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Stepping Up to HIV Stigma in the U.S. South

An Interview With Monica Johnson -- Part of the Series This Positive Life

January 28, 2014

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It seems like everything you've been doing, no matter what, it's had a component of HIV education.

It has.

How do you think HIV has changed you?

"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.'"

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 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 and

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody. It is a part of the publication This Positive Life.

Reader Comments:

Comment by: Audrey (Seattle) Sat., Mar. 29, 2014 at 2:48 am UTC
This story is hard to follow. ..but ok.
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Comment by: Daddy.Bearby (Alabama) Thu., Feb. 6, 2014 at 10:44 pm UTC
You go girl don't fall down and lay there get back up and FIGHT with all your mite never accept the word NO as the final answer !
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