Dori defies death

Ready to die, she says goodbye to friends only to rebound, fall in love, attempt suicide and question her faith

December 30, 2003 

When Dori Bryon was 16, she quit taking her pills.

She hid them in her room - tucked away in drawers, under her mattress and behind her bedside stand. She told no one, not her mother, not me, not her doctor.

Maybe it was teenage rebellion. Maybe she didn't grasp the consequences. Or maybe she was just weary of the brutal regimen of AIDS medications she'd been taking nearly all of her life and the relentless side effects of nausea and blinding headaches.

Her mom, Barb, eventually found the pills.

"I told her I'd support her, no matter what," she said. "It's her life."

They always made decisions together, but this one, Barb thought, was one Dori should make on her own. She was old enough.

Stopping the HIV medications in the fall of 1999 was a turning point. Most teens her age were starting to think about picking a college and moving away, about careers, boyfriends, summer jobs. She didn't have those options, but she could choose how to live and die.

Her life or death was up to God, she said.

"When God says my number is up, that's when I'm going to go and I'll be like, 'OK, take me,'" Dori said. "I don't see it as dying, I see it as being free."

I was afraid she'd get sick. In the twilight of that early fall evening, I told her I, too, supported her in whatever she decided. But I secretly hoped she'd change her mind. It was selfish; I didn't want to lose her. But I knew I had no idea what it was like to live inside her body.

Maybe it was practice for letting go. Over the next year, she started her medication again after she got cancer and then, when the treatment became too much, chose to go off again.

"It's the quality of my life, not the quantity," Dori said. "I could die within two years, and that's OK."

This child, who had fought so hard to live since her premature birth in 1983 and had battled AIDS, cancer, pneumonia, meningitis and the rejection of others, was now ready to die - on her terms.

As it turned out, her body wasn't.

She began to get better.

And out of the darkness came new hope - and the rush of love. We went to Rise n' Shine's summer camp in August 2000. The camp for children affected by HIV and AIDS was where we'd met five years before. Now she'd come to say goodbye to her friends.

At the dance held the last night of the camp, the DJ played Dori's beloved Ricky Martin just for her.

The headaches and nausea she'd lived with for so long were gone and she danced all night with Blayne Brooks, a handsome camper she had a crush on. Later, he held her hand and talked with her under the moonlight.

She was so excited she could hardly sleep that night. She wondered about the fluttering in her stomach.

"It's the butterflies of love," I told her.

On the drive home, she asked me if I thought it was possible for someone like her to ever get married and have children.

I thought, "You won't live that long." But I said, "Yes."

A few weeks later, Blayne - whose father has AIDS - came to visit and took her to lunch. For a few hours, she was simply a teenage girl on a date. Later, I teased her until she got mad. She and Blayne remained friends until her death four years later.

Her health continued to get better, surprising the doctors and everyone else.

"I just think she's got this incredible will to live," said Dr. Ann Melvin, who cared for Dori at Children's Hospital in Seattle. "If you looked at her at age 7, you would have thought she'd have two more years."

But as Dori's health improved, she got angrier. She lashed out at her mom, her friends and me. She was angry at AIDS, angry at God. Anything set her off, even a slow waiter in a restaurant.

We weren't sure if it was typical teen behavior or something else. I knew how to comfort her when she was sad and afraid but didn't know what to do with her tirades.

In the summer of 2001, she began telling everyone she was a vampire. It especially surprised the nurses who gave her blood transfusions to boost her energy. Maybe it was because that was how she saw her own infected blood, a deadly fluid with control over her destiny.

After fighting so hard to survive and having to give up so much, she decided she didn't want to live any more. One day she tried cutting her wrists with a kitchen knife. It barely broke the surface, but the attempt was serious.

She was admitted to Children's Hospital - this time to the psychiatric unit. I visited her in the locked ward and found her in a common room, sitting near a girl who communicated through chirping noises and humming.

Dori was diagnosed with depression, started medication and went home after a few days. With a therapist's help, her anger dwindled.

As she prepared to die, Dori let go of many things she loved. Now she had to start over.

She quit Seattle's Garfield High School when she was diagnosed with cancer, but now she wanted to learn. She worked with a tutor on her GED and tried teaching herself Japanese and learning about different faiths. She'd been raised Christian but now wanted to learn about Wicca, Buddhism and other religions.

I found myself in the middle sometimes. Dori used the monthly allowance I gave her to buy books on witchcraft, which upset her mom. Barb agreed to let her have some of them in the apartment, but only after she prayed over them.

"Oh, Mom," Dori would say, rolling her eyes. But then she nestled beside Barb on the couch and prayed with her.

Amazingly, the cancer that almost killed her vanished.

"That will continue to amaze me for the rest of my life," said Dr. Eneida Nemecek, now an attending hematology/oncology research associate at Fred Hutchison Cancer Research Center in Seattle.

As Dori approached 18, she wanted to become independent. She started going alone to doctors' appointments, getting there by foot or taxi.

Like others her age, she wanted to move out of her mom's house. She wasn't healthy enough to be on her own, so she had another plan.

"Lind, can I move in with you?" she asked.

I paused, trying to figure out how to tell her no without hurting her feelings.

My house is full of stairs, I explained. It would be hard on her joints, often sore because of AIDS. Plus, my husband I were at work all day; she'd be bored. She had counterpoints to everything. Finally, I said Mike and I needed time alone.

The other truth was that she required more care than I could give. I wasn't up to it.

Still, she kept bringing it up. Each time I told her no but promised she could come over and spend the night as she often did. She still tried to move in in subtle ways, one day bringing over a bag of food for me to keep on hand in case she visited and I didn't have her favorite vegetable soup. Another time it was a bag of books and puzzles she liked and a stuffed bear.

She decided to keep living with her mom but found new freedom when a group of students from Seattle University began volunteering to befriend her through Multifaith Works. They took her to salsa dances on campus, out to Starbucks and over to their houses for dinner. At last, she had a circle of friends her own age.

I stopped worrying that the phone would ring in the middle of the night, or that she'd get sick if I was out of town.

For the first time in years, I relaxed. That time was an oasis of calm - time to renew my energy for what was ahead. It wouldn't last.

Linda Dahlstrom: 253-597-8438
Linda.Dahlstrom@mail.tribnet.com



SIDEBAR: RISE N' SHINE HELPS KIDS DEAL WITH HIV, AIDS


Rise n' Shine serves children and teens affected by HIV and AIDS.

The nonprofit group, which is based in Seattle but works with young people from around Western Washington, pairs children with adult volunteers in the mentor program, and offers support groups, summer camps and more. Most of the children who go through the program have a family member living with AIDS, or have had one who died from it. A few of them live with AIDS themselves.

"The children all have the same need: to be safe, accepted and loved," said Janet Trinkaus, who founded the organization in 1988.

Doriann Bryon started going to Rise n' Shine's groups in 1991, when she was 8. At school, some children who knew she had AIDS were afraid of her. At Rise n' Shine, they weren't.

"Rise n' Shine gives the kids a place to connect from the soul," Trinkaus said.

For information on Rise n' Shine, call 206-628-8949.



SIDEBAR: AIDS AT HOME AND GLOBALLY

In Pierce County

• An estimated 900 to 1,400 people in Pierce County are infected with HIV.

• 963 people in the county have been diagnosed with AIDS as of September 2003.

• More than 500 people served by the Pierce County AIDS Foundation since it was established in 1987 have died of AIDS-related causes.

In Washington

• 10,755 people have been diagnosed with AIDS in Washington state as of October 2003 since the start of the epidemic in 1981. Of these, 5,882 persons have died.

• Up to 12,000 Washingtonians are believed to be HIV-infected.

Around the country

• Between 850,000 and 950,000 people are living with HIV and AIDS today in the United States.

• Each year, an estimated 40,000 people are infected with HIV.

• Today, half of all new HIV infections in the United States are in people under the age of 25.

• In 2002, 16,371 people died of AIDS in the United States.

Around the world

• In 2002, an estimated 42 million people around the world are living with HIV and AIDS, the equivalent of the combined populations of California and Washington state.

• AIDS has killed more than 20 million people globally since 1981.

• More than 13 million children have been orphaned because of AIDS since 1981. By 2010, there might be more than 30 million AIDS orphans.

• About 5 million people around the world became infected with HIV in 2002 and 3.1 million died.

• In sub-Saharan Africa, 29.4 million people were living with HIV or AIDS in 2002, accounting for more than half of those around the world infected.


SOURCES: Centers for Disease Control & Prevention, Pierce County AIDS Foundation, Washington State Department of Heath, U.N. AIDS Organization, the U.S. Census Bureau



Dori & me: 'Together forever, no matter what'

For eight years, News Tribune assistant features editor Linda Dahlstrom was friends with Dori Bryon, who was born HIV-positive in 1983 and died this fall at 20.

With her blessing, Linda began chronicling Dori's life to, in her words, "tell people what it's really like to live with AIDS." Dori also invited News Tribune photographer Janet Jensen into her life.

Sunday: Dori and Linda's loving, but also trying, relationship.

Monday: After years of being shunned by peers, Dori finds acceptance in an unlikely place.

Today: Dori's alternating struggle to defy death and to give in to the inevitability of it.

Wednesday: Dying with grace, and how Dori taught Linda to deal with loss.

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