Life After Diagnosis

Question: What was your experience of living with your husband after his diagnosis?

Kay Redfield Jamison: I think that one of the many advantages of death accruing over a long period of time, in the case of my husband and with many people who have cancer or other chronic illnesses, is that you do have time to meet a lot of other people who are going through similar situations and one of the great delights of our life actually was sitting around in labs waiting for the results of tests and talking to other people who were waiting to find out whether their cancer numbers were going in the right direction or not.

I think it makes you very aware of just the acute pain and anxiety that people do go through. What I had not been aware of and what I was very interested in writing about was how extraordinary grief is. I mean people talk about grief as if it's kind of an unremittingly awful thing, and it is. It is painful, but it's a very, very interesting sort of thing to go through and it really helps you out. At the end of the day, it gets you through because you have to reform your relationship and you have to figure out a way of getting to the future. And grief does that. I was interested in the difference between that and depression because I had gone through depression and I thought that I might well get depressed again after Richard's death and I didn't. The similarities were interesting but the differences were to me far more interesting.

Question: Is it possible to live a full life after a fatal diagnosis?

Kay Redfield Jamison: Well I think first of all I think most people do in a funny sort of way. I think one of the things that you're not prepared for, I was not prepared for, was how exhausting it is to be the person -- I was the only person who took care of my husband and I loved being able to spend time with him and so forth. But it was tiring and I'm like a high voltage, high energy person and it was exhausting. I think that that's a really unfortunate side of that, but we counted ourselves blessed to have the time together actually. When you look at people who lose someone through a heart attack or suicide or an accident and they haven't the time to spend, we were very blessed in that respect and I don't think either of us ever took that for granted. And also we both were really busy, Richard in particular was well-known scientist and was always going off to meetings and giving papers and so forth. We both were zipping around like crazed weasels. At some point we just couldn't and didn't and wouldn't do that anymore and as a result we had just a lot of time to sit around and read together and talk and go out to movies and be with friends. It's not like he was sick all the time; just gradually make incremental changes in how he was able to get around.

But it was, it was for the most part delightful. We actually had fun. You don't lose the person; that's not true for people who have dementing illnesses or people who progressively really get so weak. But in our case, we were lucky he was able to enjoy life actually until very near the end.

Question: What was the last day with your husband like?

Kay Redfield Jamison: I think we both knew that it wasn't going to be very long before he died; that was clear from all the scans and his general deteriorating health, but we didn't have a sense that it was going to be that soon. We did. We had a wonderful last day; we had a room where we just sat and read. I used to -- he was very dyslexic and so I used to read to him. We just did. We talked and we had very meaningful talk about -- he was a scientist and he was concerned about how he would never understand the science of the disease schizophrenia that he had studied all of his life. He would never know what caused it, he would never know the treatments that came out, he'd never know the genetics of it. And this was for a scientist who's very curious, very painful for him and it was as close to seeing him very upset about things as I'd seen him, and yet after talking about it and so forth and talking about the nature of science and medicine.

And somehow it came back to being his usual actually quiet, optimistic self and it was a wonderful time we had. Yeah. I wouldn't trade that for anything in the world.

Question: Were you able to say goodbye?

Kay Redfield Jamison: Not really. Not anything other than a sort of in a symbolic sense because he got very sick, very fast and was in the ICU and unconscious, so there was no way of saying good-bye to him. I said certainly said good night to him the last night that he was in the hospital, but I didn't think he was going to die and he didn't think he was going to die. So there was no kind of final thing. When he did die and when I had the—all of life support removed from him, yeah, those kind of incredible private moments that you don't know about until you go through them of saying that kind of final farewell to someone you've been with for 20 years. It's—but I think again—and it was awful, it was painful and sad, but it was also the sort of thing—there is an intimacy to dying that he and I used to talk about. That you just don't know until you're with somebody. You have this incredible closeness and vulnerability and sense of whether or not there are going to be arguments or discussions here that are fought, we are going to take care of one another.

Recorded On: September 30, 2009

Kay Redfield Jamison discusses how she and her late husband found profound delight in his final years as well as the commanding power of the grieving process.

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