We were talking about how much our lives have changed in the last ten years and I asked idly "I can't remember - how long ago was my book stolen?"
Byron answered "September 14, 2001."
"Really? Why are you so sure?"
"Because everyone thought the break-ins were political."
My mind has not retained the details but Byron sketched in the scenario: a series of punk houses robbed, a warning from friends that we might be next. At the time I shrugged off the danger. I owned nothing worth stealing.
On the afternoon of the 14th I left for a little while to pick up my daughter from school, during which time Byron called me twice to reiterate his concerns. When I dismissed them he went home and turned on the radio to fool intruders.
Between the time of Byron's departure and my arrival no more than twenty minutes had passed. But as soon as I stepped on the porch I knew something had happened. I sent my kids back down to the street and raced through the house, fully intending to slaughter whoever had violated my home.
But they were already gone - along with my computer and cameras.
I stood in the yard and started to call around; yes, it was true, several friends had been robbed. Whoever did it knew the routines of the households because, as I had just witnessed, they were able to get in and out of each place while the occupants were away. Even though none of us had normal jobs or predictable habits.
My first instinct was to suspect that a friend was to blame and my brain started to rifle through acquaintances, looking for a junkie gone astray.
I was still in a haze of rage as I listened to my friends (and Byron) say that we had all been targeted because of our political affiliations. This seemed ridiculous - my activism takes the form of creating social networks for parents. Why would a shadowy government agency bother to steal my computer? Aside from the fact that such actions were then illegal, it just didn't make sense.
Though unfortunately it did track that the culprit was known to us all. Whether a mole or a junkie, the person responsible for the thefts was an insider. I just didn't know why they would bother, since our raggedy collection of computers was worthless both on a monetary and intellectual level. Certainly nobody was going to get anything interesting out of my files.
Unless they wanted to read the only copy of the book I had just finished writing. Sitting on my front steps, comforting the kids, I realised with a sickening jolt that years of work existed only on that computer. There was no backup.
Even in that moment it seemed selfish to care, because there were bigger things to think about. Three days after the terrorist attacks, we had not yet started to call the event 9/11, but the scope of the trauma was obvious. For the people who died, the people who survived, the witnesses, the families who lost loved ones, the rescue workers: that day was a cataclysm and horror.
It would have been more than enough to just pay attention and try to help the people who were in real crisis. But 9/11 was more than an individual event, it was a received public tragedy. It was terrifying, for everyone, and it had both predictable and unexpected side-effects.
Instead of coming together to mourn or organise, I watched my community and my country start to unravel.
My small family withdrew inward to protect a child who was convinced our house would be bombed. I deliberately distanced myself from the people I used to sing with, the ones who had also been robbed, because the paranoia of two or three was contagious to the others.
I started to look at these people, a much beloved and intentional community, with suspicion. Because I didn't know if I could trust them, didn't know if one of them was the agent of the crime. Because my dearest friend in the group was dismissive of the collective and individual loss of 9/11, even in the raw first days of confusion and grief. Because several opined that they hoped for absolute annihilation. Because, fundamentally, I no longer wanted to sing.
Over the next few weeks I realised that what was happening in my neighbourhood was happening everywhere. We were a microcosm, a tiny little raft of madness on a sea of insanity, and I suspected it would not get better.
The local kid who did yard work for all of was arrested over the robberies, complicating the response further - because he was a child, only fourteen, and would pay disproportionately for his crimes. While my own children, raised in the same place, would have been protected by my education and connections.
Disparity is disgusting, even when it is in your favour. I didn't want to see that kid suffering because he took something from me, and I didn't want my children to grow up with unfair privilege. But my opinions did not matter, and I did not get my computer back, at least not then.
I interpreted the loss of the manuscript as some kind of cosmic sign, a message from the universe to abandon the project. I didn't know what to think of the larger public tragedy, because it was too enormous to look at straight on.
The urge to war was at least a rational response, even if I disagreed on principle. But the fact that my fellow citizens were so willing to abdicate responsibility and decency and the rule of law eroded my confidence in my country. I was, and remain, a patriot - no matter how innocent or naive that sounds.
But rendition is anti-American: absolutely antithetical to the founding principles of our nation. Torture, whether committed by your own hands or under the direction of your government, is a war crime.
I did what I could, what I always do: I kept writing, kept working, took care of my kids. I also slowly started to crumble.
It was inevitable that I would succumb to a profound depression over the aftermath of the terrorist attacks, specifically the incursions on civil liberties. What was unnecessary was the grief over the lost manuscript, a wealth of despair that was both personal and pointless. Made exponentially worse by the tactless comments from friends that I could just write it again.
Somewhere in this sickening jumble choices were made, actions taken. Friends cobbled together money and sent me to Europe with Gabriel because we were, as they pointed out, merely decorative, and someone needed to go.
I walked the streets of Rome and Florence, visited churches and shrines, stitching my brain back together. Looking at paintings and art pillaged over the centuries, thinking about the history of saints and martyrs, sitting in squares that have hosted public executions for hundreds of years, in a landscape that has seen more woe than my homeland could even imagine: my problems seemed small and insignificant.
Standing on a stone bridge over the River Arno I announced that I would move to Europe. Gabriel solemnly nodded; it was the sort of thing people were saying back then. But I am both reckless and persistent, and Europe offered the consolations of history. I didn't know how I would get there, and doing it would prove the hardest thing in a lifetime of difficulty. But I did it.
The stolen book is gone forever, even if I write the stories again. There is no way to amend, cure, or heal that kind of loss. There is no solution, there is only pain, an injury substantially more disconcerting than anything else I have lived through. Nothing else would have driven me to such extremes, and nothing else is technically beyond the comprehension of my acquaintances.
During the trip to Europe I started a new project, a collection of stories that would become Lessons in Taxidermy. People who know about the stolen manuscript ask if the new book is better than the old book, but that is impossible to answer, because they are not the same.
Cancer did not make me noble, losing the book did not make me a better writer, 9/11 did not make my homeland righteous. Life is just life and we all struggle through. There is no moral to this story, no answer, and also no question.
Ten years ago I lived in Portland, Oregon. Now I live in London, England.
If you only know me through my work you might not guess that I have a relentless driving urge toward frivolity. What, me, serious? No way mate. I'm an utterly reckless hedonist.
Highly politicised, yes, but honestly, if you don't get the joke I don't want to talk to you.
This poses many problems, because most people can't tolerate my hectic chatter and wild laughter. It is difficult to find bosom companions. Throw in the complexity of family life, and the word is "impossible." My children are eccentric; as a collective unit we present many difficulties.
If it were easy to find parents who respect my perspective, I would not have created the community hipmama.com. If it had been feasible to locate a large group of parents I like with children who get along with my offspring, I would never have moved. I would still be in Olympia, or Portland, or Seattle, or Cambridge, or . . . you get the idea.
But that, alas, is an almost mythical quest. The alchemy that happens when parents, kids, and miscellaneous entourage get along is fantastic, precious, and rare.
Last week I was lucky enough to host one of the families that falls into that category. Sara K from the Chicken House is in Berlin for the summer and she came through London with her daughter, to the extreme delight of all. We dashed hither and yon, laughing.
It is really good to have friends.
I was in yet another speciality clinic and the doctor tapped his pen on a piece of paper. My blood work showed significant problems with my liver.
He said "Either you are drinking yourself to death, or you have hepatitis."
I blinked. "Um, well, I haven't touched alcohol for years, so I guess we can go with the other hypothesis. Or wait, maybe I had it? No. Yes. Definitely. I remember, I picked it up in the hospital in the middle of the cancer years."
The doctor started taking notes. "Which kind? A, B, or C?"
He dropped his pen and smacked both hands to his head (I am a terrifically interesting and terribly exasperating patient). "Why?"
"I was twelve years old!"
"But hepatitis C is dangerous! You might die!"
"It hadn't been invented in 1983, right? Anyway, I had other things to think about. Like the gangrene in my stomach cavity. Seriously, hepatitis would not have seemed important that year."
He shook his head and ordered more tests. I went back for the results a couple of weeks later: hepatitis A, not lethal, just destructive. In the interval I had remembered that during stomach surgery a few years ago my liver was found to be wrapped in scar tissue, and the doctor in charge that day had hoovered off whatever he could reach. Leaving me with a vague prognosis for further trouble, but no advice.
Why did I forget that?
Why would I remember?
Thinking about my internal organs bound up in scar tissue is creepy. I'm no fan of horror, especially when it is located in my gut.
The new doctor was mainly poking around in my ladybits and he found nothing out of the ordinary except the same old scars on my ovaries ("perhaps your intestines adhered and were ripped away"). This would be a victory - cancer tests negative, ahoy! Except the liver thing seems, oh, I don't know, important? The doctor shrugged.
From what I can gather I don't do anything that hurts my body. No alcohol, no smoking, no greasy food, in fact I largely follow the vegan-ish and gluten-free habits of my family members. My only real indulgence is jellybeans, and they are restricted by cost as luxury import items.
I mentioned the liver issue to the acupuncturist working on my fucked up hands, and she jumped in shock - what were the doctors prescribing, what was the prognosis? She seemed to think that "go home and ignore it" was not the best course of action. Though even a masterful alternative medicine practitioner is flummoxed by the notion that all of my internal organs are trapped in a web of scar tissue. She can give me needles to help with overall health, but the only way to really fix it would be to go in surgically and move stuff around. Again. Which I'm not keen to try.
Nobody wants to think about it. This makes me feel better, because it is in alignment with my own desire.
However. If my blood tests show "significant" problems with liver function, I reckon I should at least try to do. . . something.
The scene is always the same: brightly coloured murals, rows of plastic seats, a television blaring somewhere just out of sight, crying babies, and shattered parents.
I'm forty years old and my medical care is still coordinated under the auspices of a children's hospital.
Sitting in the corridor waiting for my appointment in the cancer genetics clinic I wondered if I could just bolt, though I limited my actions to a refrain of "I don't want to be here." Repeated every two minutes.
My charming companion replied "I know."
Now that white coats are out of fashion it is harder to spot the doctors - geneticists do not wear stethoscopes, and an alarming number of medical professionals are now my age or even younger. But I have had plenty of practice. When a harassed fellow hoisting a backpack dashed down the hall toward the consulting rooms I sighed. "Look. This will be a training session - I'll have an observer of indeterminate qualifications introduced only by first name listening to the whole fandango."
"How can you tell?"
"He looks like one of your interns, right? That is my burden in life. I am interesting to interns."
"Not the cancer?"
"No. My curse is that I am. . . special."
This is largely true, and the appointment underscored the fact. After introducing the intern the senior consultant measured my head, looked at my palms and the soles of my feet, and took a detailed medical history. As expected, she was nonplussed by the lack of data; if I were truly British my entire history and that of my family would already be logged in a central registry. But instead my x-rays and histology reports are scattered across the world, buried in archives, out of reach. Bits of my body are preserved and displayed in medical museums but the records are simply not available.
When we reached the maternal side of the family tree she flinched - they all flinch no matter how skilled - at the death rate.
The conversation ranged across the mayhem of my life, the complexity of the diagnosis, the fact that there may (or may not) be a second dominant genetic disorder. So hard to say; the experts are at odds, mainly because the statistics say it doesn't happen. To which I shrug and say: how likely is my life at all?
This particular debate is neither interesting nor useful. Leading clinicians in five major teaching hospitals have been unable to explain what they see to their own satisfaction, so why should I care? It makes no difference to me what the doctors call the disease. I just want to know what symptoms to watch for, so I can stay alive as long as possible.
Since I was in a cancer clinic the doctor was more interested than usual in details about where I was born and raised; cancer doctors never dismiss environmental factors. I waved my hand and replied in a desultory fashion: yes, my mother lived and worked next to a facility where nuclear warheads are assembled. I grew up between a submarine base and a naval shipyard, both of which handle nuclear vessels. I can recite the facts about the ships from Bikini Atoll, and the Hanford controlled emissions, but none of the known contamination incidents happened near me or in my childhood. That does leave a question mark about what we don't know, but out of sight is out of mind, right?
The official story is that I was not exposed to any radiation either in the womb or infancy, and if the Department of Defense knows differently they aren't saying. Though one might have suspicions, a hunch is not quantifiable.
Regardless, the appointment was intended to hammer out some details. Everyone agrees that I need a definitive diagnosis, and I have now faithfully submitted my skin and bones to hundreds upon hundreds of appointments with specialists. I've been examined and measured by premiere clinical researchers at some of the best hospitals in the world.
Largely to no avail - unless you think being categorised as a "first generation mutation" is helpful.
Here are the facts: I have a primary autosomal dominant genetic disorder diagnosed symptomatically by the presence of hundreds of cancerous lesions. I have a second, "unrelated" primary cancer diagnosis. Nobody can agree on when the cancer emerged, what caused it, how to treat it, or what the associated risks might be. Each new doctor is exquisitely confident, but the advice on offer is inconsistent at best. And, a crucial point: previous DNA tests could not confirm the diagnosis. Though that doesn't much matter, because the symptoms lead the definition.
My general reaction is to hum and ignore. What would you do?
Fundamentally it has never been in my best interest to care. I already see the best doctors at the best hospitals, and if they can't answer the questions, there is honestly no point thinking about it. Pushing through the clutter of dispute and analysis, this is a fact: we all die, slow or fast, and while I might do so in an intriguing fashion I do not especially want to be on display.
I'm a tidy person leading a disorderly life, on an essential level. I have cancer, present tense, now and forever with no hope of remission. That cancer is caused by a rare genetic disorder that we name although the tests do not confirm the naming. I had another kind of cancer that went marauding through my body for no known reason whatsoever, against all sense and wisdom, vanquished by dangerous medical interventions that might eventually cause yet another kind of cancer to kill me.
If I could get back the tumours and skin taken away over the years, I would put them on a funeral pyre with all of the records and watch them burn. I want to start over, new and clean, with my scars - but without the confusion and drama.
That isn't an option so I sit on plastic chairs, staring at colourful murals and listening to babies cry. I want to cry too, for myself, for those babies, for my own children and any children they might have, for all of us, everywhere, damaged by our environment, ripped apart and sewed back together in the name of science and progress.
But I don't cry. I just recite the facts and listen to another doctor expressing forceful and divergent opinions. I'm told, again, that the tests are expensive - as though that matters. I know just as well as the person on the other side of the desk that the samples will be used in research returning value far above the £1,200 cost of the procedure.
Then I sign a consent form releasing all of my rights to my own DNA, in exchange for yet another test that will offer no illumination or solace.