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Birds In Spring: Two Inspirational Women Who Faced Myeloma With Strength And Courage

By: Lou Ganim; Published: April 19, 2011 @ 12:45 pm | Comments Disabled

Back in 1988, Phyllis Susser, one of the founders and the executive director of Herbert G. Birch Community Services (now Birch Family Services), was establishing a home in Brooklyn for abandoned AIDS babies.

Some of us were helping her deal with the overwhelming negativity and ferocious opposition from the neighbors and the surrounding community.

It was at this Brooklyn residence for babies, whose only home to that point had been a hospital, that I met Geraldine Ferraro.

Back in the late 1980s, you have to understand that the fear of and misunderstanding about AIDS was rampant, and the hostility toward Phyllis’ East Flatbush community project was vehement. Two telephoned bomb threats in the days leading up to its opening brought in the NYPD from the 67th Precinct, which provided around-the-clock protection.

The misconceptions of the community were probably best expressed by the block association’s president, who told The New York Times regarding the AIDS babies: “They could spread the disease by the clothing, the garbage, the bath water.”

We know better today. At least I think we do.

Undeterred, Phyllis opened her home for AIDS babies (who were expected to live there until they were six years old – if they lived at all) on Friday, January 6, 1989.

On that day and into this superheated environment, Geraldine Ferraro strode confidently into the Birch Services home.

Phyllis had asked her if she would lend her name to this undertaking. Without hesitation, Ferraro said yes, that she would be honored. Thus, it became known as the Ferraro Residence.

We held a small dedication ceremony on that day and celebrated the arrival of the first baby, an infant boy only a few weeks old. By the way, you should know that last I checked, he is still alive and doing well. That’s how much things changed in short order in treating HIV-positive babies. Homes for orphaned AIDS babies are a distant memory; they are all gone.

Phyllis and I took Ferraro on a tour of the home, and at one point, Ferraro and I were alone and had a chance to chat (in the kitchen, of course – where else?). It was an opportunity for me to tell her how much I admired the things she had done and accomplished, not the least of which was courageously stepping into this controversial AIDS babies situation. It may not be the same as being the first woman to be nominated for Vice President of the United States, but it certainly was one more example of her ability to confront adversity – in this case someone else’s, the AIDS babies – and put some of the burden on her own shoulders.

I bring this up because the fact that she later developed multiple myeloma became all the more significant when several years later, I got my own diagnosis. I kept track of what was happening with her in terms of treatment and her activities, particularly over the past five years. I was inspired by the matter-of-fact way she dealt with the disease.

She faced myeloma with strength, determination, and feistiness, and lent her considerable voice as an advocate for those of us with the disease.

Her death last month came not directly from myeloma, but from “complications” of the disease, in her case pneumonia. That’s a potential all of us with greatly compromised immune systems face – death by an infection that resists medical intervention.

Also last month, although with less fanfare, at least here in the U.S., marked the passing of Faith Hamer in Jamaica, who was diagnosed with multiple myeloma in 2005. Hamer, an influential journalist and public health advocate, was another inspirational figure, approaching her diagnosis and disease with the same strong will as Ferraro.

I never met Hamer, but from what I’ve read about her and been told by others, she always looked at the positive, and at the same time was matter-of-fact about the effects of treatment, in spite of some of the difficulties she faced. In press interviews in Jamaica, she talked about being “favored,” and said she had developed a great empathy for persons living with other diseases. She said the support she’s had from family and friends was “awesome.”

One of the doctors at Memorial Sloan-Kettering Cancer Center, who knew Hamer, told me that she was, quite simply, “a lovely lady.”

I mentioned Hamer in a previous column, mostly in terms of a comment she made back in 2007 about living with myeloma, which bears repeating: “I would say what is important is the years that you have here. So don’t waste time getting depressed or feeling sorry for yourself.”

Every myeloma patient, I think, should put that quote up in bold letters someplace where they can see it every day.

Those of us with this disease should have role models – people who have confronted myeloma with strength and courage.

You couldn’t do much better than Geraldine Ferraro and Faith Hamer.

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