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Sunday, October 19, 2003 - Page updated at 12:00 A.M.
Life on the waiting list: Teacher bides precious time
DIARY OF A TRANSPLANT: More than 17,000 people in the United States need a liver transplant. Jack Slater is one of them. His life depends on the serendipity of an organ donation that is the right match and comes available at the right time. As time unspools toward that unknown, Jack will chronicle what it's like to wait — when waiting is a matter of life and death. This is his first entry.
A story by Jack Slater
We heard the rattle of the mailbox, so I went downstairs, sandwich in hand. I opened the mailbox door and there it was the letter I had been expecting for almost two months. I pulled it out and stared at the envelope. It seemed to glow in my hand. I kissed it and said a quick prayer for the hope it had to offer. For it to say I had been placed on the waiting list for a liver transplant.
I HAVE HEPATITIS C, a nasty, blood-borne virus that attacks the liver, eventually killing it and the person in whom the liver resides. By that May morning, I had endured six months of tests in one of life's more ironic contests: trying to prove I was healthy enough to earn my place in line for a donated organ.
The only known treatment for "hep C" involves daily injections of interferon. The side effects are nasty and the cure rate is roughly 20 percent. My disease is sufficiently advanced to make the odds of a cure much lower and the harsh treatment not worth the odds.
Now my only hope is if somebody out there dies the right kind of death: one that leaves the liver intact. The person who dies needs to be healthy and needs to die when I'm healthy enough to be approved for, and survive, a grueling surgery. The person needs to have my blood type, be about my size and have had the foresight and kindness to register the desire to be an organ donor.
Of course, I wish you a long and happy life. But if that doesn't happen, well, someone out there could use your lungs, heart, valves, eyes, skin, bone, tendons, kidneys and liver. It's an amazing world we live in.
I HAD NO SYMPTOMS when I was diagnosed with hep C in 1997. That same year I was hired to teach history at Seattle's Franklin High School, a job that brought my life full circle.
I learned the gift of gab selling men's shoes at my father's store in West Palm Beach, Fla. I was a history and education major in college and taught adult ed for a year before I hit the road, Jack Kerouac style. I stumbled into acting, which I did for 20 years: movies, television, commercials, a bit of stand-up political humor. It was fun while it lasted, but no way for a grown man to live.
I had long harbored this notion of moving to Seattle, where I could drink good beer at the Virginia Inn and play softball at Green Lake. And in 1991, I did just that, after falling in love with the woman who has been both my dream and my wife for 12 years. After teaching at the King County Jail and as a substitute teacher in the Seattle schools, I landed this great gig at Franklin.
Teenagers are fun and exasperating and bored by un-hip education. Reading is slow; computer games brilliantly quick. It doesn't help that many parents are chronically broke or that many teachers are close to broke.
But teaching has its perks. It feels righteous to chaperone the prom. We hear great concerts by the jazz band and see wonderful stage productions. We see talented kids mature and add a few inches from year to year. We miss them when they graduate.
Teaching history has been made even more exciting by world events. Each day, it seems, the front page offers earthshaking news that can be connected to the culture, social movements and wars of the past, that connects people in the Middle East, Korea and Texas. Every chance I got, I taught African-American history. It's in our face every day. We must learn it well. All of us.
So when I was told I had hep C, I quit drinking doctor's orders and poured myself into teaching. For almost five years, I was happy and symptom-free.
THEN, IN LATE 2001, I GREW TIRED. Impossibly tired. School starts at 7:45 a.m.; I had trouble getting out of bed in time. Driving home after school, I found myself dozing at red lights. A medication I was taking sent me on frequent trips to the bathroom; it's not cool to be late for class or to leave in the middle.
By May 2002, I had to stop working. I was calling in sick too often to be any good to my students. I had trouble reading. Grading papers took more energy than I could muster. I had grown pale and thin and suffered bouts of encephalopathy: toxins, not processed by my failing liver, lodged in my brain, resulting in bizarre behavior, like peeing on the floor, and ambulance trips to the hospital of which I have no memory. My muscles began to atrophy. I was no longer the mighty force on my over-40 softball team or a dazzling dinner-and-dance partner.
I excused myself from a dinner party once to lie down for a bit. When my friends woke me four hours later, I didn't know where I was and barely knew who they were, so they took me to the hospital, where the doctors gave me some medicine and asked if I could name the president and my wife's birthday. I insisted wrongly that her birthday was the same as mine. But as a way-left liberal, I am obsessed with George W. Bush, so the president question was a no-brainer even for a person temporarily deprived of his brain.
For five years, my condition had seemed little more than background noise. Now it reared up as what it really was: end-stage liver disease. I experienced nausea, cellulitis (which turned my lower left leg black), severe fatigue, swollen abdomen, legs and groin. Not all at the same time, and not in any pattern I could predict.
The only thing predictable about the course of hep C is that it's downward.
I figured I was an excellent candidate for a transplant. I am not a smoker. I had negative colonoscopies and endoscopies. I breezed through the blood tests, CAT scans, DEXA scans and echocardiograms. I presented myself to the hospital's social worker as an emotionally stable person with a wife and friends who would provide round-the-clock care for two to three months after the surgery. And I have insurance: Transplant surgery costs upward of $350,000.
There would be a light at the end of this very dark tunnel. I was in a hurry to get to it.
"We regret to inform you ... "
I flung the letter at my wife and let out a roar like unto death itself. I threw the sandwich into the refrigerator as hard as I could. I wanted needed the atavistic thrill of exploding tuna.
But I was denied even that small satisfaction. The sandwich shot past the bottles and jars and Tupperware and landed neatly in its plastic wrap. I should count myself lucky, because once you start wiping up great wads of tuna salad from the walls of your refrigerator you might as well clean the whole dang box. That's too wretched a task even on the best day of your life. I wanted to pick up the refrigerator itself and hurl it out the window. Maybe I could hire three or four guys from the Millionair Club to heave it through the window for me. Nothing less would express how rotten I felt.
I was dying of a monster blood virus and I didn't want anything but my rightful place in line for some poor, dead guy's liver that would otherwise go to waste.
Maybe I should go to Spain where there are no motorcycle-helmet laws and livers aplenty. The waiting list here is very long. Whenever a state decides to make motorcycle helmets mandatory, organ donations plummet. Other things conspiring against me: a drop in gang violence, lower speed limits in Montana, people mellowing out through meditation and yoga, automobile air bags and the Department of Homeland Security.
This kind of thinking leads to madness. Let it go, let it go.
I PICKED UP THE LETTER. It said I was not good transplant material because, over the course of my life, my use of alcohol was considered excessive.
What? I hadn't had a drink in five years. Even in my younger, wilder days, booze wasn't a big deal. Sure, I enjoyed my beer. But beer with pizza after a ballgame isn't drinking, it's a picnic. Wine with dinner? Of course. But never had a DUI. Never had an accident.
I asked the transplant folks to define "excessive." Their answer: Drinking more than one glass of wine a week, smoking or using any illegal drug was a sign of chemical dependency.
I begged to differ, so I was sent to a specialist who determined that, in fact, I was not chemically dependent. I now have an official paper stating that I am not an alcoholic or a drug addict. Do you? I'm like the guy who gets released from the mental hospital and is given a paper saying that he is no longer "mental." He has proof he's not crazy. Do you?
But they have their rules. And I have this lousy liver.
So I went to AA. It was pretty good. The people I met there were caring, thoughtful and intensely honest. When I finally gathered the courage to speak at a meeting, I suggested that part of the reason we drink is because we are awash in media fairy tales of relentlessly happy couples sipping cocktails on virgin beaches or of beautiful women who will be your pal for the night if you just drink the right beer.
I was shouted down. In AA, there are no excuses. Just tell your story and sit down.
That's what I did. And on the day before Thanksgiving wonder of wonders and hallelujah! I was welcomed onto the transplant waiting list.
They gave me a pager. I felt halfway cured.
IT'S BEEN ALMOST A YEAR. There is no way to know when a liver will show up with my name on it. I need to be good to go at all times. Think about it: I could be talking on the phone with my parents in Florida and beep! beep! my pager goes off and life changes forever. They'll just have to hold their breath, take a long walk and pray until the next phone call.
A few hours later, I will emerge with a pre-owned liver and a regimen of expensive medicine, frequent hospital visits and unpleasant complications.
Everyone has complications. And I will always have hep C, but my new liver will buy me some time before it, too, becomes diseased. The oddsmakers give me an 85 percent chance to make it a year; 67 percent to make it five years.
But that all presumes I survive surgery. What if there's a problem with the anesthesia or an infection or some simple mistake? Maybe I should write in permanent marker on my stomach LIVER RECIPIENT!, along with my Social Security number and blood type just in case. What if my body rejects the liver? What if people bring me balloons with Tweety Bird on them?
I had polio when I was 6. We were living in Chicago then, and I was sent to a hospital for what seemed like months. I remember thinking the nurse, Miss Tripp, was mean and that hospitals were such sad places.
They still feel sad to me: the matter-of-fact doctors and their eager interns; the janitors who scrub the floors and don't make eye contact; the guy in the next bed who watches dopey TV shows; the awkward visits by his relatives and minister. We, the sick, look at those who are not as if they won the lottery and we won the wheelchair. Even the floor-moppers have it better than we do.
Oh, to be able to mop the floor.
For months after I got sick, I divided the world into those who have hep C namely, me and the rest of the world. I felt bitter, alone and alienated from all that is fun, beautiful and tender. It must be how combat veterans feel. They know things that they don't want to talk about and we don't really want to know. I live in my own little combat zone and I am the walking wounded.
It took months before I told more than five or six friends. This disease is common among drug addicts who use needles. I could imagine minds at work, speculating, judging. I really am not certain how I got it. And once you have it, the how doesn't much matter.
So now I tell everybody. Let them speculate. Let them judge. As if one dying man is more tragic than another.
All my life, I've been blessed with a light heart and a positive attitude. I love James Thurber, P.G. Wodehouse, Mark Twain and the cartoons in The New Yorker. I love Laurel and Hardy, Erma Bombeck, Monty Python, Lenny Bruce, Richard Pryor, Bill Cosby and "Catch-22." I own a whoopee cushion, a red nose and a beanie with a bicycle horn glued on top. I once worked as a street clown with a group called Free Public Laughs in Chicago.
Every time I laugh, I feel my guts being bathed in milk and honey and my mother's chicken soup. Sometimes I'll bump into one of my wise-guy friends and he'll say, "Hey! You're not dead yet?" It's OK. I laugh. I laugh at this rotten disease and curse it, rip out its throat and kick it down the stairs. And then I laugh some more.
Laughter is strong and it heals. There is scientific proof. Read Norman Cousins' "Head First: The Biology of Hope and the Healing Power of the Human Spirit." Read "Laughter is the Best Medicine" in Reader's Digest. Need I say more?
My wife and I are blessed with friends who overwhelm us with their generosity. They help pay insurance premiums and bring us homemade meals on wheels. They give us tickets to the opera and ballgames. Two friends work through our combined Rolodexes each month, encouraging small gifts of cash and time. Former students send wall-sized sheets of paper scribbled with good wishes and poems. One student wrote "To Mr. Slater. R.I.P." He wants me to Rest. In Peace. If it sounds right to him, it sounds right to me.
I was never one to send teddy bears, books or blankets in the wake of hurricanes, earthquakes or bombings. Bless those who do. I shall join their ranks. For this is my earthquake. I must take the pills, exercise, rest, laugh frequently and start sending those teddy bears, and whatever else the Red Cross says it needs.
LIKE YOU, I'M NOT READY TO DIE. And this wasn't supposed to happen to me.
If there was any justice in the world, surviving polio should have given me a pass on dramatic diseases for the rest of my life. It left me with a slight limp, but it exempted me from the draft during the Vietnam War. I've lived an active life but am not a thrill-seeker. A comfortable chair and a good book are always preferred over activities requiring helmets, snowshoes or even golf clubs.
And in 1997, when I was 51, I did the right thing and got my over-50 physical.
Two days later, the doctor called to order a follow-up visit. I imagined a stern talking-to about prostate cancer and cholesterol levels. Turns out those things were fine. But my blood and enzyme numbers showed I had end-stage liver disease. Then the doctor explained what "end-stage" means.
I left the office and drove to Alki Beach. It was raining, and I was grateful for that. A beautiful day would have been like a slap in the face. I remember the gloriously wretched smell of low tide. I sucked in the smell of the rotting sea world. Misery loves wretchedness.
So this is how it's going to happen for me. A long, daily death. I've had a few friends die of AIDS, a few of cancer, a couple by suicide and one from hang gliding. Now it's my turn?
A SLOW-MOTION DEATH IS NOT HOW I IMAGINED my life would be, or cease to be. It allows for too much contemplation. I prefer to "be here now." Big questions of cosmology and cosmogony are best left alone.
But these days, I can become obsessed by death. I could die on the surgery slab, an actor's last scene in an operating "theater." Or l could be one of the 2,500 sick folks who die each year waiting for a new liver.
And of course there's still time to be run over by a truck.
At Alki that day, and many times since, I have found myself confused, sad and defeated, alone with my whoopee cushion and James Thurber. I imagine conversations that go like this:
Say, Leroy, did you hear that Slater died?
No kiddin'? Man, Slater was a real stand-up guy.
Yes, he was good people. I'll miss him.
Yeah, me too. Listen, I'm kinda hungry. You wanna get somethin' to eat?
Yeah, sure. Let's go.
That's how it is and how it's always been. How soon they forget. So I imagine my funeral and hope that people tell the best stories about me and describe me well in all my complexity. I think the wake should continue for about a week. If I have any money left, I'll leave it for the catering. Lay me in a hammock with my arms folded behind my head and the ballgame on the radio. Or bury me in a plain box under some rosebushes to atone for my sometimes lazy approach to recycling.
My brother says he plans to defy the maxim that says you can't take it with you. He wants me to dig a big hole and put him and all his possessions in together. I will do it for him if he gets run over by that truck before I do.
I don't care much about material things. But what about all my book learning, street smarts, good intentions, the search for meaning, the love received? It seems like such a waste to have it thrown in the grave with me. Any love I have given I know will last forever. There is comfort in that. Too much time at the office? Not I. I was dancing, singing, having dinner parties, making art, planting a garden.
So why me? Is there a cosmic reason? Or is it just my time to get out of the way and free up a parking space?
The answer is there is no answer. Just suffering and, if you are lucky, meaningful work, good friends, a few opportunities to love and time to plant tomatoes.
IF I SOUND HOPELESS AND GRIM, keep in mind this is not some treatable case of prostate cancer. This is me falling down on the sidewalk and bleeding to death because my blood will no longer coagulate (highly unlikely except in my overworked imagination). I look for hope, laughter and love in the neighborhood of my heart, but I live in the shadow of the valley of death. I look at my neighbors in Ballard, and they give me joy and tuna casseroles.
About a week after Sept. 11, 2001, I was scanning the shelves of the Elliott Bay Book Co. Few of the titles seemed relevant to this new world reality. How could I buy a book about the Civil War or the flowers of the Sahara? Here we were, alive in Seattle, trying to understand why some 3,000 of us were dead in New York. A generation of war was soon to come and attention must be paid. We are on red alert every day.
In some ways, this world in turmoil has taken the pressure off me. Now we all have a dis-ease. We are all targeted. Every lone lunch bucket on the sidewalk warrants a call for the bomb squad.
I feel the same way every time I have a nosebleed.
LAST YEAR, MY DOCTOR TOLD ME I HAD TWO TO THREE YEARS LEFT to live with my diseased liver. I said, "WHAT?" He said three years is a long time. He is from a country where the average life expectancy is 57 years.
I am 57.
My doctor is a good man and I have come to like him enormously. I reminded him that in this country, we spend billions on medical research and have the best of everything at least those of us with insurance and expect to live very long lives. I said that in three years, this country will see a whirlwind of change and I want to be there for it. I want to see if they discover weapons of mass destruction in Iraq. I want to see the Mariners win it all someday. I have planted a small star jasmine whose vine will grow slowly and produce enough blossoms that will waft sweet springtime delight into our bedroom. That will take at least six to seven years.
The doctor smiled and said, "I understand. But you have hepatitis C."
On the drive home, I threw up. It wouldn't be the last time.
Jack Slater 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 firstname.lastname@example.org.
Seattle Times photographer Alan Berner can be reached at 206-464-8133 or email@example.com.
To reach an editor about this project, contact Jacqui Banaszynski at 206-464-8212 or firstname.lastname@example.org.
Copyright © 2003 The Seattle Times Company
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