Year: 2008

Forget all the news distracting grown-ups lately – my kid is very worried about what some mad scientists have been up to.

My reply? They’re Swiss, they won’t blow up the world, they couldn’t make any money on it!!

This did not prove comforting.

I do not know Stephen Hawking personally (though he nearly ran me over one night as he raced from the Fort St. George to Midsummer House) but luckily I do know many other Cambridge trained physicists.

I wrote and asked Paul for a synposis to soothe my worried son. After explaining the experiment (which you all understand, right?) this was his answer:

They’re hoping to find something called the Higgs boson – the ‘God’ particle that supposedly pervades the universe and gives matter the property of mass. Personally, I think they’re barking up the wrong tree with that one – it sounds rather like phlogiston and the aether theory of the 19th century. I don’t think there need be anything that gives particles the property of mass, as I don’t think it can be separated from the fact that the presence of matter in space-time distorts it, thus creating the necessary reconstruction of the universe itself that registers the presence of matter. This explains gravity quite easily, and I thought Einstein had it right in this sense. Physicists have failed to unify gravity with the three other forces in the universe and I think the reason is that it’s not a force.

So, to conclude, I think it’s very unlikely that the machines will produce anything untoward, and potentially even anything all that interesting. If the latter is the case, then they’ll build a far bigger one, of course, and the debate will reopen, although I would venture the same opinions again.

Now you know.

I am notorious amongst friends and family for blithe indifference to certain kinds of danger, particularly the sort that threatens my health.

Sure, I’ll stop drinking coffee if it hurts my tummy, give up sugar when it causes a rash, buy organic and local when doing so seems prudent. I’ve never smoked or used recreational drugs, I ride a bicycle everywhere – I could be the poster child for clean living.

But I have lived with chronic pain and incapacitating illness so long I regard both with benign indifference. There isn’t much that could surprise me, and I really can’t be bothered to have any emotions about the whole thing.

The recent session with the geneticist did not strike me as particularly illuminating, mainly because I did not want to think about what happened at the end of the appointment.

We had already discussed the assorted referrals (including sending my kid off to visit the cardiologists) and I was vaguely looking around, preparing to depart.

The expert on familial cancer leaned back in her chair and informed me that when she reviewed the chart she would have thought I had an entirely different genetic disorder.

Except, she went on, the presentation of skin cancer absolutely confirms the diagnosis. The trouble, the mystery, is how or why I simultaneously also had a virulent primary and unrelated cancer, since nobody else with the genetic disorder has ever presented with those symptoms in combination.

Especially not at age twelve, and more precisely, not in the accelerated and bizarre manner my disease announced itself.

The geneticist went on to say it would just be rotten luck to have two dominant disorders. On top of the sundry minor traits transmitted down the family lines.

True, though as I responded, I’m already deeply unlucky, with the DNA profile of a cesspit.

This might be a philosophical question, but which is better – to know and name the trouble, or to remain mired in mystery?

I gave up asking why why why approximately twenty years ago, and while I blinked in astonishment over the suggestion of an additional diagnosis, failed to even take note of what it is called.

Instead I asked How would my treatment change if I had this too?

She said that they would do frequent thyroid monitoring, but I’ve already had that organ hacked out. She went on that they would test for cancers of the reproductive system, but I’m well stuck in that routine based on symptoms.

Nothing else would differ, except I would have yet another pre-existing conditions mark against me in the great cosmic quest for health insurance.

Hurray for me.

Summer never truly arrived this year, and autumn is already here, with conkers falling off the trees, torrential rain, muddy fields, cold dark mornings.

My day does not properly start until I have lit the fire.

In the past, this was a protracted and messy ordeal that left me coughing, frustrated, and redolent of smoke, with very little warmth to show for it.

But over the course of last winter I discovered the most fantastic solution, courtesy of Andy at Midsummer Energy: eco-logs.

What are they? Essentially, tubes of compressed sawdust that you can break down to any size you need.

They arrive in 15kg bags that inform me the contents are recycled pure wood waste, C02 neutral, and produce low flue gas (which is apparently better for the chimney).

The description claims they are easy to light, and though I was skeptical this has proved accurate. I turn on a seven minute song and by the end of the lovely tune I have a roaring conflagration that will, with tending, keep me toasty all through the day and night.

Of course I am still not quite awake at that point, and spend another hour or so stumbling around unable to focus; but at least I am not shivering while doing so!

Best of all, if I can’t face the long cold slog down to pick up more, the nice bike messengers at Outspoken Delivery will cheerfully deliver for a very small surcharge.

Life on the river is in fact sweet.

During the school holiday I took my kid to Audley End, where I was bemused by the accumulation and display of centuries of private wealth, and he had fun playing Victorian games on the lawn.

If they call it a lawn here.

Walking back from the train station I absent-mindedly glanced in the window of a house and noticed a Trader Joe’s shopping bag: a common object back home but absolutely unheard of here. The sight made me clap my hands together and squeal (yes, I really do act like that) until I realized I was being both a voyeur andfoolish.

Just then a face popped up behind the bag – it was Karen holding her gorgeous daughter.

The fact I had no idea she lived there underscores a few interesting truths about life in this town, not least the hunch that I have not worked hard enough to sustain local friendships.

Karen graciously invited us in and fed us dinner, during which we had many fantastically entertaining conversations and my son (who used to hiss at babies) sweetly entertained a lively toddler.

I was especially intrigued to hear that, even though Karen certainly likes the town more than I do, she also misses the west coast in approximately the same way. Not just the landscape, or family, but the collaborative and community based nature of the arts scene.

Cambridge offers many advantages I have never experienced elsewhere, but there is literally no discernible underground. Artists, yes. Intellectuals, yes. Musicians, definitely – so many highly trained and brilliant musicians you stumble over them all the livelong day. We don’t just have buskers, we have opera singers on every other corner.

But the emphasis is very much on the cultural elite – the competitive and refined, whether mainstream or esoteric, is always always inherently part of the system.

This town is literally the definition of Establishment.

I’m sure it was different in earlier eras – I have read enough to grasp the incendiary nature of intellectual discourse here at various points. Though those times tended to coincide with a lack of en suite plumbing.

Now the town is too expensive and too transitory. This place is not like certain U.S. college towns where the waiter at the cafe has a PhD in chemistry, or your friendly bike messenger is a trained medievalist.

This is not a criticism. Karen agreed with me that the west coast can feel claustrophobic, overly idealistic, too personally demanding, often anti-intellectual. Exactly the opposite of Cambridge.

When I decided to move here I craved solitude above all else, and that is something I certainly did find.

I’ve been working flat out all morning, hair yanked up and sitting askew in a knot, glasses on crooked, dressed in ratty yoga pants and hardly anything else, writing about my favorite topics under a (self-imposed but nevertheless urgent) deadline. The best sort of day!

When I noted physical demands like “eat food” and “drink fluids” I shuffled into some clothes and went to Bacchanalia to buy water. Oh, and just in case anyone wondered, the water in the tank on my boat is not potable. I have to buy, even when I refrain from imbibing bubbles – and yes, I will in fact cycle half way across the city to buy from an independent shop.

It was only 11 AM so the girl at the counter squinted at me and asked So do you have the day off then?

I looked up, down, around, pondered the truthful answer, remembered that I am having lunch with David in an hour which counts as “leisure” and mumbled Erm, ah, sort of, eh, no.

Why, oh why can’t I answer the question, given that writing and publishing have constituted my day job for well over a decade now? I have no idea, but the week in news has made me pine for, and simultaneously rejoice leaving, the United States. Like you wouldn’t believe.

I am a working class person who survived childhood cancer to become a mother in my teens – and then defied all expectations to raise my family out of poverty.

When I grew up I became a scholar of politics and policy, then worked in government – including the office of a controversial western Governor – and have devoted my entire adult life to service.

My work has been recognized with awards, accolades, media attention, and financial remuneration.

I represent the ultimate bootstrap success story. The American Dream.

Oh, except I had to move to a different country because I have a rare genetic disorder that prevents me from acquiring health insurance at any price.

I have been following the news from home with an eye to writing about the election, but after watching the crackdown over the protests at both conventions and the officially approved speeches inside the various buildings, know what?

I just want to vomit.

I have nothing pithy to say.

The genetecist drew up a family tree and we both stared calmly at the results – entire branches marked off with a hatch, meaning: dead.

If most of your blood kin are gone, it is very hard to establish the veracity of a DNA claim.

I grieve for them in the extravagant, quiet way they would appreciate, but no matter how much I care, they will never come back.

My uncle Rodger was a world-class wit and only about fifteen years older than me. To a large extent our childhoods overlapped, and he was certainly the most playful of his set of siblings. Every year at Christmas we wore matching Santa hats.

When I evolved into a teenager with broken down cars he was the one who always rescued me – and my friends – with grace and good humor.

He died too young, before his own son came of age.

This morning when I checked my email there was a message and a photograph from the states announcing the arrival of a new little cousin.

Welcome to the world, Neven. Your grandfather would be tremendously, lavishly proud, and the rest of us are all so pleased to meet you!

Last summer I went to the GP with a few health concerns. She did a brief exam, heard the phrase “rare genetic disorder” and promptly wrote a referral to send me along to the breast clinic at the teaching hospital.

When the referral went through, that clinic noted the diagnosis of a “rare genetic disorder” and redirected me to Medical Genetics without first extending the courtesy of an exam, let alone a conversation.

I wrote a letter disputing the assessment, since I wanted to be seen by a breast cancer expert for a routine check. I’m fully aware of the risks and symptoms associated with my primary diagnosis, and checking in with my geneticist pals would not be illuminating given that I had symptoms rather than questions.

My main concern, which proved true, was that routing through Medical Genetics would extend the whole diagnostic process a dangerously long time. If the actual symptoms had been evaluated, I could have been in and out within weeks.

Instead, thirteen months elapsed before I was allocated an appointment with the genetics clinic.

Within three minutes the geneticist, baffled, pointed out that I should have been seen in the breast clinic. When I explained the efforts I had made to go there first she shook her head and promised to sort it out.

There is a a great deal of legitimate controversy about breast cancer screening, and I am considered too young for mammography in this country. Beyond that, I have already exceeded the safe lifetime dosage of radiation, so it isn’t like I am begging for more exposure to something that could kill me in the long run.

I just wanted to have a properly trained specialist look at my body, evaluate the concerns, and advise on an appropriate protocol for future checks. My GP is simply not qualified, but more importantly, not interested. If I will be routinely kicked to speciality clinics for average care, all that I ask is to be sent to the right place.

Having said all that, I remain astonished by the professionalism, compassion, and quality of care once I actually get the appointments.

The principle of rationing is effective and smart. I like knowing that, even if the system is slow, it does move along… and everyone gets the same access to services.

I doubt that my symptoms will result in yet another cancer diagnosis, partly because I have a superstitious belief that it would be unfair. I have already had more than my share.

But if I am wrong, will this one be the one that gets me? Something will, inevitably – I am not long for the world, not just because of the genetic disorder but also because of the treatments that have kept me ticking so far.

The larger point is: if I am diagnosed, what then? I have no support, no network or community or anything at all in the UK aside from a few friends busy with their own lives, and the children I produced – one too young and sensitive to cope, the other too old and adventurous to be constrained.

If I were still in the NW (or SF, or NYC) this would be different, and I would know that a huge group of people would swoop in to help.

In all of those places this would also be the corollary: I would not have appropriate health insurance, access to the best doctors, enough money to take the edge off the rest.

Life is a series of compromises and this is why I live in Europe – I believe, emphatically, in paying whatever is necessary to build a durable system of health care that benefits everyone. Not for selfish reasons but rather because I fundamentally understand what if feels like to go without.

The fact that I have abdicated everything else my heart desires is entirely beside the point.

I’ve been (as the kids say) hella busy – away on madcap adventures involving all manner of hilarity, including but not limited to visiting Knights Templar retirement homes and rambling along behind Victorian flower fairy hunts – in the presence of Queen Victoria. Or at least, a re-enactor portraying her.

My favorite kind of fun! For instance, this weekend I was – check it – riding on the very same carousel you might remember from Chitty Chitty Bang Bang. No, really.

I’ve made a point of avoiding the city centre for weeks now, partly because of the hordes of tourists, but mainly because of my latent anxiety over living in a socially constricted town (more on that later).

Today I deviated from the rule because my old pal insomnia was calling out for a dose of herbal sleep meds. Walking along, much to my surprise, what did I encounter?

On the corner in front of Holy Trinity there was a band called playing at enthusiastic volume for the gathered crowd. I watched with delight while my son sighed next to me, anxious to get on to the next errand.

Six years after moving away he still openly grieves about leaving Portland, but the truth is that he never much cared for the aspects of that life that were most important to me.

Standing there in the pallid, sweaty light of August in England, I could smell the band – though of course I do not have functional olfactory perception so what I was actually experiencing was a haunting, a ghost, the sensory memory of singing in public.

In a daily life sense I am about as introverted as it is possible to be and still function, but the stage is something else entirely. Whether the audience is big or small, hostile or celebratory, the best part of my odd job has definitely been performing.

Touring: long drives, cranky passengers, setting up and breaking down, irregular access to food and baths, crying or laughing down the phone to the people left behind, glimpses of old friends, either too much or too little time to accomplish what needs to be done, a near constant feeling of being lost – I love every last bit of the experience.

That is the one thing I have not been able to recreate here.

I miss having practice sessions in my living room. I miss sitting on my front porch late at night singing with friends. I miss the zine release parties, events at Reading Frenzy, dropping into the IPRC, making things and performing with friends

I still travel all the time, but I miss life on the road.

The band was playing later at the Portland Arms and I paid the cover charge, then stood at the back enjoying the particular and fleeting joy of watching live music.

I went over to Bacchanalia to surreptitiously purchase sparkling water and chocolate (shh, don’t tell) and the fellow at the desk asked Doing something spicy tonight?

I recoiled in shock and exclaimed No! Not in Cambridge!

I opened up the files from last summer to look for a photograph of an old friend from junior high but, although I have several hundred images from that trip to Seattle, there were none of him.

Then I remembered that the only time I saw him was one late night on Capitol Hill, when he heard my peeling laughter from down the block and came over to say hello before departing to play Pac-Man at Pony.

Or something along those lines.

During our email exchange about the accident anniversary Mash asked why I didn’t visit last summer, and I replied truthfully that I did not see any of my old friends.

Jeffrey got a handful of evenings of karaoke (I watch, he sings). Marisa came up for the opera. I spent an afternoon with Stevie, Anna Ruby, and Erin Scarum. Byron One, Two, and Three were all nearby, but snagged no more than twenty-four hours of my time to split amongst the group, never contiguously. I had dinner with Stella and Al. I ran into Scott one day on the sidewalk in front of Bauhaus, but we didn’t even sit down for a cup of tea.

I would like to say that I spent more time with my offspring, but I only ran into my grown-up daughter randomly one afternoon in Portland at the Zine Symposium. I snatched a few days with my son, in the middle of his visits with grandparents and friends.

The main reason for the trip was a funeral, and I did go back to the county for the gathering of the clan.

I stuck around only for the afternoon.

I certainly wanted to spend more time with mother, grandmother, and cousins – but the situation was simply too complicated and painful.

We all mourn in our own ways. Last year I sought the solace of the strange.

By dinner time that day I had been deposited, funerary attire still sprinkled with the ashes of my aunt, at the big rock show known as the Block Party. I met Laura, previously encountered as a Crescent DJ, and her pal Jody, someone I had only befriended days before, to watch bands I had never listened to play for a massive crowd of strangers. When that ended I went downtown and stayed out all night with the Himsa kids.

That formed the pattern for the rest of the summer. I hung out with Mark Mitchell and went to the Bus Stop. I deliberately though unconsciously surrounded myself with friends, but they were all new, with no shared memories of my aunt, no need to talk about growing up together.

It might seem counter-intuitive to lament the suicide of a junkie by disappearing into the nightlife of the city of our shared youth, but from the distance of a year the whole thing makes sense.

Most of my new friends have faced the same sort of dreadful damage my aunt sustained, but they somehow managed to stay alive. Several have kicked serious drug habits. They were all, without exception, willing to accept my precarious and perilous self at face value.

They didn’t ask for or need anything at all, and I had nothing to offer.

Last summer I took a break from being trustworthy, mature, and responsible. I needed the vacation.

Of course the new friends I made are now entwined in my life and other relationships.

But for that brief, precious, decadent summer – they let me laugh.