Ethnographers:
Kaelyn Mikus
Jarett Baker
“When I accept Christ in my heart now, I feel more love in my heart, and [I] worry about others. [I’m] thinking different, positive all the time. Now I don’t think like if you hit me with rock, I’m going to hit you with a rock too. I don’t think like that no more.”
When approaching the McDonald’s in the middle of the busy AC outlets, there was a tall, lean man with a cane waiting outside the building. It was an ordinary greeting of hello’s and handshaking, then heading inside to find a seat. It was clear Martin had difficulty walking, hence the cane, and he quietly headed to an empty table. He wore a black jacket and jeans, bringing along nothing more than his cane and phone. He furrowed his brows from concentration during the nuts and bolts explanation of the project and after the interview questioning was over, he explained that he found out about the project through his support group. Martin explained that he was the first person to raise his hand in volunteering.
Martin is fifty-one years old. He’s from Puerto Rico but has lived in the States for several decades. He came to the United States in the 90s, while his family still resides in Puerto Rico. He is currently living in a room in a building with several others that he does not know, while he waits and hopes to be approved for an apartment of his own. Martin faced many difficulties growing up, including being raped multiple times, but he has kept a positive spirit and wishes to help others that went through the same struggles he did. Martin contracted HIV twenty-three years ago to kill himself. Since that time, his attitude has drastically changed about the value of life and all that it has to offer.
Martin has moved from an apartment to a hotel due to his inability to climb up and down the stairs. He has recently been forced to leave that hotel because they will no longer assist him in paying for the room. The tears streaming down Martin’s face as he tells this story only show a sliver of the unimaginable stress, pain, and perseverance. Underneath the layers of pain and hurt is a man who wants to make the world a better place, who aspires to write a book about his life in hopes of inspiring and helping others. A man who cannot understand why children are raped and left with no help like he once was. A man who longs for love, knowing that it’s out there somewhere and won’t give up until he finds it. And yet this three-letter acronym (HIV) is what he is reduced to; a three-letter acronym that has killed so many in Atlantic City, and around the world. Martin’s living situation has caused him a significant amount of stress. He explains that after being forced to leave the hotel, he is staying in a house with other people that he doesn’t know. He is waiting for his own apartment, but fears that securing a safe, affordable place to stay may be difficult.
...on the program the people pay for the rooms, they don’t pay more than 1 month. Oasis helped me pay this room for 2 weeks...that’s a group home. I have to use the bathroom with other people. I don’t have contact with them because I have my own room. I see people around, and if they talk to me, I talk to them, but if they don’t talk to me, I continue to walk because I don’t want any problems. I don’t want to bother anybody. So, I try to be away from the people because I don’t know if I’ll bother them. I don’t know if they don’t like me being there. I stay in my room and I have my stove. Today I cooked rice and beans. I’m good. Soon I know God is going to put my apartment in my hands and I hope that happens soon. Tomorrow I’m going to call the landlord and see what’s going on. Friday I’m going to call him again. Monday I’m going to call him again. Because I need a place to stay, especially this winter. I need a place to be safe you know? ...I’m leaving here next Wednesday because they don't have any money. If not here, I have to go to the mission. The point is that I have to be (...), I don’t know if I can do that in my condition you know, my bone condition. I have to look at the place to see if it is safe for me. If it’s safe, I'll stay but if it’s not safe, I'm not going to stay there. I’m going to stay someplace safe.
Martin had a unique motivation for contracting HIV. He was depressed and looking for a way to die. When he heard about what AIDS was doing to people in America, he thought that was the perfect opportunity to end his life.
One day my cousin was coming from Boston to Puerto Rico. In the 80s, he said that a lot of people were dying from AIDS. He said there’s no cure for that. A lot of people died, a lot. So, it’s going through my mind because I don’t want to live any more. When I’m coming here- and I’m 20- I’m thinking I’m going to get sick to die. That’s the only thing I’m thinking in my mind, Because I don’t talk to anybody. And I start to have sex with everybody, because I wanted to get sick so I could die faster...when I was infected, I was with three guys at the same time. I didn’t know about the three guys, and I didn’t care; I didn’t ask. The three guys passed away around the same time. One of them infected me. I don’t know who did it first, but I was with three guys because that was something that I was looking for. Now I don’t think the same way. If I had the mind I have now, I wouldn’t do something stupid like that.
When I found out, I didn’t care. I took the medication because they said it was good for me. But in the middle of all that stuff, my life changed. When I was in jail, it marked my life in some ways; it opened my mind. It’s something that changed my life. Now I think differently...but I felt a little happy in the beginning because I thought then I was going to die. That was the only thing in my mind. I didn’t have the strength to kill myself. I thought that this was faster… That’s not true; people can live 20 years with no medication. People can live two months and die. That’s the way some people are.
Martin fell into a downward spiral that led to his search for death. Most people who contract HIV don’t do it purposely like Martin did. As he describes his reasoning behind seeking a faster way to die, he looks back on the recurring incidences of rape that he suffered throughout his early life. Despite the scars that those painful memories left, Martin wants to use his experiences to help others who have also gone through them.
Sometimes other people give you HIV. I wanted to have HIV you know that’s different. The way I think before, in that time, I was young and I crossed so much in life...like being raped when I was 5 years old. I was raped again from 5 different guys. One time like 15 or 20 people raped me...it’s not easy...do you think I was happy or wanted to be happy because all those things happened to me and I didn’t know what to do so I wanted to die. That was the first step. When I was 16, I didn’t want to live anymore, because I suffered too much...so I feel sad everyday, because I don’t want that to happen to any kids. I don’t like that you know, I hate that. I like to think that I could do something to stop that. I could say to people, what, no, don’t do that cause that’s not right you know. It’s not right that that happened to me it’s hard...I didn’t accept anybody that does anything to little kids, it’s not right. I’m going to fight for that if I have to. You don’t touch a little kid.
Martin’s diagnosis first came from in his Santeria religious practice. He was told by spirits that there was something wrong inside his body. The medical test was simply a confirmation of what he already knew.
They told me in ’96. But I knew that I was sick before then. Like ’94, I practiced Santeria and I... (would) talk to spirits and stuff like that. A dead person uses somebody. He goes inside (them) and talks and says that I’m sick in my blood, that I had a problem in my blood. He said, I had some kind of sickness, from sex contact. But I don’t pay no mind, you know. I found out in that time, they told me. I have Hepatitis B too. So, I had a problem at that time with my liver. That’s when I started to do analysis and I found out that I’m HIV positive.
Martin’s outlook has changed since contracting the virus. He went from wanting to die to seeing the beauty of life. His decisions took him down a winding path, but he has realized that God had other plans for him. Martin thinks differently now; he understands the emotional toll that his potential suicide would have taken on his mother, whereas before, it hadn’t occurred to him at all.
At first, I felt sad. My social worker told me to go to a psychologist, but I said that I didn’t need that...so in that time, I thought ignorantly. Now, I don’t think like that. Now my life is completely different. It’s a 360…and I don’t want anybody to be with HIV. I wish they could stop that, I don’t know how, but I want people to not have HIV anymore. I hope they find a cure, so that way people can live better...when I got it before, I didn’t care. I got that because I was looking for that. That’s different. That doesn’t mean that somebody gave it to me or my boyfriend gave it to me. No, I got it because I wanted to be sick, because I wanted to pass away faster. I was thinking ignorantly in that time. I thought, if I have HIV, I can pass away faster. I can’t have cancer like that because it’s not as predictable. I want to have HIV, that way I can die faster and not continue to live. God said, ‘no you’re going to live to 51.’ And now I’m 51 and I’m still here. So, I thank God for that, because now I’m thinking not only for myself, I’m thinking for my family, my mother. And now I don’t have any kids, but imagine a mother lost a baby, it had to be crazy for the mother or father. I’m thinking now and I don’t want my mother crossing that. I want to see my mother’s death, then I can die. Because I don’t want her to suffer that. It’s not fair. In 2001, that’s when I started to take care of myself...if I knew in that time that I was going to cross all that, I would try to keep away and not get sick. I think differently now. Before I didn’t care about anything, I didn’t call my family. I felt like I had no feelings. My family didn’t know where I was for five years; they didn’t know anything about me. Because I didn’t care then, they didn’t know where I lived for five years. I started to have communication with my family. I’m wasn’t sick at that time. From ’90-’95, I disconnected from them.
Martin has used his spirituality to cope with the many obstacles that he has encountered throughout his life. He repeatedly brings up God in conversation, referencing Him as a source of stability and purpose.
Yes, I’ve always believed in God. I see that every day, when the sun is coming out. I see God up there you know. Everything beautiful that he does for me. So, God is real, and all my life I know that God is real. I believe because I feel God in my heart. I have God in my heart, I have the holy spirit in my heart. They make me feel good, and strong. In life to continue to live...he proved it to me. In my heart, in my mind, in me, in my skin, I feel God is real. If it wasn’t for Him, I wouldn’t even be here today. I hope in doing better and I want to get older, 80, 90s. I want to be okay, be happy. I want to find somebody that gives me real love...I don’t believe in coincidence. Nothing is coincidence in this life. When something happens, it happens for a reason. I see a lot of things happen to other people and I wonder why that person had to cross all of that. That’s when I think ‘thank God I don’t have to pass that.’ Thank God because I’m here. For some reason, YOU put me in this situation, because in that time I wanted to die; I wanted to destroy my life and no longer live because I had no help then.
The support that Martin receives from his family, friends, and coworkers helps him to feel accepted and less alone. He has rekindled connection with his family after cutting them out of his life for five years. Martin cares about others and hopes to have that same love in return.
I don’t have strength to do stuff, like before. Right now, I have somebody to help me all the time to carry the bags and all that stuff. Sometimes he goes with me to the appointments. He helps me, you know. But, he’s not my lover, he’s only a friend of mine. But he doesn’t want to go away. He wants to make sure that I’m okay. All the time, he’s there for me. Right now, I don’t feel that lonely for that reason…I have the best people around me. I keep it like that. When I see something not good, I say you can go away. If you’re not here to support me, you can go. Right now, in my life, I need support...my co-workers, where I worked in a casino in Atlantic City. I told a couple people at work because I don’t have my family here. The people that I told at my job were close to me. They said sorry, one cried with me...when I started practicing Santeria, that’s when I started to communicate with my family...she [his mother] acted normally you know. She did no crying, she accepted it you know. Maybe she knows already you know. I think she knows already. Before I say something to her I think to myself because I never asked her, but I think she knows something, something stranger happened. But I never say anything, I keep quiet all my life with everything. When I say something to my mother in 2000, she found out. She accepts me always no matter what. She loves me you know, and she demonstrated that she loves me. She’s a good mom...when my father passed away, I went to see him. That’s when I started to be in contact with my family…I have family that I don’t know. I never see them. Now I want to meet this part of my family that I don’t know. I have contact already. They either live in Connecticut or Boston. I found out that my cousins and my nephews want to see me too. One day I want to go over there to see what’s going on…For the other part of my family, everybody knows. My mother, my sister, my brothers, cousins, everybody...my family has an open mind. They give me support. They never say anything to me or teach me the wrong way; they support me. They help me, talk to me, they love me, they hug me. I have a beautiful family. I don’t have any complaints about my family or friends. For that part, I’m real, REAL happy.”
Martin describes his interactions with a past partner as cordial and friendly after the relationship ended. It’s apparent that Martin accepts love and gives it in return. As he explains this story, he ends by mentioning the interactions that he had with the people that gave him HIV. HIV touches all relationships, past or present, in one way or another.
These guys go with other people; they go out with other people. He still says, “hi” to me like friends. We’re not enemies...So he wants to be like that maybe he's not going to be with me for too much time because I’m a lesser person. Then I left it. Go away from that person, and that’s it. He still says hi to me if he sees me and says how are you doing and all that stuff. It’s no bad relationships...all my lovers they’re my friends you know. I don’t have that problem. Maybe that’s the way that I am. I like to give love, real love. An example, you like going to the movies, and you like football. I like Italian food, and I go out to the village and stuff like that, and you don’t like that. Well the day of my birthday you say did you like everything? That’s not love because why did you go because you like different things you know. That person because it’s his birthday you do what they like to do because it’s his birthday. If it’s not his birthday that doesn’t happen. I think that’s the right love when you are there no matter what happens. That’s because I have peace with my friends, and not only friends, but any kind of relationships. I had a lover before that passed away in 2002. In 1996 I’m with him, while I’m with 3 different people at the same time, but I go out with 3 people at the same time. I’m having sex with them and believe it or not the (...) is not good, because these 3 guys are HIV positive. They passed it to me because I have sex with them different times and different places. Now these people are because of HIV. I’m still alive for some reason you know. Thank God that I found out in time because if not I don’t know...I haven’t dated someone [who’s HIV-positive] but I’ve had sex with someone with HIV. When that happened, I used a condom but I don’t know how that (...). I don’t want someone to give me more. Then I would have to change my medication because that can happen. I use a condom anyway you know.
Although Martin has the support of loved ones by his side, he has also dealt with the social impact of the stigma that’s attached to being HIV positive. However, he stands up for what he believes in and doesn’t allow the negativity of others to have a big influence on his life. Because of people’s bad intentions, Martin is especially careful in who he shares his time with.
Sometimes having HIV, I see when people push me out. When people push me down and they say ‘no you’re a piece of shit because you’re HIV positive, you’re not good.’ They talk nastily to me sometimes. People go away and never talk to me. So that’s ignorant, you know. I try to be honest to people and say before doing something, before sex or something, I say to the people and they go away. Like I’m a monster or something like that and they never talk to me again. And sometimes I feel bad for that. Because, okay maybe it’s my fault that I have HIV because I was looking for that, but I’m still a human being. I have feelings, I want to be in love. I want to have a normal life like everybody...that’s the way I have to live now. Now I have to live and behave with people. Why? Because people are mean, you know. And I don’t like to be mean. But when you be mean with me, I’m going to be mean back to you because that doesn’t mean that I’m HIV, I’m nothing. I’m not a piece of shit. I’m a human being, I have feelings, I want to continue my life. I want get stronger and stronger every day...right now I pick my friends. Not everyone can pick my friends. Right now, I’m real picky, when I say picky I mean picky. I know a lot of people, but not everybody can be my friend. I have 300 people on my Facebook, but they’re people that I know, but they’re not my friends for real. Outside the people that I’m hanging out (with), so no. Only maybe 5 people right now that are good friends that I have good relations with. They help me, they’re there for me and always love me. Thank God for that, and I’m real happy in that part. I’m real blessed to have the friends that I have.
Despite difficult circumstances, Martin still tries to take care of himself and better himself. After being raped early in life, going through depression, having HIV and Hepatitis B, selling drugs and going to jail, living in a country without any family, and his recent housing difficulties, Martin still believes that life is beautiful. He has taken steps to improve his psychological, emotional, medical, and educational well-being. He treasures life more now than he did 23 years ago. Martin never forgot the advice he gained from someone, that taught him that one’s attitude is what will make the difference in life.
I think differently now. Before, I could be mean, I could be bad, I could be nasty. I sold drugs and was in jail. In that time, I didn’t care. But when I was in jail, everything changed in my life; I started to think differently. I started to see life differently and I started looking for mental help because I knew I needed that. So, I started to talk to psychologists in jail and they helped me. When I got out in 2006, I started to go to the groups because I still had problems; I tried to kill myself when I lived in Puerto Rico. They put me in therapy groups and that helped a lot; it transformed my life. In 2012, I practiced Santeria and then turned to Christianity and was baptized. It changed my life. I accepted the cries in my heart, but now I feel more love in my heart. I worry about others and I think differently, I’m positive all the time. Now I don’t think, if you hit me with a rock, I’m going to hit you with a rock too. I don’t think like that anymore. If you hit me with a rock, go ahead...I didn’t have my high school diploma, but in 2008 I went to school and took night classes. In every town in Puerto Rico, there’s a school. Out of the 65 cities, they take the smartest students and give them a medal. They had a ceremony and gave people certificates. I was the second recipient and that’s when I finished high school...my life, it’s okay. I have a good family. I have good friends. I had to get out from the apartment where I live, because they had steps and I can’t do steps anymore. I take care all my life. About HIV, I’m 23 years with HIV. And I take care of my life. I take vitamins, eat good, try to sleep well, don’t use drugs...You want to be good you’re going to be good. If you’re going to be suffering for something that happened to you then you’re going to be suffering. I learned that every day I don’t want to remember about bad things that happened. Bad things happen to everyone. The way is how I’m going to stand up and continue and don’t stop.
Martin reflects on his previous knowledge of HIV before contracting the virus, admitting that he thought it was a faster way to die. Having survived 23 years with HIV, he comments on the medical attention he receives in the States versus what it’s like in Puerto Rico.
I knew that it was a disease from sex. I knew that you could die. I know you can die from anything. You can die from cancer or pneumonia or something. Because I saw the news, and when I saw all the people that were passing away, I was like ‘damn.’ So that’s when I started thinking like that. Because I saw the news, I saw 25 one day, 25 the other day. When they started to die and die and die like that, I thought it was faster to die like that. I thought it was going to be like that with me, but it wasn’t. Now I’m 23 years undetectable. I take the pills, because in that time I thought I was going to die… ’94, ’95 I didn’t care...in Puerto Rico, being with HIV, it’s not easy. There’s no help over there. It’s only the clinic and that’s it. That’s not like here, where you have programs that help people. Over there, people with HIV, they don’t have help. If they get sick and they don’t have a place to live, the government doesn’t care. That’s not like here. Right now, these people helped me you know. I have a social worker and I have a lot of people around here that help me. Because right now I need that. I don’t have a place to live; right now I stay in a hotel.
Martin came into the McDonalds with his face red and his eyes swollen. He was being kicked out of the hotel, and forced to seek other living arrangements. During this difficult process Martin said he felt far away from God as his eyes began to fill with tears. Despite all the negative things he has been through, and the predicament that he’s in now, Martin was still overly positive about his life and the relationships he has with the people around him.
I don’t know nothing because I have HIV. They (that) don’t have nothing to do with me, my life is perfect, you know. Sometimes I have that but my life is good. It’s perfect. Sometimes I can’t complain because God is good with me...but I know God can do me (…) like change everything. I don’t want to change nothing. Because what I got, that’s what I want...No, I’m going to be happy anyway. That’s the reason I did it. I want it to be like that. Now, it’s consequence...it’s my fault. Nothing’s going to change, so I’m going to be the same thing, it’s not going to be okay...So, I’m, I’m trying to [live] my life the best I can, to live in here, in this world. I have everything. I have a good family, I have good people, good friends. I don’t use drugs.”
Martin has a strong belief in God. He thanks God for his life, and even says that he lives a perfect life. He reflects on other countries that don’t have medications for diseases like we do in the United States.
I try to go to church and I think being close to God makes my days perfect to me. Every day when I wake up, I feel that I have a perfect life. But it’s not like that, but I know it’s a perfect life for me because I imagine other people, they cross stuff, you know, like they don’t have no medication. Maybe in Africa how many people they don’t have no medication, for that reason those people die easily. So, I say thank God because I have medication here. Right now, the only thing I feel is the pain in my hips, in my joints. But the rest, for 23 years I live a happy life. And I feel the power of God. That’s because [I] say every day is going to be a good day. Even that I know that maybe I’m not going to have a house. [It’s] perfect for me, like that, have a house, you know. Be safe in my house, that way I can open the door without the people (…). the people I don’t want in my life. And the only thing that I can say God is good with me. And the only place perfect for me to be is in the hands of God.”
All of the positivity in Martin’s life encourages him to stay healthy. He takes vitamins, and used to go to the gym when he could. Along with staying healthy physically, Martin keeps his mental health in check as well.
I exercise before, when I go to the gym; but when I find out, I try to take vitamins, stuff like that, go to the gym more,and I lost a lot of weight. I feel healthy. I start to take the medication and all that stuff...I feel better and better. I be doing that for two or three years. (…) I feel wonderful...[But] I can’t work out...right now you see me (…) I know what I feel. Sometimes I move, when I walk too much. Like go way like that, I can’t control that, so that’s my hip.(he moves his leg abruptly). I try to do it myself...I go to therapy. I go to groups; I go to group two time a month. And one time a month (…) I see a psychology [psychologist] every week. I see the doctor every month, I do a lot.
Another big part of taking care of oneself for Martin is taking his medication. Medications for treating HIV have been controversial since the beginning of the epidemic. While some rely on them to keep their lives intact, others experience more harm than good when following the doctor’s orders. For Martin, medications have maintained his quality of life, although he suspects that taking them for so long may have had a lasting effect on his body.
The only problem that I have since the beginning, when I take new medication, that’s the only way that I feel like I won’t throw up. My stomach, when I eat, is not that good. So, that’s symptoms that you have. When you start the medication for the first few weeks, or one month, but if it continues you have to talk to the doctor and tell them what’s going on. You have to tell them that the medication is no good for you. Right now, I am never in a bad position, or sick or feel bad...the way I feel now, I don’t know if it my condition... My doctor one time said to me that the medication I take is maybe- it does that to my bones. I think this comes from all the medication I take for 23 years. I know the first person with HIV, it didn’t just happen to me, it happened to them too...a lot of people with that condition, that happened to. I don’t know why. They may need, and I don’t know why they don’t do better medication. If they know that medications do that, they want to find out why the medication is doing that. They can stop it…
Martin has a great relationship with his family and can talk to any of them while going through a tough time. He has had many difficult experiences throughout his life but he brought up one in particular.
I talk to my mom, I talk to my sister, my brothers...if I have to call the psychology [psychologist], I call the psychology. [If] it’s something bad, that feels real good or bad, I call the psychology. [If] it’s something that, something that (…) hurt, I know my body, you know...something like that happen in Puerto Rico. Because I had to do the test to be like a nurse. So, I wanted to work paramedical, be an emergency assistant. So, they say no, because I HIV. So, I start crying, that’s something that I love. That put me down. They say, but you can take that, I never go back. I go away and I never want to do nothing. That happened in 2009. In 2010, I go back to school to go to take technology and x-ray. I don’t finish. No so, now I’m here.
The future can be a scary place, especially when it’s unclear what may happen in it. Martin focuses more on the present instead of the future, knowing that uncertainty lies ahead. Martin didn’t wish to have any children; however, he has recently had the desire to have a daughter.
Every time is today for me, because I don’t know when, I don’t know if I’m going to wake up tomorrow. I want to (...) but I don’t know if I can do that, but if I can do it then yeah maybe in the future. But I don’t know because I might not wake up tomorrow. Sometimes I think, sometimes I’m not. Just like everybody else. I don’t think that different. I think the way I think...before I didn’t want any children. Now, I wish that I could have a daughter. I don't know because the condition that I live with right now, it’s not good to have kids. So, I know it's not good right now. Maybe soon in the future. Kids they don’t have no house, or no family so I can be their family. I don’t want a boy, I like girls...I think girls are more cute.
HIV has torn apart the lives of those afflicted with the illness. Many have watched their loved ones die a slow and painful death, while fearing that they may be next. Martin’s story of resilience, hope, and love shows that HIV will have to try a little harder if it wants to win. It’s also important to remember that HIV-positive individuals are still human beings. Society has not made this life-or-death fight any easier. Spreading awareness about HIV/AIDS is the first step in making individuals more aware of the life-threatening effects caused by this illness. There are several organizations in Atlantic City that have made this their mission, among treating those afflicted. South Jersey AIDS Alliance, The Oasis, and AtlantiCare are some of the major changemakers that have helped many in the Atlantic City community. These organizations provide medical as well as psychological, mental, and social services. Most importantly, HIV-positive individuals need support from others that do not suffer from the illness. A real difference will be made if citizens worldwide band together to initiate change. Only then will true progress begin, and people like Martin won’t have to suffer any longer.