The Future of Zittrain Has Not Been Stopped
March 15th, 2010 | by jz | Published in Future of the Internet | 39 Comments
First things first: yes, I’m in the hospital, but I’m OK. (I’m blogging, right?)
The details: I found myself in the hospital last Thursday thanks to unexplained fevers that spiked at night and were gone by day. After a bunch of tests my unfailingly conscientious doctor recommended (well, insisted) I get to the hospital for yet more. By Friday morning I was apparently a very interesting case — offering symptoms that were both general enough (just the fevers) and worrisome enough (a couple numbers very off on some blood tests) that no one could figure out what was going on (put in medicalese that I’m rapidly learning enough of to be dangerous, there was a large “differential diagnosis”) — and yet there was some sense of urgency, especially if what I had was an infection that could go systemic.
Friday afternoon resulted in a procedure that looked to be moderately serious (both it and what kind of infection they were expecting to find), and by Saturday morning people were even more puzzled: there was no infection yet found, but the fevers remained. (In the meantime, none of the immediate risks from the procedure materialized.) A friend started a blog to keep friends and family updated, under a light password, and then a colleague had the inspired idea of asking a medical blog to put out a gentle call to its audience — primarily doctors — to help in the diagnosis given what a tough nut it was to crack. I mean — I do believe that many eyes make all bugs shallow, and the truly fantastic team of doctors here was OK with a blog being kept. (The case has involved, from what I can tell, multiple specialties from across the hospital and beyond, and every single doctor I’ve encountered, including the hospitalist who manages the case, has been fearsomely smart and intensely engaged.)
The password went away, and initials were used for me — we didn’t use my name because it wasn’t important who I was, and there was no reason to make a few days’ blogging of health issues googleable with my name as a search term forever! (I know, here I am blogging, but …)
Sunday morning Lessig tweeted that JZ was ill and why was a mystery — all true. The blog produced some amazingly helpful comments from people and doctors at large, including references to two discrete academic journal articles — one from a Korean medical journal from 1994! Thanks to the Net I had a copy on my PC and then e-faxed to the nurse’s station on my floor in a matter of minutes. In the meantime, over the course of today (Monday the 15th), additional results have come back to help narrow the diagnosis in a properly documentable and formal way — one that’s converging, it seems, to the obscure Korean article. To be clear, the terrific doctors here have been methodically arriving at this diagnosis already.
If that is indeed the diagnosis — and more tests are needed to rule out some other long-tail possible causes — the prognosis is good — certainly much better than some of the diagnoses floating around last week!
Fast forward to about an hour ago, when the good folks at BoingBoing echoed Lessig’s call for assistance — drawn from an intermediate source that had already put 2 and 2 together and turned Lessig’s “JZ” into … me, no doubt without even thinking there was any difference. So then it became: “Jonathan Zittrain is really sick and needs help finding out why!” I hope you can see from the full context that that’s both true — it’s a transformation of a tweet that was true at the time, though not meant to be bounced to the whole Net, which is why I hadn’t tweeted it myself — and yet also now false/irrelevant: the diagnostic phase is drawing to a close, and the kind of out-of-the-box brainstorming we’d hoped to draw from targeted crowdsourcing had, wonderfully, happened.
There’s been no desire to trumpet to everyone that I’m illin’, nor any need to do something like raise $100,000 for a transplant or find a matching marrow donor through a distributed appeal to the world.
So — I need to practice what I believe and write about in places like The Future of the Internet, Chapter 9, paragraph 91. : ) (I hate to post something not topical about the Internet on this blog … and those who know me or follow my work know that I don’t tend to put much of my personal life into either my blog or my tweeting. Honestly, I’ve yet to figure out how to navigate that line.) Trying to put a cat back in the bag is not easy, and I’m no fan of the memory hole.
That’s why I’m posting this now — BoingBoing has kindly taken down the post (since the call for help was no longer timely, and because I hadn’t previously been identified), and the friends-and-family blog about my daily adventures in the hospital (no complaints at all about the hospital experience, actually!) will end up back behind a password in the obscurity where it belongs.
I’ll try to be responsive to comments if any are left here, and want to close with a heartfelt thanks to those who have helped sort out this truly puzzling situation, and who have shared their good vibes and support.
See you soon at some conference where I’ll try to scare you about the iPhone even as I use one myself,
JZ
aka Jonathan Zittrain
March 15th, 2010 at 10:07 pm (#)
What I would care about —because I’ve met many doctors since we met two years ago (friends, no major health concerns) and I tried to understand how your predictions match their lifestyle is… does crowd-sourcing change anything? Most of those whom I’ve asked raised many issues, mostly incentives (can be covered) and responsibility. I assumed having an attending responsible, that has access to aggregated opinion would have been the best combo — but I was wrong, in the sense that responsibility comes with decision, decision with expertise, expertise is too rare to demand the attending to have enough… Contradictory statements when put in perspective with the current state of affairs (in anything, crowd-sourcing would prevent attention-deficit from inexperienced attending, etc.) but interesting when you include common gregariousness.
March 15th, 2010 at 10:16 pm (#)
Wow, JZ. It’s like a real life version of House, except instead of Hugh Laurie, you had the wisdom of the masses. I’m glad that things seem to be on the rebound. Good luck and have a speedy recovery!
March 15th, 2010 at 10:22 pm (#)
Glad you’re back on track. Learning of a friend’s sickness through Boing Boing is both surreal and a bit scary.
March 15th, 2010 at 10:23 pm (#)
Z -
Thanks for the awesome update. Great that you’re doing OK. (Honestly, I was concerned by a retweet of a retweet of a hat tip to Lessig’s tweet that implied that an alien had attached itself to your face).
Oh, just one more thing: This whole Tumblr –> boingboing thing sure makes a strong point about the difficulty of de-identifying health information. Right in the middle of a huge debate over privacy, you’re generated a fantastic anecdote about the limits of anonymization.
It just seems awfully convenient.
Speedy recovery!
–andrew
March 15th, 2010 at 10:26 pm (#)
We all wish you speedy recovery and deeply appreciate your thoughtful position on how to mix these perspectives…a professor through and through…a teaching moment emerging from personal health issue (I won’t say crisis)…brilliant!
March 15th, 2010 at 10:42 pm (#)
One of my favorite professors, John Sherry, once said, “There’s no such thing as anonymity on the Internet. Only degrees of anonymity.” (But then Z is a very unique initial, if you want more disclosure, use J)
March 15th, 2010 at 11:08 pm (#)
I was wondering if you could share your diagnosis? I have been having fevers for a few months and have been keeping a fever log to give to the doctor. My blood results showed low and elevated levels that were puzzling. thanks.
March 15th, 2010 at 11:19 pm (#)
A teachable moment, indeed! Well done, sir.
I echo the sentiments for a speedy recovery, and hope that tomorrow brings a pleasant discharge from hospital to home.
Kudos to LN!
-Jack
March 16th, 2010 at 2:32 am (#)
Jonathan:
A riveting story and glad to know you seem to be on the way back. Good stuff from SXSW from an old acquaitance.
Aaron
March 16th, 2010 at 2:51 am (#)
In addition to what Andrew said (and hi!), I noticed that the commenters on the blog pressed at the anonymity pretty hard. I think it was there that the first “J” with a “Z” turned up.
In the end, what did the doctors think of this experiment? I’d imagine it’s a constant frustration for doctors, explaining to patients why the information they Googled isn’t appropriate for them or is downright wrong. Is this a rare success story then, or part of a trend that might be useful but also really challenging for the medical community?
-Sally
March 16th, 2010 at 2:59 am (#)
Congratulations on your recovery – which is a great triumph personally, but also a pattern example of class society on the Net. Thousands of children are dying from lack of access to water and food every day (in great part because the current “land grab” and “resource squeeze” for land to grow crops for biofuel, extract minerals for conductors, batteries, cables etc., which uses enormous amounts of water, dams on rivers to electrify cyberspace, etc. etc.), while we, the rich, the educated, the often white males, are profiting from their suffering.
March 16th, 2010 at 3:14 am (#)
But was this the wisdom of crowds — where the crowd has some synergy to reveal what no one member or segment of the crowd knows — or was this simply “human search engine” where if you ask enough people somebody knows the answer? Was the search done as steps through the crowd, refining it as time went on until the article was found?
March 16th, 2010 at 7:08 am (#)
Hi JZ! So sorry to hear and read what you’re going through. I know you’ll have a speedy recovery.
Ken
March 16th, 2010 at 7:13 am (#)
Cyberprof down! The Internet can be a vast karma machine, and you have justly sown and now reaped a ton of it. All best wishes for a speedy and full recovery.
March 16th, 2010 at 8:10 am (#)
Hm, guess you really *are* serious about all this crowdsourcing stuff! If you have to have a medical scare, at least you get a great story out of it… Best wishes for your recovery.
March 16th, 2010 at 8:37 am (#)
[...] the JZ was Harvard professor Jonathan Zittrain, and once revealed, he put up a blog post of his own clarifying the situation, noting that they no longer needed help with the diagnosis, and everything sounds fine (what they [...]
March 16th, 2010 at 9:00 am (#)
First, I am delighted to hear that a diagnosis seems to be in the works – I know how long this has been a disturbing puzzle – and even more so, that it seems to be not too dire.
The anonymity issue is complex. Something needs to attract the crowd for there to be any crowd-sourcing. There a lot of pretty anonymous people out there who have put their mystery symptoms up, in great detail, on various medical sites. Many have gone to drs., and have posted details of their odd test results, but there is no crowd pouring forth diagnoses and obscure journal papers. Boing boing isn’t putting their case forward to its big audience. Having an identity that attracts a crowd is very helpful – but then of course no anonymity…
March 16th, 2010 at 9:22 am (#)
[...] Linus’ Law explains a lot. It explains why bugs in proprietary software products can languish for years (too few eyeballs!). It provides a reason to believe that, over time, entries on Wikipedia can converge toward accuracy. And, apparently, it’s going to help Harvard Law prof (and cyberlaw giant) Jonathan Zittrain go home from the hospital faster. JZ sets the stage: [...]
March 16th, 2010 at 10:24 am (#)
Please do be sure to let us know when all is well and we can fully join you in the humor. It’s not really fair for you to go first and take all the great lines. (Ok, a few days in the hospital does earn you a head start…)
I’m really hoping that it will turn out to have been the chlorophyll supplements. I want to make a slide for you – showing a picture of chlorophyll supplements with a warning label: “The Future of Zittrain and how to stop it”.
Also, like all freakishly powerful superheroes, you must have SOME weakness, and if like Superman, it turns out to be something green, all the better. All the better. Mwuah-ha-ha!
March 16th, 2010 at 11:06 am (#)
[...] The Future of Zittrain Has Not Been Stopped :: The Future of the Internet — And H… – RT @zittrain A convergence of MD crowdsourcing with local hospital's MD heroes has helped to pinpoint mystery illness – [...]
March 16th, 2010 at 12:04 pm (#)
[...] extraordinary affliction, a nonfictional internet leader — the brilliant Jonathan Zittrain — came down with mysterious symptoms that his doctors were unable to diagnose. Carefully, guardedly, with the cooperation of his [...]
March 16th, 2010 at 12:24 pm (#)
Hello JZ
Hope you get better JZ! take care. kind rgds Ajit
March 16th, 2010 at 1:23 pm (#)
Now I’m terribly curious as to what mysterious illness you had! Please consider posting the whole story, because lots of people would find it interesting. I’m sure I could find some cache of it through digging, but I’d rather read something that was openly shared. And really, unless it was a sexually transmitted disease, what’s there to be embarrassed about? :)
March 16th, 2010 at 1:30 pm (#)
As a follower and admirer of your work, I, too, am also trying to figure out how to navigate that line of being personable but professional on the Net.
Many colleagues and peers of mine have said the best thing to do is to keep your online content “as boring as possible” in order to ensure a positive “online image.” But does that really ensure that you’ll have a positive image when looked upon by your peers?
I’m intrigued by how much of a role one’s online image can play nowadays when looking for or being considered for position of employment. Many of the articles I have read always report how people have lost their job due to a “post they made on Facebook.” Does that imply that if you have a profile on Facebook, you’re more likely to be overlooked because of the liability that inherently exists regarding one’s post?
What are your thoughts on one’s “online reputation?”
March 16th, 2010 at 2:39 pm (#)
hoping you might share your diagnosis, as my dad has just gone through the exact same situation (night sweats, five dumbfounded specialists, et al) and I’d love to see if his diagnosis matches yours. many thanks and wishing you a speedy recovery.
March 16th, 2010 at 3:11 pm (#)
JZ –
So glad to hear that you’re better!!! (or will be soon). Now that you’re almost in the clear, a few thoughts on outcomes:
1) I look forward to seeing this dramatized in a funny lecture format, and I’m curious to see how LOL cats will be worked into it.
2) now that you’re all diagnosed, no need for me to finish medical school!
3) all of life’s answers can be found in Korean medical journals.
Get well soon! And when in future hospital situations, always remember the wise words of Dr. Nick Riviera: “eeeww, blood!” (I would have embedded a video clip but it was blocked due to something called “copyright infringement?”)
March 16th, 2010 at 4:51 pm (#)
I’m glad to hear you’re getting better. But at the same time, part of me wonders if this is somehow going to make an appearance as a final exam problem.
March 16th, 2010 at 11:35 pm (#)
Be well and be in touch
March 17th, 2010 at 12:06 pm (#)
Hi JZ,
Astonishing read. I echo e’s post: a little surreal and scary to read about this (via Above the Law, btw).
Feel better soon!
Laura
PS: Kinda funny how a simple “Z” can make you stand out? :)
March 17th, 2010 at 2:46 pm (#)
[...] with my name as a search term forever!” Zittrain wrote on his blog in a post entitled “The Future of Zittrain Has Not Been Stopped“ (a play on the title of his book: “The Future of the Internet and How to Stop [...]
March 17th, 2010 at 8:12 pm (#)
JZ:
Thanks for the update. You’ve been in my thoughts (and nighmares) since Lessig’s tweet. About 10 years ago, I spent several months in the hospital with symptoms identical to those of yours that have been made public. I underwent numerous invasive tests, and the doctors considered a variety of serious potential diagnoses. Eventually, the fevers subsided and the blood work returned to normal. I was released with the final diagnosis “Fever of Unknown Origin.”
As I recall the helpessness and frustration I felt during those months, I find your experiment in crowd-sourcing your diagnosis to be utterly inspiring. I’m glad that it’s helping you to approach a more certain diagnosis, and though I understand you desire for privacy in this matter, I hope that the cat getting out of the bag helps to spread this innovative approach to difficult diagnosis.
March 18th, 2010 at 3:04 am (#)
[...] with my name as a search term forever!” Zittrain wrote on his blog in a post entitled "The Future of Zittrain Has Not Been Stopped“ (a play on the title of his book: "The Future of the Internet and How to Stop [...]
March 18th, 2010 at 12:42 pm (#)
[...] of Ottawa), Eddan Katz (EFF) and Andrew Odlyzko (University of Minnesota). (Jonathan Zittrain was unavoidably detained, but happily now seems to be on the [...]
March 18th, 2010 at 1:26 pm (#)
[...] ago, Jonathan Zittrain got sick. What followed was a nice little demonstration on the power of the Internet and crowdsourcing: I was apparently a very interesting case — offering symptoms that were both general enough (just [...]
March 22nd, 2010 at 4:45 am (#)
[...] • National Public Radio had an interesting discussion recently on “communicating science in a post-newspaper era”. [...]
March 22nd, 2010 at 11:50 am (#)
[...] It ". His book is now available for download (pdf). At this time unfortunately Zittrain is in hospital and wish him swift and smooth recovery. About the book: This extraordinary book explains the engine [...]
March 22nd, 2010 at 11:30 pm (#)
[...] doctors to help. This example of “crowd-sourcing” produced what Zittrain, fortunately still with us, described as “amazingly helpful comments from people and doctors at large, including [...]
March 23rd, 2010 at 2:16 pm (#)
Search terms: “1994 FUO Korea” pick up giant hemangioma of the liver as a cause of fever of unknown origin — as the first hit on Google. Readily treatable, not malignant. Seems to fit the information provided. Glad it’s nothing more serious.
March 28th, 2010 at 7:16 am (#)
Interesting use of “crowdsourcing” in regards to diagnosing medical issues – raises a new stem of questions.