Being Alive - June, 1998
Brian Risley

It was suggested that what our groups do duplicates what other AIDS service organizations are doing, and that in this era so characterized by the easy catch phrase "the changing face of AIDS," such duplication is untenable.

Undeniably, there has been much progress in treatment and wellness. The countenance, if you will, of HIV/AIDS manifests itself differently for each individual, and such catch phrases discount one unchanging reality-that the emotional issues of people living with HIV/AIDS remain complex and not much different than they were.

An AIDS diagnosis is no longer a death sentence, but it carries with it the same fear of loss and dying. We know from recent L.A. County statistics that people are still sero-converting, and at an uncomfortable rate. These people are at a critical stage for intervention, in terms of emotional support and medical options needed.

Moreover, many people have been living longterm with the disease; this population has a whole set of unique issues-a compelling one being how to live or embrace life when one has planned on dying or has been told by one's doctor that he or she would die. Regretfully, some people are still dying from the complications of AIDS. So while other AIDS service organizations (ASOs) do offer emotional support groups, let me emphasize the unique character of Being Alive's groups. Duplication here is not an issue.

What is it that sets Being Alive's emotional support groups apart from other agencies? APLA, Shanti and the Gay & Lesbian Center offer good and viable groups. What makes our's different? The answer is in the details.

Our support groups are uniquely "drop-in" groups, able to meet unpredictable needs for emotional help, whether it be a person's very recent loss, a very recent HIV diagnosis or the advent of an opportunistic infection. Persons reaching out for help in these instances can come to us immediately. There is no waiting at Being Alive for a compassionate and safe place to go.

I certainly appreciate the referrals that we do get from other ASOs which cannot always accommodate their callers' immediate needs. We encourage members to make a commitment of three visits to a given group, so as to feel comfortable and fully participate. We don't require strict attendance, although many people do come back to their respective groups on a regular basis.

Our facilitators are well-trained and experienced as are those of the other organizations. We, however, don't use professional therapists who may engage in "fix-it" therapy, thus disabling the person from doing the work that might empower them. We follow a peer model of support, and subscribe to Shanti's maxim of providing a "safe, non-judgmental presence" in a room. We share the same professional guidelines and boundaries regarding confidentiality, safety and sex that other ASOs follow. However, we encourage our facilitators to be more individualistic and to bring their life experiences or issues into the group, when appropriate. They check their agendas at the door, but they have the freedom to be more proactive or to provide their recent information on treatments or clinical trials.

Being Alive also offers several types of groups that no one else does, including "When Meds Fail Support Group," for persons whose current antiviral therapies are not working. The numbers in this new group are growing larger as more people experience a humiliating backlash from doctors who don't truly comprehend treatment failure. Some of our group members complain of being made to feel that they have failed, even when they have adhered to their schedules, rather than that the treatment has failed them.

The "HIV-Negative Partners in Sero-Different Couples Group" is not unique in itself, but at Being Alive, we also have an "HIV-Negative Women in Sero-Different Couples Group," which also explores the issues of the primary caregiver. The weekly bereavement group "Coping with the Loss of a Loved One" is an open group, recently the only one in L.A., where someone who has recently lost a long-term partner or a loved one can share their grief with someone who is, say, nine months into the grief process.

New groups are forming that also have a unique character. We have started an HIV+ Buddhist group that promotes healing through meditation, chanting, Tibetan tea and emotional support. Our West Hollywood office at the Ron Stone Center hosts a Positive Sex Chat-a frank discussion of sexuality without judgment that lets us examine issues of safety, disclosure and drug use.

The May Newsletter contained two statements I wish to qualify. First: it was said that "certain of the remaining support groups are quite vital." It is necessary and true to state that every one of our eleven support groups are vital!

Second: the assertion that "our historical core activities of support groupshave declined to 10­20% of what they were two years and more ago" is unduly exaggerated. There has been a decline for every ASO, but certainly not that large. Many of the current groups we offer have good numbers and solid core attendance. My perspective-as a volunteer member for over two years, corroborated by several facilitators who have been members much longer-is that these numbers always fluctuate. If several long-standing groups are on hiatus, we do try to replace them with new groups that fulfill a need in our community.

Clearly there is a continuing need in the AIDS community for Being Alive's support groups, despite the fact that a majority of people on new treatments are doing well. The Positive 20s & 30s Drop-In Group averages twenty members on a weekly basis-last week there were twenty-five. The Valley Broad Spectrum Group averages ten members. Positively New for newly diagnosed persons averages eight to ten members per week and has several new members. The Bereavement Group has a current core of seven. When Meds Fail is growing in numbers, and attendance is healthy or growing for our other groups.

Being Alive's board members may redefine what niche we have in the HIV/AIDS community, and that is a good and valid endeavor. Meanwhile, those of us who facilitate and work with the emotional support groups at Being Alive will continue to refine what we do-to provide emotional support, dispense wisdom without being prescriptive and lead members either to the services our organization provides or to the services of another organization, if we don't offer them.

The next time someone tells me about the "changing face of HIV/AIDS", I will be compelled to remind them that PWAs and the community at large are still trying to process multiple loss, still grieving for a loved one, still living with the anxiety and uncertainty that meds may fail, still fearful about discrimination, still wrestling with survivor's guilt, still believing that-for the HIV-negative-sero-conversion seems inevitable, still feeling emotionally unsafe, even when practicing safe sex, and still wary of intimacy, whatever one's sero-status.

That Being Alive will continue to "be alive" is heartening, not only to the dedicated emotional support facilitators, but to the many and disparate people who benefit from this support. A lot has changed in our world of HIV/AIDS treatment, advocacy and care, but a lot has not. One thing about change that I've come to understand-change equals loss, even if it's for the better-and that is why we will always be there to provide emotional support.

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Copyright © 1998 - Being Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069 TEL: 310.289.2551; FAX: 310.289.9866; Email: BeiAlive@aol.com  http://www.beingalivela.org/