AIDS, Polio & Never Giving Up.
My mother’s birthday and World AIDS Day dovetailed each other for years, until her death at age 92, in 2007.
During her final years, I was grateful to be working for a national HIV/AIDS organization — life-affirming work which required me to travel across country in early December, to spread the message about HIV prevention, treatment & care. An added bonus was getting to celebrate my mother’s birthday with her, in person, each year.
She lived a grace-filled life, battling Polio for all of her existence, raising and diapering four children with “only one good arm,” and preparing homemade pasta for a steady flow of family and friends who traveled miles for her incomparable cooking. It was remarkable to watch her manipulate the pasta dough, with her one strong hand, as she kneaded it tirelessly on the flour-covered macaroni board.
She rarely complained, loved to play the digital slots with her lightening fast “good hand,” at the casino, and lived with the disease as an example of courage, love, tenacity and compassion for others. No matter how challenging things got, my mother did not know the meaning of giving up — on herself, or on those she loved.
For my mother’s 90th birthday — she got all “dolled up,” in a pink Boa and a “Happy Birthday” tiara to spend the day at the casino with her granddaughters, my sister Vera, and my brother-in-law Carlo, my mother’s care-givers for the last 14 years of her life, when she was largely confined to a wheelchair.
I was making my World AIDS Day educational trip to Southern California, and, as a gift, brought her an advanced-copy DVD of an HBO-produced story about FDR’s years in Warm Springs, Georgia, which depicted how he tenaciously battled his Polio, and did his physical therapy, day after day, to prevent further deterioration of his paralyzed muscles.
FDR was a hero, and almost a saint, to my mother since her childhood, and like him, she religiously followed her routine of daily physical therapy (coupled with praying on her Rosary Beads) right up until her final days.
As my mother and I watched the HBO film together, she gave a stream of commentary about how she, contracting Polio as an infant in the epidemic of 1915, was put into a Crippled Children’s Home (it’s actual name), and banned from NYC’s public swimming pools for fear she would infect others.
My mother always considered herself “fortunate” (her favorite word) to not be trapped in an Iron Lung to breath as many other “Polio Kids,” were, and “blessed” to be selected as a New York Times Fresh Air Fund Kid, where she was taken by bus to a special upstate summer camp for poor kids with Polio.
On the ride up to the Catskill Mountains from New York City, my mother remembered passing small-minded, small towns along the way with signs at their entrance that shouted: “No Polio Kids Allowed.”
“It was the same as with AIDS, today” this remarkable Italian woman, than 90 years old,” said. “Some people don’t give you a chance if you have a disease or a disability, but you can never let them get the best of you.”
And, she quickly added, “It helped to have some powerful advocates like FDR and the March of Dimes.”
For years until the Polio Vaccine was discovered in 1954 — some 60 years after the virus was identified — my mother dutifully dealt out her supply of dimes to the March of Dimes, determined to be part of something far bigger than herself.
Her help, she was convinced, would make it possible for medical researchers to find a cure for the disease that had paralyzed her on one side of her body, and spare another child from the same kind of suffering and stigma she endured, from narrow-minded members of her own family, and from a society all too quick to cast aside the disabled.
My mother’s instincts were exactly correct. Millions of others like her, with a strong sense of compassion and social responsibility, contributed hundreds of millions of dimes, and kept the search for a cure for polio on the top of the public’s priority list of public health imperatives for decades to come, when people still believed that medical science could save the world.
“If only people would support a March of Dimes for AIDS,” this 90-year old Italian woman with only a sixth-grade education would say.
“If only you had a fighter like FDR to find a vaccine for AIDS. And if only, you could convince the public that everyone has a responsibility to help each other.” She didn’t mince four-letter words when it came to describing anti-vaxxers.
That was my mother’s time-tested recipe for social responsibility. She clearly saw the connection between Polio and AIDS, between caring and compassion, between love and social action. A devout, progressive Catholic in the tradition of Dorothy Day and the Catholic Workers Movement, acting to improve the world and help others was the central commandment of her faith.
Giving up was never an option for Margaret Villano; in fact, it was a mortal sin. And each time she lifted her paralyzed arm up with her “good arm”, or carefully guided her “good hand” to put ten dimes in a specially designed giving card, you could feel that her hope, and action, could move the world.
