San Francisco Chronicle (SF); Monday, November 18, 1991
Sylvia Rubin, Chronicle Staff Writer

TEXT:

One million plus Americans have tested HIV-positive. But until Magic Johnson, a dazzling smile wasn't part of the picture.

Johnson said he is going to beat this thing. He said life will go on, and like so many others with HIV, he said he feels great, "really good," despite the flu-like symptoms he'd experienced a few weeks before his dramatic announcement.

Now what?

Now the reality sinks in. What Johnson didn't say at his news conference, but told Sports Illustrated, is that while he will continue to be upbeat, he understands he is likely to become ill someday, though that prospect may still be a decade away. In today's edition of the magazine, Johnson said, "We weren't fooling ourselves. We knew that I would probably contract AIDS within 10 years. But we knew that, with the right medical treatment and a proper diet, I could lead a normal life -- until my immune system just couldn't protect me from illness anymore."

Living with HIV can mean feeling healthy for as long as 15 years without symptoms. It means getting informed, finding support, staying upbeat and taking control.

"There is a big difference between having a terminal illness and having a life-threatening illness," says Alice Ordover, coordinator of emotional support programs at Aris Project in Campbell, which helps people with HIV and AIDS. "I don't tell people with HIV that everything is going to be just fine. I like to let people know they can take some control over this; not all, but some."

At some point after the diagnosis -- it could be a year or more -- the mind begins to grasp the unthinkable, says film maker Peter Adair, who is HIV-positive himself and spent a year filming people with HIV and AIDS for the documentary, "Absolutely Positive," which aired on KQED last spring. "I was surprised at their upbeat attitude," Adair said. "All of them had a handle on it. Usually that's true with people with a fatal disease, it's almost like the mental analog to adrenaline. You need to be upbeat for survival."

There are as many ways to make peace with HIV as there are hotlines to call. A former drug and alcohol abuser who turned his life around after contracting HIV said having the virus gave him the dignity he never thought he had. A divorced father embarked on an obsessive vitamin and exercise regimen, refusing to reach out for help, but has come to regret his decision. A 60-year-old wife and mother, who contracted the virus from a contaminated blood transfusion, credits a support group and her husband with keeping her spirits up. And a 34-year-old office worker who has been infected since 1983 says his life has changed very little.

TRYING TO BEAT IT

Mike Boockholdt chooses his words carefully when he talks about having HIV.

"I could beat it. I'm not saying I will beat it, but I believe there is a possibility," said the 34-year-old benefits specialist at a Palo Alto computer company who has been infected for eight years. He takes no drugs, except for occasional antibiotics during lymph node flareups.

"I am living with HIV. I use that phrase deliberately, and I believe in it. Having HIV has not radically changed my life."

When he told his manager, Jane Evers, about his condition, she reassured him, without the need to spell it out, that nothing would change on the job. And very little has changed at home.

There is no bowl of vitamins on Boockholdt's breakfast table, no weight-lifting equipment in the bedroom, no cupboards full of foul-smelling powders, herbs or mixes.

"I take a multivitamin a day, avoid sweets, get enough sleep and take the stairs instead of the elevator," he says. "That's about it."

He took his usual two-week vacation this year and went to Europe, where he has been before, "but I did cram a lot into those two weeks, because of my concern that I might not get back."

While he doesn't live each day as his last, "I do have a daily awareness that life is short."

Boockholdt's lover is HIV-negative. "I've been trying to find the right relationship where my HIV status is not the primary issue," he said. "I've never felt rejected by him in the year we've been together. Basically, HIV became another part of my life. It didn't become my life."

A REASON TO LIVE

But HIV did become Bart Casimir's reason for living.

Casimir was a drug addict and an alcoholic, and continued to abuse both substances for a year and a half after he tested positive. After hearing the news in 1983, he ignored it.

"I had no symptoms whatsoever, and I kept on drinking and using drugs," he said. "It wasn't that I was in denial about having the disease. I was trying to deal with the question of dying."

Finally, he enrolled in a drug treatment program and joined Alcoholics Anonymous. When he got out, he moved to Mendocino to be closer to his AA sponsors, who helped him turn his life around.

"There was one thing I was searching for all my life, and I finally found it -- my dignity," he said.

Casimir now leads a support group for black men who are HIV positive, where not everyone is as upbeat as he is.

"The last few meetings, ever since Magic Johnson, have been really powerful," he said. "People were really angry at the fact that the world is suddenly taking notice of people with HIV, but I think it's just misdirected anger and is really a reaction to their own fears."

Casimir, who hadn't had a serious relationship in five years, is now living with a man who is also HIV-positive, and sex is still a part of their lives. "Of course we have sex. There is just no exchange of bodily fluids, simple as that."

Support, whenever you ask for it, is of the utmost importance, say those who are living with HIV.

For about six years, Michael, a 38-year-old divorced father and former drug user with HIV, went it alone. He got clean and sober, took megadoses of vitamins, began bodybuilding and got incredibly healthy. He was as upbeat as a smile button and a walking contradiction, since he refused to have anything to do with anyone or any group that had anything to do with HIV. Support groups? "No way." Hotlines? "I can do this alone." Doctors? "I hadn't been to a doctor in at least four years."

A NEED TO REACH OUT

Now, six years after his diagnosis, and not as well as he used to be, Michael regrets his decision.

"I realize you have to reach your hand out and say, 'I need help.' I was a heterosexual male; I felt like a fish out of water. There still aren't a lot of places for me to go. But I hope that because of Magic Johnson there will be more support available for heterosexuals." And he's trying to relocate his upbeat attitude. "I have to. I think I'll be dead a lot sooner without it."

Amy Eggers, a former school administrator, got the test results in 1986, a year after receiving contaminated blood during open-heart surgery.

"All I'd ever heard was that this was a gay man's disease, so it was a very frightening experience, being a woman. I didn't ask for support for about a year, and when I did, I frantically looked for services in vain."

In 1988, she finally found a group for women with AIDS at the Center for Attitudinal Healing in Tiburon.

"There is a tremendous around of camaraderie, support and sharing of information about medications. There are so few women, and we often respond differently to medicine and treatments than men do."

Eggers, who is now 60, and retired, praises her spouse, Art, a retired Navy officer, who "is a very upbeat husband who shares my philosophy of living one day at a time and doing the things that make you happy, like going to Kauai, being with my kids, seeing the sunshine, going to the beach, reading a good book."

Still, she said, it "took a good couple of years not to be afraid of death."

Spending time with other women with HIV, being on the board of directors at the Shanti Project and lecturing at schools about AIDS have helped her remain optimistic. Although her immune system is becoming dangerously weak, she can still laugh at the latest development of her illness, an embarrassing case of acne.

"This, too, shall pass," she says.

CAPTION: PHOTO (2)

(1) 'I'm not saying I will beat it, but I believe there is a possibility,' says Mike Boockholdt/BY FREDERIC LARSON/THE CHRONICLE (2) HIV became Bart Casimir's reason for living: 'There was one thing I was searching for all my life, and I finally found it -- my dignity.'/BY LIZ HAFALIA/THE CHRONICLE

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