Thursday, March 20, 2014

Trading Up

It's been my crusade for over a decade now, and it's finally catching on. When I was doing research about the option of cutting off my foot I had very few resources to pick from. The internet was a baby and mostly full of company websites. The library had zero books on amputation or amputees. Through Amazon I found a doctor's manual, showing what an amputation surgery looks like, and exactly three books about extreme sport amputees.

But I knew I'd never be an extreme sports enthusiast. I was just a mom who wanted a more active life so I could stop missing out on my kids' lives. I needed to hear stories about people who traded in their bad limb and, in turn, received a normal life.

On January 12, 2004 I finally got rid of that twisted foot. Three months later I got my first leg. I was amazed by the energy return I felt from my left side when I walked. I'd dragged that old foot around for so many years I'd forgotten what even gait felt like.

Ten years later I still have no regrets. On the rare days that I get frustrated with some of the logistics of having this metal leg, I just think about how life would have been if I'd chosen not to amputate. Those mental images are enough to remind me that I'm in a pretty good place.

Ten years later, the perception of amputees has totally changed. When I was a kid, people didn't know much about amputees. They were generally seen as old men in wheelchairs who'd lost their legs in Vietnam. I have amputee friends who have been without their limb since childhood. They had a much tougher road than I did. I got to hide my disability in a well strapped in shoe. And then when I finally got brave enough to get rid of it, society was fascinated by the bionics I wore.

Ten years later I'm seeing references on television about how being an amputee isn't that big of a deal. On the show Modern Family, the sister is kidding the brother that his minor leg injury might mean they need to cut it off. His reply goes something like, "That's okay...then I could get one of those cool running legs!"

Ten years later I have a young, strong lifeguard kid at my work telling me about when he accidentally shot himself in the leg last year. He knew it was bad (it was a hollow point bullet) but on the ride in the ambulance he kept telling himself it would be okay if he lost his leg, because he knew he'd get a perfectly functioning artificial leg. Life would go on.

A lot has changed in ten years. But my specific crusade still has a long way to go. I'm personally aware of the hundreds (thousands) of people who are struggling with the option of elective amputation. They have severe leg or foot injuries that will never heal. They will be in pain and/or have terrible mobility for the rest of their lives. They've had dozens of surgeries to repair the damage and there is no more hope.

Choosing to just cut it off was not on the table ten years ago. But today it can be. Within six months they will be active again. Of course if they started out with two healthy legs, they will never find a prosthetic leg that is exactly like a healthy real leg. But they will find a leg that is much better than the one they've been stuck with.

And they will have a chance to get good, smooth, pain free gait back. As much as the idea might horrify their loved ones, the option is a good one.

This morning I pulled up Hulu and watched an episode of Grey's Anatomy. A friend had told me about it's story line. I never watch this show so I'm glad she gave me the heads up. In the episode, a young girl who was born with club feet has decided she's done with surgeries. She just wants to cut it off and start over. 

This was my mantra for most of my life, "Why can't we cut it off and start over?"

This episode was literally my story. At first the doctors are not ready to give up. They've been operating on her for three years and to them, cutting it off is complete failure on their part. But once they see the picture from the patient's side, they get it. They get that giving this young girl a set of prosthetic legs will open up her world.

She was never going to have straight, pain free feet. But if they let her choose the metal and plastic feet she was seeing in the media, at least she'd have a chance at a very normal life.
For years I had doctors telling me I was not a candidate for amputation.  Many of them said to me, "It is pink and it has a pulse. We don't cut off 'healthy' limbs."

They could never hear the part about my frustration of being left on the couch while my family went on adventures, or having to adjust our plans because 'mom can't walk that far'. I wanted to scream at them, 'Doesn't that count for anything?'

I was so pleased to see a mainstream show a very legitimate case about elective amputation. I have big dreams. I'll keep plugging away with my message and maybe someday those two words will be more understood. I'll keep writing posts, submitting articles, talking to doctors, and slowly I'll get the word out. Who knows where we could be, ten years from now.

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