Living with HIV has its uncertainties. While I’ve always been healthy for the most part, life has taught me tomorrow is never promised.
For a few years now, my immune system has steadily been declining. The harsh medications I’ve taken since I was 3 days old are taking a toll on my body.
Despite it all, I get up every day, and I live. I live because my mother and father cannot. I live because I know I only have this life. I take risks because my life may not be as long as my peers.
I can’t afford to regret the non-decisions, so I do it all.
So, if you ever look at me and wonder how or why it’s simply because I HAVE to. I HAVE to do the things I dream about because if I don’t, I may not have a chance tomorrow. I HAVE to move with the urgency I do because at any time a common cold could be my last.
I don’t expect you to understand fully nor do I want pity.
But on this day I felt the need to explain to those who applaud my actions.
I am not brave for what I do. I’m not superhuman.
My ambition comes from pure necessity.
I’m just trying my hardest to live my life to the fullest while I still have the energy and means to do so.
It was a difficult thing to do, but it was something he knew that needed to be done. On Dec. 1 – World AIDS Day – Ja’Mel Ware went public with some very personal information on his Facebook page. He was HIV positive. He had been so his entire life. He wanted the community to know what he has been going through and he asked them to please get tested.
“That was the first thing I said in about three years,” Ware tells Madison365. “I sent my girlfriend a text message at work and I told her I was going to make a Facebook message and asked her if it was alright. She said, ‘You know …. If you just need to do it, then you should just do it.’ And I felt I had to do it. I don’t know why, but I had to.”
Ware, who is the founder of Intellectual Ratchet, a lifestyle group that connects young, urban, professionals who seek an alternative to typical nightlife experience here in Madison, had been painfully outed many times as a kid growing up in Detroit and the kids around him (and, unfortunately, some adults) were always cruel. Sometimes extremely cruel. As he contemplated pressing send on his Facebook status, did Ware have flashbacks to that incredible pain that he once endured?
“I thought about it. But I was like … It doesn’t matter anymore,” Ware says. “There’s absolutely nothing I can do about it. You either take me as I am or you don’t take me at all. I’m OK with it.”
(In His Eye Photography)
Ware was born to Michael George Glenn and Robin Enez Ware in Detroit in 1988. Both of his parents were HIV positive. Before he was even born, doctors tried to bully his mom into aborting him. Mom was not having it, though. “She had a few miscarriages before me, she wanted a child and she loved my father and she told them ‘no,’” Ware remembers.
Ware was born with HIV passed on from his mother, and growing up in Detroit he would quickly see just how detrimental his HIV status was to people who didn’t understand the disease. His mom tried to enroll him in pre-school at the mega-church that was owned by people in his family. “My cousin told my mom that he didn’t feel comfortable with little Ja’Mel being there. Didn’t want to endanger the other students and upset the other parents,” Ware says. “So, I never went to school with my family. All of my family grew up together – school and church … not me.”
Ware ended up going to a private school called Cornerstone School in Detroit. “My mother told me, ‘You don’t tell people that you have HIV. This is our secret,’” Ware remembers. “My nurses knew, my teachers knew, but that was it. They were instructed that people only need to know if something happens.”
In fourth grade, that would all quickly change. Ware was getting ready to go on a school field trip and unbeknownst to him the day before they left, the trip leader held a big meeting with all of the chaperones and the parents and didn’t tell Ware’s mother or grandmother. “She pulled everyone together to let them know that I had HIV. So, the day of the trip, once we got to the hotel, my chaperone was like, ‘You can’t stay here. You have to go down to see the head trip leader,’” Ware recalls. “I got down there and she was like, ‘Ya know, nobody wants you in that room.’ She wouldn’t say why, but I knew why.”
The whole episode was devastating for Ware, who was only 8 or 9 years old and was going through the first real jarring experience around his HIV status that he could understand. The following week when he went back to his school, he went to class like normal but then was pulled out. “I sat in the principal’s office all day long,” Ware remembers. “The secretary kept saying, ‘We called your mother and she’s on her way.’ I’m my mother’s only child. If they called her she would be there immediately. I knew they were lying.”
That afternoon his mom came and got him. “Because it was a private school and despite my academic achievements and despite never being in trouble, they told me that they didn’t want me to take the test to get to the next grade,” Ware says.
His mother ended up suing that school. This was in the mid-’90s when education and awareness on HIV/AIDS was getting better than the ‘80s but still far from where it should be. There was still that huge stigma around HIV/AIDS that was far worse than other chronic or terminal illnesses. Studies have shown that depression, anxiety, and feelings of isolation are more prevalent in kids with chronic illness and children with HIV/AIDS have additional factors in complexity of their illness and treatment that make it even worse. Psychologically, young Ja’Mel was really struggling at this point.
(Photo by Hedi LaMarr Photography)
For Ware, he could only try to start his life over once again at a different school, this time a public school. He was pretty traumatized by the whole experience and he told his mom that he didn’t ever want to go through that again. “I don’t want ANYBODY to know. No teachers, no nurses. I don’t want to go through this again,” Ware remembers telling his mom. “I just lost every friend I’ve had since I was four years old. And for something I don’t even really understand. I’ve never harmed anyone. I’ve never done anything.
“My mother never lied to me about my HIV status. She explained it to me as this Pac-Man who was eating all my good cells in my body and that’s why we take this medication,” Ware continues. “The co-pays were so high that my mother made the decision that it’s either her taking the medications or her son living a comfortable life. She never wanted me to go to Detroit Public Schools. She’s a single mother and she sacrificed everything for me to go to private school as long as she could to not grow up in the horrible neighborhoods of Detroit. Her medication was one of the sacrifices she made for me and I didn’t know that as a kid.”
Ware, for most of his childhood, lived a double life. He started going to Camp Heartland, a special place for youth infected or affected by HIV/AIDS, when he was six years old. “I started doing public speaking when I was 7 years old so I became a camp ambassador because we had to raise money and the camp was free to everybody who went,” Ware recalls. “I would travel around the entire nation telling my story and I would never do that at home. I was afraid. My mother did this great job building up this fear in me that ‘you gotta keep your story out there so no one else can hear it … so you will be safe here.’”
Ware remembers Camp Heartland fondly looking back even though he lost so many friends and acquaintances along the way. “I met so many friends at Camp Heartland and it would be like, ‘See you next year!’ But you wouldn’t see them next year. They died,” he says. “I know more people who have died from HIV than are living, but I’m still here.”
Camp Heartland was always one of his childhood secrets. It had to be. At the time, there were stories of people’s houses being burnt down and people getting kicked out of school, Ware says, when they were found out. “Inevitably, all of those things came out and those type of things happened to us,” Ware remembers.
But then he was asked to come on the Oprah Show (“My mom said, ‘You don’t say no to Oprah!,’” Ware laughs.) where the Heartland Camp was going to be presented a check for $100,000 live on the show. “I was in the moment. It was an opportunity that you just don’t turn down,” Ware remembers. “It aired when I was in 7th grade. Mind you, I had been in this new school system since 5th grade and had just become acclimated. I didn’t get much airtime but I remember that jarring feeling of like, ‘Oh, wait. What did I actually do here? My life is going to be destroyed again.’
“Middle school is an awful time for most people. It’s where kids go from being sweet to just cruel. Watching it happen around me was terrible,” Ware adds. “But, at first, I put myself at ease and was like, ‘Seventh graders don’t watch Oprah.’”
But it turned out that seventh graders do watch Oprah. Or their parents do. Well, somebody did.
“The next day I went to school and my worst nightmares happened. As soon as I got on the bus it started,” Ware remembers. “I used to tell people that my father died of cancer, so when I got to school this kid came up to me right away, ‘So did your dad die of cancer of did he die of AIDS?!?’ I just ran away. Nobody would talk to me.”
The group of kids that he would sit down to have lunch with every day, as soon as he sat down, they all got up and left. “That was my life at that time now,” Ware remembers. “I went from being established to being broken apart again.
“To make things worse, my mother had minor surgery and got sick and never recovered from that surgery,” he adds. “So, I watched my mother die from 7th grade until right before my sophomore year of high school. My mother died a slow, painful death. By the time they got her on medication, it was too late. She had too much virus in her body and have no immune system to fight it off.”
And that woman was everything to Ware. The pain of her loss was overwhelming.
“My mom was always tough on me and she didn’t bite her tongue on anything … sometimes I didn’t even feel like she liked me,” Wares says. “But, in hindsight, I can see that this was her love. She knew I was going to have a tough life, so she was tough on me.”
Ware was a troubled young adult in many ways and found himself misbehaving outside of school straying into drug and alcohol abuse to help ease the pain, but he still got straight A’s and knew he had to go to college. How did he keep his focus through all of the tragedy? “I made my mother a promise. It’s that simple,” he says. “Plus, I needed something to distract me.”
Two months after his mom passed, Ware’s stepfather died from AIDS complications. He had a rabbit since he was six years old that also died during that time. “A few months later my grandmother died and my great grandmother died a day later,” Ware remembers. “I lost anyone who ever took care of me in a period of five months.”
Through all of this misery, Ware kept his eyes on the prize and the promise that he made his mother and that was getting his education which he did, graduating from high school and then graduating from UW-Madison in 2011.
But at some point, Ware got up to 300 pounds and he started to think about all of the people in his life who had died so young. “I said to myself that I had the opportunity to fulfill the wish I made to my mother that I would be the oldest person to live with AIDS,” Ware says. “I can’t do that if I’m overweight or have high blood pressure or diabetes. So I really started to focus on my health.”
He also focused on not being in the public about having HIV. “There wasn’t a year where I didn’t do traveling to help out Camp Harland or speak at a World AIDS Day event. I was just like: I don’t want to do this anymore,” he says. “Not only did I want to focus on my health but I had to figure out who else I was. Until I was 25, the only accolade I felt I could say was, ‘I survived HIV.’ I wanted to be more than that. I knew that I was more than that.”
Ware entered the second phase of his life with vigor and determination, becoming an entrepreneur and the founder and CEO of Intellectual Ratchet, a social group in Madison that aims to engage people of color in the community and promote cross-cultural friendships.
“I went to a Social X party in Milwaukee. They are a great organization and they do a lot of the young professional stuff,” Ware says. “I was driving back and thinking about the night before and they had this cocktail session at first, then this three-piece band playing, then they had this curtain that they pulled back and there was this deejay and all of these people in suits and cocktail dresses just dancing to this Hip-Hop and I was like, “Ohhhhhhh, this is a room full of intellectual ratchets!’”
Intellectual Ratchet plays an important role in engaging millennials and young professionals of color in a city that often sees talented black and Latino professionals leave for bigger cities because they don’t feel welcome in Madison. Ware was talking to a bunch of friends here in Madison and noticed that most of them were thinking about leaving. “Most of them were traveling to Milwaukee or Chicago to get something else they couldn’t get here,” he remembers. “I was like, ‘Why can’t we do that here? We have the venues. We have the people.’”
He became really compelled to do it when he realized that one of his friends was getting ready to leave an $80,000-a-year job in Madison for a $50,000-a-year job in Atlanta because the social life was so awful here in Madison. “I felt like that was completely absurd. You have so much student loan debt and you will pay it off way sooner with this job than the one in Atlanta… it doesn’t make any sense,” Ware says. “After that, was when I really started pulling people together and it just grew from there.
“Intellectual Ratchet is not a company by chance. It’s a company I created because I saw a need, but also was like I just want to have fun! I didn’t do a lot things as a kid because it was more important to me to be educationally successful than going outside to play. I didn’t see how that would be beneficial for my future,” Ware adds. “And I was always thinking about my future because I was feeling like I didn’t have a future. Now, here we are in the future … and I don’t see myself going anywhere, so how do we get back those years that we lost? Let’s have some fun.”
Ware’s lifetime of pain, anxiety, and worry has in many ways made him quite an “old soul” at the young age of 28. “I feel like that movie ‘Benjamin Button.’ I was born old and now I’m young,” Ware laughs. “It’s so funny because people who have known me a long time say, ‘I have no idea who you are now!’ It’s because I was always this serious child. I was always worried about something.”
Everything Ware does now, he does it with his mother – who sacrificed so much for him – in mind. His mom is always with him, he says … he can feel it.
“My mom is gone … but she’s not gone. I do truly believe that she’s always been there,” Ware says. “I had been so angry at her for leaving me that I couldn’t feel her for a while. But I feel her now.
“My mom always told me that I was special,” he adds. “My mother had seven miscarriages. I’m the only one of her children that lived … and she never let me forget that. ‘You’re here for a reason,’ she would tell me that all the time, and ‘you’ll figure out that reason.’ It is my motivation. I am here to do something. That’s what guides me.”
The fierce urgency of now was part of the reason why he wrote his eloquent Facebook status on World AIDS Day. Ware has seen too many people he loved in his life die … enough to know that tomorrow is never promised. Statistics say he wasn’t even supposed to be born. Statistics say he for sure wasn’t supposed to make it this far. Statistics say he wasn’t supposed to be this successful. But Ware has no time to dwell on the negative anymore. “Love conquers fear,” Ware says. “Love is why I am here.
“I don’t have anything to be afraid of anymore. I don’t have a reason to be angry anymore,” Ware says. “I have life. I’m still alive and I was given every tool I needed at the age of 15 to make sure that I could survive up to this point. My mother ensured me of that and I accept that. I accept my life the way it is now.”
Ware knows that there are kids out there getting taunted mercilessly like he once was because of their HIV status. He knows that people are out there struggling. He knows that we have evolved since the ‘90s on HIV/AIDS education and awareness but we still have a ways to go.
“HIV is manageable, but it still can kill you. You have all of these medications and you have to take them. HIV, as much as it is a physical disease … it’s very mental,” he says. “You have to know you’ll be alright as well. And if you can wake up every day and say, ‘I love me’ and that ‘I know I have this virus, but it’s not the end of my life’ … then you’ll be fine.
“Yes, I’ve been through quite a lot already in my life, but if it doesn’t kill you, it makes you stronger,” Ware adds. “As cliché as that is … It’s very real.”
