A good death

For Stephen Keale, death was always close by. Living was about preparing for it.

This photo of Stephen Keale with his teacher, Sogyal Rinpoche, was taken during a retreat at Clear Lake in 2002. Keale requested the photo because he was about to undergo PegInferon treatment, knew it would be terribly difficult and wanted a picture of the rinpoche to put on his home altar.

This photo of Stephen Keale with his teacher, Sogyal Rinpoche, was taken during a retreat at Clear Lake in 2002. Keale requested the photo because he was about to undergo PegInferon treatment, knew it would be terribly difficult and wanted a picture of the rinpoche to put on his home altar.

The earliest known written references to hemophilia appeared in Jewish texts of the second century. Rabbinical rulings exempted boys from circumcision if two previous brothers had died of bleeding after the procedure. The 12th-century Jewish physician Moses Maimonides applied this ruling to the sons of a woman who had married twice, in apparent appreciation of the hereditary nature of the condition. Ironically, hemophilia means “love of blood.”

In her 1997 book Graceful Exits: How Great Beings Die, a compilation of 108 accounts of how various Hindu, Tibetan and Zen masters passed away, author Sushila Blackman includes the story of the Japanese Zen master Taji, who died in Tokyo in 1953.

The master’s senior disciples were gathered at his bedside as he approached death, she writes. One of them offered him a certain kind of cake he was known to enjoy. Master Taji took it and weakly began munching.

His disciples asked him whether he had any last words for them, as was customary. The master said he did, and they “leaned forward eagerly so as not to miss a word.”

“My, but this cake is delicious,” he said, and then he slipped away.

To die with such presence, living so fully in the moment right up to the end, is a Buddhist ideal. It is an ideal Stephen Keale, a Chico man who died last November at the age of 36, shared with conviction. From the time he was a child, death was close by, and his effort to understand and accept it gave meaning and richness to his life.

The first time Stephen’s wife, Susan, saw the book Graceful Exits was on November 30, when she went to Clear Lake to pick up her husband’s body. He had been attending a Buddhist retreat when he died, and she found a copy among his possessions.

That didn’t surprise her. Stephen had been preparing to die for many years. And, like the people described in the book, he wanted to live well and then die well, with fearlessness and full awareness. Susan says she was sad that he died apart from her, but she also understood that it was what he would have wanted, to die while on spiritual retreat, in the company of his teacher and 500 fellow practitioners.

Outwardly, Stephen Keale was an ordinary man. Those who didn’t know him well might have thought it odd that such a young man walked with a cane, but otherwise he didn’t seem unusual.

Stephen and Susan Keale in Amsterdam in 2001. They had a wonderful time, despite his drug-induced nausea and severe arthritis.

Privately, though, he was an extraordinary person, as the hundreds of people who came to his memorial ceremony, held in a Chico funeral-home chapel, well knew. All his life he’d been sick, and it was impossible not to think that God or fate or simply bad luck had dealt him a terrible hand. Yet he’d somehow managed to be a happy person. The photos of him attached to two display boards in the chapel showed a slender young man with a sweet face who seemed to be smiling in every picture.

During the ceremony, an emotionally delicate but determined Susan Keale tried to describe in a nutshell the kind of man her husband was. She began by talking about their first date. It was a first date like no other, she said, and it turned her life around.

A few weeks after the ceremony, sitting at the dining table in the cozy, art-filled Chico home she shared with her husband, Susan told the story again—the whole story. She is a slender, soft-spoken woman with short blond hair and deep-set blue eyes; as she talked, they sometimes filled with tears. She began her tale with the day she and Stephen met in Mount Shasta City.

It was the summer of 1994. On a break from her job at a health-food store, she entered a local jewelry shop, hoping it could sell a ring for her. She’d inherited it from her grandmother, but she didn’t like the cut of the diamond and didn’t wear it. Stephen, who worked there, stepped forward to help her.

The setting wasn’t worth much, but the diamond was valuable. It took two weeks to sell, however, and in that time Stephen and Susan saw each other several times, mostly when she’d come in to see about the diamond. There was a tingle, an interest, so they arranged to have dinner at his place.

She prepared a vegetarian meal and brought it to his apartment. They talked for a while about different things, and then Stephen began telling her about himself. And, because of the remarkable nature of his life, it was like no conversation she’d ever had on a first date. “He just laid it all on the line,” she said.

He was nervous, she could tell, but he didn’t waver and didn’t try to sugarcoat his words. He had been born with a severe form of hemophilia, he told her, one that was difficult to treat. Then, as a teenager, he had contracted both HIV/AIDS and hepatitis C from the blood plasma he’d always used to treat the hemophilia.

Hemophilia. HIV/AIDS. Hepatitis C. Stephen carried a trio of terrible diseases in one body. Susan just listened as he slowly told her the story of his life. And she saw how hard it was to tell these truths to someone he cared about, knowing that he stood a very good chance of frightening her away, as—he later told her—he’d frightened other women away before.

Susan was scared, to be sure, but she felt other emotions, as well. “I was so impressed by how kind he was, how willing to be vulnerable,” she said. “He had such integrity. … I thought, ‘This guy is great.’”

Stephen at Camp Cazadero for hemophiliac children in the mid-1990s, where he was a popular arts-and-crafts teacher.

Stephen had finally met a woman with courage equal to his own. Three weeks later, Susan said to him, “You know what? I think we should get married.” They drove to Reno. As they were walking into the justice of the peace’s office, they saw a young man wearing a T-shirt that read “No fear.” They took it as an endorsement.

They were married for 10 years. During that time, Susan watched as Stephen prepared himself for dying.

Most people associate hemophilia with inbred European royal families, but that’s a misconception, said Marty Keale, Stephen’s father. In fact, the disease is an equal-opportunity affliction.

I met with him; his wife, Charlotte; and Stephen’s older sister, Stephanie, at a La Bou restaurant. This one was near the state Capitol and crowded with government workers on their lunch hour.

Marty, a compact, garrulous man in his 50s who wears his straight black hair in a short ponytail, is the executive director of CARES (the Center for AIDS Research, Education and Services), the primary AIDS clinic in the Sacramento area. It’s a job that being the father of a sick boy led him to.

Hemophilia is an inherited recessive bleeding disorder linked to the X gene. That means it’s carried by mothers (except in some 30 percent of cases, when it occurs as a spontaneous mutation) and afflicts boys almost exclusively, causing them to lack a factor in their blood that enables it to clot. About one in 5,000 males has the defect—as many as 25,000 nationwide and as many as 600,000 worldwide.

It’s a disease steeped in lore, much of it false or misleading. Contrary to popular mythology, for example, hemophiliacs do not bleed easily from minor cuts. Exposure to air usually suffices to heal those. But hemophiliacs do bruise easily and suffer from internal bleeding, which is more common than most people realize. We often bleed internally, but in all but the worst cases, such as severe trauma, our bodies heal without our knowing it.

Marty and Charlotte knew when Stephen was born in 1968 that he had a 50-percent chance of being a hemophiliac. Charlotte’s father had hemophilia, and one of her uncles had bled to death when a cut in his mouth couldn’t be staunched.

Testing soon after Stephen’s birth confirmed that he had hemophilia. That’s when the Keales knew, from Charlotte’s experience, that they were in for years of trying to protect a child who could bleed to death at any time and whose life would be filled with pain.

Stephen and his sister, Stephanie Mackey, were very close. In the early 1990s, they took a road trip together, stopping in Montana for this photo.

Once a hemophiliac boy begins walking, the most common problem is spontaneous bleeding into the joints—knees, elbows, ankles, shoulders, hips and wrists. It wasn’t uncommon for one of Stephen’s knees to turn purple and swell to the size of a cantaloupe.

This bleeding is viciously painful, and if it happens often enough it can lead to chronic joint disease, called “arthropathy,” and severe arthritis. Stephen had both, and by the time he died, he had the joints of an elderly man and walked with difficulty.

Some hemophiliacs have a relatively mild form of the illness and have problems only with surgery or trauma. Stephen’s disease was severe, however, and that severity became even worse soon after he was born. A hemophiliac’s bleeds are treated with infusions of plasma-based clotting factor, and he developed antibodies that blocked the activity of that very factor.

About 10 percent of severe hemophiliacs develop these “inhibitors,” as they’re called. They require very high and expensive quantities of factor to stem bleeding—and sometimes even that doesn’t work. And, because the inhibitors require the use of greater amounts of fluids, patients sometimes became overloaded with plasma, resulting in heart failure.

It’s hard to imagine the amount of stress this put on the Keales, especially Charlotte, a stay-at-home mom who took primary care of her son. “The stress was just continual,” Marty said. “I suppose for 10 or 12 years neither one of us got a good night’s sleep. A lot of families don’t make it. The husband leaves because he can’t deal with it, and the mother feels guilty because she carried the defect.”

But the Keales were strong. Stephanie was 3 years old when Stephen was born, so the Keales were veteran parents by that time. And they loved each other deeply. Fortunately, Stephen turned out to be psychologically sturdy, a boy who was determined to live as normally as possible and not let his illness get in the way. “I think he was born a strong person,” his father said.

He had to be strong. He spent much of his time in doctors’ offices and hospitals. Every time he had a bleed, he had to go into the hospital for an infusion of plasma, and he had bleeds as often as once or twice a month, sometimes more frequently.

When he was still a baby, Marty and Charlotte vividly remembered, he developed a mouth bleed that didn’t stop for three months. The doctors were ready to give up, just as they had when Charlotte’s uncle bled to death from his mouth. Then, at one of the hospitals, this “mad-scientist type,” as Marty described him, a 53-year-old researcher who didn’t work with patients, brought a canister of liquid nitrogen into Stephen’s room and sprayed it on his mouth wound.

“And it worked!” Marty said, shaking his head with amazement and relief even after all these years. “It cauterized the bleed. You know, that technique is used all the time now, but then it was revolutionary.”

Stephen refused to be limited by his hemophilia. Here he’s kayaking on the Trinity River in 2001.

On extended hospital stays, Stephen was put in a children’s leukemia ward. He could hear the kids screaming when given injections in the spine. And then they kept dying. “It became so grim,” Marty said, “with all of his friends dying.”

Despite the dangers Stephen constantly faced, the Keales tried not to be overprotective of him. His pediatrician had recommended that he regularly wear a helmet and padding on his clothing, but he resisted, and his parents, who “wanted him to have a chance to be a kid,” as Marty expressed it, didn’t force the issue.

Stephen took risks. Once he and a friend built a go-cart, and when Marty came home from work he found the boy zipping down the street—with no brakes. Later in life Stephen took up inflatable kayaking, even going down class IV rapids, and when the body-art fad hit, he got several piercings and a tattoo of a dragon on his chest that he was quite proud of.

He also liked to ski, but he paid a high price for it. Skiing in Alaska, he fell and injured his knee, which developed a bad bleed. When he treated it, Stephen over-infused himself and had a heart attack. He survived, but his heart was weakened in a way that years later would contribute to his death.

By the time Stephen was 9 or 10 years old, Marty and Charlotte were able to give him infusions of clotting factor at home whenever he had a bleed. It’s a complicated process involving mixing powdered factor with water and then injecting it, but it made their lives much easier. What the family didn’t know was that the treatment saving Stephen’s life would one day give him, like thousands of other hemophiliacs, a fatal disease. “It was so wonderful,” Marty says, “but it ended up killing so many hemophiliacs.”

That’s because the factor was derived from human blood from thousands of donors that had been pooled together. By the early 1980s the human immunodeficiency virus, or HIV, had begun to spread, and it soon tainted the factor supply. Hemophiliacs began testing positive for HIV as early as 1982, but it wasn’t until 1985 that researchers began using heat and other treatments to produce virus-free factor.

That response lag led to a number of lawsuits against blood-products companies. In the 1990s, Stephen participated in a class-action lawsuit against the Bayer Corp., charging that for economic reasons it willfully allowed people to become infected; he received $100,000 as his share of a $600 million settlement. Bayer denied any wrongdoing, saying it simply didn’t know the danger then.

By the time virus-free factor was available, some 10,000 Americans, many of them children—and tens of thousands more elsewhere in the world—had contracted HIV. Many also came down with hepatitis C, another virulent virus. It attacks the liver and in its own way is as nasty as HIV/AIDS.

One of the HIV-infected hemophiliacs was 13-year-old Ryan White, whose fight with his Indiana school when it refused to allow him to return to class after learning he had the illness became an international cause célèbre. At the time, HIV/AIDS was sometimes referred to as “the gay disease,” and there was widespread sentiment that those who were infected had somehow brought it on themselves. The emergence of supposedly “innocent” sufferers like White did much to foster public awareness that AIDS could afflict anyone.

Stephen with his best friend, Bret Leach, while on the 2001 Trinity trip. Leach’s death a year later was a terrible blow.

Stephen was 18 years old and a student at Humboldt State University, in Arcata, when he learned he’d contracted HIV. It was 1986, and by this time, Marty and Charlotte were living in Anchorage, Alaska, where Marty was marketing director for the Alaskan railway. When Stephen called with the news, Marty said, “he sort of brushed it off, but I just broke down and cried.”

Susan believes Stephen’s nonchalant response was simply bravado. “Can you imagine being 18 and learning you have both HIV and hepatitis C?” she asked. Stephen’s reaction to what amounted to a death sentence was to go on “a wild ride” for the next two years, partying, smoking dope and generally being irresponsible. “He thought he was going to die anyway, so he might as well live it up,” Susan explained. “But after a couple of years, he realized he wasn’t dying—not yet, anyway—so he had to decide how to live.”

He began exploring spirituality, particularly Eastern religions—a “New Age sampler platter,” Susan called it. He practiced yoga and read books about Buddhism and Hinduism and began to meditate. From what he told her, Susan surmises that he was trying to answer some fundamental questions about his life: What did I do to deserve this? How can I be happy? How can I face death calmly?

There were other issues, as well. Relationships with women were difficult. The women he dated were naturally afraid to become involved with someone who was so ill and could give them a fatal disease. One woman’s parents called him “a murderer.”

Then he met Susan, and his life took an almost miraculous turn for the better.

“We wondered how long she’d stick around,” Charlotte said with a laugh. “The other ones all got scared away.”

By the time Susan and Stephen got married, in 1994, Marty and Charlotte were living in Sacramento, where Marty was pursuing a master’s degree in hospital administration. “I’d wanted to be in health care since Stephen was a child,” he explained.

That led eventually, after 11 years with Mercy Hospitals, to his post at CARES, a job he got not only because he was qualified for it, but also because the clinic was looking for someone with a personal connection to HIV/AIDS.

Stephen was aware that his father’s dramatic career change was in part because of him. “I told him many times that I was in the health-care business because of him,” Marty said. CARES serves HIV-positive patients with a comprehensive program of case management, drug therapy, medical and dental services, nutrition and substance-abuse counseling, and mental-health and social services, as well as a women-only clinic. A lifetime of caring for one sick child has blossomed into a career of caring for 1,500 sick adults.

This photo of Susan and Stephen Keale was taken in the summer of 1995, a year after their quickie marriage in Reno, when the couple held another wedding ceremony in Mount Shasta City and invited family and friends.

From the beginning of her marriage, Susan said, she was “terrified of getting AIDS. I knew almost nothing about it, so I had a lot to learn. Living with Stephen, there was always lots of blood around, and needles. Sometimes his gums would bleed. All these things I had to learn so fast about taking care of myself.”

It was worth it. “I really loved the guy,” she said. “He had a great sense of humor and a really positive outlook on life. He refused to let his illnesses get him down. He wasn’t about to burden anybody with his situation.”

He would say to her, “I don’t want you to be afraid of me,” and she would reply, “I’m not afraid of you. I accept my fate.”

They moved to Chico in 1996 so Stephen could finish college. He was majoring in recreation therapy, something he’d become interested in at Camp Cazadero, an annual, weeklong camp for hemophiliac children in the redwoods near the Russian River.

Many of his best friends were men he’d met as boys at the camp. Like him, they had HIV/AIDS and hepatitis C as well as hemophilia, and they also shared a determination to expand possibilities for hemophiliacs. Every summer, they went whitewater rafting together somewhere in Northern California.

Out of that grew a desire to make such adventures available to hemophiliac boys. While he was at California State University, Chico, Stephen did all the legwork to create a new, nonprofit corporation, Disabled Adventure Outfitters (DAO), which is now based in Arcata. Stephen and his best friend, Bret Leach, whom he’d known since summer camp, hooked up with Kyle Bebb, a veteran wilderness guide, and Bill Wing, owner of a raft-manufacturing company, and began offering outings in the summer of 1999.

The organization took off, and today it offers kids with a range of disabilities, from hemophilia to spinal-cord injury, such outdoor adventure activities as whitewater rafting, kayaking, ATV riding and fishing. “It was a source of pride and accomplishment that he had helped put it together and it just kept going and getting bigger,” said Susan.

For many years, Stephen had been searching for a spiritual guide, without success. Then he had a dream, Susan said, in which a man appeared whom he’d never seen before but knew to be his teacher. This man pointed his finger at Stephen’s heart and said, “Soon.” Sometime later, Stephen came across a book called The Tibetan Book of Living and Dying. The title attracted him. Then he turned the book over to read the back cover, saw a photo of the author and realized it was the man in his dreams.

Sogyal Rinpoche—rinpoche is an honorific meaning “Precious One,” given to revered teachers—is the founder and director of an international network of Buddhist groups and centers called Rigpa. He has lived in the West for some 30 years and, like the Dalai Lama, travels the world giving lectures and personal instruction. In fact, the Dalai Lama wrote the foreword to The Tibetan Book of Living and Dying, which has become a classic of Tibetan Buddhist teachings since it came out in 1992.

Charlotte and Marty Keale at home in Sacramento. The photo they’re holding shows Stephen with his golden retriever, Dahlia.

Photo By Larry Dalton

No doubt Stephen, for whom death was always close by, was most attracted by the book’s emphasis on the importance of dying well. As the Dalai Lama writes in the foreword, “we cannot hope to die peacefully if our lives have been full of violence, or if our minds have mostly been agitated by emotions like anger, attachment or fear. So, if we wish to die well, we must learn how to live well.”

The Tibetan tradition teaches that the state of a dying person’s mind, its clarity and calmness, can influence the quality of his or her next rebirth. Helping others to die well is also important. The Tibetans have created deep meditations to foster greater awareness during death, which is considered the greatest adventure of life and proceeds through specific stages leading to reincarnation.

Stephen began taking a correspondence course through Rigpa. Then, in late 2000, he attended a weeklong retreat with the rinpoche held during the off-season at Konocti Harbor, a resort on Clear Lake known mostly for its summer music concerts. “He came back from that a different person,” Susan said, “so peaceful, so accepting. It was like he’d reached a new level of acceptance of his life, his pain.”

That was also the year Stephen received another $100,000, this time from the Ricky Ray Hemophilia Relief Fund, a $550 million fund established by Congress in 1998 to make “compassionate payments” to hemophiliacs who had contracted HIV from tainted blood factor.

The money was helpful. Susan and Stephen used part of it for a down payment on a home. Stephen’s only income was from Social Security, and it wasn’t much, though the government did pay for his medications, to the tune of $30,000 a month.

In the summer of 2001, Susan and Stephen vacationed in Holland. For about a year, Stephen had been taking a cocktail of anti-HIV drugs that nauseated him terribly, but he still managed to have a good time. He was a lifelong film buff and even made short movies himself, and when he returned to Chico he put together a short, impressionist account called A Week with the Dutch Masters, a fascinating, if herky-jerky, series of images—of artworks, buildings, people in museums, fleeting glimpses of Susan and close-ups of marijuana buds.

Stephen was a registered medical-marijuana user. The drug was especially helpful in countering the nauseating effects of the HIV medications. “Really, the only way he could eat was if he smoked marijuana beforehand,” Susan said. He purchased his pot from cannabis clubs in the Bay Area, she explained.

That fall, Stephen received an emotional blow when two hemophiliac friends, including his best friend, Bret Leach, died from complications of their diseases. The loss was painful, and so was the message of imminent mortality his friends’ deaths conveyed.

In December 2002, Stephen started an interferon-based treatment for hepatitis C called PegInferon, with disastrous results. It made him “horribly sick and depressed,” Susan said. Susan quit her full-time job and spent a year at home caring for him.

The Keale family in 1996 at the home of Stephen’s sister, Stephanie Mackey, and her husband, Chris, seated on the left with their infant daughter, Alexandra. Chris’s daughter Julia is standing between Stephen and Susan, while Marty and Charlotte Keale are sitting on the right. The Mackeys since have had another daughter, Mikaela. Stephen’s family was a major source of his strength in dealing with his diseases.

Both seemed to realize that he didn’t have much longer to live. Susan, who had taken a weekend job at a local flower shop, began feeling that she needed to plan for a future without him. When she learned the owner wanted to sell the flower shop, she and Stephen bought it. “I needed to start taking care of myself,” Susan said.

Stephen’s health was declining. At DAO camp in 2004, he was too weak and depressed to participate. He was off the PegInferon, but he couldn’t spring back, Susan said. Then, another of his good friends died. At home he was meditating as much as two hours a day, as if preparing himself.

He left for another retreat on Friday, November 26, just five days after his 36th birthday. “I had this horrible depression when he left,” Susan said, “like a huge black cloud was hanging over me.” She couldn’t shake the feeling. On Monday morning, the 29th, Stephen called to say he would be leaving the retreat early and would be home that afternoon. Susan could hear the sound of a large meditation bell ringing in the background. “I have to go,” Stephen said. “Have a good time,” she replied.

When Stephen didn’t show up that evening, she didn’t worry, figuring he’d just stayed longer. She went to bed, leaving a light on. When she woke up at 4:30 a.m., Stephen still wasn’t home. Something wasn’t right.

The office at Konocti Harbor didn’t open until 8 a.m. “That was a long four hours,” she said. When her call went through, she was told Stephen was still checked in. She left a message, and then another, but got no response. Finally, she called and insisted that someone check Stephen’s room. My husband is a sick man, she said. She was put through to a maintenance man, who was, in her words, “freaking out. He wanted to know my plans. I said, ‘What do you mean, my plans?’ ‘Well, your husband is dead,’ he said. That was how I learned that Stephen had died.”

Finally, she reached a woman named Annie, who was part of the retreat staff. Annie told her she was in the room right next to Stephen’s and that one of the lamas was with Stephen. They were doing the ceremonies that would help him in his passage through death.

Did the rinpoche know? Susan asked. Oh yes, and he was using Stephen’s dying as the basis for a teaching on impermanence, Annie replied. She also told Susan that they’d located a photograph of Stephen and were projecting it on the big screen where the rinpoche’s face had been projected, so all 500 people in attendance could see it. And the rinpoche had called important Buddhist teachers around the world, including the Dalai Lama, and asked them to pray for this young man who had died while on spiritual retreat.

This news made Susan feel much better. “Once I knew that rinpoche knew, I knew everything was OK,” she said. She called Marty and Charlotte, told them of their son’s death, and arranged to meet them at Konocti Harbor.

Stephen’s parents were devastated by the news, but they weren’t surprised. They’d known they probably would outlive their son. “For years we’d been rehearsing for that day,” Marty said.

At the retreat, a beautiful suite had been prepared for them, and food had been laid out. Marty and Charlotte rested in the suite, while Susan went for an interview with the rinpoche. They met in a small room next to the meditation hall. The rinpoche consoled Susan and offered assurance. “It was a very fortunate occurrence for Stephen to die where and when he did,” he said. Then, in a singular gesture of compassion that moved Susan greatly, he touched his forehead to hers.

He led her to the large concert hall being used for meditation. Colorful Tibetan scrolls hung from all the walls. Candles burned on a large altar that held Buddha figures and images of other great teachers. Sogyal Rinpoche sat on a dais in front of the altar, his prayer beads and books carefully arranged around him. Some 500 people filled the room, the ones in front sitting on cushions and those farther back sitting on chairs. Susan was directed to sit on a cushion right in front of the rinpoche.

She was given a portable disc player containing a recording of the rinpoche’s morning talk, in which he discussed the quality of Stephen’s life and how his dying among them had been such a gift to everyone in attendance, reminding them of the fragility of life and its preciousness. As she listened to it, the others were chanting phowa, a series of prayers for the safe and successful passage of Stephen’s consciousness to the next level. As Susan sat there, people behind her were passing things to her: a prayer shawl, a bottle of water, tissues—anything they thought would make her feel better. “I was sobbing, it was so beautiful,” she said.

An autopsy later revealed that Stephen had died from a “re-infarction” of his weakened heart. Susan believes that after they talked on Monday morning he went to meditation and then returned to his room to do an infusion. As was his practice, he would have dedicated the infusion to the enlightenment of all sentient beings. Then he lay down to nap, and his heart gave out.

He’d been living with the imminence of death all his life, Susan said, and when his friends began dying, he knew his own end was near. He wanted to die well, and he did.

“Stephen practiced for years for this,” she said. “He planned it. ‘As you live, so shall you die.’”