Ethnographers:
Eric Perger
Cassidy Buckley
Upon walking into Chris’s hospital room, one is handed a yellow disposable suits to wear. Chris’s tone goes from excited to slightly annoyed as he sees the hospital gowns given to us by the nurses. He makes a comment about the nurses’ ignorance pertaining to his diagnosis and how HIV isn’t transmitted through the air. Chris then started to tell his story beginning with himself and his childhood.
I grew up in D.Y.F.Y.S., that’s one. Supposedly when I was born I was diagnosed with cocaine in my system, [so] D.Y.F.Y.S. stepped in and took me. I moved from place to place, group home to group home, independent to independent, foster home to foster home, shelter to shelter. Then as I got older, I started doing my research on my real family, [and] reunited with [them] in 2010. Then, after I graduated high school, I attended Penn State for business management. I completed that. I recently just went back to school to do, cosmetology [and] I graduated from that and now I do plan on going back to school in January to be a Registered Nurse.
It seems as though Chris had a pretty rocky childhood. He doesn’t resonate well with a lot of his peers, he reiterates that he’s not a very sociable person many times.
I don’t have friends, I don’t like other people. Besides my college friends and my frat friends, that’s it. Other than that, I don’t mess with too many [people] it’s very hard to trust certain people. I just feel like as I got older I can’t give everybody my trust because everybody’s sneaking and conniving. Or they do things behind your back.
Trust is something that Chris severely lacks, and with good reason. His efforts in trying to trust people have backfired on him every time in life.
...When I [was] diagnosed [with HIV], I got diagnosed from a tattoo. Me, being young, drunk, and dumb. I was at a frat party and I let someone do my tattoo. It wound up getting infected and it was bad to the point where I was like catching like fevers, [and] chills. I started doing my research, looking up things, ‘cause I know I was always the type of person to carry condoms, no matter where I [was, I] always use protection, so I know [unsafe sex] was never the [cause of my diagnosis].
I went to the hospital in Vorhees called Virtua, and they told me what it was from.
Chris rubs his hand over his forearm, exposing a very faded tattoo.
It was actually this tattoo right here. When he did this tattoo, [it] was so bubbly. It looked like blisters [were] all over my arm [and] I asked [the doctor], ‘What could it be from?’ and he was like, ‘Who did your tattoo? Did you go to a shop?’ You know, I said, ‘Well, I was drunk and I went to a friend’s frat party and just got it done there.’ And he told me well that’s the cause [of my HIV diagnosis]. [That’s when] they started cutting, taking tests, this and that, just to figure out everything. Now I’m stuck. Fighting for the rest of my life.
As Chris looked at the floor, the room fell silent. He spoke about his struggles in jail.
Well when I first found out, [I was] incarcerated for fighting. So, in jail they stick you in your finger [during intake] and [when] he stuck my finger and he told me I have [HIV]. I’m like ‘nah,’ [and] they told me to come back to the nurses office, I’m like no, ‘it’s not real, it’s not real.’
You could see the sadness filling in his eyes as he talked about his first year with the diagnosis. He spoke much slower; in a very low tone.
The whole time I’m in jail my arm is blistering up. I’m like, ‘no, this is not it. This is not it.’ I cried...I cried like I always do. You know, I wanted to end my life at one point. I felt like no one was going to ever love me for me. I felt like my life was just over.
The room felt heavy and the silence became very loud. It was evident that it was an extremely rough period of time for him, but he continued his story of resilience on a much lighter note.
But then, I got used to it, and [realized] I’m not the only person with shit like that, there’s people out there [that are HIV positive]. Like my roommate. My roommate’s 42. And he’s had it for 26 years now, he’s been a big guidance for me with that. But when I did find out, I felt like my family wouldn’t care about me, but the end result didn’t turn out like that.
Chris tells a beautiful story of self and peer acceptance, reminding us that a lot of people have the same struggles in their daily lives.
It took a while. It took a while. It took about a year before I fully got eased with it. I used to sit in my room, all depressed. I would go days and days without eating, I’d go months without eating. It was like a big reality wake-up call, you know. Just something I have to live with for the rest of my life. Like I said, I thought nobody would care about me, I didn’t think I’d catch [HIV], and all I thought was ‘oh, I’m going to die, I’m going to die’-- everybody thinks that. but I do take my medicine. I make sure I go buy my vitamins, I have multivitamins just to treat myself the right way. And that’s that.
Chris admitted that some days early on were much harder than others.
When I found out, I felt like no one was there for me and I just started to shut the world out. One time when I did try killing myself, my sister told me, ‘You’re being selfish, you got family that love you. You got nieces out here that look up to you.’ And then that started clicking in my head. I’m like, you know what-- she’s right. My nieces are 9, 10, 11, I let them know what’s going on with their uncle, Uncle Chris is very sick. They always want to know why I’m in and out [of] the hospital. Sometimes my niece will call me just to ask me ‘did I take my medicine?’ My niece is 10 years old. So, for my nieces to do things like that, it’s a big wake-up [call].
Chris touched upon some of the medicines and doctors he dealt with during the initial first year diagnosis, tying into his theme of a lack of trust.
Well when I first found out I was going out here, to the health plex, I was seeing Dr. Jones. She was giving me medicine that was [messing] me up, it was messing with my kidneys. I caught a mid-stroke with the medicine she was giving me. She gave me Bactrim [and] I kept telling her I was breaking out from it. My back broke out from it, in all hives. I kept telling her-- Tivicay-- I was breaking out from that. She was giving me antibiotics to go with the actual medicine, so, as I’m taking certain medicines I’m realizing, certain things [are] happening to me. Some days I’d just take one pill out of all the pills. Just to see what would be my reaction, my body reaction. Maybe that pill’s messing with me. When your pharmacy doesn’t cover Trimec, they give you two pills to make [up for] that one pill. That’s what I was originally taking, and, like I said, I was messed up all around. At first she wanted me to see a psychiatrist and I told her, I’m not seeing nobody’s psychiatrist. I told her I used to take ADHD medicine, she wanted me to get back on my ADHD medicines. I told her I’m not getting back on them, I was weaned off of them as a child, I refuse to go see a therapist to get back on them. I’m telling her what’s going on [and] within a week later I caught a mid-stroke, at home. It was about 4 o’clock in the morning. I got up to use the bathroom, my feet [went] numb, my hands went numb. Now I’m laying on my bed, but my hands are starting to tense up, like this. (Chris tenses up his neck and brings his arms to his chest.) My whole side, my neck started to droop, I felt like a baby T-rex, basically. Eventually I’m laying in bed and I started getting stuck like this. And then I started to drool, it’s funny when I think about it now, but, I [could’ve] really been stuck like that. And when I broke it down to her I cried and everything, if it wasn’t for me banging my head on my roommate’s door, going on Google, looking up symptoms of strokes-- I was in the midst of catching an actual stroke but I caught it [before it got serious]. So I banged my head on my roommate’s wall, ‘cause my roommate sleeps next door, I’m banging my head, he comes in there like, “Chris, what?” and I’m like, ‘I’m talking with a slur, I think I’m catching a stroke.’ He like, ‘Boy stop playing.’ Thinking I’m playing, I’m like ‘I’m not playing with you, I’m dead serious, I’m stuck.’ He was like ‘Okay, just go to sleep and wake up you’ll be fine.’ (laughs) I said ‘No,’ I said, ‘I’m serious, I can’t feel my hands, my feet’ He said, ‘No you’re playing, just go to sleep.’ He turned my light off and walked out.
Chris was literally dying for help, but having someone ignore him was something he had unfortunately grown accustomed to in his life. So once again, he had to fight for himself.
I banged my head again, I called 911 at the time, I [didn’t] know what’s going on, I just know I’m in my bed. They put me on a stretcher, I had an IV here, in my leg. (He points to his leg.) I got an IV here in my leg, in my neck, on this side, and I had an IV in my arm. When I got [to the hospital] my body was tensed up. I thought I was going to remain stuck like that. When I finally got out of my stroke and went back to tell [the doctor about it] her exact words [were that] she, ‘discharged me from her system.’ So, that’s why I said I don’t really trust certain doctors, because of reasons like that. For her to discharge me that easy knowing everything that just took place and you giving me messed up mixtures of medicines that’s messing me up, it’s kind of messed up for you to just discharge me. So then I started doing my research of top notch doctors in the United States, out here in Jersey. And I’ve decided to go to Garden State which is Jefferson, over there, in Kennedy health plex, and that’s now who I go to-- my doctor’s name is James. And ever since then, my doctors been making sure I’m good. Anything I need, any refills I need, you know. Everything is confidential of course, they always call on me to make sure I’m good. That’s something that they points to another hospital out the window would not do. I would have to go to the office or call the office to speak to the therapist, the therapist now would call me like once or twice a week just to check on me. I got a social worker to make sure to text me to make sure that I take my meds, you know, things like that, when someone is dealing with a situation like this is still a matter of [needing] that guidance, ‘cause not everybody knows how to fully take it. When I first found out [about my HIV], I was like I’m healing, I’m not taking no medicine. I have to deal with her [the doctor I don’t like]? I said I’m not taking no medicine, I’m not dealing with [any] doctors, but now my new doctor’s got me. My doctor is always making sure I’m good. That was the only doctor I had to deal with. When I found out [I had HIV] I was in jail, and I was living up here at the time. They stuck me in my finger, I called my roommate, my roommate referred me to that doctor because that’s who he goes to. But not every doctor is meant for everybody, you know what I’m saying? I won’t go there, I won’t even step foot in that building. I won’t even step foot next to the building. ‘Cause if I step foot next to that building I’m going to go in there and I’m going to tear it.