Amanda by Bloomberg
My guest today is Pulitzer Prize winning journalist Amanda Bennett, author of The Cost of Hope: The Story of a Marriage, a Family, and the Quest for Life [Random House, 2012].
JB: Welcome to OpEdNews, Amanda. Your husband, Terence Foley, contracted a rare form of cancer and, after a long struggle, died. Yet, you don't view this struggle, which you went through together, as a defeat. Why not?
AB: Terence and I fought really hard and we tried everything we could. In some ways, the hope that all the different treatment possibilities gave us made those years really wonderful. We never really believed we would lose. We were fighting together and so that helped us feel like there was life ahead. That meant our last seven years weren't spent just waiting for him to die, but in feeling like we were doing something together.
book cover by Amanda Bennett collection
JB: Terence was quite a character; you've described him as larger than life. Tell us more.
AB: Well, the very first thing he ever told me was a lie! We were both in Peking (it was that long ago!) I was a journalist for the Wall Street Journal and he pretended to be a Fulbright Scholar studying China-Soviet relations in order to get me to talk to him at a party. He really was the China representative for the American Soybean Association! When I found out and got mad at him he said: Well, how long would you have talked to me if I had told you I was in soybeans? Which I guess in retrospect is pretty reasonable. He spoke a half-dozen language -- Chinese, Japanese, Spanish, French..... he played almost two-dozen musical instruments. He got his Ph.D. in Chinese history in his 60s. He was so smart and spoke such good Chinese that everyone who knew him in China thought he was a spy. I'm still not sure he wasn't!
traditional staged Peking/Beijing Wedding photo by Amanda Bennett collection
JB: And the differences in your temperaments and personal styles made your relationship anything but smooth. That collective combativeness, honed over decades of living together, was later turned outward to take on Terence's illness and treatment. Did you ever think about how what might have been viewed as irritating or annoying might have ultimately served the two of you well?
AB: HA! Well, we were both very feisty. Both very sure of ourselves. Very competitive. We both had our hands on the steering wheel. Sometimes, of course, we were steering the same car in two different directions - that's when it became lively! But in the case of his illness, we both had our hands on the wheel and we were driving totally in the same direction. We both wanted him to live forever!
in Guangzhou on the day we officially adopted Georgia by Amanda Bennett collection
JB: I got that! What's the difference between hope and denial, Amanda? And why is hope the medical equivalent of the black sheep?
AB: I think sometimes it's really hard to tell the difference between hope and denial. During the seven years we fought Terence's disease I used to say sometimes that I was practicing creative denial. Denial? Hope? It kept us from falling into despair, and meant that we were able to live a very full life together -- Australia. Italy. Spain. Graduations. Thanksgivings. Parties. Little League. Recitals. All the normal stuff held our attention because we always approached the illness with hope. So if it's so effective, why is it a medical black sheep? Why do doctors and nurses use the word with such scorn? Well, I think it's something everyone should think about.
If the medical system is always going to be saying -- well, we can't do this or that because the family is in denial -- then it's always going to be hard to move to the next level. Because sooner or later, everyone dies, so how do we make this transition more effectively? To get people to think constructively about the full range of the illness -- recognize that hope/denial is a very useful, very human emotion and that we can't stop it and we don't want to take it away, but maybe we can AUGMENT it with some additional thinking about how we will recognize a change, and what we might want to do if we see that change.
last family photo, in front of our favorite Chinese restaurant, 2007 by Amanda Bennett collection
JB: Over the long course of Terence's illness, you moved at least once and changed health insurance companies, too. So, when you went back in to analyze the cost of his treatment, you had some advantages that the average person does not. Can you talk about that?
AB: Yes. After Terence died, I went back and got all our records. Because we had moved so much, I was able to see the way different hospitals in different parts of the country charged for the same thing. And there were wide variations. More interesting, though, was that because my employer was sold during a time that Terence was undergoing intensive treatment, I was able to see what the charges were for the exact procedure when nothing had changed but the insurance company that was paying.