Moving Right Along

Hopping Into the Home Stretch of The One-Legged Potato Sack Race at the Internet Picnic

Oh, right.  We're not doing potatoes.  I forgot.  And I guess that's supposed to be a three-legged race, but why anybody cares how many legs there are when they're inside a potato sack I'll never know.

Do you know what today is?  Yes, it's November 30, 2006.  Do you know what else today is?  Yes, indeed.  It is the last day of that international group siege of madness known as NaBloPoMo.

I'm very excited.  I was not eaten by bears.

In fact, this has been a very useful exercise for me.  I have had things I've been meaning to write about and meaning to write about for over a year piling up in my head and heart.  As some of you are already aware, I have another blog, too, one which I started last year but had to let dwindle and rot because I just ran out of silent space and clean energy within myself.  NaBloPoMo made me commit to sitting down and crafting each of my long festering ideas into something I think is worthwhile, and it made me work through that other blog on my intellectual reflexes, too.

Okay, NaBloPoMo didn't make me do anything.  My urgent desire to prove to myself that I could still make a commitment to myself and keep it, just for the sake of making a commitment to myself and keeping it, made me do everything.  NaBloPoMo was just the symbol on the flag I flew while did it.

Sometimes it takes space you create for yourself, territory you mark off and choose to devote and defend even in the middle of what feels like mindlessness and emptiness, just to reboot, just to make your mind and heart work together again in reliable partnership.

At the beginning, I said I was going to use this blog and this exercise to explore who I even thought I was now.  I said I was going to look for a better tag line than "past amputation, back to life."  I found one.  I really am past it, while also through it and in it, forever and ever, and I never did leave my life, as I have known all along.  I have chosen no longer to speak of this as though I have to sell the idea of getting past it or getting through it to other people.  It really is just another part of this fabric.  I'm going to be focusing more on the fabric now when I write here.  The motion, like wind in a sail -- or like legs in a potato sack -- will be inextricable, you'll see.

I still want to talk about the new law in Massachusetts requiring every resident to have healthcare coverage, and at the same time, I still want to sing rapturously to you of my latest stir-fry combination -- paper-thin leek circles, julienned fragrant celeriac and sweet kohlrabi, whole haricots verts, and rippled carrot coins with garlic, ginger, five-spice and juicy medallions of turkey "tenderloin" pan-seared all together in a very light glazing of toasted sesame oil -- and of the wonders of parsnips.  And I will.  But it won't be tomorrow.

It might not be in December.

I have talked a lot.

I am sick of the sound of my own voice.

I am sick of the pronoun "I."

I want to finish planting all my bulbs, stitching together the afghan I started when I was fresh out of the hospital but didn't yet have that commission from my friend Karen of a Christmas gift for her then-girlfriend (click above image to enlarge), and needed something to do with my hands besides eat.

I want to walk in the naked, spice-brown woods before it snows.

I want to tricycle past the bare trees now that the seizure light is back, the sun in my peripheral vision whipping through the vertical dark interruptions of their trunks, before the roads turn to ice.

I want to do things away from the computer, things that don't use words.

And I have to find a way to make a sustainable income that won't take away the partnership of my heart and mind again.

I'll be back.  I will.

But not tomorrow.

I want to thank Mrs. Kennedy (even though she doesn't want us to call her that anymore) for starting this insanity, and I want to thank everyone who played and everyone who helped by contributing administratively.  I want to thank all my friends and commenters old and new, members of a sweet little circle of bloggists and bloggery fans who have offered so many kind words and such interesting, thought-provoking input here and off-blog all month long and beyond.  I want to thank my true love for helping and for trying to respect my space during what looked to you like a silly pastime an awful lot like phone booth stuffing or flagpole sitting but was so much more for me.  Because of all of your efforts, I was not only symbolically enabled to snatch an opportunity to give myself back to myself in some surprisingly emotionally meaningful ways, but now I have lots of new and wonderful things to read elsewhere, many of which will no doubt wend their ways into the sidebar at left.

I've got nothin' for y'all but love -- oh, and this recipe for cookies I invented from scratch tonight as a parting gift to all of you, my fellow crazies.  Enjoy!

NaBloPoMoNana-Pecan Thin Cookies

2 iffy looking bananas (but not quite this iffy)
2 T grade B maple syrup
1 T vanilla extract
½ C salted butter
2 eggs
2/3 C brown sugar
1½ C all-purpose flour
½ t sea salt
½ t baking powder
4 handfuls of pecan halves, hand-crumbled

confectioner's sugar laced lightly with cardamom and ginger for enrobing

1.  Preheat oven to 375°F.

2.  In a cup, mash together bananas, syrup, and vanilla.

3.  In a small bowl, whisk together flour, salt and baking powder.

4.  In a big bowl, cream butter and sugar, then blend in eggs.  Blend in banana mixture.  Dump the dry ingredients in and blend well.  Crumble the pecans in and move around with a spatula until they are fairly evenly distributed.

5.  Drop by teaspoonful onto a nonstick cookie sheet.

6.  Bake for 15 minutes.

7.  While they are still warm, flop them around in a cakepanful of the confectioner's sugar mixture until both sides of each are as thickly coated as possible.

8.  Eat 'em up and only share them with people who have been very, very nice to you during the month of November.

Congratulations, everybody!  We did it!  BOO-RAH.  (Oh, why not?)

Driving Ambition

I have no right leg save a largely unresponsive mechanical one, yet I drive a car, and not by using hand controls.  How am I doing it?*

I have a removable left-foot gas pedal.

I have two people to thank for this:  my true love, obviously, since it was his 2000 Subaru Forester that he allowed to be cut up a little bit for the pedal's base to be installed, and my excellent sister who paid for it.  It only cost around $350 for the whole thing, parts and installation included, but what with one thing and another, we just didn't have it six months after my leg came off, and it would have been a long time before we could have afforded this without her help.  So thank you, Lynn!  I know we rarely communicate in any way anymore, but every time I drive, I think of you, with gratitude.

Here's what it looks like when it's not set up for use:

Isn't this clever?  The flange on the left with sandpaper glued on for traction is the pedal my left foot pushes when I drive.  This is attached via the crosspiece to that arm with the wheel on the end.  This wheel goes in front of the built-in gas pedal.  When I push on my pedal with my left foot, it applies pressure on the built-in pedal through that arm, and the wheel allows that arm to move up and down as the gas pedal moves back and forth under that pressure without much friction.  In front of that arm is another flange, a stationary flange.  While I drive, I rest my fake foot against that.  Because it is stationary, and because it stands out somewhat from the built-in gas pedal, even if I have some kind of spasm that makes me put pressure on the flange through my mechanical leg, the car will not accelerate.

This is the base plate into which this apparatus snaps:

Here's that plate viewed closer.

Notice how rusty it is after only two and a half years.  This is as much a measure of New England weather as anything else.  It's very wet here, as I've written many times, and in winter the roads get heavily salted.  Water and salt on the roads make for accelerated rusting of all our automobile underbellies, and water and salt on the bottoms of shoes and boots don't do nice things to parts like this.  However, as bad as it looks, it seems to be structurally sound.

You see those evenly cut slots running along the front?  The removable unit has little metal feet that snap into those slots.  This is what the unit looks like snapped into place:

Notice how the sandpaper-covered flange is parallel to the stationary flange.  This degree of verticality is the proper starting position.  Notice also how the car's built-in brake pedal hangs down completely unimpeded between my gas pedal and the built-in gas pedal.  Just as I once operated it with the same right foot with which I operated the built-in gas pedal, so I now operate it with the same left foot I use to operate the accelerator via my little pop-in gadget.

When I want to drive, I approach the driver's seat and shift all my weight over to my organic leg.  I lift my prosthetic leg up, hop right up so that the car doorway is touching my left calf, and stick my prosthetic leg in, positioning the foot as closely as I can to the stationary flange.

When I've gotten it as close as I can, I sit down and adjust the position of the prosthetic so that it is comfortable.  When I first started doing this, I had gotten so fat sitting around and eating, and my socket was so tall, that I couldn't sit in the driver's seat with my pants zipped up, so I had to put the seat all the way back and kind of lie down when I first got into the car (and to get out), unzip my pants, and then move the seat to an upright position.  Then the socket lip stabbed me in the gut the whole time I was driving.  I think it helped me tighten my abs.  Although I am tall, I am stocky, not leggy, so all this made it difficult for me to get close enough to the pedals to exert enough force.  It also made it difficult for me to breathe.  It also embarrassed the hell out of me.  Fortunately, these problems evaporated when I got my socket trimmed down a bit at my next fitting (because it really was too tall) and when some of my recently acquired belly fat melted away once I started getting off my ass more. 

Understand that I am hardly free of belly fat now.  There is not now, nor has there ever been, nor do I expect there ever will be anything like a sixpack anywhere on my body.  But things just got rather amplified while I was less active for those several months which included a few major holidays known for especially naughty foods which people kept sending me for cheering up presents, and I'm a compulsive baker on top of that, and baking in a wheelchair is not challenging if the only thing "wrong" with you is that you're missing a leg.  But I digress.

This is what the prosthetic leg looks like when I have it comfortably and safely positioned:

Just to give you the full idea of how things are when I'm all the way in and driving, this is my left foot operating the brake:

As you can see, I tend to lean my foot from the heel on the crossbar while I do this.  It doesn't interfere, though, and it is strong and firmly in place.

To remove the foot pedal, all I have to do is pull up on a ring which is linked to all those little metal feet hooked into all those slots in the floorboard.  This shifts the feet so that they slide to one side, so all I have to do is pull straight up and the whole thing comes out.

Because of all the rust, much of which appeared within only a few months of installation of the unit, sometimes this ring, just an ordinary, cheap key ring already coming apart but easily replaceable, does not function.  My Brilliant Engineer Boyfriend (aka my true love) figured out that all it takes to change this is one quick, very gentle tap on the black, rectangular cover over the crossbeam with a sledgehammer we keep in the car for this purpose.  Observe:

Usually it just takes one light tap at this angle, and then it comes right out.

Mostly, this has been a great gadget for me.  It's simple, it's straightforward, and it's proven a very nondisruptive adaptation.  However, I have had some issues:

1.  First, although I was told of the existence and complete ordinariness of such a device, it was extremely difficult for me to find someone who could install it.  All adaptive driving devices installed in cars operating in the U.S. must be approved by the United States Department of Transportation (DOT).  All installers must have special licenses.  Joe at the gas station on the corner cannot do this, even if he rebuilt your car practically from scratch after that last accident you were in.  That is, he cannot do it unless he is specially licensed.  And you know what else?  As clever and honest as he is, chances are he doesn't know anybody who is licensed to do this, either.  Likewise, the mechanics at the dealership where you bought your car are probably not licensed to perform this service, and the chances are that no one there will know where you can go for it, either.

My prosthetist had given me the name of a place in New Hampshire which does a lot of this sort of thing.  The week I called, their website contact form didn't work, their e-mail server was hosed, and they didn't get my phone messages for a week, by which time I'd gone elsewhere.

I went to four different state agencies before someone at a volunteer organization whose name and phone number I've temporarily mislaid (sorry! I'll find it and post it here someday!) read to me from a list over the phone, which list included one place near me, New England Wheels in Billerica, MA.  So that's where we went.

As it happens, my device is made by a company called Mobility Products and Design.  Another company which makes similar devices is DriveMaster.  If you go to either of their websites, it is probable that you will be able to find a dealer/installer near you.  I can't remember why I didn't do this myself.

2.  When I called New England Wheels, I was assured that this product was very easy to use and I would not be on my knees wallowing in snow in the winter trying to get the device in and out.  This is not quite true, especially since rust and that fraying key ring have had their way.  Still, it's really not that big a deal.  I have gotten used to it.

3.  The first time this was installed could easily have cost me my life.  Regard the picture of the pedal on the car seat at the top of this post.  You see that silvery bar poking out of the crossbeam on the lefthand side?  The incompetent who installed the first one of these not only cut unnecessary holes in the carpet and floorboards of the car, he also thought this little silvery bar should be shaved flat on one side.  We have no idea why.  The result of this, however, was that one day while I still hadn't been doing this very long, I accidentally slammed on the gas pedal instead of the brake and the whole thing broke.  The pedal was pushed flat up against the floor of the car, couldn't spring back, and had no effect on the built-in accelerator pedal.  If I had been on the freeway going 55 mph, I'd be dead now.  Fortunately, I was just leaving the parking lot at Whole Foods.  My boss came out of the store and drove me home, while the marketing director for the store followed him so she could drive him back.  (That kind of helpfulness was typical of my experience of my coworkers at Whole Foods, by the way.  I met some really, really nice people working there.)

New England Wheels replaced the unit with no charge, of course, and the guy in charge supervised the replacement personally.  I am lucky to be alive; they are lucky still to be in business.  And I would probably go back if I had such a need again.  However, if this ever happens, my Brilliant Engineer Boyfriend will be watching over the procedure with steely, detail-oriented eyes.

4. Even when not improperly installed, these pedals are made to give instead of break when tremendous force is applied.  Tremendous force can happen, I discovered one day at Jiffy Lube when I couldn't find the sledgehammer and couldn't get the pedal out of its base, when a strong man doesn't quite understand how this works and slams on the wrong pedal.  However, when that happens, the unit is not always completely incapacitated, and you notice it immediately, as soon as you try to leave the parking lot.  When it happened to my car, I was able to drive home with it the way it was, but I was freaked out.  My Brilliant Engineer Boyfriend examined the equipment and explained how to fix it.

This is an allen wrench:

It now lives in our glove compartment.  As you can see, the allen wrench consists of hexagonal bars in different diameter sizes.

These are the tightening screws on my gas pedal:

Perhaps you can see that they have hexagonal notches.  When someone who doesn't understand how my foot pedal works or isn't paying attention when he uses it applies so much force to it that he lessens its effectiveness, what we have to do is reposition the gas pedal so that it is properly upright and then tighten these screws to hold it in that place.  Barring huge amounts of force or other abnormal problems, it should hold perfectly well indefinitely.

5.  For most people to whom I've listened on this subject, the learning curve has proven steep on this gadget.  We get to a point after many years of driving where the motions are as automatic as scratching our noses.  Doing it from a whole other side, with the pedal order reversed and everything, can be a challenging thing to reprogram in ourselves.  It was especially challenging for me, because I am dyslexic, and situations of high stress do not improve this condition.  The first time I took a driving test, back when I was sixteen and still had all my original parts, I almost flunked because of hand signals given for turning.  I've been using those signals all my life, as long as I've cycled.  But under the pressure of my first driving test ever, I got left and right mixed up.  You can imagine how the stress of giving up a leg, having to learn a new way to drive, having to do it in a car which doesn't belong to me and which I can't afford to replace, and having to do it while so fat my own pants were suffocating me might not combine to facilitate my learning to go with the left foot on the left pedal and stop with left foot on the pedal still in the middle but now to the right of the "go" pedal.

So why didn't I get hand controls?  Oh, like that would be better.  Listen, I am the kind of person likely to run a car I'm driving into a tree or opposite lanes of traffic while changing the station on the radio.  The less I do with my hands while driving, the better for all of us.  Also, I believe that hand controls are not only far more expensive than $350 to purchase and install, but that they are not easily removable at will.  (I might be mistaken.  Shout out if you have some so we'll all know.)  Some hand control systems can be removed without leaving a trace, which is good if you want to sell your car to someone who doesn't need hand controls.  But I don't think I can use hand controls safely.  Still, since this is not my car, and since I will certainly never be the only or main person driving it, it was important to me that equipment adapting it for my use be removable and as unobtrusive as possible, and the little base plate really shouldn't pose that much of a devaluation of the vehicle all by itself.

My Brilliant Engineer Boyfriend was very patient with me.  He took me to a business park parking lot and let me drive around very badly, cry, scream at him, etc., until I became competent at slow speeds.  Gradually I worked up confidence and competence, and yet he has been very supportive and very generous with the car this whole time.  It helps that we are insured, but still, this is the only car we have, and he took a big risk.  I have never been a good driver even under the most congenial circumstances, though I have become a very careful driver.  His trust in me and faith that I could conquer this skillset are things I won't forget in a hurry.

In spite of all the issues I've encountered, I am very satisfied with this gadget, and so is my Brilliant Engineer Boyfriend.  It's simple, it's generally convenient for both of us, it's unobtrusive, and though it's taken me a very long time to get used to driving this way to the point where I feel comfortable in most situations**, I'm still happy with this choice and would recommend it to others enthusiastically.  I would just also make sure they knew about all these issues.  I would also strongly urge others to thoroughly learn and practice the system in parking lots, like I did, until its use has become virtually reflexive and to test out the limits of the equipment in some similarly safe location or slowly, over quiet roads, before once again venturing into high-speed situations or areas with lots of moving targets.

_____

* This is a paraphrase from one of my all-time favorite animated television series, The Tick.  In The Tick, two characters named The Human Ton and Handy appear to wreak villainy from time to time, in concert with other criminals.  The Human Ton is an enormous and not intellectually proficient individual.  He wears a nefarious hand puppet named Handy who clearly has a mind of his own, a keener mind than The Human Ton's, and at one point says something like, "He's eating, but I'm talking.  How are we doing it?"

It's okay if you don't know why I think this is funny.  Just go rent the DVDs (and make sure you rent the animated series, because that's the one with Handy and The Human Ton) and you'll see why I do.  Maybe, anyway.

(back up)

_____

** Situations in which I am not comfortable include but are not limited to the occasional crazy freeway we have around here where you exit at high speeds from the LEFT LANE and then maybe merge onto other freeways in the LEFT LANE.  (JHC, WHOSE INSANE IDEA WAS THAT, ANYWAY???)  Sometimes I drive around on our roads here with all their potholes, their ridiculously insufficient signage, and then complications like left-lane onramps, and I wonder why there aren't more amputees.

(back up)

_____

Final note: 

As I have mentioned elsewhere, one of the few things that ever makes me feel properly disabled is the fact that I can't just sit in any car and drive it, not even any automatic transmission car.  While I was researching life after amputation, while I was still considering amputation as still just an option to which I might have to resort if I wanted to keep my life, I ran across a very interesting item, but when I went to investigate it six months later, the site was gone and I could find no reference to the item anywhere.  It was some sort of kit that purported to allow the user to drive any kind of rental car, automatic or standard, using these parts that could be temporarily screwed on and then removed without a trace.  Brilliant Engineer Boyfriend thought it looked a little squirrely, and I don't know if the product had DOT approval.  However, it was a great idea and it would really make a difference in many people's lives if it existed.  If you have heard of such a device, especially one that is safe, functional, and DOT approved, I would love to hear about it, and so would many of my readers.

Swinging

Among other things, esteemed correspondent Bonnie blogged back in early May about a dance troupe of which she was a member.  Go check it out, especially the pictures.  Then meet me back here to discuss.

When I read this, I found I had a lot to say about this.  It stirred that big pot of memory fragments ever composting in my head.  Of course, it is only due to the miracle of NaBloPoMo and the fact that Gilmore Girls has jumped the shark at least sixteen times in the last half season to the point where I have utterly lost patience with it and no longer care what happens to these characters because they're not even the same characters anymore that I am sitting down to write about this now.  And now a lot of other compost has been added in since.  So now it's become something more than just an old odor released by a moving stick.  I'm not sure what, but I'm going to take it out and look at it, grain by grain.

When I first read this post, I was deeply moved, as an artist, as a dancer (a strictly amateur dancer), and as someone who cares about Bonnie.  How great to fall in with people so open and creative and daring!  And supportive!  And how great to fall in with people who understand that artistic beauty is as much about finding stuff out as it is about presenting a finished whole.

Somebody ran a search through my site right around the same time looking for a definition of "fine art," which was the subject of an essay I used to have posted over at my art site but have taken down temporarily while I decide how I want to represent my art career on the web.  Well, if you're still looking, this is part of the answer.  So-called "fine" art is ars gratia artis, art for art's sake, art whose sole end is the art and only the art.  It's not called "fine" because it's somehow better than other art; it's called that based on the Latin word "finis" which means "end."  When you create "fine" art, you are not creating a vehicle for a message for a client.  You are not illustrating someone else's desired communication.  When you create "fine" art, you are an explorer for the sake of exploration.  You are asking questions sometimes on a cellular level, and you never stop no matter where those questions take you.  You ask them in your own language, and you tell them and whatever answers you find to others the same way, as you go.  That's what was happening in the rehearsal that Bonnie shared with us.  It was a little curtain she drew back for a moment on fine art, in the making.

What's interesting and, for me, the most fun thing in the world about art, any kind of art whether fine or commercial, is that you really never know what it's going to do in the heart and mind of its audience.  Every person is different; every person sees in his or her own language and catalyzes and metabolizes information and creation in a unique way.  One person rarely sees the same thing as someone else.  People rarely see the whole thing in one take, and not every person will look twice to see more.

A one-legged dance, where people who actually have two legs are only one-legged because they have bound themselves up that way, can be a powerful metaphor for a lot of things.  Me it hit literally, though.  In me, three images of a possibility brought back a sharp sliver of my life right before my amputation surgery, and what it was like immediately afterward, and how I learned to be a little afraid before I could be brave again, and how that probably saved me a lot of trouble in the long run.

And that just ladders onto other memories.

Eight thousand years ago, when I was enrolled as a freshman at UCLA, acquaintances of mine taking a sociology class were assigned the classic experiment of one person wearing a blindfold for a week at all times and another person accompanying her to make sure she played honestly, to take notes, and to help out and keep her partner physically safe throughout.  Part of this was to raise awareness of the needs of blind people out in the world and how we might meet our civic obligation to the blind with whom we share our cities.  The idea was that sociologists would need this kind of firsthand experience to better perform whatever would be their future jobs.  Another part of this was simply to give some young people an idea of what it might be like to live with such an impairment.

Eight thousand years ago, I was eighteen years old, not as spoiled as I could have been but more spoiled than was probably good for me, and I thought this exercise was just the grooviest, most thrilling, most heartwarming thing I'd ever heard of.  Since that time, I have gone through some things.  I've also read a number of disabled writers -- and feminists -- castigating such experiments in all their forms as shallow, sensationalistic and also fairly useless, and I've been thinking about what they say.  One of the better explanations of their position that I've heard is in Episode 2 of the Ouch! Podcast from BBC, wherein one of the guests, a blind waiter named Liam O'Carroll who works at the London restaurant Dans le Noir, very clearly explains the difference between eating one meal in novelty pitch blackness and being blind all the time.  And the main things people don't really understand when performing these little awareness raising exercises is that (a) in order to survive, most disabled people have become over time far more skilled at being disabled than any ability vacationer ever will be and (b) it really is different when you know you can take the blindfold off, get out of the wheelchair, or just untie your leg.

I'll tell you what else.  Falling is different.  Falling, for example, on a leg you've tied up is a whole other experience than falling on an amputated stump.

I've made at least three impossible phone calls in my life, all of them ending in me taking impossible actions.  You know what I mean.  There are things we cannot do but we have to do, so we do them, but we never really know how, what laws of physics and psychology have yielded to allow us to go through with these things.  One was when I'd taken an AIDS test and dared to call for the results, only to be told I'd have to come in in person, which I somehow managed to do even though I was so terrified I couldn't feel the pavement while I walked to the clinic and everything looked burnt white. Another of these calls ordered the death of a beloved cat, suffering unbearably in a veterinary hospital in Boston and me with no way to get to her and be with her while she was eased out of the world.  I placed a more recent impossible phone call three years ago when I called to set a date for my own amputation.

After I made that call, I decided that it might be a good idea to start practicing doing stuff on one leg.  I had a pair of crutches in the basement left over from another surgery.  I went around the house on them, up and down stairs even.  Since the tumour in my knee was the size of a cantaloupe, I couldn't bend my knee far enough to tie the leg up out of the way as the two-legged members of Bonnie's dance troupe did.  Even if I could have surmounted the pain, doing so would have ruptured the tumour all over again, encouraging further metastasis of the cancer.  So I just made a conscious effort to keep that foot off the ground as much as possible.

It is not the same.  I am here to tell you, it is not the same.  You cannot mimic the real experience of this.  A leg like mine might only weigh about 12 pounds out of 200, but that's a very strategically placed 12 pounds of ballast.  Even folded up out of the way of the ground, you still have that ballast.

The other thing I tried but for which I was unable to fully prepare myself was the loss of the possibility of, for lack of a better expression, fall-back.  When I practiced on the stairs with my bad leg off the ground, I always knew that if I lost my balance I could just put that foot down and stabilize myself.  If I had folded my leg and tied it up, I would still know that I could stop doing that at any time.  Also, falling on a healthy knee or the thigh or buttock linked to a healthy knee, as in the case of a leg tied up, is in no way the same as falling on a stump end.  You might hurt your knee.  You will probably not open sutures or poke a sawed-off bone through reattached tendons.  And you know this, you know it in the very marrow of that as yet unsliced bone.  You expect falling to have consequences, but they're not really scary consequences, certainly not the kind of painful that goes with horror and terror, abject terror of further horrifying consequences.

While interviewing him and previewing his rehab facility, I told my physiatrist and a case manager that I'd been practicing.  They exchanged a look I couldn't read.

When I was three days out of surgery, off all drugs and all tubes and lines, I could use a walker, bathe, and toilet myself and was ready to get the hell out of the hospital and get home to my cats or start biting people on the leg.  The physical therapy team wanted to be sure before I was released that I'd be able to climb and descend stairs without hurting myself.  Stairs had to be mounted to enter my house from either the front or back door, and once inside, stairs led to the basement where dwelt our laundry machines.  It had snowed the first time that season as I was being wheeled into surgery, and there would be more snow, and it would cover our front steps and congeal into sheet ice. 

I boasted that I was a crutch expert.  I'd been practicing.  I knew all about stairs and they were no problem.  The physical therapists wanted to see.  One of them also wanted to be in my space while I demonstrated my profound skills, and I was very worried about hurting her.  She was tiny, and I didn't know where to put myself with her around.  I worried about knocking her down.  I even worried a little about falling on her.  I really did not understand how very skilled and knowledgeable these folks get before anyone lets them do this kind of thing.  So I shooed her away. 

"Fine," she said, crossing her arms.  "Go on, then."

"Okay.  Thanks." 

I was standing on one foot at the top of a long, concrete staircase down inside the hospital.  There was no other foot.  There was nothing to brace me if I lost my balance.  I had a crutch I'd brought with me under each arm, one leg and only one leg, and this staircase to descend.

Piece of cake.

I put my crutches on the first stair down, lifted my one leg, and swung.

And SWUNG.

I swung like crazy.  I swung harder and faster than I'd ever swung practicing in my house with 12 pounds of ballast I could unconsciously adjust to save my balance.  I flew out over that cold cement landing like a child on a swingset, landed hard on the top step, and began screaming at the top of my lungs.

It hurt so much.  It hurt more than you know unless you yourself have done something this stupid.  It didn't just hurt my pride.

Actually, I landed on my capacious posterior, as I always have when falling down stairs or anything else.  I have grown very fond of said posterior partly because of its cushioning qualities.  I'm also  very skilled at falling after years and years of practice, so though I usually am not even conscious of doing it, I almost always position my body mid-fall to land this way.

But this time I had a newly sawn off femur, newly rearranged and anchored muscles, and an approximately ten-inch span of cut flesh sewn tightly together just three days before.  I was already functionally wounded before I fell.  So when I landed on that plush, well-trained and experienced cushion, it felt like I landed smack on the bottom of my stump and opened up all my stitches.  And that's why I was screaming.

The F word got a lot of use over the span of a very short time that day, and I'm surprised they didn't reflexively plug me full of drugs just to shut me up.  But a nurse who liked me came running, checked my big-ass surgical wound, and told me I hadn't landed on it and it looked fine.  It was an illusion of nerves, just like the intense phantom sensation I would eventually experience as a complication of sciatica.

I was so embarrassed.  Hubris and I are old sparring partners, but still, I had been so cocky, so completely sure I knew what to do and even, to some extent, what it would feel like.  I had been so wrong.  And I had been so lucky.

After that, I rested, and then I humbly asked the PTs to show me another way to do things, which they kindly if sternly did.  I was shaky.  I have not been cocky around stairs since.  But now I really do know how to use them safely, on two legs of course, and on one leg, really on only one leg.

I've fallen a lot since then, just like I fell a lot every year of my life before amputation.  Every time I fell while the wound was still healing I landed on my ass, and every time it felt like I'd landed on the end of my stump and opened up all my stitches.  Every time.  And every time I fall, no matter what else, I always make sure my stump is pointing up, with the end away from whatever surface is coming up fast to greet me.

And this is now both a reflex and an instinct.  It's something I know I have to do in the marrow of my sliced femur.  And this is something you can't know, can't feel, cannot possibly emulate by tying up a fully functional leg and hopping around a studio.  You're just going to have to take my word for it.  And any metaphoric one-leggedness you might create in a dance studio will be empty of a sense of potentially cataclysmic loss of control coupled with deep, sucking fear partly of pain but mostly of unnameable other consequences, empty to you and empty to all the people in your audience, except the ones who know what I mean because they've been where I've been and felt it, too, or somewhere similarly scarring I can't imagine.  And that's something you can't know, and can't control, but risk blindly when you play with this for art's sake.

And that is not a criticism or a plea to stop.  Even in the interest of the finest fine art, though, even in the interest of the most catalytic or cathartic bombs such art might set out in discrete portions of any audience all unbeknownst to the artist, perhaps you will understand how deeply I mean it when I say I would really like it if no one else ever had to find out what I'm talking about here, not exactly.  There are other, better paths to knowledge and art, humility and grace.

Or so I hear.

Search Engine Grab Bag: Get Well Wishes for Amputees

Since I started this website, I have striven to answer a number of different questions about surviving amputation that have come my way, as well as questions I already knew existed because I asked them myself when it was my turn.  Sometimes this means sending you somewhere else for the answer.  Sometimes this means telling you what I've learned on my own or from other people.  Sometimes all I can give you is my own take, with the understanding that I am not a credentialed authority on, well, anything.  I'm a subject matter expert on my own life, sure, but on other people's only insofar as they have touched mine while I was paying attention.  I'm thrilled to share resources, and I'm happy to tell you what I've seen and felt, and what other people tell me they see and feel.

Sometimes people I know or meet just come right out and ask me stuff, or vice versa.  Sometimes people come here looking for things, and I know what they seek because I see their search strings in my stats.  Increasingly, as the site builds, I am gratified to note that many of the answers they seek are already represented here, or will be soon as they are incorporated in things I am already working on.  Sometimes, though, people ask search engines things I had no intention of addressing, hadn't even thought of, in fact, 'til I saw what they'd asked.  I've started this whole new category just for such questions.  I'll be going through my old posts and linking some of them in here, too.

Tonight's question, which I must answer in less than thirty minutes because of NaBloPoMo (before the inevitable OCD-driven rewrite begins after midnight), is one that showed up in my stats a couple of months ago.  I will translate the search query into English for convenience:

"What should I write on a get-well card for an amputee?"

Another way it showed up was like this:

"get well wishes for amputees"

Now, I don't know if this was some greeting card publishing company employee looking to fill a niche because of the war and America's aging and increasingly diabetic population -- and gosh, I really really hope not -- or if this was one or more people genuinely looking for the words to write to someone upon learning of an amputation, impending or recent.  For the purposes of this post and the shriveled walnut I'd not like my heart to become, I'm going to assume the latter.

Here's my advice. 

First, call, don't write.  I guess you could e-mail, but only if you can keep it as casual as a phone call, and only if you know this person has immediate internet access, which s/he might not if s/he's still in hospital.  If your friend or relative or coworker or acquaintance is stuck in a hospital, unless s/he's drugged up after some horrible trauma and completely out of it for awhile, I guarantee you s/he wants to hear your voice, one way or another.  Hospitals are terrible places to hang out.  Also, if the person of whom you're thinking has not yet had an amputation but expects to soon, you should still call.  Unless this is one of those rare cases where there's a limb that was born on the person in such a way as to be more of a hindrance than a help and the amputation is actually going to make for an easier, more productive and enjoyable life, this person is no doubt terribly sad and frightened.

When you do call, or e-mail, don't tell this person how to feel.  Start the conversation with, "Hey, I heard what [has happened/is happening] to you.  How are you doing?"  Then listen.

If this person says s/he feels miserable, then you can say you're sorry.  Say you're sorry s/he's suffering, though.  Make sure this person hears how happy you are that s/he's alive.

Ask if there's anything you can do.  Ask if the person wants company, but don't insist on visiting.  Sometimes we feel icky and gross and not like having company right after surgeries, you know?  On the other hand, sometimes we know we look and smell disgusting but don't care because we are so very desperate for contact.  You let your friend tell you what s/he wants, and then respect his or her wishes.

Let the person know you will be available to help.  Then really be available to help.  Ways in which you may be called upon to help include driving the person to doctors' appointments and waiting, sometimes a very long time, just for the patient to be seen.  Your easygoing, cheerful company during such occasions will be invaluable.  Also, after the hospital, your friend might be housebound for some time unless other people come to take him or her out.  Outings are big, and they are work for everyone involved, including the new amputee, possibly involving hauling of equipment and physical support over things like icy pavement, but they can keep away depression and wallowing.  I will be grateful for the rest of my life to all the people who drove me around and just took me out -- to dine, to shop, to go look at things besides the inside of my house -- before I could walk and drive myself around on my own again.

But I must repeat:  no matter what else you are able to offer this person, when you talk to this person about what s/he's going through, make sure you mostly listen.  You can ask questions.  Questions are good.  Do not spit platitudes at this person.  Here are some examples of things NOT to say:

"Everything happens for a reason."

"God never gives us more than we can handle."

"Where there's a will there's a way."

While you may firmly believe all these things and the many similar permutations which have been known to come spilling out of people's mouths reflexively like spittle during a bad drug experience as soon as anyone they half care about gets into trouble, your friend might not.  Maybe s/he believed it last week, but then this happened, and s/he doesn't anymore.  While this might worry you, it is not your job to correct this person's attitude unless you already have that kind of relationship.  If you had that kind of relationship, though, you wouldn't be asking me what to say because you'd already know.

Even if it is your job to correct this person's attitude, you aren't going to do it babbling nonsense just because it sounds good and should be true.  Your only hope for making someone in trouble of any kind feel good is to start with loving that person and openly revealing your love even if s/he's a crankypants over having an arm ripped off by a tractor or having to give up both feet because of that drunk driver on I95.   It's imperative that you treat him or her like s/he is the same person s/he's ever been.  It's also imperative that you let this person mourn what s/he has lost in a meaningful way.

Do bring news of the outside world.  Do ask if there's anything else this person would like you to bring.  If you are going to send food, don't send cakes and candy, send real food that can feed the household sensibly.  Bring a casserole or something.  Lay off the fancy boxes of naughty things.  One of my boyfriend's tai chi colleagues gave us a casserole dish full of Chinese dumplings she'd made from scratch right when I came out of the hospital.  I lived on those for two days while I was too weak to cook for myself and my boyfriend had to go to work and leave me alone all day.  On the other hand, well meaning relatives sent me cakes and candies that made me sick and fat while I binged on them mindlessly because I was physically bored.

Do respect this person's wishes, whatever s/he tells you, and this person's process and feelings. 

If you don't feel comfortable interacting with the person in question on such an intimate level, or if you feel that platitude-spitting twitch and just can't shut it down, or if you feel like you just aren't going to be able to prevent yourself from turning this situation into a TV movie-of-the-week-worthy production starring you as Bette Midler in Beaches, stay away, don't call, and don't write, not anything at all.  Send flowers or balloons only if you know the person isn't allergic.  If you absolutely have to send something, though I can't think of a reason if you aren't even close enough to pick up a phone, send a non-sappy, non-religious card with a note to the effect that you hope this person feels better soon.  Period.  No poetry.  No flowery sentiments.

That's my take, in a nutshell.  I'd love it if others who have been through this would offer their own feelings on this subject in comments.

Thanks for asking.

Look Away, Now; Graphic Crime Scene Photos Follow

Just a little pumpkin, just one tiny ornamental splash of orange in an otherwise beige November.  I mightn't even have noticed the loss, were it not for the envelope left in its place.

Inside, a wizened brown stumpish thing, could've been a finger, could've been a stem, and a note coarsely sketched in large, primitive letters:  "Fill feeders or Pumpkin gets it."

"Of course I'll fill the bird feeders," I thought to myself, "right after I return from lunch."