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.

Guilt and Forgetfulness

I have had weird headaches since my stroke. When I try to have sex, I am fine for the first few minutes. But as my excitement increases, I involuntarily "bear down," and the pain in my head would begins to skyrocket. It is usually so bad that I stop whatever I am doing immediately.

A couple of times, before my neurologist warned me not to do this, I try to "go through" the pain. It is impossible -- even when I am able to finish, I experience a sharp migraine-intense pain that dwarfs whatever release the orgasm allows. In fact, the two sensations merge, and the orgasm becomes agony.

I do not take this well. To lose such a thing, and to not know how permanent it would be -- it makes me want to keep trying. So I keep hurting myself. I am 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.

So one of the first results of my stroke and tumor is to make the act of love physically intolerable. It pits that part of me that most wants to be alive with that part of me that most wanted to stay alive. If I were a computer it would be like dividing by zero; fatal error.

The next residual side-effect is memory loss. Months after the stroke, I am still having a dickens of a time remembering the simplest things -- the names of things, and what people tell me on the phone. All my head can hold is generalizations and vague reminders.

It is especially troublesome because I feel called upon, for my life's sake and my family's, to listen very, very well -- like, to doctors, about different types of tumors. 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 can suddenly remember every story of Kafka's I had ever read. They seem -- relevant.

It is somewhat similar to the kinds of memory loss I was feeling anyway, at age 48. I was already notorious in my own household 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 is happening now is worse. I now have a hard time remembering anything, even in my work. And even when I do recall something -- a date, a word, a name, an intention, a message -- I have to coax it out using an assortment of mental pulleys and cables.

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

Stress is 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: people with great memories exude 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 is shit.

And it isn't just memory -- the failures extend 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 Saint 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 (I never have experienced one 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.

Another 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:

Some say the world will end in fire

Some say in ice.

But from what I know of loss,

It could also end in frost.

It is possible to have very virulent brain tumors and feel no pain from them. This is because, while the brain is the switching yard for the body's nervous system, telling you how everything in your body -- and in your soul -- feels, it itself has no nerves of its own, hence no sensations. If you somehow bypass your skin and scalp, which are loaded with nerves, you could stick a fork in your brain and feel nothing. The exception is intracranial pressure. Some, but not all brain tumors, cause headaches. A few of these are excruciating, migraine-level affairs. The pain of most tumor headaches, however, can be treated with a few Advil.

What you are more likely to feel, I find, are psychological pains. My primary sensations in the weeks following my diagnosis are distress that I seem to be forgetting things, worry about my declining abilities, and shame -- yes, shame -- that I have allowed this thing to overtake me.

My tumor has decided to dwell right next to my temporal lobe, the part responsible for language. If it grows, it stands an excellent chance of causing major disruptions to my abilities to speak, to write, and even to understand English. (And Spanish and French, my other languages.) Already, I count among my symptoms an inability to come up with the right word for things, and sometimes, a fuzziness over the meaning of a statement I heard on TV or the radio. The words vanish as soon as I hear them. I can't recall them to parse their intent. They are gone.

My only symptom is a decreased ability to do detailed assignments. I only have a handful of clients, and the most important to me of these is a speaker series called the Masters Forum that brings in management philosophers and futurists like Alvin Toffler and Lester Thurow to talk about organizations, leadership, and change management. My job is to create a 10 page report on each speaker. The report has to be useful, but it must also be readable, something attendees can pass on to their teams back where they work.

I used to be able to hear a business talk and quickly create a textured, detailed report on the points raised. Since my diagnosis, however, it's harder to focus on the minutiae of a talk. When I review my notes, I can't recognize them.

On the other hand, I still feel able to convey the overall meaning of a speech, so I simply write my reports a bit differently – more about general themes and less about specifics. No one has complained – yet I feel I am cutting corners, and yielding ground I will never again occupy. What will happen as the tumor grows, and I yield even more ground? Will I abandon themes in favor of flavors? Will I abandon long sentences for short ones? Will all meaning collapse like a black hole into a single dense punctuation point from which no light escapes?

(Indeed, as I wrote the preceding paragraphs just now, it took me three full minutes to come up with the name of Lester Thurow, perhaps the world's best-known economist, with whom I was fortunate to have lunch just a year ago. I knew his name began with a T, and that he was at MIT, and that he had a head of curly hair, and had once climbed K2 in the Himalayas. But I had to sit with those associations until my brain rerouted the question and furnished the answer.)

This is so different from the way I used to remember things. How will I remember his name once I have forgotten all the clues? At what point, en route to total language loss, do I set the pen down for good?

When I do put it down, I will be letting everyone down with it. It's my job to keep things going, keep money coming in, keep grinding grain, keep laying track. It's a brute task, a manly task, even if all I am is a writer. But its brutality protects me from a lot of fine details. Grind the grain, lay the track, and no one will ever think less of you – you’re a good provider. All you have to do is keep providing. Which I don't think I'll be able to do.

How dare I throw the lives of those I love into tumult just because some pointless protein has spread its bedroll inside my ear? Oh, the shame of it.

So many things fasten us, like roots, to this life. Guilty feelings, though we associate them in our minds to the greater life beyond this one, often root us tighter to the routine we cannot bear to move away from.

What is "martyrdom," the way we have come to use the word, but a way of getting what we want? How often do we let guilt slide us closer to God, compared to how often we use it to anchor ourselves to dead habits?

After my diagnosis, and the emerging likelihood that doctors, in order to save my language center from being squeezed till it ruptured, would have to dig the expanding meningioma out of my head, I read up about the history of brain surgery. It is a stunning story of people slashing the long, hairy roots of conscience and hubris, for a greater good beyond.

Reading about the early surgeons has helped me deal with my sense of guilt. What they did, cutting into suffering people's heads and killing them all, was awful -- but they did it anyway, to end the suffering of others.

There has always been craniotomy -- the opening of the skull to relieve pressure, to release spirits. There are wall drawings of skull penetration going back 7,000 years.  But craniotomy is bone surgery, not brain surgery. It doesn't breach the sacred veil of the brain. Richard von Volkmann, the greatest German surgeon of the 19^th century, a doctor who would go anywhere and do anything to save a patient, drew a line at the brain. In 1904, Harvard Medical School doctors, reviewing experiments that crossed this line, concluded sadly that the only benefit of brain surgery for persons with tumors was to relieve pressure -- removing tumors was impossible.

A search of medical journals in 1906 showed that of 828 brain tumor operations undertaken, 315 patients died almost immediately. But that number didn't tell the whole story. Of the survivors, a sickening majority lingered for a time -- "paralytic, epileptic, blind" -- and then died. True surgical cures occurred about a tenth of the time.[1]

But 10 percent represented progress. Enough good things were happening in the field to embolden surgeons to continue. Indeed, it was the pathetic condition of brain tumor sufferers that impelled pioneer neurosurgeons to go on a cutting, sawing, and drilling campaign that killed virtually the first one thousand patients on the table. They were in such misery that taking their lives away, or their ability to think, or speak, or smile, or move, did not seem so unbearable a risk.

Much has been written about the hubristic attitude required to make an initial incision in another human being. Take that hubris and then quadruple it and know that you’re going in where no one has gone before, and that your first hundred patients died the instant you opened them up, and you have an idea what these surgeons were made of.

Like Civil War generals, they shed the blood of many, and besplotched their own immediate reputations, to create leverage for the future. Their patients died on the table so that my neurosurgeon’s patients could get operated on and survive.

And do I imagine that, at the end of each day, these doctors felt guilty? And how. In that sense, their psychological complex leaves God’s in the dust. God can revel in his omnipotence and omniscience because he is, after all, omnipotent and omniscient. Like Superman, he never pays the price for his powers.

"Victor, if you operate on that man, he will die," a neurologist said to the turn-of-the-century brain surgeon Victor Horsley, who used to perform brain surgery in his patients' parlors. "Of course he will die," Horsely replied, "but if I do not persist, those who come after me will do no better."

Another surgeon, Harvey Cushing, performed an operation on Maj. General Leonard Wood, a military pal of Teddy Roosevelt's. Wood was about to be named chief of staff of the U.S. Army in 1909, when he began to experience paralysis in his left leg and seizures. Cushing was terrified of going inside the head of a national hero, and was relieved when the surgery was postponed: "Glad the operation has been postponed; for everyone dies that I touch."

Eventually, Cushing removed a huge meningioma from Wood's brain. Eleven days after surgery, the general, who had lost all feeling on one side, was up and walking again. It was a red letter day for practical brain surgery. But it was a terrible struggle for Cushing. Was he God, to take upon himself such a task?

Neurosurgeons take so much upon themselves, all the doubts and self-accusations, and then they summon the strength to go in again anyway.

There must be a lesson in there for people like me and the kind of guilty feelings I have. Maybe guilt is just the price of admission for being alive and cutting the flawed deals we have to cut. Maybe it is just the table stakes for sitting down to play.

I have an opportunity to visit another brain surgeon, for a second opinion on my case. Everyone I speak to recommends and praises him for his personality and technique. I am pretty happy with Dr. Gregory, but I see no harm in a second opinion.

Let me call him Dr. Rajib. He is perhaps the handsomest, most charismatic man I have ever seen, a poster boy for eugenics, equal parts Jimmy Smits (NYPD Blue), Ricardo Montalban (Wrath of Khan) and Rutger Hauer (Blade Runner) -- noble and Third Worldy and mystical.

"I am so glad you came to me," he greets me with an arms-around embrace. It's like meeting Jesus, I think he may kiss me and my tumor will shrink to the dot of an i.

Instead of sitting behind a desk, he sits on the floor. Instead of medical whites he wears khakis, with a tan belt holding him in. Instead of examining negatives on a light panel, he lays his hands on my head, and massages the place where the trouble is. He speaks more like an actor than a doctor, in rich, dramatic cadences. He seems to be a Superman of every kind of intelligence -- medical, social, emotional, theatrical.

"You have what is called a meningioma," he says. "I concur completely with the other doctor's findings. To me, you are so lucky, because you can do whatever is in your heart. You can leave it where it is, and if it ever should cause you a problem, I will go in and I will take it out. It is easy to get to. I could do it in my sleep. But I wouldn't -- I promise you I wouldn’t.

"Or, if it is your wish, you may ask me to go in this very week and take it out of you. It is not necessary, I assure you, but I would not blame you in the slightest if you felt this way. If it were me in your place, I might well want it gone, so that I never need think of it again."

I leave his office, unsure if my feet are touching the ground. I would be so lucky to have this man saw my head open, I am thinking. I would be blessed.

But Rachel, who is plugged into the local medical scene, discovers over the course of the next few days that a number of Dr. Rahib's cases are in court. Not easy cases like mine, but very difficult, virtually impossible tumors that Rajib evidently felt confident unraveling.

He is either a very good man, I decide, willing to cut into people with unsolvable problems, hoping his genius and luck will carry the day. Or he is a very mixed man, with many wonderful successes to his credit, and some failures that whisper the word hubris in a clenched voice.

I'll stick with plain old Dr. Gregory.

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