No one ever told me that my uncle died from AIDS, not “pneumonia”

December 1st was World AIDS Day, and December is AIDS Awareness Month. Here, a contributor describes memories of her beloved uncle, HIV/AIDS stigma, and the moment she learned of his true cause of death more than 20 years after his passing

I was 23 when I realized it wasn’t pneumonia that had killed him.

When I Google my uncle, nothing comes up. His life does not exist online, but it exists in the dusty collection of Chinese porcelain figurines, loose gems, Asian woodwork, and crinkled newspaper in my parents’ basement in Northern Virginia. The official documents of his life include yellowing birth and death certificates, tucked away in a folder somewhere with my mom’s valuables: the house deed, marriage license, citizenship papers.

I have fleeting memories of this man, my mom’s younger brother. He seemed to always be at the house when I was a little girl, joining our family for dinner or watching TV on the couch. If he wasn’t there, he was on the other end of the cordless phone with my mom, the two of them plowing through fully charged phone batteries without mercy. But who was this man I called uncle, who my mom said adored me, gave me frilly dresses, and bought me organic strawberries from Whole Foods? I struggle to remember. I can only recall fragments—the handful of stories my family told me when I was growing up that captured snippets of his personality. He loved cats and jewelry expos. He lived in a part of Washington D.C., where, in the early ‘90s, taxis refused to go to after dark. He drove a beat-up blue car with manual windows and no air conditioning that drove my mom crazy in the summer.

His “roommate” Larry died a few years before him.

At my aunt’s house nearby, old photos sit in the coffee table drawer, brittle and folding at the corners. I go over for dinner often when I’m in town. She takes out the photos of him every time and tells me the story behind each one, cracking herself up as if it’s her first time hearing it.

“This when he first come here,” she says, holding up a picture of my uncle when he first arrived from Thailand. “He have so much hair then.” “This one, I think we at a friend’s house.” “This when he is a baby.”

Recently I asked if she knew he was gay.

“We don’t know for sure. He never tell us.”

I remember watching my uncle stumble around our house in his robe, wheeling the IV stand with him as he inched his way to the bathroom. He had slept on the pullout sofa bed in the family room, which had been converted into a makeshift hospital room. The IV stand and several trash bins stood at arm’s length from him. Some had regular plastic liners while others were designated for syringe disposal. My mom, once a registered nurse, changed the bags and replaced them with fresh ones every few days. We were no longer allowed in the family room unless my uncle called for help, and my brothers and I weren’t allowed to have our friends over.

In there, grownups spoke freely: making plans, discussing the future, the weather, his medications. I watched from the kitchen, my feet pressing into the cold tile, stretching into the doorway to hear the conversations between nurses, relatives, my parents, my uncle, and his visiting friends. His friends came all the way from Washington D.C., and brought him Kung Fu movies and stuck around to catch up if he was feeling well. On some days, he was chatty and upbeat like his usual self. On others, he struggled to blink and hold a conversation.

But as far as I knew, he was simply “sick.” I remember asking my mom about “that strange spot” that appeared on his forehead. She told me it was nothing. I found out almost 15 years later what it really was: a lesion from Kaposi sarcoma.

My uncle’s D.C. townhome was still full of his “roommate” Larry’s belongings, but he was already making plans to get rid of his own possessions. One by one he pushed his Chinese porcelain figurines on to my mom and had intricately carved bookcases surprise delivered to our house.

“Lydia, you’re not going anywhere until you put on your coat,” my mother ordered. “Hurry up.” It was Halloween night and my parents were headed out to a party. I trailed behind my brother and my uncle, who were already zipped up and shivering on the front porch.

A few weeks earlier at the start of the school year, my mom had broken the news that we were moving to Thailand. It was an abrupt, unexplained move to a country that didn’t celebrate my favorite holiday. We were scheduled to leave by June, making this my last Halloween ever. The stakes had never been higher for an eight-year-old. My uncle witnessed all of my fussing and volunteered to take my brother and me trick-or-treating.

The cold air crept in through the seams of our coats as soon as we stepped on to the pavement. It was barely 6 p.m., and the usual train of costumed children chugging along the sidewalks was nowhere to be found. I could see my uncle’s breath every time he coughed. We didn’t make it to more than three houses before he announced that it was time to go home.

“But we just started,” I pleaded.

He nodded. “Come on, let’s go home.”

I was the only one who saw the whole thing, but I was too young to know what I was really watching. It was trash day. My dad was in the kitchen disassembling the bag from the bin as usual. He shimmied the bag out, lifting it up by its drawstrings—then he let out a small cry. The trash bag dropped to the kitchen floor. He grabbed his finger.

A syringe—the kind that nurses used on my uncle—poked through the white plastic bag. It had pricked my father.

The house buzzed with the familiar murmurs of grownups in serious conversation. My mom was on and off the phone and in and out of her bedroom. After hours of deliberation, my parents emerged from behind their closed bedroom door and asked my uncle to move back to his Washington D.C. townhome.

“But he didn’t do it on purpose, Mommy,” I said. My brothers and I had gathered in the kitchen to find out what all the commotion had been about. “He’s sorry.”

I remember hearing “HIV positive” for the first time. I remember being told that my dad would have to get tested for it every year for the next 10 years because it could show up at any time.

“What’s HIV?” I asked.

“It’s when your body stops making white blood cells,” my mom said.

“Oh. Are we still moving to Thailand?”

“Yes.”

I only saw my uncle a few more times after that. The first time was in the spring, when the weather warmed up and strawberries were back in stock at Whole Foods. It was a tradition he had started before he got sick, stopping at Whole Foods on the way to our house and filling a produce bag with the biggest, juiciest strawberries I had ever seen. I was playing upstairs when I heard his voice from the family room. I ran downstairs to greet him. On the coffee table was a bag strawberries, robust and bursting with life. On the couch, my uncle smiled. His hair had gone winter white.

I saw him again over the holidays, but not for festivities. This time, we went to his house in D.C. He was back in his robe and had lost his hearing. I tinkered with figurines around his apartment while the grownups talked and repeated things at increasing volumes. That was the last time I ever saw him.

It had always been “pneumonia” that killed him because he wasn’t out to anyone in the family. Larry was his “roommate” until the day he died, and most family brushed off rumors of anything more as mere speculation. Gossip.

So imagine my surprise when I called my mom a few weeks ago and asked her for the story—the real story. She walked me through it from the day my uncle was dropped off unannounced at our house, one door away from death. She hadn’t said more than a few words about it for more than two decades, and now she was talking so long that my iPhone got too hot to hold, and I had to plug in my earphones.

“Remember how he used to bring the gigantic strawberry from Whole Food?” she asked. “Remember he want me to keep the sapphire ring for you until you got older?”

She is currently preparing to sell the house. When my dad retires next year, they will move into a dream home for the next chapter of their lives in Hawaii. She spends long afternoons sorting through all the items my brothers and I have left behind—marked-up books, unrewound VHS tapes, and an entire kingdom of stuffed animals. My uncle’s belongings in the basement remain largely untouched.

“I don’t know what to do with them,” she said. “Part of me wants to keep all of it, you know just because it belonged to my little brother.” She starts to cry. “Sometimes I look at them and I say to him, ‘I’m sorry. I can’t keep everything. I just have to let them go, okay?’”