As the AIDS epidemic continues unabated, people living with AIDS are in danger of being overshadowed by AIDS "the issue"— a topic for movies, political wrangling, and opinion polls. This powerful collection gives voice to the people— those with HIV, as well as their caregivers— who do battle at the front line of the epidemic. It is an intense celebration of life led at the precipice. The themes explored in From a Burning House are simple and universal: love, fear, friendship, loss. But these works possess a unique quality, as they describe a world on fire, a world where lives are quickened by the reality of AIDS. For the writers in the workshop, the creative process can be healing. For the reader, the result is profoundly moving; a tapestry of writings that is at once witty, wise and a painfully vibrant connection to the way we live now. A portion of the editor's and writers' proceeds from the sale of this book will be donated to AIDS Project Los Angeles.
As the AIDS epidemic continues unabated, people living with the disease are in danger of bring overshadowed by AIDS "the issue." This powerful collection of stories, poems, and "fragments" gives voice to the people--those with HIV as well as their caregivers--who do battle at the front line of the AIDS crisis.A. Print features.
As the AIDS epidemic continues unabated, people living with AIDS are in danger ofbeing overshadowed by AIDS "the issue" a topic for movies, political wrangling,and opinion polls. This powerful collection gives voice to the people thosewith HIV, as well as their caregivers who do battle at the front line of theepidemic. It is an intense celebration of life led at the precipice.The themes explored in From a Burning House are simple and universal:love, fear, friendship, loss. But these works possess a unique quality, as theydescribe a world on fire, a world where lives are quickened by the reality ofAIDS. For the writers in the workshop, the creative process can be healing. Forthe reader, the result is profoundly moving; a tapestry of writings that is atonce witty, wise and a painfully vibrant connection to the way we live now.A portion of the editor's and writers' proceeds from the sale of this book will be donated to AIDS Project Los Angeles.
This anthology of writing by people with AIDS has the sad distinction of having the most wrenching Contributors' Notes imaginable. Since the workshop began in 1990, 44 members have died. The writing here ranges from the extremely professional to short fragments that carry very little weight, but most of it settles in the middle, with specific and personal autobiography. There is a sense, however, that showing off skills is not the point. Alan Erenberg recalls how his father arranged a "secret signal" (humming loudly) to warn his young son when the boy was engaging in what his father saw as girlish behavior. Frank Wang recalls sending home the body parts of a lover and fellow soldier from Vietnam. Much of the value here lies in the insiders' view of daily life with HIV and AIDS. "I want to rest/No/I want to eat/No/I want a Cola," is the opening of Dave Knight's edgy poem. Doug Bender describes how he insists on wearing a Hickman catheter (through which medications are infused) to the gym, even in the shower. In one of several stories about friends arranging their own deaths, Steve Smith details the painful complications of carrying out such a pact. John D'Amico provides a dry list of the things a friend has left behind, followed by footnotes that reveal the personal history of even the smallest object. Tony Kushner contributes a thoughtful introduction, and Borger both tracks the history of the group and provides instructions for starting other workshops. (June)
CHEMICAL MAN Robbie Hilyard This is how his days begin. He's out of bed and at the dresser where he tugs open the bottom drawer. His pharmacy, he calls it, containing his stash of precious relics of five opportunistic infections-and two years on the HIV circuit. There are pills to help him breathe, pills to make him cough things up, pills to smother his coughing so he can sleep at night, pills to make him sleep when it isn't the coughing keeping him up, pills to mask the itchiness when the combination of other pills causes his skin to erupt in nasty-looking red bumps that no one can identify, pills to smother the nausea from that same combination of pills so he can keep them all down, pills to shield his white blood cells from the ravages of other pills, further pills to ease his withdrawal from former pills. Pills to calm his nerves so he can go about his day and look the world in the eye. Pills enough to kill any presumptuous microbe rash enough to come within spitting distance of him. There is even a section of pills that he will never take again, pills that didn't work for him but are too expensive to throw out. A constant reminder and a silent reproach, for he has seen his medical record and it never says, "This medication did not work for this patient." It always states, blamingly, "Patient failed drug." Like computers, he figures, modern medicine is incapable of making errors. It is the human in him that has failed. Today his hand lingers over these last. Perhaps, one day, he will gather them all together and take them to his doctor. Maybe someone who can't afford to buy them can use them, will not fail them. But to the task at hand. Here is his little blue plastic pillbox with the six sections-one for each day of the week with a rest on Sunday, except that he does not get a rest on Sunday, and his regimen for the day more than fills the little blue pillbox so he has a second one, in pink, that he keeps at home with the pills for the end of the day, and a third, in white, with a beeper to remind him to take the pills that must be taken apart from meals. He puts so many pharmaceuticals into his body that he no longer feels quite human. He's evolved into Chemical Man. He knows he's not alone. There are others like him. Is this the future of mankind? he wonders. Are they the first of a new race? Homo pharmaceuticus. He reaches for the pills that will forestall the fungus from crawling again inside the lining between his brain and his skull-that mysterious region the doctor calls the "meninges," with almost lip-smacking satisfaction, as if these were somehow the Bahamas of the body-and all the little microbes who want to go there for some R and R. It was last winter when the fungus took over the area, reproduced enthusiastically, and tried to squeeze his brain out his ears. He'd suddenly understood then how it could be that people could get headaches so bad they banged their heads against the wall. But every time he moved to get out of bed, he barfed convulsively and never made it to the wall. The treatment, when he'd been carried to the hospital, had been nearly as lethal as the infection itself. The doctors called it "shake and bake." During the daily four-hour infusion, his temperature would plummet and his body would be racked with uncontrollable shivering. Just when the nurses got him packed under a mound of blankets so thick and heavy his body didn't dare to shake anymore, his temperature would rebound and soar off in the other direction. He would suddenly break into a fullbody sweat and be drenched by the time they got all the blankets off him, and still he would be tearing his gown off because it made him warmer than he could stand to be. The only reason he isn't still on this drug, or dead from it, is that the government-only five days after they isolated the fungus in his spinal fluid-finally granted approval to the little pills he is now shaking into his hand as a "maintenance therapy." Maintenance therapy. That means he will have to take these pills every day for as long as he lives. As long as he lives ... The lifesaving, life-sentence tablets are little pink trapezoids; they look like Flintstones vitamins. They are the driest thing he has ever had to force down his throat, worse even than the time his mother force-fed him saltines until he choked because he'd whined, "Mom, I'm hungry!" one time too many. These dust-bombs, he feels sure, could be used to drain swimming pools. He takes two a day. And the doctor can't say why he suffers from dehydration. Now he counts out the pills that are to prevent yet another episode of that garland of burning blisters that has come twice to clasp him off by the waist more warmly and tenaciously than he's ever been held in his life by parent or lover. Sleek capsules of robin's-egg blue. State-of-the-art, high-tech looking. They slide down his throat easily, comfortably. They even have their name and the name of their manufacturer printed right on them in a high-gloss black-presumably edible-ink. Black and blue; he won't even think about the implications of this color combination. Sometimes he hopes there is magic in this printed information, for it is his understanding that a virus is not, after all, a living organism, but a free-floating coding of information. And, he likes to think, even if the virus can't read, there is a certain comforting logic, or at least symmetry, in fighting information with information. The pink and the blue lie side by side in the To Be Eaten With Breakfast section. Pastelish. Easter-egg tones. These are, coincidentally, the colors he has picked as his healing colors. The colors of babyhood, the colors of new life. The pink and the blue help him reflect on the paired opposites of his life. The old conflict of the masculine and the feminine elements of his spirit, still unresolved, certainly, but no longer so important to him in the face of life and death, hope and fear, love and anger, body and soul. He tries to wear the pink, or the blue, or both together, as often as possible. They are his uniform of healing. His signal to the world that he has accepted the challenge, that he is living with this impossible thing in his life, that he is not satisfied with being told there's nothing he can do. Kneeling before the dresser now, he counts them all out in their established order. The succession of pills disappearing into the little pink and blue pillboxes is like a rosary, an ornament of his devotion to keeping alive. The line of pills is like a rope by which he pulls himself through the day, a week, an abbreviated lifetime. But it is also the chain that binds him to the earthly and the daily when he wants to fly. These white pills here represent another time that he went into the hospital. On this occasion, for five days and nights, he floated suspended between this world and the next, buoyed up by Demerol and weighted down by pain, while he waited for the baffled doctors to determine what was the cause-this time-for the return of the headaches, the nausea, the convulsive vomiting, the extreme fevers. He was also losing the sight in his right eye. He wanted to die. Finally someone on the hospital staff took his hand and said to him, "I just don't think it's your time to go. Why don't you step back into this life?" And, coincidentally, on that day, the doctors began treating him "presumptively"-that is, "as if" they'd identified an actual causative agent for his mystery ailment-and he soon began to get better. But he believes still that he is alive today not so much on account of the treatment, but because somebody bothered to invite him to remain in this world. Shortly after the presumptive treatment began, his eye got suddenly better, or at least stopped getting worse. It happened like this. Still in the hospital, he was watching the Ryan White Story on TV one night and for the first time in a long while he cried for someone else as much as for himself. When he drew the tissue away from his eye, he found on it a large rusty blot, the color of old blood. When he looked around the room, the world was suddenly bright as it used to be in the old days, but the picture was still distorted, and two large areas were missing. Black hairline floaters still swam across his field of vision, but there were fewer of them. He felt that he could see again, although it was rather like looking through running water or broken glass. He calls that eye his shattered opal. The little white pills are to keep the infection from crossing into his left eye and taking that one from him, too. Having lost his eye makes him feel like a hero in a great book or a fairy tale, who loses something precious to him in the accomplishment of his quest. But he is not a hero in a book, he lives in the real world, and he will have to live here without his eye. What he has gained, anyway, in exchange for his eye? A certain wisdom, perhaps? He's learned, for example, to feel home-sick in the hospital when he's never before in his life felt any connection to any place he's ever lived; he's learned that it is more fun to surprise the world with how healthy he can be, rather than with how sick; he finds, to his surprise, that the more connected he feels to his life, the less afraid he becomes of leaving it behind. He is learning to love his own life, just the way it is, and not desperately want somebody else's. He never asks himself if the lessons were worth the price. The ritual of counting out his pills concluded, he proceeds automatically with the unvarying routine of his days. In the kitchen, he puts the oatmeal on to boil and mixes up that day's batch of his nutritional supplement, the substitute food that gives him nourishment when he can't keep down-sometimes can't even take in-enough of the real thing, and he fills with water the two plastic pitchers that he will keep beside him throughout the day and try to empty into himself. But today he will do something different. Today, drawn by the music of the wind chimes on a neighbor's porch, he will linger at the open window over the kitchen sink. He will notice the softness of the air, its sweetness; he will see the red bells unfurling on the trumpet vine across the alley. Sometimes he forgets that he wouldn't have these things if he didn't work so hard to hold them. Sometimes, immersed in the struggle, he forgets that this is what it is all for. So today, after a while, he returns to the dresser-to his pharmacy-and he gathers up all those strays and leftovers, those pills that no longer work for him, and he puts them all into one of the lunch bags with the picture of the rabbit being pulled out of the hat. Today, he decides, is the day he will take them to his doctor for redistribution. Perhaps their magic will work for someone else. Perhaps they will give someone what he has: a chance to live.
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Title: From A Burning House: The Aids Project Los Angeles Writers Workshop Collection: The Aids Project Los Angeles Writers Workshop Collection
Author: Irene Borger
Publisher: Simon & Schuster Adult Publishing Group
Date Published: June 1996
- This anthology of writing by people with AIDS has the sad distinction of having the most wrenching Contributors' Notes imaginable. Since the workshop began in 1990, 44 members have died. The writing here ranges from the extremely professional to short fragments that carry very little weight, but most of it settles in the middle, with specific and personal autobiography. There is a sense, however, that showing off skills is not the point. Alan Erenberg recalls how his father arranged a "secret signal" (humming loudly) to warn his young son when the boy was engaging in what his father saw as girlish behavior. Frank Wang recalls sending home the body parts of a lover and fellow soldier from Vietnam. Much of the value here lies in the insiders' view of daily life with HIV and AIDS. "I want to rest/No/I want to eat/No/I want a Cola," is the opening of Dave Knight's edgy poem. Doug Bender describes how he insists on wearing a Hickman catheter (through which medications are infused) to the gym, even in the shower. In one of several stories about friends arranging their own deaths, Steve Smith details the painful complications of carrying out such a pact. John D'Amico provides a dry list of the things a friend has left behind, followed by footnotes that reveal the personal history of even the smallest object. Tony Kushner contributes a thoughtful introduction, and Borger both tracks the history of the group and provides instructions for starting other workshops. (June)
Library JournalThis collection of brief vignettes by AIDS victims and those closest to them is performed live in front of an audience by a remarkable cast, some of them the authors themselves. Here are descriptions of illness and death, anguished and baffled cries of despair and razor-sharp resentment. Most intriguing of all, though, is the frequent presence of humor amid all this suffering. AIDS humor defies analogy; how does one describe a literary form where heartbreak finds its most vivid and noble expression in raucous laughter? Women and heterosexuals with the syndrome are missing from this collection, and their absence is sorely felt. Still, much of the writing is superb and grandly performed, especially by actor David Hyde Pierce. As one might expect, there are graphic depictions of illness here, as well as profanity and explicit sexuality, so public libraries may want to use discretion when displaying the material. Recommended.-John Owen, Advanced Micro Devices Technical Lib., Sunnyvale, Cal.
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