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.

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A friend of mine writes me telling I have a terrific story to tell, and I should contact his editor, at a national newspaper famous for the length of its stories (short) and its use of color.

So I wrote a brief essay and sent it in. The title: "How to tell your kids you have a brain tumor." It was about the importance of being very clear, optimistic, but also candid. I thought it was good, and I thought that the topic, my connection to the editor through my friend, and my brilliance as a writer pretty much guaranteed a nice check.

"We very much liked your essay," the editor wrote back to me, by e-mail. "But I'm afraid we have to say no. There are so people with ailments of one sort or another, that we have made the editorial decision to focus on first-hand accounts of celebrities only."

It was wise to tell me this in e-mail, because on the phone I would have responded acidly: "I'm so sorry that this ailment is not afflicting someone better known, and God knows that Tom Cruise or Nicole Kidman, if they both had brain tumors, could put the experience into words much better than I."

But I sat on my anger instead. What a stupid world we live in, I thought, that requires the additional "juice" of fame to pay attention to a story that is already about life and death.

But the issue of celebrity doesn't go away. One night I flick on the TV, and Barbara Walters is on. It is the week immediately following her ratings smash interview with Monica Lewinsky. The whole world tuned in to that vapid broadcast, so Walters knew she had to come up with someone good as a follow-up - to show that she made Lewinsky, and not vice versa. It has to be someone glamorous, world-renowned, and yet still sympathetic.

Could it be … Elizabeth Taylor?

It can be and it is. Madonna and Marilyn and, yes, Monica would all eat their hearts out if they, like Taylor, could monopolize the public eye as she has, through six decades of gossip, crisis, and the strange melange of Egyptian beehive hairdo stardust and shiny violet-eyed humanity that Taylor exudes.

She is not just a queen of multiple facelifts. She is someone who has actually suffered, quite a great deal, in fact, and she speaks with the authentic vocabulary of suffering. It gives her, out of all the talk-show wannabees queuing up for their moment in the bright lights, street cred. It makes her a person.

And it ain't just the six divorces. It ain't just the pills and booze. And it ain't just from being Michael's friend. It isn't even from her long association with and support for people suffering from AIDS.

Liz Taylor has a brain tumor, a meningioma, just like mine. She has had at least one craniotomy at this writing. That much appeared in the papers, and for many readers, that story must have sounded the death knell for a major star. We folks with meningiomas know it was serious, but not quite that serious -- but for much of the world, a brain tumor is an automatic death sentence.

It would have been a terrific opportunity for Taylor to pause, and explain, through her spokespeople, if necessary, what a meningioma was, what it meant for her.

She didn't do it, and the brain tumor support group I belong to was put out by this. This was before I joined - the following conversation was relayed to me.

"Here we had a celebrity of the very first magnitude," said Anne. "And a great chance to do some education about brain tumors, and she kept her mouth shut. Thanks a lot, Liz."

"I understand some people from the association asked her to speak up about it, and they were told that Miss Taylor has decided not to make a thing about brain tumors, because se's already so identified with AIDS," said Terry. Terry knows everything, especially if it's about Liz Taylor. "It's so important to her. She doesn't want that compromised."

"I disagree," said Marie. "I think it's all for our consumption," said Marie. "Being a spokesperson for AIDS makes her seem like an angel of show business. Actually having a brain tumor is a threat to her career. She doesn't want to be known for that. So she bailed out. Either that or Liz, about whom we know virtually everything there is to know, has suddenly become private about her life, for reasons of personal modesty. Which I doubt."

"What is it," asked Marty, "that keeps famous people from wanting to acknowledge their brain tumors? Is it a desire for privacy, or fear of scary publicity, or not feeling up to the demands of being a spokesperson?"

"I'll bet they're just scared shitless and feeling sick as hell," said Nona. "They see their lives going down the toilet, they've been healthy as horses all their lives, and don't think they have what it takes to reach out and help other people."

And that was how we compiled a list of celebrity brain tumors. Everyone knew someone who had a brain tumor, or remembered reading something over the years. I posed the original question - "What famous persons have had brain tumors?" and everyone chipped in with a name or two.

Show business provided the lion's share of stories.

For openers, said Katie, there's Roddy McDowell, a good friend of Taylor's, who died of a brain tumor in 1999.

"My mom says Sandy Duncan had one a long time ago," said Faye.

Bert Convy, actor and 70's game show host passed away from a brain tumor. But Nell Carter, comedienne and singer, beat the odds and survived.

Eve, a lifelong fan of George Gershwin ("the greatest composer who ever lived," she called him) reminded us that he died in 1937 of a brain tumor.

Pat Paulsen, the deadpan onetime Smothers Brothers sidekick, and oft-time presidential candidate (slogan: "We Can't Stand Pat") died of brain cancer in 1997.

Someone clipped an item from a rock and roll Who's Who reference: "Reggae star Bob Marley of the Wailers died of a metastatic brain tumor at age 36 in 1981."

French film director Francois Truffaut (Jules and Jim, The 400 Blows, The Last Metro) died in 1984 of a brain tumor.

Journalist Judd Rose, of ABC's Prime Time Live, is surviving a grade 2 glioma tumor.

"Dirk Benedict, star of Battlestar Galactica and several other TV shows, now lives in our state of Montana," wrote Al. "Ten years ago he was suffering from a so-called incurable cancer. He cured himself through a microbiotic/macrobiotic diet. He wrote a book about his experience, Confessions of a Kamikaze Cowboy."

Sometimes the person with the brain tumor wasn't famous, but their spouse or parents were. Comic actor and talk show host Charles Grodin's first wife died of a glioblastoma multiforme. Rene Sharkey ( Ringo Starr's daughter) is a survivor of some kind of brain tumor.

"I remember reading that the brother of designer Tommy Hilfiger had a brain tumor," said Kay. "I read it in September, I think and, of course, I don't remember his first name and whether I read he died from one or just that he had one."

"Add to your list the father of Harris Barton," said Lloyd. "Barton was a star player with the San Francisco 49ers. He is active in the National Brain Tumor Foundation, sponsoring an annual walk around Angel Island, a State Park in San Francisco Bay.

This gave me the idea of looking up the phrase "brain tumor" in CD-ROM encyclopedias, like Grolier's and Encarta. Using this method I found mentions of:

• Otto Klemperer (1885-1973) partly paralyzed following an operation for a brain tumor in 1939, Klemperer often had to conduct in a sitting position. (His son was Werner Klemerer, Colonel Klink on Hogan's Heroes.)
• William Vaughn Moody American poet and playwright whose mystical and dignified work was considered a sign of unfulfilled promise upon his early death
• Anthony Burgess British novelist, critic, and man of letters (b. Feb. 25, 1917, Manchester, England--d. Nov. 22, 1993, London, England),
• Lucia Popp Czech-born Austrian lyric soprano (b. Nov. 12, 1939, Uhorska Ves, Czech.--d. Nov. 16, 1993, Munich, Germany),
• Arlene Aoger, operatic and concert soprano
• Eva Hesse (1936-1970), American sculptor and painter

I had to admit I had never heard of the last three, which perhaps puts a dent in their celebrity status. One entry suggested that either Roberto Alagna or Angela Gheorghiu world-famous French tenor and Romanian soprano, had a brain tumor. The two created their own personal operatic libretto with a highly publicized romance that resulted in marriage in May, 1996.

Jan wrote: "I remember seeing an article about the President visiting with the U.S. Ambassador to Norway because he had just been diagnosed with a brain tumor, I don't remember his name, though."

Right in the midst of our compilation, the film critic Gene Siskel died. He had acknowledged being treated for a tumor several months before, but had not released any information about it, referring to go on with his business. For this reason many of us assumed he had a "chronic treatment" tumor like my own relatively accessible meningioma.

When he died rather suddenly, no information was given out to the press. Still, rumors surfaced. One of our group believed he had a glioblastoma multiforme, frontal lobe, the prognosis for which is usually from one to two years.

Politics claimed its share of victims. Sen. Joseph Biden had a arteriovenous malformation, which acts just like a tumor. Senator Strom Thurmond's first wife died of a brain tumor in 1960.

"Senator Arlen Specter from Pennsylvania had a meningioma treated with Gamma Knife," wrote Ellen, a constituent from Reading.

Someone recalled that House of Representative member Frank Tejeda died of a brain tumor.

"Everybody remember Lee Atwater?" my friend Gerry offered. "He was George Bush's campaign hatchet man."

Indeed I did. Atwater's reputation was for being quite brilliant as a tactician, quite pleasant as a friend, and quite brutal as an opponent. The notorious Willie Horton TV ads, blaming Dukakis for letting a murderer out of prison on furlough so he could go on another murdering and raping rampage, were the product of his perhaps already tumorous brain. For this he was accused of playing the race card, whipping up fears of black crime to capture white votes. He was also a pretty darn good rock and roll guitarist, performing at victory celebrations and other events. He was pals with B.B. King - an unlikely duo.

"I read that when Atwater was dying, he sent messages to people he had bashed in campaigns. Now that he was suffering, he understood better the pain his tactics caused, and he begged them all for forgiveness. Many made the trip to his bedside, and Atwater tearfully apologized to all that did."

• "NFL founder Pete Rozelle died of a brain tumor. That's the only one I can think of," wrote in someone identifiying himself or herself as just Namaste.

• Lyle Alzado, NFL linebacker and B-actor, died of a brain tumor in 198_. Alzado was criticized for steroid abuse as a football player - which he steadfastly denied, until he was diagnosed with terminal cancer. It was an object lesson in hubris seeing this giant of a man reduced to tears and despair by the shortcut he took to fame and fortune.
• Josh Gibson, slugging catcher of the Negro Leagues, sometimes called the "black Babe Ruth" (1911-1947).
• Screwballer Dan Quisenberry, the witty submarine pitcher for the Kansas City Royals, was diagnosed with a glioblastoma multiforme in late '97 and had 80-90% resected. But it was too much for him, and by the winter of 1998 he succumbed.

• Another member of the Royals, manager Dick Howser, succombed to a malignant brain tumor in 1986.
• Fritz Von Erich, who invented the "evil wrestler" role for the World Wrestling Federation in the 1960s and '70s, along with a handful of evil wrestling holds, such as the "camel clutch" and "the claw," died of a brain tumor in early 1998.
• Tim Gullickson, American doubles champion with his brother ____, saddened the tennis world with his rapid deterioration and death in 199_.

• Eric Liddell, the British runner celebrated in the Oscar-winning movie Chariots of Fire, who won a gold medal in the 400-metre run and a bronze in the 200 metres at the 1924 Olympic Games in Paris. Asked the secret of his sprinting speed, Lidell replied, "I can feel God's power working through me."

We couldn't always remember who exactly was famous. "A female basketball star with the Houston Comets of the WBA was recently diagnosed with a brain tumor," wrote Larry, a big sports fan.

• Dawn Steele, the head of Columbia Pictures, and described by some as the "most powerful woman in Hollywood," died after a 2 year fight with a brain tumor in 1997.
• Gerry Pencer, the founder and CEO of Cott Corp., the 4th largest beverage company in the world, and the company whose formulas routinely beat Pepsi and Coke in blind taste tests, died in early 1998 of a glioblastoma multiforme tumor.

Surely, I asked, from all these names, it would be possible to select a celebrity spokesperson for the brain tumor cause.

And for several weeks the e-mails flew. Everyone had a favorite candidate spokesperson. We even held an election. The thinking was that a straw poll conducted on the Internet would b enough to persuade someone famous to reorganize his or her life and spend the lion's share of the rest of it speaking out on our behalf.

Then I saw the following note, from Jeanette.

"Folks, I think we've gone overboard. Sure, it would be great to have Elizabeth Taylor on our side.

"But let's not forget who the real heroes in this battle are. My life has been changed forever, and for the better, by some of the people I have met in this group. Tyler, Cheska, Zuzu, Amy, Mary, Rebecca, Mike, Keith, Scott, Matt, David, Carol, and many more. They weren't famous. But they brought commitment, courage, dignity, humor, and every bit of humanity they had in them to the fight.

"If we ever get a chance to really be heard and acknowledged, I pray it will not just be the Liz Taylors who are heard. Because she hasn't said a word about this to anyone, while friends I have made here have gone to their deaths trying to help me to live. If we were really good, if we were really communicators, we'd get that message across, and not elect some movie star to speak our dying words for us."