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GAY PEOPLE'S CHRONICLE

September 18, 1992

Lesbian and living with HIV: One woman's experience

by Gary Hemphill

Terry still remembers quite vividly how it all began. Her hair began to fall out, and then rashes broke out on her hips. Then there was constant coughing and sneezing.

"Basically, I started to go downhill," she said, painfully reflecting on events of over a year ago.

Because of the symptoms, she was convinced to get tested for HIV. The results came back positive, changing her life for-

ever.

For those infected with HIV, the world can be a lonely place. For a lesbian, it can be especially so. "There's a feeling out there that this is a disease that's not a problem for women, especially lesbians," said Chrisse France, director of education at the Health Issues Taskforce.

The reality is that lesbians, and women in general, are at an earlier stage than gay males in the AIDS epidemic, but increasingly they are being infected.

"Lesbians have put up this wall," said Terry, who did not want the Chronicle to print her last name. "They say, 'I don't need to practice safer sex, and I don't need to worry that I'm HIV-positive because I'm a lesbian.' That's wrong. What about that one-night stand? What about that night I was really drunk at that party?''

Terry is pretty sure she was infected in 1982 or '83, and how she got infected doesn't matter much. Terry's message to anyone who has engaged in risky behavior: If you haven't done so already, get tested.

Terry is sitting in the living room of her West Side duplex. She relaxes on her sofa and sips on a Coke as she discusses how HIV has changed her life forever.

Her moods swing, she says. On some days, she is intent on pushing away friends,

only wanting to be left alone to eventually die. On most days, though, she still sees the positive aspects of life. She notices the sun shining and is convinced she still has reason to live.

She often reads passages from a book called The Color of Light, Meditations for All of Us Living with AIDSby Perry Tilleraas.

"There are a lot of clues in there," she said. "It helps to put things in perspective."

Terry says her circle of friends and family have been extraordinary. They have provided her with much-needed support. Support that she can't get from anywhere else.

There are many support groups in Cleveland, but none yet specifically for HIVinfected lesbians. The Living Room offers support groups that include women, so does the Health Issues Taskforce, but mostly they are attended by heterosexual women. The Taskforce offers prevention programs targeted to lesbians and an education program for women who are already infected with the virus.

Terry has little desire to meet with these support groups because she believes she would have little in common with the other members of the group except being infected. "If a lesbian support group were formed, I would go," she said.

Terry has received a lot of support from two women she has had relationships with prior to being tested. She is still close to both women but does not consider herself in a relationship with either.

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'A big part of me still wants everyone to get away from me. I don't want to be dating and I don't want to be in a relationship," she said. Despite that, these women have stuck with her and they remain very close. Mostly, Terry has retained her, sense of

The New Emmanuel: We've Got A New Attitude

We've changed. We're not the same Emmanuel MCC you knew in the '80s or for that matter the Emmanuel you knew last year. The community of faith has taken a new direction. One that places social-spiritual ministry in the forefront.

We're dedicated to meeting your needs--it's that simple! Emmanuel: Programming To Meet Your Needs Emmanuel Community Bowling Night October 4, 1992 at 5:00 p.m.

Ambassador West Bowling Lanes at 11901 Berea Road

Come join us in the fun. We understand that church may not be for all people. This isn't church -IT'S FUN! Come socialize with us and enjoy an afternoon of bowling with your friends at Emmanuel. Play for only $1.00 a game! Bring friends, chill and enjoy life.

Myers-Briggs Type Inventory

Date: To Be Announced

The Myers-Briggs is one of the most popular psychological instruments in use today. Using Carl Jung's theories, it begins with the assumption that because we don't understand the healthy and normal differences in the way people approach life, we often misunderstand each other and make inaccurate judgements about why others for what they do.

The MBTI will help you to get to know yourself better (couldn't we all use this?) and to better understand your lover, partner, spouse, the person you're dating, your boss, family, friends and others.

Stay Tuned For Further Information or call us at 651-0129.

The New Emmanuel MCC: Check Us Out.

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Sunday Morning Worship 10:45 a.m.

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humor. During a recent visit with her family, the discussion turned to everyone's cholesterol level. Most HIV-positive people tend to have very low cholesterol. After everyone disclosed their level, Terry announced hers--the lowest of anyone in the room. The room remained silent for a moment.

"Okay, I'm dying of AIDS, but I've got a damn good cholesterol level," she blurted out. The room broke up.

There are times Terry is angry, but her anger is not directed at the system. It is directed at herself.

"I've beat up on myself pretty good," she said. "I often say if you weren't screwing around this wouldn't have happened." Therapy has helped her deal with her anger, though.

In some ways, Terry considers herself fortunate. She manages to hold down a full time job as well as a part time job--a challenging schedule for anyone, but especially someone with AIDS. Her health benefits are extremely good, so she has been able to afford treatments of AZT and other drugs that prolong her life.

"That is one way I feel very alone. When I started on the AZT, they had no clue how it would affect me. All of the research has been geared toward males. That's kind of a bummer," she said.

Even the definition of AIDS as determined by the Centers for Disease Control (CDC) mentions symptoms more common to men. As if to underline Terry's point, just after this interview, women activists protested at the CDC to urge it to change its definition.

Because Terry has managed to continue working and has good health benefits, AIDS has yet to become a financial burden like it is for so many. But there have been other problems.

Finding a good primary care physician took some effort. Initially, she went through the Free Clinic because she was concerned about the confidentiality of her insurer. Then she went to one highly-recommended doctor, but she found him to be a "complete asshole." Now she has a doctor she is comfortable with.

'She gives control back to me. She talks to me like a human being and she explains to me exactly what is happening," said Terry.

There isn't a day that goes by that Terry does not reflect on her condition. There is

always something to remind her. It may be a cough, or it may be the medication she is required to take daily.

She must often force herself to eat because she says her appetite is shot. She doesn't drink alcohol or coffee and she has cut down on her smoking.

Terry looks healthy and fit. She is trim, but not underweight. That wasn't true last November when she got very sick and dropped 20 pounds. She felt at the time that she looked like she had AIDS.

"I thought what can I do? Bring on the Ho-Ho's. I gorged myself with chocolate.. Chocolate, vitamins and AZT. Yeah!"

All in all, she lives a much healthier lifestyle now than she ever has. She tries to eat the right foods and keeps her environment extremely clean.

Through all of this, she works to stay positive. When she takes her medication, she tells herself it will make her feel better and allow her to live a longer, fuller life.

Her outlook on life has changed, too. Terry recalls the movie The Doctor. In it, William Hurt and a companion who has a terminal illness are racing down the freeway. She asks him to pull the car over and stop. He thinks it's because she's sick, but she tells him its because life is rushing by much too fast.

"I can relate to that. I may only have a few years left. So let's just slow down and take it easy," Terry said.

Terry has made it a point to begin doing the things she has always wanted to do in her life, like travel. This summer, she went to Provincetown for the first time, and she is hoping to get to Key West before long.

"There's a lot of things I plan to do over the next several years," she said.. "Who knows. If I was healthy, I might have never done them."

The following HIV resources are available to lesbians:

Health Issues Taskforce, 621-0766 The Living Room, 522-1998 Free Medical Clinic of Greater Cleveland, 721-4010

Jane Miller LSW, of D.L. Dunkle & Associates, 229-2100

(Miller is also working to put together a support/therapy group for lesbians within the HIV spectrum.)

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