About thirteen years ago I had a toothache but no dental insurance so I waited and pondered. When I finally achieved insured status through my state job I bustled off to get the tooth fixed; the dentist fiddled around with fillings and told me that I needed a night guard to stop grinding but insisted that there was nothing wrong. Right before I decided to quit I insisted that someone open up the tooth, and they found a massive horizontal crack. It needed a root canal and I used the last of my savings to pay for an enamel crown.
Two years passed and the tooth still hurt; the reasons were obscure but I had another root canal, paying for it out of pocket. They drilled through the crown and told me that the roots were impenetrable, that they didn't know how long the repair would last.
Ever since then I've been ignoring the fact that I can't eat ice cream or hot food. I've been chewing without touching that tooth. I've taught myself not to clench my jaw by keeping my tongue wedged between the molars.
All the while, the tooth has in fact hurt -- but I saw no point in pursuing the issue, figuring it would stop eventually.
Somewhere around my birthday my mother looked at me and said why is your face puffy? Have you gone to the dentist recently? and I hummed and stared off at a distant horizon.
But then recently a traveling accordion player was telling me about a problem with one of her teeth, and the hassles of having it fixed in the middle of a tour. I started to think about what might happen if my tooth goes septic while we are in Spain.
Which of course convinced me that it either did or did not hurt, depending on the moment.
This morning I started to call around to check on dentists suggested by friends and one of the nice people on the phone asked if I have pain currently. When I murmured an acknowledgment she said can you be here in half an hour? and I agreed.
I was confused by the office; I'm not used to the treatment doled out to people who have excellent insurance. I'm not used to luxurious private practices with massaging seats. I've spent too many long painful hours sitting in lines at public clinics with people who are bleeding to know exactly how to answer the kind questions of the nice people who ushered me to an exam room.
The hygienist was jovial as she set me up for the xray. When she saw the results she asked how long since the root canal?
Oh, seven years I replied.
You have had pain that entire time?
She was visibly shocked, and hurried out of the room to fetch the dentist.
There was a brief discussion and then I was escorted upstairs to see a specialist and arrange for an emergency root canal on my abscessed tooth.
Insurance is a wonderful thing.
A few months ago one of our friends turned to me and said do you remember the night the punks rioted on the ferry after a show at Natashas?
I blinked and nodded. I might have been at the show, but I certainly would not have been in attendance at the riot since those kids were headed toward Seattle and I lived way out on the peninsula.
My memories of being a teenager are dim at best, bracketed as they are with cancer and an accident. The real life, the friends and shows and adventures, recede. I have a box of ticket stubs and posters to prove to myself that I actually did go places, but the only thing I retain is a few random impressions. Skipping school to go to the city and watch plays. Lurking in the only school hallway without security cameras. Listening to KJET. Walking in the forest at night. Driving in the dark.
But although I had extraordinary bad luck I was never especially gloomy - I was in fact one of the most fiendishly optimistic people on the scene. I organized field trips, group dates, caravans. I circulated petitions and tutored in the grade schools. I acknowledged the need to build coalitions and conducted projects that gleefully used the resources of several church youth groups and the Sea Scouts, intoning my atheism along the way. I started a nonprofit. I did not fit in with the geeks or honors students, and I confused the underground elite with my relentless good work. I was, I am sure, quite annoying in my diligence.
The trouble with real life was the fact that I had to be exactly who I was. It was difficult to hide the fact that I had pneumonia and bronchitis every other month; that my hands were blue; that there were three hundred scars on my torso. I wanted to be more than the illness, without becoming a poster child to inspire others. I took the position that my cancer was not available for public consumption, and that I would preserve my privacy at any cost. Forget inspiration. I wanted to have fun.
My real social life took place elsewhere, via a post office box. I started my first zine in 1984 and later picked up an assortment of pen pals from all over the country and world. The identity I crafted through my zine and correspondence was like me, but different. I could talk about music and shows and movies and politics without ever being forced by circumstance to acknowledge the truth of my situation. I could tell whatever half-truth I preferred, could rehearse stories until they were shiny.
Music, zines, and letters were the only tools I had to crack the seal of isolation and illness. It is no exaggeration to say that I picked a new life because my pen pals informed me that I could. Kids are notoriously open to peer pressure; it was good I had someone to talk to other than the neighbor who nailed kittens to trees.
Eventually my life became integrated - I grew up, just like everyone else. But my inclination to maintain long distance friendships survived, and then the internet came along to facilitate the habit. Lots of people think that email has caused a slide in written communication, but as someone who never uses the phone and has always used mail, I disagree. Since almost everyone has email now I hear from more people than I ever did. There are certainly fewer letters written longhand, but the profusion of zines is astonishing. I get a new zine almost every single day -- whereas in my teen years I could look forward to one each month if I was lucky. Online communities and journals have multiplied communication to a level that would have been inconceivable way back in 1984.
I have always lived in the Pacific Northwest but I know people all over the world. I know someone in every single state and in every province of Canada. I have friends wherever I go, sometimes so many friends I can't even schedule time to see them all. When I think about my life in the abstract I do not place myself in whatever city is home-- I know that I could move away tomorrow and still have multitudes of friends, because no matter where I end up I could still write and read and send mail.
From the ACLU: Next week, the House will be voting on a backdoor attempt by anti-choice proponents to undermine the legal underpinnings of Roe v. Wade. This attempt -- a proposed bill promoted by anti-choice legislators and their allies -- would give a fetus separate rights distinct from the woman. Although its proponents claim this bill is meant to punish violence against women, they have rejected approaches that would have punished violence -- including violence that causes the loss of a pregnancy -- without creating new fetal rights. This unprecedented elevation of the status of a fetus in federal law erodes the very foundation of the right to choose abortion. It is no accident that anti-choice groups have drafted and circulated similar legislation all across the country. The proponents of this bill have built their careers around banning abortion. This clearly shows that their true intent is to undermine a woman's right to choose. Take Action! Stop Congress from rolling back key reproductive freedoms. Click here for more information and to send a free fax to your Members of Congress.
Muffy kindly reminded me that my personality type is ISTJ: The Reliant.
The first time I took this test was in grad school, and the instructor herded us to different quadrants of the room to visually represent how many people have a certain leadership style. Most everyone ended up in one corner. I was on the opposite side of the room not chatting with the only other person like me, some fellow who worked on wetlands projects.
I really have no argument with the test results. The only critical problem with the tool is that it reports a best case scenario composite description of the people who supposedly share the same personality traits. In the career and personal sections of the description I have to assume that others like me must have had carefree childhoods.
The description is accurate; yes, I am an extremely dull person. I believe in tradition, honor, all those boring concepts.
But I grew up in a lawless, impoverished place, with cancer and uncertainty ruling my life. I may have a cautious soul but it is in charge of cultivating radical pursuits. I may be a stereotypical middle manager but I found government work revolting -- it didn't agree with my high ethical standards. I do not wear sober clothing but I am one of the only people around who can saunter forth in completely scandalous clothes and sequined glasses and still maintain an aura of genteel respectability. My friends believe that I wear black all the time even though this is not true.
Growing up on the edge of society is instructive for people like me; we are not especially passionate but we believe that reform is inevitable. Plus we know how to make it happen.
Even in the most complicated circumstances - as a single mother, or recovering from cancer, or dealing with the death of my beloved grandmother, or all of those at once - I've always been able to work at full capacity. In fact, work has often been my only solace.
Last night I was talking to my daughter about the differences between her alternative school and the traditional school I went to at the same age. She was dismayed by some of the facts about the institutional structure, and as we talked I remembered being thirteen again. I remembered having dozens of cancerous lesions gouged from my torso during morning appointments and being dropped off for afternoon classes, the fresh wounds covered by turtlenecks.
If the surgeries required hospitalization I went back to school immediately after being released, sometimes with the hospital bracelet still on my wrist. I read textbooks straight through, not because they were interesting but because I had to work twice as hard as any of my peers in order to keep up. The disease was too fantastic to believe and some of the teachers took a malicious delight in labeling me a troublemaker, a hypochondriac. Class placement, grade point averages, missing tests that I was not allowed to take -- by age thirteen I was my own legal advocate, quoting federal laws at recalcitrant guidance staff.
If anyone had been kind to me I might have been a happier person, but the experience of institutional discrimination forced me to work hard and to become a political creature. I learned how to play by the rules, and how to force everyone else to play fairly. I took the judgment of stupid and demonstrated that a kid with a disability can in fact be a good student. I repudiated the judgment of liar by devoting my life to righteous causes. I met every challenge with cold precision, never missing a deadline, never giving anyone a chance to see me as vulnerable.
One example: during my first year of graduate school I was a single parent and commuted over a hundred miles a day to get to campus. My health insurance was about to disappear, and I had to get my final set of radioactive isotope scans. The preparation for testing included an oppressive regimen of going off the medication that keeps me alive and avoiding all iodine in foods. I couldn't take time off school because I would have forfeited my scholarship and work study job. By the time the tests happened I was only marginally competent, barely able to drive, too tired to stay awake. But I did in fact go to every single class and turn in every single assignment. I am not bragging when I say that I committed more time, and turned in better work, than half of my peers.
The week of the scans I had to fast and at that point I went to my seminar leader and asked for an extension on the final paper.
He said no. He said that I was taking advantage. He said that his brother died of cancer and it was morally repugnant of me to claim cancer as an excuse for not doing work. He said that if I couldn't do the work I should leave the program.
I looked him in the eye and said you are violating my civil rights and you will in fact accommodate me.
I walked out of his office and within days started the next phase of my life, doing campus governance, writing policy, pushing hard to make the school one of the first in the nation to truly meet the new legal standards set by the Americans with Disabilities Act. I finished the graduate degree on time, and was one of only two people allowed to do independent thesis research.
This is merely one example from an entire lifetime of fighting. But after relentless hard work and deliberate, direct action -- I don't have anything much to struggle against. I am safe. I am surrounded by people who deserve my respect. The trouble now is that work is so closely associated with struggle that I can't separate the two.
I feel like I'm dropping off a precipice if I can't make a deadline, even when there are pragmatic and reasonable obstacles in my path. I feel queasy if I'm ten minutes late to an appointment. I never set aside time for recreation or pleasure. I feel guilty about my love of celebrity gossip magazines and reruns of Bewitched. Even the books I read are part of whatever project I'm working on instead of something strictly enjoyable.
It is an alarming experience to give myself the slack I should have always had. I'm not sure that I like it, but I am also not the kind of person who creates drama to replicate the past. It was not fun to work that hard. I don't know how to have fun, but I think I should learn how to be calm.
I'm strangely, for the first time ever, free. But I am distinctly uneasy with this liberty.
The Dolly Ranchers (all five of them - they have a new accordion player!) were here this week, along with Erin Scarum and Stevie and a few other friends. Byron went to California, came back for about sixteen hours, and then went to Europe for the second time in two weeks. After the guests departed and I waved goodbye to my one true love at the airport it would have been nice to rest but now I'm on some kind of ultimate obstacle course challenge to take three kids to about nine parties in different quadrants of the city. Oh -- and finish writing a book that is at least nominally due tomorrow evening.
In short, I am a wee bit busy. There are 427 non-spam email messages waiting for my attention. If you are in that queue please pardon, I'll answer when I get a chance.
I know a huge number of smart people who make a deliberate choice not to vote. I comprehend their arguments and recognize that some people feel it is the most ethical decision. But setting aside the presidential election, there are a host of critical local and state issues to address.
When I hear people with strong political beliefs say they aren't going to vote at all -- it makes me remember how the fairies die in Peter Pan.
Slit offers some analysis of:
Today I refused to let my daughter spend her own money on a kitty collar. When she objected I reminded her that one of our dear little friends nearly died last week after a choking accident.
The girl glared and me and replied in a ringing voice you are such a Cassandra!
My published writing appears most often in books and quarterly journals. This means that there is often a long delay, sometimes years, between the time I finish a piece and when it shows up at a bookstore.
Until I saw the review last night I had no idea which essay had been accepted for the anthology. I had a vague idea of the content but my memory supplied no clues as to the form or title and I never really cared enough to ask.
Publisher's Weekly informs me that the essay is called The Theory of Maternal Impression.
When I wrote it I had an office in a warehouse on the river in Portland. I was still using the cranky old Linux machine for all of the site work; it didn't have a good text editor so most of my writing was stored on a laptop at the house.
One day while I was picking up the kids someone shimmied up the back of the house, knocked out the rear dormer window, and very efficiently made off with the piggybanks, cameras, and the laptop. Of course I had no backup of the files - an entire manuscript went missing that day.
The Theory of Maternal Impression was one small piece of that book, but was a rather tangential fragment. Losing the manuscript was a terrible experience but starting over from that point has been instructive, not only in practical terms (I make multiple backups of everything now) but also in understanding the story.
Publisher's Weekly said that my essay in Pills, Thrills, Chills, and Heartache is "....haunting .... about a terrible and rare cancer and the historical implications of being considered a freak..."
From Xerography Debt: A Beautiful Final Tribute- And lastly, let me introduce Bee Lavender, the most recent conqueror of my zine hardened heart. ABFT operates under what at first look is a clever gimmick- each issue incorporates the cover, title, and selected internal elements of a preexisting pamphlet (a guide to poisonous plants, a mailorder taxidermy lesson, etc) interpolating Bee's own autobiographical writings, but in truth, it is not a gimmick but a system; a way for Bee to examine the events of her tumultuous life through a variety of lenses. This gives her stories focus: learning to fight, battling cancer, young motherhood, being a freak, Bee takes it all on, clear eyed and fearless. This woman is oakroot strong, with a voice built for stories and a life full of them.
Congratulations to Androo Robinson of Cryptozoa for being recognized with the Utne Independent Press Award!
From the ACLU:
Despite an unprecedented public relations offensive by Attorney General Ashcroft and a veto threat from the White House, Congress is moving toward revising the Patriot Act's most dangerous provisions.
Buoyed by the groundswell of opposition -- more than 245 communities and 3 states have passed resolutions in opposition to the PATRIOT Act -- momentum is building for legislation that would correct PATRIOT Act provisions that allow for unwarranted investigations of personal records, authorize secret "sneak and peek" searches and roll back judicial oversight.
This corrective legislation -- the SAFE Act -- would not repeal commonsense provisions in the PATRIOT Act, but would instead revise those provisions that infringe on our civil liberties without making us any safer. Yet even this modest bill drew the wrath of Attorney General Ashcroft who falsely said that it would "make it even more difficult to mount an effective anti-terror campaign than it was before the Patriot Act was passed."
Take Action! Tell your Members of Congress to cosponsor the SAFE Act so we can be both safe and free.
Click here for more information and to send a free fax to your Members of Congress:
I was once lucky enough to be a member of the studio audience of the J.P. Patches show. My shiny little face appeard on television and I have a photograph of the clown holding my infant cousin.
I was thinking I might visit San Francisco next week but I just realized that some friends are coming here to check out housing prior to their relocation from Silicon Valley to the verdant hills of Seattle. Then just as they leave, the band arrives. Which in turn means that other friends will materialize from sundry nooks and crannies. Much fun will be had by all -- but I won't be able to jet off to San Francisco as planned. Many apologies to the SF friends who were expecting me. I promise to organize another trip soon.
Oh - and if you live anywhere on the west coast you should definitely check out a Dolly Ranchers show.
Gabriel dropped in for a visit and brought me a present discovered by Michelle-- a book from 1936 titled Hitch-Hiking with Jimmy Microbe. Chapter titles include such cunning gems as They Learn About Trench Mouth, Adventures in Mastoid Cave, Pimple Cottage, and The Diptheria Germs Are Punished. Anne came over and we made yellow curry for dinner and Gabriel showed us slides of his new work. He is painting a series of cairns.