In 1984, Rita and her husband Brad welcomed a healthy baby boy named Brandon into their family. Only five years later, Brandon began a 20-year battle with brain cancer. They watched as their son became increasingly mentally and physically handicapped.
In June of 2009, Brandon suffered a devastating stroke in the same site as his original brain tumor. With broken hearts, Rita and Brad, made the necessary decisions to set up hospice care. They said goodbye as he “healed into death,” as Rita has so beautifully described it.
Rita shares important lessons that her journey with Brandon taught her about suffering, trust, self-care, courage and so much more.
You can listen to my full conversation by clicking ‘play’ below, or on the following podcast platforms:
Finding the Courage to Embrace Life After a Son’s Death
The following is just a glimpse into Rita’s inspiring insights.
Q: As Brandon’s medical crisis turned into a 20-year chronic condition, what did you learn about self-care?
Rita: I think people often misunderstand self-care to mean self-indulgence. I actually think self-care is a form of self-discipline, where you choose to do those things that move you in the direction of health and aliveness, so you can authentically show up.
Q: What did Brandon’s life and death teach you about trust?
Rita: In the medical world, you don’t get a choice about trust. You have to sign over your child to surgeons and doctors and nurses really on blind faith. We found a place of existential faith that we were all going to do the best we could. We chose to trust what you couldn’t see, what we couldn’t understand and what we couldn’t control.
Q: How did you learn to be OK with receiving help from others?
Rita: When we truly engage in the mutual act of giving and receiving, it brings us into an awareness of the interconnectedness of all things. And it tears down our illusions of being separate.
Q: How are you different as a result of going through the pain of Brandon’s illness and death?
Rita: I think how I have changed or been transformed has to do with letting go of everything that’s not me. And letting go of all of the attachments we collect growing up about what we’re supposed to be and do in the world. I think that’s an ongoing journey to become more and more transparently and authentically the person I’m divinely birthed into being on the planet.
When I ask if there’s one last thing she’d like our listeners to hear, Rita says, “When we look at the world, it’s really easy to be so discouraged that we want to numb out or shut down. This is really a time when I am called to continue to be love and light in the world in whatever way it’s given to me to do that. And to trust in the larger mysterious reality that is divine and intended for love and life and aliveness at its very best.”
Rita Berglund is a psychotherapist and retreat leader based in Centennial, Colorado. She is the author of An Alphabet about Kids with Cancer.
About Rita Berglund
In 1984, Rita and her husband Brad welcomed a healthy baby boy named Brandon into their family. Only five years later, Brandon began a 20-year battle with brain cancer. They watched as their son became increasingly mentally and physically handicapped. In June of 2009, Brandon suffered a devastating stroke in the same site as his original brain tumor. With broken hearts, Rita and Brad, made the necessary decisions to set up hospice care. They said goodbye as he “healed into death,” as Rita has so beautifully described it. Rita shares important lessons that her journey with Brandon taught her about suffering, trust, self-care, courage and so much more.
Find Rita online: http://www.ritaberglund.com
Rita’s Book: An Alphabet about Kids with Cancer
Book Mentioned in the Interview:
Love Is Complicated: A True Story of Brokenness and Healing, by Marlena Fiol, available for pre-order at Amazon, to be released July 14, 2020
About Marlena Fiol, PhD
Marlena Fiol, PhD, is a globally recognized author, scholar and speaker. She is a spiritual seeker whose work explores the depths of who we are and what’s possible in our lives. Her significant body of publications on the topic, coupled with her own raw identity-changing experiences, makes her uniquely qualified to write about personal transformational change. She is also a certified tai chi instructor and freelance writer whose most recent work has appeared in numerous literary magazines and newsletters.
You can find Marlena in the following places:
https://marlenafiol.com
Facebook
Twitter: @marlenafiol
Podcast Transcript
Below is a complete transcript of the podcast. I used a transcription service to create this, please note that there may be errors. For a 100% accurate quote of what was said, please listen to the podcast itself via the links above.
Marlena: I am honored to introduce today’s guest, Rita Berglund. She’s a Psychotherapist, a spiritual director, and a pilgrimage, and retreat leader based in Centennial, Colorado. Rita is the author of “An Alphabet about Kids with Cancer.” In 1984, Rita and her husband Brad welcomed their second child, a healthy baby boy named Brandon into their family. Only five years later, Brandon began a 20-year battle with brain cancer. And they watched as he increasingly became mentally and physically handicapped.
In June of 2009, Brandon suffered a devastating stroke in the same site as his original brain tumor. With broken hearts, Rita and Brad, made the necessary decisions and set up hospice care. They said goodbye as he healed into death as, Rita has so beautifully described it.
The theme running through all of our episodes for this podcast season titled “Becoming Who You Really Are,” is that going through adversity sometimes leads us to more fully understand who we are, and also to know at a deeper level what’s possible in our lives. Moving on after the nearly unspeakable heartbreak of losing a child, certainly fits this theme. Rita, welcome.
Rita: Thank you, Marlena. It’s very good to be with you.
Marlena: Rita, I’d like to begin by asking you to tell our listeners about the events in the late 1980s that led up to your son’s diagnosis of malignant brain cancer.
Rita: Well, in addition to having Brandon join our family, we had a daughter join our family named Brianna. And with two small children, we decided we wanted to move closer to our extended families in Colorado and Kansas. And we had just moved back to Denver in order to make that happen, so that their grandparents could be a part of their lives. So we have these dreams, we have visions about what our life is gonna be like in the mountains we’re gonna climb. And suddenly and shockingly that all just crashes down around you. Because childhood cancer was not something we ever imagined being a part of our family’s life and reality.
So in one brief medical piece of information, we began a long process of grieving and letting go of what we thought our life was gonna be like, and who we thought we were gonna be in that life.
Marlena: Yeah, yeah.
Rita: So it was a good deep immersion into grief and terror that there really isn’t words for.
Marlena: Yeah. Each year the parents of over 15,000 kids will hear the words, “Your child has cancer.”
Rita: Yeah.
Marlena: Across all ages and ethnic and socioeconomic groups, this disease really does remain one of the number one causes of death by disease in children. And yet, like, you said just now Rita, most of us as parents have no thoughts about this as we take our young children to their preschool, we swing them on the playground, we kiss them goodnight. I wonder if you could reflect back on the time when you initially received the news about Brandon’s illness. Did you go through the typical early stages of shock and denial, and if you did, how did you move past them?
Rita: I think initially there was definitely a lot of shock. Brandon had begun to show symptoms, these mysterious symptoms that we couldn’t understand. They didn’t match any sort of typical childhood disease that we knew of. We ended up in children’s hospital getting a CAT scan. And, you know, then being invited to walk into this room to meet the doctor who turned out to be our oncologist, Dr. Ed Arenson, who also became a dear friend after such a long journey together.
But to hear the news and to see on the scan the tumor that was in our son’s brain. So I can’t really say denial was a part of it but definitely shock. I mean, evidence is just so graphic when it’s happening. You really don’t have any luxury of denial. And also he was close to death very quickly. You know, it wasn’t like we could pretend something wasn’t happening. We were rushed into the intensive care unit. And within 24 hours, he was in major surgery to try and understand what kind of cancer this was, and what an approach to treatment might look like.
So, denial wasn’t a part of it, but definitely grief and shock and fear, you know, intense fear. And that feeling is apparent that you’re out of control and that you have failed, because you didn’t protect your child from this. And that you may even be at fault. I think, it’s impossible not to go, “What did I do that might have allowed this or contributed to it or perhaps even caused it?” So…
Marlena: Yeah. And guilt, of course, is one of those early stages of grief does entail guilt, and so that is also a very typical response. Rita, as you said, you have a daughter, Brianna, who’s a few years older than Brandon. How did your son’s diagnosis change your whole family’s life early on?
Rita: Yeah. Actually, Brianna is two and a half years younger.
Marlena: Younger, not older. Sorry.
Rita: Yeah, not older. And, of course, as a tiny toddler, she really couldn’t understand what was happening. And also we were still fairly new in Denver. So needing others to care for her who were basically strangers and being thrown into a strange situation, you know, I think she was very perceptive to realize this was a grave emergency, and trying to still be a kid and get her needs met.
So I think she was carrying a lot of fear and trauma as well into the situation. Because her, not only that, was she in a new home, but she suddenly were in an entirely new situation. And so her normal resources weren’t available in the same way either. So I think we held onto each other really tight and we tried to be as skillful as we could, explaining the situation to both our children, and then equipping them with as much love and support.
Marlena: Yeah. I’m going to go to a very positive playful note here for a moment. I remember hearing an account of Brandon’s skiing in the Colorado Mountains. He had spotters in front of him on both sides and in the back. And as I remember the story, he threw himself into the sport with complete trust. First of all, Rita, I’d love for you to describe that scene more fully for our listeners. And then tell us also, what was his degree of disability as he went flying down the mountainside on skis?
Rita: Wow, that’s a big leap.
Marlena: Yes.
Rita: So give me a minute. He was in a great deal of extreme forms of treatment for three years. Multiple surgeries including craniotomy, where they went in to work with shunts to try to remove parts of the tumor or all of the tumor. During one of those surgeries, he had a stroke, so he was paralyzed on the left. And then he also had cancer invade his right occipital lobe. So he was also blind left peripherally. And more than blind that part of reality no longer existed. So, the right hand of reality was the only one that existed for him.
And the cancer also caused him to stop growing and to be very small. Radiation caused his spinal cord to fuse and stop growing. So you have to imagine this really petite boy who can’t see or experience the left side of reality, and who has no function on the left side of his body. And he’s at the top of a mountain, and he’s wrapped in a pod, sort of seated pod piece of equipment with two skis underneath and two outriggers kind of like on a catamaran sailboat.
Marlena: I just love the image.
Rita: Which we think would keep him from tipping over, but it doesn’t completely. And he has no brakes. He has no ability to stop himself. And in his deepest heart of hearts he wants to be a kid, and he wants to be free.
Marlena: Yes.
Rita: And in order to do that, he has to completely trust his body and his experience to others, which by some strange grace he does.
Marlena: So I just love that scene of him hurtling down the mountain and trusting. So my question for you is, what did Brandon teach you about trust in your life?
Rita: I think trust is one of those complicated words. And English is really inadequate, because I think there’s probably many kinds of trust. I mean, the trust of Brandon, you know, letting himself slide down the mountain and know that people around him are gonna keep him safe. And to do that with such abandon and such joy was an amazing kind of trust. And we saw him trust his doctors. And in the medical world, there’s also this place where you don’t get a choice about trust.
Marlena: Say more about that.
Rita: You have to agree to things without trust. You know, you have to sign over your child to surgeons and doctors and nurses really on blind faith. Because you do not know what the outcome is going to be. And I so appreciated how honest many of our doctors were with us, you know, without being manipulative or trying to force us into decisions using fear. But rather just saying, “This is not a good situation, and we will do the best we can, and that’s all we can do.” So I think there was a place of sort of existential faith that we were all just gonna do the best we could do.
So I think out of that, there’s a kind of trust that comes out of like spiritual practice. That you choose to trust, what you can’t see, what you can’t understand, and what you can’t control. And there’s something about that that comes out of the heart of existence. But again, I think we have difficulty articulating.
Marlena: Yeah. Rita, as Brandon’s medical crisis turned into a 20-year chronic condition, what did you learn about self care?
Rita: First, I should say I learned I was really bad at self care.
Marlena: As most of us are.
Rita: I think we grow up learning to self compromise in order to take care of those around us. So sometimes that’s appropriate. I think often people misunderstand self care, self indulgence. And I actually think self care is not self indulgence, rather, it is a form of self discipline. You know, where you choose to do those things that move yourself in the direction of health and aliveness and a place of boundaryness, where you can authentically show up with who you are including with what your needs are. One of the things I learned during our journey with Brandon was that saying how I felt was difficult, saying what I needed was even more difficult.
Marlena: Yes.
Rita: And I think that’s true with many people. It’s one thing to say how I feel. It’s another thing to go to that place of vulnerability of expressing that there’s something I need from you, knowing that you may say no, or that you may not come through for me. That’s such a profound vulnerability. And, again, it’s a part of self care that most of us don’t wanna look at. We want to be self reliant and self sufficient and, “I’ll take care of it myself.” And when you’re put in a situation where that’s impossible, it really tears out the foundation of your sense of self.
Marlena: Yes, yes. Susie Rinehart, one of my guests on this podcast is the author of “Fierce Joy” and she talks about how for many of us receiving is so much harder than giving. We see it as a weakness. Susie said, “To receive is an active verb when you invite someone to help you. In fact, you strengthen their sense of connectedness as well as your own.” And I think that really speaks to that vulnerability that you just talked about. How did you learn about really the virtuous action of receiving help from others?
Rita: Oh, it’s interesting to hear you put the word virtuous with that.
Marlena: And I think that was what Susie’s message was that it truly is a virtuous action.
Rita: I’d probably add the word transformative. You know, I think it changes us fundamentally. When we truly engage in the mutual act of giving and receiving, which we do with nature, right? We don’t exist without giving and receiving with the trees so that we have oxygen to inhale, and the trees have carbon dioxide to inhale. You know, it brings us into that awareness of the interconnectedness of all things. And it tears down our illusions of being separate.
Marlena: Yes. Yes, which is so close to what Susie said about strengthening the sense of connectedness all around.
Rita: Yes, yes.
Marlena: So a moment ago, Rita, you spoke about an existential faith, and I’d love to pick that up and go a little deeper there. Despite major advances from I think the overall survival rate was just 10% of kids with Brandon’s disease, and now it’s closer to 90%. But still for rare cancers, the survival rate is much lower. And faith in the face of that is something I’d like to talk about.
Linda Atwell is another of the guests that I’ve interviewed for this podcast season. Her daughter, Lindsey, was diagnosed with a neurological disability when she was just 16 months old. And well, Lindsey still lives with us today. And in her in her book “Loving Lindsey” Linda writes about her determination for years to fix it, to make it better. And I’m just wondering during all those years before Brandon’s final stroke, did you keep the faith for a fix of some sort, a positive outcome of all of this?
Rita: No. At that level, no. Did I have the desire to fix it and find a cure? Hell, yes. I don’t think I think of that in terms of faith, though. I think there is just fundamental attachment or was for me a fundamental attachment as a parent, you know, wanting to stop the pain, wanting to stop the suffering, wanting to stop the damage. I think faith for me is more of a surrender to the bigger mystery of what I can’t control. Which I think is where as I learned to let go and accept that I didn’t have control was sort of a clearing out, how do I say, a deconstructing of my sense that there would be some sort of divine intervention, rather than there was a more of a collective process that we were all engaged in. And we had to accept the mystery of not being able to control the outcome. And how to move into sort of a radical presence to what truly was in front of us, moment by moment to radically move into the now as so many other great spiritual writers have talked about.
So that because in the now is the only place we really are in relationship. We can’t be in relationship in the past or in the future. Our relationships are lived out in the present moment. And that’s very difficult actually. I mean, I hated the cards that came that said, you know, told us to live in the present moment. And I wanted to scream because that is so painful and difficult, because there’s very few people who want to show up there with you, particularly when you’re in suffering or in pain, or in a situation where it can’t be fixed. There’s nothing you can do to make it better.
Marlena: Oh, Rita, this leads me to a question I really did want to ask you. And that is that many of us don’t have, any idea what to say or do for someone who’s experiencing the loss that you did when Brandon died. Please tell us, what were some of the least helpful responses you received other than. “Be in the moment?” What were some of the other responses that were simply not helpful?
Rita: I think there’s an impulse in humans to want to explain why something is happening to you. And, of course, there’s tons of books out there of other writers trying to come up with these answers. Why do bad things happen to innocent children? Why do horrific things happen to people who are vulnerable and not protected? Honestly, I couldn’t ever come up with a good answer. I don’t know why these kinds of horrific things happen on our planet. I do know that collectively we can actively or passively contribute to those things, but even doing our very best as human beings, bad things still happen.
So I think the thing that I learned from so many remarkable people who came into our life in terms of being helpful were people who were willing to be witnesses to our experience. And to say, “I see what’s happening to you. I’m here with you. Is this a good time to come and sit with you?” Really practical moments of people being passionate and present to our experience, to our children’s experience. And I think that’s very difficult because, of course, it brings up their painful experiences, right? How can they be present to our painful experiences, if they’ve never practice being present to their own painful experiences?
Marlena: Yeah. I love it that you turned my question from…in your response turned it from the least helpful to in fact what we can do to be most helpful in these sorts of circumstances. And thank you for that.
Rita: Yeah. And I think the other thing I would add it was helpful when people were genuinely curious. “What is this like?” “Tell me what’s happening.” And with respect also when we said, “Now is not a time for me to share that,” but didn’t run away but continued to be present. And also to allow us to be present to them, to allow it to be a two-way street in the exchange, to allow us to extend hospitality as they came into the hospital room and to receive it, so that there was a practice of equanimity in the room, where we were all fellow pilgrims, so to speak, on this journey, on this planet.
Marlena: Yes. Thank you for that. I think that all of us really appreciate really that kind of advice from someone who’s been there. So thank you. The theme going through this entire podcast season is that our painful experiences sometimes if we’re open to it, lead us to a deeper understanding of who we are and maybe even what our life’s purpose is. We’ll talk in a bit about how your experiences with Brandon have affected your work and the work that you do with Brad, your husband. But how are you, personally, Rita, different as a result of going through the pain of Brandon’s illness and death?
Rita: That’s a huge question.
Marlena: Yes.
Rita: I think in some ways, I’m not different at a sort of fundamental ontological level. I’m still my history, I’m still my compulsions and my patterns of coping and I’m not always skillful. I think how I have changed or been transformed has more to do with sort of letting go of everything that’s not me. And letting go of sort of all of the attachments we collect growing up about what we’re supposed to be and do and function in the world, and really letting go of everything that wasn’t me. And I think that’s an ongoing journey. So that I can become more and more transparently and authentically the person I’m divinely birthed into being on the planet.
Marlena: That’s beautiful.
Rita: I don’t know that I’m articulating that very well, but…
Marlena: No, I think you are.
Rita: I think it’s a stripping away and it’s painful.
Marlena: Yeah. You’ve said that your journey with Brandon invited you to see your own brokenness as an opening into more compassionate ways of responding both to yourself and to others. And you’ve written so beautifully, and I quote, “Our hearts must be broken in order to be bearers of compassion and forgiveness.” How did your understanding of compassion evolve?
Rita: I think it evolved because of a number of influences. I mean, Brandon’s medical crisis, of course, threw me into reading and becoming a spiritual seeker on a whole new level. I think it also was something I experienced from the people, some of the people who came into our life at that time, people who did show up and were compassionate without any judgment or attachment to outcome, without any ego. They were just willing to show up and be present. I think in our culture, we tend to confuse compassion with empathy. That if I’m feeling your sadness or I’m feeling your pain, I’m there for being compassionate.
And I think there’s a place for empathy where it gets muddy, though, is that if I’m feeling your pain and I don’t want to feel it anymore, so I want to fix it and I want to make you better, right? I want to comfort you, I want to stop what’s happening, I want to stop this experience. And compassion takes us to a different deeper place. I think empathy is a part of the door that can lead to compassion. And deep compassion for me is a place where you’re radically present to the clarity of reality as it is, in that moment, whether it’s great joy or great suffering, whether it’s playfulness or, you know, something that you’re creating artistically and creatively. It’s that sort of radical presence where we’re open to something bigger being a part of the story, that there is something bigger than our individual stories that can be present by the communal experience.
Marlena: I love the distinction you’re making between compassion and empathy. It’s something I’ve not thought a lot about, and I really appreciate it and I know our listeners do as well. Rita, I’ve heard you say that the chronic medical crisis in your family turned your life into a spiritual pilgrimage. How did the journey and death of your son shape the work that you do and the pilgrimages that you now lead with your husband, Brad?
Rita: I need to give Brad credit at this point for really making that connection with the concept of pilgrimage. I think we both realized that our life had been forced onto a radically different path. What was normal in our life would not look normal in anybody else’s. The way we had to move and be in the world was very unique. And it was creatively designed around the unique needs of our son and our family.
At one point, Brad became more and more interested in the concept of pilgrimage and ultimately took it up as a sabbatical study. Because there was this parallel that we saw between ancient as well as contemporary pilgrims, where you leave home, you leave your status, you leave everything that defines you as you in those social constructs. And you literally go out with no control over what might happen on the road. You open yourself up to whatever the weather is gonna be, whatever the terrain is gonna be that you’re walking across, whoever you might meet be a friend or foe, and also how you will encounter yourself in those experiences.
So there’s a stripping away of self that happens in pilgrimage. At some point, I think ancients probably realized it’s one of the things that deconstructs our ego, because our egos become rather useless when you’re on pilgrimage. They get in the way. Our big egos get in the way of truly engaging in the experience of life when you are a pilgrim like everybody else. And you don’t have social status, and you don’t have power over anyone else. And sometimes you don’t even have power over yourself when you’re sick or too exhausted.
So it’s this really unique sort of crucible of spirituality that really demands a whole different kind of spiritual practice, and also to entering into this mystery again of uncertainty. I think, you know, I grew up in a Christian tradition where we worked really hard for certainty around belief and how we can make the world better and how we can make ourselves better. And there’s a place for that. However, at some point, I think we want to be able to step outside that and have a new perspective, a bigger perspective that allows us to ask universal questions that have no answers.
And I think that was part of, at some point, both Brad and I realized we valued those questions more than inadequate answers. We valued these big questions that called us into mystery rather than certainty, that called us into opening our hearts, opening our hearts to new experiences in a way that was authentic and vulnerable. And that changes you whether you want it to or not, you know.
And then getting excited about helping form or structure opportunities for other people to have those experiences without a life trauma or tragedy forcing it upon you, you know. We wanted to give people the opportunity to choose to be a pilgrim rather than being forced to be a pilgrim.
Marlena: My husband Ed and I have been on numerous of Rita and Brad’s spiritual pilgrimages. In fact, the first one was the year Brendan died. So we’ve been the fortunate beneficiaries of this very important work.
So we spoke earlier, Rita, about the sometimes unhelpful and even inappropriate responses to someone in the midst of great pain. I’m also wondering, I’d like to talk a bit about the responses that we often have in regards to someone who’s going through what Brandon experienced.
So a typical reaction, for example, in myself and I think in others, when we see someone with a visible handicap is that we immediately want to help and protect. And we perceive ourselves as the helpers and we perceive the other as someone in need of help. I’m sure you experienced that with Brandon. I’m sure that he experienced that over the years. How are those perceptions often unhealthy and unhelpful?
Rita: I think when we see somebody who is visibly disabled in some way, we tend to project onto them some aspect of our own story and/or our own fear. So, of course, we wanna come in and make it better or as you say fix or protect. And that tends to be very reductionistic. You know, we turn the other person into this one small aspect of who they are. You know, as though that’s the thing that tells their whole story.
One of the things we worked with around Brandon was that cancer was a part of his story, and it wasn’t his whole story. So I think one of the things that’s helpful is whenever you encounter another person is to get interested in their bigger story. Brandon had a bigger story. He wasn’t just a kid with cancer. He wasn’t just disabled. He had this big story. Our family had this big story.
So I think I would invite people always to get curious. “Tell me your story.” “Tell me what you’re into?” “What kind of books you read?” “What kind of movies you like?” “What kind of adventures do you wanna go on?” or “What are your dreams?””What are you passionate about?” So that we get a sense that, you know, just like any…what I wanna say, unique shaping, that it’s either seen or unseen, it never reveals the whole story.
You know, it’s like trying to look at Monet’s paintings, you know, through a square inch piece of paper. You know, we wouldn’t be able to see much. We certainly wouldn’t be able to understand his vision of the Lilies, for example, right? Any great painter, you wanna see the whole vision. So it’s like, pulling out so that you can have a bigger vision when you encounter somebody who’s unique in some way, who is different in some way.
Marlena: Yeah, I can’t help myself. Listening to you, takes me back to what my father used to say. And it’s something I’ve written about in the new book that’s going to be released soon. But it was my father working with leprosy patients, and he would say, “They are not lepers. They are people with a larger story. They are people with dignity who happen to have a disease called leprosy. They are not lepers.” And it’s an entirely different, the details are different, but the story is exactly what you I think were just talking about so it takes me back.
Rita: Yes. And to realize that we all have wounds of one kind or another, and we would never wanna be defined by those wounds.
Marlena: Yeah, yeah. Rita, I’d like to talk a bit about prayer. Other guests on this podcast have made a distinction between prayers that beg for a specific outcome and prayers that are a more open-ended thy will be done. When Brandon was ill, how did you think about the role of prayer?
Rita: Wow. To be quite honest, I actually stopped praying for a very long time. I think I came to understand prayer is not something that I do to try and change God or to try and change a specific outcome. I’ve come to practice prayer as a reminder that I’m interconnected and interdependent with everything on the planet, both past and future. So when I pray now I pray to be more aware and mindful of that interconnectedness, and in whatever way possible to put out love and light and healing on the planet.
Marlena: Yeah.
Rita: There’s a friend of mine who is a remarkable mystic in my life talks about being an anchor of light in the world. So I think about prayers, that place where I practice, to be an anchor of light in the world.
Marlena: That’s beautiful. Thank you. So I’ve recently read an article you wrote. I think you wrote it some time ago. And in it, you describe a community celebration in a small Southeast Asian village. And you described that the most vulnerable were in the center as they prepared for the celebration, the dance. And the most powerful were around the periphery. Will you describe this? Do you remember what I’m talking about?
Rita: Oh, yes.
Marlena: Would you describe that for us?
Rita: I had the remarkable experience, due to the invitation of some amazing people, to go to Thailand and visit Lahu Village in Northern Thailand as they were preparing to celebrate their New Years. And I was very surprised to see that as they prepared for the community dance, that along with the musicians, the band sort of setting up in the middle of the dance circle, also anyone who was elderly or disabled or sick was also brought to the center. And then around that, in sort of concentric circles came the dancers with the older members of the community towards the center going out to the younger teenagers on the outer edges.
And I was so moved by this, because I realized my son would be in the center. He wouldn’t be relegated to an observer position outside the circle. So I spoke with my wonderful hostess who had invited me there incident, and I was actually crying. I’m like, “Explain this to me. This is so beautiful.” And she said that, “We don’t think you can dance properly unless your heart is open. And your heart isn’t open unless those who are most vulnerable are in the center of your community.”
Marlena: Wow.
Rita: So it just created in my mind this really sort of radical shift about where we should be putting the most vulnerable members of our communities whether it’s in our churches or places of worship, whether it’s in our political gathering, whether it is at a social event. You know, we tend to see handicapped seating as the furthest back or the furthest outer edges. And instead here, they were put in the very center. And it completely shifted the experience of the dance in a way. And, of course, I’ve recreated this on retreats and with other groups that Brad and I have worked with.
And it is interesting when I see folks sort of, I mean, at first it feels very scary, particularly if you’re one sitting in the middle. You know, suddenly you feel like you’re the center of everyone’s attention. You know, you can’t hide, you can’t hide your disability, you can’t hide your illness, whatever. You can’t hide your age…
Marlena: Unfortunately.
Rita: Right. So there’s this whole other piece of also allowing yourself to be authentically seen. And to also see yourself as having a role, even in your brokenness of administering to others. You have a role in the community, you have a role in the family, you have a role in the congregation, in the gathering. Because you can’t hide behind an ego-built facade of “I’ve got it all together, and I’m powerful and I’m strong.” And there seems to be something that really shifts our understanding of reality in that moment, at least it did for me.
So it’s something I try to practice in any gathering I create. Because it shifts something really profoundly about our heart centeredness as humans and that our number one calling so to speak, is to care for those who are vulnerable. I think there are several people who have said the measure of any society is how well it takes care of its most vulnerable members.
Marlena: Yeah. So what you’re describing is such a powerful message with implications at so many levels for our world today. Rita, you’ve talked about writing a book about your journey with Brandon. Are you still planning on doing this?
Rita: Oh. I keep wrestling with it. Both Brad and I have, you know, touched on it now and then. Right now our lives are so full we can’t seem to feel that we have space for it. It is also difficult in our culture right now when there are so many words that flow through our houses, through our lives every day now. Our access to media and the books and it’s just unprecedented. So it’s hard for me to find where it is. I want to have that authentic word that’s worth other people hearing. And that’s just my own personal wrestling, because there are many people who share the same kind of story and experiences we have had.
So I’m certainly not unique in that way. But, you know, we’ll see. We’ll see what happens in the next few years. We’re hoping to retire in a few years. And that may start our new season of writing, as it has I know for you, which has been wonderful to witness.
Marlena: Yeah. Rita, you’ve been such an inspiration to me and to my husband over the years that I’m just delighted that I can do my small part in getting your voice out there. And I’m just going to ask, as we conclude, is there anything else that you would love for our listeners to hear, what would it be?
Rita: I think the thing that’s been echoing in my life recently is to not lose heart. I think when we look at the world, it’s really easy to be so discouraged that we want to numb out or shut down. And I think it’s really a time when I am called to practice courage and to not lose heart and to continue to be love and light in the world in whatever way it’s given to me to do that. And trust in the larger mysterious reality that is I think divine and intended for love and life and aliveness at its very best.
And I’ve loved witnessing that with you and Ed as well in your journeys, and desires to live with as much aliveness and love as possible. So, you know, take heart and practice courage.
Marlena: This has been a very meaningful conversation. Rita, thank you so much for taking the time to speak with me.
Rita: Thank you, Marlena.
Marlena: I’ve been speaking with Rita Berglund, a Psychotherapist, spiritual director of pilgrimage and retreat leader, and the author of “An Alphabet about Kids with Cancer.” Details about how to contact Rita and also to learn about Rita and Brad’s pilgrimages can be found on the show notes. And thank you our listeners for joining us today. Please consider sharing this interview, if you know someone who would be interested in hearing about Rita’s incredible story, about moving through grief into joy and compassion. We are together on this journey.
An incredible story of suffering and the beauty that came fourth in the people who confronted it.