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Zephy's Article!!! Part 1

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Locals aim to break the silence
Editor's note: This is part one in a three-part series exploring the lives of El Dorado County women living with H/V and AIDS.
Democrat staff writer
by Sonya Sorich
       On a recent Wednesday afternoon, Loreen Willenberg introduced herself, poured a cup of cold iced tea and prepared for her life to change forever..
       Her name in the past was something that graced professional contracts, personal correspondence and a sea of documents for the landscape consulting business she owns.
      Now, for the first time in the greater public arena, it would be preceded by "HIV positive”
      Sitting in her Diamond Springs home, Willenberg, 52 called the Mountain Democrat interview "my Independence Day in El Dorado County."
      An appearance in the county newspaper will mark the end of one journey accompanying her July 1992 diagnosis as being HIV positive.
      That diagnosis was later followed by distinction as an "elite controller," a subgroup of the virus' long--term non-progressors.
      Members of the subgroup may represent less than 1 percent of the global HI V-infected community, Willenberg said.
      She and fellow elite controllers are believed to be "able to contain the virus for years and remain clinically healthy," according to a Website for the HIV Elite Controller Study, led in part by the national Massachusetts-based Partners AIDS Research Center.
      The distinction has led to Willenberg's participation in multiple medical studies. Her ability to control the virus may one day serve as cornerstone in the possible creation of an AIDS vaccine.
      Physical health, however, is just one facet of HIV and AIDS. Willenberg'* apparent ability to control the virus physically has done nothing to exempt her from its. social and emotional components.
      After years spent navigating county roads while anonymously bolstering her understanding of the virus by which she is affected, the Diamond Springs resident is showing her face.
      Once again, she finds herself participating in another trial with an uncertain outcome.
      "Ultimately, I guess this whole story is one of faith," she said.
      And for some, that faith remains a destination in a journey designed to test it.
One of many

Just miles away from every local Independence Day, there is likely an El Dorado County resident writing another story of faith — faith that extreme, almost inordinate, self-reliance outweighs the stigma that could accompany public disclosure.
HIV-positive "M.V." and AIDS patient "W.B." are two such examples. The women, who agreed to be anonymously interviewed by the Democrat, fear the negative repercussions they believe would accompany widespread knowledge of their conditions.
As such, the initials used in this article are not reflective of their real names.
W.B., 49, spends her days tending to the deteriorating health needs of her husband, who also has AIDS. Fearing peer retaliation, her son, a student in the county school system, requested she not publicly appear in the newspaper.
Years ago, 50-year-old M.V — who lives in a community so closely knit she requested her area of residence not be specified — stood at the forefront of another state's efforts to heighten public education on HIV- and A IDS-related issues.
Now part of a major local employer's payroll, she wiped tears from her eyes when asked why she wants to be anonymous.
"I was born here and raised here," she responded without hesitation.
El Dorado County's rural ambiance and pastoral landscapes are accompanied by the stark, but often subtle, reality that no area is exempt from disease.
According to the California Department of Health Services Office of AIDS' March 2006 data, the most current information available at press time, there are 48 people living with HIV in the county and 61 people living with AIDS (May 2006 data).
Gov. Schwarzenegger in April approved legislation "requiring health care providers and laboratories to report cases of HIV infection by name to local health departments,” according to the DHS.
The three women profiled in this three-part series, represent not even a handful of those cases, but their gender is reflective of a demographic that characterizes more than one quarter of all new HIV/AIDS diagnoses, according to the Atlanta-based Centers for Disease Control and Prevention.
In AIDS' 25-year lifespan, El Dorado County's population, like the rest of the nation, has without a doubt been exposed to the international use of phrases like "40 million dead" and "25 million infected."
   But as rote recitation jeopardizes those statistics, and more sectors of the medical community direct their attention to the ambiguity of future threats, it becomes all too easy to disregard the most important characteristic of HI V/AIDS patients — the fact that they exist.

It could be you
Like 78 percent of new HIV/AIDS diagnoses among women in 2004, all three women believe they acquired their conditions through sexual contact
W.B/s' diagnosis came 15 year* ago, when she, was married and pregnant. During a routine pregnancy checkup, she agreed to an HIV test under what she described as a "sure, why not?" mentality.
She later found herself "collapsed on the floor in tears."
Her husband tested positive shortly after that.
After leaving an abusive marriage, M.V. tested positive 10 years ago in another state after sexual contact with a new partner who knew he was HIV positive, but didn't tell her.
"It's not someone else's responsibility to protect you," she said in retrospect. "One wrong choice and you could be going through what I'm going through."
And for Willenberg, entering the public arena for the first time as an HIV-positive woman, a lack of physical symptoms has hardly eroded the underlying reality that she is suffering from a preventable condition.
"It's a preventable infection. It's a preventable disease. And 1 can't say it any more clearly than that," she said.
Ironically, as the three women learned, it is often the most seemingly perfect forms of security that lead to the greatest level of isolation.

A perpetual slap

A nurse once told Loreen Willenberg she was HIV-positive - then added, "Well, you know you're going to die," Willenberg remembers.
She didn't. The false prognosis is now a mere memory for the Diamond Springs woman who could ironically -be a vital piece of a puzzle curbing the infection's severity.
What did die, however, was Willenberg's previously unchallenged concept of community.
"I felt like I was in a box. It was my first experience with just how ignorant people are," she said. "It made me more careful. It seemed to peel away a layer."
The anonymous women share similar experiences, citing being greatly uncomfortable after even the most confined disclosures of their conditions.
AIDS-afflicted W.B. cares for her husband's deteriorating condition from AIDS and begins her mornings by reading an inspirational book entitled "Starting Your Day Right"
Even against the backdrop of a self-described "hick-town mentality" locally, she remains in Placerville, regularly attending religious services in the county.
It's a position W.B. said she could use to further community education efforts. Her inquiry regarding a presentation to the place of worship's youth group, however, never yielded a response.
"I feel cursed," she said. "I'm cursed for the rest of my life. I don't have anybody to help me."
Anonymous patient M.V. said succinctly of the infection, "It affects every part of your life. And I feel like I'm going to be alone the rest of my life."
With condensation gently dripping from her iced ten, Willenberg said news of her 15-year-old diagnosis initially came not at a doctor's office, but within the private sanctuary of a dream.
"I was impatient for the validation of the dream," she said in retrospect.
That validation arrived, and for Willenberg and her anonymous counterparts, impatience has been replaced by a fluctuating variety of carefully chosen emotions.
Scarce finances.  Jeopardized employment. Broken families. They are elements once confined to surreal visions of fictional lifestyles.
Amid uncertainty, the women were almost instantaneously forced to dream that locally, their realities would one day be regarded as more than an eyes-shut picture of an outsider.
The alternative? Wake up to a nightmare.

Independence Day indeed! I'm at a loss for words, I don't know how properly to congratulate and honor you. I'll resort to understatement: I'm happy and grateful.


Thanks for sharing Danny.  I see it less as an article on elite controllers, and more as a story about three women coming to terms with their diagnosis.  It takes guts to be open about your status.  Thanks Zeph...

Andy Velez:
This is powerful.

Thanks, Zeph and Danny as well for posting this.

What a great service this is to anyone who reads it.

Thanks Zeph...we appreciate all you do!



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