I really do look like I was on the losing end of a knife fight.
Luckily I have 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.
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.
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 at the hospital 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.
Hours passed and I sat, trying to read a book, listening to the baby howling, remembering my own lost childhood conducted in hospitals. 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, 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 head.
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 waved her off and 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 I might 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, feeling the twitch.
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, tried to look intelligent. I refused the drugs, 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 point 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 wherever 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.
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’ve 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 British 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 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 tumor 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 tumors removed in morning sessions and go back to school the same day. Losing one small piece of skin and taking myself home does not compare.
Though I will not enjoy riding the bus with a bandaged face.
Last weekend I realized it was time to fill up the boat since it is best to have a full tank of diesel before winter commences. The only trouble is that the nearest fueling depot is three or four hours away on the River Great Ouse.
This journey would consequently be a serious endeavor, involving opening two locks. Which I did not know how to do. So off to a bookstore, where I purchased guides that served mainly to frighten me, and then early Sunday loaded the boat with children and snacks and set off.
Civilization drops off at the edge of Cambridge. It takes just a few minutes to go from crowded busy streets to deep country, with only the occasional herd of cattle gazing at us as we passed. You can go miles on the river without seeing any people, or even glimpsing a modern road in the far distance.
We passed a few pubs and country houses and found ourselves at the Baits Bite Lock. I jumped off and held the rope while Byron checked that our key worked the box. It did, so the next question became, where were the bollards?
We tied the boat down and took our guidebook over to stand next to the (abandoned) keepers house and ponder the question. I was reading the chapter on how to operate locks when a man hailed us from the other side. He wondered if we had a key?
We replied that we had a key but that it was our first time trying to go through. The stranger quickly walked across the footbridge and came down, patted my arm, and then started to rapidly explain all that we needed to know about getting through a guillotine lock.
I scrambled on to the boat and pushed off, Byron drove us into the lock, and the nice man shut the gates behind us, then opened the next set. He and Byron stood above talking and laughing while the children and I stood in the boat watching nervously as the water level dropped, taking the boat down seven or eight feet. Byron jumped down and we motored away, waving and shouting our thanks.
The next lock was much the same, though we were in a queue and chatted with a new set of interesting strangers. Then we were off again in a vast flat wild landscape, with herons and all sorts of fabulous birds swooping and swimming around us. We waved at other boats when they passed, and eventually found a small private marina next to the Five Miles From Anywhere No Hurry pub (most famously the home of the Upware Republic) that the guide claimed would have diesel.
But alas, there was neither an attendant on duty nor any diesel pump to be seen, and the local residents regarded us with suspicion. In the process of turning the boat round we seemed to pick up a snaggle of weeds. Byron did the short term fix of putting the boat in forward and reverse rapidly, but from that point our progress was much more slow. The wind also picked up at that point, making it impossible to know if we had mechanical troubles.
Onward, and wondering if we would make it to the next possible source of fuel before closing (because everything closes early on Sunday) we were dazzled by a brilliantly sunny afternoon. The children settled in the cabin and I wandered around doing necessary tasks. Byron was stuck with the job of steering because at six foot six he is simply too tall to hang out inside the boat.
Eventually we drew up next to the Fish and Duck at Popes Corner. This pub has been serving river trade for nearly eight hundred years, standing sentinel at the junction of three rivers. We had just moored when we turned around and noticed with great surprise the people who sold us the boat.
The coincidence that they would drive out to an isolated riverside pub and arrive precisely at the same time we moored was felicitous if not a true miracle. We talked for a bit and after everyone enjoyed refreshments they kindly agreed to teach us how to pull the boat around for fuel. It was quite a tricky maneuver, and it is highly unlikely that we could have done it without assistance.
By the time we finished filling the tank it was nearly four in the afternoon. The entire day had been consumed by our quest for fuel, and we realized that it would be impossible to make it back to Cambridge before dark. We decided it would make more sense to continue on to Ely.
It was a short journey to this Fens city, once an island but now part of the undulating farmland. We moored near the train station and walked to the nearest pub, which offered tasty treats for the whole family and tables above the water. We were mystified by the seemingly derelict ducks that ambled about under the tables and along next to the boats.
After the food we walked up through the park to the Cathedral and the children gasped at the sunset turning the sky pink behind the enormity of the building.
My throat hurts. I am not happy about it.
When I was twelve years old a surgeon sliced open my throat, pinned extraneous things to one side, and then gouged out as much of the cancer as possible without nicking other organs. That day, the massive tumor was deemed not just malignant but also terminal… so it was more important to be vigilant than careful.
As a result, my recurrent and superior laryngeal nerves are permanently damaged. This is why I sound like a demented child and have no projection. This is why I lose my voice during book tours, or whenever I catch a cold. Or at least someone told me that once. I tend to think that it is some kind of dreadful curse.
Byron helpfully suggested that I might have caught the hospital superbug during my recent appointment. I have in the past caught various strains of strep, staph, and a vicious case of hepatitis whilst in hospital.
But since I didn’t touch anything and watched carefully to make sure the doctor put on new gloves before digging around in my mouth, it seems unlikely that I have anything worse than a common cold.
My Seattle doctors were worried that I might not be able to get good medical attention in a nationalized health system.
I knew better, because I know exactly how extraordinary my body is. The GP nominally in charge of me did not even want to hear the details; he just put his head down and started scribbling referrals to send me off to specialists.
Today was my first appointment and it went exactly as I predicted. I was x-rayed and then had a long conversation with a physician who kept shaking his head at each major diagnosis. He wanted a comprehensive history but I shrugged.
I’m not even really sure how many surgeries I’ve had. I can only offer the bare outline of what has happened, and rarely care to bother with even that much information.
This particular appointment was in the oral surgery clinic and it is always interesting to see inside my damaged mouth. The tumors are easy enough to diagnose when they appear in the mandible, and I knew from a casual glance that the x-ray was clean. The physical exam was brief.
I can’t open my mouth wide enough to eat an apple but the degree of mobility I have is considered Excellent! Very good! by surgeons who know that it could be much worse. Several invasive surgeries inside the bone, a dislocation (or two) of the joint, and a fractured cheekbone should have left me in a sorry state.
But I’m okay. I just don’t eat apples.
Unfortunately going to the doctor leaves me in a black and seething mood. If the news is bad I feel nothing at all. But when the news is good I am calm and precise until I leave the clinic. Then I start to rage, silently, over the appalling injustice of living with this illness an entire lifetime.
But I’ll forget soon enough. I’ve never been healthy so there is nothing to feel nostalgic about.
I think that I’ll go work on my boat now.
The day was chilly and grey and it seemed like a good time to try out the woodstove on my boat.
Those of you who know me in real life are probably worried that I set myself on fire.
This is a valid concern. But before I started the adventure I made sure that the fire extinguisher was close to hand and the hatch was unlatched in case I needed an escape route.
I was a Bluebird and went to Campfire Girl sleepaway summer camp for years. During the rest of the year, whenever I was not busy with the whole cancer thing (and often when I was fairly ill), my family went camping.
We went to the forests, the rivers, the coast. We even planned to camp at the farm when the family convened for my uncles funeral, though on the way a drunk driver hit the side of our vehicle. I was in the back of the truck but the tent and sleeping bags contracted around me, keeping me safely off the highway.
But unfortunately, throughout these adventures, I was not paying attention. I was reading a book. I do not know how to build or tend a fire.
Lucky me the previous owner left the stove in good condition with paper, kindling, and coal already prepared. In theory all I had to do was strike a match and it would all beautifully ignite and merrily twinkle as the cabin filled with heat.
But this is my life, and instead of fire I mostly got lots and lots of smoke. I rushed about opening windows, paced and pondered, trying to remember all of those camping skills I should have picked up. Finally I started to blow at the mess, because this once worked to start a VW with a locked engine. Which might seem inconsequential, but somehow was connected in my brain with managing flames.
The fire ignited and started to burn and the kindling lit the coals and for the next several hours I sat next to the stove reading about the evolution of curiosity cabinets and natural history museums.
There are many advantages to living in this new pedestrian way. Picking up the younger child at school is not on the list.
I used to feel awkward around other parents because I was young (and looked even younger). It was difficult to communicate with people who waited until their thirties or forties to have kids. We simply did not have much in common.
Even when I had some kind of organizational status this was a problem. During the Co-Op years I participated in governance (and was drafted to be a co-President). But I hung out with Polly and Julia and their collective dozens of children in part because we had the fundamental connection of being teen parents. They were vastly more socially skilled than me and capable of ignoring the things that made me uncomfortable.
Eventually I found Gabriel and we sat in the halls with our heads down, scrawling in our journals. It was like having all the good parts of an adolescent friendship again, and I started to think about my own education. I realized that one of the things I did not enjoy about waiting in the halls was the fact that it was a school.
I’ve now tested this hypothesis and it appears to be true that if people had a bad time at school they do not enjoy visiting schools. Kind of a simple idea.
Now I am by no means the youngest parent in any given group. I am something like average in terms of age, and in this town the strangest thing about my appearance is my spectacles.
It’s not even a problem that we have the wrong accent; there is a steady turnover of people from all around the world and the kids go to schools that are dramatically more diverse than anything they encountered back home.
Yet I still feel just as awkward as I did a decade ago. The problem is apparently me. I do wish that I had the ability to chat.
I also wish that Gabriel could be here.
The visit with Jen was far too brief. We walked around various colleges and checked out the Wren Library. We biked to Grantchester for tea at the Orchard and later went punting on the Cam.
We made dinner and stayed up late talking. It has been sixteen years since we met at Governors’ School but the intervening time has not changed either of us as much as I might have predicted. We share a commitment to ethical behavior that can be exacting, but this makes it easy to continue talking to each other.
On Saturday we took the train to London and visited the British Museum and the Tate Modern. I thought the children might be bored but the girl was pleased to see canvases and objects by Dali and Magritte. She liked the David Goldblatt photographs, especially Miss Lovely Legs Competition at the Pick ‘n’ Play Hypermarket Boksburg 1980. The boy was amazed by the Gerhard Richter Two Greys Juxtaposed, and intrigued by the Cy Twombly sculptures.
They nodded over the Anselm Kiefer canvasses Parsifal and Lilith but neither thought much of the Beuys Lightning with Stag in its Glare.
On the train ride home we played hangman and the children amused people with their antics over the game. Neither guessed the solution when I plotted my surname.
Upon seeing L – A – my son guessed lachrymose.
We all got up early to wave goodbye as Jen departed for her conference. It was strange and lovely to wander around with a friend from home.
My new book will be featured on the Brian Lehrer Show on NYC’s NPR station WNYC 93.9 tomorrow at 10:30 AM.
Jen K showed up late last night and the kids adore her. They swarmed around, competing for her attention, rattling off theories about various subjects. We stayed up past midnight talking about philosophy, and history, and the vicissitudes of medical science. The children interrupted each other and talked in bursts of words, sentences, ideas tumbling so fast I could barely keep up.
Now the kids are off to school and the day is bright and chilly. I wonder what parts of Cambridge I should show a visiting academic? I haven’t figured out much except grocery stores and bicycle repairs.
Good thing I have a guidebook!