Burden of silence promotes AIDS misconceptions
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The best thing about being a columnist is connecting to your readers.
When a recent column about AIDS brought me an e-mail from Nancy Draper, who lives in Maine, I was almost afraid to open it.
First of all, I am always surprised when someone far away finds my columns, with no Pittsburgh connection.
As it turns out, Miss Draper is always surfing the Internet to find updates on AIDS.
I expected a sad story about someone she knew who had AIDS, but I never guessed she would be relating the story about her mother, Irene, who had died after being infected with the HIV virus through a blood transfusion needed during heart bypass surgery in 1983.
She didn't know until five years later that she had been given infected blood, her HIV test coming back positive after she began suffering fevers, night sweats, swollen glands and a lingering cough.
It reminded me yet again that AIDS spares no one, has no boundaries, and can indeed be acquired with no malice, no explanation, no sex or age differentiations.
A recent Newsweek, devoted to AIDS 25 years later, renews the memories.
That a 69-year-old wife, mother and grandparent died too soon is sad enough.
That she was infected in the early years of the disease hitting our shores, when it wasn't really known how it was transferred or what its deadly effects would be, is sad as well.
AIDS was a raging epidemic in New York City in 1983 but there was no blood screening for HIV-positive blood. Sad enough.
That she suffered to the end, knowing it was a death sentence, is also very sad.
The saddest thing? That the illness was shameful, that she and her family suffered in silence and needed to lie to protect themselves from ridicule and ostracism.
Humiliation and rejection went with the diagnosis.
Nobody must know. It was Irene's wish, it was her husband's wish, and then it was their daughter's wish. Miss Draper even kept it from her children as well as friends and other family members.
So when Miss Draper sent me a message, thanking me for keeping AIDS in the public eye through the column, I was dumbfounded when she told me why she was so appreciative.
And then she related to me that she had felt driven to write a book about her mother's ordeal -- not the illness itself, but the fact that everyone was afraid to talk about it.
Her mother, in her final days, asked her to do so. And some family members still don't understand why anyone had to know.
It was such a touchy subject when Miss Draper was writing the book, her father's name was never mentioned, nor was their last name. Now she has told me. It is Hamel.
She referred only to Mom through most of the book. Irene appeared only a few times in the last chapters, but no last name.
"A Burden of Silence: My Mother's Battle With AIDS" (AuthorHouse, $16.75 paperback) is the book, first published in 2004.
The first chapter's title says it all: "No One Must Find Out."
Her father's first words to his daughter before the results of the test were known were: "We have decided to keep this a secret if the test results come back positive. Mom and I are afraid what people might think or do."
It's still going on. Maybe that's the hardest thing to believe in 2006.
Miss Draper has had her own sets of woes. She was diagnosed with a rare muscle disease, polymyositis, and rheumatoid arthritis when she was just 30.
That same year she learned her mother had lymphoma. Her father told her the doctor in Boston had suggested he not tell his wife.
"Even the word 'cancer' was not spoken," says Miss Draper. "They spoke English, but when they were keeping a secret my parents would speak in French. It frightened me. I really dislike secrecy."
Continuing the saga, her son Shawn was born with cerebral palsy, but obviously he proves you can make it in life no matter what. He is a Boston attorney.
Another son, Tom, has dyslexia and ADD (attention deficit disorder), but he too has graduated from college and works in Boston.
Still, she says, she has been blessed. She has been writing and publishing in the United States, Canada and Italy since 1981.
"I guess it's easy to sit back and have a cup of tea or coffee and watch TV. I don't have time for that. Too busy trying to change the world."
These are the people who teach me -- and touch me.
First Published June 11, 2006 12:00 am
