Greetings from a borrowed Brooklyn garden on a gorgeous hot day! I’ve been so busy there hasn’t been a spare second to report on my escapades.
In case you were wondering, this is what top secret projects look like:
May 22 has had huge significance these last five years; I really do not know why so many interesting and odd things happen on that particular day, but it is true.
The editors, marketing staff, and publicists were excessively professional and lovely and we feasted on cake as we worked out the plan to promote the book.
Then my agent (another new development) took me to tea at the Savoy.
I find this all quite extraordinary.
Today as I cycled toward yet another Addenbrooke’s appointment my progress was thwarted by throngs of Elizabethans cluttering Trinity street, with police escort. I sighed and paused to let the trucks full of movie equipment pass, then dodged through crowds of women in long velvet gowns and men in metal helmets.
When I stopped for tea in the market square the friendly chap on the stall inquired what I planned to do with such a glorious day; when I informed him that I was going to a surgery clinic at the teaching hospital his eyes widened and he asked What will they do to you?
I shrugged the reply Nothing. Though I still have to go.
I was right; the appointment was a routine x-ray examination, with an obligatory short conversation with a person who may or may not have been a surgeon (doctors and surgeons have different professional titles and I can’t keep the facts straight).
I might claim that it was surreal that, after reviewing my chart, she asked So you have had lesions in your jaw?! in a shocked and perplexed voice, even though my records clearly state that I’ve had at least half a dozen surgeries for that particular anomaly. She had never met anyone with the genetic disorder, never encountered anyone like me, ever.
I’m used to conversing with baffled medical personnel, and I know how to read my own x-rays.
I patiently pointed out the areas where the tumors grew (easy, that – look for missing teeth and bingo!). Old scarred bits are the grayish areas. New tumors are clear circles.
Here in the UK they always, without exception, treat me with tender concern and ask if I have any questions. I try not to feel exasperated when I give a cursory No.
Why would I have questions for someone who has never met a live human with the disorder? I’ve been living with it my entire life. I’m the best expert available.
But again, that is all routine. The new and interesting bit was the fact that the walls of the examination rooms featured signs that read It’s okay to ask! with a picture of hands being washed.
The small print informs patients that they should not feel nervous about asking staff and visitors to scrub. The lack of hand hygiene has been my number one complaint in the hospitals in this country.
Last year when the nurse started taking stitches out of my face without properly scrubbing, I was momentarily speechless, and then my brain kicked into rage.
When the fellow chirped an inquiry about the biopsy I snarled It was cancer, making him jump.
He knew that the results had not been added to my chart and nervously asked why I thought the news was bad.
I retorted Because I have cancer.
It would have been far more effective to ask him to wash his hands, but I didn’t process the information that quickly.
But anyway, my x-ray was clean, the appointment over in less than twenty minutes including the removal and re-installation of earrings never taken out otherwise over the course of twenty-five years, and then I rode the bus back into town, sitting in the front row of the top of a double decker, peering down at bits of the city I never see from the seat of my bicycle.
I checked my mail and was amused to discover that my referral to gyn-oncology finally went through, precisely eighteen months after my GP put in the request. Since every single one of my other specialist appointments were issued within days of the original request, this delay has struck me as particularly fascinating.
In this country they do not do yearly pap smears; there is controversy over the efficacy of mammogram; certain breast cancer drugs accepted as proven elsewhere in Europe and the US are denied as experimental (read: expensive), and a person like me can’t get an appointment for love nor money.
My GP tried, several times. I talked to the clinic directly. Nothing happened until the geneticist intervened. Though to be fair, my GP did recently refer me to the private system covered by my insurance; I just didn’t have time to make the trek out to Trumpington.
I find it ever so interesting that it is easy to get treatment for the symptoms that are not dependent on my gender, and nearly impossible to see a gynecologist. The reverse is true where I come from.
Later I sat on the wall at St. John’s for a bit, watching Cate Blanchett swan around pretending to be Queen Elizabeth. Some giggling undergrads came through the gates all aflutter to have spotted Clive Owen.
I’ve never been very good with nouns when speaking out loud. The names of objects, in particular, often escape me – as do the names of people I know.
I click my fingers and substitute whatsit for cup and it for the name of a friend’s beloved child.
Living in another country exacerbates this problem, even though the language here is the same one I ostensibly grew up speaking.
Some of the differences are easy to remember: pants are not trousers, for instance.
But unfortunately the multitudes of other differences are more difficult to track. The fact that a number of my friends grew up speaking various other languages, or different dialects of English, adds to the confusion as we sit over a late dinner lavishly describing something that could be covered with one precise word, if only we knew what it was.
My need for privacy overwhelms any urge toward disclosure, in matters both large and small. I do and feel and think all sorts of things that I would never write about, nor even discuss in person. In fact, I can state with some degree of accuracy that nobody reading these words actually knows that much about me, regardless of how long they have been in my acquaintance – or how intimately involved in my escapades.
Most people who hang out with me find this infuriating. Unless they have told me a secret, in which case they are cautiously optimistic that I will not expose them.
I do tell the truth – and occasionally I shock people with information that I would categorize as obvious or trivial – but for the most part I am simply not interested in providing a detailed summary of my existence. And yes, I am aware that this stance appears contradictory given the fact that I have written a memoir (not to mention the existence of this journal).
If I could conceal more I would; for instance, in most of my published writing I have attempted to obfuscate details like the name of the town where I went to college. Mostly because that particular place has a specific meaning for many people, and using the word would distract from the point I was trying to make in a couple of essays. There are numerous examples like this.
Then there is also my (sometimes reckless) refusal to be affiliated with any organized group or institution, and a persistent belief that my actions do not define my identity.
Often this tendency is useful in pragmatic ways; it certainly contributes to my ability to skip through wildly disparate social situations. Other times my desire to keep secrets seems to be a pathological anomaly that should be discarded posthaste.
Doing so would at least improve my conversational range. I’ve been away to London for a few days to celebrate something I’m not prepared to talk about, and I’m off to New York soon to meet Gabriel and work on a top secret project. What is left to write about except a report on the (currently vile) weather?
The fact that I’ve developed an allergy to my favorite sunblock isn’t a scintillating topic.
I went away for a week and the city bloomed! The riverbank is awash with Queen Anne’s lace (or at least, I think that is what it is called – I’m no naturalist), the nettles keep grabbing my ankles when I jump on and off the boat, the trees are glistening with new leaves, and the Jesus Ditch is home to a fresh crop of ducklings!
The reading at the Horse Hospital was great fun, though I was temporarily rendered homesick by the Portland theme and glimpses of so many friends and familiar places. But the lovely audience briskly cured me of the flash of nostalgic longing.
There are too many new friends and adventures in my future to worry much about the past, especially when I can go home and visit whenever I like.
It was quite splendid to chat with various audience members, including a nice fellow who corresponded with me before the move to the UK, a man I met in Rochester who has a jealousy-inducing taxidermy collection and beautiful children, a nifty woman I met online who knows NY friends in real life, a highly entertaining literary agent, and the publishers of Nude Magazine.
And, though it seems odd, I’ve grown fond of seeing people out of context. It was nice to spend time with Pete and Chloe in a place that is not cluttered with previous associations. Particularly since Xtina and Iain are such gracious guides.
Do you ever feel like your life has spun into a confectionary dream? Full of adventure, fun, thrilling secrets, and too many treats to document without a penitential visit to the dentist? Yeah, I know, me neither.
I’m back from a long road trip around the UK with Chloe, Iain, and Xtina including sights too numerous to list. Highlights included Derek Jarman’s garden, visits with artists and musicians in Rochester and Brighton, a mad dash down the coast, and a hotel full of mannequins.
My life this week looks like pure sugar candy: