Life on the waiting list: Dreaming, ruminating, cultivating patience

Editor's Note: Jack Slater is a husband, teacher, actor, artist, baseball fan, gardener — and hepatitis C patient. For more than a year, he has been on a waiting list for a liver transplant. He is chronicling his personal journey through this life-and-death wait in occasional essays for The Seattle Times. He last wrote (Dec. 3, 2003) about the loss of his belly button and other physical surprises. He recovered from a severe attack of bursitis in time to spend the holidays in Michigan with his in-laws. As he continues to wait for a donated organ, he also is waiting for his spring garden to bloom: 54 tulips, 100 daffodils and 27 irises. Today he meditates on the treasure and threat of time.

By Jack Slater
Special to The Seattle Times

	ALAN BERNER / THE SEATTLE TIMES Jack Slater carries a one-month supply of Kristalose, a supplement he takes five times daily, from a pharmacy in Ballard.
	E-mail this article Print this article Search archive Related stories Archive: Life on the waiting list: Reflections on navel removal, importance of organ donation Archive: Life on the waiting list: Enduring the highs, lows of a much-needed liver transplant Archive: Life on the waiting list: Teacher bides precious time

Think of my liver as one of those Firestone tires that caused so much trouble for Ford Explorers awhile back. It's defective and has been recalled. I am on the waiting list for a replacement — the gift of some good soul who, upon his or her death, lets someone else keep living.

Until that happens, I have to drive very carefully through life lest I have a blowout.

Meanwhile, I have to wait.

And while I'm waiting, I have too much time to think about waiting. I see signs of it everywhere: Stop signs. Yield signs. Detour signs. Waiting for light rail and monorail. Waiting for the first Tuesday in November and cars that get 50 mpg and the next earthquake to hit.

Waiting is my new hobby. It's what I do every day. It's not a completely passive life, but it does color my world. That's why I paint with bright colors and grow masses of flowers and write red-hot letters of outrage to various pundits.

	Dr. Darrell Fader, left, assisted by Jamie Hacut, prepares to take a skin sample from Jack Slater at the Skin Cancer Clinic of Seattle.

I'm a baseball fan, and the wait for my "new" liver seems like one of those close games that could go either way. The only thing you know for sure is that the ninth inning is coming. And when it does, the ending will be happy or tragic — or leave me longing for extra innings.

I have been waiting now for 1-1/2 baseball seasons. I wait without the accompanying benefit of a cold beer. No alcohol for me for the rest of my life.

I am even waiting in my sleep. I dream of casually sipping a beer and then ... OH NO! NOW WHAT? I MESSED UP FOREVER!! I dream of being in New York City and ... OH NO! WHY DID I COME HERE? HOW AM I GOING TO GET BACK TO SEATTLE FOR THE NEW LIVER PHONE CALL???

I get night sweats waiting in my sleep.

Time to ponder

I need a liver transplant because I have the hepatitis C virus, or HCV, and have developed end-stage liver disease. I was first diagnosed in 1997, so I have had a lot of time to consider love, hate, God, fate, time, life and the Big D — death. Some days, I see a world where everything is just as it should be. Other days, I curse the rotten luck, the passage of time and the lack of peace that passes beyond all understanding.

Like to be a donor? LifeCenter Northwest has information about how to become an organ donor, including registering online: www.lcnw.org

There's a lot of rotten luck that can plague baseball, as if it, too, has a disease. I'll bet that Ken Griffey Jr. ponders his luck frequently. It seems that every year he gets seriously hurt. Meanwhile, more than 7,000 Americans die each year simply because there aren't enough transplantable organs being donated, or they are too sick to accept a transplant. Of those folks, almost 2,000 need new livers.

After a loss, baseball players are fond of saying, "We just gotta put this game behind us and focus on tomorrow." For us players in the Major Leagues of Disease, there is no guaranteed tomorrow. Our contest can go into extra innings, or can prematurely end in a loss because time has run out. Game called on account of darkness. But time is seldom a part of baseball, which makes it even more attractive to us hep C players. (Football games that are tied at the end of the fourth quarter are decided by whoever scores first in overtime. They call it "sudden death." Yikes.)

The wait in baseball can be 12 foul balls in a row, or generations of "Wait 'til next year!" Ask the fans of the Chicago Cubs, the Boston Red Sox or the Seattle Mariners.

"Wait 'til next year!" is my anthem, too. Go skiing? Next year. A long weekend in the mountains? Next year. Sit on the beach with friends in Los Angeles? Next year. Replace the batteries in our smoke detectors? Takes too much energy. The same goes for taking a shower. Maybe tomorrow.

	ALAN BERNER / THE SEATTLE TIMES For Jack Slater, a visit to a friend's hot tub is "physical and mental therapy. It tends to stop the chatter in my brain."

We are all waiting for something good to happen. We developed the DNA for waiting while ruminating in the mud for billions of years, waiting for one of us to develop better thumbs and a better brain so that one day the rest of us might have art and ice cream. Cubs and Red Sox fans must feel they are still in the mud. Generations of close-but-no-ice-cream.

While waiting in waiting rooms, we try not to wait. We wait daily for someone to discover a long-term cure. Waiting for the results of our last blood test is awful. Way too often, hep C seems to be followed by liver cancer. So every six months, those of us in the league have a CT scan. If you develop cancer, you can be moved forward on the transplant waiting list — unless the cancer is too large. Then you can be cut from the list altogether.

So you wait for the test, then you wait for the results and hope you are allowed to start waiting all over again. I just had a CT scan and remain cancer-free. If I had developed a tiny lesion or two, I would be bumped closer to the top of the list. But I remain stable. You win some and you lose some. I just want to break even.

Against the universe

Baseball players are taught to wait for "their" pitch.

We are all taught to wait for our ship to come in.

	After a carcinoma scare, Slater visits Dr. Darrell Fader of the Skin Cancer Clinic of Seattle.

We are taught that patience is a virtue. I'd rather practice the virtues of humility, temperance, forgiveness, valor, spirituality and take that all important vitamin L: Love.

I worked as an actor in L.A. for 20 years, and the waiting in that game can make you neurotic. It's said that the sexiest word in Hollywood is "no." It always keeps you coming back for more. When they finally say "yes," you will spend 99 percent of the day in your little trailer waiting for the crew to adjust the lights or for the director in his large trailer to finish talking to his girlfriend.

There are a limited number of roles an actor is right for. Likewise there are just so many livers that are right for me. It's why they call it the waiting list.

I am extremely happy that people are granted extended life through organ transplants. I am sad for the relatives and friends of the donor. There are a lot of very strong families out there on both sides of this waiting game, and the day is coming when I will join them. I can't think about that angle right now, but I hope you can. Maybe my liver will come from the relative of someone who might have read this series, like you. I hope you don't think of me as too irreverent or glib. I promise to take very good care. Let me acknowledge your kindness right now. And I am truly sorry for your loss.

These are the facts of my waiting-list life:

1. I probably will not get a liver any time soon since my health is relatively stable. (Famous last words.)

2. Because my blood type is O-positive, the so-called universal blood type, my wait will be longer. If an O-positive liver becomes available and there is someone with a rarer blood type (A or B) on the transplant list, he or she likely will get that liver before I will. To wait for an A- or B-type liver could be to wait too long. So it's me and my universal blood type against the universe.

Acting at being ready

It turns out there are many lists. There is the O-positive list, the body-size list, the how-sick-are-you list, the just-the-right-amount-of cancer list, the good-luck list and the God-willing list. These days my list is groceries, exercise, dentist, Father's birthday, another blood test and CT scan.

On the Web You can read earlier installments of Jack Slater's diary on www.seattletimes.com/jackslater

Sometimes — too often — people suddenly discover they have advanced hep C and face imminent death without transplant. I agree, of course, that they should get cuts in line ahead of me. We all must swing with the ethical decisions being made by those with the tough job of deciding who gets what organ. They don't care if you have been a junkie and/or a Supreme Court justice; they want to help all comers — as long as they know you are serious about playing by the rules.

You must pledge that you will never smoke, drink or mess around with illicit drugs. If you can't pass random urine tests, they will give the liver to someone who can. Someone like me. A gift as rich as a donated liver and the extraordinary skills and resources needed to plug it into you are reason enough to play by the rules.

Am I ready for a transplant? No. I don't think that's possible. As healthy as I am right now, I am not fully conscious of the damage inside me. They have billboards with pictures of smokers' lungs that look like chunks of magma. But what does my poor liver look like?

All my life I have quipped: "What am I? Chopped liver?" Well, now I guess I have one. Maybe if I could see a picture, I would feel more eager for a transplant. But as it is, I am not ready to leave my warm bed for the great big scary hospital.

Jack Nicholson once said to my acting class: "Stay ready. You will get your shot." I'm a pretty decent actor, so I'm acting at being ready. My bags are packed for that hurry-up trip to the hospital. But once there, I'll have to lay in bed and wait for everything to come together — for the papers to be signed and for the enema and for the speech that tells me to keep hope alive and for the goodbye thumbs-up to my wife. Then I'll be wheeled down the hall helpless and all too aware of the flip side of the night's activities: Some good person just died.

I am not quite desperate enough. Not yet. I can wait.

No, I can't.

Yes, I can.

Keep hope alive.

Trusting in spring

How do actors stay ready? They take classes, and they wait tables.

Christians wait for the Second Coming. Jewish people are waiting for their Messiah.

About this project • Jack Slater, 57, is on a medical leave from the Seattle Public Schools, where he teaches history. He was born in Chicago, graduated from Calvin College in Michigan and worked for 20 years as an actor and humorist. He has been a community and political activist and is an avid artist and gardener. He lives in Ballard with his wife, Deborah Swets, the executive director of CityClub. You can reach him at jslater@seattletimes.com • Seattle Times photographer Alan Berner can be reached at 206-464-8133 or aberner@seattletimes.com • To reach an editor about this project, contact Jacqui Banaszynski at 206-464-8212 or jbanaszynski@seattletimes.com

My friends are waiting along with me. They are very supportive, but we are all getting a little tired of this mess I am in. So I ask about the mess they are in, and it becomes clear that they are waiting, too — for a boyfriend to make up his mind, for a job, for the landlord to fix the stairs.

All good things come to those who wait. Spring will come and the daffodils will appear. It took me many winters living in the Northwest to trust enough in spring that I could plant bulbs in November. Now I look forward to the earth's annual reawakening to the call of the hot little robins on the grass, and to the reappearance of the bugs and bears. Maybe a hot new liver?

Then there's this R&B hit by Wilson Pickett about some guy who tells his girlfriend she's gotta "wait 'til the midnight hour, when my love comes tumbling down." What's this guy doing before midnight that's so all-fired important, making that poor girl wait so long? The guy says he's going to do all these nice things that he told her. He wants to kiss her and hold her. But she has to wait 'til midnight? What if she needs to get up early? Waiting for the party to begin at midnight makes you pretty slow at work the next day. Maybe their love should start tumbling down around 7:30 p.m.

In how many wars have the people been told that if they can just wait until Christmas it'll all be over?

They said our Civil War would be over by Christmas. It started in April 1861, three months after Lincoln was sworn in as president. It lasted until April 9, 1865. Six days later, Lincoln was dead.

The British were told that both WWI and WWII would be over by Christmas of their respective first years.

On Oct. 1, 1952, Gen. MacArthur asked people to wait because the Korean War would surely be over by that Christmas. It ended in July of '53.

In 1972 the "light at the end of the tunnel" was commenced by President Nixon (and you and me) by bombing Hanoi on Christmas to hurry along the peace talks. We know how that one came out.

Forgive this riff, but I am a high-school history teacher on medical leave, and I don't want to lose my touch. I tried to keep my classes interesting, but every day my students would sigh with impatience and glance again and again at the enormous wall clock. They were always waiting for class to be over — six classes a day, five days a week. At the same time, they were waiting for lunch, for a three-day weekend, for summer break and for their last day as a senior.

These days, in America, more than 20 percent of kids drop out of high school before they finish because they have given up waiting for something good to happen.

Sleep and dreams

So what do you do while you wait?

John Lennon said: "Life is what happens while you're making other plans." For hep C patients, the decision of what to do while waiting is pretty much out of our hands. Our energy is so low that we often sleep half the day. This cuts down on the opportunities to obsess on life — our present life, the next life or our past life. It's very difficult to make plans. It's why they call us patients. It's one of the Virtues.

So we try not to wait for the phone to ring and try not to think that every call could be the call. But the longer I wait, the more I obsess and the more anxious I become.

The trouble with serious disease is that it limits your ability to fulfill lifelong fantasies. There is no last fling I can take if I want to be available for a transplant. I have never been to the Hermitage in Russia or visited the Holy Land. I have never danced in the bistros of Kinshasa or the tango bars in Buenos Aires. I should have gone when I was first diagnosed, but I was recently and happily married and that was tango enough.

So I am committed to this life on the waiting list. And I gotta dance with them that brung me this far. I must stay in that long-term groove of trying not to wait.

I wait to be able to make long-distance plans or to visit my folks in Florida. I wait with those who have family in Iraq. I wait for the baseball season to begin and the war to end. No tango in Argentina for me. Not yet, anyway.

Of course, I could slick back my hair and take dance lessons at the local YWCA while I wait for the grim beeper to call me to the used liver store. I should get that transplant, then get me to Buenos Aires as a well-practiced dancer.

Carpe diem because tempus fugit.

Copyright © 2004 The Seattle Times Company