Nancy A Draper on Avert.org
Wednesday, August 26, 2009 7:36:00 PM
by Nancy A Draper
|Avert.org is a large AIDS informational organization in the United Kingdom and throughout the world. They invited me to write my story about my mother''s battle with AIDS.
One evening, I was surprised and concerned about my father’s late night visit to my house. He said he had something to share with my husband, Floyd and me. I suspected it was probably about my mother who had been ill for some time. Doctors were baffled by Mom’s condition. That night Dad said that Mom had been tested for HIV. Shocked and frightened, I tried to mask my fear as I didn’t want to upset Dad. He continued to explain that one of the doctors noticed in Mom’s medical records that she had a blood transfusion during her heart bypass operation in 1983. The doctor thought her symptoms of night sweats, swollen glands, cough, and unexplained fevers might be symptoms of HIV infection. The doctor asked her to be tested for HIV. Mom was scared, but realized she had to find out if she was infected with the AIDS virus. This was in 1988 - five years after her surgery. Dad told us that the final test results wouldn’t be in for another week. He also made it clear that if the test results came back positive we were not to tell anyone. This had to remain a secret.
A week later, I walked in the kitchen and noticed the fearful expression on Floyd’s face. The look on his face terrified me. He told me that Dad had called and told him the second HIV test had come back positive. No more wondering. Mom was infected with the AIDS virus. A New York City blood bank confirmed that one of the donors Mom had received blood from had AIDS. I was angry that the blood bank hadn’t contacted her at all. She could have easily infected my father. Thankfully, he wasn’t infected. Also, there was a great deal of fear and stigma surrounding HIV/AIDS in 1988.
A few minutes after Floyd told me the dreadful news, my son came down stairs to ask me a question about his homework. I had to pretend that everything was okay. But I was now living a nightmare! As soon as he left, I grabbed my coat and told Floyd I had to get out of the house. He was worried about me and drove me to an empty parking lot. I kicked the stones and kept crying, “NO, NO, this can’t be happening to Mom.” She was a 66-year-old grandmother – certainly an unlikely candidate for HIV infection. After an hour or so, I finally pulled myself together and we drove back home.
When Mom was told of her HIV infection she was totally devastated. She feared people would reject her if they knew about her illness. So my parents decided to keep it a secret. Only a handful of family members were told of Mom’s infection. My mother was fearful of having friends visit her. She felt she might be contagious, even though doctors reassured her otherwise.
My husband and I couldn’t even tell our two teenage sons. We were abiding by my parents’ wishes. Some of my close friends suspected something was wrong, but I couldn’t tell them that Mom was battling the AIDS virus. I hated pretending everything was okay.
Even though I felt torn apart inside, I realized that I had to find a way for Mom to cope with her HIV infection. She was suffering from insomnia and anxiety. She loved listening to me playing piano. So I recorded her favorite songs on my piano and made tapes for her. The music cassettes seemed to lull her to sleep. I also made a meditation tape in which she would visualize her thymus gland producing T cells to fight off opportunistic infections. Dad was amazed because he never thought Mom would agree to meditation. He said she would always have those earphones on her head listening to my tapes. I think this helped her feel she had some control over this vicious virus. The foot massages I gave Mom provided relaxation.
I still hid my emotions as best I could. It was difficult teaching piano and putting on a happy face when I knew my mother was dying of AIDS. Mom would often say, “I feel like a leper.” One day when I was giving her medication, I accidentally dropped a pill on the floor. I said, “Mom that pill is dirty. I’ll give you another one.” She hung her head and replied, “Nancy, it doesn’t matter. I’m already dirty. It hurt me to hear her say those words and to think of herself as unclean.
My husband was so very supportive, but the constant whispering was beginning to cause a strain in our marriage. Two years into Mom’s diagnosis, we finally told our two sons. They were saddened about their grandmother’s illness. Fortunately, they had learned about AIDS in their health class. I had also educated them at home. At least we didn’t have to whisper anymore. I still felt lonely and needed love and support from my friends.
Mom lost her battle with AIDS in 1991 at the age of 69. Two months before she died, she said, “Nancy, I don’t want anyone to know I have AIDS now. But after I’m gone, I want you to write about this disease that is killing me so others don’t have to suffer in silence like we have.” I honored Mom’s wishes and gave her a voice in my book, “A Burden of Silence: My Mother’s Battle with AIDS.” Mom was one of the very first women infected with HIV. She was my hero. In her last days, I would play the song, “The Wind Beneath My Wings.” I told her this would be our connecting song, and when it was played we would be together. Her chest seemed to heave with emotion. She died three days later.
A few weeks after my mother’s death, I desperately needed someone to share my burden with. I called a support group in my state. I spoke to a woman who told me how I could keep my mother’s memory alive. She told me about the AIDS Quilt and said that they would be having a display at Dartmouth College in Hanover, New Hampshire in 3 weeks. I didn’t know how I would get it done it time. I also wasn’t the seamstress Mom was. Yet I knew I would find a way to make a panel for Mom.
Since Dad still wanted to keep it a secret because he feared discrimination, I put the word “MOM” as her name instead of her real name which was Irene. I also put a heart on the panel with the words, “I MISS YOU.” I used some material from her clothing to use on the panel. I took some leaves from her skirt and put it on the heart. I also put two of her potholders to reflect her excellence in cooking. At the bottom of the panel, I put the words, “It hurts to know you suffered in silence.” This is the message I want people to see as the panel travels throughout the world.
I finished the panel just in time and my family and I brought it to Hanover, New Hampshire to be part of the larger AIDS Quilt. Each panel maker is asked to write a letter about the person they are remembering. I brought my letter that day.
The following letter was published by AVON books in “The NAMES Project Book of Letters.”
This panel I made is a lasting memorial in memory of my mother, who contracted AIDS through a blood transfusion. She suffered in silence because of the social stigma of AIDS.
Please don’t make these victims embarrassed and ashamed of their illness, but reach out in love and embrace them. When we begin to love, we can begin to heal one another.
My mother loved the ocean, palm trees and her beautiful flower garden. I have faith she is now in a gorgeous garden surrounded by the peace and love of God.
You were very brave, Mom, and it hurt me to see you suffer. You were a wonderful mother who taught me so much about life. I love you and I miss you, Mom.
I pray that people will become more compassionate and understanding of the tremendous hurt and loneliness these people and their families endure.
“A loving daughter from New England.”
Nancy, Maine, USA
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