Transplant Recipient James Redford.

Show: FRESH AIR
Date: SEPTEMBER 22, 1999
Time: 12:00
Tran: 092201np.217
Type: FEATURE
Head: Interview with Spaulding Gray
Sect: Entertainment
Time: 12:06

This is a rush transcript. This copy may not
be in its final form and may be updated.

TERRY GROSS, HOST: From WHYY in Philadelphia, I'm Terry Gross with FRESH AIR.

On today's FRESH AIR, one of the most unlikely people to be the father in a nuclear family, performance artist Spaulding Gray. For years he's been chronicling his life in a series of monologues. His latest explains how he ended up in his 50s living with his new significant other, their two young sons and her daughter.

Also, James Redford tells us about the liver transplants that saved his life. The transplants inspired him to produce a new documentary about organ donors and recipients which premiers tomorrow on HBO. He grew up with movies. His father is Robert Redford.

That's all coming up on FRESH AIR.

First the news.

(NEWS BREAK)

GROSS: This is FRESH AIR. I'm Terry Gross.

My guest, Spaulding Gray, has turned his life into theater, performing monologues -- often very funny ones -- about his personal and professional adventures. Whatever the subject, the real subject is usually Gray's neuroses and obsessions about illness, death and the difficulty of letting go and enjoying himself.

Those of us who have been following him over the years confront a new Spaulding Gray in his latest book and monologue, "Morning, Noon, and Night." Spaulding Gray, who has spent his adult life focusing on his art, living in a Manhattan loft when he wasn't wandering the world, is now the father in a nuclear family on Long Island. He moved there in his mid-50s with his new significant other, Cathy (ph), their young son, Forrest (ph), and Cathy's daughter, Marissa (ph).

Shortly after they moved, Cathy surprised Spaulding with the news she was pregnant again. His first reaction was to suggest an abortion because he couldn't imagine further complicating his new life with a third child. But he later decided he was too old to choose death, and they had the baby.

To appreciate how dramatically his life has changed, you have to know a little about his earlier life.

Let's first of all pick up where we left off before we resume your story. I think it was two monologues ago, it ended with your marriage to Renee Schafransky (ph), who also used to direct your performances. Then your monologue right before the new one was called "It's a Slippery Slope," in which you explained that after you got married, you were having an affair, and shortly after you got married, the woman you were having an affair with got pregnant with your baby.

Would you pick up the story from there?

(LAUGHTER)

GROSS: Take it, Spaulding!

(LAUGHTER)

SPAULDING GRAY, MONOLOGIST: And that's a good cue! In other words, I should recap that...

GROSS: Exactly.

GRAY: ... what happens in "It's a Slippery Slope."

GROSS: This is your equivalent of...

GRAY: That's a good...

GROSS: Yeah.

GRAY: That's a good and difficult question because part of me is probably trying to forget that part of my history. And so what happened was there was a very strong reaction all around, and I acted out. And I am not sure to this day whether I had a kind of nervous collapse or I acted the nervous collapse because I simply couldn't deal with the enormous amount of -- A -- responsibility for a child I thought I didn't want -- B -- the guilt for the betrayal, certainly, of Renee.

If anything, I still feel that that was the issue with me, that I would never -- that I've learned that lesson. I can never go through that again, that I should have known myself better and been more honest with what was going on.

But the secret side of me was needing to be a father. And I was completely, I assure you, unaware of that. So what happened in the break was that Renee got strong enough, got her stuff together to -- to walk out on me until some reconciliation. What we went into -- we went into couple counseling, now that I think of it, and I don't think that's in the monologue.

And neither of -- I couldn't come to a clear place about what I wanted, and the therapist said, "I don't think we can continue working together. We're in a free-fall state," whatever that meant. And it definitely felt like really falling, and I did not know where I was going to hit.

And where I ended up hitting was holding my -- eventually taking the initiative to go and see my son, at last, when he was 8 months old, and holding him, and that's where I hit. That's where I came down. And some part of me quite clearly realized that this was not going to work with me with Renee.

She had made conditions of me going to therapy, of me being completely monogamous, completely sober and completely devoted to her and also only receiving the baby like a football. That's how she envisioned it, that Cathy would open the door and pass Forrest out to me, that I would never see Cathy.

And I knew if Renee was running by those rules, I couldn't answer to them. And that's -- and I fell quite in love with my son, and then began -- through him and with him -- to have a relationship with his mother, who I had only known in a more fantasy affair situation that wasn't grounded in family at all.

So it was a complete turnaround, and everything that was supposed to happen in an affair, where you're supposed to, you know, break up with your wife for the woman you're with and not be with the woman you're having the affair with, but start a whole new life, didn't happen. It was a real surprise. And now we have a second child.

GROSS: Now, you say in your new book that you never thought that at the age of 56 you'd recreate your original family structure...

GRAY: Right.

GROSS: ... of two adults and three children. And I'll add to that you really always seemed like the least likely person to end up being the father in a nuclear family. You know, up until, I guess, your mid-50s, you had chosen a completely different life, a life of kind of experimental art and New York City loft living and touring the country. And you know, monogamy -- well, not monogamy, many partners plus long-term relationships. So this kind of nuclear family seemed like a very improbable choice for you.

GRAY: Right.

GROSS: Do you feel like you're...

GRAY: But on the other side...

GROSS: Yeah. Go ahead.

GRAY: On the other side of that totally probable just because the other really ran its course.

GROSS: Did that -- did you feel like you came to a dead end in the other life?

GRAY: I only feel that now because I don't miss it. You know, when I crave it, I'm clear that it's a fantasy, a craving fantasy. And when I play the fantasy all the way through, I realize I'm in the best possible place I could be in right now.

GROSS: So you feel like you're living the life you're supposed to be living, not like...

GRAY: Well, I feel that...

GROSS: ... you stumbled into it and now you'll make the most of it.

GRAY: I feel that I'm living a life of necessity, which I -- which I hadn't felt before. I had never -- I can remember saying this recently to my brother, my older brother and a sister-in-law, who were visiting us, and I picked up the -- who's 2-and-a-half now, in my arms, and I said, "Here -- here's my anchor. Here's my necessity."

And I had never -- you know, I was coming more and more -- feeling that I had to generate work because I was a monologist and that people were waiting for the next work, and that beyond that and beyond -- and that relationship with Renee was getting more and more thinned out around that work relationship and her being the co-writer and that -- and beyond that, I honestly didn't feel the necessity. I felt a kind of dabbling, just a disconnection, particularly with New York City, too. I really was losing that, and that move out was enormously important for me.

And when I talk about -- in "It's a Slippery Slope," you know, there's a line about people sometimes don't see what the parallels, as it were, with the downhill skiing. And for me, coming into that sport changed my relationship to winter and life and my body. And being outdoors for seven, eight hours at a time like that just brought me into a whole craving for outdoor activities that I really am immersed in now in Sag Harbor.

GROSS: Now, you say that children led to what you call the "double chaos factor." Explain what the double chaos factor is.

GRAY: When I lived in New York City with two previous relationships before -- two women, Elizabeth LeCompte (ph) and Renee Schafransky -- in both cases there were no children, but there was a lot of work. We were doing intensive work, and I was also out in the city alone a lot.

I would take long walks and be enthralled by what I call the mystical chaos of New York City, that it should not be functioning, but it is. It's functional dysfunction, or dysfunctional functionalism. Just -- just -- it was -- to me it was total, constant theater. And I don't mean that in a cruel, distancing way, but in a way you have to do that with New York to cope with it, and that, of course, leads to irony and all the rest of the diseases.

But here I was trouncing around New York, getting big hits of it, and then I would come home to the two women that were centering and calming me and nurturing me. And so in a way, I was the child in that relationship. And once there were children in the loft, it was totally chaotic, and also they weren't acknowledging me in the same way. And Cathy didn't have the same energy to totally aim at me.

You know, if I'd come home from tour -- I describe this in "It's a Slippery Slope" -- the chaos -- Forrest was up on my desk naked. Marissa's running around singing her life in opera. And they notice me, but they don't go, "Oh, sit down! Can I pour you a beer? Was it hard out on the road, honey?"

So all of that changed, you see, and I needed to get to a place that was -- where I could walk outdoors and there'd be some peace.

GROSS: So the double chaos factor is that there's chaos on the streets and then there's chaos at home, too.

GRAY: Yeah.

GROSS: Well, do you feel like you've had to become less dependent, in a way? Because, like, you said in some ways you were the child in the relationship, expecting a lot of attention and nurturing from the woman in your life. But when you're a father and the woman in your life is a mother, a lot of that nurturing really has to go to the kids. So has that -- yeah.

GRAY: Yeah. Well, I'm growing up, and it's really amazing to be growing up at almost 60. But I mean, an example of that would be that Cathy has a talent agency, and she handles solo performers. And she was out booking at a booking conference, and this was just this Wednesday to Sunday in Kansas City. So I was with the children.

Now, we have a baby-sitter that spells me in the afternoon, but I'm dealing with getting them off in the morning and getting them down at night. And the storm came. We had the hurricane watch that didn't really hit. And I had this little sailboat, you know, that I just love, a little Beedlecap (ph), a 15-foot day sailer that had to be taken out because of the storm. And then they didn't put it back in the next day.

And I was saying to Cathy, "But I wanted to go sailing today!" And she goes, "You're whining." And I thought, "She's right." And I said, "But what I need to hear from you is, `Oh, it's really, really rough. I'm sorry I left you. You're such a little pukis (ph), and you -- I'm just sorry the children'" -- what she says instead is "You are so lucky to have such wonderful children, and I've covered you with the baby-sitter," and you know, underlying that, as in "Remember, grow up."

GROSS: You always seem to need a lot of nurturing. Do you feel comfortable in the role of kind of being the nurturer, as the father?

GRAY: I do, yeah, because it's such a surprise that it's like a new part of me blossomed. So it's a dimension there. And I like it so much that I get nervous, as far as -- Forrest will be 7 on Monday, and he's much more independent. So then I need to see Theo (ph) being dependent on me so that I can still have that nurturing force going. And Theo is a less dependent child than Forrest was. It's interesting to see that. But I don't want to lose that. You know, I don't want to have it taken away from me by their independence.

GROSS: My guest is Spaulding Gray. His new book and monologue are called "Morning, Noon, and Night." We'll talk more after a break.

This is FRESH AIR.

(ID BREAK)

GROSS: My guest is Spaulding Gray. His new book and monologue are called "Morning, Noon, and Night."

Now, as you point out, your prior relationships with women didn't include children. And in your long-term relationships, the creative act was, you know -- the focus of your attention was art, not family and children. Now that you have three children in the house, is it hard for you to work? Is it hard for you to focus?

GRAY: Yeah, that's a big issue now, and I think about it a lot. I'm thinking about it more than I'm doing it. "Morning, Noon, and Night" was the perfect monologue for me being at home a lot because it was a way of organizing that chaos. And now that it's finished, I don't want to go into an update or an ongoing thing of this. I mean, I don't want to turn the family into an "Ozzie and Harriet" situation or an ongoing sitcom.

And why don't I want to? I mean, because part of me thinks that would be really easy to do. And the responsible part of me says that I would like the children to become more themselves than minor celebrities, major people rather than minor celebrities. And I think too much of that, of turning them into characters, is ultimately going to be deadly.

So a part of me says it's time to give myself an assignment, you know, to look at something else that is relative to the community but not right in the family, so that I don't have to travel, say, to Burma.

And there are things that loom their heads, and then I say, "Well, I have to go out and really look at these things and pay attention to them." Then I go like this -- and I said this to my sister-in-law recently -- "It feels so much like homework." And she goes, "But it is homework, Spaulding." And then I realized that that's what my problem was! (laughs) I could never do homework or assignments.

So I'm floundering now, and I'm in a space right now where I'm not working. I'm keeping my journals and I'm reading a lot. I'm, you know, cross-reading in a -- and I'm paying attention. But I don't know what the focus is now on what the new work is. It's far, far from my scope.

GROSS: You say in "Morning, Noon, and Night" that you used to never be interested in the real world. You were more interested in creating your own world through theater. And now you're very much in the real world, in the sense that a lot of your time is spent taking care of kids. You're home a lot more than I think you've probably ever been in your life? Is that fair to say?

GRAY: Uh-huh. Yeah.

GROSS: Has the real world become more interesting? Do you find that there's a way to have both, you know, to have the theater world, the art world and the real world in your life at the same time?

GRAY: Well, for me, ultimately, the theater world became what was happening outside of the theater in New York City. So it was the issue of the street. And I also tell a funny anecdote about that, about Forrest and I going to see the David Copperfield show and going up on the subway from Soho up -- on West Broadway and Soho up to -- all the things that happened on the way to 42nd Street.

And I say when I got there, the David Copperfield show -- well, it was good, but compared to the show out there, it -- there's a rival. And so what I find -- how theater began to spread outside of the theater to me, and I got less and less interested in going in to see what I call "acting."

You know, you walk in -- with the exception, perhaps, of "Death of a Salesman," which I thought was the embodiment of the role, this new production of it -- I walk in -- you see people acting on stage. And I think, "Well, why are they acting?" I mean, life already feels distant enough. It feels almost like an act.

So I began to see theater as all around me, and now, certainly, the family is the ultimate theater. If you can, when you can, in a good way, esthetically step outside and really appreciate the children's performance, and then even appreciate your interaction with them, at it's best -- at it's best it is rocking theater.

GROSS: It sounds very distancing to me to see your family as theater.

GRAY: I know it does, and people are going to react to that in the pejorative, I'm sure. And critics already have. When I say one of my favorite things to do is -- I describe our house, 1890s house, as looking like a doll's house because there's these French doors down below.

And I say at night I sometimes, on stormy nights, want to run outside to get distance on the family and see the children playing in this doll's house in front of the fireplace, and the mother on the other side of the wall cooking and cleaning and cooking and cleaning and cooking and cleaning.

And that is -- I remember, I think it was a San Francisco critic that said "Gray is still distant," you know? I mean, what else is a writer? You know, I'm not going to change that way and -- but I'm in and out of it. You know, I am in -- there are times when -- I mean, when the family's really rocking, it's like being on a sinking ship. This morning getting them off to school and getting into the city on that bus from Sag Harbor was just like a scene out of "The Titanic." And that's not theater then. I mean, someone else (INAUDIBLE)

GROSS: You know, now when you're talking about your life, you're also talking about your whole family's lives.

GRAY: Yeah.

GROSS: Including your kids. And here's -- here's something I'm wondering about. You know, you explain in your monologues that your first son was born when you weren't even having a relationship with his mother. And then you got together again afterwards. Your second son, you at first -- you know, you -- you at first opted for abortion, but then changed your mind. This is the kind of thing with parents often, like, never want their children to find out about.

GRAY: Right.

GROSS: And of course, I mean, this is -- this is, like, on the public record now. So I wonder how you feel about that, about your kids knowing this kind of stuff that outside of your art, you might not have wanted to tell them.

GRAY: Couple of things -- three things I think about. One is I noticed that throughout the interview, you've been using the word "explain." And I wish that I was doing that. I feel that I'm telling -- I'm reporting and not explaining.

GROSS: (laughs)

GRAY: And the other was that I remember when Renee and I were still talking around and after the break-up, and we were having dialogues and having lunches together. And she said, "I just can't wait till" -- because she says, "when your son is a teenager, when Forrest grows up, and sees your monologues published and sees the early dedications to Renee. And he's going to go, `OK, I want to find out who that Renee is.'"

And I thought, "My God! Renee doesn't know me!" (laughs) After 14 years of living together and working together, she would think that I would, like, not do a monologue about this? Of course, at the time, I also thought it was impossible to do that.

I think it's really, really good to get it out there and to pay attention, to really pay attention to his (INAUDIBLE) Forrest's reactions. He saw "Morning, Noon, and Night." He's a little bit aware of "Slippery Slope," but he sat through the whole production of "Morning, Noon, and Night." And afterwards, slowly things surface, and there's a dialogue.

But I'm very, very careful, and I think this is the only way you can go at it, is that you keep him -- and I really don't know how to do this, as he gets closer to being -- when he gets closer to being a teenager -- but keep him conscious -- you know, keep a dialogue going, where I would answer the question by, you know, saying, "This is how Daddy works. This is what I do. And this is" -- you know. "Hey, would you rather not be here?"

GROSS: Right.

GRAY: "It's not a bad life, Forrest. It is not a bad life."

GROSS: "Then Daddy's -- (laughs) Daddy's -- Daddy's a drama queen. Daddy's"...

GRAY: Yeah, "This is how Daddy makes his living, Forrest. Now -- now, do you want me to do something else? Because we'll be living in quite a different situation." (laughs) "Are you ready to give up the big house and move into an outhouse?"

GROSS: You know, I -- there's something I have to confess, as somebody who's, like, followed your work for -- for so long now, I mean, since the '70s.

GRAY: Right.

GROSS: By the time you're telling your audience about something...

GRAY: Yeah (INAUDIBLE)

GROSS: ... ti's happened a long time ago.

GRAY: Yeah.

GROSS: Right? But to me -- to me it's brand-new, so I'm reading this stuff...

GRAY: OK...

GROSS: ... about, you know, Spaulding Gray and, you know, nuclear family and everything. I'm thinking, "Oh, it's never going to last. He's not that kind of person." And of course, you've been living this life for years and years already.

GRAY: Right. Right.

GROSS: It's just that it's new to me.

GRAY: You know, that -- that's a really good point, that most -- I mean, you -- the audience doesn't realize that. It's really a hypnotic event because I'm a good enough actor to act -- you know, I'm now at a place now where I've created the material. The creative part of me has now made the material. Now I have to act it fresh as though it just happened.

And that is what's happening, so that when people see Theo backstage or around the theater, if he's there with Cathy, they think it's Forrest. And they just can't put it all together. That was during "Slippery Slope." Once now where I talk about Theo and Forrest and Marissa.

But as a friend of mine once said, "The audience thinks they're just turning the corner with you, and you're already down the road." Or as -- you know, it really is a very kind of weird and schizy situation that I have to watch out for, too, lest I think that the monologue is the reality, you know, because we're into just a whole other family dynamic now that is -- requires a completely different response from me. And so to go off and do the monologue is refreshing, in a way, and in the sense of showing an old family album or something.

But it's also not -- ultimately, it won't be vital. The acting is what -- is vital and what saves it and makes it a good show. But ultimately, it won't be vital for me because I will then have to move on and figure out what I'm thinking about by talking about it, and that's how the new monologue comes.

GROSS: I want to thank you very much for talking with us.

GRAY: It's good to talk with you again.

GROSS: Spaulding Gray's new book and monologue are called "Morning, Noon, and Night." He opens at Lincoln Center's Vivian Beaumont Theater November 7th and takes the monologue on the road in February.

I'm Terry Gross, and this is FRESH AIR.

(BREAK)

TO PURCHASE AN AUDIOTAPE OF THIS PIECE, PLEASE CALL 877-21FRESH
Dateline: Terry Gross, Philadelphia, PA
Guest: Spaulding Gray
High: Monologist, actor and writer Spaulding Gray, author of "Morning, Noon, and Night" about being a father and raising a family. Gray's monologues include, "Monster in a Box" about all the distractions that prevented him from completing his novel, "Impossible Vacation," and "Swimming to Cambodia" about filming a movie in Cambodia. His monologue and book "Gray's Anatomy" was about his eye problems, and his adventures in the mainstream and alternative health care industries.
Spec: Spaulding Gray; Families; Media

Please note, this is not the final feed of record

Copy: Content and programming copyright 1999 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1999 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Interview with Spaulding Gray

Show: FRESH AIR
Date: SEPTEMBER 22, 1999
Time: 12:00
Tran: 092202NP.217
Type: FEATURE
Head: Interview with James Redford
Sect: Entertainment
Time: 12:30

This is a rush transcript. This copy may not
be in its final form and may be updated.

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

My guest, James Redford, owes his life to the deaths of two generous strangers, two people who, upon their deaths, became organ donors. Redford had two liver transplants in 1993 after five years of declining health from liver disease.

Now he heads the James Redford Institute for Transplant Awareness, which is dedicated to educating the public about the need for donors. Only 0.5 percent of the people who die each year qualify to be organ donors. An organ can only be harvested from someone who is brain dead but was otherwise is good health.

Twelve people die every day because they're awaiting a transplant and can't get an organ.

Redford is the executive producer of the new documentary about organ donors and recipients called "The Kindness of Strangers." It premieres tomorrow on HBO. Redford grew up with movies. His father is Robert Redford.

James Redford discovered he had liver disease in 1987 when he was moving from Colorado to Chicago to attend graduate school. Before the move, he had a physical.

JAMES REDFORD, "THE KINDNESS OF STRANGERS": There was a curious liver enzyme test, and no one really thought much about it. And I was brought in to do a procedure just to make sure it wasn't the thing that they thought it might be, which was a 2 to 3 percent chance. And when I woke up from the procedure, I had a kind of a whole flank of doctors around my bed with long faces.

And I knew it right then. I had kind of woken up to the wrong end of the odds. And it was told to me at that point that I had about five to 10 years to live with this liver disease, and that transplant would be my only option. And of course at that point in 1987, the public awareness of transplantation was very little, and I think at that point it wasn't being covered by insurance yet, and there was very little known about it.

So for me, I -- when they said that was my only option, I didn't really have much faith in that as being something that could really actually save my life. So I went into a period of sort of, you know, denial on one hand, just sort of thinking, Well, five to 10 years, someone will figure out a cure, or I'll be someone that doesn't progress. Somehow I'll avoid this.

But I didn't avoid it. I tried everything under the sun. But it was inevitable, and it did wind down. After about five years, it -- transplantation was the only option.

GROSS: What stage did you have to reach medically before the doctor said, OK, you need it now, you need the transplant now?

REDFORD: The idea was to sort of watch the symptoms, watch the problems that arise. And they have an idea of, you know, when you have sort of a year to go before you're going to die. And they look at the waiting list, and they -- because they don't want to put you on too early, because transplantation itself is a risky operation. You know, they don't want to -- they want you to be able to enjoy your life as long as you can, because there are no guarantees.

So -- and there's also obviously a scarcity issue and a priority issue that they have to honor ethically. And at that time in '93, I think they were thinking -- I -- at the time I was put on the list, they were thinking I had about a year to go before it.

GROSS: How were you feeling then?

REDFORD: It's a -- liver disease is sort of an insidious disease. It creeps up on you slowly, and you don't really -- you know, you'll have sudden problems. I had abdominal pains a lot. But it's a -- it can also act insidiously, it's slow, kind of creeping lethargy and a wasting away of your strength and your stamina. I had -- you know, at the end there turned jaundiced. I was not feeling well at all.

GROSS: When you found out that you were on the waiting list, and you'd only have a year unless you had the transplant, did you feel that when you were waiting for the transplant, as if you were waiting together to get sicker so that you could get better? You know...

REDFORD: Yes, there's that terrible irony in the whole thing. Where that dynamic actually was most noticeable to me -- and that was the case in a way, which was about six months. But after my first transplant, there was a surgical complication that led to -- the donated organ was compromised. And about a week after the first transplant, it was clear that there was something wrong.

And they were unable to tell what the ramifications of this problem were going to be, but the doctors were not all that encouraging that in the long term it would be a viable organ.

But because of the protocol that they were using at UNMC and still use, and everybody uses, I think, they had to assume that there I was on that given day, I was doing relatively well at that moment, and they had to make an assumption that I was OK and release me from the hospital. And my status dropped back to the beginning, although everybody sort of knew that the problems were probably going to recur, and I would eventually need to be retransplanted.

I had to basically get back in the -- at the end of the line and start over again. And that was exactly what happened. It was a slow process, and I in fact did start to run into more problems. I got very, very ill waiting for the second one.

GROSS: When you get the word that there's a donor, things must happen pretty quickly. Can you give me a sense of what it was like for you the first or the second time, you know, whichever you prefer, when you found out that there was a donor? How much time do you have to assimilate that before you're actually in the operating room?

REDFORD: Well, in my case, the first time I was in my hospital room. It was in the evening. And my wife had gone home to Denver from Omaha to get things in order. We -- she had come with me to the hospital because I was having some trouble, and she'd gone home. We had an 18-month-old boy at the time, so she'd gone home to get some things in order.

But I was alone in my room that night, and sort of hanging out. And the phone rang. And it was a nurse on the line. And she said, "Hi, this is Young, I'm your transplant coordinator. We found a liver for you."

And my first reaction was that it was one of my friends that was calling and playing a joke on me. I just -- you know, it was -- I was totally shocked, that even though we'd been waiting and waiting and waiting and waiting, it -- when the time finally came, it just seemed almost impossible to comprehend. But no, it was very quickly made clear that it was not a joke, that it was happening.

And then there were calls to family members in the middle of the night, people jumping on airplanes to get there as quickly as possible. My wife turned around and flew back immediately. And those six to eight hours were a very reflective period. It was pretty much through the middle of the night on into morning.

And gave me some time to think about things, for sure, think about some things I wanted maybe to, you know, have -- say in writing, which I did. Very contemplative.

GROSS: Were you preparing either a new life or for death, depending on which way it went?

REDFORD: That's right.

GROSS: You say -- you said in an interview someplace that it took you awhile to recognize that your need for a transplant wasn't going to cause someone else to die. Would you elaborate on that thought, that thought that, you know, that our life depends on someone else's death, and what a kind of odd relationship it is to that other person?

REDFORD: It's a very odd relationship, and it -- you know, there is an element of guilt, I think, in all of that. I mean, recipients are really, you know, highly involved with giving back to this cause. And some of that, I think, is a little bit of a guilt in a way that is hard to fully dismiss even though you know that your illness and your situation and your fate, the road you're on this life and the fact that you've got an illness that has resulted in this need has nothing to do with someone in a neighboring state or region that's had a traumatic accident or an aneurysm or something that's led to brain death.

If they're not linked, there is that -- a kind of indefinable connection to it all that stays with you forever. And in fact, for me, as strange as it is, it's actually been a gift in a way, this sort of -- you know, this feeling of indebtedness, because it's just kept me constantly aware of how precious life is. I just don't take it for granted. Not that I don't have my bad days.

GROSS: Yeah, right. (laughs) There's a couple of parents of an organ donor in the movie, and they say something very moving. They say, you know, when you're told that your child is brain dead, you know that what you're really being told is that they're dead. But still, before you say Go ahead and take the organs, you have doubts, like, Well, maybe the doctors are giving up prematurely, because they want the organs.

And the parents just can't help but wonder, Have I truly, really done everything possible to save my child? And I think that must be such a difficult position for the family of someone who is brain dead to say, OK, now, go ahead, you know, we give them up for dead, take the organs.

REDFORD: Absolutely. I mean, I -- you know, you're putting the medical world in the position of calling a shot that's very, very difficult to call. And, you know, I think the people that are in the greatest disadvantage are the ones who arrive at this situation and, say, their child has signed the driver's license or their husband or whoever it is in the family, and they haven't ever confronted this issue or talked about it amongst themselves.

And suddenly, in the middle of what has to be the worst moment in their lives, they're being confronted with this decision. And who is going to really be in a frame of mind to be contemplating a decision that basically involves the well-being of other people, of strangers somewhere else that have nothing to do with your trauma, your crisis?

And in that sense, I think it's a miracle that organ donation happens at all. And it's a real testament to the human capacity for sacrifice and true altruism that this takes place at all. And it's why I have reservations about the notion of sort of, you know, reimbursal or remuneration connected, because I think there's something very -- far more powerful at stake here that's happening when strangers do these things.

GROSS: Yes, in the movie there's two parents of a teenage girl who died in a car accident, and she had asked that her organs be donated in case of death. Now, the father says in the movie that if he didn't know that his daughter had wanted that, he would have opposed donating her organs. He didn't like the idea of his daughter's body being taken apart after death. I think he used the word "desecrated."

And his wife, the girl's mother, says that she wouldn't have tried to convince her husband because their daughter was already dead. In that sense, she was out of the picture. But he would have to live with the decision for the rest of his life.

I was wondering what your reaction was to hearing that.

REDFORD: Well, I -- yes, I think the Kilmers, Kathy and Russ, represent the real spectrum of the anguish of that decision. And I think that you hear it and you see it, and there's no denying these points of view. And I certainly relate to it. I'm a father myself and have two children. And I try and imagine myself making that choice, and I understand all those sort of visceral reactions to this topic.

And I think that's why in the end, you know, you have to think of Megan, and how -- what a beautiful person she was to have thought about this. And...

GROSS: This is their daughter.

REDFORD: ... what a remarkable thing -- The daughter, yes, Megan, who was killed in the car accident. And, you know, clearly it was Megan's impulse, and they honored that. And that's -- but that's what we're talking about in terms of it being a discussion among family members. If it's something that one embraces, it's not a decision that should be kept to oneself or simply signing your driver's license.

That doesn't do it either, by the way. I mean, there's this idea that, Well, I'll sign my driver's license and that'll take care of this. But the decision is left to the loved ones. It's not automatically done according to your driver's license.

GROSS: So even if you say on your license that you want to be an organ donor, it -- if you become brain dead in a car accident, your family still has to sign off on it?

REDFORD: That's right, it's their call. And I think there's something right about that.

GROSS: My guest is James Redford. He's the executive producer of the documentary "The Kindness of Strangers," about organ donors and recipients. It premieres tomorrow on HBO. We'll talk more after a break.

This is FRESH AIR.

(BREAK)

GROSS: My guest is James Redford. Six years ago he had two liver transplants. Now he's produced a new documentary about organ donors and recipients.

Now, you had two liver transplants because the firs tone didn't take. Do you know who the livers came from, and how they died?

REDFORD: Well, I'm aware that the first one was a -- that came to me was a result of a brain aneurysm in a young male. The second one was a result of an accident. The conditions are left intentionally vague, particularly at the onset. And then, as you go on, it becomes a little bit more specific when, for instance -- you know, when I came out of my experience, because I very much wanted to write the donor families and express, obviously, my gratitude.

And the coordinators that handled -- there's -- the transplant coordinators handle this, you know, exchange of information between donor families and recipients. And initially, it's sort of -- they take out all of the personal references that could create a situation where identification, specific identities, between people could be made, until it's determined that both sides of the equation, the recipients and the donor families, want to have an interaction.

And at that time, more personal information is given, and the connection is made. In my case, I was interested in that connection, but in my -- the responses to my letters from the donor families, I think, was similar in sort of sensibility to the Kilmers in our film, which is, We did it, we honored our child's decision to support this thing called organ donation, and, you know, we're glad we honored that, but we're moving on with our life, and, you know, why don't you do the same?

So I've never had that contact with the donor families that some patients do have.

GROSS: One of the organ donations didn't take. There was a problem with the liver. What kind of message did you want to send to that family? You couldn't send the message, you know, Your loved one's organ saved my life, because it didn't save your life. It almost did, but it didn't.

REDFORD: Well, I'll tell you how I feel about that. I -- you know, I don't know if this is sort of rationalization that we all, you know, dive into in this situation, but the truth is, is that I went for four months with that liver, and it became a part of me even though it was a problem. And I think -- I look back on that and I think, you know, the way liver disease works, it's just so hard to know what would have happened.

The fact is, is that, you know, during that time, it was mine, and it kept me alive for four more months. Who knows how long I would have waited or what would have happened, or if there -- a different organ wouldn't have had a different problem? So, you know, I never really saw it as just an out-and-out failure. I saw it as sort of a step along a very difficult journey for me.

And I certainly never entertained the idea of, you know, writing a letter to the family and giving them the specifics of that. I didn't think that was fair to them.

GROSS: After a transplant, you have to be very careful about your body rejecting the transplanted organ. What kind of medicine have you been on to prevent rejection?

REDFORD: Well, I'm on a medication called cyclosporin, which really revolutionized transplantation in the early to mid-'80s. It was originally a medication that was researched, I think, by a young Japanese research specialist who was looking at a cancer-fighting drug, and he stumbled on a mold spore that -- not only did it not work, but it was killing mice like crazy. They were coming down with all kinds of tumors.

So it was obviously shelved. And then somewhere along the line, someone said, Hey, wait a minute, the immune system and cancer are inextricably linked, and if this drug was, you know, promoting tumor growth, perhaps it was an immunosuppressant behavior that was happening with this drug.

So they started to experiment with this spore, and lo and behold, it did succeed in suppressing the immune system in a manner that almost, you know, overnight shot up survival rates from transplantation from the 30 to 40 percent range up into the 80 percent range. And it was a revolution in the field, and I'm certainly glad that this was my fate to have to be transplanted, that it happened when it did.

GROSS: So the cyclosporin lowers your immune system, yes?

REDFORD: That's right.

GROSS: It weakens your immune system, which means that you're more vulnerable to other bugs of every sort, which isn't a good thing if you're a hypochondriac. (laughs)

REDFORD: No, it isn't. I tell you, you know, if -- I -- it took me a while, you know, to -- when I came out of it to go into shopping malls or theaters, you'd sort of sit there thinking, Oh, boy, what am I picking up? you know.

GROSS: Yes.

REDFORD: (INAUDIBLE)...

GROSS: Well, it's a real fear. I mean...

REDFORD: Oh, certainly, certainly. I've been pleasantly surprised, in my case, that I haven't really noticed a whole real difference. I think when I pick up colds and things, they tend to linger maybe a little longer. But the upside of that is, they never hit quite as hard as they used to, because the immune system isn't knocking me out.

So it's -- and then, you know, on a more serious note, there are certain issues you have to sort of, you know, hope that don't come up, involving increased cancer risks and certain infections that can become life-threatening. If I'm sitting here looking for a piece of wood to knock on, I've been lucky that way.

GROSS: My guest is James Redford. He's the executive producer of the documentary "The Kindness of Strangers," about organ donors and recipients. It premieres tomorrow on HBO.

We'll talk more after a break. This is FRESH AIR.

(BREAK)

GROSS: My guest is James Redford. Six years ago, he had two liver transplants. Now he's produced a new documentary about organ donors and recipients.

Does where you live at all affect your chances of getting an organ donated? In other words, if you're in a more populated area, do your chances of getting an organ donation go up?

REDFORD: Well, it's sort of like that. The speed at -- you know, the -- approaching the speed of light, that strange thing with Einstein where you have to -- you know, the faster you go, the more mass you need to make it go faster, and you never quite catch up, you know, it's similar in this regard, in that you have a higher population base, but you also have a higher patient load. And in the larger city areas, you often have larger transplant centers that are more renowned that have much longer lists, because people have gone there, like I did, wanting to see the reputation.

And so as the population goes up and the amount of donation taking place goes up, you also see the amount of patients waiting going up.

But there are clearly, you know, discrepancies in these various regions, and some people do go to more remote areas where, for instance, a new program is starting up and they don't have a patient load that, say, in Nebraska or UCLA or UCSF has. And they're willing to sort of dive in there with the new program because they can't afford to or do not want to chance the wait.

So there is a -- there is a -- you know, there is a discrepancy in this wait, and geographically. There is that.

GROSS: You're now running an institute that's supposed to be an educational institute about organ transplantation, you know, plus your major new documentary about it. And I know through this work you're in touch with a lot of doctors who know the state of the art medicine. From what you know, what do you see as the future in the near future of organ transplant medicine?

REDFORD: I think the hope is that there can be sort of these cell line -- the cell line research, which is sort of the -- you know, taking the cells and -- of tissues, the DNA, and growing them outwards, the tissues from various organs, and hopefully maybe (INAUDIBLE) through, you know, fetal cell research or other cell research, being able to grow in vitro these organs, so that we're not reliant on this terrible dilemma of the current organ donation dynamic. No one wants this, you know.

And it's -- that's certainly a hope. I think there are other promising things on the horizon, particularly in the case of livers, which is the split liver operation that seems to be becoming more prominent right now, in which someone can go in and donate the -- I think the right or the left lobe, I'm not -- again, my medical awareness dims here. But one of the lobes can be separated and donated into a recipient, and then within months it grows to normal size, and that's something that may ease things.

But I think the other area that there may be advancement is in the area of immunosuppressants, in terms of -- right now, you're basically -- it's a very kind of a blanket approach to immunosuppression in which the entire immune system is suppressed for the sake of keeping the organ. Perhaps in the future they'll figure out ways to suppress certain segments of the immune system related to rejection while allowing other segments to remain fully functioning.

GROSS: What's the prospect now for someone like you who has an organ transplant? What do the doctors tell you about, you know, longevity?

REDFORD: Well, I appreciate the sort of philosophy at Nebraska, which is sort of, Assume the best. And I -- but it took me awhile to get there. The -- it -- the future of any recipient is sort of the great unknown. There's the sense of being on the frontier of science. It's -- you know, it hasn't been going on long enough to really have any long-term clinical studies about what the 20-year, 30-year prognosis is. So there's no real way to know.

And initially, the first six months after my transplant, that was something I really wrestled with and struggled with mightily, in fact, What does this all mean? Where am I? You know, what can I really anticipate here? The unknown was sort of daunting. And then a funny thing happened, that same sense of unknown became the gift for me, because I realized that in that unknown was a kind of a responsibility to celebrate every day, much the way you hear some cancer patients talk.

And it's never really left me, you know, and I don't take anything for granted, really. I mean, as I said before, I certainly -- I can have my occasional fits of road rage, like anyone else, but, you know, I have a real sense that each day is a gift, and, you know, I'm taking medicine twice a day, so that -- it never is far from my mind. And I just have to take each day as it comes and expect the best. Because I think that's the best way to look at it.

GROSS: Well, Jamie Redford, I want to thank you very much for talking with us.

REDFORD: It's been a pleasure, thank you.

GROSS: James Redford is the founder of the James Redford Institute for Transplant Awareness and the executive producer of the new documentary about organ donors and recipients called "The Kindness of Strangers." The film was directed by Maro Trimeyov (ph). It premieres tomorrow night on HBO.

I'm Terry Gross.

TO PURCHASE AN AUDIOTAPE OF THIS PIECE, PLEASE CALL 877-21FRESH
Dateline: Terry Gross, Philadelphia, PA
Guest: James Redford
High: James Redford, executive producer of the new HBO documentary, "The Kindness of Strangers," a film telling the story of four organ transplant patients, the donors and their families. Redford, the son of Robert Redford, underwent two liver transplants himself.
Spec: Entertainment; Radio and Television; Health and Medicine

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End-Story: Interview with James Redford
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