Taller than yesterday

This week I had an appointment with my prosthetist to make a couple of subtle adjustments on my left leg. Tom made me this socket in October but my winter was physically difficult. Too many missteps, falls and strains. My remaining original-equipment knee was perennially achy. The insurance overlords denied me a new brace. 

But this summer of a spring must be helping, because I feel that old eager-to-move energy. And my leg just isn't keeping up. I took a look at the way the angle the knee is attached (hydraulic one, that is) and remembered that Tom set it so as to give me the most stability. I walked on my dirt driveway and thought about my stride: definitely choppy in a subtle way. I could feel my leg wanting to reach. And the height of the leg felt...short.

Tom is my third prosthetist, which is what happens when you are an above-knee amputee and former horse trainer too focused on proper way-of-going and hoof health. Now that I'm the horse, I do my best to spell it out until I say, That's great.

All my leg-makers have said, But you're hips aren't even. You're low on the left.

True. I spent thirty years walking with my left leg fused solid at an angle slightly more open than ninety degrees. (Try the play-at-home game. Bend your knee. Now walk. Think about thirty years of this. My kids and their friends attempt to mimic it. It's entertaining, even more so when adults try.) So although my chiropractor got my back straight within eighteen months of my amputation, psychologically I've always felt off balance when my hips are level.

But lately I've felt short on that side. Part of it is the stretching and massage work; part is my ailing right leg screaming at my mechanical leg to cowboy up and pull its own weight already. And maybe it's time to be taller and straighter.

So after Tom adjusted the knee-to-socket connection we experimented. He has this convenient Birkenstock sandal thing, and I buckled on the quarter-inch sole and walked around the room. It was fabulous. He put a quarter-inch lift in my left shoe and sent me on my way.  I'll go back in a couple weeks and he'll make a more permanent fix by lengthening the metal pylon that is my left shin. 

Now I feel the difference with every step, a combination of stride and balanced height that no longer threatens to tip me over. My left hip and stump of thigh are working harder, and that feels wonderful. My right knee is grateful and says it didn't mean to whine so much. And it's cool to be this little bit higher all of a sudden. I just wish a few of my horses could have put their own gait-issues into words. 

a.k.a. AKA (but not Iko Iko!) Get it?

Answer: also known as Above Knee Amputee. And I'm not here to set anyone's flag on fire but to mention that it's A-Week.

"A" is for the last demographic (I almost wrote demongraphic: Freud much, Liz?) that it's OK to shy away from, ridicule, fear, or vote against for president.  (And most political offices.)  I called myself an agnostic for a while, and also a humanist (which I still am) but last year I stopped beating around the bush. 

The idea of an intelligent higher power that cares about, controls, or has any effect on my life whatsoever is repugnant to me. If there was ever a child test case who lived to tell the story, it's me. My family and church bet my life and limb (left leg) on their belief in the power of "God."

It didn't work.

Beyond the wrenching image of a child suffering bedridden with a bone disease with no painkillers, antibiotics or medical attention of any kind for a year, beyond the questions of parental criminal neglect and lack of intervention by local agencies, beyond the state law which permitted this treatment in the first place, no god came to my rescue.

Got it? 

Christians of all stripes still argue with me. They tell me my parents should have known enough not to rely on prayer alone. They tell me we studied the wrong religion, implying we prayed in the wrong way to the wrong god. They tell me (grudgingly, but they say it) that I didn't have enough faith or understanding. I was thirteen at the time. Then they say, "But you survived! That was the miracle!"

It was not a miracle. That time was horrible. It was horrible for a very long time after. It's still horrible some days, and it's been 37 years. I was not healed. I prayed and suffered, endured obediently and survived. I tried to find the combination of thoughts, knowledge and understanding that would stop the pain, maybe even instantly. Does this sound like a form of...torture?

I was left with a wrecked leg, a fractured way of thinking and the deadened eyes of  a child soldier. Mine was a perfect storm of unfortunate events. But it goes on every day. (So-called "spiritual treatment" of children that allows parents to reject medical attention is legal today in 38 states.)

I have reasons for believing in the incredible power of human beings to survive and overcome horrific odds. I have reasons for refusing to attribute cause and effect, free-will or destiny, to a god. I have reasons that many people can respect, no matter what they believe. Please do me a favor. Before you judge the next atheist you meet, walk a mile in her shoes. Walk a mile on her legs. If she has two legs. 

Jockomo feena nay. AKA!  Happy A-Week.

How My Amputation Turned Me Into A Horse

I know. The math doesn't work. Two legs minus one is not four. But stay with me for a minute.

I pretended I was a horse when I was a kid: I cantered and trotted everywhere, crunched apples and carrots, whinnied and nickered, and jumped over anything that didn't move. Sometimes I allowed me to ride myself. Sometimes I was too wild  and bucked myself off. (Figure that one out.)

Beginning at age six I rode real horses. Pony rides led to riding lessons, then trail rides double with luckier friends. I had an unsuitable pony, then another that was meaner, smaller and ultimately very beneficial for me as a rider (read: typical Shetland). Then Flicka, my first true horse-love. She was eventually a casualty of my bone disease ordeal, but selling her to buy a more reasonable mount was my first adult decision at sixteen. It led me to England where I was certified by the British Horse Society, then here to upstate NY where I taught lessons, exercised racehorses, and eventually ran my own small stable. Along the way, I fit saddles to equine backs, trimmed hoofs and did a little shoeing, and taught young horses to balance with a rider. Little did I know my eventual amputation at age forty-five would reincarnate my equinized self.

Let me impress upon you the importance of comfortable equipment. As an above-amputee I wear a prosthetic leg attached to a socket made of a rigid carbon fiber that covers my stump  to my hip and crotch. Liners and stump socks are fine, but they can't make up for a bad fit, a socket that's too big or too small, or an edge that rubs me raw. Am I clear about this? A hard material in a suitable shape is perfect, while all the padding in the world won't stop chafing when the form is wrong. I've used wads of sheepskin to try to make-do until I got to my prosthetist for an adjustment. Here I'd like to formally apologize to any horses in my past with marginally-fitting saddles that I made-do by layering an extra saddle pad (or gel pad, or wedge pad, or lollypop pad). There is NO substitute for tack that fits the anatomy. No, a socket is not a saddle. But a sore is a sore. Believe me.

Now feet. Or rather, foot. I've always prized a good farrier (horse trimmer & shoer) and I want my horses sound and square, with corrective work if they need it. When I got my  artificial foot, I stumbled across the hard truth under the theory of equine conformation. A foot that turns out is bad. And a foot that turns in is much worse. If mine isn't tightened enough, it turns. If it turns out, I waddle and lurch. If it turns in, I fall down and shout bad words. I don't tinker much with my fancy fake leg, but that foot direction is critical. I made my prosthetist teach me how to adjust it. I keep that little allen wrench handy. And I'm telling you, find your horse a decent farrier. I cringe for the horses that toe in. 

And the last part of my life as an ampu-horse-tee is this balancing act of walking. My prosthetic leg is basically a big hydraulic hinge. It's got no computer-gizmo so once it bends, I follow, or fall down. Gravity giveth and gravity taketh away. That's walking: controlled falling, minus the control at first. Straight-legged, the limb holds me. So in the early days I spent hours between PT sessions walking on my deck with a hand on the railing. I walked forward. Then I walked backward. In classical European riding and training (dressage) you never teach a young horse to back until advanced levels. The fear is that the colt won't move forward freely. I've seen critters taught (or allowed) to back too soon that learned to rear to avoid anything.  It's an effective disobedience; after a while, no one rides them. But when I learned methods based on the vaquero style of horsemanship ("natural" horsemanship) I learned to ask horses to "unlock" by moving in any direction. It's the freedom and balance of movement that's important, the quality and willingness rather than direction. And then I found myself needing to unlock my motion. 

Backing helped me find my center in my new gait. I walked forward and backward, back and forth, along the deck as my horses watched interestedly behind the fence. My foot was adjusted forward; my socket fit comfortably without padding. And I pricked my ears, swished my tail, and backed on into my new way-of-going, hoping for carrots. So far, there've been plenty.

Dragon Leg

Time for a gold dragon to liven up a March day: This is a picture from two years ago of me in my backyard pond and the leg I had then.  I found that wonderful fabric for the socket and had the socket-makers put it on as the finishing layer. My prosthetist said it made quite an impression in the office: they referred to me as The Dragon Lady.  (And if the shoe fits...)

The knee is an Otto Bock 3R60 EBS ("ergonomically balanced stride": this won't be on the final), a hydraulic knee that costs around $5,000, the dollar-store model compared to the C-leg (computerized) that starts upwards of $25,000, and the Genium which costs four times the C-leg... My humble hydraulic joint is for "active amputees" and is supposed to be excellent for camping and golfing. (Cutting firewood and chasing loose horses weren't mentioned but it works pretty well for those, too.) The knee stays locked when my leg is straight with my weight on it, and flexes as my weight shifts onto my toes. But once it bends it's like a hinge and there's no support. I can stand and shift my weight from foot to foot, but if I bend the knee too much, down I go. I used to drop without warning at cookouts during my first summer as an amp. One second I'd be holding my paper plate of grilled chicken and chatting with my friends. The next instant, WHOMP. On the grass.

These days if I fall it's usually because my prosthetic foot drags and catches on something. Then I leap instinctively to catch my balance. Or I fall and try to roll with it as forty years riding horses taught me.  I really like this knee. It's not computerized, so it can't sense when I fall and seize up to hold me, but it's pretty reasonable. Most of my limitations are the result of problems with my other (organic) leg which suffered the brunt of my extremely active life. My gait with my artificial leg is only as good as my osteo-arthritic knee. Ten years ago a doctor told me I had the foot of a seventy-year old. (That one's gone now. I have a tracing of it that my daughter did at the hospital right before the amputation.) And now my "good" knee is like a seventy-year old's.I wore out the prosthetic knee in the photo, and the socket never fit very well.  Now I've got a blue tie-dyed print  socket finished with my favorite T-shirt, and another knee the same model. The old one started clanking; now it's in the closet as a spare.

I'm not sure what model the foot is but it's heavy-duty. I've had it five years now and I really like it. It's got a plastic foot cover so it looks normal under the sock. I change the sock maybe once in six months after it gets holes in it, I guess from rubbing on the metal. I don't pair up my socks anymore. What's the point? I don't mind when the dryer eats them. I only need one. It's liberating.

And swimming: I love it.But that's another story.

"Sorry I'm late--my mom couldn't get her leg on."

Yes, our middle school's secretary hears this sometimes. And a few years ago I was an hour late for my job thanks to the temperamental pin-lock system securing my prosthesis.  And last summer during a week-long writing retreat at the Highlights Foundations' Pennsylvania farm, a critical kevlar string frayed and snapped. (My high-tech, hydraulic artificial limb depends on the equivalent of an O-ring.) I spent the rest of that week on crutches. One friend calls this version of me "the tripod."  

My boss wasn't sure what to say when I arrived after calling in late/legless. He looked at my feet. "Are you OK? Are you in pain?"

I explained it's more like when your car won't start. He glanced at me and hurried away. I felt bad for him. 

My leg is attached to a carbon fiber socket (with a custom finish pattern: this one is blue tiedye like tiger stripes) that covers my whole stump up to my hip and pelvic bones. Its's a Comfort-flex socket, and my weight rests on my ischial tuberosity (Note: vocabulary word & will be on the final) up the inside of my thigh rather than the thigh bone which can't  take pressure. I wear a gel-lined cover on my stump. A fitting on the end holds the screw attached to the Mighty Yet Breakable kevlar string, which threads through a hole in the base of the socket. As I stand up, my weight settles into the socket and I pull  the string until the mechanism cinches it  tight. (Pushing a button on the inside of the socket releases it.)

I've learned that having an excellent prosthetist is even more valuable than a good car mechanic. I've learned to keep lists of questions, get second opinions if I need to, and not settle for Close Enough. I usually leave my leg dressed in jeans and shoe when I take it off at night. It's easier to change shoes when the leg is off. The plastic foot covers the metal leaf-spring of the foot which is fairly rigid, hard to dress with the leather high-top riding shoes I usually wear. I can't travel without my shoehorn. I set off bells and whistles at scanning booths at airports and public buildings. I tell them I have a prosthesis before I trudge through the doorway. The alarms go off. I step aside, stand with my arms out and submit to wanding. It's annoying but I'm used to it.

Right after I got my first leg, my daughter  took me to Show & Tell at school. I wore shorts. The kids crowded around  and fired questions at me. Does it hurt?  Do you take it off? Can you get it wet? And, Can you do this?
  
Crawl.

I said, "I don't know." I found myself on hands and knees on the rug being ordered to attempt the practical movements of first graders, things the physical therapist never even mentioned. Sitting  different ways, crawling and kneeling, crouching and bending. The kids were curious and didn't care I was slow and awkward. Some things I could do, some I couldn't because the leg doesn't hold me when it's bent; it's like a hinge. But this gang of seven-year-olds studied and encouraged me in a way that was both tough and sympathetic. They liberated me to experiment.

After that, when I limped into the school I was often mobbed by kids. My daughter would triumphantly yank up my pants leg to shock the skeptics who hadn't yet seen Robo-Mom.

And the teachers have never complained about those occasional odd excuses for my daughter being late. I guess it's a fringe benefit.

Frosty Flicka

When I was twelve years old I bought an appaloosa mare named Flicka for $400. I'd sold my my outgrown little pony Dragon and I had sky-high hopes: trail riding, jumping and showing at the 4H fair. After looking at more reasonable mounts, I tried this rangy, half-broke six-year-old I could barely ride. I fell in love. I'd been devouring horse books since I could read--now I was the heroine in  my own story. We bought Flicka. 

She was red roan--a mottled chestnut and white appaloosa pattern--and had a star and stripe on her face, and a silver-dollar white spot on the left side of her barrel. She was fifteen hands one inches of  power, strength and freedom. I was willing to take on training her because she was the horse I planned to own for the rest of her life. My horse.

Flicka was impossible. She charged at me and my friends in the pasture. She bucked and plunged, bolted and once sat down on a trail ride. She was defensive at feed time, spinning around to bare her teeth at anyone looking over her stall door. Other times she was playful; she'd lean over the door, tip her head sideways and dangle her tonge out her mouth. To gallop her bareback was to catch a ride on the wind. If I fell, I brushed off my jeans, wiped my tears and went to catch her again. 

I kept her at the barn down the road from my house on Wood Street in Lexington, Massachusetts. After six months I found a woman to help me. Her advice, a stronger bit, and the ride-the-legs-off'em approach gave me an intense summer of progress. I rode Flicka all over Lexington and Bedford, jumped her, and started a small collection of show ribbons on my curtain rod. We were on our way.

Everything changed that November when I was thirteen. One Saturday I rode Flicka and later biked to a friend's house. We ran in the woods, revelling in the mild day. That night my left knee swelled and grew hot and painful. Two weeks later I was in too much pain to go to school. Within another month my leg was draining pus. I couldn't get out of bed. I didn't put my hands on Flicka for eighteen months. 

When I did, I was almost fifteen and a half. It was spring 1977. I'd missed most of eighth and ninth grades. I'd lost track of my friends. I'd glimpsed Flicka on the occasions when my mother led her down the road to our house so I could see her out the window when I couldn't get out of bed. Now I swayed on crutches, shaken from the half-mile car ride, my first in a year and a half. I wobbled, balancing carefully to keep all weight off my wrecked left leg. I  hooked my hands onto the woven wire pasture fence and called. Flicka stared at me. She saw me.  She knew me. She walked to the fence and nuzzled my fingers.

It was never the same. A few months later I rode her although I didn't walk without crutches for another year. But Flicka was sour and spoiled.  She'd been fed and watered, had her stall cleaned and her feet trimmed, but without the dialogue of riding and discipline with me, her human, she'd grown  irritable and skeptical. She'd become as alien and frightening as my own body. I tried to find the way back to the relationship I'd had with my horse but after a year I gave up. I could get on Flicka as a passenger, or I could sell her and buy a quieter horse that could help me find my confidence. I could be Flicka's owner or I could be a rider. But not both. I sold her in the fall of 1978 when I was sixteen.  

I did find my riding seat and confidence on other horses, so much that at eighteen I went to England to be certified as a riding instructor. Back in the USA, I trained freelance and exercised racehorses. But I was conscious that when I coached someone trying to ride a snotty mare down a trail it was a form of time travel for me. I was still training Flicka so our story would have a happy ending.

To this day I have a weakness for red roan appaloosa mares. I've owned a few. As I write this, two are standing fifty feet from me. It all started with Flicka.

My Many Legs



I say I have one leg because the left one is gone, but it's more complicated. For thirty years I walked  with a crazy, bobbing limp; my left knee  fused solid during the bone disease in my teens. (Vocabulary word: ankylosed. Will be on the final.) By the time I was eighteen I was used to it. I didn't think about how I moved when I was alone, but I was always reminded by the reactions of people who weren't familiar with my weird walk. (And this triggered my shame that I had failed to be HEALED through Christian Science. More on that later.) But for thirty years I limped on a bent leg. I could climb ladders, cross-country ski, drive standard-shift trucks and tractors, walk for miles, and ride any horse I saw, but  my leg was rigid at an angle slightly more open than ninety degrees.

I still have the sensation of a whole left leg. At first it felt bent all the time; when my thigh lay on the bed, my knee felt bent and my calf and foot passed right through the mattress...very strange. This is phantom sensation, different from the crazy shooting jolts that are phantom pains.  (I take meds to keep them at bay.)  Once I started walking on the prosthetic leg, my brain understood that my leg could straighten again. When I wear the prosthesis, the socket covers my stump right up to my hip and pelvic bones (where my weight rests). It feels as though my whole leg--including knee, calf and foot that aren't there--are inside a suit of armor. When I flex the thigh muscles on my stump it feels as though my knee bends or straightens. (This is really cool. For all those years, I couldn't move my knee but I can now that it's gone.)

I usually wear the prosthetic leg from the time I get up until I go to bed. I use crutches without it. I don't hop well anymore. My "good" knee is very arthritic. (Hence the knee brace in the picture.) When my leg is off, I call it leg-less lounging. My brain has gotten used to this mechanical leg that bends and straightens, comes and goes. Often I'll cut my right foot's toenails and immediately turn to my left foot that isn't there. I have a leg now that I don't.
 
I've always had an over-active and vivid dream life. I wasn't usually conscious of it in the dreams, although sometimes I dreamed I 'd been HEALED and running with two perfect legs. Now, since the amputation,  I have different versions of my leg in dreams. Sometimes I run on my old fused, bent leg (which I never could run on), and sometimes I have the prosthesis (which acts like a hinge and doesn't hold me when it bends: it's hydraulic, not computerized.) 

And sometimes in the dreams my legs are whole and perfect. Not HEALED. Just normal. My brain switches effortlessly from  being legless on crutches  to a mechanical leg to a fused leg to a normal leg in the dreams.

It doesn't matter which leg I have in the running dreams. I just run.