A Fragile Lifeline: Lessons I Learned Answering The Aids Hotline

Dial 1-800/AIDSNYC

Each Monday and Wednesday morning, promptly at 10 a.m., I go away behind
my each day life and switch to volunteering as an AIDS Hotline counselor at New York
Metropolis’s GMHC [Gay Men’s Health Crisis], the nation’s largest social service
company for AIDS.

For the following 4 hours, my co-volunteers and I sit in entrance of a financial institution of
constantly-ringing telephones, speaking to males, ladies, and youths who name in
from throughout the nation with pressing questions on AIDS, the ravaging illness
that has left 13.9 million individuals lifeless worldwide.

After virtually 20 years, an entire technology, households are nonetheless going through the
heartache of tending the sick, whereas scientists proceed to be confounded by
this cussed, ravaging virus.

Though the federal authorities presently spends$4 billion per yr on
AIDS analysis, and $15 billion worldwide, there isn’t any treatment in sight for the viral
an infection and no vaccine out there. Small marvel that the GMHC AIDS Hotline,
the nation’s first, is flooded with greater than 40,000 calls annually.

Listening to callers 8 hours every week, I typically suppose the Hotline is definitely a
direct hyperlink to the soul of callers–an nameless discussion board that permits every to
reveal secrets and techniques and fears that they could in any other case by no means talk about with anybody.
A Morning in Could

That is the way in which it started: “Good morning, GMHC AIDS Hotline, can I assist

“Sure…I’ve a query…[hesitantly] My son…he is 21…and he simply discovered
out…he is HIV-positive [voice breaking] I am…..alone, divorced. And I want some
assist…somebody to speak to…”

“After all….comfortable to speak to you…it feels like this has been devastating
for you….”

“It is horrible. He informed me two nights in the past….he is…he is so younger….I do not
need him to die. He is my solely baby….why did this should occur?” [crying]

Her son, she explains, had generally uncared for utilizing condoms, satisfied
he would not contract HIV an infection from his feminine companions.

“How may he be so silly?” she now asks angrily. “Why did not he know
the way to defend himself? I do not perceive. What am I going to do?”

We speak for 35 minutes, and by the top of the dialog, I discover I am
barely respiratory. The distraught lady’s anguish is palpable. Her state of affairs is
each mom’s worst nightmare.The lifetime of her baby is in jeopardy and she or he
feels helpless and afraid. I am unable to think about something worse.

In the course of the name, I do my greatest to make use of the GMHC Hotline protocol of “lively
listening,” which includes utilizing silence, empathy and mild probing with
open-ended questions. I am additionally having my very own emotional response to the panic
in her voice, and I am anxious about whether or not I am doing sufficient.

Towards the top of the clal, when she exclaims: “I do not need my child to
die,” my coronary heart plummets: “I do know….I perceive that, however there may be hope,” I inform
her. I discover myself on the verge of tears.
The Dangerous Information

This mom’s story is just too frequent. In line with the Facilities for Illness
Management in Atlanta, Ga., 40,000 Individuals (half of them beneath 25) are newly
contaminated with the AIDS virus annually. Unprotected intercourse and intravenous drug
use stay the principal modes of transmission.

“Youngsters,” notes AIDS activist Elizabeth Taylor, “are being very laborious hit.”
She refers back to the three million adolescents who contract a sexually-transmitted
illness yearly.

“Heterosexual teenage soccer gamers who’re wholesome and drink milk can
get it too!” says the 71-year-old actress, who has singlehandedly raised $150
million for AIDS analysis. “However teenagers are very ignorant and really feel invincible. They
consider there’s an invisible protect defending them from the virus, when it is
really aimed proper at them.”

Taylor believes in addressing the issue head-on: “Inform your teenage son:
‘Possibly a condom does not really feel pretty much as good, but when it saves your life, it is higher than
being six ft beneath.’ Intelligence should exchange random intercourse.”

Though a brand new technology of AIDS-fighting drugs is prolonging the
lives of 1000’s, practically half of the 900,000 individuals contaminated with HIV within the
U.S. can’t afford these medicine. Because the virus was found in l981, 410,800
Individuals have died from AIDS-related problems, and the illness has left
13.9 million lifeless worldwide.

Who Calls a Hotline?

Not way back I took a name from a 15-year-old boy residing in a small city who
stated he feels responsible about his sexual attraction to different boys and is scared to
talk about this along with his dad and mom. I ask him if there is a faculty counselor or relative
he would possibly speak to, however he says he is too afraid to open up to anybody.

Being an adolescent is tough sufficient, I assumed, with out the stress of
retaining this sort of secret. I felt indignant and saddened that this baby cannot
comfortably talk about his emotions along with his personal dad and mom.

I encourage him to name the Homosexual Neighborhood Middle Youth Program in a
close by metropolis. Within the meantime, I assured him that he may name our Hotline
anytime, that we might be there for him.

This name was typical of the various we get from youngsters,whispering from
their dad and mom’ houses, confiding their blossoming sexual emotions and issues.
Our Hotline additionally receives calls from married males who cellphone from their places of work,
anxious about extramarital sexual encounters; homosexual males struggling unwanted effects
from drugs; moms caring for a sick baby or grieving for one misplaced to
AIDS; even well being care professionals themselves confused and requiring
burnout help.

One specific morning, I am struck by the variety of single ladies who
flip to our hotline for assist. At 10:15 a.m. a distraught younger lady calls,
explaining that she had been relationship somebody “very charismatic,” after a two-
yr interval of sexual abstinence.

“At first we used condoms and I used to be taking the capsule to keep away from being pregnant,” she
says. However after her associate assured her he was HIV-negative, the couple started
having unprotected intercourse. A number of months into the connection, she recounts, his
conduct grew to become “unpredictable,” till he lastly admitted he was sleeping with
different ladies and was hooked on heroin. Now she has to face up to the
“terror” of ready 3 months earlier than getting an HIV antibody take a look at. To assist her
cope, I give her the names of three terapists in her space. The decision lasts 43

At 11:15 a.m. I take a name from a girl who’s respiratory closely.
She says that 4 months earlier she’d had a quick affair with a limousine
driver, “not out of ardour, however as a result of I felt lonely. This was so completely not like
me,” she continues. “I come from a conventional Orthodox Jewish household…”
Though they used condoms, and she or he has since examined damaging for HIV, she
feels deeply ashamed, and has stopped seeing him. And since she has each
a persistent vaginal yeast an infection and a rash on her neck, she’s satisfied she
have to be contaminated by HIV.

Though rashes, excessive fever, swollen lymph glands, heavy evening sweats, sore
throat, or different flu-like signs could point out HIV, they will simply as simply
accompany the frequent chilly or flu, or different kind of an infection. I encourage her
to hunt medical assist and counseling, however the calls ends on a down word. “I
will need to have it [AIDS],” she moans. I am exasperated as a result of it does not sound
that approach to me, but I am unable to get by to her. The decision lasts 22 minutes.

It is 11.38 a.m. when a well-spoken lady, who says she’s an legal professional,
calls from her workplace, asking for the names of nameless testing websites. At first
very businesslike, she calmly takes down all the knowledge. I ask her why
she’s contemplating a take a look at. Complete silence. Then she begins to cry: “I….I am unable to
speak….I am sorry…you see, I’ve swollen lymph glands….[crying]….And my
physician needs to rule out HIV…I really feel overwhelmed…” Then, abruptly: “The place
can I ship a donation?” She thanks me and hurries off the cellphone after simply 3

These had been one-time callers, however, as in any epidemic, a component of panic
prevails, and our hotline additionally attracts a military of “continual” or repeat callers
who’re intensely fearful regardless of how benign their threat, many revealing
continued misconceptions and paranoia a couple of illness that may be successfully
prevented. We do our greatest to assist them, however typically they’re impervious to

Most poignant are calls we get from AIDS sufferers, phoning from their
hospital beds, trying to navigate the exhausting labyrinth of insurance coverage
and well being care issues. One man, in hospice care, stated he craved
companionship and missed the “good outdated days” when he was good-looking and

That decision was a tricky one for me as simply the day earlier than an in depth buddy of
mine, Joe, who had battled HIV for 16 years, had lastly succumbed. Though
on the finish Joe was a mere skeleton, he was nonetheless at peace. “I’ve carried out
what I needed to,” he informed me on our final go to. An avid gardener, he insisted
on a remaining journey to his nation home to see his backyard one final time. For a
second the caller’s actuality and the reminiscence of my deceased buddy blurred in
my thoughts and I used to be overcome. Time for a break.

Face to Face

Some of the and distinctive providers GMHC affords is known as “A-Group
Counseling,” a one-time, in-person session that is free and nameless.

Lately, I used to be on an A-Group counselling a 26-year-old HIV-infected
mom from the Midwest. She had traveled to Manhattan by bus to seek out her
estranged boyfriend, who, she recounted tearfully, had kidnapped her 7-year-
outdated son. Raveled, painfully skinny, the lady was a disturbing sight. She’s
realized that the 2 had already returned house the place the boyfriend was, and
the kid put in his grandmother’s custory. custody of his grandmother.
In the meantime she’d run out of cash for the return journey, been refused a mortgage by
her household, misplaced her ID, gone hungry and spent two nights on the road.

Fortuitously, this lady was registered at a neighborhood AIDS group in her
city. I telephoned her caseworker and persuaded him to purchase her a one-way
Greyhound bus ticket for $115.00. I additionally gave her subway tokens, a basket of
meals, juice and low. Smiling shyly, she thanked me for caring.

Shaking fingers goodbye with this lady was a bittersweet farewell. What
will occur to her? I puzzled will her well being deteriorate or enhance? Will she
achieve management of her life and be capable to present for her son? I am going to by no means know. One
factor I do know: She’d appeared with the sorrow of a troublesome life in her eyes,
however when she left, she was elated on the considered being reunited together with her
baby. Evidently with religion and a serving to hand, virtually something is feasible.
* * * * *

(This listing would in all probability be simplest when offered in a vertical chart,
the misperception on the left, the right reply on the appropriate.)

1)The AIDS virus might be transmitted by saliva, sweat, tears, urine or feces;
additionally by deep kissing.

1) HIV can ONLY be transmitted by 4 bodily fluids: blood, semen,
vaginal secretions and breast milk–and can be transmitted from a mom
to her baby earlier than beginning, throughout beginning, or whereas breast feeding. The alternate
of saliva by kissing is no-risk, until the saliva has blood in it and each
you and your associate are bleeding within the mouth concurrently.

2) HIV might also be transmitted by informal contact with an contaminated individual.

2) You may’t get contaminated from rest room seats, telephones or water fountains. The virus
cannot be transmitted within the air by sneezing or coughing. You may’t get
HIV from sharing utensils or meals or from touching, or hugging. HIV dies after
being uncovered to the air. Due to this fact, touching dried blood on a shaving blade, a
toothbrush or a rest room counter high is not any threat. In any case, unbroken pores and skin is
impermeable, like a rubber raincoat, and can’t soak up the virus whether or not it is
alive or lifeless.

Blood transfusions and medical procedures within the U.S. are secure. Giving blood is
utterly risk-free. The possibility of getting HIV from dentists or different well being
care suppliers is just too low even to measure.You may’t get it from mosquitoes or
different insect or animal bites.

3) Oral intercourse is simply as dangerous as vaginal or anal intercourse.

3) Though not 100% risk-free, oral intercourse is taken into account a low-risk
exercise,besides if: you may have bleeding gums, current dental work, open sores such
as a herpes lesion, any lower, blister, or burn within the mouth, or in case you’ve simply
brushed or flossed your enamel. Additionally, oral intercourse with an contaminated lady is riskier
if she is having her interval, since menstrual blood can include HIV. Total,
latex obstacles, (reminiscent of condoms or dental dams) used throughout oral intercourse cut back
the transmission of not simply HIV, however different sexual transmitted ailments.

4) Animal pores and skin, latex and polyurethane condoms are all equally efficient in
stopping HIV an infection and you should use ANY lubrication on the condom

4)Solely latex or polyurethane condoms could also be used, as HIV can move by
an animal pores and skin condom. With latex condoms, solely water-based lubricants–like
Ok-Y jelly or H-R jelly–may be used. No lubricants with oil, alcohol, or grease
are secure.Petroleum jelly,Vaseline, Crisco, mineral oil, child oil, therapeutic massage oil,
butter and most hand lotions can weaken the condom and trigger it to separate.
Nonetheless, with polyurethane condoms, petroleum-based lubricants might be

5) Ladies should depend on males utilizing condoms throughout intercourse to guard
themselves towards HIV.
5) Ladies could make use of the “feminine condom,” a plastic sheath that may be
inserted of their vaginas and used for cover towards HIV. It may be inserted
as much as 8 hours earlier than intercourse, has rings at each ends to carry it in place and might be
lubricated with oil-based lubricants that keep moist longer. As well as, ladies
can carry standard condoms for his or her male companions’ use.

6) If a girl is HIV-positive, her offspring will robotically be born contaminated
with HIV.
6) With no medical remedy taken, about 25% of HIV-positive ladies will
give beginning to infants who’re additionally contaminated. Nonetheless, the usage of anti-HIV
drugs has resulted in a major lower of mother-to-child
transmission of HIV in utero and through supply to lower than 5%. (NYT 10/19/

7) AIDS is basically a homosexual illness contracted by white males.
7) Latest information compiled by the Facilities for Illness Management and Prevention
point out that younger homosexual Hispanic and African-American males and heterosexual
ladies are the quickest rising phase of the inhabitants being contaminated with
HIV. Ladies now account for 43% of all HIV contaminated individuals over age 15. [NYT
11/24/98] African-American and Hispanic ladies account for greater than 76%
of AIDS instances amongst ladies within the U.S.

8) Heterosexual males aren’t actually in danger for contracting HIV, even when they
do not use condoms.
8) The within opening of the penis consists of highly-absorbent, sponge-
like mucous membrane tissues, which may present a route for HIV-infected
vaginal secretions or blood to enter the bloodstream. Correct condom use
protects males from an infection.

9) The AIDS epidemic is basically over as a result of new AIDS drugs like
protease inhibitors and others have turned AIDS right into a continual, not a terminal
9) Within the U.S., AIDS is the fifth main explanation for loss of life for individuals 25-44 years
outdated. Roughly half of all these contaminated with HIV within the U.S. aren’t receiving any
drugs or medical care. AIDS now kills extra individuals worldwide than any
different an infection, together with malaria and tuberculosis.[NYT 11/24/98] In 1998
alone, 2.5 million individuals died of AIDS worldwide. 13.9 million individuals have
died for the reason that virus was found in 1981.

10) Should you suppose you’ve got been uncovered to HIV by unprotected intercourse, you’ll be able to
take an HIV antibody take a look at 2 weeks later and get an correct outcome.

10) The usual “window” or ready interval stays a full 3 months. Nonetheless,
as a result of the widely-used HIV antibody assessments (The ELISA and Western Blot) have
turn into so delicate, about 95% of individuals will procure an correct outcome 4-6
weeks after a attainable publicity 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.]


“Mommy takes a variety of medication and Mommy’s actually drained generally and she or he
cannot take you to the park as a lot as she used to. It is not that I do not love
you…and that I do not wish to…however Uncle Jack’s going to take you to the park
as we speak.” –A mom residing with AIDS, a shopper at GMHC, speaking to her 6-year-
outdated son.

In New York Metropolis alone, 28,000 kids have been orphaned by AIDS for the reason that
epidemic started [NYT 12/13/98]

GMHC’s distinctive Youngster Life Program serves HIV-infected dad and mom and their
children–who could, or could not, be contaminated with the virus. “We assist households
strengthen their capacity to manage, relieve the stress of parenting with help
providers, and train dad and mom the way to speak to their children,” says Youngster Life Program
Coordinator Alison Ferst. “Sadly, ought to a father or mother or baby be sick
sufficient to be going through loss of life, we additionally assist them stroll by it with grace and
dignity—as against feeling alone, remoted and frightened.

“We additionally encourage sick dad and mom to make steady authorized plans for his or her
kids who could also be left behind,” provides Ferst, “and to have disclosure
conversations with the kids prematurely, so you do not have a baby standing
at her mom’s funeral, unsure the place she’s going subsequent.”

When an HIV-infected Mother arrives at GMHC to have lunch, attend a help
group, seek the advice of with a lawyer, or entry the acupuncture clinic, she will be able to go away
her kids in a spacious playroom, embellished with fanciful murals and a large
tree hand-painted by the famed kids’s story author and illustrator, Maurice
Sendak, who donated his artwork. [see photos] This system gives: child-
sitting, vitamin providers, a meals pantry, artwork and magic courses, and
leisure trips–church picnics, seasonal apple-pumpkin selecting,
amusement parks, zoos, museums, seashores. Additionally: homework assist periods,
vacation events, hospital visits, summer season sports activities and weekly help teams for
HIV- optimistic dad and mom and their HIV-negative kids.

This distinctive program additionally options: Cooking courses for youths who generally
put together meals for sick dad and mom; Pediatric Buddies, GMHC grownup volunteers who
play with sick kids and likewise help with household chores; Enjoyable With Emotions
Help Group, Friday Night Household Time, Birthday events, and a Vacation Reward

“Kids contaminated or affected by AIDS,” concludes Ferst, “wish to be like
different children: They wish to play with their buddies, wish to know that somebody
will all the time maintain them, wish to know they are not alone, and sometimes
marvel if it is their fault when Mother or Dad will get sick.” These kids want a
serving to hand and any of us can present one.

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