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HIV/AIDS Blog Central

Hour of Destiny

By Loreen Willenberg

July 14, 2008

Sacramento, California

There are rare times in life when all the pieces of the puzzle fall into place. The launch of this Blog occurs at such a moment for me, and I am grateful to Bonnie Goldman and The Body for inviting me to share it with you.

As an HIV-positive woman in her mid-fifties, I hope to encourage others to strive toward their dreams, whatever those may be. I know that dreams do come true, because I am living mine!

Three years ago, I resolved to dedicate the rest of my natural life to HIV/AIDS advocacy through an interesting chain of events. As is true for all of us, HIV or not, there are many parts that comprise the whole, and through this blog I will eventually share the back story that lead me to this decision. Today, however, it must suffice to say that I have been walking this path since my diagnosis in July of 1992. There have been many players, situations and places that have contributed to the journey and inspired my arrival to that rare 'hour of destiny'.

Since the fall of 2004, my volunteer efforts toward HIV/AIDS advocacy have become the focal point of my life. As 2005 came and went and early spring of 2006 arrived, the questions inside my head were "How will you transition from your twenty-two year career as a landscape designer into paid advocacy work?" and "Is it even possible to make a living wage in the field of HIV and AIDS during this time of funding cuts?" After all I haven't got a degree in either public health or social work. It was during these times that I would recall my Mom saying "Where there's a will, there's a way…" and kept putting one foot in front of the other.

Four short months ago, with the financial support from my siblings, I moved to Sacramento. I brought my household belongings, Keena, (my fourteen year-old cat) and a big dream. I believed I would find employment in the nonprofit sector with an agency providing services to the HIV/AIDS community. In my minds-eye, I envisioned a job that would utilize my artistic background, administrative skills, love of people and nature, commitment to clinical research, history of volunteerism, and my knowledge about HIV and AIDS.

I fanned out resumes everywhere. I attended meeting after meeting to reconnect with colleagues on the Planning Council. I sent emails to my network. I contacted just about every agency in town and answered job postings by those agencies from craigslist, monster and career-builders. When I started my new phone service, I made lots of calls. Looking for work became a full-time job!

Two months passed, yet I kept the faith. Just when I was starting to think I should place my own ad on craigslist for landscape consulting services (a girl has got to eat, after all!), I received a return call from the facilitator of a women's support group to discuss an article I was writing for a local newsletter. During our conversation, I mentioned that I had grant-writing skills, did her agency need help with that process? She thought it might be a possibility, and promised to set up a meeting with her boss as soon as possible. Lo and behold, she followed up the call that very afternoon and invited me to the offices the next day!

The first thing I noticed in the Sunburst Projects office were two wall-sized collages hung on the waiting room walls. They showed hundreds of faces of children and staff members at a place called 'Camp Sunburst' with bronze plaques heralding the particular year of the camp. Both collages were impressive, colorful and alive, and I felt instantly happy to be where I was. I grabbed one of the brochures and learned that Sunburst provided services to children infected with HIV/AIDS and their families, with a special focus on women. I also learned that Camp Sunburst for kids would be twenty years old this year.

I was greeted by the facilitator, Mireya, with a big hug of welcome, who said Dr. Brooks was on her way in. I was sitting below one of those collages when I got my first glimpse of Geri, co-founder and executive director of Sunburst Projects, coming through the front door. A petite woman, sixtyish, with long flowing gray hair, she smiled as she reached out to shake my hand. Hugs with staff ensued, and soon I was ushered into a small office to the rear.

I offered Dr. Brooks my professional resume and HIV/AIDS advocacy biography to review. She looked up with a startled expression and said, "I need a professional landscaper at my home right now, I can't believe you walked in here today!" I was so surprised, all I remember saying was "Really?" as we three women laughed out loud.

Ah, synergy! It's a special event when it happens!

I told her I would be happy to assist her in my role as landscape contractor, and went on to explain the interesting transition I was trying to make. We proceeded to talk about grant writing opportunities and the background of Sunburst, and looked at the three-inch thick binder that represented the Ryan White grant proposal from their last application process. When she asked me if I thought I could help them write the next one, I said yes!

So, long story short, I did pull together her landscaping project, and worked alongside two talented men for the next three weeks to beautify Dr. Brooks' home. She made it possible for me to pay my bills and to get to know her in a way that I might not have otherwise. On the other hand, it gave her an opportunity to see me in my capacity as a project manager, coordinating a variety of tasks into a stream-lined whole, using the workers strengths and skills to achieve the desired result on her property, ordering supplies, deliveries, and tracking expenses and receipts.

What I did not know was her need to fill a vacancy for the position of Camp Director for the youth camps, and her concern over the lack of response to her job-posting on craigslist. All I know is that a bell went off in her head during our usual Monday update meeting, as I sat at her dining room table quantifying the number of bricks I needed to purchase that day for the project. She excused herself to make a call to her staff in Rohnert Park (headquarters for Sunburst Projects) to discuss her dilemma.

I will never forget her question as she rejoined me at the table, or the distinct 'click' of that puzzle piece locking into place -- as she looked at me and said, "So tell me, Loreen, have you ever worked with kids?"

To be continued ...

To contact Loreen, click here.

See Also
Life as an Elite Controller

Reader Comments:

Comment by: boldman (lagos nigeria) Sat., Sep. 20, 2008 at 10:54 am UTC
i tested hiv positive at two different govt hospitals in 2002 .in 2003 i tested seems as if my immunne system cleared the virus.note i had all the acute symptoms of hiv infection in do you explain this?
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Replies to this comment:
Comment by: Aegus (Austin, TX) Sat., Aug. 25, 2012 at 6:17 pm UTC
This literally just happened to me, I was tested positive in 2011 on ELISA, WESTERN BLOT and the further lab results came back positive with an undetectable load. Didn't have a reason to start medication, then in early 2012 I was retested for everything with a lab result. It proposed that HIV was no longer in my system. The Dr scratched his head and said, "We can no longer provide services for you as you are not carrying HIV-1." Told me to contact my personal Dr for questioning. I'm like, "Huh?!"

Comment by: Loreen Willenberg Sun., Aug. 3, 2008 at 11:49 am UTC
Toongirl - Thank you so much for writing. I am glad to hear that your friend is doing well - you can help to boost his immune system by being compassionate, and by understanding that judgmental references (..."when he was 'wayward'...") have no place in your friendship. Both of you will benefit!

Jeff: Thank you for sharing - and here are my simple words of advice to you: "Disclosure = Caring. All you have to say is, "Let's talk." I wish you good health and the best of everything!
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Comment by: Loreen Willenberg Sun., Aug. 3, 2008 at 11:36 am UTC
Hello Michael,
Thank you for your comments. My positive status has been scrutinized by the most brilliant minds in science. I know it is difficult to believe, but yes, there are 362 of us who are suppressing HIV in ways not yet discovered. Impossible? Miracles abound in the world, and I prefer to believe that one day, our rare group of HIV Controllers may help to unlock the mystery of this virus, and to advance science toward the development of a therapeutic vaccine. It is only a matter of faith.
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Comment by: jeff Sun., Jul. 27, 2008 at 4:37 am UTC
i just read ur experience and i am so i am taking medicine i am ok.but i want a advise because i had political problemes in my country. i live in a europeen country with some friends of my country,i have a girl friend but didn't inform them about it, now my girlfriend wants that we get married and i don t know how to inform her, and I don t want to loose her. please help me
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Comment by: toongiri Mon., Jul. 21, 2008 at 1:19 pm UTC
thanks for inspiring story. a friends been positive for 10 years now and not on medication. he's as strong as an ox and with high cd4. he does not plan on taking meds too. he is even sure he contacted the virus much earlier when he was "wayward." he is a believer.
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Comment by: Pradeep Sun., Jul. 20, 2008 at 10:08 am UTC
Your story is really inspiring. I am Positive and was diagnosed before 6 years. I think HIV is not a problem for us, because with the help of ARV drugs we are dealing properly with it, but peoples treatment to pos people is a big problem, at least in India. So I want to work for changing social attitude towards HIV + people. Keep it up and be a source of inspiration to us.
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Comment by: Loreen Willenberg Sat., Jul. 19, 2008 at 7:02 pm UTC
Hello Simon in London - I truly appreciate your comments about my little story, and it warms my heart to hear that it inspired you! Each of us can make a difference if we only reach out, we can never truly know how we may touch someone's life, if we do not take the chance. Please, do not lose hope, Simon, and hold your head up high. I wish you all the best in life, sincerely, I do!
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Comment by: Michael Sat., Jul. 19, 2008 at 2:46 pm UTC
I thank you for sharing your story with us, as I totally believe that there are a lot of people who are just like yourself out there who their doctors have told them they have tested positive for HIV, and yet for years like yourself you remain undecteable and CD4 counts well into the thousands. This is possible by false positive testing. I totally believe that if a person really is positive, then it would be totally impossible for them to remain undectable and high CD4 counts for as long as this. Let's not even try and start people on believing that they can treat this diease without medications.
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Comment by: Loreen Willenberg Fri., Jul. 18, 2008 at 4:28 pm UTC
Hello, Christabell,
Thank you for the congrats from Kenya..I am touched that you took the time to write me! You ask 'how do I manage this?' and my reply is: faith. Pure, strong faith. Faith in life, faith in people, and faith in myself.
As human beings, we must reach deep down inside ourselves to connect with our inner-strength...I know it is not easy, but that is what we must do.
Do not be afraid, trust in your instincts, take good care of yourself, and most of all, do not forget to love! That is why we are here on this Earth, we must not forget that.
Consider yourself hugged from California, and I wish you all the best!
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Comment by: Simon, London, Uk. Thu., Jul. 17, 2008 at 12:23 pm UTC
What an inspiring story. Having been diagnosed less than two years ago, I often think the future can only look bleak. Yet, at other times, I want to turn this into something good: to help people - not only HIV - through the added understanding that this virus will have given me.
So well done, and congratulations. I (we?) need more of these uplifting, inspiring stories.

All the best.
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Comment by: Christabell Thu., Jul. 17, 2008 at 11:38 am UTC
am based in Kenya, Just wondering how you manage this, since its been 4 years for me, Only my boyfriend and close friends know. My family does not know and am very vocal on advocacy but sometimes i get tired and wear out since i feel that my energy levels are going down.
Am not on ARV and am glad that am not I want to keep that way.
Please advise
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BLOG: Life as an Elite Controller

Loreen Willenberg

Loreen Willenberg
Photo credit: Bob Roehr

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.

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