by Harry E. Herzek
(Editor's Note: When I first met Harry Herzek a couple of years ago, he had just recovered from the most frightening medical crisis of his life. "No kidding," he told me, "I was really convinced, and so was everyone else, all the doctors, all the nurses, that I was going to die."
Thank God, the crisis abated, Harry survived, got on a new treatment regimen, took back his life, and became active once again in his community.
He has been thinking about writing for "The Braille Forum" for a while now. We are so glad he summoned the energy and the resolve and took keyboard in hand to send a message of realistic hope about HIV and AIDS for our readers.)
In recent months, I read two "Braille Forum" articles which were written by brave women who are survivors. One woman has survived a life-threatening cancer, and the other has fought and won a battle with addiction. I, too, have a story of survival to tell, and motivated by these women's honesty and courage, I have decided to share my own story of a struggle with HIV and AIDS.
During October 1988, my employer hosted a blood donation drive sponsored by the American Red Cross. When I discovered that employees who participated would be given two hours off, I got involved. Prior to consenting to having my blood drawn, I told the nurse about my gay lifestyle and urged her not to use my blood. A few weeks later, I received a letter from the American Red Cross, asking me to contact them about a very important matter. When I called, the Red Cross representative said that the matter couldn't be addressed over the phone, so I agreed to meet with him on my birthday, December 26, 1988.
At the meeting, I was informed that my blood had tested positive for HIV. A second blood test confirmed the result. I wasn't completely surprised.
In 1988, prior to the development of some of the protease inhibitors and other newer medication regimens, the majority of people diagnosed with full-blown HIV/AIDS weren't expected to live for very long. Once people received a positive diagnosis, there were few antiviral drugs available to fight off the opportunistic infections which attacked their weakened immune systems, and, often within just a few months, they died. At that time, there were few infectious disease specialists and other physicians engaged in research or caring for people with AIDS.
With very few viable medication options for patients, and a rapidly spreading progressive disease on the rise, the nation's health care system was in crisis. The relatively new drugs that were just beginning to be used hadn't been around long enough for people to learn about side effects or to investigate dosages, and managing side effects and symptoms was difficult at best. Today, many researchers believe that high dosages which were routinely prescribed back at the beginning of the epidemic may have actually caused toxicity and accelerated physical deterioration. To make matters worse, the whole topic of HIV and AIDS was shrouded in societal ignorance and an associated stigma against people who had the disease.
It was a scary time. Added to the circumstances of my diagnosis and poor health prognosis was my blindness. The health-care system could barely accommodate the needs and concerns of people with AIDS. Even printed information on the virus was limited, and finding someone who would respect my confidentiality was difficult. I didn't feel comfortable giving the available information about HIV to a blindness agency and asking them to braille it for me or to find someone who could read it aloud.
Sometimes chaos and crisis occurred simultaneously. As my December interview with the Red Cross representative concluded, I was asked if I would agree to share information about my blindness on a questionnaire. At that time, I thought I was probably the only visually impaired person in my city with AIDS, and I declined.
As time passed, I began to realize that I wasn't likely to experience symptoms for some time. I continued working at my job and stayed involved with the other activities of my life as normally as possible. Although things were difficult early in the AIDS epidemic, that time was also exciting. Efforts to sensitize and destigmatize the community were beginning. During the late 1980s, budget cutting and the conflicts over allocating public resources emerged. In Philadelphia where I live, non-violent actions, civil disobedience demonstrations and uprisings by AIDS activists at city council meetings were commonplace. It appeared to be one of those times where citizens and government were re-examining priorities. Lobbying for city, state and federal funds, as well as efforts to secure medical and legal protections mounted. I engaged in the struggle, almost getting arrested by Philly's finest.
Instead of ending up in jail, I became a person whom the Philadelphia media sought out when they needed quotes from an actual person infected with the virus.
Toward the end of 1989, I began a relationship that lasted until June 1994. Randy, my partner, had a full-blown case of AIDS, which resulted in his death from neurological complications. The virus attacked at his brain stem. With my own precarious health situation, and limited sight, I took care of his needs. Randy's father had become blind later in life, so Randy was someone who understood and was sensitive to the ramifications of my lack of sight. As Randy's illness progressed, so did his medication regimen, and the news about his medical condition worsened. Consoling him, caring for him, and attempting to address perplexing issues and questions about his care, and how to pay for it, intensified up to and after his death. His Medicaid benefits were frequently terminated without notice. My prior employment with the Pennsylvania Department of Public Welfare gave me some leverage as we confronted countless occasions when his medical benefits were denied. Frequent benefits terminations resulted in dangerous gaps in the continuity of his treatment and care. My attempts to contact elected officials for help or intervention were fruitless, and it wasn't easy to address these matters with family or friends.
After Randy's death, while dealing with loss and grief, I continued to try to learn as much as possible about HIV and AIDS. I became an active participant in local community advisory committee activities, hosted by area medical and social services organizations. I attended biannual conferences conducted by the American Foundation on AIDS Research. Not being well versed in technical or medical issues, I did my best to make use of the limited information about medical findings that was available to me. I found almost nothing in accessible formats, and when the American Foundation on AIDS Research was unwilling to make their materials available in alternative formats, I discontinued my involvement with the group. I found that some AIDS groups lacked any real consumer input and some actively discouraged people with HIV and AIDS from becoming involved. The result of this was that only formal agencies were acting as advocates for people living with AIDS.
Eventually, the physical and emotional stress took their toll on my mental and physical health, and in January 2001, I left my job. After three inpatient hospital stays, I finally decided to address my other physical ailments. During a meeting with an infectious disease doctor, I was encouraged to have my blood analyzed so that doctors could learn how much damage had already been done to my immune system and whether my body's defense system was strong enough to fight off opportunistic infections. The analysis showed that my viral load was extremely high, and my T-cell count very low, and I began to take an array of antiviral medications to prevent infections.
Today, I continue to request HIV/AIDS information in braille or other alternative formats. I have become a strong advocate for "language equity," which means that the medical system needs to present information in formats that are accessible by all individuals. I've had resource and service provider information brailled, and I use the New Mexico Fact Sheets to research medications and disease symptoms associated with HIV and AIDS. Unfortunately, the handouts which are distributed along with most pharmaceutical prescriptions aren't yet available in braille, and this is an important issue which I work with others to change.
I've also had to make changes to diet and lifestyle, to help manage medication side effects. During October 2002, I enrolled in the Americorps program at the Philadelphia AIDS Consortium as a volunteer team leader. I assist other Americorps volunteers by providing disability sensitivity trainings to help familiarize the workers with some of the issues and needs of people with disabilities. As a result of my work there, the Philadelphia AIDS Consortium funded my trip to Pittsburgh, so that I could attend the 2003 annual ACB convention.
Because of continued advances in medicine, and other emotional and social supports, my health has dramatically improved. I feel strong enough to jump back into life, now that I can see things from a different perspective. I've been with my present partner, who is not HIV-positive, since 1995. Our policy is to be entirely open and honest with one another, and to make every opportunity in life count.
If you have the virus, I hope by now you don't feel alone. If you're someone who knows someone with HIV or AIDS, I urge you to make sure they don't feel alone. I hope I have conveyed hope and encouragement by sharing my story. Coping with HIV and AIDS can be difficult, but I haven't given up the fight. Join me if you can.
You can contact Harry E. Herzek at the Philadelphia AIDS Consortium, 112 N. Broad Street, 11th floor, Philadelphia, PA 19103; phone (215) 988-9970.