The Very Reverend Tracey Lind is visiting Wilmington Wednesday, November 14 to speak at St. James Parish at 7:00pm. The topic is the Spirituality of Dementia. Tracey has experienced dementia through several family members—and now, first hand.
Tracey says she went through a period of denial about early onset dementia, but eventually, she had to come to terms with it. First, she exited gracefully from her career—three decades as an Episcopal Priest and 17 years as the Dean of Trinity Cathedral in Cleveland. Then, she and her wife Emily went on a road trip … and a cruise to Paris for Easter. At the Strait of Gibraltar, Tracey's perception of her situation shifted, which led to the work she's doing now.
Tracey has written a book, titled Interrupted by God: Glimpses from the Edge
Listen to our conversation above and see our extended conversation below.
Gina: I'm wondering if you could just start by telling me how you started doing these talks.
Reverend Lind: So we're doing a bit of a North Carolina tour.
Gina: Yes, I saw that.
Reverend Lind: What happened to me was, I was diagnosed with early stage, early onset--that means younger--dementia. And as the doctors say, it's probably frontotemporal degeneration, td for short. So they never know for certain until you die and they do an autopsy. So we all live with that word "probably."
About 2 years ago, my life was pretty significantly interrupted by this. And at first I was trying to deny it and ignore it and then eventually had to come to terms with it. And I think I spent probably a good six months trying to kind of come to terms with it. I spent about three months trying to exit gracefully out of my career, my almost 20 years as the Dean of Trinity Cathedral in Cleveland, Ohio, and my three decade career as an Episcopal priest. Sorting through government bureaucracy and insurance and pensions and disability and all that stuff.
And then I spent about three months trying to escape it all in my head. Went on a road trip to see old friends, went on a transatlantic cruise to spend Easter in Paris. And while we were on that cruise, toward the very end, I had this moment ... we were crossing through the Strait of Gibraltar with two continents and full moon and it was midnight and it was actually right before Good Friday. And I just suddenly felt something in me shift. And I said, you know, I'm going to live with this. Whatever it is I'm going to face this chapter of my life. Somehow I decided that I was going to turn it from a death sentence into a pilgrimage. From an intrusion into an invitation.
And I was still anticipating an early death, I was anticipating a slow but steady decline. And on Easter Day, at dinner with my friend, the dean of the American people in Paris and the Bishop of the Episcopal churches in Europe, they said to me, so what do you want to do with this, this chapter of your life and your ministry? And I thought, what ministry? My ministry is over. And they pushed back. They would not take that answer. And so I said, well, you know, I'd like to continue to preach for as long as I can. And teach. I'd like to write and, and to make pictures, photographs and make music and to travel, spend time with friends, spend time with my beloved spouse, Emily.
And the Bishop said, well, why don't you come to Europe and why don't you begin all of this by preaching in the churches of Europe and preaching about dementia? And my friend, the Dean of the Cathedral, said, well, why don't you come live in Paris, live at the cathedral and base yourself there? Because I had said, I want to somehow find the meaning in this. I want to see where God is in this. I want to try to discover the blessings and the grace in this. So it can't all be about loss and pain and suffering. There's got to be more. And I realized that I wanted to live what I've been preaching for over 30 years, that out of pain and brokenness comes wholeness and joy. And out of death comes from life and they challenged me and they invited me and I began doing that.
So I had to spend the summer figuring out what I had to say. And a really good friend of mine who is a scholar, he's a Biblical scholar and theologian, he's a writer, said to me, read the Bible through this lens and you will know what to say. And so I've been doing that preaching weekend and week out in different churches and synagogues around Europe and Canada and the U.S., trying to read scripture through this lens of dementia. And at the same time trying to take care of myself. Really my lifestyle and paying attention to what I've always talked about. Which is mindfulness practices in mindful living.
Gina: People need to come and see you speak in order to hear this, but I'm wondering if you could share some insight that you've gained through approaching it in this way, through approaching your situation in this way.
Reverend Lind: Well, one of the insights I think I've gained is an appreciation for the notion of joy, biblical joy. It's not happiness. Joy is finding hope and meaning and laughter in the midst of dispair and distress and disease. And so I, I found sort of, I think the joy that scripture talks about of the joy of God in all of this. I think I found a sense of gratitude, that while never, ever wished for this to have happened, in some ways very grateful, because it hasn't given me a new lens on life. I appreciate the uncertainty and shortness and tenderness of life. I have had this incredible adventure in experience and togetherness with Emily that we haven't gotten to have with two busy lives and two careers. And now we're getting to do that to, to travel all over the world and to meet new people and to spend time with old friends.
It's humbled me, I've discover a new sort of humility. You know, you have to be able to laugh at yourself when you are going to use the toaster and you call it the escalator. You can't remember the word for the vacuum cleaner and you say, "that thing you push around the room." And you know, you have to give a laugh at that stuff. You have to be able to laugh with you trip. I trip and fall sometimes. And you've got to be able to laugh at that. You, I've also discovered a sense of what Jesus talks about, you've got be like a child to enter the kingdom of heaven. And sometimes I feel like, in this aging body,I feel like a child and have the spirit of a child. It's hard sometimes, it's an embarrassing sometimes, but there's also an incredible joy in that. So sometimes I say, I think dementia gave me a shortcut into the realm of God on earth. I've also discovered what would the wisdom teachers talk about, which is dying to self and being born to anew and discovering that second half of life. And I'll talk a lot about that at St James. So those are just a few of the things that, that I'm learning. I'm learning that mindfulness really makes a difference in your life, that exercise and meditation, and quality sleep, and eating carefully, and properly, and managing stress and anxiety can make a huge difference. I'm also learning the power of letting go, letting go of things I can no longer do and embracing those things that I can do. I don't drive very much and I've given up a car, but I really like my bicycle and the more I'm on my bike and the more I walk, the more I see the world in a different way. Allowing others to help me. And we've received extraordinary gifts all over the place. And learning, learning to receive as well as to give. Hospitality is a two way street. You know, you can be a good host, but you can also be a good guest.
Gina: I'm wondering if you feel a difference in the way that you see the world, like literally the way you perceive people or being in situations the way you're looking at things. Do you feel a difference?
Reverend Lind: Well, you know, one of the things that's different for me now is I used to move and an extraordinarily rapid pace. I move much more slowly now. So I do tend to see the details more. I think my conversations with people are deeper, actually. Conversation is hard for me. In terms of language, I'm much better off when I write down what I want to say and then can say it. So when people hear me speak at St James, you know, they'll look at me and say, you know, does she really had this thing, because I've really honed what it is I have to say. But conversation is hard because then I have to think about my responses. So I tend to listen a lot more and talk a lot less. That's a big change in the joke is I can now go on a silent retreat.
I tend to look more deeply, I think. I tend to give people a lot more room. I've been an activist all my life, I've been a political activist. This election season, you know, I've, I've sat it out, I can't be out there, I can't handle that. And so I think it's allowed me actually to listen to people a lot more and to be more tolerant in some ways of people who believe very differently than me. On the other hand, I think it's also maybe more honest. It's a "both/and." But I think I also have a deeper relationship with God right now. You know, I don't have to speak words to talk with God. With humans, I have to do that. So my relationship with God is pretty good right now.
Gina: How did you first realize that something was going wrong in your mind, that you saw a doctor about it, or what happened that led to the diagnosis?
Reverend Lind: Well, I, I think it grew over time and if you were to ask my doctor, she would say I've been worried about it for a few years. My mother and a couple of my aunts and my grandfather all lived and died with dementia, so it runs in my family, so I been aware of it. But I started showing up at the wrong place at the wrong time. I couldn't manage my calendar. I was tired. I was sleeping a whole lot. I didn't have a lot of energy. I was starting to feel very apathetic. I started worrying that maybe I was burned out. Or just tired. And often dementia, especially, frontotemporal degeneration, is often misdiagnosed as depression or burnout.
I wasn't recognizing people's faces, much less remembering their names. I was struggling to find words. I was stuttering and I never stuttered. I was stuttering really badly. I was falling a lot. I was having a very difficult time making decisions about anything, And as I share and almost all of my talks, one day I was standing in a restroom, public restroom washing my hands and I looked in the mirror and I recognize my own face. And that, that disconcerting moment led me to call a neurologist.
Gina: Tracey, who should come and listen to your talk?
Reverend Lind: I think everybody should come listen to my talk, but I think, people who are concerned about themselves or somebody they love who's living with dementia or worried about dementia. Emily, my spouse, also will be speaking. So care partners and family members and spouses should talk about what that's like. I think clergy and care providers, doctors and nurses who deal with the people with dementia. I think maybe I have some insights to offer them that they perhaps haven't considered or could use a refresher.
And I think, I think a lot of what I talk about is what it's like to find life after something's been broken. So people say to me who are struggling with cancer or diabetes or heart condition or have recently lost a loved one or lost a job, say to me, you know, what you're talking about applies to me as well. And I think a lot of what I'm talking about also speaks to the spirituality of aging, what our elder years look like. In some ways, I think for me, early onset dementia is sort of accelerated age. Sometimes I feel like my brain works more like that of somebody in their late seventies, early eighties than somebody in their early sixties.
I think a lot of my message is about hope, it's about finding hope. You know, the Dalai Lama said that his exile gave him an opportunity to get closer to life. I think that's probably what I'm discovering and what I'm talking about. And the other thing is the importance of speaking truth and the importance of honoring one's truth. That dementia is something that we are frequently ashamed of and embarrassed about. And I'm here to say that honesty is really important, that denial is not helpful, that transparency makes life easier for everybody, and that early diagnosis can result in a higher quality and longer life. I think. And that's a key part of my message. If you're worried, go talk to your doctor. If your doctor doesn't take you seriously, push him or her, and if they still don't take you seriously, go get another doctor.