by Wayne Jonas
“It is pretty bad. Sometimes it takes me an hour to loosen up and have enough energy to get out of the bedroom”—a common situation with fibromyalgia.
Gloria was referred to me by her primary care doctor because she wanted to do better and heard that I prescribed fewer drugs than other doctors. As we went through her healing-oriented assessment, I found very little amiss in her life. She had a comfortable clean house and a “nice husband who works a lot”; she tried to eat right and walk outside every morning. She went to Catholic mass each Sunday and prayed daily—“for others,” she mentioned nonchalantly. Her ten-year-old grandchild (she had five grandchildren who lived some distance from her) had come to stay for the summer. He was a “nice boy, very active, and in camp most of the day.” A year previously she had gone to an acupuncturist that her health system covered, which helped her back pain for a while, but then her insurance stopped paying for it. “It did not seem to help my fibromyalgia or my tiredness,” she said.
When we got to questions about her social and emotional life, I noticed a shift in her voice. “Do you have good friends you spend time with?” I asked.
Her voice softened as if she did not want me to hear. “Well, doctor,” she said slowly, “to be honest, ever since my retirement I have missed everybody. I was at the club for forty years, rarely missed a day. I miss it now. But they are all so busy. I don’t want to bother them.”
Gloria, it turned out, was lonely. And she was not alone in that. Each year more than sixty million people in the United States suffer from chronic loneliness. It is common after retirement when routine interactions and friendships at work are suddenly stopped. Although her medical diagnosis was fibromyalgia, her problem was loneliness. Was it a coincidence that her chronic pain and frequent visits to the doctors began soon after her retirement? While I had no objective test that could prove this connection, I did know that reconnecting her to a meaningful social network would help her heal. But how to do that? We needed to find a group that Gloria could join.
She seemed to read my mind. “I went to one of those chronic pain support groups, but I didn’t like it. Everybody was so sick. I felt worse afterward.”
Back to the drawing board, I thought.
“Well, Gloria,” I said after a pause. “It seems to me that you would benefit from finding a place to go each day to work with others and do things that are meaningful for you. Let’s think about how to do that.” She agreed.
Gloria ended up volunteering at a church food pantry and eventually running it. Her pain improved by 80% in about six months. From the day she started, she said she felt better, and gradually her energy returned. My guess is that she was largely cured. Her recovery might have been shortened and even more effective had she access to a clinic like Dr. Jeffery Geller’s.
DR. GELLER
Dr. Jeffery Geller is one of the world’s experts on healing chronic illness through social connection. He does this through group visits conducted at a community health center in Lawrence, Massachusetts—the poorest county in that state. Some of his groups gather for specific illnesses—like for weight loss, diabetes, cardiovascular disease—or chronic pain, like Gloria had. Some of his groups are to change behavior—like for fitness, cooking, or stress management. Many have no theme other than improving health and well-being in general. But Dr. Geller has a different agenda from all of that.
“What I am really treating,” says Dr. Geller, when only slightly pressed, “is loneliness. More people get better, and faster, when I focus on helping them with that than if I only treat their disease or try to change their behavior.” He went on to tell me how he came to this. “At first I was using group visits so I could treat more patients. The demand at the clinic is high and our reimbursement is low. Paying for individual instruction in wellness and lifestyle was not possible. Many of them need help with the same things—diet, exercise, stress, medication management—so why not do it as a group?”
At first, Dr. Geller explained, setting up disease-focused groups seemed the right approach. But then he realized that, like Gloria, the majority of people with chronic illness didn’t like going to a group where everyone seemed sicker or more depressed than they were. In addition, many were also lonely, and that loneliness was preventing them from healing.
“Even if they were not lonely,” Geller said, “connecting with others was not a bad thing for anyone. It’s like social exercise. Nobody can pay for psychotherapy or gym membership anyway. The patients who come to this clinic are poor, and life has not been filled with opportunity. Many of them don’t even have the five-dollar copay we ask for. So I decided to start a bunch of groups based not on my desires or their medical diagnoses, but on their preferences and friendships. If they join a group they like, they stick with it. If, at the same time, they get guidance from me, our health coaches, or each other to help change to healthier behavior, they get better. And best of all,” Dr. Geller noted, “participants become empowered to be healthier because they are supported by others and others need them. They feel important again.”
And that is exactly what happened. Groups began to form that did not conform to the usual medical categories the health care system was trying to treat—like weight loss, cancer support, pain, or post–heart attack. Instead, groups were formed around friendships. Often these took the form of youth groups, men’s or women’s groups, or groups of mothers and seniors. Some combined these categories because the members just got along with each other. Says Dr. Geller, “patients who found and attended a group they liked not only made friends, but their health improved faster than in disease-based groups. Now many of the groups are run by other patients—with help from our staff.”
Dr. Geller and his staff have set up a way to tap into the healing power of the social and emotional dimension for people with few other resources than their ability to find friends and the common human love that accompanies it. It would have been the perfect solution for Gloria and many like her.
THE CAKE
The tools used and exact path in a healing journey are different for everyone. Yet the basic processes are the same. Bill gave up seeking cures, then realized the childhood source of his pain and eventually found a path to self-care that kept him largely pain-free and functioning. Jeff continued to smoke after joining a group to help him quit—but he eventually succeeded by substituting a healthy behavior for an unhealthy one. Maria jumped right into the behavioral change without preparation and planning—and suffered from it. Later she found a way to connect it to something more fulfilling in her life. That is when it became a long-term solution and lifted her out of sadness and struggle—and improved her diabetes. Susan and Clara began their journeys in a different dimension: the space they lived in. Susan also added tools from the social and emotional dimension of healing. Accessing the love and care of others helped her recover during her most difficult time in the curing of her cancer—when she felt she could not go on. And it came in an unexpected way.
About the tenth week of Susan’s weekly chemotherapy, a deep fatigue hit her. The word fatigue does not really describe it adequately. It’s hard to describe using any language. It’s like having a hundred-pound millstone around your neck and being thrown into the bottom of a river. You can move around a little bit, but you can’t get back to the surface. The amount of oxygen is low, and the effort it takes to move is huge. You know you can’t get back to the surface, so you are just watching and waiting as the world goes by. Sharks and other scary animals seem to be swimming nearby in the murky water. I too felt her fatigue, especially toward the end of the day when there was a lack of will to even speak. It was more than the fatigue we expected and she’d had from the start of chemotherapy. It kicked in most drastically in the middle of chemotherapy and stretched out for several weeks and into the summer.
On this particular Fourth of July, we had four generations of family with us, including my mother and the grandbaby. But I was worried that she would not be able to participate in one of he
r favorite family holidays—the Fourth of July and especially the making of The Cake.
This was not just any old cake—it was The Cake. It was a cake Susan prepared for the family gathering every year for over thirty-five years. Everyone looked forward to it. It was, of course, a depiction of the American flag. Susan had been making this cake since before we were married. She usually served it after the family dinner when all were gathered to celebrate Independence Day—a ritual revealed right before the fireworks. Originally, The Cake was made from a cake mix, with thick cream cheese frosting, and decorated with blue and red food coloring and sprinkles. Not the picture of healthy food. Over the years she had substituted healthier ingredients such as blueberries for the starry field and strawberries for the red stripes. She also began to make a light whipping cream frosting with healthier fat and less sugar. I tried to encourage her to use whole grains in the cake mix, but that never quite worked, and I must admit it didn’t have the same result as the good old Betty Crocker cake mix, so we ended up sticking with the latter.
But on this particular July Fourth, Susan had just received her tenth weekly chemo treatment and was very tired and anemic. She had not cooked for weeks. Still, despite how she was feeling, she decided to make it.
My ninety-year-old mother, who has moderate dementia, had come to visit, along with my sister and her daughter. We had the core family and more—it was the first July Fourth also for our new grandchild. Despite her dementia, my mother responded with tremendous joy when she saw her great-grandbaby, a reaction that was infectious to us all. Perhaps it was this joy, and that all of her family was together, that motivated my wife to make The Cake. Others helped. Susan made the cake part with the Betty Crocker mix, and our daughter prepared the whipped cream frosting and decorated The Cake while the others played with the baby.
After dinner, Susan placed The Cake on the table to an enthusiastic reaction from everyone. My mother, who had never seen The Cake before, reacted with more great joy.
“It’s beautiful!” she said. “I’ll have a big piece.”
My sister, who usually goes sugar-, gluten-, and dairy-free, ate three pieces. My son, normally not a cake fan, had two; and I—remembering the rabbits—had one myself. The kitchen was cleaned up. We went outside and shot off fireworks and shared music together. When my mother left a couple of days later, her final words were, “Thank you for having me. It was such a joy to see the baby.” Then, after a pause that made us think she was confused, she turned to Susan and said “And oh, thank you for that cake!” There was an understanding in her eyes, rarely seen any more with her advancing dementia.
The next day we saw a clear change in Susan. She began to make travel plans. She wanted to go to a wedding we’d been invited to; previously she had been noncommittal, but now she looked at the calendar to plan the trip. She started talking politics again—something she loved. She mentioned walking the Camino de Santiago again, and planning a visit to see her mother and family in Florida the next winter. She spoke of taking care of her grandchild more fully next spring. She considered resuming her volunteer work teaching English as a second language. The Cake had become a healing agent and helped turn things around. It didn’t change the physical side effects—she still had the fatigue, her red blood cell count and hemoglobin were still low, and her hair kept falling out—but after The Cake was made and served, she recovered something she had lost during the treatment. It was something even more fundamental than her hair, her toenails (which she also lost) and her white blood cells. Her soul was returning—and along with it, the joys of her life.
CHAPTER 8
Finding Meaning
How mind and spirit heal.
From birth to death, we humans are constantly trying to understand and make sense of the world. We are meaning-making machines. But unlike machines, we operate in nonrational ways, most of which occurs outside our awareness—even while we sleep. These attempts at sense-making continuously take in information and compare it to both past experience and the current context, determining how to respond. That response is triggered (or not) depending on subtle judgments we make concerning our safety, the social situation, and our very survival. We absorb and integrate that information from many sources at once—our body, sensory perceptions, relationships, memories, beliefs, and hopes—and use that information to create our universe and trigger biological responses.
Meaning is more like a thought field shifting between people and their environments, and it emerges from multiple interacting judgments rather than a single thought. What we believe and expect drives what we see and how our minds and bodies react. Stress, for example, with all its physical, emotional, and mental consequences, often has less to do with an actual threat than with what we believe the threat to be. Meaning is not simply held in the mind; it is constructed in our body by our culture.
The way to access our healing capacity depends on using tools from any of the dimensions of a person to find and construct meaningful responses. We have talked about three of those dimensions—the external environment, our behavior (including lifestyle and medical treatments), and how we use our emotions and social relationships. But the most powerful way we have for making healing work is our own automatic assumptions about whether healing is possible; that is, the story we, our family and friends, and culture tell us about the way things are and can be. In this chapter, I describe patients who have broken out of limiting assumptions and experienced dramatic healing. As in other chapters, I will show you how systems science documents how this healing works and can be enhanced in daily life. My patient Jake showed me how simple and powerful this process can be if we take control of it.
JAKE
Jake was on the edge of death—now for the third time. No one knew why. He had been a tobacco farmer all his life—as had his father and grandfather before him. They did not own the farm; they only worked it. He did not smoke, did not drink, and worked hard every day except Sunday. At eleven years old, he was pulled out of school to work the farm when his family needed extra hands and money to survive. That lasted the rest of his life, even as he grew up and started his own family. Farming, family, and church were the anchors of his life. Jake was a mild-mannered and deeply faithful man. A man of simple needs and little talk. Content with his life. His only major venture outside the farm was a short trip to Vietnam in the military. He was drafted and shipped over with an infantry division just before the end of the war. His unit left six months later and he was discharged back home. That was years ago. He had been healthy all his life, as far as he knew. But he rarely visited a doctor. Then, for reasons neither he or his doctors could explain, he ended up in the intensive care unit (ICU)—not once, but three times—each time on the verge of death.
Each ICU admission had the same pattern. Jake developed a fever and began to get short of breath. X-rays revealed a sudden, severe pneumonia—in both lungs. “A whiteout,” they called it. As the doctors watched in frustration, the pneumonia spread, eventually covering his entire lung fields and dropping his blood oxygen to dangerously low levels. The first two times that happened they needed to intubate him (insert a breathing tube) and put him on a breathing machine. Sputum and blood cultures did not reveal a cause. No bacteria were found, and viral levels were also inconclusive. The infectious disease specialist we called in assumed it was a virus and said Jake must have an immune problem. The immunology specialist we called in suspected the same, but no specific immune problem was found. Each of the first two times this happened the pneumonia lasted about six weeks—with two weeks on the breathing machine—and then it gradually cleared up. It took Jake about four months after that to fully recover and get back to work. Now, for the third time in as many years, it was happening again.
When I visited Jake in the ICU, the specialists were debating when to intubate him again. “Probably tonight,” said the internist in charge of his hospital care. His pneumonia was spreading as before, and his oxygen levels were beginning to drop. The oxygen
by mask was barely keeping him in the range needed for survival. Jake’s breathing became more labored by the hour, and he was tired. But the internist wanted to delay as long as possible. Being intubated is never a very good idea unless you absolutely need it. I sat by Jake’s bed to see how he was doing and explore what he was thinking of all this.
He was circumspect. “Well, Doc,” he said between labored breaths, “I guess…the Lord…has some purpose in it….Maybe…I done somethin’…bad or maybe…he just wants…to test my faith….We all have…our cross to bear.”
Did he have others pulling for him? I asked
“Oh sure, Doc…my family…and church prayin’…for me every day….I prayin’, too….most all day….nothin’ else to do…I guess.”
I was struck by how calm he was, even with his labored breathing, on the edge of intubation and possible death. Could he go through this illness again, having been weakened from the last two times? Then, mostly out of desperation, I had an idea. I tried to frame my proposal in a way he might find meaningful.