Ethnogrophers :
Tajhisha and Anne
“You get to a place where you have to rely on God, your higher power is always there. My spiritual aspect in life is the greatest achievement because it has helped me to understand what’s really going on with my life.
Jeri met us in front of the elevator in Atlantic City at her apartment on Friday November 8,2019 from 3:10pm to 4:00pm. She was wearing a long black shirt with blue jeans, leg warmers and her slides. She smiles as she greeted us and then got on the elevator to her apartment. The setting was very peaceful and beautiful with a view of the ocean from her apartment. We sat at a table in the kitchen and began our Interview after talking for a few minutes.
I was born in 1958 and lived with my family in Newark, New Jersey. After the riots in 1968, my family moved to South Jersey in the early 70s and settled in the town of Richland. I attended Buena and Millville high school. I moved to Millville and had a daughter and worked for the Vineland state school for three years. I worked as a craps and roulette dealer, and cocktail waitress in Atlantic City casinos from the 1980s to 1997.I Left the casinos in 1997, and worked as a supervisor for a store in Mays Landing, NJ. Also, I moved to California in 2011 and return back to New Jersey in 2018.
Jeri began her story of when she found out that she was HIV positive:
I found out in 2008 that I was HIV positive when I went to a doctor appointment and had an examination. The doctor told me to come back for a follow up appointment. When I returned, the doctor told me that I was HIV-positive. He asked me how I contracted it, and I told him it was my husband. At first, I was in denial and that continued on for many years. I did not take any medication for 10 years. My religious I beliefs kept me believing that I would be healed from it. I wouldn’t ever talk about it, would not approach it, put it on the shelf, didn’t want to deal with it. I shut down and became depressed, didn’t know what I was going to do or how I was going to do it.
Jeri was shocked and couldn’t believe she contracted HIV from her husband, so she decided to get divorced. Eventually she moved to California and lived with friends for four years.
My immune system became weakened. I wasn’t feeling good and getting colds a lot. I started taking the medication things change drastically. I kept pushing myself because it was mental, mind over matter and had to get up and do something. I didn’t feel sorry for myself saying poor me why did this happen? It was time to fight with everything I had in me. I kept taking the medicine to see what would happen, continued on walking and do the things that I would normally do. Even when I was in pain, it didn’t stop me I kept pushing myself, even at times that I didn’t want to. I started feeling that way when I had the stroke in May of this year. I realized that you have to shit or get off the pot. Had to do something, said to myself “do you want to die alone with secrets about my health that the family didn’t know about can’t leave them like that. Me and God are going to work it out. If I need ya’ll then I will call them if I need help. Guess what I am going to be sick, as far as I’m concerned, I’m going to be fine. Yes, I am the one! Ding ding ding!
I didn’t tell anyone for ten years, but now the family and grandchildren know. Recently this year May 2019, I was hospitalized and that’s when the family found out I was HIV positive. They wanted to know what happened to me and why I was sick. The first person I told was my oldest granddaughter. She was upset and angry towards my ex-husband. I was in denial and didn’t want to tell anyone what happened to me. My family’s response when they first found out was they excepted me with open arms and did not judge me because they know my life. They were angry and wanted to go after my ex-husband and I said we’re not going to have that.
Recently I started going to therapy and that has helped me to learn how to disclose my illness to people in my life. I tell them that I’m HIV positive and at the appropriate time. People who need to know, I tell and nobody else needs to know. I’m no longer ashamed or embarrassed about it because I have come to terms with the truth. My faith has been very important to me. I know I will live and shall not die. I have faith and hope in living a long and prosperous life.
Jeri has a strong connection to her faith as she talks about it being very important to her life and her wellbeing, she taps on the table with her fingers.
I started doing a lot of research on the disease and learned precautions to take. I started taking medication in June of this year, five times daily and test results show the viral load is undetectable. You get in a place where you have to rely on God. Go to your higher power he is always there. My spiritual aspect in life is the greatest achievement because it has helped me to understand what’s really going on in my life. I had a stroke this past spring, and didn’t paralyze me. I can still get around and be independent, shop and cook my own meals. I’m more cautious about doing things and more health-conscious now. I was always very busy doing things such as walking, ride the bike and going places. Now I can only walk a half a block and have to stop because of pain. I’m Currently having tests done to figure out what is causing the pain in my leg.
You know in the Bible, David encourages himself. That’s what I’m going to do, encourage myself. I live alone, eat alone, I’m alone, and that’s good. I learned that being by yourself, you’re working on your situation and working on who you are is good. Sometimes it’s good to be alone, it really is. It’s a blessing if you read the Bible. It’s a blessing to walk alone. I can figure it out, and that’s what I’m doing, figuring it out. Every day is different, I wake up in the morning and say “ok hey, what’s it going to be today? Doing a lot for me as health, thank God I have my medication I can get it because there’s a lot of people that can’t.
That’s where I’m at with this. My life is easy because I have means to get the things that I need to help me to survive. Medication is number one. They don’t get to ask me if I’m going to take it. Oh, I’m going to take it because I want to live. But think about all the people that don’t have medication, that are in denial. These are the people I’m trying to reach. The ones that don’t have medication because the question is for me now. What does HIV look like? What does it look like? The way it is with the numbers, the stats. A lot of people have it! people are talking about it and a lot of people aren’t doing anything about it.
Jeri talked about the challenges she has endured, the importance of reaching out for help in the community, and being involved with local groups in Atlantic City.
I start going to the meetings and reached out and went to CLEAR. It is an organization, I have a counselor there that I have been meeting with every week. It was helping me because I was emotional in the beginning and had a lot to get off my chest. I didn’t realize after all these years have passed, but I’m still angry, still angry. I’m very angry. Know what I’m saying. Who the hell wants to be sick. displays emotion, becoming upset” just knowing that I have to be very careful. Take precautions when I go outside. I can’t go out with nothing on. I have to protect myself. I have to be careful, you know what I mean, with people coughing. I don’t work now because of the stroke, but I was a supervisor in AC for a year then had gotten sick. My cognitive skills were off, [ I] couldn’t remember things, like how to write down everything. As a supervisor had four people working under me and was responsible to have a plan in place, just couldn’t do it. Be able to be responsible, for others and the game plan for the job. It’s a lot of work how to be able to be fortified and equipped. Worked at the job when I returned from California last year. Out there for four years and now that I do not work I’m doing other things. “Other things have opened up now, things have switched. In a place where I’m learning everything that I need to learn to be an advocate. I will be going to Washington DC fight, be an advocate because people need to hear. Need to know that the bottom line in order to eliminate this. Yep the programs, information, help people with housing, once you get that steps you got to make sure you taking your medicine. That’s very important even if you don’t want to take it, you got to take it sometimes I don’t want to take it.
Jeri talked about some current medical conditions that she has been dealing with and unsure if it was side effects from the medication.
You know I wake up every morning, I go to my medicine cabinet take my pills. I take like five pills plus have high blood pressure. Because I wasn’t taking both my medications everything was going to shut down if I didn’t do something. Needed to do something. So now Kind of got it even. I really do, I’m taking my medicine. I don’t know if it has something to do with my circulation so that’s what getting tests on now. I put pressure on my legs because my legs cramp up. I don’t know if it’s from the medication or not. They’re working on it. Went to my doctor last month and wanted to say I’m not taking medication anymore because can’t walk starting to feel bad. The doctor said oh you can’t, oh you can’t, you can’t stop taking it. Jeri you can’t do that. The reason why I didn’t know my viral load was undetected. If I don’t take it, it goes back up. So right now, it’s being managed by the medication.
Jeri mentioned the importance of the meetings with everyone sharing their stories about living with HIV and the stigma of it.
I go to CLEAR; it is right around the corner for HIV anybody. They have meetings on the third Wednesday with AIDS alliance. I go to two meetings a month. They are trying to schedule more meetings, but again stigma of people not wanting people to know that they have it. Everybody shares what they are feeling. That’s why I went because, I wanted to know how people were living with this, because I have it I need to know how to live. I get so much feedback from different people, because of whether their medication is not working, If there’s new medication out. What they’re doing about that and it’s very interesting. “I feel as though again, you have to look, you know. The one thing I don’t want to be is a guinea pig, like take all this medication cause you got to understand it effects your kidneys and stuff. I have to be careful. You got to be careful, so my medicine works for me now. I don’t know where the cramps are coming from in my legs, but from the testing will be able to tell me if the circulation is bad or whatever is going on. I’ll know, just finished taking a test last week. I’m doing all that I can do, you got to do all that you can do. Don’t leave no stone unturned, turn them over, look at it, Research it, ask questions, talk about it. You know what I’m saying. People that are in your corner, you know for me I don’t care. I’m strong, that’s what I do know. So, I really don’t, it’s not like a big thing. Look I don’t care who know what. It is what it is. So what! and, and, and what are you going to do? But if I say I don’t do nothing, I get nothing.
Hands closed that’s it. You know what I’m saying. I’m so sure I’m going to run across somebody that’s going to be negative about it along the way, but guess what. It doesn’t matter I still love you, well I got to go cause you’re not helping me. Any negativity, the one thing I want to say, any negativity that comes. You got to hold it out the way. You cannot let it go into your system. I don’t have time! It’s about living, it’s about living Its about living. If you don’t have anything good to say, don’t say anything. Thank you I appreciate it. I still like yaw, that’s the way it is. This is a fight. My immune system is fighting all the time, all the time. You know I was up in the air About getting a flu shot. You know what I’m saying I don’t want to put bacteria in me that I don’t have. What I mean because my immune system, I thought about it. If I don’t get it and I get the flu and I get really sick. So, I’m going to take the flu shot. Yeah because I wasn’t and I kept asking my doctor. Going to make me understand why I have to take it. They were like well if you don’t, you can get very sick. I just don’t want to weight my scales like that with my life. You know what I mean. This is what I want people to know, I did everything that I humanly possible could do to.
Combat dis-ease is what she refers to it as.
Combat disease. I don’t feel like I have a disease. I feel as though it’s a dis-ease. Meaning I’m not putting a lot of emphasis on the disease itself. Its uncomfortable all the way around. The dis-ease is uncomfortable. It’s uncomfortable because I’ve got to be careful and the way that I eat, got to be careful the way that I dress, with my age. Got to be careful that’s where the ease is. That’s how I came up with it. Because I just want to get older I got a little aches and pains, but nothing like this! Nothing like this! You know you’re going to worry about being careful around my grandchildren and great grandchildren they are small. I had to make sure I protect myself from them so they don’t get anything, you know a little bit of blood if I cut myself. I got to be careful, I got to be careful that’s what it is. So again, knowing how you can give it to someone is very important. You have to know the insides and outs, so that way you can protect yourself and protect others.
It’s very important. I don’t know how you can contract it. My counselor was breaking it down to me how you get it. I was like oh it was from my husband. You can get it from drugs, blood from transplants. It’s very complicated. Yes, you got to know. Many people don’t know the real foundation of it and how you can contract it. There’s a law that if you know you have it when you give it to somebody else you can get locked up.
Jeri explained that she wants to be an advocate.
“I want to be an advocate” I been studying all the laws and learning a lot. Teaching myself how to lobby with the people that I’m working with. They were from New York. They have been working for many years lobbying. An instrumental in changing laws. Teaching me to know the lingo ‘s gestures and body language. Stressed how important it is to be of service and help other people. Explain it’s not about you it’s about a group of people fighting for the same common cause. My mission is to be an advocate and be a voice for the people who are not heard. I’m involved with a group that lobbies in Washington, DC. Their platform is to bring awareness of the importance for people to have adequate housing and access to medication that is needed for HIV.
She stated that the only way she keeps healthy is through balance and proper nutrition and by staying active doing and not just being stiff.
I eat right, takes my medication, walks for good vascular circulation. I eat daily food consists of vegetables, grains, beans, a little bit of pasta. Sometimes cheese cabbage and beans another green vegetables. I walk around Atlantic City to build up strength and stamina. Keeping a balance is very important can’t go too far to the left or to far to the right.
Even though Jeri says she doesn’t talk to anyone but her children and grandchildren, and doesn’t really have any friends. She does however go to group therapy.
I attend group therapy twice a month and another group in Atlantic City every two weeks the group is men and women of all ages. They talk about support for each other. It is anonymous . They discuss government programs and lobbying policies for HIV. It’s important to have strength in numbers to present the issues such as housing, location, making things affordable for people. People perish from lack of knowledge. This can cause isolation, shame, and guilt. I want to have a life that is productive and not a sickly life. I was emotional in the beginning and had a lot to get off my chest. I didn’t realize after all these years have passed, but “I’m still angry, “still angry. I’m very angry, know what I’m saying. Who the hell wants to be sick, I just know I have to be very careful. But I like to maintain a positive attitude. Sometimes to take steps it can be hard but must be determined to do so with a positive attitude.
Jeri spends her days doing a lot of things, including meeting or such as working on personal things.
I start my day getting up at 5 AM and pray asking god what his will is for the day. What am I supposed to be doing? I attends meetings and my calendar is full. I works on personal things and sees a therapist once a week. I’m working with my therapist putting together a five-year plan of goals where I wants to be in my life. As long as I do the footwork for staying healthy, that’s the biggest component in the battle. Take the medication with my other medication and vitamins too. I haven’t taking my medication for a long time and now taking the medication brings a lot of hope. Some health issues started the past few months and recently the left side of my neck and throat were causing some pain. I’m under the care of a doctor and having tests done. When I goes out I have to make sure to wear warm clothes and take care of myself. I encourages other people and it’s important to be prepared for when things turn up in life. I have to clear my mind. A daily regiment of meditation is an important part of my life I listens to music and looks at the water from the window of my apartment. This gives me peace I enjoys watching the sun rise up and go down. You never know what’s going to happen when you wake up. “It is important to be grateful for the little things, they are the better things”. Less is best remember that. When you don’t have a lot of situations in your life it’s less, because you can think. You have room in your brain to think, but if you have millions of problems that’s hard to think.
Jeri didn’t have to deal with rejection from people because she didn’t tell anyone about her disease, except for those who were close to her.
There is a stigma with having HIV and sometimes you don’t know how people are going to react. What was important was to tell the people who matter the most. I told a couple of friends, my sister, and brothers. My father doesn’t know he has dementia. I didn’t have to deal with rejection from people. You’re going to be rejected all your life by somebody haters or whatever. Not a big thing to think about. If it’s not positive energy it’s negative, you need it anyway. What God says the word is serious. Spirituality is keeping me, I knows the word. If you say to yourself, you don’t feel good then you won’t feel good. I’ve have seen rejection towards other people. Many others shared stories and I have heard about people who weren’t able to tell other people. I tell the people that you love the ones who will be there for you those the ones you need to tell. I keep it private, I have no shame with it. Its not about my personal story, it is about the story of all of us, with one common denominator. Getting things done because everybody’s affected by it. It doesn’t have to be that way for real, for real.
Jeri talks about her relationships with her family and how she learned more information about her disease.
It is a very interesting topic, my relationships now that I have disclosed my dis-ease. My relationships are closer, believe it or not. My thinking of what people would think because I had the virus. How they would react, and how would they be toward me with my grandchildren, would they not want me to kiss the grandchildren or can’t drink behind me so, I had to learn the education about my disease in my life.
What I’ve learned people perish for lack of information. Then I learned how to work on it. Getting better is taking my medicine on a daily basis, I can’t forget it, I can’t forget it something I got to take it. My viral loads are low so my HIV is an undetected. If they took my blood they would see that it is not there but, it is there so this is why I work on eating properly, eating organic chicken today. It is all about the health. The immune system gets attacked and gets attacked. What I’ve learned scientifically is that the virus mutates. The mutation means it changes forms so, the HIV that I have now does it mean the HIV which is to come, that is what I know to be a fact. It is about prevention that’s all right with this. It can be illuminated it’s about speaking on it talking about it to your family and loved ones it’s very good that you’ll be able to talk to your family about it because at the end of the day you have your family to help you along the way. I really appreciate this because the way you’re speaking out about it. Serious I’m living my life my best life regardless of how I feel the one thing I do know is that I have a good life so does my family. So far, my family is growing closer and me and my daughter have a relationship that is close I can sit and talk to her we couldn’t do that before. So that happened and my son I really don’t have a relationship with my son. Me and my son had an argument so personal for me it was also legal I’m just going to say that leave it alone. Take some things didn’t belong to him so I was not pleased it was just respect bottom line disrespect. I said some things, then he said some things. At the end of the day it’s disrespect. I’m your mom. Other than that, I’m living my life, my best life, regardless of how I feel the one thing I do know is that I have a good life so does my family.
Jeri discussed how her family knows, about her disease now, and how she now speaks about the virus.
My brother knows, my sister knows, my daughter knows, my grandchildren know. The great grandchildren are young, they will know eventually. I don’t want sympathy from people I’m going to be honest with you, this is kind of a blessing believe it or not. I got to live the life I like to live without no cost. I don’t have to worry about it being a financial situation. The people that I met these things are very interesting. The AIDS alliance working with them I could have never did that meeting the legislation. I can fight with my mouth legally are you serious I can legally fight them there’s some things that need to be done on these thing you can take care of these things it’s real simply take your housing, medication if you could take care of the awareness. Things are important to call yourself an alliance or whatever you do it is simple. We the people feel like you’re not doing your job. Everything is about money that’s from what I learned about some money in a power thing you know you’re talking about don’t give up keep giving back. Put myself out there didn’t have to, I want to but, my thing is what is the face of aids do you know who has it how can you tell, you couldn’t that’s a question you got to ask yourself they can look good look all the way well you know I don’t care use protection I don’t care who it is I don’t care at all. At times you don’t give yourself room for that one night to your life that will cost. You got to care about yourself I didn’t think about that, I had a husband never entered my mind so that’s why I tell my story. It never entered my brain I didn’t expect this, it was an unexpected thing and now so what you going to do. It is what it is you going to stop living, stop doing, stop being who you are, what you do with your life. I got to do something so it looks good just want you know that when I leave she’s be all right. She could talk to anybody about anything at any given time anytime.
Sometimes I do, I think about it. I think about disease itself, what it’s doing. What about the people don’t have an occasion where they live in? Who’s living your life when I talk to people that are like me see how their life is going what they’re doing that’s why I go to group how are you feeling what are you feeling are you achy. There’s a guy there, goes to the group has the same symptoms that I am, I say what? Dealing with my giving him the information going to every doctor, getting every test are you serious Every doctor Walking to something I’m having a problem with right now. I love walking so I’m having a problem with, don’t want a scooter, it’s not cute. Working on my legs right now circulation problems that I have to find out what his circulation problem in my legs. My relationships are goodbye, the one thing I want to say this is important for me not everybody knows just the important people to know That’s family. Everybody else I don’t care I don’t know you what you’re doing for me That I need to be concerned about. I’m just doing me I’m fitting to who I am and put into who I am, How I feel right. Right is right wrong is wrong do the right thing that’s it loves yourself love your neighbor that’s it that’s all I can do. If I can be a blessing to you on the way that’s what I want to do that’s it that’s it that’s how it is.
Jeri discussed how she loves the view of the ocean from her home, and how good it felt to see us. She also discussed and how she was very upset about the doctors not giving her no answers about her health.
Look at those fine guys, I have the view of all view’s surfers! Beautiful, I can’t ask for more, see the sunrise, sunset and see the dolphins in the morning yeah that’s the ocean that’s the ocean. They come up on the side of the building so you have to look out to see him jump up in the water but it’s neat experience. As far as I’m feeling, it’s good to see you girls. I appreciate that, I was so upset with the doctors about my test. So, the doctor just gives me something tell me something am I OK to have to eat something different than what I got to do hello somebody are you hearing me, read the test .It is the process of all the testing I’ve had an EKG, echo cardio gram, took tests on my heart and my legs done scope my legs do little things like suction cups pressured my legs see how much pressure is going in the blood flowing through. Where is the blockage at? Is it in the arteries of my heart? You know how my heart is. It is good I believe it’s a reason why I was put here, anyway, and she’ll be kept so I can finish the mission. Not every day moving around every day catch a bus I’m going here going there. It is a little bit much but the good thing is all the places I have to go are at the Plex so my doctors are there. Specialist I have to go to Pomona, Egg Harbor township. Another doctor is in Atlantic City. We will see what the cardiogram has to say. Think my ticker is ok. I just hope so, feeling ok besides my anxiety it’s a big thing being able to lower myself with the anxiety get angry it’s not normal I tell myself. They are just doing their job if you don’t tell me where I need to know then you’re wasting my time. I got to go directly to the source of the situation is very important. Information is everything it’s power we got information you could power move anybody. Somebody’s got to do it why not me why not me really just take it one day at a time. Most days are good still when I got to do its good see what I want to see good contact with the grandchildren great-grandchildren they come over they were just here. All five of them last week.