A conversation with a friend about surgical pain prompted me to resurrect this older post that never made it out of my drafts folder. It’s a rather stream-of-consciousness piece, a musing on my own relationship to pain.
“It’s kind of freaky the way you smile when you tell me these things,” he said, stopping me mid-sentence. I was telling the story of my leg infection and had just launched into the part where I was explaining the surgery. I had lifted up my left pantleg to show the scar and was explaining the debriding of the wound.
I was silent for a moment, rehearsing the last few moments in an attempt to find that spot in my story where I’d left off. I dropped my pantleg.
I’d chosen him as my therapist purposefully. A Jew (not a Mormon or a Christian). A musician. One of the few people whose library could rival mine, books stacked in piles on cinderblock shelves. Older than my father and nothing at all like him, with curly hair going every which direction. So I sat on his couch with my legs crossed, not even sure why I was there except that it seemed I had work to do. A black fog inside my head. Fragility. Fatigue. A desire to put some things behind me. And to figure some things out. He had a swimming pool in his front courtyard and yet he confessed to me during our first visit that he didn’t even know how to swim.
I felt my smile widen on my face again and wondered when it would be appropriate to continue my tale. I wasn’t sure if I was supposed to continue, though. Maybe we were supposed to stop here and talk about something else. Something deep. I waited for him to signal me, to tell me what was supposed to happen now.
“Why are you still smiliing?” he asked. I didn’t know. The smile went with the story. Hand-in-hand.
*
I curled my body into a tight ball, fitted into the hollow of John’s body as we lay next to each other in bed, the layers of comforters over my head. It was one of those cold nights. When no amount of clothing would keep me warm. He took my icy fist in his and tried to spread out the fingers to alternate with his own. But my instinct to ball my fingers made me resist. As I shivered he pulled at my various layers of clothing and uncovered the stump of my right leg, knowing it would be the coldest part. He clasped the soft tissue in his warm hands and held firmly, passing heat from his body to mine, so I could sleep.
*
“Jana’s complaining of pain again,” I read at the top of the next page as I turned the microfilm knob. I recognized my nurse Penny’s handwriting. Larger and loopier than most of the other writing on the records in the medical files that I was perusing in the microforms room of the Children’s Hospital. After reading page after page I realized how much I liked when the nurses used my name: Jana slept all afternoon, Jana seems in good spirits today, Jana took a bath. Jana’s friends from church came to visit. Jana’s in pain again. So much better than The patient slept all afternoon, The patient took a wheelchair ride outside. The patient says she wants more demerol.
There was one common refrain in nearly every entry: Jana’s in pain. Jana’s in pain again. The patient is complaining of pain.
I recalled the various landmark events of that time: the surgeries, the emergencies, the bloodcell counts, the benchmarks, the dirty scans, the clean scans. And that horrid wallpaper. The ridiculous pastel pattern of abstract llama-creatures with knees slightly bent, marching in static rows across the walls. I remember grabbing the cold metal railings of the bed and staring at that wallpaper. Screaming, as the needles go in.
When I received this ritual, it didn’t occur to me to remove my artificial limb. Most likely that was due to the fact that I wouldn’t have been ambulatory without it, and also because I was not sure exactly what the “rules” were about such things and no one clarified them for me (for the most part, these rituals are not explained beforehand, due to their sacred nature). Since then I’ve learned that women with breast prosthetics can choose to wear them during the ritual. I’ve never heard any definitive word on the wearing of artificial limbs, but I suspect that it is allowable.
Because of the staging of this ritual, it was not evident to the recipients that I was wearing an artificial leg until it was nearly completed, when the officiant bent down in front of me to bless my legs (while I was seated on a throne-chair). After undergoing the washing and anointing a few times, I learned to catch the gaze of the officiant as she reached out to touch my not-real leg. There was often a pause. Usually a knowing glance was exchanged between us as she continued on with the script of the ritual (were she to speak words other than those prescribed, the ritual would be deemed ineffective and would have to be repeated according the prescribed pattern).
In the moments after the ritual, as we waited for me to be escorted by an officiant to the next step in the process, there was often a moment for some whispered conversation. Usually the officiant would mention something about my leg, asking how did I lose it, or commenting that my prosthesis looked very lifelike (which was back in the day before I chose to let my robotic innards hang out).
Those ritual moments, are, for me, emblematic of how I view my relationship to my prosthetic leg. It seems as much a part of me as my tongue, or my eyes, or my liver. That I take it off at night and lay it next to my bed, doesn’t make it any less “me.” That it is a thing of metal and plastic and vinyl, doesn’t make it any less familiar than my other leg and foot. That it sometimes makes an audible whirring adjustment sound when I walk through quiet spaces, is no different than the familiar creaks of my organic joints. That its parts are fabricated from components that come from all over the globe, and are assembled by workers in Germany and are fitted to my body by men in Orange County, doesn’t make it any less me. Perhaps what makes it feel the most ‘foreign’ is the attention that my leg garners as I move through public space. It is the reaction of others that reminds me that I am different.
I suppose that being a cyborg comes “naturally” to me. I couldn’t live my life normally without the microprocessor in my knee, or the metal crutches that I use when I’m not wearing my prosthetic. These tools are so much a part of my life that they are my life. They are familiar in the same way that my hands are on my keyboard. I don’t think each time I type that I am sending letters from my fingertips to the screen and out to you. I just do it. Like that, I just walk. And stand. And move. The way that I do.
*Note: recently there were some changes to this ritual that include less physical interaction between officiant and recipient, and also how much clothing is removed beforehand. I am discussing how it worked back in 1992, when I first participated.