Nationally recognized for her expertise in HIV, prevention education, community outreach and not-for-profit management, Sheri receives regular media attention and recognition for her efforts to help HIV-positive heterosexuals move beyond social isolation and feelings of shame. Last summer, she was selected to present a poster exhibit, "Surviving and Thriving With an HIV Diagnosis," at the 2004 International AIDS Conference in Thailand.
Who have been your mentors? Who do you look up to, and why?
My mentor has been Mary Fisher, who went public on Oprah and proved that heterosexual women can get HIV. She showed me that I'm not a bad person if I have this disease. Dr. Jon Kaiser taught me that "healing does not come in little bottles." One of the first books I read was They Conquered AIDS, written by Scott Gregory and Bianca Leonardo. I read it from cover to cover. It provided many stories of survivors which included inspirational messages and health principles that I was able to incorporate into my own healing. One of the stories was about Niro Asistent, who had healed herself. So I thought "Hey ... if she can do it ... so can I!"
There's a few women who are not-for-profit business specialists who've been available to me, and the board president for my agency has been very supportive. Most of them are over 50 years old with knowledge and experience, so they help me keep my head on and not make mistakes.
What made you decide to speak out publicly about your HIV status?
I decided to speak out because I was frustrated. I went public in 1995 or 1996, and it was scary to give up that secret. But most of the spokespeople at that time were gay men, and I was a white, middle-class Jewish woman. The Dade County Public School system encouraged me to speak and that was so rewarding. Everything changes once you go public -- the pressure is off, the stigma is lost, and you become accepted. We're being understood now, speaking out puts a face on HIV and people embrace and respect you for that.
What do you think is unique about the audiences you try to reach when you speak out?
Every audience is unique, and I don't speak to one particular group of people.
What's the best thing about sharing your story with others?
Sharing allows people to identify with me. I don't look like the "typical" person with HIV. I don't want them to walk in my shoes, so I speak from the heart. It's a peer-to-peer exchange; it's real. I get to change and impact lives.
What's the worst thing?
I've never had any real negative experiences. It's just sad to see so much ignorance.
What do your relatives feel about you speaking out?
Those who know now support me and acknowledge my work. That didn't happen overnight, though.
What have you learned since you began speaking openly about your HIV status -- about yourself? About HIV? About other people either with or without HIV?
That I can speak and I am good at it. That I am passionate, and have confidence and self-esteem. That I can change the world with my words! My neighbors read about me in the paper, and they admire my strength, and that leads to greater acceptance, which is good, because there's still so much work to do.
Can you describe your feelings when you were first diagnosed? Did you feel differently a few months down the road? How long do think it takes to really process the diagnosis?
When I was first diagnosed, I was numb. It's like being hit by a train -- there's confusion, fear, anger, grief, sadness, every emotion anyone could feel. I was still in a state of disbelief a few months later, and for a year I couldn't even say "HIV" without crying. For me, it took about a year to start integrating the diagnosis.
Any tips for those who are newly diagnosed?
It's a new life sentence and you will adjust. You have to get off the pity pot and keep on living. Listen to your body and take care of yourself, and you can keep living longer. Don't disclose until you need support, want to educate, or are going to be intimate with someone -- people talk, and reputations can get ruined very quickly. No one can tell you're HIV-positive just by looking at you. You can't do it all by yourself, so get support from other HIV-positive people and educate yourself. Maintain a positive attitude and arrange your life so that everything is working for you -- stay away from poisons, including poison food, poison people, poison substances, everything. Everything you put into your mouth is either good for you or poison, so choose what you're going to take in for your health.
If you want to, can you share how you believe you acquired HIV?
Unprotected sex -- I was 23 and on the pill because I didn't want to get pregnant. I wasn't thinking about getting anything else.
What do you think is the biggest risk factor for HIV?
Not using protection and not communicating. And being ignorant and thinking it can't happen to you.
What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?
Come to my center!
Take it day by day, get hooked up with an HIV specialist for your baselines, and then don't give up on your journey or any of your goals.
If HIV were a person, animal, or object, what would it be? Why?
In my visualizations, I picture HIV as a Pac-Man game -- my immune system is the Pac-Man eating the virus.
What do you think is the biggest problem facing HIV-positive people today?
Stigma, isolationism, loneliness and discrimination.
What is the biggest change you'd like to see in HIV care? How about in HIV education?
I want everyone who treats HIV-positive people to receive national certification for that -- I don't want a doctor treating someone out of a manual. I want doctors to discuss emotional issues as well as medical issues, to have those go hand-in-hand. Help your patients get the support they need. We need comfort, respect, and dignity, so provide that.
For education -- well, my center provides HIV education, so that's not lacking in Miami if people want it. HIV-positive people need to continue receiving education all the time, through magazines, internet mail blasts, Web sites, whatever sources are available. The public is definitely not well-educated, and HIV is not in the mainstream discussion anymore -- awareness is totally lacking these days. I want to see billboards along all the highways that say "Call If Diagnosed," with resources and phone numbers on them. People should know what's available and know right where to go if they're diagnosed, and they don't know where to go.
When you look into your crystal ball, what do you see in the future for people living with HIV?
There will be an answer, and we'll figure it out. The body will be able to fight the virus off; we'll figure out something to put into the immune system to fight it.
How do you maintain a positive outlook?
I have great support. That didn't happen overnight, but when you go public you become unstoppable in a way. You become fearless and if you can carry that over into the rest of your life, you're taking control of the virus instead of it taking control of you.
What has been your overall experience with HIV treatment so far?
I haven't used antiretroviral therapies. I've had good experience working with holistic therapies, and I believe in the benefits of those.
What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?
My first CD4 was 520, and my viral load was 7,000 when viral load testing first became available in 1996 or 1997. Now my CD4 is 389 and my viral load is 29,600.
How often do you see your doctor? How did you choose your care providers?
This is my third doctor, and I see her about every six months for my baseline CBCs, or as needed -- which hasn't been very often.
What kind of relationship do you have with your care providers?
Do you have any health/wellness regimen that you feel helps you keep healthier?
I really believe in the holistic/complementary therapies services we offer at Positive Connections, and I take advantage of those services just as much as our clients do. We offer acupuncture, iridology, massage, Emotional Freedom Technique (EFT), Tapping, Reiki, energy therapy, cranial-sacral therapy, Trager/RESET, past-life regression, Body Talk, karmic cleansing meditation, yoga, chiropractic, medical intuitives, Johrei, trinity healing, electromagnetic therapy, and nutritional and vitamin therapies.
Any adherence tips for other people on treatment?
Yes: Don't play doctor. If your regimen is complicated or makes you feel worse instead of better, talk with your doctor. Communication is the key. They are working for you -- and if they're not, fire them!
If you are single, how has your dating experience been since you were diagnosed with HIV?
I've been very selective since my diagnosis. Dating is probably the most challenging and frustrating part of having HIV, for me. I'd rather be with someone, but I'm being picky. That's my own choice.
What is your strategy for meeting new people?
I'm not actively looking for anyone right now. If it's meant to be, it will be. I just keep my eyes open, and be myself wherever I go.
How soon do you disclose your HIV status to the people you're dating?
Pretty much when I meet them. If they don't already know, they find out from my business card -- it's right on there. Or I tell them to do a Google search on me, and they call back like "Wow!"
Any tips for dating that you can share with other people who are positive?
There is a big ocean run for and by the HIV infected and affected community, and there are many fishes. Go to my Web site and look at the links -- you'll see! You need to be careful when you're dating. Don't be desperate and run out and get married as soon as possible with whoever will have you. Someone will fall in love with you. Be careful when you disclose, but give them that decision to make on their own. That way it becomes no big deal.
Where did you grow up?
I grew up in Long Island, upstate New York, Queens, and New York City. I moved to Miami when I was fifteen, and then back to New York in my 20s.
What did you want to be when you were a kid?
What kind of work do/did your parents do?
My father is a landscaper, and my mom is a housewife. They divorced when I was eight years old.
What kinds of work have you done?
I've only been doing not-for-profit for nine years -- before that, I was a chef, caterer, party planner, and baker. I did some advertising and marketing as well. I decorated cakes, which was fun and creative work.
Who were the most influential people in your life, both professionally and personally? Why?
My best friends and my mentors.
What do you like to do in your spare time?
Read, lie in the sun, go shopping, go to arts and crafts festivals, attend wine tastings, watch DVDs. I used to make mosaics. I love dining out; I love good food. Travel is my number one enjoyment when I can afford it. I like to do adventurous things, have experiences, and make memories.
I have two female cats that I adopted from the pet rescue. Zoey is two years old, and Shayla is one.
Where do you live? Describe your community?
I live in a three-story condo here in Miami, right near Sky Lake. I can see the lake right now outside my window.
If you could live anyplace besides where you live right now, where would you live?
In a house on the ocean. I need to be by the water. One day I'd like to live in Costa Rica.
What's the biggest adventure you've ever had?
Oh, I don't know -- I've had many! Probably my travels. I've been to Thailand, flying for two days and then walking around listening to all the languages. That's where I met Richard Gere. I've explored Barcelona by myself. Actually, after I was first diagnosed HIV-positive, I went to Europe and maxed out my credit cards traveling around with a friend. She was already in Greece, so I flew over and met her there. Last year I went to Costa Rica with my cousin and stayed at a vegetarian retreat center in the rain forest. After she went home, I stayed in this little town by myself for a week, and just met people and made friends and had a great time traveling alone.
What are you currently reading? What book or author, if any, has had the biggest impact on you?
There are so many books here -- The Red String, Primal Leadership, Practicing the Power of Now -- there are just tons of books on this table.
As far as books that have had an impact, there's Mutant Messenger from Down Under, which is about a woman's experience living with Aboriginal people in Australia. Other ones are Tuesdays With Morrie, The Five People You Meet In Heaven, and Veronica Must Die.
What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?
I go through stages. U2 is probably my favorite, but I listen to all sorts of music. Ethnic, Indian, Middle Eastern, African, new-agey stuff, instrumental, flute and drumming. I listen to talk radio and educational CDs while driving.
Anything else you'd like the people reading this article to know about you?
I believe we have a contract with God, and that we're living, not dying. The clock is not ticking just because we have HIV. I believe people should have adventures and live each day to the fullest. Let's keep our immune systems strong; HIV will be manageable as long as we choose to manage it. And come on one of my cruises!
Interview by Laura Jones