Eventually, we’ll run out.

Heavy elements are also in short supply. When a planet forms, the heaviest elements sink to the core. The main reason we have gold, nickel, platinum, tungsten, titanium and many other attractive and helpful elements laying around the surface or within mine-able distance below is that meteorites put them there, long ago. At our current rate of consumption, we’ll be mining the moon and asteroids for them. If we’re still around.

Meanwhile the planet’s climates are heating up. Whether or not one ascribes this to human influence matters less than the fact that it is happening. NASA has been doing a fine job of examining symptoms and causes. Among the symptoms are the melting of Greenland and the Arctic. Lots of bad things are bound to happen. Seas rising. Droughts and floods. Methane releases. Bill McKibben is another good source of data and worry. He’s the main dude behind 350.org, named after what many scientists believe is the safe upper limit for carbon dioxide in the atmosphere: 350 parts per million. We’re over that now, at about 392. (Bonus link.)

The main thing to expect, in the short term — the next few dozen or hundreds of years — is rising sea levels, which will move coastlines far inland for much of the world, change ecosystems pretty much everywhere, and alter the way the whole food web works.

Here in the U.S., neither major political party has paid much attention to this. On the whole the Republicans are skeptical about it. The Democrats care about it, but don’t want to make a big issue of it. The White House has nice things to say, but has to reconcile present economic growth imperatives with the need to save the planet from humans in the long run.

I’m not going to tell you how to vote, or how I’m going to vote, because I don’t want this to be about that. What I’m talking about here is evolution, not election. That’s the issue. Can we evolve to be symbiotic with the rest of the species on Earth? Or will we remain a plague?

Politics is for seasons. Evolution is inevitable. One way or another.

(The photo at the top is one among many I’ve shot flying over Greenland — a place that’s changing faster, perhaps, than any other large landform on Earth.)

[18 September...] I met and got some great hang time with Michael Schwartz (@Sustainism) of Sustainism fame, at PICNIC in Amsterdam, and found ourselves of one, or at least overlapping, mind on many things. I don’t want to let the connection drop, so I’m putting a quick shout-out here, before moving on to the next, and much-belated, post.

Also, speaking of the anthropocene, dig The ‘Anthropocene’ as Environmental Meme and/or Geological Epoch, in Dot Earth, by Andrew Revkin, in The New York Times. I met him at an event several years ago and let the contact go slack. Now I’m reeling it in a bit. :-) Here’s why his work is especially germane to the topic of this here post:  ”Largely because of my early writing on humans as a geological force, I am a member of the a working group on the Anthropocene established by the Subcommission on Quaternary Stratigraphy.” Keep up the good work, Andy.

When I was a kid I had near-perfect vision. I remember being able to read street signs and license plates at a distance, and feeling good about that. But I don’t think that was exceptional. Unless we are damaged in some way, the eyes we are born with tend to be optically correct. Until… what?

In my case it was my junior year in college. That’s when I finally became a good student, spending long hours reading and writing in my carrel in the library basement, bad flourescent light, cramping my vision at a single distance the whole time. Then, when I’d walk out and the end of the day or the evening, I’d notice that things were a little blurry at a distance. After a few minutes, my distance vision would gradually clear up. By the end of the year, however, my vision had begun to clear up less and less. By the end of my senior year, I needed glasses for distance: I had become myopic. Nearsighted. I remember the prescription well: -.75 dioptres for my left eye and -1.oo dioptres for my right.

I then began the life of a writer, with lots of sitting still, reading things and writing on a typewriter or (much later) a computer. Since I tended to wear glasses full-time, the blurred distance vision when work was done — and then the gradual recovery over the following minutes or hours — continued. And my myopia gradually increased. So, by the time I reached my forties, I was down to -3 dioptres of correction for both eyes.

A digression into optics… “Reading” glasses, for hyperopia, or farsightedness, are in positive dioptres: +1, +2, etc. As magnifiers, they tend toward the convex, thicker in the middle and thinner toward the edges, or frames. Corrections for myopia tend toward the concave, thicker on the edges. You can sort-of see the thick edges of my frames in the YouTube video above, shot in June, 1988, when I was a month away from turning 42 (and looked much younger, which I wish was still the case). My glasses were Bill Gates-style aviators.

I also began to conclude that myopia, at least in my case was adaptive. It made sense to me that the most studious kids — the ones who read the most, and for the longest times each day — wore glasses, almost always for myopia.

So I decided to avoid wearing glasses as much as I could. I would wear none while writing and reading (when I didn’t need them), and only wear them for driving, or at other times when distance vision mattered, such as when watching movies or attending sports events. Over the years, my vision improved. By the time I was 55, I could pass the eye test at the DMV, and no longer required glasses for driving. In another few years my vision was 20/25 i

n one eye and 20/30 in the other. I still had distance glasses (mostly for driving), but rarely used them otherwise.

I’ve been told by my last two optometrists that most likely my changes were brought on by onset of cataracts (which I now have, though mostly in my right eye), and maybe that was a factor, but I know of at least two other cases like mine, in which myopia was reduced by avoiding correction for it. And no optometrist or opthamologist I visted in my forties or fifties noted cataracts during eye examinations. But all have doubted my self-diagnosis of adaptive myopia.

Now I read stories like, “Why Up to 90% of Asian Schoolchildren Are Nearsighted: Researchers say the culprit is academic ambition: spending too much time studying indoors and not enough hours in bright sunlight is ruining kids’ eyesight“… and the provisional conclusion of my one-case empirical study seems, possibly, validated.

It also seems to me that the prevalence of myopia, worldwide, is high enough to make one wonder if it’s a feature of civilization, like cutting hair and wearing shoes.

I also wonder whether Lasik is a good idea, especially when I look at the large number of old glasses,  all with different prescriptions, in my office drawer at home. What’s to stop one’s eyes from changing anyway, after Lasik? Maybe Lasik itself? I know many people who have had Lasik procedures, and none of them are unhappy with the results. Still, I gotta wonder.

 

is one of the world’s truly great guys. Besides being smart, funny, caring, hard-working, a good husband and father — and pretty much all the other positive stuff you could pack into a bio, Michael was one of the first people to not only dig  , but to grok it thoroughly at every level, including the multiple ironies at all of them. And to continue doing so through all the years since.

Like three of Cluetrain’s authors, Michael was a marketing guy who was never fully comfortable with the label or the role, and broke every mold that failed to contain him. Unlike those three, however, he continued to labor inside the business, which still needs many more like him. Because, from the start, Michael has always stood up for the the user, the customer, the individual whose reach should rightly exceed others’ grasp.

His labors are suspended, however, while he takes on a personal battle with .

Friends of Michael’s have put up SupportMichaelOCC.ca, so all of us who care about him and his family can easily lend support. He’s a sole breadwinner with four kids, so this is a tall order. Whether you know Michael or not, please do what you can.

Bonus links:

“When I’m Sixty-Four” is 44 years old. I was 20 when it came out, in the summer of 1967,  one among thirteen perfect tracks on The Beatles‘ Sgt. Pepper’s Lonely Hearts Club Band album. For all the years since, I’ve thought the song began, “When I get older, losing my head…” But yesterday, on the eve of actually turning sixty-four, I watched this video animation of the song (by theClemmer) and found that Paul McCartney actually sang, “… losing my hair.”

Well, that’s true. I’m not bald yet, but the bare spot in the back and the thin zone in the front are advancing toward each other, while my face continues falling down below.

In July 2006, my old friend Tom Guild put Doc Searls explains driftwood of the land up on YouTube. It’s an improvisational comedy riff that Tom shot with his huge new shoulder-fire video camera at our friend Steve Tulsky’s house on a Marin County hillside in June, 1988. It was a reunion of sorts. Tom, Steve and I had all worked in radio together in North Carolina. I was forty at the time, and looked about half that age. When my ten-year-old kid saw it, he said “Papa, you don’t look like that.” I replied, “No, I do look like that. I don’t look like this,” pointing to my face.

Today it would be nice if I still looked like I did five years ago. The shot in the banner at the top of this blog was taken in the summer of 1999 (here’s the original), when I was fifty-two and looked half that age. The one on the right was taken last summer (the shades on my forehead masking a scalp that now reflects light), when I was a few days short of sixty-three. By then I was finally looking my age.

A couple months back I gave a talk at the Personal Democracy Forum where I was warmly introduced as one of those elders we should all listen to. That was nice, but here’s the strange part: when it comes to what I do in the world, I’m still young. Most of the people I hang and work with are half my age or less, yet I rarely notice or think about that, because it’s irrelevant. My job is changing the world, and that’s a calling that tends to involve smart, young, energetic people. The difference for a few of us is that we’ve been young a lot longer.

But I don’t have illusions about the facts of life. It’s in one’s sixties that the croak rate starts to angle north on the Y axis as age ticks east on the X. Still, I’m in no less hurry to make things happen than I ever was. I’m just more patient. That’s because one of the things I’ve learned is that now is always earlier than it seems. None of the future has happened yet, and it’s always bigger than the past.

We are what we do.

We are more than that, of course, but it helps to have answers to the questions “What do you do?” and “What have you done?”

Among many other notable things l did was survive breast cancer. It was a subject that came up often during the year we shared as fellows at the Berkman Center. It may not have been a defining thing, but it helped build her already strong character. Persephone also said she knew that her personal war with the disease might not be over. The risks for survivors are always there.

So it was not just by awful chance that Persephone showed up at a Berkman event this Spring wearing a turban. She was on chemo, she said, but optimistic. Thin and frail, she was still pressing on with work, carrying the same good humor, toughness, intelligence and determination.

The next time I saw her, in early June, she looked worse. Then, on June 24, Ethan Zuckerman sent an email to Berkman friends, letting us know that Persephone’s health was diminishing quickly, and that she “probably will not live through July.” He also said that she had moved to a hospice, but was doing well enough to read email and accept a few visitors — and that he had hoped to visit her on July 6. Just five days later, Ethan wrote to say that Persephone had died the night before. I had been working in slow motion on an email to her — thinking, I guess, that Ethan’s July 6 date was an appointment she would keep. This post began as that email.

Persephone is gone, but her work isn’t, and that’s what I want to talk about. It’s a subject I wanted to bring up with her, and one I’m sure all her friends care about. We all should.

What I want to talk about is not “carrying on” the work of the deceased in the usual way that eulogizers do. What I’m talking about is keeping Persephone’s public archives in a published, accessible and easily found state. I fear that if we don’t make an effort to do that — for everybody — that we’ll lose them.

The Web went commercial in 1995, and has only become more so since. Today it is a boundless live public marketplace, searched mostly through one company’s engine, which continues to adapt accordingly. While Google’s original mission (“to organize the world’s information and make it universally accessible and useful”) persists, its commercial imperatives cannot help but subordinate its noncommercial ones.

In my own case I’m finding it harder and harder to use Google (or any search engine) to find my own archived work, even if there are links to it. The Live Web, which I first wrote about in 2005, has come to be known as the “real time” Web, which is associated with Twitter and Facebook as well as Google. What’s live, what’s real time, is now. Not then.

Today almost no time passes between the publishing of anything and its indexing by Google. This is good, but it is also aligned with commercial imperatives that emphasize the present and dismiss the past. No seller has an interest in publishing last week’s offerings, much less last year’s or last decade’s. What would be the point?

It would help if there were competition among search engines, or more specialized ones, but there’s not much hope for that. Bing’s business model is the same as Google’s. And the original Live Web search engines — Technorati, PubSub, Blogpulse, among others — are gone or moved on to other missions. Perhaps ironically, Technorati maintained an archive of all blogging for half a decade. But I’ve been told that’s gone. is still there, but re-cast as a news engine. Only persists as a straightforward Live Web engine, sustained, I suppose, by Mark Cuban‘s largesse. (For which I thank him. IceRocket is outstanding.)

For archives we have two things, it seems. One is search engines concerned mostly about the here and now, and the other is Archive.org. The latter does an amazing job, but finding stuff there is a chore if you don’t start with a domain name.

Meanwhile I have no idea how long tweets last, and no expectation that Twitter (or anybody other than a few individuals) will maintain them for the long term. Nor do I have a sense of how long anything will (or should) last inside Facebook, Linkedin or any other commercial walled garden.

To be fair, everything on the Web is rented, starting with domain names. I “own” , only for as long as I keep paying a domain registrar for the rights to use it. Will it stay around after I’m gone? For how long? All of us rent our servers, even if we own them, simply because they use electricity, take up space and need to be maintained. Who will do that after their paid-for purposes expire? Why? And again, for how long?

Persephone worked for years at Internews.org. I assume her work there will last as long as the organization does. Here’s the Google cache of her Key Staff bio. Her tweets as (her last was June 9th) will persist as long as Twitter doesn’t bother to get rid of them, I suppose. Here’s a Google search for her name. Here’s her Berkman alum page. Here’s her Linkedin. Here are her Delicious bookmarks. More to the point of this post, here’s her Media Re:public blog, with many links out to other sources, including her own. Here’s the Media Re:public report she led. And here’s an Internews search for Persephone, which has five pages of results.

All of this urges us toward a topic and cause that was close to Persephone’s mind and heart: journalism. If we’re serious about practicing journalism on the Web, we need to preserve it at least as well as we publish it.

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News Without the Narrative Needed to Make Sense of the News: What I Will Say at SXSW is where and how Jay Rosen lays out his current thinking on new agendas for whatever journalism will become after we’re done with the current transition.

He has long been concerned with how explanation is “under-emphasized in the modern newsroom” and offers excellent examples of how explaining should work, as well as ideas about how to institutionalize it. For example, “The goal is to surface the hidden demand for explanation and create a kind of user-driven assignment desk for the explainer genre, which is itself under-developed in pro journalism”. He adds, “Are there other ways to surface this kind of demand?”

I’d call attention to the imperatives of stories, and the role that might be played by new sets of well-explained facts that can help frame or re-frame a story.

See, stories are what assignment editors want. They’re also what readers want. And stories are different to some degree from the current vogue-word narrative. They do overlap, but they are different.

A few months back I visited the subject of story in What’s right with Wikipedia? — a piece I wrote in response to a What’s Wrong With Wikipedia story that had run in the Wall Steet Journal. I don’t know if that story was part of the WSJ’s GOP-aligned “What’s Wrong With Everything Liberals Do” narrative, but in any case I felt the matter needed explaining. Some Wikipedians did a good job of showing how there wasn’t much of a story there (read the piece to see how). For my part, I felt the need to explain what stories are actually about, which is problems, or struggles. Said I,

Three elements make stories interesting: 1) a protagonist we know, or is at least interesting; 2) a struggle of some kind; and 3) movement (or possible movement) toward a resolution. Struggle is at the heart of a story. There has to be a problem (what to do with Afghanistan), a conflict (a game between good teams, going to the final seconds), a mystery (wtf was Tiger Woods’ accident all about?), a wealth of complications (Brad and Angelina), a crazy success (the iPhone), failings of the mighty (Nixon and Watergate). The Journal‘s Wikipedia story is of the Mighty Falling variety.

In his piece Jay mentions what a good Job the Giant Pool of Money episode of This American Life did of bringing sense to the country’s financial crisis. This gave rise to the PlanetMoney podcast, which is also terrific at explaining things. PlanetMoney feeds some of its best stuff to NPR’s news flow as well. One good example is Accidents of History Created U.S. Health System, which made it clear how we got to our wacky employer-supported health insurance system. Go listen to it and see if you don’t have a much better grasp on the challenge, if not of the solutions, currently on the table.

My point here, or one of them, is that the real story isn’t Obama vs. Intransigent Republicans (the Dems’ narrative) or Sensible Americans against Government Takeover (the Reps narrartive), but that we’ve got a health care system that burdens employers almost exclusively, rather than individuals, government (save for VA, Medicare and Medicaid), or other institutions. It’s an open quetion whether or not that’s screwed up, but at least it’s a question that ought to be at the center of the table, or the “debate” that been both boring and appalling.

This is consistent with what Matt Thompson says in The three key parts of news stories you usually don’t get, # 2 of which is WHAT WE MISS (1): The longstanding facts. But we also miss seeing the role that longstanding overlooked facts might play amongst the three story elements: protagonist, problem and movement. Take the problem of employer responsibility as a structural premise for health care. By itself, the problem just sits there. We need a protagonist and a sense that the story has movement. In the absence of either, we look for other defaults. Thus we cast Obama and his opponents as the protagonists, or to get into characterization as the issue if the topic gets logjammed, which it has been for awhile. So we hear about problems with the president’s charactrer. He’s not leading. Or … whatever. You can fill in the blanks

Meanwhile, we live in a world where employers are almost nothing like they were when the current health care system solidified at the end of World War II. In many towns (Santa Barbara, for example) the (or at least a) leading employer is “self”. Tried to get insurance for your self-employed butt lately? How about if you’re older than a child and have a medical history that’s other than perfect? Scary shit. Does the Obama plan make things better for you? According to this story in CNN, “Health insurance exchanges would be created to make it easier for small businesses, the self-employed and unemployed to pool resources and purchase less expensive coverage.” Hmm. “Easier” doesn’t sound like much relief. But doing nothing doesn’t sound good either.

So the easy thing is to go back to covering the compromise bill’s chances in Congress, and the politics surrounding it. That at least makes some kind of sense. We have all our story elements in place. It’s all politics from here on. Bring in the sports and war metaphors and let automated processes carry the rest. Don’t dig, just dine. The sausage-machine rocks on.

As Matt says, “… rarely do we acknowledge what we’re pursuing. When our questions make it into the coverage at all, they have to appear in the mouths of our sources, resulting in paltry, contorted pieces like this one, from the AP. Or they’re attributed to no one, weaseled into a headline that says only, ‘[Such-and-such] raises questions.’ Whose questions? Not ours, certainly.”

I also wonder if we’re barking up the wrong tree (or down the wrong hole) when we obsess about “curation” of news — a favorite topic of mainstream media preservationists. Maybe what we need is to see explainers as advocates of our curiosity about the deep questions, or deep facts, such that they might become unavoidable in news coverage.

This, of course, begs the creation of whole new institutions. Which is the job that Jay has taken up here. Let’s help him out with it.

[Later...] An additional thought: statistics aren’t stories.

I remember hearing about what were later called the killing fields of Cambodia, after refugees reported Pol Pot and the Khmer Rouge were murdering what eventually became more than a million people. Hughes Rudd delivered the story one on the CBS Morning News, as I recall between items on the Superbowl and Patty Hearst. He said that perhaps half a million people were already dead. But the story wasn’t a story. It was an item. It wasn’t until Sydney Shamberg ran “The Death and Life of Dith Pran” in the New York Times’ Sunday Magazine that the story got real. It got human. It had a protagonist. It became a movie.

I thought about this when I noticed there were exactly no comments following my Gendercide post. Here’s the fact that matters: countless baby girls are being killed, right now. But that’s not a story. Not yet. Not even with help from The Economist. I think the job here isn’t just to get more facts, or even to get the right name and the right face. The story needs its Dith Pran, and doesn’t have her yet. (Or, if it does, news hasn’t spread.)

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witw1
Years ago, before Flickr came into my life and provided incentives for hyper-identifying everything about every photograph, I had a brief-lived series of photographic teases called Where in the World? — or something like that. (Can’t find the links right now. Maybe later.)

So I thought I’d fire it up again for the shot above, which I took recently on a road trip. Can anybody guess what this is? Bonus points if you can say exactly where.

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About a month ago I offered myself to my kid as an example of good dental hygeine practices. While I have a mouthful of gold (owing mostly to molars that came with deep gooves that no brush could reach), all my teeth are alive. Wisdom teeth and all. I brush and floss every day, I told him. And I’ve used a Sonicare toothbrush for many years. The kid has one too. (Mostly it enforced a 2-minute discipline, though I usually go longer.) No cavities since I started with it.

So about an hour after I bragged on my teeth, number 17, my left mandibular third molar — the back wisdom tooth on the bottom — started to hurt like hell. I took Tylenol for it, but it only got worse, to the point where I couldn’t do anything but sit or lie there in fire-red pain that trobbed with every pulse.

After it failed to go away, I went to a dentist at Harvard Health Services. She couldn’t see anything in the x-ray and sent me to an endodontist — or a practice with six endodontists.

On the first visit, Dr. #1 saw nothing on his x-ray, and gave me some antibiotics, hoping that this would kill any infection that might be there but not visible. I took that for a week, during which the pain was the same or worse. In the course of that week I also discovered that Tylenol (acetaminophen) was the only over-the-counter pain-killer that mixed with other drugs I already take, and could cause liver damage in some cases. I checked with a pharmacist, who said not to go over 4,000 mg/day. But I found that only doses of 1,000 mg worked, and for only about three hours at a stretch. So I would dose when I needed to work, and otherwise was pretty useless.

When I went back and saw Dr. #2, he took a look with a microscope and saw a crack in the tooth, and also did some tests that confirmed it. His recommendation: get a root canal. So we scheduled one. On the way, however, I screwed up what trains I was taking, arrived a bit late, and then the anesthesia didn’t fully deaden the tooth. The doctor said we’d have to reschedule. So we did. By this time the pain was still strong, but 500 mg doses of Tylenol were working, so that gave me 8 pills a day to take.

Dr. #3 was late this time, and we had to re-schedule again.

This morning Dr. #3 did the job. The nerve is now gone, replaced with grout (or whatever they use). Turns out the crack was not front-to-back, and the tooth is strong, if also dead. My jaw hurts like hell, but that’s mostly from the multiple needle stabs required to fully anesthetize the tooth. (The nerve bundles serving the jaw are in odd places.)

Total time from toothache to toothfix: almost a month.

So the good news is that the tooth won’t hurt again. The bad news is the cost, but that’s the American Way. Also all the work I couldn’t get done because I was moving at reduced speed. Lots coming up, so it’s good to be fixed again.

The dark and gathering sameness of the world. An excerpt:

  The consequence of this is a “plague of sameness” and the loss of a distinct species every ten minutes. Some types of fruits and vegetables have lost 90% of their variants. An entire language disappears every two weeks. “We are not gaining knowledge with every human generation”, Glavin says, “we are losing it”. “All these extinctions are related…and the language of environmentalism is wholly inadequate to the task of describing what is happening…It doesn’t have the words for it”. Wherever he travels, he says, he finds the overwhelming majority of people are troubled by this loss of diversity, but at a loss to know what to do about it.

Nobody knows anything. Excerpts:

  Because of our horrific overpopulation and exhaustion of our planet and its resources, we have entered into a period of chronic, massive, global stress, and it’s made us all crazy, like rats in a lab fighting over the last few scraps of food. We’ve stopped listening to ourselves and started looking for saviours — ‘leaders’ and ‘experts’ to show us and tell us what to do.

  The so-called ‘leaders’ and ‘experts’ I’ve met are mostly very intelligent people, but they haven’t a clue. They’re buoyed by their own press and by sycophants fighting their way up from the bottom or desperate to believe that someone is in charge, in control, and knows what needs to be done. These ‘leaders’ hang out with other people just like themselves, and their groupthink persuades them that they’re right, they’re important, that what they say and do and decide really matters...

  We have destroyed this planet for future generations and for all-life-on-Earth, and the worst culprits are still doing it, while we sit around stupidly watching them, wondering what to do, waiting for someone, anyone, to save us from us.

  We need to stop listening to these know-nothing, cowardly ‘leaders’. We need to stop paying them. We need to stop working for them. We need to stop investing in them. We need to stop trusting them, and stop believing the nonsense they are telling us. We need to stop voting for them, and paying taxes to finance their backroom deals. We need to stop buying overpriced crap from their fat, mismanaged organizations. We need to send some of them to jail for criminal fraud and the rest out to pasture, and take back our society, our economy, our Earth from these thieves, these self-deluded con men. No more leaders.

Just something to cheer you up on a Sunday.

I’m on the East Coast for the rest of the current fire season in California. Which is cool, literally. I miss Santa Barbara, but not the fear of destruction (which I generally don’t have there, but I need my rationalizations). Speaking of which, here’s The Mania of Owning Things, my EOF column for August 2009 issue of Linux Journal. I wrote it during the Jesusita Fire, the second fire-bullet we dodged this year.

The column title refers to the last line of this bit of Whitman:

I think I could turn and live awhile with the animals.
They are so placid and self-contained.
I stand and look at them sometimes half the day long.
They do not sweat and whine about their condition.
They do not lie awake in the dark and weep for their sins.
Not one is dissatisfied.
Not one is demented with the mania of owning things.

(For some reason most of those lines didn’t make it into the published piece. So, when you look at it, bear in mind that the top text is part of Whitman and none of me.) Some exerpts (from me, not Whitman):

Ambition and industry in the face of inevitable destruction is the job of life…

I believe in ownership—not for economic reasons, but because possession is 9/10ths of the three-year-old. We are all still toddlers in more ways than we’d like to admit—especially when it comes to possessions.

We are grabby animals. We like to own stuff—or at least control it. Where would a three-year-old be without the first-person possessive pronoun? No response is more human than “Mine!” And yet possessions are also burdens. I have a friend whose childhood home was burned twice by the same nutcase. He’s one of the sanest people I know. I can’t say it’s because he has been relieved of archives and other non-negotiables, but it makes a kind of sense to me. I have tons of that stuff, and I’ve thought lately about what it would mean if suddenly they were all cremated. Would that really be all bad? What I’d miss most are old photos that haven’t been scanned and writing that hasn’t been digitized in some way. But is my digital stuff all that safe either?…

I’ve just started backing (it) up “in the cloud”. But how safe is that? Or secure? Companies are temporary. Servers are temporary. Hell, everything is temporary.

When I was young, I acknowledged death as part of the cycle of life. Now I think it’s the other way around. Life is part of the cycle of death. Life generates fuel for death. It’s a carbon-based refinery for lots of interesting and helpful stuff.

Think about it. Marble. Limestone. Travertine. Oil. Gas. Coal. Wood. Linoleum. Cement. Paint. Plastics. Paper. Asphalt. Textiles. Medicines. Even the heat used to smelt iron and shape glass comes mostly from burning fossil fuel. The moon has abundant aluminum ores. But how would you produce the heat required for extraction, or do anything without the combustive assistance of oxygen? Ninety-eight percent of the oxygen in Earth’s atmosphere is produced by plants. Most of the sources are now dead, their energies devoted to post-living purposes.

The Internet grows by an odd noospheric process: duplication. In “Better Than Free”, Kevin Kelly makes an observation so profound and obvious that you can’t shake it once it sinks in: “The Internet is a copy machine.” As a result, the Net is turning into what Bob Frankston calls a “sea of bits”. This too is an ecosystem of sorts. Is it, like Earth’s ecosystem, a way that death makes use of life? I wonder about that too.

Anyway, the rest is here.

Seems I with , , , , , and about 1/365th of the world’s population. I also , “the first general-purpose electronic computer“, and I were fired up the very same day in 1947 — ENIAC at Aberdeen Proving Grounds and I at in Jersey City. ENIAC worked until its plug was pulled in 1955. I still feel like I’ve just been plugged in. (Guess ENIAC was a pessimist.)

My birthday present to myself will be getting lots of work done.

Bonus link.

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I’m listening right now to On Point*, where the topic is Pushing E-Health Records. The only case against electronic health records (EHR, aka electronic medical recordsk, or EMR) is risk of compromised privacy. Exposure goes up. The friction involved in grabbing electronic medical records is lower than that involved in grabbing paper ones, especially with the Internet connecting damn near everything.

Here’s the problem with privacy in the Internet Age (which we are now in, with no hope of ever getting out, unless we live the connectionless life): the Net is a big copy machine. It’s amazing how a fact so simple escapes attention until a first-rate metaphorist such as Kevin Kelly comes along to expound on what ought to be obvious:

The internet is a copy machine. At its most foundational level, it copies every action, every character, every thought we make while we ride upon it. In order to send a message from one corner of the internet to another, the protocols of communication demand that the whole message be copied along the way several times. IT companies make a lot of money selling equipment that facilitates this ceaseless copying. Every bit of data ever produced on any computer is copied somewhere. The digital economy is thus run on a river of copies. Unlike the mass-produced reproductions of the machine age, these copies are not just cheap, they are free.

Our digital communication network has been engineered so that copies flow with as little friction as possible. Indeed, copies flow so freely we could think of the internet as a super-distribution system, where once a copy is introduced it will continue to flow through the network forever, much like electricity in a superconductive wire. We see evidence of this in real life. Once anything that can be copied is brought into contact with internet, it will be copied, and those copies never leave. Even a dog knows you can’t erase something once it’s flowed on the internet.

We’re not going to fix that. The copying nature of the Net is a feature, not a bug. We can fight some of it with crypto between trusting parties. But until we find ways to make that easy, the exposure is there. And, as long as it is, we’re going to have people who say risk of exposure overrides other concerns, such as the fact that dozens of thousands of people in the U.S. alone die every year of bad health care record keeping and communications — in other words, of bad data.

Still, if we want good medical care, we need EHR. That much is plain. The question is, How?

The answer will not be an information silo, or a set of silos. We have too many of those already. That’s the problem we have now — both on paper and in electronic formats (as I discovered last year in one of my own medical adventures).

The patient needs to be the point of integration for his or her own data, and the point of origination about what gets done with it. Even if the patient’s primary care physician serves as a trusted originator of medical decisions, the patient needs to anchor the vector of his or her own care, for the simple reason that the patient is the one constant as he or she moves through various medical specialties and systems.

The patient needs to be the platform. Not Google, or Microsoft, or your HMO, or the VA, or some kieretsu involving Big Pharma, Big Software Companies and Big Equipment Makers.

This requires classic VRM: tools of independence and engagement. That is, tools that enable the patient to be independent of any health care provider, yet better able to engage any provider.

In other words, while the answer needs to be systematic, it does not need to be A Big System (which I fear both BigCos and BigGovs whish to provide).

The answer needs to come from geeks who know how to eliminate big problems with simple solutions. For example,

  • Consider how the Internet Protocol solved the problem of multiple networks that didn’t get along.
  • Consider how email protocols such as SMTP, POP3 and IMAP solved the problem of multiple email systems that didn’t get along.
  • Consider how the XMPP protocol solves the problem of multiple instant messaging systems that don’t get along.

We need new ways of organizing our own health care data, and communicating that data selectively to trusted health care providers through open and standard protocols (that may or may not already exist… I don’t know).

I wanted to get those thoughts down because there’s a bunch of stuff going on around health care right now (including two conferences in Boston), detailed to some degree in Health Care Relationship Management, over at the ProjectVRM blog.

* On WBUR, a Boston station I pick up here in Santa Barbara over my Public Radio Tuner.

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Hanging in The Cities on (what wants to be) a Spring Day (a little snow still on the ground), talking deep blogging trash with Sharon Franquemont and Mary Jo Kreitzer. They’re both new to the practice (which isn’t quite a discipline, at least in my case). So bear with me as I show off some stuff.

For example, I just looked up personal health records on Google. As it happens, I already had Greasemonkey and the twitter search script installed. Thanks to that neat little hack, a pile of Twitter search results from the live web appears at the top of a Google search. Here’s a screen shot:

Note that among the Twitter results is one from adriana872, who is none other than my good friend Adriana Lukas, who I see also has a tweet that says “targetted advertising is visual spam”. Which resonates with me totally, of course. She links to her own post on the subject, which sources this post by Brian Micklethwait.

Which is all cool and conversation-inducing as well as expertise-spreading and authority-building and stuff like that. (Remember I’m showing how to blog here. Bear with me.)

I’ll also tag the shit out of all the above. Not sure if the tags appear here (I blog in too many places and I forget), but they exist.

I also just tweeted this post, with a #blogging hashtag, and instantly, we get this:

The Live Web indeed.

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From Chris Brogan via JP, a call to re-tweet: Sew hoping for a miracle.

Here is an earlier picture (and post about) Marielle, by her mom, the blogger Sue (aka Sew), of The Domestic Diva.

Marielle is dying, literally, for a kidney match.

Pass the word along. Somebody somewhere should be able to help.

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These are a few among the many salt ponds that ring the south end of San Francisco Bay. Once considered and agricultural innovation and an economic boom, the practice of “reclaiming” wild wetlands for industrial purposes is now considered ecologically awful by environmentalists, especially here on the West Coast of the U.S., which has precious few wetlands in any case. Many environmentalists have been working to get Cargill to close the ponds and return the Bay to its more natural state. Cargill hasn’t budged. In fact, <a href=”http://www.cargill.com/sf_bay/saltpond_ecosystem.htm”>Cargill has its own views</a> on the matter, plus some interesting facts about the ponds themselves.

It’s worth pointing out that the Bay is actually one of the youngest features on the California landscape, having flooded within only in the last couple thousand years, as sea levels rose. (Global warming has been happening, in fact, since the last ice age.)

I took this shot two days ago on approach to San Francisco on a flight from Boston. Here’s a set of all the photos I’ve taken of salt ponds, both here and in the desert. And here is the whole set of shots I took from coast to coast. Most were at the ends of the flight, since the sky was undercast most of the way.

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(This post began as a response to this comment by Julian Bond, in response to this post about Mad Men. When it got too long I decided to move it here.)

Smoking and drinking were standard back then. “Widespread” doesn’t cover it. They were nearly universal.

It’s easy to forget that Industry won WWII, and that the military-industrial complex crossed the whole society. All young men served in the military, either voluntarily or via the draft. Industry and its companion, Science, ruled. And — to an unhealthy degree — the former drove the latter.

Tobacco was an leading agricultural product, and cigarette manufacture was a leading industry that drove consumption through advertising so thick and ubiquitous — on TV and radio, in magazines, newspapers and on billboards — that for most people the only choice was which brand to smoke.

I remember thinking, as a child, that lighting sticks on fire and breathing the smoke was absurd and unhealthy on its face — and later being the only one of my high school friends who didn’t smoke. But I was weird. Common sense then was pro-smoking.

Drinking and driving was only a little harder to rationalize. I remember statistics that said one in twenty-five drivers at night in the U.S. were drunk.

Industry and Science also together decided, among other things, that –

  • Breast feeding was bad for babies, and “formula” was better. Thank you, Nestle.
  • Children at birth should be taken from their mothers and stored in nurseries.
  • All boys should all be circumcised at birth. So much for the Hippocratic oath: “First, do no harm.”
  • Tonsilitis” was a disease, and every severely sore throat should be treated surgically, involving removal of adenoids from the nose as well.
  • Intestinal infections were likely to be appendicitis, so the appendix had to go too.
  • Education is a manufacturing process, the purpose of which is to fill the empty vessels of childrens’ heads with curricula approved by the State.
  • Childrens’ intelligence — their most unique and human quality — was a fixed quantity (a “quotient”) that could be measured, as if by a dipstick,  with IQ tests, so herds of students  could be sorted into bell curves to better manage their progress through systems that regarded them — with the acquiescence of themselves and their parents — as “products” of their education.

I could go on. For what it’s worth, I have my appendix, but lack tonsils, adenoids, spleen and foreskin, all of which were considered “vestigial” or otherwise bad by the medical fashions at the times of their removal. My known IQ scores have a range of 80 points. If my parents hadn’t believed in me, my low IQ and standardized test scores in the 8th grade would have shunted me to a “vocational-technical” high school to learn wood shop, auto mechanics or some other “trade”. I shall always be grateful for that.

Mad Men is close to home for me in another way: I was long in the advertising business too, though a generation after Mad Men’s time, well after the “creative” revolution of the mid- to late 60s. It was one of the great periods in my life, but I’ve moved on. Similarly, I had a hard time watching the Sopranos, because I grew up in New Jersey, knew people like those, and was not entertained.

I think drugs and self-abuse are rituals of youth rationalized in their time by a sense of exemption from the due invoice we call aging. How long before fewer people are being tatooed than those having tattoos removed? I’m giving it 20 years.

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Steve Lewis writes, Obama’s “Homeostasis”: It must be the Roedjak! — a deep and wonderful detour from the usual punditry about a candidate’s temperament, informed by Steve’s years working in Indonesia, as well as his exposure to many countries and cultures unfamiliar to most Americans. I hope Steve doesn’t mind my lifting most of his post to repeat here. Dig:

So far, Obama’s seeming detachment has been exploited by his opponents as proof that “we don’t know who he his” or as a sign of his supposed smugness and intellectual superiority.  And, for, quite a number of Democrats Obama’s politeness and fixed smile are an unsettling suggestion of a lack of the politically requisite instinct to go for the jugular.  I would suggest something quite different and far more positive … namely, that Obama knows how to eat Roedjak.

Roedjak is an Indonesian fruit salad, slices of not yet fully ripened tropical fruits served with a sauce of sweet thick soy ketjap, tamarind paste, crushed chili papers, and a dash of dried dessicated shrimp.  Roedjak’s harmonic fusion of superficially contradictory tastes is more than culinary.  Roedjak restores equilibrium even while exciting the senses.  Preparing and eating Roedjak is a tonic during moments of personal emotional turmoil; domestic disagreements and work conflicts are calmed by sharing Roedjak when tensions to escalate. On the symbolic level, Roedjak embodies all that is positive of the values and social mores of southeast Asia.

Political commentators — other than those Republican cranks who have accused Obama of having attended fundementalist Muslim Koranic schools — have overlooked the “Indonesian” facet of the Democratic presidential candidate, his formative years on the island of Java, and his being a member of a family with Indonesian connections as well as Kansan and Kenyan ones.

In Java, outward emotional evenness and display of respect are inherent to the workings of families and of villages.  Frontal confrontations are avoided and adversaries are given room to retreat.  Such stances are central to the the stylized conventions of Java’s traditional complexly hierarchical society and to the realities of domestic, social, and political life on an overpopulated agrarian island and in crowded mega-cities such as Jakarta.

On the surface, Java is devoutly Muslim but Javanese Islam rests on older strata of Hindu and Buddhist culture.  The characters of the Buddha and of the heroes of the Bhagavad Gita still resonate as strongly as those of the Prophet Mohammed and Ali.  In Java, one learns that displays of restraint are incumbent on leaders and are signs of strength in people at all levels of society.

And so, for the sake of the US and the world, I’d rather see the American presidency in the hands of a Roedjak eater than a heart-beat away from the rule of an eater of mooseburgers.  Join me for a mango, anyone?

I dunno if Roedjak explains Obama, but I do like getting an interesting new angle on an exceptional man.

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Fall in New England is a visual cliché of the first order, and exactly as advertised. Only better this weekend, because it’s been unseasonably warm, as well as clear and perfectly gorgeous, complete with full moons each night.

We’ve been out at a church retreat at Otter Lake, New Hampshire. And it’s been a healthy break for me, coming as I am off one of the worst colds in a long time. The fever broke yesterday morning, and the cough ended last night. It was the first night in a week when I actually slept the whole night and it was blissful.

Meanwhile, I’ve loved walking along the lake and in the woods. The loud colors at a distance usually turn out to be comprised of leaves with blisters, chewed-out edges and other signs of wear & tear. What I love about the forest here is that it’s mostly evergreen with deciduous trim. You can see one felicitous effect of that in the shot above, where pine needles hang like ornaments from the stems of maple leaves.

I’m pretty sure the shot above is of a sugar maple, though it might be a Norway. Maybe one of ya’ll can help here.

Anyway, we’re home again tomorrow and back to work.

Oh, by the way, all the shots in this series were taken with a little pocket camera rather than my big (and somewhat broken) SLR. Still, does the job.

It’s hard to feel shitty when the Steve Miller Band is playing Jet Airliner in the middle of your head. Or smart, either — at least in my case.

Jeebus, all these decades I’ve been thinking the chorus was

  Big old jet had a light on
Don’t carry me too far away
Oh oh oh big old jet had a light on
‘Cuz it’s here that I’ve got to stay.

Turns out “had a light on” is “airliner”. Well, duh. Of course. That’s the freaking title. But phonetically, Steve is singing “biggo jed adda line oh”. I say this with confidence because I just replayed it about ten times to make sure. That’s the audible, as they say in football.

Who knows what the hell Steve’s saying, anyway? Well, some of us do, and to explain, we have the Internet. For example, The Joker begins,

  Some people call me the space cowboy, yeah
Some call me the gangster of love
Some people call me maurice
Cause I speak of the pompitous of love

Or is that pomitus? Hell, The Pompatus of Love is a whole movie devoted to the question. The Straight Dope sez that “pompatus” (that’s how it sounds) actually goes way back:

  Speculation about “pompatus” was a recurring motif in the script for The Pompatus of Love. While the movie was in postproduction Cryer heard about “The Letter.” During a TV interview he said that the song had been written and sung by a member of the Medallions named Vernon Green. Green, still very much alive, was dozing in front of the tube when the mention of his name caught his attention. He immediately contacted Cryer.

  Green had never heard “The Joker.” Cryer says that when he played it for Green “he laughed his ass off.” Green’s story:

  “You have to remember, I was a very lonely guy at the time. I was only 14 years old, I had just run away from home, and I walked with crutches,” Green told Cryer. He scraped by singing songs on the streets of Watts.

  One song was “The Letter,” Green’s attempt to conjure up his dream woman. The mystery words, J.K. ascertained after talking with Green, were “puppetutes” and “pizmotality.” (Green wasn’t much for writing things down, so the spellings are approximate.)

  “Pizmotality described words of such secrecy that they could only be spoken to the one you loved,” Green told Cryer. And puppetutes? “A term I coined to mean a secret paper-doll fantasy figure [thus puppet], who would be my everything and bear my children.” Not real PC, but look, it was 1954.

Anyway, I’ve had a bad cold the last few days, and right now I’m sitting on the couch with a fever, trying to think and write while a vacuum cleaner roars in the next room. But now I’ve also got these Etymotic ER6i earphones jacked deep into my head, muting the noise and substituting ol’ Steve, singing about getting on “that 707″ — a plane nobody outside of Iran still flies. And it’s getting me high, just from the driving energy of the song.

Beats thinking about death, which comes easy when you’re 61 with a fever, a gut, and a history of exercise that consists mostly of getting dressed. But music helps. Music is the best evidence of immortality that we have.

Music is life. And vice versa. Listening to three-decade old Steve Miller on good earphones is life transfusion.

So is listening to an even older song: The Doors’ When the Music’s Over, from Strange Days, a brilliant, beautiful piece of work. To me Strange Days ranks among a handful of perfect albums, first song to last.

Which is When the Music’s Over, of course.

  When the music is your special friend,
dance on fire as it intends.
Music is your only friend,
until the end.

Strange Days came out in late ’67. I bought it in the summer of ’68 after Ken Rathyen, a guy on my ice cream route (he was a lifeguard at PV Beach in Pompton Plains, NJ) told me to get it. “Every song is a gem,” he said. He was right. (Kenny, if you’re out there, Yo!)

That fall I shared an apartment in an old house on Spring Garden Street in Greensboro, near Tate Street. Next door was a big Victorian, already boarded up. On Halloween night, a bunch of turned off all the lights and listened to Strange Days. After When the Music’s Over was over, we were deep in a creepy Halloween mood, and decided it would be fun to break into the “haunted house” next door. So we got a flashlight out, sneaked over, and found a way in.

There was no furniture, just empty rooms, with a coating of dust on everything… except for the footprints on the stairs. They were barefoot and small for an adult. We followed them up to the second floor, where they stopped. No other footprints went down.

Feeling creeped out, we pressed on, exploring this big old house. Still, other than the footprints, there was nothing.

Then we found the door to the attic. It was narrow, and opened to a narrow staircase. At the top was a camped room where there were a few items of furniture and some boxes. In one box was a diary by a girl who had lived there. She reported daily on what she saw out the window at the front of the attic, looking down on Spring Garden Street. She also gave weekly summaries of her favorite TV show, Whirlybirds, which last ran in 1960.

One name that appeared often in the diary was Jan Speas, who lived next door. I wondered if this was the same Jan Speas who taught creative writing at Guilford College, where I was a Senior at the time. (Jan, whose maiden name was Jan Cox and wrote as Jan Cox Speas, was best known as a writer of historical romances. More here.)

So we took the diary with us, and I brought it to Jan. Yes, Jan said, she remembered the girl well. They were good friends, and the diary was touching because the girl had later died.

Three years later Jan died too, of an unexpected heart attack. She was 46.

In August, 2004, ‘s Piedmont Bloggers Conference was held in the same exact spot as the condemned houses: the one I lived in, the haunted Victorian next door, and Jan Speas’ house on the other side of that one. I wrote about it here, and told the same creepy story here (but it doesn’t come up now, which is why I’m repeating myself).

But I’m still here. Dancing on fire. And getting back to real work, now that the vacuum cleaner is off.

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Since I lack a car here, I haven’t gotten out much, and not at all to any place that gave me a vantage on the fire. Until today, that is, when we went to Goleta and I had a chance to pause on Hollister Street by the airport where the Forest Service runs P3 Orion air tankers up to the fire sites to dump bright fire retardant on the landscape. (It’s not bad, by the way. Essentially, it’s fertilizer.) Here’s the photo set. (Also added more maps to this photo set.)

Tag: sbgapfire.

First, kudos again to Edhat‘s news list for not only gathering info from many sources, but for giving equal weight to both professional and amateur sources — and for hosting a great many comments on some of the postings. As an interactive local news service, “Ed” does a fine job. When surfing for the latest on the fire, it’s a good place to start. Others among these are good as well:

Second, I have been somewhat remiss by not including GeoMAC among sources for following the fire. You can follow maps from multiple sources, as I make screen shots and upload them, here. The latest from MODIS shows new fire activity (red dots, meaning in the last 0 to 12 hours) near highway 154 and on the uphill (north) and west sides of the fire perimeter. Highway 154 (San Marcos Pass) remains open.

The LA Times this morning has ‘Critical day’ dawns for Goleta fire, enlarged by overnight wind gusts, with a dramatic photo of an air tanker (see last paragraph below) dropping red fire retardant near a house. The summary:

The blaze, while 24% contained, grew to 8,357 acres. Firefighters plan to concentrate on protecting homes to the east before another night of ‘sundowners.’ At least 2,663 homes have been evacuated.

Note that there are 97 comments so far to that story.

KEYT has a summary of evacuation areas as of 5pm yesterday. That story also has a map.

Note that chapparal wildfires, especially in steep rocky country like this, do not only spread from their edges. They also spread by dropping burning material at distances from source flames, which can have powerful updrafts. This makes fighting these fires very hard on the ground.

Inciweb’s page for the Gap Fire currently gives its size as 54oo acres, with 1072 personnel working on the fire. Under Fire Behavior, it says,

Down canyon winds continued through the night pushing the fire front into the north side of Goleta and widening the flanks east and west. Fire also continued to the north into the wind overnight with limited movement.

Planned actions:

Structure protection, create safety zones and establish contingency lines In the Goleta foothills. Construct control lines when conditions permit. Damage assessment from last night will be conducted.

Remarks:

Firefighters are from several agencies including the United States Forest Service and Santa Barbara County Fire Department and several local cooperators including the San Marcos Volunteer Fire Department. The California Highway Patrol, Santa Barbara County Sheriff’s Office, and the American Red Cross are assisting. ICP has been established at Earl Warren Showgrounds. Dos Pueblos High School will remain a staging area.

Current wind is gusting at 30mph from the north (down the mountains, toward Goleta). The temperature is 75° and the humidity is 25%.

InciWeb has no maps for the fire, but does suggest visiting these sources:

It’s sad that InciWeb remains both slow (often overwhelmed) and behind its own curve. I’ve had a number of email exchanges with folks working on InciWeb, and have great respect for the hard work they do within what is essentially a bureaucratic morass. I think the lesson here is that we have to do our best with many sources, and the messiness that involves.

Somewhere among the sources above I read that an aggressive aerial attack was planned to start at dawn this morning. I’m too far east (~5 miles) of the fire to see that; but it helps that Santa Barbara’s airport is in Goleta itself, almost next to the fire, and is home to one of the main Air Attack Bases for the U.S. Forest Service. Here is a photoset I shot of that base, and the P3 Orions used for bombing fires with supressant. I am sure these are in use right now.

Finally (at least for now), I want to say that I’m optimistic about this fire, even though I must disclaim any qualifications for that other than as an amateur observer. I feel a need to do that because I’ve also shot photographs that could easily be seen as scary. These two sets, for example. Please note that I shot those with a long telephoto lens to maximize the apparent size of the sun — reducing the apparent distance between subjects in the photo (such as Mission Santa Barbara, the fire and the Sun). Also because, hey, I wanted to take good photos.

Speaking of which, I also shot the fireworks from up in the hills last night, where there was also a pretty rocking party. Life goes on.

Tag: sbgapfire.

I’ve loaded too many pictures onto this blog, so for this round I’m going to just point to shots elsewhere: in this case to a photo set of  maps built with .kml files from the MODIS Active Fire Program and Google Earth.

The latest one, from about 6pm this evening, has fewer active hot spots than the previous one from 4am this morning, or the one before that from yesterday afternoon. Not sure how to interpret that, but whatever. It’s data.

This afternoon we took a walk along the beach, where hundreds of families and other social groups had set up homes and kitchens and play areas along the beach and in the park, in preparation for the fireworks tonight. It’s an annual festival, and a lot of fun. There was hardly a sign of the fire, since the wind was mostly onshore.

But this evening the wind shifted, and now we’re getting orange clouds of low smoke and ash fall.

The fire hasn’t stopped the fireworks though. Going next door now for a party. Watch for pictures of that show too.

Tag: sbgapfire.

So now it’s time to put lessons to work. The Patient as the Platform is my latest post over at Linux Journal, and it proposes something that goes beyond merely giving patients control of their health care records. (As do, say, Google Health and HealthVault.) Specifically,

I believe that having a data store for health records is a necessary but insufficient condition for the true independence and control required for each of us to be the point of integration for the health care we get, and the point of origination for controlling that care — for getting second and third opinions, for summoning data across bureaucratic boundaries, for actually relating to the systems that serve us, rather than serving as dependent variables within them.

For patients to become platforms, we need more tools and capabilities that are native to the patient. All of us need to be able to walk around the world with the ability to jack into any health care system and drive it. How? I don’t know yet. I’m still new to this. But I do know that these are capabilities we need to add to ourselves, as independent drivers of health care services. And that these must be based on free and open standards and code.

The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.

It’s a angle, of course. And it concludes with the same pitch I’ll give here. If you’re interested in putting a shoulder to this boulder, or to weigh in on any of the other development efforts we have underway, come to the VRM Workshop on July 14-15 at Harvard. That page is short on details, but we’ll be filling them in shortly.


In the hospital I had neither the means nor the energy to get pictures from my little Canon point & shoot to the blog. But I’m home now, so I just put up a small set of shots I took there over the last week. The ones with my face show a happier guy than I was most of the time there.

It’s great to be out. I’m still anemic, jiggling with fluids and amazed at how much my muscles hurt in wierd ways just from climbing stairs. But I’m on the mend and looking forward to getting back to Real Work gradually (I need lots of rest), and to talking and writing about stuff other than sickness.

Meanwhile, thanks to everybody who wished and prayed me well. It worked. Now let’s keep doing the same for our buddy Maarten. Somewhere I have pix of my conversation via Skype with Maarten and Lori this morning, which I’ll add to the photoset.

I’m almost old. Sixty-one next month. But old enough for the wear to do more than show. It’s performing now. The trick to longevity at this point is to dodge the complete failure of any one of many systems that are all wearing down. Aging is fatal, and the number of single points of failure is not small. Combined ones multiply that number.

It seems like ten years ago that I was thirty. Life is short at its longest, and it goes fast, especially if you’re having fun.

Which brings me to my point. Almost.

It’s a matter of genetic luck that I’m not a drinker. A little beer and wine, but that’s about all my body can take before it says No More. Been that way since I was young. Drugs have also always been unpleasant for me. Smoking didn’t appeal in any case, but my father’s addiction to it — and the discomfort it caused the rest of us, for example when sharing a room or riding in a car — made me determined never to do it. And all those are reasons I’m alive today.

The other people in this ward, the one I’ll leave after I scarf one last free meal — don’t look so good. It’s a cardiac ward. When I walk past the nurses’ station I look at the screen of EKGs etching their green pulsed lines, one for each patient. None look good, or they wouldn’t be here. Alarms go off all the time. The patients look terrible. Even if they’re not old, they look it. One more reason I want to get out of here is to stop hogging a room that a needy patient could fill.

So I was talking to one of the nurses. What brought most of these patients here? Smoking and drinking, was the short answer. Reminded me of what a doctor friend told me many years ago. “Without tobacco and alcohol, you could close half the hospitals.”

We can’t get rid of stuff that’ll kill us in the long run. But we can choose not to indulge them.

This last week a lot of people have told me that stuff I say is important to them. Sometimes I’m called “influential”. If I can influence one young person to quit smoking or drinking heavily — for the duration — I’ll be happy.

If you’re lucky you’ll all be as old as the folks here some day. And if you’re smart, chances are you won’t be laying in a place like this.

Lasting

I still have three of these, my MRI says. So, for the first time, I’m watching The Last Lecture, with absolute intentions not to give my own Last Anything for another few decades. Highly recommended, by the way.

People have been asking, so here’s the update.

I’m due to start “clear liquids” in the morning. I was allowed to start tonight, but decided against it because if something goes wrong I’m not sure the slim night crew can handle it. (Not a knock on this hospital, just the Way Things Are in the hospital biz.) I have been off food since a week ago yesterday (starting with prep for the procedure that put me here last Saturday). One more night won’t hurt. Also, for what it’s worth, I have not received “food in bags”, but rather various other fluids. The bag closest to me says “5% DEXTROSE and 0.9% SODIUM CLORIDE”. Stuff like that. Yum.

We seem to be past the blown vein problem (blew four in 24 hours, filling my hands and arms with stuff). Both my hands are still puffed up and my right arm is down to about 1.5x the volume of the left.

I have little pain. This is the key, and an important goal. I’m otherwise pretty wasted and very anemic, mostly because I’m already a little anemic in any case and all these fluids have only thinned my blood out more.

My pancreatic enzymes, liver chemicals and other indicators are back in the normal range. For me. I’m not normal, but it’ll do.

And I’m looking to get out of here on Sunday morning. And taking Suzi‘s advice as well, I hope. Her blog, A Pain in the Pancreas, is a big help.

Bonus link: Wierd Al’s Pancreas.

Also a warm shout-out and a big hug for my partner in recovery, Maarten Lens-Fitzgerald, who is now deep in the Tunnel of Chemo. I’m gonna get through this thing a lot sooner. (Though we still don’t know what the “cystic lesions” on my pancreas are. And won’t for another month or more, since I doubt I could tolerate another endoscopy without repeating the last week. Not soon, anyway.)

What she said

Francine Hardaway:

But I, as the widow of a physician, a mother, and an unlicensed practitioner of American healthcare system mechanics, want to use this moment not only to wish Doc the best, but to draw a lesson: NEVER GO TO THE HOSPITAL ALONE. Take an advocate with you, and try to make sure that person is a New Yorker and very aggressive. Ask a million questions, and get your loved one the attention he/she needs.

I love the New Yorker line. Read the rest of the post. Wise stuff, all.

From hunger

A sure sign I’m getting better: craving food. My wife mentioned taquitos a few minutes ago and my mouth watered immediately. I wanted to walk over to Jose’s right then, barefoot in my hospital gown.

We won’t start until tomorrow, my GI doctor told me yesterday, no matter how good I felt. That’s cool. What’s one more wait after eight days of starvation?

Not everything has gone perfectly. I’ve had three IVs “infiltrate”, and my right arm is still swollen to odd dimensions, filled with fluid that should have gone in a vein. But I slept last night without drugs, which was cool, and I’m clearly on the mend. Can’t wait to gtf outa here.

Differences

Everybody’s different. That’s the problem. Medicine and medical care, however, isn’t about that. They treat templates. Differences are accounted for, such as in my case, where I had a 1-in-20 chance of developing pancreatitis. But I weighed the odds, signed the consent form, and got to be that 1. So differences still matter. None of us is a template.

I’ve always had hunger pains. These were different from the feeling of hunger but they came at the same time. Certain other family members also have them. I’ve looked many places on the Web for answers to what my hunger pains actually are, with slim results. “Stomach acid” is the main suspect. But other people have that when they get hungry too, without the pain. What’s different in my case? The doctors say “That’s a good question”. Whenever somebody says that, they don’t have the answer. Would this condition have suggested that I might be sure to get pancreatitis if the inside of my pancreas was probed? I’d say yes, because that’s just instinct. I don’t know.

I tend to be prone to minor problems with what TV ads used to call “irregularity”. In both the liquid and solid directions, if you know what I mean. Was this a harbinger as well? Especially since I had spent more than a week prior to this event fighting irregularity of the liquid sort? How?

Anyway, pancreatitis in me was manifested, principally (though among other symptoms) by hunger pains in the extreme. Without the hunger. What does that tell us?

And what does it tell me now that my hunger pains (which are now associated with pancreatitis) are accompanied by actual hunger — not a lot of hunger, but some?

So, I have questions. Which means I’m feeling better. I still have a long way to go. Four bags of fluid now drip into my left wrist, and six colored wires run from a heavy portable telemetry unit to sticky tabs on my chest and back. I keep a spitoon by my side and dose my bathroom visits with choreographic precision, since wiring and tubing management — not to mention work with craphats and pisshats — makes every vist a complicated ordeal.

As of tonight I will have gone a week without a meal. And the end is not in sight. Yet.

No jokes

[Note: I wrote this yesterday, 18 June. But the blog wasn't working. Now (1pm, 19 June) it is.]

Yesterday, when I started feeling better, I had dozens of one-liners about the absurdity of hospital life. Crapping in “hats” for example. One’s humor gets low here. Mine especially. It also helped to have friends stop by, chew the fat and joke around.

But by late evening I was at the “one step back” stage, after two forward. Since then, lots of pain, barfing, discomfort and worse.

I’m maybe getting better now, at least in some ways. I also have so much “fluid retention” that I look like the Michelin guy. My weight is now well over 200. I’ve never broken 190 before and was dropping below 185 when I got in here. Given the fact that I’m eating my body rather than food, who knows what my “real” weight is, other than absurd in any case.

Finding the time, and the means, to take or make calls is nearly impossible. Blogging and twittering are hard too. So this is a group message of thanks to all who wish me well (and there are so many of you… I’m lucky that way). Not sure how much more can be done. I am sure that the hospital folks and local relatives and friends will try to do it.

And we’ll see how it goes.

So here I am at 3am for the second day in a row, taking a moment betwen hits of Dilaudid to do something that was for many years normal for me: writing something.

I have a new normal now, and it’s getting old. I’ve lost count of the wires and tubes running from my body to mechanical and electrical instruments. I haven’t eaten in close to a week, and my intake is entirely from bags of liquid dispensed by “smart pumps” that beep loudly and often for what seems most of the time to be no reason at all. I’m creepily cool now with being 90% helpless, even as I’m close to 100% hopeful that I’ll get past this thing, which remains pancreatis, with complications, the latest of which are fluids in my abdomen, with encroachment on my right lung: the same one that took a hit from a wayward embolus a couple months back, when I first made my acquaintence with this hospital.

It’s a Harvard teaching hospital, which means that a procession of young doctors come through, each with a fresh line of inquiry, few of which, when fulfilled, contributes to an institutional memory. Most of the doctors I’ve seen here have been only once or twice. Nice folks, all, however. And all less than half my age, it seems.

My new room is a solo one. I miss the company of other patients, but I do like some of the posh features, such as a toilet that has more than five square feet of flooor space. They moved me here so they could monitor me more closely. I do appreciate that. But the reason creeps me a bit: so I won’t get pneumonia or chronic pancreatitis of the sort Suzi reports here.

Well, that’s about all I have energy for. Look for another report in a few hours, I hope.

And thanks again for all your kind wishes. I’m really looking forward to returning to normal normalcy.

They’re putting me on this now, so I’ll feel no pain and breathe more deeply. Which I’ll need to prevent a slightly collapsed lung from turning into pneumonia. That’s on top of the pancreatitis.

All from an inconclusive diagnostic procedure.

Well, my experiment with staying off morphine didn’t pan out. An x-ray that required laying on my very tender belly this morning put me over the edge.

More reporting (and hopefully on matters other than health) when I feel like it. Pretty spaced out right now.

I have three bags hanging from a rolling pole next to my bed here at the hospital. These Y down do a pair of IV needles, one in each arm. The two big bags are for hydration. The third? I dunno. (The nurse just told me it’s magnesium.) Since visiting Amsterdam two Wednesdays ago, I’ve shed a lot of liquid, to be polite about it. Now I can’t take in any liquid, or food, at all, which is one way they calm my innards and stop my pancreas from freaking out, which is what it did yesterday morning as a delayed reaction to the endoscopic retrograde cholangiopancreatography (aka ERCP) exam I had here at the hospital the day before.

One in twenty endoscopic probings of a pancreas results in pancreatitis, and it was my misfortune to hit the bulls eye. I woke up with Xtreme hunger-type pain in my belly yesterday, without the hunger. Nausea came later, and a visit to the emergency room not long after that. Now I’ll be here until the pain stops and hunger returns. Those are the Good Signs. So far, not even close. In fact, the pain remains bad enough that morphine doesn’t do the full job. It just reduces the pain to a point where I can do some of this. Which I’m doing between working on some writing assignments. We’ll see how it goes.

Meanwhile, the good news is that This Too Shall Pass. (Better it than me.)

Alas, I shall miss Supernova, and perhaps more than that. We’ll see. I still hve high hopes of flying west midweek or so, although that seems mighty ambitious from where I sit (actually recline) right now.

Two days ago I had a colonoscopy. The doctor found and removed a polyp. Routine stuff. Today it was what I guess is called an endoscopic retrograde cholangiopancreatography. The first looked up my ass, the second down my gullet, in this case to look inside my pancreas to see if cystic lesions appearing in an MRI were communicating with the pancreatic duct. Nothing was found. Not sure what that means. Probably nothing.

Both involved so much sedation that I remember approximately nothing from either. Well, I remember waking up enough to see the polyp on TV. It looked like a sea anemone. I slept through the second procedure entirely, or forgot it thanks to the drugs’ amnesiac effect.

There is a risk of pancreatitis with the latter procedure. Makes for icky reading. It does concern me that my tummy hurts a great deal — enough that the work I hoped I could get done tonight is nowhere near my mind. My tummy always hurts when I’m hungry, and it hurts the same way now, so I don’t know what the deal is there. All I can eat is sherbet; and all I can drink are broth and water, neither of which leave me feeling filled.

I can’t sleep. And all I can think about is health shit. Or vice versa. So I blog. Comes naturally.

Got a lot of travel coming up. Supernova in San Francisco. VRM-related stuff in Utah. “Home” for a day in Santa Barbara before going to London and Copehagen for business and more VRM-related stuff. (Reboot is at the latter.)

People tell me that travel is bad for me, but the truth is that I love it. The thrill of flying over and studying the Earth never leaves me. In fact it only gets more interesting every time I fly somewhere because every flight is a chance to learn more about what’s on the ground — and whatever else is in the sky. Such as rainbow ice and auroras.

Anyway, all this stuff is about getting older. The failings of the body and the enrichment of the mind. Another of life’s wonderful ironies.

[Later...] Meanwhile it turns out that Maarten’s tumor is a mediastinal germ cell one. It’s treatable, and he goes in for chemo shortly. As cancer goes, that’s good news.

I didn’t really know Maarten Lens-Fitzgerald before this last week, except by emails and a delightful interview he did with me at in December. But I fell in love with the guy after he and his associates brought me to Amsterdam to talk at Mobile Monday and do a couple consulting gigs there (which he set up for me). Besides being a smart guy and a great host, Maarten is just a good dude and a true mensch. Gracious, caring, upbeat and much more. You can see it in these two photosets from MoMo. Maarten, his family and whole social network made my visit to Amsterdam a joy from start to finish. It’s a great city anyway, but it’s lucky to be graced with folks as good as this whole bunch.

On Wednesday, the day I flew home, Maarten went to the doctor to check out a coughing problem. Turns out he had a tumor, bigger than his heart, right in front of it. Since then he’s not been far from my own heart, as well as my mind.

I wasn’t going to write about it, because I didn’t know how private Maarten wanted to be. But it turns out he’s both tweeting and blogging what he calls his new journey. So is his wife, Lori. So we’re together with him on this thing. Such is the nature of what Twitter calls following.

He’ll find out more about the tumor tomorrow. I’m praying hard it’ll just be an oddball thing they can cut out and be done with.