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Elephant Man
January 8, 2008 6:47 PM   Subscribe

Huang Chuncai poses before his second tumour operation. (slideshow)

here're some pictures from the first operation, cf. beauty and success, i.e. lookism
posted by kliuless (43 comments total) 1 user marked this as a favorite

 
Dude. That's as bad as treant guy and toenail hands combined.
posted by dersins at 7:02 PM on January 8, 2008


A bit of warning on such shocking photos would have been appreciated. Probably not photos for the boss or a client to see.
posted by vaportrail at 7:02 PM on January 8, 2008


Poor man. It's astounding to think that the first set of pictures is an "after" of what was originally much worse.
posted by frobozz at 7:06 PM on January 8, 2008


That poor guy. I hope the surgeries can help him. He looks so uncomfortable.
posted by Hildegarde at 7:13 PM on January 8, 2008


Fascinating.
posted by CitrusFreak12 at 7:13 PM on January 8, 2008


Wow, just wow.

And metafilter isn't probably something you want to boss or client to see. Do some work. What are they paying you for? And I would imaging the photos aren't big enough to where anyone else can see them, unless you, your boss, and the client are all suffer together.

And before other people scream, "You should have WARNED me is was gross!" I say to those people, it says "tumour operation" in the subject.
posted by cjorgensen at 7:15 PM on January 8, 2008 [2 favorites]


I dare not look, lest I puke my dinner, (I have a severe phobia of viewing such things) but I'd like to note that The Elephant Man most likely did not have neurofibromatosis, but rather Proteus Syndrome, an even rarer condition. It's easy to connect this to societal attitudes about beauty, but certain conditions entail much more than mere subjective ugliness. I'm very glad he's getting help.
posted by StrikeTheViol at 7:18 PM on January 8, 2008


Amazing pictures. He looks like the last act of "Akira". I'm fascinated by these people with tremendous, correctable deformities who live in isolated areas-- it seems they're willing to live with increasingly staggering problems until somebody from the outside comes by and says "you know, we can actually do something about that".
posted by phooky at 7:21 PM on January 8, 2008 [1 favorite]


From the comments (some of which are the predictable Youtube style crap):

"Well this certainly puts things into perspective. I was upset this morning because I have a pimple on my chin, now I feel a little ashamed."

Ain't that the truth...

Amazing and really rather sad. The fact that the disease knocked all his teeth out, presumably by the physical force of the growth, from the wording, is extraordinary.
posted by Brockles at 7:21 PM on January 8, 2008


Also, I find it kind of endearing that, with all that, he wears a wig.
posted by phooky at 7:23 PM on January 8, 2008


This is really not the typical appearance of neurofibromatosis- most people with that illness are much less severely affected. The photographs look more like Proteus syndrome.
posted by ikkyu2 at 7:25 PM on January 8, 2008 [1 favorite]


awww. There's a Tibetan expression for compassion, nyingje, it means noble heart. It's usually an exhortation when one sees something awful, the kind of thing that makes one lurch a bit in one's stomach, an empathic wince. Hadn't said it in some time but it popped out of my mouth when I saw the first photograph. ouch, ouch, ouch. How hard life must have been for this poor guy.

So Elephant Mannish. ah, thanks ikkyu2, so that's the name of Elephant Man's problem, Proteus Syndrome, not only neurofibroma as stated in the article.

I hope the sereies of operations work well for Huang Chuncai.

Thanks for the compassion arousing post kliuless and for teaching me a new word, lookism.
posted by nickyskye at 7:44 PM on January 8, 2008 [3 favorites]


Heartbreaking. That poor man.
posted by Auden at 7:50 PM on January 8, 2008


Sounds like he's growing some big ole plexiform neurofibromas. Obviously an extreme example. But it could be worse (and still could be for him). NF1 patients (Von Recklinghausen Disease), especially ones with plexiform neurofibromas are at a much greater risk for developing Malignant Peripheral Nerve Sheath Tumors.

Here's one that I had a few years back (warning: forearm amputation specimen). (It's one of my favorite cases.) It was metastatic at the time of diagnosis in a NF1 patient in their third decade.
posted by i_am_a_Jedi at 7:54 PM on January 8, 2008 [2 favorites]


There's a Tibetan expression for compassion, nyingje, it means noble heart.

How do you pronounce that? Can someone write that phonetically?
posted by Cool Papa Bell at 8:24 PM on January 8, 2008 [2 favorites]


When I clicked on the photos and then the article I was struck by two things. One, that the human body is filled with an awesome mysterious power I think we mostly take for granted. The second thing that struck me was the universality of cruelty. It seems everywhere in the world if you are a strange looking six or eight or ten year old you will be mocked and derided by others and made to feel miserable.
I hope this operation provides him with some relief.
posted by hecho de la basura at 8:47 PM on January 8, 2008 [1 favorite]


holy shit, that just plain sucks for him
posted by pyramid termite at 9:20 PM on January 8, 2008


Kinda reminds me of the fathead fish.
posted by puke & cry at 9:32 PM on January 8, 2008 [1 favorite]


*wince*
posted by Phire at 9:32 PM on January 8, 2008


Looks more like Pufnstuf syndrome to me.

sorry
posted by fleetmouse at 9:37 PM on January 8, 2008


How do you pronounce that? Can someone write that phonetically?

NING-jay is close enough. Closer is maybe KNEEING-jay.
posted by dhartung at 9:37 PM on January 8, 2008 [1 favorite]


"Why the long face?"
posted by Floydd at 9:42 PM on January 8, 2008 [1 favorite]


Poor guy. He's a walking advertisement for atheism if ever I saw one. I hope that operation brings him relief.
posted by i_am_joe's_spleen at 9:50 PM on January 8, 2008


"Why the long face?"

This is me kicking you in the balls and saying, "Hurts, don't it?"
posted by Cool Papa Bell at 10:05 PM on January 8, 2008 [10 favorites]


I am really interested to see the final outcome of this series of operations, assuming they share it. I really hope that they are able to provide some relief to the various physical ailments this poor guy no doubt feels as a result of this condition. Looking at the photos, my first thought was actually "his back and neck must be killing him." And then, "aw, man, he must not even be able to go to the market without getting stared at and harassed."

Here's hoping that none of us are ever effected by a painful deformity that makes us interesting enough to be the subject of a front page post at Metafilter.
posted by Joey Michaels at 10:11 PM on January 8, 2008


Stunning. There is something endlessly fascinating about the human condition, both in its beauty and divergences. Like Phooky, I found it touching that he chooses to wear a wig. It makes me mindful of all the conscious and subconscious acts I do daily to "fit in" and shames me no small bit about ever engaging in self-pity over my perceived failures to do so.
posted by bigskyguy at 10:19 PM on January 8, 2008


I've worked in and around the non-profit sector in China for some years now. Through a job at a civil society magazine I met an amazing guy who has a similarly (though when I met him, not quite so dramatically) disfiguring condition. A poor peasant boy, he's had some kind of brain tumour young. This has caused severe skull deformities and giantism - he was well over seven feet tall in a country where average height is a bit less still than the West. With that and his big heed he certainly drew looks and me (tall ginger white hippy) and him used to make a right pair going out. Pressure from the tumour had also cost him his sight. Doctors had also given him only about three years to live, but that was about a decade before I met him. He was a testament to the power of positive living.
Poor as they were, his family had hocked everything trying to get him treatment, but limitations of money and available medicine in his poor backwater had meant this hadn't helped much. He felt bad about being a burden so had left home at fifteen to work in dirty dangerous copper smelting to pay for his palliative care, despite suffering considerable ill-health from his worsening condition. He was in beijing because finally he'd got to see some specialists here who'd removed part of the tumour and corrected some of the deformity, though his sight was not restored and he remained definitely an odd guy to look at. He'd used the new lease of life this offered to volunteer in a hospice, where his unflagging enthusiasm for life was of enormous comfort to other people suffering from terminal conditions.
He was a bigger man that me in more ways than one.
posted by Abiezer at 11:24 PM on January 8, 2008 [4 favorites]


There's a woman who looks like this in Bangkok. I've seen her a few times, wandering the streets of the downtown office district with a handler, begging. She earns a lot because the extreme shock of her condition makes people feel so bad that they rush to put large amounts of money in her cup. Her condition is so bad that she can't walk alone because the flesh of her face covers her eyes. There was a rumor that an organization had offered to help by paying for surgery, but her family turned it down. That's because she was worth more to them in that condition, as a high-earning beggar. If she was normal she would be worthless.
posted by Kraftmatic Adjustable Cheese at 11:48 PM on January 8, 2008 [3 favorites]


This brings to mind the story of Jose Mestre, a portugese man who is also horribly disfigured by an enormous facial tumor. In Jose's case however, the condition has been prolonged and exacerbated by his beliefs as a Jehovah's Witness which prevent him from using transfused blood and, as a result, from undergoing operations on the tumor. There's another article about him here with more photos. [Warning - photos may be NSFW and may be quite upsetting]

I'm glad that Huang Chuncai is finally getting treatment for his condition although I'm a little surprised that his family will have to foot the bill for the surgery. I thought that there was socialized medicine in the PRC. It's also heartening to know that Chuncai's parents didn't sell him to the freak show people when they offered to take him off their hands.
posted by ooga_booga at 12:07 AM on January 9, 2008


I thought that there was socialized medicine in the PRC.
What there was all fell apart, particularly quickly in rural areas, in the "reform and opening" era that began in the late 1970s. There's a plan to re-introduce universal coverage this year, with massive central government inputs. it's not quite the European social welfare model in its current incarnation, but that is the model China has chosen to aim for. I'm delighted, because I have watched the debate swing between the social democratic model and a US private style conception, and it's good that the forces of right and reason have won out.
posted by Abiezer at 12:15 AM on January 9, 2008 [1 favorite]


Thanks for the clarification, 'Biez!
posted by ooga_booga at 12:20 AM on January 9, 2008


Dang it - my second link got borked. The article with more photos that I'd meant to link to is here.
posted by ooga_booga at 12:22 AM on January 9, 2008


I too immediately thought of Jose Mestre. I read his surgeon is going to use a staged procedure (well they are all staged in an advanced case like these, but more staged if you know what I mean), to avoid if at all possible the need for a transfusion.
posted by Wilder at 12:37 AM on January 9, 2008


Abiezer, thanks for the moving and uplifting story that was also beautifully told.
posted by nickyskye at 12:49 AM on January 9, 2008


You're the mover and uplifter here nicky! Let's get that straight right now :)
posted by Abiezer at 12:57 AM on January 9, 2008 [1 favorite]


It turns out it's fake, there actually is a god, and we can all go back to whatever we were doing.
posted by Citizen Premier at 2:58 AM on January 9, 2008


I thought that there was socialized medicine in the PRC.

Nope. No pensions, nationwide welfare or income tax (on individuals) either.

There IS a plan to introduce basic universal health care across the country... by 2020. The plan was announced while I was there.
posted by clevershark at 8:44 AM on January 9, 2008


No pensions, nationwide welfare or income tax (on individuals) either.
There is income tax and welfare in the form of a basic living allowance (底保) all urban areas now, clevershark, and dibao is being extended to many rural areas. There's also a troubled pension scheme for urban employees. The government is also looking to expand the provision of subsidised housing.
posted by Abiezer at 10:40 AM on January 9, 2008


Interesting link about income tax... I asked a couple of tour guides and they told me there was no income tax. That being said after being there for a while as a tourist one gets the sense that they know they can tell you anything and you wouldn't really have the ability of knowing whether they know what they're talking about or not.

Then again if tax is handled by the employer, the employee wouldn't really know whether there is tax or not. It sounds suspiciously like a payroll tax more than straight income tax.
posted by clevershark at 12:52 PM on January 9, 2008


Yes, it's payroll, like what we call PAYE in the UK for the most part as I understand. I'm a freelancer and I have resigned myself, after several fruitless fights, to just letting some clients take tax off my fee, even though I explain I should be filing my own tax. China's not really set up for that yet as far as I can tell.
I would also imagine tour guides might be earning below the tax threshold, or just dodging it.
posted by Abiezer at 1:00 PM on January 9, 2008


Ah, that explains it then. I saw some reports on CCTV9 about the living allowance as well, although the reports seem to indicate that it was somewhat of a new program (in October 2007). Maybe it just happened to be new in the area where the report was made.

My brother lives in Shanghai (he was in Beijing for about a year before that) so I like to take an interest in these things.
posted by clevershark at 1:16 PM on January 9, 2008


aw, Abiezer, thanks hon. :) But you did tell a really beautiful story.

I've been thinking about the lookism thing for a couple of days now. I think the purpose of needing attractive features, good looks, as in animals looking attractive to each other, signified good DNA. Good breeding stock.

In humans a female's pretty face, curvy shape and male's handsome, muscular bod meant their child would be more likely to survive. And now with so much of our lives behind the internet screen, we are attracted to spending time with each other for different reasons. The planet is packed with humanity. It makes sense that internet porn is more available, as I think that is less about interest in human contact and more about release for the nervous system. It would make sense to me that lookism will decrease as people are attracted to connect with each other on the web for non physical reasons.

NYC is such a classic place for lookism to diminish. India as well. So many nationalities mix, so many colors, sizes, shapes, features, that there is less an idea of a typical human being. I like that a lot.

The internet is changing things too because people get to come to feel for each others' minds more. Not disembodied minds because I think there is some sort of heft to people's way of communicating that indicates their physical presence. But it's a presence that is less connected with what has passed before as typical attractiveness.

Cool Papa Bell , As for pronouncing nyingje. I'd suggest saying the ny part like the ñ in the Spanish word mañana, which means tomorrow, sounds like manyana.

Or when one says lasagna, the gn part of the word, sounds like ny.

nying-jay.
posted by nickyskye at 6:25 PM on January 9, 2008


Here's a tale of a West African lad who had a large facial tumour removed. Here's another story about a Vietnamese boy who was brought to Canada for surgery, but Canadian surgeons were nervous and he has now been 'adopted' by Boston physicians.
posted by fish tick at 6:56 PM on January 9, 2008


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