A little on my independence for Independence Day

I promised that at some point I would rave in more detail about my fabulous new prosthetic leg, and today's the day.  It's July 4, and another name for that in this country is "Independence Day."  As esteemed correspondent and honorary niece Dr. Elizabeth "F." McClung has already pointed out to me in an e-mail today, it's called that because we are supposed to be celebrating our independence from British influence.  However, since tons of my friends are British, I absolutely love toffee, Victorian writers, and the Beeb, and since I am myself writing this post in a form of the English language which my loved ones kindly call "Sara-ese" (and more unkindly call "verbose"), I sort of think that ship has sailed.

So I've got other plans.  I shall talk a little about independence itself.  But what better occasion to go on and on about the thing that makes it possible for me to perambulate "independently"?

Of course, I am not really independent.  I did not make this leg, design it, or pay for it, and I live with my true love off his salary, not, alas, earnings from my art, writing, jewelry, or tote bag and T-shirt sales.  (Yet.)  Endolite and Össur made the components of my leg based on the designs and experience of many, many people, only some of whom are employed by each company, only some of whom are even still alive.  A month and a half after my brain surgery, my true love and my excellent prosthetist Bob decided while I pretty much looked at the floor and hummed to myself what should go into the new leg after I had explained what I wanted to keep being able to do in my everyday life, and then excellent prosthetist Bob cast and then hand manufactured the suction socket and support frame, even laminating into the frame a bit of embroidery I'd prepared.  Then he put the whole apparatus together, and then painstakingly tweaked it, minute adjustment after minute adjustment, until the alignment was correct and I could really walk in it.  Finally, the good taxpayers of the Commonwealth of Massachusetts paid for the whole thing, all $22K+ of it.  (Thank you, one and all.  All this and brain surgery, too?  Really, I feel so spoiled.  Yet please pardon me while I don't say, "Oh, you shouldn't have.")

Every life is a collaborative effort.  Every one.  In this country, we tout independence on a nigh mythic scale and tend to scorn people who obviously are not independent, but the truth of the matter is that no one is entirely independent.  Did you grow, cook and package those potato chips you're shoveling into your mouth?  Did you raise, slaughter, skin, butcher, and cure the different parts of the animal that gave its life for your shoes?  Okay, you paid for them.  Are you self-employed?  Did you invent and manufacture the vehicle that gets you to work or the machines you use to perform your job? Did you build the building in which you work, grading the land and then hand-hewing, milling and mixing all the different ingredients that went into it all by yourself, or pave the road you travel to and from?

Perhaps I've made my point, or one of them, anyway.  Independence doesn't exist in modern, civilized culture, nor do most of us really want it to even though we might spin a lot of rhetoric in its direction when we particularly wish to manipulate each other, or the part of each other that longs to see the world in simple terms, black and white, good and bad, worthy and unworthy, respectably self-sufficient and everyone who doesn't make the cut above slackerdom, leechdom.  As if there were ever only two categories of anything, let alone anyone.

I'm reading a book right now -- against my better instincts, perhaps, considering the subject matter (learning how to be a surgeon in a Boston-area teaching hospital) -- called Complications, by Atul Gawande.  At one point he talks about medical ethics and things that have been written about the role of the physician in terms of the patient's decision making rights and process versus what he himself has come to believe after six years as a surgical resident and more as a father of children who have sometimes needed quite serious medical attention, with very hard decisions attached.  He makes the point that a lot of people, given a tough enough prospect, don't want to make their own medical choices in the end, or choices for people they love who are unable to choose for themselves, and that it is just as appropriate for anyone to honestly feel that way as not, but that it is also correct that the right of all people to provide input into their own care at the very least should be respected, even the right to abdicate in situations that they have come to feel are beyond them.  He makes the point that each situation is different for each person, but that sometimes things are really so big and bad that most people in those situations find themselves unable to make major decisions at all and want, even need other people to make choices for them.  However, he also makes the point that an individual's autonomy must always be respected.

Autonomy, self-governance, is not the same as independence.  It's the thing we grope for as we come of age, delicious, respect-worthy, and a constantly maturing facet of each of us that it is certainly appropriate for all of us to nurture and protect within ourselves and each other to whatever extent possible.

My new leg which I did not earn but which other people bought me anyway does not miraculously turn me into an independent entity any more than the last one did.  It does, however, support my autonomy and my every groping toward greater autonomy just like the last one did, but even better.

This and others preceding it are pictures of my previous leg, which I named "Susie Dress-Me, Walk-Me."

She was beautiful, and my constant companion for four and a half years, but over those years, as often happens in this kind of relationship, we grew apart -- about twenty pounds apart. So I had to send her away.

"I can't use her anymore," I explained to Bob, as I handed her off to him for the last time.  "It's painful to walk in her."

"It's painful just to watch you walk in her," he agreed.  I asked him to recycle whatever could be recycled by donating reusable components to a charity that provides prosthetics to people who do not have the means to afford them.  He said he was going to put her on display.  (I imagine he was joking, though by the time I got done with her, she kind of was a work of art, some sort of art, albeit ultimately unfinished.)

I was standing on two feet when he took Susie away.  This is because I had finally been fit with my glorious new leg, which I have named "Action Barbie."

("If you're going to call her that, then you are seriously going to have to get some LEDs," my true love told me this morning.  "That way she can dance to her theme song."  And then he began singing a musical number of his own composition, a cross between blaxploitation and late 1970s TV theme music which I cannot duplicate with words.)

Here is Action Barbie in a pose of, well, inaction:

Pretty damn stylin', right?  Woo-hoo!  And I honestly don't know whether it's because of the colorful presentation, the fact that people around here are getting used to me and my sharp tongue, or the drastically improved alignment Bob so painstakingly achieved, but when I wear this puppy in public, even in shorts or a miniskirt, almost nobody treats me like a poor, brave, crippled girl who is just so damn inspiring to others anymore.  Huge relief.  Now I can just get on with my shopping.  Or whatever.

Let's look at each element!  First, my spectacular new foot by Össur, about which I have already blogged at some length, and whose color is the inspiration for the entire appartus' name, Action Barbie:

You see that white sock? Yes, I wear a short white sock inside my foot now.  And when I first saw it, I snorted in disbelief.  "Does it really have to be white?  Way I live, that's going to be absolutely filthy the first week," I assured Bob.

"We can seal it under plastic," Bob assured me in turn.  He also told me, though, that it is knit of thread spun from a Kevlar-like substance and very resistant to outside influence.  And you know what?  It's practically the same color it was when I walked out of his office with it, even though, as you can see from the filth accumulated on Barbie's pink plastic while I've worn sandals almost every day for the last two months, it has in fact been exposed to quite a bit of dirt.  Amazing.

Moving up, isn't this a nicely turned ankle?  Oh, the artistic possibilities.  I envision something with wire, and maybe beads.

This assembly is also made by Össur, I believe, and I am still not quite sure what all that does or what adjustments are possible with all those notches upward.  However, the flexible, springy metal "heel" of the skeleton of my foot fits into my shin at this point, and then that fits into the blue ball above, and that serves as shock absorber and also side-to-side rotor so that I don't torque the top of my thigh every time I twist my body suddenly without lifting my foot.  There's also a tiny socket and hose that feed into this ball (and for which I was given a special pump in a nice blue and white cardboard box) so I can adjust the pressure at will.  I haven't changed anything, because I like it fine the way it is.  I believe putting more air in will make it more or less responsive, but I won't know 'til the day I experiment with it.  (Oh, sure, I guess I could read the manual, but I might not understand it until I can actually feel it.  That's just how I roll.)

Next is the top part of the shin, made by Endolite.  As you can see, I've already gone over the whole thing with silvery stickers.

Endolite made most of Susie, and she did very well for me for years, as you know. In fact, when I first approached Bob for a new leg, I told him I wanted something exactly like what I had, but that was before I found out all the new things that were now available.  I'm glad not to be turning my back on Endolite, though, while at the same time I am very happy to have some Össur parts.

Once upon a time, when I was scared out of my mind and doing research to find out if I could even bear to have an amputation to save my life for a little while, Össur was the second search result I got for my AltaVista query on amputation, the first being an Atlantic Monthly article from several years ago going on in depth about apotemnophiliacs and acrotomophiliacs, which I hadn't even known existed and which frankly freaked me out even more than I already was, exhausted and beginning to actively die of cancer as I was.  (As my true love said, "Oh, great, are you going to have to start carrying mace now?  And am I going to have to beat people up?")  After that assault to my already traumatized nerves, how fantastic it was to visit the Össur site next and see right there on the front page (that month; they change all the time) a picture of a young woman doing exactly the sort of thing I wanted, needed to be able to keep doing:  standing on top of a mountain she'd just climbed, only wearing a prosthetic leg. She was a trans-tibial amputee, but still.  I realized at that point that the doctors were not lying to me, that I really was going to be able to have the life I wanted after amputation, and so after that I was able to continue my research, and then go ahead with arranging the surgery.  Though I wrote to thank them and have told several people this story, I'm not ashamed to say it again:  In a way, Össur saved my life that day.  They sure did help.  They were on my team from the beginning, even though it turned out that none of their products were selected for my first prosthetic limb.  Now I'm one of their customers, though, and now, if you weren't one of the people I'd already made listen to this tale, you know why I'm so happy to be.  But Endolite has done well for me, too, so it's really nicest of all to be able to have products from both!

Of course, this all represents something much bigger than me and my feelings, and yet I almost forgot to point it out.  (In fact, I've come back three days later to throw this in, because it's a really big deal.)  Five years ago, I was told that I couldn't have some parts by Endolite and some parts by Össur, because even though prosthetics were modular, they were not modular from manufacturer to manufacturer.  There were no standard fitting sizes.  For example -- and I'm totally making up these numbers, because I don't know what the real ones are -- the part where my blue ball (the likes of which didn't exist at all five years ago) fits into my black calf might be comprised of parts that are, say, 5cm thick.  But five years ago, maybe the "male" part of this connection would have been 4.52cm thick, while the "female" might have been 4.68 thick, or vice versa, so they wouldn't have gone together at all.  Now there are standard sizes for these things, so more choices for amputees, and that is a magnificent improvement in the industry.  Not all parts made by all companies adhere to these standards still, but the fact that there are any and that so many do is fantastic.  And this is how it has come to pass that I can not only patronize two companies I like, but I can also end up with the very best assortment of components to help me accomplish my particular life, regardless of who manufactured them.

One of the biggest improvements in my new calf-and-knee assembly is the kneecap.  Far above, in the pictures of Susie, you can see my old knee which was covered with a hard, shiny plastic patella.  I could flick the patella open and shut.  I'm not sure why this was a feature of any particular value; a lot of dirt accumulated in there over the years.  On top of that, the hard and shiny aspects made it very difficult for me to kneel.  My leg would slide around on all but the harshest surfaces, such as asphalt, even when I wore pants; in pants, the shiny knee would just slide all over the inside fabric.  I was proud of my scuff marks, just the same way I'm proud of the wrinkles on my face, because I've earned them, every one, earned them living a full life and openly feeling it every step of the way.  I didn't actually feel these scuff marks while they were happening, of course.  Still, I think you can appreciate where I'm coming from.  But having a soft rubber covering which can be easily replaced, snapped on and off, allows me to have traction and even a little bit of cushioning when I'm on my knees.

This part of the leg also houses the hydraulics by CaTech.  This mechanism is exactly like the one in Susie, and it is what I use instead of calf muscles to flex and unflex the knee.  Tension on this, or rather resistance, can be adjusted via that little wheel.  (I like it tight; makes me feel safe.)  Also, there's a little metal loop you can see between the blue prongs, and the position of that (pointing down as shown, horizontal, or or pointing up)  determines whether the knee bends normally, swings freely, or locks rigid.

The other noteworthy aspect of this part of the assembly is the part where the lower limb connects with the suction socket that holds it on my thigh stump.  (More on that socket in a minute.)  You can't tell by looking at it, but this technology has also improved in the last five years.  Remember how I mentioned Bob's painstaking alignment work, and also how I mentioned that I had had to have three separate sockets cast last time?  Just casting the one socket this time was quite sufficient because the type of connector attaching it to my new knee is adjustable in place.  I think the previous one was a little bit adjustable -- and we are talking about adjusting the vertical alignment of the lower limb assembly -- but this one is very adjustable.  Each of my previous sockets cost $6,000 to cast, and that was the reduced price set by the crappy private insurance I had at the time through my job at Whole Foods.  So not only has this technical improvement meant far less hassle and time spent for everyone involved, but also a significant conservation of funds.

Now it's time to show you my favorite, favorite part, the flashy orange suction socket!

This is also exactly the same kind of socket I had before. Aside from a wildly improved fit, the best fit I've ever had, the differences are bi-fold: First, unlike what dear Bob's former boss insisted on giving me with Susie, this one is actually centered over the mechanical leg assembly, resulting in FAR better alignment and a much more natural stance and gait, a stance almost identical to the stance I had with two healthy, organic legs, and a gait so much narrower and more efficient that, among other things, I can walk comfortably alongside people walking on my right for the first time in five years because I don't have to worry about accidentally clocking them on the swing, maybe hurting them, maybe tripping on them and falling myself, forcing me to deliberately inhibit my every step to accommodate that fear.

Here's the back.

On days when I expect to sweat a lot, you might be able to see panty liners plastered all over the inside of the socket through that translucent polycarbonate sleeve back. However, not covering it with more of the carbon fiber frame makes it more comfortable to sit in, more flexible and less slippery, and also reduces the heat retention of the whole structure.  The strap across, of course, stabilizes the shape under the force of my weight.

The other way things are different should be obvious: aesthetics.  For my first leg, and for the three sockets which were manufactured for it until I got one that fit, I embroidered the words "carpe diem" in lettering and with a flower graphic derived from a freeware font I invented a few years back called "Summertime."  These pieces of embroidery were laminated over each of my first three carbon fiber socket frames.

The version you have seen was embroidered in white cotton thread on a piece of blue canvas folded double.  The first version, however, was done on a single layer of bronze satin.  That one, frankly, came out looking like sh*t.

I remembered it looking like sh*t because the heat destroyed the color of the fabric.  It wasn't silk satin, just cheap synthetic which melted onto the black carbon fiber most unattractively.  (Well, actually, I didn't think that part was THAT bad; I thought it looked like ancient armor.)  What I had forgotten was that the second and third incarnations of this particular art project were made on fabric folded double, and why.

Bob assured me that he had now figured out how to help the colors stay true, no matter what fabric was used, by backing it with white fabric.  He forgot to tell me to double up, too, though, and why.

I went to JoAnn's Fabrics one day with every intention of buying more heavy blue canvas.  I hadn't decided if I wanted to stick with the "carpe diem" theme (leaning toward probably not, though), but I thought I would at least stick with what had been working so well for so long, materials wise.

Then I saw this stuff. (Click to enlarge.)

We were coming up on prom season, you see, and there were whole displays of glorious satin fabric.  You know I couldn't resist this one, not with all those rhinestones and sparkly things embedded right in.  And no, I did not resist.  I did buy some serviceable blue canvas, and also, just to have choices, some luxuriously shiny but plain lilac-colored satin -- plain as in not studded with flashing bits of clear glass.  And I decided that the appropriate course of action would be to embroider in cobalt cotton thread, using letters derived from a font called Edwardian Script MT, the words "ars gratia artis" (art for art's sake), which describe at least as much about me and my life as the words "carpe diem," and which also sort of signal a slightly different focus for me for my immediate future.  Besides, what really is more appropriate for a gratuitously embellished piece of mostly hidden fabric the likes of which Bob routinely laminates in wide variety into all sorts of customers' sockets free of charge because, as he says, it offers another opportunity for customization?  A transfemoral amputee himself, he understands quite well how important this kind of personal touch can be when you are having to wear store-bought body parts.

The thing is, I only embroidered through one layer of fabric.  As a result, when the synthetic fibers melted, even onto white fabric backing, they became translucent.  So now you can see the backwork of my embroidery, the places where I went from word to word, tied off ends, etc.  And neither of us foresaw that the end product would be quite this orange.

I love orange, and I am told it is the Vedic color of life itself.  I'm just not sure how well it goes with my summer wardrobe.

Bob offered to redo it, free of charge, but you know what?  Not only do I not need to spend any more time on this project at this time, let alone take any part of anyone else's precious, irreplaceable life just for some obsessive pursuit of visual "perfection" in handcrafts, but the look has actually grown on me.  It's a grunge/glam/raggedy-edged but still somehow elegant expression of my true experience, an imperfect experience to be sure, but one that flows, and connects, and so what if other people can see the work that goes into it all, because look how it sparkles.

Tomorrow Action Barbie and I are going shopping in New Hampshire with my friend D, so I have to sign off now.  I'm sure there's more to say about this wonderful new thing the people of Massachusetts have given me, but I haven't learned it yet.  I'll let you know when I do.

Meanwhile, happy Independence Day.  And thanks for your part in not making me live entirely independently, whatever part that might be.

Comments

[wheelchairdancer]

that's some leg! Wow.

WCD

[The Goldfish]

This was a super post. What a super leg!

I've always thought independence from others to be a dubious aspiration. As for independence from British influence, well that was a big mistake. ;-)

[Sara]

Thank you, ladies! Of course, I do think it funny that the only people who have yet commented on this post (which I keep having to edit; so many typos! so many details to add!) are Brits. :)

I would also like to point out that Endolite's headquarters are located in Basingstoke, Hampshire, ENGLAND. Y'all can keep your ridiculous royal family, but damn if I would ever consider giving up humbugs, Booker Prize winning literature, or awesome fake body parts over some nearly 250-year-old political squabble -- or any modern one that may arise, for that matter. And you ladies have each already influenced me strongly, and I do hope you will keep it up.

Actually I'm sort of surprised no one has come in some flaming ostensibly patriotic snit to correct me on the meaning of the 4th of July, especially since I live in a town which, along with two or three others bordering it, claims to be "The Birthplace of the American Revolution." But then, only six or seven people read this blog.

[Sugared Harpy]

Oh, I ADORE the lettering with the strands and strings of your embroidery. Absolutely gorgeous, different, and super sexy!

[Sara]

You made Action Barbie blush! Oh no, wait, she's always that color. ;)

I also think it looks sort of organic, like it's growing on a trellis but not completely controlled.

[laurie]

Informative, entertaining and little bit of demagoguery and a tiny bit pedantic (autonomy versus independence). A woman after my own heart. ;-)

[laurie]

I clearly need to proofread my comments before posting. I meant to delete demagogue and only write pedantic. I always get those two words confused for no good reason. Sorry.

[Sara]

Aw, shoot, Laurie; I was so hoping to have achieved demagoguery on the 4th of July. I wouldn't have been the first! ;)

But I am all about the pedantry, it's true. Or was it just semantics? I love me some words!

That whole discussion was mostly me just thinking aloud about what I'd been reading in this book, Complications. I don't have it in front of me, so I'm going to quote it inaccurately (and might come back to edit this later), but Gawande cited one study as part of his discussion of respect for patient autonomy vs. forcing the patient to make all his or her own choices vs. the old choice of letting the patient make none of his or her own choices and not even giving the patient all the information relevant to his or her case, and this study determined that while 60%+ of people asked said they would rather make all their own medical choices if they got cancer, when they actually got cancer, only something like 12% actually did make all their own choices. I thought this was fascinating and found his conclusion about respecting autonomy not forcing independence to be the most compassionate.