Some of us feel our bodies are strongly identified with our selves and that our bodily feelings of presence are stable and predictable. These people are probably young and healthy; as we age, lose limbs, lose abilities, and generally transform into different versions of ourselves, we may find new correlations between self and body. Thoughts like “Ow, I never noticed that muscle before,” or “Was that bump always there?” are the kind of subtle reminders that the map of the body may not be as stable as we once felt it was.

In my case, having just acquired a major new body part that was crafted, origami-like, out of previous body parts, I’m noticing some startling sensations related to the maps of my self and, perhaps more importantly, the legends of those maps that are beginning to feel outdated and desperately in need of a cartographer to re-chart everything.

Reduce, Reuse, Recycle
You see, I am a perfect example of an ecologically-friendly cyborg, my new parts having been fashioned out of old ones, and thus I think it’s fair to say I reduced, reused, and recycled in the process (maybe I should use passive voice and say “I was reduced, reused, and recycled”). I didn’t come up with the origami metaphor; that belongs to a woman who was interning with Dr. Bowers from Chicago and who asked my permission to observe the operation. She reported that it was utterly amazing how all the old parts were shaped, reorganized, folded, and ultimately reassembled “like an intricate origami.” She said that unless you knew how it was going to turn out, it all looked like a terrific mess on a craft table. But to the surgeon, having performed hundreds of these procedures, the mappings must be nigh intuitive, floating above and on the skin like a paint-by-numbers project.

But the point of this blog post isn’t to marvel at the artistry of the surgeon or the cartographer’s skill at remapping, but rather to relate what it’s like to actually be the map, the origami itself, and to grapple with what strikes me as a conflict of two mapping systems existing simultaneously in my mind.

New and Phantom Feelings
Some of my nerves have worked just fine since surgery and some of them haven’t, but are beginning to reconnect in jolting ways. The ones that have always worked seem to me to remain mapped to my old body so that if I feel an itch or a pain, my mind immediately recognizes it as belonging to a certain spot on my body — there’s no interpretation needed because this mapping is so old and (seemingly) so stable that I “know” where the itch is coming from. But the landscape has changed, even if the map hasn’t, so that itch is no longer where my mind thinks it is. Where is it? Who knows? I don’t have a current map so it could be anywhere. Exploring can sometimes help, but not always, as the intricate folding of an origami swan could move an ink dot into un-findable places, maybe three folds underneath a wing, if you can picture it. These phantom pains are funny, mostly, because they initiate a guessing game in my mind, one that involves identifying the spot on the old landscape, then trying to picture just where that nerve might reside these days.

New feelings are different, or at least they seem so to me. Maybe when nerves are cut, and as they seek to reconnect, the map is erased, like a computer’s RAM that resets when you lose power. Whatever the reason, these new pains, often shooting or stabbing, come from who-knows-where, and are thus already mysterious, but also belong nowhere on the old map, and are thus doubly-mysterious because there is no cartographic system on which to locate them. Unlike the phantom pains, which are amusing, these new pains of re-connecting nerves are surprising, daunting, and a bit frightening. Why frightening? I think their newness, their randomness of appearance, and the intensity of the sudden stabbing make these new pains feel alien, unpredictable, maybe even dangerous to my primitive mind. They lurk like strangers in my corporeal shadows and jump out like the bad guy in slasher movies, just when you’ve relaxed and are enjoying your popcorn.

I suspect these feelings are well-documented somewhere — maybe in the Mind literature of philosophy, something my friend Michele could elucidate, or maybe in the literature of prosthetics and what it means to be dis- or super-abled, as my friend Amanda could no doubt clarify. Maybe these are typical feelings for everyone who undergoes various life traumas or evolutions and are rebuilt, better and faster with modern technology like the Six Million Dollar Man, and thus we’re all joined in a common post-human existence. The relationship of the body to the mind raises all sorts of ontological and epistemological questions, certainly more than I have a right to grapple with in such a small blog post. Maybe my individual experience can help move the inquiry forward a baby step, either for post-humanists generally or merely for other transsexuals more narrowly.

Maps? Legends? Both? Neither?

Thinking of REM’s song “Maps and Legends,” and the wonderful line, “Maybe these maps and legends have been misunderstood,” I picture myself studying a map of the United States printed in the 50’s, and being puzzled when there are no freeway cloverleafs where I can plainly see them approaching in my windshield. With competing maps existing in our minds (youth vs. age, pre-surgery vs. post-surgery, pre-cancer vs. post-cancer, or whatever transformations we experience in the course of our lives), it’s not surprising that we can have these moments of mapping confusion (or revelation) between what we “know” to be real and what the abstractions of maps, GPS’s, timetables, and other artifacts of modern existence tell us is real. I don’t think these moments are a case of either the maps or legends being misunderstood, but merely out of synch or out of time. How we re-synch may be a matter of patience, or maybe it’s acceptable to learn to enjoy the disconnection as an integral part of living a complex life.

An integral part of the Trinidad GRS journey is Carol Cometto’s Morning After House — it’s officially a place to recover for a couple of days after surgery until you leave Trinidad, but in reality it’s a key part of mental and physical wellbeing and establishing and maintaining a culture around this amazing experience.

I’m writing separate blog entries about the people I met at the MAH, but suffice to say that their presence — made possible by the guest house — was absolutely crucial for our positive feelings about GRS in Trinidad.

Trinidad Sign

Trinidad Sign

Nestled just below the Trinidad sign, the MAH is a big, sprawling house with approximately 3 apartments with perhaps 6 bedrooms and a variety of common rooms, and it’s in these common spaces that the guests tell stories about how they got here, what surgery was like, what pains they’re having, and what their situation is like back home. You can imagine that such a gathering is nothing like your average group of hotel guests out on the highway Motel 6, and that’s obviously because they’re not here simply to get a night’s rest, but rather because they’re all on a really big journey that takes similar paths through their individual lives to bring them to this point.

Carol
The guest house runs on high octane goodwill provided by Carol Cometto, an italian dynamo who has decorated the house to reflect her sensibilities. She zips around town in a little blue jeep with a New York Yankees spare tire cover on the back with a gusto that’s palpable, waving to her lifelong neighbors, gesturing a variety of gestures to passersby, and generally racing around town to get her business done. When she’s at the MAH, she’s watering plants, checking on guests, orienting new guests, saying farewell to departing guests, showing off her yard-sale acquisitions that make her decor jump to life. She’s your friend and hostess, and she makes you feel at home.

When we arrived, Mary Jo and I stayed downstairs for 1 or 2 days, then moved upstairs, and this is one of the logistical issues Carol spends her time figuring out — how to keep families and friends together while also shifting people around while the patient is in the hospital for 4 days, then minimizing the fatigue when someone returns from the hospital. I suppose some could see this juggling as a hassle, but we found it to be a pleasant experience that put us into a community of other travelers with similar issues.

I have read accounts of GRS in Trinidad that argue one should save money and avoid the MAH as much as possible, but I feel strongly that this would be a short-sighted approach to your Trinidad visit. Sure, you might save a few hundred dollars, but you would lose incredible benefits of getting to see others pursuing the same course as you. Instead of staying in a hotel on the highway before surgery and moving back to that hotel after your 2 free days at the Morning After House, I think you should spend your entire trip to Trinidad at the MAH.

When you arrive, for example, you’re dipping your toes into a stream of other visitors, from those who arrived yesterday and are awaiting surgery to those who have returned from surgery and are preparing to leave. You’ve got a chance to learn from others, to allay your fears, and then, when you return from the hospital, to be a resource for others who have just arrived. The MAH is also a place for spouses and friends to channel their energy and give voice to their fears and expectations.

bricksSymbolic of this stream, this journey, is a very cool idea Carol encourages — while you’re sitting around recovering, you paint a brick taken from the old Trinidad city streets — these bricks are quite thick and have raised “TRINIDAD” lettering on the top. When you’ve painted your brick with a message, a simple color, a collage, or whatever, Carol shellacs it and places it into a wall-walkway, where everyone who follows in your footsteps can see the previous steps taken. I loved looking at the bricks and wished Carol had implemented the idea sooner. Sure, she’s got a map with pins in it and a book of thoughts and a photo album, but this brick walkway is a tangible trace of the steps taken in the Morning After House.

Upon reflection, it seems to me that the Morning After House isn’t so much a guest house; it’s an engine of knowledge exchange. We might think of the MAH in light of the Japanese concept of ba, or “place” or “sphere” in japanese. Ba is essentially a shared space that serves as a foundation for knowledge creation, one that is often defined by a network of interactions. the concept of ba unifies the physical spaces, virtual spaces, and mental spaces involved in knowledge creation.

JoyceCarol

The knowledge created and shared at Morning After House? Nothing less than the experience and the culture around GRS. So if, for some reason, you can’t stay at MAH, I think you ought to go by and hang out as much as possible — because the MAH has ba in spades.

An awfully odd day, this, one that marks a big transition from being a medicalized patient to becoming a fairly normal person. Today was the day to remove all my packing and my catheter, so I slept a bit fitfully, eager to finally get rid of the catheter, which has been causing me some trouble in sleeping.

I woke early and took a wonderful shower — wonderful, that is, until about 4 ft of my packing fell out, plop on the shower floor as if I had given birth to a tiny mummy. I knew from my instructions that a little packing falling out was no big deal and that all I needed to do was cut it off. However, being naked in the shower room at 6:15 did not lend itself to much of a search beyond poking my hands into the nearby cabinet, a search that was fruitless. I called out to Mary Jo, who, dozing, asked what I needed. Scissors for my packing, I yelled across the expanse of the upstairs apartment. She ran around, looking in every drawer upstairs to no avail, then rummaged around downstairs, eventually returning with a kitchen knife, a utility knife, and some wire pliers, the best she could do. “Who doesn’t keep scissors?” she kept complaining. The utility knife wouldn’t catch across the fibers of the roughly half-inch ribbon, and it was a bit freaky seeing Mary Jo holding a razorsharp knife so close to me. She hit paydirt with the wire pliers, which snipped the packing neatly. “You get to clean up the shower,” she grumbled. “This is the grossest thing I’ve done in a long time.”

We left early for my 11:00 meeting with Phyllis, the nurse in charge of “vagina boot camp,” as I have come to see it. Mary Jo and I went to a coffee and knickknack shop for 30 minutes and then went to our appointment, which took place at Dr. Bowers’ office. Phyllis is a middle-aged, no-nonsense nurse who will tell it like it is — with compassion but without pity. Mary Jo decided to skip the fireworks since she had already had an exciting morning, so Phyllis and I began by tidying things up. First, she pulled out my catheter, a procedure that only burned for a couple of seconds, subsiding within 5 minutes. Next, she pulled out the rest of my packing — they use 9 yards, so that meant that I had a good 7.66 yards left — and her methodical pulling and folding the packing resembled those magicians pulling scarves out of their sleeves. More and more and more emerged, seemingly from nowhere. With a final tug (which I felt deep inside me), the rest of the packing was removed. It was quite a relief, and I realized just why I had had trouble getting comfortable the past couple of days — between the catheter tube and attached bag and the 9 yards of packing, my entire core was tight and stiff.

The next step was to take a mirror and get a really good look at what I had paid for — Phyllis deftly oriented me to these new parts like a park ranger showing hikers how to navigate around a state park. I felt as if I should have been taking notes in case there was a quiz afterwards.

Next, Phyllis gave me the set of 3 polyurethane dilators that come with GRS and to show me how to use them. They come in a handsome roll-up carrying case, too. After showing me the set, Phyllis said we’d begin with the blue one (looking at the orange one just about made my eyes pop out of my head). I won’t go into detail, but suffice to say that it was quite surreal to have this grandmotherly nurse objectively and dispassionately talking to me while illustrating the proper technique of “applying” Mr. Blue into an orifice I didn’t have until just a couple of days ago. I felt incredibly vulnerable.

Next, Phyllis asked me to do the same while she watched and coached. Again, all I can say is that it surreal, being coached in the proper use of an object into a new body part, one that’s still healing with stitches and swelling. She kept urging me, not unlike a drill-sergeant, to relax my legs, something I would have been happy to do if I hadn’t just then been experiencing the business end of a blue plunger into me. “Relax those legs, soldier!” “Ma’am, yes Ma’am.” Eventually, I managed to achieve the proper dot (there is a series of dots so you can know when to stop before breaking through into what they technically call your innards) and was allowed to de-plunge myself; however, she explained, “your normal sessions will involve sitting there for a full 15 minutes before you stop.” Oh, Joy.

I cleaned up and Mary Jo came in and I got a full indoctrination into proper care of vaginas (mine, in particular), a second phase of boot camp that included manuals, pictures, and lectures. My head was buzzing with all this new information, so I’m glad I got some reading materials.

The rest of the day was pitifully simple by comparison — some television, some pizza with Mary Rae and her family, and puttering around the Morning After House. The only interesting moment came at the end of the day, when I set about doing my own dilation — outside of the bootcamp and Phyllis’ coaching voice. It was a lot harder on my own, and I wasn’t sure why. I was set to give up and declare myself a failure, but I somehow managed to complete the mission after much defeatist swearing. Note to all others seeking GRS — this part isn’t in your promotional materials, but be sure to take it into account when tallying up your psychic energy and enthusiasm for the procedure.

On July 13th, after being discharged from the hospital, Mary Jo loaded me in the car, and took me to Carol Cometto’s Morning After House, where we had stayed prior to going to the hospital. I spent much of the day sitting around and trying to avoid pain. I reclined on the upstairs couch and watched the Sotomayor hearings, but did precious little else. In the evening, a rainstorm moved over Trinidad, especially over Fisher peak, and we all watched from the porch. After the storm passed, Fisher peak was bathed in sunlight amidst a deep and thoughtful sky. The air smelled new and clean.

On Tuesday, July 14th (Surgery +5), I woke to a sunnycrisp view of the mountains, felt the cool air pouring through windows, and listened to Trinidad going to work on the streets below. This being Bastille Day, I decided I’d get out and walk a bit. Mary Jo, who had been staying very active while I was in the hospital by riding Carol’s bike and hiking, declared she was hiking up to the Trinidad sign, which is up to the west of the Morning After House, and not really very far. I sat in my easy chair, looking at the peak through my window, waiting to see her figure far above. When she finally appeared, I gingerly walked downstairs and stood on the porch waving to her while Danny took photos of her tiny figure below those enormous letters.

After lunch, we were thumbing through satellite channels on the TV and managed to catch Harold and Maude on AMC from the beginning. Although we had both seen it, we realized that it had been years since we watched it together. With its balance of comedy and raw emotion, fueled by Cat Stevens’ emotional songs, I alternately cried freely or laughed out loud. It seemed the perfect movie for this day, especially for me and Mary Jo, determined to live our lives according to our own desires instead of following other peoples’ norms.

Mary Rae, who was one day behind me, arrived at the Morning After House, and we sat out on the porch watching the sky and the ever-present Fisher Peak in front of us. I was getting really tired of the catheter and the packing, which made it increasingly difficult to find a comfortable position. That’s just the nature of this phase of things, but it leads to grumpiness and impatience.

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