When my Uncle Carl was seventeen, he worked with my grandfather as a helper on the pipeline. Pipeline welding isn’t an easy job, particularly in the summer. Your whole body has to be covered: from a long-sleeve thick khaki shirt down to steel-toed boots, no matter how hot it is. These clothes and the helmet covering your face, eyes, and the top of your head are designed to protect you from sparks that come off the rod. Despite the layers that dehydrate you, somehow the sparks still manage to find the tiniest open crevasses and cause burns or even more serious damage (like the hole in my dad’s ear that keeps him from swimming). It can be miserable work, they say: lifting steel pipes, welding them together, from five in the morning until well into the night.
My uncle had a flair for the theatrical. He once staged a way to get out of work, a scheme no more sophisticated than a kid putting a thermometer near a light bulb. He jumped down into the deep hole where the pipe was to be welded and laid there until someone found him. When they finally came, he was “barely conscious” and couldn’t move his legs. My grandfather called an ambulance to take him to the hospital and called my grandmother to meet them there. By the time she arrived, the doctors had already taken Carl into a room and were monitoring him. He was showing signs of paralysis from his waist down, but the cause was still a mystery the medical team was trying to unravel. My grandfather was in the waiting room, crying because he blamed himself. My grandmother simply walked into Carl’s room, where he lay with a tangle of cords that attached him to machines. The steady beeping sound of his heart were the only signs of life in that space. Grandma spoke in a drawl that only a provoked, rural Texan woman has: “Carl, they’re about to come in here and scan you, and poke you, and prod you until they find somethin’ wrong. Now, you can either get better, and I won’t say a word. But, if you keep lyin’ there, they better find somethin’ wrong, or I’ll make somethin’ wrong.” Shortly after she left the room, Uncle Carl regained the ability to wiggle his toes.
Simian immunodeficiency virus adapted to live in the body of a person, and then the window was pried open. It spread through the villages of Cameroon, and then through the rest of Africa and the world beyond, until it found its way to a club in New Orleans. There, it made its way into the lifeblood of a man who lived next door to us: my Uncle Carl.
When I’m trying to create a timeline in my head, I imagine how the virus, that would later come to take Uncle Carl, spread and became a silent, shattering problem. They say it started somewhere in Central Africa, when a hunter killed a central common primate (even its name is unspecific, undramatic, and anonymous). Simian immunodeficiency virus adapted to live in the body of a person, and then the window was pried open. It spread through the villages of Cameroon, and then through the rest of Africa and the world beyond, until it found its way to a club in New Orleans. There, it made its way into the lifeblood of a man who lived next door to us: my Uncle Carl.
By the time he was quietly and secretly living with HIV, he had chosen advertising design over welding, coffee over theatrics, and east Texas over New Orleans. I was young when he lived this life. My bed was under a window covered with blue and white striped roman curtains. They blocked out the motion of hummingbirds that would congregate to eat breakfast on a giant honeysuckle bush that grew up the length of our television antenna. He would arrive only a few minutes after they’d started eating, wanting to drink down his own breakfast in the kitchen with my mom. The smell and sound of the coffee gurgling would wake me up. He’d stand on the blue tiles with the china doll white porcelain cup in his hand. Uncle Carl’s hair was always uncombed and he’d steadily run his free hand to try to smooth down the cowlicks. Most mornings, he wore a surprising contradiction of clothes that matched and somehow didn’t: a red and yellow flannel shirt with knotted yellow sweatpants. Mom would sit down at the table and he’d follow. I’d come in and fold my left leg underneath me and dangle my right from the red chair with the yellow pear print. Uncle Carl would impart some offbeat brand of wisdom.
“You know, Meg,” he’d say. “If you ever decide you’re going to be a pop singer, don’t throw in fake words. Real ones are good enough; there’s a whole dictionary full of them. All of those oohs and ahhs and mmbops… What is that? Those aren’t words.” Or: “One of these days, you’re gonna pick a prom dress. Shoot for more than glitter in a pattern.”
Many times, he would do impressions at the table. Our homophobic, bullying aunt and uncle became oversized versions of themselves, reimagined as Aunt Fat and Uncle Stupid. When I wasn’t in the room, the conversations got much darker. The thin, wood paneled walls of my room did nothing to muffle his voice. I once his confession, without parody: “Nothing is sadder than an old gay man.”
As it turns out, the thing infinitely sadder was not growing older at all. My Uncle Carl died of pneumonia at forty-five years old. Under normal circumstances, his body would have fought off the germs, and he would never have consciously known a cause for concern existed. But AIDS is a patronizing disease. Pneumonia is quick to come when your white t-cell count is only around twenty. Even I, for whom most of the world was still entirely shrouded in mystery, knew that a cold from my ten-year-old hands could kill him. Doctors in their tidy white coats and nurses in pale blue scrubs would say, “That’s bad. His count is way too low.” I knew no one should be forced to count cells like M&Ms or pennies.
In the three months between the announcement to the family and his passing, a man six feet tall dropped beneath one hundred pounds. His feet became so sensitive that he couldn’t have a blanket over them, and he didn’t want a fan on so that its wind wouldn’t touch them. He couldn’t get out of bed, so he rang a large golden bell for whatever he needed. For years after, the sound of that bell seemed like it could still be heard bouncing off of the hallway walls.
My own part in his care was small, but I was present. Terminal illness is no respecter of age. Uncle Carl had a hospice nurse for his medical care, but there were always other needs to be met. Every afternoon, I would ride the bus to my grandmother’s house, where he was living in a guest bedroom. I would carry a glass of water down the hall and sit carefully by his feet. My mom pulled up in a chair at his bedside. We would listen to his beloved classical music, still totally inaccessible to me as a genre, despite my deepest desire to be able to connect to it and to him. He would watch the driveway to see if his partner, Bill, would drive down that day, but he almost never did. Bill had cracked under the stress of the illness, running out of Carl’s room one afternoon, bitterly weeping, with me clumsily failing to comfort him on his way out.
We all watched others as they came and went past the driveway. At that time, a gay man dying of AIDS in rural Texas only provoked hard, fast, and almost universally ignorant reactions. Some of our neighbors indulged in gossip, but avoided my family at all costs. Others brought dishes by the house but stayed as far away from the bedroom as they could.
“You know you better all wash your hands,” an aunt told me, as she dropped off a plate of cheesy chicken spaghetti. “You can get it just by touching them.”
“It’s bloodborne!” I snapped back, before leaving the room.
It had not been easy for me to come to terms with his illness. Everyone knew I would struggle, and Uncle Carl knew this most clearly of all. He had been a fixture at all of my games and an unyielding presence at every honor roll ceremony, but he made sure I was out of the room when he dropped the news on the whole family. After a rare gathering, where we had all eaten my grandmother’s gumbo together, he asked them to stay around for a while: “I have something I need to tell everyone.” I was sent on an errand, a normal enough task for the youngest in the family and the quickest to become disinterested in adult conversation. When I returned, I was too oblivious to understand the paled expressions on everyone’s faces.
For a while, I was spared the agony of knowing. Uncle Carl spent that time “randomly” giving me his possessions, jewelry mainly. Not long after, I was given the news by my mom on the way home from softball practice. My white t-shirt with its blue number five was sticking to the back of the car’s leather seat. My face was flushed, like it still gets after I’ve been running. Wheeling down University Drive, Mom’s voice had lost its certainty when she said, “Meg, Uncle Carl has AIDS.” In that way that kids have of knowing without the benefit of the facts, I understood exactly what that meant: it was a death sentence. And so, to pay him back for dying, I decided to not see him for days.
At some point on that drive, maybe just to numb the feeling enough to make it home, Mom decided we need to stop at our favorite bookstore. I looked down the aisles at the hundreds of books: How to Eat Fried Worms, Fourth Grade Rats, Maniac McGee, Goosebumps. The letters were all jumbled. Words were arranged nonsensically. Gazing into the blurred shelves, one title was clear: When Heroes Die. It wasn’t a cover that would normally appeal to me. It’s dusk jacket sported a boy looking forlorn, holding a basketball. But in that moment, it felt almost instructional, like something I needed to understand: how to breathe in one moment, and breathe out the next. I picked it up. My eyes cleared again, and I saw the book was about a man with AIDS, and the relationship he had with his nephew.
We left that day without the book, but Mom promised to go back and get it for me. When she did, she roamed down the aisles in search of it, but came up empty. She stopped, and asked the clerk if he would help her find it. He replied, “You know, a man just came in looking for that book. He said he wanted to buy it for his niece, and he kept going on about how much he loved her.”
Uncle Carl arrived with the book in hand a few days later. He’d written an inscription into the inside cover and left it with me to think about. It read, “We are all a tapestry. We are all connected one to another. Our differences do not unravel the tapestry, but make it brighter and richer.”
The year he died, he was one of 51,414 others taken by the disease. Maybe he was 42,844. I can’t help but think of how much dimmer the color is, a dimness multiplied by so great a number than I can hardly comprehend. I wonder: how many other hues do I not know? The gray and greenish cast of a chronic depressant? The pale brown of man who often hocked his mother’s paintings for extra cash? A brilliant, indigo Impressionist artist? The red and yellow flannel-colored patterns of a man who always showed up before the hummingbirds?
Megan is a writer and photographer from New Orleans, LA. Her loves are her girls, her city, Brandi Carlile, and the New Orleans Saints. Megan’s writing has been featured elsewhere in HerStry and in the upcoming edition of the Edison Literary Review. Her photography will appear in the May edition of Beyond Words. You may find more of her work at www.meganlea.net.