Around the time that I was 12, I remember reading an article about HIV and AIDS from a magazine in our dentist’s waiting room. There was a sentence like, “Someday HIV will become so prevalent that the person sitting next to you at church will have it.” I kind of chuckled to myself, thinking, “That could never happen to me, because I sit next to my dad at church. He’s our pastor. He’d never get AIDS.”
My parents came here in the ‘70s from Mexico. I was the first one from both families to be born on this side. I didn’t really speak English until I was seven. My father was a pastor at a Baptist church in Mission, Texas, in the Rio Grande Valley, bordering the Mexican state of Tamaulipas. On the weekend we went across the border to go grocery shopping and visit my mom and dad’s families. We’d have one birthday party in the U.S. and one in Mexico. I’d say to my cousins on the other side, “I come to your house, why don’t you come to mine?” And they were like, “It’s not so easy.”
When I was nine, my parents told us that we were moving to Nebraska. The Evangelical Free Church of America wanted my father to come to Lexington and start a Spanish-speaking church. A meatpacking plant was opening and they were preparing for a big influx of Hispanics. My young sister and I were devastated to leave our friends, family, everything. We pulled up to our new house in this U-Haul, and there were maybe 20 people in our front yard waiting for us with big smiles. I had never come across Caucasian people to that extent.
The plant opened a few months later. My parents quickly became the town’s social workers, you could say. They taught GED and ESL classes on Saturday morning at the church. Sometimes we’d have a long line at our house of people waiting for help filling out documents. I shared my bedroom with pregnant teenagers. People in the community would naturally come to my parents for assistance.
Six years after we moved, when I was 14 and my sisters were 10 and four, in April of 1996, Dad started to get weak and fatigued. He had stomach problems. In May, he had to be hospitalized for an entire week. I didn’t know what was going on; we just knew it was very bad. I was in the waiting room for the most part, taking care of my sisters. Mom cried on the way home every night, but she wouldn’t say anything to me. I was scared, anxious, biting my nails. I didn’t ask her. I knew that it was something big and our lives were going to be changed forever. I remember thinking, “Mom is too hysterical for cancer, but too calm for AIDS. If he had AIDS she’d be way more hysterical.” At that time, the two worst diseases were cancer and AIDS, and I had never seen this type of reaction from her.
I knew exactly what AIDS was. Magic Johnson had interviewed kids for a show about HIV and AIDS for Nickelodeon, and I was so compelled by it. I didn’t think so much about the stigma; I thought about the kids who had it, like Ryan White. It never came up in our mission work and we never talked about it in house. But I was always drawn to serious topics like that.
At some point Mom said, “He’s very ill.” I thought, “He’s going to die.” And I went in and saw him and he was very weak and frail. Then she sat me down by myself and said, “He’s HIV positive.” She went into detail about his condition. I want to say his T-cell count was at 18. I was very worried about my sisters; I wanted them to know. I didn’t want them to be lied to. I asked, “Are we 100% sure?” And she said, “Yes.” We all had to get tested. That was very, very scary. We didn’t get the results back for about a week. I was so nervous during school. It was a period of pure anxiety.
Dad came back and was on bed rest for a few weeks. He was very quiet. It was like he couldn’t look at us in the eyes. I’d say “Do you need anything?” and he would just nod. He was in a very depressed state.
A month after Dad left the hospital, Mom said, “Next week we’re going to the church’s board meeting. We’re going to let them know.” Dad wasn’t fluent in English so he needed Mom’s help. What happened was incredible: everyone was very supportive. My father was really loved in the community. I kept expecting rumors to get really bad, but they never did. I was always thinking, When is this going to blow up? In high school there were a couple of people of who were like, “Your dad has AIDS,” and I was like, “Yep, he does.” And that was it. The entire community could’ve been talking behind our backs, but we never knew about it.
We all knew what he had. My younger sister would see the FedEx truck and she’d say, “There’s Daddy’s medicines!” We were part of the Nebraska AIDS Project; we were assigned a social worker and I went to support groups with him. I went to his doctor with him sometimes, since his English wasn’t great. It didn’t feel like too much; I wanted to be involved. Our family was a team. We were all in it together, supporting each other. There were times he would look at me and say, “I don’t feel good; my stomach hurts.” But otherwise, we led a pretty normal life. He was able to preach. They would come to all of our events. I was on the dance team and track and basketball. I talked openly about his disease in junior high and high school to my close friends.
In 1999, I left home to go to college 45 minutes away in Kearney. I didn’t come back that often; I had two jobs and school. I suddenly had different priorities. I think I was relieved to be away, too. I was like, “I’ve had enough, I have to go.” I knew they’d be okay.
My family took their last family vacation, to the Black Hills in South Dakota, in the summer of 2002. They asked me to go, but I had to work. Dad looks thin and frail in the pictures. I think he just starting to become…sick. I don’t really know if the medicine stopped working. But that’s when it all started. By Thanksgiving, we had to help him stir in the kitchen. By Christmas he was still able to talk and joke around, but he was pretty much bed-ridden. This was worse than when he was first diagnosed: then he was sick, but he didn’t look sick. This was it. Now you could physically see it. He was not able to stand up, use his hands, do anything on his own. I was angry. He would say, “When I go back to work,” and I would say “You’re not going back.” He would look at me with sad eyes. I just wanted us to speak the truth. My family would say, “Why are you being mean?”
A month after his 50th birthday, in February 2003, Dad passed away. My sisters and mother and I watched his last breath. I looked at my family and said, “It’s over.” My mom fainted. My little sister ran to her best friend. My other sister ran to her boyfriend. My mom started planning the funeral that night. There was a lot of tension. I don’t remember hugging my mom or my sisters. It was just, Let’s get down to business.
The funeral was quite the event. It was a bilingual service, like four hours long. I remember looking back and seeing everyone from my childhood. People sang and gave speeches. Some of my friends were like, “You’re acting as if nothing happened. You’re laughing and being normal.” It was overwhelming. I felt numb.
What makes me feel awful is that I didn’t provide more support to my sisters and mom. I wish I could’ve been more supportive, but that was how I was feeling at the time, like “Let’s just get this over with.”
That was 11 years ago. We never found out how he got it. Mom said, “Is there anything you need to tell me?” He said no. He never said anything, and we never asked. He was always very playful with us, but my mom would say, “He’s a man, he keeps his emotions to himself.” If he were still alive, I would be more probing. But there isn’t anything I can do.
I didn’t know how to talk about it with my family during his death. Now I’m the one who wants to bring it up. My little sister once was like, “Why can’t we just be normal, like ‘How was your Friday night?’” And my middle sister was like, “Because we’re not normal.” And it’s not that I want to make everyone cry—but we didn’t talk about it after he died. We didn’t grieve together. We stopped talking about him altogether.
Our roles have switched: they want to distance themselves. I want to honor him. We need to shake off [the stigma] so we can live our lives and be okay with and proud of our situation. This happened to us and we need to turn it into a positive thing.
Every year I would say to my family, “I’m going to get involved this year, I’m going to do something.” I emailed the Nebraska AIDS Project and said “Do you have support groups for people who lost family members, like parents?” Nope.
My mom worries about me being so open about this. I think she’s referring to the [response from the] Hispanic community. If we think the community at large has stigma, it’s even more intensified within the Hispanic community. Not only are we dealing with the fact that he died of AIDS, but we’re a minority, and a community that typically does not talk about this. My mom still thinks that a lot of Hispanics around Lexington assume he died of cancer. I’m like, that’s not my problem. I’m not going to lie. This is my life.