Trenton Times, Trenton, NJ 
Copyright 1997: Trenton Times

October 20, 1997, page A13

Merrie Windley

It was in 1994 when I learned I had HIV. On that same day I lost my job and my home. All my friends left me. 

Before that devastating day, I had never even known anyone who had had HIV. I had never thought that it could happen to me. My fourteen-year-old son and I went to live in a welfare hotel.

I was overwhelmed. I wanted to die. In those early days, the only thing that kept me from cutting my wrists was the knowledge that it would be my son who would come home and find my body. I could not do that to him.

As I later reconstructed what had happened, I learned that I had become infected through a man with whom I had had a two-year relationship. He was a decent man with a decent job. Six months into the relationship we had stopped using condoms. He did not know then that he was HIV positive.

After I learned I had HIV, I asked more about his background and learned he had served a jail sentence for drug use and had been infected either through his own injecting drug use or through sex with another injecting drug user in prison. 

My son, Bill, born long before I became infected with the virus, is not HIV positive. But my diagnosis has been such a blow to him! He has not seen his father for ten years; my parents are gone; there are no aunts, uncles or cousins. I am the only consistent person in his whole world. As he says, "When you are gone, I will be alone." And I wonder too, who will be there for him.

Bill, a junior, still has a year and a half to go to finish high school. The pressure of my ill health and the massive insecurity of his future is getting to him. Before this year he got good grades and got along well in school. His teachers say he is changed. Right now he is an angry, angry young man. This summer his angry behavior brought him into court. Bill has a therapist now, and the therapist says Bill is having problems only because I am ill. 

I am so tired of being poor. I once owned my own business and was a professional tailor. At the time I found out I had HIV I worked as a home health aide. We now live on my social security disability check of $515 a month. Four years ago, asking somebody for a bag of food was something I never considered. Now we are in the line too. 

I don't quite understand what we are going through. HIV has nearly devastated my life. There have been many days when I have not felt at all well. Today is one of them. There is a lump underneath my jaw, and the pain starts in my jaw and goes through my ear and cheek. I will go to the doctor soon, to see what it is this time. 

I do not usually talk about the pain. I just go on. It is HIV. It is my life.

My son and I are trying very hard. I am a member of the NJ State HIV Prevention Community Planning Group, and I chair its Infected/Affected Committee. My son has started a teen group. The group is about learning life skills and avoiding HIV, alcohol, drugs, and tobacco. The group meets once a week and has about 20 members. I am their advisor.

Sometimes I still blame myself for my infection. And so do others. But there is more to it than that. I was in a committed, loving relationship with someone I trusted. I would have been safe in that relationship, if he had not been infected, either directly or indirectly, through a dirty needle.

I am a poor woman with AIDS. Some days I cry. Some days the pain of my illness is overwhelming. My son and I struggle to live in dignity with little money and no security. Our suffering serves no purpose. 

In AIDS policy, the message should be that human life is valuable and that others should be spared what Bill and I are suffering. And so with great conviction, tomorrow I am going to the Department of Health and Human Services in Trenton to join with others in the Mothers March for clean-needle programs and drug treatment on demand. I hope many will join us.

Merrie Windley is a member of the New Jersey State HIV Prevention Community Planning Group and chair of its Infection/Affected Committee. The Mothers' March for clean-needle programs took place Oct. 21, 1997.