Wednesday, December 12, 2001/lk
The world can be a lonely place. Few people know that more than those who are living in the shadow of HIV (the human immunodeficiency virus, which causes AIDS), or have full-blown AIDS.
Lucinda Taylor, a licensed clinical social worker with Cascade Counseling, is trying to make it a little less lonely for such people here in the Hood River Valley and around the Mid-Columbia. She leads a weekly support group for those with HIV/AIDS. The group formed last summer as the extension of a similar support group that had evolved in the mid-1990s, but had disappeared over the last couple of years.
"With the new medications" that evolved in the mid- to late-1990s "there seemed to be a drop in interest," Taylor said. Though there is still no cure for HIV/AIDS, new medications -- the "cocktails" often referred to as antiretroviral therapy or combination therapy -- have allowed many with the virus to live longer and healthier lives. Attendance at the previous group sessions waned.
"It kind of went off the radar," Taylor said.
But by last summer Judy Cobb, a public health nurse at the Hood River County Health Department, began to see a need for an HIV/AIDS support group again. She eventually connected with Taylor, who was interested in facilitating the group, and the first meeting was held in August.
Cobb, who has been with the health department for 13 years, said that this year there has been an increase in the number of reported cases of people in Hood River County who have HIV or AIDS.
"It's kind of like a wave," Cobb explained. Eight to 10 years ago, she said, there were "quite a few people" in the county living with the virus who were seeking health care services and support.
"That group of people got services, moved out of the area or passed away," Cobb said. "Now we've got a whole new group of people who are here and need services."
One of those people is Richard. (The Hood River News agreed to identify group members only by their first name.) He moved to the Hood River Valley three-and-a-half years ago to be with his partner, and had been searching for a local support group.
"I felt I was really missing out," Richard, 50, said. "There's only so much support family and friends who don't have the disease can give. It's nice to share those day-to-day doubts and feelings with others who are going through the same thing."
Richard said that living with HIV in a rural community is "different," although not necessarily harder than it was in the large city he came from.
"In larger cities, there's a certain anonymity that you don't have here," he said. "I'm more reluctant to talk about my HIV status here."
That's one reason Taylor started the support group.
"It's much more isolating to be in a rural community," she said. "Most people don't have friends aside from the group who are diagnosed -- or are even gay, if that's a factor." She said one of the greatest benefits of the group is that it's a way for members to build a support system that may be entirely lacking in their lives.
People who have HIV/AIDS are not only facing the difficulties of living with the diagnosis but also a multitude of other challenges that accompany it, according to Taylor.
"There's a lot of depression that goes along with it," she said. Also, many people suffer side effects from their drug treatments -- ranging from nausea and diarrhea to fatigue, appetite loss and more. In addition, there's the "chronic grief" of multiple and ongoing losses, said Taylor.
"They've usually lost a number of friends from the disease. They lose physical abilities, independence, family and friends, jobs -- their whole sense of identity," she said. "It takes a lot of adjusting to be able to be mentally stable with all that (they're) faced with."
The support group at least offers a place -- often the only place -- where members can share these experiences with others. So far, there are six members of the group. Taylor hopes more people will join when meetings start up again in January. (The group is taking a break during the holidays.)
"I would estimate conservatively that there are between 30 and 50 people in the Gorge living with HIV/AIDS," Taylor said. Some of those are part of similar support groups in Portland.
"Some people are hesitant to even talk about it, much less join a group locally," she said. "But I want people to see this as a resource here that they can utilize and benefit from." She stressed that everything about the group is held in strict confidence. Group meetings themselves take place at undisclosed locations -- usually the home of a member.
Taylor provides some structure for the group, but bases it on input from group members. She begins the sessions with a 15-minute segment on educational topics -- most of which have been suggested by members -- ranging from medication issues to managing stress. Often, group members offer tips of their own; members might tell the group of a particularly good doctor they've found, or share methods they've found successful in coping with depression.
From there, Taylor checks in with each group member to see how they're doing -- both physically and mentally. Then the session opens up, focusing on whatever group members wish to talk about.
"It goes all over the place," Richard said, "depending on what's on people's minds, what are the pressing things taking up (our) mental energies."
Group members range in age from late 20s to 50s, according to Taylor. They also are in various stages of the disease.
Don, 48, has recently been battling back from a serious bout with pneumonia. Diagnosed with HIV in the late 1980s, he had been healthy up until last spring -- so healthy, in fact, that he quit taking his antiretroviral drugs. He landed in the hospital in March and has been in and out of a care facility ever since.
"I was stupid," he said. "I felt good, so I stopped taking my meds." He said he's "on the road back," but he now has full-blown AIDS. In addition to offering important support, he said the group sessions are "a good way to get information." He uses sessions to stress to others in the group the importance of staying with their drug regimens.
"That's why I'm where I am," he said. "It's critical."
While Don is facing AIDS, Richard, who tested positive for HIV in 1986, is dealing with a different challenge.
"After I was diagnosed," he said, "I spent 10 years mentally preparing for the day I was going to die." His health dramatically improved when he began taking the combination therapy several years ago, and he continues to enjoy good health.
"Now, I have to prepare to live," he said. "It's a different kind of mental challenge." The option of "living rather than dying" is much better, he added.
"But I was surprised at how much it threw me for a loop."
Taylor said she doesn't pretend to be an expert on HIV/AIDS, but rather offers her experience in mental health -- along with empathy -- to help group members deal with depression, anxiety and other issues related to living with HIV/AIDS.
"The group offers a place where (members) can be validated for what they're going through," she said.
For Don, the support group provides that and more.
"It's good to be in an environment once in a while where you can just let it all hang out," he said, "where you can talk about things that other people just can't relate to."