Fibular Hemimelia & Amputation--

Whenever I see a new search engine recommended, I usually plug "fibular hemimelia" into its search box for my trial run. The condition basically boils down to being born missing a fibula--and often (though not in my case) some toes. Other leg issues, like a shortened femur, missing ligaments, etc., may also be present (as in my case).

"fibular hemimelia" in Wheeless' Textbook of Orthopaedics

When I was born (1974), amputation was by far the most common treatment. The alternative: a lengthy series of surgeries, many experimental, designed to promote tibia growth and counter a leg length discrepancy. My right leg's growth was "stimulated" in a variety of ways including a fasciectomy; my left leg's growth was stunted, and I'm now at a difference of about 3 inches, for which I wear a lift (I may eventually undergo leg lengthening surgery to even 'em out, but I'd need a couple other surgeries first to make my leg strong enough to withstand the lengthening--and as an adult working a 40-hour job, that kind of free time/leave isn't anywhere near as available to me as it was when I was a student or working part-time). I remember feeling very lucky to have been born in a time when (and metro area where) alternatives to amputation were possible, if rare.

Interestingly, what I've found searching "fibular hemimelia" in the last year or so is that amputation is once again the most common (even most desirable) treatment--and that apparently "children who undergo early amputation are more active, have less pain, are more satisfied, have fewer complications, undergo fewer procedures, and incur less cost than those who undergo lengthening." ("Fibular Hemimelia: Comparison of Outcome Measurements After Amputation and Lengthening" in The Journal of Bone and Joint Surgery 82:1732 [2000])

I've grown up thinking of amputation--in regards to fibular hemimelia--as a primitive solution that modern medicine made it possible for me to avoid. The surprise? All the below folks were born with fibular hemimelia, are significantly younger than I am, and opted for amputation. You may have heard of the first one or two.

"Amputee Ineligible for Olympic Events" from the New York Times
"Pistorius, 21, was born without fibulas and had both legs amputated below the knee when he was 11 months old. But in the four years since he started competing, he has set Paralympic world records in the 100, 200 and 400 meters and it was his dream to compete in the Olympic Games."
UPDATE: This was just overruled--Pistorius might compete.

Wikipedia article on Aimee Mullins, model/actress/athlete born in 1976 with fibular hemimelia in both legs, both of which were amputated. "She has been named one of the fifty most beautiful people in the world by People." Mullins at MyHero: "Without her legs, she could still learn to walk with artificial ones. With her legs, she would have been confined to a wheelchair for the rest of her life."

Team Ossur Member Jeff Skiba--The First Amputee in History to Clear Seven Feet in the Men's High Jump
"Born without a fibula in his left leg due to a congenital defect known as fibular hemimelia, doctors amputated [the 24-yr-old's] leg below the knee when he was less than a year old."

Oak Park Hockey Player Isn't Held Back by his Prosthetic Leg
"Now a junior at Oak Park, Brown scored seven goals in 19 games this season. That's no small accomplishment for any player, particularly Brown, who was born in 1990 with fibular hemimelia in his right leg...Tonya Brown, Jake's mother, says the family consulted with doctors all over Kansas City, but few had even heard of fibular hemimelia. The early prognosis was that Jake would never walk...The Browns finally found comfort at Shriners Hospital in St. Louis when they met a family from Indiana with a daughter Jake's age who also had the condition. Additionally, the Shriners doctors were familiar with the condition...Unfortunately, the best course of action was amputation."

Racing to the Paralympic Games
"Tyler Carter of Topton is a typical 14-year-old...And oh, by the way, Tyler has only one foot. Tyler was born with fibular hemimelia, a congenital condition that left him without a fibula bone in his right leg. As a result, the leg was amputated below the knee when he was 1, leaving him with what he jokingly refers to as 'my stump.' Despite his disability, Tyler is a competitive skier who often beats able-bodied competitors in races held throughout the Poconos..."

I'm Pro-Coat and I Vote

"Museum Kills Live Exhibit" in the NYT:

One of the strangest exhibits at the opening of Design and the Elastic Mind, the very strange show at the Museum of Modern Art in New York that explores the territory where design meets science, was a teeny coat made out of living mouse stem cells. The “victimless leather” was kept alive in an incubator with nutrients, unsettlingly alive. Until recently, that is.

Paola Antonelli, a senior curator at the museum, had to kill the coat. “It was growing too much,” she said in an interview from a conference in Belgrade. The cells were multiplying so fast that the incubator was beginning to clog. Also, a sleeve was falling off....

Animation Backgrounds

is a blog that posts exactly that: backgrounds from animated movies. Many would make excellent desktop wallpaper (I'm going with Poppins, first image below).













Animation Backgrounds

When Obama wins, no one will need Viagra...

("When Obama wins..." at kottke.org)

Tween masters quietude?

You know how those child painting prodigies always show up on Oprah?

Choriamb posts Ted Kooser's latest "American Life in Poetry" selection, by "Max Mendelsohn, age 12, of Weston, Massachusetts":

Ode to Marbles

I love the sound of marbles
scattered on the worn wooden floor,
like children running away in a game of hide-and-seek.
I love the sight of white marbles,
blue marbles,
green marbles, black,
new marbles, old marbles,
iridescent marbles,
with glass-ribboned swirls,
dancing round and round.
I love the feel of marbles,
cool, smooth,
rolling freely in my palm,
like smooth-sided stars
that light up the worn world.

I mean, wow. This poem is so...neat. Studied/skilled. Poetry-ready. And while it sounds kind of like it was written by an old, shambling man, it a) apparently wasn't and b) has some good rhythmic line breaks (blue marbles,/green marbles, black/) ("dancing round and round" is the only childlike-sounding line in the whole poem). I Googled Max Mendelsohn poet and found the same poem in a 2004 issue of the children's magazine Stone Soup, along with a picture of Max (identified as being 12 then, so Kooser might have said, "written when Mendelsohn was 12"). No other poems. Poor Max. Perhaps the world, already worn when he was 12, turned him off from writing more?

It's not things like Wonder Sauna Hot Pants that are the truly strange finds on the internet, but stuff like this.

"I'm not talkin' bout movin' in..."

Went to Bella's gymnastics meet last night, an event made positively surreal by what must have been a "Soft Sounds of the Seventies" compilation CD. Imagine 50 8-to-12-yr old girls on the parallel bars or vaulting to "I'd Like To Make It With You," "I'd Really Love to See You Tonight," "Dreamweaver," and "Summer Breeze." (The kids weren't performing floor exercises at this meet, and I guess someone decided that other background music was needed. But had they never heard of "Eye of the Tiger"?)

Why, why does this appeal to me?

Falindrome: The World's Largest (Only) Source of Fake Palindromes!

includes entries like:

Ray, eat a ripe pirate tea. YAR!!

and

No sass on a livid Advil — Vidal Sassoon

Clay Shirky: "Gin, Television, and Social Surplus"

Two excerpts. Read full transcript here. Video of talk here.

One:

A couple of weeks ago one of my students at ITP forwarded me a project started by a professor in Brazil, in Fortaleza, named Vasco Furtado. It's a Wiki Map for crime in Brazil. If there's an assault, if there's a burglary, if there's a mugging, a robbery, a rape, a murder, you can go and put a push-pin on a Google Map, and you can characterize the assault, and you start to see a map of where these crimes are occurring.

Now, this already exists as tacit information. Anybody who knows a town has some sense of, "Don't go there. That street corner is dangerous. Don't go in this neighborhood. Be careful there after dark." But it's something society knows without society really knowing it, which is to say there's no public source where you can take advantage of it. And the cops, if they have that information, they're certainly not sharing. In fact, one of the things Furtado says in starting the Wiki crime map was, "This information may or may not exist some place in society, but it's actually easier for me to try to rebuild it from scratch than to try and get it from the authorities who might have it now."

Maybe this will succeed or maybe it will fail. The normal case of social software is still failure; most of these experiments don't pan out. But the ones that do are quite incredible, and I hope that this one succeeds, obviously. But even if it doesn't, it's illustrated the point already, which is that someone working alone, with really cheap tools, has a reasonable hope of carving out enough of the cognitive surplus, enough of the desire to participate, enough of the collective goodwill of the citizens, to create a resource you couldn't have imagined existing even five years ago.

[bold mine]

Two:

In this same conversation with the TV producer I was talking about World of Warcraft guilds, and as I was talking, I could sort of see what she was thinking: "Losers. Grown men sitting in their basement pretending to be elves."

At least they're doing something.

Did you ever see that episode of Gilligan's Island where they almost get off the island and then Gilligan messes up and then they don't? I saw that one. I saw that one a lot when I was growing up. And every half-hour that I watched that was a half an hour I wasn't posting at my blog or editing Wikipedia or contributing to a mailing list. Now I had an ironclad excuse for not doing those things, which is none of those things existed then. I was forced into the channel of media the way it was because it was the only option. Now it's not, and that's the big surprise. However lousy it is to sit in your basement and pretend to be an elf, I can tell you from personal experience it's worse to sit in your basement and try to figure if Ginger or Mary Ann is cuter.

And I'm willing to raise that to a general principle. It's better to do something than to do nothing. Even lolcats, even cute pictures of kittens made even cuter with the addition of cute captions, hold out an invitation to participation. When you see a lolcat, one of the things it says to the viewer is, "If you have some sans-serif fonts on your computer, you can play this game, too." And that's message--I can do that, too--is a big change.

This is something that people in the media world don't understand. Media in the 20th century was run as a single race--consumption. How much can we produce? How much can you consume? Can we produce more and you'll consume more? And the answer to that question has generally been yes. But media is actually a triathlon, it's three different events. People like to consume, but they also like to produce, and they like to share.

Muxtape

At Muxtape, you can upload 12 mp3s and make yourself (and everyone else) a little mixtape to listen to online. Lots of folks are using it to discover new music--click on a mix that looks interesting, and go.

I just finished my first mix, some favorite mashups you can listen to here. Kasey Mohammad has posted one here, Anne Boyer here. Other po-bloggers, let me know if you make one; I'll add it to this post.

I love the word muxtape. Lately just making chains of vowel substitutions (instead of "writing") really appeals to me: batter lattle pall, butter luttle pull, botter lottle poll, better lettle pell. "Maxtape," "mextape," "moxtape" wouldn't have had anywhere near the punch of muxtape, which gives me a little thrill in the gut.

Perfect size 4s

Julia points out that the Sweet Valley High books are being rereleased, "with updates to reflect the tastes of 21st-century teens." In the new version, Jessica and Elizabeth Wakefield are both a "perfect size 4" instead of the "perfect size 6" they were in my teenhood.

This comes on the heels of my realizing a few months back that much of the new spring line for kids is actually designed with "pretty plus" figures in mind (Shh--the kids wearing 'em, including ours, don't know this). The two shirts below are current Old Navy offerings from the regular, not the plus size, collection. As Teresa puts it, "Muu muus for kids!"



Sigh. Pop quiz: what's the only physical difference between Elizabeth and Jessica Wakefield?