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Marcya Owens

Marcya Owens  

About Marcya Owens

Personal Bio

Tell us a little about yourself.

I live within the metropolitan St. Louis area, with my husband Roy, who is in the Army National Guard, active duty. My daughter, Mariama, is 11, and my son, Omavi, is six years old and three quarters, as he would say. I am in Liberty University graduate school, getting my master's degree in marriage and family therapy. I got my undergraduate degree in psychology from Clark Atlanta University. I grew up in the Seventh Day Adventist Church.

What did you want to be when you were a kid?

When I was 13 years old, I wanted to become a Ph.D. in pediatric clinical psychology. In addition to my master's, I'm now toying with the idea of getting my doctorate in public health education, with an emphasis on immunology and infectious diseases, because my view has changed since I've been HIV positive.

I gave up on my dream of going to school and developing myself as a psychologist or a therapist when I found out I was HIV positive. Roy kept nagging me, in a gentle way, until I finally said, "Wait a minute, I'm allowing this HIV to control me." When I do public speaking as a person with HIV, I talk about not losing sight of your dream.

What kinds of work have you done?

Everything from strawberry picking for Smuckers to working in a laundry and as a waitress. I owned a hosiery business when I was 16. I worked in a group home for mentally disabled individuals and a mental health hospital. I was the co-founder and executive director of an AIDS service organization. I've worked as a professional speaker, treatment advocate and educator, and pharmaceutical contractor. But the biggest job is being a mom.

What work did your parents do?

All I know about my father is that he was an airplane mechanic for the Air Force. My mother started off as an LPN [licensed practical nurse]. She's driven too -- got a bachelor's in nursing, later got a master's in drug rehab counseling. Today she's working in a tuberculosis clinic in Atlanta, with refugees. She's retired -- and working full time at the age of 67.

Who are the most influential people in your life?

Two AIDS activists, Debbie Thomas-Bryan, who died in 1999, and Kiyoshi Kuromiya, who died in 2000.

But I admire lots of people who are alive! Michelle Lopez and Jane Fowler, two inspiring women with AIDS; Dawn Averett, who founded The Well Project, and Rebecca Denison, who founded WORLD [Women Organized to Respond to Life-threatening Diseases]. And my grandfather, because he was Dad to me. He was a minister for 70 years and a business owner.

Then there are Jeff Graham, former executive director of AIDS Survival Project, now a program manager at Advocacy, and Thomas Milner, my former boss at Dupont Pharmaceuticals Company, who was a mentor and a great ally to the HIV community. He took an interest in me, and oftentimes was my surrogate father. He is now retired. My mother, because she taught me how to go after what you want and how to speak publicly. My husband, who believes in me, even when I don't.

What do you like to do in your spare time?

I love gardening because it's relaxing. I love the outdoors and doing things with my kids -- camping, hiking. Being close to mountains or oceans or both. That is my heaven on earth.

HIV Diagnosis

How did you find out you were HIV positive?

I found out I was HIV positive in 1994 because I got pregnant. I was in college, doing well. I practiced safe-sex methods 99 percent of the time. I became pregnant in my junior year, when I was 23. After deciding to keep the baby, I went to a community hospital and was given an HIV test. Nearly six weeks after learning I was pregnant, I also learned that I was HIV positive.

What were your feelings when you were first diagnosed?

From the beginning, I knew HIV was a virus that affects the immune system, but I also knew that if you take care of your immune system it did not have to be a life-threatening illness. I knew that because my mom has been working in the field since 1986. So I wasn't overly concerned.

I asked what the risk was for my daughter. Once they told me it was not that high, my attitude was, "I'm gonna show the world how to live with HIV." This was even before protocol AIDS Clinical Trials Group (ACTG) 076 [reducing mother-to-child transmission by giving the mother AZT (zidovudine, Retrovir) during pregnancy and childbirth, then giving the newborn AZT]. I've had two HIV-negative babies, my daughter pre-076 and my son post-076. If I hadn't gotten pregnant, though, I would never have been diagnosed so early. I feel lucky that I did find out.

What do you suggest women with HIV do if they want to have a baby?

First, have a serious conversation with their partner. Second, talk with their primary doctor and their gynecologist. The doctor will want to see where they are with their viral load and CD4 count and check to see if the drugs they're on are appropriate, or if changes need to be made. It needs to be a group decision. It takes a village to raise a child -- and to conceive a child too.

How does being pregnant complicate a diagnosis?

I had to focus on my baby. I didn't have time to think much of myself. When my daughter was born I named her Mariama, which means "gift of God" in Swahili. We were blessed that she did not become infected. The only preventive method at the time was good prenatal care. They were just starting to learn about ACTG 076 and other ways to decrease transmission of HIV, so that was not available to me. I was in labor for three and a half days. My water was broken for well over four hours, and her head sat in my birth canal for three hours. If that happened today they would probably give me an emergency C-section. As it is, she is a miracle.

How did the precautions you took during your second pregnancy with Omavi differ from those five years earlier?

With my first pregnancy we knew very little about prevention of perinatal transmission. With my second pregnancy I knew I would take a drug cocktail and that I also had the choice of a C-section. I've always lived a healthy lifestyle, so no major changes were required. I did have more doctor visits with an obstetrician.

I had a severe adverse reaction to one of my drugs during the second trimester of my second pregnancy, which caused my liver enzymes to elevate 10 times higher than normal.

There was no harm to my son. In my third trimester, I went into labor six weeks early and was placed on bed rest with medication to stop the contractions. This worked for two weeks. My water broke with a slow leak on Mother's Day, four weeks before my due date. Omavi was born on Mother's Day, weighing seven pounds, three ounces.

Do your kids know that you're positive?

Yes. We talk about it at home, but I had to tell Mariama not to talk about it at school. The school is great, but it's a Christian private school, so I didn't want her to have to deal with stuff with the other kids. Though she and my mother did bring the book My Grandmother Has AIDS to school and read it to the class, and we got the school to give a copy to every kid.

What conditions in your life put you at risk for getting infected?

One: having been sexually assaulted when I was a child. Two: not having something out there to support me, like a child advocacy program. Not having a safe, supportive environment where I could talk about what had happened to me and get help. I didn't feel I could talk to my mom, and I did not have a father. We were moving every three years, so I never got a chance to bond with people and never felt comfortable talking about stuff like that.

I was infected because I was irresponsible. I was promiscuous and did not always use condoms. It wasn't Mariama's father who infected me -- he's HIV negative.

What advice would you give people who have just found out they are positive?

It's not the end of the world. It's the beginning of a brand-new world. There'll be good days and bad. But it's nothing they can't handle because if they've gotten through their lives so far, they've had those bad days already. All they have to do is dig back there, find the strength to meet the bad days and celebrate the good days. And educate, educate, educate: themselves, their families and others.

How has HIV changed you?

I've had it so long now, it's hard to say. Everything in my life has become so intertwined with HIV, like a rope, it's hard to pull a piece free from the rest.

I've had the opportunity to get to know people who may never have entered my life. I would never have been blessed by knowing them. HIV brings so many people from different walks of life together. It's incredible to go to conferences, sit back and look at everyone -- from the homeless all the way to people living in mansions -- united for one purpose: prevention of HIV and AIDS.

To me, that's amazing. I don't know too many things that could do that, considering all the hate and prejudice in this world, from income levels to gender and sexual orientation. We may not always agree on how to prevent and treat HIV -- condoms or abstinence, for example -- but we're all united that we should be preventing and treating.

African-American Identity and HIV

When did you first realize that you were African American?

When I was about 13 years old I moved to Ohio. I was told I was an Oreo cookie -- black on the outside and white on the inside -- because I didn't talk black. We as a people can be cruel to one another. I try not to look at people as a race, but as individuals, because of the way I was treated.

To what extent have you experienced racism in your life? How have you learned to deal with it?

I've found racism everywhere. It's not dead in the Midwest. I have been profiled in so many stores, followed around, asked to show ID, where other people are not. It is pitiful. I watch a whole lot of white people in Wal-Mart: they pass through, run their debit cards in and out. If I'm buying a suitcase, security has to check to make sure I didn't stuff something in to steal it, when other people buy the same thing without being checked.

I'm not the black stereotype that racist people think of. Unfortunately, the media tries to show that stereotypical image more than the real African American.

What do you think is the biggest challenge facing African Americans today in terms of HIV?

African Americans are ignorant. They don't educate themselves about how you can or can't get it. Also, you have to educate yourself on your treatment, not leave it solely to your doctor. If your doctor doesn't know your lifestyle, he or she may put you on pills you have to take twice a day. If you're a person who can only remember to take them once a day, you miss your meds. Some of it is ignorance, some of it is stupidity.

How does stupidity play a role?

Stupidity is when you know how to get HIV and choose not to do anything about it. Today everyone knows about it. We go to the schools and educate. You watch BET [Black Entertainment Television], you ride a bus, take the subway, there's signs out there. At least once a year, it makes the headline news, on December 1 [World AIDS Day]. There's so much information out there, it's hard not to know.

What HIV risk factors are of special concern to African Americans?

Lifestyle. We often use alternative forms of treatment to deal with emotional issues. Those non-legal forms, even prescription drugs. Whenever you use a substance that alters your thinking, you put yourself at risk -- you do stupid stuff under the influence.

Another risk factor is the churches. They have to stop dealing with sexual orientation and lifestyle issues and start dealing with choices. There are good and bad choices. Something we should tell all people is "If there is any possibility of infection, use a condom until you can get tested, and confirm the test is negative after six months or more because it could take that long for HIV to show up."

Another thing I tell people is, "If we don't have the courage to ask our partners about their past drug or sexual experiences, or even if they were born with HIV, we shouldn't be getting in bed or sharing needles with them."

What are some of the main myths about HIV that you hear in your community?

You can get it from a water fountain, from swimming in the pool, from a mosquito.

Are there any specific aspects of African-American culture or identity that give you strength?

The spirituality that I grew up with. It was spirituality that kept us alive when we came over on those boats and kept us alive until freedom came. And it's spirituality that keeps me going today.

Also, people of African descent are determined. They do not look for a handout. They will work umpteen million jobs and put in 16 hours a day to support their families. I am on disability, but that does not mean I don't have a full-time job.

African Americans are family-oriented. My family has rallied around me in difficult times. I get words of encouragement in the mail from my uncles saying, "Hang in there. Keep on praying."

What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?

That all African Americans have access to health care. Many of us don't seek care early enough to avoid getting sick and do not have the financial income for health care once we are. We may have had it before HIV, but not after. Therefore, many of us get left to state health care. I hate to say this, but the average system treats you like a number. In big cities like New York, Chicago and Atlanta, you can choose which state provider you go to. But often these decisions aren't made that way -- they are based on whether people can afford transportation. People think, "If this is the closest place, I'll go there." I think everybody should get Magic Johnson's health care. In Canada, from what I understand, everybody gets the same health care, and we should get it here too.

Do you think the Bush Administration is doing enough for the black epidemic?

No! They cut back on Medicaid nationally. Yes, they gave prescription plans, but if you look close enough at Medicare, Part D, you realize they're not trying to give you medication. You have to jump over so many hurdles, have so much money. There are times when you can get it and times when you can't. Then you have to spend out of your pocket to get it again, and it cannot be supplemented with ADAP [AIDS Drug Assistance Programs]. I thank God I'm not in that predicament, but it's ridiculous that most African Americans are.

How would you grade Bush's performance?

We don't get good support from the government. I cannot say anything directly about Bush, because I'm an Army wife, but I'll say something instead about the governor of Missouri. He knocked out a lot of resources for people with disabilities. Then he goes back and says, "I want to fight for these people, and make sure they get adequate health care." They're discriminating against people who can't afford health care. Even if you're making $50,000 a year, about $4,000 a month, and you live in New York City and you're paying most of it to rent, you're poor. You can't pay up to $5,000 a month for your prescriptions, a real amount I had to pay.

Do you consider yourself an AIDS activist? What does activism mean to you?

I've always been an activist. In high school in Ohio, a group of us junior and senior girls started calling ourselves the BRONX Girls. We were like a sorority, but one of our goals was to look out for and support the underdogs. Many of us in that group had experienced negative treatment from other classmates. We became one of the most popular groups on campus. When I was in college I was on the student government. That was before HIV.

Advocating for yourself could simply be going to your doctor and saying, "I have thrush, and it keeps on coming back. I don't want to become resistant to the medication for it, so can we look at this more aggressively and find out what's causing it?" Advocating can also be going to your congressperson and saying, "Listen, we need to support this program because it affects the lives of people living with HIV."

How did you get involved with AIDS activism?

I first came into contact with the AIDS Survival Project [the largest treatment resource center in the Southeast] in Atlanta in 1995. I attended Operation: Survive! [now the THRIVE! weekend]. I was so impressed by the HIV-positive presenters that I committed to being just like them. In 1996 I developed ROSE, my own nonprofit AIDS service organization. The program had some similarities to AIDS Survival Project but was targeted to the African-American family. I went to Jeff Graham, AIDS Survival Project's executive director, for tips on how to develop my organization. In 1997 I was at another organization, AIDS Atlanta, for a community forum on HIV names reporting, and my outspokenness got me invited to join AIDS Survival Project's advocacy committee.

I was bold enough to request a position at AIDS Survival Project as a community-outreach coordinator. By June 2000 I had been promoted to program manager for treatment education.

Do you participate in an AIDS service organization [ASO] now?

I'm not directly involved with any one particular ASO at this time. But I am involved with the CAB [Community Advisory Board], on the planning council in this area. Overall I've got about nine years of service on planning councils, such as Ryan White, and about eight years of community participation and advisory boards. I still speak at different ASOs.

Have these organizations been helpful in improving your health?

Yes. This year our lives were so stressful dealing with other family issues, I almost forgot about Christmas. We did not have the money for groceries or gifts for our children. It was an ASO that connected me with a direct source of help, which I should have gone to in the first place, but was too ashamed. It was December 23 and I drove into St. Louis and got loaded up with not just gifts for my children, but little gifts for guests I invited to my home.

HIV, Health Care and Treatment

What HIV medications have you been on?

Can we just go through my chart?

Post-Diagnosis Medical Chart:

Medications, Side Effects and Illnesses (chronologically)

Alternative Medications/Therapies

Except for the structured treatment interruption, I tried no alternate therapies; supplements taken included calcium, goldenseal, magnesium, milk thistle, multivitamins, optimune and vitamin B-complex.

How do you feel about taking your medications?

I never have liked taking medications, because I had bad experiences. I didn't like taking aspirin when I had menstrual cramps. Even my experience with the [birth control] pill was bad. I have chronic back pain, and the painkillers cause chronic constipation. The story only gets worse when I talk about HAART [highly active antiretroviral therapy]. But it's saved more lives than it's destroyed. I am just one in a billion who cannot tolerate medications. Overall, I think people are tolerating the meds better now, and they fit in better to people's lifestyles.

I've been positive 12 years and I've gone from burying at least a few friends each year, to burying a dozen, to not burying anybody. We've shut down the infectious disease units for HIV-positive babies, because there is no use for them. We have improved so much because of medicine, good health care and research. We're finding new things every day. So I can't talk bad about the medications that I personally don't get on with. I advocate them. I do a lot of presentations on adhering to medications, and give advice if people have trouble communicating with their doctors.

Are you on medication now?

No, I've always taken herbs, vitamins and minerals -- that's my total antiretroviral treatment at the present time. Right now, it's effective. I don't know how long it's gonna last, but my viral load went down by two-thirds just with my diet and supplements. My CD4 count is on the decline (303, 18 percent) and my viral load is on the incline (123,000). I am now looking at clinical trials as well as non-clinical trials as a new course of treatment, although I am very frightened to start again. I have had many life-threatening side effects to past medications and I am concerned about making the right choice for a new course of HAART.

How did you choose your doctor?

When I was in Atlanta I could choose doctors easily because I knew practically everybody in the network -- I served on three different community advisory boards and the ADAP. But when I moved to St Louis, it was hard. When I found I made a mistake choosing a doctor, I fired him. Then I asked infectious disease health care providers and people in research. I asked patients, people who work at ASOs. I polled every one of them, and when I saw a name that got good referrals at least three times, I put it down on my list and interviewed the person. If I did not like the way the interview went, I did not go back.

Do you think you are getting the best care possible?

I couldn't be getting better health care now. The biggest complaint I've had with it is that I've had recurring oral thrush. She told me it's because of my dental hygiene. I started brushing and flossing my teeth four times a day. I looked on the Internet and found that it's a side effect of chronic constipation. That's not the first thing that popped into her mind. I can't fault her though, because it's something I could have missed if I were in her shoes.

Is your doctor African American?

No, she is Caucasian. She's a nurse practitioner. She taught me that a health-care provider does not have to be an M.D. They can give you the same quality of care, although there are still some occasions when you have to be referred to a medical doctor.

Do you think an African-American doctor can understand and treat African- American patients better?

Something a pharmaceutical representative told me when I was looking for a doctor was, "There's an African-American doctor, but he's more interested in how well his pocketbook is padded than how well his patients are." If my insurance company had a set limit on how much they were gonna pay, and it did not meet what he wanted, he wasn't gonna give me the best care. What makes the doctor is not their color, but the choices they're making and how committed they are to the patient.

Do you feel that your health-care provider treats you like a partner?

Yes. She and I sat down, and I told her my issues with health care, and she told me her policy. We agreed to sometimes disagree. She is more aggressive in getting me health care than any doctor I've ever had. I've had some other good doctors, but she is Class A all the way.

Do you have a particular health regimen that helps you stay well?

Whether I'm taking meds or not, I'm a vegetarian. I try and drink at least four bottles of water a day. When I'm on medication, I go to a credible source to find out the drug to drug, or drug to herb, interaction. For example, grapefruit can cross out certain antiretrovirals.

Do you have any other illnesses that have complicated your health and your treatment?

I have herpes, but I've experienced hardly any problems from that.

Disclosure, Relationships and Sex

How have your relationships with family and friends changed since you were diagnosed?

My family has been more supportive than I could have asked for. One time I was headed to Atlanta from Birmingham, Ala., a two-hour drive, to a CAB meeting. My car broke down two exits from my uncle's house. He not only had the car towed to their house, housed and fed me while I was there, but drove me the two hours back home . Then they turned around and drove two hours back to Birmingham and went to work that night. All three of my uncles, all my mom's brothers, organized as a unified front and said, "This is my sister's baby, I'm gonna take care of her as if she's my own child." I've got an incredible family!

How do you decide whether or not to disclose your HIV status to someone?

I disclose when someone needs to know, either because next week they're gonna see me on TV, or their child plays with my child and they have sleepovers. I want them to know what risks they are -- or, rather, are not -- being exposed to.

But I'm still afraid every time I tell. Even when I do presentations and interviews, there's a certain level of fear. So I say, do it at your own pace. Don't feel pressured that you have to tell everybody, because it's not everybody's business. It's your life.

What is the best response you have ever gotten from telling someone? The worst?

The best was from a group who were opposed to HIV being the cause of AIDS. After hearing my story, they said they were going to get tested themselves. Now every time I see them, they make a point to ask me how I'm doing, how my children and husband are doing. They did a complete 180.

The worst was with a family member on my husband's side of the family. She found out that I was HIV positive, and basically had no more contact with us. But I believe one day she'll probably come around.

Where do you go for support?

The first place is to my higher power, God, and then to my husband. I have also accessed support groups, not just within the HIV arena.

Your husband used to be a parish minister. Did you feel accepted in the church as his wife -- by bringing a child into the marriage and having HIV?

I sometimes believe that he was denied the opportunity to do any real work in the ministry because of me. The church did not look fondly on either situation, and at times I wonder if it's because most people have a hard time having a first lady of the church who is HIV positive. I know other ministers who married women with children born out of wedlock, but I know of none who married women who also had HIV. Roy says that he's respected by his peers for making the choice that he did.

If you don't mind me asking, how has your sex life changed since you became HIV positive?

Before I was diagnosed with HIV, I was very promiscuous, basically addicted to sex. When some people would go look for weed, cocaine or alcohol, I had a sex partner to call up. They say that's typical for survivors of rape and sexual assault. I used guys like some guys use women: They were nothing for me but a quick fix. When I found out that I had HIV and was pregnant, it changed 100 percent. The word "monogamy" had real meaning. So much so that when my husband and I met, I told him I couldn't look at him preach a sermon in church if I was having sex with him before marriage. He and I dated for two years and never had intercourse until we got married. I'm glad that we didn't, because we were able to develop a friendship. If we had consummated our relationship with sex, we wouldn't have been able to make it through the hard times. Showing that you love me -- having dinner prepared, the house fixed up, with candles lit -- I think that's more touching than a commercial break of sex.

Wishes and Adventures

If you were granted one wish, what would it be?

To have my family whole again. My daughter is in a mental health care facility.

What movies and TV shows have had a big influence on you?

I love The Sound of Music because it shows you don't have to do what society's telling you to. It doesn't mean it's gonna be easy.

I love investigative shows, like House, CSI, animal shows, medical mysteries, ER. I'm a person who's constantly seeking to educate myself. But even things that make me laugh teach me a life lesson: to relax and enjoy.

Is there anything else you'd like The Body's readers to know about you?

I'm tenacious and driven, but I'm also working on my listening skills. I appreciated the emails I got from The Body's readers after they read my profile from 2001, especially when I was really sick -- my husband set up my computer so I could read them in bed. They kept me going on those dark days where giving up would have been easier than to keep on pushing.

Click here to e-mail Marcya Owens.


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