Say What

Submitted on Jul 1, 2024 by  Healing Hope

As part of a collaboration with our longtime partner organization Christie's Place, The Well Project will be sharing stories from their book "Healing Hope: A woven tapestry of strength and solace" as blog entries on our A Girl Like Me platform. The views and opinions expressed in this project are those of the authors and do not necessarily reflect the views or positions of The Well Project.


**Content Warning** This piece discusses child sexual abuse by a family member, intimate partner violence, suicide, and the loss of a child (resources available at the bottom of this page)

If you need help, call The National Sexual Assault Online Hotline in the US at 800-656-HOPE (1-800-656-4673). You can also find resources and get help online at RAINN (https://rainn.org). If you are feeling threatened right now, call 911 or the National Domestic Violence hotline in the US at 800-799-SAFE [1-800-799-7233; or 1-800-787-3224 (TTY)]. You can also search for a safe space online at Domestic Shelters (https://www.domesticshelters.org/).

 

by Jay Reed
Transcription of Audio Recording
Lea este blog en español

Image

Colorful illustration of Jay with butterflies and flowers all around her.

Illustration by Lena Gacek

My name is Jay and my journey with HIV is…I guess it started way long before the diagnosis. I think I started using drugs when I was 12, the year my father died in 1980. I started smoking weed and stealing my stepfather's weed when I was in the seventh grade. I think that's important because it's because of my drug abuse that I contracted HIV.

My addiction got progressively worse. Weed, alcohol, crystal, and then ultimately crack. I had a couple of traumas or traumatic events that happened when I was a teenager. I was molested by my stepbrother when I was 12. Maybe 13? I didn't really know I was molested because he did oral sex and it felt good. It wasn't consensual, but I thought that since it felt good, it was okay. When I got clean and started working on filtering my life, I realized that he was an adult, and he had no business touching me at all.

Another event that happened was when I was 16. I got pregnant and had a miscarriage. I had a fight with my sister. She was taking my niece out of the city. We didn't physically fight, but I was trying to stop her and that's when my water broke at five and a half months. My baby was stillborn. What made it worse was we had to go through the whole burial shit as if it were a live birth.

Following these events, I was using the substances all throughout high school. I always slept around. I always was seeking some kind of validation or love or something. Using drugs, I made bad decisions. I've always made bad decisions in my life. When I was 18, I got pregnant again. The dude I got pregnant by got married a few months after I found out I was pregnant. The baby I had was premature. I had her at 6.5 months. She only weighed two lbs. She had a heart condition when she was born so, at five days old, she had to have open-heart surgery. She was in the hospital for about two months. Her name is Ja'Tessa Monét. My mom was a trip, she later put us out. When I brought her home, she was on oxygen. It was me, her, and an oxygen tank everywhere. My best friend's family took us in and eventually got me and my best friend an apartment.

When Ja'Tessa was five months and thirteen days she caught a cold. I took her to the doctors, her pediatrician, and they told me not to give her milk because of the mucous or whatever. I didn't have anyone to help, guide, or teach me what I should have been doing. So, I stopped giving her milk as the doctor said. Instead, I was giving her Pedialyte and juice. One day my brother came to visit us and realized she was hungry and fed her some baby food.

I took her back to the doctor, and they said I must take her to the hospital right away. I took her to the hospital, and she didn't wake up. They sent her to Loma Linda and she died. In all actuality, the reality of it is, I killed my baby because I didn't feed her. Because I didn't know to feed her. So, she died. I didn't have any money. My mom was a welfare worker, so I couldn't get services at her office, so I had to go all the way to Palm Springs. I didn't have transportation; it was just a fucking mess.

So, when she passed away, that was my income. There were some guys we knew from San Bernardino who came to live with us. They helped with the rent by selling crack. They used to cut up their dope and leave the crumbs for me. There would be a plate full of crack. That's when I really got into smoking crack and the streets. I basically said, "fuck it". That's how I got out there. I was 19 and didn't care anymore. Just wanted to be high and drink so that's what I did. I always caught STDs. I was a prostitute. I was a Strawberry which was a crack hoe sucking dick for a hit.

I'm constantly educating people. People that should know, don't.

There were a couple of gay and bisexual men I went to church with who had contracted HIV and died. There were three or four of them. I never thought I was at risk.

I tested a couple of times in jail. I tested negative twice. But there was this guy that had AIDS. He was a junkie, and he had some dope. I wanted to get high, and it didn't matter what I did to get my dope so I slept with him. Is that when I contracted HIV? I don't know. It could have been anywhere along that journey.

I went to prison back in '93 and '94. I got out in like November '95. After the violation, I thought, I have to change my life. I don't want to do this anymore. So, I moved with my sister. Everything was going good! I had a job and had eventually got my own place. Then I got sick. I couldn't eat or drink anything, it would hurt so bad. I had to force myself to get food down. Even ice would hurt! I lost like, shit, 50-60 pounds in two months. I would go to the doctor, and I would tell them my drug and sexual history and they would treat me for ulcers. I was given whatever the ulcer drug was at that time. This was in the beginning of '96. I went back and forth to different general practitioners. Eventually, mama took me to the emergency room because I was so sick and wasn't getting any better. Nobody mentioned the HIV test or anything like that even though they knew my history.

I was just really sick. They gave me Bactrim at the county hospital in San Bernardino and I had a really bad allergic reaction to it. When we went back, there was this young intern who looked in my mouth and asked, "Has anybody offered you an HIV test?" He said it looked like thrush. He informed me they were giving me an AIDS test. They put me in the hospital and the next day they came and told me that I had a T cell count of 116 and that was considered AIDS. My reaction was, "Oh, okay. Now I know what I'm dying from." I didn't understand what the T cell count meant or anything like that, but I just knew I was dying. I felt it, you know. I stayed in the hospital about a week.

It was a county hospital, so there were about six other women in the room. It was awful. I moved back home with mom to die. I started going to the Desert AIDS Project and this Nurse Practitioner told me in no uncertain terms that I would not make it to the end of the year. That was March of 1996. We were just preparing for me to die. I was on so much freaking medication. I was chewing up Videx, I was taking injections for my white and red blood cells. Poppin pills, AZT and whatever else they gave me. That was the year the new HAART regiment came out. I would go to the doctors every week. I would do labs every week. I just didn't understand why I had to do all of that if I was dying anyway. I couldn't keep anything down and what I did keep down would give me diarrhea.

It was right around the time they started talking about medical marijuana, in '96. My doctor was talking to me about it, but he said he couldn't advise me to smoke or use the products. I had a conversation with my mom about smoking weed for medical purposes since I had stopped using when I got out of prison. She agreed. She wouldn't let us smoke weed in the house before, but every morning she allowed me to smoke before I got out of bed. I would smoke a joint and it was life-changing! I started feeling better. I was feeling more energy. I was able to eat. Then I started the new medication. I don't remember what it was, but it was also life-changing. You know, it literally gave me life!

I would go to the hood and talk to everybody. I found out when the county was testing in Indio, and I would go to see if anyone wanted to get tested. Since it happened to me, someone else probably got it too because we were all fucking and sucking each other. I disclosed to people right away when I was able to get up and out. I think I told my granddaughters' grandmother first. She had asked, "What’s wrong with you? Are you sick? You are so skinny." She knew I wasn't using, so I disclosed to her. I talked to the dudes that I was messing with which included the dealers and other people I smoked with. I was the first woman to come out as having HIV in my small community. I knew there had to be others.

 

I tell my story because women need to know. They need to know they are not immune to contracting HIV! Are you having sex? I don't give a damn if it's your man of 20+ years. IT DON'T MATTER.

 

Eventually, I started using crack again. When I was living with my mom, I started selling dope. My boyfriend at the time was sneaking and smoking. One day, mama's air went out, and I went and got a hotel. That night I relapsed. I was on a journey to die. I held on to the words, "You're going to die". I used that to fuel my addiction. I was being reckless even though I always disclosed to people before we had sex.

When I met my husband, I tried to normalize my life even though I was still using. We would drink and fight. Makeup, drink, fight, and makeup. It was just chaotic. Never a dull moment. We got married five months after we started dating. He had always had a crush on me, all through high school. I didn't even know who he was, but I thought, "Damn, he loves me." I married him because he loved me and I loved him for that. We tried but it was just toxic and abusive. I wear a scar for him. He had diabetes and other health issues. He eventually died. That was the beginning of the end for me. He took care of me, protected me, and loved me. So, when he died, I died too.

In 2006 I came to San Diego and that's when I got clean. I was very sick when I got clean. I was back at 116 T cells. I also found out I had Hep C. I started taking HIV meds and did the Hep C treatment as well. I wanted to be clean. It was time.

So, I found and stayed at a drug treatment center for three years. While I was in residential, we had an HIV group that was mostly men, maybe one or two women. While I was there, I got introduced to Christie's Place. At the Strength for the Journey Retreat is where I met my girlfriends. That's also when I met Liz, the Executive Director of the agency I would one day work for. I graduated from residential and became the women's house manager. I went to school to become a certified drug counselor. When two of my friends that I went through treatment with had committed suicide, I knew I didn't want to work in drug treatment. I needed to do something different.

I started applying for jobs at different places in the community. One of my sista girls told me that Christie's Place was hiring for a peer at that time. Girl, it was on. I got my resume together, my boss helped me to get everything faxed. I hadn't applied for a job in a very long time. After waiting a month, I'd come down to Christie's Place just to check in and see if the job was still open. This is where I felt God needed me to be. This was my job! I felt it in my bones.

HIV needs to be normalized. HIV is not a death sentence. HIV does not define who I am as a woman. It's just another part of my life.

I learned very early on that sharing my story didn't make it any less real that I was positive, but it made it a tool to help others. It's always some type of teaching opportunity because I don't want anyone to suffer like I did when I got sick. Women are still suffering like that, not knowing what's wrong because they "don't fit the demographic," even in 2021.

I tell my story because women need to know. They need to know they are not immune to contracting HIV! Are you having sex? I don't give a damn if it's your man of 20+ years. IT DON'T MATTER. You don't know what he is doing all the time. You just don't know.

When people find out that they're positive, they don't share because of the stigma, especially in the black/brown communities. And the backlash from our communities, we're looked at as dirty, bad, even though some get it from their husbands. You still get, "What did YOU do?" The blame is always put on the woman. "God is punishing you," "You did something. It will come out." Whatever. And then all of a sudden you start losing friends and your family starts treating you different. That's why a lot of people don't share their status. Some people even have to hide their medications, too.

If more people were willing to share their stories and accept the fact that they are HIV positive, there would be more people talking about it. It blows my mind that people don't know about HIV.

I'm constantly educating people. People that should know, don't. They grew up when the HIV epidemic started. So, I share my story because I want to help people. WE NEED TO TALK ABOUT HIV. We used to go to high schools, and I would tell the students to talk to their parents. When you're sitting around the dinner table, just say "Hey! Guess what happened at school today? This lady came in and was talking about HIV." Just bring it up.

HIV needs to be normalized. HIV is not a death sentence. HIV does not define who I am as a woman. It's just another part of my life. It's another story in my book that I must tell. And I use it to help. It gives me a platform that I wouldn't normally have.

I don't know what would have happened with my life if I hadn't contracted HIV. In many ways, it was a lifesaver. A blessing if you will. Because it got me into my purpose. Women are the givers of life. We take care of our babies, our husbands, our wives, our moms, our dads, and grandma, cousin, uncle, sister, brother, friends. We take care of everybody else before we take care of ourselves. It took me a long time to realize that I need to take care of me first. I need to put importance on my health and welfare in my life. I need to make it a priority especially now that I am being thrust into the position of the family I'm in now.

HIV is a 100% preventable disease. 100% preventable. And people are still dying from HIV. Why? Why??

So that's why I share my story. That's why I take my medicine. That's why I go to the doctor. We found out U=U, Undetectable equals Untransmittable, so I don't have to worry about giving it to anybody, I knew it anyways, but science had to catch up.

Will it ever stop? Having to bring awareness, will it ever stop?

My purpose is to be a voice for the voiceless. To help people in their life journey. To better themselves. To find a reason to live differently. I think that's my purpose.


If you or someone you know would like resources or support in relation to the themes above, please see:

Submitted by KatieAdsila
2

This is such a powerful blog, you’ve been through so much, some I can relate with but most of it I can’t even imagine, bless your heart for all you’ve been through, thank you so much for sharing 

Submitted by Valerie
0

Jay,

proud You are the face of what has really been going on as a heterosexual female long term survivor.  Everyone's story is different, but one thread remains the same, the societal prejudice of contracting this virus. The main reason every single person does not choose to be outright honest about their lifestyle and then leading up to acquiring the hiv virus is all due to STIGMA. Thank you for  having the guts to be brutally honest.

Not for nothing, even high society women have tons of secret absurd devious stuff going on , too , it is not just people living in poverty.

I am happy for you that you turned your life around to help others.  You should be very proud of yourself. Keep up the great work!

Healing Hope 's recent blog posts

Image

Members of The Well Project community at USCHA 2022.

Become a Member

Join our community and become a member to find support and connect to other women living with HIV.

Join now >

banner

Do you get our newsletter?

¿Recibe nuestro boletín?

Sign up for our monthly Newsletter and get the latest info in your inbox.

Suscríbase a nuestro boletín mensual y reciba la información más reciente en su bandeja de entrada.

Browse Blogs by Theme

Recent Blog Posts

Our Bloggers