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Main Forums => Living With HIV => Topic started by: DancerBoy on August 07, 2006, 12:01:19 am
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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.
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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.
Love,
Jay
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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...
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This is powerful.
Thanks, Zeph and Danny as well for posting this.
What a great service this is to anyone who reads it.
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Thanks Zeph...we appreciate all you do!
Hal
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Zephy,
You are an amazing woman!
Thank you for all that you do!
Hugs
Teresa
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I will read this article more when I have more time. I am right now on my way to work, so I cannot really read it now. Thanx, Zeph for all that u do.
RobT
9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
06/27/2006
Viral Load 42
CD4 409
CD4%age .21
08/01/2006
Viral load- undetectable
CD4 493
CD4%age .33
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Indeed Zephyr....
You are an amazing woman and I for one am proud they have decided to run your article. You do us all proud. Those of you who are on the fore front of this battle...giving your time and your life's blood...are to be commended. You're my HERO!
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AWESOME!!!
Zeph, you never cease to amaze me... I'm damn proud to know you and I thank you for all that you do. I love you Sis... You're an inspiration, you truly are honey.
I have a confession to make... I already saw the article. Zeph faxed it to me the other day. I just had to be the first one to have a look-see. :D
Zeph, this has been one hell of year for you -- "Independence Day" for sure. Now tell me darling, who's the disclosure whore? ;)
All my love,
Trish :-*
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thank you, star-lady, that took courage, lots of it.
flower for you..
kate
[attachment deleted by admin]
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Zeph:
I'll be anxious to read parts 2 & 3, but this 1st installment blew me away.
Good job, you are truly a monumental spirit and driving force for many.
RAB
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God Bless you Zeph! One day I hope to meet you! Remember sweetie, you're NEVER alone in this!
Lots of love to you!
Andrew
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Zephyr,
Thank you for being strong, and brave. It is a wonderful article, and you will help many people.
Christine
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Well Loreen, how's it feel now???????
Please remember, I warned you. Now it is up to you to take the reins, and guide this bucking bronc into the fields of wonder. Enjoy the ride, and make sure you don't miss the flowers along the pathway.
In Love and Awe.
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"It peeled away a layer." Boy oh boy does that ring true. It makes me ponder what's worse: living with HIV or having a heightened awareness of the surrounding world. Ignorance is bliss, so it is said, but whoever coined that phrase likely forgot to add that it's only that way for the ignorant.
Keep opening eyes and ears, Zeph!
Much luv.
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Hi sweetie, you were right, she did a wonderful job of penning the emotion of it. Can't wait to get the REAL copy of it from you in Montreal.
loves and hugs ;) :-*
"Secret AYYYYgent Man"
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I liked it very much. I am printing it to keep it. Please post the rest as soon as it is released. I also see it as a story of women suffering from HIV stigma, having to keep it secret. It is very emotional.
Very "nice" the nurse who gave you the bada news: "you know you are going to die". And I thought my "Bingo" was rude...
Hugs and kisses!
Juan
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thanks for posting this, Danny.
Zephie,
what can I say? You know how much I love you, and I never cease to be amazed at all that you are doing -- thus my post in "Off topic" dedicated to you and our other AIDSmeds ladies. You really do raise me up.
Hugs,
Alan
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Hello Dancerboy, it is Eldon. Thankyou for posting the article. I had asked Zephie about it last week and here it is!
Zephie, I admire your style and your encouragement, keep doing what you are doing. We are all behind you.
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Dear Loreen,
It appears that you have outed yourself and I could not be prouder of your actions. Without a real need, due to your health status, you have still chosen to step from the shadows and tell your story, so that others may benefit. You have officially stepped across the line and become an AIDS Activist, then again, knowing you, you could do no less.
In admiration and respect.
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Well done Zephala! I know that the decision to out oneself as HIV positive is never an easy one. You are much admired.
Love,
MtD
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Thanks Danny for the post. Zeph. Thank You! Thank You! I don't know if i have told you or not but you are one of the ones that have given me the courage to step up and get a support group going here. I have to say it again thank you so much. I can't wait for the next issue to come out.
Love Wendy
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Zephyr,
This is awesome.
It nearly brought me to tears.
Truly a selfless and courageous act.
ademas
xox
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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.
Thank God for Loreen!
And later we can say "We know her, she's so nice!"
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To the most WONDERFUL PEOPLE THAT I KNOW....
I have RIPPED THE SHROUD off of my shoulders, the weight of it unbearable after 14 years. I am more alive today than I have been for a decade.
I knew, last September, when I found AidsMeds, that my life was changed forever. I lived with a deep sense of knowing you were all out there somewhere, and indeed, it's true, change happened. All I was needing was a community who understood me, who could relate, would not judge and who were always there. MIRACULOUS.
Lydgate: (Jay)....Even the briefest of words can describe a mountain, and yours have done that for me this night. :-*
Cliff: Conjuring up the 'guts' to release this truth was a process sped up by each of you here on the Forums. You gave me the courage, and I will forever be grateful............thank you!
Andy: My father used to say he 'raised' 4 social workers (my sisters and I)........He was a 'people' person, himself, and brought all of us up to remember that service to our fellow human beings WAS the stuff of life. At middle age, I realize how right he was. There is nothing compares to what I am feeling right now, in the hopes that my actions will assist someone else. In doing so, i have helped myself!!
Hal: You are so welcome.......it's what family does for one another, my dear!
Teresa: What's that saying? BORING WOMEN SELDOM MAKE HISTORY? Umm, YOU are one of those history-makers, too, my dear!!
RobT: Honey, congrats on your Undetectable V.L.!! (And, for going to your job every day!) I get strength from you!
David: I am just a gal who had to finally lighten her load, and set herself free, no matter what the cost. Bless you, darlin', for caring so much!!
Trishie: LOL!! I'm BUSTED, that's for sure!! Remember what we did at the Sacramento Airport when you got here? It was such a thrill to disclose in public, I had to go the rest of the way! Thanks, girlfriend, I love you, too.
penguin: I have an American Indian friend who once called me what you just did, goodness, how pleasant to hear it once again. (star-lady).
She visited me once at a 100-acre parcel I lived on, that had a 360 degree view of the stars, and uttered this to me. Remarkable that you should do this a decade later, dear, complete with gorgeous flower!! I'm honored.
RAB: Dear man, each of us has within us the same 'monumental' spirit....mine just needed to find all of you before it could get fully expressed!
AC: It is good of you to say that I am not alone in this....I take that same comfort and hope to reach someone who lives isolated as I once did!
Thank you so much, and yes, would love to meet you as well!
Christine: Dear lady, I gain strength from all of my 'sisters' here on AM.......each of you are dear to me! Thank you!!
Moffie: !!!! Constant friend and confidante....you have lived this process with me this year........and into the 'fields of wonder' I will go!! As I have said so many times to you....this pony needed OUT OF THE PADDOCK!! Thanks for opening the door, dear friend. (And gosh, it sure is nice to see my real name on these Forums...wow!)
Wellington: Love your name, by the way. So distinquished. I have always tried to live with a 'heightened awareness' of the world, to understand the larger picture, and the different realities people live with; it is my certain goal to continue to open eyes and fill their ears with truth.
My 'secret agent' brother, John: Honey, I am so fortunate to know a man who sees things like I do, especially the emotional level so well put into words by this young lady, Sonya. I told her in an email today that it was if I was waiting for her to grow up and chose journalism as a career, so that our paths could converge, and she could relate how I truly felt. Amazing gal, and now, amazing friend, like you are. Love you!
BlondBeauty (Juan): Dearheart, your consistent and beautiful words to me always bring a smile to my face! These two other women were very brave, themselves, to speak out in this article, and my heart is with them, too. As for that nurse, gosh, would I ever love to see her again, and show her how very wrong she was...but somehow, I think she knows.
Alan, sweet soul: I have just put on Josh Groban so that I may feel closer to you this night. Your friendship and your constant, cariing words to myself and everyone here says it all...........I'm elated that soon I get to look into those loving eyes of yours!
Eldon: It is the knowing you are all beside me that keeps me on this path, that, and my faith. Appreciate every support from you!!
Joe, dear: I am so deeply touched by what you've said to me. I have hung on just about every word you've ever written, and been so inspired by your own efforts on behalf of our 'community' over the years. Just a few short months ago, on these very Forums, I was pleading to live a more 'authentic' life........there was only one thing blocking my path, and that was the connection with such outstanding people like yourself.
An AIDS ACTIVIST is what I have become, each story tucked inside my heart, and I can't think of anywhere else where I'd rather be. Thanks, honey.
Matty: MATTY!! Zephala has BROKEN OUT of what was quickly becoming a very small life, inch by inch, day by day, year by year. Stifled.Stalled. Numb. Not at all the person I was meant to be. Thank you for helping me realize there is more to life, yes, you...for your diatribes, your rails, your refusal to be NORMAL. That we can speak up, be true to ourselves. NO FEAR.
Wendy: Bless you, too, dear lady. I am so proud of what you are doing in your world, and am thankful I have been able to sow some seeds!!
Ademas: This long process was only possible when I released the need for ego, and focused on the benefit for many. And oh! What freedom there is in that.......thank you so much for your kind words!!
Allopathicholistic: I can only pray that this is the Grand Plan, my friend. My joy is knowing we are all together in this single, vibrant thought. See, and your kind words have just added more CD4's to my collection!
Please, consider yourselves all <<<<HUGGED>>>, you have all made me feel so special today.
With much love,
Zephyr :-* :-* :-* :-* :-*
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Wow Zeph! GREAT JOB! I can't wait for the next 2 parts. Awesome job. I am very happy for you and proud too! You go girl!!!!!!!!
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WOOHOO!!!!
Zephie, your patience (or was it persistance?) finally paid off. Congratulations one getting your story out there, as I know you have so been looking forward to. You are soooo right, Sonya really did do a fantastic job.
Can't wait to see parts 2 and 3. Can't wait to see you again...in just a FEW DAYS!!! :D
Big, Big hugs for you!!!
Love you,
Shane
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Zephie
You totally rock. We have much to be proud of in you !!! Thanks for being such an eloquent spokes person for us.
Your kind heart, gentle spirit and tough determination come shining through.
Big hugs
your 'kindred brother'
Paul xxxooo
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To two of my FAVORITE men... ;D
Shane...As you approach a turning point in your life as well, I want to say that I publically disclosed thinking about individuals like yourself.
The swelll of our voices is mounting, the time to deliver them is NOW. Let's join in our efforts to STOP THE SILENCE. Love you!
Paul...dear: You were with me to watch part of this process unfold, you heard the doubts, the fears as I climbed the mountain. It was due to
your wise counsel that I understood that maintaining the 'silence' would soon affect my health. I am so grateful for those hours on
phone with you while you were here! A zillion thanks, with much love.
My best,
Zephie :-*
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Zeph
Sorry to join the party so late but just wanted to say how proud I am of you.
Keep fighting the good fight. I hope your disclosure has taken some of the burden away - I know it does for me.
Honesty is Power
Pete
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Thanks, Pete,
You know, the disclosure really has released a huge weight for me...I find myself not censoring things out of my conversations with folks, something that always rubbed me the wrong way.
I've already had like four opportunities to educate people about the virus...they are relaxed with it because they know I am.
Thanks, hun, for chiming in! (This party is on-going...no lates involved!!)
Love,
Zephyr :-*
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What an amazing article, looking forward to parts 2 and 3.
What a great role model you are and just an Amazing Woman.
Doug
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Amazing article, Zephy!
I am so proud. It does show that ppl w/ this virus can lead close to 'normal' lives.
Thankx for the compliments. It does certainly feel good when ppl disclose. I felt so good when I disclosed my cindition to my parents, eventhough their reaction was different than I wanted.
I cannot w8 for more articles from u.
RobT
9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
06/27/2006
Viral Load 42
CD4 409
CD4%age .21
08/01/2006
Viral load- undetectable
CD4 493
CD4%age .33
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Hello Doug and RobT,
Appreciate your kind words!! Just wanted to let you know that we continue to wait for the release of parts 2 & 3....I will post them as soon as I can!
Hopefully, they come out before Tuesday next week.....I'll be on a plane for Toronto that day!!
My best to all,
Zeph