Day Without Art

'Ceremony of Remembrance' has special meaning for AIDS survivor

By CHARLES WARD
Houston Chronicle Lifestyle section, page one
Sunday, November 30, 1997

 

Two years ago, Michael Golden had accepted that he was going to die.

His T-cell count, a measure of the ravages of HIV, the virus that precipitates AIDS, had fallen to almost fatally low levels. He was enduring endless bouts of diarrhea, headaches and other maladies. An artist and teacher, he told his supervisor he wasn't sure he'd be back.

On Dec. 1, 1995, Golden electrified a somber audience gathered on Day Without Art/World AIDS Day to dedicate a book honoring Houstonians who had died of the disease. He announced he had AIDS.

"I can't tell you how hard it is to work on a memorial project that you might be included in in the next few years," Golden told the gathering at the Museum of Fine Arts, his voice pulsing with emotion, as he presented the page he had designed for the Jung Center.

"I was trying not to cry," Golden, now 38, said recently, sitting comfortably on a blanket-covered sofa in his art studio above the Lawndale Art and Performance Center.

Back then, Golden had doubted he would live to see another Day Without Art, an annual acknowledgment of the impact of AIDS on the arts.

First organized in 1988 in New York City, Day Without Art is now observed internationally. Arts organizations join to mourn the loss of artists to AIDS and show support for people living with AIDS. Houston's 1997 Day Without Art observance will begin at 10:30 a.m. Monday at the Alley Theater with a "Ceremony of Remembrance."

Golden said he hadn't intended to announce his condition so publicly. He had planned to describe how his page reflected what the world would be like without dreamers, as the Jung Center had asked. But he didn't.

"I was really angry," he said. "I was overwhelmed by the fact that I was going to die."

Today Golden is comfortably healthy. His skin is tanned. He has regained the 20 pounds he'd lost by that physical low point two years ago. He has the energy to paint and to chair the art department at Houston Community College's central campus.

The difference, at least for the moment, is his "cocktail" therapy, a combination of drugs centered on protease inhibitors. They work by disabling an enzyme the virus needs to replicate itself.

Golden takes his three drugs in three daily doses, as close to eight hours apart as possible: six pills in the morning, two in the afternoon, five in the evening. Always on an empty stomach. He also gets an experimental drug in a monthly infusion.

In many AIDS patients with access to the expensive drugs and the ability to follow a rigid schedule, the cocktail therapy has worked wonders. Their counts of T-cells called CD4, which fight many infections, are back into the range of 500-1500 per milliliter of blood, considered normal. The virus has become undetectable in the bloodstream, though scientists say it probably has not disappeared from the body.

Other patients don't benefit at all. Some respond initially and quickly lapse.

Golden is in the middle. His T-cell count has risen to 303. But his viral load, as the bloodstream measure is known, has begun to climb again. "It's not like everything went away and you got better," he said.

But he is content, cautiously optimistic - above all, grateful. "It's a whole psychic change to feel you're going to live again," he said.

That wasn't the case in June 1990, when he was tested for HIV.

He went alone to the Montrose Clinic and got the news from a caseworker. "She had about a 20-minute educational speech to give me. I don't remember a word she said. I just remember staring out the window behind her." He went home but didn't enter his apartment. He sat on the porch for hours until a friend arrived.

In late 1994, he was diagnosed with AIDS. His T-cell count had fallen to 185, below the 200 level used to define AIDS. (The presence of certain opportunistic diseases may also be used to define AIDS.) He had tried most of the available drugs, but none had worked. He couldn't stand the side effects of AZT, a drug that's effective for many people.

The next year, he endured nine months of diarrhea. Shingles and other skin problems were chronic.

He suffered debilitating fatigue. "It was hard to stand up and paint," he recalled. He moved a couch into his studio so he could rest. By the 1995 Day Without Art, his T-cell count was hovering around 50.

Then he won the lottery - a lottery used to select patients to receive the new protease-inhibitor therapy. He started it in September 1996 and entered a new stage in which he could once more look toward living, not just staving off death. He even began entering his artwork in state and national shows again. "I had truly given up on ever being well enough to approach a gallery or schedule an exhibition," he said.

Adjusting to the new reality of better health and a zest for life has become a challenge for AIDS patients responding to the new drug therapy.

"They have had to reorient themselves," said Kathy Baker, assistant director for client services of the AIDS Foundation Houston. "I don't like to speak for our clients, but (the protease inhibitor) has changed their whole outlook on life."

It has stabilized patients physically and emotionally, she said. They no longer organize their lives around trying to find help. They can consider going back to work.

Golden has mixed feelings: optimism because of advances in medicine and "a strong faith in a higher power, a faith in God," caution because he knows he has to keep taking his drugs and he worries about HIV effects that are not yet evident.

Golden's adjustment has seen an added twist. This summer, his struggle with HIV became a model for his sister.

In early July, Denver attorney Mary Pat Golden, 35, the next-oldest of his four siblings, learned she had Stage 2 breast cancer. Within two weeks, she had a mastectomy.

The day before she entered the hospital, her brother sent her overnight a long letter detailing his struggles with a chronic illness and the strategies he found effective.

"I wanted her to know that she can be a survivor and that she can live," he said.

"In a way our lives came full circle," Mary Pat Golden said from Denver. When they were children, she was shy, he outgoing, "always 10 paces ahead of me." Now, she said, he's once again 10 paces ahead.

One principle Golden emphasized to his sister was to five life one day at a time, an approach he'd learned from Alcoholics Anonymous.

Mary Pat Golden, who describes herself as a traditional Catholic, said her brother's letter also included a reliance on "God's help."

"That was a nice surprise," she said.

Michael Golden's optimism is a marked change. When he first heard about protease inhibitors almost three years ago, he was deeply skeptical, after all his disappointments with drug therapies.

"It was hard to feel hopeful about something when people are still dying around you. I don't think I got really hopeful about protease inhibitors until I saw friends who were thin as a rail get fuller faces and get more energy.

"I guess for a visual person, seeing is believing."

As Golden's life changed, so did his art.

For two years after he tested positive for HIV, he painted nothing. When he started again, he changed media and materials. He gave up printmaking because the materials were so toxic. He switched from canvas to paper because paper is easier to carry.

His first recurring image was empty bowls. For a long time he used mostly black and white, plus reds that often looked scabby. At the time, he was having blood drawn twice a week.

"People would come over and look at the images and say, 'They're beautiful, but they're so depressing.' These were my colors, colors my body made."

Later came other images identifiable with his struggles. In January 1995, he started a series of canes, inspired by students from Austin's School for the Blind. Keys became prominent, their numbers often including his T-cell count. He added more colors.

For the 1995 memorial book, he turned to the stages of the moon.

"I used the phases of the moon to suggest both the time we dream and the waxing and waning of the lives of those with AIDS," he told the MFA audience that year.

One day, while still working on the page, he deliberately tore it, "just as the moon is about to be full, in a symbolic tearing away of artists away from the rest of us and away from their unfinished work and unfinished dreams," he explained to the audience.

He was angry that everything seemed too neat and pretty. "The tear was my way of letting people know what was going on," he elaborated recently.

He repaired the page just as strikingly with heavy cellophane tape on which he'd written fragments of dreams taken from his journal, bandaging the two halves with his dreams.

His dreams for the future are becoming real and concrete. "Early this year, I decided I'm going to live. I'm going to be around," he said.

So he continues to make art, to enter shows, to practice his craft.

"It gives me a reason to wake up the next day," he said. "Having a creative outlet is really good medicine."

 

Continue to pictures that accompanied the article:

Picture of Michael with art (108 kb)
The "moon" art mentioned in the article (73 kb)
Michael with keys he uses in some of his art (157 kb)