||July 30, 2004
"A Burden of Silence" is a tender account of a daughter's devotion to her dying mother. It's the story of a sixty-six year old grandmother who developed AIDS from an HIV contaminated blood transfusion in 1983 while undergoing cardiac surgery. She was one of the first transfusion-acquired AIDS victims in the United States. She was also one of the very first women to be infected with HIV.
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The book reveals her self-imposed shame and fear of rejection. She kept her illness a secret, except for a handful of family members. This remarkable woman's voice is heard through the words of her daughter who became her advocate and confidant. The holistic techniques described in this riveting story will help anyone battling any disease. Humor videos, relaxation techniques, and meditation were tools used to provide solace and healing.
The moving account, which this brave woman urged her daughter to write, is a testament to the human spirit in the face of unspeakable circumstances. Draper weaves together the themes of strong mother-daughter bonds, the impact of caring hospice nurses, and the pain at masking a deadly illness. "A Burden of Silence: My Mother's Battle with AIDS" is also a call to action for the cause of AIDS awareness that humanizes this often dehumanizing disease.
The book questions why the government waited so long to respond to the AIDS epidemic, and attacks blood banks for not taking more responsibility in protecting the blood supply.
Draper keeps her mother's memory alive through the panel she made for the NAMES Project AIDS Memorial Quilt that travels throughout the world. The AIDS Quilt heightens awareness, and promotes compassion and acceptance of people living with HIV/AIDS. A powerful message is sent to all who read the words on the panel; "It hurts to know you suffered in silence."
"This has to remain a secret, Nancy,” my father whispers as he sits in our pine rocking chair with a somber expression on his face. My inner voice tells me he is about to reveal ominous
news. I have just come home from my yoga class and was surprised to see Dad’s car in our driveway so late in the evening. I am worried about my mother.
“What secret, Dad? Why are you here alone? Is Mom okay?” I ask nervously.
Mom had been released from the hospital three weeks ago with no concrete diagnosis from her doctors. They were baffled by her condition. For the past few years she had been suffering with fevers, night sweats, swollen glands, and a lingering cough. I suspect his news relates to her health.
Obviously distressed, he looks at my husband, Floyd and me as we sit on the couch waiting for him to reveal this secret.
“I’m sorry to visit so late, but Mom and I have been stressed all week waiting for the results of a blood test.”
“What kind of blood test?”
“Last Monday, Dr. Willet asked Mom’s permission to have her blood tested for HIV infection.”
“What? Why would he want her tested for HIV infection?”
After examining her medical records, he discovered Mom was transfused with four units of blood during her heart bypass surgery. They were traced to New York City where AIDS is becoming a raging epidemic. Dr. Willet is suspicious that she might have been infected with contaminated blood,” he explains as Floyd holds my hand in support. “He’s checking into it now. Mom and I were both hesitant to tell you sooner because we didn’t want you to worry,” he said, his voice quivering. “Mom was scared to take the HIV test, but she knew it was necessary to determine if she is HIV infected.”
I feel like a sledge hammer is slamming against my chest. Stunned by Dad’s words, I sip a drink of juice from the glass Floyd brings me to help calm me. As Dad continues to talk, I attempt to mask my fear. My throat is tense and my heart is racing as if I were running a marathon. I have to remain calm. I can’t upset Dad. He is grief-stricken and worried about the test results. If she is infected, he could be carrying the deadly virus himself. I’m sure he has already thought of that possibility.
“When will they notify her of the test results?” I ask anxiously.
“The doctor’s office should be calling any day now. We just sit by the phone and wait,” Dad replies as he continues to lean towards us, talking quietly, not wanting his grandsons who were upstairs to hear our conversation.
“Mom isn’t taking this very well, Nancy,” Dad says, clearly dazed and exhausted.
“Dr. Willet said it would take at least another week before we know for certain. If the ELISA test proves positive, they’ll perform the Western Blot test to confirm the diagnosis.”
The possibility that Mom could have been infected with HIV contaminated blood during her heart bypass operation in 1983 was horrifying. A sense of rage permeated my body. People who had been diagnosed as HIV eventually died from AIDS when their immune system could no longer fight off infections.
It had been five years since Mom had her surgery. Now, in September of 1988, doctors were questioning whether the blood she had received was infected with HIV.
“I don’t understand. I thought the blood banks were supposed to notify an individual if they might have been infected through a blood transfusion.”
Lonely Journey Through AIDS
"This is a devoted daughter's story of her elderly mother's painful and lonely journey through AIDS. Because her mother was not part of a so-called AIDS risk group, she felt ignored, rejected, stigmatized, and ashamed. For years, she suffered in excruciating silence. Nancy has given her mother's story a voice. There are lessons for everyone in this book--lessons about acceptance, compassion, and forgiveness."
-Ann Webster, Ph.D., director, HIV/AIDS Program, Mind/Body Institute, Boston, MA
Sad secret shared by a mother and daughter
Nancy Draper had to face one of the saddest things ever to happen; her dear mother was infected with AIDS through contaminated blood in a transfusion. This accidental infection led to a long and painful illness, but what was even more painful for the Drapers was the way in which her mother's illness was ultimately handled. Interestingly, well-known author Isaac Asimov also received a contaminated transfusion and it was years until his widow published a book about his last days. Some of his story is similar to Nancy Draper's experience with her mother.
The confusion of the 80's about the AIDS epidemic have repercussions even up to today. Back in that decade, GRIDS (gay-related immune disorder) was known in the medical community, but the threat to the public was not dealt with in a reasonable manner (was it stigmatized because an unpopular segment of the population had the disease? See "And the Band Played On.") Then the stigmatization of the disease preceded public health policy, and the lessons that had been learned in the 1900's about tuberculosis were apparently forgotten. (TB was also stigmatized and people were shunned with the disease until public policy established laws and santatoria to treat the ill and protect the public.) Meanwhile, people were becoming ill and dying. Nancy's mother faced the untruths, the stigmatization and the marginalization of her treatment.
Draper describes the family search for holistic care, for hospice help and how her mother's illness affected the family. In some ways, this information is helpful to anyone with a family member who has a terminal illness and is seeking the best and most appropriate care for their loved one.
As a personal history/biography of someone with AIDS, this is interesting reading. As a story of the deficiencies in our public health system, it's enlightening reading. It's not an easy book to read, but an important one.
The burden is lifting
For Nancy Draper, the daughter of the subject of Burden Of Silence, the burden was partially lifted when her mother passed away. Permission was at last given for Nancy to share the experience of a heartbreaking disease, with the intention of educating and enlightening her readers. This warmly written book takes one into the agony, as well as the overwhelming love of a family. It was very difficult for the Drapers to not be able to confide in anyone, not even their children, nor closest friends. This at a time when Nancy's heart was so heavy with fear and sadness, and her body so weary. It is not a 'downer' book, though it brings tears at times. Rather it is a walk in the footsteps of people who loved without reserve, and the happiness they drew from each other. The information on Aids is presented as a gift.
Susan LeGree -www.authortree.com/mizsam1844
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Reader Reviews for "A Burden of Silence: My Mother's Battle with AIDS"
|Reviewed by Nancy Draper
|Nancy Draper has written a moving account of her elderly mother’s battle with HIV/AIDS. The disease was diagnosed in 1988, the result of a blood transfusion given during cardiac surgery several years earlier. The title refers to the fact that her mother felt compelled to keep the diagnosis secret and suffered in silence because of the social stigmas associated with disease. During the earlier part of her illness, there are numerous examples of the pain and harm caused by insensitive health care professionals, which serve as lessons for those who work in palliative care. Thankfully, her mother finally received some proper palliative care during the terminal phase of her illness.
Director of Palliative Care, Austin Health, Melbourne, Australia