My friend and colleague, Charlie Collier, died this summer on August 2nd. It was not unexpected, but just the same, news of his passing left a deep sadness and an emptiness.
Ten years ago, Charlie was diagnosed with Alzheimer’s, while he was still in the very early stage of the disease. When he shared the news with me, he followed it up with the firm intention of dealing openly and directly with the future, whatever challenges it would bring.
The exact language he used was “I want to ‘lean in’ to this part of my life; to live it fully and not be fearful of the future.” Interesting that after Charlie used the phrase “lean in”, I began to hear it more often, most notably from Sheryl Sandberg in her bestselling book, Lean In, about women and leadership.
It was Charlie’s shaky voice, however, that I will never forget as he discussed his bleak diagnosis with me. He repeated his desire to "lean in" to his life no matter what. I asked him what that meant to him. Then my courageous friend came up with the idea of an interview.
He wanted me to help him explore what this diagnosis meant for him and his family. He thought an interview would help him think more clearly about his life and specifically how he might maneuver going forward. Perhaps it might help others in the same situation.
For our taped discussion, he chose the Harvard Club with his Harvard colleagues in attendance. After it was over, Charlie admitted that it was the hardest interview he had ever done. “Likewise,” I told him. I had worked hard to structure the conversation so that Charlie could communicate what he wanted to say without triggering too much emotion. His summation of the experience was pure Charlie. “While it was hard and sad,” he said, “it’s just life!”
Clearly, it was an enormous challenge to be so open and so vulnerable in front of that particular audience that day. But Charlie was a great teacher and a fearless one. The video of that interview is a testament to what he taught, a legacy not soon forgotten.
Below the video is a transcript of the discussion.
Your thoughts and comments are welcome.
--Photo Credit: Suzanne Kreiter/Boston Globe--
Charles Collier: Death as a family conversation, I've been thinking about this in my life. I have ... and let me just read a piece, my getting clear, that as I sat with other families, including my own, the last 15 years, the ultimate conversation of death arises.
I have been thinking about how do I respond to people who have cancer and are dying, and what do I say? And secondly, what do I say when I hear that someone has died? So, there are two differences there. This has come up in my thinking and my anxiety, which I'll tell you about, in the last few years. Number one, a number of my friends have died in their late 50s, early 60s, and, of course, my father died two years ago. And so, there are other important people in my friendships, as well as important people who are Harvard alumni, and then they die, or their spouse dies, and how do I respond to them in a effective way? I believe what everybody says is I'm sorry for your loss, and I'm looking for something more ... not more important, but more, you know the word ... Meaningful, in a more meaning filled way to talk, or send a letter, or talk, even better, of people who have died or are dying, and how do I figure that out?
Kathy Wiseman: So, in order to structure this conversation, which is not an easy one, or light one, at the end of the long day, I thought I would ask Charlie some questions to help his thinking be clear on it, and then ask you to speak to me with either your suggestions on how you've done it, or questions you have of Charlie. In other words, Charlie will talk, and then I'll ask you to speak to me, and I'll record them, and he'll respond. I'm doing this because it's the nature of this emotional subject, and in order to get our thinking crisp and clear, and to be able to hear each other, I need to help myself to manage this conversation this way. So, let me start with some questions, all right?
Charles Collier: All right, and then ... but you're going to let me do a shot at putting the whole thing out.
Kathy Wiseman: Put your whole thing out.
Charles Collier: The whole thing out. So, I've been thinking about this question I just asked you all, and then I was diagnosed two years ago as an ... I have non-Alzheimer's dementia, and that's what I'm living with now. A couple things I say, I feel great, I'm working, and I'm having fun, and I'm doing hopefully good work, and I am sticking with family systems theory all the way around my work and my ... But now it's ... I'm up against it all. I'm up against a lot, and a couple things that I'm going to see if I can ... And these are random, but I ... After going for the postgraduate course I've tried my very best to manage myself, manage and lessen the anxiety, but with the death of my father and my illness, has made me more anxious and more intensity than I've had in the past. And so, I'm living with more intensity, and more anxiety, and part of the anxiety is what's ... is the waiting until I can't function. And I'll have, as you know, a lot of people who have Alzheimer's, there will be time, I've been told, that I won't be able to function and I'll still have four to five years to live. So, I'm worried about that, because I can't touch it or see it. I am worried about my sons and my wife at that point. But I'm positive, in some cases ... That's the first I've ever said that. We are all dealt a hand of cards in our life is how I react to it, and I'm just doing everything I can, doing ... I had a good experience last week when I read a book called, Companioning with the Bereaved. As a minister in Colorado, and the net of his book is talking about what do you do? And he said ... What he says is we don't try to fix people, this is people who are grieving, you don't try to fix them, you don't tell them it's time to get over it. All these things that Americans want to do, because they don't want to think about it. And so, he says the best practice, in my view, is to be a companion, to be there for the silence, be there for the ... Just be there as a gift, and bear witness to their grief while not telling him what to do or what to think. Just acknowledge what they are up against. And then, so, I'm thinking about that as what I should do with others, and try to ... and what do I want others to react to me. So, this could go for many hours if we really dug into this, but let's have a little conversation.
Kathy Wiseman: Let me ask you a couple questions and then you're asking for feedback about what to do with others, and then kind of ideas about relating to you. So, why did you want to share this information today with this group of people? Do you know?
Charles Collier: You said it would be emotional, now it's me. I thought I wouldn't do this. Anyway, I think because I want to try to do the best I can.
Kathy Wiseman: More people knowing in ... Is this a coming out? Well I ... You know What do you ... I mean, what's your thought? You really wanted to do this.
Charles Collier: I wanted to do it because I want to lean in on it. I want to lean in on it, and ... Thank you. Because if I can, that may be useful for others.
Kathy Wiseman: Let me take questions, and then you listen. I'll write them down and you can answer them. So, questions or comments to Charlie, or ... Let's do questions first. Questions to Charlie.
Speaker 1: I wonder if plans that Charlie made before he knew about this don't seem to apply anymore? Or if they do?
Speaker 2: Yeah, I'd like to know how Charlie wants to be responded to, even when this meeting is over. For those of us in this room, how would he be most comfortable being responded to?
Speaker 3: I've known Charlie for six years, and, well, I think Charlie's point that he's up against a great deal right now and that's producing a lot of anxiety. I have to tell you, I've noticed in the last year that Charlie has seemed less anxious to me than before, and I'm wondering if there's a sense ... Honoring what you said about the additional anxiety from those sources, I wonder if there's a sense, too, in which when you face the big questions it's, in a way, liberating, perhaps anxiety reducing in a sense?
Kathy Wiseman: What is the best and worst you're looking at?
Charles Collier: Is that one of the questions?
Kathy Wiseman: Yeah, that was a question.
Charles Collier: Well, the best is I can go a long time without being out of it, and then, and yeah, having a short time of that.
Kathy Wiseman: A short time of year?
Charles Collier: In years, yeah. Both my father and my grandfather lived to 95, and I'm not going to get there.
Kathy Wiseman: You believe that you're not going to get there?
Charles Collier: The doctors said not going to get there, not going to get halfway there. That's what they say, I don't know, but it makes some sense to me.
Kathy Wiseman: Talking to your sons about this?
Charles Collier: They know about it, and they ask not ... I mean, they, on their own, are not asking, “How are you doing?” Every time I see them, but, you know, maybe every month or so they say, “How are you doing? What's going on?” And as an optimist I tell them the facts, or if I've been to MGH. And so, you know, I'm trying not to burden them with this, because they have their own lives at 30. And so I think, you know, it's about right for me and for them. Does that make sense?
Kathy Wiseman: Yeah. Andrew's question about being scared, and how you're managing your anxiety?
Charles Collier: Yeah, what's happened is partly because I don't ... I mean, I go long periods without breaking down the way I just did. I can go a long time, but then it just ... something overwhelms me. And it's also tied into, it's just not about ... it's partly me and what I may not be able to do what I want to do. So, there's a grief piece of I am not going to do, when I retire, what I want to do. But the other piece is my father, who was a remarkable advisor to me. And it's interesting for me, I was not there when my mother died, and I had an over functioning mother, intensity from her, and so I now understand, before I got to the Bowen Center, why I was not there when she died. It was too close. It's too much togetherness, I couldn't take it. But my father, who was never overfunctioning, in fact, he rarely asked me ... gave me advice, but he asked good questions. He didn't go to the Bowen Center. And so, his loss, it has surprised me how much I ... what I lost with his death, at the same time of this. So, I got the two things going at the same time. I don't know what the ... That answers some of the question.
Kathy Wiseman: And to manage your anxiety, what are you doing?
Charles Collier: I'm trying to exercise once in a while, hard to do on the road. I'm reminded about someone that said that the ... up to 50 you do biography, and after 50 you do autobiography. It is time to write about what's life. So, I'm already thinking about that.
Kathy Wiseman: So Hartley's question about after this meeting you've got a group of people who know information about you, what's the way of interacting?
Charles Collier: And if they want to ask how's it going, I'll answer. And I like the idea of the companion. They don't have to check ... Don't worry, no one has to check in every two months at all, but, you know, just being present, by your presence, without saying anything, is terrific.
Speaker 4: What I heard Charlie say a little while ago was that he wants to lean into this, that he wants this to somehow add value, someday, for someone else, which is what he's done basically all his life. He's really helped other people make tough decisions that help other institutions and other people. I would take this as a challenge for Charlie to find how this could be the ultimate gift that he gives society, that he gives all of us, and this could be the beginning of it. He's leaning into the headwind, but when you lean into that wind just the right way, it lifts you just as it lifts the bird or the airplane, and this might be your chance to soar and really make a difference someday, more than you've made already.
Kathy Wiseman: So I want you to add any last thoughts. I mean, you've listened, and I know you'll have thoughts after this that we can build on. Think you've got some interesting ideas.
Charles Collier: Absolutely.
Kathy Wiseman: So, just any last thoughts about any part of the conversation?
Charles Collier: Before all this happened, both my father's death on to this, I would talk about, in my sessions, about transitions and loss, and that somehow something can come out of that, which is hard, really hard. But people do, even if they lose their son in war, they start a foundation, they do something, or whatever, which is meaningful to them and makes the world a better place. And so, I was always talking about that, and now I have the privilege to think about it for myself, and what's the lesson, what's the takeaway as well? So, I'm going to fight on.
Kathy Wiseman: Thank you.
Charles Collier: Thank you.