Year: 2004

I just booked our May visit to Cambridge. When I clicked on “title” the ordinary list of Mr, Mrs, Ms, and Dr was enhanced with Sir, Lord, Lady, Capt, Prof, Rev.

According to the relocation fellow, if we don’t find an apartment by the end of May our kids have zero chance of getting good school assignments.

We can’t apply for visas or schools until we have an address. But we won’t be able to find an apartment until June. Which is too late to apply for visas and schools.

Byron says rather unhelpful things like: Relax. People have been moving back and forth across the Atlantic for hundreds of years. It will work out. The Pilgrims did not work for Microsoft.

To which I reply: The Pilgrims didn’t have to rent an apartment ahead of time.

Byron: That’s true. So you’re saying that the modern English housing market is worse than the Irish famine?

Me: The Pilgrims were fleeing religious persecution, not a famine.

And so on and so forth.

Planning brain, engaged! It looks like we need to visit Cambridge the third week of May.

This decision has been hampered by the fact that the relocation fellow has a computer virus that is bouncing email, Byron is interviewing interns all day, phone calls are happening between the two of them during breaks and across the time difference, and I’m getting only whatever fragments of information falls between the cracks.

I guess this is kind of funny. Maybe a little.

Recently I took the kids in for basic checkups. One needed blood tests and the other needed a tetanus shot. After the appointment we had the following conversation:

Boy: My arm hurts.
 Girl: My arm hurts worse! A blood draw is worse than a shot!
Me: No. There is no hierarchy of oppression. What you need to say is – this sucks for me! That sucks for you too? Then look at each other with sympathy…
Girl interrupts to finish: And say, Brother, let’s start a union!

Last weekend I took a crew of teenagers to see The Shape of a Girl at SCT. I didn’t know what to expect; the tickets were in my pocket all week and I never looked up information about the show.

The narrator of the play is unreliable, not a bystander but actually complicit in the torment of another child who was once her friend. The character evokes the female culture of censure, the desperate danger of isolation, and the risks inherent in speaking out.

During the performance there were moments when I was literally doubled over with the horror of the piece – it was a visceral experience for me not only because of the rural NW setting but also because I was victimized by other children during the cancer years.

It would have been hard to watch the play just on that level, but it is also true that I was never simply a victim. I fought back – with words but also with my body. I learned to fight not just for myself but for others who were weak. I could never, would never, passively allow someone to be injured. I would rather not have a community if the tradeoff means looking the other way and ignoring abuse.

I’ve walked away from relationships, friends, more than I care to contemplate because I refuse to compromise this belief.

As we left the theatre my daughter urged me to tell some of the stories from my reckless youth but I shook my head, too overwhelmed. I said that my tooth hurt and that she could tell the stories later.

If you have an opportunity to see the play – you should. It is really very good.

I decided to sell all of my extra books. There are at least three hundred that mainly serve to collect dust; no matter how much I enjoyed reading them they are not applicable to current projects. I have an appointment with a dealer tomorrow. Cross your fingers that he will want such illustrious titles as:

• Reflections on Gender and Science
• The Fiscal Crisis of the State
• Images of Organization
• The Data Game: Controversies in Social Science Statistics
• Statistics for Social Change
• The Sociological Imagination
• Experience, Research, Social Change
• Crisis, Health, and Medicine
• Human Inquiry in Action

Dental technology has evidently advanced during the seven years I ignored a rotten tooth. My third root canal on this dratted molar went swimmingly; new tools were able to slip down all the way to the source of the infection.

Now I feel ill, but not bad enough to require pain medication. Good news all around.

Last weekend Satnam and Susan moved to town; Jenni and Paul came to look at houses and schools; Eli and Ruby showed up with travel stories.

I cleared out our storage area and gave away carloads of stuff. I was so busy I didn’t even have time to go to a show I helped organize.

Change is definitely in the air, the sun is shining, and this life is sometimes an excessively strange adventure.

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?

Yes.

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.

Stella and Al just dropped by to give me the most amazing, thoughtful, beautiful present ever – calling cards designed specially for me: calling cards!

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.