by Michael Finley
Copyright © 2001 by Michael Finley

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A Master of the Wired World?

I just got my author's copies of a new book from Financial Times Management (London), MASTERS OF THE WIRED WORLD: Cyberspace Speaks Out.

What's remarkable is that this collection of manifestos about the new age a'dawning contains proclamations by Tony Blair, Al Gore, Charles Handy, Nicholas Negroponte, Arthur C. Clarke, Alvin Toffler ... and me.

To order, click here. Discounted price is $18.87 from Amazon.

The Melting Windshield

Three days after my discharge, I need to pick Daniele up after school and drive her to her counseling session. She is doing follow-up after a bout with depression several years earlier, and she likes Judy, the psychologist. I also know she is very concerned about me, and I hope talking the problem out with Judy will be useful to her.

Problem is, a light rain has begun to fall before I even get to Daniele's school, and the sight of raindrops forming a film on the windshield is doing something strange in my brain. I am having trouble thinking about the different "layers" of visual reality -- the sky around me, the street in front of me, the inside of the car, and the in-between zone where the wipers are slapping the raindrops away.

It all threatens to peel away into separate layers, and my mind is trying to decide which layer to attend to. Unfortunately, my mind seems most interested in the windshield, where actual dangers are minimal. I am hallucinating, and that isn't good. But I am simultaneously experiencing something I have not experienced in perhaps eight years -- an ophthalmic migraine.

An ophthalmic migraine is not a headache, but an event affecting one's vision. It is hard to describe, but it is as if there is a glowing light in the center of your visual field, that wipes out everything you expect to see there. You can still see, if it is a mild event, by rolling your head, Stevie Wonder-style, so that your peripheral vision takes over, and you "paint" the scene for your brain to interpret.

By the time I pick up Daniele at her school, I am deep into the migraine, and freaking out. My judgment is also going, and I don't know what to do. It's rush hour, it's snowing, I'm hallucinating, my visual field is dwindling, I have the treasure of my life sitting in the front seat beside me, and I have an appointment with a psychologist who will charge me $100 if I am a no-show -- compared to the $15 co-pay I owe if I do show up. It is a 5-mile drive to the office. And I am afraid to freak Daniele out by showing her my alarm -- after all, my condition is the reason we're going to the psychologist in the first place.

I take a deep breath, decide that the migraine is not spreading, and that therefore I will not lose more visual field than I have already lost -- maybe 15%. I calmly explain the situation to Daniele and drive very carefully to the appointment, then sit in the vestibule for an hour, wondering what I have done, and wondering what I will do next time this happens -- and it could happen any time.

I am guided by two conflicting factors. The first is self-interest: I want to be free to do what I want to do. The second is ethics: I don't want to kill anyone.

Many brain tumor people are prone to seizures, and people prone to seizures can have their driver's licenses revoked. Some neurology clinics, in some states, conduct seizure-provoking tests on patients. If doctors can provoke a seizure, their responsibility shifts from you, the patient, to the state. If they fail to report you to their state's motor vehicle division, for the revocation of your license to drive, they risk the loss of their license to practice medicine.

It's all about license and licenses.

I certainly have no desire to hurt anyone, most especially my daughter Daniele, who looks like me ands thinks like me and who, if I were to rise out of this realm tomorrow, like smoke through a flue, would be my first and only choice to replace me.

But neither do I want to lose my driver's license. So much of what I am and what I do is bound up in the act of moving about freely -- chauffeuring my kids to school, driving down to the Mississippi for a walk with my dog, stocking up on groceries at Jubilee. I like it. It defines me. It's American, and I was born in the fourth of July.

First, my sex life, then my memory, and now my car -- I don't like the direction this thing is taking.

But it gets worse. I haven't held down a regular job, with employer-paid benefits, for the previous 15 years. As a freelancer I exist from assignment to assignment. I've saved some retirement money, and set aside some for the kids' college. I even have enough life insurance to pay off the mortgage if I went down for the count. But I have no disability insurance, if I went down and tried to get back up.

I always have assumed that I would be able to generate income into my 70s and even 80s. If you're a writer, and you can still think, why would you retire? Rachel always insists I wear a bicycle helmet when biking. "Take care of that noggin," she says. "We can't let anything happen to that sweet little money-maker."

But I wonder. I am still trying to get a bead on the implications. The life remaining to me is like an onion, and I can't just slice through it and understand it in one swell foop. I have to unpeel it, slowly, one layer at a time. Thinking of Dick, in whose footsteps I seem fated to follow, I thought first of money.

The hell with the Moby Dick book. From my third-floor office, gazing down upon my innocent neighborhood, I conceive of a new project, so admirable and so heart-rending, the story of my own sad situation, and how I face it as bravely as any man ever faced his own end.

Not that I am maudlin about it, mind. Not me. I maintain an agreeable humor to the last, cheerful and inspiring and a blessing to all who meet me.

I figure, worse case scenario, I had somewhere between 30 and 60 good writing days, before the tumor shuts down my faculties forever. So I quickly outline a book, quickly dash off a few heroic pages, and e-mail a half dozen writer friends begging them, at such time as I fall in my battle, to pick up the standard and carry it forward for me -- to finish my book by committee. And do it for free, so my family can luxuriate in the royalties my tale will generate.

My judgment is completely shot. Here is the e-mail I sent my writer friends:

There is a certain chance something bad could happen to me pretty soon and I won't be able to write any more.

I'll probably have surgery in a month or 6 weeks, and there's a possibility (the figure of 5% has been bandied about) I could lose my ability to understand language. Along with a 1% chance of croaking on the table.

If that happens, I would like to have something in place that could possibly earn some money for my family, so they can keep the house.

So I want to try, in the next however many days, to write a book about having a brain tumor. I have a thousand stories already lined up in my head, and I think it could be really good.

But I would only have time to do maybe a rough second draft.

So what I am proposing is that you finish it for me if I can't.

When I have something ready to show, before the operation, I could send you all the draft. And each of you could read it, and think how you would make it better.

I'm not a great writer, I know. But if I blow out, you guys can make me better than I ever was on my own.

What do you say, my brothers and sisters?

As payment, I'll mention you in the acknowledgments.

I put my friends in a very awkward position. First, I am asking them to acquiesce to my belief that I am a goner. That is a shameless manipulation. Second, I am asking them to work for free -- writers do that far more often than they'd like. And third, I am asking them to work together, something writers who know and love one another would rather die than do. How much more horrid my particular circle of author friends -- inscrutable and unbalanced loners, to the man/woman -- would find that task.

Yet everyone responds gently. Charlie writes to say of course he would do anything I ask. Maureen says she is humbled to be on the list. Miles suggests I torpedo the tumor book and focus on fixing up old work that was already done. Alison says it sounds like a great idea -- writers write their best under deadline. Andy focuses on the positive side of 1% fatalities -- if you turn your head and squint, he says, the figure suggests a 99% survival rate. Some friend.

No one challenges the self-pitying pose of my message, or thinks ill of me that I never bring up the subject again. As far as I know. They are splendid, rolling their eyes and biting their tongues, but nonetheless agreeing to the request. Not one tries to talk me out of dying.

The title, I took from an illusion I had during an ophthalmic migraine. It seems to me like what Paul must have seen on the road to Damascus, that knocked him off his high horse, too. The romance is that a tumor is a message from God that some special plan is underway.

And for a week I am in love with that title: A Spike in the Sky.

The problem is that I don't die in 30 to 60 days as scheduled. And I can't figure out what approach to take. Over the course of six months, then a year, then two years. I go through over twenty titles and as many approaches in my mind.

O      The Big Cry ... This is my Death Be Not Proud, a brave, tear-jerking memoir that my friends will have to finish for me and will make everyone wish I was still alive. I have to jettison this otherwise fine idea when my condition improved.

O      A Hole in the Sky ... a variant on the spike idea, referring to the tunnel vision effect of an ophthalmic migraine. It also refers to a recurring dream I had as a child, that my job was to keep the firmament intact, and one day it begins to crack, and my job, patching the hole in the sky, is (in the dream) heartbreakingly impossible.

O      A Hole in the Head ... suggests what follows may be wacky, yet philosophical, with intimations of Frank Capra, not to mention Sinatra, singing "High Hopes." I remember my dad, when I was a kid, saying, "I need X like I need a hole in the head." I wonder if that came from some reference to war wounds, or the obviously ineffective 19th century practice of drilling holes in the skull to relieve migraines.

O      Complaining. When I realize that all this talk about brain tumor is unbearable to readers, I consider an extended essay on the uses and practice of bitching. Alternate title: The Book of Bitching. This concept also helps me sidestep the problem of me getting better.

O      Dumbstruck. It sounds like a movie or something, doesn’t it?

O      Thinking of a Tumor. This is an airy conceit, a book that is half me thinking about the thing in my head, but half a second narrator, the tumor itself, describing the progress of its campaign. This idea strives insofar as possible to make the tumor a sympathetic character. I decide, after a few peculiar pages, this it is just too weird.

O      Boomer the Tumor. This is a memoir of my experience, but also a gloss on the baby boomer generation coming to terms (finally!) with its mortality. But I find I felt no particular affinity with my own generation, so I drop it.

Nothing works. It's too hard, especially for my addled head, to learn the science of brain tumors in time to meet my deadline. My own personal story seems too thin to stand up to heavy hitters in the literature like John Gunther's Death Be Not Proud. I consider doing a book of stories about other people's brain tumors. They'd be serious and respectable. I find I'm only interested, deep down, in my own, which is not very serious or respectable. Among serious brain tumor people having a meningioma is like riding a bike with training wheels.

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