Fighting the Good Fight: Q&A with Survivor—and Game Changer—Bob Massie

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Michael Lionstar

Bob Massie

Bob Massie is an expert at overcoming hurdles in life. As a young boy he suffered from hemophilia and spent much of his childhood in braces, unable to walk. He contracted hepatitis and HIV after blood transfusions, lost both knees to joint deterioration and needed a new liver to survive. Gradually he fought back, and eventually succeeded not only in walking again but in traveling widely through a life of passion and commitment.

He’s offered himself to the Massachusetts General Hospital for medical studies—the results of which ushered in a new era of HIV research—served as an Episcopal minister, written a prizewinning book on South African apartheid, led one of America’s most innovative environmental groups, ran for office and created the world’s leading standard for corporate sustainability. He’s left little time for self pity. He writes about his journey from sickly child to international philanthropist with grace and candor in his memoir, A Song in the Night (Doubleday). TIME spoke with Massie at the New York offices of the New Economics Institute, where he serves as president.

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How has your outlook changed now that you’ve survived three often-fatal illnesses?

I have an incredible amount to be grateful for. Hemophilia, HIV and hepatitis are all very, very serious. And now—new liver, no cirrhosis, hepatitis C is gone, the HIV under control and the hemophilia cured. Each day I think, ‘What do I have to worry about? I’m fine. I’m still here.’

You were so often ahead of the curve when it came to ethical issues—you stormed out of your Princeton eating club because they wouldn’t allow women or minorities; you fought apartheid in South Africa—but physically you were always a little behind. At least when it came to cures.

It’s true. If I had been born earlier, I would not have survived. If I had been born later, I wouldn’t have the joint damage and wouldn’t have gotten HIV. It was a very particular moment in history: the medical care was good enough to keep me going and flawed enough to leave me to contract these viruses from blood.

You’ve always been very interested in race and equalityyou got to meet Muhammad Ali and Nelson Mandela. Any other influential meetings?

Desmond Tutu. I got to meet him several times. He was actually quite joyful—even when threatened with assassination, nothing crushed his spirit. Once I sat down with him in his office—he was the Archbishop of Cape Town. He put his hands on my head and said a long blessing in Xhosa. When he finished, he sat back down and said, ‘I know you didn’t understand what I said but let me assure you it was a beautiful blessing, and besides, it’s the language they speak in heaven.’

Why did you decide to write a book?

In 2011 the Chief of the Hematology Department at Brigham and Women’s Hospital asked me to give a grand rounds speech. My original title was ‘Surviving Hemophilia, HIV and Hepatitis.’ It was so boring. I decided to take a totally different approach and tell five stories instead.

Those five stories became the basis of the book?

Yes, they include what I call ‘the Superman story’—having hemophilia as a child and missing Halloween—fighting the U.S. Senate to take up the cause of monitoring blood products, being told about my HIV status, realizing I was much sicker than I thought and the story of the night before my surgery—the story that gave the book its title. Of course, there’s a sixth story, and that is that I’m still here.

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You must have felt indebted to the audience.

I finished the talk—to these 150 doctors and nurses—by saying that I want you to remember me standing right here. Whenever you think about the hard work, the sleepiness, the frustration, the difficulty, the heartache of what you do, I want you to remember me and I want you to imagine the rank upon rank of people behind me whom you have cared for. We have one thing to say to you, and that is thank you. They asked me for a copy of the speech and it went viral.

Most people in your position would have concentrated solely on their health. But you became quite committed to a number of causes, including racial equality.

In the book I explore the relationship between my medical story and my passions. The chapter on race is very important to me—I realized I’m not the only to have experienced discrimination or fear or for whom society is unjust. I had all these problems, but I’m not alone.

It’s quite amazing that you weren’t consumed by anger about your situation.

It’s grace from God. I was actually going to call this book ‘a memoir of resilience and grace’ instead of just ‘a memoir of resilience.’ For me probably the most important theme in my life is grace. I could talk about my religious faith, but also just the amount of people who helped me. I wish I could write a book of just nurses that took care of me. I don’t remember all their names but really hundreds of people took care of me in the middle of the night.

Not everyone shared your positivity.

There were a group of people who thought I was in denial: ‘Poor Bob, he doesn’t realize what’s ahead of him…” When I contracted HIV, I made a decision that I was only going to start counting the months when my T-cells dropped. Until then, I wasn’t going to worry about it too much.

But that never happened.

I’m very lucky. I’m one of the extremely rare people who have a natural genetic resistance to HIV. My unusual situation has even prompted several national documentaries.

You ran for Lt. Governor of Massachusetts in 1994. You were going to run for U.S. Senate this year, but withdrew your bid in October. Do you still have the political itch?

I think you have to have the perfect warped personality to enjoy politics. You have to love meeting tons of people and love talking all the time. It was hard for me to imagine that I would both be in the right place in my life and the position would open. Right now I’ve moved on to another part of my life.

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You’ve worked so hard for change. What do you think about the progress we’re making?

I was in South Africa during the apartheid period and the majority of people thought the only way it was going to end was over a violent and bloody civil war. When I started at Ceres [the coalition of environmental groups], the idea that companies would engage with the environment was a crazy idea. Now Ceres has 65 employees and a multi-million-dollar budget. When I was sick I read a biography of every president. (Some of the bios are very short so it’s not that hard of a job.) One of the thing that you see when you read history systematically is that things really do change—it’s just not always fast enough.

What is the greatest lesson you’ve learned?

All the hard things I went through enabled me to become wiser. Everybody becomes disabled at some point. Disability is not the thing that distinguishes me—it’s that these things happened to me early enough where I could benefit from the insights that most people don’t get until they are much older. And that gives me a kind of inner calm that is a source of joy and a source of peace. There are a lot things I am not worried about after everything I’ve been through.

There’s a very moving moment early in the book when you are hospitalized, receiving transfusions for your hemophilia, and your mother grabs your face and makes you promise that one day you’ll go dancing with her in Paris. Did you keep your promise?

We went dancing many times together when we lived in Paris 40 years ago. I could finally walk again—after the joint damage from my hemophilia had healed. We danced together once at a restaurant when celebrating the premiere of the movie that had been made from my father’s first book. As recently as 1996, we were at a New Year’s ball in St. Petersburg and we were dancing again.

But if by Paris she meant a beautiful future that we could both celebrate, one where we could both travel to extraordinary places and be together—then yes, we’re still dancing.

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