"Blind Masseurs Jump From Bridge"

"Blind Masseurs Jump From Bridge"

Get your grubby hands off it, I'm gonna be the first to use this story in a poem.

reality check

20 Questions: Social Justice Quiz

Fibular Hemimelia: Resources for Support

I've noticed that lots of folks are landing at this blog via searches on "fibular hemimelia," entering through a May 08 post I wrote on fibular hemimelia, amputation, and Oscar Pistorius. I thought it might be worthwhile to post some FH-related links on the assumption that those searchers are looking for more than my post offered. I've reviewed these sites, but do not personally frequent them. Like "We're Here, We're Queer, Get Used To It," I'm here, with fibular hemimelia, and used to it. But those landing here may be new to FH and searching for more experience-related info than the FH entry in Wheeless' Textbook of Orthopaedics provides, so here are some friendlier options.

I'll say this, quickly: I have not undergone leg lengthening or amputation as of today, though I had around 20 surgeries for my FH between 1974 (my birth year) and 1998. If your kid has FH and is young and you're wondering if you should undergo leg lengthening, my feeling is go for it. Really, it's not that bad, medieval as that external fixator (and thanks to Ilizarov, an ex-fix might not be necessary) may have looked on Ethan Hawke in Gattaca. I've seen a lot of kids with successful lengthenings in my surgeons' waiting rooms. I was on track to undergo lengthening when I was around 23, but once you're a grown-up with a 40-hour job you need to drive to and a family to help support, it's damn near impossible. Go for it while your kids are young. I wouldn't hesitate if it were my kid (and yes, I have some). I feel confident in recommending the International Center for Limb Lengthening in Baltimore, and especially doctor Dror Paley. I was their patient before they were a "Center"--were simply a wing of Kernan Hospital. I don't have enough close experience to have much of an opinion on amputation, but my May post detailed the ways in which many are now thinking it's a better course (in terms of patient pain and long-term satisfaction) than lengthening.

On to the links. I'll look for and post more as I have time to.

Fibular Hemimelia Support/Discussion Group at Yahoo
This group appears to be fairly active and up-to-date as of 09/04/08.

The description says, "This group is for parents [of kids] and kids who were born with fibular hemimelia. My wish is for this board to provide support, encouragement and hope for those seeking it. Membership requires approval for the safety of our members as well as a prevention to keep spammers away. Photos are allowed and encouraged. Please check out the LINKS section for more info and resources on FH."

"Fibular Hemimelia: Diagnosis, Treatment, and Support"
--article at Pregnancy Today

Help Jessica Walk
--a personal page (donation-seeking, but free to read, of course) by a girl born with fibular hemimelia in 1986 who is finally seeking funds for amputation at age 20 as she begins to feel that the pain/braces/surgeries she's gone through aren't cutting it for her. Her case looks similar to mine and it scares me to read of her pain worsening and some of her mother's comments ("Jessi's condition worsened. Every time she took a step the pain was excruciating. The bones in her ankle were beginning to deteriorate and crumble. Her suffering was such that she begged for her legs to be removed") (Crumble? Shit!), as I've noticed recently that my pain is worsening & function lessening, too: I'm tripping and falling a lot, and my leg aches pretty regularly. Doesn't appear that Jessica ever attempted leg-lengthening. I'm not prepared or expecting (who is?) to deteriorate that badly, but if I do, I can't say I'm jazzed about the thought of amputating at my age (34). I might prefer a wheelchair if that was an option.

Limb Differences
--described as an "online resource for families and friends of children with limb differences," this is a broader site that includes fibular hemimelia and has a Connections/Message Board, fairly active as of 09/04/08.

Hemimelia Support Group (London, UK)

Hope these help.

September 4, 1957

Soul Make a Path Through Shouting
for Elizabeth Eckford
Little Rock, Arkansas, 1957

--Cyrus Cassells

Thick at the schoolgate are the ones
Rage has twisted
Into minotaurs, harpies
Relentlessly swift;
So you must walk past the pincers,
The swaying horns,
Sister, sister,
Straight through the gusts
Of fear and fury,
Straight through:
Where are you going?

I'm just going to school.

Here we go to meet
The hydra-headed day,
Here we go to meet
The maelstrom--

Can my voice be an angel-on-the-spot,
An amen corner?
Can my voice take you there,
Gallant girl with a notebook,
Up, up from the shadows of gallows trees
To the other shore:
A globe bathed in light,
A chalkboard blooming with equations--

I have never seen the likes of you,
Pioneer in dark glasses:
You won't show the mob your eyes,
But I know your gaze,
Steady-on-the-North-Star, burning--

With their jerry-rigged faith,
Their spear of the American flag,
How could they dare to believe
You're someone sacred?:
Nigger, burr-headed girl,
Where are you going?

I'm just going to school.

Del Martin, 1921-2008

Lesbian rights activist Del Martin, who co-founded the Daughters of Bilitis with Phyllis Lyon and finally got to marry Phyllis (after 55 years together) this past June in San Francisco, passed away this morning. She was 87.

Associated Press article

"The Girl's Will; or Optimism" by Judith Hall

I like this poem, posted a week or so ago on the Best American Poetry blog. A cento, I assume? Been meaning to re-post it here. After Hillary's speech feels like a good time to do it.


The Girl's Will; or Optimism

After Alice, Lolita, Candy, Candide, and Alice Again

"Curiouser and curiouser!" cried —
Half-naked, kneeling, turning about on
"Darn Daddy anyway!" she said
Once upon a time.
Something interesting is sure to

Grow large again, for really
The sex interests of children
The heavy breathing of the
Best. For I am infinitely
Growing and growing, and very soon

With a yelp of delight
Stirring in a little girl
Her terrible selfishness, how it
Was an indispensable part of
Thinking I should be free.

"Please mind what you're doing!"
"This is a free country."
The girl was quite excited,
The best of all possible
Riddles that have no answers.

--Judith Hall


More Hall:
"The God that Took the Place of Pleasure" in The Boston Review
"White Bottom Blues" (BAP blog again)
"Poem for the Wheat Penny (1909-1958)"
Three Poems in Inertia Magazine

Joshua Callaghan's graph sculptures

These strike me as better-than-gimmicky--Joshua Callaghan's smart, simple graph sculptures. Could make a great grade/high school assignment, too--students each contribute a sculpture graph--let's say they're doing a unit on a certain war, or Native American history, or labor, or something--and create a sculpture garden-like exhibit for parents to walk through on back-to-school night (or to keep as an installation in the school). Via Waxy.



Military Spending by Nation, painted wood



Consumer Confidence, 2006-07, brass, wood



Very Concerned, Somewhat concerned, Not at All Concerned
wood, paint, 4"x12"x50"

Nele Azevedo ice installation

Ooh, these are great. Via Neatorama, photos of an installation by Brazilian artist Nele Azevedo from October 2006. The piece uninstalls itself, when the last ice guy melts--reminiscent of Laurie Anderson's Duets on Ice.

Breaking Dawn Blood Drives

Via Publisher's Weekly, this is pretty great: some of the book stores holding midnight release parties for Breaking Dawn, the conclusion to Stephenie Meyer's wildly popular teen vampire series, are combining them with late-night blood drives. Powell's is offering blood donors preferential treatment in the book line.

Songza

Songza is a site where you can, for free, look up and listen to entire songs when the mood strikes you. They have some neat tools, one of which allows you to send a song to a friend, one to embed a song on your site, one to link to a song, one to post a song to Twitter, etc. Good if you're looking to listen to, but not purchase, a song--or to listen to the whole thing and not just a sample before purchasing. I haven't delved into their collection too deeply, but I was able to find Madder Rose's "Swim", which is not available on iTunes--and unable to find the B-52s' "Dry County," which I had stuck in my mind today on my commute. A quick search on the song I most obsess over, Laura Branigan's "Gloria," also yielded live performances of "Don't Cry For Me, Argentina" and "Me & Bobby McGee" by Branigan.

Links to some of my favorite songs of the last year (in pop, at least):
"This Heart is a Stone" by Acid House Kings
"1969" by Montt Mardie
"Toxic" cover by Mark Ronson feat. Old Dirty Bastard
"Blue Motorbike" by Moto Boy

And an oldie to shake your coffee to this morning:
"Bust A Move" by Young MC

Clerihews at the Boston Globe

Rats--found out too late that The Boston Globe is running a clerihew contest (finalists to be chosen tonight, 7/7, then voted on until July 10). Submissions are in the comments and are fun to read through. Some of my favorite entries (I'm disqualifying ones in which the first line consists of anything more than the subject’s name—it’s not a strict rule of the form, I guess, but I’m a hardass like that):

By “A. Nan”:

Jorie Graham
once said, "I am,
I think. Or not.
At least I'm hot!"

Frank Bidart
bent over Art,
called the friction
stuff of fiction.


By “therblig”:

Tim Berners-Lee
Invented HTTP
Thus the world wide web was born
For Nigerian Diplomats and porn

Georg Simon Ohm
Studied physics in his Bavarian home
But after much resistance, he just couldn't fight it
And wrote "Die galvanische Kette, mathematisch bearbeitet "


By “Danielle”:

Joe Orton
Was never too shy to go courtin'.
He spent some time in the slammer
Then got bludgeoned with a hammer.


[Think I'd vote for the Jorie--or Georg Simon Ohm]

Here are the only clerihews I’ve ever written, for a great class with Peter Klappert in '97:

Elizabeth Bishop
buttered the fish up
with homage and versification--
and herbed garlic, post-publication.

Marianne Moore
kept a voluminous store
of quotes that she dug in
case she needed something to plug in.

Museum Staff Cleaning Elephant Skin, 1933

--photo by Thane Bierwert, from an incredibly cool new online exhibit by the American Museum of Natural History: images of exhibition preparations from the 1930s.

Book House in Dinkytown

The June issue of Bookslut features an interview with Kristen Eide-Tollefson, owner of The Book House in Dinkytown--one of the best (maybe the best) used bookstores for poetry & poetics in Minneapolis. Whenever I bring books in for trade, she says "I love your books! I love your books!" It's also a great rainy-day date place (especially if you start a few doors down at Al's Breakfast).

"Gorilla Killings" by Brent Stirton

Amazing photos taken in July '07, when locals and rangers worked together to evacuate the bodies of four Mountain Gorillas in the Virunga National Park, Eastern Congo. One of the gorillas had been shot; all were killed under mysterious circumstances. See more of Stirton's "Gorilla Killings" series here. Via we make money not art.

Inner City Snail

from "Inner City Snail: a Slow-Moving Street Art Project" by Slinkachu

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 one from Mary Poppins, below).



Animation Backgrounds

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.