A Mother's Heartbreaking Story
About Pediatric AIDS
Posted: 03/23/2012My name is Suzan. I'm an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, where I advocate for people to join the fight of mothers around the world to protect their children from HIV. I'm also the author of The Silence of Mercy Bleu -- a story about a young woman who grows up harboring the secret of AIDS.
When people ask me what propelled me to write a novel about HIV/AIDS, they're often surprised to learn that I am a 26-year survivor of the disease. But unlike my character, Mercy, who grows up with the disease and later strives to have a healthy baby, I didn't learn the truth until it was almost too late.
I met and married the love of my life in 1988, and a couple of years later we decided to start a family. In 1990, our wish came true and we welcomed a beautiful baby girl into our lives. In those early years, everything was perfect.
But then in 1996, shortly after the birth of our second child, something began to go terribly wrong. In the matter of a few months, both of our children became very sick.
Alee, our then 5 year-old daughter, began to rapidly lose weight. At the same time, our newborn baby, Mitch, had to be put on a respirator in the ICU, where he would spend weeks fighting a respiratory virus his young body couldn't fend off.
The doctors were candid -- things weren't looking good. There were numerous tests and long hospital stays, but still we had no answers. It was a parent's worst nightmare. We were losing both of our children and no one could tell us why.
I'll never forget the phone call that saved my children's lives. It was a new doctor. She was quick to the point. She said, "Something in your son's blood work warrants an AIDS test. I suggest your whole family be tested."
I was in complete shock. I just remember thinking, "I'm going to have to watch my children die." I didn't think I was strong enough to handle that.
We took our HIV tests, and tragically, our doctor was dead on. I tested positive for HIV. So did Alee and Mitch. We were very lucky in that my husband was negative.
Almost overnight, my family became just another face of AIDS.
It wasn't hard to trace where I'd contracted the virus. Before I'd met my husband, I'd been engaged to a young man who I was later told had died of cancer, but who I now believe died of AIDS. I had carried the virus for nearly 10 years without ever knowing it.
My husband and I nearly lost Alee and Mitchell that year, but 1996 -- the year we were diagnosed -- was also the same year that protease inhibitors became available. My husband and I would crush the blue pills into pudding, clap and cheer, and somehow our children would manage to swallow the brown, sticky mess.
Daily, we saw improvements. This new medicine, in combination with two others, literally brought our children back to us. It was and still is the most miraculous thing that I have ever witnessed.
People often ask me how HIV has changed me, and I almost want to say, "How has it not changed me?" To be completely honest, you can't go through what I've been through -- any life-threatening illness really -- and not come out a completely changed person. HIV is even more difficult because it's a disease that many people suffer with in silence, myself included, for many years.
There were so many things that my family and I had to work through to get to where we are today. HIV forced me to be a much braver, more open person, and I'm thankful for that.
It's never easy for me to share my story, but I think it's important for me -- especially as a mother -- to do so. Today, with medicines that drive the virus to undetectable levels, there is now more hope than ever of staying healthy and stopping HIV transmission. This means being able to protect your partner from the virus, and being able to have a child born free of HIV.
My husband and I were fortunate. We didn't lose our children. The same can't be said for families in other parts of the world, like Africa where our youngest son Yonas was born.
Every day around the world, one thousand mothers -- many of them unaware that they carry HIV-transmit the virus to their own babies in utero, during labor, or through breastfeeding. Without access to the right medicines, they are helpless to protect their own health and that of their babies. Being a mother with three children who are all positive, yet remarkably healthy, I can only imagine what that feels like.
The hardest part of my having HIV was never that I might die -- the hardest part was that I had given this terrible disease to my children. No mother should have to carry that burden. Not today, not ever. Especially when mother-to-child transmission of HIV is completely preventable. With preventative services, the chances of a mother passing the virus on to her children are extremely low -- less than 2 percent. Those are some pretty terrific odds.
We can stop mothers and their children from dying. Really, we can. I know because I've seen it with my own eyes, with my own family.
It's been 16 years now since my children's health was restored. I will get to see my children grow up, and I know that for a parent, there's no greater gift.
As an ambassador for the Elizabeth Glaser Pediatric AIDS Foundation, I get the privilege of joining in the fight to eliminate pediatric AIDS. The work done by the Foundation and its partners around the world is saving children's lives and sparing families unimaginable heartache.
The Foundation has made huge strides to help mothers like me, and lifesaving medicines are now reaching more people than ever. You can be a part of that progress.
Join the fight of mothers around the world, and help us get closer to a new generation born free of HIV.
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What's It Like to
Live With AIDS?
Three HIV-Positive Women
Share Their Stories
Meet Suzan Stirling:
“I want to see my children cured of HIV.”
Suzan Stirling is a 45-year-old mother, AIDS activist, and writer. Diagnosed with HIV at the age of 29, she lives in Kentucky with her husband, two biological children, and an adopted son from Ethiopia whose birth parents died from AIDS.
How did you find out that you were HIV-positive?
I’ll never forget that phone call. It came shortly after we brought our son home from the hospital. He’d been very sick and in and out of intensive care for months with a respiratory virus that his body wasn’t fending off. I was at my mother’s house when I got the call that literally saved his life. It was a new doctor. She was quick to the point. She said, ‘Something in your son’s blood work warrants an AIDS test. I suggest your whole family be tested.’ I just remember thinking, ‘I’m going to have to watch my children die.’ I didn’t think I was strong enough to handle that. That was sixteen years ago. I’d unknowingly contracted the virus in 1985 (before I’d met my husband) from a young man I’d been engaged to who I was told, years later, had died of cancer. Back then we didn’t even think that women or heterosexual men were at risk, but we know better now. At the time I was diagnosed, I’d carried the virus for nearly ten years without ever knowing it. I’ve lived with HIV for a total of twenty-six years now, more than half of my life.
How often do you visit a doctor?
I have a wonderful ID doctor who I see once every few months. Our visits run like clockwork. He accesses my health, orders the appropriate tests, and always asks me point blank, ‘How are you doing?’ My answer, I’m thankful to say is always, ‘I’m doing great.’ And I am. Amazingly, my viral load–– which is the amount of virus that can be detected in the blood––remains undetectable, and my CD-4 count (immune system count) is better than the average “healthy” person. I’m happy to say that all of my children are doing equally well. We’re very fortunate to have access to life saving treatment. I think it’s hard for people to even fathom that in other parts of the world, like Africa, where my adopted son is from, people are still dying every day from AIDS, a disease that’s now completely treatable.
What side effects do you experience from your medication?
In the early years, after my diagnosis, the medicines I took were very difficult and the side effects almost intolerable --s o much so that at one point I stopped taking them. I just couldn’t do it anymore. I thought, if this is how my life is going to be, I’d rather take my chances. They were making me that sick. Today, it’s a whole different story: due to some wonderful advances in medicine and an experienced clinician, my medicines are easy to take and I have no side effects from them. I take three pills in the evening and two in the AM. That’s it. Simple. I feel like I’m living the best years of my life, right now.
How has your diagnosis changed you?
I almost want to say, ‘How has it not changed me?’ because to be completely honest, you can’t go through what I’ve been through -- any life-threatening illness really -- be it cancer or what have you, and not come out a completely changed person. HIV is even more difficult because unlike cancer, it’s a disease that so many people suffer with in silence, myself included, for many years. I was so fearful of what people would think of me, or worse, that they’d be afraid of me. There were so many things that I had to work through to get to where I am today. HIV forced me to be a much braver, more open person, and I’m thankful for that.
How did your family and friends react to your diagnosis?
So much love. So much support … there isn’t a day that goes by that I’m not thankful for the family, friends and even total strangers who have built this palatial wall of support around my children and our family. They are the reason we’re healthy and whole today. They’re the reason we’re able to openly share our status and story with others.
How do those outside of your inner circle react when you disclose your diagnosis?
I remember my son needing a surgery years back, and my telling the doctor, ‘My son is HIV positive…’ thinking this would be a problem. She just looked at me and said, ‘Okay, that doesn’t change anything. I can help your son. I’m not worried about the HIV.’ This woman was a complete stranger. Moments like that you don’t forget.
I understand people’s fear of HIV (I used to be one of those people) and I also know that a little education goes a long way. I encourage people to ask me questions. We just need to open the lines of communication.
How has HIV affected your romantic relationships?
I’m glad that someone finally had the guts to ask this question because it’s a really important one that deserves an honest answer. We need to feel free to talk openly about (and this will make my teens cringe) sex and intimate relationships. Plus, I like talking about sex. I also enjoy the act of lovemaking very much and have been doing it on a regular basis for the last twenty-four years of my marriage … before and yes, after finding out that I had HIV. I can’t speak for everyone in a romantic relationship where one or both are positive, but for my husband and I, although we’ve had bumps and dips in our marriage like any couple, sex has never been one of them. Maybe that’s because we’d already been together for almost ten years before I was diagnosed, I don’t know, but what I do know is that people meet and fall in love every day. HIV isn’t going to stop that.
In fact, in my novel I’ve addressed the “sex” issue with what’s probably the first sex scene EVER written to involve a condom! Plus, with today's treatment the virus is suppressed to such low levels that it makes transmission highly unlikely. What I’m trying to say is we're not so different from everyone else. What I’m trying to say is that HIV doesn’t change that we’re still human. We still have desires, and a need to love and be loved. I used to tell my daughter when she first started dating that HIV would weed out the Mr. Wrongs, but wouldn’t matter to that special Mr. Right. It’s true. With the right person and knowledge as your ally, HIV won’t stop you from finding that special someone to share your life with.
Do people treat you differently because you have HIV? How does that feel?
No, I really don’t think so, only because I don’t act differently. I’ve got a pretty healthy attitude and after having lived with HIV for so many years, it’s like anything else¬–you grow with it, you become more comfortable, and I think that people pick up on that. I’m not worse for having HIV; if anything, I’m better for having survived it.
What is the hardest part of living with HIV?
A few years ago, I would have said not being able to talk about my disease openly. Today, the hardest part for me is feeling that I have a responsibility to talk about it openly. It’s not easy for me to share my story, there are some really painful moments I don’t like to re-live, but I’ll keep doing it because if it helps one person, then it’s worth it to me.
In which ways do you take a stand for those who have HIV or AIDS?
Over the years my family and I have had the opportunity to work with a number of amazing organizations including The National AIDS Memorial Grove, amfAR, and The Elizabeth Glaser Pediatric AIDS Foundation –– an organization dedicated to ending mother to infant transmission around the world. My goal is to facilitate HIV awareness and help end mother to infant transmission of HIV, a goal that’s been achieved here in the United States, and with support and necessary funding there’s no doubt in my mind, we’ll one day achieve those goals around the world. You can learn more about what I’m doing to help in the fight against HIV/AIDS by visiting my blog (http://www.redribbondiaries.blogspot.com/)
Your biggest fear:
My biggest fear used to be losing my children. I don’t fear that anymore. I know that they’ll live long, productive lives and that makes me happier than I can even express. My biggest worry today is health coverage. If I didn’t have health insurance, my medicine alone would cost over two thousand dollars a month. So, yes, my biggest fear is that something could happen, I could lose my health insurance, and then not be able to afford the medicine that keeps me healthy.
You’ve written a novel, The Silence of Mercy Bleu, which will be coming out in March 2012. The main character in the book has HIV -- can you tell us how closely your fictional story relates to your own personal story?
The Silence of Mercy Bleu was a story that had been stirring inside of me for years. I always knew that my first novel would be a story about a young woman with AIDS because it's a topic so close to my heart, but to answer your question: Is Mercy's story similar to my own? I'd like to say that my life and my experiences have been exciting enough to conjure up a "best-seller" but truth be told, probably not! What I am, though, is an avid observer; I love to watch and wonder. In actuality, the character of Mercy and her life experiences are vastly different from my own. I did that intentionally. But the feelings of isolation and shame -- the stigma that my character faces, those are very real things that many people living with the secret of HIV, myself included, have experienced first-hand.
What do you want most out of life?
What a great question. I want to make a difference. I want my life and my journey to have meant something. I want a lifetime of happiness. I want to love and be loved. I want to learn something new each day. I want to live. I want to see my children cured of HIV. I want… I guess I want a lot of things. But, if I had to boil it down to the one thing I want most, the thing I can’t live without, it would be a life filled with hope because with hope, I truly believe that all things become possible.
What's something you wish everyone knew about people who are living with AIDS?
I want them to know that HIV is just an illness. It doesn’t define who a person is, any more than a person who is diagnosed with cancer, or hepatitis, or diabetes. Get to know the person and then you’ll see beyond the stigma, beyond the disease. More than anything, people living with HIV need your compassion. Give us a hug. I can’t tell you how much that simple gesture means to a person living with HIV.
What would you tell women and girls who have just been diagnosed with HIV?
This is important. I would tell them that your life is not over. Don’t let HIV stop you from realizing your full potential. Be brave, be hopeful, be kind…and all good things will find you.
Anything else you want to share with our readers?
I just want to thank BettyConfidential and its editors for giving me this opportunity to share my story with readers on such an important day, World AIDS Day. And to all who read this: Be brave. Get tested. Knowing your status is your best defense against HIV/AIDS.
To learn about Suzan’s upcoming novel visit SuzanStirling.com.
Diana Denza is a regular contributor to BettyConfidential.