Judgment Day

My mom stayed by Tom’s side every moment of his final year of AIDS related cancer and death. I was left to family, friends and finally back to the Pentecostal Homeless Shelter while she relocated to stay with him hours away at the big city hospital that would accept AIDS patients. We had stayed at the shelter before, and I had been a member of the church for years, but this was my first time staying there without my mom or Tom. I was only 10 and it was weird. 

The rooms were all organized by color or theme. There was the blue room with curtains, bedspread, rugs, everything all blue. Or another room was cow print and everything had a cow on it or had that black and white splotty print. They put me in the pink room. I was more of a basketball girl than a frilly pink bedspread girl, but I had never slept in a decorated room before and the fanciness made me feel special. I never touched anything in that room though! My mama always taught me that “if you break it, you buy it.” At bedtime, I would pull back the blankets, slip in carefully and then climb out in the morning, pulling the blankets back up. I remember how tight the sheets felt when I squeezed myself in. I was so scared to mess anything up that I wouldn’t even loosen the sheets to make space for my body.

I don’t remember how long I stayed at the shelter or really almost anything at all from my time there. I followed the rules, did my share of the farm chores and kept my mouth shut. I remember the food though! Farm cooked meals were like nothing I had ever tasted before. Eggs and toast and juice every morning! Chicken and potatoes for dinner! After all of those years of hunger and food insecurity, it’s not all that surprising that I can still remember sitting at their table savoring every bite.

Sometimes the shelter was occupied by families that were picked up from cities and relocated to this place at the end of a dirt road. Can you imagine? The shelters are full and crowded and your living in some big city and this van pulls up with these sunburnt farmers who tell you that they will let you live in their shelter if you just praise Jesus each Sunday? That’s how it was for the Irish immigrant family with 5 babies and the grandma living with them and the goth kid who didn’t last too long with us. The preacher burned all his stuff in a heap in the yard and I sat in terror at the window watching.

If you could overlook that the farm was run by witch hunting Pentacostal missionaries with a house filled with transplanted homeless people from varies cities, it was a normal functioning farm. Cows. Chickens. Gardens. One night, the farmer invited me to witness a laboring cow. I stood there , crying in the dark, breathing in the unmistakable smell of hay, blood and manure and thought, “this is the most beautiful thing that I have ever seen.” The farmer named the calf “Crystal” in my honor.

    One morning, the farmer/preacher’s wife came into my room. I liked her. She was kind and quiet and lovely. I still love grey hair on older women and I know it’s because she left such a mark on me. I thought she was the most beautiful woman alive when she would stand in front of us and sing in church with her sparkling silver hair swinging all the way down her back. (Women and girls at the farm were not allowed to cut their hair or wear pants.) Anyway, she came in and let me know that I was not going to school that day. 

    She put my one bag of belongings in her car, instructed me to sit in the back and drove us the couple of hours to the hospital. She informed me that my step dad was “gone” and we would be bringing my mom home. Then she was silent.

    On that drive, without radio (we also weren’t allowed to watch TV or listen to music that wasn’t religious,) I had a lot of time to think. I was so happy that my mom was finally coming back to me. My mom. I felt the rock in the pit of my stomach. I missed her so much. I thought about how she cared for my step-dad, a man that had spent the past few years beating her almost to death. She washed his body. Cleaned his vomit, carried his weight when he got weak. Let him shower her in insults while she held his hand and guided him through the world when he lost his sight. I have never given it a lot of thought but maybe a small part of me was a little jealous that she gave him all of herself that year, and I was left to protect our secret from the rumors at school, fend off bullies in the shape of cousins, and grapple with my own fears and traumas in a place where everyone around me was rolling down the aisles and speaking in tongues.  But I think even then I understood that my mom was doing the right thing. There was no one else that was going to help shoulder the weight of caring for a person dying from AIDS related illness. Not in 1995. 

    Who would do that for my mom when her time came? Would Tom have if the tables were turned? Shudder. I still can’t imagine how much worse life would have been if she had died first. Thank you mom. I know you pushed through for so long for me. Yes, for me. It would be me who would care for my mom at the end. I knew then that my mom was right that I was here to be her angel. To pull her out of the burning house and carry her to safety. There was an old man who came to church every Sunday at the shelter and his body was scarred from a house fire. He was all hunched over and even his fingers would no longer stand up straight. His voice was almost gone except when he sang “Amazing Grace!” that same song every Sunday. The preacher told me that the man had been  trapped in a burning building and only when he cried out for the Lord, did he feel himself lifted and carried to safety. I was young and impressionable and The Pentacostals do not mess around with their storytelling, so I was completely buying into every word. In fact, I literally thought that God sent me to care for my mom just like the angel that saved the old man. I hoped I would be strong enough to hold her weight when the time came. 

    The hospital was hours away from our small town, and as we drove, I thought about Death. Death  is so much bigger if you are a born again Christian than just the end of living in this physical world. It is eternity. Eternal Life or Eternal Hell. There was nothing more terrifying during that time period than the idea that my mom or I would end up separated for eternity. I already knew that she would die but the idea that our souls might not meet up in the afterlife was unbearable.

My mind would see-saw between both scenarios. Sometimes, I would imagine that my mom would be the one welcomed through the pearly gates. Sure, she had once lived a life of sin, but she was a good christian lady now. Then I would get nervous about my own standing because I had questions about religion and it seemed my questions were wrong. My inquiry into why our loving heavenly father would punish children born into families that believed in other Gods even if they lived a life of love and goodness was rewarded with a fast hard smack across my face. I thought, “Jesus loved all the little children…all the children of the world!” I wasn’t sure if God would allow a fierce believer with questions. Then my mom would chase me from one end of our trailer to the other with a knife drawn up ready to stab me for some minor unmemorable infraction and I would worry that oh no! Maybe it was her soul that was destined for hell. It was all complicated. I just kept my eyes on the skies and waited for the trumpets to sound the Judgment Day. Literally. I was delusional from living with these bedtime stories of resurrection.

I once witnessed the preacher, during a particularly rowdy tent revival ceremony, grab a girl about my age by the shoulders. His enormous farmer fingers dug into her shoulders and watching it, I couldn’t help but feel my own shoulders to make sure it wasn’t me. It was so vivid and still is to me. He was so red in the face, he was turning purple and he was shouting and spitting all over her. I couldn’t understand the words because he was “speaking in tongues” but this scene felt familiar. I imagined he was saying how she was an evil and dirty little girl and that the Devil was inside her. That would be what he was saying if he was my step-dad. Smack! He took those huge hands off her shoulders and grabbed ahold of her head and threw her hard backwards. I heard the Thwack as her body slammed into the ground. I always assumed I would be next. I always assumed they would see Satan in me, the questioner.  I understood that they never corrected Tom for his violence because they knew he was just carrying out Gods work.

    Snap. Back to reality. Back to the car ride to see my dead step-father. (I never got to see my dead father, who also died from AIDS) and pick up my dying mom. 

The preacher’s wife was talking to me. We were at the hospital. Even when I put myself back in time to visit this memory, my mind watches the scene from the ceiling as if I am watching a movie of a little girl walking in to see death instead of being that little girl. I learned to leave my body quite young. Anyway, the hospital was big and scary and white everywhere and smelled like Disinfectant and death. But I didn’t know what death smelled like yet. Did I? Not human death. So many adult faces standing over me. And then! There! My mom! Through it all, there she was. But there was no time to be comforted yet. Right then, there were big decisions to be made. Tom’s body was still in there. In the hospital bed. They hadn’t moved him yet. Is that normal to leave a dead body in a hospital room for hours? Aren’t there protocols against such things? Had they kept his body there waiting…for me? 

That was the big question. Did I want to go in and see Tom’s body? Did I want to say goodbye?

His mouth was stuck open. I could see the pain in his eyes still. I could see that he had been gasping for his last breath. It had not come for him. I did not say goodbye. I did not have anything to say to him. Or to anyone. I was not confused about where Tom would go. Tom who used every possible weapon against my mom and I. Guns, knives, fists, penis. We were never safe and now, Tom would never be safe from the fires of Hell. I wasn’t comforted by that. I didn’t want vengeance. I just wanted safety. For me. For my mom. 

This is where I became very quiet. I talked so little that my mom got me into some counseling program, “Wrap Around Services.”  The young student therapists that they would send out to the trailer could not get me to speak so they gave me a journal and they gave me an assignment to write. But I was not ready to write either. I was not ready to trust myself to tell any of this story. I knew that this is a dangerous story and I needed to be careful with how I let it out. There was still so much at stake. I still needed to protect my mother. 

I am a little surprised that I don’t have more feelings around seeing Tom’s dead body. For a few years, I would see visions of him. Walking into the doctor’s office, at the grocery store or once I rolled over and saw him lying beside me in bed, mouth open, eyes staring right through me. But other than these ghostlike hauntings, he was just gone for me. I was mourning, but not for him. I didn’t even realize this fully until I sat down to write this.

I was grieving the years of torture that my mom and I endured. Looking back I realize, I was silent, not because my grief was so huge, but because if I couldn’t speak my truth and name my grief accurately then I wouldn’t speak of it at all. It was easier and more socially acceptable for a child to be grieving the death of her step-dad than to admit that I was finally gasping for air after so many years of holding my breath. How would the world have reacted if I told them I was processing the waves of trauma flooding over me as I  realized what we had survived? If I admitted that when Tom first got sick, i prayed a thank you to God for giving us a break. It is taboo where I come from to speak ill of the dead, but I prefer that quote, “You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.” It took me another decade to hear that quote for the first time and another decade to take its advice. 

Death is just a natural part of life. Unless your parents die from an epidemic fueled by hate oppression and government neglect. All of my parents died in their 30’s. I am definitely the kind of person who is always looking for the hope and the reason to be grateful and that is always woven into my stories. I don’t want to leave you with only trauma. I want you to know there was also love. My mother’s love for me pushed her to survive for 17 years with HIV. At the end there was no question if I would see her in death. She died in my arms with our fingers interlaced. At home. 

What this AIDS Orphan wants for World AIDS Day 2019

My father was buried in the backyard of his mother’s house. This was the first time I ever saw his stone.

It’s World AIDS Day again, and I am an AIDS orphan. Most of the year, I pretend to be a regular person. A mom. President of my Public School Family Council. Basketball Coach. Community Organizer. But this one day, I let myself remember out loud. I take out the pictures, I cry, I go to the events, and I read anything that I can find written by survivors and those of us who are left behind. It helps. It does. To feel like I am honoring not only my parents, mother, father, and step-father, but  also myself. My FULL self. I keep searching for community, for belonging, to be SEEN and HEARD and to feel and weep and laugh along those who share experiences like mine. 

The only time I have ever been able to visit the place where my father is buried. He has another grandchild now, so we will have to return so she can see it too.

The World AIDS Day events that I have attended are beautiful, but they always leave me feeling slightly more lonely. Slightly more invisible. They are rarely held at family friendly hours, and I want my kids with me. They will never meet their grandparents, so I feel like they deserve to be a part of this day. They need to know this story as much as I need them to. This is not only my story, it is their story too and it is the story of this country. I need them to know this in their bones. I need them to know that this country sacrifices those at the margins for the sake of the rich and powerful and that sometimes we are at the margins when the sacrifice is made and sometimes we are safe. I need them to know that SILENCE = DEATH and that it is our responsibility to listen, learn and stand up when we see people being abused and discarded. 

This woman who at 22 years old, was diagnosed with HIV and continued to fight and survive so that she could raise me. ❤ ❤ ❤
The only picture I have of my father. This was one of the last times I saw him.

This year, I had big plans for World AIDS Day. I wanted to write a Call to Action! I wanted to try to get it published. I wanted to look into hosting an event  locally, but my current life demanded my attention. We had a death in the family. My oldest had pneumonia and spent some time in the hospital. So, here I am, the day before Dec. 1 and this is going to have to be enough this year. A blog post written in haste with my children heaped all around me on the couch and already getting antsy from me staring at the computer screen and not staring at them. “Mom, Look at me! Mom, look at this!”

Every year when I make my posts about World AIDS Day or speak at an event, people say the same thing. Some version of, “I wish that I was there! I would have protected you! I would have loved you. I would have helped you in any way that I could!” For World AIDS DAY this year, rather than telling me what you would have done to SAVE ME, I am asking you to listen to my stories. Read my blog, read the stories on sites such as the AIDS Memorial on Instagram. Open your heart and feel the grief and love and despair that we felt during the early years of this epidemic. And then. Look around you. Maybe you have an AIDS orphan in your neighborhood, and if so, give them the love you want to give me. Stigma is still alive and exacting its violence on those who are living with HIV/AIDS. Do what you can to educate yourself and break the silence still surrounding this virus.

If you look around yourself and you do not find an AIDS orphan next door, notice your neighbors. Notice the kids who go to school with your kids. Stand beside those people who are currently on the margins and suffering from the tyranny of our unjust system. Love them like you love me. See them and listen to them. See us. Listen to us.  I hold our government accountable for the deaths of my parents and I know that the violence continues for a whole new generation of people

Community Organizing with my kids. Baby not pictured, but there with us, just below in the stroller! ❤

World AIDS Day is about so much more than AIDS. It is about remembering a terrifying time in the history of this country where thousands of beautiful lives were extinguished and the mainstream and the powers that be, sat back and allowed it to happen. It’s about celebrating all of the survivors and honoring their struggles. It is about giving space to those of us with broken hearts and broken bodies. It is about remembering, out loud and committing ourselves to the struggle for justice so that we can finally end the cycle of violence in this country. 

A side note: I want to wait until tomorrow to post this so that I have time to edit and make it better, but instead, I am going to publish it now, because tomorrow, I am taking my babies to a baskteball game where I will be rocking my AIDS Memorial T-shirt in front of all those people without even a hint of shame. and I will be too busy being alive and loving my kids to be staring at a screen. Thank you for reading my blog! and for remembering with me.

Big Bucks, No Wammies!

I was dating this boy that had a huge crush on my best friend. Which was fine. I didn’t like him like that either. If I’m totally honest, I probably had a crush on her too. ANYWAY….! Everyone had a crush on her. She was that girl in high school and to this day I still have no idea why she chose me to be her sidekick for those few precious years. It was like she reached down into the gutters and pulled me into the light. I was a NOBODY and even worse, a SCUMMER before she decided I was worthy. 

The three of us had just scrambled up my porch and threw open the door to my apartment ready with our usual shouts of “Hi, Mom!” “Hi Ms. Arnett!” “Hi, Crystal’s mom!” before closing my bedroom door behind us. My house was the best for hang outs because even though there weren’t any snacks, my mom was pretty oblivious to our mischief and gave us a lot of space. I’m a mom now and looking back, I have to add that it was far too much space. She was a great mom, but for some reason, she just did not parent me once I became a teenager. She treated me like a little adult. I could come and go as I pleased for the most part. 

When we opened the door, we found a young man dressed in a suit and tie holding a paper out for my mom to sign. 

“Whoa! What is going on here?!” I was freaking out because my mom was illiterate and there was no way that she knew what she was signing. I wasn’t going to say that in front of my friends but also, WHAT WAS SHE SIGNING?!

“Hi, young lady!” um this guy was like 5 years older than me. Maybe. Ugh. I hated him instantly. “I just sold your mom a new Vacuum!” 

“We don’t need a vacuum! Mom! What is going on?”

“Let me show you how it works. You will not believe the dirt that you had in this carpet!” He holds up a bag full of filth that he informs me (in front of my friends!) that he cleaned out of this one small patch in our living room floor. Now I was boiling. And I was so embarrassed I thought I might puke. This was a touchy spot for me. I had only just started bringing friends around to my house when I hit high school because before that I was too ashamed of our poverty. My mom was too sick and too depressed to clean our house and I was too young to care about cleanliness. Plus, I was my mother’s daughter and the only time I can picture her cleaning was when she was helping my aunt at her work. 

Mr. Salesman pointed to a square of carpet that was about 10 shades lighter than all of the surrounding carpet. It probably had never been vacuumed. It was gross. I could see it now and so could my friends. 

Still, we didn’t need a vacuum! We had one. “Oh my God! This is such a SCAM! You did not get that much dirt out of that tiny area of carpet!” I snatched the paper out of his hand. “Give me that! What did my mom just sign?!” 

It was worse than I expected. The vacuum was more than $1000. My mom was unemployed. In fact, she had never in her entire life held a job on the books. Babysitting for pocket change was just enough to maybe buy us a few of the odds and ends that food stamps and HUD housing voucher didn’t cover. That vacuum would take us YEARS to pay off. We couldn’t even afford the lights and heat as it was. We were not only month to month, we were on the pay $10 here and $10 there and hope that they don’t turn it off plan! 

Maybe he didn’t know that. But he could have looked around and figured it out. I mean we were the kind of poor that you could see. 

I did not know what to do. My panic was greater than my shame. There was no way we could pay that bill but there was my mom’s signature right on the bottom. That was one of the few things she could write. I would always write out the letter or wherever and then she would write Thank you. Deborah L. Arnett. You would think that since it was the only thing that she could write that maybe she would have perfected it but no, it was so messy and shaky like a kid learning cursive for the first time. 

When I knew that my mom was dying, I cut her signature out of a note and I have held onto it all these years. ❤

I took the contract with me and I went outside. I needed space to read it through and try to see if there was a way out of it. My friends followed me. I was humiliated and pissed. The boyfriend watched helplessly as tears spilled all over the papers. He was a goofball. Silly and mischievous and not the most practiced in navigating difficult emotions. But his reaction was exactly what I needed. 

“You know what?!” He reached for the papers. “Nope. Give me that.” Riiiiiiiiip. He grinned from ear to ear as he shredded the contract. “Your mom didn’t sign nothin’.” 

The 20 year old vacuum salesman descended my porch steps pretty quick. He was red in the face and spitting words at us that I could not even hear. I could not believe this boy just did that! We dated for maybe a week longer and I never even kissed him, but that boy was my hero that day. 

The icing on the cake was that the carnival was in town and we saw Mr. Vacuum Salesman at the fried dough stand. The boyfriend went directly into action. “Hey, look everybody! There’s our friend Hoover! He likes to steal from poor people! Hey, Mr. Hoover! Where you goin’, buddy? Come back! Maybe you can sell us a vacuum!” He followed him shouting for everyone to hear until he left. He was probably just another poor kid at his first job from the next town over but I guess he learned a lesson that day. 

My mom didn’t even care that we weren’t buying the vacuum or that her teenage daughter’s boyfriend ripped up a receipt of sale on a major purchase she made. It was like she had been under a spell and once the paper was ripped, the spell was broken. She literally did not react or at least I don’t remember any reaction. 

She must have known that it was a trash decision, but also this was the same woman who watched the game show “BIG BUCKS NO WAMMIES!!!” Where she would shout that at the television and cheer when the contestants won money and actually take it personally when they lost. She would enter for the Publishers Clearning House Sweepstakes every single month and buy things on credit (who would give her credit? Oh right! Publishers Clearing House, the company that is famous for scamming poor people into thinking they were going to win big!) So, maybe she didn’t realize it was a bad purchase. Who knows?

My mom had elaborate plans for how she would spend our money when she finally beat multi-generational poverty by winning the million dollar sweepstakes. It is actually when I remember these plans that I realize how deep my moms delusions and anxiety were.

This woman who could not do basic math or read or write would sit me down and explain in elaborate detail about how if we won, we would lose our state medical insurance and she would have to pay for all of her AIDS meds out of pocket and so we wouldn’t really be rich because we would have to put aside for that. We would have enough money though to get my grandparents out of the trailer park. We would get ourselves a nice double wide and they would move in with us. We once had a landlord that lived in a double wide trailer across the way from our single sized one and it became the epitome in my mom’s mind of comfortable living. 

I do not share my mom’s desire to win big but I did partner outside of my class and although it wasn’t a conscious decision it basically was the same as winning big. In the United States, partnering outside of class is one of the few ways to climb the class ladder. Its not as impossible as opening your door to find the Publishers Clearing House delivering a giant million dollar check, but still not that common. 

I haven’t spoken to the boy/class hero in many years, but I might send this to him. This marked the beginning of a shift for me away from shame about my poverty to a healthy anger about our society’s class system.

Teenage Daughter-Death Doula

About a month before my mom died, I stopped going to school. It was January of my Junior year in High-School and everyone was thinking about mid-terms and how this would decide the rest of our lives. I wasn’t thinking about the rest of my life at all. I was thinking about my mother. I was thinking about how she was my whole life and that maybe I would just die with her. Not that I was suicidal but that I couldn’t imagine a reality that did not include her. I thought I would evaporate without her. 

One night, while I was asleep in bed, I woke up to a horrible sound. I flew out of bed and searched for my mother. Had she fallen off of the couch? She had never slept in a bed or a bedroom in this apartment. Our living room had always been her space. She wasn’t there. I ran to the bathroom, but she wasn’t there either. I told her not to get up without calling to me for help! Where was she? And then I saw her foot, curled the wrong way coming out from underneath the kitchen table. I ran to her, the tears already pouring down my face. “Mama! Mama! MAMA! Are you okay?!” I reached my hands under her sweaty head and found a goose egg the size of my fist already forming on her forehead. It was the ugliest thing that I had ever seen. “Mama!” She opened her eyes and mumbled something that I could not understand. I bent down and picked her up like she was just a baby. I was not as tall as my mom yet, and I was only 115 pounds, but she was already wasting away. It wasn’t even hard for me to pick her up. I carried her limp body back to the couch and I tucked her back in. I sat with her all of that night and watched her chest rise and fall to make sure that she wouldn’t leave me. 

Sometime that night, my whole life changed. I knew before the sun even came up that I would not be going to school that day. That I would not be going to school any day in the near future. I wanted to be there for my mom and take care of her and spend every second that I could with her. 

That also meant that I would have to write a difficult letter to my boyfriend. He was the love of my life, but things had gone terribly wrong since he left for the army. He was a few years older than me, and almost as poor. He didn’t have the option of college or a job waiting for him, so he took the only chance boys like him were told they had. At first he hated the military. He would write to me constantly about how he was desperate to get out. Over time, those letters started to change. He would write things that I had never heard him say before. He was suddenly vocally racist and turning into a man that I did not know let alone want to spend the rest of my life with. He was furious when I told him I was not going to make the trip to Georgia with his parents to watch him graduate from military training. He could not understand how I could choose my mother over him. She was dying! Why would I be so focused on the past with her when he was my future! And he needed me!

I was alone. My best friends were all older than me and either graduated or were graduating. I hadn’t seen my half siblings since I was a small child and I had no one that I felt safe with or seen by. I turned to my best friend, who was a boy, for comfort. I am not proud of cheating on my boyfriend in the army, and to this day, I feel guilty, but I was scared and I needed someone to hold me and love me and take care of me and I had always been taught to turn to boys for that. Not taught by example, boys in my life had mostly been a source of trauma and violence, but in the stories that we are fed. This boy was different. He was gentle and kind and I felt safe with him. The night that my mom finally died, it was this boy who sat with me as I said goodbye. He went home well after midnight after his mother called frantic to our house looking for him. He was an upper-middle class boy from a good home and I honestly remember feeling a little guilty for scarring him with an AIDS death. That was for people like me. Not him. 

When he left, I laid down beside my mom. We had since gotten her into in-home hospice care and they had brought a hospital bed right into our living room. It was pushed up against the wall where our couch should have been. Above my mom’s head was a small prescription note ripped from a doctors pad at the hospital. It said Do not Resuscitate. I had fought for that note but I also hated it. I wanted to be strong enough to do this. To let my mom go, but I needed her. I felt selfish. I said the right things. I held her hands. I whispered into her ear that she could go and that I loved her, but my heart was shattered and I didn’t mean a word of it. 

I wanted to scream at her, “Mommy! I need you! Please don’t leave me!” but I knew that would not make a difference, and besides, she was already almost gone. Science and medicine would say she was still there, but I had felt her leave already. I had felt her squeeze my hand after not being able to acknowledge anyone for days and then I had felt her spirit leave me. 

Our last picture together.

Now, I was laying with her body, still sweating and breathing, but barely. I will never forget that moment in the early hours of January 20, 2004. The way she looked, and smelled and breathed and lived will forever be etched on my soul. I wish that I could remember her voice too, but she had already given up on words. My mother’s voice is like that thing that you can almost remember, but not quite. It sits on the tip of my own tongue and I try to let it out. I try to hear it..and I almost do. Sometimes. Sometimes I hear it in my dreams. But these visits are never the kind that I am so desperate for. They are not the visits from the mother who would hold me and rock me and love me. These are the visits from my mother who was so deeply traumatized that she became the abuser. She chases me in my dreams. I do not fight back, but I do protect myself. I run away or jump out of windows to avoid her swinging weapons at me. Sometimes, she catches me and I can see her wild eyes glaring into mine and she is trying to kill me but I always make myself wake up. Then I can still feel my heart pounding and my voice is screaming in my head, begging her to stop. To love me again. To not hurt me anymore. Both of those mothers existed in real life. I wish my dream world could remember both. 

I never defended myself against these attacks, although I didn’t just stand there and take it either. I would run away if possible and dodge anything she could throw at me. One time, when I was finally almost as big as my mom, not too many months before she died, I grabbed my mom’s fist as it came flying at my head. I did not hit her back, but I did use my newfound strength to hold her back from continuing to abuse me. We crashed into a chair and I used that opportunity to bolt out of the house. I ran all the way to a friends house and pretended that I was just bored and looking for something to do. 

My grandmother found us walking downtown and stopped the car right beside me on the sidewalk. I gulped and gave my friend an “I’m sorry for what is about to happen” look. She had no idea what was going on. I was humiliated by my abuse and never told her, or anyone, what was happening. My grandmother snatched me by the hair and dragged me to her car. She whipped the door open and threw me in the backseat. I might have been almost as big as my mama but I wasn’t even close to as big as my grandma! She lit right into me, saying some nonsense about how my mom called her crying and how she wouldn’t tolerate me beating up on my own poor mama. Well, I opened my mouth to respond and tell her what was really happening when she turned around to face me in the backseat and smacked me HARD across the face. I gave up and just cried the whole way back to my apartment with my mom. I didn’t even have enough fight left in me when I got back to object to my grandma demanding I apologize to my mom. I just said, “I’m sorry” and locked myself away in my room. 

I was not completely innocent throughout this time either though. I know that I didn’t deserve any of that abuse, but I DID deserve some kind of punishment or something. I was convinced that I was trash. That I did not matter and that no one loved me in the world. And so it was that I fell prey to every evil small town America can muster up. Boys and alcohol and drugs were my primary source of pain and pleasure and I was not giving my mom an easy time at all. If she wanted to protect me, she was going to have to stand in my way and I had learned that she no longer could. At some point I simply stopped sneaking out of my bedroom window and started walking out the door. My mom gave up too. I would look over my shoulder and say, “I love you. Good night. See you in the morning.” and she would say it back. No questions about where I was headed or who would be there or how I was getting there. We both just wanted to make sure that no matter what happened, those would be the last words we said to each other. On one hand, because we knew too well that our time together was not going to last and also because I felt like it was a magic spell almost. Like if we always said those words, then we would see each other in the morning and my mom would never die. The night that she finally passed, she was not able to say those words and I chose not to. Instead, I said, “I love you. It is ok to go now. I love you so much mom.” Maybe they did hold a little bit of magic. Who knows. 

I thought of all of this during the weeks of no sleeping that my mom was dying at our home. After her fall, I committed to not sleeping unless the hospice nurse was visiting during the day, so that I could be sure that she wouldn’t try to get out of bed alone again. I remember staring for hours at that little note on the wall above her. D.N.R. I wanted to tear it off the wall so many times. It was such an important piece of paper, but it was just barely taped there. It looked like someone had just taped it up in a hurry because it was crooked and only attached with a tiny piece of tape. But I had fought for my mom to have the right to die at home. I had stood up as tall as I could and looked directly in the eye of the doctor in charge of my mom’s care. He would not discharge my mom without giving someone the discharge orders so that someone would know how to take care of her since she was no longer cognitively or physically able. She really had never been. 

Look closely and you will see the DNR taped above my moms bed. She was only 39 years old.

“Listen, I know you want your mom to go home. If you want that, I need to speak with an adult. Isn’t there someone that you can reach who can come here and get the instructions for her care so that we can discharge her safely?” -The young handsome doctor that everyone in my town seems to love and admire. 

“No. There is no one. There is me. I am her caregiver. I am 17 years old. If I was 18, would you give me the instructions?”

“Yes…I would. I need to give the discharge paperwork to an adult. Not to a child.” 

“I am not a child! I am the one who has taken care of her all of these years! Can I call a relative? Sure! I could call up my grandma or an aunt or uncle, but it won’t be them at our home making sure she takes the right meds or holding her hair back while she pukes or making sure she eats enough and stays hydrated. It will be me! So, you tell me what is safer, giving the discharge instructions to an adult who won’t be there or to a child who will be?”

He looks at me. I think he hears this. I know that it is not only my age that he is weighing the risks of. He has also heard of my reputation. He is close with a parent of one of my classmates. Also, it is a small town so no one is free from their own reputation. What if he sends my mom home with me and I just leave and go out drinking? Looking back I can see that his intentions were probably good, but in that moment, I hated him. I hated that he was adored and I was hated, that he was all powerful and I was weak. That he held my mom’s final wishes in his hands and could stop me from giving her what she wanted. 

“Please. My mom wants to die at home. Please don’t keep her here.”

Finally, he helped me make a plan. I would need to fill out some paperwork and we would need to keep that note in a clearly visible spot that an ambulance crew would definitely see if they were called to our home. And so it was. My mom got her wish to die at home. Over those next few weeks, I panicked more than a few times and pushed the emergency button that would get me a hospice nurse on the phone immediately. I knew there wasn’t anything they could do except keep her comfortable, but I was still terrified of what was happening. I was committed to helping my mom die at home, and I never would have let them take her, so I am not sure what was going through my head when I would slam down on that button. I think I just needed a witness and I needed someone to know that none of this was ok. 

Being with my mom as she died is a sacred gift that I am incredibly grateful for. She accidentally birthed me at home (well in a truck, not in a hospital) and then I intentionally helped her transition out of this life at home. It made sense to me that I would share that moment with her. We had always shared everything. 

A newspaper clipping about my mom’s accidental home birth.

Losing my mom was terrifying for the many years that I anticipated it, but when it happened, it was not scary at all. It just was. After she died, I took one last look at her. I tried to memorize every detail. I knew that it would be the last time that I would see her. She wanted to be cremated. Then I walked to my room, pulled the covers over my head and went to sleep. I have no idea how long I laid there or if I was even really asleep. I know I wasn’t crying. I was numb. I was numb for a long time. I remember “waking up” in my high school English teachers house and realizing that I lived there now and realizing that I had been sleepwalking through my life since my mom’s death.

That morning that my mom died, the local funeral director came into my room. He knelt down beside my bed and pulled the blankets back so that he could see my face. 

“Crystal, I know this is hard. I need you to answer a few questions for me so that we can arrange a funeral for your mom.” 

“I can’t do it. Isn’t there someone else you can talk to about this?”

“Crystal, there isn’t anyone else here. I promise it won’t take long. I just have a few questions.”

“What was your grandmothers maiden name? What year did your mom’s husband die?…” I answered these questions calmly, but with hot tears streaming down my face. I thought of the irony that when I wanted to be considered grown up enough to take care of my mom, the system saw me as a child but when I wanted to be left alone in my grief, it didn’t matter that I was a child. I was the only one there. 

Just a few months later, my only grandfather died and I sat on the porch of my uncle answering all of those same questions again with that same funeral director. This time I screamed at him, “Why are you asking all of these questions again? You know all of the answers! How many of my relatives have you buried? My father, step father, cousins, grandparents! You know this. Are you trying to hurt us?” This poor man was actually a sweet guy just doing his job, and I hope he forgives me and understands that my rage was not meant for him. I was mad at death and AIDS and poverty and drugs and all of the world for allowing my family to  be vulnerable to these predators. 

There is not a day that goes by that I do not wish that my mom were still here. I miss her so deep in my chest. It still hurts to think about. I know that she would have softened in her old age. I tell myself that she would not have chased my children around with knives as she chased me. Grandparents are gentler with their grandchildren than with their children. I know she would have loved my three angels almost as much as I love them. I will never have her back.  But when it hurts the most, when I miss her so much that I can not breath, I let myself close my eyes and remember that day. 

The day she died. and it brings me peace. The early morning hours when it was just us again. Curled into each others arms in a sweat soaked bed. Her hair matted to her face and clinging to my shoulder. Our fingers interlaced as I said goodbye and as she left me. I will forever grieve my mother, but i am also eternally grateful that I got the privilege to guide her to the other side. I am not sure what waits for us after we die, but my mom was a believer in Heaven and God and the Angels and so that is where I picture her now. Singing off tune with the angels and giving my little babies angel kisses before sending them over to me on this side. 

My oldest child on a visit to my hometown, walking toward the alley where I was born. She never met her grandmother, but she stood in the spot where her grandmother gave birth to her mom. ❤

Deborah Lynn Kellner Arnett     8/02/1964-1/20/2004

An intimate history of gun violence in rural America through the story of one girl

Content Warning: Gun Violence, Domestic Violence, Suicidal Ideation, 

I am sitting in the public library trying to focus on what is real and in front of me to slow down my brain which is spiraling into anxiety and fear. I am scanning the room for exits and checking to see if the door we are near locks. It doesn’t. I try to make my eyes stay focused on my oldest, happily absorbed in a book. I  see my son building blocks with my toddler. I also see a man walk in weighted down with heavy bags. I try to make eye contact so that I can gage his mood and if he is a threat. This is not uncommon behavior for me, but given the latest news cycle of mass shootings, my alarm bells are louder and easier to set off. 

I hear a lot of debate about guns and the causes of mass violence, but I am not hearing a lot from the people who live in the communities who supposedly love guns and benefit from having easy and constant access to them. I am sure there are many people from my neck of the woods who would have a different analysis and experience than me, but I know for a fact that there are just as many women and children living in the war zone that I grew up in. I have learned that if I can not find what I am looking for, then I need to create it. The stories that follow are just one girls experiences of growing up poor in gun-loving rural America. 

The first time I held a gun in my hands, I was only five years old. I was sitting criss-cross applesauce on the edge of my dad’s bed. My dad, my real birth dad, was dying of AIDS so he lived all of his days in a hospital cot that was in the living room of the apartment that he shared with his wife (not my mom) and my four siblings. I spent a lot of time curled up in that bed on the weekends when I was at their home. 

My dad reached under his pillow. He pulled the gun out and although this is my first gun memory, there must have been something before this, because I sensed danger. Already the hairs on the back of my neck were raised and already I was terrified. Even in the arms of my dad who called me “Face” and “Sunshine” and told me he loved me at every chance.   

He was saying words, but I do not remember them. My memory of this moment is a silent film. I can feel the weight of the gun in my hands. I am already trained to play along with men, even dad-men, and act like I am interested in whatever they say so that I do not make them angry. I examine the gun with my eyes and try to force a smile at my dad. His eyes are not smiling. He looks sad. He looks scared. Why is he scared?! If he is scared then I definitely need to be scared too. I do not know what shifts but I feel it in my body as my dad takes the gun out of my hand. Now, I feel that cold metal that was just in my hands, pressed against my head. I can’t breathe. What is happening? Then. My brother, the oldest one. The one that I am also scared of. He enters the room and without thinking, I dive off of the bed and run out of the room as fast as I can. I know that my dad can’t get out of bed to chase me. I will be safe now. Not only does he have AIDS, but he had Polio as a child and his immuno-depressed state has somehow reactivated the polio and stolen his ability to walk even with a cane as he used to. 

When my mom comes to pick me up with her new boyfriend, Tom, I am still trembling. I am still not forming words, which is unlike me. If I am not talking, something is not ok. My mom would not let it rest until I gave her the details of what happened. She is furious and over the course of the next week her fury and fear are building and building. The story of what happened is building and building and I can no longer at this age decipher between what happened and what was my mom’s interpretation of what happened. 

That Friday, my mom locked the doors and turned the lights off when my step-mom, Jane came to pick me up. When Jane demanded that my mom send me with her so I could see my dying father, my mom let loose on her. If not for that locked door, I can only imagine the brawl that would have ensued. Instead, I was witness to a knock out drag out screaming match. The hysteria died down and we let our guard down and turned the lights back on. Then the police came. 

Boom! Boom! Boom! “Open! Up! It’s the police!”

Now my mom is not mad. She is terrified. We are white and therefore incredibly privileged, but in a small predominantly white town, it is this part of town, the low income housing side, that sees the most police aggression. Still, I am her only child and she has nothing to lose. She will not put me in harms way. “NO! I will not open this door! I will not let you take my child back to that place!! Please! He put a gun to her head! He put a gun to my daughters head! I won’t let you take her!” 

“We have a court document that states that the child needs to be with her father right now. We need you to open the door or we will be forced to bust it open.” 

My mom is frantically dialing the court ordered lawyer. She isn’t getting ahold of anyone. She isn’t sure what to do. My step-dad is just recently released from Prison and she does not want to get him in trouble over this. He is hiding in the bedroom. I am hiding too. I am curled up in my mom’s closet under a pile of clothes, squeezing my eyes closed and crying. I have heard from my mom that my dad was trying to kill me. That he wants to die and that he wants to take me with him. 

The police are in the house. I can hear my mom sobbing and begging them not to take me. They demand to be told where I am. They are in the room. My mom’s room. I am trying to be silent but I am still gulping for air. I can see through the slats in the closet door that they are tearing the room apart. They look under the bed. They look in the clothes basket. They knock everything off the dresser. I am not on the dresser, but clearly they are mad that they have to do this job and they are acting big and tough. It works. I am more scared than I was on my dad’s lap with a gun pressed to my face. 

They open the closet door. I do not wait for them to lift the clothes and find me. I throw the pile off me and while they are realizing what is happening, I make my escape. But I am small. I am a kindergartner. They grab for me, but I hurl my body underneath the kitchen table. I cling to the leg of the table, while they cling to my legs. I am sure they are trying to talk to me and tell me I am safe, but I do not feel safe. I am screaming at the top of my lungs, “NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!” and that is when they finally let me go. They finally see how scared I am. They tell me mom that they will send over a social worker and that they will not make me go to my fathers this weekend but that we will need to go back to court and get this all worked out. 

here I am sitting at the table that I hid under.

The trauma continues through the court process where they make me testify in a room full of adults. Men. Some of them police with guns holstered onto their hips. They will not let my mom go with me to testify because they are afraid I won’t tell the truth with her there. They make me do this many times over weeks and months to make sure that my story does not change. My accusation is pretty serious. They search my father’s apartment and never find the gun, but they also never send me back there. The next time I see my dad, he is on his death bed in a hospital and I am there to say goodbye. 

My exposure to guns did not die with my father. The second time that I held a gun in my hands, I was seven years old. My step father hands me the gun and directs me to point it up the hill in the yard behind our trailer. He tells me he is training me to hunt groundhogs. This gun is nothing like my father’s gun. It is much bigger. It is almost as big as me. My step-father is laughing at how ridiculous I look trying to hold the weight of it up on my scrawny shoulder to steady it. “It’s got a kick! So get ready! It will probably knock you on your ass!” He is cackling at this. 

I hate this. I don’t want this gun in my hands. I am afraid, but I don’t want to prove my step-dad right that I am a weakling good for nothing girl child so I take a deep breath and squeeze the trigger. The shock of the force and echo of the blast knock me flying to the ground.  I want to cry and run away but I want to impress my new dad more. So, I get up. I smile at him. I ask, “Did I do it right? Did I do a good job?” and only after he hugs me do I allow myself to touch the throbbing spot on my arm where the gun has left an already spreading bruise. 

As much as I don’t like the feel of a gun in my hands, I really don’t like having the gun in someone else’s hands even more. I have mentioned that my step-dad put me through a rigorous “training” in some of my previous writings. Basically, he was incarcerated for most of his life and so I believe he put me through exercises that he was put through in prison. Some of the training was fun. He would take me on long jogs, he would count my push-ups and sit-ups and reward me when I met my goals. 100 sit-ups without stopping would earn me a baby doll that I desperately coveted. (I earned that doll by the end of first grade.) but the training got more and more sinister. One of his favorite “drills” to put me through was a “game” where he would instruct me to run up the steep hill behind our trailer and avoid being hit by the bullets that he was shooting at me. “Remember! This is important! It is hard to hit a moving target. Keep moving! Keep zigzagging up the hill! DO NOT RUN IN A STRAIGHT LINE!” 

“………” 

“Ok! GO!!!!!” 

The hills that I would run into while being shot at.

I do not know if he was actually shooting at me, but I know that I was running like hell and I was hearing the gun firing behind me. Whether it was all just to scare me and he was really shooting at me or not, I will never know, but I never got clipped with a bullet. I believed that I felt the bullets zinging around me although in my adulthood I wonder if it was only the wind because how could he have actually been shooting at me? 

The only time I know that he was definitely shooting live bullets at me, was the time that he pointed a b-b gun point blank at my head in the living room of our trailer. I was a child and he was pissed at something I did. I ducked just as the bb left the gun and it shot right over my head. My mom was sitting right behind me and her head while sitting was right where my head was while standing. It was too fast to see where it hit her, but I saw her reel backward with her hands to her face and I again let out my loudest scream, “MOMMMMMMYY!!!’ 

I never saw my mom hold a gun, but from time to time I would see her take out a single bullet that she kept, “In case she needed it.” She would hold it in her fingers and turn it this way and that. I knew what that bullet was for. I lived in fear of that bullet. I knew I would lose my mom to AIDS, but I feared I would lose her to the bullet even sooner. I still have that bullet. I keep it not for the same reason as her, but because I want something that my mother touched.By the time I was a teen, Tom was also lost to AIDS, but still gun culture survived around me. It was not uncommon for me to go on dates with boys out some back road, not to go “parking” in the woods, but to shoot at cans and get to know each other. (In case any of the boys I dated in high school are reading this, I much preferred the “parking” to the shooting. Thanks though.) Anyway, by this time, I had been trained well and I knew that men wanted a woman who was strong enough to hold a gun. I would wear my sexiest cut-ff daisy duke jean shorts and hold that gun like I meant business. If you weren’t looking closely, you might think that I liked guns. You might think my heart was beating face and my face was flush with romance, but no. My body was panicking and I was just already pretty good at controlling it to appear normal. Because to not love guns was not normal.
I can’t tell you all of my gun stories. It would take too long and what is the point. You understand my story, I think.  But even if we didn’t live in the middle of a mass shooting epidemic, I want you to know what it feels like to live in the belly of the gun-loving beast. I never felt safer with a gun in my home.

Debbie Lynn Kellner Arnett

My mom would have been 55 years old today. She would have loved her three grandbabies. She would have drove me insane but also kept me whole. I honestly can’t imagine what she would have been like had she been given the gift of long life. I never imagined my mom as an old woman or as a grandma…even though I always knew I would be a mama.

My kids already know about AIDS, and oppression and poverty and sexism and racism and all of the factors (ok, most of the factors) that led to my parents dying of AIDS, but how to tell them who my mom really was? I never knew my mom before AIDS. She was diagnosed when I was only three months old. The mom that I grew to know and love was depressed, deeply anxious, paranoid and traumatized. She was in a constant confusing state of waiting to die and fighting for her life.

Today I sat my kids down with the blue plastic bin that I have carted around since my mom died. The “my old life before my mom died” bin. I fried up some summer squash and let my daughter share a cup of coffee with me, because her grandma Debbie would have loved that. I wiped clean every sticky jelly spot from our breakfast table and removed every glass of water. I reminded the kids that the photos we were about to take out and touch are sacred to me.

Slowly, I reached back in time and examined each picture with new eyes, just as my babies were. It is amazing how different they all look with a little perspective and an adult’s eye. Like I noticed medicine bottles lining our living room wall when we lived back in public housing. My eyes had never focused on that detail before. Why would a woman who was keeping her diagnosis a secret be so careless as to leave her med bottles out in the open where anyone could see them? Did she not realize people would be suspicious about a 22 year old mom needing so many meds? What was in those medicine bottles in the late 80’s? What medicine was my mom taking at a time when doctors did not have an effective treatment plan for even the most wealthy and privileged patients, let alone a poor rural woman?

Even after all these years, the pictures are still just crammed into the box, alongside childhood journals and funeral home guestbooks. Today as I touched each photo, I began putting them into a photo album that I picked up at Goodwill. Already, having some of the task done, I felt an ease. They felt a little safer. Why did I wait so long to do this simple task that I wanted so badly?

As I was deciding which pictures deserved a spot in the album, I was also pulling aside my favorite ones of my mom. The ones that show her as a full person. The one of her laughing her face off with her sister at my cousin’s birthday party. The one of her dancing with her father at her wedding. The one of her holding onto her parents and niece and nephew for dear life after her sister lost her youngest child in a car accident. The one of her getting skinny again at the end.

There is so much I don’t know about my mom. I dont know her birth story. She was one of eight children. She and her twin came right in the middle of my grandmother’s pregnancies. Was it dramatic because they were twins? These days, they would have most likely been a cesarean birth but 55 years ago…probably not. Did my mom tell me the story and I don’t remember? She told me my birth story a million times. (future blog post about that. Spoiler alert, I came into the world in the front seat of a pick-up truck!) I called my Aunt Brenda to wish her a happy birthday today and decided to ask her to tell me their birth story, but she wasn’t home. Makes sense, it was her birthday. She still uses a landline, so I just had to keep calling and keep hearing the endless ringing. I will try again tomorrow. How lucky I am that even though I don’t have my mom, I have her twin! If not, her birth story would almost definitely be lost along with my mom and grandparents.

I wish I could tell you what my mom was like before AIDS. I wish I could tell you what her dreams were. All I know is that she was spunky and rebellious and found a way to look cute even without a penny to her name. I only ever saw glimpses of that mom though. The mom that raised me was a born again Christian who wore cat sweaters that she bought second hand and a fanny pack (before it was trendy!)

Somehow I got the idea to listen to a song that I hadn’t heard in 15 years, My Immortal by Evanescence. It came out a month and a half before my mom died, but I don’t remember listening to the words until the day my mom died. Imagine being alone in the apartment that your mom just died in at 17 years old and that song comes on out of no where. I sobbed today in my kitchen still remembering every single word.

You used to captivate me by your resonating light

Now, I’m bound by the life you left behind

Your face it haunts my once pleasant dreams

Your voice it chased away all the sanity in me

These wounds won’t seem to heal, this pain is just too real

There’s just too much that time cannot erase

My Immortal by Evanescence

My children had been working on making yard sale signs while I was making a cherry cheesecake (my moms favorite!) and crying and singing in the kitchen. I hadn’t realized that my oldest was tuned in until I felt her arms wrap around my waist and felt her suddenly crying into my chest. I ran my fingers through her hair and reassured her that I was ok, only sad, but ok, and she said, “I know mom, I just wish I could have met her!” and just like that I saw myself pulling all three of my kids into a big snuggle and heard myself telling them that they have met her in a way! “You know how much I love you and you love me? That was the same with me and my mom and that is how she would have loved you. She was funny and loving and kind and fierce and….and…I guess I am a lot like my mom come to think of it, so knowing me, and if you can imagine a person who is like me and my aunt Brenda mixed together, that is like who your grandma was!”

and so I guess I do remember who my mama was. because I am her. I can still feel her deep in my chest. She is that achy spot, but she is also that well of love that I have for my kids, her grandbabies. She is the way I hold my lips when I am angry and the way my hips pop out when I am feeling sassy. She is most definitely my temper but also my joy. It is not the same. I miss her so much. I wish she was here tonight to hold me like I hold my kids and tell me I am safe. but this space and time that I created for her almost brought her to life for me. It almost made her memory real enough for me to hear and see and smell. It is enough for now. I will pull it all back out at the next big milestone. The anniversary of her death. World AIDS Day. but for now, mama. Good night. I love you. I won’t see you in the morning but that is ok. I will remember you and I will love you forever.

my mom and my cousin in the front and me and my step dad in the back.
I definitely make this face.
mom with her dad at her wedding to my step dad.
my mom, her twin and one of their little sisters.
my mom and I with some of my cousins and my grandparents
my mom looking happy and a rare photo showing her teeth before she got false teeth
twinsies
The last picture of my mom and her twin about a week before she died. Happy Birthday Aunt Brenda. I cant imagine losing a twin. I love you.

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.