Decades of disease: Living with HIV and AIDS takes toll on North County residents
By: TERI FIGUEROA - Staff Writer | ∞
Doreen Lee, who was diagnosed with HIV in 1990, with her son Erik Lee, 12, in their apartment in Vista on Wednesday. Erik does not have the virus, but is developmentally disabled. 'When I get sick, he's my motivation,' Doreen Lee said.
HAYNE PALMOUR IV Staff Photographer
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HIV is an uncaring thief. It is also an insidious killer, slipping into an unsuspecting victim before traces of it show up. It steals lives from its victims. But first, it steals from their lives.
Unheard of just a few decades ago, HIV affects some 40 million people around the globe, according to the World Health Organization.
In San Diego County, doctors have diagnosed more than 12,000 people with AIDS since the beginning of the epidemic, through the end of 2005. Two and a half decades after HIV and AIDS became part of the nation's vocabulary, more and more of those patients are living longer with the disease.
HIV is the precursor to AIDS, which attacks the immune system and gradually kills the cells that play the key role in fighting off infection and certain cancers.
The first official references to the term AIDS, or Acquired Immune Deficiency Syndrome, date to the early 1980s. This year is the 25th anniversary of the first reported case of the disease.
Friday is World AIDS Day, started in London in 1988 to generate greater public awareness about the disease.
Changes in privacy laws and methods of counting prevent the county from saying exactly how many people have been diagnosed with HIV in that time, although one 2006 report states that nearly 5,000 people in the county have been diagnosed with HIV in the last 3 1/2 years.
Diagnosed with HIV in 1990, Ted Yankey refuses to let the virus pirate much more from him than his health. He tries not to concentrate on his diagnosis.
"I work," he said when asked how he copes with what has now become AIDS. "I live my life. That's how. I do think about it on occasion, but I get up, go to work and maybe go out and have a beer."
For all that HIV has stolen from its victims, it leads some of them to find something else.
"It has made me stronger emotionally, for sure," said an Encinitas man who did not want his name revealed. "If somebody would have told me I'd be around this long, I never would have believed it. And getting through every episode (of illness) made me stronger.
"Learning to live with it on an emotional level is just as important as living with it on a physical level," he said.
They figure out their own way to cope, because, as Yankey said, "There's no manual for living with HIV, no 'HIV for Dummies' book to read.
"There is life after HIV," Yankey said. "You can live. You can be productive. You can have a relationship. You are not a walking dead man."
'I want to live'
Yankey remembers the day he rolled over in bed to answer an urgent phone call from his doctor, the day he learned the thief had struck: Nov. 16, 1990.
"It's just a date you remember," he said over a cup of coffee at a downtown Oceanside cafe. "It was devastating news."
His first thoughts were simple: "I'm dead. I'm a dead man."
"That's what I thought I was. I'm not going to live. I am going to die," he said, taking a drag from a cigarette.
This year, Nov. 16 came and went ---- and Yankey didn't notice, even though it marked the 16th anniversary of learning he was HIV-positive.
No pity parties for him. His disease is just, well, there. It is just an "is" in his life.
"It's not like I can take it off like socks," Yankey said, then rubbed his arm to see whether skin flakes fell. "It's in me. It's in the skin cells I shed."
Sometimes the virus slaps him in the face. Swipes his peace right out from under him. Like a few months ago, when he saw an obituary for a friend, an HIV-positive man who had once come to Yankey for guidance.
He used to include his HIV status on his Internet profile, but removed it because he got "so many hate e-mails. And that was coming from people within the gay community," he said.
Yankey's condition was no secret when he owned a gay bar not far from the beach in Oceanside. Before he sold Ted's Capri Lounge in 2004, Yankey used it as a place to promote safe sex, and kept a dish of condoms on the bar. Fundraisers there generated more than $10,000 for the cause over the years, he said.
A once-married ex-Marine with twinkling eyes and a mischievous grin, Yankey doesn't wear his HIV status on a T-shirt anymore. But he shares it with potential partners. He's not surprised that nearly all of them leave in a cloud of dust.
"I don't like that," he said. "It hurts your feelings. But I do understand it."
Yankey used to sit on the board of Fraternity House, a home for AIDS patients in Escondido. On Thanksgivings, he used to bring a turkey to the home. And every Christmas, he sent each resident a card.
At first, Yankey refused most medications. Since then, he's been on and off anti-HIV pills, and has been off them for about three years.
"I live my life, and if my number is up, there's nothing I can do about it. I don't have any regrets," he said.
Earlier this week, the dark blond, trim Yankey stood on his front porch, smoking after finishing a beer. The modest Oceanside neighborhood of older homes was dark under the night sky; the most prominent light on the street beamed from Yankey's porch.
"I don't want to live in a plastic bubble," he said, that familiar sparkle dancing in his eyes. "I want to live."
'I feel so guilty'
Doreen Lee learned she had HIV in 1990, three years before she became pregnant.
She decided right away, at her doctor's suggestion, to become part of a national medical study designed to help pregnant women keep their children free of the virus.
Erik is 12 now. He does not have HIV. But he was born diabetic, his mother said, and suffered brain-damaging seizures when he was 5 months old. Lee said her son is developmentally disabled, his brain "frozen" at 4 years old.
Lee, 57, doesn't know for sure, but she suspects that her son's ailments might be traced to the AZT drugs from that study. Doesn't matter, she said. Even if she could prove it, she said, "I signed a paper" absolving the doctors of responsibility.
"I felt good that I did that study," she said as she sat in the living room of her crowded two-bedroom apartment in Vista. "There's more kids born without it now."
Lee spent her early childhood in an orphanage, and eventually ended up in what she says was an abusive relationship with a man she said passed HIV to her.
She said she senses that people demonize her less because she is a straight person who contracted the virus in a monogamous relationship.
"It's just time to quit the nonsense and care for people when they are ill," she said. "It doesn't matter how they got it. ... It's time we quit hiding. We have it."
Lee left the abusive relationship and has been alone with Erik since 1994.
In 1998, her virus progressed to AIDS.
As Lee spoke, Erik bounced in from his bedroom, sporting Spider-Man gloves. He mumbled distorted words to his mother, then headed out to play.
"Every time he goes out that door, I cringe," she said.
Children can be particularly mean to Erik. Recently, she went outside and found her little boy lying on the dirt of the playground of their apartment complex. He was crying; there was sand in his hair. Kids had pushed him down. The kids got meaner, she said, when they found out she has AIDS.
"Sometimes I think, 'Which is the thing that bothers me the most? The AIDS? Erik's diabetes? His mental condition?' I can't pick just one," she said, sighing and curling up on her couch. "I feel so guilty for making such terrible choices that affected him. I would in a million years take what he has and put it on myself."
She sighed again. "But I can't."
Lee cannot work because of her illness and money is very tight ---- it led her to move from a Fallbrook home to the cheaper apartment last year ---- but she volunteers one day a week at the Coordinated Services Clinic in San Marcos, which serves HIV-positive patients.
She takes HIV drugs and doesn't always feel well ---- "been on my deathbed three times now," she said ---- but said she's doing better on her current medicines.
"I don't know what would happen to Erik if I were to die," she whispered. A moment of quiet, then: "I don't know what would happen."
She struggles, but she says she wills herself to live.
"I promised God I would do this and do it till the end," she said. "I promised Jesus. Erik deserves that. ... Jesus knows my heart. He knows I really want to stay alive for Erik."
'I could see the fear'
For Stephen Roper, the pictures of the days when his illness had its fiercest grip on him "are too horrible to show." Back then, just a few years ago, his 6-foot-5-inch frame carried less than 150 pounds. "I could see the fear in people's eyes when they saw me."
Once, to keep from blowing away on one particularly windy day, he headed to the doctor's office with two lead weights in his pockets ---- and still only came in at 157 pounds.
He learned he had HIV in a September, but he can't remember if it was in 1988 or 1989.
"The date meant nothing," said Roper, who served in the Air Force for eight years. He has since been diagnosed with AIDS.
Sitting in his one-bedroom Lake Elsinore apartment, Roper worked on World AIDS Day materials, stuffing envelopes with letters as he spoke.
His framed poems fill the walls. In the center of one wall hangs a smiling portrait of Steve Johnson, Roper's partner of 16 years and "the love and inspiration of my life." Johnson succumbed in 2000 to complications brought on by the disease.
HIV took Roper's health and his partner, but not his spirit. It was after Johnson's death that Roper became an activist for the cause. He also began to write poetry.
As he spoke of Johnson, he stood, whirled around and looked at the photo. A smile moved across his lips. He recited one of his love poems, closing his eyes and moving his hands like a rapper, bouncing to the rhythm of his words.
"If I do my poetry, it's like I'm in a different realm," Roper said when he finished his impromptu performance. "It was how I purged myself."
Some of his poems address his frustration with the reactions he gets to his disease, and to being gay.
Hospitalized in 2002, he figured his "next stop was the cemetery." The doctors sent him home to die.
"The next day, I got on a bus and enrolled at Riverside Community College," he said. Deep chuckle. "Tell me to go home and rest? Yeah, right."
Back in the early '90s, when he was taking the drug AZT to keep the virus from progressing into AIDS, he kept his illness quiet. Twice, he recalls, he had a blood transfusion in the morning, and headed in the afternoon to work, weak but determined.
"Oh yeah, I had to. It was concealed," the activist said. "That's why I am so involved now."
He was taking medicines when Johnson died, but stopped shortly thereafter.
"I gave up," he said.
But he pulled out of his depression, and now his medicines fill a small cooler at his feet next to the easy chair in front of the TV, which was playing ESPN on mute. He is also now a medical marijuana patient, he said, reaching into his wallet to pull out his official identification card.
He attributes the medicine to his longevity. That, he said, and not listening to everything the doctors told him to do.
"I listen to my body," he said. "If it makes me feel ill, I don't take it."
'It was so traumatic'
HIV took love and companionship from a 62-year-old man living in Encinitas. He and his partner were diagnosed in September 1987.
"I won't forget the month or the year," the bespectacled man said as he sat in his living room. "It was so traumatic and unexpected."
The man contemplated suicide more than once.
"I couldn't deal with it. I was at the bottom and I couldn't get any lower," said the man, who asked that his name be kept under wraps out of fear of retribution from strangers. He brought up the recent hate-crime beatings at the Gay Pride Festival in San Diego.
"That stuff still happens," he said. "They might use AIDS as another justification to gay-bash. I want to feel safe in my own home."
He feels the chill from people who make moral judgments about him.
"There's a lot of people out there, and myself included, who say that we got what we deserved," the man said. "I wish I could say that it is 100 percent gone (within me), but I think there is still some of that."
He said he wanted to tell his story so that people newly diagnosed with the virus won't "go through the kind of terror that we did back then."
The day he was diagnosed, he said, he felt it was "absolutely" a death sentence.
"I couldn't sleep. I had this fear that if I closed my eyes, I wouldn't wake up."
With his salt-and-pepper hair and full face, the man does not appear sick, and his weight appears right for his height. He earned a degree in photography, but found work for many years as a bus dispatcher. He lives well now, retiring two decades ago, after coming into family money.
Earlier this week, as daylight washed through the living room of his airy Encinitas home, he flipped through his photo album, a soft smile crossing his face when he looked at pictures from the '80s, when he and his partner were vibrant, healthy.
He pointed one by one to the other men in the many photos.
"He's gone," the man said. "He's gone. He's gone, too."
A second later, another page, another photo. "He's gone too. Suicide."
AIDS. All of them.
His own partner died in 1995; he has been alone since.
The man said he used to suffer from "survivor's guilt," but has been able to move beyond that now.
He attributes his long survival with HIV to luck and his decision to forgo medicines in the early days of his diagnosis. And help from friends "has been an enormous emotional boost for me."
Cuddling on the couch with one of his two dogs as he spoke, the man also pointed to his work with animals as helping to pull him through the dark times. Over the years, he has volunteered at animal shelters and rescue centers, and for a while took in dogs to foster.
HIV and AIDS used to define him in his own mind. They don't anymore.
"It took me years and years to get to that point, years of staying healthy and without any major depression," he said. "I'm to the point where I have accepted the fact that I have no choice. I have to accept it."
And so, next September, he plans to throw a party to celebrate the completion of 20 years of life since his HIV diagnosis.
Contact staff writer Teri Figueroa at (760) 631-6624 or tfigueroa@nctimes.com.
World AIDS Day events to be held around North San Diego and Southwest Riverside counties
First marked in London on Dec. 1, 1988, World AIDS Day was designed "to generate greater public awareness about AIDS, to encourage political leaders to fulfill their promises on AIDS research and treatment, and to unite people for the common purpose of fighting AIDS on a global scale," according to its organizers.
Friday, 19 years after the first World AIDS Day and 25 years after the disease was recognized by health officials, the region will participate in a number of World AIDS Day activities.
Here's a look at World AIDS Day events around the region:
Carlsbad
Escondido
Vista
San Marcos
Temecula
San Marcos
Temecula
Riverside
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morty wrote on Nov 29, 2006 11:29 PM:so sad for these people. my brother inlaw was the first to die in san fran.that was a sad day.HOPE YOU ALL A HAPPY LIFE.
Tragic wrote on Nov 30, 2006 10:53 AM:If it is true this virus could have been stopped early on. From what I have read, egos of viral scientist/doctors prevented that. What worse is that this like other viruses mutates, wait until it finds a more aggressive vector mechanism. Then all of us might be in trouble.
Skip wrote on Nov 30, 2006 1:20 PM:TIJUANA – With one of the highest AIDS rates in Mexico, second only to Mexico City, the number of men and women aged 15 to 49 years who are infected with HIV may be as high as one in 125 persons. Tijuana could be on the verge of a major outbreak of AIDS. For the details, just Google, AIDS in Tijuana". And these are just some of the people illegally crossing our borders without proper medical screening.
PJ wrote on Nov 30, 2006 7:00 PM:A terrible disease that humans are usually exposed to when participating in risky behaviors. There are many such diseases brought on by participation in risky behaviors. It would be good for all to remember that when making the choice to participate in a risk that subjects us to such diseases, it could be the choice that changes our life forever, and probably not for the better.
keep hope wrote on Nov 30, 2006 10:19 PM:illegals are not the only people who can cross the borders and bring this disease. Nor can only people participating in 'reckless behaviour' AIDS knows no color boundaries nor gender/age lines. WE NEED TO EDUCATE OURSELVES. There are numerous ways that one can become infected. Playing into stereorypes is just blinding oneself from the truth. IT CAN HAPPEN TO ANYONE...... what we need to do is act now and pressure local reps to fund money into research and most of all be compassionate and supportive of the cause.
Paul wrote on Dec 1, 2006 2:20 PM:Another disease coming over from Mexico is TB. And this strain is impervious to anti-biotics. This strain is showing up in the school systems (let you guess where which kids it is coming from). While we are on that subject, did you know if you have TB, you are registered with the State. But if you have HIV you are not. Something about being politically correct.
PJ to keep hope wrote on Dec 1, 2006 9:04 PM:if you read my comment you'll notice the phrase "usually exposed to when participating in risky behaviors". As a health care provider in a large clinic where several hundred HIV positive clients receive their primary care, I know what I am speaking about. Participating in risky behavior (multiple sex partners, homosexual sex and IV drug use) are the primary behaviors that spread this disease and other diseases. As far as "pressuring reps to fund money into research ", I can think of no other disease that has drummed up support and political attention and funding like AIDS has. When one thinks of the years and years scientist have been working on curing cancer compared to AIDS research which started approx. 26 years ago and the gigantic strides AIDS research has gained in prolonging life compared to many cancers that still carry a death sentence, it's pretty interesting. Something about being politically correct, again. I can attest to the fact that there are MANY programs that assist HIV+ patients in meeting all medical costs. What question does a cancer patient ask? "How am I ever going to pay for all this treatment?" Oh yes, the special programs to pay for HIV patients are available for legal and illegal patients alike. I think the American people are being pretty "compassionate and supportive of the cause".
Reality wrote on Dec 1, 2006 9:49 PM:Peoplpe who make consciouos decisoins to engage in very well known high-risk behavior, as homosexuals do, get what they are asking for. Sorry, but no sympathy. My tax dollars should not be going to care for individuals who engage in this behavior. We have more deserving, innocent, people needing taxpayer money.
John wrote on Dec 3, 2006 5:18 PM:To reality, HIV is not just a Gay disease, Reality, Aids has wiped out whole African tribes, Desimated Nations.Africa and parts of Asia will never be the same.
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