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.

Anne C. Leer, editor

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

---

Unpeeling the Onion

Discovering you are ill and may die means unpeeling yourself like an onion, to find out what is there. The first level usually exposes superficial concerns -- how your life may have to be restructured to accommodate the new realities. How we make a living may have to change. Whether we can drive a car may be up for grabs. Insurance, daily routine, and future plans. We sneak up on the introduction of horror into our lives by grasping at these important but essentially external concerns -- who'll drive the kids to school?

The day after I am discharged from the hospital, I am still gurgling inside. Every now and then I can feel an air bubble, or possibly a bubble of fluid -- marking dye? -- that doesn't want to dissolve in the rest of my brain soup, come loose from a structure low in my head, and rise to the top.

But it's not like the tickle you feel in a lake when air bubbles on your leg grow until their own lightness forces them to surface. Because, paradoxically, the brain, which is the switching yard for the body's nervous system, itself has no nerves. If you could somehow bypass your skin and scalp, which are loaded with nerves, you could drive a blade or bullet into your gray matter and not feel it. Which helps explain certain kinds of suicides.

Headaches are something else again. They are generally the result of intracranial pressure, which a tumor can easily cause -- a head with a brain plus a tumor in it is fuller than a head with just a brain in it. Thus you may feel the "bands of pain" familiar to migraine sufferers everywhere. Or you may feel a headache, much like the ordinary everyday ones everyone gets.

I have had weird headaches since my stroke. The most troubling one, to me, is the migraine-like pain I feel when I try to have sex. When you have sex, you place pressure on your entire circulatory system. Blood flowing to your naughty bits is part of it, but also there is the expulsion effect you experience near orgasm. It's called the valsalva maneuver, and you do it during various functions -- forcefully exhaling, coughing, sneezing, holding your breath, "bearing down" when going to the bathroom, and nearing orgasm.

When I tried to have sex, I would be fine for the first few minutes. But as my excitement increased, I would involuntarily "bear down," and the pain in my head would begin to skyrocket. It was usually so bad that I stopped whatever I was doing immediately.

A couple of times, before my neurologist warned me not to do this, I tried to "go through" the pain. It was impossible -- even when I was able to finish, I experienced a sharp migraine-intense pain that dwarfed whatever pleasant release the orgasm allowed.

So one of the first results of my stroke and tumor was to make the act of love physically intolerable. This may sound trivial to you, but it was not trivial to me -- it pitted that part of me which most wanted to be alive with that part of me that most wanted to stay alive. If I was a computer it would have been like dividing by zero -- I would have fritzed out.

I did not take this well. To lose such a thing, and to not know how permanent it would be -- it made me want to keep trying. So I kept hurting myself. I was even doing it alone, trying in vain to find a way around the pain, to complete the act without "bearing down." You would need to be a yogi, with total breath and reflex control, in which case you probably wouldn't want to have sex anyway.

The next residual side-effect was memory loss. For weeks after the stroke, I had a dickens of a time remembering the simplest things -- the names of things, and what people told me on the phone.

It was especially troublesome because I felt called upon, for my life's sake and my family's, to listen very, very well -- like, to doctors. I had to learn the differences between kinds of tumors, with names like meningioma, medullablastoma, craniopharyngioma, glioblastoma multiforme, neuroblastoma, astrocytoma and oligodendroglioma. With names like those, who needs diseases: the words alone could do you in.

All my head could hold was generalizations and vague reminders -- to me they all sounded like Oklahoma -- but I was reminded of the Kafka novel Amerika, which involved a traveling theatrical troupe from that state. Perhaps the tumors were actors in that company.

Come to think of it, I could suddenly remember every story of Kafka's I had ever read. They seemed -- relevant.

It was somewhat similar to the kinds of memory loss I was feeling anyway, at age 48. I was already mildly notorious for being "absent-minded" -- mislaying papers, forgetting phone messages, etc. Some of this was due to middle age, but an equal part had to do, I believe, with being a writer, and being more interested and absorbed in the project I was working on, which could occupy at least part of my mind 24 hours a day, than in what Mrs. Mientkiewicz told me on the phone about Thursday's soccer practice -- or was it Friday's? I have always been selectively amnesiac.

But what was happening now was worse. I now had a hard time remembering anything, even in my work. And even when I did recall something -- a date, a word, a name, an intention, a message -- I had to coax it out using an assortment of mental pulleys and cables.

It was embarrassing. I kept apologizing to people, telling them I wasn't quite right since the stroke. They made every kind of excuse for me. "Oh, we're all like that," they'd say. "I'd forget my head if it weren't stapled on." "You'll get it back." "It's just stress."

Stress was the wild card. Experts on memory say that the number one factor preventing us from readily accessing the things we know is the pressure we put on ourselves to come up with an answer. The harder we try to remember, the less we can remember. Which makes perfect sense: every person you meet who has a great memory exudes confidence. It's not that their memory is naturally superior, and therefore they are confident; rather, their confidence is the reason their memory is better. Attitude is everything. But my attitude was shit.

And it wasn't just memory -- the failures extended to simple focus. One day in February, Debbie, an old friend of mine from college, invited me via e-mail out to her farm, about 50 miles from St. Paul. She had horses, and Daniele liked to ride. Debbie e-mailed me a set of instructions, which I kept on my lap during the long drive. I was very proud of myself. I not only didn't have a seizure (to this day I haven't had an event while driving), but I navigated all the country roads, turning the right way, staying on the icy curves.

It wasn't until we found the house, and I knocked a dozen times on her door, that I realized I had come on the wrong day -- a day clearly stipulated in the very first sentence of the e-mail message in my hand. Humiliated before both my daughter and an old friend, I drove home in silence.

One day I couldn't think of a writer's name. And I searched frantically though my memory for it, ransacking the associations I did have. I knew he had white hair. I could see the hair in my mind, and intuited that his name had something to do with the weather. Could his name be snow? My mind was a flurry of possibities that led me nowhere. Snow White? Snowy Bleach? C.P. Snow? Lord Snowed On?

I got it finally by relaxing and thinking of his face, and then the name came to me. Only when I knew that, of course, his name was Robert Frost, did I come up with a good mnemonic:

I was frowning a lot, and blinking. It was as if a bridge had been knocked out in my brain, and thoughts had to stop their car, get out, and bushwhack their way via a freshly macheted path to get where they needed to go. Often, the thought-in-progress stopped at the edge of the ravine. Befuddled, it never got properly thunk.

This was annoying on the face of it. But if you had known me before the stroke, it was especially grievous. I was one of those obnoxious people who had a world of trivial information ready for instant access. It was as if I'd been bred in a top-secret eugenics laboratory, twenty stories below the New Mexico desert, to do well on quiz shows.

Lo, how the mighty are fallen.

What I had no trouble remembering was things that happened long ago. In 1961, after my sister died and my father took off, that left my mom with us three boys. My dad went to California to try his luck with a new life and a new wife. There would be many months, to hear my mom's side of it, that no child support checks were forthcoming. She was devastated by my sister's death at age 15, but she rallied to keep the three brothers afloat.

My mom had always worked, as a waitress at Stouffer's and other restaurants, including the steakhouse she now worked at. But until now, her income always went to pay for extras. Now she had to provide everything. She responded to the crisis by biting off more than she could chew, waiting tables by day and selling insurance for Mutual of Omaha by night.

My mother is a proud, indeed a queenly person, and the insurance sales gig was totally wrong for her. The field office would provide her, as the last person hired, with the worst possible list of cold contacts -- the old, the mentally infirm, the flat-busted and the lonely of Lorain County, Ohio -- and she would show up on their doorsteps late at night, smelling like a french fry doused in cheap perfume, to instruct them about life's myriad dangers -- all except insurance salesmen, anyway.

As a child of 11, I sometimes rode with her, and waited in the car for the five to fifty minutes it took the party to say no. I tried to cheer her up as she sank into the upholstery of our old '55 BelAire. But I probably had the opposite effect.

She never, to the best of my knowledge, in her four of five months of trying, sold a nickel's worth of insurance. But it was an emergency, and this way she felt like she was doing something. To this day, I get a crawly feeling from the phrase Mutual of Omaha. It is the one game you are insured to never win.

My mom soon went back to working full-time at the steakhouse along Lake Erie. She had always been the favorite of the boss, Dick Konik, even before my dad left her. With him gone their relationship took on a different character, and they began dating.

Dick was a very manly man, the son of a Cleveland speakeasy operator and, some say, bootlegger. Dick would pull up our drive in his jeep truck and sweep us all away to some Chinese place only he knew about. He always seemed to have a wad of 20s in his pants pocket, and he loved to flirt with the waitresses wherever we went, calling them "Honey" it was bold, and teasing, and friendly all at the same time. And they seemed to love it.

Though I was only 11, Dick put me on the payroll, too. So I spent every weekend, and every summer, washing dishes for him, or bussing tables, or mopping out the bar. He had a murderous temper at times, but his rages passed like summer storms, and afterward, he seemed to have no recollection of them, and certainly no rancor. He was a big, handsome, loud-voiced man who you knew just loved you to pieces -- but he was unable to say so. Instead he was all gesture, and twenty dollar bills, and the loudest laughter I have ever heard.

Dick Konik rescued what remained of my family. He married my mom, put my brothers and me to work, and changed us from paupers to royalty in a huge Polish godfather family. He owned numerous businesses which he ran on a first-name, usually cash basis -- a restaurant, an excavating company, an d anything else that smelled profitable. He was a doer who genuinely liked people. And everyone loved him back.

But when he was diagnosed with a malignant brain tumor, twenty years later -- his doctors all assured him it was "probably benign," just like mine -- his little graymarket financial empire collapsed around him. No insurance at all -- isn't that funny?

Three days after my discharge, I need to pick my daughter Daniele, a high school freshman, up after school and drive her to her counseling session. She was doing follow-up after a bout with depression several years earlier, and she liked Judy, the psychologist. I knew, further, that she was concerned about her old man, and I hoped talking the problem out with Judy would be useful to her.

Problem was, a light rain began to fall before I even got to Daniele's school, and the sight of rain drops forming a film on the windshield did something strange in my brain. I had 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 were slapping the raindrops away.

It all threatened to peel away into separate layers, and my mind was trying to decide which layer to attend to. Unfortunately, it seemed most interested in the windshield. I was hallucinating, and that wasn't good. But I was simultaneously experiencing something I had not experienced in perhaps eight years -- an ophthalmic migraine.

An ophthalmic migraine is not a headache, but an event in which one's vision is affected. 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.

By this time, I am freaked, and I pick up Daniele at her school. I am unsure what to do. It is rush hour, I am mildly hallucinating, my visual field is shrinking, 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. I determine that the migraine is not spreading, and that therefore I will not lose more visual field than I have already lost -- maybe 15%. I explain the situation to Daniele and drive very carefully to the appointment, then sit in the vestibule for an hour, wondering what I had done, and wondering what I would do next time.

Because many brain tumor people are prone to seizures, and people prone to seizures often lose their driver's licenses. Some neurology clinics, in some states, conduct seizure-provoking tests on patients, flashing strobes in their faces until the electroencephalogram chart shows the typical jaggy pattern of neural spasm, when the brain decides to abandon it usual meticulous method of signal-transmitting and instead spray the entire body with random electricity.

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 licenses.

Now, this may seem very right to you -- we don't want to have drivers flipping out at the wheel and driving willy-nilly into crowds of people. I certainly had 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 did 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 -- you couldn't like the direction this thing was taking.

But it gets worse. I haven't had a regular job, with employer-paid benefits, for the past 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 had no disability insurance, if I went down and tried to get back up.

I always 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 insisted I wear a bicycle helmet when biking. "Take care of your noggin," she would say. "We can't afford to have anything happen to that sweet little money-maker."

But I wondered. A week after getting the news I had something growing in my head, I was still trying to get a bead on the implications. The life remaining to me was like an onion, and I could not just slice through it and understand it in one swell foop.

I had to unpeel it, slowly, one layer at a time. Thinking of Dick, in whose footsteps I seemed fated to follow, I thought first of money. What could I do to make amends for dying at the onset of a 30-year mortgage?

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

Not that I was maudlin about it, mind -- no, I maintained an agreeable humor to the last, cheerful and inspiring and a blessing to all who met me.

I figured I had somewhere between 30 and 60 good writing days, before the tumor shut down my faculties forever. So I quickly outlined a book, quickly dashed off a few heroic pages, and e-mailed a half dozen writer friends begging them, at such time as I fell in 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 could luxuriate in the royalties my tale would generate.

I put my friends in a very awkward position. First, I was asking them to acquiesce to my belief that I was a goner. It was a shameless manipulation. Second, I was asking them to work for free -- writers do that far more often than they'd like. And third, I was 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, every one of them -- would find that task.

Yet everyone responded gently. Charlie wrote to say of course he would do anything I asked. Maureen said she was humbled to be on the list. Miles suggest I torpedo the tumor book and focus on fixing up old work that was already done. Alison said it sounded like a great idea -- writers write their best under deadline. Andy focused on the positive side of 1% fatalities -- if you turned your head and squinted, he said, the figure suggested a 99% survival rate.

No one challenged the self-pitying pose of my message, or thought ill of me that I never brought up the subject again. As far as I know. They were splendid, rolling their eyes and biting their tongues, but nonetheless agreeing to the request. Not one tried to talk me out of dying, which was more than many so-called "friends" seemed capable of.

The title, I took from an illusion I had during an ophthalmic migraine -- a bright light in the middle of one's field of vision, that blinded the viewer to everything else. It seemed to me like what St. Paul must have seen on the road to Damascus, that knocked him of his high horse, too.

And for a week I was in love with that title, A Spike in the Sky.

But I went through over twenty titles, and as many approaches in my mind. Nothing was good enough. I decided I was too ignorant to put together a good fact book for tumor victims, too self-absorbed to do justice to the stories of other people, and too healthy to speak to the gut-wrenching struggles of people with truly aggressive malignancies -- astrocytomas, gliomas, medullablastomas, and the like. In brain tumor circles, having a meningioma is like riding a bike with training wheels.

All I had was my own mind,

The problem was, I was able to jot down great notes, but they didn't fit together to make a whole. And even when I was able to tell one part of the story, about getting an MRI, or about bawling in the nurse's arms, I couldn't get that to fit together with the other parts.

My memory came, and went, and swung around back, then veered away again. I couldn't focus. I would be unable to come up with a word, and by the time I did come up with it, I forgot what I wanted to say with it. The only tactic that worked at all was thinking. Away from paper and pencil, the experiences and impression stormed through me like a loud symphony. But I couldn't write any of it down.

And if I couldn't write, what could I do?

When I stopped and thought about it, I was pretty goddamn terrible at everything else. I had no professional knowledge base, no manual or technical skills, no great gift for being with people, and certainly no humility to start at the bottom and learn any of these things. When I looked long and deep into the crystal ball, I saw myself putting groceries in a sack, and none too quickly.

I spent a lot of time on the Internet after my diagnosis. I found the American Brain Tumor Association (www.abta.org), a clearinghouse for reliable information on types of tumors and treatments. There are websites about meningiomas, and there are many sites advancing this procedure over that procedure, and this hospital over that hospital.

After a couple of days I posted my first message. It was about the nuts and bolts of survival:

What I wanted to hear was reassurance -- stories of people who made minute adaptations, and were able to keep themselves occupied and money coming in.

What I got instead were letters of foreboding, sorrowful invitations to a land of sorrow and confusion. Many of the responses were not from the people with the tumors, but their spouses, partners, parents, and, in a few cases, their survivors. They told a uniform tale, of underestimating the weight of the load they were made to carry.

They talked about scaling back on everything. Of lying to their insurers. Of moving back with relatives. Of drifting away from careers and into hobbies, to pass the time. Of simplifying their material lives, to make room for the new complication. Of becoming virtual ragpickers, selling off possessions on the Internet auctions.

Most of the writers that I flagged down were not in danger of dying. But all had had their lives affected catastrophically by the things inside their heads. Many had had multiple craniotomies, as one meningioma was removed, only to have another grow in its place, or two, or three.

Some people experienced permanent losses - to speech, to memory, to coordination, to vision. I got letters from people with tumors affixed to their optic nerves, like a giant squid encircling a submarine, and halting its progress. Not one was able to return to his or her job, the way it had been.

One letter especially stood out. I had to put thinking behind me, Rose, at one time a screenwriter, wrote. The intelligent horror of her communications hauled me out of denial like a gasping trout:

I remembered one night when I was ten. My sister had not yet died, or my parents divorced. I awoke very late to hear voices outside, and see headlights flashing as several cars rounded the curve in our drive. Kathy and Pat and I gathered by Kathy's bedroom window to see what was going on.

Outside I could make out the figure of my mother, crying into my father's arms. The bumper of her beautiful red and white '56 Chevy BelAire, our family's pride and joy, dangled from the hook of a wrecker. The grille was smashed in, and various dripping fluids had made a puddle on the slag.

Nearby, we saw a dark shape hanging from an apple tree. Then high beams of the pick-up of Mr. Thomas, our landlord, shone on a dead deer, tied by the heels and strung upside down. My mom had struck a deer, bolting out of the trees along Leavitt Road, as she drove home after her waitressing shift. The men were here to salvage the meat.

As we watched, Mr. Thomas, a small, balding man who resembled Picasso, stepped forward with a butcher's knife, plunged it into the deer's groin and slowly cut downward, opening the animal's belly up.

Then he took his gloved hand, reached inside the animal, and began pulling out stomach, intestine, liver, and finally the lungs and heart.

The parts made a flomping sound as they tumbled onto the grass. The pile of guts they made seemed bigger than a single deer could hold inside it.

Everything inside had to come outside, I thought, as I huddled with my brother and sister. I can still remember her hand on my shoulder. But the cost, judging from my mom's face, was so high. By the time the grown-ups returned to the house, we had all crept back to our beds.

(c) 1999 by Michael Finley

Get your signed copy of The NEW Why Teams Don't Work by Mike & Harvey Robbins from Berrett-Koehler Publishers Just click on the book cover! A fully revised second edition of this award-winning classic by Harvey Robbins and Michael Finley Paperback Winner, Financial Times/Booz Allen & Hamilton Global Business Book Award, Best Management Book - The Americas, 1995 Table of contents and sample chapters of this book... Just click on the book cover to order your signed copy for only $12.95. Table of contents and sample chapters of this book... Why Change Doesn't Work: Why Initiatives Go Wrong and How to Try Again and Succeed Harvey Robbins, Michael Finley Hardcover Just click on the book cover to order your signed copy for only $12.95. Table of contents and sample chapters of this book...

Why not bookmark Mike's columns for your weekly enjoyment?

I enjoyed serving this essay up for you, and I did it for free. If you'd like to contribute to this site, however, to keep it up and humming, consider dropping a $1 tip in the "Honor Box" here. Think of it as a voluntary subscription. Just click the CLICK TO PAY image here. Thanks! - Mike

Total tips, year to date: $203.00 - MANY THANKS!