Lovable Blonde Seeks
During the first years of Linda’s illness, it was hard to believe she was in danger. She appeared vigorous, beautiful as always, engaged in her work, and open, after mourning Michael’s death, to finding new love. She went very public with her concern about the treatment of women with HIV/AIDS. She posted a relationship ad in the personals section of the Los Angeles Free Press stating that she was looking for a committed relationship and that she was an HIV positive woman. It was a first. Before long, the press was pursuing her for more information about her advocacy for HIV positive women.
Thirty years after she cut off her blonde curls to be like Joan of Arc, Linda founded Women At Risk, a foundation to support women with HIV/AIDS and bring public awareness to their unique medical, emotional and social needs. When she spoke to the media, she looked like what she called herself: “the girl next door,” the last person anyone could imagine being HIV positive. It made her an extraordinarily effective activist.
Why did this horror happen to her? Maybe it was her daemon; her spirit was destined to speak for the voiceless. Surely, I thought then, she and all those women for whom she carries the torch of awareness and empowerment will be healed. Almost certainly a cure will come in time.
Linda moved to Los Angeles just before she founded Women At Risk. Since she knew she would one day need family help, she chose to come back to California and share a house with her brother Tom. In LA, she could get the highest-quality medical care as the disease progressed.
The first of many illnesses struck when she was organizing an early WAR benefit. She had arranged for Paula Poundstone to perform at the Hollywood Improv. Tired and stressed, Linda fell prey to shingles, an opportunistic disease that attacks people with low T-cell counts.
Still living in denial about Linda’s future, I was torn with conflict about showing up for her public events. I was flying to Germany for the Frankfurt Book Fair the day after the Improv evening. Should I try to make it to the performance to support Linda? As Master of Ceremonies, would she feel more pressure if I were in the audience? In the end, still unsure, still hoping we had many years together and still wary of identifying with the AIDS community, I decided not to attend. I sent her flowers and pledged a donation to WAR.
For the second time, I missed an opportunity to be there for her. It was clear to me that I’d made a mistake. To amend that error, I attended every other program that Linda organized over the next five years.
Only their eyes showing,
camel drivers in blue turbans
have driven here with their carpets.
My guilt rides on golden ponies,
gilds the minarets.
You asked me to make this journey
with you through the gardens of Allah
open only on Fridays.
I chose to keep my prior appointment.
You kept your appointment.
Now I steal memories
from coins in the market,
from eyes of the dead.
We would have hired the guide to shepherd us
through the market teeming
with mint, cilantro and roast chicken.
We would have found the herbalist
to cure you
and finally removed our veils
talking over our separation
which we both healed apart.
As it was, you rode the camel alone.
I kept the Christmas card.
“Wear all white,” the organizers told us. It was 1993 and I had volunteered to be a monitor for the NAMES Project AIDS Memorial Quilt exhibition at Cal Poly. After seven years, Linda’s health had worsened, but she still worked hard at her career and fought for her cause, supporting those who needed her voice and buoyed by those who loved her.
The team members wore purple ribbons on their sleeves. I wore a red ribbon above my heart to honor the dead whose names appeared on the quilt that day. I purchased a T-shirt printed with a quilt design. The image included a heart, a hand with a needle and thread, and symbols representing male and female, infinity, and tears. As I held the shirt I traced the symbol of infinity and wondered, how much time was left to my daughter?
“How is Linda?” The woman at the T-shirt counter leaned forward, concern in her expression.
“She’s taking daily flushes to control her retinitis, but she’s doing well. She unfolded the NAMES quilt last week at an event with Ali McGraw. And she’s going to be presented with an achievement award from the city of Los Angeles for her work with Women At Risk.” I paused, then added softly, “Thank you for asking.”
The team laid out the NAMES quilt panels on the Cal Poly gymnasium floor, covered to protect the fabric pieces, for the event’s opening ceremony. When they finished, they lifted each section of nine panels overhead, one after the other. As we monitors walked a ritual circle and readers called out the names, it was as if the dead commemorated on the quilt floated above us.
As I listened to the names and dates written on each section of the quilt, I wept, dreading the day I would hear Linda’s name at such a ceremony. She participated in every experimental drug program, but even as I prayed that she would, I wondered if she could survive until a cure arrived.
In How to Survive the Loss of a Child, Catherine M. Sanders writes, “Of all the horrendous deaths of the present day, AIDS is the most stigmatic. Families of AIDS victims are avoided, alienated, and shunned more than any other bereaved person. AIDS has been called the modern day leprosy of modern epidemic proportions." (p. 116). Linda faced that alienation with courage. Through her own open call for love, she became a celebrity and a role model for other HIV positive women and men.
The year before the NAMES Quilt exhibition, Linda had come up to San Luis Obispo to speak at an AIDS Symposium. In the middle of her talk, a latecomer strode down to the front row. Linda said later that as soon as she saw this woman sporting a lavender suit, lavender shoes and lavender hair, she knew this would be her challenger.
When Linda invited questions, the woman rose.
“How can we protect the Kimberly Bergalises of the world, the innocent AIDS victim?” she asked. Kimberly Bergalis died in 1991. She claimed to be a virgin who was infected by her dentist, a homosexual.
“We’re all patients,” Linda responded. “We’re all innocent. We can’t distinguish between ourselves.”
After the solemn calling of the names of the AIDS dead, we walked among the nine enormous quilt sections. Many of the panels were appliquéd with favorite belongings: a teddy bear, and in one case two quilted tropical birds beneath the words, “Thank God for you, the wind beneath my wings.”
As a former prison teacher, I admired the oversized panel made by prisoners at the California Medical Facility at Vacaville. It depicted three men behind bars, wearing chambray shirts and blue jeans, the standard issue prison uniform.
The atmosphere comforted me like a friend’s embrace. I believed that the young people whose names were read that day — I say young because most of the dates of birth were in the 50s and 60s—had undergone their sacrifice in a larger spiritual sense to bring harmony and caring back to our country.
While that day paralleled rallies honoring the dead of the Vietnam War, the poet in me likened it to Woodstock. Revolutionary ideas were heralded in those muddy fields by a generation of young messengers thirty years before, and now—some of us veterans of that hopeful time—we participated in a new revolution of compassion and action. Perhaps this is a Woodstock for the 1990s, I thought, but rather than gathering to experience joyful social transformation, we’ve come together to birth change out of tragedy.
Cleve Jones strode across the room to shake my hand. Cleve had initiated the original NAMES project in the early 1980s to commemorate San Francisco Supervisor Harvey Milk’s murder and the first AIDS deaths in the gay community. He asked neighbors to post sheets of paper with the names of loved ones they had lost to AIDS on a public wall. The pattern of papers began to resemble a patchwork quilt.
Cleve started piecing together the actual quilt in an empty Market Street storefront and his commemorative statement soon caught nationwide attention. By 1993, the quilt included 24,000 panels, all of which were laid out on the National Mall in Washington, D.C.
“I met your daughter in Washington,” he said, clasping my hand. “She’s doing great work.”
One of the other monitors asked if I could help upstairs, where people were sobbing. I grabbed Kleenex boxes and headed up to see the newly designed panels on the second floor balcony. There, lying on the floor like open graves, were the completed three by six foot panels for our own San Luis Obispo County’s recent dead. I identified people I knew. It bewildered me to see their familiar names.
The opening ceremony came to a close. I’d given hugs, tissues, and comforting words to as many participants as I could. Rounding up the Kleenex boxes, I realized that this service reflected one of my life roles—as a mother, a publisher, a protester, a volunteer at the church homeless shelter, I am a monitor, an engaged witness.
The astrologer who did my birth chart pointed out that I serve the living and bury the dead. I care for my children, help poets find audiences, feed breakfast to the homeless, bear witness to life’s tragedies. I buried my father and attended my mother in her death. I try to protect the vulnerable from life’s harsh realities. But as I watched people leave the echoing gymnasium, I feared that I would not be equal to the task when the time came to help Linda die.
The demise of the AIDS Quilt, so vibrant and moving in its time, is unfortunate. Perhaps its gradual fading paralleled the growing belief that HIV/AIDS is a chronic yet manageable infirmity, at least in the United States. But it is still a global concern, morally stigmatized and fatal to tens of thousands in many countries.
I credit my daughter, who dedicated her life to supporting AIDS awareness and research for a cure, with having contributed to today’s healthier attitudes toward this illness. Because of her unabashed openness and determination to enlighten all who would listen, most people now understand that women and men with AIDS are not a medical and moral menace. They are good citizens, neighbors, parents, who live with a chronic disease.
God lives in an open heart, a heart like Linda’s. It’s there that divine healing begins. As painful and sorrow-filled as Linda’s battle with AIDS was, it was also the season of her soul’s recovery from the hurts of her youth. She grew stronger, more brilliant, in her outreach on behalf of women with AIDS. She and I reconciled—a great healing in itself.
I also learned to let go of much of the pain and guilt about my broken family that I had carried since the divorce. During her last months, I learned from Linda that the key to all healing is forgiveness.
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