What you might not know that even I can only imagine.

My mom was 22 years old when she was diagnosed HIV+. I was there, but I was only 3 months old, so please forgive me if I get some details wrong. I am doing my best. I have only the pieces whispered to me from relatives and the memories of the stories my mom shared with me when she was alive. These things were never said in full voice and never ever in mixed company. 

I want to imagine what this time period was like for my mom because I never had the privilege of knowing her as an adult. Almost..I was 17 when she died. But as I mother my own children, I am reminded that children are incapable of understanding their parents as full people. And that is ok and good unless you never get the chance to grow up. 

I imagine my mama cradling me in her arms. Bottle pressed to my lips. She is numb. She is in shock. She is begging God to save her. To save us. She has been living with my father and his 4 children for the past year, playing step-mom to my half siblings and homewrecker at the same time. Most of that year, she is watching her own belly grow with her miracle baby that doctors told her she would never have. But now everything is crashing down around her. Of course it is. You don’t interject yourself into the middle of a marriage and not have some fall-out. 

But she did not expect this. No one did. Who would have expected in 1986 for a heterosexual woman in rural America to be diagnosed HIV+. and yet, just the day before, my fathers ex wife had shown up sobbing at the door. Her message was unbelievable and yet it was true. She had been diagnosed HIV+. 6 months to live. Maybe more maybe less, but there was no cure. There was not even a decent treatment. She would suffer and she would die and she would leave behind 4 children ages 6-12. But what about my father? What about my mother? What about all of us kids? We all needed to go get tested. How long was the waiting period in 1986 to get results for an HIV test in a town of less than 2000 people? How long did these mothers, and fathers need to hold their babies wondering if they would at best be orphans and at worst be lost to the epidemic as well? No one knew much about HIV yet, let alone a poor illiterate woman. There was more misinformation and stigma than scientific facts. 

My mom must have felt cursed. She had grown up in an evangelical church and knew the lesson well. If you disobey God, he will strike you down! Her dream of becoming a mother was now being held over the fire. 

My brave mom who was 22 years old, facing each day with an HIV diagnosis and a new baby.

There must have been waves of new things to fear and grieve. While she waited on her own diagnosis, my father gave her his decision. If he came back positive, he would leave us and go back with his wife. He had hurt his real family enough. He would care for his wife and care for their children if she were to go before him. As it turned out, she was the only survivor from all of the diagnosis. I am so happy for her. Honestly. I wish my mom was here too, but I am glad that she made it. 

You already know the rest. My father was positive. They had been living together out at his sisters trailer. He would move back into his ex-wife’s apartment and my mom would stay with her now ex boyfriends sister in a tight fitting trailer on the same land as her ex boyfriends mothers house. The grandmother of her new baby. Can you imagine all of the mixed feelings that all of these characters had for my mom who had swooped in and taken my father out of his marriage? Can you imagine how they felt about her after he finally went back to his wife? Can you imagine how they felt about me? I was allowed visitations with my fathers side until I was about 6 years old and even though I was so small, I can still remember, if only viscerally, which relatives loved me and which was saw me as the product of the homewrecker AIDS diagnosis fiasco. 

My mom was eventually given an apartment in the housing projects for single mothers. She and I would live there alone for the next 6 years. I would visit my dad on the weekends. 

If you have been following my stories, you know all of this. But here is what you might not know yet. My parents were forced to get their HIV tests at the local health clinic. The clinic was the best and only option for healthcare unless you had reliable transportation out of town and health insurance coverage to go somewhere else. The clinic was staffed by an ever changing physician from away and local nurses. In all of my pediatric years at that office, I never had the same doctor for more than 3 consecutive years. 

They promised my parents confidentiality but what were the laws and protections in place in ‘86? They promised that the diagnosis would not leave the clinic, and maybe the physicians believed that. I mean, they were from away and maybe did not understand the ways that information is shared in small towns. The nurses knew the truth. They didn’t even hide their disgust and hate when my parents entered the room. 

They put rubber gloves on immediately and glared at my mom on the plastic paper covered bed. She clutched me and fought to remain calm and dignified while they threw the thermometer into her lap and said, “take your temperature and then leave the thermometer on the paper to be disinfected.” They wouldn’t touch her. They wished she wasn’t in there at all. Maybe they were genuinely scared. Maybe they didn’t know the ways HIV is transmitted from one person to the next. Maybe they already hated her for being poor and trash and were used to throwing her away. Maybe this was just another round of their abuse. 

My step mom was the first to receive her diagnosis and the first to face the violence of stigma. She was sitting in a booth in the diner in the middle of our small town. My siblings were fighting over plates of chicken tenders and ranch and one basket of fries. Money was tight and eating out was more about the experience of doing something out of the house than actually buying food to eat. 

She thought she noticed a waitress staring at her. She thought she noticed the waitresses whispering to each other behind their hands. But was that even new? How much whispering had been going on about her over the past year as her husband moved in with another woman who was growing his baby? Her stomach was probably in knots but the doctor had told her to keep living. To go on as best as possible for the sake of the children. They would not have her for long and she should try to spend time with them. 

“SHE HAS AIDS!!! I HEARD IT FROM A RELIABLE SOURCE!!” The diner staff had been escalating each other. Ew! She was sitting right at the table, eating off of the silverware and plates! They would have to throw everything in the trash. They were getting angrier and angrier. How dare she put them all at risk! Now they were out for blood. They were on the attack. 

My step-mom quickly got up from the table. She tried to get out of there fast, but she hadn’t paid and she had 4 kids to corral.

“Do you deny it?!” They wouldn’t let her get away that easy! 

She didn’t lie but she didn’t confess either. “Who told you that?!” 

“The nurses from the clinic saw it on your chart! We all know the truth! You have AIDS and so does your cheating husband and his slut girlfriend too.”

Did my step-mom defend herself? Did my big brother who is a pain in the ass but also a fierce protector to this day, stand up and defend his mom? Did they all even know yet what was going on? Had their parents sat them down and explained that they had been diagnosed with a virus that had just finally been given a name and that society hated everyone who had the virus? 

By some miracle, none of my siblings tested positive. Even I tested negative. Who knew that the evil corporate scheme to convince low income mothers to pay for formula instead of breastfeeding would actually save my life? I mean, I lucked out by being born negative in 86 to a positive mom. Now, babies have a good chance of being negative thanks to testing and really effective medicines, but in 1986 my chances of survival would have been near 0. Especially if you factor my class background in. Even if HIV+ babies were surviving in the early years, factor in malnutrition and trauma and I would not have had a chance. 

My mom had always told me that no one knew she had HIV. or at least that almost no one knew. Wishful thinking I guess, but I believed her. We needed to believe that the people in our town did not know we had this vile mark upon us. We had seen the reactions even from those who loved us the most, and we knew that the reactions from strangers would be worse. 

My mom with her parents. Their trailer was the most consistent place in all of my childhood. She never told me how they reacted to her diagnosis, but I know they loved her. My grandfather died just a few months after her and her mom died just a couple of years later. I miss them too.

Most of my mom’s family eventually came around. As the years passed and they became more convinced of the science that you can’t catch AIDS from sitting next to someone or even giving someone a hug. But in those first years after diagnosis, my mom and all of my parents faced the need to say goodbye to relatives who were terrified of them.

My mom was one of many. She didn’t talk much about this time period, but there was one story she was willing to share. One story that left a scar that she could still feel years later. She took me over to her sister’s house. Not her twin, but one of her sisters houses, it honestly doesn’t matter anymore which one. She was excited to bring me over to play with my cousins who were about the same age. We were all perfect little mischievous toddlers and she was desperate for a relaxing and nourishing afternoon of family and silliness. 

Maybe my aunt didn’t have a phone to call ahead or maybe my mom was the one without a phone. This was in the time before cell phones so it wasn’t as expected to call ahead. Either way, when my aunt answered the door, it was clear that this visit was both unexpected and unwelcome. Still ,she wasn’t a total monster. She opened the door. She let us in. She even let my mom place me on the floor to steal the ball from my cousins or whatever other toddler thing I did with my time back then. But when my mom reached down to comfort my cousin when he started to cry…well that was when my aunt needed to say what needed to be said. “NO! Deb! NO! Please don’t touch my kids.” Did she look angry? Afraid? Embarrassed? Sad? Did she love my mom and feel bad saying these things? 

My mom was obviously hurt. Did they fight? Or did they talk it out. I mean they must have to some extent because my mom did not pick me right up and walk out the door. Not yet at least. Maybe her loneliness and despair pushed her to work things out even though she was not the one in the wrong at all. “Why did you let us in if you don’t want us here?! So, I am allowed in but I am not allowed to touch my nephews is that it? Hunh?” My mom was a fiery woman but she was also deeply ashamed so I can not imagine if her words were loud or forced.

“No, Deb. That is not IT. You can come here. But you have to understand! These are my children. You can’t expect me to not protect them! You can sit on the couch but that is it. You need to sit on a towel and I will throw it away when you leave. You can not touch us or eat or drink anything. And you can not use the bathroom here.”

My mom was understanding now. Now she was pissed. And humiliated. I was oblivious still slobbering on the toy that I had swiped from my cousins fingers. She scooped me up and barrelled out the door. She turned back and made sure my aunt was looking before screaming, “I won’t be back, Don’t worry!” while rubbing her hands up- and down any surface she could reach. Honestly, she didn’t blame my aunt. I mean she was terrified of giving me HIV as well, but still, let my aunt sanitize her whole apartment. Let her tear the door off the hinges and burn it. 

A note:

Every word of this story is the truth. Or as close to the truth as I can get. Not every word or thought, but the scenes and actions are all true. The story involving my step mom at the diner was only used because she had shared it herself in a local paper decades later when it was clear she was going to be a long term survivor and was living in a different community. Out of respect for her and my siblings, I would never have shared a part of our shared story involving them directly unless she herself had already shared it publicly. Just to be clear about this piece. I am sorry if I have not captured the scenes or emotions perfectly.

9 thoughts on “What you might not know that even I can only imagine.

  1. Oh my gosh Crystal. There needs to be a mini series on your journey. I don’t know who you could contact, but life story needs to be heard. I know that your mom’s biggest wish was granted. You are negative.

    Liked by 1 person

    1. I could only imagine the pain and stress your mother was going through worrying that she could have infected her baby girl with a deadly disease. It’s so sad to think about the way your mom and step mom were treated. I am just so touched by your story.

      Liked by 1 person

  2. I have seen your posts on the AIDS Memorial IG page before and after reading this blog, you really should consider writing a book. Your life, as difficult and heartbreakingly sad as it was, is fascinating. You are an interesting person. You also know how to tell a story well. Please consider it, I know I would buy it.

    Liked by 2 people

    1. Oohh such a good question .. most of my family has little to no contact with me. I live in a different state and most of my relatives still live in poverty and most have not and would not feel comfortable leaving our hometown. Thank goodness for Facebook that I get to atleast see photos and feel a little connection. Sadly though with the exception of a few relatives, most seem to have forgotten and moved on. My mom was one of 8 and I really only feel close with one, her twin. ❤ also, to this day, no one on my mom's side has talked about aids with me. They mostly honored her secret when she was alive and still would not feel comfortable talking about it.

      Liked by 1 person

      1. I’m glad for you, that you have your mom’s twin sister. I bet it feels like a piece of your mom is still with you. I’m sorry to hear that they don’t talk about it. It has to feel so therapeutic for you to be able to talk about something you had to stay stifled about for years. No one should have to feel that way.

        Like

  3. I come from such a different background, and can’t stop reading. Humans are the same, feelings are the same… thank you Crystal for showing us life💕

    Like

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