The public responds with an outpouring of love and many offers to help

By Jack Slater
Special to The Seattle Times

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So when The Seattle Times asked me to write about what it's like to live with hepatitis C — what it's like to know my life ultimately will depend on someone else's untimely death, and on that person's foresight in registering as an organ donor — I figured it would be easy.

I have told my story to many people through the years. I always try to tell it in such a way as to lessen the discomfort of the listener. I tell a few jokes and zip through the tough parts. Brevity is the soul of all wit, after all.

I express confidence that all will be well in the end. I don't want my friends to worry even though, bless their hearts, they do. Then they add to the humbling cavalcade of cards, letters and prayers sent my way. A friend of my wife's has connections to a convent of nuns in South Africa who regularly raise up my name in prayer. Amazing.

I was glad to have an assignment, and eager to know if I could write something good enough for publication. I sat in a chair for hours on end, writing and re-writing. When I wasn't writing at the keyboard, I was writing in my head. I spent many hours with Seattle Times photographer Alan Berner, and many more with a Seattle Times editor.

Three days before publication (the story ran on Sunday, Oct. 19), we declared it done. You could stick a fork into it. I went to the newsroom to watch the designers place it on the page. We were all pleased with it. I argued that one of the photos made me look like both of my grandmothers (hepatitis C has robbed my health, but not vanity) but didn't prevail.

It happened that my wife was out of town on business the day we put the story to bed, so I stayed overnight with friends. I need someone conversant with my disease to be close at hand in case I have some serious health incident or if my beeper suddenly goes off, alerting me that a donated liver has become available.

And things can change while I sleep. When I wake up these days, my wife asks me a few math questions to see if my thinking has been affected by toxins that may have invaded the mathematical neighborhood of my brain. Being alone is not recommended.

My friends provided an excellent meal that night and we told important and funny stories and then went to bed.

I couldn't turn off my brain. It had become a habit to lie awake, writing in my mind. But there was nothing to tinker with now that the story was finished. And without that pleasant distraction, I got stuck on one phrase.

The words "I have hepatitis C" fell on me like a ton of bricks; that can hurt a person. Likewise the tonnage of the line "this virus kills the liver and the person in whom it resides." Then the full smackdown: "My only hope is a liver transplant."
 
I started to cry. Alone in someone else's bed in someone else's house without my dear wife waking to ask, "Honey, are you crying?" Seeing those words in print was like hearing the doctor all over again when he first told me I had the disease. Here I was about to be on the front page of the paper spilling my guts and I had forgotten that the words were more than clever turns of phrase. Those words were me.

I woke up the next morning with a severe case of cellulitis, resulting from a break in the skin that allows bacteria to come on in and do its worst. This was my second bout of this junk. Both times it took hold around my ankle, making it difficult to walk. My friend took me to the hospital, where I was given an antibiotic drip while we all watched in dismay as the area turned red and swollen. The hits just keep on coming.

See what happens when you stop laughing? There I was in bed, crying as a result of examining my life ever so briefly, and I got hit in the face with yet another fetid pie. Along with Socrates, however, I do believe that the unexamined life is not worth living.

But here was the other shock: Self-examination on the front page of the Sunday newspaper is an invitation to the world to examine my life, too.

I had not considered that this monologue of mine would become a dialogue. A few years back, I wrote a lengthy remembrance of high-school days for my hometown paper and received no response. Zip. I guess I figured the same thing would happen here.

Boy, was I was wrong. Within days, I got e-mails from more than 200 people from all over the country. I heard from friends long lost and almost forgotten. I want to respond to everyone, so if you have written me please be assured that I will, as soon as I am able.

The first e-mail I got was from a guy who told me I should move back to Chicago, where I once lived, but that he was glad that The Times had featured a piece about a white guy who is not a Boeing or Microsoft exec. I don't know what to make of all of that but I bet that he could use a good course in African-American history.

A woman unclear on anatomy wanted to know my blood type and said that, if we were a match, she was willing to offer me her liver.

One person wrote just two words: "Thank you."

I heard from many nurses wishing me well and offering advice. People were happy to read of the love I have for my wife. They told me how lucky we are to have so many supportive friends. Many told me their own stories of living with hepatitis C and said they did not have such a strong support group and wished they did.

I heard from a lot of people who claim they no longer have the virus and credited various non-Western medical treatments. I am interested in knowing more about that. Wouldn't it be nice not to need a transplant and to be rid of the virus, too? There is a lot of research going on and someday someday ... maybe life will be normal. I would like to make it super-normal and drive a motorcycle and a sidecar with my wife across the Gobi Desert.

Some of the most heartening mail came from hep-C sufferers who said the article helped their families understand them better. Some are angry because they can't get no satisfaction from their doctors or clinics and they feel ignored and doomed. Some say they will deny all medicine and just pray and hope for a miracle. Others wrote that they have been sick, depressed, shy and stuck in self-loathing and that the article made them laugh and take charge and seek some lust for life and love for themselves.

Many people told me they are going to include me in their "prayer chains." And, oh, my goodness, some have offered money.

One guy wrote me that he had $27 million in the bank and wanted me to help him get it out of Saudi Arabia. That old scam. I wrote him back saying just this: "Please be ashamed of yourself." I mean really.

People wrote that I was brave to reveal so much. I truly feel I risked nothing.

Sure, all of this makes me feel exposed. But it also makes me feel a little less alone.

More than that, I am impressed anew with my brothers and sisters, diseased and disease-free, who are brave, scared and loving given half a chance. Keep it up, pass it on, don't give up and all of you, please, get a blood test. So many are unaware they have this disease.

If you're healthy, agree to be an organ donor.

And please wear your seat belts.

Copyright © 2003 The Seattle Times Company