Hanford man and family live with impact of HIV

John Lemos' weathered face lights up for a moment as he speaks of his grandchildren and then suddenly darkens the next moment. He's dead silent.

The reality hits Lemos like a ton of bricks.

"One part of me is thankful that I'm alive and got to know my grandkids, but another part of me is thinking I'm better off dead," says a teary-eyed Lemos, 61, who was diagnosed with full-blown AIDS in 1987.

The Hanford man has survived all these years despite HIV's ravages to his body.

He was supposed to be dead 20 years ago. Yet medical advances in treatment have kept him alive.

A tall man with a soft spoken voice and a ready smile, Lemos is both glad and tired to be alive. His face is gaunt and wrinkled, and his elbows bony. His lethargic appearance belies the anguish he has lived through, having suffered the disease for 20 years and having lost his male partner to the same disease along the way.

"It's kind of like a bad joke," Lemos said. "They tell you to spend all your money because you won't live to see tomorrow. But you're still here tomorrow."

Still, Lemos calls himself "luckier" than many AIDS patients.

Indeed, he receives unwavering emotional support from his two accepting and understanding daughters and six grandchildren. He still has a house, where he can live with his beloved dogs.

Diagnosed with HIV/AIDS decades ago, Lemos is learning to live with a new kind of uncertainty -- living longer and suffering the effects of massive amounts of drugs and an aging body all at once while facing mounting medical debt.

A terminal illness has been a moribund fact of life for Lemos and his family for so long. But living long with AIDS has its emotional price, in the opinion of Lemos.

Any day could be his last. It's much harder now to die, he says, especially after having watched his grandchildren grow.

So Lemos draws up a deliberate chasm with his grandchildren -- an act which he admits is an instinctive self-preservation mechanism.

"I love my grandchildren, but I don't want to get too close to them," Lemos says, choking back tears.

"I'm trying to taper off from seeing them too much because I don't want them to go through the hurt. And I don't want to be close and then have to lose them."

A similar uneasiness is expressed by Lemos' daughter, Maggie Jenkins, an employee of a local air conditioning contractor who is also outspoken about her father's illness which is often stigmatized by society.

"I know my dad loves me, and he knows I love him. But I try to build this protection so I don't get hurt," Jenkins said. "In reality it doesn't work, but I want to pretend it's going to work."

Meanwhile, Lemos and his family endure the hard swings of an emotional pendulum between appreciation for life and forlorn sadness over an immutable fact of his dying from AIDS.

Diagnosis

In the mid-1980s, Lemos was a successful businessman managing three different funeral homes in Salinas.

He had just gotten a divorce from his wife at the time and moved in with his gay partner. Lemos suspects irresponsible sexual intercourse led to the infection. His partner turned out to be HIV-positive.

By 1987 he was becoming progressively sick with various illnesses, such as throat cancer and Kaposi's sarcoma, a type of skin cancer common in HIV-positive men.

That's when he was diagnosed with AIDS, acquired immunodeficiency syndrome, resulting from the damage to the immune system caused by human immunodeficiency virus (HIV).

Lemos had kept his illness from both of his daughters, Maggie and her older sister Sarah, both teenagers at that time, until one day in 1989, when he took them to the doctor's office.

"We knew he was sick, but he couldn't get himself to tell us," Jenkins recalls. "It was the doctor who explained to us that he had AIDS."

His prognosis at that time: Six months.

"It was hard," she said. "All I could think of as a 16-year-old was he was going to die ... But he didn't. The reason he didn't, I think, is the thought that he's got to be here to take care of us. That's why he fought so hard."

But because of AIDS, Lemos had lost his job. His quality of life subsequently went downhill.

He overcame cancers and stayed alive, thanks to effective drug treatment. But he's experienced a gamut of side effects. He lost his pancreas and developed diabetes. He's had kidney failure and gone through expensive dialysis.

When he was first diagnosed with HIV/AIDS in Monterey, Lemos was part of a support group.

Lemos is the last patient standing out of the support group. Others are all dead now, he says.

"I stopped counting at 106. That was when my partner died five years ago," Lemos said.

Price of disease

There are more than 100 people living with HIV/AIDS in Kings County today. Lemos is one of them.

In the midst of the illness, some give up their drug habits or live more responsibly and remain positive about life. They refuse to live life with a gun to their head.

Many others stay quiet. Very few would talk about their disease, even on condition of anonymity, for fear of losing jobs or fearing discrimination.

Finally, there are a handful of patients, like Lemos, who are willing to offer their stories hoping to enlighten the public about HIV/AIDS.

They are tired yet still hanging on to life. They still have a streak of activism in them.

Lemos in his spare time has helped collect food for fellow HIV/AIDS patients in the community who are destitute.

AIDS patients often lose money for drugs and expensive medical treatments. Lemos knows that pain first-hand.

Lemos has gone broke over the years.

Like many AIDS patients, Lemos spends nearly $8,000 to $10,000 a year in medical cost to keep up with rigorous drug routines and doctors' visits.

In the past he was forced to "spend down" his inherited assets so he could qualify for the state's AIDS medication help program.

Until recently, he had $37 to live on each month, and the rest of his pension and Social Security went to paying his medical bills, utilities and mortgage, Lemos said.

Last month, he pulled a second mortgage on his north Hanford house, so he now has at least $200 a month to live on for food and other necessities each month.

That was his conscious choice to keep the quality of life, even if it meant giving up equity on his property.

"I'm keeping it for my sanity," Lemos said.

He's fortunate compared with his longtime friend and neighbor, Mardi Wheeler, who is also HIV-positive, along with her husband Ken. The couple recently lost their home in foreclosure.

With no Medicare, no Social Security and no Medi-Cal, they faced thousands of dollars in medical bills.

The Wheelers now live with their daughter in the neighborhood.

"You're not just living with the disease, but you're living with the reality of life, too," Wheeler said.

Advocacy

Maggie Jenkins has unconditional love for her gay father, who is suffering from AIDS.

It also comes from her understanding of the disease that it could affect anyone. More than a third of the country's HIV/AIDS cases are through heterosexual transmission.

"I accept people more because of my dad," she said. "You don't ever judge somebody because of what disease they have because you never know the whole story. You have no idea how much you're hurting the person by judging him just because he's done something you don't believe in."

She honors her father by calling his deceased partner "stepdad."

"Turning my back on my dad has never been an option," she said. "I don't care about his lifestyle or disease. He is my dad."

Over the years, Jenkins has encountered many people who would cringe at her disclosure that her father suffers from AIDS or make cutting remarks about AIDS patients in front of her, not knowing her father's condition.

She's also met those who kept their disease to themselves for fear of being disowned by their families and even those who deny that their family members died of AIDS.

"I really think the reason why some people survive longer is the family support that they get," Jenkins said. "We do have family members who act weird ... Even today after AIDS has been around for so long and there's been so much AIDS education, still there are people who think they can get AIDS from casual contact."

Jenkins is an advocate of abstinence education as well as promotion of condom use among youth.

Lemos and Mardi Wheeler, who have spoken in high school and college classrooms, also say they use their experiences as a cautionary tale as they advocate for condom use.

"I thought it was a gay disease. I thought I was safe. That's how naive I was," said Wheeler, who contracted HIV through heterosexual contact.

Wheeler advocates checking for sexually transmitted diseases before starting a relationship.

"You aren't just talking about teen pregnancy. You're talking about possibly killing somebody," she said. "A 25-cent condom can possibly save your life. Kids aren't hearing this in school."

John Lemos speaks proudly of his daughter Maggie for her decision to go public with her story. Jenkins says her father remains an undiminished force of influence.

"My dad's a perfectionist," Jenkins said when asked to describe her father.

The man still has a good sense of humor, and there's "a lot he laughs at," according to her.

Though she calls him an "amazing person," she says it's difficult to elaborate because doing so only reminds her of his imminent death.

"It's easier to think of negative things because the positive things will be gone when he's gone. Knowing my dad's dying for sure is a horrible feeling ... But I feel very fortunate that he's lived so long."

The reporter can be reached at 582-0471, ext. 3059.

(Dec. 1, 2007)