A Burden of Silence: My Mother's Battle with AIDS [Paperback]

Nancy A. Draper (Author)

Editorial Reviews

Review

"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 the 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." Roger Woodruff, M.D. (Director of Palliative Care, Austin Health, Melbourne, Australia) --International Association for Hospice & Palliative Care

"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

Nancy Draper has written a tender account of a daughter's devotion to her dying mother. This story, about a grandmother who developed AIDS from a contaminated blood transfusion, will inspire admiration for Ms. Draper's courage and persistence. It will also inspire rage against the blood banks that failed to screen blood donations adequately." --Ann Pozen, Psy.D., president, National Association for Victims of Transfusion-Acquired AIDS, Inc., Bethesda, MD

"Nancy Draper's mother told her, 'I want you to write about me having AIDS because I don't want anyone else to suffer in silence like we have.' Nancy's mother must be very proud of her and this account of three years of fear, heartache, some good days and always deep love." --Father Pat McCloskey, O.F.M., Editor, "St. Anthony Messenger"

From the Back Cover

"A Burden of Silence: My Mother's Battle with AIDS" is a heartwarming story of an affectionate bond between a daughter and her elderly mother. It will evoke emotions of faith, inspiration, anger, and love. Anyone going through an illness will benefit from the holistic techniques described in this book.

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Product Details

• Paperback: 156 pages
• Publisher: AuthorHouse (July 28, 2004)
• Language: English
• ISBN-10: 141845107X
• ISBN-13: 978-1418451073
• Product Dimensions: 8.8 x 5.9 x 0.5 inches
• Shipping Weight: 9.6 ounces (View shipping rates and policies)
• Average Customer Review: 4.9 out of 5 stars  See all reviews (40 customer reviews)
• Amazon Best Sellers Rank: #1,641,251 in Books (See Top 100 in Books)

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36 of 36 people found the following review helpful:

5.0 out of 5 stars A Caring Daughter Tells The Blunt Truth About AIDS, March 2, 2005

By 

William Hare (Seattle, Washington) - See all my reviews
(REAL NAME)   

This review is from: A Burden of Silence: My Mother's Battle with AIDS (Paperback)

Nancy Draper was enjoying her life as a busy wife and mother in New Hampshire when she was hit with a tremendous jolt. She was shocked to learn that her mother, a vital woman in her sixties, had been infected with the AIDS virus. She provides a compelling account of her experiences in dealing with AIDS along with those of her mother in "A Burden of Silence: My Mother's Battle with AIDS".

Nancy's mother had received blood from a contaminated pool from New York City while receiving a blood transfusion. Those with knowledge of this tragedy failed to pass along word. Tragically, certain individuals in authority placed a premium on protecting themselves and not providing vital information to family members, beginning with Nancy's father.

Having been dealt this terrible blow, Nancy Draper summoned all the courage and energy at her disposal to help her mother through her travail. A former teacher and current piano instructor, Nancy plainly likes people and has an essentially optimistic viewpoint which shows through in her writing. She was therefore stunned to observe that so many with whom she dealt in the health care field, rather than displaying the type of caring compassion toward Nancy's mother that her situation warranted, instead sadly operated at a cold distance.

When Nancy sought answers on how to ease her mother's painful burden she sometimes received more of a shrug than helpful assistance. Incredibly, in one instance when she took her mother to a doctor's office, he remained seated and did not even get up to acknowledge their presence. Such conduct is a long step downward from the teachings of Hippocrates.

This book represents a straightforward account of Nancy Draper's experiences without any punches being pulled, and as such there were negative experiences as well as, thankfully, positive ones as well. At a time when Nancy's mother needed a game plan to reduce the level of pain she was forced to endure the caring figure of Dr. Ann Webster emerged. As the director of the HIV/AIDS Program at the Mind/Body Institute in Boston, Dr. Webster made available the most updated treatment in the new and rapidly expanding holistic treatment area. "Nancy has given her mother's story a voice," Dr Webster stated regarding "Burden of Silence", adding, "There are lessons for everyone in this book - lessons about acceptance, compassion, and forgiveness."

Ann Pozen, Psy.D., president of the National Association for Victims of Transfusion-Acquired AIDS, Inc., of Bethesda, Maryland, also provided a solid endorsement of "Burden of Silence":

"Nancy Draper has written a tender account of a daughter's devotion to her dying mother. The story, about a grandmother who developed AIDS from a contaminated blood transfusion, will inspire admiration for Ms. Draper's courage and persistence. It will also inspire rage against the blood banks that failed to screen blood donations adequately."

In addition to assisting Nancy's mother in the important holistic medicine area, seeking to ease the physical and mental pain she confronted, the act of bonding was also essential. During her mother's ordeal as well as the painful period following her death Nancy Draper found additional strength through interaction.

One of the most positive and impressive elements of her story is the message that strength can be acquired through reaching out with full sensitivity toward those in a comparable situation. She writes movingly about one such instance when she met a woman on an airplane who had lost a brother to AIDS. They were able to provide needed comfort to one another, which was extended even further by group interaction.

Draper correctly points out the terrible mistakes made in analyzing AIDS. She notes painfully how many people she knew shunned dealing with her mother and other AIDS patients for fear that even a touch may subject them to the disease. Another point well made was how long the federal government dragged its feet before speaking out officially about AIDS. It was not until 1987 that President Ronald Reagan even mentioned AIDS while numerous cases were being regularly reported from the early eighties.

The author relates to the tragedy of pernicious ignorance as a factor in hardening feelings toward AIDS patients. Those familiar with the eighties recall the thundering denunciations of Jerry Falwell and Pat Robertson in which they bluntly stated that AIDS sufferers were being punished for their sins. Their voices were immediately silenced after statistics poured in from Africa revealing enormous numbers of AIDS cases involving heterosexuals. Due to the substantial weight losses of sufferers, the disease became known as Slims throughout Africa.

After devoting a section to hospice care and the role it played during her mother's final days Nancy addresses the present and the future. She is proud of having contributed to the international AIDS quilt. In so doing she has kept her mother's name alive as well as joining hands with others who have suffered from AIDS by giving their lives and through empathizing with deaths of relatives and friends.

As Nancy Draper effectively argues, AIDS is a disease that should not prompt us to sweep it fearfully under the rug as we atrophy in a well of ignorance. Any of us could acquire AIDS, it should remain a paramount concern to all citizens of the world community, and together we must march forward to demand the maximum in research and commitment toward finding a cure.

23 of 23 people found the following review helpful:

5.0 out of 5 stars A Heart-felt Tribute, February 16, 2005

By 

Busy Mom (Ohio) - See all my reviews
(VINE VOICE)    (TOP 1000 REVIEWER)   

This review is from: A Burden of Silence: My Mother's Battle with AIDS (Paperback)

Even with all the publicity about AIDS today, there aren't enough books out there that describes a personal battle with this dreaded disease. This book is a wonderful attribute to the author's mother ~~ and a courageous story of her mother's battle against the stigma of having AIDS. I will even admit that when I first hear or read the word AIDS, I automatically think of the movie, "Philadelphia," and the courageous battles that those afflicted with the disease fight to get the virus studied so there will be a cure for it someday.

I do recall reading about tainted blood transfusions back in the late 80s and early 90s ~~ but you don't hear stories about those victims. Nancy Draper changed that. I will not be able to think of an AIDS victim without thinking of her mother.

Not only did AIDS afflicted her mother, it afflicted her whole family ~~ not with the virus but with the ignorance and the stigma associated with AIDS which people did consider it to be a gay disease. Nancy kept her parents' wishes to keep silent about the real cause of her mother's illness ~~ but it was a struggle for her. People's comments about not wanting to touch anyone if they knew that person had AIDS left a silent echo in Nancy's life as she struggles to take care of her mother and to make her last days comfortable. Her mother wanted so much to be held but she "felt dirty" and contaminated because of this awful virus. People's impersonal reaction to her situation leaves one shaking their heads ~~ and at the same time, reflective of how much more we need to educate people on this disease.

Nancy wrote a beautiful tribute to her mother and her mother should be proud. Nancy says that she wants the world to know about how AIDS affect not just the individual, but the family as well and their friends. It is one of the fastest-growing diseases out there and people need to be educated on what it is. This book is a great start to educating people on what AIDS is and how it affects everyone's lives.

2-16-05

21 of 21 people found the following review helpful:

5.0 out of 5 stars A story of love and support, September 14, 2004

By 

D. Rogers-Thornton (New Hampshire) - See all my reviews
(REAL NAME)   

This review is from: A Burden of Silence: My Mother's Battle with AIDS (Paperback)

I read Mrs. Draper's book in one sitting. Although I knew the ending I turned each page in hopes of a kinder outcome. She gives a loving voice to her mother's story and dignifies a disease that is still misunderstood. The tears I had were from how beautifully the book was written. Nancy walked us through several private years of her life in a way only a loving family member could do. I applaud her courage in writing so openly about such a painful subject.