Niyongamba, A 20 year-old Rwandese woman

by HDN Key Correspondent Team- a statement from the 10th SWAA (Society for Women and AIDS in Africa) International Conference on AIDS, Kigali, Rwanda, 24-28 July 2005

MY NAME IS NIYONGAMBA MARCELLIN, AND I AM 20 YEARS OLD: WELCOME TO MY WORLD.

I am a Rwandese high school student. I am living with HIVAIDS. If you think living with the virus is challenging, you are not alone. My life is full of constant struggles.

You see, I thought accessing antiretroviral (ARVs) drugs would signal the end of my tough times, but I have realized that it was just the beginning of a long journey. I have had to concentrate on my studies even when I am at my lowest, when I have opportunistic infections. The process of schooling is a tough equation, add serious withdrawal effects from the medication and a hostile school environment and it adds up to a challenge.

I am very happy to be in school, but it is hard when other students do not understand why you have HIV. They think it is your fault and therefore mock you. They give us nicknames and laugh at us when we get some skin infections. They may even shun you, and that feels bad.

Stigma is bad in school, especially when you have to keep asking for permission to get medication. That means you miss out on important classes, yet you need medication to survive in a boarding school. It means that you stay healthy but miss some of the teaching.

The school administration does not always understand. Apart from needing time off to get medication and rest when side-effects have taken their toll, we need clean water and a special diet. Unclean water will accelerate opportunistic infections that may be water borne, while some food we take in school is not exactly good for our well-being.

I know that a proper balanced diet is good for my health because it will boost my immune system. With good food, I know I do not always have to take medication; therefore good food is important to me.

This is my daily situation: At times I have no money to see a doctor. It is good to have one doctor who monitors my situation, but it is not always easy to access such services with no money.

If this is tough, can you imagine a student in a boarding school, struggling to perform well in class, take care of their diet, deal with other students who are not always friendly, constantly leave school to get medication, and keep the sponsors of his or her education happy? On top of all that, there is a point to prove in society - that all students have a right to education.

I have a family - but I have friends who are orphans, head their households, and also have to go through school. At times money for school fees is not available, let alone money to pay bus fare to get medication. That is when we come together and encourage one another and hope that society will understand our plight.

I get my ARVs from TRAC [Treatment Research and AIDS Centre], that saves me a lot of trouble and I can concentrate on my studies and deal with the other challenges I face. I know there are other students who would like to access medication but have no chance. I hope the situation can improve and more students are able to access ARVs and other forms of care.

I am happy that I will be joining Don Bosco in Kibungo, one of the best schools in Rwanda. For me, it is such an achievement, and I hope to excel.

[The original statement has been slightly modified for editing purposes.]

Source: HDN Key Correspondent Team, email: correspondents@hdnet.org

Trinidad Immigrant, Lesbian, Mother of a Child with HIV

The highly energetic and talkative Michelle Lopez has a lot to say for herself as a mother, a lesbian, a trauma survivor, and a woman living with AIDS. Michelle emigrated from Trinidad at the age of sixteen, and has made her home in New York City ever since. Diagnosed with HIV after the birth of her second child, Ms. Lopez fought the loneliness and isolation that accompanied that diagnosis and became not only an advocate for herself and her daughter, but for other immigrants and women living with HIV. Empowered by her own boldness and desire to understand and survive HIV infection, she now advocates for some of the most vulnerable members of the HIV community, including undocumented HIV-positives.

Michelle Lopez is also busier than hell. Her job as Access to Healthcare program coordinator for the Community Healthcare Network takes her to parks, shelters, and WIC centers throughout New York City in search of disenfranchised people in need of HIV care and services. In the past 13 years, she has been involved with over 40 different organizations, either in an advisory or board capacity. In 1996, she organized with other community activists to form the Bronx Lesbian & Gay Health Resource Consortium. She joined the board of directors for Bronx AIDS Services in 2000, and worked with other mothers throughout New York City to found JUST KIDS, a not-for-profit serving children affected by HIV and AIDS. All this she does while raising her children and speaking out through various media outlets as a lesbian mother living with AIDS.

GOING PUBLIC

Who have been your mentors? Who do you look up to, and why?

Oprah Winfrey. Oprah's been such an inspiration to me -- we come from different backgrounds, but we're both so determined to survive and win. She's a fighter, and only the strong survive.

What made you decide to speak out publicly about your HIV status?

Well, I became jealous! The gay white male population was getting all the attention and support, because they were the ones that were speaking out. I'm a feminist and women with HIV weren't getting that help and acceptance, and I didn't think that was fair.

The other thing was my daughter's diagnosis -- I was thinking "Great, she'll be another female who'll just have to deal with this on her own." She'll be 15 in June, and she's doing well, by the grace of God.

What do you think is unique about your story?

My boldness! My boldness and braveness. Most immigrants are intimidated by the immigration laws in this country, but I take another bold step as an immigrant every time I see something else horrible happening to someone who's HIV-positive. Speaking out is therapeutic for me -- it helps me clean out the junk. How can we create change if we won't be bold? Networking is the most tremendous resource we have in immigrant communities -- we need to foster relationships and build community for HIV-positive people.

What do you think is unique about the audiences you try to reach when you speak out?

They're immigrants and women. Their voices aren't heard often enough in the HIV community.

What's the best thing about sharing your story with others?

Inspiring other Michelle Lopezes. I've seen it happen -- I speak out, and I inspire another woman who is just like me. Speaking my truth is part of a healing I'm going through, and by doing so I can share the light and see other immigrants come out.

What's the worst thing?
Oh, there's that "Madonna Syndrome," you know what I'm saying? And there's repercussions. People get scared; they say "You can't say that! You're not even a citizen!" And it's hard on my children sometimes. They have difficulty with their peers sometimes because of what I do.

What do your relatives feel about you speaking out?

They think I'm breaking the cultural norm. My mom, she says "Where does she get this from?" I get it from her! I get it from you, Mom! She doesn't see it in herself, but she fights in her life too. It's all about breaking cycles for me. There's generations of incest and trauma in my family, but I'm breaking that cycle. That hasn't happened to my kids. That cycle is broken.

What does your partner/spouse feel about you speaking out? Has she spoken out in any way as well?

I'm single right now. I was in a relationship for seven years, but now I'm single by choice and just being a parent. In my last relationship, I ended up feeling like I was being repressed -- my girlfriend had this attitude like "You should be happy to be with me because you're HIV-positive and who else would want you," you know? And I was like "Nononononono! No, you should be happy I disclosed to you!"

What have you learned about yourself since you began speaking openly about your HIV status? How has speaking out helped you, and how have you changed as a result?

That I am Somebody. Now what does that mean? What is "Somebody?" It means I can make a difference, love and be loved, share! I love Michelle now. I love just being Somebody!

DIAGNOSIS

Can you describe your feelings when you were first diagnosed?

When I was first diagnosed, I felt so scared, just petrified. Immediately I was thinking "Oh my God, they're going to take my kids! They're going to deport me!" I didn't know where I was going to go to get help. I actually saw an ad on the train (for Community Healthcare Network), and I went over there and they helped me out.

Did you feel differently a few months down the road?

Oh yeah.

How long do you think it takes to really process the diagnosis? Any tips for those who are newly diagnosed?

It's very individual. Some people can be 20 years out and still can't accept it. Now me, you give me lemons and I'm gonna make some damn good lemonade. If HIV is an elephant in the room, then I'm gonna move that elephant.

My piece to those who are newly diagnosed is this: Get connected! You are not alone -- don't segregate yourself or feed into that feeling of being alone. I wouldn't wish this virus on anyone, but it's about living, not dying.

If you want to, can you share you believe you acquired HIV?

Unprotected sex with my daughter's father. He's in denial still. He's not in my life now -- I have to worry about my daughter, not about him. Any bitterness or anger I had is gone, though; I just got rid of it. I have to live my life.

What do you believe was your biggest risk factor?

Unprotected sex with men. Girl, I'm not a CDC-defined lesbian! I'm a curious girl!

What do you think is the first thing someone who has just found out they have HIV should do? What's the second thing?

Seek out support resources! Do your research! Find an HIV specialist, infectious disease doctor, HIV services agency, everything -- it's not just about meds. It's about your mental health too! You gotta deal with disclosure, your family, the whole life you were already dealing with. You take the life you were dealing with before you were diagnosed and you add HIV ... Boom! Really, you're going to need other people for support, so go find those people.

The second thing? Live your life to the fullest! Just live! Now, that doesn't happen overnight -- it's one day at a time, just like with substance abuse. So the more resources you can access, the better it's gonna go for you. There's such a vast menu -- you gotta go out and connect the dots, meet people and learn from others, put it all together and apply it to yourself.

If HIV were a person, animal, or object, what would it be? Why?

Huh ... well, I was just talking about that elephant, wasn't I? So I guess it's an elephant. And elephants can be very damaging, but once you understand that elephant, you can find ways to live with it.

What do you think is the biggest problem facing HIV-positive people today?

Stigma! This disease is so stigmatized, and if we don't address that we're in trouble. People talk now about it being a "chronic illness" and all, but it's not diabetes -- oh no! You can see the reaction in people's faces when you disclose. I was just talking about this at a leadership forum recently -- we need to stop that!

What is the biggest change you'd like to see in HIV care? How about in HIV education?

Getting consumers more educated and involved in their care. So many HIV-positives are still so disconnected from that partnership with their doctors, and consumers really need to join in. Doctors aren't God! We have an opportunity to work together, and it can be very rewarding to have that kind of impact on each other. Realistically, we have to level that playing field between the infected and the affected.

When you look into your crystal ball, what do you see in the future for people living with HIV?

A cure. Really, I see a cure. I have such a connection with my spirituality, and we're gonna have a cure. If we keep talking with people and we get people connected and talk about the meaning of it and how to put everything we know together, we'll have the cure.

How do you maintain a positive outlook?
I can have a positive outlook because I've really found out who Michelle Lopez is, and I love her. And I can help other women find out who they are, and once we can all do that we can all love ourselves. I have to uncover and get rid of all the trauma from my life in order to get to me, and I can do that. I am living!

TREATMENT

What has been your overall experience with HIV treatment so far?

It's been an adventure, let's just say that. Yes indeed. I get mad when I see those mountain-climbing ads, but I have climbed me some mountains! There's that other ad where they're all on the beach, you know? When I'm on the beach, I'm thinking "Where's the bathroom?" But it's not just about me -- I have to work with my daughter to make her take her meds too. It was so hard: "Oh God, she's throwing up and I have to make her take these pills!" But you know what? At age 12, she fought with her doctor about her pill burden! She did! She walked into his office and she said "I am taking too many pills! You find me a study and get me into it now so I can take less pills!" And he did -- she was part of the Emtriva (FTC, emtricitabine) study. She's her mother's daughter; she knows how to negotiate. She teaches me things, oh yes.

What is your current CD4 count and viral load count? What was your first CD4 count and viral load count?

My current CD4 is 790, and my viral load is below 50cpm.

They didn't have the viral load when I was first diagnosed, but my CD4 was 327. And that was very traumatic. But I started learning about my illness and my care right away -- I was already an educator by the time the viral load test came along. Adherence means a lot to me, and it's less of a burden if I have support.

What HIV treatments have you been on, if any? Give dates, CD4 counts, and viral load counts, and the toughest side effects you've faced on treatment.

I was on the early things, so I've been on ddI (didanosine, Videx), d4T (stavudine, Zerit), 3TC (lamivudine, Epivir) -- that's still part of my regimen, the 3TC. I was on monotherapy, 800 mg of AZT (zidovudine, Retrovir), and my nails turned black and fell out and I went anemic and had to take Procrit (Epogen, epotein). And Sustiva (efavirenz)! I checked myself into the psych ward when I tried Sustiva because I was seeing talking unicorns, and that was when I was awake! One of my co-workers has erotic dreams all the time now from Sustiva, though -- she won't give that Sustiva up for anything!

How often do you see your doctor? How did you choose your care providers?

Here we have the "Special Needs Plan [SNP] -- [note: this is commonly referred to as SNP]," which is Medicaid managed care for HIV-positive people in New York state. I just started recently with my new doctor. He wants to see me once a month, because I have a lot of gynecological troubles. I'm going to see him on Wednesday and he's gonna kill me, because I was supposed to get bloodwork done and I didn't yet. I'll get it done in the morning before I see him, okay?

I chose him myself -- I need a specialist because I have gynecological problems related to childhood abuse, so I researched him. I read up about him; he worked with Anthony Fauci at the National Institute of Health! Everyone who's on the SNP can do this -- you call up [New York Medicaid CHOICE Program (1-800-505-5678)] and get the providers directory. A lot of people just sit around after they get assigned their card, but you can choose your own doctor out of the directory. So everyone should do their research and pick the doctor who's going to work out best for them.

What kind of relationship do you have with your care providers?

It's a partnership. We're gonna be the best of friends once we get things worked out between us. He told me "The hardest thing between you and me right now is when you don't do what I say you should do," but that's how I am sometimes. We're going to work it out, though.

Do you have a health/wellness regimen that you feel helps you keep healthier?

I take care of my mental health. That's a big thing for me -- I have my up days and down days. I'm on Zoloft (sertaline) right now, but I think I'm having some kind of breakthrough with that, so I'm going to try Wellbutrin (bupropion).

Any adherence tips for other people on treatment?

The key is this: Fewer pills = less toxicity. Learn about each regimen, and find the one that's going to work best for you. Aim for the best suppression with the fewest pills. Before, my doctors were choosing my regimen for me, but now I do my own homework and I'm picking my own regimen based on that research.

DATING

If you are single, how has your dating experience been since you were diagnosed with HIV?

I'm single by choice right now. None of us are perfect, but I'm meeting people with just a little bit more shit than I want to deal with these days, a little more baggage than I want to deal with. Lesbians with HIV are so closeted -- it's such a not-talked about, shameful thing. Better you should get it from shooting up than have to say "I had sex with a man!" Like I said, I'm not a CDC-defined lesbian! I'm a femme and I'm proud and no one can take my experiences away from me. I'm not ashamed of nothing.

What is your strategy for meeting new people?

For me, I just go out. I'm such a people person, and I love being around women. And I have such a thing for butches! I scope my victim, and then I just flirt -- I love flirting. I do my little thing, you know. I'm going to be Miss April in the next issue of SHE Magazine, so you all just watch out!

How soon do you disclose your HIV status to the person/people you're dating?

I disclose my HIV status to people I'm dating as soon as I meet them. I'm so public -- you can be driving down the street and see an ad and it's like "Oh! that's Michelle!" So if they don't know already I just tell them. The night my old girlfriend and I met, we were at a bar and we went outside to talk because she said, "I want to get to know you." I told her I was HIV positive, and she was like "Why are you telling me this?" And I said, "You said you want to get to know me!" And the next day, my Ricki Lake segment was playing on those TVs in downtown Brooklyn, so she'd have seen it anyway if I didn't tell her.

I have nothing to be ashamed of. I don't have a tattoo on me that says "HIV positive," but I'm gonna educate. Plus you have to bring up the conversation at some point -- I know what I've got, but I don't know what they've got.

Any tips for dating that you can share with other people who are positive?

Don't let HIV be an issue. Again, it's a disease. YOU are not the virus! There are wonderful things about all of us that we tend to forget, so get to know people and let them get to know you. Don't use sex as a way to get to know each other, either, but don't be afraid to have sex. Just get the issue out of the way early so you don't have to deal with the fear of being rejected -- if they can't deal, say "Alright, Darling!" and move on.

AWARD

Who would you dedicate this award to, if you could?

My daughter. She's such an amazing person. She teaches me things all the time. You know she was in the pharmacokinetic study that enabled pediatric dosing of Viracept? She was five when she was in that study!

PERSONAL

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

I wanted to be a journalist. I'm not one right now, but I'm so about talking to people -- Oprah, look out! I so see myself as someday having this healing show for women, not just women with HIV but all women who come from traumatic histories who need to heal. So many of us come from such traumatic shit, and people just want us to be about HIV instead of all the other complicated stuff that got us to where we are. We are not a virus! We are women.

What kind of work do/did your parents do?

My mom was a court reporter and did administrative support for the courts. My dad was a longshore foreman.

What kinds of work have you done?

Oh, computer billing, UPS, public jobs. Anything that gets people to talk with me. I love psychology, and that aspect of working with people. I did not want to be a nanny, not me! That made me feel so oppressed -- that's the first job immigrants do, being a nanny or a housecleaner, and I just said "No! I'm not doing this!" I graduated from school in Trinidad; I knew typing.

Who were the most influential people in your life, both professionally and personally? Why?

My spiritual mother, Rev. Donna Faria. That woman has such a level of tolerance and acceptance, and she's been so supportive of me and my family, so loving. And Oprah! I've already talked about Oprah. She just needs to come out of the closet now, that's all.

What do you like to do in your spare time?

Oh, shopping! And I play tennis, and I love reading. Reading gives me a chance to steal away into my own little world for a while.

Children?

My son Rondell is 18, and my daughter Raven is 14.

Pets?

No pets. I had a little Chihuahua named Charlie, but my best friend adopted him so we still get to see him. Eventually I'll have another Chihuahua and a beautiful bird.

Where do you live? Describe your community.

Our part of the Bronx is mostly Hispanic and African American. It's a working-class area where most people own their houses. Before we moved here I lived in a housing complex in another part of the Bronx for 14 years. I like it here -- it's close to the water.

If you could live anyplace besides where you live right now, where would you live?

There's this neat part of Brooklyn I'd like to live in -- it's a residential neighborhood with all these beautiful Victorian houses. I like to walk around that neighborhood and imagine myself living there.

What's the biggest adventure you've ever had?

Being diagnosed with HIV.

What are you currently reading? What book or author, if any, has had the biggest impact on you?

Right now I'm reading Chicken Soup for the Sister's Soul. The author who's had the most impact on me is V.C. Andrews, even though she's only imaginary.

What kind of music do you like? Which artists do you listen to the most, and who has had the biggest impact on you?

I like contemporary jazz, and tango. I love the steelpan drum; I'd like to have one of those. Those are Trinidadian, and come from when the slaves got their freedom -- that's freedom music.

Anything else you'd like the people reading this article to know about you?

I'm afraid of driving. Here in New York City you don't really need to, and I'm so Miss Daisy about it. I've never had a license and I'm so not motivated to drive.


Source: Interview with Michelle Lopez by Laura Jones

http://www.thebody.com/hivawards/winners/mlopez.html