February 14, 2013
Marcia Dorsey had done everything expected of her growing up. She received a good education, got a good job, never drank or did drugs; and she stayed in one monogamous relationship for many years. After being diagnosed with HIV, she first asked herself, "Why me?" But then, after educating herself about the disease, she began to say, "Well, why not me?"
Part of a large family that goes back 14 generations in Howard County, Md., Marcia had to deal with disclosing her HIV status to her family -- including her mother, to whom she did not disclose for 10 years. Through the help of a local community organization, Acadiana Cares, and writing poetry, Marcia was able to deal with the loss of her very lucrative job and begin to live and be healthy again. In this truly moving, inspiring This Positive Life interview, Marcia reminds us that HIV has no look, and that it can enter your bedroom no matter what neighborhood you live in.
Tell me where you're living now, and where you're from.
Thank you for inviting me. I've got a lot to say. I want to be impactful with my statements. I want to be clear and concise. And I really want people, women, to understand what it's like to be HIV positive, what my life used to be like, and what it's currently like. So, just ask away.
Right now, I live in Lafayette, Louisiana, by way of Baltimore, Maryland. I like to tell everybody that I'm an original Dorsey from Howard County and Dorsey, Maryland, because we are 14 generations deep there. So I'm very proud of that.
I grew up, middle class family: father, mother both educators. I'm the second oldest, born during Hurricane Hazel. I was seven months, by two days, preemie. So I've always had that "hurry up and get there" type of attitude about things.
When were you diagnosed with HIV?
Well, it was on September 19, 1996. I had been dating -- in a live-in relationship, actually -- for about three years with a guy that I absolutely loved and adored. He got sick, mysteriously, one day. And I was working and put him on my health insurance.
So I think the biggest, the brightest thing about this whole scenario is that he and I wound up with the same doctors. So when he got sick and went to the hospital, and it was on a Friday; he had checked himself out of the hospital. So I said to my doctor, "Well, where did he go?"
He said, "Well, he checked himself out before the labs came back." Well, hell, I didn't know what he was talking about. So I said, "Oh, OK."
He said, "Marcia, did you hear me?"
I said, "Yes."
He said, "He checked himself out of the hospital before the labs came back."
I said, "OK, that sounds pretty stupid," and I started laughing.
He said, "Marcia, are you listening to me?"
So I said, "Yeah. You said he checked himself out before the labs came back. And you know, what can I do about that? Nothing." That was a Friday.
Sunday, I cooked my favorite Sunday meal: fried chicken wings; mashed potatoes and gravy; French-cut string beans. And I was washing the dishes, and I accidentally dropped a plate, and broke it. But when the plate hit the floor, I hit the floor. My knees went into all of the glass; and then I spread out on the floor on my knees, and started crying.
Because it had finally dawned on me what the doctor was telling me.
So the next day, I went and got an HIV test. About a week had passed and I was sitting in the office. And the doctor says to me, "Marcia, have a seat." Well, I knew I was in trouble because my doctor, who was crying, had told me to take a seat ... and I was already sitting down.
So then he says to me; he says, "Well, I have some bad news for you." So I said, "What's that?"
He says, "Well, the test came back positive." And I'm thinking to myself, "Well, that's great!" You understand? Because I was 41 years old. I was never promiscuous. Didn't smoke; didn't drink; didn't do any drugs. I had a monogamous relationship. So when he told me it was positive, I just figured that the coast was clear.
You thought positive meant good, basically?
Yes, absolutely. So I got to watching him, and he was in tears. And I said, "Well, Doctor, what's wrong?"
He said, "You don't understand, do you?" I said, "No."
He says, "You're HIV positive."
So I started to cry, and as one tear started driveling down my face, I was saying to him, "Well, how long do I have to live." He told me, "About 17 years."
So the tear dried up. I sat back in the chair. And then I just smiled at him. I said, "Well, hell, I could get hit by a bus in 17 years; die of natural causes." So I really don't know if I took it serious or not.
So they put me on AZT, and then, eventually, my friend died. When he died, everything died with him: the HIV died, the medicine died. Everything died. And then I took a position that required me to travel all the time. Because I really wasn't sure if this was something I needed to tell my family or not. And then, if I was dying, I didn't want to be dying in front of their faces. So I started traveling all over the country. I was a network technician. I made $150,000 a year; lived the life that I wanted to live; had no children; never been married; you know, more money than I could ever spend.
And then 9/11 came. I got stranded in Lafayette, Louisiana. My company went out of business, and forgot I was there. And the only reason why I found out they went out of business was because I had this extra money in my account, and I didn't want to get in trouble so I called them. The phone number was disconnected. The Web page was taken down. There was nobody for me to call.
But in between time, I had got me this little dog. And I promised him I was going to take care of him. So no matter how sick I got, I had to get up out of my bed at least twice a day to take him for a walk. And I couldn't even walk myself, OK? But I walked the dog -- which is amazing to me.
I finally had to come to terms with something. One morning I got up, and I sat at my computer, and I started writing poetry. By the time I finished, it was called HIV and Me in Prose and Poetry. One of the poems was "Risk: Realizing I Should Have Known." I wrote another one called "I Had to Die to Learn to Live." Which is true, simply because my old life -- the parties on Capitol Hill; going to New York; going to Texas; Niemann Marcus was just one of the ... one of the major things I ever wanted to do in life was to shop at a real Texas Niemann Marcus. I got to do everything that I wanted to do.
So the first person I told about it in my family was my youngest brother, because he and I were very close.
At this point, how long had it been since you'd been diagnosed?
Three years. And I guess the news was so devastating for him that he told his wife. But his wife was a control freak and, one day on the Internet, she sprang it on me that she knew. So I wrote her back. And my response to her in the e-mail was, "In order for me to care about what you think, I first have to care about you. And since I do not, it does not." So I just didn't care.
And at that point, I had, like, an epiphany. And then I realized that everybody I meet in this world is temporary. This is a temporary world, and the only person I had to carry with me everywhere I go was me. I couldn't leave me behind. I had to carry me everywhere. So I had to learn to love me, and accept what was going on with me. But it still was a trial.
But I was having a crisis about three years ago. And I had been already; I'd been 10 years with HIV. Three o'clock one morning, I just couldn't figure out why I couldn't tell my mother.
So at this point it had been 10 years, and you still hadn't told your mother?
I hadn't told my mother, no. And I didn't know why I didn't want to tell my mother -- or, I didn't tell my mother. But at three o'clock one morning, I couldn't ... You know, I was getting evicted. I didn't have any money; didn't have any finances; didn't have anything. I was on ... you know, Social Security hadn't come through yet. And my $150,000-a-year job was gone.
And you had lost it in 2001, around 9/11. So between 2001 and 2006, you had not worked, or found anything?
Not really. Because I got sick in 2002, and had quit my job. So, God bless me, with a hurricane -- now, mind, I told you I was born during Hurricane Hazel -- well, it was another hurricane that came through Louisiana that brought me to Acadiana Cares.
Was this Katrina?
No, it was 2000 ... it was one before that. It was in 2002, in October. We were signing up for emergency food stamps. And I didn't have a job anymore. I had just quit, because I just couldn't do it no more. And the lady asked me why I wasn't out working. And, you know, she was a Social Services lady. I told her, "Because I've got HIV."
Well, she gave me the number to our CBO, which is the community-based organization, Acadiana Cares. And the number she gave me turned to be a sex hotline. So I looked it up the best I could, in the phonebook; because I was new to Louisiana. I didn't know anybody. Had no family. Really had no friends. I'm dying and don't know who to confide in. And so I tried to find it as best I could.
So there was a knock came, knocking on my door. And it was a gentleman named Alton from Acadiana Cares. Acadiana Cares, back in 2002, took me on as a client, paid my rent and all my utilities, from December 2002 to April 2003. They provided me with food, transportation to get to my doctors' appointments. They made the Medical Center take me on as a patient. And they saved my life. From April of 2003 to October of 2003, they continued to pay my rent. I have nothing but love for them. They saved my life. That's why I'm here today.
Because every time they need someone to go out and advocate for people living with HIV and AIDS, I go. I go, because I can never give back to them what they gave me. They gave me back my life. They gave me back my dignity. They helped me feel like a woman again. They let me know that they cared, and that I mattered. They taught me not to be afraid. They taught me to take care of me, to love me, to look out for me. And they helped me learn to live.
Also, because having HIV and AIDS doesn't define who I am. It doesn't make me me. It's not my soul. It's not my heart. It's not the love that I care for people. It's just a disease that I didn't stand in line for -- it wasn't my turn -- that I got from a man that I loved with all my heart, who simply didn't know how to love me back. It happens. And God makes us soldiers in the fight.
Not all of us are brave enough to stand up. Not all of us are strong enough to speak out. Many of us hide in shame, as black American women, because we fear ridicule, and shame, and dishonor, and everything that the world thinks we should -- when it's not our fault. It's nobody's fault. It happens. So? It happens.
Your partner at the time, who it sounds like is the person that you acquired HIV from ...
Did you ever talk to him about it? I know that he passed about three years after you were diagnosed.
OK. What happened was, to be truthful with you, there was no reason why I shouldn't have gotten it. He was a heroin addict and I didn't know. He hid his needle upstairs, up in the linen closet, on the shelf too tall for me to reach. He knew I would never get on the stool, because I dislocated my jaw, and I was too scared to. He shared his needles with other drug addicts.
My partner, on his death bed, apologized to me for everything he had done to me. He told me that he loved me too much to tell me, because he didn't know how to let me go. And then I accidentally read his medical records. He had sex with men in prison. And all I can say is ... I used to say, "Why me?" and now I say, "Well, why not?"
You know, I come from the generation -- and I need people to understand this, too -- I come from the generation where you trusted the partner, your partner, especially in a monogamous relationship. There was no expectation to use condoms and, you know, protect yourself. We always thought that, oh, that's that younger generation -- that they're wild, and blah, blah, blah, blah. And the conversation about HIV and AIDS had just started, surfacing on a much different level than just gay people during the time.
There was no education for me to refer to. There was no dialogue about it. There was no reason for me to expect that that would ever happen to me. Foolish me. But why should it? It was not my lifestyle.
And how old were you at the time? You were 41 when you were diagnosed?
OK? Forty-one. I did everything I was supposed to do: went to school; got an education; got a good job; you know, didn't hang in the streets; didn't hang in the clubs; maintained a single relationship with one man. And it snuck in my house, crawled into my bed. And then he died, and left me with this mess. OK? He died. (sarcastically) How dare he die! He had been living with it for years. He had already coped, and accepted. Two years in, one year of knowledge, and then the fool go and die on me.
What was I supposed to do? I had two choices. I could choose to live with it, or die from it. And when there's a choice between life and death, people need to understand they have a responsibility and an obligation to choose life. Whether you're HIV positive or not, we all got that same death appointment. And God expects us to maintain and to take care of the vessel, until it's time for us to go home. So I decided to choose life. You understand?
A lot of this I didn't understand in the beginning. A lot of it I still don't understand. But I know that I'm a soldier in the fight. And I know that I'm educated and articulate and have the ability to be able to explain this on any level you want to talk to about it. I can do the high level, or I can do the low. I can talk to the educated. I'm educated. I can explain it. I can help you to understand it. I can walk you through it. OK?
Because this is my life. I live it 24/7. And I'm a happy person. I am ultimately and completely and wholeheartedly in love with me. And that's who you've got to love first. Because if you don't love you, nothing else matters. And I don't mind getting up to me every day. I don't mind taking me everywhere I go. And I stand up and I represent me, black women, my race, people infected with HIV and AIDS, and the ignorant people who are too foolish, to live in darkness instead of going out and getting tested. Because they simply don't want to know; they're too scared of the answer.
Do you feel comfortable saying which ones you are taking?
Isentress; Prezista; Norvir; Emtriva; and ... these two big white pills. I will think of the name of them. But, yeah, and I take them twice a day. And it can be cumbersome. It's not easy. Being HIV positive, I've learned some things. I know why old people give up and die. The regimen is so trying and so tasking.
When I was on Fuzeon, I became diabetic. So this is how my day went, for two and a half years. I had to mix the Fuzeon and inject it in my stomach. The needle was that big. OK? I had to take insulin four times a day, because I went from a non-diabetic to a four-time-a-day insulin shooting diabetic.
As a side effect of the Fuzeon?
As a side effect of the HIV medicines. And I had to test my blood sugar four times a day. So 10 times a day, I'm sticking myself. I've still got to take the other pills, you know. And because my T cell count was so low, I had to have breathing treatments three times a week. I have asthma, COPD. I have high blood pressure. I just found out that my vitamin D level is 15, and it should be 40.
But you know what else I have? I have life. And I'm going to live every day of my life. You know, I'm not buying into, "Oh, Marcia, you sick." Because the moment I decide I'm sick, I'm going to be sick; and then after I get sick, I'm going to die. And I made a pact with God. I told Him that I was going to outlive everybody, that I was going to be the last man standing. And I am. Because I'm happy. I'm happy.
I like to come to these things and to advocate, and to talk about it, and to share, and to let people know that, no; we're not members of the leper colony -- that we are breathing, feeling, loving, caring, human beings. And you're not going to disintegrate if you touch us, OK? There are no germs that we pass on the toilet seat. There's nothing you gonna get from us if we drink out of a glass, even if you sterilize it with bleach. You're crazy.
You need to stop turning people away. It's not their fault. It was not my fault. I used to say, "Well, I was the victim here;" but today I say, "I'm the survivor here." You know? And it's OK.
So, when you look at me, I'm not the drug addict, the prostitute, the sex person, promiscuous. None of that. When people look at me, unless I tell them, they don't know. There is no such thing as, "I can look at you and tell." No, you can't. You just can't.
That's true. So, now, how is your health now? Do you know your CD4, viral load?
That's part of knowledge. In order for you to be treated and get well, you have to know your numbers. OK? The first numbers I want to share with you are my T cell counts. When I went into treatment, I had seven. Right now, I'm hitting into the eight hundreds.
When I went into treatment, I had 350,000 copies of the virus in my blood -- 350,000. I'm at non-detection. And non-detection used to be 50, but it went down to 25; and I'm still at non-detection. You understand what I'm saying?
Now, you mentioned your mother. Were you able to tell her that you were positive?
Oh, I'm sorry. I didn't finish that, did I? I'm so sorry. That three o'clock in the morning, when they were going to evict me because I couldn't figure out where I was going to get the money to pay the rent, and I had to make myself call my mother and ask her? I was crying on the phone and I said to her, "Ma, I've got something I got to tell you. I've been trying to tell you for 10 years."
And she said, "What's that?"
And I laughed at her. I said, "Ma, I need money to pay my rent." Three o'clock in the morning. It's four o'clock on the East Coast. She said, "Pay your rent?"
I said -- then I just started crying -- "Ma." I said, "I'm HIV positive. And I've been HIV positive for 10 years. I have not known how to tell you. At first I believed it was because I didn't want to upset you. Then it became I just didn't know how. And now I can't go forward in life and do anything that maybe I can do to advocate, until I tell you. Because I don't want you turning on the TV one day, and seeing me on Oprah talking about I'm HIV positive, and you didn't know."
And so she asked me what happened, and I explained it to her. I had to reassure my mother that I was OK, that "I'm not going to die tomorrow." And she wanted to know why I wouldn't come home.
I can't go back to Maryland, not because I have HIV; I refuse to leave Acadiana Cares. Last year, when they had budget cuts, they cut out the pantry, and they cut out dental and vision benefits, and all of the benefits from the other 8 CBOs in Louisiana, in the South, Acadiana Cares provided us with food. We still had pantry. We still go to the dentist. We still have all of the things that Claude Martin, our executive director, envisioned for us. He is our champion, and we love him. Because he takes care of us.
So I gladly do this interview with you today in honor of them. Because they saved my life. And people have to understand that, when it comes time to vote, and Congress talks about bills, and cutting funds, and money, and stuff like that: they're killing us.
We're people. We're not numbers. We have people who fight for us every day. That man lives and breathes this stuff. So we have an obligation to get in the trenches and fight with him. And we can't do that by ourselves. We need your help. We need family and friends and constituents and doctors and lawyers and Indian chiefs to understand that they're not immune. They're family is not, you know, above getting HIV and AIDS.
I think it's ridiculous sometimes when we see people on the news, and say, "Oh, that don't happen in my neighborhood." No, baby; it happens in your bedroom. You understand that? In your bedroom.
And if you don't help us in the fight today that means it's going to be a fight that you're going to have to make tomorrow. And it's not on us; it's on you. You have a choice. Get tested. Go vote. And help. Those are your choices.
People say, "Well, I don't know what to do," so they decide not to make a decision. But what they really don't understand is that not making a decision and not making a commitment is a decision and a commitment not to help.
You can only be two things: part of the solution, or part of the problem. But you can't be both.
Do you think that anything would ever stop you from being an advocate?
Yes. Death. Because God doesn't decide who gets HIV and AIDS; it just happens. Through our journey, we're tested. We either yield and capitulate, or we stand up. People who don't stand up for stuff -- like they old clichÃ©, they will fall for everything. But you have to understand, too, that people just don't know how to stand up. They have a voice that they don't know how to express.
They have words that fall on deaf ears because they're from the South; they got that Southern drawl. "Oh, they live in that community," or, "Oh, well, they live in the ghetto." "Them people, they don't want nothing."
That's all not true. Those people want everything that you want. They want to live. They don't know how. Because they don't know how to ask. They don't know what to say. They don't know how to explain it. Because one day that crap just showed up at their doorstep. So they sit and they wonder what happened. Where did this come from? Who can I go ask? And if I have somebody to go ask, what do I say?
So I have to ask. I have to say. And I have to stand up. And I have to tell. And I have to share. And I have to fight. Because I have five nephews and two nieces that's coming behind me.
Black women bring our race forward. If we don't educate, show them, and tell them, we will be annihilated. There will be no more us ... unless of course you want to -- maybe I shouldn't say that -- but unless of course you want to count the white women who bore black children by black men. They're still black. They're still black.
And I laugh about that because, see, my grandmamma, my father's mother, was white. And so it's not a prejudiced statement; it's a true fact. Because all of us, we -- the Indian Nation people, every -- for you -- every color, we're very proud of who we are. I'm 14 generations of Dorseys in Anne Arundel County in Maryland; Howard County. There's a Howard or a Madison in every generation in our family. Proud people. Educated people. We're very smart. And we all love life. And we all participate. We don't run from fights. It's my battle and I'm here until I'm gone.
Any final words? Anything else you want our readers, people watching this video, to know?
There is something I want you to know. HIV and AIDS is not a political statement. It is not a part of legislation. It is not a law. They're living, breathing human beings. They're not just gay. They're just not black women. They're just not promiscuous people and drug addicts. They're everyday people, living everyday lives, working in mainstream America, doing what we believe to be the right thing to do.
But because of a stigma that wasn't our cross to bear, we get pigeonholed, and we get stuck. Just let that stuff roll. And the only way to effect change is to stand up and be counted and have a voice. We can call Congress. We can vote people out who are not in agreeance [sic] with us, and we can tell them that. You're not for me; you're against me. Why should we send your children to college if we can't feed ours?
You're there at my leisure, to provide service for me. And if I can't count on you when I need you, then you don't need to be there. We need to get rid of you and put somebody in that seat, in government, with the understanding they're there for the people, of the people, and by the people. It's just that simple. So I think everybody need to vote. OK? That's it.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.