November 29, 2002
GAY PEOPLE'S CHRONICLE 17
Yesterday's dream
The knowledge gained in almost two decades of surviving AIDS
by Dennis Gregory
Yesterday I had a dream. I dreamed it was 1981. Life was good. I was in a long-term relationship, had a great job making good money, and I lived high up on a hill with a panoramic view of one of the most exciting cities in the world, San Francisco. I was living the Gay American Dream.
Life was good, but suddenly and quietly the dream became a nightmare. I began see-
Life changes, and one has to be able to change along with it if one wants to survive.
ing fliers posted on buildings as I walked down the main drag, Castro Street. Later, news reports popped up everywhere about mysterious and frightening occurrences happening among the gay populations of San Francisco, New York and Los Angeles. Gay men in these cities were dying in large numbers from unexplainable cancers and pneumonias.
Slowly, panic overtook all sense of reality. Young men were dying in large numbers. The age of sexual freedom and innocence had come to an end. Fear, anger and hatred justified longstanding feelings about gay men. Suddenly, there was a belief that God had sent down a plague to wipe out the most undesirables in our society-gay men.
Not knowing where or how, or why this was all happening, all hell broke out. Gay men had become objects of fear and mistrust. We had become the deadly virus itself. Men were thrown out of their jobs, homes, families, even their own relationships simply for being gay and sexual beings.
To say that the level of fear, despair and hopelessness had reached unimaginable measures would have to be the understatement of the century. As the numbers of young men dying mounted, I witnessed incomparable, hysterical panic. I saw friends dying in the most horrible and ugly of ways. Many chose to take their own lives rather than die in such horrible ways.
My own partner, for unknown reasons, chose to go off and die all alone, without me by his side. Many died alone out of being shamed, guilty or abandoned. There are still no words, even today, to describe the sheer terror we all felt.
In November of 1984 I became HIV positive. I contracted pneumocystis pneumonia. I was given the usual three to six months to live and to get my affairs in order; I was preparing for the worst. In my first year of being HIV-positive I got pneumonia two times and was hospitalized several times. I had pneumocystis pneumonia six other times through the years. It's nothing short of a miracle for me to have survived this long.
In the span of three short years my life was completely altered. Before my diagnosis, I was running a successful business that permitted me a great income. I had traveled all over the country and even internationally. I never had to worry about where my next meal was coming from; I was able to do whatever, buy whatever, and go wherever I wanted with no regard for money.
When I got sick, all of that was taken away, to the point where I would wonder where my next meal was coming from. I went from having everything to having nothing. I
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lost my job, my home, my partner, and most of my friends. Even having to make the adjustment to be on disability was frightening, because I knew that the meager amount of social security would force me to learn to live in poverty. Would I be able to pay the rent? Feed myself? And before ADAP or Medicaid, there was no chance for me to even pay for the medications I would need to survive. It seemed there wasn't much reason to live.
Then AZT came out. This was supposed to be the miracle drug. We placed our hopes in AZT, thinking that this would be the cure for AIDS-only to witness people dying from the drug itself. Or living so uncomfortably from the side effects that many times they wished they were dead.
In January 1986, still very sick and wasting away, I decided to move back to Cleveland to be with my family. I could no longer take care of myself and I didn't want to die alone like so many of my friends. So I came home to die with my family. With the love, support and care of my family, I survivedbut life would never be the same. How does someone so young, at the top of his game, go from being a productive and active member of society to being inactive and unable to work and take care of himself?
Life changes and one has to be able to change along with it if one wants to survive.
I wanted to survive. So'l went from happy hour cocktails to drug cocktails. Taking twenty or more pills two times a day every day for the rest of my life is truly a test of wills. Pills to prevent future illness, pills to deal with all the side effects from those pills, and more pills to prevent the harms from those pills, like liver damage, kidney damage, diabetes, nerve damage, neuropathy, fatigue, weight loss. . . all along with nausea, diarrhea, weakness and extreme exhaustion on a daily basis.
Nowadays, the whole attitude toward AIDS and medications has changed. Because of the meds, people are now thinking, "Oh well, I'll just take the meds until they find a cure." People assume that people with AIDS are not dying anymore because of the medicines. This is not true, and in just the past couple of months I have seen numerous people die of AIDS, five of whom I knew.
Moreover, one big pet peeve I have about meds these days is the advertisements you see by the pharmaceutical companies. People with AIDS are pictured as rock climbers or bicyclists because they take all the meds. This is a disservice to the young community who no longer sees the images of people with AIDS wasting away or dying-reminding them that there is still no cure. And how many of us can climb a mountain anyway?
But having to take meds for rest of my life-imagine what that does to the mental state. It is a challenge, every single day, to sort through bottles of meds and figure out which times of day to take each, with what foods, with what liquids. Sometimes, I struggle with this reality-do I really want to take these pills for the rest of my life? Do I want to deal with these side effects? Do I want to take the risks because these pills are experimental, having lived so long and taken so many regimens and seeing the life span of these meds fail after a two-year period? Do I really want to put myself through this again? When do I say it is enough?
Add to this the feeling that society is not caring, but rather saying, "You deserve this fate." In fact, AIDS isn't really all that different than what it was in 1984. The government didn't care then, and for the most part, they don't care now.
What makes a survivor? Fortunately, I learned early on that in order to survive, I
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needed to keep my mind alert and my body active. I needed to feel like I was making a contribution in life-not just waiting to die. The ways that I have found to recreate myself started with support groups, seeing other people like myself, and hearing their stories on the things they did to survive. I then began volunteering, supporting others as well as helping out the agencies that were helping me. Though I can't say that I'm happy living with AIDS, or that it was the best thing that happened to me, I can say that it was a lifechanging experience. Because of AIDS, I have stronger and healthier relationships and appreciation for life.
What helps is having the feeling of being
needed-knowing that even living with AIDS, you can still make an impact on life and people can still appreciate you, knowing that you are not just a burden to society, learning about self-empowerment. Knowing that you have a voice that needs to be heard and the brains to figure that your word is worth something. Figuring out that if something doesn't work for you, you can create change for yourself.
I have learned how to be an advocate-not only for myself, but for others whose voices would not otherwise be heard. ✓
Dennis Gregory is a Cleveland-area AIDS activist.
Syringe exchange reduces HIV, other harm of drug use
by W. Martin Hiller
"The AIDS problem hasn't really hit the Cleveland area, but in discussing it with the expert health facilitators, we believe it will become a major issue in the next two or three years. We are now looking into ways of dealing with it.
..
-Gordon Friedman, president of the Free Clinic board of trustees, in 1987
Recognizing that a serious problem was looming on the horizon, the Free Clinic of Cleveland began planning an expansion of their HIV and AIDS services. Building on their anonymous and confidential testing program begun in 1986, the clinic established an outpatient treatment program, integrating medical care with mental health services.
By the mid-1990s, the Cleveland community was facing dramatic increases in the numbers of HIV and AIDS cases. In 1992, AIDS was the ninth leading cause of death among all residents, compared to 16th in 1987. Those who had contracted the disease through injecting drugs had increased from 144 in 1990 to 391 in December 1994.
Again, the Free Clinic responded. After a thorough discussion by the board of trustees, the clinic decided to move forward with a controversial syringe exchange prevention program despite the critics' claims that it would increase drug abuse. Planning for the program began in late 1994.
Declaring an AIDS emergency in January 1995, Cleveland Mayor Michael White announced an emergency health order sanctioning the existence of approved syringe exchange programs in the city. White said that since 1982, 1,557 city residents had been diagnosed with AIDS, 15% being IV drug users. According to White, reality necessitated doing more prevention. The Free Clinic's program, already well into the planning stages by that time, was operational by
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The Free Clinic`s Syringe Exchange Program uses a "harm reduction" model that encourages people engaging in potentially harmful behavior to modify their activities in the interest of their health and the well being of others. The policy is one-to-one: one clean syringe for one dirty syringe. It is a disease reduction or prevention action.
Three sites are made available for the exchange: the Free Clinic's facility at 12201 Euclid Avenue and two remote locations, on West 25th St. and at East 83rd and Cedar Ave., which are serviced by the syringe exchange van. Regular hours of operation also assist in the success of the program.
Two outreach workers staff the van. In addition to syringe exchange, the outreach workers also distribute condoms, provide HIV testing, and when asked, encourage patients to seek treatment for their addictions. They also provide STD prevention information and some limited medical screenings by a nurse practitioner.
Recent statistics indicate the success of the Free Clinic's Syringe Exchange Program. In fiscal year 2002, 88,172 syringes were exchanged, representing a 24% increase over the previous year. And, in October 2002, a record-setting 11,584 syringes were exchanged.
The biggest challenge is finding adequate funding sources. This is not a feel-good, we're-helping-people type of program. Unfortunately, the stigma surrounding drug addition and the misperception that such programs promote drug use masks the disease prevention benefits of a syringe exchange program. Until we dispel that perception, funding will remain a stumbling block.
For more information on the Free Clinic's Syringe Exchange Program, contact Lita Townsend at 216-721-4010, ext. 1448. ▼
Marty Hiller is the executive director of the Free Clinic of Greater Cleveland.
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