Stepping Back, Looking Forward
I have lived in Manhattan for 50 years. I was diagnosed with HIV in 1988, but I'm sure I was positive before then. During the first five years after my diagnosis I spent very little time thinking about HIV. I was healthy and had a good job and a fulfilling social life to keep me busy. I was doing administrative work at a job placement firm in the city and spent the majority of my time working or having fun.
When I was first diagnosed with HIV in 1988 at the age of 47, never in my wildest dreams did I expect to live past 48. As I grow older, HIV remains a top priority because of its virulent behavior. I always wonder how the disease will affect my life at the age of 70, 80, or even over 90. I also have to spend time thinking about the other issues that come with aging, such as affordable housing, access to health care, and, equally important, financial independence.
We all make decisions based on historical experiences -- so it's important to look back in order to move forward. From living with HIV through the decades, volunteering with an incredible spectrum of people, and my experience as a social worker, I have a prism of experiences to share.
Prior to being diagnosed, HIV and AIDS were like foreign words to me. I never would have imagined how personal they would become. I worked in the social service field, lived in a co-op with full amenities, and drove a company car. My life was filled with joy and happiness -- but that would change forever. Living with HIV brought new and unexpected health challenges, along with intense stigma and discrimination.
When I was first diagnosed in the summer of 1988, my life was turned upside down. I thought I was going to die instantly -- we all did. From 1988 to 1993 I lived in denial and isolation. Those five years were driven by drug and alcohol use, promiscuity, and other ill-conceived plans. Many nights I was scared that if I went to sleep, I would not wake up in the morning. I gave up on life, spent all my savings, and wouldn't tell anyone about my HIV status. There was so much stigma about having "The Big A" -- I felt like someone would beat me up if they found out.
Many of us were concerned about interacting with doctors because of the Tuskegee medical experiment. Many of the people with AIDS I knew feared they might be subjected to this same type of "treatment."It was also hard for me to overcome my fear of the medical establishment. Many of us were concerned about interacting with doctors because of the Tuskegee medical experiment. We were well aware of how the government-run project had denied treatment and information to black men used for syphilis research, up until 1972. Many of the people with AIDS I knew feared they might be subjected to this same type of "treatment."
Then, in 1993, I had a mild heart attack and found myself in the hospital. Everything changed. I met with a counselor who told me straight up, "Mr. Shaw, you have AIDS." I was petrified, but I took the bull by the horns and started asking questions. Though the process of building trust was slow at first, I can now say unequivocally that my reservations and fears of the medical establishment have disappeared. After all these years, I still have the same clinician. While we do not always agree, we work together to keep my T-cells high and my viral load undetectable, and so far we have managed to accomplish the task.
Living with HIV over the past twenty years has changed my life. The keys to my survival have been having support from my family and friends and staying politically active. Ever since I was asked to go to my first HIV meeting back in 1993, activism has become a constant and sustaining part of my life. I take advantage of every opportunity to provide workshops and presentations, engage politicians, and speak to the issues. I also make sure to have a laugh every now and then.
Although I overcame many of the all-too-prevalent obstacles and barriers, it was a long process. While sometimes the challenges can feel insurmountable, it is important not to give up. In order to live a long life with this virus, you also have to make the right choices. That means not doing drugs, not drinking, and not having unsafe sex. Every time I see someone on a risky path I say, "I've been there, done that," and I let that person know that there are other ways to lead a healthy, fulfilling life.
For those of us who have been living with HIV for decades, it is important to take some time to enjoy life. You have to find a range of new interests to replace the things you cannot do any more, either because of age or health.For those of us who have been living with HIV for decades, it is important to take some time to enjoy life. You have to find a range of new interests to replace the things you cannot do any more, either because of age or health. Go sit in the park, read the paper, play cards, treat yourself to a show. I play chess in the park every week, and have met many wonderful people there.
If you are new to the world of living with HIV, talk to someone. People call me Dr. Ed, because I am always on call, as are many other people who are ready and willing to offer support. Also, you cannot beat yourself up. Instead, reach out. There are many people and organizations dedicated to working with and for people living with HIV and AIDS.
The more you learn, the more you can accomplish. Education is the key to advocacy. Never stop learning. Wisdom is elusive; just when you think you know it all another challenge presents itself and the process of education starts all over again. When you commit to continuously learning, it helps you and everyone around you.
Notwithstanding all the successes, there are constant challenges, such as the new rates of infection. I hope that one day the city, the country, and the world will take an approach outside the box and not just stick to the status quo. We need to get people of all generations conversing with one another. If we open up the conversation in this way we can get rid of stigmas about the virus and increase shared knowledge about prevention. We must reach across the ethnic and age barriers to get everyone talking.
Want to read more articles in the Fall 2009 issue of Achieve? Click here.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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