Aids Quilt

Individually, the panels are made of blankets, burlap, felt and velvet. Some are fancy and colorful, others plain and somber. Combined, the panels form the AIDS Memorial Quilt. The national quilt, sections of which are on display around the country, now is made up of more than 11,000 3-by-6-foot panels made by family, friends, lovers and even strangers. An 11,000-square-foot portion stitched from 640 panels will line the walls of two UCI student activity buildings Friday through Sunday, the first major viewing in Orange County. As of May, more than 83,000 people nationwide have died of AIDS, 17,400 of them in California, 921 in Orange County. Here are the stories behind three of the panels:

Craig Johnson

NEWPORT BEACH

Craig Johnson designed his own panel for the AIDS quilt on a piece of paper while lying in his bed at Hoag Hospital in Newport Beach.

He wanted it simple: a black background on which “Craig” was spelled out in colorful, large flowers.

He then asked his mother, Jean, to make it for him.

“I watched him draw his own design, and I felt such pain because he knew the panel wasn’t going to be made until he died,” she said. “It was very important for him to be remembered. He didn’t want to be forgotten. The panel was a way for him to hang on.”

Craig was 30 when he died a month later. At 6 feet, 2 inches tall, his once-sturdy, 165-pound frame had shriveled to 100 pounds. He was covered from his scalp to his toes with Kaposi’s sarcoma, a form of skin cancer that dotted his body with purplish lesions. The lesions didn’t stop on the outside. They covered his lungs, his eyes and blocked his intestines, causing him to vomit when he tried to eat. He also fought herpes and tuberculosis, against which his weakened immune system was virtually helpless.

“It was like his body was eating itself up,” his mother said.

Death might have seemed like a relief, but not for her son, she added.

“Craig never wanted to die,” Jean said. “He didn’t give up his life without a fight. He tried so hard.”

Craig was an urban planner for the Los Angeles County Transportation Commission, where he helped design the county’s light-rail system. He worked mainly on the El Segundo line. A handsome man with a boyish grin, he liked hiking and camping at Yosemite. He loved the outdoors, and he drove hundreds of miles from his home in Los Angeles to watch the spring flowers bloom in the deserts. He tried sailing and even sky-diving.

At first, Craig kept his illness a secret from his mother. He didn’t want her to worry.

Jean Johnson, who is 54 and a retired Gemco department store clerk, admits that she is still coming to terms with her son’s death. During his two-month stay at Hoag, she slept on a couch in his room.

In a recent interview at her new home, Jean said she had learned accidentally that her son had contracted AIDS. She had accompanied him on a July, 1987, sky-diving trip to Lake Perris in Riverside County. After his jump, she helped her son out of his chute and saw six purple lesions on his arms and back. Her heart quickened.

“I thought the world had stopped,” she said, pausing to look at a photo of Craig on her coffee table.

“I heard about AIDS, but everything seem so vague. You never thought it could happen in your family,” she said.

When Jean confronted her son, he held her while she cried.

Craig continued working on the rail line until March, 1988, when he became too weak. Finally, unable to care for himself, he moved back to his mother’s home in Costa Mesa before transferring to Hoag.

He read the latest research on AIDS and any advances in fighting the disease. He didn’t want his muscles to deteriorate, so he tried to take daily walks in the hospital hallway. When he felt a little stronger, he lifted three-pound weights.

But with all his hoping, he was also realistic. One day, he planned his own funeral.

There were to be some flowers, a little food and some words spoken. He asked that “The Rose” be sung. He wanted everyone to come casual. There was to be no fuss or pageantry. He just wanted a ceremony at Aliso Beach, where he used to sit by the water and watch the sun set. He asked to be cremated and his ashes scattered in the ocean.

“He was matter of fact about it,” his mother said. “He didn’t want me to be burdened.”

He died at 3 a.m. Oct. 23, 1988. Jean watched him let go.

“He sort of folded in like a flower,” she said. “He collapsed into himself and he was gone, totally gone.”

The family held his funeral and scattered his ashes, but it took his mother several months before she could make his panel.

She started working on it shortly before the first anniversary of his death. She wanted it to be part of the October, 1989, AIDS Memorial Quilt display in Washington at the capital’s mall.

She bought black velvet for the background and picked out brightly colored fabric for the letters. She cut the fabric and fashioned poppies as big as her hand. Then she sewed each flower to form the letters of her son’s name.

She worked on it for nearly two months, spreading out the panel across her living room floor and attaching each letter. When she finished it one afternoon, she quickly wrapped it up and mailed it to Washington in time for the display.

The next time she saw her son’s panel, it was stitched to hundreds of others. The Washington Monument loomed in the background.

“All the panels were there, and they all seemed to reach up to heaven,” she said. “I felt as if Craig was finally free.”

Steven Shaw

GARDEN GROVE

Steven Shaw loved Doris Day.

While other teen-agers bought the Beach Boys and the Beatles, he collected Doris Day albums, wrote her fan letters and hung her posters in his room. One of his favorite movies was “The Man Who Knew Too Much,” where Day sang “Que Sera Sera” while searching for her kidnaped son in Europe.

When he left home in 1975 to become a disc jockey in Houston, he took his Doris Day album collection along. Twelve years later, he hired a truck to bring the records back with him when he returned, sick with AIDS, to his parents’ home.

“I think he had a crush on Doris Day,” said Joan Shaw, his mother. “He loved her so much. Sometimes I think he lived a little longer cause he had someone he idolized so much.”

The AIDS virus was first diagnosed in Steven in 1982. He had been working in Houston, where he was known on the dance circuit as the “disc jockey from Los Angeles.” At the time, few knew about AIDS. Steven kept getting colds and would call his mother often to talk about the various ailments.

After the diagnosis, he returned to Orange County, where he was put in an experimental drug program at USC. But nothing seemed to help and, within months, he dropped from 175 pounds to 145. He was never warm enough, even with a heater going 24 hours a day. His mother would bring him large sweaters and heavy shirts that would sag on his shoulders.

“One pill made him yellow, another pill made him brown, And still another pill made him throw up,” she said.

Joan Shaw, a home child-care operator, has left her oldest son’s room pretty much the same since he died at age 37 on March 8, 1989.

The Shaw family doesn’t want to give away all of his things, not just yet. A shelf full of videotapes reaching from the ceiling to the floor fills two corners of the room. There’s a poster of Doris Day’s “April in Paris” and “My Dream Is Yours” on one wall. His green robe still hangs in the closet and a pair of his brown baby cowboy boots, unbronzed, sits near a lamp.

Dotted throughout the room are photos of Steven. He was an accomplished teen-age tap and jazz dancer and had his own group, “Steve and His Girls.” He had taken lessons at the Jean Lockin Dance Studio in Anaheim for 10 years.

At the foot of his bed are his color television and VCR. At night, he and his mother would watch Doris Day movies and share snacks. They hummed along with the tunes and recited almost every line in the scripts.

Sometimes, she fell asleep before her son. He would wake her up with a tap on her arm and whisper, “Isn’t it time for you to go to bed?”

During the day, he watched cooking shows and wrote down dozens of recipes for his mother. Most of the time, he recorded hundreds of music tapes for his friends from the 20,000 records in his collection.

Even when Steven was not feeling well, he dragged himself out of the house to peruse albums at his favorite shops, said his youngest sister, Melanie, 22, who drove him to the stores.

“He would go up and down the aisles and buy stacks,” Melanie said. “Sometimes, he seemed so fragile, like he couldn’t lift the records.”

Joan and her husband, John, a manufacturing supervisor, took their son to UCI Medical Center when he couldn’t move the right side of his body. Twenty-four hours later, Steven was dead. His heart collapsed from blood poisoning, and he had no white cells left to fight disease.

“You go day by day expecting him to die,” his sister Melanie said. “But when he died, I couldn’t accept it. I wanted more time. I wanted more time to be with him . . . to talk to him.”

A week after his death, Joan Shaw took the entire family to the Queen Mary in Long Beach, where a section of the quilt was being displayed. She wanted to see what kind of panel to make for her son.

“I knew I had to make a panel for him,” she said. “I cried and cried when I was making it. But I felt a need to do it.”

It took her two weeks to make the panel. She picked her son’s favorite color for the background, kelly green. On top, she printed his name in black, three-inch letters. Melanie designed a silver, glittering dance ball to dangle in the middle of his name.

Joan Shaw pasted an 8-by-10 photo of Steven holding his cat, Pumpkin, on the right side of the quilt. On the left, she attached a mini-poster of Doris Day and Gene Nelson dancing in “Lullaby of Broadway.” Then she covered the empty spaces with black felt records, each one with a different Doris Day song title.

And on the bottom, Joan laid out a satin keyboard that stretched from one end of the panel to the other. On the keyboard are the words, “Que, Sera Sera, whatever will be, will be.”

Richard Avila

SANTA ANA

Richard Avila could never tell his parents that he had AIDS, even when he was bedridden at their home for three months with the deadly respiratory infection that led to his death.

Neighbors and friends in the 2nd Street neighborhood where Richard grew up thought he had double pneumonia. They knew little more.

“In the Mexican culture, there are no good names for gays,” said Virginia Avila, Richard’s mother. “Maybe because of that, I was never open about my son being gay and having AIDS.”

The Avila family knew that Richard was dying of AIDS. “Everyone thought about it constantly,” said Ernestine Avila, Richard’s sister-in law. “But nobody would say it in the open. Nobody could.”

Richard, the second oldest of seven children, would have been 39 on Aug. 17. A gregarious man with a penchant for bad jokes and old cars, he was always happy-go-lucky. As a teen-ager, he cruised along Bristol Street in his black, souped-up Malibu. He was a member of Santa Ana’s Street Masters, an auto club. He could talk all night and laugh all day, his mother said.

Then he became sick.

His family suspected in 1987 that something was wrong when he abruptly quit his job as a furniture store delivery dispatcher to take a bicycle trip in Hawaii. He told friends he wanted a tan that would last forever.

Several months later, Richard came back and returned to his job. Then he contracted a cough that he couldn’t shake.

“Suddenly, he was so tired all the time, he had no strength left,” Virginia said.

When Richard could barely breath, his family took him to Anaheim Kaiser Hospital. There, his brother, Phillip, persuaded Richard to be tested for AIDS. Then, for the first time in his life, Phillip saw his big brother cry.

“To watch him cry was the hardest thing I’ve ever seen,” Phillip said. “It was the first time we talked about the possibility that he had AIDS, and we broke down crying.”

Several days later, AIDS was diagnosed and Richard told Phillip.

“One of the first things he said was, ‘What do I tell Mom?’ I told him he should tell her the truth,” Phillip said.

What made Richard’s fight against AIDS more difficult was that he never disclosed his sexual orientation to his family, says Phillip, 30, who is also gay and had known about his older brother’s sexual orientation for 10 years.

“Not only was Richard dealing with the disease, he was also coming to terms with the fact that everyone was finding out he was gay,” Phillip said. “Since he wasn’t openly gay at home, it made his fight harder.”

Richard couldn’t tell the rest of his family.

“He didn’t want to hurt anyone,” said Tina, 27, Richard’s younger sister. “He didn’t want anybody to be ashamed of him. He couldn’t accept AIDS for himself, and I guess he couldn’t see us accepting it either.”

And even though Richard was closest to his brother, Fred, and Fred’s wife, Ernestine, he didn’t tell them about his illness either.

Richard and Fred, who is a year younger, were inseparable as kids. When Fred and Ernestine married in 1972, Richard was best man. When Richard was bedridden, he sometimes called them to talk. It was during those conversations that Ernestine thought he wanted to tell them he was gay and that he had AIDS.

“He talked about little things, a little chit-chat,” she said. Then he was all quiet, like he had something important to say. But he never said anything.”

As Richard’s health continued to fail, Virginia and her husband, Arthur, reached out to a support group for AIDS survivors, which helped them make funeral arrangements when Richard was dying.

“I knew he was going to die even though I did not want to believe it,” Virginia said. “I kept thinking something would save him, but I had to be realistic too.”

They chose a gray casket and a plot at Fairhaven Memorial Park, where the sun seemed to shine constantly.

“All these crazy thoughts kept running through my mind,” Virginia said. “I was thinking what colors would Richard like. . . . Would he be comfortable in this casket or not? But all I really wanted to do was to scream and cry and yell. But I didn’t, I couldn’t.”

Richard died Aug. 17, 1988 at age 37. Fluid from pneumocystis carinii pneumonia, a leading cause of death among people with AIDS, flooded his lungs and he suffocated.

Nowadays, Virginia talks to Latino community groups about AIDS education and the importance of discussing the disease.

And, after two years, she has finally made a quilt for Richard.

“It was like the final chapter in Richard’s life, and I didn’t want that,” Virginia said.

With help from a family friend, Richard’s panel was finished in June. On Richard’s panel, there are palm trees on the bottom for all his trips to Hawaii.

On the left of the panel, there is a Street Masters insignia for his love of cars and fun. And on the right, Virginia has written, “Forever in Our Hearts,” the theme of the Orange County quilt display.

The panel is signed “Love, Mom and Dad.”