Apotemnophilia

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Ever since I was a little girl, I’ve never really felt at home in my own body. Early on, it was just the sense that there was something not right. Later, that sense of unease solidified and became clear. My body didn’t feel like my own. Even though it looked like it should, according to most definitions of ‘should,’ to me, it looked grotesque and ugly. There was just too much of it.

They used to call it apotemnophilia, but my therapist says that’s old-fashioned. “Body Integrity Identity Disorder” is what they call it now. Much more clinical, much more safe for people to talk about. Instead of saying “I want to cut off my own legs because they don’t feel like they belong on me,” I can now say “I’m a sufferer of BIID.” So much better.

Whatever it is, it makes me hate myself and this body I’m trapped in.

Can I tell you about the times when my body has let me down? About those times in my childhood when I would dig my dirty fingernails into the flesh of my thigh just to get a semblance of relief? Of how I would sit on my legs until they went numb? The pleasure of for once feeling ‘right’ would wash over me in waves until the sensation once again returned to those hateful appendages.

For most of my life, I thought I was alone in my particular brand of torment. No one could really understand this desire I had. Occasionally I would see some trashy daytime talk show where people like me were guests. The audience gawped and hooted and the host smirked incredulously, as if asking the audience “can you believe these freaks?” But I saw something different in those shows. When I looked at the faces of the people who had successfully transformed their bodies into the right shape, I saw happiness. Not even the disgust emanating from the audience could take that away from them.

I was incredibly jealous of those people, and lonely in my jealousy. No one could possibly understand what I felt; society had deemed it wrong. We’re taught from the moment of birth that our bodies are precious, temples even, and that we should do whatever we can to preserve them. We look at people with physical disabilities as if they are somehow wrong. That’s not what I see at all.

The internet was a godsend for me, and other people like me. In my adolescence I discovered newsgroups for people with apotemnophilia, and later on message boards for those with BIID (by that point the language had ‘evolved’). I was able to finally connect with other people who understood me as I had always wanted to be understood. It was as if a weight had been lifted from me, and I could finally be myself. In these groups, I wasn’t a freak or a mistake, I was accepted.

We didn’t meet in person for a long time. Most of us lived far away from one another, and many of us were too poor or too young to travel halfway across the country. We did talk, though, and formed deep friendships. We played role-playing games on those message boards, each of us disappearing for a moment into a world where our perceptions matched our bodies. In my fantasies, I was me, but without the dead meat hanging from my hips. I wheeled around town, satisfied and whole, even though parts of me were missing.

When eventually I would snap back to reality, depression would overcome me. That’s when the friendships I had developed were their most precious. We all could share in that feeling. We all could comfort one another, even though we were miles away. Those groups were how I survived this long. If not for them, well, I don’t know that I could have kept myself from doing something stupid.

Late last year, I discovered that three of the people in our group lived in my city. It was like learning I had a long-lost twin. We talked for months, growing our bond through the internet, before we opted to meet in person. It was necessary to wait, given how disingenuous some people can be online.

Grace and Howard were both near my age, and had struggled with BIID for their entire lives. Kyle was slightly older, and no longer considered himself a sufferer of BIID.

We all met up at a coffee shop downtown. I arrived first, and I knew Kyle the second I saw him. I could tell it was him: he had one arm, and the biggest smile I’d ever seen. Grace and Howard arrived a few minutes later, and we immediately got down to sharing our stories. When it came time for Kyle to share his, we all listened with rapt fascination.

“I always knew I was wrong,” he said. We nodded in understanding.

He continued. “The arm that was attached to me was not my own. It was like I knew it instinctively from childhood. It drove me crazy. Every day I’d look at it and feel hate well up inside of me. I used to cut it, little strokes to see what it was like. It didn’t help. I only wanted it gone. It was an obsession, really. All I thought about all day every day was getting rid of my arm.

“Then, one day, I’d had enough. I couldn’t stand it anymore. I had to do something. I was so keyed up and I did the only thing I could think of. I turned on the garbage disposal, and before I could talk myself out of it, shoved my arm into it.

“I passed out from the pain, I’ll admit. Thankfully my wife came home just after it happened. They got me to the hospital in time to save my life, though I was unconscious for it all. When the long-faced doctor came to tell me that the couldn’t save the arm, I nearly jumped for joy. I tried to hide it, but honestly it was the happiest day of my life.”

We stared at him in shocked envy.

“And did it make you feel better, long-term, I mean?” I asked.

“Maggie, it made me feel like I was complete. Since that day, my life has been so happy. So fulfilled. I don’t regret it for a second.”

Howard, Grace and I exchanged looks. I knew what we were all thinking: how can we do the same thing? Kyle must have understood that look, because he piped up again.

“Listen, though, happy as I am, you do not want to go about things the way I did. It’s incredibly risky, and you could easily die.”

“But what are the alternatives?” asked Grace. “I’ve been to every surgeon in the state, and no one will remove an undamaged limb.”

“It’s true even out of state,” grumbled Howard. “They don’t understand what it’s like to wake up every day in a body that isn’t your own.”

Kyle nodded. “I know, I know,” he said. He looked around the room, and leaned in, whispering. “What if I told you there is a surgeon who will do it?”

Grace laughed. “Some back-alley amputation? There’s no way anyone would do that.”

“There is, though,” said Kyle. “I know it sounds crazy, but there’s this guy, Dr. Felix, and he helps people like us. It’s his life’s goal. And he’s legit.”

I sat back in my chair, chewing on my bottom lip. If this was true, if a doctor really would do the surgery without damage to the limb, it could be a life-changer.

Kyle once again spoke up. “What would you have him do, if you could?”

“My left leg,” Howard said, not even pausing to consider.

“Both of my legs,” I replied.

“Same as Maggie,” said Grace. We exchanged glances as Kyle smiled.

“It can absolutely be done.” He pushed a business card across the table toward us.

I debated calling the number for days. We all did. In the end, we each decided that only one thing could make us happy. We all eventually called Dr. Felix. He agreed to come to town, and scheduled appointments with each of us.

The surgery would be done in my own house, as hospitals and doctors’ offices were much too dangerous. Dr. Felix was adamant about discretion; his license was on the line, after all. I agreed, and the date was set for a month out.

I spent the next few weeks in a tizzy. I bought a wheelchair and practiced maneuvering around my house, picking up or rearranging anything that got in my way. I studied post-surgery care instructions, and read up on the procedure. The days passed in agonizing slowness.

When the day of the surgery came, I felt like a weight had been lifted. I met Dr. Felix at my front door. Anticipation and excitement bubbled up inside of me, just like the Christmases of my childhood. Finally, it would all be okay.

He greeted me warmly, taking my hand in both of his.

“Maggie! How nice to meet you. I know you’re excited to get started, but I want to go over a few things with you first.”

I nodded my assent.

“You wish to have both of your legs amputated, correct? Above the knee?”

“Yes, that’s correct,” I said, barely able to contain myself.

“And you understand the ramifications of the surgery? I know this sounds stupid, but you do realize that once your legs have been removed, there is no getting them back?”

I smiled broadly at him. “Yes, Dr. Felix. I understand that perfectly.”

“Okay,” he said, “let’s get to work then.”

I waited in the kitchen while Dr. Felix prepared the bedroom. It had to be sanitized for the surgery, and I understood that it would take some time. Every second of waiting felt like an eternity. Finally, he appeared in my doorway.

“It’s time. Your room has been prepared.”

I let out a little squeak and followed the doctor to the bedroom. Crisp, clean white linens lay on my bed, and an IV drip sat next to it. I changed into a gown and lay on the sheets. The doctor made quick work of cleaning my legs and inserting the IV. I watched as he pulled a syringe from the table beside the bed, and injected its contents into the IV bag.

I felt myself relax and waited for the unconsciousness that would usher me into my new life.

It did not come.

After some seconds, I tried to move, to alert the doctor that I was still awake. I found that I could not. I was paralyzed.

“You may be wondering,” Dr. Felix said as he moved around the bed, “why it is that you are both awake and immobile. Well, that’s simple enough. I need you to be aware of what I’m doing. I need you to see the procedure unfold. Unfortunately, there will be some pain.”

I tried to force my body to move, tried to wrench myself free of the drug-induced prison I was in, but I could not. Was he really going to cut off my legs with me awake? As the thought passed through my mind, Dr. Felix propped me up slightly and positioned my head so that I was looking directly at my legs.

“I’ve been working on a treatment, you know?” He looked at me as if I could answer him, and then shrugged his shoulders.

“No one really knows what causes BIID. Some think that it’s the brain’s inability to accurately map the body. Others take a more Freudian stance on the whole thing, saying that it’s those all-important early childhood experiences. That’s, of course, complete hogwash.”

I could only stare as the doctor pulled another needle from his bag. He tapped it twice with his forefinger and then injected it into my IV.

“My theory, which I will need your help to test, is that it’s actually a...well, that’s not for me to say. Wouldn’t want to confound my research, would I? All I can tell you is this drug you’ve been given is a cure, plain and simple.”

The doctor hummed to himself as he began taking his instruments from his bag. Panic welled inside of me with each subsequent tool he produced. The scalpel, the oscillating saw, the ligature. I felt like I couldn’t breathe and wanted desperately to shut my eyes. Try as I might, however, my eyelids stayed open and unblinking.

As the doctor began to tie off my right leg above the knee, a new and unfamiliar feeling washed over me. Suddenly, and with the force of jackhammer to the gut, I did not want to lose my legs. I felt a surge of desire so strong it was overwhelming. I needed to keep my legs. They were part of me. They were my legs. Mine. I would have cried if I could, would have screamed out until my throat was raw. But I could not. I could only watch while he brought the scalpel to my skin. I could only watch as a line of bright red appeared on my thigh.

I felt the cut throughout my entire body. The pain was sharp and radiant. I can’t say whether the pain distracted from the regret or whether the regret distracted from the pain; all I know is that my mind mixed the two together until they became one in the same.

I’m not sure how deep the doctor got before I lost consciousness. That blissful escape as my brain shut down might have lasted a few moments, or might have lasted hours. I faintly recall coming to at the sound of the oscillating saw cutting into my femur before blacking out once more. When I finally awoke for good, I was lying in my homemade hospital bed. I was alone, and my legs were gone.

I screamed, both relieved and frightened that I could once again move my body. At the sound of my voice, Dr. Felix entered the room.

“What have you done to me?” I asked, angry at myself for the way my voice sounded, like a petulant child’s voice.

“I have eliminated, permanently, your BIID. You are quite welcome.”

“You took my legs!”

“Yes, well, you did request that, did you not?”

“You changed my brain. You made me want my legs, and then you took them!”

“My dear girl, don’t you see? You have been instrumental in providing a cure for this wretched disease! I “messed” nothing up, only repaired a broken neural pathway.”

I stared at him.

“Now, of course, it won’t be your name in the literature, but you’ll be there just the same. Patient 7, cured of her Body Integrity Identity Disorder.”

“But why take my legs? Why take them from me just as I want to keep them?”

“Oh, well, I do have to be rigorous, do I not? If I had given you the shot without taking your legs, you might not have come to the realization that you desired them. You might have rationalized away your newfound affection for your own body.”

“But, doesn’t that just confound your research? I mean, how do you know it was the drug and not the realization that I was losing my legs that made me want to keep them?”

He stared at me for a long time before finally speaking again.

“It’s not your place to know my methods. Your reaction upon waking told me more than any post-intervention interview could have. Now, no more talking, girl. You need your rest.”

I watched as he pulled a syringe from his pocket and injected it into the IV. He faded from my vision as I lost consciousness.

When I awoke again, Dr. Felix was gone. I was alone in my room; my wheelchair sat beside me, with a packet of post-surgery instructions in the seat. I saw that straps had been installed above my bed, presumably to allow me to move from bed to chair.

For hours I sat in my bed, alternating between bursts of crying and fits of rage. How could he have done that to me? I’m ashamed to admit how long it took for me to think of the others. Grace and Howard. They had appointments with Dr. Felix, too.

I felt along my bedside table until I could locate my phone. I turned it on and immediately called Grace. There was no answer. Neither was there an answer at Howard’s. I sat still as the realization hit me fully. We were all his test subjects. I didn’t want to think about Howard and Grace, about how they too would have felt the same fear and regret as I had.

As I sat with my thoughts, I began to feel a dull throbbing in my legs. No, in the remnants of my legs. The pain medicine was evidently wearing off. I reached for the bottle of Vicodin that the doctor had left on the nightstand, only to find that it was empty. I shook the bottle, but heard nothing.

All the while, pain began to prick the nerve endings up and down my legs. I reached down to rub the spot that hurt the most, and encountered only empty sheets. My leg was gone, but still pain pulsed through it. Phantom limb. I had read about it in my surgery preparation, but the reality shocked me still.

Alone and butchered in my room, I screamed.

It was days later before I heard from Grace. By then, I was moving around the house as I’d practiced. I was recovering physically, but mentally, I was a wreck. My legs throbbed with pain from my ankle to my hip, and no pain medication could soothe the limbs that weren’t there. They burned and pulsed, as if punishing me for ever having hated them.

Grace had fared no better. We spoke on the phone for hours, each mostly just crying into the receiver. In her desperation, she had even gone to the police. But once she told them she’d consented to the surgery, they only referred her to a psychologist.

She had also heard from Howard, she told me, and he was doing slightly better than us. He’d only lost the one leg, after all. She and I resolved to find as much information as we could on Dr. Felix. Tracking him down became our only goal.

We met up, Grace, Howard and I, a few weeks after our surgeries to exchange notes and try to find the good doctor. We had all come up with nothing.

“His office is empty,” said Grace over a steaming mug of coffee at my kitchen table. “I went by last week. No sign that anyone had been there in ages.”

“And you asked the neighbors?” Howard asked.

Grace looked irritated. “Of course I asked the neighbors! They hadn’t seen anyone that fit the doctor’s description.”

“I couldn’t find a thing about him, not in any of the medical journals. Whoever he really is, he’s not publishing his work,” I said.

“Figures,” said Grace. “I tried to track down his phone number, but it was a burner. No record of the guy anywhere. No trace of Kyle, either.”

“Goddamnit!” Howard shouted, slamming his palm on the table.

We jumped back, startled.

“It’s just…” he started, “it’s just so unfair. This was all I ever wanted, and he’s turned my dream into a living hell.”

Grace and I each reached out to Howard, holding him as he started to cry. We sat like that for what could have been hours, consoling each other through the tears. We had all gotten what we wanted, and now we’d have to live with it for the rest of our lives.