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A Fragile Lifeline: Lessons I Learned Answering The Aids Hotline
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
“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
“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
“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
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
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
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
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
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
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
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
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/
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
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-
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
“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.
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