In this episode of How We Heal, a podcast collaboration between CaringBridge and End in Mind, host Brigid Bonner talks with reporter Cathy Wurzer about a framework for healing based on a person’s ability to “belong, believe and be.” The conversation centers on CaringBridge user Michael Bischoff, who said living with brain cancer offered a chance for healing, if not cure. Those who knew and loved Michael reflect on the ways in which he opened himself to the love of family and friends, and how he worked to make sense of a senseless diagnosis.
Brigid Bonner (chief experience officer at CaringBridge): It’s exciting to talk with you about something brand new from CaringBridge. Our very own podcast. I’m Brigid Bonner, the chief experience officer for CaringBridge.
Cathy Wurzer (podcast host, Emmy Award-winning journalist, founder of End in Mind, a nonprofit focused on storytelling for every stage of life): I’m Cathy Wurzer. I’m a professional question-asker and storyteller. I’m a broadcast journalist who is also a big fan of the work that your team, Brigid, is doing at CaringBridge on how folks find their unique path toward healing.
Brigid: This podcast is an interesting experiment. We know that podcasts are very popular right now, and really it’s about the storytelling. You know, people love to learn through storytelling. And in fact, that’s what CaringBridge is, in many ways. More than 300,000 people a day are coming to witness people on health journeys. And our thought behind this podcast is that we could we help more people by sharing the good work of CaringBridge, and exploring the topic of healing, and how family caregivers may get through a tough time when they have a loved one on a health journey.
Cathy: I think is a great idea.
Cathy: It just feels like a natural extension of the work started. Was it 1997 by Sona, your founder?
Brigid: Yes. Sona Mehring is the woman who founded CaringBridge in 1997. And it’s an amazing story. She did that right here in Eagan, Minnesota. And she was a software engineer by training. She had two good friends, JoAnn and Darrin, who were having a baby prematurely, difficult and high-risk situation. So she, like any good friend, said, “Hey, how can I help?” And they said, “Call this list of friends.” After making a couple of calls. She’s like, “Whoa, this is so draining. There has to be a better way.” So she went and coded up the very first CaringBridge site.
Brigid: And that word, “CaringBridge” came out of the words, “Caring for Brighid,” which was the name of their baby girl.
Cathy: That’s a great story.
Brigid: Yes. And it was really a way to communicate. Back in 1997, people didn’t have cell phones in their pockets. Some people didn’t even really use email that extensively. So how are you going to get the word out? How are you going to connect? You can’t text message people and things like that. And so CaringBridge was a way to connect people. Baby Brighid only lived a very short 9 days. But the thing that was remarkably different was when everybody was gathered at her service, everybody already knew what happened. And so they were there simply to love JoAnn and Darrin and provide them that support because they were already connected in a very meaningful way.
Cathy: That is a great story. There are so many stories that are powerful and courageous on CaringBridge. I have several friends who are going through health journeys right now and they’re using CaringBridge. My good friend, Bruce Kramer, he was also on CaringBridge. I know, you know Bruce.
Brigid: Yes. Amazing.
Cathy: He lived, really, an extraordinary life with ALS.
Brigid: Yes, he did.
Cathy: And if there’s anything that I’ve learned, I guess, in my long career as a journalist is that storytelling is really the most powerful way to connect, to learn, to understand, to heal. And I know this what CaringBridge is all about, too.
Brigid: Yes, absolutely. I think that in the healthcare system they would call it “social support.” And it’s this idea that medicine can do a lot, but it’s social support, and meaningful connections, and people telling their stories, getting the love and knowing that they matter back from people that they care about deeply. That just fuels people through a really difficult time.
Cathy: Give me a framework here about the type of stories you have that you explore on the CaringBridge site.
Brigid: So “framework” is a really interesting word. Going back to the 20th anniversary of CaringBridge, in 2017, we decided to put a call out for our users to say, “How is it that you got through tough times? How did you get through these health journeys, both the patients and the family caregivers. And we aligned with a friend and filmmaker named David McLain from National Geographic.
Cathy: Oh, I know. He’s great!
Brigid: You know David.
Cathy: Yes, he’s great!
Brigid: He does amazing work. And we talked a lot about how do we bring these stories to life? How do you talk about things that people don’t want to talk about? And so we actually, through our CaringBridge users, learned that there are multiple paths, multiple possibilities, for people to find their own path to healing, even in cases where cure is not possible.
Cathy: Well, I’m glad you said that because the two stories that I have found so far that our friends will be listening to … both individuals have their own unique path toward healing. So with this experiment, Brigid, I’m going to be the reporter this time.
Cathy: Instead of the host. You are the host. I’m the reporter. So I found …
Cathy: I know, right? So I have found a couple of stories. The first story is going to be with Michael Bischoff.
Brigid: Yes, Michael.
Cathy: And wow! Michael is this amazing individual who’s from Minneapolis, Minnesota. I know you know him.
Brigid: I do. And he’s just … he is just love. He’s sort of a tall, slender, loving man. Can I share a story about him?
Cathy: Yes, please.
Brigid: You know, I met him several years ago through some work that we had done with the University of Minnesota. Michael called us because he had been a CaringBridge user extensively, but he had a few opportunities for improvement for us. And he wondered if we would meet with him. Now being an internet business, we don’t often have people physically come into the CaringBridge office too often. So we’re like, “Sure.” So here it is on a very cold, almost a zero-degree February day. This tall man walks into the office wearing a bike helmet. Now, Michael had biked 13 miles to our CaringBridge office to give us some feedback and some “loving criticism,” as I call it. Now, this is after his diagnosis of glioblastoma. This is after he had a craniotomy. So this man is on a mission to help people find their path to healing. And we so treasure him.
Cathy: Michael is a very special person who has been living with brain cancer far beyond the normal survival rate for that type of tumor. But the thing that intrigues me is that Michael has done far more than survive with cancer. He’s been thriving, even though it has been a very difficult process at times. He’s done a lot of public speaking about his journey to healing and wholeness, especially when it comes to the relationships he has with medical professionals. Now, this is from an event in Shakopee, Minnesota, back in 2018.
Michael Bischoff (husband, dad, diagnosed in 2015 with glioblastoma, the most aggressive type of brain cancer): I think all of us can do both of those things, both the deep listening that’s so reverent and that honestly expresses both what’s most painful and what’s most sacred for us. And I think that’s done through honesty and vulnerability of both care providers and those being cared for. And we can all lead to that transformation. Well, just as Bruce called you out and pulled your vulnerability into his conversation with you. I think that’s all of our jobs to call out in each other, especially doctors. So my oncologist says that his job is to keep up tall professional boundaries. And I tell him my job is to jump over those boundaries into your heart.
Cathy: Michael Bischoff’s journey started at the end of August of 2015. He was 44 years old, a father of two kids and had, at that point, been in good health. His beloved wife, Jenny, picks up the story.
Jenny Larson (mom and wife of Michael Bischoff): So Michael was having headaches over the course of about a month … very severe … and throwing up and feeling horrible and trying to figure that out. Finally he had an MRI and the neurologist was like, “Well, we’ll just do an MRI to maybe rule stuff out and make sure everything’s fine.” And then he told Michael at the end of that day, “Come back tomorrow and bring your family.” And so we knew that there was something going on. And I believe that we rode our bikes to this appointment.
Michael: My amazing wife, Jenny, and I were sitting in a neurosurgeon’s office.
Cathy: This is Michael retelling the story of his diagnosis during a public event, sponsored by CaringBridge back in 2017. As he tells his story, Michael and his wife, Jenny, were waiting for the neurologist’s diagnosis.
Michael: So we’re meeting with him for the first time. We’re sitting in his office. He comes in and he’s got my MRI image of my brain on the screen, and he said, “There’s a big thing in there. It needs to come out. I can do it in two days or two weeks. What do you want?”
Jenny: I think, maybe, he also blocked some of those things out. But I remember seeing that image of the brain tumor and it was very obvious that there was a tumor.
Michael: The surgeon came back in the room and we agreed to do surgery in two days.
Jenny: And then we kind of, in some blurry fashion, managed to ride our bikes home and just everything changed. Four years later, it’s kind of hard to remember what life was like before.
Cathy: Brigid, it’s a common refrain heard from those living with life-changing illness, patients and caregivers alike. Michael Bischoff’s life definitely changed. The tumor buried in his brain is the most aggressive kind of cancer.
Michael: The doctor was as sensitive and skillful as possible in asking me if, and when, I wanted to know the statistics about average survival for this diagnosis. I said I didn’t want to know at first. In the next office visit, when I did finally say, “Yes, I want to know,” the doctor drew me a nice graph, a curve, that showed, well, he said, “Depending on which study you believe, average survival is between 15 and 18 months.” I think he said he tended to prefer 18 months. I preferred it, too. I was still overwhelmed and in shock.
Cathy: Well, who wouldn’t be overwhelmed after receiving news like that. Michael was on what he calls “the cancer roller coaster.” There was chemo and radiation, laser surgeries, and more chemo, and more radiation, clinical trials. But in addition to all of that, Michael decided to actively work toward healing, even if a cure is not available to him.
Michael: I think of healing, generally, as the movement toward health and wholeness. And I see the foundation of all healing is in relationships. And relationships with friends and family and others in relationship with health professionals and other healers in relationship with the natural world, with the divine. And I think all forms of healing come through relationships in some way. And the practice of cultivating those relationships in love, I think, is always the foundation of the practice of healing. Before my diagnosis with brain cancer, I thought healing and people talking about it was touchy-feely, weird stuff. But now, if I was talking to someone who was just diagnosed with a large health problem, one thing I would say is that healing is not only possible, but it’s inevitable. And that doesn’t mean that there’ll be a cure, but it does mean, to me, that there’s always a gift of healing.
Michael: Our job, as I see it, as people seeking healing, is to pay attention to what kind of healing is being offered and to step toward that. Open up to that. And I think it’s a paradox with seeking healing for physical problems like terminal brain cancer, that nothing we do in most cases can guarantee physical, full healing. But I believe, more and more with each day of unexpectedly being alive, that if we pay attention to what healing is being offered and whether it’s emotional, or in some relationship, or in our diets and our activities. If we’re true to those steps, it will be the best thing we can do for our physical health and recovery. But we can’t make it happen or know that it’s going to happen. There’s always healing being offered, and I can move toward it. And I think that will always benefit our physical health, too, but it won’t guarantee a cure.
Michael: I’ve been taught by multiple friends that healing is very possible without a cure. And that healing is very possible, even while we’re dying. And healing is very possible while we have no idea what’s going to help us in our physical illness. Healing is always possible.
Michael: So one time I was in the hospital. I had spinal fluid leaking out of my head, which is not good. And so the doctors stuck a tube up my back, and threaded it along my spine to drain spinal fluid out of my back to ease the pressure on my head. And during that time, there was a woman cleaning my room in the hospital. Her name was Pemma. She told me a story about her son, when he was a teenager. He had a serious cancer and she took him to a monastery in Tibet, where they’re from. And they prayed for him and she said he was healed. Then she walked over next to me in my hospital bed and she looked at me, and she said with authority, “Prayers and doctors can work together.” And she breathed this peace and trust into me at a time where doctors could not give me reassurance and peace.
Michael: I think what she illustrated for me is that we can’t make healing happen. And we usually can’t even predict when it will happen physically, or emotionally, or in relationships. But what we can do is we can make a hospitable space where healing can come as a gift of grace. So I think grace is receiving what’s being offered to us generously, which we can’t control or grasp, but we can open to both throughout ourselves and others. And so Pemma, who was cleaning my hospital room, was helping create this hospitable space, literally in my room, as well as emotionally and spiritually for a gift of grace to be received both with her words and her presence. And my spinal fluid did stop leaking. And I think that her helping create that environment where grace can be received is one reason it stopped.
Michael: Pemma, who was cleaning my room, was at least as valuable to me as the brain surgeon, and the nurses and doctors. I found an opportunity a couple of months after to go to her team meeting in the hospital basement, with all of the people who clean rooms in the hospital. And I told her team the story of how she came in to my room and what it meant to me. And I was crying as I did that. And Pemma was there and, also crying, and she and I hugged. And her supervisor then encouraged everyone on her team to stand up and give her a standing ovation for the impact she had on me. So I think making hospitable space for grace to occur and healing to be received can happen from any position or angle, whether it’s a brain surgeon, or someone cleaning the room, or a friend visiting. I think any of us have the opportunity to welcome grace in and miracles and healing can happen.
Cathy: Healing for Michael Bischoff comes in many forms: prayer, connection with others, and nature. One chilly day in the fall of 2019, I had the opportunity to hike down a steep hill with Michael to a place along the Mississippi River in South Minneapolis that he tries to visit every day.
Michael: We are at the edge of the Mississippi River next to my favorite tree that’s leaning into the river. And our butts are getting sandy.
Cathy: They are. But why do you like it down here so much?
Michael: I like to sit and watch the river go past. And I like to look at my favorite tree friend here and listen to the wisdom of that tree, and feel connected with other people who have died or are in other places. And I find it helping me relax as well as chilling out, as I have brain cancer, and think about the possibility of dying. And I feel like the river and my tree are two of my favorite healers and I like to receive their treatment.
Cathy: How does that manifest to receive the healing power of nature in this river and the trees and the animals nearby?
Michael: When I was first diagnosed with brain cancer, a friend of mine told me about a prescription he had for me, which was from research in Japan about what’s called “forest bathing.” And my friend said his prescription for me was to sit in the forest or next to the water at least 30 minutes a day. He said it increases your immunity and decreases your stress and all kinds of other things. So I started just doing the simple thing of trying to spend at least half an hour here, every day. And I’ve been doing that for the last four years. And I’m still alive.
Cathy: This is a beautiful place. I can see where you gain strength from this place. Yeah.
Cathy: So let me ask you about healing. Because when I first met you, we’d been talking a lot about how one heals and what that looks like for people. When you were first diagnosed to the present, how has your concept, your understanding, of healing changed?
Michael: I want lots of kinds of healing, including: I want to stay alive and not die from brain cancer. I haven’t given up on that one. I want healing that keeps me alive, preferably to cure me from brain cancer. But, I think, no one has discovered how to do that yet. So at least I would like healing that keeps me alive and full of life for now and while my kids are alive as kids. I think there’s many other layers of healing to that. After I first was diagnosed with cancer and realized that most people die pretty quickly from the brain cancer I have, I realized what’s more important to me is not how long I live, but how much I can love and let love move through me while I’m alive. Not how many days I live with brain cancer.
Cathy: Michael will tell you that his ideas around healing keep changing every day. And that’s partly based on his health and prognosis. His wife, Jenny, finds her definition of healing has also evolved.
Jenny: When this all started, I don’t know how much I thought about what is healing. I mean, it wasn’t something in the center of my life. And I think if someone asked me, “What was healing?” I would maybe say more like, “Oh, you know. You get better from an illness or whatever.” But I feel like now it’s so much bigger. I feel like it’s not necessarily a cure. It’s not necessarily being fixed. But it’s a whole-body thing. It’s a spirit thing and it’s relationships and it doesn’t even necessarily end when somebody dies. I think it can keep going. And I feel like I’ve been learning about healing myself and learning about my own patterns. I feel like I’ve also been slowly healing in this process.
Cathy: Where do you find your strength?
Jenny: Well, I find my strength partly from Michael, and partly from my kids. And because I’m doing this for all of us, because I love them and because I want to … I don’t know. It’s not just a one-way street. It’s not just like I’m giving. I’m also receiving a lot from my kids and Michael, and from friends and family. So that’s one place I get my strength. I feel like there’s a sense that things are going to be OK, even if they’re not always OK. And I don’t know where it comes from, honestly. But it’s there. There’s some kind of love that’s holding us all together that is under the surface. It is all of our connections. It’s relationships. It’s love.
Michael: When I found out that the cancer in my brain was growing again, a friend of mine responded to my post about that on CaringBridge, by saying that when she heard that news, she sat in her rocking chair and wept with compassion, for what my family was having to carry. And that as she was crying, she said at one point, it shifted to a feeling of a smile. She said she felt a tender smile in imagining that my family was resting in a field of great love. She said she felt moved and grateful for the love that was holding us. I sometimes feel and receive that field of great love holding me and my family. But not always. So when my friend, through her CaringBridge comment, reflected that back to me, both the sorrow as well as that larger field of love holding us, it helped me feel more of the sorrow and the gratitude for that love that holds us.
Brigid: That is just so powerful and so profound. And they are so special … Michael and Jenny, and their ecosystem, again, they’re just so special. And we witnessed this from our many CaringBridge users. Cathy, this is why we’re working on these stories and trying to put them into a framework, so people can help find their path to healing. We’ve seen how Michael found his path, but our simple framework is really three things. It’s about either believing, which is around faith and spirituality. And we heard that from Michael. It doesn’t have to be a religious thing. It can be nature. It can be love. It can be connections.
Brigid: Belonging is the second piece of the framework. It’s about family. It’s about friends. It’s whatever tribe, if you will, that you belong to that can fuel you. And finally there’s “be,” or “being.” And it’s really around meaning-making. It’s how we derive our sense of purpose, our sense of fulfillment. And if we’re brave enough to confront these really difficult times, like Michael is, I think the love and support that comes back can give you more meaning. And while your life is never the same as it used to be, it is a life well-lived and well-loved.
Cathy: Well-said, by the way. And you know, in Michael’s story, what also leapt to the forefront for me were his comments about healing. You know, he talks a lot about healing, and that healing is always possible, even if a cure is not.
Cathy: So because I’m the reporter here, I went off and talked to the head of the University of Minnesota Center for Spirituality and Healing, Dr. Mary Jo Kreitzer, about that concept. And this is what she said.
Mary Jo Kreitzer (PhD, RN, FAAN and founder and director of the Earl E. Bakken Center for Spirituality and Healing at the University of Minnesota):
Well, healing is really about wholeness. It’s about integration of body, mind and spirit. Curing is eradication or amelioration of disease. And so there are times that people cannot be cured, but they can achieve healing or wholeness in their life. So that, for some, is a paradox. But healing and curing are actually very different concepts. So as people are moving toward death, it’s possible to heal, not physically, but maybe in a deep, spiritual way.
Cathy: Is healing always possible? That seems like it could be difficult for someone to get there depending on each individual circumstance.
Dr. Kreitzer: That’s a great question. And I do feel that healing is possible. I would say, Cathy, healing is not always possible. Healing is actually one of those concepts that, while there’s been writing about healing and there has been some research about healing, I think it’s a little bit like a mystery. It’s hard to quantify it. And if you interviewed six people and asked them what healing looked like to them, you would probably hear very different things. As a nurse, I’ve had the opportunity to work with people during both joyful and profoundly difficult times in their life. And one of the things that has really struck me is sometimes in the midst of what seemed like just inextricably, awful situations, people can emerge with a sense of healing and wholeness and integrity.
Cathy: So healing is possible.
Dr. Kreitzer: The second thing I’ve learned about healing is that it’s a process and it takes time. And sometimes people will talk about getting over a loss. I don’t think people get over losses. I think they get through losses. And I think one of the things I’ve noticed as I’ve worked with people is that when people experience great losses in their life, sometimes the only way to get to the other side is to face the fear, the grief, the loss head on. And sometimes in facing it, people can get to a different place. Life is never the same. It’s not like people get over it. Life can still be good, but life is different.
Dr. Kreitzer: I guess the final thing I’d say about healing is that it’s a very individual process. So what is healing for one person, which might be their religious faith, that may actually not be healing for another person. So you look at all the different paths to healing. There are certainly are spiritual paths and religious paths, but some people find writing or music, or being in nature, or just being with family and friends, that those are the things that contribute most to their healing.
Cathy: And that was Dr. Mary Jo Kreitzer with the Earl E. Bakken Center for Spirituality and Healing at the University of Minnesota. So what’s the takeaway from Michael’s story and Dr. Kreitzer’s comments? Well, I think that healing is possible, even if a cure is no, and healing means different things to each individual. But it’s a journey toward wholeness in mind, body and spirit. And there are many paths toward that goal with the journey, unique to each of us.
Brigid: We would love feedback from folks and from our work being done. People can come to caringbridge.org and we hope that people will send us cards, letters, emails, Tweets, posts, whatever, because we want to learn. Is this helpful? And how can we be more helpful as people go through health journeys?
Cathy: Now, remember we have a second story coming up. So people should just be aware of that. We’ll send it out and we want your feedback on that, too.
Brigid: Yes. See you next time.
Cathy: All right. See you later. Take care.
Cathy: That episode was recorded January 9th, 2020. We are heartbroken to tell you that Michael Bischoff died on February 10th, 2020. He was 49 years old. Michael leaves behind his wife, Jenny, and two children, Isaiah and Grace, other family members, and many, many friends. As his obituary said, “Michael loved being a dad more than anything. He also loved to ride his bike, take long walks by the Mississippi River, ask hard questions, and travel to new places. Michael Bischoff is off to his next adventure.”
Cathy: This episode was produced by Palisade Productions. The editor is Jennilee Park. For more information on the work being done by CaringBridge, please visit the How We Heal series.
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