Living Breathing Smiling Proof

by Jeffrey Marx

November 27, 1989. She is everything in the world to me - my little sister, only sister, and best friend, all wrapped up in one - and now she is unreachable. She is right here before my eyes, yet so distant, in a deep coma, hours from death. Her brain is swollen and damaged, her arms and legs lifeless. A machine is breathing for her, pumping air in and out of her chest, and doctors are performing tests to see if even a sliver of hope remains. It does. But time is running out.

Despite all of my prayers and despite all of the medical technology in this building, I have accepted the realization that there is only one way Wendy will have a chance to survive. I am not one to wish harm upon another human being, and certainly not one to wish death, so this troubles me deeply. But Wendy means too much to me. She has been reduced to a pile of flesh, and I know exactly what she needs to start fighting for a comeback. The thought will not vanish: For Wendy to live, the right person has to die.

Half a year earlier, Wendy Marx had graduated from Duke University, full of hope and promise, confidence and uncertainty - a delicious combination produced only by the young and strong. She drove from New York, our home, to San Francisco, where she wanted to live for a while. She moved into a rowhouse with friends, started working for a marketing firm, and began exploring her new city.

Wendy had always been independent, eager to try something new, ready to see and learn, then talk about it, and living on the West Coast, she had a whole new set of stories to tell. Wendy was always excited about something she was doing or planning. But then she got sick.

Wendy was generally tired, her stomach did not feel right and she was not hungry. At first, though, we didn't think much of it. This was just after the biggest earthquake in decades had rocked San Francisco, and we figured that Wendy might be having a emotional response.

Unfortunately, we were wrong. We soon learned that Wendy was feeling the early effects of Hepatitis B, which she had contracted from an unknown source. Within days, she was hospitalized. Within weeks, her liver was destroyed. Soon after she slipped into a coma, her doctors told us that without a transplant, Wendy probably would not live more than 24 hours.

My parents, brother Jim and I stood vigil by Wendy's bed in the intensive care unit of the Pacific Presbyterian Medical Center in San Francisco . . . waiting . . . waiting . . .waiting. We kept waiting to be told that an organ donor had been located and a liver was on the way.

Prior to this, we had known nothing about organ donation and transplantation. Now, under the worst possible conditions, we were being forced to accept the reality of a major problem in the United States: the critical shortage of organ donors.

Nationwide, Wendy was one of 787 people waiting for a liver, and one of 18,943 people waiting for a transplant of some kind. The outlook was awful.

With Wendy fading away and parts of ourselves being destroyed with each tick of the clock, we could not sit still. If we could somehow reach the public with information about Wendy, making an appeal for a donor, maybe that would make a difference.

But how to reach the public? I thought of Carl Lewis, the Olympic sprinter and friend, who had been following Wendy's progress by telephone. He agreed that a public appeal might work. But it would have to be quick. We would have to make the late television news.

Carl immediately flew to San Francisco and together we held a press conference at the hospital. The story - Olympic champion pleads for help to save young woman's life - became national news.

Two years earlier, Carl had lost his father to cancer. That had been so difficult, watching him slip away without being able to do anything. Carl could relate to what we were feeling, but also knew that this was different. The ability existed to make Wendy healthy again.

Carl would not leave to the hospital until Wendy had a liver. And we made a promise to each other. With or without Wendy, we were going to keep working to increase public awareness of the need for donors. Of course, the ultimate dream was for Wendy to survive and be able to participate with us in that effort.

The severity of Wendy's situation had catapulted her to the top of a national computer list of people waiting for organs. A few hours after the press conference, one of the surgeons told us that a liver had been found. Never before had I felt such a rush of relief.

But at three in the morning, minutes before Wendy was to be wheeled into the operating room, the surgery was called off. The liver to be transplanted had been damaged in the automobile accident that killed the donor. It could not be used. We were back to nowhere.

My parents, brother and I kept taking turns talking to Wendy, gently rubbing her hands and arms, wanting to believe she could somehow feel our energy and love, hoping that as stubborn as she had always been, she was not about to give up now.

But the doctors were not at all optimistic. Wendy's brain, poisoned by toxins normally cleansed by a healthy liver, was swelling beyond control. It could burst at any moment. We were told to prepare for the worst.

Instead, after a morning full of despair, we got the best: another liver. The donor was a nine-year-old boy. And the liver was in good shape.

Still, there were no guarantees. Doctors gave Wendy only a 50/50 chance of surviving the surgery and, even if she did, they would offer no guess on the likelihood of her ever coming out of the coma. She was that far gone.

After nine hours of surgery, Wendy was doing pretty well, her new liver functioning, starting to reverse the damage that had been done. Once again, all we could do was wait . . . but what a better wait this was. After days of doing nothing but slipping away, Wendy was finally on the road to recovery, headed in the right direction.

The next two days were incredible, watching Wendy struggle to become herself again. First, she opened an eye. She moved her fingers, then an entire arm. She started breathing without the assistance of life-support machines.

Out of nowhere, she opened her mouth and spoke. "They won't let me eat." Four days in a coma, no idea where she was or what was going on, and that was all she had to say. I looked forward to the day I could tease Wendy about her first words.

There were still plenty of obstacles to overcome. Wendy hallucinated wildly for a few days, sometimes had trouble speaking, and memory loss was a major problem early on. But the damage to her brain turned out to be completely reversible.

She encountered rejection, her immune system saying no to the new liver, but although Wendy suffered through several dangerous reactions to anti-rejection treatments, doctors were eventually able to handle the problem.

Wanting to shield Wendy from additional worries, we avoided discussing details of what she had been through. We thought it would be better to fill her in gradually.

But a nurse offhandedly mentioned to Wendy how lucky she was to have someone like Carl Lewis visit her. This confused Wendy, and she told the nurse she must be crazy - Carl had never visited her. "Of course, he did," the nurse replied. "I have an autograph to prove it."

I hurried the nurse out of the room, shut the door and started explaining. Coma for days? Twenty-four hours to live? A press conference? Her story all over television and the newspapers? Wendy was blown away by what she was hearing.

She cried, tears of understanding, tears of horror and relief, tears of love and appreciation. She could not help but thinking about the little boy who had died, the pure generosity of his family in a time of such grief.

Right then, looking in Wendy's eyes, I knew that the ultimate dream was within reach. Wendy would indeed be participating in our effort to increase public awareness of the need for organ donors. In fact, she would be the focal point, living, breathing, smiling proof that organ donation works.

Toward the end of her hospital stay, Wendy started lobbying for a Victory Tour. She knew Carl had taken one after the Olympics, and she too wanted one, a week or so on the East Coast to visit friends and relatives. That was the only way she could begin to thank them for their thoughts and prayers, in person. And it was the only way she would be able to convince them that she was really okay.

Wendy also wanted to meet Carl. They had heard so much about each other, had been talking on the phone, but other than the days Wendy was in the coma, they had never been in the same room. The highlight of the Victory Tour - bringing Carl and Wendy together - was set for February 9, 1990, before a track meet at the Meadowlands in New Jersey.

Carl was not competing but had been invited to sing the national anthem. In turn, he had invited Wendy as his guest. She knew Carl was going to sing but did not know what else he had planned. When Carl was introduced, he took Wendy by the hand, led her to a platform next to the track and held her tight.

"Before I sing," Carl said, "I want to introduce you to a special friend of mine. This is Wendy Marx. She is 22 years old." And he told her story, ending with this: "When you get home and have a chance to sit with your family, I hope you will take a few minutes to talk about organ donation. That would mean a lot to me, and to people like Wendy and their families."

The place was silent. A few words from a gifted athlete, a glimpse of a young woman whose life had so recently been renewed, and I just knew that people were getting the point, absorbing it, and that some of them would later act on it.

Carl paused. Then he sang, still holding Wendy near, her sweater punctuated by a button saying: "Don't Take Your Organs To Heaven. Heaven Knows We Need Them Here." That was definitely the clincher. If ever we needed a catalyst to move forward with our plans to reach people about organ donation, that was it, those few powerful minutes at the Meadowlands.

During the next two months, we formed the Wendy Marx Foundation for Organ Donation Awareness, a non-profit corporation; started raising money to support a transplant fellowship program for doctors; and teamed up with National Kidney Foundation to work on the 1990 U.S. Transplant Games, of which Wendy and Carl became honorary co-chairpersons.

The 1990 Games, three days of competition in nine sports, drew about 400 transplant recipients to Indianapolis. Wendy played tennis, and it was absolutely thrilling to watch her dump a double fault into the net, then smile. It was equally exciting to watch her lose, then laugh about it, because that's what happens when it is almost a year after the doctors gave you 24 hours to live, and you are out on a tennis court, losing. You laugh.

Never before had I seen a group of people participating in a variety of sports with such intense joy. There were some great athletic performances. But those were not the performances that kept playing in my mind. The feats I will always remember were those that brought equal doses of cheers and tears.

A 12-year-old boy with a new heart beating in his chest leading most of the way in a 50-meter-dash, then falling, but still managing to flop across the finish line for third place. A 28-year-old kidney recipient crossing the finish line in the race-walk, hand in hand with another woman, co-winners on the track and in life. A liver recipient, legally blind, collecting swimming medals, including a gold, and Louisville basketball coach Denny Crum presenting the medals, all choked up, along with everybody else who was there.

Since then, the Wendy Marx Foundation has conducted donor awareness programs in a dozen states, involving school, community and corporate groups. In addition, Carl and Wendy do numerous television, radio and newspaper interviews to promote organ donation.

We are producing an educational video for nationwide distribution to junior high school students, and we are creating the U.S. Sports Council on Organ Donation, which will include a wide variety of well-known athletes, coaches and sportswriters.

Members of the council will assist the foundation with national projects and serve as regional spokespersons.

No matter what we are doing, however, I never lost sight of the fact that Wendy's well-being is always top priority. Unfortunately, that deadly Hepatitis B virus, our worst enemy, still lingers within her, silent and potent.

In January 1992, it again threatened her life. After an uncontrollable flare-up, Wendy needed another transplant. This time, she was fully awake and aware, defined by her will to survive but consumed by the fear that the numbers alone might seal her fate.

She was one of the 1,657 people waiting for livers up from 787 the first time around. She was one of 24,930 people waiting for a transplant of some kind, up from 18,943.

Again, in the most twisted of scenarios, Wendy was at once cursed and blessed by the severity of her illness, too sick to last much longer without a transplant, sick enough to move quickly up the list to get a liver.

Once again, we accepted with limitless gratitude the selfless generosity of a donor family we would never meet. Wendy battled and survived. And we knew exactly what we would be doing as soon as she felt up to it: doubling our efforts to increase public awareness of the need for donors, parlaying her near death experiences into a powerful message of hope for others.

About the Author

Jeffrey Marx, a Pulitzer Prize-winning freelance writer, is co-author of the Carl Lewis autobiography Inside Track: My Professional Life in Amateur Track and Field. He is co-founder of the Wendy Marx Foundation for Organ Donor Awareness and co-chairman of the U.S. Sports Council on Organ Donation.