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When I Realized Having an Amputation Can Be OK

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When I was in college, I took a bioethics course where we read about amputee wannabes, people with body integrity identity disorder, otherwise healthy people who desired specific amputations. I couldn’t imagine someone would want to be an amputee, could want a different body than the one they had, and could think about harming themselves that way. Just over a decade later, I cannot imagine wanting a different body than the one I have now, but now I have an amputation. I no longer think being an amputee is a big bad thing. I don’t hate the body I once might have considered suffering or broken. Nothing about me feels broken; my disabilities just are.

When my body emerged from treatment, I was radically changed. Diagnosed with osteosarcoma (bone cancer), my body required an amputation to my left leg and a terrible chemotherapy regimen that sent me through early menopause, caused permanent damage to my hearing, and started the constant ringing in my ears that still screams today. I was a relatively healthy 30-year-old, then a sick and weak chemotherapy patient, and, after that, I became a disabled person.

It wasn’t my desire to become an amputee. Faced with the prospect, I did have some choice over what kind of amputee I would become: whether to have a high, above-the-knee amputation, or have a surgery called rotationplasty. Rotationplasty amputations are mostly performed on children, who are much more likely to get osteosarcoma than adults. The surgery would remove my knee and part of my femur and turn my lower leg, attaching it so that my left ankle could serve as my left knee. I chose this option.

Unlike most amputees, and other disabled people more generally, there was a scheduled date that I would become disabled, when I would go from being a person with two full legs made of meat to an amputee. I had two months of thinking on my body and what it would become, two months where I was sometimes laid up in hospital beds, a great place to consider what one might be.

I experienced many cognizant “lasts” of so many events on two legs: bald me dancing at my youngest daughter’s birthday party (because what if I never would again?), determined me on two legs with mouth sores on a hayride and chopping down the family Christmas tree, tired two-legged me watching my sisters manage the hosting of Christmas at my house, zippy me walking fast around the hospital floor with my IV pole and cracking jokes about not being able to walk around zippily during my next treatment, nervous me eating a last-breakfast-with-two-legs and kissing my kids before leaving-town-for-the-last-time-with-both-my-legs-intact.

I also had time to get a shower chair and some blood transfusions.

The weight of knowing hung around me, and around me in the people around me. I made people uncomfortable with my blunt “they are going to cut of my leg” news. Where does a conversation go from there?

I kept things as upbeat as I could. I got my daughters ready by showing them Mayo clinic videos about rotationplasty. I called prosthetists’ offices to phone interview my could-be legmakers and settled on someone with experience with this rare type of amputation (hard to find!). I made it through every day well enough, but I sobbed every night, every night where I couldn’t fall asleep because my ears rang so loudly. Snot falls so easily from one’s nose when one has no nose hair.

Being disabled is much easier than becoming disabled.

Post-rotationplasty, things were not immediately awesome. I fell and earned two extra hospital stays, ate steak while inclined with head down in a hospital bed because I needed protein and this angle was the only one that didn’t leave me screaming in pain, upped my dosage of all the pain killers, got a bonus surgery, woke up every three hours like a newborn (when I could sleep) to take pills on a schedule, made greeting cards with puns on them, and finally got clearance to resume a chemotherapy regimen that would take me through the next eight months. My mind couldn’t catch up to the orientation of my leg in space. My body had to get used to my foot being rotated and higher up; my body didn’t feel like my body anymore. It was all wrong.

My spouse got me a beautiful blue wheeled walker (with a platform to sit on!) for Valentine’s Day, which was actually great. My could-be prosthetist became my prosthetist and made a fancy new fake leg for me, but I remained on crutches because the bones in my leg were not healing quickly because of my chemo. I got gloves without fingers so my hands didn’t become any more calloused from my new forms of movement. I invested in forearm crutches, because why does anyone even use underarm crutches? (Is it because they like chafed underarms or extra wrist stress?)

Colleagues and friends brought meals, sent cat memes, and shared movie clips of a woman with a gun for a leg. I read memoirs of disabled people, Harriet McBryde Johnson, Nancy Mairs, and John Hockenberry, and met up with local disabled friends, laughing about the absurd things nondisabled people say. I learned the slogans “Nothing About Us Without Us” and “Piss on Pity”– two phrases I now use regularly. I joined an online group where a mother of someone with a rotationplasty shared with me the phrase, “Two Thumbs Up, and One Foot Backward,” perfect for how I feel about my life and my body now.

The day I managed to get out of the house with my walker and into the passenger side of my car (without falling!) remains a moment etched in my memory; it was the day I started to think that my amputation might be OK, that I would be OK as a disabled person. I would still go to lunch, pick up food, read at my kids’ school, meet up with colleagues, and do boring-average-everyday things again. People could and do stare at me a bit more, but, hey, piss on pity.

Having cancer is scary; being disabled is not. I still fear my cancer’s return, but I can’t imagine being nondisabled again. I like how my body moves in the world, whether with a newer blue walker or prosthetic leg (but never underarm crutches).

Three years later, it’s hard to imagine the body I have now, with its differences and funky rotated foot, configured any differently. All the things that seemed difficult at the start – getting around, learning how to walk, adapting to tasks, and even falling asleep – have become routine now. It’s part of my wonderful boring life, just as it seemed when I was nondisabled. I don’t hate the vessel with which I navigate the world; it suits me.

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Originally published: February 8, 2017
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