September 15, 2010
Welcome to This Positive Life Video Series! We have with us Tree Alexander. At 20, Tree thought he had it all -- a wonderful job in Chicago and a loving boyfriend -- until the shocking news: He and his partner were both HIV positive. Barely out of his teens, Tree had to grow up fast, educate himself about a disease he knew very little about and seek treatment with no health insurance. This blogger, public speaker and AIDS advocate discusses the importance of adhering to medications, never giving up hope and the importance of educating his peers.
So, Tree, let's start at the very beginning. When did you find out you had HIV?
I found out one month after my 20th birthday. I found out after a partner of mine -- we were living together -- he began to get ill and have symptoms. And so we decided to go and get tested, but before we had a chance to get tested, he got sick and we found out about his status in emergency care. And then I immediately went and got tested.
And where are you from?
I'm from Chicago, Illinois. And now I live in Bedford Stuyvesant, Brooklyn.
So this happened in Chicago?
This happened in Chicago.
Did you tell somebody immediately?
The first person that I told was my sister. We're very, very close. We talk about everything. She keeps me motivated. I don't think she knows that she keeps me motivated, but she does. She uses me as a role model. So it forces me to stay motivated. It forces me to keep myself in line because I know she's right there waiting to see what I'm going to do next.
Wow. So you only told her. She was cool.
I told her. She was like, "OK, we can deal with this." She was like, "You know, you got to stay calm. Let's go to dinner." And then after that, she was at every clinical appointment I had. Everything that I had to go to, she was right there.
How much older than you is she?
We're actually twins.
Oh, you're twins. Wow. So you did this without telling your parents?
I did this without telling my parents.
What kind of care did you get? Did you have health insurance?
I didn't have health insurance and it was really hard trying to get health insurance. But I actually found a clinic that would do it for free. And I got most of my care there and then for medication, I joined a research study and got my meds through ADAP [AIDS drug assistance program].
I see. Was it very difficult to get free treatment and care?
Well, it wasn't very difficult to get free treatment and care, but it was difficult to get Medicaid in Chicago because they have rules about you having to be hospitalized for a certain number of days. At that time, when I found out my status, I was too healthy for medication. I had no signs or symptoms. I wasn't sick at all.
What was your CD4 count and viral load when you first got diagnosed?
When I first got diagnosed, I think I was at 450 and my viral load was maybe 30,000.
So because you weren't sick enough, it was hard to access the care.
Right. So I complained and argued to the hospital. "I want medicine. You told me that I have HIV, so of course I want medicine. Give me what I can get, so I can stay healthy." They were like, "Oh no, you're too healthy. Your numbers are too high." I was like, "So you want me to get sick before you get me medicine?" Until I was calmed down to be explained about the numbers and about waiting for medication, I decided to just wait and drink tons of orange juice every day and take all these vitamins until I was able to get on medicine. But my provider found a research study for early intervention. And as soon as she found out about it, she was like, "I know he would want this."
Because she knew that you just wanted to get on treatment?
And how many years ago was this?
This was three years ago. I'm 23 now, so I've been positive for a little over three years now.
And what happened with your boyfriend?
We stayed together for another year after that and then we started having problems. I was working a lot. He was doing his own thing. He started to cheat and we had a big fight and broke up.
Is he in care also?
At that time, he was in care. At that time when he found out his status, he was very sick, he had PCP [Pneumocystis pneumonia] and three opportunistic infections. So he was in care for that year that we were together after that. Since then, I haven't seen him.
How do you think you got infected?
I'm not sure. I don't know if it was that relationship or the one before that because it takes time to get the test done, but I know right before that relationship, I had just had a negative test result. And then I get into a relationship and we used condoms in the beginning. And then we have our conversation. "When's your last test?" "When's your last test?" And I was assured that he was fine. So about seven months into our relationship, that's when he really started to get really bad. I think it was about six months when we had to rush him to the emergency room.
It must have been really scary. You were very young.
It was very scary and it was not just because of that. It was because we lived together on a side of town where none of our family was. So it was just me and him. And to see him in that condition, it was very stressful. Finding out his status through him being very sick and then having to go get tested myself, waiting two weeks before I could get my results, that was really stressful. Because every day I wanted to call and say, "Are my results back? I know it's not two weeks, but I know that one test only takes a week. I want to know as soon as possible." So it was really stressful at that time. I think I just drowned myself in work, which helped me because they saw that I was there, that I was dedicated. So I started getting a promotion.
What kind of work do you do?
At that time I was working for the Chicago Park District. I think I was a rec weeder. After that I got promoted to a special recreation activity instructor. I did work there before I decided to move here to New York.
What kind of recreation? Do you have a particular sport?
I was running two facilities, which were the outdoor batting cages and the outdoor ice skating rink, as well as fitness classes. So I was running fitness classes, teach the class, create the lesson, create the moves and exercises. I had a lot. I think I did about 14 classes a week.
Did you tell them you were HIV positive?
No, not until before I left the company to move to New York. I told my supervisor I was positive.
What was the reaction?
At that time, I think I was going through the breakup with my ex. I was really depressed and I think I looked to her just -- I think I needed somebody to say it's going to be OK. And so I actually went into her office and I was crying. And she was like, "You're going to do a lot of things. And you're going to beat this."
It sounds like you got great reactions.
I actually did. Every time that I've told somebody, I've gotten a great reaction. Even when I talk to people and disclose on the street and people ask for my phone number and things like that, I'll tell. Some of them didn't like it, but they would just say, "OK, I'm going to take your number and I'm going to call you," and they never call. But it was never like, "Oh, you're disgusting. I don't want to be around you," type of thing. And some people after telling them, "Oh, it doesn't matter. I know," or, "You can tell me about it." And there are people that have relationships with positive people and it's not a problem. And I've dated negative people.
Since you tested positive, has it been difficult or challenging to find love?
Since I've been positive and since I've broken up with my ex, at first it was, because I had to get into the whole disclosing. Because I didn't have to disclose for a whole year, so it wasn't a problem. But then when I went back to dating, it was really scary because I was like, "I don't know what to say. I don't know when to say it. Should I say it at the beginning? Should I wait until like three months after getting to know the person? Should I say it right before sex? What's the best time to actually say it?"
And I think I dated about two people who were negative before I was just like, "It's not going to work." It's too emotional. It's too terrifying to just tell people like that. So then I started to research more about HIV and getting into the advocacy community. And then I started meeting other people who were positive. So then that whole disclosure thing was a little bit -- it blew it out because I was starting to meet more positive people, and publicly positive people. And that really helped me out. Since then, I've pretty much only dated positive people. It just so happens and we'll talk for about a week. I usually tell people up front. As soon as you ask for my number, I'm positive.
"Hello, my name is Tree."
Hello, my name is Tree. And they'll say, "Oh, can I have your number?" And I'll say, "I'm positive. Is that a problem?" And some people will say, "No, it's not a problem. Let me get your number," and then they never call. And other people call and disclose to me later about their status. And then we'll go out and we'll talk. I actually went on a date with someone and I told them on our date, everything on the table. And he started to cry. He told me that he had never met anybody positive, that it's not in his community, it's not in his neighborhood, it's not in his school. I guess --
Just to be clear, he's a gay man.
He's a gay man.
So it's not in his community?
It's not in his living community, in his living quarters. But he was like he's never actually talked to someone, met someone that was positive. And I remember him saying, "I'm going to learn so much from you."
So it helped him grow up maybe a little bit.
It helped him grow up. After that he was asking me tons of questions and he wanted to know more about it. I actually gave him more information about where to get tested in his neighborhood.
What gives you the courage to disclose? I know you've been on LOGO Network. You're just sort of out there.
I think the courage comes from knowing before I was positive, there wasn't -- like he told me -- there wasn't anyone positive at my high school. There wasn't anybody positive at my college. There wasn't anybody positive in my community. And I think that's where a lot of people say, "It's not going to happen to me because it's not in my community." But it really is. It's at your school. It's at your college. It's at your workplace. It may even be in your home. But people, there's so much -- there's so many people hiding that they're positive or hiding the fact of their health issues. And so what I want to do is help relieve some of that stigma and let people know that it's right here. It's right here in your community. It's right here in front of you. I am one of these numbers. I am a statistic. I am this. And you need to get tested because you may be as well.
But getting to having that drive to be so public about it, I get a lot of motivation from people that say, "Go ahead. You're doing a good job." And because I didn't have many people push me aside because of my status, I think that helped as well. Every time I disclosed, it was a good response.
Have you had bad responses?
I haven't had any bad responses. I had a best friend, a really good friend, I told him my status and he stopped talking to me for about five months. But now we talk on the regular all over again. And I think it was because he felt like I should have told him before. And I think it was because he was going through a little bit of his own depression. Most of the sad reactions come from the fear of losing.
Because I think a lot of people are afraid to disclose because they think awful things will happen.
Yes and that's what I want to do, let people in the community know, positive or not positive, that it's right here. It's right in front of you. There's so many people that are positive and they don't tell their families. So it could be very well in your family. So get tested, get checked out and understand it.
Did you finally tell the rest of your family?
I did finally tell my family. I actually tried to tell my -- I went to my father and I tried to tell my father. I just needed that support. And I went to help and I started talking about the emergency room, getting tested and before I could tell him my status, I remember him saying, "Oh if you catch AIDS, you're it. It's over after that. You might as well start planning the funeral." And I was just stunned. I couldn't say anything else. I think I told him that I was fine and didn't say anything after that for a year, a little over a year and a half before I went to him and told him again. The second time I went to tell him, I actually brought my medication and I was like, "This is what it is." Set the medicine on the table and said, "This is what I'm taking. This is how many times a day I'm taking it. These are my numbers. This is what numbers mean." And he was shocked, but he kept his composure-being a military man.
He's from the military?
Air Force. And he kept his composure and he said, "OK, I see that you have had it for a certain amount of time. You seem to have a good understanding and control over it." But then my stepmother told me later that he had his own bit of depression after that, with me being his only son.
I would think that he would also be depressed that you were dealing with such a challenging issue all by yourself.
And that's another thing. I want to help relieve some of the stigma because I remember being positive and wanting to tell people, wanting to tell people, but was afraid of what the family would say, what my father would say. Would I be blamed or would I have a support system? It was a lot of stuff going on, and I didn't really understand what HIV was.
You had to get educated.
I had to get educated. I had to inform and educate myself about what was really going on. And that's why I waited before going back to him because he's big, firm. You have to read, you have to know this, you have to have structure. So I had to make sure I was ready for the interview of my father. So any question he asked me, I had an answer for it.
How did you study about HIV and HIV treatment?
I went to support groups. I went to informationals. I read tons of magazines. I didn't really get many books on it, but I did get magazines, articles.
I understand you have spiritual practice that helps you live and helps you be happy.
I practice Buddhism. The main form is meditation and yoga. But I do it just to center myself, to find that inner peace. Basically to center myself and prepare myself for what's next. Now that I'm getting older and understanding and doing a lot of speaking, I need that self-motivation. I need to encourage myself from within to continue.
What's your job now in New York?
Right now, I am starting work with Housing Works, getting into the case management program. But I do outreach, advocacy for Mt. Sinai Hospital. And I serve on a number of consumer boards throughout the city. I want that to develop later into the planning council. But I do a lot of volunteering and speaking to the community and reaching out as best as I can, especially through social networking sites.
Tell us. I know you have a Twitter account. If somebody wants to tweet or get your tweets, what kind of tweets would they get?
They would follow me on twitter.com and my username is Healthy_Tree. I tweet about my overall health. Every time I take my medicine, I'll tweet. At the end of me taking my medicine, I'll say, "Did you take yours?" to help remind people of their medications. Every doctor visit, all of my results, my numbers, any symptoms that I'm having throughout the week, throughout the day, I'll tweet.
What else do you do? You're a real modern social networking guy. Do you do all kinds of stuff? Do you have a MySpace page?
I have a MySpace page that I try to update often, but MySpace I really don't get to as much as I get to the Facebook page. I'll blog on there or I'll put notes on my Facebook page just talking about what I'm going through. I think I wrote a note about how being publicly positive is very liberating, but it's also lonely because when I tell people I'm positive, they'll say, "OK." But then when I tell them I'm public about it, and that I talk to people and that my picture's being taken and that I'm here and that I'm there, so walking down the street, I may be recognized, then they opt out.
Because they don't want to be associated with you.
They don't want to be associated with me. Like having that connection with me disclosing with them is different than me disclosing to everyone. So I talk about how my feelings were, the people I was dating at that time who were OK with me being positive but weren't OK with me being publicly positive. So I talk a lot about being positive. I try to shoot out a number of resources like links, websites and facts that I get through email that I'll retweet or pass around.
Since you're out there on the Internet, do you get a lot of bad, weird people putting notes or anything?
No, I get no bad reactions.
I think that's very gratifying to hear. I think a lot of people listening to this or watching this think that you have to keep everything private because it's very dangerous out there. You've been very fortunate.
I've been fortunate in terms of HIV, but I remember growing up on the south side of Chicago, I was a victim of gay bashing on more than one occasion. So the fact that when I expose myself of being positive, I get different reactions than when I expose myself of being gay in certain communities. That's why I want to relieve some of the stigma and help people feel like it's OK to come out. It's OK to say that you're positive. If everyone can walk around and say that they have diabetes or they have cancer, why can't I say I have HIV? I think they're all health conditions.
Let's turn to treatment now. How did your labs change as a result of treatment?
Actually, I became undetectable after one month and my numbers went up almost 100 in a month.
So it went from what to what?
It went from about four something to about five something.
I think I stayed at five for a couple of months and it went to six. And by the time I moved to New York, I was at seven something, 720 I believe.
That's great. Do you feel good?
I feel good. I still exercise, not as much as I used to. For some reason when I moved to New York, I have asthma now. For some reason, I have to take an asthma pump. So I can't exercise as much as I used to, but I get to get a little bit of fitness in. And I watch what I eat. I'm very cautious about what time of day I eat. None of my medicine I have to eat with so it doesn't matter about that, but just being mindful of not eating too close before I go to bed.
Because if you eat right before you lay down, the food tends to settle in places where we don't want it to settle. So if you stay active and eat two to three hours before actually lying, then you're OK.
Do you eat healthy? Do you eat vegetables?
I eat a large number of vegetables. I don't eat red meat anymore. As far as everything else, I'm allergic to fish, so I don't eat any fish.
Do you take vitamins?
I don't take vitamins at this time. I'm just on my HIV regimen.
Since you moved to a new city, have you found new friends? Has it been easy?
Making friends in New York, I have to say, is not the easiest thing, but I have made a number of friends living in Bed Stuy. I've become very close with my neighbors, who all know I'm positive. We have dinner together. We have drinks and stay up and talk. Everybody is in some form of social health care. So some of them work for a number of nonprofits and case managers. So we all do the same kind of outreach type of work.
So it's been OK. And your sister still lives in Chicago?
My sister still lives in Chicago and we talk on the regular all the time. She knows everything that's going on with me. I don't need to see her as much as I want to. It's hard to make that trip often, but we do get a chance to talk and send pictures to each other.
What's the hardest thing about being HIV positive?
The hardest thing about being HIV positive, I find that when the weather changes and people around me start to get sick, I'm always worried about being compromised. I'm always worried about getting sick. If I do get a little bit of a cough or a cold, I will worry that my numbers are low and that's why I'm getting a cough and a cold, not because I just have a cold. So my health, I'm still a little bit scared of my health. I don't want to get sick, so I try to take care of myself. But times when I do get a little cold or something, I worry. I want to make sure my numbers are right. I make sure that I take my medicine on the exact hour and exact minute that I'm suppose to because I don't want any gaps.
How adherent are you? Have you never missed a dose?
No, I have missed doses.
How do you arrange to remember to take your meds on time?
I take them as soon as I wake up, so I keep a bottle of water and medicine right next to the bed. So my alarm goes off at 5:30. At 5:30, I roll over and take my medicine, [which consists of Reyataz, Combivir and Norvir], whether I get up or not, the water and the medicine's right there on the side of the bed , so I take it right then and there. Then my PM medicine, I'll take during the day. But it's the Combivir that I take twice a day. I'll take just the Combivir with me in a little, small discrete pillbox. I'll take it during lunch or when I'm having an early dinner. But I have an alarm on my phone that'll go off to remind me to take it.
What advice would you give to people who just found out they have HIV?
To find mental help and support groups. They really help you get the perspective of other people and helps you notice that you're not alone. I think that's one of the main things because if you find out you're positive and you're in care or you have a provider, I think the next step is to get mental support in support groups.
This transcript has been lightly edited for clarity.