I still get to live

Ethnographers:

Ashley Pintor

Sicily Samuel

And what they fail to realize is that just because I’m HIV + it does not stop me from living. It doesn’t stop me from being happy. I have a disease, that disease does not have me.

Shorty opened the door with a welcoming smile, and the greeting, “It’s nice to meet you.” She wore a long sleeve gray sweater, a pair of fashionably washed light blue jeans, and burgundy nike shoes. Her hair was shoulder length and was straightened. She wore small hoop earrings and a crucifix around her neck. Shorty is a fifty year old African American woman who was born and raised in Atlantic City, New Jersey. She began her story recounting how she found out she was HIV+.

Actually, I was diagnosed in 2008 when I had to have major surgery. That’s when I found out. But I knew how I got it. But I didn’t know until- I was dealing with a guy, he was dealing with other people and he passed away from it. At first, I thought I did something wrong but I’ve come to terms with it. It's not a sickness- to me I’m considering and I felt like it was something I got that now I have to deal with each and everyday. But I am the same as the next person. Just because I have it, it doesn’t change who I am.

Like many people around the world, Shorty didn’t know a lot about HIV before her diagnosis. However, her knowledge expanded as time went on and she was forced to come to terms with her diagnosis.

Actually, I didn’t know that much...I heard people talk about it, but I really didn’t understand it. But then, when I contracted it, I understood more and more as time went on. When I first found out it was a scary thing. And I really thought God was punishing me for something that I did, but actually it had nothing to do with that. And it’s like the more I know, the better understanding that I have and what really like aggravates me at times is how people consider it like it’s… what’s the word I’m looking for… that it is only the DISEASE. It’s like we’re crazy because we have it. You mention you’re HIV and to them it’s like a disease, an epidemic like the plague. And I know it’s just a disease that we live with, but we’re normal just like everybody else. It’s just that we’re HIV positive, we still get to do everything that everybody else does. It’s just, we have to do it a little better and a little safer.

Shorty doesn’t use words like the plague, demon, or curse to describe her disease, or use terms that would be easier to explain that she is HIV+.

Well, there’s no other term that you can use. Okay, ‘well I’m sick’ ‘well why are you sick’ ‘because of this’. There’s no way to try to get around it. There’s no way to try to sugarcoat it or anything else. It is what it is.

In the beginning, Shorty believed that she was being ‘punished’. Finding out that she was HIV+ affected her life in unpredictable ways but she did not let the disease define who she was. While Shorty talked about the early days of the diagnosis, she had to keep looking away and taking a small pause before continuing.

Oh, I contemplated suicide for a minute. I really did because I thought God was punishing me for something and I...I wouldn’t even talk about it. I was just going, spiraling basically out of control. I thought if I hurt myself… if I killed myself then the world wouldn’t know. Then, after a while I thought “wait a minute,” just because I have it, doesn’t mean I get to stop living... I still get to live. When I was first diagnosed, it really took me for a loop because I couldn’t understand why it happened to me; “what do I do, was it my fault?” And I got to the point where I was contemplating suicide. Any and everything I could think of I considered “should I do this, should I do that?”. And it took a therapist of mine to actually put me in a place where it gave me enough time to think. All because I have this disease it doesn’t have me because I still can live. I can still be me. It’s still a little emotional at times. I can still be me. I can still live and I can still go on with my life.

Shorty knew that it was time to seek help after things got too difficult to handle on her own. She and found the help she needed, and it gave her a new perspective on how she views things.

I was diagnosed in 2008 … I was on a downward spiral in about the end of 2009 to 2010 when I really felt myself losing it. When I was contemplating suicide, and that was starting to become a reality, that’s when I knew I wanted to seek help. That’s how I knew I really needed to see somebody because I couldn’t deal with this by myself. I thought I could like -- ‘oh i don’t need no help, no’-- wouldn’t take the medicine, wouldn’t do nothing. But then it got to a point where this is really tearing me apart. Like you’re sitting up there and “wait a minute! now it’s time for me to go seek some help before I really do something to myself”. And when I went to talk to her because I would usually go to group sessions once a week, and we had a one on one and we were talking and she says “Do you have any thoughts of suicide” and actually I looked in her face and I said Yeah, every single day. I need help. I have thought about hanging myself. You name it, I have thought about it.” If it hadn’t been for her, I don’t think I’d be here today. She is the reason why and I had to actually have time to sit up there and really think. What’s going on? What am I doing? This is not helping me, this is hurting me even more. So I need to figure out what I am going to do and how I’m going to figure this out and I need to figure it out quick.

She described her struggles of suicidal thoughts and the readjustments she had while in treatment.

So the time that I had, well it’s called called “Pit”, it’s like a place in the hospital where they take you if you think you’re suicidal. Well, I didn’t think I was suicidal, I knew I was suicidal. And they held me in there for three days and you only have time to think. The only thing in there is a bed, and a door, with a window (gestures) this big and this wide. There’s no tv, no nothing. You don’t get no nothing. So I think I was there for three days, so all I had was time to think. Being in there, it really opened me up to… no matter what I do I still got this so I need to deal with it. I needed to learn how to deal with it and still be me. And there’s times where I’m like it’s just a disease, I’m still me. I’m still human. I can still have a life, still have a boyfriend, and still live a normal, happy life. But at the time I wasn’t thinking about that. That was the furthest thing from my mind, I’m like no this cannot be! It took me a while to actually sit down when all you have is time to think. And I’m like, “wait a minute! This isn’t me. This isn’t what I want. I can still survive, I can still be healthy. Now I’m like okay, let’s get me in order now. And I thank her, because if it weren’t [that nurse], I don’t think I’d be here … I started going to therapy, started getting on my regimen.

After getting help, Shorty now starts her day just like anyone else, but with a greater emphasis on health. She does her best to stay healthy and make sure that everything is well during her check-ups.

My normal day is getting up every morning, popping four pills a day, making sure that I get my blood work done that my ct levels are the way they are supposed to be. That’s a normal day for me. Well, I take my medicine everyday, I make sure I see my doctors like I’m supposed to. I try to eat healthy. Try to, because sometimes I like to cheat every now and then. I mean everybody likes to cheat now and then when it comes to eating.

Like others who are HIV+, Shorty faced a lot of stigmas and false expectations from people who didn’t know a lot about HIV.

I’ve had people tell me that they didn’t want to drink behind me, they didn’t want to hug me. I mean, yeah. Because of their lack of knowledge of what HIV is.

And little do they know, they’re more harmful to us than we are to them because our immune systems aren’t like there’s. You sneeze on us, we can get sick so quick, you know what I mean. It could do more damage to us than we could just touching you because our immune systems aren’t like yours. And this is what I tell people today… I wouldn’t want nobody to go through what I go through. Who wants to get up every single day, not unless they have to take four and five pills a day, seven days a week. If I had my choice I wouldn’t, but I know it’s what keeps me going. It keeps me undetected. So yeah… every single day, like tic tacs …

Adding to the difficulties which accompany an HIV positive diagnosis, Shorty also spoke on the toll that the stigma of HIV and AIDS put on her relationships.

Did I lose friends behind it? Definitely. But the one good thing, my family never turned their back on me. They love me even more now. But I did lose friends. Well, at least I thought they were my friends at the time. Do I get judged by it? Yes. Is the stigma out there? Oh, definitely. See the only thing they see is HIV they don’t see me. They just see a person who has HIV… the plague. But as time goes on, I feel as though no matter what they do, it’s still not gonna change who I am because I still have to live. And you being mad and judging me for what I have and who I am then that’s not up to me. That’s not up to me, that’s your prerogative and your preference because I’m not gonna lose any sleep, I still got me to worry about. I cannot worry about what that one thinks or what that one says because they’re not in my shoes. Unless you walked a mile in my shoes you really don’t understand what I’m really going through. So you can sit up here and do this, but it still is not gonna change who I am. Cause at the end of the day I am still going to be me.

Many people have misconceptions about what HIV was and how it was contracted due to their lack of knowledge on the subject. Shorty spoke further about some of the stigmas and misconceptions that she herself has faced as a person with HIV.

They consider it a plague … if people have it there is something wrong with them. And their conception is, everybody got it from being gay, and that is not true. That is not true, you do not-- you cannot get it just from being gay, you know, blood transfusions, drugs, but everyone has their misconceptions like ‘you’re HIV that means you’re gay.’ I didn’t know the guy I was with had it. I didn’t know he was into guys so does that make me gay?

Despite her health struggles and the added challenges posed by discrimination, Shorty started to realize that she didn’t have to let “ignorant people” get to her.

Well, I mean at first I cried. But then, as went on, I felt as though some people are still ignorant. They’re still ignorant, their lack of knowledge- to me it’s just coping. One other thing I realized is when people don’t know something, they try to do the best they can to make you feel bad because they don’t have an understanding of it. Until this day, It’s ignorance. Like I said, I’m HIV+, I live my life. Everything. Just like you put your pants on one leg at a time, I do the same thing. You get up in the morning, you shower, you eate, I do the same thing. The only difference is that I’m HIV +. That’s it.

Whenever people responds negatively to her diagnosis, Shorty tried to not let it get to her and to remind herself that she is still herself despite what people say. She decided that if they couldn’t accept her, then that was on them.

It used to hurt. But you know what? No matter what I do, everybody is different, everybody is going to have their opinion… So if you don’t like me because of what I have instead of the person that I am, then that’s on you. Because at the end of the day, I’m still me. I’m human, just like you are. I have feelings, just like you do. If you don’t like me because I am HIV+, then that’s your mentality.

Throughout everything that Shorty has been through, she is able to confide in both her family and her boyfriend. That have been there for her when she needed them the most. She made sure that people knew how grateful she is for their support.

My dad, my brothers, we’re fine. I mean I can honestly say that my family has been the biggest help. They are like my biggest supporters. And I’ve been in a relationship for a year now with this guy and he is just awesome. He is just so awesome. And I didn’t think that I would have that support system when I tell everybody, but I do. I have awesome support. And then I go to see them- I don’t know how to explain it. Like I have that support system. I didn’t know that I would when I first came out. And when I did start to tell everybody, I know how everybody turned their back on me.When I stepped out and told my family; they have just been my rock, my salvation. They keep me going. And then I have this awesome man that I have been in a relationship with for almost a year now. And he is just awesome.

At first Shorty was unable to come to terms with the fact that she was HIV+ but after coming to terms with it, she has become more in tune with herself than ever before. She is now more aware of how she feels throughout the day and how that impacts what she does.

I got to know me better. I got to be more in touch with me than I did before, It’s like now I have more of a reason to keep moving on. I have more of a reason to keep surviving and doing what I have to do now. I mean, do I wish I never got it? Yes. But am I blessed? Every single day. Everyday I wake up is a blessing. Sometimes I’m tired, because of the medicine that I’m on. Some days I don’t feel like doing anything. Other days I feel like I have the energy to move mountains…

Shorty has always been a spiritual person because while she was growing up, her mother has always talked about the days being a blessing. She feels like there is a reason for her being here and alive today.

She (mom) always said ‘everyday that you have is a blessing’. When you wake up, it's a blessing. When you could say ‘good morning’, It’s a blessing. And that’s me, I’m blessed. The man upstairs. I’m here for a reason, not for a season. He has me here for me to do something. I mean, I haven’t figured it out yet, but I’ll figure it out.

Despite the belief that doctors and health professionals stay unbiased while they are working in hospitals, Shorty has had an experience where a doctor have treated her unfairly because of her diagnosis. Although she let it get to her at the beginning, she no longer dwells on what other people think about her.

I mean, I did have a doctor that did that. I don’t know if it was because he was foriegn or maybe he didn’t understand . I’m not going to make excuses, but yeah, it did happen. I felt hurt, felt disrespected. I cried. But one thing I learned, no matter what people say, no matter what people think, you still have to keep moving on. You have to show that you’re a survivor. And no matter what they say or what they do, you have to be the one to determine what the outcome is going to be. You’re going to judge me no matter what, it’s up to me to take it as a good way or bad way. It’s up to me. The way I’m going to do it. I’m like this ‘I have to keep moving on’ because at the end of the day, I still have me.

Shorty attempted to hold in her tears while talking about her fears about how HIV will impact her future, she had to keep looking away and had difficulty talking about it. She fears that there will be a day that she will no longer be living and that she will be unable to have her own children.

That I won’t ever get married. I won’t be able to have kids. That I won’t be able to give my family- my dad grandchildren. And that one day, I won’t be here anymore. That’s what I fear the most.

If she was able to change something in the past, it would be to find out more about the man she was seeing at the time and to use more protection. Yet, she knows and have accepted the fact that you can’t keep looking back to the past to see what could be changed. Shorty now looks to the future and makes sure that whatever she does in the present has a positive impact on what happens next.

Well I would’ve been more cautious on condoms. I would have done more research on the man that I was dealing with. I would have done more to protect myself. But one thing that I have learned, that is my past; this is my present. I can’t change it, what I can do is make my present better and to see where I can go in the future.

In the beginning, Shorty couldn't talk about her diagnosis without feeling devastated. Slowly, she started to accept and understand that she was HIV+ with help. She can now talk about it without feeling like she is tearing apart on the inside.

I mean at first I would not talk about it at all. I would avoid the whole entire subject because I felt uncomfortable. I didn’t want to deal with it. Like I said when I went to my therapist-- how can I talk about something if I can’t deal with it first. And it took me a while to deal with, like I said I was hurt, I was devastated. You know, I’m like why me. But at the same, it’s not why me, it’s now that I have it what am I going to do? I can either keep letting it tear me down or I can learn from it and build myself up. And I built myself up. And at the end of the day nothing is going to change because I’m still going to be HIV positive. And that’s not going to change so I had to figure out what to do and I did so it’s what I have and not who I am. And that’s why I tell people, don’t define me as being HIV positive, define me as the person that I am not for the disease that I have.