StoryCorps at SHC: Barbara Kivowitz and Richard Weissberg

Barbara Kirowitz (BK): I didn't have any hope and it reached the point where I didn't want to have any hope because, if I let myself hope, the disappointment I would feel when the next specialist couldn't fix me, would even be greater. The fall would be greater if I had climbed up the hope mountain a little bit.

Richard Weissberg (RW): Yeah, hope was my job.

BK: Hope was your job. And (laughing) I don't understand how you did that job. And there would be times when I would, I would lean against Richard in tears and just say to him, "Tell me about the hope."

RW: How did it start?

BK: It really started with a bang. There was no slow build-up. It felt as if I had a bucketload of broken glass just sloshing around in my abdomen, and whenever I moved, the glass would shift around and- and the sharp edges would pierce me. And for the first couple of years, we were, you and I were just wandering in the wilderness, shouting for help. I have to say, Richard, you- you were an extraordinary caregiver, a heroic caregiver. You accompanied me every step along the way.

RW: I remember many hours of misery as you tried to cope with the pain, walking in our attic, well, our attic bedroom. And you were doing badly, but you were also, at the same time realizing, okay, you were in the midst of the devil you know and for the next few hours you were going to be... you were, you were going to get by. And I remember your, even though you were miserable, you sent me away. You... basically, you said, "I'm okay for a few hours. Go have a beer with a friend. Go to your favorite café and hang out. Go do something for yourself." And I'd say, "No way." And you said, "Well, it's in my interest. I need you and if you don't take care of yourself, then you'll be useless to both of us." And that became our critical success factor, if you will, on how we did make it as a team, because we didn't let me turn to toast.

BK: There was one point where we were both in the attic upstairs and I became a puddle on the floor. And I was just crying and sometimes just kind of screaming into a pillow, and I was just in a, in a altered place and state. And you were by my side and you tried to reach me. You kept trying to reach me and you couldn't. And you got scared and you said to me, "Come back. Come back if you can. Just give me... tell me that you're still okay, that you're still here." And then I remember looking at you and seeing the pain on your face and the fear on your face... and you even started crying a little, yourself. Seeing your... your- your agony on- on top of my own agony, it trumped mine and I was able to break out of the state that I was in and to put my arms around you and hold you while you cried. And comfort you while you cried. That returned to me a sense of myself that I thought was gone forever. It- it helped me to realize that, even though I am suffering in this way, I'm still your sweetheart, you know? I'm still your partner. You're still my partner. We still have a profoundly wonderful history and a profoundly wonderful bond and love. And that- that's there no matter what. I didn't want life, I didn't want sweetness because it reminded me of how much... how far away I was from all that. But one thing, I remember that we would, we would sort of joke and even cry about sometimes is, we- we kind of said that we would get to Paris someday. That Paris became our, you know, our- our icon of possibility. And sometimes I could talk about Paris and a lot of times I just had to pretend it didn't exist. But we did get to Paris.

RW: We did.

BK: We got to Paris. And that coffee was really sweet.

Produced by Stanford Health Care with interviews recorded in collaboration with StoryCorps, a national nonprofit whose mission is to preserve and share humanity's stories in order to build connections between people and create a more just and compassionate world www.storycorps.org

Sound Editor: Carolina Correa

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