Writing is what writers do when something happens to them.I felt like I was doing something useful.I totally felt that he was supporting the project -he was so into learning everything he could about everything that I felt him cheering me on.And also, just selfishly,he was a piece of work. So doing the book gave me an excuse to spend an extra year with him -going through photos, his projects and piles of things. It was fun!
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.
So, one month, his CAT scan was paid by UnitedHealth and it cost my employer $2,586.60. Three months later, after the sale, the new insurer, Blue Cross, paid $775.68. And at that time, Medicare was reimbursing $250.94 for the same procedure. It was the same hospital, same patient, probably even the same machine. The only thing that had changed was the insurance company. What's that all about? It didn't mean a ton to me, because my employer was picking up the tab. But now that co-pays are getting so much higher, it's going to mean that people are going to be paying wildly different amounts for the same thing, often not knowing why -- or even knowing in advance how much it was going to cost.
Terence's medical records by Amanda Bennett collection
JB: That's interesting and indeed relevant to our national current health care conversation. On a personal level, how helpful was it to turn your investigative eye on this, Amanda? Did it help you heal?
AB: I loved doing it! Writing is what writers do when something happens to them. I felt like I was doing something useful. I totally felt that he was supporting the project - he was so into learning everything he could about everything that I felt him cheering me on. And also, just selfishly, as you point out, he was a piece of work. So doing the book gave me an excuse to spend an extra year with him -- going through photos and videos and all his projects and piles of things and letters and notes. It was fun.
taken in Philadelphia by a Pulitzer-Prize winning photographer,a great friend of ours in China by Amanda Bennett collection, taken by Neal Ulevich
JB: Because the two of you were so focused on the fight, you didn't really get to say goodbye as you might have wanted. What was that like?
AB: Well, it was really sad. I wouldn't have wanted to give up the fight, but I wish that we hadn't been presented with such a stark choice -- either fight or give up and go into hospice. I think that if we had been able to think of both things together -- that we were going to fight AND that sooner or later everyone dies and we need to think about how that's going to happen -- we could have made some better choices. It might have affected only the last week or so, maybe. But that was a pretty important week.
JB: Agreed. How has your book been received?
AB: It's been amazing. So many people have written -- and all their letters start with personal stories: "My mother"... "My husband"... "My wife"... "My brother"... It seems that my experience has been a very common experience. It's also been good to see how many professional organizations -- cancer communities, hospices, hospitals, medical schools -- are looking for insight. I've spent a lot of the past year speaking to groups like that and finding that everyone is looking for a way to make this experience better for everyone.
Thanksgiving, 2007, three weeks before Terence died by Amanda Bennett collection
JB: Do you have plans with this going forward?
AB: Yes, I'm hoping to continue to help people think about this issue, to speak to groups, to help particularly with places that are trying to promote price transparency and more honest end of life discussions.
JB: Since Terence died, you've found love again. Yet, Terence is still very much a part of your life. Is that hard? Do you ever feel disloyal to one or both of them?
AB: Not at all. In fact, quite the opposite. I feel incredibly lucky that somehow lightning struck twice - and I have been able to love two such extraordinary men in one lifetime!
JB: Good for you, Amanda! What haven't we touched on yet?
AB: I think one important thing is money. The health care reimbursement system by and large makes people choose between aggressive treatment and hospice. That means that people need to essentially give up hope in order to get the benefits of hospice. I think in the future, a more porous border between the two will help people think of this subject in a more realistic way, and to think about fighting hard for a cure AND at the same time being more open to considering what the future might possibly hold.
JB: It makes sense to me; I like it. In all the excitement, we didn't get to talk about what you're working on now.
AB: Ah -- I am rolling my eyes back into my head waiting for inspiration to strike!
Amanda by Amanda Bennett collection
JB: [I'm not too worried on that score, Amanda...] And is that on or off the record?
AB: Ha! On!
JB: Anything to add before we wrap this up?
AB: Just that I hope some of my experiences might be helpful to other people going through this! And thank you so much.
JB: It was great talking with you, Amanda. Thanks so much!
TED Med talk, 2013: When Death is the Enemy, What is Victory?
The Cost of Hope website
Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of transparency and the ability to accurately check and authenticate the vote cast, these systems can alter election results and therefore are simply antithetical to democratic principles and functioning.
Since the pivotal 2004 Presidential election, Joan has come to see the connection between a broken election system, a dysfunctional, corporate media and a total lack of campaign finance reform. This has led her to enlarge the parameters of her writing to include interviews with whistle-blowers and articulate others who give a view quite different from that presented by the mainstream media. She also turns the spotlight on activists and ordinary folks who are striving to make a difference, to clean up and improve their corner of the world. By focusing on these intrepid individuals, she gives hope and inspiration to those who might otherwise be turned off and alienated. She also interviews people in the arts in all their variations - authors, journalists, filmmakers, actors, playwrights, and artists. Why? The bottom line: without art and inspiration, we lose one of the best parts of ourselves. And we're all in this together. If Joan can keep even one of her fellow citizens going another day, she considers her job well done.
When Joan hit one million page views, OEN Managing Editor, Meryl Ann Butler interviewed her, turning interviewer briefly into interviewee. Read the interview here.
While the news is often quite depressing, Joan nevertheless strives to maintain her mantra: "Grab life now in an exuberant embrace!"
Joan has been Election Integrity Editor for OpEdNews since December, 2005. Her articles also appear at Huffington Post, RepublicMedia.TV and Scoop.co.nz.