Fourteen years later--a mother's story revisited.

Fourteen years ago, in Vol. 20 of the SIECUS Report, I wrote an anonymous story about discovering my daughter was HIV+ and the tragic family issues that ensued. That story received a lot of attention at a time when learning you had HIV was akin to a death sentence. This update, after the death of my daughter last fall, is my story now with full disclosure for others who may feel the need to hide behind their shame and secrecy. It's time for us all to speak up and speak out.

Mothers' Day Questions

  "Happy Mothers' Day" ... the words shatter like giant glass snowflakes
  down into a long, dark, hollow well.

  "Thanks, honey," I quietly sputter out the words to my partner. "But,
  I don't know if I'm still eligible. Can you still be a mother when
  your only child is gone?"

Gone: a tidy word for death. The D word was banned by my Mothers' group in New York City in the 80s, during one of the many crisis times on this journey now complete. "No D spoken here" was their motto, hiding nicely inside their cocoon of denial, hoping that it never would be a word spoken about their child living with AIDS. Waiting and wondering were my constant companions then. My daughter, a white heterosexual, non-IV drug user, became infected with HIV as a confused teenager experimenting with sex in Mnahattan, the epicenter of the early AIDS epidemic, maybe 20 years ago.

A lot has happened since then: since the early 1980s, 20 million lives have been taken by HIV/AIDS, "a figure that surpasses any single cause of death in modern history." (1) 42 million people today have AIDS (2), 19.2 million of them women, (3) and for the very first time the United States has just passed the one-millionth mark in cases of HIV/AIDS. Sadly, as the mothers of every person with HIV/AIDS, I am among the many of us who no longer have living children. If we were to look at the statistics from Uganda and AIDS (4), we would see that more than one half (56%) of the population of women ages 25-29 and 29% of those 15-19 are infected with HIV and will die of AIDS. We live in an illusion that we in the U.S. are safe and free from such harm. Unless we address the growing numbers of women who cannot use the new "magic bullet" approach in medications, for one or more reasons, such as my daughter's inability to stay on a maintenance program of drugs, we will see more women in this country become these staggering statistics as well.

As their mothers, we are the remainders, the unsung victims of the post-sexual revolution, an era escalated by the spread of this disease first noted among gay men, then bisexual men, then heterosexuals, then women. Now my daughter, a survivor of HIV/AIDS for almost 20 years, is a memory in 158 photographs pasted across the poster boards that sat in front of her memorial funeral service as a reminder of her life, while I question if I, her mother, am still eligible to wear the mom mantle.

Maybe we need another word. How about AIDS "madow" (pronounced like play-doh)? Half maternal, half widow, we face a loss so great it's hard to bear or describe. But I have a personal quest: to tell you what it's like to ride the horrific roller coaster of living with AIDS as the mother of a Person Living With AIDS (PWA), to tell you what it's like to live to see your child die of this horrible disease, up close and personal, to the cellular level of intimate connection. It's almost unimaginable how a mother could end up watching a grown 30-something woman, her only child, shrivel up to a whisper of a wracked, wretched body and not recognize her for the 90-year-old skeletal self she resembles as she gasps through her last weeks of life or what it's like to be sitting by the side of her dying grown child, holding her fragile hand until her last human breath.

Each of those 42 million people with AIDS and the millions yet to be counted, had or has a mother, it is for those mothers that I tell my story of grief and recovery. This is also my daughter's story and the story of how we as AIDS "madows" cope and thrive, despite our hideous loss. And, perhaps just as important, it is my prayer to help others recognize that this is a worldwide tsunami that's taking victims in the millions, especially women, and that this is the moment to care and do something about it before it's really too late.

PUTTING A FACE ON AIDS

On August 25, 1968, my daughter Holliday was born to me, a single mother in New England. At that time, it was not fashionable to bear a child and not be married. Those were the days of "illegitimate children" and scorned unmarried moms. But, being a rather unconventional woman of my times, I wore my Scarlet Letter with pride, knowing that a revolution was brewing, giving single women the right to be single moms, without the shame.

We lived for a year with my parents in a suburban town and shortly after that, with great support from them to care for a newborn infant, I decided to return to college and moved to Johnson, Vermont. At age two, Holliday began day care and early schooling. She was a clown, a perfect mimic, and a consummate comedian. People loved her lightness and silly ways. She was a typical kid, wearing her white undies on her head for hats and slurping spaghetti from the bowl until the strands filled the small kitchen we shared with one of my four sisters while we both attended college.

I loved those years, taking care of my daughter, watching her grow and thrive, and getting my own ducks in a row to be a good provider. Her early years would never have been so easy without the constant love and assistance (babysitting, a little cash now and then) from my loving parents, her "grams." She had funny names for everyone and the uncanny gift of being able to imitate anyone to a tee. She was a born performer. In fact, she began to play an instrument at an early age, following in the footsteps of her aunt, who was a mere 18 months older and who to this day is a virtuoso violinist. Those two were a born pair, more like sisters, and spent hours together in shared fun.

Holliday attended private alternative schools in kindergarten and elementary-level grades, with this non-traditional single mother dedicated to the finest education. She played the trumpet in school bands, which was a coup for a girl at that time. Always, she remained jolly, a light spirited girl, eager to grow and learn.

After college, I worked for the Vermont Planned Parenthood statewide affiliate for several years and kept an open dialogue with Holliday at every step along the way. I remember times when she would be in our VW bus, filled to the brim in the back with condoms and books for my rural family planning outreach travels. Once I hit the brakes too hard and all the condoms tumbled out at an intersection, which gave us red faces and afterwards hysterical laughs at how so-o-o many cars stopped to gape at what was in the road. Another time, I recall her helping us at the PP office to pop the expired pills out of their cases. Over the years, she played many other roles as an eager participant in the world of sexology.

As she was blooming into a pre-teen, we moved from the comfort of family and friends, a small world of being known, to the borough of Queens, New York. Her humor and gentle approach to everything was contagious. We had a wonderful time adjusting to our new lives and thanks to an aunt in Manhattan who allowed us both to enjoy a cultured life, we began to enjoy our new times together in the city. That was short-lived.

We lived far from the office of National Planned Parenthood and from the cultural and social events, and commuting into the city became a strain. A good friend gave us a tip on an affordable rental on the Upper West Side of Manhattan, a residential hotel which we dubbed "Greystone Manor." We joked repeatedly about how we should write a sitcom script about its people and dramas that we watched taking place there. We had a good time, and she began to play her trumpet in a competitive junior high school band. It was a joy to watch her attend that school. She thrived, doing well in her academic classes, keeping up with her trumpet practice, and blossoming into a beautiful young woman. When high school came around, she competed for the performing arts high school, and out of 3,000 was one of the 300 picked. I was so proud. I had high hopes for her to develop herself and perhaps apply to one of the musical conservatories in Manhattan, such as Julliard. She was that good!

New Patterns

Then one day at age 16 a new pattern began to emerge. There were nights when she would not come home until late. She began to change and gravitate to what I called and discussed with her as "the lowest common denominator" of life on the streets. And New York can be a very dangerous place, especially for a young teen who was trying to find herself. The signs continued to show when we moved to a larger, more comfortable apartment nearer to her high school. I thought this would make her happier, as she could avail herself of the many after-school options at this training ground for fine musicians, but that never happened. Over time I began to read the signs. She was not doing well in school and things were not as they seemed. She was getting up late, coming home late, and never talked about her class work, which I pushed her to do. Eventually the trumpet was abandoned and she showed signs of confusion while distancing herself from me.

One day it happened: She ran away. I found out from one of my sisters that Holliday had made her way to my sister's house in Vermont; having had such a strong tie with her grandmother (my mom), it wasn't surprising that she went back there. Perhaps this was some adolescent crisis that would pass with some time in a more familiar and safe environment. That wasn't the case. Within two days she had what we would call a "pre-psychotic break" and was rushed back to a residential treatment facility, where she spent nine months outside of New York City in treatment for what was diagnosed as bi-polar disease.

Every weekend I took three trains to visit her in the hospital which was renown as the best adolescent mental health treatment facility in the U.S. and which looked more like a gorgeous country club than a lock-up for the insane. She got stable, regained her sweetness and sense of humor, and eventually was placed in a group facility back in Manhattan with many open privileges. She got herself employment and took classes to get her GED. At last, I thought, she was going to be fine. But, I had no idea what was really brewing behind the smiling facade and apparent compliance with the rules at the group home. I went there weekly to meet with her and the clinical staff, all in attempts to normalize her to medications that would maintain her for life, establish a path back to finishing school, and perhaps restarting the trumpet, though it was clear that a career in music was not her destiny.

Changing Plans

I took a job in California at the urging of the residential clinical staff and with Holliday's permission, ready to escape the years of disappointment with her situation in NYC and ready to pursue greater horizons for my own career. I had the great fortune of being selected to run the first teacher training project in HIV prevention at ETR Associates, funded totally by the Centers for Disease Control and Prevention (CDC) as a showcase program. I loved it. I co-wrote four major training programs and began to travel and deliver them around the country. Meanwhile, I was in close contact with Holliday and her caregivers.

I was shocked one day, two months after my arrival in Santa Cruz, CA., to get a crisis call that Holliday had gone AWOL and had spiked a manic episode. She was in the emergency area of Bellevue hospital, along with a roomful of homeless persons and victims of violent street crimes. Was this MY daughter? My mother and sister flew to NYC and rescued her. I flew in shortly after and discussions began to unfold about her need for further care. Two more manic episodes later it was crystal clear that NYC without me wasn't working and that a new plan had to be made. The residence in NYC was not the answer, but perhaps living with my parents and attending day treatment in Vermont would be the cure.

One month later, as plans were being made for her transfer to Vermont, my mother dropped dead from a heart attack and the family experienced a major earthquake. Holliday was not going to Vermont, after all. After my mother's funeral and witnessing my father's weak state, I arranged for Holliday to be discharged to live in Santa Cruz near me. I had a tiny studio apartment at that time, but knew we could find her suitable housing. Soon after she landed on my doorstep, I moved to a larger apartment to accommodate this new paradigm. It wasn't long before she stopped taking her bipolar medications. Weeks later, another major manic phase occurred.

When she was manic, she was classical: grandiose, free spending with money, sexually irresponsible, and out of control. I could handle the depressive phases of her personality, although that was never pleasant, but the mania changed her into someone else, a personality that I abhorred. It took about a nanosecond to realize that living with me, bringing home strangers she met at bars, and not working or doing much of anything wasn't going to work for me.

Bingo, Infected

Holliday went on a road trip with one of her cronies and I was fortunately able to focus on my wonderful new job and dig into its demands. One day, I was sitting at my desk preparing for the first round of trainings, when a man's voice (an Army Medical Director) unexpectedly left a message on the phone, urging me to contact him about my daughter's health status. Did I know that she was trying to get into the U.S. Army? And did I know she was being rejected because she was HIV-positive? What?

Here I was, a national leader designing trainings and writing the first teacher training manual for HIV prevention and my own daughter has turned up HIV+. Impossible. There must be some mistake. But there wasn't. It seemed that during that phase in NYC before her "break" and the trip to Vermont, she had had unprotected sex with a young man in her GED program (whom the teacher had warned me was "not a good influence on Holliday") and who happened to be an IV drug user. Bingo. Infected.

This was the beginning of the long journey with HIV/AIDS. By the time she was assessed in the local clinics, her HIV had become full AIDS. She was to live many years with herpes, skin disorders, never-caught PCP, and to be on the edge of being diagnosed with some other opportunistic infection many times. Life was never going to be the same again.

THE JOURNEY OF HIV

Holliday had a journey that few young women her age may have endured. At times I had to show my own capacity for "tough love" and draw the healthy boundaries about what I would and wouldn't accept--bringing home strangers into our apartment, running astray, not working, spending months at a time in deep depressive limbo while not taking the anti-bipolar nor the HIV drugs. These patterns went on for the many years of the term of her disease.

Ups

In the early 90's I moved back to the east coast. This big step for me, was in part made possible by her progress in finding a wonderful support system, two steadfast AIDS buddies who remained a part of her life to the end, the Santa Cruz AIDS Project, friends, and a newfound spiritual path of Buddhist chanting that really gave her life a new blush of hope and community.

At that time, her housing was good, her health remained intact, and she was even well enough for one of the few periods in the course of her HIV/AIDS to hold a job as a full-time temporary postal worker, her all-time favorite career. There she was, in uniform, driving around the hills and valleys of beachside Santa Cruz county in a white-painted USPS jeep-like vehicle and living with her horrible secret of AIDS. I remember our joking about the terms they used (like "going postal!") and how happy being a part of the postal team made her feel. That, too, was short-lived.

Around that time, she met the love of her live which was perhaps the best thing that ever happened in her life. That man (whom we'll call Sam) became her partner, she got pregnant through unprotected sex which never infected him, and they were married in the midst of a huge crowd of thrilled and rather surprised friends. The news of her pregnancy sent chills up my spine, when I feared that could cause such a strain on Holliday's physical health that she might die.

When the announcement of her pregnancy hit home, members of a support group that I had joined helped me realize the positives about the new drug protocols. Holliday got involved in an experimental, landmark San Francisco peri-natal program and thrived. Her baby was born HIV negative and healthy. Our miracle baby! I was instantly in love with her, of course. Grandmothers bond with their grandchildren, just as Holliday did with my mom. I was so pleased to see such a good marriage that was so compatible, and watched Holliday become a great mother. Things were working well for them except for constant economic challenges, for which I helped as much as I could.

The pull to be with my daughter and grandchild deepened and I wanted to be closer to them, so I moved from Manhattan to San Francisco. Suddenly though, much to my great chagrin, Sam's mother wanted them to live near her in Florida. I gave them my blessings and managed to visit them and their adorable infant-toddler. I saw that Holliday seemed to be doing the best in her whole life, working in a spa resort with her husband, taking her AIDS medications, feeling happy, and being a great mother.

But problems began to emerge. There was rather poor health care for HIV/AIDS in that region, and their financial struggles grew. After two years, I convinced them to move back to California.

And Downs

After a couple of months her husband found a good job, but I noticed that Holliday was waning. A madow can read the signs: her health was not good even though she was a client of AIDS Project of Los Angeles, and I could sense her struggle in being a full-time mom. Perhaps more importantly, her mental health was on the slide. She seemed so unhappy in the tiny, disheveled house, which was a 50-minute ride from mine. She'd call me up and cry, "Mom, I feel so isolated, and it's so hard, taking care of the little one. I miss you, can I come over?" The answer was always "Sure, honey, whatever you need." But I began to doubt that things were going to get better. Something inside of me told me, "Keep a good lookout, Patti, things are getting worse."

One day, she called me, and in a quiet voice, filled with tentativeness and shock, she said, "Mom, I have some news. I think you're not going to like it ... Sam got a new job." She paused ... "It's in Santa Cruz and we're leaving next week." Then she sobbed. I couldn't stop him. He was determined to move back to an area where he felt he could thrive. He knew that things weren't good with Holliday where they lived. So he took a good job, and I rallied to their support once more.

The truth? This was the beginning of the dive downward. The financial pressures persisted, and they moved in with friends to what I can only say was an unhealthy hovel. I was appalled and scared for Holliday's mental and physical health. Quickly, Holliday's health declined. A few months later, when I could make it up there, I learned that she had gone off all of her HIV-related medications. There she was, lying in bed for hours, letting her little girl be babysat by a television screen, in a house that was bad for her health, with the demands of motherhood taking their toll and not much hope of change in sight. Sam, God bless him, did his best, struggling with many hours of hard work and trying to be a good dad and husband. Finally, after she had a total emotional breakdown during one of my visits and then attempted suicide by slashing her wrists in a hospital parking lot, she got into mental health treatment. And she got back on a chemical soup of anti-depressants, mood stabilizers, and of course, more drug cocktails to treat the HIV/AIDS.

She did get better and was more optimistic. From a distance, I attempted to help her get back into community college, where she had been a part-time student years before. Her voice changed and got faster, and her words were grandiose. I had to wonder if this was the new meds or if it was the return of the loathsome mania.

The Last Straw 

Her manic symptoms worsened, and after a rapid escalation, one day she simply left home. To me this was full mania, once again, running the show and destroying everything in its path. It was also the combination of drugs that tipped the scales. Days later and thousands of dollars of debt, she somehow managed to find strangers, all men, to take her in. Until the final curtain she lived with a man whom I've never met, but who helped her survive. She never returned home to be a mother again. I knew she was getting sicker when she began avoiding her daughter. I decided to help her husband get his divorce so he could escape the enormous debts she had created. Despite having joint custody, Holliday just couldn't handle having her child around. She cried on the phone telling me she couldn't control her, the house was too chaotic, and she didn't have the energy.

Holliday always told me, during those horrible two years of being absent from her child and me, that she was taking her medications from the AIDS project there. I wondered. In the summer of 2003 we visited her daughter together in Santa Cruz, thinking that if I were there she might reconnect and find the strength to be with an active five-year-old who longed to be with her mommy. But, I noticed that Holliday was not tracking conversations very well and that she had a visible and hideously ugly moluscum growth over her eye, which troubled me. She seemed weak, disconnected, and very unhappy. I assumed it was because of her living far away and feeling guilty about not seeing her daughter, and I began to work hard to encourage her to consider using her Social Security income and Medicaid options to move back to Santa Cruz to be nearer to her daughter and friends. She never took action, even when I pleaded and recited lists of action steps to what seemed like deaf ears.

A MOTHER'S TALE TO THE END

That is Holliday's story. Now it's my turn. The story is not yet over. This is what happened to me as a result of Holliday's decline and demise due to HIV/AIDS and bipolar disease--along with an inadequate, reluctant, and resistant medical system, and a world that doesn't fully acknowledge or address the real range of needs of people living with HIV/AIDS or what their families require to make it through.

June 10, 2004. She visits me in LA. She is not right. She is out of touch, standing and staring with a vacant gaze; she's making strange sounds, is hardly speaking, and looks terribly thin. We go up to the country and a gay friend (who is all too familiar HIV/AIDS) notices something is not right.

Later June, 2004. I begin to push her to get assessed at her AIDS program in Northern California, and to get on new meds. She admits to me, in a teary talk, that she hasn't been taking any medications for months. She is declining.

July, 2004. She goes to Santa Cruz to get into services, with both Santa Cruz AIDS Project and county health department services, both reputedly good projects for PWAs. She lives with an older couple who try to get her into proper care and back on track.

August 12, 2004. I drive up to see her with the plan to help her get new housing, arriving late and staying at my son-in-law's house. Fatigued and anxious, I arrive at the home of our friends to see Holliday. When I open the door I nearly fall down: I see a wizened, weak, and ill person sitting hollow-cheeked on the couch, with a horrid smell of death on her breath, "Who is this?" I nearly burst into tears and am in shock when I realize it's Holliday, who is very ill, dehydrated, wasted, and confused; they tell me she's been silent, not taking in fluids or food and lately has had bouts of sudden diarrhea. The next day I take her to emergency care where I then try to get her into a hospital/nursing facility; they say she's technically not sick enough. The caregivers insist on asking the patient, someone who cannot decide anything, what she wants. She can hardly stand up or speak.

August 12-17, 2004. I push the system; I try everything I can think of to make someone help us. I meet with social workers, public health nurses, medical doctors, and Santa Cruz AIDS Project staff, who alone are going to get her into an independent living home in town. I still feel she needs more supervised care and the county social worker balks at my insisting on this. I get her a mental health assessment but they cannot serve her. We have one final MD appointment at which time I cry out to the doctor, "Don't you see what I am seeing? I think she's dying. She is not going to make it." He is moved enough to test her mental faculties while I leave the room. When I return he whispers to me, "Patti, she has AIDS dementia." Finally, someone else sees what I see. A possible madow knows.

What can be done? They tell me, "Well, she can be in an Independent Care Facility and if things get worse, then she can get into more intensive care. Of course, she'll have to make her own meals." I think to myself, "Make her own meals? She cannot even track how to get herself a glass of water. She stands for hours gazing into space in one place. She's NOT going to make it that way."

I am told that I must wait for two weeks for her room to be ready. Our friends cannot keep her. I decide, with the loving support of my own partner, Robert, that I have no choice other than to bring her home with me to wait it out. She's given bottles of anti-depressants and threatened that if she doesn't curb the depression she'll never be compliant with the AIDS medications that are next. In our drive down to Los Angeles, she is barely able to drink, eat, or keep a focus. In her stupor, she manages to swallow the pills for me.

August 17-27, 2004. We return to LA and then drive up to the country home, where she can have a lovely room to herself with us in the next room and be nurtured by the beauty of nature in the summer. I notice she's waning, that she's failing. I try everything in my power to get her to drink and eat; I try to get her to take anti-depressants. She tries. She is dying. She cannot drink, she cannot eat, she cannot sleep. The severity of her waning and confusion, along with not taking in anything to eat or drink, begins to frighten us. We take her to the local hospital emergency room. I am crying. It's her birthday, must we? A doctor tells us she's dehydrated, then judgmentally and coldly quips, "Why didn't they force her to take HIV medications? That's her problem. Here, get these pills and make her take them," handing me a prescription note I cannot see from the blur of my tears welling up in my eyes. Don't they see what a possible madow sees? We get her the medications and for two days she tries to force them down her dry throat, drinking two ounces of water and barely swallowing 1/4 cup of soft food a day. This can't continue. She's going to die right here in our living room.

The Sunday before Labor Day Weekend, 2004. I have a video project meeting at in my house. I can't believe it's happening this way. She stays with Robert. Oddly enough, they are watching Emmy nominated comedy shows in his living room and guessing at the winners, all of whom she has picked correctly. That comedian self is still alive. At 5 pm he calls over to me and says, "It's time. We have to take her to emergency. Patti, we can't keep doing this. I think she's dying." Her lips are cracked and bloody, she's breathing with difficulty, eyes glazed over, and she hasn't drunk or eaten or taken any pills today. She must go with us. We drive back to the ER in our country town and I pray for a miracle. I pray for a doctor who sees what I see. We wait, then we are given unspeakable privileges by a divine power, with nursing staff who are incarnate angels. They arrange for tubal feeding and hydration for her while we wait, and then we meet her, the doctor we've been hoping for. "You are right," she says, "You can't handle this. She needs to be in a hospital. Let's see what I can do." After five hours in the ER lounge, they dismiss us to go home for rest. All that night I lie awake in bed, poised for the phone to ring while she tests Holliday to find a reason to admit her to hospital care. "It's spinal meningitis, Patti, but not the contagious kind. I can send her to a fine hospital down the hill. You can see her in about four hours there." I am so relieved. Finally, she is going to be helped.

The next day. We arrive only to wait some more. A young man introduces himself as our intern and begins asking a thousand questions, while my mind is spinning, longing to see her. She's lying on a gurney in the hall outside her room, with bags on bags on a pole and tubes in her like roadmaps. I have to keep my hand in motion to sign all the paperwork, especially to get control of decisions now. Words like advanced directives, living wills, power of attorney, all become a familiar part of my new vocabulary.

She recognizes Robert and me with a half-baked smile, and we begin the hospital visitations--11 days running, with two hour, one-way drives and five to eight hour visits in her room, and never once does she not know it's us. But oh, does she seem psychotic. She says things to me like, "Why are you floating over my head, mom?" or "Watch out, there are huge green lizards crawling up the walls." And there is always, always, the paranoia, "They want me out of here. I have to get out of here. I think they need this bed, I've got to go." That is to become her final mental state for the duration: constant fear and anxiety. It is so painful to watch; it makes me weep in silence. She won't drink or eat, so she remains on tubes to hydrate, feed, and take in the drugs.

Of course, being modern medicine, she is forced to take the AIDS medications. Always with the goal of a cure, these heroic measures bother me and her. I have horror-like memories of her pulling out her feeding tubes, of wrist restraints, of fighting with the night staff to take her off the tubing, of an unending battleground for her survival. The doctors with decision-making powers have Asian names and I never meet them. The social workers with their phones always on hold try to help, but their failed attempts are never enough. The lovely and warm nursing care staff provides the only solace I feel at the hospital.

I'll never forget the day I hit my wall. It is the third day and I've had it: no word from any MD yet. Finally, I corner the young intern, the only contact I'm allowed, and I say to him, pinning his body against the wall outside her room beside the 24-hour nursing police stationed there to make sure Holliday doesn't pull the plug, "Doctor, I need an answer today. I cannot wait another day. Neither can she. I need to know. Should we proceed with placing her in hospice?" His breath stops, he pauses, he makes a cellular call, and dashes down the hall. Minutes later he finds me to initiate the process. I weep a sigh of relief when he agrees with this almost-madow's prognosis. She is not going to make it out of here cured.

Labor Day Weekend, 2004. The medical team has changed and I have a smart new female resident, who's calling all the shots. At first, after the hospice diagnosis is made, they seem reasonable about the paper chase to get her into the hospice I have found and that I insist on for her placement, the Carl Bean House in LA, ten minutes from our city home. But Western medicine is governed by bed counts and curing patients. Now that the Do Not Resuscitate and the "do not administer any more medications" orders are in place, the pressures on me mount to get her out of there. I hate it. No social workers can resolve the paper needs; the doctor keeps pressuring me to get her out of the bed and into her choice of nursing home for the final ride. I resist and fight them all tooth and nail. They all fear she might die this weekend while we all wait for paperwork to determine her destiny, and keep up the constant phone calls pressuring me to let them send her away.

Tuesday, after Labor Day, 2004. Finally, I get through the bureaucracy and the word is "GO"--she's getting out of the hospital. The endless wait is over. My baby's going to the hospice to die.

The last 16 days in Carl Bean House. Now there are questions about if she can make the two-hour ambulance trip. She does. When I can get in, hours later, there are big black wrought iron gates in front of the hospice that remind me of the gates to heaven. I wince as they screech open for my visitation: heavy, dark, sinister, yet inevitably welcoming. It's destiny.

My sister, her youngest aunt, visits. We laugh and smile. I see Holliday light up, with intermittent clarity. She complies with eating and drinking without forcing--the care is stupendous. These are the living angels, those caregivers. No pushing, no heroic measures, no making anyone live. This hospice is about letting someone die--with grace, dignity, and comfort. Palleative care. What a gentle term. It's the only way to die--no more tubes; let her enjoy the last weeks or months.

It's ups and downs. At first it's ups; for ten days she seems better. Robert and I visit her every day, taking her in the wheelchair out to the atrium to watch the fish in the aquarium. The other patients are like seeing a concentration camp studies, but the care and love by the staff are always there, palpable, and the beauty of the place is healing. Holliday is increasingly paranoid, "Hey, mom," she whispers to me one day, "I have to get out of this bed now. I just heard them, they need the bed." Her crazy mind saddens me but she always knows Robert and me. One time, in the beginning of her stay there, one of the staff asks, "Is this your husband?" pointing to my partner Robert. She grins the most luminous grin, "No," she laughs in a half-conscious way. We then laugh as a team about her "husband, Robert" and it's part of the sweetness we all get to share for her time there.

Most of the time it's lucidity on vacation. Our friend, the nurse, is always there as a peaceful presence and all the staff are present to answer any question, including the Big Question: Will you know when she is about to die? The answer to that is yes, and I am floored that most normal people are not told the big secret, that the nurses know the bodily signs and symptoms of death--the change in breathing, the change in body temperature and blood pressure. The final performance of the human journey is calculated in signs. It's the final weekend. Robert and I notice that things have changed. And, the huge moloscum over her left eye has now closed the eye, which almost makes me throw up with grieving, and now it's spreading to the right one. If she lives much longer she'll be blind. I don't know if I can bear that turn.

A few days before she dies. I write this in my journal: 38 days and X hours later I calculate the length on my watch. I watch over her, Mother Bird over her chick caught in the barbed wire nest and failing fast. Time feels so precious and fleeting. I try to edit my new manuscript, but my thinking's a sieve with bats in the belfry. A million butterflies take flight in my skull, all on a wind heading her way. I can't focus. I can't think of anything but my Little Bird. How many hours are left? How many hours do I have to clutch a delicate swinging hand or plant loving kisses on a sunken sallow cheek or speak "I'm sorry's" and "I love you's" or yet another chorus-full of assurances to pack in her bags before the long train ride somewhere. Somewhere beyond. Somewhere unknowable. Somewhere where I hope angels play hopscotch and she can grow gossamer wings. Somewhere to be held in another mother's arms, one who waits at the gates for her e-ticket to heaven. How many hours are left? How can I shift the attention away from her--this vortex running on empty--and reboot my life towards me? I can't now. I count the days of a deathwatch. Was Nurse Dee on target or another false alarm today? How do we keep vigil on the dying and plant an arrow on the bullseye for the moment called Death?

I linger naked on the couch, shuddering at the thought of seeing her again, trembling with worry I won't stay composed, startled at the rapid decline. My black kitty feels my angst. He lies in a cat-wad, paws turned under, whiskers flared, nostrils open and eyes half-watching me. Waiting for me to return. Me. To return from the vortex. How many more hours?

The Monday after the weekend. But turn she does. She becomes listless, takes no more tastes or bites of the melon that Robert has convinced her to nibble on for him. No more drinks of the Ensure to keep her energized. No more getting out of that bed.

The day before she dies, something miraculous happens. Up until this point her mental state is so fragile and unclear that she hasn't been told she is going to die. Would that matter? Doesn't the self know? A madow wonders. A chaplain visits with her, along with his little fluffy dog, props her head up so that she can turn with her good eye to see him and they talk about death. They talk about how she is so loved by her mother and Robert, so much that the hospice talks about us all the time as the single most loving couple they've ever seen visit here at the hospice each day. And he tells her that the end is near, while his soothing voice and beaming smile comforts and guides her. I know in my soul that he is the instrument that allows her to begin to let go of her wracked body and let death take her to her peace.

Thursday, September 23, 2004, 8:47 AM. "Patti, it's Margo, from Carl Bean. Her deep wise voice trails off, "I think you need to come." It's "the call," the one every mother on the planet dreads receiving. The day she dies, the big wrought iron gates at Carl Bean House are being repaired and do not open. At 2:20 pm she is gone.

THE TALE CONTINUES, AFTER

The next day I wrote in my journal.

  I am sobbing oceans, torrents, tsunamis of saltwater, gut-wrenched
  tears. Bobbing on a huge sea of so much sorrow, I plunge, into the
  breakers, drowning, will I ever come up? On top of the ocean and
  ride-a-wave, the crashes against the shore, picking up, shaking it
  off, talking some more to caring, loving friends and family who never
  can know this grief the way I spit it back out like a baleen
  expiration. Grief. Will it ever stop? Twenty years of
  sorrow--grief--waiting--of sludge now pouring out like water through a
  sieve of a life ended too soon. A mother's sorrow too huge, too heavy,
  too deep to pass over lightly. I feel so many urges--to cry, to run
  away, to hide, to shout, to claw at the air like those flailing tiny
  bones-for-arms she conducted with in her hospital beds. Will Holliday
  show up, a broken spirit or as a whole angel, to say, "It's okay, Mom.
  I'm here. It's true. It's not really over but the struggle ..." I hope
  so. I miss her. I cherish those Little Bird handholds that measured
  the past two weeks in hospice care. I miss having such a huge to-do at
  the top of my daily list. I miss her half-eyes-open glances and
  half-made smiles. This was my child. She was my only baby, my own,
  from my flesh and blood and bone. Now a cement slab is her home.
  "Welcome home, angel, Mommy's here."

The next night I pray for a sign from her.

  I set up the shrine I now make portable to carry images and artifacts
  from the closet in tow where I set it up right after her death. An
  altar to my child, a respectful corner to honor her, her life. I found
  photos, though few, of the last few years and sprinkled them like
  diamonds across my dresser, parked like toy cars in front of photos of
  my gurus looking down at her. I pack up all the photos and beautiful
  albums and insert the Earth geodes a friend brought to her in hospice
  as a reminder of her origins. I hold her watch and glasses, clotted
  with the DNA of her living body that she shed each day. The three dead
  red roses from the small plant that graced her hospice room the entire
  16 days until they both died that Thursday, gave her and me something
  to see for its beauty. Now, me, lying in bed without her here, in the
  ethers, in the unknown, among the missing, I anchor myself in hope. I
  read aloud from a friend's book on Goddesses and find solace. I'm
  calming, centering, peace is on its way, at least for an instant. I
  pray that she'll reveal herself to me. That night an angel appears,
  sprinkles her fairy dust on my fingers that I have placed into the
  air, sensing a presence, and giving me the "knowing" that life doesn't
  end. She was there. She visited me that night. I fall asleep for a
  while.

After a few days pass, I write my awareness.

  Everyone dies. No one says the D word. We need to have a map. We
  deserve to know how it all ends, don't we? I ache with a lesser pain
  today. Maybe it was from going to my country house where she last
  slept before the hospital care and feeling that contact with her
  spirit. There is no pain left, just peace now. I am back to the
  present again. I tune into women in the cafe where I write, grateful
  for the beauty all around me--the grand fountain wakes up gushing and
  whooshing its soothing sparkling waters. The sound feels so comforting
  and a flash of panic grabs me by the throat, worried maybe I'll think
  of it as great cascades of tears, like mine gone quiet now.

MY INVITATION TO YOU

After Holliday's death I was overwhelmed by the outpouring of love, care, and support from literally hundreds of friends and a rejoining of my estranged siblings. That was the best gift of all. We all enjoyed a beautiful memorial service, and oddly enough, she had more people present for her funeral than it seemed for her life. She was deeply loved and adored by many, especially her Buddhist friends, her family, and my circle of dear friends who knew her and me over the many years. This memorial was a real testament to her wonderful spirit, her gentle way in the world, her humor, and her miracle of having such a beautiful daughter who is vibrant, bright, pretty, healthy and alive, and living happily with her dad in Santa Cruz in the home I helped him buy.

Without the expression of care, love, and support for me and my family, my madow recovery process wouldn't have been possible. Without a caring life partner by my side, this journey would have been far more agonizing. For that I am eternally grateful to Robert. Along with that, the expressing of all of the deep feelings along the way is part of how we as madows cope: feeling our way back into the light; honoring the dark spots and times are part of the journey we walk. We must let ourselves feel the loss, feel the grief, and move on. It is in the moving on, reconnecting with the power of life itself, perhaps, and doing something about this hideous disease and its ripple effects that lets me go on. I hope you will join me in honoring the women with AIDS who have died, their mothers, and helping me to advocate for a world in which we all learn to cope.

AFTERTHOUGHTS

I don't regret the amazing experiences that this journey has given me--some of which make me a better person, a wiser soul, and a more giving being. I hope my story helps you and yours.

At Holliday's memorial service, I read a quote from her birthday gift to me a couple of years ago, a little golden book called "Love Is a Beautiful Thing." On one of the ornate pages is written a quote from Henry David Thoreau: "Do what you love; know your own bone; gnaw at it, bury it, unearth it and gnaw it still."

References

1. NPR: AIDS Summit Opens with Renewed Calls to Action; quote from Thailand's prime minister, Thaksin Shinawatra. (2004)

2. WHO/AIDS Update: December 2002

3. Ibid.

4. From a speech by Dr. Douglas Kirby at the 2005 AASECT annual conference on his research on the reduction of AIDS in Uganda.

Patti Britton, Ph.D is a clinical sexologist and author of The Art of Sex Coaching: Expanding Your Practice (Norton, 2005).

SIECUS Report readers are invited to tell her their stories as AIDS madows or the stories of those they know. Write to PO Box 411, Lake Arrowhead, CA 92352-0411 or [e-mail].

Patti Britton, Ph.D.

Clinical Sexologist

Lake Arrowhead, CA

RELATED ARTICLE: LESSONS LEARNED

1. That the pain for a mother is to not be able to fix it for their child (We can't always "make the boo-boo go away").

2. That a mother knows when her child is dying.

3. That we as the madows must learn to accept, let them go, and live our own lives to the best we can.

4. That we must do something to right the wrongs of losing a child to HIV/AIDS, or any other preventable disease.

5. That dying is a graceful and holy process.

6. That to be the angel at the side of a child that you birth and that you death is an honor and a blessed event.

7. That death is not to be feared; it's suffering we fear.

8. That death is not final; there are memories that carry the person into the future even without a body.

9. That it takes courage, great strength, and conviction to fight against a bureaucratic system that is not geared toward letting patients die.

10. That dying is not failure. It is inevitable and often it IS the only option.

11. That dying from this horrible disease may be the pathway for peace.

12. That being fully present, relinquishing control, accepting the process of her dying whatever form it may take, is the pathway to our own salvation as madows.

13. That we the madows must speak up and speak out. We must tell the world what is like to watch a young, ablebodied, and able-minded adult wither, become mentally deranged, and to behold their wretched diseased body. That we the madows must help as a united voice to stop the spread of HIV, a fully preventable disease. And if we cannot stop its spread through prevention, we must scream loudly to advocate for our children's necessary care, including ample social and mental health care services, especially for people who suffer the dual burden of both HIV/ADIS and a mental health condition as my daughter did.

14. That with both full AIDS and an incurable bipolar condition (that in the end joined forces to kill my own daughter Holliday), we must have more openness and acceptance of the scourge these diseases bring forth.

15. Finally, as a sexologist it is my duty to report that it was sex that brought her into this life and sex that took her out. Please, don't become a madow if you don't need to. I sense that this was part of my own evolution and personal journey, but it's not an easy path to walk. Be careful with sex. Be sexually responsible: use safer sex and stay away from drugs. If you can save the life of your own child, regardless of his/her age right now, you will never have to share my enormous grief.