You wake up every morning and it's leaning next to your bed. Today, you're fourteen and your supra-condylar below-the-knee exo-skeletal patella tendon-bearing right leg prosthesis is two. You pick up your leg so you can put it on and you get a whiff of your "eau de funk." It's like a sweat sock that's been in the bottom of the dirty clothes pile for a month. It should have odor trails like a Pepé Le Pew cartoon.
Exo-skeletal means that the metal shaft and foot is encased by either a hard or soft outside cover. The solid covering of your leg is a brown fiberglass shell that does not look like a real leg at all. The large calf area is made to match the shape of your overdeveloped "good leg." It has a plastic, shiny coating, with scratches. There are knife holes in varying sizes from friends stabbing your leg to scare or amuse strangers. Your foot is a hunk of carved beige rubber shaped like a surfboard.
You know the phrase congenital defect, but you dwell on the latter word as you have understood for a long time that your deformity came "from birth." Your four brothers and sisters and your parents have told you that your birth was an "accident" because you were not "planned," and that further complicates the phrase.
Your leg is made at Shriners Hospital for Crippled Children where you have been a patient since you were a year old. From East Falmouth, the hospital is a three-hour drive away in Springfield, Massachusetts. You have already had two surgeries and you know there will be more. You used to have toes too, but you never had a foot and the toes just looked like different sized lumps on the distal end of your bony stump. Those toes, along with the bulbous fibula head, were removed along with about two inches of your tibia so you could have a leg that fit properly.
You are humbled at Shriners Hospital because you see other kids missing parts of all four limbs. There is no wallowing in self pity. Everything at Shriners is free. Yes, free, and you will never know how much it all costs. You thank them by walking, riding a bike, and running with reckless abandon.
You have already lived in this leg a year longer than you will live in this house on Winchester Drive. Your bedroom will forever be remembered as the one your drunken dad came into that night and took a piss in the corner. You cleaned it up. The sweaty leg and the urine brought you to your knees in tears.
After you wake in the morning, you put on a few five-ply Knit Rite wool socks. You insert your stump into a liner made of quarter-inch thick Pelite, a foam rubber material. It acts as a buffer between your leg and the hard plastic/fiberglass socket that the liner fits into. Both the socket and the liner are smooth and contour to the shape of your stump, except for the indent or bar that sticks out below your knee that bears your body weight on the patella tendon. The Pelite liner has thick wedges on the left and right sides that rest over the condyles of the femur, hence the name supra-condylar. If you grab the sides of your leg beside your knee, those are the condyles of your femur. You then insert your stump with the Pelite liner into the socket of the prosthesis, and the supra-condylar wedges lock you into the socket to keep the prosthesis on your stump.
The leg grabs onto the inner condyle so tight the bone pain from the day before returns. The two-inch-wide leather Y strap attaches to the outside of the socket, and you wrap it around your waist over your underwear, which helps reduce the beltline marks on your skin. The strap is there for added suspension because, as you go through the day, your stump shrinks and swells, and friction is the worst thing for any prosthesis wearer because it leads to sores. The strap is also your woobie because you have always had one and it makes you feel secure.
* * *
It was the early eighties and years before condoms would be available at our high school (one of the first to dispense rubbers from vending machines in the bathrooms). Kathy and I had similar hairdos. My brown straight hair parted in the middle and dangled at the top of my shoulders, covering what I thought were my enormous ears. I looked like Scooby's best friend Shaggy. The ends of Kathy's hair, which was golden and more yellow than blond, curled into the middle of her back. I had a long face with a smirk on it. She had a Bugs Bunny smile. We had moles above our lips in mirror images of one another. It was springtime; she was a sophomore and I was a freshman.
Kathy's dad owned a laundromat and dry cleaning store, and he had a few video games near the dry cleaning pickup and drop off counter. On weekdays she used to watch me play video games for a while, and then we'd go into the little back room and explore each other over and under our fully clothed bodies. She seemed to enjoy it when I used my fingers inside her, but she also liked it when I rubbed that bump at the top of her opening. Like the fire button on my favorite video game, Defender, I kept pressing it faster to go further in the game and with Kathy.
When her parents went away in April, we cut class and had a party at her house. We drank Tuborg beer and she smoked cigarettes in the kitchen. Then we smoked some of her brother's home-grown with him. This latest batch was offered from a large wooden salad bowl. It looked more like spinach, wet, leafy and dark green, not like anything we ever paid for or saw in Cheech and Chong movies.
Their house was a mess. Dirty dishes, stuff piled in corners. Her bedroom was the same way, but the room was dark and smelled like Kathy: a blend of sweat, Johnson's baby powder and Prell shampoo.
She pushed some dirty clothes from the twin bed onto the floor and we sat down and started kissing. She reached inside my underwear and gave me a hand job. I fidgeted with the bra strap on her back until she eventually undid it for me. Kathy took off the bra through her shirt sleeves and we took off our pants and our tighty-whities. I pulled her shirt up over her breasts; I don't remember how I got my underwear off because I never undid my suspension strap.
We could not lie flat on the bed because of all the stuff, so Kathy was in kind of a curled caterpillar position when I moved on top of her. We tried for a while with my prosthesis on, but the metal buckle was digging into her belly. I sensed her discomfort, but I'd realize later it was from my inability to perform and not from the buckle.
"Why don't you take it off?" she whispered.
"Are you sure?" I did not want to. We had gotten to this point with most of our clothing still on because we were self-conscious about our bodies. During our sneaky sexual adventures our hands had touched all the intimate areas, but until today we had never laid eyes on those places. She had never seen me with my leg off and I had never glimpsed the places my hands knew so well. I pressed down on the toe of the leg with my left foot to hold it down as I pulled my stump out. With a little more foreplay we repositioned ourselves. I was on top of her and my hardness suddenly softened. I remember Kathy pulling my hips into hers, still not willing to give up. I wished I had one of those strap-on models like I'd seen in a catalogue. I was used to putting on prosthetics and would have gladly strapped it on just to see the passionate colors of pleasure light up Kathy's face.
Days later, a group of us were walking together to the cleaners to play video games. Kathy's and my relationship was already different — tense and distant — and it was not going to improve. We made some mean comments to each other and it escalated into personal attacks along the way. I don't remember what she said, but my vicious response was the product of some heightened teen pack mentality.
"You're a fuckin' cunt," I yelled, knowing the word would cut deeply. It still sits on the pile of past regrets.
"You can't get it up!" she shouted to me, her face an angry flame. "You're a limp dick!" She yelled from the other side of the street so all our friends and the people in the cars stopped at the traffic light on Route 28 could hear. With my friend Andy beside me I stood there stunned, and hurt. She walked in the other direction with her friend and her brother Chris.
Kathy and I never spoke to each other again. We lived less than two miles from each other for nearly two decades
Still angry and embarrassed by what Kathy said, I stopped with Andy at a flowering bush with yellow jackets flying around it. We loved to capture the bees in the cups of our hands. Today, I shook them up in my hands for a few seconds and felt them bounce off my palms and fingers, daring them to sting. Some days we would fling our hands open in a throwing motion and the bees would fly away buzzing mad. Sometimes they would drop toward the ground in silent dizziness and then restart their buzzing engines before ever hitting the ground. I opened my hands and the bee flew away in a spiral up into the trees.
The bees always lived and I never got stung.
* * *
You look at the relic of a leg leaning on the wall. You just turned sixteen and your exo-skeletal below-knee joints and corset patella tendon-bearing prosthesis has been around since the Civil War. J.C. Hanger opened the first prosthetic leg business in the United States in 1861 for Civil War veterans and your late 20th century version could have passed as his demo model.
You live two houses away from Winchester Drive on Edgewater Drive West, but your home is far from the water's edge. Your bedroom is remembered for the white walls stained yellow by chain-smoking parents. You are in the smallest bedroom because you had to move when your two sisters had kids and the four of them had nowhere else to go. Seven people in a three-bedroom ranch with one bathroom. It is the only time you have nightmares. After major surgery to remove a pie-shaped wedge from your tibia, the same dream of being eaten limb by limb by a tiger haunts you for many nights. It could be the drugs for the pain, but you know it's rooted deep in your psyche and will manifest itself in other ways once the pain is gone.
You put on a wool sock, and slide the stump through the leather brace with the corset untied until it rests in the Pelite liner that also stays in the socket. You pull the laces of the corset, which are made out of parachute cord, and then tie it at the top of your thigh just under condyles at the top of the femur. This corset bears all your weight and is supported by joints, two large metal hinges on the sides of the corset that attach to the lower part of the leg socket. The leg is held on by a Y-shaped suspension strap because without it the leg would slide off, no matter how tight you tied the corset. You have no lateral knee movement at all and the hinges of the joints shred every pair of pants you own. You never have any sores on your stump and the leg is very secure.
The problem with the old joints and corset is that your leg muscles atrophy from not being used and your puny-sized thigh gets even smaller. Occasionally, your mouth dries out and you hyperventilate in pain when your nut gets pinched between the corset and your thigh. The new Seattle foot actually looks real with veins and it even has five little rubber toes on the end. This energy-storing foot is made of a new plastic spring developed by DuPont, literally giving you a spring in your step.
Cindy had long, light-brown hair and the personality of a tiger cub — playful, mischievous and constantly moving. She had an oval face with pouty lips that I thought were the result of the braces on her teeth. She had carefree blue eyes. She was a new wave and pop freshman and I was a serious head banging senior tuning out to Metallica, Dio, and Motley Crue. We had nothing in common except that I was attracted to her slim body.
It was winter, and we were at my sister's apartment downtown on King Street. Her place was an old farmhouse chopped up and added onto so that it now contained four apartments. By late afternoon, there were flurries flying outside the two east-facing windows above my sister's double bed. Cindy and I were holding each other and kissing while taking off articles of clothing. Suddenly, there was nothing left to take off.
"Are you warm enough?" I asked. Cindy nodded and as our eyes met, we laughed, nervously. She lay down on top of the flowered bedspread.
Time moves a lot faster when you're naked. I wanted to slow time down to study her body with all my senses. Cindy was a still life work of art; unmoving, with arms at her sides and legs together. Her limbs were long and smooth. I remember feeling her skin, quivering sometimes at my touch. She got goose bumps. I kissed her all over. I licked the fuzz below her navel, and it tasted salty. She smelled like fresh baked bread and I tasted a girl for the first time. With her hips rising up to meet my lips, I was pleased that she was pleased.
"I'm ready," she whispered. Damn! I told myself I would take my leg off this time and I got so caught up in our intimacy that I had forgotten. Unstrap. Unlace. De-leg.
"I'm ready," she whispered over and over into my ear. I was not. And as I lay down beside her, ashamed to even look in her direction, I questioned if I ever would be. In silence, I put my underwear on and Cindy got dressed and left.
Cindy and I drifted apart, and later that year she moved away. Cindy was willing to accept me for what I was and I didn't understand that. I wasn't willing to accept me for who I was. She called my mother's house a few years later asking for me, but by then I was already engaged to Susan.
* * *
I've just turned forty and the latest leg, an endo-skeletal below-knee silicone suction socket (3-S) prosthesis, leans against my wife Susan's grandmother's easy chair. There is no cover on this leg; it's endo-skeletal and has a carbon fiber post. The post is attached with titanium hardware to the carbon fiber socket on one end and the foot on the other. In this case, it's a Freedom Innovations Renegade foot with Z-shock technology. Our bedroom has the bureaus that match the easy chair, and Grandma Samry's rocking chair in the corner.
First I apply the petroleum-based cream to lubricate my stump, now called the residual limb for political correctness. Then I put on a silicone gel liner, which covers my kneecap. A precursor of the 3-S silicone gel system came out in the late eighties but the technology would not take off commercially until 10 years later. I put on a nylon sock so the gel liner does not stick to the carbon fiber. I stand up and my weight drops into the socket, making farting noises as the excess air escapes out the top of the gel liner, which feels like hard Jell-O. As I put the leg on, I laugh at the old adage about everyone putting on their pants one leg at a time. I grab the Flexisport polyethylene suspension sleeve, which is a rubber material inside that grips onto the carbon fiber socket. I roll the Flexisport sleeve over my thigh and the outside feels like a wetsuit. This 3-S system is the best socket liner system, hands down. Then I put my pants on. I only change one sock every day, unless the sock color changes. My right sock never gets dirty.
I feel guilty about the fact that the reason the technology is improving, like my new foot, is because of Improvised Explosive Devices. IEDs are separating limbs from soldiers in Iraq and sending them back home to their families "broken." The soldiers I've met are actually demanding better technology so they can maintain their active lifestyles. I've never demanded anything. I try not to take the ability to walk for granted and appreciate every step I have taken in a prosthesis.
After a typical day of wearing this thing for sixteen hours, I sit down on the edge of the bed, roll down the suspension sleeve onto the socket, lift my stump out of the socket, and push my fingers into the gel liner to "pop" myself out of it.
I've been putting on a leg when I wake up for about 14,000 days now. I have no idea how many consecutive days I have woken up and put my leg on. I'm too superstitious to even think about a streak. Sometimes you take it for granted, like putting on your socks. Most times it is a painful reminder that I'm incomplete, in pain on every heel strike, and totally dependent on "durable medical equipment" just to take a step. I lean the leg on the chair, which has been a stand for the everyday leg, and the spare, for as long as I can remember.
It's October, 2007 and I'm crutching out of the bathroom after getting ready for bed.
"I can't believe you just passed him without petting him. That's why he jumps up there," Sue says to me in her "you should feel guilty" tone. As I look at Sue, she cracks a mischievous smile and her brown eyes brighten. I turn to Jake, our indoor, tubby tiger cat who is crouched on the edge of the bathtub. Jake has figured out that I can't bend over to pet him when I'm limbless and on crutches, so he has learned to jump up and sit on the side of the tub when I walk by.
"Sorry, buddy," I apologize and rub him under his chin and along his jaw line. I purr and so does he. Outside the bathroom, he runs in fear from the crutches.
Truth is, I'm afraid of the damn crutches too. One fall and my hip could be broken faster than you can say "I've fallen and I can't get up." Much of this is due to "overuse syndrome," which means that my healthy side ages much faster because I am subconsciously overusing it. I used to be able to wield a glass of milk, a plate of food, utensils, and a napkin while crutching anywhere in my home. Too risky now that my body is actually sixty years old in some places. Winning all those hopping races on field day apparently takes its toll. Also gone are the days of standing on one leg to take a shower.
Tonight, I turn out the light, sit on the bed and lean the crutches on the headboard. I lie down beside Sue in her t-shirt and underwear with her knees up in the air. She moves her fingers across the bumps and the deep red line left behind by the suspension sleeve. I wrap my stump around the top of her upper thigh and begin running my fingers through her hair.
Alan Samry is a senior in the Adult Degree Program at the University of South Alabama. He is majoring in interdisciplinary studies and is currently working on a project about Henry Highland Garnet.