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The Storm |
Chapter 8: Hope
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The Storm |
Chapter 8: Hope
Sarah
came in the next week seething. "I went to the session with Sam,
and I know I got it from him! I just know it! When the counselor
started talking about HIV, Sam again started all that homophobic stuff,
then he got up and started to leave. The counselor stopped him by
asking what his story was. He got real embarrassed, then said a lot
of men who have sex with men aren't gay. Then he left! He just
walked out and I haven't seen or heard from him since. I just know
he gave me HIV."
| In fact, Sarah doesn't know
she got it from Sam. She may never know the source of her exposure.
Any of her former lovers might have exposed her, having themselves been
exposed through sexual contact, either hetero- or homosexual, through drug
use, or through blood products. Sam's reaction was telling, however.
There are many people who have sex with partners of the same gender who
do not identify themselves as gay, lesbian or bisexual. If you are
interviewing someone, or assessing HIV risk factors, it is important to
ask very specifically about sexual partners.
I also had to assess the Tarasoff implications here, as Sarah had said earlier that if she ever found out who infected her she would kill him. In the session, we explored her feelings of rage and betrayal. She realized that she did not know with certainty that Sam had infected her. She also didn't know really whether any of her lovers had used IV drugs, received blood transfusions, been sexually assaulted or been exposed to HIV in their earlier relationships. Sarah said that while she felt like killing Sam, that of course, she would not. |
Sarah's two previous partners, Joe and Alan, were notified by the counselor at the clinic that they might have been exposed to HIV. The source of their possible exposure, the time and location, would not be disclosed to them. We discussed a bit how painful it must be to receive that kind of call. Sarah felt badly they would hear it from a stranger, but realized her reserves were too low to meet with either man at this point.
Sarah got the wonderful news that Rebecca was not HIV+ from the pediatrician, who continued to encourage Sarah to take care of herself.
She
met with Stan, her ex-husband, on her own, afraid that he would react like
Sam had done. "I told him, and he was so concerned. He actually
started to cry; he was crying for me." Sarah was able to tell
him that Rebecca did not have HIV and expressed her fears that he would
go for full custody of their daughter. Stan reassured her that the
custody arrangements would not change. He actively encouraged Sarah
to be proactive in getting medical treatment and offered to go on the Internet
to find resources for her. Stan said he did not need an HIV test
as he has been tested recently at the request of a woman he was dating.
The test was negative, but he said he was so nervous that he vowed to have
"no wet sex" (exchanging bodily fluids) with anyone unless they both tested
negative initially, then 6 months later, and then only if they were both
monogamous.
Stan introduced
Sarah to a website called 
THE
BODY: An AIDS and HIV Information Resource. Sarah read:
Squaring off against HIV means preparing for the battle of your life. There are several steps you can take right now to fight this disease and live better in the process. They include:Sarah also learned from this website that "Women are one of the fastest-growing groups diagnosed with AIDS. Women now constitute 20% of all newly-reported AIDS cases in the U.S. and 42% of cases worldwide --nearly triple the number ten years ago. In the developed world, women are about eight times more likely to become infected from an infected man than the other way around, and thus are very vulnerable to HIV infection." She said she felt less alone when she read that.
- Taking charge of your own life and health;
- Finding the right doctor and learning to work together effectively;
- Exploring the range of treatments;
- Deciding whether, when, and how to tell others; and
- Learning to live with HIV (emphasis on living).
From
This site also offers Internet support
groups which they call
COMMUNITIES with discussion threads including:
Living with HIV -- General
Gay Men
Women
Health Care Workers
Teens
HIV/AIDS in the Military
En Espanol
Sarah and Stan starting more active 'co-parenting' as a result of their conversations around Sarah's diagnosis. They both made wills, and began to talk about 'disclosure', which is what, when, and how they would tell Rebecca about Sarah's HIV status.
Together they met with Rebecca's pediatrician, who suggested that they wait for Rebecca's questions and then answer only was she was asking. He reminded them that children have different levels of understanding at each developmental level, and for Rebecca to hear now, when Sarah was asymptomatic, that her mom was ill, would be very confusing. He also said that children are egocentric, which is necessary for development, and that Rebecca might blame herself for Sarah's illness. "Wait", he counseled, "and hope that by the time she needs to know, that there is a cure." He did say that when Rebecca was an adolescent to emphasize abstinence and sex education. He said there was a lot of information available now for teenagers. He makes sure all the adolescents in his practice are aware of HIV and how it is transmitted. "With teenagers, you can't really wait for them to ask because by then it might be too late."
Sarah
had less success with her parents. Her father and mother both blamed
her and kept reminding her that they had never approved of her divorcing
Stan. (They seemed to conveniently forget how much they had opposed her
marrying Stan as well). They needed to be educated about the transmission
of HIV, a fact which Sarah realized when she visited them and they sprayed
every surface that she touched with Lysol.
| I was remembering my client George
and his parents' reaction to his AIDS diagnosis. George was gay and
had never come out to his Southern Baptist parents. When it was clear
that he was very ill, he contacted them to let them know he had AIDS and
was dying. His father went into a rage and never spoke with
him again. His mother flew out to his side and was holding him when
he died. She later helped his lover make a square for the AIDS
Memorial Quilt by contributing some photographs of George as a boy. |
Sarah was distressed by her parents' reaction, but got a lot of assistance from the support group she joined at the clinic whose specialty was HIV and AIDS. She chose to join a women's group because initially she was too angry with men to attend a mixed group.
Sarah
was very pleased with the medical care she was receiving at the clinic.
She never returned to Dr. Marten, the ob-gyn who had first suspected that
Sarah was HIV+. It is beyond the scope of this course to discuss her medications
as this field is rapidly evolving. She would talk about her T cell
count (for medical terms, go to the Glossary of the JAMA
HIV/AIDS Information Center). The fewer
T cells in a count the more likely a person will develop opportunistic
infections or malignancies. A T cell count of 200 cells or
less per cubic millimeter of blood is a diagnostic criteria for AIDS.
There are currently 26 opportunistic infections and malignancies, which
combined with the presence of HIV, meet the criteria for AIDS. These
are called "AIDS indicator illnesses" by the Center
for Disease Control and Prevention.
At
the clinic, Sarah began treatment with newly developed drugs for HIV, combined
with stress reduction and nutritional counseling. On her own she
explored alternative medicine, including homeopathic treatment and work
with a naturopathic physician. She has remained quite healthy, after
a scare in which she developed a sudden respiratory illness. She
panicked and it was only after most of Rebecca's first grade classmates
also got sick that she realized it was one of those viruses that spread
like wildfire throughout schools. Sarah had a quick recovery, but
the incident made her realize how vulnerable she feels about her health.
She has had some unpleasant side effects from the medicine she is taking
and her support group has been very helpful with sharing their own experiences
and suggestions.
| I remembered Mike's journey
with AIDS. After the first bout of pneumocystis
carinii pneumonia (PCP), the sores on his skin (KS, Kaposi's Sarcoma) continued
to spread. Mike had many more hospitalizations as one opportunistic
infection after another attacked his ravaged immune system. He lost
an alarming amount of weight: over 100 pounds. His month was covered
in fungal infections. He had numerous fevers and went blind.
He developed AIDS Dementia Complex. He died held by his mother and
his lover.
Today, there are fewer deaths in America like Mike's, as new medicines are developed. I am so grateful that the 10 years between Mike's death and Sarah's diagnosis have brought so much hope and healing to people with HIV and AIDS. I continue to wish for an end to this disease, not only in industrialized nations, but throughout the world. I wish that no one ever again has to die like Mike died. |
Sarah had
not told her co-workers about her HIV status because she was frightened of being
stigmatized or fired. Through her support group, she became aware that
people with HIV/AIDS are often discriminated against in employment, housing,
access to health care, etc. (For more information, the ACLU has an HIV/AIDS
website. Another resource is an on-line
manual written by the AIDS Legal Referral Panel of the San Francisco Bay Area
.)
| As therapists, it is beyond the scope of our practice to offer legal or medical advice. But it can be very helpful to our clients when we are familiar enough with the issues and available resources to make appropriate referrals. |
One year after her diagnosis Sarah had not yet begun dating. She felt it was too soon for her, and that she was still grieving what she lost. "I'm not ready, and I may never be ready. I don't know. The funny thing is, I am seeing how before I would just jump into relationships. Now I see the type of guy I used to be with, and I can't imagine being with someone like that. So the paradox is that having HIV has slowed me down. At first I thought looking death in the face would make me feel like living fully, taking big bites out of life. Instead, I am living fully, but in a quiet, inner way."
Sarah
began to volunteer at an HIV/AIDS hotline and was able to be compassionate
with men as well as women. She said "We're special, we who have HIV
and AIDS. It doesn't matter to me anymore how someone got it, through
sex or drugs or blood...the fact is, we are all in it together. We
share the same experience, and have the same hopes and dreams. And
nobody on this planet gets off alive. It is just that some of us
have to look at it sooner. And maybe we're wiser, and maybe not,
but judging and being judged doesn't help."
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