Long-Term Survivors Family

For a time, I was estranged from my sister Sylvia. While I had gone away to college, she had gotten married. But her husband was a drug user, and she acquired HIV. Later, she had no phone where I could reach her. Besides, I was busy building my career. We had never been particularly close anyway, even though we’re only 15 months apart and can still pass for twins.

Today, however, we find ourselves at the same point in life, looking for peace and comfort as we face our golden years.

I’m grateful she’s survived 36 years with HIV, for so many reasons. Among them is the chance to renew our relationship. I want to make up for the bad things that happened to her, none of which she deserved. I want to give her lots of love. Her survival makes all of that possible.

I had never really considered the possibility of her death, because I’ve always seen her as such a strong person. In recent years, however, I began wondering, Who knows how much longer I will have her in my life? I don’t want to waste those years, whether it’s three or thirty. She’s smart, she’s funny, she’s loving, and I’ve always appreciated those qualities in her.

There’s a strange lesson you often learn in the epidemic. You watch people with AIDS survive as other friends and family members die or become disabled. It happened to our family. Our youngest sister died two weeks before her 40th birthday, from a congenital heart disorder no one realized she had. More than a decade later, the sister with AIDS continues to thrive.

This year our father died. I feel that we’re at a stage where life is more important than ever, as we see more death in our family.

“When I was first diagnosed, the doctor told me I had three to six months to live,” Sylvia told me. “I was very bitter and very angry, because I was told to pack it up, get my affairs in order. [She was 25, but the doctor estimated that Sylvia had picked up the infection earlier, in 1980.] And I think a lot of people gave up because of that. ‘Why am I going to stop using drugs? Why am I going to stop doing this or that? I’m going to die anyway.’ This is what the doctor did to me. It’s funny, how simple words from a doctor, a nurse, or caregivers, can dictate a person’s life. So for two, three years I was waiting to die. It was difficult.”

She had three small children to raise. The thought of leaving them orphaned devastated my sister.

“When I finally told myself, ‘Damn, I’ve been around three years and I haven’t gone nowhere,’ I think that’s when I realized, I ain’t going nowhere,” Sylvia said. Then she laughed. “That’s when I realized I should live my life.”

So she gave up on her death sentence a long time ago.

“The disease taught me how to live,” she said of this new phase in her life. “It taught me that I’m not just alive, but that I’m living.”

After she overcame the addiction she picked up through her husband, who had since died, Sylvia emerged from her old life triumphant. She worked full-time as an HIV peer counselor, including several years at TPAN, the non-profit HIV/AIDS service organization that publishes POSITIVELY AWARE. She had a beautiful home and raised three children on her own.

Today, when Sylvia comes to Chicago from her home in Wisconsin to see her HIV specialist at Northstar Medical Center, I take her to lunch, and then we go thrifting. I try to take the day off from work if I can to spend time with her.

This summer, I was able to visit Sylvia a couple of weekends. We go out to lunch, go thrifting; we walk her dog Hercules to a beautiful public garden nearby. We have sleepovers, talking well into the night or watching true crime stories on TV.

Sylvia lives across the street from a large park. I tell her to never move; the view is so beautiful.

But living on her own is costly now that she’s on disability. After paying bills, she has very little left for day-to-day expenses. But Sylvia says it’s worth her peace of mind, not having to deal with the rules and regulations of any housing that’s been set aside for people in need. And that’s if it’s available. Under typical restrictions, Sylvia says, you can’t have a dog that weighs more than 20 pounds. Sylvia’s dog is a playful 70-pound pitbull mix. You can’t “do drugs,” but her occasional migraine headaches—and accompanying nausea—are controlled with marijuana.

Sylvia with Hercules. 

“Why can’t I get Ryan White [funding] to give me $200 a month to go towards my rent?” she asked. “I’m in heaven. I’m in peace. I have my dog. I pay my rent, and $200 dollars is what I can put towards my light bill. People say I’m in Kenosha, what can I expect? But it’s like this everywhere. ‘Oh, we got this funding to do this,’ and then they add all these stipulations so that you don’t qualify for it. How are they helping me?

“So sometimes it means going a little hungry,” Sylvia tells me. “That’s okay. In four days I’ll get my money and I’ll get food. You’ve got to learn to live that way. I’m grateful for the little bit of rice that I’ve got. I’m grateful for three eggs in my fridge. It’s things like that, Enid. Realizing that at one point I was homeless, that at one point I didn’t have food. To have three eggs is like I’m a rich person. But the most important thing is that I have a roof over my head. I have somewhere to lay my head.”

She has family and friends who can occasionally help her out financially, even if it’s only with a loan. Still, sometimes she’s down to those three eggs.

Yet, Hercules gets his nails clipped at Petco, if Sylvia can get a ride. She recently paid for both his grooming and that of her youngest son’s dog, when her son was strapped for cash. The next time, however, he was able to pay back the favor. Somehow, she gets by.

Awww, Enid, sometimes I really wish I could work,” she tells me. “Financially, it’s difficult.” She spends 78% of her monthly income on rent. (The standard cost should be 25–33%.) She receives additional funds for food.

She would love to go back to counseling survivors of domestic violence.

The deficits of money, of health, and of a shortened work history echo the challenges many people face, even those without HIV. The extra challenges of living with the virus, however, include stigma. But when you don’t give a damn about the stigma, as Sylvia doesn’t, you’re that much more free, that much further ahead. She believes in taking care of yourself, especially through releasing stress.

Sylvia says that while at one point it was important to her to have a partner, it wasn’t about being taken care of. “I think it was more about wanting to feel loved. (Long pause.) If you’re in a relationship to get loving, let me break it down … that is not the way to go. You have to love yourself. I am happy to be alone. I’m not looking. I feel that with my goddesses, my god, my light of love and peace, which is what I go by,
I’m content. But if it’s meant for me to have someone, a person will come along. I’m so happy where I’m at right now.”

I don’t like support groups because of the whining,” she continues. “I would like arts and crafts with other people, or say, ‘Let’s go as a group on a cruise.’ That would be fun.”

Although she believes in a positive outlook as a spiritual practice, she can be negative. I wonder if this is part of the AIDS-related dementia that she was diagnosed with long ago. I know that it can lead to personality changes. It makes me want to be supportive of my sister all the more.

Whatever her difficulties, Sylvia is here and I have her company to enjoy. I no longer take it for granted.

Sylvia said she would be very lonely without Hercules. She sings to him a song from a commercial about a man and his dog—You’re my buddy, my pal, my friend, you’ll be with me to the end, and wherever you go, I want you to know, you’re my buddy, my pal, my friend.