January 28, 2014
Monica Johnson is from the small town of Columbia, Louisiana, but you may recognize her from the gripping HIV-focused documentary deepsouth. Her organization, HEROES, like many other small and struggling rural agencies, serves people living with HIV who might otherwise not have anywhere else to go.
After Monica became HIV positive through a blood transfusion in the early 1980s, she gave birth to an HIV-positive baby boy who passed away at a young age. Throughout his life and hers, she has faced the gamut of HIV stigma: Her son was asked not to attend school with other children, and Monica was asked to leave her town. She told them she wouldn't go.
As Monica herself puts it: "My glass is always half full": Not only did she stay put in Louisiana, she advocates for other Louisianans who are living with HIV. Her organization operates on a shoestring budget, and she knows how to make the best of HIV care when there is no infectious disease specialist even within a few hours' drive.
This interview was conducted in October 2012.
Can you talk a little bit about how you found out you were HIV positive, and what year it was?
I received a blood transfusion in 1984. And in I want to say 1985, 1986, I received a letter from the blood center, saying the person whose blood I received had died from AIDS, and they asked me to be retested. I think it was '85.
I was retested and the test was inconclusive. I was in school, doing my thing; so I didn't retest again. I was, like, "OK, cool. Not me."
They didn't give me a yes or no. And so in 1990, I was pregnant with my son. I told my doctor what happened with the first inconclusive test. She retested me, and the test came back positive.
What did you think, and how did you feel, when you first heard the news?
Well, at that point, I really didn't have a lot of time to think about me. It was, like, choices laid out about my baby: What should I do? Because it was early on -- there was no treatment, really -- it was like, "Do you want to abort? " She never said I had to. And my doctor was really supportive, so she never even recommended that I abort. But there were other people in her office, the counselors, who said, "You know, you really should think about abortion." I was thinking about what I needed to do for my baby at that point.
What did you end up doing?
I had my baby. He was born in April, Easter Sunday, 1990. So it was '89 when I found out I was pregnant. Because he was born in April of '90.
Well, for the first six months of his life, he was very, very, very healthy. He stayed on the growth chart and, you know, the little curves; he was right on target. And right at about 6, 7 months, when he started developing his own immune system, he started getting sick. And they sent him to my pediatrician, who I love, still, today; sent him to New Orleans -- because at that time, New Orleans still had a leper colony; I mean, just for study purposes. So they took him down there; they drew blood; sent it there. And they told us maybe the week before Christmas that he would develop AIDS and probably wouldn't live to be 1 year old.
How did you feel when you first heard that news?
At that point, I was like; I cried for a little minute. And then I came up with a game plan. We took pictures every day. We did birthday parties. We were doing our lifetime worth of stuff in the next six months. Because Easter was going to be in April; this was December. We was trying to get everything out.
What was your baby like?
Oh. Oh, he always smiled. Always, always. He was very happy. Always, always, always, always smiling, even when he was in pain. I've thought about that, because I've never really been sick -- I have gone to the hospital one time, but I've never really been sick -- but I just think they've put a man on the moon; I don't think anything on me should hurt. So I need to tell my doctors, "You need to work it out. I don't think nothing on me should hurt."
He never really verbally communicated, but a couple of times, he had kidney stones. My doctor said that was the extreme, extreme, extreme of pain. He would cry, but he still smiled through that. You know, he just always smiled. I'm like, that ain't the creed I'm cut from. I want something! So he was extremely happy.
Was it at some point during his life that you started to come to terms with your own diagnosis and think about yourself? Or did that come later?
No. Well, what happened was, when he was 2 -- in the state of Louisiana, if you have a physical challenge, or something wrong, you're supposed to be able to start school. I think at this point he was not thriving. He had fallen off the growth chart, and he had lost weight. You know, he looked, not sickly, but he was sick. And the doctor, his pediatrician, started trying to get him into the special-needs school, so he could start the educational process. And the school system where I live said "No." They did not want him to come to school. He could not come to school there, even when he turned 3. And "Nos" really fuel me.
So at this point: "Why can't he come? I want him to have everything everybody else gets." And so then anger kicked in, and so I started advocating on his behalf then. And I advocated on his behalf until he died. And then, when he died, I had about maybe about a six-month grace period. And I started thinking.
Well, no. What happened was, a friend of mine had a baby. And her baby was not infected. She was. And the school system was just not doing her right, because somebody had found out. And I started advocating. And I said, "I wonder how many times this happened to other people?" And they just don't want to say anything. So that's how it started.
How did you start to find other people?
Well, I was actually a part of a Ryan White II service agency. And the director at that time and I were good friends. My son was the first infant client. And so they just wrapped us up; took us in; did a lot for us at that point. And I had met a lot of different people, through groups and through events. And she had sent me to a couple of conferences. Because my son and I, actually: Before he passed, he had gone to an AIDS, Medicine & Miracles retreat with me in Oakland. And we met a lot of other people; found out, you know, you truly are not alone.
Did that, and then when he passed the director had not left then; but the director ended up leaving shortly after that. She should still be there because the director that they have now is not the friendliest, and, you know, really don't want to work with everybody.
When that happened, then I was still trying to be a part of there. Because, basically, the first director, you know, I told her ideas and, "OK, this is what I think." And so I would go to the new director, tell him, "I really think this would be good. This is how we should do it."
"But you're not a ... I'm a BCSW," (a board-certified social worker). They didn't really know that I went to school. I had a degree, too. But the degree didn't matter. Because if you look at our region, we are the largest geographical area in the northeast corner. So we had people that were coming from, like, probably four hours away, to come to a one-hour group. And the reason I'm saying four hours is because a lot of them had to catch a Continental bus. That's when we still had Trailways. So it stopped at every little city. It's a production to get over here. If they brought their kids (if they had kids) the organization didn't want the kids at their building. So for the kids, they had another outside site set up, where they would have to ride the bus in, then get on a city bus, drop their kids off at this location, and then come to this group; then do a reverse to get back. And it's a one-hour group.
I'm like, I wouldn't come to that! That's crazy! And they didn't feed. And everybody who knows me: If you feed me, I usually will show up. So that just would never work for me.
I kept telling him, you know, "Try A, B, and C." And I wasn't a board-certified social worker, so they didn't like my ideas. So it was kind of like, I never wanted to start my own agency. Because I thought it would take away T cells, basically. I was kind of forced to.
How did that start? And what sorts of services did you start with?
When we started, we actually started with just a women's support group. When we first started it was just women.
This is in Columbia, Louisiana?
No. I never did it in Columbia because the service hospital, the hospital where all the services take place, is in Monroe. Monroe is like the hub. So I always wanted to do something that was centrally located, something people would show up to. And I wanted to pick a place that -- everybody knew the name of this agency. They knew it was an AIDS service organization. I didn't want it to be there because, you know, most of the people were people of color. And they worried about stigma.
I had people at that time who, when my story was outed -- because people found out about my son before he died. And so my husband's job told the world for us. And they asked me to leave town. They asked me to get out, all that. The people that knew that, because it was on the news and in the newspaper; they didn't want to be seen with me, because they were afraid -- "If they see me with you, they gonna think" -- you know, at that point.
So, I never wanted it to be where they were afraid to come. First, I actually did it at a church -- because anybody can go to church, for any reason. And then we eventually moved it to the local Charity Hospital, where most people received services. So you could be going to see somebody; you could be going to blood work; any reasons. There are a lot of reasons you can come to the hospital. So we moved it to the hospital.
Going back a little bit, before we continue with your work: When folks were asking you to leave town, it sounds as if you stayed where you were.
No, I didn't leave. I stayed. They said, "Well, you brought this to our town." And at this point, I was actually volunteering for the AIDS service organization that was in Monroe. And I had a car so I was going back and forth to Monroe. So I was a volunteer, outside of just being a client.
So they had several clients that I would bring food bags to and do stuff for in Columbia. And they said I brought HIV to "their town." So. I'm like, "OK."
Did you keep on experiencing that kind of backlash? Or when you were like, "I'm not going," were people just, like, "OK," and backed off?
No. We had a lot of stuff that actually happened after it came all the way out: I would go into the drugstore. They would disinfect the counter before I could walk off. I walked up on people talking about me.
And it was OK. You could say what you wanted to say about me. But if you said something about my baby: That's when I had to let the dogs out. Because, again, I don't care. You don't know me; and you really don't know him. So I told a couple of, I guess, influential people, people who thought they were important, or whatever: "I don't care. Like, love, hate me; you will respect me always."
So, you know, if I'm walking down the street, I had people that would cross the street. Cross! Them your steps. Them not my steps. I don't care." So, eventually, a lot of people came around.
How big is the town where you live?
It's about 10,000 people.
What do you think are the biggest needs, as far as HIV care and prevention and access to treatment and testing, in your area?
In our area I would say the biggest need would be more education.
We don't have an ID [infectious disease] doc where I live. So I guess I would want somebody. For a few years, I was going to Washington, D.C. I was in a study and so I was going to D.C. to the doctor. I would say, "I have a doctor's appointment. I'll be back in two days." Because I would fly out for the day; and then they would bring you right back.
And I cannot tell you how many times people who, I would say, were semi-educated; they went, "Why are you going all the way to D.C.?" I'm like, "Because, you know, we don't have a specialist here. And I'm going to see somebody who knows."
"Well, I don't understand. You can just see anybody."
I'm like, "OK. I guess if your heart stopped beating, you're going to go see a gynecologist, right?"
"Well, I never thought about it like that."
"Well, think about it." After a few of those, it got better. But we still don't have an ID doc.
So, education. Continuity of health care. The hospital that we do have, the Charity Hospital, is a teaching school. So those people rotate in, and rotate out. And that's where, I'll probably say, 90 percent of the people that are living with HIV go in the area. And they actually have one doctor who has taken it on, and she is absolutely wonderful. But she is just a medical doctor, an internist -- no specialty. She's just taking care of a lot of people, and she does a wonderful job. I just personally would -- if I had a choice, and I'm having a heart attack, I want to see a cardiologist.
What's the journey been with your organization, HEROES? Based in Columbia; doing your work in Monroe, off-site. When was it founded? And what has its growth, or its history, looked like?
We got our own 501(c)(3) in 1999. But we were incorporated. We started about three, four years prior to that. We just had a fiduciary agency the first three, four years. And then I got a contract from the Office on Women's Health; actually, part of the contract was built in, where we had a mentor organization. We were the mentee; they were the mentors. And we had to put in our proposal what were our biggest needs, and what did we want to accomplish within -- it was a year, a 12-month thing. And in our 12 months, one of the things we said: We wanted our own 501(c)(3). Because, of course, we were giving money to the other agency for writing a check that we could write ourselves. And so they helped us get our 501(c)(3), April 1999. So we have got our own 501(c)(3).
Two years prior to that, my adopted son was getting ready to start elementary school. And there's no after-school activities or nothing for the little kids to do, but just hang out. And that's what most of them do. And even when they become grown, the big kids didn't know that, you know, at a certain point, you got to let it go. Big kids hanging out with the little kids. You know, a lot of drugs, a lot of teen pregnancy, a lot of stuff going on. So I was trying to figure out what I could do to keep my son off the street; so I started an after-school program, because I wanted to make sure he was off the street.
In time it grew faster. And one of my friends who works for the Office on Women's Health told me early on; she said, "Always give them what they want to get what you want out of it." And everything that we did, we provided HIV education and prevention education. So we started an after-school program, you know, that did academic enrichment, personal and social skills, health, sexual health.
All of the parents went through an orientation. We told the parents what we were going to talk about. It was not an abstinence base, at all; it was "you got the facts." So we gave it to 'em like it was. We had about 70 kids that came to our after-school program. You know, we had a waiting list for our after-school program.
It seems like everything you've been doing, no matter what, it's had a component of HIV education.
How do you think HIV has changed you?
Now, that's a hard one. I don't know if HIV actually changed me. It was seeing my son die -- which, I guess that was still HIV -- that changed me. Because when he got sick, that's when I adopted my "not letting anything make me lose one T cell" rule. So many times -- and I'm going to use, because I know more people of color and, particularly, more black people -- we take a lot of stuff for granted. We take a lot of things for granted. And we don't appreciate what we have, and where we are, at this point. You know, my glass is always half full. I don't care. And we have had some hard times in the last couple of years.
You know what? One of my good friends, they'll say, "I'm broke." I'm like, "You're not broke. Your check's just on the way; we just don't know where it's coming from." So my glass is always half full.
It seems like that attitude would serve you well with keeping your organization going and growing, as well.
Oh, it would have to. I was talking about me personally, and HEROES. Because back in the spring, it had gotten to a point where I said I never -- I hate to put negative stuff out in the universe; my glass is always half full -- but the organization had no funds. I haven't gotten paid in two years. Two years. I have exhausted every account. I don't like to borrow; I like to keep my friends. And I know I don't lend. So I don't want to play that game. And so I have a couple of friends who know if I ask them, then they know it's not, you know, they wouldn't think it was borrowing. If I ask them, I must need it. Because they know I just don't ask. And so I had gone to a couple of my friends and asked them. And after the second time I asked, they were like, "What's going on?"
And I said, "You know what?" I had thought about it. I had cried. I had had my whole come-to-Jesus. I hate to say the words, but we're going to have to talk.
So I called my board. I sent an email out. I talked to my board president, who is a good friend of mine. She got in touch with the rest of the board. We had a conference call. That morning, we had the meeting -- a conference call -- that afternoon. And I said, "It's only going to take about 15 minutes."
And when I called them I was like, "I need to know: What do you all want to do about closing HEROES down? And what do we need to do to get it done correctly? Because I cannot worry about the lights there, and the lights at my house." And that's where we were at that time. I said, "I just can't do it."
So my board stepped up and, you know, they took care of the agency -- I mean, took care of making sure the lights did go on and stuff, basic stuff. Then, you know, that was something I didn't have to worry about.
Who is your family now? Are you still married? Is your family supportive of your work?
No, I'm not married. I'm divorced. And I have an 18-year-old son that actually is my nephew I adopted right after my son died.
I say all the time: Your friends are your family you pick for yourself. So I get to pick my family. I love all of my people. I don't have to usually give them the boot. They all know the rules coming in. And so they can decide whether they want to be a part of the group.
But I have two siblings, biological siblings: one that lives in Montana; one that lives right down the street from me -- I'm saying down the street; it's an hour -- in our hometown. And then I have a couple of good, good friends who still live there. My baby -- my son that died -- his godmother still lives in our hometown. And another good friend of mine who, we went to like third grade back, all the way up. And then my best friend lives in Dallas.
And so they all know. Of course, in my hometown, I have Tammy, my program coordinator, and her mom, who has taken me on as her other person, her other kid. And Tammy had a baby; so I guess Honey would be my real pooh-pooh, my honey.
Do you think that you'll ever stop doing this work?
I have said for a long time I wanted to go on staycation, and not do it. And every time I try, it always evolves back to this work again. So I personally think I will stop.
I don't know. I can't stop now because I haven't got the person ready to take it over. But I have been working on a couple of my younger people who have a little energy -- and I'm not crazy to even think one person would do all that I try to do. I want you to learn how to do this, and do it very well; and I want you to learn how to do this, and do it very well. So I have a few people that I've been trying to get up to the plate.
How long have you been living with HIV?
It will be 29 years in February.
What do you think, if you had to have an opinion about it, what do you think has made it possible for you to live such a long life?
Grace. Grace. God is so good in his Grace. And I think, you know, besides you know, "the Book" -- you know, the basic instructions before leaving Earth, "the Book" -- it says, "In all your ways acknowledge Him, and He will direct your path." And I do acknowledge and thank Him in all my ways.
But one of the things that I'll say is your attitude. And I don't think my God wants you to be here moping, doping, sad. Because "the Book" has so many stories where He healed other people. Because I've had conversations with people, different people, who talked about, you know, HIV was a gift; and, you know, "Well, you know, this is a gift. It changed my life."
I would never say that. I would never go that far. Because if HIV was a gift, I would be at the return counter, giving it back. But I do think it was something that -- you know, everybody has their purpose. And it was just a part of the purpose for me.
This transcript has been edited for clarity.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.