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.

And We All Shine On

The first thing I realize about my friends after my diagnosis is how important they are to me. I want to tell everyone, right away, by e-mail, phone, snailmail, whatever.

The first few days I am inundated with replies. It turns out everyone knows someone who has had a brain tumor, and either died of it, or didn’t. Many people express a kind of generic shock. We're all baby boomers, and this death idea is just starting to take hold. People want to know if they can do anything. Specifically, do we need food? The food theme is poignant two ways -- feeble in the face of the medical reality, yet so comforting, and so human.

My friend Dirk in Brooklyn goes beyond chicken soup. He begins calling regularly, hoping to link me up with a traditional Chinese acupuncturist and herbalist he knows in New York's Chinatown. To hear Dirk, this man can achieve remarkable things, curing everything from dandruff to cancer. And I am ready to see him, when the doctor tells Dirk that, alas, acupuncture and herbs have little effect on brain tumors. Great of him to say so upfront, though -- and great of Dirk to get so involved on my behalf. Can you have a better friend than one that wants to roll up his sleeves and save you?

And Dirk isn't alone. Peter in Greenwich Village (he's a folksinger), calls to ask if I want him to get me a good East Coast brain man. I feel ungrateful telling him I think my Midwestern brain man (Dr. Gregory) seems pretty good. In fact, I am very touched.

My friend Jerry in Michigan City has a good line. "I believe there has been a misdiagnosis. What they are calling a tumor is really an organ in your head that only you have, that is in charge of being funny, and coming up with wonderful ideas." Thanks, Jerry.

A couple of friends get downright competitive with me. Sure, I have a brain tumor, but doesn't Abe in Toronto have a failing kidney, and doesn't Dennis in San Francisco have a weird asymptomatic blood disease? We are all three desperate to be sicker than the other two. They are jealous of my tumor, because in the realm of scary diagnoses, brain tumors plainly rock.

Then there's Dan from my poker group in Minneapolis. When I go down with the stroke, he's being tested for lung cancer. He doesn't smoke, but his symptoms suggest tumors. We've really not spoken much before, but one day we have one remarkable conversation in which we tearlessly tell one another that we don't mind dying so much, but it is hell to think of leaving our children and wives. Dan's a private man, but that day he gave me a peek into his soul.

The only friends who disappoint me are the ones who avert their eyes. We might be talking shop and I'll venture, "I suppose you heard about my little problem...." And it's like a cold draft moves through the room. I can just see these people pulling their collars closer against the chill. The tumor inside my brain somehow threatens them. They can't help it -- it's just too scary to acknowledge.

A number of people want me to say something to make it all right for them. If I tell them I'm ill, they know how to respond. But there is a gray zone between "ill" and "fine," that I live in, that they have trouble dealing with. The answer they want is the answer we are supposed to give even when our hearts are breaking, and our bodies are opened wide and bleeding: "fine." By not providing that answer, I am being difficult.

A few people turn away, but with a good excuse. My friend Jane in Saint Paul asks me to take her off my brain tumor email update list. "I just can’t take it," she says. "Can you understand?" It isn't just squeamishness, which is what she claimed. I can tell she genuinely fears for me, and it unnerves her. Her fear is a sign of her caring.

I get a note from Alice, an old friend, also in Saint Paul. "Thanks for being so 'out there,' about your problem" she says. "I am trying to be less ashamed of my weakness, a tremor in my hand that I can't control. I haven’t wanted people to know. I feel like I'm letting them down." She discloses that she is "coming out" with her problem. She has joined an online tremor group with the name wemove.com.

People can have very unusual reactions. When I tell a neighbor lady at our door about my tumor, she bursts into tears -- and I mean rolling, sputtering, cascading raindrops -- and hugs me like it is the last time she would see me. I try telling her it's all right, but she is unconsolable on my behalf.

But the strangest and most pathological response is my musician buddy Erv's. Erv is a jazz clarinetist in Chicago. We are at a club listening to a piano trio. I sip my beer and fill him in on what is going on with me.

"I have headaches sometimes, but they’re not too bad. The weirdest thing is probably the seizures. Rachel counted over 400 one night when I was asleep. The thing that bothers me the most is that I can’t have sex. The blood vessels in my head are unable to cope with the volume when I get excited, so they shut me down with head pain when I get close to an orgasm. It really hurts."

Erv looks at me through this without blinking. I forget the conversation took place. A month later, over coffee, he tells me he has a confession.

"I have been in pain since I saw you last."

"What kind of pain?"

"In my testicles," he says. "I got it into my head that you were in agony there, and then I started feeling it, too."

"But -- I don’t have any pain there."

"Yeah, I screwed that part up -- but once I started feeling it, I couldn’t make it stop."

It is Erv's misfortune in life, he explains to me, that he is unable to hear a medical story without reproducing the same symptoms in himself. He's like that empath in The Green Mile who takes away people's pain, and takes it upon himself. This is partly out of genuine sympathy -- he only does it with people he cares about. The other part is pure neurosis. He can't help it.

The transformation was immediate. Within a few minutes of my describing my problem to Erv, he was in self-manufactured agony. But he never even winced in my presence. I am stunned that he is able to do this -- that he is in act unable not to do it.

Then I repeat my mistake with him. "The worst thing about this tumor is thjat I think about it all the time," I say. Maybe I say it to let him know I have neurotic traits, too. "Sometimes I walk walk down by the river with my dog, and I talk into a microcassette recorder about my thoughts. I think about all sorts of things, but I keep coming back to this thing in my head."

Erv then astonishes me by doing an impression of me, right there in the coffeehouse. He acts out me walking the dog, during a sharp a tumor headache, but still trying to dictate a column into the recorder.

"How about a satire about the COMDEX show in Vegas, only no one shows up because there's nothing new... " He holds his fists to his temples and winces from pain. "Ow, ow, ow ... I can’t think."

Then he punches the rewind button on the recorder and plays back the sobbing: "Ow, ow, ow ..."

All this happens in about six seconds, and it is hilarious, but it also sends a chill through me. Erv is pantomiming my final days. This nutty bit of comedy has given me my first real glimpse into my possible future. Until that moment, I had never pictured myself torn between working and suffering.

My poet friend Rich takes the opposite tack. He tells me I'm thinking about my tumor too much. He especially criticizes my efforts to write about it. "There's no way you’re going to achieve any meaningful perspective on this so soon after diagnosis," he says. "And it's no good for you. You don’t want to make a cult of this thing."

I am taken aback by this at first. How dare he pull the rug out from under my illness? But as time passes, I find he is exactly right. In the long view, the tumor is very boring even to me. But at the moment that I was blurting out my feelings to him, it seemed like everything. Meanwhile, I had dozens of people inquiring about it every day. What was I to do?

So I ask myself, "Finley, what is it you want from people exactly?" And I have come up with these thinking points.

First, I do like sympathy. I always have. I think it has curative value. When people express concern I feel loved, and that somehow shelters me from my own fears. And there is truth in it.

Whereas, when I act nonchalant and say, "Oh this is nothing," or "They say it's benign," I see my friends erase the topic from their minds completely. I don’t want it to disappear altogether, because damnit, it's an important issue for me. I want to pull these friends back in and say, "But, you know, benign tumors kill people all the time. There's only so much room in there, and the brain wants it all to itself."

So I have come up with the Michael Finley Worry Index. It's a number from 1 to 100 that I make up, and that changes from day to day, as new information arrives. It's like the fire-risk ratings posted by the U.S. Forest Service. The night I had my stroke, my rating would have been 90. By the time I was first diagnosed with the tumor, my rating was still high, about 60 -- moderately high worry of imminent death. As successive scans showed that the tumor was big, but appeared to be inert -- that it had done the worst damage it was likely to do -- I have slowly dropped it to 47, then 35, and now 28. Which is about what it should be for people my age (50).

So now I can do a service to my friends. Just as they brought me roasted chickens and assorted other hot dishes, now I can put their minds somewhat to rest concerning my condition. Knowing your concern is geared to an appropriate level is a great comfort all around.

And you know, it was just about the time I instituted this index that I felt a cloud lift inside me. It isn't just my friends' job to take care of me. I have to take care of them a little, too. I have to help them through this passage the same as me. The index gives us all an out, a place to stand, a kernel of numerical, no-bullshit truth. Now, when I see a friend, and we have gone over the ground rules, I give a thumbs-up and utter the number: "28."

And you know, it feels so great to be alive, and to enjoy the affection of so many good people. That alone buoys me up. 28? On a good day, on a really, really good day, when there is laughter and stories and the glorious feeling that I am finally getting through to people, that I am finally feeling known to them, I can go even lower.

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