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- August 03, 1987
- Vol. 28
- No. 5
Breaking America's Heart
Every Day Is a Challenge for People with AIDs and Those Who Love Them. What Follows Is the Story of AIDs Patient Ryan White
There are theologians who say that hell is cold—that ice, not fire, is the eternal torment. Ryan White has every reason to agree. A hemophiliac, he contracted AIDS from a transfusion about three years ago. You may have heard of him: His school kicked him out. Townspeople slashed the tires on the family car and pelted it with eggs; schoolmates taunted him; someone fired a bullet through the living-room window.
'What kind of people would subject a child to that?' his mother, Jeanne, asks as she hugs close her shivering child.
After a yearlong court battle Ryan's school let him back in, but last month the Whites moved away from Kokomo. 'I didn't want to die there,' Ryan says. 'I really didn't want to be buried there.' He's been to the cemetery here in Cicero and likes it better than Kokomo's anyway. 'It's quiet here,' he says. 'Peaceful.'
Now the disease is shutting down his body, system by system, raising colors on him in its advance like horrible campaign decorations—yellow when his liver falters, blue for his lungs. The worst of it, his mother says, is that he can never get warm anymore.... At the moment, Ryan is sitting on the couch watching TV. He's wearing a jacket, a sweater, his huge, furry "Bigfoot" slippers. A woolen blanket is draped over his shoulders for warmth, but it isn't enough. He shuffles into the kitchen again and turns the front burner of the electric stove to high.
"Only way I can keep my hands warm," he explains, holding his tiny blue fingers over the red-hot coil. "Sometimes I burn 'em," he adds, showing a nasty scar on one hand.
Ryan is tired all the time. He spends most of his days sleeping, reading comics or watching TV. Sometimes he plays with the Casio keyboard Elton John sent him. John has been a friend. He calls or writes about once a month. Last summer he flew the Whites—Ryan, his sister Andrea, 13, and Jeanne—to L.A. and took them to Disneyland. There Ryan got to meet Brooke Shields and Elizabeth Taylor. Ryan seldom gets out now because he throws up so often.
Despite the fact that AIDS is laying waste to Ryan's 60-lb. body, he has all the cravings of a normal teenager. His appetite, for example, is voracious, and tonight, when Jeanne suggests they have dinner out, he eagerly agrees. An hour later Jeanne, Andrea and Ryan, his heavy denim jacket buttoned to the neck, are walking into Grindstone Charley's, 10 minutes away. First, Ryan rushes to the bathroom to vomit. Then he spends 10 minutes warming his fingers under the hand dryer.
As he heads back to the table, he barely notices the stares. "I ignore everything," says Ryan. He learned that from his hometown and its grassroots hate campaign against him; on radio talk shows, he heard himself vilified as a "homo," a "queer" and a "faggot." Once he was readmitted to school in Kokomo, his classmates "backed away from me and called me names," he remembers. Compared to that, these stares in a restaurant are nothing.
Ryan orders some nachos, a steak and a salad. By the time the food arrives, he can't eat. Slumping, he seems swallowed up by the restaurant chair. "Mom, I'm sick," he whispers. Ryan's head slumps forward. The fork slips from his hand. "I'm too tired to eat," he says miserably. Back home, he goes directly to his bedroom. Jeanne collapses on the couch. Neither she nor her son complain about the hand life has dealt them. First hemophilia, then AIDS. "We don't dwell on things," she says. "If we did we'd go crazy."
In a while Jeanne goes off to the bedroom. It's time for prayers. She tucks her child into bed and kneels beside him. She holds his hands in hers as they bow their heads together and pray in unison: "Thank you, dear Lord, for another day."
Soon Ryan's eyes begin to close. "I love you, Mommy," he murmurs.
Jeanne White gets up, turns the lights off and closes the door. Then, in the hallway, her strength seems to leave her in a rush. She sags against the wall. "I'm okay," she says through her tears. "I'm okay," she says, as if trying to make herself believe it.
Dawn. New Orleans
The lights are still shining on Bourbon Street. A man and woman waver out onto the sidewalk from Cafe Lafitte in Exile, and swirling around them come gusts of cool bar air and hot singing: Won't You Take Me to Funky Town. A street sweeper cruises along, trying to scoop up the thousands of discarded "go cups," tall plastic containers provided by the local bars so that customers can take their bourbon or beer out to the sidewalk if they want to.
At the corner of Bourbon and St. Ann streets, a row of waist-high yellow traffic markers define a pedestrian zone in New Orleans' centuries-old pleasure district, but they do more than that. They mark the precise spot, which everybody calls the "Lavender Line," where the jazz joints and strip houses give way and the gay bars begin. The gay bars, many open 24 hours, are famous in New Orleans: the Great American Refuge, the Mississippi River Bottom, the Rawhide Mining Co. and the Bourbon Pub, flying the flags of the U.S., the Confederacy, France and the State of Louisiana in chauvinistic celebration of a love that, here at least, dares to unfurl its name.
But things have changed on Bourbon Street. Ten years ago there would have been a dawn river of cavorting couples, a cascade of men singing, yelling, flirting, buying, selling, flowing on from bar to bar. Even five years ago there would have been hundreds of them. Now a few faded looking hustlers lean on the brightly colored stoops, looking without much luck for lonely strays. A shirtless man driving a sleek white car cruises up and down, up and down; but he finds no takers.
If you want to know why, wait outside Cafe Lafitte. Wait for Dusty and Eric to waltz up. They have been dancing down Bourbon Street together: Dusty is 22 and just out of the closet, Eric is 29. They stop here on Bourbon Street, a little out of breath, and stand beneath a balcony that girds Cafe Lafitte. But they are looking across the street at an office front that seems out of place here: a plain white stucco facade amid the jumble of neon and porch lights, hanging flowerpots and faux-French ironwork. The shinglelike sign on its plain wooden door says a great deal more about the future of this street and these people than all the legendary gaudiness on the strip. It reads: AIDS INFORMATION CENTER.
It stands for death, 21,915 deaths in the last six years, God knows how many more to come. It has stopped Dusty and Eric's dancing. And every once in a while, another reveler, stumbling out of some bar, will find himself standing in front of it, staring at it, numbed by fear and grief, staring for a long, long time.
All along Bourbon Street now, the porch lights on the yellow, blue, purple, pink and green houses are being turned off, to greet the new day.
8:40 a.m. On Rounds with Dr. Michael Gottlieb, Santa Monica, Calif.
Dr. Michael Gottlieb is credited with recognizing AIDS as a new disease in 1981, and his first patient today, a 41-year-old oral surgeon from New York whom we shall call Mickey, is dying of it. The scene appears grim—he lies in a room with all the curtains drawn and the lights off—but despite the catheter that has been driven above his heart to assure a direct line for his drugs, despite the pneumocystis that is trying to kill him and the seborrhea and ringworm that merely make his life miserable, Mickey banters with everybody as best he can. He makes fun of the nurses, himself, even his AIDS.
"Rock Hudson was that way," says Gottlieb, 39. "He always had a cheerful word for me."
Gottlieb first glimpsed the death's head that is AIDS behind five cases of pneumocystis, an unusual form of pneumonia, in previously healthy gay men. He was the first to study the drug AZT, now being widely tested as a way to retard the disease's progress. He was a co-founder, with Elizabeth Taylor and Dr. Mathilde Krim, of the American Foundation for AIDS Research. He is a celebrity of sorts now. He drives a jag and dresses like a professor. But he is still at the front, still researching, still making his rounds at Santa Monica Hospital.
His second patient this morning is Andy, a hairstylist from Los Angeles. In his room two huge metal bins stand against a wall: One is for infectious linens, the other for infectious wastes. AIDS can take three forms: a blood status of HIV-positive, which means a person has been infected with the AIDS virus antibody, has at least a 30 percent chance of developing the disease and probably can infect others; ARC, or AIDS-Related Complex, whose symptoms include weight loss, swollen lymph glands, chronic diarrhea and night sweats, and an estimated 5 percent of whose victims each year develop AIDS; and the full-blown AIDS syndrome, with its ghoulish, opportunistic diseases and 100 percent fatality rate. Andy has the last; he weighs 104 lbs.; his eyes are glazed. A hole has been cut in his throat so he can breathe, and he can hardly whisper to Gottlieb that he thinks the tubing on his IV is kinked. Then he reaches for a Kleenex, and the effort is too great. He doubles over and emits a deep gurgling noise as mucous wells from his tracheotomy. Minutes later, when Gottlieb, leaving, tells him, "Hang in there, you're doing better," Andy shakes his right foot wildly, as if to say, "I am not. I'm dying."
There will be 17 more patients in the course of this Friday: At 9:12 a well-known fashion illustrator, who says he's feeling strong enough to go to Paris for a photo shoot; at 10:13 a nephew of Lyndon Johnson's, whose right hand is useless and black from his treatment but whose sickness caused a reunion with his famous family; at 11:32 a young mother whose husband is bisexual—she is in for tests; at 11:41 an HIV-positive tennis jock who swears, "If I am going to drop dead, I'm going to drop dead healthy." Of his time with these patients Gottlieb says, "I continue to marvel at the sturdiness of the human spirit."
Gottlieb thinks his greatest contribution may not be made here, at bedside, however, but in his lab. At the moment he is especially optimistic for his work with DDC, an AZT relative he hopes will be available for testing in two months. In the long run, he is sure AIDS will be conquered. "If we can put a man on the moon," he says, "we can outfox this virus." In the short run...how many of his former patients are now dead?
"I've lost count," he says.
9:30 a.m. The Calico Club, Battle Mountain, Nev.
Brigitte, in her transparent teddy, sits at the bar with two truckers. Jeri, in a nightie, is working the CB in a sultry voice, promising free coffee and showers at "Nevada's friendliest legal brothel." "That's all the state allows us to say over the airwaves," Jeri says, between announcements. "So I make it as inviting as possible." They all are discussing the monthly Nevada inspections, compulsory for the past 14 months, which the girls call "doctor day."
"If a girl tests positive for AIDS antibodies, she loses her license," says Penny, the manager.
"A positive result means she wasn't using condoms," says Madam Ginger.
"For a while business slowed down because the guys were afraid," Penny says. "Now word is getting around about how safe the brothel workers are and business is picking up again."
"I'm just not using lot lizards anymore," one trucker from Arizona says. He means the prostitutes who work the truck stops.
"If there's any question at all about a customer, I've instructed the girls to refuse to continue the party," Madam Ginger says firmly.
"It's not worth it," Brigitte, in the teddy, agrees. "Just like it's not worth extra money not to use a condom. Get infected and you're out of work for days, weeks—maybe forever. Anyone that stupid shouldn't be in this industry. It gives us all a bad name."
"That's why I come here," the other trucker says. "I don't want to bring anything home to my wife."
"Most of our men are married," explains Madam Ginger.
The Morning Paper, Spokane
Today's edition of the Spoksman-Review includes an endorsement of several recommendations by a year-old citizens task force. The group hopes to rid the streets of prostitutes in ways that are "fair, humane and realistic," and one of its proposals is to put up billboards in the parts of town that prostitutes especially favor. The billboards would read: DO YOU KNOW IF THAT WOMAN YOU JUST PICKED UP HAS AIDS OR IS AN AIDS CARRIER?
9:45 a.m. A Hotline in Detroit
Scott Walton, 33, is staring at an empty chair in the offices of Wellness Networks, which has an AIDS hot line. "He died in the spring," Walton, the executive director, is saying. "I sang at his memorial service."
The phones are ringing and lights are blinking on buttons. Volunteers jab the buttons and listen to voices:
A woman is crying. She was in a department store dressing room and noticed a spot of blood on a chair. She isn't sure she touched the blood but she is terrified she will gets AIDS. A volunteer tells her, over and over, that that is virtually impossible. Finally the woman seems persuaded, somewhat.
"No, mosquitoes do not transmit AIDS," another volunteer says.
A man has shown positive on the HIV-antibody test. He wants to know whether he will get AIDS; he may. He wants to know whether he can have sex without communicating the virus; there will always be risk. The volunteer, sneaker-clad feet crossed on his desk, gently recommends a support group.
A woman's husband has forbidden the family to use the public swimming pool because of AIDS. The pool is safe, she is told.
A woman is worried because she washes out communion chalices at her church. That is safe, she is told.
A regular: He has been in a peep show booth that was unclean and is scared. Last week he had been to a topless bar, touched a dancing woman and was scared. A volunteer, familiar with the voice, tells him to go see his therapist.
Scott Walton, elegant in gray suit and shiny black cowboy boots, hits another button and asks a caller how he's feeling today.
Walton's face becomes anguished.
He names a doctor. "Call us back if you have any problems," he says.
And the phones keep ringing.
10:15 a.m. A Kitchen Lab, Tulsa
An angry young man, looking like a leftover '60s hippie in ponytail, T-shirt and jeans, works at a wooden picnic table in the kitchen of his small, cramped apartment. He wishes to be known only as Dave, since what he is doing is extralegal. On a gauze strip stretched between two bricks, he lines up a dozen capsules of Imuthiol, a compound used to treat metal poisoning. In a shot glass atop a digital scale, he carefully mixes nine grams of acetone, a prime ingredient of nail polish remover, and a gram of white powder called CAP, for cellulose acetate hydrogen phalate. He stirs with a swizzle stick, then, using tweezers, dips in the capsules, coating them, he believes, against stomach acids which would make them inactive and toxic. "We've had to become our own physicians," he says bitterly, "because the medical establishment is letting us die."
Dave's kitchen is one of 65 guerrilla labs that have sprung up across the country since the fall of 1985, all desperately turning out "work-alike" versions of remedies that may or may not be effective in retarding the progress of AIDS and that lack the approval of the Food and Drug Administration. Dave, 31, is a former commercial artist, and he got into this field in April 1986, when his lover, Jay, developed AIDS and was told he had only two months to live. Dave refused to accept the prognosis. "The doctors gave up on him," he says. "In fact, they probably made his condition worse by bombarding him with last-resort drugs as if he were Hiroshima." He put Jay on nutritional supplements and a high-carbohydrate diet. He went to Mexico to procure ribavirin and isoprinosine, neither approved for AIDS treatment by the FDA. He haunted medical libraries and steeped himself in scientific journals to the point where government researchers would chat on the phone with him about unreleased drugs, never guessing he was not one of their own. He set up a nationwide PWA (People With AIDS) co-op to get discounts on nutritional supplies and offers printed handouts with the latest "recipes." "I can't recommend anything," he says, "but I can tell people what's out there based on the scientific data and my own experiences."
The phone rings. A man is calling from New York about ribavirin; then a researcher in Texas who wants Dave's view on a substance made from aloe vera. "Drugs are sitting out there that could save our lives," Dave says. "It's genocide. I kept Jay alive a year longer than the doctors expected."
He dips the Imuthiol capsules as he talks. Precisely. Bitterly. Jay died three weeks ago.
10:20 a.m. Providence House, Long Beach, Calif.—Part 1
"Jim!" comes a cry from the porch of the big, weathered post-Victorian house. "It's the hospital. Frank's taken a turn!"
Jim Johnson bounds up the steps from the sidewalk. Johnson, who looks a bit like Tom Selleck—big, fit, muscular, mustachioed—is the head of an interdenominational AIDS support group called Beyond Rejection, and he runs Providence House, Lily House and the San Juan Hotel, three boarding facilities for PWAs. By local ordinance, the houses can hold only six patients each, the hotel 20. In their 11 months the three shelters have handled 43 PWAs. Six of them got well enough to leave; six are now hospitalized; 15 are now residents; 16 have died.
Frank. A week ago Frank seemed almost healthy. He had gone out to dinner and a movie with his family, in a limo, had laughed and enjoyed himself. Several days later Pneumocystis hit and he was rushed to the hospital. Johnson races to go see him.
He gets to the hospital in less than 10 minutes. "Frank was my pet," he says in the elevator. "I try not to single anyone out, to treat everyone equally, but..."
At the second-floor ICU, Frank's family and friends are huddled in the waiting room, somber. A young man is slumped in a plastic chair. "It's so unfair," he says.
Johnson is too late. He leans weakly against a mustard-colored wall. "This is a hard one," he says.
The Morning Paper, New York City
Legal cases focusing on people accused of knowingly exposing others to the AIDS virus are cropping up around the country, raising troubling issues for the courts, public health officials and the law-enforcement authorities....
"We've got a classic case of hard cases making bad law," said Lawrence O. Gostin, executive director of the Boston-based American Society of Law and Medicine. "It's totally a symptom of the hysteria surrounding AIDS."
—The New York Times
11:45 a.m. The Louisiana House of Representatives, Baton Rouge
The honorable members of Louisiana's lower chamber are engaging in catcalls and also dogcalls, meowing and barking to greet a bill on pet-food taxes. This may be a form of release; on Wednesday, by a margin of 62-27, the representatives passed a bill permitting the arrest and quarantine of any person with AIDS.
Alphonse Jackson Jr., a 59-year-old who came up through the civil rights movement, was the quarantine bill's sponsor, and right now he has more to worry about than pet food. The Louisiana ACLU has already denounced the bill, the Governor is talking veto, and gay people on the street fear concentration camps. Jackson is worried. "This measure isn't intended to round up AIDS patients," he protests, putting a starched white handkerchief in his breast pocket. "We don't round up people with tuberculosis, but we have a law to deal with them if they endanger public health. What if someone broke into this chamber and started kissing and sticking people, infecting others simply to take their lives?"
There seems to be some miscommunication here. "We don't need this bill to deal with AIDS," says Louise McFarland, the epidemiological section chief of the State Health Department. "We need it for tuberculosis patients, who can spread their disease without actual physical contact." Health Department and ACLU lawyers are already working together on amendments to soften the bill.
Jackson sighs. He is tired. He admits the bill as written could be abused. "Suppose we did get a tyrannical health inspector who did want to round up these patients?" he worries. "I would rather take the quarantine section out than encroach on anyone's civil liberties." On the other hand, "This disease is a modern-day plague," Representative Jackson says. "It could immobilize this country." And, "AIDS is behaviorally driven and we have to have mechanisms to control it, if necessary."
The pet-food bill is defeated. The AIDS bill will be withdrawn next week.
Noon. A Fireman, Finksburg, Md.
This was supposed to be Gary Brewer's first full day back at the firehouse. Instead, he is sitting on the deck of his blue ranch house, his wife having gone to her job as a legal secretary, watching their son, Eric, 17, mow the lawn. Eighteen days ago, Brewer and a medic responded to a call about a pregnant woman who had been shot in the abdomen by an arrow meant for somebody else in a quarrel. She was bleeding profusely and the men stanched the flow as best they could. When it was over, Brewer's arms and hands were covered with her blood. The woman and her baby died anyway. She was later found to have tested positive for the AIDS virus.
Normally easygoing, Brewer started yelling at his wife, washed his hands compulsively all day long, couldn't sleep. His first AIDS test was negative but two more tests remain, in September and December. He is on sick leave, seeing a psychologist, and angry because he feels the department has been nonsupportive. Yesterday he reported back to the department's doctor, who could certify him for duty, but they agreed he wasn't ready yet. So today Brewer, 40 years old and a 17-year veteran, sits on the deck. In two days he will start a week's vacation in Daytona Beach, Fla., with his family. "I'm just going to lie on the beach," he says firmly. "I want to put this behind me."
But he can't. He thinks about quitting the department. It's the nonsupport, the risk of more calls that might endanger everything, the strain. "I'm in limbo," Gary Brewer says, and looks out at Eric, mowing the grass.
12:30 p.m. A Woman in a Certain Town, Northern California
It was six years ago, Ann thinks, that she contracted the AIDS virus from a bisexual lover, but almost nobody in town knows that she has it. She's almost certainly the only such person there, and revealing that wouldn't do her any good. By the time she learned she had the virus, she'd had four kids. Now the two youngest test positive for exposure to AIDS. Although she and her husband of five years started to practice safe sex, they sometimes slip up. "He thinks I'm silly for insisting on condoms," she says. "He doesn't feel he will catch it at all."
That's how Ann, 32, got pregnant again last January.
She cried for a couple of days after that because the doctors told her there was a 60 to 75 percent chance this child would get AIDS too. They offered to do an abortion for free. Ann was ready. "But then I looked at my other children playing around my feet. I just couldn't do it. I love my kids." Then there was her husband, the one who doesn't think condoms are important. "He's really an optimist," she says. "He's convinced this child has a really good chance. I don't know if he's superpositive or just in a state of denial." As she dishes out franks and beans for lunch, Ann shares that incorrigibly sunny view. "I consider myself perfectly healthy," she says. "Maybe I was just exposed a teeny, tiny bit to AIDS. I mean just enough to give my body some resistance."
So how does she justify bringing a baby into the world knowing the odds are high that its life will be short and full of pain? "I would rather see a child be loved for two years than be on earth for 50 years without love and affection," she says. Even if the child suffers? "I would hate to see it happen," says Ann.
1 p.m. David Chickadel's Day, Philadelphia—Part 1
The picture in the silver and brass frame on the dresser of David Chickadel's apartment was taken in the summer of '83, and it shows two handsome young men: David and his lover of seven years, Thomas. They are vacationing on Fire Island, N.Y., and smiling. That was just before David was diagnosed as having AIDS in the fall; Thomas received the same diagnosis in October '85. He died in January, and David, 34, is fighting for his life. In the picture, he weighed 210. Now he's 120 and looks gaunt, ascetic, like an Indian holy man.
The phone rings and David picks it up. No one there. He's used to that by now. "Two friends came right out and told me they didn't want to have any direct contact with me because I'm sick," he explains. "But they'd call to make sure I was still alive."
He shrugs, having a lot to do today, starting with a doctor's appointment. He locks the front door, begins to walk the five blocks. Then halfway to the hospital he can't remember if he locked the front door or not. Memory lapses are common in PWAs. "My, we're looking a little petite today," the doctor at the Graduate Hospital tells him. David laughs. "You're not doing so bad," says the doctor, after reviewing his tests, "but I want you to gain some weight." David vows he will. The doctor asks how his support group is working. "I'm not going anymore," David says. "There's just too much talk about death and dying. It's ridiculous. You've got to put some humor in it."
On the way home David stops at the pharmacy and buys $954 worth of medicines. They will last him about 24 days.
When he gets back to his one-bedroom, top-floor apartment, beautifully decorated in soft blue and rose, David is met by his "buddy" Anne Greenberg, a volunteer. Two years ago Anne, 44, survived a bout with lung cancer and decided to help those people "who are not getting any support." She cooks for David, she cleans for him, but mostly she serves as a friend, one of his best friends now.
"How are you doing?" Anne asks cheerily.
"I don't know," David says. "This past day I've been bursting into tears for no reason...no reason at all."
She puts an arm around his shoulder.
1:10 p.m. Providence House, Long Beach—Part 2
Jim Johnson gets back from the hospital and finds one of his residents, James, sitting on the porch next door at Lily House, changing the batteries in his beat box. James is 46, and music goes wherever he goes. "How's Frank?" he asks.
"We just lost Frank," Johnson says. "He's with the Lord."
Surprise, frustration, resignation wash across James's face. Blindly, he pushes a pack of Marlboros toward Johnson. The two smoke in silence, heads bowed. Before, James was a cook in the merchant marine; bedridden in January, he has revived enough to take up the culinary duties for the house.
"Frank was my roommate when he first came in here," James says. "I liked him."
Johnson pats him on the knee. "Get your music going," he says. As he crosses the yard toward Providence House, Luther Vandross' voice wafts through the warm California air: Give Me a Reason.
Five minutes later Officer John Griffith pulls up in his official white car with the city seal on the sides. The neighbors have called again, this time to complain that there are more than the allowed six people per house in the complex, so Code Enforcement Officer Griffith has come to investigate. After Johnson demonstrates that the charge is wrong, he and Griffith discuss the importance of death with dignity. "Ten out of 16 died here at home," says Johnson.
He pauses, then corrects himself: "Out of 17."
"Don't try setting people up in the garages," Griffith advises in a friendly way as he leaves. "People would call in on that, you can count on it."
2 p.m. Fred, a PWA, Philadelphia
I'm not an IV drug user and I'm not homosexual or bisexual, so after the first two tests I didn't believe it. But if enough people tell you you look like a horse, you'd better start buying hay. Finally I went into an AIDS shelter. There were 13 of us thereat the start and to my knowledge, I'm it-the only survivor. But depression will kill you faster than anything. I went through my suicide period like everyone else, but then it occurred to me that the way my luck had been running, I'd probably jump out of a window, land on some cop and have to serve time. I don't think those kind of thoughts anymore.
3:35 p.m. Providence House, Long Beach—Part 3
Jim Johnson, on the phone, accepts a new resident. His name is Tim, he is 31, and he's been living in Hollywood with his friend Larry. He is about to become homeless. Larry's landlady said Tim can no longer sleep on his couch.
3:45 p.m. Ralph, a PWA, Atlanta
I found out I had AIDS in October 1985. My parents had shunned me since 1983, when I told them I was gay. But deep down I thought it would make a difference if they knew I was terminally ill. I thought they'd get over the gay issue and come around. The doctor kept pressuring me to tell someone. I finally called them. It didn't make them change at all. My mother said, 'Oh, my God, we can't handle the other thing, how can we handle this?' They let me know they thought I had shoved this gay thing down their throats. If I die, they will not be at the funeral.
My grandmother and I have always been unusually close. When I told her I was gay, she said, 'I'd love you if you had carrots growing out of your ears.' She went to the family. She said, 'He's sick, you've got to help him.' They ran her out of the house.
Ralph's Grandmother, in a Small Southern Town
Ralph's a fine young man. You're not supposed to have special grandchildren. I've tried not to, but Ralph is special. I did not know about AIDS. I did not realize it is so serious, and spreading so. I worry. I don't know if he's getting all the rest and the good food he needs. I've got this big ole house. I'd like for him to come here and let me take care of him. But my children won't let me. I grieve since all this started. I want to help Ralph, but I can't risk losing my daughter. I may need her help some day. I think about him all the time. I look down the road and wonder what will be and how it will be. I wish there were something I could do about it. I pray about this, I sure do.
4 p.m. A Meeting of Mothers of PWAs, Los Angeles
Greg was a well-known theatrical lighting director in New York, and he really couldn't face the fact that he was dying of AIDS until maybe a month or so before he died. He was always so bright and alert and affectionate. He always loved cats, and as he was dying, a yellow cat walked in the door and lay down on his bed. The day Greg died, the cat left. I don't know ivhat it means, but it stays with me. Many of the mothers report certain spiritual developments or strange things at such times.
—Mary Jane Edwards
I'm just not the same person I was before my son died. In his dying, he taught me living, though he could never speak freely about his feelings to us. There was a dove that kept flying to his windoiv as he was dying. We have never had a dove come to our house before or since.
4 p.m. A Dumpster, Indianapolis
Two 11-year-old boys, just wandering around, find a baby bird in some bushes behind the MetroHealth clinic on the west side of town. Looking for a box to put it in, they spot a banged-up Dumpster containing a cardboard box. They take out its contents—20 vials of blood and 125 syringes—put the bird in the box and hide the vials and syringes in the bushes. At least one of the vials is contaminated with AIDS.
The next day the boys will come back here with 10 or so pals. They will mess around with their find, heaving vials at a brick wall, getting blood all over themselves. If any of the kids has an open wound, as boys do, and the AIDS blood gets on it, he will be in danger of infection. Of course, the kids don't know any of that yet. Neither do their parents. They will all find out Sunday.
Several days later the kids will be tested for AIDS. All will be found safe, for now. There will have to be more tests over the next few weeks and probably more after that. The incubation period for AIDS may be five years or more.
4 p.m. A Woman in Kansas City
"I'm not thin," says Marie, a 34-year-old office worker. "I'm not pale. I'm middle class. I'm heterosexual. I live in Kansas City. And I have AIDS."
She is sitting in the living room of her comfortable suburban-housing complex with another woman, an AIDS counselor. "You're not supposed to have AIDS in Kansas City," agrees the other woman.
Marie's got two teenage kids, and she's been divorced for 15 years. During that time she's had just four sexual encounters. "I have not been a loose woman," Marie says, blushing. "I'm not a bar person and I haven't done drugs. I'm somebody's mother. Somebody's sister. Somebody's daughter. They say I'm in a low-risk group, so if I can get AIDS, anyone can."
4:15 p.m. David Chickadel's Day, Philadelphia—Part 2
David and his buddy, Anne, are making dinner plans. She is suggesting Fratelli's, a good, trendy Italian restaurant downtown. David seems oddly reluctant, but finally he makes the reservation. "Be absolutely sure you seat us on the first floor, not the second," he tells the maître d'. "The first, please be sure of that." He is adamant.
Then it's 4:20, time for another trip to another doctor. A pathologist, this time. David has found a spot on his wrist, and he's terrified it might be Kaposi's sarcoma, a cancer which has stricken 40 percent of all PWAs.
Walking to the pathologist, he again tells Anne, "It's strange, the past day I've been bursting into tears for no reason." Then he adds, "Maybe it's the roses."
The day before, a friend in San Francisco had sent David a dozen yellow roses. He put them in a vase on his dresser, near the picture of him and Thomas.
"Were yellow roses important to you and Thomas?" Anne asks quietly. David just nods slowly.
At the pathologist's, David's jaw is clenched with dread, but the spot on his wrist turns out to be nothing more serious than a mole he'd never noticed before. They head for Fratelli's and as they get near, David begins to get excited. "Everything's good there," he says. "But the seafood pescatore, well, it's just fabulous." As he insisted, they are seated on the ground floor. But when it comes time to order, David's eyes grow sad.
"The pescatore may be fabulous," he says, "but I'll have the lasagna. It's more fattening."
4:58 p.m. Providence House, Long Beach—Part 4
Tim, the newest resident, is driven up to Providence House by his friend, Larry. He is given a room, on the ground floor. Larry carries him in and puts him straight to bed. Tim is too weak to walk, talk or eat.
5 p.m. A Wake Near Chicago
Julio was "macho," says his brother. "He liked to work and watch sports," says his mother, who is crying. "He rode a motorcycle. He traveled." The brother remembers he was a pretty good pickup outfielder, liked to party, had his share of girlfriends. At the moment, only his relatives from Cleveland are here at his wake in Aurora's Healy chapel, which is small and discreet; his aunts and cousins from Puerto Rico will be arriving soon.
Julio was 40. Last year he started to lose weight and got stomach cramps, but a series of neighborhood doctors told him he had a virus, forget about it. In May, worse, Julio went to the hospital and tested positive for AIDS. He broke it to his family over Memorial Day weekend. Then he went back to the hospital for good.
In his last month Julio, a Catholic-turned-Pentecostal-turned-agnostic, started looking for the Lord again. He asked his family to read from the Bible, especially Psalms 88 and 52:
Yo soy afligido y menesteroso...
Has alejado de mi el amigo y el
Y mis conocidos se esconden en la
Mas yo estoy como oliva verde en la
casa de Dios.
En la misericordia de Dios confio per-
petua y eternamente.*
5:30 p.m. The Hemlock Society, Chicago
Michael is sitting in the small apartment, full of literature and mismatched furniture, of the director of the local chapter of the Hemlock Society, which helps people learn how to commit suicide. This time Michael is getting material for a friend. He already knows how he is going to kill himself.
Michael, a 49-year-old theatrical designer, is urbane. Sophisticated. He has an eye for what is beautiful and what is not. A few years back he watched his mother die after an eight-year struggle with muscular dystrophy. At the end, she was a vegetable. So when his AIDS was diagnosed in June 1986, he immediately contacted the Hemlock Society and worked up a blueprint for himself.
"I will wake up that morning," says Michael, "and I will tell my lover of 26 years to stay away from home for at least 24 hours. I don't want him legally implicated in my death. Then, at 10:30 a.m. I will take 30 mgs. of Compazine, a stomach muscle relaxant that keeps you from vomiting. I will eat some toast or crackers, drink some vodka with apple juice and then I will take 600 mgs. of Seconal. I plan on sitting in my favorite Miës van der Rohe chair and reading until I fall asleep. In 15 minutes, I will doze off." His tombstone is already picked out, the funeral arrangements all made.
"Don't you see?" Michael says. "I want to die as well as I've lived."
6:15 p.m. Providence House, Long Beach—Part 5
Jim Johnson is changing Buddy, all 85 lbs. of him. Buddy is a 41-year-old in the final stages, near comatose and incontinent. Afterward, worn out, the house director joins Ken, 36, who has been taking AZT for two weeks and feels better already. "I can't wait to see my blood tests next week," Ken says hopefully. "I'm convinced they'll show improvement." Then, cautiously: "But maybe it's psychosomatic."
Ken asks how Frank is doing.
"Frank didn't make it," says Johnson.
Ken grimaces, and his grimace looks odd. He wears glasses but can't afford to replace a missing left lens. "It happened so fast," he whispers. "It's really not fair. That's so hard to handle, to see your friends go, one after the other. I'm going to lock myself in my room and not make any more friends."
Then he looks up at Johnson, smiles weakly and says, "That's the wrong attitude, isn't it?"
6:45 p.m. A Single Woman, New York City
Sarah, a 25-year-old buyer for a gourmet food store, wriggles into a black '50s-style one-piece bathing suit. At her feet, on the floor, are two mattresses swathed in beige sheets. She pulls on a short black skirt, then slips into a green vintage man's jacket. She's on her way to a party and she'd love to meet "someone special." In fact, she's prepared for that eventuality. "I'd been telling all my gay male friends to be careful," she says. "Then suddenly I realized—the same applies to me. I was devastated." Too embarrassed to buy condoms herself, she had a gay friend lay in a supply. "In college you met someone at a party, you went home with him," she says wistfully. "Not anymore." Condom etiquette, however, is a real problem. "There's no good time to bring it up," she says. "It's a weird thing. Uncomfortable." She finishes her makeup. "I know myself," she says. "Stuff happens, and I'm not that strict with myself. I'm easily tempted. I know I'm not going to stop having sex till they find a cure for AIDS. I'm just trying to be realistic."
Sarah checks her purse. Lipstick, blush, mascara, condoms are in place. She will use them all.
7:05 p.m. A Transmission From the Associated Press, Washington, D.C.
Three American condom manufacturers have issued recalls of several lots of their contraceptive, antidisease rubber products because they failed leak tests, the Food and Drug Administration announced Friday....
Bill Grigg, an FDA spokesman, said about 100,000 condoms are involved in the domestic recall and that most of them have been recovered in transit or at distributors before they reached the public.
7:15 p.m. Mark, Joe and Christine, Cape Cod
Mark is waiting. Time, he knows, is short. Whenever a car door slams outside, he looks up hoping to see Joe, his lover of three years, come through the breezeway. "Where are they?" Mark wonders aloud. Earlier, Joe and his sister Christine, who's visiting from Houston, went to the hospital, and the waiting is making Mark edgy. He starts to set the dinner table. "I want to be with Joey when he dies," he says. "Nobody should have to die alone. I'd rather grow old with him. But...."
Finally, in come Christine and Joe. Both men light up when they see each other. "They offered me morphine for pain," says Joe, who walks gingerly, in obvious pain. "I said, 'Not yet.' " Nodding, Mark goes off to the kitchen to prepare the pasta.
"He's so good to me," Joe says when he is gone. "I wish I could be braver. I give in to my feelings too much. But Mark never gets depressed. Sometimes I feel guilty."
Christine interrupts sternly. "You're too hard on yourself, Joey."
Well, he wanted to do great things with his life. He wanted to complete his doctoral dissertation. And now he won't. "I probably won't be here by the fall," says Joe. "But in a way I'm dying happy. I've got Mark. I've got my family. I just don't have much time to enjoy it all."
Mark calls them in to dinner at 7:45. On the table is a spray of red and white carnations. Mark has prepared pasta primavera, one of Joe's favorites. But Joe can barely eat. From time to time Mark pats his arm. Afterward, on the way to the den, he supports Joe with an arm around his shoulders. "Want anything else, hon?" he asks. "Ice cream?"
Christine volunteers for the dishes. Although she's supposed to go back to Houston in three days, she's not sure she will. "I feel so awful, so helpless," she says. "Joe was always my guiding light. He was the one I turned to for advice when I was getting married. We'd always go for long walks and talk and talk.
"I don't want him to die," she adds suddenly, with vehemence. "I know it's selfish, but I don't want that void in my life." Christine's voice quivers, which is bad: Joe hates when his sister cries, always has. It makes him cry too. "It's easier knowing Mark is here," says Christine when she gets control of herself. "I think God sent Mark to Joe."
In the den Joe is slumped on the couch, his dog's head on his lap, Mark next to him, waiting for the fall.
11 p.m. to 1 a.m. Joplin, Mo.
If you're looking for excitement, it looks like you've come to the wrong place, podner. The sidewalks here were rolled up hours ago. You can't get much more Bible Belt than Joplin: It has 113 churches.
But wait. A pickup truck takes a left on Main. It pulls into a parking lot behind a brick building. Out steps a lithe young man wearing a cowboy hat, muscle shirt and skintight jeans. Welcome to the parking lot that serves C.G.'s Lounge and Billy Jack's—among the biggest, best bars in Joplin, and both catering to local gays. The scene is Fellini-esque. A motorcycle with a white, five-foot teddy bear in the passenger seat circles the lot where 100 or so people—cowboys, preppies, rockers—laugh, drink and dance. Inside C.G.'s, a guy in a golf shirt takes a sip of his bourbon. "In this town we're not gay," he says. "We're queers. But as long as we pretend we're straight, they leave us alone." At a table, a bronzed, whippet-thin cowpoke signals for another tequila sunrise. "AIDS don't much touch us here," he says. "One guy had it, but he got it after messing around in California. Hell, he didn't get it herein Joplin."
Next door at Billy Jack's, Tom drains the last of his beer. He's about to check out the parking-lot action. "It isn't that we don't care here," he says. "It's more like we don't know. AIDS is like being gay in Joplin. It ain't exactly real." Yet.
2 a.m. David Chickadel's Day—Part 3
David Chickadel is staring at the silver-and brass-framed picture on the dresser.
"It's so hard to lose someone you love," he says. "On New Year's Eve, we went to Fratelli's and had pescatore, our favorite. Thomas was pretty sick by then, but we were happy. Six days later, he was dead."
David shakes his head slowly. He looks exhausted. "It's been a long day," he says. "And, you know, lately I just burst into tears for no reason. Did I tell you that? Maybe it's the yellow roses."
3 a.m. King's County Hospital, N.Y.C.
A baby has just been born who is at risk for AIDS, the last of eight such babies born at King's County tonight. In a little while this infant, like the other seven, will test free of AIDS—the first of many tests.
5 a.m. Providence House—Part 6
Jim Johnson is asleep. Like David Chickadel's, his day had been long. At 9:10 p.m., as he was settling down for a quiet evening, Buddy came near to death. He was pale, coughing hard and moaning when Johnson rushed out the door with him in his arms at 9:18. By 9:22 Johnson was carrying Buddy into the hospital. Buddy's blood pressure was perilously low, but he was placed on an IV and stabilized. Shortly after midnight, Johnson returned to his own lodging, a room next to the Providence House chapel. In the chapel, a small mahogany-colored box holds the ashes of a resident who died a week before Frank. When he finds time, Johnson knows he must scatter the ashes at sea as the dead man's family requested.
Now, not quite five hours later, Jim Johnson awakens from a restless sleep. He is surprised to find that he is crying.
Dawn, Saturday. New Orleans
In the backyard of Lazarus House, about seven miles from Bourbon Street, the first birds of day have begun to stir. It is still dark, and inside the house, a church-sponsored residence for PW As, all is silent except for the low murmur of a television set on the second floor. In front of the set, on a couch, lies a tall, bearded young man, staring listlessly at the screen or exchanging a few labored words with his mother, who sits on another sofa a few feet away. He asks her something; she quickly brings him a glass of liquid with a straw in it. She lifts his head; he drinks.
The sun rises quickly in New Orleans, skimming over the swamps and lowlands that surround the city, brushing the low, shotgun houses and pastel-painted Creole cottages. It bathes the trees, whose branches reach almost to Lazarus' second floor. It streams through the wide window and paints bright streaks through the room with the television set...
...where, only a few seconds after swallowing, the young man has gagged on his drink and spit it up. His mother, startled, grabs some tissues and wipes his bearded face and neck. She leans over him to comfort him; and they are framed in a ray of light. They might be a pieta, except that her face is too tightly drawn, has no serenity, as though it might at any second splinter into a dozen pieces.
This is the new day, and it is broken.
Several people in this story have died: among them, two of Jim Johnson's Providence House charges, Buddy and Ken, and Ralph of Atlanta. Ralph survived longest—until July 16. His grandmother was beside him at the end. As he predicted, his parents did not attend his funeral.
On July 2, two of Ken's hospice-mates found him in his usual place—in front of the TV, remote control in hand, still wearing the glasses with only one lens. His eyes were wide open; they thought he was watching TV. He had been dead for several hours.
Buddy, pictured on this page as Johnson was taking him to the hospital Friday night, was released that Sunday. "He was obviously terminal," says his sister Jenny, but because he lacked insurance, "nobody wanted him." On Monday, Buddy's screams kept the people of Providence House awake all night. Through heavy sedation, he was pleading with Jenny to kill him. He died on Thursday night, June 25.
Jenny went back to Providence House to collect his things the next morning. On his bureau she found a letter, unmailed, to their mother. It read: "Dear Mom, I suppose you've been hearing that I'm not doing very well. But don't give my last shirt away. I'm not through yet."
*I am afflicted and ready to die...
Lover and friend hast thou put far
from me, and
mine acquaintance into darkness...
But I am like a green olive tree in the
house of God.
I trust in the mercy of God for ever
This story was written by
- Jennifer Ash,
- Marilyn Balamaci,
- Angela Blessing,
- S. Avery Brown,
- Linda Easterlin,
- Andrea Fine,
- Johnny Greene,
- Eleanor Hoover,
- Mary Huzinec,
- Tina Johnson,
- Jack Kelley,
- Maria Leonhauser,
- Joyce Leviton,
- Doug Lindeman,
- Benilde Little,
- Denise Lynch,
December 19, 2014
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