My Legacy is My Work!

Today I turn 57 years old. Honest to God I had no idea that I would make it this far. I've been living with HIV for 36 years. When I transitioned to AIDS is was a death sentence and that is a fact. I try to explain to people that it was a lot of things that kept me here. At the top of the list is the God factor. But then there was an phenomenal doctor at the top of her game, treating women with HIV because she felt  it was the right thing to do. Dr. Mardge Cohen  fraught for me when I could not fight for myself, but equally important, I did everything she asked of me. I took all the medications that made me deathly ill until something came along that was better and more tolerated and less pills. Well, I'm on fifteen a day now, but that is better than 31. I am grateful to be alive.

As I complete my memoir Unprotected, I've been giving my legacy a lot of thought and some research. When I started speaking in Chicago High Schools, I had no idea that I would end up on the cover of Essence Magazine. Twenty-five years later my ground-breaking cover story has had an phenomenal impact in the history of the AIDS Pandemic.

One of the Founders of Essence Magazine- Edward Lewis, said in his memoir that was published in 2014 that my 1994 Cover Story was the number one December newsstand seller of all times. Now that blows my freaking mind.

Well I've been doing a deep dive on my legacy and I'm learning things that I have never knew about the reach of my work in the last twenty six years and I'm humbled.

Here are some of the books that feature my work as an AIDS Activist, My Journey Living With AIDS and the impact of the Essence Magazine Cover.

Tap Into Your Own Power!

Today is National Women and Girls HIV/AIDS Awareness Day and my message is unwavering. We have to tap into our own power. We have to make the decision to put ourselves first, love ourselves first and absolutely love ourselves more than wanting and needing a man in our life.  

Now don't get me wrong, there is nothing wrong with dating and love and all that good stuff. There's even nothing wrong with sex. Studies show that people who have sex are happier beings. 

It's just, the decision that you make about your life and body should be rooted in self-love, not the love or desire for love that you have or want from another. If I've learn one thing from other women in the twenty-two years that I've been educating about HIV/AIDS, it's this, the only person that will keep you safe in the end is you.  If I had a dollar for all the stories women have told me about what they thought about their relationship that was not true, I could get me a cute designer bag. 

We make decisions everyday about our lives, based on what someone has told us that we believe, what we assumed and even what we hope for our future. When we should be making decisions on what we know to be true, for sure. We plan our future down to the last "T" but when it comes to dating and love we sometimes get so caught up, that we start making decisions that leave us vulnerable. 

Let me use this example, if your employer told you that your job was going to end. They don't know the date, but for sure, it was not going to last.  You would start looking for another job in spite of the fact that you continue to go to work  everyday. You wouldn't keep hoping that the job wasn't going to end, you would prepare yourself. In fact, even if six months had passed the stress along of waiting for the ball to drop would make you get the hell out of that place.

But if a man tells you that he does not want a relationship, yet he keeps calling, texting, soaking up your space and diving into your goodness, you would rationalize that he eventually will come around. "He must like me," you say to yourself, "but maybe he's afraid of commitment." His behavior makes you  think that one day he's going to say, "I want you as my woman for real" *blank stare* But the man done told you that he does not want a relationship and he meant that shit. That's why he has never introduced you as his women, in spite of how he treats you in private . You keep holding on waiting and wanting and losing a part of yourself with each passing day. Ladies, I'm a witness that the idea of a healthy relationship does not make it true. Just like when the boss say that they are closing the doors, coming to work everyday does not change that fact.

I keep asking why we make these decisions for ourselves that our unhealthy in search of what we think will make us whole. When in fact the only thing that will make us whole is living from our soul.  We live from our soul when we make decisions that lift us up in every single way, mind, body and spirit. Oprah says all the time, that we are responsible for ourselves and that is a truth I will bank on. Yet we surrender ourselves in the name of love.  It really is up to us to take control over our lives and our bodies. Our body belongs to us, our life is our own and some of us treat our designer handbag better than we treat ourselves. 

My suggestions to take control over your life and body.

1) Insist on Condom Use. Every time you have sex without a condom you put your life against that sexual experience and for sure there is no sex worth your life. I promise, if you tell him, no condom no sex  and mean it, he will adjust. If he doesn't want to adjust, you have to not only ask yourself but also give an honest answer, is sex without a condom a risk I'm willing to take? Am I prepared for the consequences of what I don't know?

The reality is this, it's 2 to 1 that a man will infect a woman with HIV and 20 to 1 that a woman will infect a man. Furthermore, over half of the cases of women infected with HIV are through heterosexual sex. We continue to have unprotected sex a decision that is made on what we think we know or we do it in the heat of the moment. Passion will not save your life, neither will your assumptions about your partner. For sure, If the penis ain't in your pocket you have no idea what it's doing when it ain't with you. I say often, "I hope what you think you know about your partner is true."

2) Everyone who has ever had sex needs to be tested for HIV. When people say they don't want to know, I say that's some stupid shit. Why wouldn't you want to know about a medical condition that can be treated and with an early  diagnosis and virus suppression you could live a long life.

It's 2016 and every 10 minutes a person still becomes infected with HIV in the United States. Furthermore 38% of newly diagnosed HIV cases are of people that were infected by someone who did not know that they had HIV. Testing along can reduce the cases of new infections.

I have HIV and I insist that my partner have an HIV test. First off, I don't want to live in that kind of ignorance for him or myself. Most importantly, I am not trying to get re-infected with a different stain of HIV. What I have is more than enough.  By the way, a man can't tell me he got tested a year ago and let it ride. I have no idea what you have done with your penis in the 12 months prior to me. 

Testing for HIV is one of the best things that you can do for yourself. Staying in that ignorance could mean  how long you live or how soon you die. If you test positive  the better off you are in terms of life expectancy. The earlier they suppress the virus the healthier you will be. I know you think you know, but honesty, you don't know until you  take an HIV test. Living in what you think you know rather then what you know for sure is not a healthy lifestyle. I bet you know how much that handbag is that you want so you can get your money in order. *Blank Stare* But you don't know your HIV Status?

3) Have a talk with your partner. I find it so strange that when we talk about sex, we leave out some of the most important things. We know what position he likes best and that is important, and what you like it is equally important. But have you sat down and talked about HIV testing, condom use and other sexually transmitted disease. Have you even opened the door for the conversation? So many people are living with herpes and HVP, not in secret, not just HIV. You must to be willing to have an adult conversation about sex and how it happens with your partner. It makes for a healthy start to any relationship.  

So how to you talk about sex? At the kitchen table with all your clothes on. You cannot talk about sex, condom use in the moment of passion.

4) If you are infected with HIV. Get into treatment and care and STAY in treatment and care. I know it seems like an overwhelming burden. You send me messages about your struggle. But if I can do it for 33 years so can you. Think about this, when I was diagnosed there was no treatment, then came AZT, then can DDI then came more and more and more. I kept doing what my doctors asked of me and it saved my life. I want you to live a good life and the earlier the virus is suppressed the better off you will be.

a) Take your medication as prescribed

b) Talk to your doctor, ask questions, Co-partner with your care.

c) Get a support system. YOU CANNOT DO THIS ALONE

d) Get into some kind of therapy. Depression is very common with HIV and you don't need anything working against you

e) Find you a spiritual outlet

f) Find a community for yourself via social media. There are many people who follow me on my different social media sites who are positive and my post inspire them to keep going. Community is very important. YOU CANNOT DO THIS AlONE!

At the end of the day, I want women to  know that we have so much unspoken and untapped power! My challenge to you today, whether  you are infected or affected is to tap into the power within you, for a better you! Namaste

In honor of Women and Girls HIV/AIDS Awareness Day the Office of Women's Health is sponsoring a blog hop. Please check out  the blog post of my partners for today.

Rae Lewis-Thornton Diva Living With AIDS Blog (Twitter, Instagram, Facebook)

Charreah Jackson,  Essence (Twitter, Instagram, Facebook)

Karyn Lee,  Red Pump Project (Twitter, Instagram, Facebook)

Dr. Hazel Dean, Black Doctor  Twitter, Instagram, Facebook)

Aging With HIV/AIDS

I've said it before, I never thought that I would live to see perimenopause, but I did. While I'm glad to be alive, I've got to admit, menopause or pre-menopausal  which is what I'm gong through, is more than a notion. Now, menopause is when your menstrual cycle has ended, no more, done. Perimenopausal is basically, everything a woman experiences leading to menopause and you still have a cycle.

While every woman will have to go down this path, studies show that women with HIV have more severe perimenopausal issues. We tend to begin menopause earlier at 48-49 years of age.  This is true for me. I started having hot flashes at 48. Women with HIV tend to have more severe hot flashes, depressed moods, irritability, sleep problems and all of this could lead to issues around adherence to HIV medication and ones overall well-being. As well as, a greater risk of heart disease.

It's interesting, older women don't really talk about menopause much other than hot flashes. When I was younger, I laughed off the topic with a shrug like most young women.

We go through most of our younger years not really seeking any information on menopause and then before we know it, the months have turned into years and 25 into 50 and we find ourselves knee deep in it and don't have a clue. As a woman living with HIV/AIDS, I'm learning that there is a heavier burden for me as I go through perimenopause.

This is at least true for me and I'm finding it difficult as I muddle through. For the longest, I've suffered through hot flashes. A hot flash is heat consuming your body like an inferno on the inside coming out. For a good two years, hot flashes were a thorn. Then they went away, then they came back, then they tapered off. Which is where I'm at now; a hot flash every now and then.  But when I have one, it stops me in my tracks.

Now perimenopause is far more then hot flashes. First off, this thing with the menstrual cycle, it just won't go away and when I'm this close to being done, then BAM! That's what happened last week. I hadn't had a cycle in 7 freaking months, then BAM! For me, having a menstrual cycle is not a breeze. I also have endometriosis, so my cycles tend to be heavy in the cramping; like someone has their hand up my vagina up to my uterus yanking down.

Yep, that was last week. Then these night sweats. Now night sweats are scary to me. Let me explain. Back in the day, night sweats were common for people living with AIDS and it often meant some kind of infection. So when my night sweats started back a few months ago, I went to my HIV doctor in a panic. She tested me for everything HIV related and all my test came back normal.  So the night sweats that I'm experiencing are clearly caused by my perimenopausal status.

For the last 3 months or so, I wake in the middle of the night soaked. The weekend was the pits. Friday night I had to change my gown about 4:00 AM. But Saturday night was the pits. I woke up wet, wet, and wet, my gown, my sheets, my pillows, even my blanket was so wet that I  had to remove everything. This happens at least 3- 4 times a week, where I at least have to change my night clothes and shift to the other side of the bed, and sometimes it happens a couple times in one night.

All of this means my sleep is deprived and I have to then get up and start the day tried on top of the HIV fatigue that I have a few times a week. I'm not sure how I've been making it these last few months and keeping up with my projects. Somedays I press through it, never really complaining.

Saturday night was the worst in terms of the level of my wetness so far. Needless to say, I woke up sacred. I thought that I had peed on myself . The first thing I did was smell my gown and sheets. Finally it hit, there would be no way for urine to make it to my pillows. Relieved somewhat,  I got up and changed my gown and sheets. I eventually fell back to sleep and when I woke for the day, I was wet again.  It was one rough night.

For sure, waking up in the middle of the night 3-4 times a week is interfering with sleep. We know that sleep is important for everyone, it is especially important for people who's immune system is compromise. Lack of sleep in and of itself does a number on the immune system, people living with HIV/AIDS don't need anything extra to effect the immune system negatively.

Then on top of the night sweets, which are depriving me of sleep. Some nights I have a hard time falling to sleep. The doctor prescribed medication back in the fall and for sure, if I don't take it, I'm still awake come 2:00 AM. I've learned my lesson so I take it, but it makes me a tad groggy in the morning. This means a few mornings out of the week I'm groggy from the medication and tired from waking in the middle of the night from the night sweats. It has been a vicious cycle.

Additionally, perimenopause has caused me to  have what's call atrophic vaginitis, which is inflammation of the vagina due to the thinning of the lining. Now some women actually have a very dry vagina. For me, I have thinning in the uterus, which makes it raw and sore. I also have this rawness on my vulva area at times. It is quite uncomfortable to say the least.

Bone Scan

While most perimenopausal women are at risk for Osteoporosis women with HIV are at an increased risk. HIV actually causes bone deterioration for both men and women living with HIV. A year ago I had a bone scan to get my base line and we discovered that I have already started to lose bone.

This is one reason I  keep trying to convey to people who are not infected. You do not want this infection. We can treat you and you will live a long time, but there will be problems the longer you live with HIV, no matter how good you feel today. HIV does damage to the body, bottom line.

Lastly, these freaking mood swings. One day I'm happy go lucky and the next day I'm not in the mood for bullshit. In the scheme of things, I'm happy. I feel good about life and what's happening in my life so I shouldn't be this emotional.

The biggest issue for me is that the mood swings have effected my productivity. Somedays I have to make myself push through, especially when I'm sleep deprived.

There is also an impulse to emotional eat. I gained 5 pounds back over these last two months from not working out and emotional eating. I'm trying to eat back on track but it's a challenge. I've decided that I can not bring certain foods into my house. I just can't.

Needless to say, I'm headed to my gynecologist Tuesday! I'm fed up right about now and need a solution to this madness. I know that diet and exercise can help some of these perimenopause symptoms and I'm trying to get back on track. For sure,  I need some extra help and I'm going to seek it out.  I always want to live my best life and so I do the things that will render the best outcome.

This weekend was really really rough for me all the way around. Oh, by the way, it's 5:00 A. M. Monday morning and I'm up writing this blog. I woke up at 4:00 A. M. to change my night clothes and I couldn't go back to sleep. Yes, I'm glad to be alive. Yes I'm tough beyond understanding. Yes, I will work through it all. I always do, that's what makes me me. But, being super woman does not take away the super hard and that is a fact.

For sure living with HIV/AIDS long term has presented tons of challenges. Now as I age, I'm having to consider the issues that effect every aging woman at an even more complicated level. HIV is the gift that just keep right on giving; that is for real and it ain't never pretty and some days I wish that I could just give it back.

A Woman's Vagina Should Not Be A Pawn...

I was speechless when I watched this video that one of my Twitter followers, Ann sent to me. As I was shaking my head, I had to look down at my PJ's and remind myself that I am a woman, with a vagina and HIV.

So this guy Mike Frey actually said a woman's vagina protects her from contracting HIV. This reminds me of the 1987 article in Cosmopolitan Magazine that said a, "Woman with a healthy vagina couldn't get HIV." That was 1987 when we didn't know that much about HIIV and they still got picketed by Act-Up.

This is 2013, thirty-two years into the AIDS Pandemic and HIV/AIDS has had some of the most ground breaking research in a short period of time. To think that someone actually believes this crap and would part their lips and say it. *Blank Stare* Not only was his information WRONG about woman, but it was also WRONG on the why same sex male's contract HIV.

The internet is buzzing with articles challenging his views on male same sex and HIV, but I've seen very little on what he said about women. I get it, Gay Activist are on their A game and I ain't mad. So my blog post is not on the same sex point  or same sex marriage that Mike Frey tried to make; I'm speaking for and about women. But just so you know, I do support civil unions of the same sex.

I so dislike when people USE HIV to spread hate. If you don't support same sex marriage then say it. But don't push some ill-informed, jack ass reason to support your position.

I practically dislike men using women's vagina's for their politics. When I was in undergrad I did a 30 page research paper looking at how men have used a woman's vagina to promote there political agenda, usually around birth control, but even around issues of race.

The problem with misinformation around HIV, for both Women and Men, could be the difference between life and death.

To tell women that they can't get HIV through heterosexual sex and to speak it with authority is just pure sinful and irresponsible..

So he claimed that female to male sex is safer because a woman has a, "Barrier of cellular tissue that doesn't allow the sperm... to penetrate the blood flow," but anal sex doesn't have this protection. With 34 million adults living with HIV world-wide and approximately half are women, I wonder what planet is Mike living on?

The fact of the matter, women are generally at greater risk of heterosexual transmission, meaning it's easier for a man to transmit to a women, then for a women to a man. According to the HIV/AIDS Charity Avert, "Biologically, women are twice as more likely to become infected with HIV through unprotected heterosexual intercourse than a man."

According to the U. S. Department of Health and Human Services Women are at greater risk for infection through heterosexual contact for the following reason:

• The vagina has a larger area (compared to the penis), that can be exposed to HIV-infected semen.
• Semen can stay in the vagina for days after sex, while men are only exposed to HIV-infected fluids during sex. Semen left in the vagina means a longer exposure to the virus for women.
• Having untreated sexually transmitted infections (STIs) makes it more likely for a person to get HIV. This is especially true for women. Small cuts on the skin of the vagina are hard to notice but may allow HIV to pass into a woman's body.

In the back drop of Woman and Girls HIV/AIDS Awareness Day on this pass Sunday, I am aware of the fact that we must educate our women and girls about their risk factors around HIV/AIDS.

While treatment is great, I believe that prevention is our best defense against this disease. We cannot save lives with half-truths and misinformation. I have no idea who Mike Frey is, but what I know for sure is this kind of misinformation coming out of his mouth is dangerous.  I was reading some of the comments people made on line at various articles on this topic and for sure, people cling to crazy out of the fear of the truth.

When a woman believes the truth that she is at risk for HIV, she has to then adjust her behavior to meet this new information. Half truths are easier to embrace sometimes. Who wants to believe that their boyfriend  or even husband, could put them at risk? Who wants to think about using condoms with that man who is your best thing since slice bread? The truth then becomes the barrier between what you hope for  in a relationship and what is the reality.

Condoms have become our enemy that is buried under the hope for a better truth; My Partner will keep me self, I am not at risk, I'm in a monogamous relationship, He loves me...

But when you pull the layers back, the most profound question you must ask yourself is, how much do I love me?

In 2013, we have come a lone way. But clearly Mike Frey has reminded us how far we still must go. We must challenge misinformation head on. The TRUTH is our sword in the fight against new infections, against stigma and shaming.

 A Man who cannot respect the truth about a Woman's vagina, should not be privileged to enter it.  And a Woman who loves the love of a man, over the love of her own vagina, is living in the world of Mike Frey.

A Woman's vagina should not be a pawn... Bottom Line.

Diva!!

Dan, Yonnie, Ashley Shooting in my home!

Over the years I've allowed cameras into my life. Mainly as a way to educate and challenge stigma around HIV/AIDS.

Nope it's not fun, but rather intrusive. I do it because I believe it's important to use every tool available to educate around HIV/AIDS.

I want people to understand that those of us living with HIV/AIDS are "normal" too. I also want people to understand that HIV is no cake walk. Yes, we can treat you, but this is not the best life for you; Therefore, protect yourself because HIV is real and does not discriminate. Just so you know, all the press that I do is free. Every magazine cover, news article and television interview. No one pays for what they consider, "news." So I truly do this from my heart. I see every single interview as a part of my ministry.

Back last spring, I had three Northwestern University students approach me about their class project; Dan Q.Tham, Yonnie Yang and Ashley Yates, asked if they could follow me and do a story short documentary for their class.

I said yes because they are future journalists and should be encouraged to report about the issues around HIV/AIDS.  When we started  the project, they didn't have an angle, but as they shot footage on me, they decided to focus on an area of my life that no one has ever done, my glam!  I've often been asked if I've always had this flair for the finer things in life, or did it come with my quasi fame. Truly, this has been  me since for as long as I can remember. I did a blog a while back on The Making of a Diva... Click Here To Read!

Their focus on Diva made me a  a bit nervous because I didn't want people to get the wrong impression and miss my message. But they actually were able to capture my life in a very creative way. I even let them shoot footage of me at the hair salon, which I've never done.

On one  particular day they were scheduled to shoot footage after a doctors appointment. That day I had an unexpected biopsy on my vulva. I did not want to do it, but they insisted. In the end, while I was a crab puff to put it lightly, I think it was an important part of the story.

People see the glam, but almost never see me on those days when I'm not doing good. This was a great documentary and I'm glad that I allowed them into my life. It was a side of me that is rarely seen, but a part of me nonetheless.

Two weeks ago this short documentary Diva premiered at The Talking Pictures Film Festival  at Northwestern University and was a great success.

I want to share it with you today: Diva!


Diva from Yoonie Yang on Vimeo.

World AIDS Day 2010: A Retrospective

Sixteen years ago today I appeared on the cover of Essence Magazine as the first Black woman to tell her story to a major publication. It was brave of me to tell the world that I had AIDS. Back then we saw AIDS as mostly white gay males. And if by chance a woman did have HIV, in the minds of most, she had to be an IV drug user or something close to a street walker. The idea that  a “decent” woman became infected with HIV was far fetched.

Then my story changed everything, especially for African-American women. Through my life we told women that even education, economics and a monogamous relationship did not necessarily keep you safe from HIV. It was bold for both me and Essence. Even the idea of putting a no-name woman on the cover of a magazine reserved for super models and celebrities was risk taking at it's best. But it paid off. It was one of the highest selling December issues ever and we achieved our goal. Black women across the United States started to rethink their relationships and sexual behavior. In fact, women still reach out to me to let me know that my story changed their life. I'm proud of that fact.

The cover of Essence changed my life and put me in the center of the fight against HIV/AIDS. Honestly, I had only been speaking for about six months when Susan Taylor asked me to do the cover story. Prior to that I had been living in secret and shame with HIV for about seven years. Then I made a transition to AIDS and I was staring death in the face. I started to disclose to friends and God started working out it all out. I accepted this new role for my life with transparency, grace and dignity.

I was on a mission to tell as many people my story before I died and I met this challenge with zeal. When my t-cell count was eight I was maintaining a breakneck schedule. AIDS was a sexy topic and I was at the center of it all. Eventually television came calling. The Oprah Winfrey Show.  Nightline followed me for six months and featured me three times. I even did a a series of first person news reports for CBS News Chicago that won me an Emmy.

But then things changed. I didn't die. I made it to the turning point in treatment, protease inhibitors. Things first changed in my personal life. My husband had married me to watch me die. He was gonna go around the country and talk to people about his life as my caregiver. But the longer I lived the more difficult the relationship became. He didn't know how to deal with my living. It became so bad, that I decided AIDS hadn't killed me, he wasn't going to kill me either. I found myself rethinking my life. I went to seminary and got my Master of Divinity to expand my work.  And I'm working on my PhD in Church History. I had always seen what I do as ministry.

I continued to travel and speak and the longer I lived the less sexy the topic of HIV/AIDS became. I saw a sharp shift in newly diagnosed cases of Black women and a lack of interest all at the same time. Essence hadn't been enough. But I never gave in or up. I continued to press forward and so did HIV. Black women became 72% of all new cases of HIV and AIDS became the number one killer of African-American women between the ages of 25-44.

So today I am saddened by it all. I mean it's World AIDS Day and I don't have a speaking engagement. Come on, I'm one of the most name recognizable Black women in America with AIDS and I don't have a gig today. It seems all surreal for me.

So I'm sitting here on my sofa wondering when will the tide turn. I'm wondering when will it ever get better?  When will the tide change for the better? When will the numbers decrease for African-Americans, both men and women? What will it take to make AIDS important today. Just as important as it became for white gay men in the 80's and  early 90's.
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I have no answers to these questions that others need to help answer, I can only speak for myself. I will cross every T and dot every I until the day I die. I will take my medication and live as good of a life as I possibly can until my earthly purpose is over.

I will also continue to do the work. So just because I didn't have a big fancy speaking engagement at a college accompanied by a check to help pay my bills, that's real, I'm still forging on. Still doing what I do best. Because my life and work is ministry. I will walk through whatever doors God opens for me and I will continue to do it with grace and dignity until the day I die.


My World AIDS Day Schedule...
 5:45 a.m. cst-  NBC Chicago News Interview (Live)
9:30 am cst- Fourth Presbyterian World AIDS Day Workship Sevice
12noon-1:00-cst  Twitter Chat with the Boss Network
1:00-5:00 pm (cst)  Question and Answers on Twitter and Facebook
I will be going back and fourth between the two Social Media Networks
Featured on BET.com
Featured on BET 106th and Park shows airs 5-7pm cst
7:00-9:00 pm cst  Hanging with the ladies for a discussion and Ice Cream Social at Good Gyrrl Studio
1200 W. 35th Street Lower Level Free!!! All Are Welcomed....

Celebrate The Life of International AIDS Activist Hydeia Broadbent

Today is National Women and Girls HIV/AIDS Awareness Day. This is a time to educate and reflect on the AIDS pandemic and it’s impact on women and girls. Every 35 minutes, a woman tests positive for HIV in the United States. African-American women are the hardest hit by HIV/AIDS, comprising 72% of all new cases of HIV. And sadly, AIDS is the number one killer of African-American women between the ages of 25-34.

Since the beginning of the AIDS pandemic, there has been a steady rise in the newly diagnosed cases of HIV in women. Historically, in the United States women with HIV/AIDS have been underserved. In the early days of the pandemic, women were not admitted into hospital, AIDS wards, nor were studies designed to include them. In fact, the first natural history study looking at disease progression in women and HIV is only fifteen years old. And the first medicine study specifically examining issues related to women only began in 2008. The conference highlighted in this video was in 1996, fifteen years into the pandemic.




When I did this news report on women and AIDS fifteen years ago, I had been diagnosed with HIV for almost ten years. While African-American women were identifying with my two-month-old story in Essence Magazine across this country, AIDS was ravishing my body. Staring death in the face, I felt a sense of urgency about the work of HIV/AIDS. If I could prevent one woman from experiencing my pain, then my living was not in vain. Ironically, a little girl named Hydeia Broadbent was also fighting for her life and the lives of others. Like me, she wanted her young life to have purpose. Today, I celebrate the life and work of that incredible woman.

 Hydeia Broadbent stole my heart from the very first day. I remember it clearly, I was sitting in my living room and this beautiful African-American girl became the highlight of a rather boring ABC’s 20/20. Everything stopped in my house as I watched this 7-year-old girl with wisdom beyond her years. Starting her activism at age 6, she is by far the youngest AIDS activist to date (Ryan White was 11 when he emerged on the scene). I was struck by both her ability to grasp the magnitude of her illness, as well as her willingness to challenge stigma and shame around this disease. While she was optimistic, she was not in denial. Hydeia, like many of us, had two choices: live until you die or stop living while you die. She chose to live!

Hydeia took life by the horn and never slowed down. Many of us watched with mixed emotions when she married her best friend. In retrospect, I wonder if some of the discomfort was because she was so young, or because her best friend was a little white boy. My critique of it all was informed by my own journey. I had married my ex-husband prematurely because of AIDS: That was her point too. I may not live to marry at an appropriate age, so I will do it now while I have a chance. Live! Live! Live! was the banner cry then. I was glued to the television as they told her story.


 The Early Years 
Hydeia was born to a drug-addicted mother and abandoned at the University Medical Center of Southern Nevada in Las Vegas. She was then placed in Child Haven, a county-run children's facility. At six weeks old, she was placed in the home of Patricia and Loren Broadbent. They had served as foster parents for numerous children, including other "drug babies" like Hydeia. When Hydeia came to the Broadbents she weighed less than six pounds and was dressed in doll's clothes because she was so small. The Broadbents took care of Hydeia until it was time to take her to an adoption fair with the hope of placing her with a permanent family. Hydiea’s race became a hindrance to her adoption and finally, the Broadbents adopted Hydeia themselves. From the beginning, Hydeia had problems eating and often experienced crying fits, but the Broadbents did not find her problems unusual for a child born to a drug-addicted mother. As a baby, Hydeia was chronically ill, more so than any other foster child the Broadbents had experienced. She caught the chicken pox several times, had numerous respiratory infections and seemed to catch any cold with which she came into contact. She even became very sick from regular childhood immunizations. It was not until she was three years old that the Broadbents finally understood the cause of her chronic illnesses.

On New Year's Day in 1988, the Broadbents heard a news story about a child who was believed to be the first Acquired Immune Deficiency Syndrome (AIDS) baby in Las Vegas. They did not think much about the story until they learned four months later that this child shared a biological mother with Hydeia. Upon hearing the news, all of the Broadbents were tested, but only Hydeia was diagnosed as having the Human Immunodeficiency Virus (HIV) that causes AIDS. At that time, very little was known about AIDS in general and pediatric HIV/AIDS was almost unheard of. The Broadbents spoke with their family doctor as well as the Centers for Disease Control and were told that there were no treatments for Hydeia. The only AIDS drug at that time, AZT, was not yet available for children. The prognosis for Hydeia was that she might live to the age of five. Eventually she was referred to the National Institutes of Health (NIH) where she began an HIV drug study. Hydeia’s drug therapy plan consisted of recombinant, CD4 and ddI. She was so sick all the time that the side effects of the medication seemed normal. Hydeia, said, “I didn’t know anything different. Normal to me was being sick.”

Hydeia's Activism

 Hydeia began speaking publicly about the disease while assisting her mother's activism, but eventually she overshadowed her own mother with her effective speaking style. Soon, Patricia Broadbent began letting Hydeia speak for herself. Her talents were recognized by a social worker at NIH who cast Hydeia in a pediatric AIDS educational video called "I Need a Friend." The video, Fearless, was seen by other AIDS activists who were moved by Hydeia's powerful message and her delivery. She soon began to participate in press conferences with Elizabeth Glaser, a co-founder of the Pediatric AIDS Foundation. "She really has an inner sense of the impact of her disease, and she's able to relay that message to others," Dr. Philip Pizzo told People magazine. By age 12 she was appearing on national programs including Oprah, 20/20, Good Morning America and “A Conversation with Magic Johnson.” Over the next 10 years Hydeia became a notable featured speaker and guest panelist at some of America’s most respected educational institutions: Duke University, Clark Atlanta University, UCLA, USC and Howard University, as well as the Essence Music Festival and Bishop TD Jakes Aids Rally. In 2006, Hydeia was the keynote speaker at the International AIDS Conference in Toronto, Canada.

Her Life 

 Hydeia went to kindergarten like every typical girl her age. However, stigma and myths around HIV/AIDS took center stage. One day she sneezed and her teacher sprayed bleach on her desk and it hit Hydeia in the face. Hydeia explained to her teacher that the cartilage in her nose was basically gone and she often had sinus infections that caused a lot of mucus. When she sneezed, she said, “Boogies come out of my nose.” Later in the week, while her mother was doing the laundry Hydeia reacted to the smell of the bleach telling her mother that “bleach burns.” Patricia marched straight to school and asked the teacher to show her the finger that she used to spray the bleach. She grabbed her finger and told her, “If you ever spray bleach on my daughter again, I will tear this finger off!” After that incident, Hydeia was removed from school and began home schooling. She admits that home schooling was isolating affecting her socialization skills.

By the time she went to regular school again, for part of 7th and 8th grades, she was behind most kids her age academically. Her senior year, she was determined to be a normal teenage girl. She wanted to go to her prom. High School was difficult for her and admits that she was behind academically and socially. Hydeia had a difficult time adjusting. She didn't make friends easily and girls were catty with her. Ironically they saw her as a child star and treated her as if she believed that she was better than them. She started dating in her teen years and admits that she has had a rocky time of it. Her first boyfriend was great. But his parents were not thrilled about their son dating Hydeia. She says, “I think more than anything, they were just concerned about their son. Her dating and sex life took center stage. Should she or shouldn't she date. After her first boyfriend, she met the “Bad Boy.” The relationship was rocky almost from day one. Hydeia believe that the rumor mill and stigma made “him ashamed of me.” As with most “Bad Boy” relationships, it took time to make the final break. In between the break ups, there was much drama, including Hydeia breaking his car window. Go ahead, Laugh Out Loud. We have all been there or close to it. She is currently in a committed relationship with a guy she absolutely cares about. While she admits that she is not a virgin, she has taken a vow of abstinence until she gets married. “I tell people all the time, “Being HIV positive, don’t mean that his penis will fall off or that your vagina is sown up. Sex with a condom is safe.”

All Grown Up 

 At 25, Hydeia spends her time trying to spread the message about HIV/AIDS awareness and prevention by promoting safe sex and knowing your HIV/AIDS status. She says, “People think because I was born with it my story does not apply to them. Well this same disease I am living with is the same disease you can get if you don’t practice safe sex or know your sex partner’s status, so use what I have been through as a warning of what you don’t want to go through!” She admits that her work is difficult. AIDS is no longer a sexy topic and speaking is her primary source of income. She and Patricia Broadbent have had a rocky mother daughter relationship. Hydeia has been taking care of herself since she was 17 years old. Like with most child stars, by the time she was on her own most of her money was gone. She says, ”I believe they didn't save my money from speaking because they didn't think I was going to live.” She attended college for two years and is planning on returning. While she will always be an AIDS activist, she is looking beyond the speaking circuit. She loves young people and is trying to find her niche. While her health is stable, like most people with advanced AIDS, she still struggles. This means a heavy pill load and chronic medical issues. She understands that she has a special gift, that God is using her to reach young people. She wants them to “take what I am going through as a warning of what not to go through.”

 Hydeia’s Credits


 Since 1996, Hydeia has been featured in some of today’s most prominent publications and television programs that include: Essence, Ebony, New York Times, POZ, Seventeen, Heart & Soul, Nickelodeon, MTV and BET. Hydeia has also been a part of some of America’s top talk radio programs including the Russ Parr Morning Show, Tom Joyner Morning Show and also was a part of one of the first satellite radio programs dealing with HIV/AIDS. Hydeia received the distinguished Essence Award and the American Red Cross Spirit Award. Ebony named Hydeia as one of the Most Influential African Americans 2008.

www.facebook.com/HydeiaBroadbent
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In honor of Hydeia Broadbent, I am proud to announce the Hydeia AIDS Awarness Bracelet.

I teamed with Hydeia to design this limited edition bracelet. Soon to be 26 years of age, Hydeia continues to travel world-wide educating about HIV/AIDS. In her honor, their are 52 limited edition bracelets handcrafted by Rae Lewis-Thornton. Twenty-six bracelets for the years God has blessed Hydeia with life and twenty-six for the years Hydeia has blessed us with her energy, compassion and wonderful spirit. Half of the proceeds from this bracelet will go directly to Hydeia and RLT Collection/Rae Lewis-Thornton will underwrite the cost.

www.rltcollection.com

Welcome to a Diva Living With AIDS Blog

Welcome to my blog, Diva Living With AIDS. As the first African-American woman with AIDS to tell my story on the cover of a national publication, I have spent the last sixteen years sharing my life, style, hopes, dreams and disappointments across the United States and even abroad. I never wanted to be a public person. I simply wanted to help bring about change.

As a young woman, I designed a wonderful plan for my life and by the time I was 23, I was half way there. As a national political organizer, with eyes on the White House, I served as the National Youth Director for Rev. Jesse L. Jackson's 1984 and 1988 Presidential Campaigns. I sat in strategy meetings with great minds such as, Alexis Herman, Secretary of Labor and Dorothy Height, the founder of the National Council of Negro Women. My plan was shaping up and I knew that this steady course would, sooner or later, guarantee me a position on a presidential campaign that was promised to win. And if I were smart enough and driven enough, which I was, this direction would guarantee me a position as, White House Staff.

During this same period as an up and coming political operative in Washington, HIV was also emerging on the scene. This mysterious virus literally scared the mess out of people. So much so, that once people discovered HIV was blood born, the number of blood donations dropped drastically. When I heard the nonsense, I thought it was crazy! People actually believed that they could contract HIV, if they donated blood. In my attempt to combat the madness I organized a blood drive in the winter of 1986. The previous year, they had just patented the HIV antibody test and all donated blood was now being tested for HIV.

A few months after the blood drive, I received a letter from the American Red Cross. I assumed it was a thank you and laid it on my counter. Later that evening, I nonchalantly opened the later telling me that something was wrong with the blood that I had donated. The next morning I went to the Red Cross and they told me I was HIV positive. I didn't know on that day, but my whole world changed right before my eyes. I was so naive that day, I completed a 12-hour workday. The years following my diagnosis, I peacefully coexisted with HIV. It didn't bother me and I didn't bother it. I wasn’t sick so I stayed my course. My plan was looking more successful each day. Little did I know, it was inevitable, I would make a clinical transition to AIDS.

AIDS disrupted my world and shattered my dreams into a million little pieces, but God picked up those pieces and reshaped the direction of my life. After living in shame and secret with HIV for almost seven years, I couldn't continue to carry a weight so heavy. I let go! I started to tell my friends and political family that I had AIDS. It felt like tons of bricks had been lifted off my shoulders. I got a new walk and a new talk. Things were looking up, but AIDS was unkind and it started to ravage my body and spirit. I went from 3 pills a day to 23 pills. I went from a size 12 to a size 6 in six months. I started to have back-to-back yeast infections and 21-day menstrual cycles. I became clinically depressed, and cried all day, every day. Things were looking gloomy, but God’s plan never fails. Within a year I started speaking locally about my life living with AIDS and six months after that, Susan Taylor asked me to grace the cover of Essence Magazine in a cover story Facing AIDS.

That Essence article placed me on a course of no return and pushed me into the national arena, as one of the most visible African-American AIDS activist in the United States. I was never much of a public speaker, but I had lots to say. I earned the reputation of being raw, candid, forthright and honest. The fact that I met none of the stereotypes of people living with HIV was appealing to both the masses and the media. I used that fact to affectively to challenge stereotypes and myths surrounding HIV/AIDS.

AIDS has been the catalyst that opened doors and drew people to me. This Blog is an extension of who I am and what I stand for. It is just another vehicle to give voice to my ministry.

A Diva Living With AIDS blog will be true to the essence of my work and life as a woman. I will educate and inform through my eyes and life. Like in the past, I will address a gamut of issues including: HIV/AIDS, childhood sexual abuse, dating, overall health, politics, and of course beauty, Diva style. I am not limiting myself to one genre; the sky is the limit. I made a promise sixteen years ago that I would be a voice for the voiceless, face for the faceless, bring hope to the hopeless and tear down barriers and stand with DIGNITY, as a Woman living with AIDS. This Blog is another way for me to keep this promise. I am not a professional writer, just a Diva Living with AIDS and having her say.

So SUBSCRIBE, leave comments, and enjoy.