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 the tooth needed a root canal and I used the last of my savings to pay for the crown.
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?
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?
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 x-ray. When she saw the results she asked How long since the root canal?
I said Oh, seven years. Maybe eight.
You’ve had pain that entire time? Constant pain?
She was visibly shocked, and hurried out of the room to fetch the dentist. Who diagnosed an abscess.
There was a brief discussion and then I was escorted upstairs to see a specialist for an emergency root canal.
Insurance is a wonderful thing.
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. Wanting to be someone else, somewhere else.
The trouble with real life was the fact that I had to be exactly who I was. 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 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 can still write and read and send mail.
According to a very annoying and largely pointless pop psychology quiz 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 actually have no argument with the test results; the description seems accurate. The 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.
It all falls apart in the career and personal sections of the description: I have to assume that others like me must have had carefree childhoods.
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. Not because I want to, but instead because I needed to survive.
I may be a stereotypical middle manager at heart 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 itchy turtlenecks.
If the surgeries required hospitalization I went back to school immediately, 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 school 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 on all the judgment, and demonstrated that a kid with a disability can in fact be a good student. I repudiated the charge 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. This involves an oppressive regimen of going off the medication that keeps me alive.
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 my request.
Then I walked out of his office and, within days, started the next phase of my life in campus governance. I started on an advisory committee but within months I was writing official school policy, pushing hard to make the institution 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. Before I turned in the final paper I had a full-time job working in the state capitol, and offers from DC.
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 an essay 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.
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:
…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.
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
The Diptheria Germs Are Punished
My friend Gayle just published a funny essay about her travails in obtaining author photographs. You know, the kind that appear on the jacket of a book.
When Ariel and I edited Breeder we had the advantage not only of living in the same city, but also of having a trained and MFA certified photographer taking a sabbatical in my basement. He spent most of his time shooting pictures of the detritus of my household, so why not a few shots of two writers? Seemed like an easy plan.
Twelve rolls of expensive film, dozens of costume changes, and many ponderous hours later, we learned that it was not going to be quite as breezy as we had hoped.
James is an excellent photographer but his normal subject matter does not include live humans. If we had been broken toys, distorted family vacation slides, mercenary training manuals, or airports, there would have been genius results from even a short session.
But instead we are wiggly, talkative, blinking people. Even setting aside issues about depth of focus, the contrasts in the clothes we were wearing, our differing heights and hair texture, we just could not coordinate looking good at the same time. When one of us had the pose and smile in place the other was gawking at the window, or wrinkling her nose, or adjusting a garment at just the wrong second.
In the end there were lots of excellent pictures of us separately, and a few truly amazing pictures of us talking to each other. But nothing that fit the requirements of the publisher. The expenses for film and development at a professional lab? Completely out of our pockets. Plus I felt bad infringing on James, even though he was living rent free in my house.
Next we tried having a friend shoot some rolls of casual pictures as we stood around admiring fall foliage. These shots ended up much the same; the best are good souvenirs and catch the camaraderie we share, but there was not a single image that worked for the specific requirements of the press.
Finally we went to the photobooth at Newberry’s. Our kids fed quarters to the bubble gum machine while we sat on the swiveling stool and zapped through a couple of bucks. We had decent photos within ten minutes – and in fact, we had at least a dozen to choose from, all of which worked perfectly for our purposes.
I am working on two books that will come out next year, and even though they are not finished, the issue of author photographs looms large. Particularly since one of my colleagues lives in a different state. At this point I’m partial to the idea of separate photobooth sessions – but maybe we should do something entirely different. What, I do not know. Perhaps we should be illustrated.
By the time we finished editing Breeder both of my wrists were thrashed. I literally could not turn the wheel on my Honda, which had a tendency to stop running in the rainy season anyway, and finally had to get rid of the thing.
Normally the money from the book advance would have gone to cover critical bills since we were a family living on a graduate stipend designed to support a single adult.
But while I was shuffling papers around Byron went to a conference in Texas and started dancing with these Swedes who offered him a job over the thumping beat of the music. They said he could live wherever and finish his PhD while drawing a salary – a deal that could not in fact have been any better. He accepted and when my book advance turned up I had already paid the overdue utility bills.
I petted my check for awhile and then set off to find a car with power steering. I located it parked on Hawthorne: a powder blue 1984 Volvo 240 with ski racks, wonky doors, and a dubious title. I haggled the guy down to fifty percent of his asking price and then drove home in the not-very-luxurious new ride with blue cloth seats.
One day during carpool my daughter slammed her hand in the door, gouging the skin completely off and breaking a finger. This would not have happened with the Honda; the door would have simply bounced open again.
The cloth seats figure prominently in this story because at some point during a picnic someone left a bag of recycling and garbage in my car without notifying me, and since I lacked a sense of smell the car was putrid before a passenger gasped and pointed out the problem.
From that point on we fondly referred to the vehicle as Skanky and I drove it with pleased affection until we were packing to move to Seattle. The week before we left I was running errands and turned a corner and the door that broke my daughter’s finger fell out of the frame with a loud clunk..
The car needed more investment in mechanical work than I originally spent on the vehicle. We debated the veracity of bringing it with us, but didn’t think it would actually survive the trip.
In the end we left the car parked next to our house, turned over the keys to the friends renting the place, and waved as we drove off in our (new to us) marginally less decrepit 1994 Volvo 240 station wagon.
Gabriel wrote this week to say that Skanky has suffered what might be the final illness.
I’m sending good wishes to the intrepid old car and the wildly optimistic people who are trying to get it running again.
I have a photograph of myself at age seventeen, snapped on a street corner in a small mountain town. The day was gray. I had a yellow paisley scarf holding my hair away from my face but the wind picked up strands, blowing locks of slippery blonde hair around and forward. In the picture I am looking steadily away toward the mountains. My eyes are fixed on an unknown horizon and my expression is solemn.
I showed this picture to some friends and many commented that I did not look seventeen, but rather much younger. Someone reflexively used the word beautiful. The photograph is technically proficient.
I look at the image and remember that day, that month, that year. The photograph shows the gash where my eyelid was split open, but otherwise gives away no secrets. The scar is hard to make out in a black and white print.
I do not have an impartial perspective. I look at the picture and remember that the scar was actually red and purple, with small flecks of glass working their way up from the depths of a cut meticulously repaired by a plastic surgeon.
I look at the picture and remember what it felt like to have a fractured cheekbone, to lose my sense of smell and part of my hearing and the ability to track text on a page. I remember the fact that my jaw was dislocated along with most of my ideas. I remember the headaches that turned my world red, the rage and fear that surged through my mind every day. I remember that everything tasted like blood.
Beautiful? Not then, not ever. I had already survived cancer and learned to keep secrets. The damage to my face turned a confused seventeen year old girl permanently away from any interest in physical beauty. I wanted to hide the shredded nerves and muscles and splintered bones. The horror of the event did not show on my face because I didn’t let anything show on my face.
The picture sitting on my desk gives away none of this. The picture does not even reveal the fact that my arm was still, seven months after the accident, in a plaster cast stretching from my knuckles to my shoulder. Other photographs over the years occasionally capture a different expression, but for the most part I still have the same solemn face of that young girl.
I look beyond the people in my immediate surroundings toward a horizon that is never clear. Beautiful? No; damaged, and determined. The truth is that I am not attractive by the standards of a larger society or even of the subculture I am generally aligned with. The reasons go beyond the fact of my scars, because of course some people find the scars interesting.
Before you rush to tell me otherwise, I want to be very clear. I do not believe in the idea of beauty. I do not know any beautiful people. I have never experienced the transient physical compulsion of a crush. I see everyone the way I see myself, as a complicated array of problems and secrets.
I wear what I like, eat what I like, go where I like, do what I like. I don’t care one bit what anyone thinks of my appearance, and I frown at compliments. I would never let anyone else determine the perimeter of my desires.
The only limitations I respect are those related to the fragile state of this body. Although I photograph well, most people find me rather frightening. Nobody has ever dared flirt with me. The people I have dated have all found their way to me by more direct methods. They are compelled less by appearance — because they do not have permission to care about something so superficial — than by the intensity of my beliefs.
If you can look at a picture of a smashed face and use the word beautiful then you are responding to something other than the features depicted. The only thing clearly conveyed by this picture is the fact that I was staring straight ahead.
If you can look at me and use that word then what you are really saying is more of a compliment to your own corporeal reality. If you see beauty where it is not present then you are in fact the beautiful one.
The Pacific Northwest Inlander offers this article about the child abuse scandal in the Catholic diocese of Spokane: Sins of the Father.
This story is important for many reasons, not least of which is the fact that many of the people who were victimized are still not talking. The cultural stigma of rape and sexual abuse often silences the people who need the most help.
When abuse happens in the context of a family or institution the level of denial is extraordinary – people do not want to believe that it can happen. Boys and men are particularly vulnerable because they are not given permission to admit that they were hurt, that they could not defend themselves and their friends.
One of the men who came forward in Spokane remembers I began to create a world in which I could live alone and let no one else in.
We need to protect children, and prevent future abuses through systematic structural activism. But we also need to untangle the damage of the past.
We need to acknowledge that these men are telling the truth. We need to thank them for their brave and honorable choice to come forward. We need to pay attention to the people who are willing to speak out about abuse, and categorically welcome those stories, no matter how difficult it is to listen.
This weekend we walked on the beach at Alki, just before sunset, during low tide. It seemed like all color had been washed away, leaving only the gray of the water and sky and sand. The Olympics seemed to float, the foothills obscured by fog, and downtown refused to sparkle. I watched the ferries go back and forth and decided that I know too many secrets.
We headed home early because the roads were icy, with entire sections of I-5 between Fort Lewis and Lacey quite slippery and frightening. Or rather, I was scared. Byron learned to drive in Colorado. He listened to his old warped cassette tapes and hummed happily. The rest of us went for defensive sleeping.
Snow is such a rare experience in these parts I can remember no more than a dozen storms. I’m excited that there may be more snow tonight.
Back at home the children sculpted a snow kitten and named it Skid Bladnur.
Later this month I turn thirty-three, followed by our eighth wedding anniversary.
When we lived in Portland I always threw myself a party and an astonishing number of people would show up. Like most of my parties, I often did not know most of the guests.
I used to think the parties took the edge off the persistent existential crisis of the event which is not just my birthday but also the anniversary of being diagnosed with cancer – the darkest part of the year – but it never actually worked. I just ended up with more cleaning chores and a deeper confusion about the experience of friendship.
Other people born this week have always told me that I should give up the parties completely. They try to hide the fact of their birth date or quietly resist celebrations. I have decided those friends were right all along. Winter is depressing.
So I’ll turn thirty-three and tell a few funny stories about birthdays in the past. But the existential crisis will have to fulminate without the benefit of guests to distract me.
I’ve also decided to move my wedding anniversary. It is an arbitrary marker of a legal contract. I think we’ll push the date back to May and recognize the anniversary of moving to Seattle instead.
I am a winter child. I never make New Year resolutions.
One year ago today I was almost thirty-two and the thing I wanted most in the world was a new agent. Concerted efforts did not yield a result; instead, I sold two book proposals for nonfiction projects without benefit of professional assistance.
I decided to abandon another book, too dismal to contemplate, about danger and safety and having cancer as a child.
I was healthier and stronger than I had been in five years – but then ended up in the hospital, and emergency surgery, another much-delayed result of the disease that nearly killed me at age twelve.
Upon being released from the hospital I decided not to do one of the nonfiction books, but then finished the memoir I had decided to destroy. I don’t know what to make of this fact but the manuscript proceeds into the world.
Now? I am nearly thirty-three years old. I have every material thing I have ever wanted.
Tomorrow I will write letters to the people who made a difference in my life. Several are dead now; a few are beyond reach. I believe that I have a responsibility to contact those I can still find.
I want to thank my high school history teacher and tell her how important she was in my life. She took me aside and told me that I should go to college. She opened up the world in a tangible, practical way.
So to summarize: happy new year, and happy birthday to all the other sad winter babies.
I have now officially cooked two large holiday meals for many guests without the benefit of a fridge on the same floor as the stove (not to mention the fact that the downstairs fridge holds approximately two yogurt containers and a head of lettuce).
Yesterday in the middle of preparations the sink backed up. I skittered around trying to pretend that all was well and only admitted otherwise late last night after dosing it with chemicals. Byron took the trap apart and poked around but the problem was beyond us.
This is what I learned today: hiring an on-call plumber during a holiday is very expensive. Also: even if you can afford to pay, the problem may not be resolved.
If you happen to own a house that has been renovated from a one-room bungalow to a two-apartment four-room duplex there are many complicated jerryrigged pipes.
If you are an especially lucky person you may learn that your house has not one but three (or more) connections to the street sewer line. If you are even more fashionably eccentric you may be informed that existing pipes lead to no known outlet. Or that the upstairs toilet is leaking and rotting portions of the carpentry and downstairs walls.
To learn these lessons, you may find that many large holes are knocked into your kitchen, living room, bathroom, and bedroom. Without any noticeable improvement in the drainage of the sink.
But after paying the plumber and resigning yourself to the idea of taking out a second mortgage to fix the whole system you may find that the sink suddenly works again – mysteriously, hours later, and for no discernible reason.
All is well if you don’t mind big holes, enormous repair bills, and the impending doom of bathroom repairs.
The in-laws arrived yesterday for a holiday visit. Byron’s dad looks healthier than ever before; remarkable after the harrowing illness.
Rumor has it that certain members of my extended family will join us for supper tomorrow, along with AEM.
Our house is warm, the children are content, we are having fun. I do the work I want to do and wear the clothes I want to wear. My stomach still hurts, but aside from that grim reminder of illness, I am content.
This is what I know right now:
I am lucky. I have a good life.
The company is too large to have just one party; each division or group has a separate celebration. Because Byron works in two divergent areas we get multiple invitations…. but this year we forgot to attend the decadent big party and instead had dinner with the research crew.
What does the scaled-down version look like?
Last year they rented the Seattle Art Museum during the Frida Kahlo exhibit and we had free run of the place. This year they chose the only truly grand hotel in town. The food and open bar were endless; the tables were massed together with enormous floral decorations. I think that there might have been some kind of carnivale theme based on the big swaths of fabric and sparkly masks.
I like free stuff. I also like research scientists. So long as I can avoid the question So what do you do? these events are always quite jolly. Much fun was had by all.
I always say: if you sell out, at least get lots of treats out of the deal.
Plus, I had a good excuse to wear my demented majorette dress.
Today I went to an actual mall to purchase sundry gifts that could not be found elsewhere. Winter is a wretched season and shopping in an enclosed space with angry humans and overpowering scents does not generally improve my mood.
But instead of getting angry I started to hum and sat down right there next to the caged Santa to take notes.
Here are a few of my favorite things:
-Comprehensive health and dental insurance
-Reading in the bath for hours
-The Olympic range, from a distance
-The way Mount Rainier seems to slide across the horizon as the Fauntleroy ferry motors toward Southworth
-The burrito bus down in Rainier valley
-Collards, rice & gravy with a biscuit at the Globe
-Swallows swarming over the knoll at Sand Point
-The friendship of my children
-The love of my friends
The best thing by far this year? I’ve made so many promises and commitments I simply do not have time in the schedule for pesky cancer tests. Tra la la & happy holidays!
Byron has been in California and my co-editor and co-author have been either sick or working so there hasn’t been much progress on the books in the past few days. I would have been stressed out but Erin Scarum arrived for an unexpected visit.
One of the great things about moving away from Portland is the fact that people tend to arrive and stay for days at a time. When we lived in the same city, even when we used to sing together every week, normal life was so chaotic that I never really had a chance to talk to most of the people I considered true friends.
I remember the first time I ever talked to Erin. We were asked to work the door at an event because we were arguably the toughest chorus members – and would make everyone pay to get in. She was wearing regular clothes, work pants and a shirt, but I had on some kind of costume – my see-through orange dress with a ruffled bosom, or maybe my green square dancing dress. I kept the door receipts wedged in my cleavage and we sat there on stools, not talking, while people glared at us as we collected the full cover charge with no discounts for friends.
During various lulls in the event we realized two things. One, that we both felt compelled to check our teeth even if we had not been eating; and two, that we share a birthday.
Our lives are not, in the abstract, very similar. But we have so much in common that it is almost eerie. This is true of everyone I know who was born on the same day as me, regardless of the actual choices they have made. No matter what they do or believe, they react to events and encounters in much the same way I would.
Today when we picked the boy up at school he had one of those little paper games where someone asks a question and picks a number and he showed Erin. I talked to the teacher for a moment and then we walked out of the building.
My question was Will it snow?
Erin said I asked if it would rain. I
picked the number four and she said I picked four!
During the visit we went to museums and thrift stores, cooked greens for supper every night, and talked. I am so happy to know someone who makes sense. My general reaction to socializing with people (even those I love) is to wonder exactly what they are talking about.
But folks born in the winter are not mysterious; they can decide on a plan and stick to it.
This morning I heard from a friend who told me that someone who has professed loathing for me, and demonstrated their ire in obvious ways, is now enthusiastically looking forward to reading my next book. Recently I heard from another friend that someone who was highly critical of my young self now tells all who will listen how much he always adored me.
I don’t really know what to make of these reports. I maintain an almost fetishistic devotion to the concept of truth – even if the truth is uneasy or sad.
I’m sure that whatever happened with these people was mostly my fault. I am a difficult, prickly, eccentric person. During the cancer years my sense of pride was the only thing that kept me alive long enough to make a series of profound mistakes. It has taken extraordinary effort to remain tethered to this world and act with decency.
I do not expect people to enjoy my company.
But then as I sat here fretfully considering my dark past I remembered that it doesn’t really matter. If people want to revise their own history and be friendly, I’m willing to accommodate this as a new truth. I bear no grudges precisely because I understand the inexorable reality of imminent death.
I feel no ill will toward anyone, regardless of what they have done or said. It is foolhardy to care more about the past than the present.
I went back to my journal from last December. Reading the whole thing was rather startling; I guess I had lots on my mind last winter.
I seem to have accidentally forgotten to go to a few of the company parties (once may well be enough) but we did see the arrival of the Lucia bride in Poulsbo. I do not particularly believe in criticizing community events; suffice to say that we had more fun last year, when the whole presentation was geared toward true believers.
This year I could easily have skipped the whole thing and hung out with my relatives in the Sons of Norway private bar. But I will hold out hope for the future based on the memories of past events.
I mailed about twenty-seven promised packages; if you are expecting an order or trade and do not receive it by the end of next week please let me know. Except for those of you who live in Europe – the post office predicted at least two weeks.
I’ve been so busy I haven’t been able to keep up with correspondence but I’m so happy to have received such great stuff lately! Get well cards from lots of folks including Opadit, and Hiya & Jonathan, holiday greetings from Chokobotkid and others, good wishes and a care package from Candywarhol, a mix tape from Sholanda, an audiozine from Erin Yanke… the list goes on. I am sure that I have neglected to mention scads of others. I’m lucky to have so many interesting friends.
Eli is visiting this week while she performs at Mixer 2: A festival of contemporary dance solos.
915 E. Pine
Tickets are $12 for one program (Eli is in Program A) or $20 for both. Shows are December 4 – 7.
Recently I heard from various sources that a couple of people I know are hell bent on destruction. I mean this to be taken literally; both are making such extreme and specific choices I am surveying my clothes to figure out what to wear to the next funeral.
These are people who make me laugh, who shine with a particular kind of seductive genius. These are people I’ve scraped off sidewalks, bailed out of jail, visited in psych wards, mailed cookies to when they found far-away jobs that were supposed to be some kind of new life. I’ve given vast amounts of time over the years in an effort to help them.
Eventually, because I was tired and needed to protect my own physical safety, I drifted away. Not because I stopped caring but because the combination of poverty, mental illness, and addiction is lethal. I knew that if I stuck around I was risking my own life.
My instinct is always to help people, render aid, start rescue operations. But I’ve done that for these friends, with no marked change. They have benefited from the vast efforts of a large community. They have been diagnosed, medicated, analyzed, rehabilitated, and in the end jailed. They have held down jobs, gone to school, traveled. Nothing has ever worked for more than a few months at a time.
I think that the underlying mental and physical disabilities might be things that can be treated, but in both of these lives addiction has such a strong hold nothing else sticks. Or the variety of addiction works at cross purposes with the need for certain prescription drugs. Or the legal drugs can never fully treat the profound level of damage. In at least one of the lives, it is also a clear choice. Even if she had never started using she would be suicidal. The drugs are simply the method she picked.
Right now I feel sad because I hate waste, and these people have wasted their youth. I am angry because I love them and they are leaving.
I wish that I knew the magical antidote to alienation and depression. I wish that I could mend the terrors of a lost childhood. I wish that I could force my friends to listen and understand that there is another life. I wish that I could make it true. I wish that I could follow, grab their hands, drag them back.
I wish that I could feel enough rage that this hopeless love would die.
But I’m left behind, sorting the facts, writing empty sentences, wishing.
Today I was driving along and listening to the radio when a pop song started to play. This was a song I never liked from a band that never interested me, but I found myself overwhelmed with nostalgia. I felt this song on a visceral level, in the middle of my body, like grief.
I remembered being young, and never having what I needed to do what I wanted. I remembered the mad escapes and the regret over leaving. I remembered mistakes, damage, cold rain, driving through dark forests. I remembered choosing the people who cared for me instead of the people I cared about.
As a child I memorized the airline schedules for flights to England, and read my way through the entire library with no discernment. I constructed this fantasy of what life could be if I could just leave, get away.
Anna Ruby, Stevie, Marisa, Maki, AEM, Byron, Stella, Al, Erin Scarum with a chainsaw, an assortment of happy kids. Good food, slide shows, shadow puppets, laughter. How could a holiday get much better?
From my kitchen to yours, happy thanksgiving.
This weekend I learned that it is possible to leave the Bremerton Value Village at closing and still make the 9:45 Winslow ferry to Seattle. How cool is that?
Thrift scores included an assortment of garments that appear to have been tailored just for my quirky body: a black checked polyester blazer, yellow skirt, red and white floral hostess outfit, and a dress best described as demented majorette.
On Sunday we had breakfast with AEM and Mark. Upon hearing that we lived in Olympia at the same time (and did in fact live near him on Cooper Point for awhile) he said but But I don’t remember you.
I replied I had different glasses then.
We had quite an interesting discussion about ghost towns in New Mexico before saying goodbye and departing to pick up and drop off various children.
Later Mark objected to appearing in this journal, which is hilarious. I replied via AEM: welcome to the twentieth century.
Our adorable old fridge broke! Or rather, the handle did. We have no idea what to do. Call a repairman? But who? Seems like a job for a welder; but maybe there are specialized beloved old object repair people nowadays?
Alternet picked up my essay The Rest of Us and it has been syndicated all over the place:
The continuing economic slide and disintegration of social programs will only make the split between poor women and rich women more pronounced and cause deep anxiety for those of us who live somewhere in the middle.
Our insurance covers a new pair of glasses each year. I’ve used the benefit because I like to have an heir and a spare on hand at all times. Byron could not be persuaded that he needed to upgrade even though his old glasses never fit in the first place and lack of care has ruined the frames.
Then he watched a video of his presentation from the conference last week and realized exactly how disheveled he looks.
Yesterday as we were driving to a bookstore he said maybe I should consider getting new glasses and I blinked and immediately started issuing directives to drive toward Fremont.
We were almost turned away from the mission when we saw an old drunken man fall down a wooded slope, but after parking and hiking down to extract him from the blackberry bushes, dusting him off, and guiding him to a sidewalk, we went back to what I knew was an urgent task.
When Byron mentions even a glimmer of interest in consumer goods it is necessary to act quickly; coaxing him into a store is more difficult than caging a woodland creature.
Byron of course experienced the adventure as acutely painful. I helped him select spectacles that actually fit his face, inquired for the correct color, and examined the stock of vintage frames for additional options. While he paced and fretted, stopping occasionally to stare at himself in the mirror, I also picked out a new set for myself.
It took exactly forty-five minutes to choose, pay the deposit, and figure out how to get the old prescriptions from Portland.
This brings up a whole new problem for me. I may need to change my hair color.
I had my final check-up and clean bill of health this week. The surgeon said that the organ and debris pulled out of my belly passed pathology – no cancer.
During the most severe period of illness I kept an accurate count of my scars, but stopped at 300. My best estimate is that this new set of five brings me… close to 400.
Best of all, I now have an even number of surgical scars on my belly. I was bothered by having three; it seemed so untidy.
I told Ayun about my joy at having eight scars instead of three and she replied:
I was going to get all Schoolhouse Rocky on you and say place it on its side and it’s a figure meaning innnnnfinnnnnnnnnnity! But that would have to be a numeral eight and I bet the last thing you want is a trip to the plastic surgeon to make that one happen.
I was sitting here merrily typing away when I smelled blood – not unusual when I’m working – but then I tasted it. So I went and looked in the mirror and the gums near my front teeth were gushing. Blood was bubbling around the base of my teeth and pouring into my mouth.
This would not be strange if I had been eating something hot, or flossing with extreme vigor. But I was just sitting here, typing. I had a glass of water before going back to my tasks.
A few minutes later I checked the phone messages.
The school nurse had called to say that my sweet little boy had an “accident”
What she actually meant was: some other kid smashed his face into a brick wall.
His front teeth were broken, destroyed, he was bleeding copiously, and I needed to pick him up faster than the long drive could get me there.
I rushed across town to collect him, then rushed downtown to the only dentist who could see us in an emergency, the fulminating horror of the situation worsening with every second. My child was assaulted.
It wasn’t the moment to wonder if the school would address the situation (or if his protective older sister would extract vengeance before I could pick her up). It was not the right time to flinch or falter as I drove fast down the roads I associate with my own childhood medical trauma.
I just needed to get him to an emergency appointment, fast. Which did not mean a nice pediatric dentist with clowns on the walls and a treasure box and stickers at the end. Instead, it meant whoever could see us.
And the clinic offered no pretense of kindness or courtesy: three staff members held my sensitive baby down as he screamed and writhed, then painfully extracted three wrecked teeth.
The dentist said the damage may be permanent. There is no way to know, until his adult teeth grow in – if they ever do.
Afterward we walked to the car, tears and blood drying on his face, a plastic box of shattered tooth fragments in his hand. I promised the Tooth Fairy would be extra nice. I helped him settle in his booster seat, put on his walkman, and start a new book on tape.
Then I drove home, crying silently.
After I came home from the hospital Byron admitted that he was afraid that I would die during the whole ordeal.
This is not an unrealistic concern. My first cancer diagnosis was the improbable outcome of an appointment to check an ear infection. The skin cancer was discovered by my dentist. I am an oddity and rarely have normal experiences with medical problems other people experience as routine.
During the days of uncertainty Byron remained in good humor. He was courteous, kind, amusing, and helpful – everything that I could have hoped for. I didn’t have to worry about the kids or, most importantly, render assurances that I was fine. He would have helped me if I had fallen apart. He didn’t criticize the fact that I remained steady and calm.
He is, to say this another way, simply the best friend I’ve ever had. It is a piece of extraordinary good luck that he is also my one true love.
While I wondered whether to go on with the surgery (this was not an option in the eyes of the doctors, but I like to maintain a facade of control) Byron kept saying that the timing was convenient because he had a conference coming up and wouldn’t be around later.
I wasn’t really paying attention but he has been putting in fourteen hour days for a big company-wide event in which he is one of the experts and will present his latest tech innovation to many thousands of people.
My bespectacled sweetheart is so smart, I have no idea what he actually does at work – but he always comes home with funny stories.
Another interesting thing – the Ask Adrian portion of the conference refers to someone I went to grade school with. Life is full of startling coincidences.
I was being overly optimistic about my creaky old joints. Eating a couple of crackers was more than enough to inform me that I am not in fact recovered from surgery. I can literally hear the bones sawing against each other – it feels like it is happening inside my ear.
If I open my mouth more than half an inch I am entertained by a pop and vibrating whine like a rubber band violin.
In the middle of the first cancer year my mouth would occasionally lock open. Since then I’ve been more inclined to keep it closed.
Too many surgeries, too many dislocations, and now I’m just plain old. I would rather eat yogurt and soup for another twenty years than discover exactly how far I have degenerated.
I’ve had various alternative treatments to loosen up the joints and keep ’em limber, but the cartilage is long gone. I need to be very careful.
Oh, and remember that book I’ve been worried about since the only copy of the manuscript was stolen from my house two years ago this month? The project I have literally gnashed my teeth over, the one I keep threatening to abandon?
I haven’t decided what to do with the thing. But I finished writing it yesterday.
Last night I went out on my first excursion since the surgery. The affair was unexpectedly complicated due to the following:
1. I cannot yet wear clothes that come into contact with the incisions.
2. I do not own any clothes that do not come into contact with the incisions.
I gave Ariel my own beloved hoodie after I weaned my final baby. Most of my wardrobe was purged during the move. I have only the bare essentials – perhaps even a bit less than most people. For instance, I don’t own any socks.
So I edged into the world dressed in old tattered yoga pants (the voluminous variety with drawstring waist), a Breeder shirt, and Byron’s black hoodie. I had to borrow socks from my daughter, who owns no hosiery that is not brightly striped and knee-high.
I helped the kids pick out birthday presents for friends and rode along while Byron dropped various girls at a slumber party, then we ate soup and watched the lunar eclipse. I was exhausted by the time we came back, but that just meant that I slept well.
In fact, I was able to sleep on my side for the first time in over a week.
Tonight I was feeling even more ambitious and drove myself to the co-op. The ride was fine but I had forgotten about the Utne thing.
My daughter kept announcing to passerby that we are in the current issue. She even opened a copy to show the checkout clerk. I closed my eyes and hummed and pretended that I was somewhere else.
My tummy is settled enough that I think I can tolerate some normal foods. I am really looking forward to opening my black sesame rice crackers.
Last night I ate a sandwich and took a shower! I can chew and swallow again, and I don’t smell like a hospital any longer! Small things are beautiful.
One stray hospital memory: after the surgery, as they wheeled me up to the room, my main thought was I wish I had asked to keep the organ.
I felt an enormous chasm of regret opening in my brain. Then I remembered I’m not twelve years old.
Later when I confided these thoughts to Byron he said I had the same thought process. Plus it wouldn’t be very attractive if they were using words like “sludge” to describe what they took out of you.
Over the weekend the scar tissue in my abdomen strangled various organs, one of which ruptured, leading to a massive infection and requiring a four exploratory emergency surgery.
I’m home now. Thanks in advance for all wishes contributing to a speedy recovery.
CMJ is enormous, with scores of shows scattered across the city, and I knew that the likelihood that I would get to see anything on purpose was low. It is better not to fixate and be disappointed; I enjoy myself more when I have no expectations.
Years of performing forced me to develop a basic strategy for surviving festivals: I decided not to care.
However, the payment for performers is an all-access pass so, in between frolics with friends and meetings with my publisher, I dropped into whichever random array of sets happened to be nearby.
The only full showcase I made it to was the K records session. This seemed rather redundant since I go to K shows all the time, but on the other hand, I was feeling awfully homesick (for what, who can say).
When I walked in the the door a boy in a pilot’s cap shouted Bee! It was Kenneth, last seen on an Oregon beach.
My panel went well, although I’m sure I said many disturbing and controversial things – but there is no recording so who cares!
At some point I went to a private CMJ party and hung out with an assortment of writers and musicians until closing. When it was time to leave the bouncer stood with his arms crossed, barring my exit from the venue. He said the price to pass was a kiss.
He was perhaps a foot taller and a hundred pounds heavier than me but you know what? Nobody. Ever. Does. That. To. Me.
I’ve taken down scarier men in my time. Not quite as large as this one, but definitely more dangerous.
One strategy would have been to break his fingers, but I reckoned that was not strictly necessary.
Since we were at a fun happy party and he didn’t know that he had just violated a huge Bee rule I gave him the benefit of the doubt.
I reached out with both hands, grasped him under the arms, and… moved him out of my way. Like you might move a fractious toddler.
The big scary bouncer was completely shocked. He stumbled back, then stood, mouth open, staring after me as I stomped down the street.
I met Richard for the first time at the Soft Skull offices and he was surprisingly enthusiastic; he even hugged me. It is a good thing I took lessons in the subject because the trip would involve many more friendly embraces.
Later I was hanging out with Justin in Brooklyn. We lounged around his apartment, converted from a warehouse, where he lives with other Colorado expatriates. The apartment is the only residence I’ve visited in the city that actually looks like my juvenile fantasy of a NYC life.
We talked about the books we are doing for Soft Skull (how strange is it that so many of my friends sold books to the same press, when none of us ever discussed our plans? Very strange is the answer). On the way out the door I passed Jon (last seen at the naked snow party in Colorado) coming in – and we goggled and smiled and then said goodbye.
Another night I had dinner with KTS. His ex-wife Max showed up unexpectedly and we had been chatting for all of two minutes when it came out that she is roommates with Tennessee from Soft Skull.
I know these dinner companions from the NW in general and Olympia in particular. Not from shows, or the fact that we went to the same college, or indeed anything fun or youthful. Instead, I press-ganged a teenage KTS into my plans to start a nonprofit. During my incarnation as a government employee I once hired Max to do temp office work.
We caught up on news about mutual acquaintances, intricately connected groups of people who have been on the periphery of my life since the mid-eighties. I never thought I had much in common with them but now that we are grown up this appears to have been more about fashion than facts.
During a long subway ride to a borrowed apartment I lamented the fate of my cancer book. AEM (another Soft Skull writer) pointed out that if I publish it I will become the patron saint of all pariahs.
She didn’t seem to think that would be the best career move.
I always pack with fiendish precision and take more stuff than anyone could possibly need – and always find myself stranded without something necessary to deal with the weather.
Ayun advised me to bring my fuzzy hat (she says that it looks like a knitted toilet seat cover) but I couldn’t find it.
The wind kept picking up my crispy hair and whipping it straight up and across my head, where it decided to stick to my lips and then drag bright red lipstick lines across my face.
So: most important stop of the day – buying a black hat and gloves at Filene’s Basement, which is actually upstairs in a mall sort of building and looks nothing like my 1964 era daydreams. Anne claimed that my new hat was cute but it gave me a sort of exiled-to-Siberia look for the rest of the trip.
The Utne showed up on newsstands and I opened it to see a picture of myself. Then I spent the better part of a day fighting off a panic attack that was hard to trace in origin but has to do with the notion of identity.
I grew up mutilated, ugly. The fact that I have learned to manipulate my public image is a political choice. I’m not attractive by mainstream standards, but I photograph well – and it seems important to cultivate that dichotomy.
Though I could be wrong.
I am both pragmatic and idealistic and when people do favors for me I reciprocate, even if I’m not inclined to do whatever they would like. Byron will be watching the kids while I go to New York. He also has a research paper due while I’m gone.
This means that I am sitting here reading a Latex document with tiny script, squinting at terms like Boolean function and Cartesian approximation. I don’t have a vague clue what I’m reading, which isn’t a huge problem since I like to read esoteric things.
Phrases like automatic iterative abstraction refinement do not scare me.
But I’m reading for word choice. And you know what? Computer scientists do not share a common language – the people Byron works with grew up speaking a dozen human languages and they program in scores of other mechanical languages.
If they don’t know how to describe something, they don’t go to a thesaurus. They just make stuff up. Need a new word? Add a prefix! Still not clear? Add a suffix, or maybe two!
I spend most of my time red-lining words that I am later informed are common usage even though they do not exist in any other academic field.
Son (age six): What is a lackey?
Daughter (age thirteen): Kind of like a minion.
Son nods and goes back to playing with chopsticks.
Have been missing Rome. Must be the fall. Missing both Rome and that feeling of visiting different places. I enjoyed the light as much as the food, coffee, and company. Yes, the paintings, architecture, and history were lovely as well. Miss Palestrina’s wicked butterfly. The narrow darkness inside the buildings offset by the light stone stairways.
Last year as we settled in this new home I also missed the quality of light in Italy and wondered when I would be able to go back. I have not been able to plan another trip; it seems that I am always too busy these days.
Gabriel also wondered about Thanksgiving plans. It looks like we will have a full house again; I’ll have to turn the zine laboratory back into a kitchen.
Yesterday Byron spilled a tasty beverage on my keyboard. We unplugged it and cleaned it up but now the keys are sticky. I may never be able to type a parentheses again.
A couple of hours later he was innocently working on his laptop when it flashed the blue screen of death.
Obviously not his night for technology.
I was sitting in the living room working. My son, dressed in a red cowboy duster and red cowboy hat, rollerskated over and said:
Look at me, I’m so tall. When I was a little I was like a plate of lettuce!
Then he skated away.
I’ve lived across the water from my hometown for over a year without ever running across someone I knew growing up. When I go out I often run into college friends or people I know from the tech world. But I never see anyone from my reckless teen years.
Yesterday I was walking down Broadway with AEM and glanced in a store. I found myself staring right at one of my friends from back home, the only queer punk skateboarder in that dismal junior high school. He was looking back at me.
I kept walking.
This was a kid I really liked. When it was too dangerous for me to ride the bus home he invited me to hide at his house after school.
There were only about six freaky kids in that institution, and no more than a few dozen in the consolidated high school. Whatever solidarity we enjoyed was based mostly on the principle of safety in numbers. We were friends until graduation, when the crew of misfits split up and went off to have real lives.
I would have liked to say hello to my old friend, but I just didn’t know how.
Al is curating this and my daughter will be introducing acts:
Bands Against Bush
Friday October 3rd, 2003
Sylvester Park Gazebo
8-10 pm Free
Dub Narcotic Sound System
speaking: Phan Nguyen