JANUARY 2001
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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.
My talk with my kids is my high heroic point. Almost immediately thereafter I experience a sharp curtailment in confidence.
The problem is, I am not thinking as well as I used to. It just isn't there for me any more, and that terrifies me. I try to write, and the words go down on paper, but they are disjointed, they don't fit together to make a whole. Worst of all, I can't see that. I'm thinking, if I wrote it, it must be coherent. But I can see from people's expressions that it isn't.
And even when I am able to tell one part of the story, like getting the MRI, or about bawling in the nurse Carrie's arms, I can't get it to fit together with other parts. I feel like a wagon coming apart in midjourney.
My memory comes, and goes, and swings around back, then veers away again. I can't focus. I will be unable to come up with a word, and by the time I do come up with it, I forget what I wanted to do with it. I feel like I'm thinking OK, but my writing is just awful. Away from paper and pencil, the experiences and impressions storm through me like a symphony. A lot is going on inside. But I can't get any of it down.
And if I can't write, what will I do?
When I stop and think about it, I am pretty goddamn terrible at everything else. I have no professional knowledge base, no manual or technical skills, no special gift for being with people, and certainly no humility for starting at the bottom and learning any new tricks.
When I look long and deep into the crystal ball, I see myself putting groceries in a sack, and none too quickly.
Following my diagnosis I spend a lot of time on the Internet. I manage to locate 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.
But what draws me like a magnet are two listservers, one for people with all kinds of brain tumors (LISTSERV@mitva.mit.edu), the other just for people with meningiomas (requests@hydra.welch.jhu.edu). Soon I am a subscriber to these ongoing chat sessions, and my e-mail box is never empty for long.
I steer clear of the MIT list, as it is dominated by medical discussions, monitoring the decline of extremely sick people with severe malignancies. Many of the entries are requests for prayer for a particularly difficult moment in treatment, or news of the passing of a name familiar to the list's regulars. I feel if I raise my little worries about how to make a living there, I will be slapping these people in the face.
Remember my list of twelve complaints? When I show the list around on the Internet brain tumor listserver, most people resonate with the feelings I was getting at. I have several people write me that I am saying what they wanted to say, and that it is helping them.
But one tumor survivor, named Karen, won't have any of it. "I feel like a cow after finishing your little list," she writes me, "-- milked."
This hurts and confuses me. In my mind I am just being honest, though possibly a bit melodramatic. But Karen, who also strikes me as honest, and not just a pill, saw my effort as sick and manipulative. The criticism sticks in me for a few days, like the barbed tip of a porcupine quill. Then writing kicks in, and I figure out that if I just tuck in the descriptions here and there, make them a bit more emotionally rigorous, they work better.
Also, I remind myself of the writer’s dictum -- you can’t please everyone. Like the father and son leading a donkey into Bremen, listening to everyone's suggestions, you eventually drown the donkey.
Complaining can be unseemly but it also has purposes, and a stubborn part of me wants to become an advocate for complaining, and plead the plaintiff’s redeeming benefits.
First, it’s so human. What an act of friendship it is to listen to someone else’s complaining. Indeed it is what separates friends from associates -- only friends will put up with our whining. If you think about it, the best conversation between friends is like a shower in unclean water. You tell your gruesome stories, in a gruesome way, and the friend patiently waits to tell his or hers. It's what we do.
Second, it is developmentally necessary. Complaining is a transitory stage in the development of understanding. It is a creative way of coping with negativity. There are only three things you can do with negativity. You can express it and move on, you can express it imperfectly and sustain it, or you can stifle it, and never move on, or have to come back at some future time and work it through. I’ll choose the first option any time.
The problem is, complaining is just enough fun that many of us hang up there, and never move beyond it. Some of us stay there because it is in our personalities to hang up there. Some of us are falsely encouraged by our friends to hang up there, so that they too can hang up there. It's a classic codependent strategy: "If you don't move on, I don't have to move on."
To kvetch, to fuss, to piss, to moan is critical to healing, so much so that I hereby nominate it to be added to Elizabeth Kübler-Ross's list of stages of suffering.
Complaining is a moment on the road to growth. It is a condition of imperfect perspective -- seeing only negatives, seeing oneself at the center of the world's pain -- that with most people improves naturally with time, and expression. Complaining outwardly is the best way to quell complaining inwardly. Having expressed the negativity, a dialectical process kicks in, and the complainer moves on to the next stage -- humor, self-reflection, "on the other hand" thinking. You put the grouse behind you.
Finally, all writers complain. Complaining is the source of so much art. Chaucer used it. He wrote several "complaynts" among his short poems, including "Complaynte to His Mistresse" and "Complaynte on the Size of His Purse." And they are jewels of their genre, comical yet persuasive. After padding through Troilus & Cressida, what a relief it is to learn Chaucer had little things he needed to bitch about, just like we do.
I think of Mel Brooks’ great comedy The Twelve Chairs, in which Dom Deluise plays a corrupt priest in the Russian Orthodox Church, scheming to recover a fabled chair from the czarist era containing a fortune in jewels. Time after time he snatches a chair matching the description, rips it to shreds, to find nothing but excelsior and springs. Finally he can take no more, and from a mountaintop he shakes his fist at heaven in a classic pose, crying out to heaven: "You’re so strict!"
I focus instead on the meningioma list, figuring people there will be like me, gamely figuring ways to make the best of things. But I violate a key rule of Internet communications: I write before studying the site. My seemingly innocent post is about the nuts and bolts of survival:
Here's a question I never see anyone answering: How many of us are able to work and make a living?
I'm only a few weeks from diagnosis, and trying to get a bead on where this meningioma thing is going to go and what it's going to do.
How many of us are financially ruined by our decline in health?
I'm the primary provider for my family, and we live a big fat middle class life -- mortgage, cars, college savings plans, the works.
What happens to it? Does it all go by the boards? How are all of you coping with the money side of things?
What I want to hear is reassurance -- stories of people who trimmed their sails bit, made minor adaptations, and been able to keep themselves occupied and money coming in.
What I get instead are letters of deepest foreboding, grim welcomes to a land of sorrow and confusion. Some of the responses I get are not from people with meningiomas, but their spouses, partners, parents, and, in a few cases, their survivors. They tell a uniform tale of underestimating the weight of the load they have been asked to carry.
Several letters stand out, for the sorrowfulness of their plight, and for the thorniness of their thought. "I had to put thinking behind me," Rose, a one-time screenwriter in the Pacific Northwest, writes. The intelligent horror of her communication hauls me out of denial like a gasping trout:
Excuse my stream of consciousness. I don’t have regular e-mail, because I use Web TV instead of a computer. It doesn’t have cut and paste, so you combine that with the loopiness my tumor engenders, and everything just kind of comes out in a euphoric string. Your location and mine are so different. Think of mine as seat of intelligence smack-dab at midline plus my sinus, too.
Making a living changes. I used to write films. Now I collect interest on a few bonds, and rent on a couple of dinky vacation homes along the Oregon coast. Since it’s not an actual job, the income I get does not contribute to Social Security – therefore I can’t qualify for Medicaid insurance.
Did you know Christopher Reeves has to work? He has no insurance, either. His wife has to work, too. Reality.
Another writer, Thad, a former salesperson in Macon, writes about his financial dilemma:
I had an individual indemnity policy but they declined to renew it. Then I was refused because my condition was preexisting – nice tactic. I had no fallbacks such as Veterans Administration, or spouse working or group plan. I am falling thru the cracks – falling and falling. You can't hide or give away your little bit you stashed away. Never had enough money to do any fancy trust planning. You learn you can’t trust others. When word gets out that you are sick, you see vultures on every branch outside your window. They hear tumor and think you are a goner. Which isn’t true, but try telling them that.
After a while you let your pride slip away. You make minimum initial payments on everything medical. It is their power against yours. Be strong. Don’t read your mail.
Karen, who worked in radio in the Canary Islands, wrote:
Some of this is bitterness at my lack of foresight. We all think we’re invincible, but we’re just clay pigeons. Get over it.
By all means put on your Brave Face. Support your family and caregivers. To give is to receive and all that. You’re the man of the family – it will be hard to start taking. It could be worse, you could be a woman. Not everyone is loved. Ninety percent of women with brain tumors are dumped by their spouses. Children desert. Not many women desert, but a few do.
My John has not left. But the stress is great. He has me here and an 86 year old mother dying across the country, and he stays with me. I was always strong, and he loved that about me – now I wonder what he sees.
You choose one, you tear apart from the other. Choices and tearaparts!
John's dog Pal is dying of congestive heart failure. We have no children, so Pal is our child. John is a Viet vet and has weathered monsoons, but he has never felt the wind blow like this. Everywhere we turn something or someone is dying.
Big wind's ‘a-coming, Michael – best brace yourself for change!
Bill, a classical saxophone player in New York, wrote me a letter so frightening and so depressing, I can't quote from the worst of it. But toward the end he explains his pessimism this way:
Sorry for the tone. The way I write is the way I think now – a symptom of the falx tumor. I seem never to get my intent across, no matter how much I say. Deeper and deeper, but never deeper. I am a long-term patient of watching my brain change. The view changes on both sides of the window.
Santa Ana said, “Show no quarter,” as he played the Dequello, the Mexican death march, for 24 hours before he attacked the Alamo. It is not enough to die. You have to think about it first, long and hard.
The letter writers talk 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 rag-pickers, selling off their possessions on the Internet auction sites.
Most are not in danger of dying, but all have had their lives affected catastrophically by the things inside their heads. Many have had multiple craniotomies, as one meningioma was removed, only to have another grow in its place, or two, or three.
Some people experience permanent losses – to speech, to memory, to coordination, to vision. I get letters from people with tumors affixed to their optic nerves, like a giant squid encircling a submarine, and halting its progress. Not one has been able to return to his or her job, the way things used to be.
The effect of these letters -- I would get 20 to 30 every day -- was incalculably corrosive.
"I don't understand," I write the list. "My doctors tell me that meningiomas are treatable."
"Don't tell me," one correspondent says -- "The kind of tumor you want to have if you have to have a tumor. Right? They should be ashamed of themselves. Did you know the five-year survival rate for a meningioma is only 35%? That if you cut one out, two may grow in its place? That far more are malignant than doctors let on? Stick around the listserver, you've got a lot to learn about meningiomas."
"Oh come on," I say. "You think there is a conspiracy to keep me in the dark about my own condition? If there's a conspiracy to deceive me, what's the motive? And what about my wife? She's a nurse practitioner -- is she in on it, too? What's her motive?"
"They talk happy talk, because they don't have meningiomas," is the answer I get. "No one wants to face the truth about them."
I subscribe to the meningioma listserver for about a month, and become very attached to several score of people. Many send me heart-tearing testimonials about their struggles, and many tell me that they appreciate my stories, that I have helped them think through issues.
But at the end of the month, I pull the plug on it. These people have scared the living hell out of me. I no longer know what to believe. I am even discounting what Rachel tells me about my condition, thinking she is protecting me from the awful truth.
Medical professionals roll their eyes when you tell them about Internet chat sites. "Anecdotal, unrefereed information," is how my doctor Tim dismisses it. "Even if it is good, it isn't good for you."
"The worst stories appear to be typical, and visitors have no way of noting that discrepancy," Rachel says. People having an especially hard time haunt these sites, like the ancient mariner at the wedding, demanding that guests hear their horror stories.
But that is not to say that the stories or the suffering is untrue. And in that sense, the damage, to my confidence and clarity, is done.
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
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