Copyright (c) 2000 by Michael Finley

In January of 1999 I experienced a stroke, which was found to have been caused by a brain tumor inside my head. When I learned this, I sincerely believed I would not live to the millennium.

No need to get out your handkerchiefs. It turns out, I'm doing fine. Well, not fine, but "28" -- which I'll explain.

What I want to write about are the different ways my friends responded to this news. As you can imagine, I learned a lot in those first weeks.

The first thing I realized was how important my friends were to me. I wanted to tell everyone, right away, by e-mail, phone, snailmail, whatever. I think I felt that if I got them all engaged, I would somehow be spared. It's like the tumor would lose me in the crowd.

The first few days I was 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 expressed a kind of generic shock. We're all baby boomers, and this death idea is just starting to take hold. They wanted to know if they could do anything. Specifically, did we need food? The food theme was poignant two ways -- feeble in the face of the medical reality, yet so comforting, and so human.

My friend Dirk went beyond chicken soup. He began calling regularly, hoping to link me up with a traditional Chinese acupuncturist and herbalist he saw in New York's Chinatown. To hear Dirk tell the tale, this man could achieve remarkable things, curing everything from dandruff to cancer. And I was ready to see him, when the doctor told Dirk that, alas, acupuncture and herbs had little effect on brain tumors. Nice of him to say so, though -- and great of Dirk to get so involved on my behalf. Could you have a better friend than one that wants to save you?

Dirk wasn't alone in this. Another New York friend, Peter, wrote asking if I wanted him to get me a good East Coast brain man. I felt ungrateful telling him I thought my Midwestern brain man was pretty good. But in fact, I was very touched.

My friend Jerry had 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." Well, I liked it.

A couple of friends got downright competitive with me. Sure, I had a brain tumor, but didn’t Abe have a failing kidney, and didn’t Dennis had a weird asymptomatic blood disease? We were all three desperate to be sicker than the other two. They were very jealous of my tumor, because in the realm of scary diagnoses, brain tumors plainly rock.

Then there was Dan. The same time I went down with the stroke, he was being tested for lung cancer. He didn’t smoke, but his symptoms suggested tumors. We had not spoken much before, but we had one remarkable conversation in which we tearlessly told one another that we didn’t mind dying so much, but it was hell to think of leaving our children and wives. Dan is a private man, but he gave me a hell of a peek into his soul that day.

The only friends who disappointed me were the ones who averted their eyes. We might be talking shop and I would venture, "I suppose you heard about my little problem...." And it was like a cold draft moved through the room. I could just see a few of these people bundling themselves up against the cold. The tumor inside my brain somehow threatened them. They couldn’t help it -- it was just too scary to acknowledge.

A number of people just wanted me to say something to make it all right. If I told them I was ill, they could handle that with the customary gestures. But there was no gray zone between "ill" and "fine." The answer they wanted was 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 was being difficult.

A few people turned away, but with a good excuse. My friend Jane asked me to take her off my brain tumor email update list. "I just can’t take it," she said. "Can you understand?" It wasn't just squeamishness, which was what she claimed. I could tell she genuinely feared for me, and it unnerved her. Her fear was a sign of her caring.

I got a note from Alice, an old friend. "Thanks for being so 'out there,' about your problem," she said. "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 disclosed that she was coming out with her problem. She even joined an online tremor group with the name wemove.com.

People can have very unusual reactions. When I told a neighbor lady at our door about my tumor, she burst into tears -- and I mean rolling, sputtering, cascading raindrops -- and hugged me like it was the last time she would see me. I tried telling her it was all right, but she was unconsolable on my behalf.

But the strangest response was my writer buddy Erv's. We were out playing pool a month after the stroke. I sipped a beer and filled him in on what was going on with me, that I got these bad headaches, and nighttime convulsions, and my weakened circulatory system meant that certain activities, like having sex, caused me to be in a lot of head pain.

I never thought twice about telling him that. But a month later, over Thai lunch, he confessed that he is sometimes unable to hear a medical story without manufacturing the same symptoms in himself -- partly out of sympathy, partly out or neurosis. He's like that empath in Star Trek, who took away people's pain, and felt it himself. Except, Erv couldn’t help it.

He told me that while we drank beer and shot pool that first night, he was secretly feeling agonizing pain in his testicles, which is what he imagined I was feeling. He continued to feel this pain for the better part of the next week. But he never even winced in my presence.

While we poked at our satay, I repeated my mistake. I told him my tumor was bothersome because I obsessed about it. I wanted to write about it. It was all I thought about -- but it also seemed to interfere with my thinking process. I was using a microcassette recorder out walking, to save my ideas.

Erv then astonished me by imitating me trying to dictate into the little machine while experiencing a severe headache, uttering a promising phrase, then clasping his head and moaning loudly, right there in the restaurant. It was hilarious, but it also sent a chill through me -- he was pantomiming my possible final days.

My poet friend Rich took the opposite tack. He told me I was thinking about it too much. He especially criticized 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 said. "And it's no good for you. You don’t want to make a cult of this thing. It isn’t you."

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

So I asked myself, "Finley, what is it you want from people exactly?" And came 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 came 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 the same as most 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 dish, 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. Doggone it, it wasn't just my friends' job to take care of me. I had to take care of them a little, too. I had to help them through this passage the same as me. The index gave 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 beautiful feeling of being known, I'll go even lower.

 

 

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Michael Finley's brain tumor, a meningioma the size of a small bird inside his left ear, is in remission. Visit him at www.mfinley.com.