If Death Is Certain, How Do You Live?

PHOTO Seven months before he died at the age of 21, William Zarifi reflected on the extraordinary events that had both blessed and cursed his too-brief life.Courtesy Zarifi Family
Seven months before he died at the age of 21, William Zarifi reflected on the extraordinary events that had both blessed and cursed his too-brief life.

Seven months before he died at the age of 21, William Zarifi reflected on the extraordinary events that had both blessed and cursed his too-brief life.

An essay found in his laptop after he finally gave in to brain cancer last October described how learning how to die had taught him how to live.

The handsome, 6-foot-2 honors student at the University of Southern California mused that he had been born lucky. His father was born in Kabul, Afghanistan, and had "lived in a small, bathroomless, 2 room home with his five brothers and sisters and abusive father" before escaping to the United States and building a successful construction business in Arizona, he wrote.

By contrast, Will grew up in million-dollar homes, went to the best schools, never had to want for anything.

He was lucky, he admitted, but the luckiest day of his life, he wrote, came on Feb. 19, 2007, "The day I found out that I had brain cancer."

The story of Will's life, and death, is the story of many these days who are faced with unthinkable decisions. If death is certain, is it best to ignore treatment and live life for the moment? Or should you fight, knowing the odds against you are horrible?

Dying Is More Art Than Science

There is no consensus, even among medical professionals.

Various studies have shown that doctors have as much trouble dealing with the death of a patient as the rest of us. Communicating with grieving survivors, the studies show, is difficult for everyone. So dying, it turns out, is more art than science.

Most stories probably begin the same way -- shock, disbelief, anger, withdrawal.

"I was a 19 year old student who had never broken a bone or even had surgery," Will wrote. "I didn't know what to do. I just sat down and cried."

But he soon changed. Will decided to fight his cancer down to the last breath. It must not have been an easy decision. The outlook was bleak, indeed. At 19, Will was considered a terminal case.

"A lot of doctors recommended that we do nothing," recalled his sister, Linda, an architect. "He should accept the fact that he's lost the battle and stop all treatment."

'On the Verge of Death, Life Changes'

But some, including doctors who were friends of the family, urged Will to follow his own instincts. So the fight was joined, and members of the family insist they never looked back.

"When you are on the verge of death, life changes," Will wrote in his essay.

Will was diagnosed with a very aggressive brain cancer that in rare cases spreads to the spinal fluid and rapid deterioration. In the following months, he went through two brain surgeries and chemotherapy, while maintaining a 4.0-grade-point average at USC.

Word of his fight spread across the campus, and classmates turned up wearing bracelets labeled "Will Power." A couple of billboards appeared in Los Angeles, also proclaiming "Will Power." His basketball coach gave him a bracelet that asked him to "Never Give Up."

His condition improved dramatically, Linda said.

"He was back playing basketball, his hair had grown back, and we forgot that he had brain cancer," she said. "He had put on 50 pounds and he was going to the gym every day. He looked fantastic."

The Family's Roller Coaster of Emotions

But Will's fight wasn't over. The cancer spread to the spinal fluid.

"It was a huge hit," Linda said. "It was devastating. We sat in a room with the oncologist and my dad asked how long William had to live. What are we looking at? She said 'I don't put a timeline on people's lives. Only God knows.'

And then the "emotional roller coaster" the family was riding, as Linda put it, soared up. A new treatment with chemotherapy from Duke University proved positive and the cancer disappeared from the spinal fluid. But a short time later, it was back.

"He had been doing better, and we thought we really did believe in miracles," before the cancer returned, Linda said. "Do you know how many times we heard that he was going to die and he lived. How many times we heard that the cancer was terrible and it went away. How many times we heard that he was doing great and he was really doing terrible.

"It was a roller coaster of emotions: miracle, devastation, miracle, devastation."

Living With Hope Until the End

With one semester to go before graduation, Will returned home to Tucson. He had a seizure and was admitted to a local hospital.

"The doctor came to us and said he was not going to make it through the night," Linda said. "It's time to say goodbye. Everybody was devastated, shocked. We asked, 'Isn't there anything we can do?' He said, 'No. There's nothing you can do. Take him to hospice and let him die.'

"He ended up living for five more months," Linda said. "Those were the best five months that we ever had."

Radiation treatment continued, because Will thought discontinuing it would be a sign of giving up.

"Two weeks before he died I threw a giant party in the house," Linda said. "He had cake, ice cream, and we did everything we could to just celebrate. His room was filled with people, 10 to 20 people. We bought a puppy. We've never had a pet in our lives, but we bought a puppy."

When death finally came, Will was surround by friends and family.

Fighting to Surive Kept Him Alive

"It was a beautiful passing," his sister said, because he lived with hope until the end.

"Hope is a funny thing," Linda said. "It stems from despair."

The family insists Will never lost hope, and it was the fight to survive that kept him alive for at least a few more months. He wrote that he was not a religious man, but the fight itself became his religion.

"Brain cancer has taught me a great deal about life," he wrote in his essay. "It has been a blessing in disguise. I am just a 20-year-old college student, but I feel like I have the wisdom of an 80-year-old grandfather. It was unfortunate that to learn how to live, I had to learn how to die."

Will's essay reflects a desire to leave something behind that would make this a better world. He didn't have much time to do that. But he left a mark. Two of his classmates have gone on to medical school.

His girlfriend, who spent every day and every night by his side when he was in the hospital, is studying to be a nurse.

Maybe the fight isn't over yet.