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Episode One: Grief and Healing

Air Date: September 10, 2000

Introduction to With Eyes Open

BILL MOYERS, HOST, ON OUR OWN TERMS: I'm sure On Our Own Terms has evoked in you strong feelings and associations. It certainly has in me. I wouldn't be surprised if you sense the need to confront some critical questions. So for the next four nights, our program will be followed by honest discussions about caregiving, grief, hard choices and death as spiritual transfiguration. Ray Suarez will host these conversations, inviting each of us to look at the end of life, With Eyes Open.

Introduction to Grief and Healing

RAY SUAREZ, HOST, WITH EYES OPEN: Good evening, I’m Ray Suarez. Tonight in this room there will be a conversation much like the one you might be having in your own home right now. Seven people, sorting through their experiences of loss. Wendy and Pervanche, have both lost parents in the last year. Cathy lost her husband Romeo very suddenly to cancer. Joan is caring for her son, who has AIDS, Joyce is a single mother with two teenagers, she and Jim are battling stage four cancer, Paul is living with Hepatitis C. They’re lead by a man you just met in On Our Own Terms, hospice founder Frank Ostaseski, in this honest exploration of grief and healing.

A Conversation about Grief and Healing

FRANK OSTASESKI, MODERATOR: This evening, I want us to have an honest discussion about dying and about living with illness and about the grief that accompanies losses. And I hope that we can talk about both the hardships and the beauty that characterize these experiences. And I also hope that along the way we can find ourselves welcoming everything and pushing away nothing. I know that in this country we tend to look on death as just a medical event but it’s much more than that, isn’t it? It's about our relationships to ourselves and to each other, and to whatever image of ultimate kindness we hold. So tonight I want us to talk heart to heart. To recognize that it’s an absurd gamble to wait until the moment of our dying to begin to learn what it has to teach us. So let's see if we can find out how it’s possible to live fully in the light of dying. I want to talk to Joyce. You're in a situation where you have cancer. And you’re the mom.

JOYCE MITA: Right.

FRANK OSTASESKI: What really scares you about this illness?

JOYCE MITA: That I have no idea where it's going to end. Am I going to get a few more days, a few more years? I’m always looking for a miracle. I'm in hospice care now and they think of it as a six-month program. I don’t buy that, but I like the services. I think what keeps me going are my children. My oldest son Ryan, he's now nineteen. One night he said to me, you know, Ally and I, we are going to be ok. And I said to him, well what about me Ryan? And he said, mom, you will be ok too. And we just cried. I couldn't believe how much faith he had. And I think that probably, hopefully, will become internal to me, so that as I face death, I won't be so afraid of the unknown.

FRANK OSTASESKI: That's it, isn’t it, this fear of the unknown: that we don’t know what is going to happen. And so sometimes we fill it with really scary stories. Paul, you're living with this. You’re living with this ambiguity all the time.

PAUL MCVETTY: In fact I sit and listen to you guys and I find myself being jealous a little bit. Now this might sound very strange, very bizarre, but just the idea of being treated for my illness, there really is no treatment except a new liver. I've been on the transplant list now for three years.

FRANK OSTASESKI: Your time hasn't come yet.

PAUL MCVETTY: My time has not come yet and I've been waiting, and waiting, and waiting, and waiting.

FRANK OSTASESKI: All right, I want to ask Jim. You got diagnosed with cancer just recently.

JIM LOCKE: That’s true. Paul and Joyce and myself, of the group here, we’re the only ones dealing with imminent death. And we’re fighting it. But at times you just say, how do you beat this devil? How do you beat this alien force that has invaded your body? And you treat it almost as a person. Treat it as if it had a personality.

FRANK OSTASESKI: Something that's inhabiting your body.

JIM LOCKE: Yeah. It’s no part of my body. It's come in and it is wreaking havoc on my body.

FRANK OSTASESKI: Moving here and there.

JIM LOCKE: Yeah. And it makes you mad. Makes you angry.

FRANK OSTASESKI: Like you have no control.

JIM LOCKE: Exactly.

FRANK OSTASESKI: I want to come back to this.

JIM LOCKE: Okay. That’s fine.

FRANK OSTASESKI: Because this is really important to talk about. But, there's something that you just triggered that made me think of Joni. How did you get the news that your son Bo had AIDS?

JOAN AUGUST: He walked in the house and he looked at his dad and I and he said, I'm gay, I have AIDS, and I'll probably die in six months. But he did say to me, he said mom, you know I don't believe in dying, he said I believe in living until the moment that we die. And I knew when he said that, that we were in the same ballpark. And we were going to do this thing up until that moment, with as much that’s life giving as possible.

FRANK OSTASESKI: I think often we imagine grief as just this momentous sadness. But in my experience it’s a little subtler than that. That grief isn't just one emotion but may be a whole constellation of feelings. Our grief is also our anger, and our fear. And sometimes it’s shame. Cathy what did it just feel like to grieve?

CATHY CHIN: I think that I didn't know how to live by myself. Because I was so, part of my identity was Romeo. I mean we were together. We were one, at least I thought we were one. How can I still be here when Romeo died? I remember that moment when the doctor said that I can go in and say good-bye to Rome. I remember having to hold on to the wall to walk through the room because I couldn't stand. And I don't think I ever felt like I was connected with anything else or anyone else. I think for years after that.

FRANK OSTASESKI: I’m going to pause there for a moment. And I want to talk to Wendy. Both your mom and your dad died in a very short span of time. But it was your dad's death that had such a powerful affect on you.

WENDY JOHNSON: Dad had a really rare neurological disease that was taking him down. Sometimes I think of a raptor grabbing you by the throat and just dragging you down. He lost his ability to speak. And he loved to cook, and eat, he was a great cook. He lost his ability to eat, to swallow. He had a tube in his stomach. And eventually he lost his ability to swallow and to breathe. He'd wake up at night not able breathe. Then he took his life on December 7. So, I was pissed off. I really was. What a dirty trick. God.

FRANK OSTASESKI: Sure.

WENDY JOHNSON: Everybody wondered when my stepmother told me, that dad, she said dad took his life. I went dead. I went frozen. And I couldn't believe it because we were tight enough family, strong enough family, we could've been around the bedside, we could've been this, we could've been that. We didn’t get to make a bargain with the good old good death.

FRANK OSTASESKI: And other people are pretty uncomfortable with our grief.

WENDY JOHNSON: Or they’ve got it all worked out, they want to reassure you. Those are the worst.

FRANK OSTASESKI: They want to give you advice?

WENDY JOHNSON: They want to help you. They want to help you.

PERVANCHE MCGEE: You mean the people that used to be our friends?

FRANK OSTASESKI: Some friendships fall by the wayside. How about you Jim this anger, does it ring a bell for you?

JIM LOCKE: My anger is essentially this obscene thing that’s attacking me, that makes me mad, makes me mad that I can’t deal with it.

FRANK OSTASESKI: Can’t get it out of your body?

JIM LOCKE: My anger often is reflected with my wife. She’ll do something and, it makes me mad, beyond what would be normal.

FRANK OSTASESKI: What kinds of things?

JIM LOCKE: Maybe a glass wasn’t washed, well why wasn’t it washed? You reach out and you strike at a loved one because what else can you do? You’re just, but you’re angry, yeah, you’re angry. In my case I’m angry because I can’t do things I used to do. This is the first disease that I’m not recovering from.

FRANK OSTASESKI: How about when people say to you Cathy, you know it’s been six months, its time to get on with your life.

CATHY CHIN: I thought that there was something terribly wrong with me. I thought that after a little while that I'm supposed to be feeling better. Everybody kept on telling me, that I’ll be ok. You're young. You're going to be ok. All you need is a dog or a cat.

PERVANCHE MCGEE: It's a really lonely place because you're at your most vulnerable and in my situation, I found that I was having to steel myself against all the well-meaning comments that really just served to piss me off. And people telling me what I should and shouldn't be doing, what I should and shouldn't be feeling. And I need to feel vulnerable and I can't. I’m just like this waiting for the next assault. It’s such a dichotomy. You don't know what to do.

JOAN AUGUST: I couldn't do what I'm doing without the support that I have. I go to a meditation group once a week. Then I have a woman that I've contracted with, and the only thing that the goal of the contract, is that I stay a healthy caregiver. Because I knew that this disease would overwhelm me.

FRANK OSTASESKI: And what helped in this time? What really helps at this time? Is there anything that helps?

CATHY CHIN: It's being connected with people. It’s being heard. It’s being seen. It’s being not judged.

FRANK OSTASESKI: What were some of the things in that moment that you wanted to say to people, that you didn't feel they could hear?

CATHY CHIN: That I just wanted to die. I couldn't say that to anybody because I was afraid that I could see the fear in other people.

PERVANCHE MCGEE: I didn’t want to die, but I felt like I was dying. I felt like this was such a mortal wound, how could I live? And I had to just say it aloud to myself, I don't want to die, I don't want to die.

FRANK OSTASESKI: But part of the healing is feeling the pain.

PERVANCHE MCGEE: Yeah.

FRANK OSTASESKI: Some people have said that in dealing with illness or in loss that it can either turn our hearts to stone or tear them wide open.

WENDY JOHNSON: Or both.

FRANK OSTASESKI: Or both. Right.

WENDY JOHNSON: You know, feeling like, what a gift I had, to be so loved and trusted and believed in, and to have my family around me now. But, God, does it hurt, at the same time. It's double. It's double. It's like the front and the backside of the hand. One side slaps you and the other side leads you on.

PERVANCHE MCGEE: I find that I don't have much tolerance for things that aren't meaningful to me. I don't have time for fluff, as I call it, from people, because my time is precious. I know how fleeting life is, and I want quality. I want hugs; I want kisses; I want someone to listen to me and not give advice. I just want somebody to be there.

FRANK OSTASESKI: So, there's a way, that you're telling me, that this is waking you up in your life.

PERVANCHE MCGEE: Right.

FRANK OSTASESKI: How?

PERVANCHE MCGEE: And if I can't have that, it's like move on and go be with some other fluffy person. It's not me.

FRANK OSTASESKI: So, you want sincerity, you want genuineness and you want to wake up to life.

PERVANCHE MCGEE: You want something that feels.

WENDY JOHNSON: Because you do wake up to life when someone you love dies. It's the mystery, the paradox. You do. You're more alive when someone you love dies.

FRANK OSTASESKI: Joyce, how about you? Where are the gifts in this? Are there any gifts in this? That's a bold question to ask someone with cancer, but are there any gifts in this?

JOYCE MITA: I'm planting a little healing garden for myself. And it's the first time I could get anything to grow, because I never had the patience for that. So to sit there and water seeds twice a day at the beginning, that takes a lot of patience. And sixty days later, I have faith, because something actually popped up.

FRANK OSTASESKI: There's a kind of ambiguity that we we’ve been talking about with illness, though, especially those of you that are living with life-threatening illness. A friend of mine, when he had AIDS, it was a big question for him about whether he should buy a TV or not. He wanted to get this TV, but he wasn't sure if he was really going to get his money's worth out of it; and should he buy the five-year warranty or the seven-year warranty? This was a big question for this guy. I wonder about that. How do you keep investing in life when you know that it might be shorter than you first imagined?

JIM LOCKE: Just buy a cheap model.

FRANK OSTASESKI: Buy a cheaper model TV. Sure.

JOYCE MITA: I like to think, invest in it, because then you're going to live out the warranty.

PAUL MCVETTY: I like that phrase that you used, Joyce, investing, in life. It was a huge question for us, adopting our daughter. There's so much uncertainty about my health and where this is going to end up that we had to think long and hard about it. For us, my wife and I it was really just, we decided to choose life. It's been a wonderful, transformative experience.

FRANK OSTASESKI: How can you say that about having hepatitis?

PAUL MCVETTY: Let's put it this way, I'm not thrilled about it, let's be clear about that. I would not have chosen this particular road for myself, but since it is mine, I'll deal with what I have to. I had a lot of mistrust of the world and people. And I think how hepatitis has helped me is that I've come in contact with so many people who have showed me another side of humanity, a kindness, the love, the attention. And in a sense, they're loving me back into loving myself, to being a more trusting, open, alive person, if you will.

FRANK OSTASESKI: Jim, it's hard to maybe even think about this.

JIM LOCKE: I think if it were my last day out on this veil of tears, I would hope that I would find the courage that I'm going to need to take on this battle. Because it's something I've never been tested before. I haven’t been in battlefield conditions, so my courage is being tested in this, in this battle with this cancer. I hope I find it. Hope I have it. I hope I'm the man to stand up to it.

FRANK OSTASESKI: Suppose it wasn't a battle?

JIM LOCKE: It is a battle. Yes, it is, quite pure and simple, it's a battle. It's the white hats against the black hats.

FRANK OSTASESKI: And if you die, does this mean you lost?

JIM LOCKE: Yeah. That's what the cancer wants me to do.

FRANK OSTASESKI: Do you want to give over to that?

JIM LOCKE: No. That's why I'm gonna fight it.

JOYCE MITA: One thing about what Jim said, at this point, I'm not giving up, but I am trying to make peace with my cancer. And I'm wondering if maybe we could coexist for a little bit longer and that I really could have quantity, as well as quality. So, I think I still have hope, but I'm letting go of some things. And I've even said, if it really gets tough for me, will you let me go? And they will. I know that.

FRANK OSTASESKI: What do you want at the moment of your dying?

JOYCE MITA: I want them both there. I want to definitely be in the experience. I don't want to be loaded with morphine, and I don't know what's going on.

FRANK OSTASESKI: You want to be able to make your own choices.

JOYCE MITA: I'd have to. It would have to be so consistent with my living.

Fireside Letters

FRANK OSTASESKI: Sometimes, when we encounter death, whether it's our own dying or the dying of someone we love, we find a need to say things, to express what's most essential in our life. And I often find that that's often quite simple. And we're going to take a moment just to write, just four lines. Think about these people as if they were here with you, and you had just these four lines to write to them. And then, what's going to happen is, after this we're going to do a little ritual by the fire. We're going to stand there, we're going to read these four lines, and then place these cards in the fire.

JOYCE MITA: I feel at peace, now. I will miss your human touch, your kisses and your hugs, and the times I will physically miss, your wedding, your children's births.

PAUL MCVETTY: Sweetheart, the thing that I want to say to you is, please take care of our daughter, and please tell her who I was and that I loved her very much.

PERVANCHE MCGEE: Hi, Mom, it's me. I love you and I miss you. And what I most want to ask you for, I want to ask you to please return the remote control, because I know you took it.

JOAN AUGUST: You have been my buddy, my teacher, my comic relief, my dancing partner, and always my joy.

JIM LOCKE: My dearest Mary, each day is a gift. You are my most precious gift. If hugs were sustenance, you would starve. Tim and Lisa, I ration my love, please understand it's not intentional. I so love you, all of you.

WENDY JOHNSON: Dad, what I feel now is that, I finally feel that you're here. What I want to say to you though, is that I do feel you're free, and the choice you made is your choice, and it was courageous. And it has taken me a long time to really feel that and be able to say it.

CATHY CHIN: Can you believe it? Do you know what I'd like to say to you? I finally chose to live.

FRANK OSTASESKI: This is our common ground. This grief we're so busy trying to manage, it's the stream that flows through our lives, and joins us to one another. Our hearts are soft muscles: they heal. Thank you.

EVERYONE: Thank you.

Major funding is provided by The James Irvine Foundation with additional support from the Wallace Alexander Gerbode Foundation.

©2000 KQED, Inc.


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