After the Sun sets : Living and Dying with AIDS

Award Winning story by Tracey Philips

Since December, 1981, over 548,000 Americans have been diagnosed with AIDS, and more than 343,000 lives have been claimed. While we know this is devastating for those left behind, how else does it affect them? How do they handle their grief and how have their lives been changed? Following are the stories of two people, one a community college counselor who lost his lover and life-partner of 20 years, and the other a retired waitress and mother who lost her adult son.

   For Christopher Leason, receiving the news every six months that he had tested negative for HIV did not necessarily feel like cause for joy.

   "I'm negative ... strangely enough," he said.

   Christopher, 62, knew he would lose his life-partner Dennis Zaborowski to AIDS. For six years, though, after Dennis' diagnosis, he lived virtually illness free, even with a T-cell count of zero. "I always felt there was no need or reason for jubilation in front of somebody who's positive," Christopher said.

   Dennis had contracted the disease through sexual activity, and was diagnosed simultaneously with HIV and AIDS when he became ill with pneumocystis, an opportunistic infection, in 1990.

   He had never been tested for HIV.

   "He claimed that he would know if he had it," Christopher said. "It was a mistake."

   It was not until the weekend in 1990 when Dennis became very ill that Christopher said, "You've got to get tested. This is it. We have got to know whether you have it or not."

   Christopher said Dennis was in very deep denial up until the doctors finally said, "You've got pneumocystis-that means AIDS."

   Dennis got over that bout with pneumonia, but the knowledge that he was living with AIDS dramatically changed the way he and Christopher lived their lives.

   "We lived much more for the moment," Christopher said. "A lot of things that one would put off-traveling and doing various things-we did immediately."

   The pair traveled to Singapore, Australia, Tahiti, Hawaii, South America, the Caribbean and all over Europe, and even lived in Paris for several months.

   Initially after Dennis' diagnosis, though, Christopher felt fear, guilt, anger. "We had some tough times. The anger would come out in strange ways. We shouted at each other, things like that," Christopher said. "It was not a judgmental anger, just unconscious, stupid anger that I was going to lose him."

   Dennis felt it, too, said Christopher. "He was angry at the institution; I believe that's where he directed it. At the government bureaucracy-health care and drugs, things like that," he said, referring to the lack of health care coverage for gay couples and to the Food and Drug Administration's hold on experimental drugs.

   It was this that spurred Dennis to become involved in ACT-UP, a gay rights advocacy group. "They were the ones that did all the rabble rousing," Christopher said. "They went to Washington and marched and went to the Center for Disease Control, and were instrumental in having them release drugs earlier. [ACT-UP] wanted to get these drugs out because people were dying. That was one of their big efforts, and they succeeded."

   At the time of Dennis' diagnosis, both thought they would only have another year together, at most. As the years went by and Dennis remained virtually free of symptoms, Christopher felt he was being given a gift.

   Those six years were also nerve-wracking, however. Christopher said it was extremely stressful to wait and wonder when Dennis would be taken away from him...

   Dennis died exactly at sunset on June 30, 1996, as he had always said he would. "That was a special time for both of us," said Christopher. We always went out and watched the sunset together."

   It has been six months since Dennis died. Friends have been telling Christopher that he needs to get out of the house; that he should not stay home alone; that he is too sad.

   'I feel like I'm doing something wrong," he said. "Like I should be stronger ... I should be out there. But then I think, 'Leave me alone."'

   "If I could write one thing in a grief book," he said, "it would be, 'If a person is grieving, and they want to grieve, let them grieve."'

   He said he is comfortable being home alone. "I really like being there with [Dennis]. I like the fact that his urn is there, and certain things about him are there, and I light a candle and I talk to him. That's not so sad," he said.

   Christopher said he is more cynical now than he used to be. "I think one feels just a little more fragile or vulnerable, not knowing what to expect out of life," he said.

   He finds comfort, though, in recalling his life with Dennis. "When I think about him being gone and I really feel bad, I realize ... I had 20 good years with somebody, 20 good years, and so I'm not really alone," he said.

   "It's so great to think that that's possible, and that you have not spent your life on earth without that connection, because to me, that's the most important thing."

   While Christopher is dealing with his grief privately, Shirley Reyna has reached out, finding strength and solace in the AIDS community.

   "Okay, I'll just commit suicide when he dies," Shirley thought when she found out her son had tested positive for HIV. It was the only way she could get through the first few months.

   She and her son John had always been very close. "He was my support system," she said. "He is still supporting me, because he is the one I'm trying to be strong for."

   John was diagnosed in February, 1992. He had contracted HIV through previous use of intravenous drugs. "I was angry at everybody in the world. I didn't understand why, when he had gotten himself straightened out and had a wife and kids, this would hit him," Shirley said.

   Other than the initial shock, Shirley said she was in denial for three years. John was still working, playing baseball and taking care of his family, and although he was taking lots of medication, his life still seemed fairly normal.

   In October of '95, after previous bouts with opportunistic infections, he became seriously ill for the last time. He was hospitalized for five days and sent home when doctors said there was nothing else they could do for him.

   "When they told him that, he told them to take out the needles," Shirley said. "He wanted to go home."

   Shirley said she was hysterical. "I couldn't believe it was actually happening. I had known for four years, but never thought it would really happen. The mother part of me wanted to scream, 'Do whatever you can to keep him alive,' but when he made his decision to go home and be with his family, I accepted it."

   "It scared me to death," she said.

   John had a wife, Cindy, and three boys at home, ages 16, 10 and 8. (The boys' names have been left out to protect their privacy.) Doctors expected him to live for three to five days. Instead, his condition improved, and he lived for another month without any medications. "It wasn't the quality of life that he had before, but at least he could function," Shirley said.

   Shirley was able to come to peace John's decision to come home and forego further treatment. "I realized he was doing the right thing by letting go. My only hesitation was because I wasn't ready to let go," she said.

   John died at home on Nov. 30, 1996, at age 38.

   Shirley is now a volunteer for the Foothill AIDS Project in Claremont. "I have so much more to give because of what I have been through with my son," she said.

   It was about five months prior to John's death, Shirley said, when she decided she wanted to volunteer her time to AIDS services after he was gone. She started at F.A.P. one and a half weeks after he died.

   "Because of John, I have changed personally. Things that mattered before-material things-are no longer that important. If I had all the money in the world, it would not have saved my son," she said.

   Shirley feels it is her work at F.A.P. that has kept her going since John's death. "My whole family expected me to fall apart, and this helped me to get through. I will get through this," she said.

   She hopes that in sharing her experience, she will help some other mother. "Four years ago I needed somebody to tell me that' I would live through it if my child was dead. I felt that if my son was not going to be here, I did not want to be here," she said. "Maybe I can help somebody else by being here to listen."

   As for giving of herself, she wishes she had learned earlier in life how fulfilling it can be. "I am getting so much more out of [volunteering] than I am giving," Shirley said.

   She also feels closer to her son through her work. "Anything I can do, I feel like my son would be proud of me. That's very important to me," she said.

   "I started this for my son, but now I'm doing it for me."