12.25.02 wind

My ancestors controlled the wind:

Saami and Santa

The children are content with their loot.

Tonight Byron gave me the best present I have received in recent memory: Children of Lap-Land by Thora Thorsmark, copyright 1939. It once belonged to a boy named Archie and is inscribed: Best wishes for a Merry Christmas from your teacher E. Kasche

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12.20.02 genes

Years ago, when I was in school and working with the disability group on campus, my friend and colleague Jenni helped set up a conference. The keynote speaker worked on disability policy in the Clinton White House.

We sat in the audience and listened to the man speak. Jenni was enthralled; their eyes met; it was love at first sight. Or at least that was my interpretation when, because she was my ride home, I ended up going along on their first date. He was staying at a hotel near the airport and we stopped in at a karaoke bar and they stared longingly across the table at each other and talked about art. I was bored and amused myself by cross-examining the man (an attorney and superstar in the world of public policy, my field of study) about his romantic and health history. At the end of the evening they parted wistfully, and I informed them that they would have to give me a role in their wedding.

They were married at a vineyard in California, the wedding was announced in the New York Times, and Jenni moved to D.C. to take up a job in the disability policy field. They have a lovely little girl and Paul is now a Commissioner of the EEOC.

The PBS series OUR GENES/OUR CHOICES engages viewers in a critically needed dialogue about the implications of this rapidly advancing field. The three programs in the series - Who Gets to Know?, Making Better Babies, and Genes on Trial - tackle personal, social, legal and ethical issues surrounding the development of genetic science.

In one segment of the program, Supreme Court Justice Stephen Breyer and Commissioner of the U.S. Equal Opportunity Commission Paul Miller debate the value of genetic tests.

Check your local PBS listings for the show times, and read more about the historic and legal framework of the issue:

Our Genes

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12.19.02 arrests

Mass Arrests remind us of our terrible complicity in past atrocities. This country remains a legitimate democracy only so long as we respect the letter and intent of the constitution. Read real history. Work and protest for civil rights and against those who would act outside the law, before we lose everything.

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12.19.02 r.i.p

I can imagine my mother and her best friends, short skirts and carefully curled hair, cutting class and giggling as they smoked behind the school. Fifteen, sixteen, seventeen, parties, accepting rides from boys who drove hot rods too fast down winding country roads. The county fair and the destruction derby. Cigarettes and alcohol, fast cars and the Beatles. High school graduation followed within weeks by marriage, and within the year, babies.

We grew up with our parents and the shine of adolescent friendships faded under the weight of real life, sick kids, jobs and school, hard work all the time and no more parties, no more cutting out.

My mother named me after her two best friends from high school. One of those girls died on Wednesday evening after a terrible struggle with lung cancer.

R.I.P.

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12.17.02 stereo

When he was fourteen years old, Byron worked as a dishwasher at the Wheatridge Dairy to save up money for a stereo. He bought it, finally, at age fifteen, and then added a cd component when he was in college.

The cd broke around the time we started dating in 1992. The stereo itself has traveled with us through all of our moves, and for the better part of the last ten years it has been broken: the tape player didn't work, the stereo needle was dirty, the speaker cord is a spliced piece of phone wire.

Most people would have given up on the thing long ago, but the image of a gangly young Byron riding his bicycle across the suburbs of Denver in the night, scrubbing pots and pans, back and forth motion through two summers, kept the machine in a place of prestige in our family. Last summer, it was the first piece we moved to Seattle; it required a special trip, Byron and Chris driving the machine and cords and albums up ahead of the rest of the furnishings.

We bought a needle and Byron cleaned it and put it together and we listened to our Don Ho albums, our import singles. But we both assumed, with no research, that it would be too difficult or expensive to get a cd player to work with it.

When the VCR started to eat all of our tapes I decided to buy a cheap DVD player as the family holiday treat. We opened the box and Byron stared at it, pulled it out, and placed it on top of the stereo. He fiddled with some wires and then the most astonishing thing -- we had a cd player running through a good stereo system with speakers.

I couldn't find my Rosemary Clooney Christmas album so I played the Blur song Girls & Boys and we had a disco party in the living room. Then I put in The Gossip and the music filled the whole house and we jumped around and sang along:

All I want is a revolution
All I want is a simple solution

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12.16.02 winter

Winter is the season of hibernation, reflection, death. Here in the Northwest it is wet and muddy, fallen leaves grinding with dirt, the colors of the natural world reduced to shades of gray, orange, and green. We won't have snowfall of any significance this year.

There are certain characteristics I share with people born near the winter solstice; disciplined work habits, cautious ambition, thriftiness. All of these can be attributed to the season of our birth, the season we turned one and two and three, napped through puberty, finished winter finals, the fact that we have always been cheated out of proper birthdays by the proximity of religious holidays and the New Year.

I buy gifts for the appropriate people, take the children for Santa pictures, go to parties. We talk in the family about recognizing our good luck, about taking care of people who need help. I walk through cold city streets and pretend that I am happy, because that is the socially required mood for the season.

My birthday this year will mark the twentieth anniversary of my cancer diagnosis. Twenty years since the words terminal cancer were noted in a medical chart in a rural hospital. The birthday will set off the usual routine of appointments and tests, because I've been locked tightly in the medical schedule all these many years; appointments every month gradually easing to every three months, then six, and now once each year. But always in the dead month of January.

The month is something to endure, to survive. I tried to reclaim it; my wedding anniversary coincides with the birth of Elvis on the 8th. For years I threw huge parties, hundreds of people crammed into my big creaky house laughing. But I've given up the pretense, because no matter what effort I make, there will still be tests, appointments, funerals.

This year my namesake is dying, of a terrible invasive cancer, and I doubt she will live long enough to see her grandchildren open the gifts she bought for them.

Last year just as I started to plan my big party I heard that my college mentor had drowned. When I was nineteen years old, already a mother, and very sick, he sat me down and told me that I was a writer. He said reading your work is like walking barefoot through broken glass. He said don't try to pretend you are something else. You have no choice. But I resisted, wandered away, and never saw him again. I had planned to send him some of my published stories, the book, but never did. He died, and I canceled my party and went to the funeral, wishing that I had listened more attentively to his advice, that I had more than just a fragmented sentence to remember him by.

The year before that, Byron's surrogate grandmother died alone and in great pain. She shared my birthday, and I admired her tremendously. She was a proper church lady, a Texan, an oilmans widow, the person who lovingly adopted the young Tennessee ministers family. She took Byron to see Benji, played board games with him, and threw a party when we turned up married. She gave my children presents and we sat in her living room making polite conversation. She was adorable and funny and had long braided hair and blue-patterned china and spiky indecipherable handwriting.

Another holiday, we were in Colorado visiting Byron's father who was in hospital with cancer, when we heard my grandfather had died unexpectedly. I stood in a dark hallway, my head pressed against the wall, trying not to cry, then flew to Oregon and drove four hours up the freeway to speak at the funeral, consoling my sobbing children.

A winter birthday is a terrible thing to contemplate, and when I was younger I was mainly irritated by the fact that I didn't get enough stuff. Or that all my friends had viruses and couldn't come to my party. Or that I was sick myself. I used to be angry at the casual disregard I received on my special day, used to throw my own parties and give myself special treats. But the accumulation of the years has dulled my interest, made me less vain.

Now my perspective is different, though still intrinsically selfish. I just wish for once that these weeks could be subtly less dismal. Perhaps imbued with marginal jolliness. Or at least, that a year could pass without a death to commemorate. I don't want a present for my birthday. I just want people to act with decency and honor, for my friends and family to be healthy and happy, for people to be nice to each other.

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12.12.02 rituals

Last weekend was extremely busy; we took the Southworth ferry to drop off our youngest with his grandparents. Each ferry in the system has its own character and Southworth is the melancholy ferry. As it leaves the dock and glides away from West Seattle the land seems to slide away, revealing the tremendous Mt. Rainier looming over the sound. Then we drove against the sunset toward Poulsbo.

My mother just opened a gift shop downtown and we wandered around fingering her devil duckies and stuffed animals and then went over to the Kvelstad Pavilion for the St. Lucia celebration. The Leikering dancers performed traditional dances from Finland, Sweden, and Norway, the little girls swirling and bobbing. Their outfits were a mix of fabrics, not the standardized red and blue I remember from my childhood. But all the little girls had long hair held back in braids, unlike the seventies and eighties when my peers had either short hair or big perms.

A storyteller gathered the children and told a long story about a Norwegian king who committed adultery, was poisoned by his queen, and the illegitimate baby who rose to power as the King of the People. He kept insisting and this is a true story and the crowd stared up at him; he was holding a wooden goat. He talked about house gnomes, and then about the history of St. Lucia. He said that she was martyred, her eyes gouged out, that she was beaten and then burned at the stake. Other parents stared at him with open mouths, but I laughed. It was real storytelling of the kind I remember hearing from immigrants who still had accents, who couldn't read English. The storyteller said that many years after Lucia died the people in Sweden were starving, and they prayed for assistance. A beautiful woman came by boat with food and clothing and before they could thank her she was gone. It was Lucia, of the light.

The Vikings could be seen down the boardwalk, holding torches, marching toward us. They were dressed in skins and roped boots, the fire reflecting on the still water of Liberty bay. One of the women stopped to stand guard at the fire pit. The others marched past the crowd and down to the marina to receive the Lucia Bride.

She could be seen dimly across the water, in a wooden viking boat, attended by fire, the oars dipping in unison under the flat black water. She wore a wreath of electric candles. My son decided this was way too much and departed with his grandmother.

The bride arrived and was escorted to the bonfire. The Vikings gathered in a circle and lifted their torches, giving tribute to the souls on the other side, the space between life and death, the incantation inciting the crowd to let the light of the fire warm their lives in the coming year. The Lucia Bride held a torch to the wood and the Vikings screamed and brought down their torches and the bonfire roared up into the night.

***

We left the children with their grandmother and rushed to take the Bainbridge Island ferry back to Seattle. We drove up to Ravenna for a champagne reception at our real estate agents house. We stood in a corner eating canapes and talked to a massage therapist and librarian, said hello and goodbye to our hosts, and moved on to the next party.

The company had rented all the reception areas at Seahawks Stadium. We were issued drink tickets and wandered into the crowds. There were billiard tables, free food and dessert, long lines for drinks. We moved further into the assembly and found the stage show, an circus act, with trapeze and fire.

Upstairs we found a jazz band, a rock band, and gambling. We wandered from room to room amazed by the spread, the excess, the clothing of the other guests. It was semi-formal and two different company groups were present so we saw a whole range of fashions, from the fabulous to the faux-pas (even I know that you don't wear pantyhose with fancy open-toe high heels).

By the time we made it home, we were too exhausted to do much except lay in the middle of the living room floor and stare out the windows at the trees and lights.

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12.11.02 name

This morning I watched the sun coming up over the Cascades, casting pink and golden light down the hills and across the valley. The light streamed in to my house, and I closed my eyes.

A few days ago one of my long-lost cousins tracked me down. I haven't seen her since she lived in my house briefly in the early eighties, when I was desperately ill. We didn't get along, in point of fact I was mean and my first inclination was to apologize and maintain a polite distance. But she, remarkably, has finished law school, changed her name, found a life outside the family -- and in growing up and away, she has started to ask the hard questions about our secrets.

Our cultural heritage is diaspora, poverty. We all know some of the story, but nobody knows the truth. The whispers of babies given away, of children taken by the state, of bodies washing ashore, of fugitives and criminal predilections, were deemed dangerous by our strong and eccentric matriarchs. They burned documents and pictures. They maintained silence, refused to talk about where they were from, or if they talked, the stories do not tally with known facts. They would not even let us know our last name.

My generation of the family is a classic immigrant success story, if you look at the basic facts; two of us with graduate degrees, the others with reasonably good jobs, no major problems, settled, some of us raising children. We are the summation of the debt, the reason the facts were hidden, the citizens of a democratic nation. Our great-grandmother lived in fear of deportation to a country where people starved. If she were here today and I asked her to tell the story of our family, she would most likely throw up her hands in exasperation and tell me to watch where I'm going, not where I've been.

But she is dead now. They are all dead. The threat of retribution is nonexistent. And I want to know where I came from. I want to know if I have living relatives elsewhere in the world. I want to know if my genetic disorder is a family characteristic.

I want to know my name.

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12.10.02 telling

Yesterday I read a news report about a woman who frequented alternative parenting sites. Her husband is on trial for murdering one of their adopted children. She apparently knew about the crime - her other children witnessed it - and actively helped hide the murder. They buried the boy in their basement and continued to collect benefits in his name.

How was the murder hidden from authorities? How did this family mask their murderous rage well enough to adopt children in the first place? Why didn't the neighbors, the community, the state, and the online support network notice the spiraling violence, and the actual disapearance of a child? This family was not in hiding. They lived in a neighborhood, they registered as homeschoolers, and the mother actively communicated with a parenting support group. Yet somehow, all of the people who were privy to the emotional state of the family allowed this crime to happen. Or if the community can't be held morally accountable for the crime, the question can still be raised: why didn't anyone notice that it had happened?

My first reaction was despair for the child, and for the siblings who witnessed the death. Then I started to sift the facts and match them to the people who once used my discussion boards. I thought of at least six known individuals who fit the emotional profile. Luckily, none seemed to fit the geography or specifics of the case.

Throughout the first five years I maintained an online community, I encountered truly astonishing examples of nurturing, assistance, activism, and support. I know that the site helped many people get the help they needed to improve their own lives, whether as a source of entertainment, information and advice, an escape route from bad situations, or a path to true love. Online communities can be intensely helpful and good for the participants.

But as the administrator I also saw the dark side of the endeavor. I had to deal with the stalkers pursuing victims, the hateful in-fighting, the community members who truly needed professional services to deal with their mental health issues. I had to deal with law enforcement on numerous occasions when crimes were admitted or discussed on the site. I received death and kidnapping threats.

I was forced to evaluate sensitive situations, family secrets, and decide whether or not to act in real-life when the facts admitted might put someone in real peril. I observed with sadness as people with borderline personality disorders or more serious illnesses demanded and received attention and support for dramatic bad behavior and high drama. The abusive behavior of a few people routinely damaged the experience for the rest of the group.

Originally I allowed anonymous posting on my site, with the hope that people would be able to seek support more easily if they didn't have to state a name. One woman admitted she abused her children. I was horrified but could not act because I didn't know the identity of the author. Much later, when I realized who it was, I would have turned her in. But I didn't know where she lived. In real life, if it had been a neighbor or friend, I would have dialed child protective services without a second thought. But with an identity masked by technology (narrowed in that case by IP address to the largest provider in the region, and no further) it was tragically impossible. When she realized that I knew her secret, she didn't leave the discussion boards; she started a campaign of slander against me.

I shut down the discussion boards for many reasons, most economic, but the complexity of the ethical challenges were punishing. I could not continue to provide a service that cultivated a culture of support for people who really needed more than an online community. It was beyond my skills, and beyond what is possible in voluntary online communities, to act in a conscientious and mindful way. I felt personal responsibility, and I could not keep the women, and by extenstion the children, safe. It was not beneficial or wise to keep the boards open, so I shut them down.

I have been called judgmental, harsh, and reckless, but in my life there is very little room for self-deception and no room at all for collective lies. I tell the truth. I call people out. If I know that an injustice has been done, I rectify the situation or remove myself from danger. When kids are involved my perspective sharpens drastically. I would never let poor parenting pass unmentioned, whether the source was a colleague, friend, or family member. To think that so many children are suffering and even dying gives me a visceral pain, a profound and real physical ache.

I hope the children who survive growing up in that household and witnessing a murder find someone in real life to be their advocates, to be on their side, to reward them for telling the truth.

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12.2.02 lynx

Does anyone remember Lynx?

Apparently it still works. I am rather baffled.... but you can actually navigate through many of my web sites with Lynx.

Tonight we were feeling nostalgic about early days on the internet.... our first PPP capable machine... the day we finally had ftp.... Mosaic.... first generation web site design... when it was all so new and shiny and we believed it was a revolution.

Those were the days, my friend.

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12.2.02 ask

My daughter plans to ask Santa for a rock tumbler and colored duct tape. My son will be asking for a conga drum (to erase the tragedy of last year, when he asked for bongo drums and Santa delivered them, but he had actually wanted a single tall drum and didn't know the word). He also wants a toothbrush and drew a diagram illustrating how these two items will make him happy.

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12.1.02 photographs

Moe sent word that she would appreciate copies of the chorus pictures. The guests were still wandering around in their jammies when I opened the hope chest and pulled out stacks of prints. Marisa was in her sleeping bag next to me and she watched as I shuffled through hundreds of loose snapshots, dozens of photo albums, and boxes of archival work. I have a fairly complete history of my high school social scene up to graduation, incremental documentation of the growth of my children, publicity shots with Ariel, chorus events and excursions (protests, Ladyfest, lingerie breakfast, mudwrestling hoedown), and much of the work James has done since 1987. In fact, I have more of his work than he does, because he burned all of his own copies of juvenilia negatives and prints.

Looking at the photographs from the eighties with Marisa, I named the different people she has heard me talk about. I wondered if she would think about my anecdotes differently when supplied with a visual point of reference. When I tell stories the information is arranged for maximum humour, for archetypal resonance. I don't dwell on the physical characteristics of the people involved, nor do I even have the capacity to judge their relative beauty.

Michelle sat down with us on the floor. Michelle was part of the same social scene in high school; we never met each other but we have friends in common even though we grew up on opposite sides of the mountain range. She looked at my high school graduation picture, taken in her hometown by one of her friends, a black and white shot of me with heavy eye makeup and long blonde hair held back with a scarf. She pointed at another photograph, taken by James when I was eighteen and pregnant. You look younger now she said.

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