Month: December 2005

12.31.05 amended

The best film during this winter week has proved to be an old favorite: Sixteen Candles. Has the rating been amended? It claims to be PG but I’m fairly sure that my mother had to buy our tickets when I first went with Mash and Anne to see it at that grand old theatre in downtown Bremerton in 1984.

I’m sure at the time I identified with the Molly Ringwald character, though looking at the film now I’m not sure why. She is such a whinger – and not at all nice to any of the people around her, except the best friend with the big hair and badass boyfriend. This does not reflect my life at the time; I wasn’t exactly as messed up as the Joan Cusack character in the back brace, but I definitely had no desire to crack the cool crowd or date a hunk.

The only social aspiration I’ve ever had was to be a geek, and they weren’t having me.

This was such a point of sorrow I was compelled to write a zine (not that we used that word back in olden times aka 1983) detailing the social schisms of junior high. With broadly sketched parodies of the school administration thrown in for extra credit. Which I then distributed in the school for three years, as you might imagine creating quite a stir. Without actually gaining any new friends.

Oh, and another point about that movie: when I was growing up the school bus was actively dangerous. The band kids would huddle up front and hope that nobody would pull a knife on them during the journey. The metal kids occupied the back and blasted AC/DC on their ghetto boxes (which is the correct historical term, unfortunately) while carving up the seats.

I sat in the middle and kept my head down except when chatting to a kid who was convinced that if he performed certain rituals Satan would bring him back from the dead after his next suicide attempt. I don’t remember if he was the same kid who liked to nail live kittens to trees.

I never did manage to become an official geek.


12.28.2005 list

I’m on the list.¬†Nifty.


12.26.2005 tree

In the states I kept a tinsel tree up all year – it sat on my altar and was decorated with the various seasonal ornaments the children brought home from school. The younger child complained mildly that he would prefer a real tree; luckily he has no memory of the years we were so poor we had a tree made of construction paper.

Christmas in my mind is definitely about the gifts, with a slight nod in the direction of my cultural heritage, insofar as we officially believe in Santa. It can be difficult to find everything on the wish lists but nobody was disappointed; I’m especially fond of my new bike lock.

The only mishap involved a Lush bath bomb, an unwanted gift that my daughter passed on to me. It would have been perfect for her, as she spent her entire childhood with glitter embedded in her scalp. It was not such a great thing for me to use without reading the label, as I do not enjoy sparkling and it won’t wash off.

The stuff is now all over not only me, but also by extension Byron. Though he looks rather fetching glittering up the place with his Tin Tin haircut and Gravy Train. tshirt.

Happy Boxing Day!



12.21.2005 jealousy

I’ve written about this elsewhere (for instance, in the chapter called Spoiled) but I’ll say it again: I do not understand why anyone would be jealous of anything I have, or anything that I’ve accomplished. Mostly because I do not understand or experience the emotion. I’ve been driven half wild by other sorts of feelings, like rage, but never by any variation of envy.

Perhaps my lack of emotive thought on the subject has something to do with the extreme isolation that chronic illness creates. Here inside the experience of living with a rare genetic disorder and two different kinds of cancer, it would be hard to survive if I allowed myself to compare my life with another.

I’ve been sick since birth, and I expect to die young. These are facts I live with, and yes — it is sort of depressing. But mortality is a fundamental part of life; we all have to die. There isn’t much point dwelling on the issue.

This topic is on my mind at the moment because I’m aware that the rest of my journal this month is rather insufferable. It would appear that I’ve had a fantastic time, and that is in fact true. I always have the best toys, the grandest adventures, the most fun available. On purpose.

The working class and political part of my brain struggles with abundance. I maintain an often violent internal debate in which I am thankful for my own economic stability and angry that others do not have the basic things they need. I’ve only been middle-class by income definition for about three years, and while I appreciate the security I’m not so sure about the rest of it.

When I meet people who tell me that they are jealous of my life, I am surprised and run through a mental tally of what they might like to have: the history of profound life-threatening illness? Not fun.

The excessively messy and reckless personal life? I can’t even write the full truth until a few more people die.

The eccentric, maddening family? It isn’t easy living with geniuses; they tend to be an awful lot of trouble.

The expat thing? I don’t live in a friendly place, and I truly miss my home.

The only thing left is the whole middle-class thing, and you know, I don’t believe it will last – nor do I approve of middle-class, middle-brow activities and entertainments.

People who are wiser than yours truly inform me that nobody will ever believe that my life has been difficult, because I never complain. This information is interesting but not useful.

I find lamentations boring; life can be frustrating, lonely, sad, and sometimes gruesome. I’ve lived through more than my fair share of trouble and it is perfectly reasonable that I should want to have a good time. That starts with recognizing and documenting the good things.



12.19.2005 interview

Except from my Mamazine interview:

I value community, but I’m not interested in drama. Life is far too difficult and fleeting to get mired down in scandal, gossip, or fear. When I get depressed, I put on a costume and throw a party.


12.14.2005 truffles

Just as I finished writing the below rant Byron knocked on the boat window and handed me a package with regards from Daniel: Cru Sauvage truffles!

It is hard to sustain a bad mood when people are so nice to me.


12.14.2005 morbid

The morbid months are well and truly upon us. I hadn’t noticed because this month started so well – I should plan to go on tour every winter.

Last year at this time I was home, sitting in the hallway with my back against a radiator, furiously finishing the final copyedits for Lessons in Taxidermy and wishing that I could stab someone in the eye. Not exactly a festive feeling. Though from the evidence in my public journal, I was doing a pretty good job of faking it.

More about magazines: the Piers Morgan interview of Steve Coogan is hilarious and reminds me why I continue to read GQ. I was also thinking about why I tend to enjoy the celebrity and lad mags but not the glossies for ladies and came up with a somewhat simplistic but possibly valid explanation: if I’m going to read stuff that drips with hatred of women, I’d rather it be from the male perspective than the female. This is quite likely a character flaw, but remember, I work in the media. I keep my enemies close at hand.

On the subject of gender differences, I would like to lodge a protest about the fact that Joaquin Phoenix and Seal are both routinely featured in glowing reviews and lifestyle pieces that never once mention the scars on their faces.

No female in either industry, if they could create a career at all, would be able to avoid talking about such things.

My radical disability side thinks it is amazing that anyone can achieve mainstream fame without having to talk about the scars all the time. Hurray for integration and acceptance and so forth. But the part of me that had to learn to accommodate the reality of being a girl with hundreds of scars is just plain annoyed.

I refused to have plastic surgery to correct the more gruesome examples, but it occurred to me that the doctors must have done something to my torso before I was old enough to consent or decline. I asked my mother and she replied yes; they injected every single skin cancer scar with cortisone.

So, in service to the presumed vanity of the adult I did not become, I underwent not only nearly four hundred biopsies, but four hundred cosmetic renovations. Without my consent or knowledge.

It is not surprising that I now have a terrible allergy to cortisone, and a fierce hatred of unnecessary medical interventions.


12.13.2005 advent

The toys in the Playmobil advent calendar today: guinea pigs!

Recently I was telling friends about my early entrepreneurial efforts to raise guinea pigs for fun and profit (not for medical testing; I sold strictly to friends and pet stores). For several years of my adolescence it is true that I had quite the little breeding scheme, with cages everywhere and constant mayhem.

It is also true, despite what my cynical friends might believe, that guinea pigs are the smartest rodent. They can live in the house like trained dogs, walk on leashes, and if coaxed, dance. One of mine even saved a family from a fire.


Sadly I had to give up my pets during a period of household chaos, but I still like the creatures. I do not know why they are included in a plastic nativity set, but it seems fitting somehow.

On the subject of childhood hobbies, my son saved up enough money to buy a telescope. Several weeks after he took it home David congenially came over to help him assemble and calibrate the device. I cooked a proper Sunday dinner (or my version of it, with a roast chicken, coconut rice, and mountains of kale) and then scuttled into a corner, holding a magazine in front of my face while the technical work was executed.

Later we gathered shivering in the backyard to look up at the craters on the moon.



12.8.2005 people

I have an unnatural love of glossy magazines; in a normal month I read (in addition to the obvious intellectually stimulating sorts) British GQ, a somewhat random mix of Hello and Ok!, most of the newspaper Saturday magazines, whichever other newspaper inserts have free movies I want to see, and every single issue of Now. In fact, I am more aware of the magazine publishing schedule than, say, which day the trash goes out.

This is a habit I’m sure that I have in common with large portions of the population, though perhaps for different reasons. Some people might be truly interested in the (generally boring) celebrity gossip, or the views of Jade Goody, or the latest news about fashion/food/drink. Not me; no, I read them because I am trying to assimilate in a new country.

Perhaps the glossies aren’t the best way to understand life in the UK?

For instance, this morning I read an article by a woman who was celibate for lack of opportunity for over twelve years. The other day I perused a rant (written by a man) about how normal women don’t put out. These magazines offer, in addition to what would seem completely extraneous directives on items to purchase (nobody, and I mean nobody, should ever consider spending several hundred pounds on a handbag – especially not an ugly one), extensive advice about sex. Particularly in GQ, this advice seems to assume that the average reader is inept to the point of imbecility.

Now, I am aware that my life and social scene is not exactly normal. But can it possibly be that bad out there in the larger world? Do people honestly have such terrifically awful trouble finding a partner, and then figuring out what to do with said love object?

I can’t fathom, and remember, I’m the one with a mutilated body and dissociative brain. I don’t care what anyone thinks of me, I have no interest in the banalities of conversational conventions, and I do not flirt. But even so, my only romantic problem has been shedding whichever person I no longer liked. In fact, since age sixteen I have never been single, not even for an afternoon. For large swaths of time I’ve maintained demented and definitely inappropriate liaisons (Byron being one good example, given that when we got together I was married to someone I had misplaced and did not wish to find a replacement).

I am of course a perfectionist; if I’m going to do something, it will be done well or not at all. This definitely extends to all physical relationships; I would never settle for less than I deserve. I’m both arrogant and damaged enough to presume an extreme form of entitlement, in which physical pleasure is a mandatory part of existence.

In this I’m fully in line with most of my peers, a hedonistic crew of people who ravage around the countryside having adventures. Even those who enjoy cozy domesticity are certainly not in need of Dear Abby style sex tips.

When my friends run into trouble with their love lives, it generally takes the form of stalkers, or starfuckers, or the consequences of dating more than one person at a time. If they’re single it is for some random political reason, or obscure spiritual beliefs, or because they are raising young kids (one should never underestimate the work this requires), not because they can’t get a date. Not because they’re incompetent. Given that a large percentage of people in my acquaintance have survived¬† physical abuse, these points are particularly notable.

Now, I know that there are lots of people who have trouble finding what they perceive as true love or worthy partners. This is also something I do not understand, given that the fairies did not gift me with beauty, style, social skills, money, or any of the other qualities that make a person desirable.

I’m wholly invented, from scratch – what I project to the world is what I choose to show. The people I allow in my life are similarly products not of nature but of hard work. Byron has always been fairly luscious, but the ladies set their caps for him more often now that he has a prestigious job. I liked him just fine when he lived in a van.

To reverse the example: he took a hankering for me when I was a poorly dressed bureaucrat who never talked about anything more scintillating than the fiscal policy implications of implementing the ADA. The life we lead now, in every detail, was chosen with deliberation – and achieved by dint of hard labor. If either of us had been inclined to wait for a perfect partner, we would still be sitting in cafes in downtown Olympia Washington.

But again, this does not in any way mean that I compromised my (lofty, eccentric, and unfair) standards to be in a relationship. I just found someone with sympathetic views, who wanted to help raise my kids. Everything else followed the decision to build the sort of life we both wanted. No part of the past fifteen years has been easy, but if you let go of the idea that it should be, life can often be wild, strange, and scandalously fun.

I started this rumination with magazines, and should bring the point back around. I guess that I have to wonder if people would have better relationships, hotter sex, and more intense lives in every possible way if they spent less time reading about the latest trends in lip gloss and more time having adventures.

Though obviously I could be wrong, and I have no inclination to stop reading magazines.


12.6.2005 highlights

Some highlights of the tour:

-Train rides through DC and Maryland.
-Driving around aimlessly looking at monuments as it was too cold and windy to get out of the car.
-Standing in front of the Declaration of Independence, the Constitution, and the Bill of Rights, and crying.
Atomic Books! Owners and staff alike, simply genius. After the event I hung out downstairs and offered emotional support for a broken boiler (it might be wise to avoid my company when you need emotional support).
-Dinner with Baltimore & DC friends including some roller derby mamas.
-Walking with China to see the Christmas lights.
-Meeting Byron at odd and unscripted moments.
-Losing my voice several times but always within reasonable distance of stores that sell remedies.
-Madcap and mildly distressing runs to various airports, often at four in the morning.
-Flying five times in eight days.

And the most important:

-Fabulous audiences who laugh at all the right places!