I’ve heard it’s been pretty hot in those there parts of the country lately. :)
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.
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.
As I’m transitioning into the life of a university administrator (wow, that still feels so odd to say), I’m learning that there are some days that are just plain difficult.
Over the weekend we had a major and necessary change in our university’s courseware system. We’d run two thorough and successful tests of this change over the past two months and yet, today, we learned that some significant things had gone awry anyways. It fell on my shoulders to smooth the frustrations of staff, faculty and students, even as I was troubleshooting the system and searching for solutions. I tend to take these things personally. When people are frustrated with the software, I feel as though they are frustrated with me, or I feel as though my incompetence is revealed by the problem.
So today was hard. I spent a lot of time sighing deeply at my computer screen, wishing that I had a magic wand to make it all better.
And then I came home to my two eager (but ever so slightly teen-whiny) kids. And I was able to entice TobyJoy to eat a few small meals and take her pills (an ongoing battle in the Toby-saga). And we had a long and silly vidchat with John. And we had some tasty pizza slices from our old friend Ray. And we stopped by Trader Joe’s and saw our neighbor-manager Carolyn and picked up a few grocery staples to get us through this week.
When I checked my work email just now, I learned that the fix the IT team ran on the servers seems to have worked. My fingers are crossed that it is truly so, and that tomorrow will be an easier day for all of our users. In the meantime, I’m trying to relax a bit and pull things into perspective again.
I’m sitting in seat two of the orange and blue canoe in this picture. We’re making a turn here, fighting with a slew of other boats to get the best position (not on the outside). Turns are so exciting and scary–bumping up against other canoes and trying to get the timing just right! I love it when we get the chance to see photos that reflect some of the craziness of those moments!
Furness Abbey was one of my favorite spots that we visited on our trip. It’s much like the ruins of Glastonbury Abbey and Peel Castle that we’ve visited on past trips to the UK. I don’t know why I enjoy wandering around castle ruins so much more than real-life working castles, but I do. A ruined castle has so many more stories to tell, perhaps. Wordsworth seems to agree with me on this point, too (note: a railway runs along one side of the abbey):
WELL have yon Railway Labourers to THIS ground
Withdrawn for noontide rest. They sit, they walk
Among the Ruins, but no idle talk
Is heard; to grave demeanour all are bound;
And from one voice a Hymn with tuneful sound
Hallows once more the long-deserted Quire
And thrills the old sepulchral earth, around.
Others look up, and with fixed eyes admire
That wide-spanned arch, wondering how it was raised,
To keep, so high in air, its strength and grace:
All seem to feel the spirit of the place,
And by the general reverence God is praised:
Profane Despoilers, stand ye not reproved,
While thus these simple-hearted men are moved?
June 21, 1845.
Waking up this morning in my own bed and the exact time (even w/o an alarm clock) that I usually do each morning…just felt so right! Irvine’s humidity is so delicious. the familiar birds chirping outside are my birds,” and so forth.
We came home to something so important I’m not even sure that I can write about it cogently (and if this doesn’t make a whole lot of sense, you can chalk it up to jetlagged delusion). Two weeks ago, just as we were preparing to leave on our trip, our beloved kitty TobyJoy had a severe neurological incident. So severe that she needed round the clock care. And as our lives were completely derailed by concern for her, we knew that we were also about to leave the country on this trip to England that was so super-important to my kids–both of whom are Anglophiles, and one whose biggest wild dream is to start boarding school in Wales next year. We were faced with this horrible catch-22 situation. TobyJoy needed to be brought to a quiet controlled environment if there was any chance of her healing, because over-stimulation was causing more seizures of the kind that initially caused her brain damage, but she was in such a state that she could hardly be cared for by anyone other than a family member. Boarding in her in a kennel simply wasn’t a good option. It was super hard for us to see Toby so ill (if you’ve never met her–it’s hard to imagine a cat with a more whimsical quirky character), and we were just aching with seeing her hooked up to tubes and so deeply drugged that she wasn’t aware of her surroundings. We wondered if it woudn’t be more humane to put her to sleep than to continue her medical trauma (and at that point it wasn’t even clear that she would ever eat or drink on her own again).
So..as all of these ideas were on the table and I was trying to make decisions, a dear friend who is studying neurology, whose research is specifically on small mammals, stepped in and offered to care for Toby so we could go to England.
She (along with her partner and some other friends), developed a round-the-clock schedule for caring for Toby once she was released from the ER. She ferried Toby to vet appointments, cleaned up after numerous toileting problems, prepared a specialized diet, and administered a dizzying amount of meds every day. All while we were traipsing the British countryside. Our friend wrote daily updates, sent videos, and worked with our vet to troubleshoot problems.
When we came home last night and met Toby, we found a kitty that’s still suffering from occasional seizures, but recognized Catgirl, held her tail high as she explored, vocalized pleasure at being around our family again, and now remembers how to use the litterbox. In short, she seems happy. Certainly a bit different than before, but happy.
As I tried (and failed) to express to our friend just how much it meant to us to have her care for Toby, she simply replied, “Your family had this summer planned where you were all out pursuing your dreams…I wanted you to be able to do that…”
Anything I try to write now, can’t even touch the goodness of that gift.
We’re still enjoying our England tour, moving madly from one site/event to the next after having a few leisurely days in the Lake District.
I especially enjoyed our long train(!) tour up the Cumbrian coast to Carlisle and then back through the center of England. So many rolling hills, small plots of lands dotted with rock walls, sheep, and so so so much green. And trains. Did I mention trains?
As always, the kids are excellent travelers. They’ve survived some bad food, some awkward sleeping situations, and several long marches wearing heavy backpacks. But they aren’t complaining one whit! Their enthusiasm for this adventure is keeping me going–even when I’m exhausted and a wee bit grumpy (especially those times when I think I can hardly stand one more moment without a wireless connection)…