Readers remember the early years of AIDS

Those touched by the virus share memories of the struggle and the stigma

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Behind every AIDS death is a story. Behind each statistic is a person who is loved, who was someone's brother, mother, father, sister, aunt, uncle, friend, grandparent or lover.

On the 25th anniversary of AIDS, readers share their memories. Some have survived being HIV positive for decades and recall the fear born of ignorance by those around them.

Others are left to remember those who died, from young men taken by a disease then called GRID (Gay Related Immune Deficiency) to a 58-year-old grandmother who died following heart surgery, to a daughter wondering what life might have been like if her father had lived to see her into adulthood...

Here are their memories, in their words:

This is my 25th year living with HIV/AIDS. Those early years were like living in a one-man concentration camp, with my own body as the jailer and executioner. I have held 16 men in my arms as they took their last breaths, I have been told six times that I would not live 6 months.

How do I put into words the devastation that this pandemic has racked through my life? I have been through all of the regimes of medicine, sometimes the treatment was much worse than the disease. Many of my friends have come to say goodbye to me several times. Yet I'm still alive and live well today. I have literally had to change every thought I've ever had about everything to survive. There is not enough space here to share all that HIV/AIDS has brought into my life, from the deepest grief and depression to the highest expression of my personal faith.

— Everett, Santa Monica, Calif.

As a nurse, AIDS has had a huge impact on my life. During the early years, I lost a lot of patients. I was terrified of the disease, the unknown. Over the years, I went to AIDS conferences and got a lot of education about the disease. I became an AIDS counselor and realized just how devastating and horrible this disease is.

A few years ago, a patient I had counseled who was HIV positive came into my office, shut the door and sobbed like a baby. He couldn't breathe well and he was afraid. All of a sudden, as I held him, I realized this was the worst disease the world has ever known. He has since died.

— Trunell, Amarillo, Texas

My dad was a hemophiliac who contracted HIV/AIDS through the blood products that he used to stop his bleeding. He was devastated. At that time, it was a death sentence. When he disclosed it to his co-workers he was treated like a leper. Our neighbor was so afraid of him, she had to get counseling. (She made sure to let us know this.) She came over to our house one time, stating it was an assignment from her therapist to "confront her fear," and asked me to hug and kiss my dad in front of her to prove I wasn't afraid of him. I was so angry at her and others in our community for prioritizing their fears without trying to understand our fears. My dad lived with HIV/AIDS for 12 years, and his mission was to educate people that they needn't be afraid of him. In fact, he was more afraid of them — afraid of catching colds or infections from them that could literally kill him. He passed away in 1998.

— TJ

My mother was a nurse at an Alameda County (Calif.) Hospital that had an AIDS ward in the early '80s. I was 12 when I met an AIDS patient. He came up from behind me and said, "excuse me" in a deep voice, when I turned around, I saw a very tall skeleton. This prompted a series of very open discussions on AIDS (some were still calling it GRID) and safe-sex practices. My mother told me way back then that not only gay people get AIDS like everyone was saying, that AIDS is in the blood, so anyone can get it.

Soon after, the first heterosexual came to the AIDS ward, she was a wife and a mother. The AIDS infected her brain or nervous system, something like that, and I remembering talking to her once. She kind of broke down, crying and telling me about her regrets. It was very sad and a lot for 12 or 13-year-old to take in. However, these experiences and my mothers openness insured my condom use throughout my teen years and early 20s up until I got married.

— Rick, Sisseton, S.D.

I remember the fear. My beloved cousin had come out of the closet and moved to Houston, where he contracted AIDS. At his funeral, there was a beautiful black man with blue eyes standing in the foyer with tears dripping down his face. I introduced myself and asked if he was all right. His reply? "I'm just so tired of going to funerals." I understood, a little better anyway, of the personal toll this damned disease takes on everyone who has a soul.

— Claire, Beeville, Texas

When I was 13 years old, in 1993, my father died of AIDS. This year I have lived 13 years of my life without him. I often wonder what my relationship with him would be like now, as an adult, but the memories from my childhood years with him are good ones. I told him before he died that I thought he was the bravest man I would ever know because of what he suffered. He still is.

— Lindsay
(more testimonies available in the full article)