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5 Upsides of a Chronic Disease

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At my 25th college reunion, a classmate whom I hadn't met kindly asked me to talk about some of the positive things that had come out of inheriting a disease. This is what I said:


That's my grandmother Ann on her wedding day. Her husband would die in front of her when he was 44 years old. My poor Nana would later attend the funerals of both of her children, and her oldest grandchild. Three of those four sudden deaths had a single cause: polycystic kidney disease, or PKD -- a disease that was passed down to five or her six grandchildren, including me.

This is a normal kidney. It's the size of a fist.

That on the right is a polycystic kidney. "Polycystic" means "many pockets of fluid."

A healthy kidney weighs about five ounces. [Polycystic kidneys] can weigh 40 pounds each. Carriers are prone to high blood pressure and aneurysms. Along with some height and intelligence, I inherited those kidneys from my dad.

But I'm here to talk about the upside -- the good that has come of our family's history with these vile organs.

The first upside is that because he knew he might die young, my dad bought a lot of life insurance. I'm afraid that some of you may regret your laugh when I tell you what happened next. In 1984, my father drowned at the age of 42. He drowned. He certainly hadn't expected to die like that. But the insurance money put all four of his kids through college. And by the way, I don't hold it against anybody for laughing, believe me.

First Upside: Dad believed in life insurance. Which came in handy.

Two years after my father died, I needed a physical to maintain my spot as the worst rower on the freshman heavyweight crew. I asked the doctor at Holyoke Center to check for PKD. He found it.

Shaken, I walked back to my dorm. Alone, I looked out the window at the students, professors and tourists ambling through the Yard and I thought, "They can expect a full life. Mine may be half over."

Fourteen years passed, and I did very little about the disease.

Then my cousin Mike died. That's Mike and his dad, my Uncle Dick. Both would die of PKD, but Mike died first. He was just 35 when an aneurysm killed him, leaving two young kids behind.

Mike's death shocked me. We had grown up together, sneaking into movies, teasing each other about sports and politics. His death also brought my life into focus. I vowed to do all I could to help cure this disease before it took more of us.

Upside #2: A greater sense of purpose.

By telling Mike's story in email, I raised more than $10,000 for the following year's Walk for PKD. That brought me to the attention of a PKD Foundation volunteer who told me about a promising experimental drug.

As part of an ongoing trial, I've been taking that drug, tolvaptan, for 10 years. Its existence convinced me that it would be ethical for me to get married and have kids -- even though each of my kids would have a 50 percent chance of inheriting these kidneys.

Which leads me to upside #3: My wife, Victoria, who's up there with our little 5-month-old. She's sort of back in the shadows trying to keep the baby from being too loud. By our fourth date, I knew that I liked Victoria a lot, and so I knew I had to tell her about the disease. She took it extremely well. That was a lot for us to learn about each other on date #4. Usually fourth dates focus on... other things.

Upside #3: Learned something great, early, about future spouse.

Upside #4 is the deep generosity that I have received from just about everyone else.

When I email people about this, I'm asking somebody who has nothing to do with my disease -- and no chance of ever getting it -- to donate money to help cure it. What's in it for them? Here are four people, among many, who help anyway.

This is Steve Buchman. Each year he donates a large sum to support my Walk. The last time, I thanked him, and he said, "Look. For some reason, Bill, I get selfish pleasure from doing this. So you don't need to thank me. [Pause.] But you're welcome."

Angela Olivo is part-owner of Select Office Suites, which rents office space to small businesses in New York. It's been years since I was her tenant. Yet Angela and SOS generously support my Walk every year. She is a lovely woman. And I would never have known how lovely if I hadn't asked her for help.

That's my friend David Simons and me. When that photo was taken, David knew that he was dying of colon cancer. He died a few weeks after that photo was taken -- six years ago today, in fact. In his will he left $10,000 to the PKD Foundation in my name -- to cure a disease that he did not have. There are no words for how it felt when I learned that, that he had done that. And this past January, David's mom, Pat Bonardi, without my asking her, donated to my upcoming PKD Walk. Now this is a woman who has had the worst loss any parent can have -- but it was to cancer, not PKD. Yet she is supporting us, without ever being asked.

If I didn't have PKD, I would never have asked these people for support. And I probably would never have imagined that anyone could give as generously as these four people, and so many others, including some in this room, have done.

Upside #4: People have been so generous. How can I ever be cynical again?

Then the PKD helped me experience something very unexpected: I found out what it must feel like to be Brad Pitt.

Some friends made me a kidney costume. I first wore it to an evening benefit at a Manhattan museum where nobody knew me.

En route to the benefit, alone in a cab at night, I felt very anxious and insecure. I wasn't sure it was a good idea at all, and I expected some attendees to ridicule me. And then I thought about my young nieces, who may develop this disease as well. I knew that the costume would make them smile, and I told myself I was wearing it for them.

When I walked in, feeling odd, three lovely young women ran toward me, and said, "Oh, please, please -- will you please take a picture with us?"

A gorgeous woman said to me, "What are you?" I said, "I'm a kidney, darling, what are you?" She said, "I'm just a girrrrl."

And as I was leaving, another beautiful woman took off her heels, ran barefoot on cobblestones, crashed into my foam and said, "You have to come to our afterparty. I don't know you, but you're the only real thing here."

Upside #5: Got to feel like a sex symbol.

I skipped the afterparty. I went home and, like Cinderella, became normal again. I'm a happily married father of three lovely girls, and I never need to feel like Brad Pitt again.

I swear.

Thank you, Kim Harris Gardner, for inviting me to focus on the good things that have come out of this disease. And thank you all for listening. When I had just been diagnosed, and was looking out the dorm window, I may have seen some of you walking by. I didn't think then that I would be able to see you again, when I was 47 years old. But I'm seeing you now. Thank you for being here.

I welcome your help at To learn more about PKD and join the fight, please visit The PKD Foundation. Thank you.