POZ Community Forums
Main Forums => Living With HIV => Topic started by: zephyr on August 14, 2006, 04:00:43 pm
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To My Lovely Forums Family:
Again, who am I to question the timing of things? Here I sit, ready to go to the International AIDS Conference in 18 hours, and I'll be, guess what got published in my local newspaper this morning?? Part 3 of the HIV/AIDS series that began Friday, August 4th!!
Our friends, Moffie and Danny, have been so kind to assist me in posting the previous two; today, I'm going to save them hassle, and type this into my thread.
Front page, below the fold:
LIVING WITH HIV AND AIDS: Advocates speak out amid uncertain future
Editors note: This is part three in a three part series exploring the lives of El Dorado County women living with HIV and AIDS.
By Sonya Sorich
"Loreen Willenberg lives alone, but her quiet Diamond Springs home seems inexplicably crowded.
Between the conveniences of backyard gardens and unobstrusive glasses of iced tea, there is financial ambiguity, medical uncertainty and social
caution.
And, amazingly, a sense of validation stands at the forefront of it all.
"My voice is necessary and that's what this is all about," Willenberg, 52, said.
It was the way she justified a recent series of interviews with the Mountain Democrat, her first major entrance into the local public arena as an
HIV-positive woman. Fifteen years after receiving the diagnosis, Willenberg still describes it as a moment that made her feel "like I was in a box."
With participation in online diaglogue, as well as personal diligence in performing extensive research related to the infection, that box's walls
have expanded. Medical discovery of Willenberg's physical distinction as an "elite controller" -- a role that may characterize less than 1 percent
of the global HIV-infected community -- has put her at the forefront of scientific trials due to her ability to contain the virus for years while re-
maining clinically healthy. The position has left Willenberg not only medically unique, but also forced her to find a sense of purpose in both the
infection as a whole and the distinctive physical impact she has experienced.
"It's helped me to define my value even more," Willenberg said.
Time spent reconciling life with HIV has impacted the Diamond Springs resident's landscape consulting business. As such, she is now contem-
plating a future composed of what she calls "advocacy for life." "We want to halt this. We don't want it to continue being generational," she
said."
Individuals affected by HIV/AIDS -- especially those who live in rural areas like El Dorado County -- are forced almost instantaneously to find
purpose amid dead-end bouts with "why me?"
Often, that purpose exists in redirecting traditional priorities to a goal of heightened local awareness and education efforts. What happens, how-
ever, when fear of a potentially abrasive community response impedes that goal?
Continued, next post (I keep getting kicked off this site...grrrrr!)
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Article, continued...
"A woman we'll call M.V., 50, spent years in another state as a vocal advocate for HIV/AIDS awareness after being diagnosed as HIV-positive
approximately 10 years ago. That effort spanned newspaper interviews, leadership in grassroots campaigns and various other public appearances,
she told the Democrat.
Asked just minutes later to give her name for purposes of this three-part series, M.V. who works for a large local employer, declined, noting,
"Right now, mentally, I can't. I'm not going to let this affect this job."
Similarly, 49-year old W.B., who has AIDS and lives in Placerville, named a desire "to save lives" as her primary purpose in agreeing to speak with
the Mountain Democrat. But she, too, declined to provide her name, fearing the retaliation her child could see while enrolled in the county's
school system. The intials used in this story are not reflective of the women's actual names.
"If I can save one person's life, then I've done something wonderful. And that's how I feel," said W.B., whose husband also has AIDS.
But saving lives requires community reception, something both anonymous women say they have yet to sense in El Dorado County. Asked of
her long-term goals, M.V., a certified HIV/AIDS educator, said she envisions herself making presentations in local schools in the near future. The goal
seems incongruous with fear of a negative reaction from her employer, the chief motivation behine her anonymity in this three-part series.
It's feasible, M.V. acknowledged, that she could be speaking to one of her supervisors' sons or daughters.
Still, that route of public disclosure -- turning her attention to children rather than adults -- remains more palatable to the El Dorado County
resident. M.V. said seeing more young adults cognizant of AIDS-related issues could ease locals' understanding of her community presence. "Hope-
fully their parents will thank me for doing that," M.V. said of her goal to make presentations to children in local schools.
'Everybody wore out'
A focus on the medical response to HIV/AIDS has functioned partially as a double-edged sword -- while drawing attention to the infection, it at
times has also subtly aided in perpetuating a belief that a cure exists. "The clients are living longer due to the newer medications," said Dr. Kathy
A., executive director of the Sierra Foothills AIDS Foundation. To help pay for a diversity of medications, affected individuals often rely on federal
funding throught the AIDS Drug Assistance Program (ADAP), which provides medications for treating HIV and AIDS.
The program also helps purchase health insurance for eligible people.
An expanding collection of medications has helped keep many HIV-people stay alive longer while leading relatively healthy lives. The medications, however, by no means represent a cure. They often carry tremendous negative side-effects, and can dangerously further public apathy. "The public
view is that it (HIV/AIDS) is a diminishing problem and that it will go away, which is not the case," Dr. A said.
Getting kicked off again...hold on!
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Article, continued....
"That misconception is paired with a changing culture of advocacy characterized locally by a less-local infected population. In AID's 25 year lifespan,
Chuck Newport, a community health education coordinator for the El Dorado County Public Health Department, said he remembers when his "social
life literally was with a lot of infected people."
Now, things have changed. Minimal funds are available for furthering local education efforts, Newport said, and activists are harder to find. "Every-
body wore out," he said. "A lot of the activists died or moved."
Meanwhile, eerily, the disease has remained the same. Between 850,000 and 950,000 people in the U.S. are HIV-positive, according to the Atlanta-based Centers for Disease Control and Prevention. Of those, more than 25 percent are unaware of their HIV status, the CDC maintains.
"Everyone has to get ready for their lives to change drastically," Willenberg said. "HIV does not discriminate. It can happen to anyone now."
Eye on the future
It can happen to anyone.
The three women profiled in this series are merely a sampling of a local population for which concrete numbers are not known.
Equally uncertain are the implications of Willenberg's decision to publically disclose her condition as part of this project. She said she is braced for the fact that her face will now inevitably carry added significance to many. As it does, the faces of anonymous women W.B. and M.V. will remain blended elements in a cluttered local landscape.
After using their anonymity to publicly seek moments of sanctuary, it is in times of private reflection that the women are inescapably exposed. And, as they look into their mirrors struggling to find purpose in redirection, it's hard not to hear a simple urging that we should do the same."
Whew! Incredible story-teller, my friend Sonya. I'm stunned.
Now I understand why I didn't leave today for Toronto. I had to be here for this last part, free to step into the next chapter this life has to offer.
Thanks for reading, everyone!
Love,
Zephie
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A really great read, as always, Zeph. Sending good vibes your way in Toronto.
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Hello Zephie, it is Eldon. Once again, I must say that you truly have done an amazing job! I also want to wish you good luck in Toronto.
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Wonderful articles! Thank you Loreen for posting them for us, and for being so brave and honest!
Am curious to hear what kind of reactions you have gotten from your local community!
Blessings and hugs! :-*
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WAY TO GO, ZEPHYR! ;D
THANK YOU SO MUCH, ZEPH, FOR DOING THIS!
IN DOING SO WE'VE ALL BENEFITTED.
YOU ARE A VERY SPECIAL PERSON ;D
THANK YOU AGAIN,
PEACE & LOVE,
KELLY
(http://i55.photobucket.com/albums/g142/angels4kelly/GODBLESS.gif)
(http://i55.photobucket.com/albums/g142/angels4kelly/thuntitled66.jpg)
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Wow! The whole article is AMAZING! I can definitely see why you are so excited about the ripples this article is going to have. If you want change, you gotta ROCK THE BOAT! And that's exactly what you're doing - in a very positive, and very much needed way!
Congrats! My compliments to both you for having the courage to stand up and be counted and Sophie for being a DAMN good writer!
Molten-
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Zephy,
As always I'm in AWE!
Hugs
Teresa
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" Willenberg said. "HIV does not discriminate. It can happen to anyone now." ;)
Great article. I love it and I am going to keep it.
Read it under the effects of Sustiva. Took it 30 minutes ago and still feel normal.
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Hi Zeph--
Great series! I've never been so glad to be wrong (about it being published ;D ). I echo all the fond comments I've read in these threads (all 3 of them!). Intimate disclosures like this one require a lot of bravery, and you deserve a lot of respect for putting it out there. Someone, probably several "someones", who you don't know, will read your story and be helped by it -- right off the top I can think of 43 "someones" in El Dorado county who now have proof that they are not the only ones. (43 = fuzzy math -- number of HIV poz in ED county - 3)
Keep it up, darlin', and if you ever need any help, give a whistle. You know how to whistle, don't you?
XXOOXX
J.R. (who has been watching too much Turner Classic Movies lately!)
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That was wonderful Zeph. I am so honored to say you are a friend. You give me the courage to step out and get things going here. I hope you knock them off their buts in Toronto. Good luck and enjoy Canada.
Love Wendy
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You and the use of your name made the whole story! You have done a brave thing! I hope you get a positive response from your community! Way to go Zeph!
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You're the man Zeph.....wait....woman.....damn you know what I mean. You got grit lady, and I love that. Have a great time at the gathering. Hope to meet you at one someday myself.
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Sweetheart,
As you are presently winging your way to Atlanta, and on to Toronto; I find this final chapter such a warm end to that chapter of your "Coming out" process. Interesting comment from my Sweetie this morning at 5am, "now she will be free from the dred of others 'knowing', free to spread her wings and fly, free of any power that those that would do her harm might force on her had she not come out, basicly free to walk unencumbered into the future and whatever that might bring to her". And you wonder why we get up at 4am to share coffee and thoughts........ Hee Hee. :)
All I can say is that I am proud to have met you, happy that you are so focused on the work of HIV, and at perfect peace that Loreen Willenberg will be blessed and guided on this pathway she has now chosen.
In Love and Support.