Nancy A Draper

Roger Woodruff, (Director of Palliative Care, Austin Health, Melbourne, Australia) writes: 

"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."

 Joanna Daneman (Middletown, Delaware) writes:
"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 80s 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 sanatoria to threat 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/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.

   Margaret Mitchell Dukore, Novelist and Playwright - OR writes:

"In the early eighties, most people believed that AIDS could only be contracted by homosexual men and maybe junkies and Haitians. At first, It didn't even have a NAME. It was called 'That Gay Cancer.' Even Cosmopolitan Magazine had an article about how women 'didn't have to worry.'

The most important message Nancy Draper's book, A Burden of Silence, conveys is that anyone can get the AIDS virus. Someone as innocent as a new born nursing baby, whose mother unknowingly contracted the virus via a blood transfusion given to her during childbirth, and in Nancy's case, it was her mother- a 66 year old GRANDMOTHER - who received tainted blood during heart surgery. Of course, now, most of the blood in the U.S. is tested, and people are more educated about how to prevent it. But there are an appalling number of people who STILL think you can get if from drinking from the same water glass as someone with AIDS. IMAGINE -during the time when PEOPLE knew nothing about it and fearing you might alienate friends...maybe in some cases...family.

The importance of  A Burden of Silence is that there are people who still don't understand the virus, but they can read about how one real person (in one of the lowest risk groups) not only coped with the disease, but felt she had to hide it. By humanizing it down to one person, A Burden of Silence is an important book. People must know about compassion vs. fear. To quote Arthur Miller: 'Attention must be paid.'