Michael Bischoff and Jenny Larson, with their children Isaiah and Grace
Michael Bischoff started having headaches at the end of August 2015, right when summer turned into autumn. As the weather cooled, the headaches grew more intense and were joined by spells of nausea. Probably migraines, he thought, and went in for an MRI, where he noticed a concerned look in the tech’s eye. On September 24, his neurologist called with the difficult news: buried in the right side of Michael’s brain was a tumor the size of a golf ball.
Life Took on a New Shape
Very quickly, Michael’s life took on a new shape, and he faced the new unknown with an energy not unusual for the 45-year-old community organizer and father of two. Just four days after that first MRI, Michael rode his bicycle through the dark morning to Abbott Northwestern Hospital in Minneapolis, where he checked in for major brain surgery.
His surgeons removed most of the tumor, and praised him for bouncing back more quickly than most. Michael had none of the cognitive or physical side effects that he and his family had feared. Within days, Michael was posting updates and snapshots on his CaringBridge website in his typical style—tender, honest, and a little goofy. (His first post, penned the day after the MRI, was titled “The Adventure Begins”).
Within a week, the biopsy results were in: glioblastoma, an aggressive cancer that spreads quickly. Michael would need radiation and chemo to prevent what was left of the tumor from spreading, and even then the prognosis looked grim. His oncologist drew a chart with a large curve in the middle to represent the median survival rate: 18 months.
New Kind of Wellbeing
The emotional reaction to a serious diagnosis can be crippling. People exhibit a “broad spectrum of responses, depending on the person and their circumstances, but surprise and shock are usually prevalent,” says Frank Bennett, founder and program leader of the Living Well/Dying Well initiative at the Center for Spirituality & Healing, at the University of Minnesota. “Most of us assume that a life-altering diagnosis will only come up late in our life.”
This assumption arises from commonly connecting wellbeing and physical vitality. For many, wellbeing simply means freedom from physical ailments, the promise of a long life with minimal pain. But what happens when that basic idea is challenged? Is wellbeing possible when physical health is not guaranteed?
‘Flourishing’ Despite Challenges
“We all know that there are people with excellent health that would not describe ‘wellbeing’ in their lives—and we also know people who have profound physical challenges, yet they demonstrate wellbeing and human flourishing,” says Mary Jo Kreitzer, director of the Center for Spirituality & Healing.
Each Little Step
Michael falls into the latter category. While his reaction to his diagnosis certainly included fear, grief, and shock—he still sounds genuinely surprised when he talks about it—the news also opened up a wellspring of gratitude. “Each little step I take in recovering from surgery and radiation is even sweeter now,” he says. “At first I wasn’t able to bike, but when I started again, it was so pleasurable knowing that it’s not a given. And speaking and remembering—things that were very possible to lose in the surgery—I can still do. So there are so many different kinds of wellbeing that I’ve experienced since the diagnosis that I didn’t appreciate before.”
Thin Place Between Joy and Grief
For Michael, the journey toward wellbeing is an ongoing process that’s physical, spiritual, emotional, and relational. He hopes for a cure, and for a long life, but his main focus is on finding wholeness in each moment. The things he loves most—biking through the snow, cuddling with his family, taking long walks along the Mississippi River—he considers just as important as radiation and chemotherapy in his healing process.
“I’m in a thin place between life and death, between receiving and giving, between right now and the eternal, between joy and grief,” Michael wrote in his CaringBridge Journal. “My vocation now is receiving love, acknowledging that, and allowing it to keep moving.”
Facing and Embracing Fear
And part of finding wholeness is facing—and embracing—the grief and fear that comes with a serious health crisis. Michael, who had spent years cultivating relationships as a facilitator for community sustainability and had several large projects lined up, deeply lamented the loss of his career after being put on Social Security Disability. His work was intertwined with his sense of purpose; without it, he feared a loss of the meaningfulness that had once made his life so rich.
His CaringBridge Journal became a conduit for these explorations, allowing him to receive community support as well as talk openly about despair, which he allows to move as freely as joy. Michael writes frankly about the sadness that accompanies the realization he is no longer the person he used to be—an active community organizer, an international traveler with a head full of hair, a husband and father who knew for certain he would grow old with his wife, Jenny, and see his children become adults.
Listen and Respond With Kindness
Michael’s ability to handle the intensity of his diagnosis can be partly attributed to his dedicated spiritual practice. His longtime involvement in a Quaker community, as well as his mindfulness meditation practice, have deepened his ability to listen and respond with kindness to whatever arises over the years—a coping skill that can gently shape the way that illness affects life.
Bennett, a chaplain with years of experience with people living with life-threatening illnesses, describes the 360-degree healing role of spirituality: providing clarity to look ahead with hope, a mirror to reflect upon the past and find reconciliation, and an anchor to help stay present and savor the moment. Spiritual practice can be empowering, too, “reminding us that we are still driving our life and choosing our route for the rest of the journey, no matter what happens.”
Staying Calm in the Middle of Pain
And Michael has had plenty of opportunities to put that philosophy to the test. After just two days of chemo and radiation, the incision from his first brain surgery began to leak spinal fluid, and he was sent back to the hospital for a week, where he lay with a lumbar drain in his spine. The insertion of the tube was an extremely painful procedure, during which he found solace by focusing on the love and prayers of support he knew his friends were sending.
Over the course of the following week, as fluid drained from him, Michael noticed the small moments of wellbeing that kept popping up—the trust that developed between him and the nurse practitioners, his wife’s hands on his feet as they removed the tube from his spine, his own ability to stay calm in the middle of physical pain.
‘Not My Previous Picture of Wellbeing’
“Being on my back for a week in the hospital wasn’t my previous picture of wellbeing,” he laughs. “I love to move around and be active, and be with my kids, and it was sad not to be able to do those things. Yet that week in a hospital included some of the highlights of my life so far—the connection with other people, the creativity, the spiritual experiences I had. Even though it was miserable, I felt a lot of wellbeing at the same time.”
This kind of positivity in the middle of a painful medical event isn’t typical in American healthcare, where a grim focus is placed on the removal of physical disease and the lengthening of life. “Many healthcare providers have historically been taught to treat a body part or symptom, and have not always considered the whole person,” notes Kreitzer. They simply diagnose and administer treatment—and the patient is left to figure out how the rest of his or her life fits in.
A More Empowered Patient
A project manager at heart, Michael is by nature a more empowered patient than most, and with the urgency of a glioblastoma diagnosis he felt especially called to create his own healthcare experience. He incorporated integrative therapies into his treatment, including qigong, Healing Touch, naturopathy, imagery, and prayer—which didn’t always land well with a few of his western doctors, some of whom reacted to non-medical interventions with hostility.
Powerful Connection With Dr. Lund
Michael found unwavering support from his primary care doctor, Peter Lund, who was careful to balance his own preference for western-evidence-based treatment with respect for Michael’s own path to healing. In fact, Michael credits Dr. Lund, a longtime neighbor, as one of the most important relationships in his healing journey. The two have developed a powerful connection not often seen in primary care—Dr. Lund rushed to that first appointment with the neurosurgeon to help advise a bewildered Michael and Jenny, called colleagues to get second opinions on Michael’s case, and doesn’t shy away from the raw vulnerability that comes with talking about death.
Don’t Postpone Joy
Michael grows emotional when he talks about how important this relationship has been to him. The gratitude Michael has for the deep care he’s received, he says, has contributed to his healing as much as any medicine. “The first thing Peter said when he learned about my diagnosis was: ‘Don’t postpone joy. Savor every moment,’” says Michael. “That’s been really meaningful for me.”
Making Difficult Choices Quickly
In January 2016, Michael was fitted with a skullcap called Optune, an experimental treatment that treats brain tumors by emitting electro-magnetic waves. Deciding to try the cap wasn’t an easy decision, but making difficult choices quickly with limited information is something that people with serious diagnoses learn to do. With glioblastoma, there is limited data about what treatments will be successful. It was either Optune or enrolling in a clinical trial with a new vaccine—both options which carry risk, and Michael found “confusing and horrible.” Dr. Lund helped him navigate the choice, and together with his family, Michael chose the cap.
His family even made a celebration out of it: Michael sat down in his kitchen as his wife shaved his head, while his son, a budding videographer, mixed footage of the event with music and turned it into an upbeat music video. The cap is like something out of a science fiction movie—transducer arrays adhere to Michael’s skull, with long trailing wires that lead to a bag he carries everywhere. The contraption is clunky and awkward, and sometimes his head heats up while he’s sleeping, causing the machine to beep and wake him up.
Intentional Focus of Energy
But Michael continues to intentionally focus his energy on the things that bring meaning to his life—sharing his story of healing with other patients and healthcare providers, developing a photography book and show with his wife, preaching, and, most importantly, curling up with his family on the couch, listening to Jenny read while their rescue dog, Bella, sleeps nearby. He is a ceaseless advocate for finding the beauty in the small stuff—like filing his family’s taxes, something he wished, shortly after the diagnosis, to be alive and healthy enough to do. In this way, the small things in Michael’s life have grown to become one enormous celebration.
That’s not to say he doesn’t feel anxiety and sadness about what lies ahead, nor is he immune to the side effects that come with chemotherapy and radiation. Some days the treatment exhausts him physically. Throughout the spring and summer of 2016, he spent multiple hospital stays trying to manage severe pain, high fevers, and meningitis. He cries sometimes when he is talking about fear and also when he describes the gratitude he feels for the healthcare providers who have shown such compassion—from the steadfast support of his primary care doctor to the small comforts the radiation technicians offered when they asked him, as his head was bolted down to the table, what else he had planned for the day.
Let’s See What Love Can Do
In those first confusing days after Michael’s diagnosis with glioblastoma, his friend Emily, a cancer survivor herself, hosted an event for him called “Let’s See What Love Can Do.” More than a hundred friends and community members poured into a rented church and held what they dubbed a “healing extravaganza”— singing, dancing, and other displays of love and talent. “It was transformative for all of us,” Emily says.
“There are people like Michael, who, in the midst of a profound health challenge, continue to search for meaning and a way to give back,” Kreitzer says. “I have been deeply moved as I witness how Michael invites others to journey with him. It becomes deep learning for all.”
Wellbeing as a Flowing Gift
After the event, Michael shared a powerful image from the event on his CaringBridge site: a crowd of a hundred people all reaching in toward the center, where Michael stands, his head bowed in gratitude, a small smile on his face. Everyone has a hand on someone else’s shoulder.
It’s hard to tell who is actually receiving the gift in this picture—whether healing is something that moves from the community to the sick person, or whether it’s the other way around. Or perhaps it’s a combination of the two—wellbeing as a flowing gift that emerges and moves freely where it’s given room to thrive, offering itself to anyone who stops to listen.
Here When You Need It
Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website, where you can share updates and receive encouragement and support from your community.
This article first appeared in Mandala, a publication of the Center for Spirituality & Healing at the University of Minnesota. The article and video of Michael Bischoff’s health journey, are republished with the permission of the Center for Spirituality & Healing.