"To be in the presence of the Quilt, to experience its messages and emotions is to be in the presence of the Holy: to be upheld and sustained by the knowledge that God's mercy has no end, that God's love endures, that God has received those who have died, and that the wounds of the living will be healed."
Blocks away from where it lay you could feel your heart pounding in your chest, the footsteps of others rushing ahead, not a moment to lose, one last time to see it.
A cacophony of sounds. Names read aloud, ten thousand and more, morning to night. Mothers and fathers, grasping podium and mike, naming the name most treasured in halting words of parental pain and loss . . . "And our beloved son, Michael . . . Our most precious daughter, Angelica."
Whispered words of joy and sadness. Friends reunited. A reunion of sorts . . . time for reflection, for caring, for comforting. The sounds of silence . . . tears and gestures . . . the language of the heart.
Helicopter overhead, hovering low. Safe haven. Safe distance. A presidential decision to remain above the national tragedy unfolded below.
Last month, in Washington DC, the NAMES Project AIDS Memorial Quilt was shown for the last time in its entirety. On an Autumn weekend, with sun and clouds frolicking above, the 14 acre Ellipse became the outstretched hand, the welcoming shoulder, the comforting breast on which 10,848 Quilt panels were displayed.
A work of art, crafted in mosaic-like pieces on kitchen tables and work benches in cities and towns across the country, the AIDS Memorial Quilt represents the pride and spirit of loved ones who used thread and fabric to create a kaleidoscopic portrait of the face of a nation.
It is images which come to mind when I think back to October 6th and the overwhelming impact of the Quilt. Colorful balloons adorning an infant's blanket; letters printed by a child in tribute to "The Best Daddy In The World"; words written by foster mothers about the babies they chose, and loved, and lost; the exquisite beauty of panels made by graphic artists and others trained in the craft; the precision and talent that go into the art of remembering.
I thought of the Sistine Chapel, the physical and emotional pain endured by its artist, the need to focus all of his attention on the task at hand, his days of self-doubt and moments of despair. I thought of the two mosaics: one on a chapel ceiling in Vatican City; the other stretched out on 14 acres of land in a nation's capitol. I thought of those who came to look . . . who paused in silence . . . who drew close to study a particular detail . . . who stepped back to look at the whole canvas: the realization that one was in the presence of more than the mind could grasp, more than the heart could hold.
Having created the Pieta, Michelangelo would have understood the pathos of the Quilt: the anguish of families and friends. He would have understood the words of a woman named Barbara: "How can anyone witness this and not be changed".
The hands that sculptured the Suffering Mother holding the broken body of her son, would have had empathy for the woman who wrote about her empty arms; who knelt down to the Quilt to record the name of the nightmare that stole her son away.
On the surface, the Quilt is a multi-textured, many hued, multiform work of art: a mural. At a closer glance, it is a photo journal, a story book, a diary, unofficial national record, protest literature and love letter. Were the words of the Quilt to be put to music one would hear an Ode To Love: A Mother's Song, a soliloquy, a prayer of intercession. The Quilt is a patchwork testimonial to ancient truths: life shall end, but love will never die.
The NAMES Project Quilt began to take form in the spring of 1987 when sewing bees were organized in apartments in San Francisco. Small groups of friends gathered to sew panels to memorialize the lives of friends and to ease the pain of the living. That June, forty panels were hung from the Mayor's balcony at City Hall. What began as a neighborhood effort has turned into a national drama of remembrance.
First displayed on the Capitol Mall in Washington, DC on October 1987, the Quilt's eighteen hundred panels covered an area equivalent to two football fields. Two years later, the handiwork of families, friends and lovers had produced a Quilt of breathtaking proportions. The Project's vision of the Quilt becoming a countrywide statement of love moved the hearts and hands of a nation. The ten thousand plus panels on display last month represented one sixth of all the persons in the United States who had lived and died with AIDS.
In the two and a half years since its inception, the Quilt has become multi generational, both with respect to the hands which have made it and those whose lives it represents. Grandmothers who learned quilting from their mothers took to the craft again to see to it that loved ones would not be forgotten and to help a younger generation find a means of holding on and moving on.
Men and women, boys and girls, children and youth have drawn, sewed, painted, embroidered, and sequined their affections into words and designs: reminders of the unrepressible sense of loss and need for community that AIDS bequeaths.
By design, the Quilt is intimate and corporate, personal and social. Most persons are remembered by name, terms of endearment, acts of courage, dreams, accomplishments and goals, or by moments and things held most dear: a rippling mountain stream, a last picnic in Golden Gate Park, a light left on to welcome one home, pets and other best friends, tickets to the opera, a child's toy, an infant's blanket, ballet shoes, eyeglasses and a pipe, teddy bears, a bouquet of flowers, the Eucharist, a cross, furs and T-shirts, photographs, poetry, an airline ticket unused.
The Quilt, also, remembers the unnamed and the unknown: "those who died alone"; "those in prison"; "a man who lived on the streets of Atlanta and who died in the arms of a friend"; "the forgotten"; "the silent voices of all the children"; "those whose names are withheld at the request of family"; "those who are deaf and who have died of AIDS; and "all the saints who from their labors rest".
In her introduction to the book, The Quilt: Stories from the Names Project, Elizabeth Taylor has written this about the Quilt, those who created it, and the reality which brought it into being:
"AIDS has come upon us with cruel abandon. It has forced us to confront and deal with the frailty of our being and the reality of death. It has forced us into a realization that we must cherish every moment of the glorious experience of this thing we call life. We are learning to value our own lives and the lives of our loved ones as if any moment may be the last.
"Many of us have lost loved ones to AIDS. We grieve. We suffer the seemingly endless pain. We bear the emptiness that yearns to be filled. We strive to find meaning in the fact that someone so dear has left us. We search for lessons to learn. We remember the joy, the passion and sensitive interconnections which filled our relations.
"The Quilt is a moving depiction of stories of loved ones . . . It reflects the true spirit of America. In their tragedy and grief over loss immeasurable, contributors to the Quilt have used art and love to keep the spirit of their loved ones alive.
"People with AIDS and AIDS-related conditions confront ultimate challenges. Their supreme courage n their personal fight against AIDS has set standards for all of us to follow. The Quilt gives us our most direct feelings back; our feelings of belonging, our sense of the precariousness of life, why it is worth clinging to, how it can be lived, how tragically it can be lost . . . how vibrantly it can be remembered.
"In the common bond of humanity, we are all one. We all possess the basic desires of wanting love and wanting to love. We all share experiences of love, pain, joy, sadness, anger and exhilaration. The Quilt . . . created out of love . . . is a rare and intense experience of what it means to be human."
The NAMES Project AIDS Memorial Quilt is one of this nation's most majestic pieces of art. Created by families, friends and lovers, the Quilt is a priceless treasure made of things that money can't buy: threads of love woven into a tapestry of remembrance.
It is because of my faith community, and my friends who are living with AIDS and those who have already died, that the Quilt means so much to me.
Not only is the Quilt an opportunity to remember and celebrate the lives of loved ones, it is a statement of challenge: an agenda of unfinished business.
Were the colorful Quilt panels to replace the stained glass windows that adorn most of our places of worship, we would need only to look up to seethe task at hand.
1. The Quilt: A Prophetic Reminder
The Hebrew scriptures remind us that Yahweh chose common people to give voice to God's will. Yahweh called prophets from the hills and the valleys to speak out; to give words of warning to the leaders and the powerful when they failed to hear the cries of the people: when they turned their backs on the mother, the child, the person in need; when they grew arrogant; when they became self-righteous.
Today, families and friends, are raising their voices, crying out to be heard, asking a nation and its leaders to listen and to heed. The Quilt, as protest literature, speaks of private pain writ large: a reminder that the human condition of too many persons who have lived and died with AIDS has been inhumane at best.
The Quilt panels dedicated to "those who died alone", "the silent voices of the children", and "those whose names could not be written" are about people who were created and loved by God and who were rejected and neglected by the rest of God's creation.
"Don't let my panel read that I died of red tape", speaks to the reality of many PLWAs. Red tape prohibited all but a few PLWAs from receiving AZT in clinical trials. Reimbursement red tape and the high cost of AZT keep many more from benefiting now. One mother's words said it well: "Greed kills. How many more sons must die?" How many women, children and persons of color will have to wait? How long and why? How many more therapeutic drugs will be priced beyond the reach of those who need them most?
The Quilt, as protest literature, reminds us that there are children dying alone in hospitals with no families or loved ones able to care for them; that persons who are living with AIDS in prison are the least likely to receive adequate therapy and treatment and are the most likely candidates for sanctioned neglect; and "those who died with no one to care" include persons with AIDS who lived and died on the streets, persons whose families would not take them in, persons who were abandoned by friends and lovers after AIDS was diagnosed.
The Quilt, as protest literature, is about who and what we are and what we do to one another in times of crisis and need. It is about personal comportment and national policy. It is about faithfulness and witness and intentionality. It is about being human and humane in the midst of a disease that is relentless and brutal, that racks the body and tears the spirit, that leaves gaping wounds in those who have lost the ones they loved the most.
2. The Quilt and the Grieving Process
The experience of grief is a natural component of the human experience of loss. Grief is something we experience in its most profound and pronounced form when we are confronted with life-threatening illness and death, whether they be our own or those of a loved one.
The AIDS Memorial Quilt's first panel makers came together out of a shared experience of loss and the need to remember. They took part in creative grief work and in supportive community. Both elements are important in the healing process.
The Quilt has provided a place and a way for people to learn that they are not facing AIDS alone, that they could name their pain and their anger, look at it, relate to it, learn to understand it, live with it, and find ways to move beyond it.
Sometimes the words that expressed loss were written by parents, by children, by care providers, or by persons with AIDS themselves. Each said it in his or her own way.
"I had four sisters and always wanted a brother. Jeff was born when I was 18 years old. I remember my Dad calling in tears from the hospital telling me that finally they had another son. Then I had to call him 23 years later to tell him that Jeff had died."
"Dear Mom, Dad, Nick and Kathy: I'm HIV positive. It's so hard without your love and support. May God give you the grace to listen. I need you. Love, Steve."
"My baby son; my little boy with golden hair; my schoolboy: so mischievous; my teenager full of ambition; Oh how I loved you. My beautiful young man; my philosopher; my cowboy; my bookworm; my gourmet cook; my executive and so much more. The pain of losing you is so great. I know you are free and at peace. You are always in my heart. I love you my dear son. Forever . . . Mom."
"Son, Brother, Uncle, Friend: You are not forgotten loved one, nor will you ever be. As long as life and memory last, we will remember thee."
"Dear Daddy, I miss you. Love, Your Daughter, Cheryl Monack, age 10."
"To my darling Johny: I miss you so very much. God bless your beautiful soul. Mom."
"To all my patients at Bellevue Hospital who have taught me what is really important."
"To the baby girl, I chose and loved and lost. A Foster Mother."
The NAMES Project Quilt was a nonjudgmental medium on which loved ones could write about their loss and grief. The Quilt, by its very nature, invited openness, candor. Representational art about a shared human experience, the Quilt represents not a finished work, but something in the process of being created. The Quilt is about remembrance and celebration and the attempt on the part of the living to piece life together again.
3. The Quilt: AIDS and Prevention
If there is one demonstrable change in the National AIDS Quilt this year from previous years, it is in the additional number of panels in remembrance of children.
The overwhelming tragedy of the AIDS Quilt is that by the time the scientific community knew AIDS was preventable too many people had already been infected and too many had died.
In order to prevent the further spread of the virus, churches, community groups, schools and child and youth serving professionals must intensify their efforts to reach those who are most at risk of contracting or spreading the virus. This includes working with at-risk women who, if they are already infected with the virus or become infected, can pass the virus to their babies during pregnancy or childbirth. It, also, means working with sexually active youth and those who are most at risk for drug use.
Dr. Jonathan Mann, director of the World Health Organization's Global AIDS Programme, warns of a complacency which is setting in at a time when renewed efforts in support of AIDS prevention are needed worldwide. Reports from this country's federal Centers for Disease Control indicate increased rates of sexually transmitted diseases in some cities and urban centers: an early warning that healthy behavior changes, prompted by the AIDS epidemic, are being abandoned.
Reports from the CDC and other groups refer to a smoldering epidemic of HIV infection among at-risk youth. Concurrent with this are increased instances of harrassmant against schools by religious groups and parents who do not want frank AIDS prevention education in the classroom.
It has taken almost ten years to realize that AIDS has had a disproportionately heavy affect on the young. We are aware, today, that persons can carry the AIDS virus for 7 to 15 years before becoming ill. So, too, are we aware that those who are living and dying with AIDS in their twenties and thirties were infected as youth and young adults.
What is there about the frank and honest education of our youth that is more frightening than their living and dying with AIDS? The Quilt is a rememberance and celebration of precious unique lives: of men and women, boys and girls who did not need to die. It is about a disease and a way of suffering that should not have been.
Today, the hands that made the Quilt are reaching out to communities; handing out educational materials; petitioning churches, families, and schools to work together to educate and support the young of this nation that they might grow and mature and develop healthy loving faithful relationships in families and communities free from the pressures and realities which promote substance abuse and the buying and selling of drugs.
4. The Quilt: Advocacy for Services and Therapeutic Drugs.
In this month's PLWA Column, Terry Boyd writes about the work that needs to be done despite what is being said about AIDS as a "manageable" disease. Terry knows all too well how unmanageable and unbearable AIDS can be.
All who are in need of services are not receiving them. Nursing homes and long term care facilities are still reluctant to care for persons with HIV infection. AIDS drug therapies are among the most costly drugs in the country and policies vary from state to state and from one insurance carrier to another regarding what costs will be covered and who will be reimbursed.
Clinical trials, with their stringent qualification guidelines, and the high cost of AIDS drugs exclude many persons with HIV infection leaving them without any type of therapeutic help, including far too many women, children, persons of color, and those who are in prison.
Churches, in coalition with interfaith AIDS groups and community based organizations, have a duty to remain informed about advocacy work that needs to be done at local, state and regional levels.
By 1992, this nation's hospitals, community services, home care providers and long term care programs will be caring for a larger case load of persons with AIDS than in any year to date.
AIDS has brought unimaginable suffering to hundreds of thousands of families across the nation. Unless persons of faith, in all walks of life, work actively to address the issues of AIDS prevention, treatment and services and what their churches can do, then, the worst of times is yet to come as more and more persons begin to manifest HIV related illnesses, as more and more infants and children with HIV infection are left in need of foster and adoptive care, and as more and more states seek funding to cover the cost of caring for those who are ill and in need of services.
5. The Quilt and the Church
The Quilt challenges our churches and our worshiping communities to be nonjudgmental places of openness where persons whose lives have been touched by AIDS can name their pain, can reach out for compassion and consolation.
Our churches must be what the Quilt has been: an outstretched hand, a welcoming shoulder, a comforting breast where pain finds Christ's mercy and the love and companionship of those who bear His name.
To be in the presence of the Quilt, to experience its messages and emotions is to be in the presence of the Holy: to be upheld and sustained by the knowledge that God's mercy has no end, that God's love endures, that God has received those who have died, and that the wounds of the living will be healed.
Afterward
In the pages which follow, you will find a responsive reading which uses words taken from panels of the AIDS Memorial Quilt. It has been prepared for use in services of remembrance, healing and AIDS awareness. It can be used with: THREADS OF LOVE: A TAPESTRY OF REMEMBRANCE. A moving ten-minute video about the NAMES Project AIDS Memorial Quilt, showing the quilt and individual panels made in remembrance of persons who have died from AIDS. Specify English or Spanish. The cost is $12.00.
Order the this video from: Health and Welfare Program Department, General Board of Global Ministries, The United Methodist Church, Room 330, 475 Riverside Drive, New York, NY 10115. Phone: (212) 870-3870
The video is also available from the Service Center (#1713): Service Center, General Board of Global Ministries, 7820 Reading Road, Caller No. 1800, Cincinnati, OH 45222-1800.
Threads of Love: A Tapestry of Remembrance
A Responsive Reading
(L: = Leader; C: = Congregation; A: = All)
L: The AIDS Memorial Quilt was made with hands of love in remembrance of those we hold most dear.
C: The Quilt is about our sons and daughters, our mothers and fathers, our brothers and sisters, our friends and neighbors. Bless the hands that have made the Quilt.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "The best Daddy in the world died of AIDS on March 2, 1987. I love you forever Daddy! Babydoll."
For all the children who have known the pain of loss, we ask your comfort, Lord.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "Dear Mom and Dad, Nick and Kathy: I'm HIV positive. It's so hard without your love and support. May God give you the grace to listen. I need you. Steve."
Give us the grace to listen, dear Lord. Our children and friends call out to us. Give us the courage to love and to care.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "You are not forgotten loved one, nor will you ever be. As long as life and memory last, we will remember thee."
Just as our names are written on your heart, dear Lord, their names remain with us. Just as you have not forgotten us, we shall not forget them. Ease the pain of remembering. Comfort us in our time of loss.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "We will always feel the empty ache of arms that long to hold you -- the never ending wish to hear your voice again -- to laugh together as we did before the nightmare stole you away. I love you always, sweet Billy. Hugs and kisses. Mom."
They are our children, dear Lord. God's own creation. More precious are they to us than all the riches in the world. When will the suffering end?
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "He lived on the streets of Atlanta, but died in the arms of a friend."
Where were we, dear Lord, when you were in need, when you walked the streets alone, when you were ill and had no home? Open our arms, Lord, that we might find you there.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us listen to the words of the Quilt.
C: "The memory of each of you lives in our hearts. With love from the doctors and nurses who served you."
In the worst of times, the best in life comes shining through. To embrace, to hold a hand, to listen, to pray, perchance to dream. Moments shared by those who care: those who go where others fear to tread.
A: We grieve and are in pain. Sustain and uphold us in this time of need. Have mercy upon us, dear Lord. Grant us thy peace. Embrace us with thy love. We are your people seeking to do your will.
L: Let us remember those who made the Quilt. Men and women, boys and girls, children and youth who have drawn, sewed, painted, embroidered, and sequined their affections into words and designs: reminders of the unrepressible sense of loss and need for community that AIDS bequeaths.
C: Created by families and loved ones, the Quilt is a treasure made of things that money can't buy: threads of love woven into a tapestry of remembrance.
A: The Quilt challenges our churches and our worshiping communities to be nonjudgmental places of openness where persons whose lives have been touched by AIDS can name their pain, can reach out for compassion and consolation.
Our churches can be what the Quilt has been: an outstretched hand, a welcoming shoulder, a comforting breast where pain finds Christ's mercy and the love and companionship of those who bear His name.
To listen to the messages of the Quilt is to be in the presence of the Holy: to be upheld and sustained by the knowledge that God's mercy has no end, that God's love endures, that God has received those who have died, and that the wounds of the living will be healed. Have mercy upon us, dear Lord. Grant us thy peace. We know you stand before us, with open arms, to welcome here all persons whose lives have been touched by AIDS.
