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Personal Perspective
Awakening a Giant

By J. Edward Shaw

Summer 2004

HIV remains an important part of my life for many reasons, but I'm always wondering how the disease impacts my natural aging process. True, HIV is still one of the top priorities in my life, along with essentials like financial independence. But as I grow older, other issues have equal importance -- did I do the best that I could have; did I leave something unfinished; will my legacy allow others to enjoy my labor?

When I was first diagnosed with HIV in 1988, never in my wildest dreams did I expect to be around sixteen years later. Early on, my sources of support were very fragile, due in part to five long years of ignorance and denial. My friends, associates, and even a few relatives were getting sick and dying. Getting services was the last thing on my mind. I was in a deep state of depression. Death seemed only weeks away.

Once I realized that I'd escaped death, I slowly began to access services, starting with medical care after overcoming my mistrust of the establishment. My next serious need was better housing, since I was living in an SRO (single room occupancy) at the time.

Since then, my support structure has changed dramatically. I've removed myself from certain people, places, and things and, through a multi-layered approach to AIDS advocacy, a new support structure now has a life of its own. When I awake in the morning, I celebrate life anew.

One challenge that remains constant is medical insurance. Fortunately, I qualify for the AIDS Drug Assistance Program (ADAP), which serves as a backup. To date, I've never had a problem accessing services because of my age.

When time permits, I find myself at a local senior center. I just can't adapt to that social setting, however, due in part to my high energy level. I am otherwise very comfortable with most types of services. After nearly sixteen years of living with this disease, I'm not fighting myself any longer, and my ability to adapt to various kinds of services has increased tremendously.

Over the past several years, I've overcome a multitude of challenges that have propelled me into advocacy and activism, including local and national speaking engagements. Knowledge is truly a powerful tool. Education is a key factor that has led to my participation in various forums. Participation in advocacy, prevention, and treatment/care planning bodies has laid the groundwork for me to present numerous workshops on such topics as "HIV and Older Adults." Some talks have included historical information, such as addressing many people's belief that HIV/AIDS is a form of biological warfare relating to the Tuskegee Syphilis Study. Other talks highlight socioeconomic factors like poverty, unemployment, underemployment, and other forms of institutionalized racism. As Rev. Dr. Martin Luther King, Jr. said, "We are not makers of history, we are made by history."

When I'm asked about my family, fond memories of my childhood come into my mind. But now both my parents have passed on and an older brother and younger sister have become estranged, maintaining only limited contact. Over the years, however, I have enjoyed many, many extended family members who serve as a sort of support structure.

When I'm asked about love, my response is "great." TERRIFIC in capital letters. Let me qualify that statement. I'm not currently involved in a romantic relationship. Not that opportunities haven't presented themselves -- quite the contrary.

Living with HIV/AIDS for sixteen years has changed my life dramatically. I'm indebted to my faith, the healthcare professionals, and all of the many wonderful people who have made my life full of growth. Asking questions and attending conferences and educational forums over the years have been the key to all that I've accomplished. "If you don't know, learn. If you do, teach." These words generated hope, opportunity, and a second chance for me. They rekindled a sleeping giant who now focuses on advocacy, activism, and social change.

J. Edward Shaw, 63, is a member of the National Association on HIV Over 50 and is Vice Chair of the New York Association on HIV Over Fifty. He is on the Board of Directors of the New York City Legal Action Center and serves as the Community Co-Chair of the New York State HIV Prevention Planning Group. He was appointed to the first New York City Commission on AIDS.

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