Yesterday I met with an agent who seemed rather delightful; I'm sure that I was not at my conversational peak because it was mid-day. I always perform better in the evenings. The agent asked to see a complete copy of my manuscript, and I promised to send it along after patching up the middle chapters.
Throughout the day I received email from four different friends who have chronic life-threatening illnesses. We all feel isolated both in our daily lives and in the twilight depths of the medical world. We all approach life as activists, and experts, meticulously researching every aspect of every decision, walking into appointments with superior knowledge. But we have no real community, because we are too radical, too strange, too difficult. Our conversations take place in back corridors, on the periphery of projects that are more socially acceptable.
I started to think about the projects I've done in the past: from the youth liberation movement, the disability civil rights work, to the hm boards, a series of huge and overwhelming efforts that allowed me to defer credit and continue to pretend that I was invisible. All of those projects were chosen and executed with ferocious intent and they all allowed me to ignore the core of my own identity, and even as I built community for other people I never found it for myself.
I thought about the project I started to research during the winter - doing a new independent press with some incredibly talented friends - and realized that it was another grand idea that would take up all of my time and attention and allow me to subsume my own creative ideas. It occured to me that my desire to administrate projects is actually pathological. How can it possibly be healthy to put in years of work for a project and then smile as someone else receives all the credit? Somewhere during all of the years of work I confused collaborating with co-opting.
My presumption of an atheist version of karmic reward has proved true, and I don't regret anything invested in the work. I just need to learn to use my scarce time and resources to do work that is more useful to me. The motto I have always professed is I live to serve and it isn't necessary to repudiate it entirely.
I think that the solution to the conundrum is to drop the grand plan and finish writing the book about danger.
Or at least that is the plan today.
I have a cold, and I'm miserable. My boy is home sick too. We are a sad pair, drooping and coughing and sniffling around the house, wincing at the bright sunlight streaming through the windows.
There are few things I hate more than being sick. Specifically, having viruses; because I believe quite firmly that I've had more than my share of illness. It is not fair that I should have to cope with seasonal maladies.
It might be okay if I could take some lovely drugs; but I'm not allowed. I don't even know why. Maybe the fact that I don't have a thyroid? It always seems to come back to that pesky cancerous organ. If memory serves I can take Sudafed but that doesn't help me sleep. Occasionally I sneak some Nyquil but always feel both wicked and worried afterwards.
I've never used drugs at all - not any of the recreational varieties, not even so much as a cigarette. I have allergic reactions to most pain medications (including all varieties of codeine and morpheine). I'm not supposed to take anti-inflammatory medications (liver damage) or OTC cold meds (the mystery mentioned in the previous paragraph).
I am aware of the herbal treatments; the trick is figuring out which tea is allowed, and which might spawn an allergic reaction. Because many herbs have the same side-effects or dangers as the allopathic options.
Life is so dreary when a sinus infection fogs the mind and the most I can look forward to is an herbal cough drop.
Why worry about conspiracy theories when the truth is so much more scary?
The visit with Jenni was remarkable for many reasons. The most amusing was the fact that people who knew me as a young mother, and watched with puzzled expressions as I parented my wild child, are now parenting their own rambunctious babies. Don't misunderstand - my friends were not judgmental and for the most part were a source of great solace - they just didn't have kids. The world is a different place when it takes an hour to get a little girl into pajamas.
Jenni reminded me of events that I had forgotten; scandals much diminished by time; and a whole lost epoch of my life. We talked about mutual friends, the people I've missed, the people I hope never to see again. She marveled at my innocence and idealism back then, at the fact that I could not accept backroom deals and cronyism and favors.
I laughed. I haven't changed - I am still transparent, a trenchantly ethical soul in a society that demands nuance. Since birth I have known right from wrong and no matter how much I wish that it could be different, I cannot change my moral code to advance my career or get along with people or even to save my most beloved projects. I'm cold - an icebox - and Jenni said that it took her awhile to understand that my reserve would never diminish but that I was her good friend.
Byron wandered in and out, keeping track of the kids and working on his presentation for work. At one point when he stopped in the kitchen I admitted that it has occured to me recently that I might be excessively secretive. Byron and Jenni simultaneously shouted Yes! and threw up their hands.
I blinked. This response seemed a little excessive, but then it occured to me that I might be confused about how other people see me, given that I used to think I was invisible.
Jenni reminded me of the time we were under deadline for a report and I had to leave work to attend to my grandmother, dying in hospice.
That night was the last night. I sat at her side and listened to the rattle in her chest. In a moment of lucidity she looked at me and said one is enough, don't have any more children and then she drifted back into her pain and drugged dreams. She muttered about her own lost babies. Seven children, and none had reached the age of fifty. One baby lost to premature birth, one suicide, one murder. She knew that two others would die shortly, of cancer and diabetes. I sat at her side in a mobile home stinking of death and dogs and tears welled in my eyes and ran down my face.
Throughout that long night she drifted in and out and had conversations with her dead children and also her brother, murdered in his youth. She called out to her friends long since passed. When my cousin showed up to see her, our grandmother said goodbye, the breath rattling in her chest, and then she was gone. The family clustered around, her sisters and surviving children and cousins, silent and wary.
I fell to my knees and cried and cried. My aunts and mother patted my back tentatively and told me to get up. The family does not believe in demonstrative emotion.
That night the family prepared the body for burial. After, I drove home and sat on the cold tile floor of my bathroom sobbing inconsolably. The next morning I got up and went to work, my face mottled and bruised. We had a deadline.
I worked throughout that day and then stayed up all night working on the report. What other option did I have? I was young, ambitious, a mother. I stayed up all night until my frayed nerves were deadened and we finished the report, Jenni looking at me sideways. We turned in the results and then I drove home to help arrange for a funeral.
Jenni reminded me that the other women in the office did not approve; in their eyes I should have been home tending my child. But of course, they had the luxury of a middle-class upbringing. Whatever choice I made at any single moment was critical to the survival of my family. There was no money anywhere, no resources, nobody else to pay the bills and buy food and take care of us. I had to work.
After the working group (the project staffed through the Governor's office that became my masters thesis, on the subject of implementing federal civil rights law at the state and local level, using a participatory research methodology) Jenni moved to D.C., got a job, and proceeded to canoodle with an EEOC commisioner. I took an exempt position staffing two statewide advisory councils.
It was my job to set up the whole endeavor - from finding an office to buying equipment to hiring and training staff - while simultaneously staging public events throughout the state. The events had to meet the basic requirements of civil rights accesibility rules, but also had to meet my own personal standard of true compliance. To someone outside the field this might not be a significant statement. To anyone who has worked in the field, it is an extraordinary concept. At the time, personal computing was not the norm. State systems were not unified. It was difficult to get Braille documents, let alone go the distance for full public access.
Every single event I staged had full translation of all documents, including audio versions; state of the art hearing impaired equipment; sign language interpreters; and deaf-blind interpreters. Without exception, every venue was up to code to accomodate people with limited mobility, in a time when the legal standard had not been implemented in any buildings during construction. I ordered and maintained lighting and sound equipment that would integrate all the meetings and provide a valid record. All events were strictly monitored for environmental sensitivity factors. If anything went wrong, I made sure that the venue paid - or risk losing the business of all of state government.
Eventually I hit an ethical quagmire that I could not sort out. I will not tell you, dear reader, exactly what happened - partly because (as noted earlier) I am secretive. But more importantly, because I am a person with a disability and my solidarity to the cause is more important than your desire to hear titillating gossip. Suffice to say, I tendered my resignation and exited the career.
When I told Jenni the story we laughed together. I'm old now - these events happened in another life. I've structured my life in such a way that I never find myself caught between morality and reality.
Talking to Jenni made me think of the last few years in a new way. She said that she lurked on the hm boards, and asked me questions about some of the community scandals. I was astonished - because it occured to me for the first time that these projects are related. Apparently, I have a jagged and somewhat infamous tendency to take on responsibility for hard, important projects, to disapear inside the work, to set goals for myself that are too high.
After the visit Jenni wrote:
I was thinking a lot about horizons in the last few days (before reading your latest), because the horizon is a constant reference point with tremendous visual interest here. I find it endlessly fascinating to see the views of the mountains from different angles, and find it gives a remarkable sense of place. An obscured one, ever-changing from a single location depending on the weather conditions, but on the rare clear or partly-clear days there is a sense of knowing where the world rises up around one, where the landmarks are. I missed that tremendously in Chicago, where it is so flat that the horizon is always the same. There are no natural views in the midwest. The only way to see where one is is to go up in a high building, and then it feels artificial. This is something I love about San Francisco as well -- the ability to go up on a hill and look down & around at the places you've been or might go to, to see them from different perspectives and see the relationships between them. Here in the Northwest, the presence of the white-capped bowl of mountains surrounding Puget Sound has always been comforting to me, an invitation and reminder that there is something out there, wild and knowable, that I could escape to if I wanted to.
Hmmm.... but maybe that is a dream of the land rather than of the sky...... maybe James is right after all....
Jenni is coming to visit tonight; we coordinated the Union of Students with Disabilities back in our college days, and later staffed a special project through the Governor's office (which Governor? Why, the one who had the sex scandal; but I don't remember his name). I haven't seen her in several years, and now she has a young daughter. We have a lot to catch up on.
I'm looking forward to the visit but malingering instead of cleaning. She knew us when we lived in a shotgun shack, in a punk house, and in Portland (before Donna gave us bathroom doors). I bet she won't be surprised that the couches are on walkabout and the only tidy aspect of the living room is the Christmas tree.
James emailed about my recent backroad adventures. He said that my impression of Shelton was how he felt about his entire recent visit; after Chicago and Tokyo, the Northwest seems empty, mildewed, slightly decayed.
I responded I'm still convinced there is no sky in Olympia.
He replied Not having a sky is only a symptom of a much larger problem: no horizon line! Where is one to start to dream the sky if they don't know where it begins?
I've spent the last few days obsessively trying to buy a good cheap slide projector on ebay, much hampered by the fact that my laptop crashes every few minutes and I only have a slow modem and dial-up connection.
When I finally won the auction I realized that I couldn't, for complicated and tedious reasons, pay online. I had to go and buy a money order. My mother will testify to the fact that I am hopelessly confused by such matters, but I trudged along to the post office to make at least an attempt.
Standing in the lobby concentrating on filling out the paperwork, I wasn't paying much attention to more than my smudged black scribbles. It took quite an effort for strange men to get my attention - but they did - three different men over the course of ten minutes.
One said money orders, huh? in a jovial way and then repeated himself while I stared at him with a blank expression. The next man was wearing a knitted cap and had a cellphone in his hand. How are you today? he asked, twice, before noticing my baleful glare. The third fellow I tuned out like a confused housefly.
Why did these men talk to me? Strangers never talk to me unless they need directions or practical information. Literally never. I do not put out a come hither signal even when I used to run around half dressed. Nobody has ever flirted with me, and I really hope that nobody ever will.
Perhaps I have started to emit a different nonverbal message than normal; I hope that is not the case. If one aspect of my persona slips, what would be the next to go?
I'm downtown crossing the street and I hear someone calling to me loudly: "Hey! Jackass! Way to go!"
It might sound like a random, unsolicited, obnoxious comment (I am no stranger to such), but in reality it's an acquaintance congratulating me on having a song placed in a new hit movie called Jackass. Apparently the movie is based on an MTV show where the hosts do weird and dangerous stunts, like snort wasabi, roll down steep hills in shopping carts, etc. I say apparently because it's all second-hand for me - I've never seen the show or the movie.
We went to to have Easter with Stella and Al (after the offerings of the bunny were duly enjoyed by a pyjama clad small boy). It was an overcast day with bursts of light and we sat in the backyard and laughed and drank champagne. We met some new people with adorable small children and the day ambled along in a lovely way.
Around six we set off to pick up our daughter on the Kitsap Peninsula. Byron hadn't been through Shelton since we moved away in 1995. He expressed nostalgic fondness for the depressed, depressing little town. Seeing the place just made me feel ill. We lived there for a year because my grandmother was in hospice and our time was split between working, going to school, and driving deep into the county to watch my family self-destruct with grief.
I gripped my Easter bonnet and walked through the Red Apple market a few blocks from our old house. The place looks the same and my son rode the mechanical horse just like my daughter did all those years ago. The shelves and freezer units have not been updated; it is a perfectly preserved mid-century store, with the strange addition of organic snacks.
We drove around the downtown core, almost completely dead since a Wal-Mart moved in to the county. Byron pointed at a stately stone building and said I wonder what that is? and I replied without thinking The courthouse where my divorce finally went through and then blinked in surprise. Before that moment I had no conscious memory of such a thing, and couldn't have guessed if anyone inquired.
On the way out of town we passed what my daughter used to call the Pine Cone Tree Restaurant and I said turn here at the lumber yard, but Byron didn't believe me. I am notoriously bad at directions, spend much of my time lost, often can't even find my way across the hill I live on. But I was right.
After we got turned around and back on the right road we saw that the tide was out. I pointed out the mud flats to our son, who wasn't very interested, and we drove and drove until we reached the chainsaw art at Allyn. Byron suggested we take the turn and go the back way toward Key Center but I was tired and wanted to go home. The rest of the drive is grim, a tour of clear cuts and then Belfair. By that point my brain was feeling gelatinous from surging sad memories, and for everything that is the same (train bridges with graffiti) there are changes hard to assimilate (Gorst has overpasses).
I grew up in a forest. My parents still live in the same house but instead of trees, they are surrounded by acres of identical houses and strip malls.
We couldn't get a ferry because of the holiday and then sat in traffic waiting to cross the Tacoma Narrows for nearly an hour. The rest of I-5 was stop and go so we got off the road and Byron decided to try the back roads.
He pointed the car in a direction that made sense but I knew somehow he was wrong; the flickering memories told me that we had to find 6th, turn right, and push on - and as we drove I remembered events, and the places my friends lived, and the Youth Initiative offices, and the warehouse on the water.
Tacoma died a long time ago but diligent civic efforts are reviving the downtown core. Instead of prostitutes and junkies, we saw cafes and galleries and the new glass museum. We were on Stadium and I said I think this is the old highway but he discounted my ability to navigate and turned off on 509. We drove around the Tacoma waterways, the children gagging and complaining about the smell, and kept going endlessly into the darkness. When we reached Dash Point I started to laugh. I doubt we would have ever circumnavigated Pierce county and toured the furthest southern reaches of King on purpose. I know Byron has never been so deep in either.
Just keep going this way and we'll be back on the road I told you to take; up here a little ways there will be a donut shop I said. Sure enough, we found our way back to 99 and passed the donut shop I visited once in the middle of the night in 1986. I'm surprised and somewhat delighted to know that I have useful memories of how to get around, and that I now know how to get from my house to Tacoma the back way. Old roads are more fun and driving next to water and steep precipitous danger doesn't worry me.
The old Pacific Highway is still littered with funky hotels and neon signs and strip joints and we drove past the airport and Lewis and Clark bowling lanes and made it home around eleven.
It took five hours to make a two hour journey, but it might have taken that long if we had stayed on the interstate.
I took off my easter bonnet and crawled in bed.
Stevie Ray Vaughan appeared to me in a dream and asked what are you afraid of?
After much consideration I answered I'm afraid to tell you.
Today is the tenth anniversary of the FBI attack against the Branch Davidian compound in Waco Texas. Twenty-five children and fifty adult community members died.
This attack happened while the civil rights of our citizenry were not under siege.
The real tragedy of Waco and of Ruby Ridge was located not only in the loss of human life, but in the illegal tactics of the government.
Both of these horrible events directly inspired the all-American patriot and Gulf War veteran Timothy McVeigh. He came home from war with medals and a deep, ideological hatred for what he saw as the duplicity of the war effort. He planned and executed a full-scale terror attack in Oklahoma City precisely because he wanted to martyr himself to the cause of freedom.
One hundred and sixty-eight people died, including nineteen children. Six hundred people were injured.
Circular logic, service and consequence, dead babies on the television screen, death sentences decided and executed by armed agents and militiamen. The courts of our nation sentenced McVeigh for his crimes. Why didn't the courts have more say in what happened before Oklahoma City?
I'm honestly frightened when I remember these events and think about the fact that we are not having a national debate about homeland security and the concerted efforts to restrict our rights.
If our government and our more zealous citizens can become mired in deadly, horrific terrorist strife in a time of peace, what will happen if the government has even more power? What will happen if our rights are eroded even further?
On a moral level, the slaughter of innocents is reprehensible regardless of who pulls the trigger or plants the bomb. One act of violence leads to another inexorably, and the politics of the combatant become irrelevant.
History offers up simple lessons. Totalitarian regimes are bad. Poverty leads to violence. Societies that offer liberty and equality along with economic stability have lower rates of crime and higher rates of joy.
The only practical thing to do now is to continue to speak out against terror of all kinds; to remember and recite the Bill of Rights; to demand that our consitutional protections are honored. Civil rights and civil liberties define this democracy and we as citizens need to stand united and build coalitions across our political differences.
The phone rang at 10:31 and the caller id informed me that it was Gabriel. I surprised myself by picking up.
Hello Bee! What are you doing?
Nothing.... what's up?
I called to tell you the plumber is here and busily fixing the shower.
Yes, it's very handy, because the baby was born last night.
Gabriel Liston, master of the understatement.
Congratulations to Gabriel, Danielle, the girls, the grandparents, the friends, the neighborhood! Hurray for joy and tiny people.
If you want to congratulate the lovely family you can find them via:
During the trip we left our twelve year old daughter with her best friend. They talked, watched movies, went on excursions, and visited the park.
At the park a baby squirrel took notice of my child and followed her around. When the girls tried to leave, the squirrel followed, and scampered up their legs.
They claim the squirrel followed them home.
When I arrived to pick my daughter up, she was cupping something in her hand. She was excited and called me over to look. When I saw tiny black eyes peeping out of her hands I gasped and stepped back.
I grew up in a forest. It was always extremely clear that the wild animals wandering around were not to be petted, let alone adopted and brought home. Woodland creatures carry diseases. Even if they occasionally need help (I once cared for a damaged duck), they are not pets.
My daughter started to cry when I told her she would have to let the squirrel go home to the park. She insisted that we take it to an animal shelter; I told her the squirrel had a better chance in a tree.
By the time I showed up, she had been canoodling with the animal for two whole days. Even after I told her that she couldn't keep it, she held on for hours, sitting on the porch with the squirrel curled up on her chest. Reliable witnesses told me the creature had scampered through her sweatshirt.
I am entirely comfortable being the mean mother when it comes to health issues. I force my children to wear sunblock and refuse to let them eat nasty junk food. The squirrel had to go, no matter how cute it was, no matter that my daughter was certain she had a metaphysical bond with the animal.
We waved goodbye to our friends. Gabriel put the shoebox containing the squirrel out of reach of the little kids and promised to give it to Angie for expert repatriation.
Back at home, my daughter revealed that her arms were covered with red welts. She said they were flea bites but whatever the rash might be, it was spreading and swelling.
Byron called for advice and the nurse laughed and said that squirrels do not fraternize with humans; our daughter might have anything from an allergic reaction to the black plague. The doctor at the childrens hospital verified this diagnosis, while giggling. They told us to feed her anti-histamines and dial 911 if anything scary happened.
Gabriel and Danielle are having a baby and it will presumably show up any day now. They shake their heads in exasperation at all the names people keep suggesting. I think they should name it Buck. Or maybe Rifle. To reflect their Colorado antecedents.
During the baby shower various people started to work out a plan to help when labor starts and after the baby is born. They made a list of who can take over care of the three existing kids; who will show up with hot food; what kind of food might be most appreciated.
The next day, at a brunch, more people added their names to that list and then the conversation turned to birth stories. The women shared their interesting, funny, and sometimes alarming experiences. I smiled and nodded and then moved to leave the room. My daughter was sitting on a high stool listening and she stopped me. Mommy, tell them about when you had me, she said.
I shook my head. Talking about my birth experiences destroys the mood of a celebration. I can't extract a funny anecdote from the entirely grim stories. I replied I was sick; it was difficult.
She persisted. Come on, there must be something.
But there isn't, not really, so I talked a little about food cravings (I desired watermelon) and told the story of how she picked up her head and looked around, new to the world and imperious.
I ricocheted around the house, admiring the work they've done to make the place their home. Stevie Ann helped me paint the living room creamsicle orange and the foyer hot pink and they have left those colors alone but it looks entirely different. Gabriel and Danielle painted the former study yellow, reclaimed more space on the second floor, took the boards off the basement windows. All of their furniture and art and the clutter of the girls makes the place seem somehow more cozy and inviting than when we lived there.
My friends were talking in clusters all over the house and yard but each time I dropped into a conversation, it seemed to be either about the grim school situation (which I predicted would be a disaster and thus do not wish to discuss at length) or planning ways to help the little family.
I miss Portland. Especially while visiting.
It is possible to be a charismatic leader and guide an organization through financial problems. It is possible to be a good fiscal manager and lack people skills.
But if you are both a bad manager and incompetent, your employees and constituents notice:
After weeks of financial controversy and a recent no-confidence vote by teachers, Seattle School Superintendent Joseph Olchefske says he plans to step down.
We picked up Marisa and EB and cast off into the city, trying to find a place to eat and totally unable to imagine where that place might be. The Montage was rejected as too much of a scene, and then I remembered the Delta. When we lived in S.E., the Delta was on our bus route. There were only eight tables, all the food was under $5, and we could convince the girl child to eat cornbread (at the time, she normally only ate white food).
We drove up McLaughlin laughing and joking. Last year we realized that Marisa had never heard the song that goes Brandy, you're a fine girl.... what a good wife you would be.... but my life, my love and my lady is the sea.... and ever since we've been quizzing her to see what else is missing from the repetoire.
She knows all the Gordon Lightfoot and Tom T. Hall and a vast array of eclectic and popular music. But she claims never to have heard songs that play every third minute on the radio, like Late December back in '63, what a very special time for me....
I suggested that the Dolly Ranchers should cover the Bob Seger tune Night Moves: I used her, she used me, neither one cared.... we were getting our share.... They were invited to play at the Michigan Womyn's Festival; that would be a great place to debut the rendition.
We had no idea that the Delta had changed so much. It has expanded three times and is now both huge and hugely popular, with live music and cocktails. We put our name on the list and repaired to the Lutz.
We settled into a booth and caught up on news and I noticed that there was a poster next to the phone booth (a real old school phone booth - and not mangy) for a Delgados show.
In the middle of our move to Seattle, when all of our stuff was about to go into storage, the Delgados wrote to James and asked if they could use one of his pieces for the album cover. He said yes; the only trouble was that all of his prints are in storage in Oklahoma and he lives in Tokyo. I was floating up and down the I-5 corridor preparing my move but had to dig the print out of deep storage and travel with it, wrapped for shipping, until a courier could find me at a random hotel, arranged via middle of the night phone calls with label publicists in the UK and New York. The whole proposition was sketchy at best, and I didn't really expect the art to come back from England.
But the print wandered off and much later wandered back, and now I see posters for the album Hate all over the place. Featuring a photograph created in my basement in Portland and hanging on my wall in Seattle. It is rather strange, in the sense that I recall being a teenager with James and visiting all the same record stores, and neither of us aspired to have that slightly discordant experience of seeing a piece of work mass produced on this scale.
James was supposed to send me the cd but he claims to have trouble with postal situations in Japan. He didn't bring it with him on a recent visit. I'm considering buying it - the reviews have been really good.
Cosmic rays? Nuclear fallout? Mysterious atmospheric events?
The willingness with which our young people are likely to serve in any war, no matter how justified, shall be directly proportional to how they perceive the veterans of earlier wars were treated and appreciated by their nation.
The reason for our trip was practical: we had to go to Portland because we are incredibly lazy when it comes to accounting practices. I keep all of my business receipts in a paper grocery bag until the last possible second. We forget that we are supposed to contribute money to certain kinds of retirement accounts. We go to see the tax guy with perhaps half of the paperwork we need related to our houses and income.
On the way to Portland I had a stack of envelopes and all of my receipts and I collated the piles and did the addition with my ancient solar calculator. It was a bright sunny day but I didn't look up from the task (except to eat at the fabulous Exit 88 Indian restaurant: don't be afraid, just believe) until we crossed the Columbia and zoomed toward the city.
Luckily, Chloe introduced us to a man who prepares taxes for arts and entertainment clients. He has signed pictures of Tom Poston, Joel Gray, The Brothers Karamazov, and various traveling Broadway shows on his walls. He is used to dealing with sensitive, scattered people and every year he patiently guides us through the process, sending us away with assignments.
This year was worse than any other; we had three residences in two states, moving expenses, we purchased one house and refinanced another. Both of our houses were at various points rental properties and subject to depreciation. We lived half the year in a state with an income tax. During the meeting we both looked intelligent and keen but the information rolled off our heads like water off a duck.
The tax man sighed at us. We sang the Schoolhouse Rock tax song to charm him. He gave us the same lecture we receive every year. I nodded and took notes. We left his office with a long list of forms to fill out or acquire.
We quivered with the pain of it all and bought ice cream to soothe our nerves.
Being in Portland is like playing a game of roulette with sadness as the prize. You don't know where the ball will land, but you do know it will end up in a slot. No matter where we went today, something was wrong. Lots of people were upset about current events or the economy. Others were in the middle of break-ups, or custody battles, or dealing with poorly managed schools. The few people feeling relatively happy were hard to reach and then annoyed at lengthy phone tag. A couple of my dearest friends are still mad at me for moving.
One friend shared that she has been depressed and spending a lot of time at strip clubs; she said that one day, a stripper bent over and everyone could see tissue stuck in her rear.
Keith from Half and Half was having a garage sale but we rolled in late, near closing, because I didn't really believe he would sell his good stuff. I was very sad to hear that he had sold all of his taxidermy and a vast array of brilliant objects. I managed to snag his dental plate collection, a pickled shark, and the complete Lessons in Taxidermy series, but felt ill at the thought of all the beautiful things bought by strangers.
The saddest part of the whole thing so far is also the happiest - spending time with the people I love. We didn't know Marisa would be around but she came home from tour just as we arrived. We went to the 19th Street house and embraced Stevie Ann and Erin Scarum. Sts was wandering around drinking Thera-Flu. Anna Ruby played the accordion and I nestled in her sleeping alcove. I fell into a nostalgic reverie and wished that my life could be arranged in such a way that I did not have to choose between landscape and these friends.
When we moved for Byron's new job the company gave us a relocation package that included several mildly alarming benefits (I did not enjoy watching the movers wad up my posters and shove them in a box).
One of the nifty bonuses is two free trips home. The company pays transportation, puts us up in a fancy hotel, and gives us $100 a day for food.
Today we checked into the Hotel Lucia in downtown Portland. The hotel features employees in charcoal gray tunics, big chunky couches, and chess sets in the lobby.
On the way up to our room, a photograph of Ansel Adams sticking his fingers through his glasses confused me. Elevators usually have placards celebrating area restaurants.
When I stepped off the elevator I was confronted with a picture of Rumsfeld and Kissinger canoodling with geishas. Walking down the hallway I stared with marked dismay at a series of large black and white prints of various Republican leaders, mixed in with photographs of the cast of Seinfeld.
The picture facing the door of my room was the penultimate horror, an image of the most recent Republican nomination being accepted.
The room itself is swanky, the bedding fluffy, the colors muted. The view from the ninth floor is a vista extending past the Travel by Train sign at Union Station, a glimpse of the warehouse district where I used to have an office, and our other old haunts in North Portland.
Fancy hotels are always a shock. I never understand why they are worth the cost; the only difference between the ultimate luxury accomodation and a discount chain is found in the bathroom. Essentially, it all comes down to the bath products. I fondled the tiny bottles of Aveda and thought of all the other free trips I've taken over the years.
Last year I was working on a large writing project that looked like a book; it was grim and somewhat beautiful. It was also stored intact without backup on a laptop computer that was stolen from my house one sunny afternoon.
I was so upset about the loss of the manuscript that I didn't have an immediate ability to talk about it. I didn't tell anyone until weeks later, when Marisa asked me how much of my work was lost.
Because I was already conflicted about the story I was writing, I decided that it was better not to grieve or try to reconstruct the loss. I took it as some kind of cosmic warning, as fate. I salvaged several sections that had been printed and shoved the other notes and edits in a drawer. I started to publish the zine series and turned the story of the robbery into a funny anecdote; Stella and Al and Marisa were the only people who insisted on knowing that the anecdote was very sad.
I kept writing and revising but at the same time believed that I should abandon the lost work. It seemed like a clear directive, and even my atheist brain tends to listen to the universe.
But last month I received a letter from a police department in another state. They had my computer, I just needed to pick it up. Gabriel drove down with a notarized paper and the computer is waiting for me in the Portland house.
I still believe that I should abandon the project. But something seems to be conspiring against me.
Yesterday I received email from David, a long-lost friend. I met him at a leadership training session when I was seventeen. The car accident happened three days after the training ended. Instead of keeping a journal, I wrote letters to David and another fellow from the training - compulsive, crazy letters, scrawling with my left hand or typing with one finger. I didn't talk to my friends, refused to reveal myself to the psychiatrist. I just wrote letters.
David had similar interests in terms of movies, music, and activism. I liked him a lot and our friendship would have been fun and sustainable, like the friendships I have with Gabriel and a host of other people, if not for the accident. David became an important person in my life because he was the repository for my grief. The people who loved me more intensely would not listen, had no capacity to understand. David came to my high school graduation. He drove up from California for my first wedding. Then as my life steadied, he faded away. I assumed that I would never have a grown-up friendship with him, though we saw each other occasionally.
I feel awkward around people from that time in my life. I did not enjoy being seventeen. Eighteen, nineteen, and twenty offered only minor improvements. The friends I have now are people I met before or after those years.
David wrote email yesterday to say he saved my letters in case I wrote a memoir; he asked, would you like them back?
I said yes please and we caught up on gossip about mutual friends.
I'm not sure that I want to read what I wrote fifteen years ago. But I suppose I have to.
The histology report from the biopsy came in a voice mail message:
In other words, benign. To be quite clear: not cancer.
This is one of the strangest things that has happened recently. I have never in my entire adult life had a negative biopsy.
The Decadent Australian (aka "Andy") came to visit for the weekend. He brought a wonderful surprise - he has a nice new girlfriend named Ren. We wandered around town, had dinner with colleagues and drinks at the Nitelite. They listened to me ranting about the fact that the government bases cancer cluster studies solely on the collection of mortality data, without collecting incidence data. We had a really nice time, and watched the new couple canoodling. I think Andy may have lost his nickname; he didn't seem at all decadent during this visit.
On the way to a French restaurant for breakfast with Ren's law school friends everyone made fun of my Bee Chip hyperactive nerves. I narrate every green light, red light, the speed limit, and whatever other rule of the road seems necessary. I've memorized the pamphlet, and even slight infractions generate comment.
We were on Western with our left turn signal flashing, no cars coming toward us, in the middle of turning, when a car came barreling down the hill and decided to pass. He slammed into our rear left door. Where the attorney was sitting.
The damage to both cars was minimal, but the driver of the other car was angry and started a debate about who was at fault. I walked around, evaluated the damage, and waved my hand dismissively. The man suggested that we not report the accident; he said we could pay for his damages. I got back in the car and put my hand over my eyes while Byron exchanged information.
Even if we hadn't had an attorney in the car, there is no way I would ever agree verbally to do anything where liability is disputed. I learned through lengthy training to keep my mouth shut in all legal matters.
I was upset all day, and my neck was injured. Byron was hurt too and the breakfast conversation devolved into a discussion of back injuries and treatments. After breakfast we went to see the view from the office of one of the women. I don't think that hanging out in a law firm was a good therapeutic choice. It just reminded me of the five years of depositions, talks, and litigation before the settlement of my accident.
Later Ren pointed out an article in the newest Rolling Stone that picked Volvo 240 series cars as a cool phenomenon. I hope the article doesn't start a fad. It is already hard enough to find decent 240 cars to buy when ours wear out.
We said goodbye to our nice guests and went down to the lake. It took an hour of walking and conversation before I felt even slightly better.
I go to extraordinary lengths to be appropriate, cautious, follow rules, avoid risk. But even in this life I've created, there are accidents. Safety is ephemeral, perhaps impossible.
After the biopsy I was moody and irritable; my mind was tangled up with memories of mean high school teachers and abstract thoughts about prejudice. I bought a burrito at Villa Victoria and drove around for awhile brooding.
That evening I started dinner, listened to the children chattering, and greeted my lovely husband when he came home from work. It was a perfectly normal day. The biopsy was not difficult, or scary, or painful. But precisely because I was not upset, I started to ponder other parts of the illness experience, beyond the political aspects I usually choose to think about.
Byron, I asked, why don't I ever get any sympathy when I'm sick?
He sighed. This conversation has become routine. Well, Bee, probably because you don't tell anyone when there is something wrong.
But even when I do tell people, they either don't pay attention or don't do anything.
He shrugged. You don't want that kind of attention. People see you as strong. Sympathy is a reflection of weakness.
But what if I want support?
Yes I do.
You can't handle it.
Yes I can! Tell me what to do. I need training.
Okay, but you won't like it. The first step is telling someone what happened today. Not through an essay. You have to talk to one of your friends.
I grimaced. Ugh.
He laughed at me. See? The next step is to admit that you have a problem, and listen to a friend express concern.
I turned back to the stove. Never mind. Let's just plan our next excursion. Did you tell anyone we are visiting?
He left the room for a minute and came back with the list of Portland phone numbers. He picked up the phone and dialed. Hello? Anna Ruby?....
The conversation went on at great length, catching up on two seasons apart. Anna Ruby has been in Europe, we have a new life in Seattle. Byron told stories about the children and work. Then AR passed the phone to Stevie Ann.
Stevie has gone as my date to weddings and events; she was our roadie on the Breeder tour; she has slept on the floor at my aunts house and sweet-talked free tickets to the rodeo at the county fair; she has been my insomniac companion and good true friend. She also just celebrated the first anniversary of the day the car ran over her body. Stevie is one of the only people in my life who can discern the truth behind whatever I'm willing to talk about.
I wanted to talk to Stevie. I haven't seen her since last summer. But I don't use the telephone. Not as a philisophical choice, but because it scares me. I never know what people really mean unless I can see their faces and the way they hold their bodies; the telephone allows people to dissemble, divert, prevaricate, and lie.
Byron laughed and talked and caught up on the news that Erin Scarum got a job searching the desert for bits of the space shuttle. Then he said She is right here; you wanna talk to her? and held the phone out to me.
I glared at him but took the receiver. I shouldn't have asked him for guidance; I should have known he would challenge me to act on the advice.
Hello? So, uh, I had a biopsy today and I was just lamenting the fact that I never get sympathy.....
Just in case you missed it:
After gaining 22 million jobs in eight years, we've now lost two million jobs in the last two years since President Bush took office Ð 100,000 jobs lost last month alone.
Two years ago, the federal budget was in surplus. Now, this administration's policies will produce massive deficits of over a trillion dollars over the next decade.
These policies have powerful and painful consequences. States and cities now face our worst budget crises since World War II. We're being forced to cut vital services from police to fire to health care -- and many are being forced to raise taxes. We need a White House that understands the challenges our communities and people are facing across America.
Yesterday when the kids got off the bus my daughter said Why do you have a bandage on your face?
I shrugged. Biopsy.
They made sympathetic sighing noises and said Poor mommy and then launched into the reports about their day, plans, games, requests to go buy spray paint and visit a toy store.
Later, while I was making dinner, my six year old son came into the kitchen and looked at me. He pointed at my face. That detracts from your prettiness, he said.
I laughed and replied Don't worry, it will heal soon.
My adventures with chronic illness started before I was old enough to walk. The cancer was diagnosed on my twelfth birthday. I've never concerned myself with questions of beauty; I wasn't properly socialized. I never learned to care about the horror that raged in the hearts of other teenage girls. How could I attend to normal worries about appearance when my jaw was wired shut, my skin greenish-blue, my stomach ulcerated, my kidneys inflamed with a persistent strep infection, my torso lacerated with scars? It was hard enough to stay upright most of the time.
I was never the Molly Ringwald character from Sixteen Candles. I was always the Joan Cusack character in a neck brace, unable to get a drink of water from the fountain without using her shirt as a bib.
There is a huge benefit to growing up the way I did. I learned to be tough, and I learned the enervating effects of confidence. Precisely because I was so far outside the boundaries of the normative teen experience, I walked out of those years without any destructive ideas about how I look.
I don't know how I look, only how I feel. I don't know how other people look; I missed the training sessions on how to discern the difference, deconstruct the social truth. When other people talk about crushes or say that so-and-so is cute, I stare blankly. I cannot recall ever thinking someone was handsome, or beautiful, or sexy, or any of the shorthand phrases for superficial attraction.
I walk through the world with pristine confidence and a complete lack of concern about appearance. I'm not arrogant. I just don't care. I wear the clothes I like, for myself; everything about my appearance is calculated but there is no audience beyond my own desire.
I had a biopsy this morning. Only a small one; a piece of skin sliced off my face, just below my left eye. The doctor complimented me on my nice scars - so faded, so flat. We chatted about treatment options and the research studies and the fact that new drugs are often promoted by doctors employed by pharmeceutical companies.
When I was young, I had a standing monthly appointment for this procedure. The doctor had a special knife set aside for my skin. Every four weeks, he cut two dozen cancerous lesions off my torso (and sometimes face). The limit was set at two dozen because that was the extent of my pain threshold. I could handle more now, but the disease has slowed down.
After each of those early appointments, I went back to school. I couldn't afford to miss a whole day.
Since 1973 it has been illegal, under Section 504 of the Rehabilitation Act, to discriminate against children with disabilities. We have the right under federal law to free appropriate public education, and access to all programs and services. For me as a child with a severe illness, this should have meant that I received reasonable accomodations such as flexibility in attendance standards, and at least minimal cooperation from teachers and administrators in establishing a plan by which I could have received the same quality of education as my peers.
Instead, I was punished for poor attendance; my grades were reduced by degree if I missed more than a certain number of days in a trimester. It was not unusual at midterm to receive a grade report saying A/C or worse yet A/F. Translation: perfect work, points off for each missed day. I was denied access to the elevators in the school even though, because of my drastically ill health, I could not cross the campus within the five-minute passing period. Because of my absenteeism and sluggish pace, by district policy, I was considered a truant and thus not allowed to make up missed tests unless a particular teacher was sympathetic to my request. Notes from my physicians and mother made no difference; the school administration did not recognize the authority of external professionals.
Because my grades were arbitrarily suppressed, and in part because of my absenteeism, I was denied entry to the honors programs. At that point my stoicism turned to rage and I took a tape recorder to my next advisory meeting. I recorded my guidance counselor as he droned on about my character; he told me I was exagerating, lying, that I was an annoyance and bother.
I said thank you and took the tape to the district superintendent. I offered to play it for him. He blinked and told me that it was illegal to do covert taping. I smiled and handed him a copy of the Rehabilitation Act.
He leaned back in his leather swivel chair and sighed. What do you want?
My demands were simple: I wanted to be like the other kids. I wanted to take hard classes and hard tests. I wanted to be allowed to compete. Oh, and a little bit of revenge; I wanted a different guidance counselor and a disciplinary action against the mean little man who called me a liar.
The superintendent nodded. That was my first victory. But I want to be extremely clear: it took the threat of a lawsuit to gain access to the classes I should have been enrolled in automatically. The simple existence of the federal law protecting my rights did not mean that I was safe.
I was a voracious, insatiable student. The honors program was my life; I loved reading and writing and history and debate, independent projects, endless hours of study. I took more AP tests than my peers and scored high enough to convert the tests to a year of college credit.
These were the facts of my daily life: I had two different kinds of cancer and a rare genetic disorder. My immune system was suppressed to the extent that I had bronchitis and viruses all the time. I had a host of minor, strange symptoms like a tendency to turn blue and fall over. I had a car accident that thoroughly destroyed the last vestiges of my health, and during my senior year, my right arm was in a cast. That didn't stop me from doing anything except tying my own shoes. I went to school every day I could, took on more work than any of my friends, learned to type and write with my left hand, was even a teachers assistant in the photography lab. For two hours each day I held my injured arm above my head as I mixed chemicals and taught students how to print.
But I never overcame the district policies on attendance, my grade point average was never corrected, and I almost didn't graduate from high school because I missed six days in the final trimester due to pneumonia.
I was accepted to college as an early admission, affirmative action student. I qualified for the affirmative action program because I was a first-generation college student, the only person in my family to make that leap. I was also local; the legislature required that state schools give preference to people with residency. I competed for a merit-based cultural diversity scholarship and won in part because of my family history but mostly because of my disability status.
I confronted and lurched over many illegal barriers on my path to higher education; but the critical, fundamental truth is that I would not have been able to achieve my goal if not for affirmative action.
Knowing what I do about the challenges for students who live in poverty, and students with disabilities, I have to extrapolate and grasp the fact that other people in different situations face severe discrimination. I have white skin. English is my first language. I can walk, talk, see, hear, breathe. In other words, I can pass. The hindrances I faced were minimal when compared to many other people protected by anti-discrimination policies.
I'm a perfect bootstrap success story. I came from nothing and made something. I finished my undergraduate degree in less than three years, became a single parent, and still rolled out of graduate school with a masters at age twenty-two. I was sickly, impoverished, a mother, and I had a job waiting for me when I finished school. I owe it all to affirmative action.
Some of the criticisms of affirmative action focus on the fact that quota systems are as biased as the problems they attempt to remedy. I think that people who try to debate that point are, honestly, delusional. They willfully ignore the fact that institutional segregation is real; that many students are diverted from success so early, it can take a lifetime to recover; that the playing field is still held by the people who own the horses.
There is at least minor validity in saying that those lucky people who grow up middle-class in good school districts might not need extra help (though I doubt that is verifiably true). But those people do not represent the vast numbers of impoverished youth trying to improve their situation; the refugees who come to this country in hopes of a better life; the students with disabilities who simply ask to sit at the same table as everyone else.
The fundamental need for affirmative action has not disapeared, and with a looming economic crisis and cuts to education, the situation honestly does not call for optimism.
I had a biopsy on my face today, and thought about the years of struggle and fighting, and wished once again that I had been allowed to retain the grades I earned. That would have been enough for me; all I ever wanted was a fair chance.
I have a hidden agenda behind all of my comments about the war.
I was diagnosed with post traumatic stress disorder in 1988. The disorder is unique to those who survive devastation such as war, disaster, extreme abuse; I was diagnosed in the midst of crisis following a horrific car accident. PTSD is considered to be a psychological disorder but the symptoms derive from physiological and neurological changes. Actual differences in the structure of the brain can be observed, along with fluctuating hormonal levels, cortisol levels, and other verifiable (and incurable) physical differences.
Those of us with clinical PTSD may have a host of symptoms, but some of the most common are hyper-sensitivity of the central nervous system, a hyperactive startle reflex, and sleep disorders including nightmares and insomnia. There are many other psychiatric disorders that are found alongside this primary diagnosis, sometimes as subordinate soothing habits, sometimes as an effort to self-medicate.
For me, personally, every day, PTSD means that if my children toss a ball for me to catch, I have a flashback. I cannot stand to have anyone touch my face or move toward me too fast; I strike a defensive posture before I can think about it, even if the potential threat is no more severe than a frisbee flying across a park.
My whole body jerks if there is a loud sound or crash in my vicinity. I expect danger everywhere. I have a series of pristine phobias that I have never been able to conquer, including an aversion to talking on the telephone and an obsessive need to wear black shoes. I work very hard to make other people think that these traits are quirky but in fact, it is extremely painful to have compulsive, controlling habits, even when those needs are expressed with attention to clothes and accesories. I am literally unable to leave my house unless I am dressed in a very specific kind of costume and fully made up.
It would be accurate to say that I have not been asleep since 1988: the sleep of the innocent, the sleep of the pure. If I do fall asleep after reviewing every single bad thing that has happened in my day, every social slight, every imperceptible difficulty, it is only to drift in a miasma of anxiety and startle awake over and over, checking to see if the house is on fire, if there is an intruder. I do not have nightmares but my dreams take the form of administrative details, rehearsal of control. Lately I wake up every hour on the hour, walk around the house, and go back to bed for a fitful rest. I am always tired but always coasting on nervous energy, a strange combination.
Life is not unrelieved misery, but the disorder is part of every moment of my life. I literally hum with anxiety; my friends find it charming. In Portland lots of people made a game of humming back at me. The children call my startle reflex The Bee Chip and make elaborate jokes about upgrading my operating system.
The doctors talk about psychosocial deficits related to this disorder. In other words, people with PTSD are often either assholes or totally lacking in some significant ability to live in civilized society. I'm somewhere in between; many people think that I am scary but that is because of my strong defensiveness, my cloistered emotional reserve.
If I'm careful not to push myself too hard, I am fine. But that is a position of privilege; my life is structured to accomodate the disorder. The opposite would never be true; the world makes no excuses for twitchy confusion. People with PTSD who find themselves in a daily dance with external stress can become monstrous, self-immolating. I am lucky that I can work from home, that I have supportive friends and a loving family. I am lucky that I have access to high-quality health care and a vast array of alternative resources. I am lucky that I can find redemption in literature, music, walking next to the water, looking at the mountains, playing with my children.
Yet at the same time, I need constant reassurance, repetetive confirmation, that life is good. I ask a series of questions over and over again that revolve around simple obvious truths; I can know devotion and tenderness and yet at the same time not be sure, because my mind was once fractured.
I am lucky that my accident was absolutely not my fault; that no matter how much I think and wonder and worry, the truth is that my primary tragedy was just a stroke of fate. If I had chosen the action, the weight of the disorder would have been too heavy.
If you clear aside the ideological debates about the war, the abstract concepts, and pay attention to the simple facts, it is almost too painful to think about. My bias is that I honestly, passionately do not want anyone else under any circumstances to deal with PTSD; and if a conflict is avoidable, if other options might work, my support goes to those other options. Understanding the consequences of war should be central to the decision to send troops into conflict. There is a moral imperative to understand the fundamental reality:
It is not enough to be against something - it is necessary to know what you are for. This is my political agenda: civil rights and constitutional protections; economic incentives to keep U.S. industries in this country; food, shelter, housing, health care, and funding for those programs; job training and education. I believe that there is enough popular support in this country for economic parity that a coordinated effort can bring about change.
From April 4 to 7 of this year, in commemoration of the death of Dr. King and in celebration of his legacy, United for Peace and Justice calls for nationally coordinated local antiwar actions to be organized throughout the country. We issue this call in cooperation with the Campus Anti-War Network, Citizen Works and Direct Action to Stop the War, which are all organizing nationwide protests during the same period.