10.31.2004 sparkle

Byron managed to get my mother to the airport with plenty of time to spare, managed to make it to his train for the other airport with no worries even after the morning muddle. But in what we might call The Continuing Misadventures of Mathboy he realized that he had been relieved of some of his luggage. To be precise: the portion containing his extra clothes, money, and passport.

It is not possible to travel to Cyprus without a passport, no matter how important the journey might be. He had to turn around and head back to Cambridge and spend hours on the phone trying to sort out a solution. In the end he gave his conference presentation via speaker phone.

I observed from a distance, receiving text messages about his trials as I walked around town with the children getting ready for school to start, preparing for my own trip. It was all quite stressful, until I realized that the unexpected presence of a second parent would give me the time I need to make my deadline.

Last night we walked across Midsummer Common, staring up at the enormous orange harvest moon framed by the flash and sparkle of early fireworks. I turned toward the boat and Byron walked on to take the children to see the circus. I was not disappointed to defer this task; the children are often less than happy when presented with such treats, because they know too many circus performers. If an act is not, in their opinion, as good as Feather's mom, they scoff openly. Which I find embarrassing and rude, and then we have to have lots of long boring conversations about supporting artists.

I worked for hours by the light of an oil lamp and about the time I was ready to stop heard them shouting and scampering across the common. They loved the show, and came running up with flashing electric swords and tiger painted faces. The boat was filled with laughter and mock sword fights well into the night.

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10.29.2004 palace

The other night I was walking across Jesus Green in the dark. I could see a group of people sitting next to the Lock in a circle, and then fire, a brilliant illumination against the backdrop of water coursing over the weir. A few puzzled swans had stopped to watch the spectacle. I kept walking along the water toward my boat and started to think about the notion of home. When Sarah-Jane visited we talked about the towns we live in, and I told her that I am mystified not to feel more homesick since the latest move. She shrugged and pointed out that I am a traveler; this surprised me because I have always imagined myself belonging in one place. But I suppose my former geographic stability had more to do with the limits imposed by the illness than any particular desire to live where I grew up.

But seeing the fire made me miss my friends. I thought about Bob and the Palace, with the trapeze in the living room and skate ramp in the backyard. I wondered what my friends might be doing this week, and then when I got home there was email from both Bob and Marisa telling me about travels and adventures and plans. My friends never stay in one place either. I'm sure that I will see more people on this tour than I would if I tried to visit my old home.

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10.29.2004 dislocation

My dear old friend Byron Au Yong will be in Seattle to present YJ: songs of dislocation in November. I'm sad that I will not be able to attend, but if you live in the area you should check it out. For more information click here.

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10.29.2004 train

When I booked the trip for my mother I arranged her departure time to coincide with Byron's flight to Cyprus so he could escort her to the airport. They left this morning, and when I called to check on their progress Byron reported that he put them on the wrong train.

Lucky I left enough time in the schedule for these adventures.

The visit was lots of fun, though she arrived with a virus and spent most of her holiday sleeping. We all caught variations of the bug but managed to persevere and show Grandma a bit of England. We walked around many of the colleges, attended Evensong, went punting, walked to Grantchester and had tea at The Orchard, and visited the Fitzwilliam.

Just as we all felt well again it was time for half-term holiday for the children and we set off on a series of trips to London. We went to the Tower of London and the British Museum. The smaller child took his grandmother to see Chitty Chitty Bang Bang (they manged to snag the last two tickets for all of half-term). We wandered through the Food Halls at Harrods, bought Lego at Hamleys, walked down the Portobello Road and found a delightful little shop called Sasti where the children ordered kitty and hedgehog hats. The nice woman at the counter said that her mother is going on the British Antarctic Survey trip in a few weeks; we meet an extraordinary number of people connected with that organization.

While we were away in Ely visiting the Cathedral the wind came in off the Fens and blew my boat off her mooring. Luckily another boater caught the line and tied her down, and later had her boyfriend find me via the internet to explain what happened. We met near the boat later and had a lovely time talking to both of them.

Now it is time to work again. I need to get my stuff organized for the book tour, set up places to stay, figure out how to acquire the champagne for the party, and do sundry promotional work.

Not to mention the fact that I have exactly five days to finish writing the next book and it is still missing three chapters.

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10.20.2004 eugenics

We must say that we have already achieved much if these people do not start a family, do not reproduce without restraint and bring new generations of degenerate and abnormal children into the world. --Alfred Siegfried

A few of the countries admired for high standards of living and lavish social welfare achieved these results in part by enacting institutionalization, sterilization, and euthanasia programs. The targets of these programs were generally people with disabilities, people who were identified as homosexual, and members of specific ethnic groups. Nazi Germany had the most efficient and historically documented eradication plans, but it is important to recognize that the idea predates and outlived that regime. To read a bit more about Switzerland and the persecution of the Jenisch people, click here.

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10.20.2004 leisure

Since my mother was here to hang out with the children (and they often have more fun without me to censor their activities) I went to Zurich for the weekend. Byron was there on one of his work junkets. His normal schedule during these trips (and at home) involves writing papers all day, taking a dinner break, going back to work until four in the morning, sleeping for a bit, then going back to work at eight.

I do not understand the concept of leisure travel, though I do make a diligent effort to engage in the designated activities. I wandered around the city, found the Lindenhof, had hot chocolate at an enchanted little cafe, visited the church where Felix and Regula are buried, stared at the statue of Charlemagne. I picked up some enlightening facts about the Zwingli aspect of the Reformation, and the fact that Swiss catholicism is a splinter that does not recognize the doctrine of infallibility. I was sickened by some incredibly sinister facts about the Swiss eugenics program. I remembered too late that one of the contributors to the new anthology lives in Zurich, and wished I had arranged to meet her.

But inevitably I spent most of my time in medical museums, doing research, taking notes. My favorite part of the whole trip was the public transportation: the funicular system is gorgeous, the trams are punctual and pleasant, and the ferry around the lake reminded me of home.

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10.18.2004 cake

Eight years ago I was languishing in the hospital bed that had been my home for over a month. I had argued successfully against a planned surgery, but this meant that we were all waiting for the crisis. That morning it finally happened; the baby flipped and I started to bleed. I asked to wait, asked for tests, and a quick evaluation showed that my infant was in fact not ready to be taken. But the risk was too severe, and I was too ill, and the baby could easily have drowned in the blood. Finally I was taken to the surgical suite. They cut me fast, without surgical dressings to capture the blood, without appropriate anesthesia, slicing upward toward my belly button to get the baby out.

It took an entire year for him to catch up and become the strapping blond baby boy that he should have been at birth. It took another four years for the exquisite sensitivity of his premature arrival to fade. Now he is eight. He stands as tall as my shoulder. He speaks in full vivid paragraphs. He rides his bicycle, reads books, creates fabulous structures with Lego, spends hours each day drawing in his journals. He is one of the most eccentric and interesting people I have had the privilege to know.

We celebrated the day with sushi for lunch and salmon for dinner. He opened a vast array of presents from family members far away and the visiting grandmother. I gave him a proper bowler hat because he is obsessed with P. G. Wodehouse. He ran off to his closet to find a suit to wear. We all sat at the table laughing and eating chocolate cake and ice cream.

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10.12.2004 nose

My mother arrived today. After a brief greeting at Heathrow she squinted at my face and asked about the scar. I told her the story as we rode the tube to Kings Cross and she blinked and said that it is better than losing half your nose to cancer. This is a good point; I would not enjoy a nose amputation.

If you ever wondered exactly where I get my skewed sensibilities, now you know. She is such a tonic. The whole world makes sense when she is around to sort the important from the nonsensical.

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10.10.2004 stitch

Tomorrow I get the stitches out, which means that the wound is healed well enough to venture forth without bandages. The trouble is, I don't want to look at it. When I glance in the mirror I see not only my adult self but also the little kid with bleeding sores; the twelve year old with a lacerated neck; the seventeen year old with a smashed face. When I look in the mirror I would like to put my fist through the image reflected back at me. But that is a childish impulse and not worth dwelling on. Instead I will revert to practical matters, like finishing the next book before I go on tour in a few weeks.

I am not yet willing to reveal the title but the cover (courtesy of Gabriel) is simply beautiful. There are still two missing chapters and one long section needs to be spliced and moved around a bit. This is the hard part of the work - the details, the adjustments, the tedious editing tasks that can lead to doubt and despair if one is not careful to block out such thoughts. I keep ranting that I either must go work on the book now or that I never want to work on the book again and my family members just nod with glazed expressions. I'm sure they wish that I could go out and rubberneck with my pals. But I haven't lived here long enough to find those people. My only local writer friend is away on a book tour right now and thus unavailable to trade tormented tales.

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10.08.2004 journal

I really do look like I was on the losing end of a knife fight. Luckily I have loving friends who point out that it makes me appear that much tougher (as though I needed to). It is hard to smile because the stitches follow my laugh line but I am endlessly thankful to have Byron, AEM, and Gabriel around to find the humor in what is fundamentally a grim situation.

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10.07.2004 well

I generally make a fierce effort to pretend that I am well. But right now half of my face is swollen and a preliminary check of the wound indicates that the scar is much larger than anticipated. The vestigial reaction to trauma is impossible to control; my whole body started to shake when I took off the dressing to investigate. I am not at all pleased to be flung backwards to the visceral experience of mutilation.

I went out to buy vitamins and homeopathic remedies and turned my thoughts resolutely away from the scar. This is what I will do instead: work. The final proof of the Mamaphonic manuscript showed up last night and I will do the last proofread today. A few weeks ago I turned in the first half of the next book and the publisher was happy with the structure I used to pull the stories together. There was talk about a book tour in the spring. Now I need to sit down and finish the second half. Surgery is helpful insofar as I have brief access to memories otherwise not available; Byron laughed and said that I should finish quickly because this investigative journalism approach is no fun at all.

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10.05.2004 cut

I sat in the churchyard of Little St. Marys on a golden day, staring at the profusion of wildflowers and bracken, the assorted jumble of gravestones moved to make a path. If I could have had a wish I would have wished myself well. But there is nothing so frivolous available and when the clock chimed two I had to walk back toward the city to catch a bus.

The driver argued with me, said that I should move back and catch a shorter route. But I wanted to be on the winding lost bus to nowhere. I was in no particular hurry and sat looking at the city through the window.

Waiting in the reception area I could hear a small child screaming. The other patients sat dully around me, reading or talking to companions. The baby wailed -- not in fear, oh no, much worse -- the cry of someone who knows exactly what is happening and rages against the reality.

I was three years old when this disease became visible. I was covered, literally, in small white moles the doctor called skin tags. He prescribed a chemical treatment to singe the tissue off. At first it was necessary to sedate me for the procedure, but after years and years I could tolerate the burn as the stuff hit my tender young flesh. The doctor did not understand why the moles kept creeping back no matter how often he coated them with fixative. He asked colleagues, did research, but the textbooks all said that a person my age could not have the variety of cancer that was blooming on my body.

Hours passed and I sat, glancing through the Guardian, trying to read a book. I listened to the baby howling. Finally I was called back, the junior doctor stumbling over my silly name. She explained the procedure once again and asked if I had any questions before signing the consent form. What could I ask? It would surely be a metaphysical plea rather than a practical query. I shrugged.

I folded my glasses and set them on a chair next to my coat and book. I hopped up on the operating table and settled under the blazing lights. I closed my eyes. Surgical drapes were placed across my body and clipped around my face, then the whole adventure started. The doctor swabbed the left side of my face with a cold solution that rolled down into my hair. She took a pen and drew a line across the critical area. She called out to check that the correct scalpels and sundry surgical tools were all at the ready. The doctor said the injection would be the worst part as she thrust the needle in. The nurse reached for my hand, offered me comfort, but I mouthed that I was okay. I am okay. I am always okay.

I could hear the flesh being cut away, could smell the instruments cauterizing my flesh. The people in the operating suite gossiped about work and the weather; the sunshine had given way to a torrential rain storm. Occasionally someone informed me of their progress. I started to wonder if the procedure was strictly necessary, wished fiercely that I had stayed on at Little St. Marys instead of catching the bus. The muscles of my back and neck seized and I realized that my jaw was so tense it could crack a tooth. I consciously moved to stop the process of panic, started to relax all the muscles and bones ready to jump off the table, and the doctor paused to ask if I was okay. Yes. Yes, I am okay.

Memories surged through my mind. The smell of the gloves, the tingle of the anesthesia, the blinding light. The pressure against my face as a doctor pressed in, digging away to remove yet another tumor. I slipped into a familiar meditative calm, perfectly relaxed, breathing lightly, as the doctor pressed against my face, smashing the nose slightly to the right as she sliced away at my skin.

I have been diagnosed. I have been treated. I have had over three hundred cancerous lesions removed from the exterior of my body, not to mention the diseased interior. But I still do not believe that this can be true; it is so improbable, so inconvenient, so odd. Wouldn't it be better to be whole, to be well?

The doctor started to sew me back together, threads trailing across my face. She tugged to make a knot and my cheek and upper lip lifted away from my skull with the force. I held my head still, observing the movement, the twitching.

Finally it was done and I could sit up. The doctors skittered off to attend other patients and the kind nurse told me that I would need the stitches removed in five days. She suggested that I take a pain medication I have never heard of, recounted the essential rules about treating wounds. I was dizzy from shock and the pressure on my face but I nodded and tried to look intelligent then thanked her and wandered out of the room.

The clinic was already closed so I could not schedule my follow-up appointments. I walked down the erratically constructed hallways to the toilet and looked in the mirror. A massive bandage conceals what will be my newest scar. I've not been bandaged so extensively in over twenty years, and realized with a jolt that they had not asked me about any allergies. Because, you see, I am allergic to surgical dressings.

I pulled on my cap and walked out to the bus stop with my head down. I remembered with a sense of wonder exactly why my hair is so long; I grew it out to cover the scar after my eyelid was slashed open in 1988. I looked down at my clothes and shoes, all chosen for similar pragmatic reasons. To cover scars. To relieve pressure on wounds. To cosset broken bones. To prevent the sun from shining on my skin. Always, always in service to the disease. Other memories drifted through my mind. Whenever possible I forget, but the fresh cut reminded me of an adolescence constrained by surgical procedures. I was not allowed to bathe after surgeries and my mother washed my hair in the sink for years, carefully folding towels across my neck to protect the incisions.

The sun came out again as I stood at the bus stop with my bandaged face turned away from fellow passengers. In my adult life in the states I would never have considered using public transportation after surgery, but now I have no car. The night before I had reasoned that I rode the school bus throughout the most intense parts of the disease years, but standing at the bus stop I realized this was a fiction. I stopped riding the school bus in the eighth grade when the other kids started throwing rocks at me after school, and once attempted to set my hair on fire on the long ride home. Not that there was much for kindling; that was the year half of my hair fell out.

On the bus I wanted to hunch over and let my hair swing across my face like a curtain but sat straight up. There is no purchase in acting like a victim. When I was young and frail I had to learn to stand up and keep moving; it was a survival strategy. I wasn't strong enough to fight but I learned how to create an illusion of lethal intent. Because people do stare, and they do comment, and some people exploit weakness when they see it. I have cancer. This is my permanent state. I do not choose to meet the gaze of the people who stare and I do not accept that anyone has the right to look at me. But I will in fact go where I like.

In her wisdom my mother always insisted that I live as normally as possible, that I move right back to regular activities as soon as I was strong enough to go. This was the best thing she ever taught me, and I thank her for giving me the strength and knowledge to walk out of surgery and go to the grocery store to purchase ingredients for dinner. To walk through my newly adopted city and look at the church spires, the college buildings, the brick walls, the sunshine on one side and dark storm clouds on the other. I unlocked my bicycle and pedaled home to my boat.

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10.01.2004 freaks

Sarah-Jane has been wandering around Europe with Amanda (who performed at the Edinburgh Fringe Festival this year, wish I had known in time to go see her!) and she dropped in to see us. The visit was far too brief; we all love SJ. The children are hard to impress, but having a circus clown in the house is definitely a thrill.

We talked about the break-up of the band (very sad) and family secrets (very funny) and walked around town in the rain. We went to Kettle's Yard and drifted down winding streets and along the Backs, meandering along looking at the city and its inhabitants. At one point SJ turned to me and asked Are there any freaks here at all? I shrugged and replied Not that I have noticed. Or at least none with the customary cultural markers.

After she departed for Paris I went to another appointment, this one in the helpfully titled Lesion Clinic. It is now factually true that I have spent more time at Addenbrookes than I have visiting with friends.

The appointment was once again predictable, with the small and surprising twist that in the UK they call my disease after the doctor who published the first research paper on the subject. This is not accepted protocol stateside, because that doctor made a point of refusing the dubious honor. The other and more interesting difference is that the English appear to be a modest people; my body was completely covered and the gowns and blankets were peeled back in sections as the exam progressed. The doctor seemed competent and professional and didn't make a big fuss over the fact that my case presents a challenge.

Unfortunately she was thorough enough that she actually found a suspicious lesion. I sighed and nodded as the nurse filled out the paperwork to schedule my first British biopsy. Which will require stitches; this means that the spot is much larger than anything I've had taken off in the last few years. Apparently there is a four month wait for this procedure, even (as in my case) it is certain that the lesion is cancerous. But I am such a special and lucky creature I get to go back on Tuesday.

Evidently these procedures frighten the general population, because I was loaded up with instructions and tip sheets and it was suggested that I might need a companion with me during the operation. I just blinked and tucked the papers in my bag. I used to have a dozen or more lesions removed in morning sessions and go back to school the same day. Losing one small piece of skin and taking myself home to bed does not compare.

Though I will not enjoy riding the bus with a bandaged face.

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