Readers remember the early years of AIDS

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.

Shock gave way to horror in those early days of AIDS as the country slowly realized what the cost of this epidemic might ultimately be. Nurses held the dying as they sobbed and knew "this was the worst disease the world has ever known."

Jerry from Los Angeles lost his partner and so many friends to AIDS that he can no longer bear to go to funerals. Still, he writes, "We cannot, must not, give up hope. Ever."

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.

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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

INTERACTIVE HIV/AIDS at 25: NBC News reports

In 1983, I left my marriage and came out of the closet. I had already met the person who was to be my current partner of 23 years. We live in the Midwest, so AIDS had just begun to infiltrate the gay community in 1983. My partner and I had ourselves tested, and were found to be negative. As we had already decided to commit to a monogamous relationship, we survived the decimation of our community. When I came out, there was a large group of gay male friends with which my partner and I associated. Over the rest of the '80s and into the '90s we watched as many of them passed away.

The ones who died early on created the most heart-wrenching times for us, because they were subjected to the worst kinds of fear and isolation, even by those who were supposed to be providing their medical care. Many doctors and nurses refused to give even the minimal comfort that was available at the time, and many family and friends denied giving their support and love, as well. We lost many beautiful friends. It remains a painful scar within our community.

— Bill, Ohio

My grandmother had open heart surgery in San Francisco in 1982. She died of AIDS in 1985. She suffered greatly was 58 years old when she died. The doctors were so afraid of a lawsuit, they wouldn't acknowledge the actual cause of death until the deadline passed where the family could take any legal action. I remember her throat was too sore to talk and she lost her sight near the end. The family suspected it was AIDS because the nurses and doctors didn't want to touch her. It affects more people than drug users and gay people.

— Sandy, St. Louis

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

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