“Why Us?”
Once, the family of the Reverend Jimmy Allen was blessed with an unshakable faith in God. Then came AIDS, banishment, and death—and a need to ask the eternal question.
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Unlike Scott, whose anger was directed at God, the church, and the AIDS virus itself, Lydia’s anger was focused solely on the San Francisco blood bank for first giving her tainted blood and then failing to notify her for three years. Lydia kept notes and diaries, which her friends made available to me. Once she wrote down notes about how her life would have been different if she had known earlier. “I would have made sure that I did not become pregnant,” wrote Lydia. “I would have taken safe sex precautions with my husband. I would have trusted myself more and had a much better self image of myself as a mother. Now I know that I did a fantastic job of keeping this little boy [Matthew] alive and well in spite of the odds. At the time I could only berate myself for not being a better mother, and for not keeping my baby from being sick.”
If you want to know what living with AIDS is like, consider Lydia’s daily grind. Here are a few notes she scribbled on her calendar in 1985. July 1: “Bryan hospitalized…Diagnosed with congestive heart failure, liver and hypertension.” July 9: “Bryan diagnosed wit pulmonary bronchial dysplasia.” July 18: “Bryan’s heart monitor alarmed every 15 minutes.” July 26: “Matthew has horrible diarrhea.”
Nothing could cure her sons, and much of their treatment was painful. One day on the way to the hospital to get Matthew a gamma globulin IV treatment, Matthew turned to Lydia and said, “Mama, I wish I had a gun. Then I’d shoot my arms off so they couldn’t hurt me anymore. Why do you let them stick me?”
She had vowed not to use heroic measures to save Bryan, but in the end, she did everything possible to prolong every moment with him, including installing a central line for feeding. It was a decision she regretted, and later she advised other mothers in similar circumstances against it. “Be a mother first, not a medical caregiver,” she told them.
After Bryan died, Lydia searched for something she could pour her grief into, something constructive that would, as her mother told me, “leave some footprints behind.” Working with a psychologist in Dallas Lydia helped form a support group for HIV women. In 1987 she heard about three children whose mother had HIV and was too sick to care for them.
“Lydia could not bear to see those children homeless, so she took them in herself,” said Dr. Janet Squires, the head of the HIV clinic at Children’s medical Center, who cared for Bryan and now cares for Matthew. In June 1987, Lydia and Stefanie Held, who was then the director of pastoral services at Temple Emanu-El in Dallas, raised money to buy a two-story house in Oak Lawn to provide medical and social care for children with AIDS. Without Lydia’s knowledge, the board of directors decided to name the new facility Bryan’s House. To them, Bryan was anonymous. All they knew was that he was the first known baby in Dallas County to die of congenital AIDS. “Even people closest to the house never knew that Lydia was Bryan’s mother,” said Squires. “She didn’t want them to know.”
Today Bryan’s House provides three kinds of care for children and families who are affected by AIDS: A day care facility offers HIV-infected parents a place to drop off their children while they are at work, there are facilities for 24-hour care for children whose parents are temporarily hospitalized, and a few HIV children live at Bryan’s House because they no longer have a home. All of these services grew out of Lydia’s isolation. She knew what it was like to be ill and still have to care for sick children. Once Lydia wrote a poem titled “Who Will Sing My Song?” A year after her death, visitors to Bryan’s House can still hear Lydia’s poem on the playground in the chorus of thirty children at play.
At about the same time she was founding the house, Lydia also worked as a nurse for Dr. Squires at the hospital. Her primary responsibility was educating mothers once their children were diagnosed with AIDS, explaining how to hold on to their insurance, finding transportation for them to the doctor’s office, often referring them to Bryan’s house for baby-sitting and emergency financial help. “Almost no one here at the hospital knew that Lydia had AIDS,” said Squires, “but occasionally, when another mother would tell her that no one understood how she felt, Lydia would look them in the eye and say, ‘I do. I have AIDS myself, and I gave it to my sons.’”
AIDS became her lifework, but she did it in secret because she didn’t want Matthew to experience further rejection. She felt isolated even in happy times. Once she and her close friend Maria put together a program for a Presbyterian church in Dallas. Lydia read a ghost story she had written, “Harry’s haunted House,” and assigned children the parts of making different noises in the story, including doors knocking, clocks tick-tocking, shutters banging, and ghosts howling. “What if the parents knew about me?” Lydia asked Maria after the show. “There wouldn’t be any laughing then.”
At her father’s insistence, Lydia went to Mexico City for six weeks in 1988 to try experimental drugs that Luke had heard about through Baptist missionaries. These same missionaries brought drugs back to the United States for Matthew. Lydia didn’t fully expect the treatments to work, but she did them for her father.
In July 1991, at the age of 66, Luke Williams had a heart attack and died. As the family death toll mounted, with Lydia and Matthew living on borrowed time, Lydia’s mother, Joyce, stopped looking for meaning in the suffering. “Luke and Lydia were so close,” said Joyce. “He died with his heart broken, and I don’t ask why anymore. There simply aren’t any answers.”
At the time of Luke’s death, Lydia was told that she had little time left. Physically, she was increasingly weak and her vision was failing. Part of her psychic pain was dealing with the fact that she was a member of a deeply religious family, and at the end of her life, she couldn’t bring herself to talk about God. “She felt abandoned by God,” said Maria. “She just couldn’t reconcile the idea of an involved personal God with the reality of not being able to do anything to save her two babies.”
Her funeral provoked a religious crisis. Months before Lydia died, she and Scott had planned a non-Christian service to be held in a Unitarian church. However, near the end. Lydia changed her mind and told Maria that she wanted it held in a Baptist church as a comfort to her mother.
And so, on March 2, 1992, Lydia’s childhood self was resurrected for her funeral. The service was held at Shiloh Terrace Baptist Church, where Luke Williams had served as the music director when Lydia was a toddler. A huge crowd of mourners attended, as well as both the Allen and the Williams families. Hymns were sung. Prayers were offered. Maria delivered the eulogy, and Phil Strickland, Scott’s boss at the Christian Life Commission, struggled to keep his sermon as ecumenical as possible. At no time during the 45-minute ceremony did anyone mention AIDS. The church kept the secret well.
>On a comfortably hot day last September,
“Did you watch Brother Bob Tilton on TV last night, Skip?” asked Scott sarcastically. “Ohhh, yes, sirree,” replied Skip. “I sure did.”
“Did Brother Bob heal you of your homosexuality?” Scott asked. “Praise Jesus!” screeched Skip, milking his role. “I put my hand on the TV, and Brother Bob did in fact heal me of all my sins.” Scott exploded with histrionic laughter. “Hallelujah!” he wailed, in his best TV preacher whine. “Yet another miracle in these our troubled times.”
All the Allens are laughers. Listening to the extemporaneous comedy going on in the front seat, I found it impossible to believe that these two brothers, who now both live in Dallas and talk several times a day, were ever estranged. However, when Scott first found out his entire family had the HIV virus, part of his anger was directed at homosexuals, including his brother Skip. The two brothers didn’t speak until after Bryan died, when Scott realized that the enemy was a virus, not people.
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