The New York Times calls it a “unique affliction,” a trauma matched only by death-camp survival. But for us, Lazarus Syndrome, named after the biblical figure Christ restored to the living, is just the price we have to pay for life in the protease era. POZ spoke with five PWAs about the long march back from death’s door.
Home New York City
Occupation Director of treatment education, Community Health Care Network; founder, the Family Legacy Project
Tested Positive 1991
The Dying Game
Thanksgiving ’95 I thought, “This is it.” I developed pneumonia, and my fever went up to 105. The doctors were losing my vitals. I said, “Please bring my kids over.” When my mother got to the hospital with the kids, seeing me in this situation, both of them just broke down. That tore me apart. When they took me to get X-rays, two technicians had to hold me down. But my kids kept flashing in my mind. I said, “You know what? I gotta live.”
Some time before that, I had asked a good friend to take care of my kids if anything happened to me. She came to the hospital and said to my mother, “Michelle told me she wanted me to have the kids, but you’re their grandmother. You should take them.” My mother said, “Sure, I’ll take them -- if the government gives me some money.” When I heard my mother say that, I told the nurse, “I’m pulling all these tubes out of me, and I’m going home to take care of my kids.” I went into a shaking fit and broke out in a crazy sweat. When the doctor took my temperature, it was down to 100. The next afternoon, they discharged me.
When the welfare reform law went into effect in ’97, all my services were cut. Boom! Here I am, getting $106 every two weeks. And because I’m not a citizen, I was no longer eligible for additional assistance. For a while, I became angry and bitter, and drove my partner away. But I enrolled in training for women to do advocacy and treatment work because I needed a job to feed my kids. When I started working, I began taking better care of myself.
I started taking my first protease inhibitor, Crixivan, in January ’97. But it wasn’t until I saw my daughter, Raven, doing well on her HIV meds that I felt hopeful about the two of us and our survival. I started getting complications from the ddI with my liver, and I developed neuropathy in my right leg. And I was out there, going to the conferences, heading up meetings, up late at night -- I missed my middle doses a lot. I never had an undetectable viral load. Now I’m not on any treatment, and my choice of drugs is very limited. But I feel full of life. And more hopeful.
My daughter is going to be nine in June. She’s going through some difficult issues. She’s just realizing what she’s living with, why she has to take all these medications. She doesn’t want to take them right now. In the past few months, three of her little friends have died. I’ve got to deal with pre-puberty too. She’s already asking me, “Mommy, when I get older, can I have a baby with my husband?” I tell her, “You have to keep the focus on you. You have to be healthy, because right now, honey, we don’t have a cure.”
The Way She Lives Now
When I thought I was going to die, I looked at what it was that helped me. It wasn’t the medication -- it was the family therapist. I got a child psychologist to work with my kids, too.
My son is growing up with me as his mom -- an out lesbian who does advocacy work and public speaking. He’s 12 years old, and his male side is kicking in, and we’re having clashes.
I have a lawyer helping me get my citizenship. I’ve got a scholarship to go back to school. And I won a cash award in December from the Fund for the City of New York. I’m using it as seed money to fund the Family Legacy Project, which I founded to be run by and for women who are positive. If I’m not helping somebody, mentally I start breaking down and then I get physically sick.