Life is funny.
This is what I’m thinking as I’m watching the Asian toddler scoot around the room on her knees because half her left leg is gone.
Not funny ha-ha, but funny unexpected. Funny perfect because I gave up trying to make things like I thought they should be, and I wound up here.
A young black-and-white Australian shepherd fixates on the pink fabric frisbee on the floor as the Asian girl zips past on her kneecaps. His only disturbance is her ignoring his deep psychological need for her to throw the toy.
Her sister, maybe four or five years old, wears a prosthetic right leg designed to look exactly like a girl’s leg, flesh-toned to match her skin color, and it’s so realistic I don’t realize it’s fake until she runs over to where I’m sitting to wonder who wants to play Barbies?
In the middle of the room, a woman of 60-ish works her hands along a waist-high set of chrome parallel bars, testing out a new C-leg, while another woman, about that same age with a similar leg affixed to her right thigh, sits on the edge of her seat several feet away, watching the progress with rapt attention.
Black ergonomic plastic chairs line either side of the giant open room, and there is a demo skeleton in the center relaxing next to an HD flat screen television, where I just watched a segment of Dancing with the Stars featuring a pretty double amputee named Amy in a contemporary duet performing on a set of glossy black prosthetic legs with modified prosthetic swimming feet to enable her to dance on her toes. The guy who owns this place designed her legs. His name is Stan.
Later, we will all eat cheesecake, and I will see my first anti-gravity treadmill.
Of course, I’m in Orlando.
I got here because I applied for a job teaching ecology to fifth graders but ended up getting hired to write a book with the founder of the school. “Here” is an orthotic and prosthetic clinic tucked on a side street in Orlando, several miles from the glut of theme parks selling fantasy to Americans and international tourists. The juxtaposition of sitting in a room full of amputees only miles from Disneyworld and the like fills me with an unexplained and maybe unjustifiable sense of irony. The reality of the human experience has never been as visually represented to me as it is by looking at people who are missing body parts.
I’m here with Dana, who is the founder of the science school who asked me if I would help her write her life story. Dana dreams, then she sets goals, then she finds ways to achieve those goals. Dana is an AK, an above-the-knee amputee, thanks to a decade-long battle with desmoid cancer (a rare cancer of connective tissue), and she is a local hero because the humanitarian education work she does to increase science literacy for this part of Florida. She has even had a day named after her.
She and I are cut of the same cloth, personality and outlook-wise, separated in age by only a few months, so we had an instant friendship. Since our first conversation, we’ve balanced our relationship somewhere between collaborators, sisters, philosophers, and girl friends, and it’s one of those situations that feels a lot like fate.
It’s last Tuesday, and Dana and I are in her orthotics clinic for adjustments to her C-leg, or “computer leg.” Dana wants to train for a marathon. Which means that Dana is going to run a marathon. Her cancer is back, though, and it’s causing swelling in her stump, so we’re here to get a new liner and socket. We’re also asking Stan about a new running leg, and I am learning all kinds of fascinating things about the world of orthotics and prosthetics, and Stan is famous in this field, which is why Amy from Dancing with the Stars came to him specifically to invent her a pair of camera-friendly dancing legs.
Like me, Stan is still 100% biological, and he runs this company with his dad, who is in his 70s and spooling a fishing reel in the back workshop, where I am delighted to discover bins of fake feet, sorted according to size, and the machines used to fabricate custom liners, sockets, and silicone. The workshop smells like epoxy and power tools. It’s sole purpose is to make prosthetic legs perfectly suited for the specific human. It’s one of the coolest production set-ups I’ve ever seen.
We talk about AKs and BKs (below-the-knee), and the two Australian shepherds belong to Stan and hang out at the clinic all day. Dogs are welcome to come to the clinic with their people, so the day is filled with children and dogs and people making riveting remarks like “what kind of knee do you have?” and “I’ve been an amputee 40 years. My first leg was wood and I had to ask them to carve me an ankle and toes in the foot.”
There is a sense of community here and not one of disabled or handicapped people. Dana relaxes here, an amputee among amputees. The stress of life leaves her face and she smiles to see the 60ish year old woman leave the comfort of the chrome parallel bars and walk around the room on her own, steady on her leg.
Today is the mother of the Asian girls’ birthday, and the clinic’s liaison, a flirty, handsome BK who looks like he played rugby in college, arrives with a bag from cheesecake factory.
“Motorcycle,” Dana says. I’ve learned that the circumstances leading up to the amputations are usually summed up in a word. Cancer. Lawnmower. Polio. Meningitis.
I wonder what that would extend to for the rest of us? Lover. Alcoholism. Divorce. Depression.
Nobody gets out of this ride intact. For some of us, we’re forced to leave behind our homes. We lose parts of our minds, we sacrifice pieces of our dreams, we cut off whole sections of our belief systems, we lose lovers and family members, our egos–if we’re lucky–take massive, crippling blows. We lose parts of ourselves. That is life.
I am in awe of those of us who must experience it literally, in front of everyone, as they adjust to their different selves. I’m 100% biological still, the minority in this clinic, and the fellowship that exists here reminds me a lot of being around a bunch of recovering alcoholics, like me, all of us, too, finding comfort in each other’s shared experience of fear and loss, then the shared condition of recovery and adjustment. In this clinic, I’m reminded of why I love life so much, why I love people. I love people who have taken major hits and losses and find ways to triumph in the unnoticed wash of daily living. I love their stories and their implements, their tools, and their courageous trudge through pain in all its destructive, instructive force. I really like people who don’t pretend life is pretty and clean.
I really like people who are honest about the parts they lost. I like people who want to heal. And I especially like people who emerge in their new shape still looking for beauty–people who laugh, people who still believe in the magic of the mystery of life. Dana is like this, full of pain and hope and cynicism and wonder.
We suit up Dana for the anti-gravity treadmill. She zips herself into it so the lower part can fill with air like a transparent inflatable. She can’t fall. I am eating cheesecake and fumbling with the GoPro. We’re documenting this because it’s important, and it’s fun, and it’s the kind of thing you do when you love someone and you’re writing a book about their real business of living.
It’s not every day that you get to be there to witness someone learning to run again.
night night beloveds. To when you let yourself learn to run again.