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

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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.

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

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.

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.

A Burden of Silence by Nancy Draper is an incredibly moving account of a devoted daughter dealing with her mother's battle with AIDS. What makes this story so heart wrenching is the fact that her mother innocently contracted the AIDS virus in her sixties via a blood transfusion.

I think that we can all read about and have compassion of those suffering from AIDS, but one can never ultimately know what is really like until someone close to us has to deal with the virus, then the situation becomes surreal. Even though we have come so far since the 80s in dealing with and treating the AIDS virus and our knowledge is that much greater, there still, unfortunately, is a stigma placed by society on those who have the disease. Nancy Draper lets us into her own private world, her own private "hell" so to speak, and lets us witness first hand the struggles, the trails, the tribulations she and her family had to deal with on a daily basis. The reader suffers along with her and Draper so subtly weaves the reader into her burdens and sorrows as well as her frustrations, so wonderfully, that one cannot feel anything but compassion and admiration for this entire family.

Ms. Draper waited quite a long time to publish her story and one can understandably see why, but it is indeed a story meant to be shared with the world. Education still needs to be done for those who "still don't get it." AIDS patients, whether young or old, still need our understanding, love and compassion. Thankfully, Ms. Draper decided to tell her story, to help educate those still in the dark as well as a reminder to those of us who do get it, that this disease is here --- still and these patients still need us.

This book is a beautiful testimonial of love to her mother and to her family who rallied around her and did not give up. I cannot even begin to imagine the sorrow and personal suffering and ostracizing that her mother endured, yet her mother continued to shine brightly.

A very moving story and I highly recommend this book, especially for those who do have a family member suffering from the virus. It is my hope that things are a tad bit more supportative for aids suffers today, than when Nancy's mother was going thru her ordeal.

Shock, secrecy, and fear of rejection led Nancy's mother to a life of isolation and loneliness after she was diagnosed HIV positive at age sixty-six, the result of a contaminated blood transfusion during bypass surgery many years earlier.

Nancy doesn't pull any punches in revealing the story of her mother's battle with HIV, AIDS and dementia. She expresses anger that her mother became a victim of the government's lack of vigilance in protecting the blood supply in the early and mid-1980s. She blames the FDA for not following the screening procedures recommended by the Centers for Disease Control and her account of the minimal knowledge doctors provided her mother and their insensitivity is outrageous.

Unfortunately, Nancy's mother insisted that her illness remain a secret. This was a huge burden on Nancy, since she couldn't confide in her friends or tell her own teenage sons. Besides having battled her own muscle disease, rheumatoid arthritis, and taking care of her son who was born with cerebral palsy, she was now caretaker of her own mother. In the final stages, when the virus affected the brain and dementia set in, day-by-day, Nancy watched her mother slowly lose her memory, speech, and ability to walk. But a few months before she died, she asked Nancy to write about her battle with AIDS, so that others wouldn't ever suffer in silence as she had.

Nancy is a brave, courageous and compassionate woman who gave her mother endless love and support. She keeps her memory alive through the NAMES Project AIDS Memorial Quilt. At the bottom of her mother's panel, she writes, "It hurts to know you suffered in silence." A warrior for AIDS education and prevention, Nancy volunteered in Washington, D.C. by participating in a display on the Ellipse where 8,000 new panels were displayed.

A Burden of Silence: My Mother's Battle with AIDS, is filled with humorous, fond memories, and I found it inspiring and filled with courage, faith, and deep love between a mother and daughter. She also includes holistic and music therapy recommendations that can be helpful to anyone with dementia or any disease. I encourage you to read this tender love story.

-Jacqueline Marcell, Author of 'Elder Rage', International Speaker on Eldercare & Alzheimer's, and Host of the 'Coping With Caregiving' Internet Radio Show at wsRadio

If "A Burden of Silence" doesn't tug at your heart strings, nothing will. Nancy Draper's story will remind you that people with AIDS need love too. No one with AIDS should have to suffer in silence. This book honors the memory of her mother.

Nancy Draper's book will hopefully be a starting point for discussion about this dreaded disease. Whether it be with friend or family member, Nancy demonstrates why it is so crucial to talk about how this disease, and our society's reaction to it, isolates and stigmatizes our loved ones. Nancy also offers ways of coping by finding humor even in those darkest of days. Only somebody who has kept this secret for many years can know the what it has cost. I urge everyone to read this book and learn the valuable lessons Nancy has shared as a loving memorial to her Mom.

"A Burden of Silence" is the sort of book that could have been depressing, but I finished it feeling moved and encouraged by the Draper family's quiet heroism. They were thrown into the frightening world of HIV/AIDS when Nancy's 66 year old mother was infected by a blood donor during bypass surgery. Her story is one of anger, heartbreak, and fear that is lifted into high inspiration by the deeper and more profound emotions of faith and love. Most of all, it teaches us the necessity of reaching out to others, no matter how afraid we are. I'd recommend it to anyone, but especially to families going through similar experiences.

Ms. Nancy Draper has done us a great service by writing her book. She makes the point: HIV can happen to anyone. We've heard that before, when we've bothered to pay attention. I suspect that secretly, many of us still cling to an irrational belief that (excepting those people born with hemophilia) someone who contracts this deadly virus must have "done something" to bring it on. Nancy's mother's story proves this just isn't so.

Ms. Draper's courage in writing her book is matched only by the courage with which she faced her mother's demise. Her writing is clear and informative, without dwelling on the not-so-pretty details of AIDS to make her point. Her story is sad but humanizing and inspiring as well, while illustrating the culpability of the "powers that be" in putting off actions (or legislation) crucial to the public good. Whether your focus of concern is the advent of "Mad Cow" in this country, environmental destruction and its accompanying health risks, or the irresponsibility of drug companies, this book will add to your conviction that we must all make our voices heard, so the creaking of the bureaucratic wheel doesn't drown out all calls for compassion, responsibility and reason.