A Fragile Lifeline: Lessons I Learned Answering The Aids Hotline

Dial 1-800/AIDSNYC

Every Monday and Wednesday morning, promptly at 10 a.m., I leave behind my daily life and turn to volunteering as an AIDS Hotline counselor at New York City's GMHC [Gay Men's Health Crisis], the nation's largest social service agency for AIDS.

For the next four hours, my co-volunteers and I sit in front of a bank of constantly-ringing telephones, talking to men, women, and teens who call in from across the nation with urgent questions about AIDS, the ravaging disease that has left 13.9 million people dead worldwide.

After almost 20 years, a whole generation, families are still facing the heartache of tending the sick, while scientists continue to be confounded by this stubborn, ravaging virus.

Although the federal government currently spends$4 billion per year on AIDS research, and $15 billion worldwide, there is no cure in sight for the viral infection and no vaccine available. Small wonder that the GMHC AIDS Hotline, the nation's first, is flooded with more than 40,000 calls each year.

Listening to callers 8 hours each week, I often think the Hotline is actually a direct link to the soul of callers--an anonymous forum that allows each to reveal secrets and fears that they might otherwise never discuss with anyone. A Morning in May

This is the way it began: "Good morning, GMHC AIDS Hotline, can I help you?"

"Yes...I have a question...[hesitantly] My son...he's 21...and he just found out...he's HIV-positive [voice breaking] I'm.....alone, divorced. And I need some help...someone to talk to..."

"Of course....happy to talk to you...it sounds like this has been devastating for you...."

"It's terrible. He told me two nights ago....he's...he's so young....I don't want him to die. He's my only child....why did this have to happen?" [crying]

Her son, she explains, had sometimes neglected using condoms, convinced he wouldn't contract HIV infection from his female partners.

"How could he be so stupid?" she now asks angrily. "Why didn't he know how to protect himself? I don't understand. What am I going to do?"

We talk for 35 minutes, and by the end of the conversation, I notice I'm barely breathing. The distraught woman's anguish is palpable. Her situation is every mother's worst nightmare.The life of her child is in jeopardy and she feels helpless and afraid. I can't imagine anything worse.

During the call, I do my best to employ the GMHC Hotline protocol of "active listening," which involves using silence, empathy and gentle probing with open-ended questions. I'm also having my own emotional reaction to the panic in her voice, and I'm worried about whether I'm doing enough.

Toward the end of the clal, when she exclaims: "I don't want my baby to die," my heart plummets: "I know....I understand that, but there is hope," I tell her. I find myself on the verge of tears.The Bad News

This mother's story is too common. According to the Centers for Disease Control in Atlanta, Ga., 40,000 Americans (half of them under 25) are newly infected with the AIDS virus each year. Unprotected sex and intravenous drug use remain the principal modes of transmission.

"Teenagers," notes AIDS activist Elizabeth Taylor, "are being very hard hit." She refers to the three million adolescents who contract a sexually-transmitted disease annually.

"Heterosexual teenage football players who are healthy and drink milk can get it too!" says the 71-year-old actress, who has singlehandedly raised $150 million for AIDS research. "But teens are very ignorant and feel invincible. They believe there's an invisible shield protecting them from the virus, when it's actually aimed right at them."

Taylor believes in addressing the problem head-on: "Tell your teenage son: 'Maybe a condom doesn't feel as good, but if it saves your life, it's better than being six feet under.' Intelligence must replace random sex."

Although a new generation of AIDS-fighting medications is prolonging the lives of thousands, nearly half of the 900,000 people infected with HIV in the U.S. cannot afford these drugs. Since the virus was discovered in l981, 410,800 Americans have died from AIDS-related complications, and the disease has left 13.9 million dead worldwide.

Who Calls a Hotline?

Not long ago I took a call from a 15-year-old boy living in a small town who said he feels guilty about his sexual attraction to other boys and is scared to discuss this with his parents. I ask him if there's a school counselor or relative he might talk to, but he says he's too afraid to confide in anyone.

Being a teenager is hard enough, I thought, without the pressure of keeping this kind of secret. I felt angry and saddened that this child can't comfortably discuss his feelings with his own parents.

I encourage him to call the Gay Community Center Youth Program in a nearby city. In the meantime, I assured him that he could call our Hotline anytime, that we'd be there for him.

This call was typical of the many we get from teenagers,whispering from their parents' homes, confiding their blossoming sexual feelings and concerns. Our Hotline also receives calls from married men who phone from their offices, worried about extramarital sexual encounters; gay men suffering side effects from medications; mothers caring for a sick child or grieving for one lost to AIDS; even health care professionals themselves confused and requiring burnout support.

One particular morning, I'm struck by the number of single women who turn to our hotline for help. At 10:15 a.m. a distraught young woman calls, explaining that she had been dating someone "very charismatic," after a two-year period of sexual abstinence.

"At first we used condoms and I was taking the pill to avoid pregnancy," she says. But after her partner assured her he was HIV-negative, the couple began having unprotected sex. A few months into the relationship, she recounts, his behavior became "unpredictable," until he finally admitted he was sleeping with other women and was addicted to heroin. Now she has to withstand the "terror" of waiting 3 months before getting an HIV antibody test. To help her cope, I give her the names of three terapists in her area. The call lasts 43 minutes.

At 11:15 a.m. I take a call from a woman who is breathing heavily. She says that four months earlier she'd had a brief affair with a limousine driver, "not out of passion, but because I felt lonely. This was so totally unlike me," she continues. "I come from a traditional Orthodox Jewish family..." Although they used condoms, and she has since tested negative for HIV, she feels deeply ashamed, and has stopped seeing him. And because she has both a persistent vaginal yeast infection and a rash on her neck, she's convinced she must be infected by HIV.

Although rashes, high fever, swollen lymph glands, heavy night sweats, sore throat, or other flu-like symptoms may indicate HIV, they can just as easily accompany the common cold or flu, or other type of infection. I encourage her to seek medical help and counseling, but the calls ends on a down note. "I must have it [AIDS]," she moans. I'm exasperated because it doesn't sound that way to me, yet I can't get through to her. The call lasts 22 minutes.

It's 11.38 a.m. when a well-spoken woman, who says she's an attorney, calls from her office, asking for the names of anonymous testing sites. At first very businesslike, she calmly takes down all the information. I ask her why she's considering a test. Total silence. Then she begins to cry: "I....I can't talk....I'm sorry...you see, I have swollen lymph glands....[crying]....And my doctor wants to rule out HIV...I feel overwhelmed..." Then, abruptly: "Where can I send a donation?" She thanks me and hurries off the phone after just 3 minutes.

These were one-time callers, but, as in any epidemic, an element of panic prevails, and our hotline also attracts an army of "chronic" or repeat callers who are intensely fearful no matter how benign their risk, many revealing continued misconceptions and paranoia about a disease that can be effectively prevented. We do our best to help them, but often they're impervious to counseling.

Most poignant are calls we get from AIDS patients, phoning from their hospital beds, attempting to navigate the exhausting labyrinth of insurance and health care matters. One man, in hospice care, said he craved companionship and missed the "good old days" when he was handsome and healthy.

That call was a tough one for me as just the day before a close friend of mine, Joe, who had battled HIV for 16 years, had finally succumbed. Although at the end Joe was a mere skeleton, he was nonetheless at peace. "I've done what I wanted to," he told me on our last visit. An avid gardener, he insisted on a final trip to his country house to see his garden one last time. For a moment the caller's reality and the memory of my deceased friend blurred in my mind and I was overcome. Time for a break.

Face to Face

One of the most and unique services GMHC offers is called "A-Team Counseling," a one-time, in-person session that's free and anonymous.

Recently, I was on an A-Team counselling a 26-year-old HIV-infected mother from the Midwest. She had traveled to Manhattan by bus to find her estranged boyfriend, who, she recounted tearfully, had kidnapped her 7-year-old son. Disheveled, painfully thin, the woman was a disturbing sight. She's learned that the two had already returned home where the boyfriend was, and the child put in his grandmother's custory. custody of his grandmother. Meanwhile she'd run out of money for the return trip, been refused a loan by her family, lost her ID, gone hungry and spent two nights on the street.

Fortunately, this woman was registered at a local AIDS organization in her town. I telephoned her caseworker and persuaded him to buy her a one-way Greyhound bus ticket for $115.00. I also gave her subway tokens, a basket of food, juice and coffee. Smiling shyly, she thanked me for caring.

Shaking hands good-bye with this woman was a bittersweet farewell. What will happen to her? I wondered will her health deteriorate or improve? Will she gain control of her life and be able to provide for her son? I'll never know. One thing I do know: She'd appeared with the sorrow of a difficult life in her eyes, but when she left, she was elated at the thought of being reunited with her child. It seems that with faith and a helping hand, almost anything is possible.* * * * *

10 BIGGEST MISCONCEPTIONS ABOUT AIDS AND HIV(This list would probably be most effective when presented in a vertical chart, the misconception on the left, the correct answer on the right.)

1)The AIDS virus can be transmitted through saliva, sweat, tears, urine or feces; also through deep kissing.

1) HIV can ONLY be transmitted through four bodily fluids: blood, semen, vaginal secretions and breast milk--and can also be transmitted from a mother to her child before birth, during birth, or while breast feeding. The exchange of saliva through kissing is no-risk, unless the saliva has blood in it and both you and your partner are bleeding in the mouth simultaneously.

2) HIV may also be transmitted through casual contact with an infected person.

2) You can't get infected from toilet seats, phones or water fountains. The virus can't be transmitted in the air through sneezing or coughing. You can't get HIV from sharing utensils or food or from touching, or hugging. HIV dies after being exposed to the air. Therefore, touching dried blood on a shaving blade, a toothbrush or a bathroom counter top is no risk. In any case, unbroken skin is impermeable, like a rubber raincoat, and cannot absorb the virus whether it's alive or dead.

Blood transfusions and medical procedures in the U.S. are safe. Giving blood is completely risk-free. The chance of getting HIV from dentists or other health care providers is too low even to measure.You can't get it from mosquitoes or other insect or animal bites.

3) Oral sex is just as risky as vaginal or anal intercourse.

3) Although not 100% risk-free, oral sex is considered a low-risk activity,except if: you have bleeding gums, recent dental work, open sores such as a herpes lesion, any cut, blister, or burn in the mouth, or if you've just brushed or flossed your teeth. Also, oral sex with an infected woman is riskier if she is having her period, since menstrual blood can contain HIV. Overall, latex barriers, (such as condoms or dental dams) used during oral sex reduce the transmission of not just HIV, but other sexual transmitted diseases.

4) Animal skin, latex and polyurethane condoms are all equally effective in preventing HIV infection and you can use ANY lubrication on the condom desired.

4)Only latex or polyurethane condoms may be used, as HIV can pass through an animal skin condom. With latex condoms, only water-based lubricants--like K-Y jelly or H-R jelly--may be used. No lubricants with oil, alcohol, or grease are safe.Petroleum jelly,Vaseline, Crisco, mineral oil, baby oil, massage oil, butter and most hand creams can weaken the condom and cause it to split. However, with polyurethane condoms, petroleum-based lubricants can be used.

5) Women have to rely on men using condoms during intercourse to protect themselves against HIV.5) Women may employ the "female condom," a plastic sheath that can be inserted in their vaginas and used for protection against HIV. It can be inserted up to 8 hours before sex, has rings at both ends to hold it in place and can be lubricated with oil-based lubricants that stay wet longer. In addition, women can carry conventional condoms for their male partners' use.

6) If a woman is HIV-positive, her offspring will automatically be born infected with HIV.6) With no medical treatment taken, about 25% of HIV-positive women will give birth to infants who are also infected. However, the use of anti-HIV medications has resulted in a significant decrease of mother-to-child transmission of HIV in utero and during delivery to less than 5%. (NYT 10/19/99].

7) AIDS is fundamentally a gay disease contracted by white males.7) Recent data compiled by the Centers for Disease Control and Prevention indicate that young gay Hispanic and African-American men and heterosexual women are the fastest growing segment of the population being infected with HIV. Women now account for 43% of all HIV infected people over age 15. [NYT 11/24/98] African-American and Hispanic women account for more than 76% of AIDS cases among women in the U.S.

8) Heterosexual men are not really at risk for contracting HIV, even if they don't use condoms.8) The inside opening of the penis is composed of highly-absorbent, sponge-like mucous membrane tissues, which can provide a route for HIV-infected vaginal secretions or blood to enter the bloodstream. Proper condom use protects men from infection.

9) The AIDS epidemic is largely over because new AIDS medications like protease inhibitors and others have turned AIDS into a chronic, not a terminal disease. 9) In the U.S., AIDS is the fifth leading cause of death for people 25-44 years old. Roughly half of all those infected with HIV in the U.S. are not receiving any medications or medical care. AIDS now kills more people worldwide than any other infection, including malaria and tuberculosis.[NYT 11/24/98] In 1998 alone, 2.5 million people died of AIDS worldwide. 13.9 million people have died since the virus was discovered in 1981.

10) If you think you've been exposed to HIV through unprotected sex, you can take an HIV antibody test 2 weeks later and get an accurate result.

10) The standard "window" or waiting period remains a full 3 months. However, because the widely-used HIV antibody tests (The ELISA and Western Blot) have become so sensitive, about 95% of people will procure an accurate result 4-6 weeks after a possible exposure to the virus.

* * * *[Note:The information stated above was reviewed for medical accuracy by Dr. Todd J. Yancey, an infectious disease specialist practicing in New York City and affiliated with New York Presbyterian Hospital, NY, Cornell Campus.]

THE CHILD LIFE PROGRAM

"Mommy takes a lot of medicine and Mommy's really tired sometimes and she can't take you to the park as much as she used to. It's not that I don't love you...and that I don't want to...but Uncle Jack's going to take you to the park today." --A mother living with AIDS, a client at GMHC, talking to her 6-year-old son.

In New York City alone, 28,000 children have been orphaned by AIDS since the epidemic began [NYT 12/13/98]

GMHC's unique Child Life Program serves HIV-infected parents and their children--who may, or may not, be infected with the virus. "We help families strengthen their ability to cope, relieve the pressure of parenting with support services, and teach parents how to talk to their kids," says Child Life Program Coordinator Alison Ferst. "Unfortunately, should a parent or child be sick enough to be facing death, we also help them walk through it with grace and dignity---as opposed to feeling alone, isolated and frightened.

"We also encourage sick parents to make stable legal plans for their children who may be left behind," adds Ferst, "and to have disclosure conversations with the children in advance, so you don't have a child standing at her mother's funeral, not sure where she's going next."

When an HIV-infected Mom arrives at GMHC to have lunch, attend a support group, consult with a lawyer, or access the acupuncture clinic, she can leave her children in a spacious playroom, decorated with fanciful murals and a giant tree hand-painted by the famed children's story writer and illustrator, Maurice Sendak, who donated his art. [see photos] The program provides: child-sitting, nutrition services, a food pantry, art and magic classes, and recreational trips--church picnics, seasonal apple-pumpkin picking, amusement parks, zoos, museums, beaches. Also: homework help sessions, holiday parties, hospital visits, summer sports and weekly support groups for HIV- positive parents and their HIV-negative children.

This unique program also features: Cooking classes for kids who sometimes prepare meals for sick parents; Pediatric Buddies, GMHC adult volunteers who play with sick children and also assist with family chores; Fun With Feelings Support Group, Friday Evening Family Time, Birthday parties, and a Holiday Gift Drive.

"Children infected or affected by AIDS," concludes Ferst, "want to be like other kids: They want to play with their friends, want to know that someone will always take care of them, want to know they're not alone, and often wonder if it's their fault when Mom or Dad gets sick." These children need a helping hand and any of us can provide one.

Bestselling author GLENN PLASKIN is one of the nation's leading psychology reporters and celebrity interviewers. His specialty today is interviewing the nation's top experts in spirituality, motivation, happiness, and self-improvement. A contributing editor at FAMILY CIRCLE, the world' s largest women's magazine, he is available for TV, radio, and print interviews. He also coaches those interested in writing articles and books.He can be contacted directly: glenfamilycircle@aol.com

He is the author of two books--HOROWITZ--the biography of Vladimir Horowitz--and TURNING POINT: Pivotal Moments in the Lives of America's Celebrities. His celebrity interviews have appeared in Family Circle, US, Ladies Home Journal,Playboy, the New York Times, the New York Daily News, and more than 50 U.S. newspapers.