Being Alive; March 1992
Lori Levine

Way back when I found out my serostatus, Ryan White was being chased out of his home town, the Glasers were suffering in silence, and AIDS was a taboo subject among heterosexuals. "It was only a gay disease." People couldn't confide in their own families and friends about having this virus, let alone neighbors and co-workers, (especially if they were "healthy carriers," as we were called back then). It was the "dark secret" we carried around - I always compared it to being like Lestat's vampire!

Today, my employers not only know, but a condition of my accepting employment was that I use my own discretion about when I couldn't work, or needed time off for appointments. Dentists and GYNs aren't turning us away anymore and there are so many "HIV Specialists" in everything: Neurology, Psychology, Dermatology, Pharmacology, Gastroenterology, Gynecology. There are HIV Homeopaths, Osteopaths, Holistic Doctors, Oriental Medicine Doctors, and HIV Herbalists, Chiropractors, Spiritualists... There are herbs, vitamins, adjustments, acupuncture, massage, yoga, meditations, medications, teas, crystals, enemas, alternative treatments, and remedies for every HIV symptom imaginable. There are extremely busy Psychics who are booked months in advance to contact and communicate with the souls of our dearly departed. Business has increased for them in the last 10 years and their clientele is far younger than before...and we are still dying.

Years ago, the religious leaders shunned HIV+ people. We were made to feel we had sinned and we were getting what we deserved. We were turned away from our churches and synagogues, and other houses of worship. Today, an HIV+ individual can find spiritual and/or religious guidance and congregations for almost any religion that exists, and even some that don't! There are even combination religions for HIV+ people. There are Jewish Ministers (like Marianne Williamson) and Gay and Lesbian Priests and Rabbis who offer guidance and companionship, shelter, food and transportation...and we are still dying.

There are even dating services to help us meet others in the same situation so that we too can experience the joys and rewards of companionship. We aren't lepers anymore! There are so many more AIDS service organizations, and so many grants to support them (but all competing for the same funds). They provide permanent housing and temporary shelter, and food and insurance specialists, free legal advice, encounter groups, support groups, seminars, medical updates, and counseling, and small emergency donations of money and clothing, and social events, and advocacy...and we are still dying.

Years ago, the hospital facilities for AIDS patients were minimal and dismal at best. Today, they are like hotels. There are retreats where you can spend a week boosting your immune system to prolong your life, and when that doesn't work, you can attend seminars to help guide you into the transition from this world (otherwise known as death).

Public awareness and acceptance of HIV+ people has changed dramatically. Today, if you are in a hospice, you may even expect a visit from Princess Di. Or if you are a baby, Barbara Bush may even pick you up (if George is hot on the campaign trail). After Rock Hudson's death, his very famous and socially acceptable friend, Elizabeth Taylor, helped to increase public awareness of the disease, by vowing to make a difference - taking many of her celebrity friends with her on the road to fund raising. She helped make having this virus acceptable - and for this we thank her. There isn't a celebrity in town who won't attend a fund raiser and pitch in to help "those less fortunate than themselves"...and we are still dying.

President Bush has agreed to allocate more funds for research - hallelujah! What took him so long? I guess he hasn't been personally affected by this plague. He hasn't lost any loved ones yet. I wonder why - I've lost too many!

Opportunistic infections are becoming more treatable, but treatments have become too expensive, especially for a person who is living on SSI or SDI. Let's face it - it is called an opportunistic infection because the body has been so debilitated that it gives the infection the opportunity to take advantage. Most of the previously fatal OI's can now be treated so that we can live longer, only to be weakened by newer and stronger OI's...and we are still dying.

All we can really do is hang in there and wait for the miracle cure to come along and, in the meantime, help ourselves and help each other get through this.

This article is dedicated to five friends who died within the last two months: Russell Goodman, David Roller, Paul Holt, Tina Chow and Mike Lewis. I, and many others, will miss you all.
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