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.

Hansens Lepresy

Since the beginning of time, Hansen’s disease has been recognized as a problem. Reported in Egypt in as early as 1350 BC, Lepresy is the oldest disease known to man; this is according to the Guinness World Records. Frequently, Lepers have lived outside of society. This is partly due to the fact that for a long time the disease was believed to have been caused by a divine, often times associated with demons, curse or punishment. This idea changed in the middle ages, when people started to believe that lepers are loved by God, and that it is humans that have cursed them

Another reason for secluding the Lepers what that in the past it was believed that leprosy was highly contagious. If was even taken to the extent that leprosy could be spread by the glance of a leper or an unseen leper standing upwind of healthy people. Today we know that the disease is much less contagious than we once believed in the past. Lepresy is caused by a mycobacterium that will multiply at a very slow rate. The disease mainly affects the skin, nerves, and mucous membranes. The organism has never been grown in cell culture, because of the difficulty that is involved with doing so. This difficulty is as a result of the fact that the organism is an obligate intra-cellular parasite. This means that it lacks many necessary genes for independent survival. This is also evident and provides proof for it having such a slow rate of replication.

Uncertain today, is the method of   transmission  of Hansen’s disease. Many people believe that it is spread person to person in respiratory droplets. What we do know though, is that most of the population is naturally immune to the disease. The disease is chronic, and often times patients are classified as having paucibacillary, which is a form of multibacillary Hansen’s disease.

Researching the Pros and Cons of Getting Your Degree Online

Are you considering getting your bachelor’s or master’s or other degree online? It’s a growing field that’s receiving acceptance and approval for all types of career and education goals.

The biggest advantage to online degree education is that it’s a complete college degree program that is delivered via the Internet. All classes, materials, tests and lectures are delivered online. This process allows the student to “attend” class from anywhere at any time that is convenient to them.

According to educators from Cornell University, “the web provides significant new functionality in transmitting information to the student and providing forums for exchange. The web is revolutionizing some areas of study through increased opportunities for learning and alternative formats for information.” (Dwyer, Barbieri, and Doerr, 1995).

One of the ways it has done this is through enhanced student-to-student and faculty-to-student communication. Students and faculty can both benefit from using the communication and assessment tools that are made available via online learning.

The technology also enables students to exercise more flexibility in their approach to education, depending on what best suits their personal learning styles and busy schedules.

In addition, the class material and program is continuously updated for up to the minute, real world application. This allows the student to immediately begin applying their new knowledge to their existing work environment.

There are many different types of programs available. Students can receive a bachelor’s or master’s degree in many areas such as accounting, marketing, human resources, e-business, information technology, nursing and even elementary education.

The typical online program takes three years to complete. A master’s degree program may take up to four years depending on the type of degree sought and the prior education of the student.

Most programs are accredited and they usually accept the transfer of prior credits from other accredited universities. Some of them are also well-known off-line schools such as Duke, Stanford, Jones International, and Capella.

While enrolled, a student typically takes just one class at a time for a five to six week period. This allows the student to concentrate solely on that material before moving on to the next module of information.

The price of an online degree education program is comparable to that of a regular college degree. Plus, many students are eligible for financing in the way of a student loan. Sometimes employer education programs can even reimburse a student’s tuition fees.

Keep in mind though, that you may have to be a little more organized and self-motivated for this type of education and you will have to manage time demands in other areas of your life. Because you normally won’t have set class times, it will be up to you to the time into your schedule. Then again, some programs require that you log on to the Internet at designated times for virtual class sessions.

Another potential disadvantage is that some employers still prefer that their employees have degrees from traditional colleges. However, these views are rapidly changing.

A recent survey of 1,300 graduates and 80 employers asked supervisors to rate the value of the degree earned by their employee compared to a resident school degree in the same field. Sixty-nine percent of the supervisors rated the online degree “just as valuable” or “more valuable” than traditional degrees. This means that one out of three supervisors need to be convinced that an online degree offers the same quality and content as a traditional degree.

Plus, traditional brick and mortar universities who offer online courses often make no separation between their programs and the type of degree awarded. And transcripts do not indicate whether a course was done at a distance or on campus.