This book began with my own sudden lockdown into the world of the chronically ill a little more than a decade ago. One day in 2001 I was pulling my daughter in a red wagon to the neighborhood pool to swim my evening mile in the lap lane. The next day I was paralyzed, unable to use my arms or legs, in Johns Hopkins Hospital with Guillain-Barré syndrome (GBS), a disease similar to multiple sclerosis but with more sudden onset and a wider array of possible outcomes.
I slowly regained my ability to walk, drive, and tie my children’s shoes only to fall paralyzed with GBS again in 2005. The second recovery was harder, more tenuous. Although with miracle drugs and half a year of grueling physical therapy I could get down the steps and to my mailbox again, I still dealt with the neurological fallout of having had GBS twice—numb feet and hands, muscle spasms, poor reflexes, and a flu-like lethargy that no amount of sleep could cure.
Over the years other diagnoses unrelated to GBS had also thickened my chart: thyroiditis, more nerve damage, a clotting disorder, low red and white blood cell counts, bowel problems, slipped disks, and fevers of unknown origin. Every few months I’d end up back in crisis mode.
My team of specialists—some of the best on the planet—pulled miracles out of thin air for me time and again. A pacemaker made my heart tick, and a small, white pill kicked my thyroid into action each morning. Infusions of other peoples’ healthy immune fighter proteins, or antibodies—pooled from a thousand donors in a product known as immunoglobulin—replaced my faulty ones and kept them from turning against me.
The pattern was familiar: I would recover enough to drive, cook dinner, type stories on my computer again. And for that I felt lucky. But in the span of a decade I’d gone from being a healthy working mom who could swim sixty laps and stay up until two a.m. decorating a toddler’s birthday cake to being a revolving-door hospital patient—perpetually worried, exhausted, and often in pain.
Above everything, I longed for a normal, ordinary life: to play hide and seek or jump in the ocean waves with my kids again, to go for a brisk morning swim with my husband.
My team of specialists had pulled off miracle after miracle to keep me alive, but there was one cure they couldn’t offer me: they couldn’t give me back my capacity for joy. I felt robbed of joy.
And there was no Rx for that.
Something had been taken from me, and I wanted it back.
* * *
MEANWHILE, THE MOMENTS of everyday life that mattered most were spinning past. Life seemed to be increasing its speed while my own energy sputtered out. My best years with my children were almost behind me. My son was already in high school, my daughter nearly a teen. Soon, they would be gone. These were supposed to be my most productive and creative work years. And yet I was too tired and often in too much pain to enjoy, keep up with it all, drink it in. I was stuck not only in my body, I felt stuck in place, held back from the full life I’d always thought I’d create for myself, for my family. It was starting to be too late to hope I’d ever have more than a half-life. A maybe life.
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THIS BOOK WAS born out of that personal frustration. As a science journalist I did what I often do: searched for research trends that might give me insight as to how to solve the puzzle of my own life. For years, I’d been intrigued by the growing number of studies examining how our brain’s mental activity impacts our biology and well-being. But little of the science seemed geared to those facing chronic pain, discomfort, or illness.
Suddenly, however, the research had taken a quantum leap. Neurobiologists at the best research institutes in the world were finding myriad ways to peer inside the body and demonstrate how specific practices could activate robust healing responses in the brain, not only making us feel better but creating lasting biological changes in our physical body and cells.
One area of mind-body medicine intrigued me in particular: the relatively new and burgeoning field called psychoneuroimmunology, or PNI.
Psychoneuroimmunology is the study of the potent interaction between our psychological state of mind and our cellular and immune function. It examines the direct influence that states of mind—ranging from contentedness and well-being to joy and delight—have on the messages our brain sends to our immune system, our nerves, and our cells.
In simplest terms, the science of PNI—or what I have heard a few scientists call for simplicity’s sake, PIN, or psycho-immu-neurology—is the study of how our mental and emotional state, the very way we think and act, can maximize our ability to heal—and enhance our overall physical health.
Their findings were giving new credence to the idea that the mind-body connection plays a critical and even determining role in our physical condition. Moreover, research was beginning to focus specifically on helping patients with chronic conditions to relieve emotional and physical pain and suffering.
Emerging data was showing that those with chronic conditions who practiced specific mind-body approaches were able to move their emotional state away from anxiety and pain—and toward more joy and well-being. In the process, their levels of inflammatory biomarkers and stress hormones—those linked to a range of diseases including fibromyalgia, digestive illnesses, Alzheimer’s, autoimmune disease, depression, chronic pain, and cancer—profoundly decreased. They felt and did better.
This feedback loop made sense. You engaged in practices that helped to redirect your mental state away from anxiety, fear, and pain and toward contentment and joy. As a result, your inflammatory and stress biomarkers went down. As your mental state shifted, you felt some sense of physical relief. You felt you were somehow healthier. And, I imagined, if your levels of inflammation decreased, you were improving your physical health. No doubt, too, feeling any physical relief would help you to more easily move your mindset away from anxiety and pain, and ensure that you were more easily able to reenter that state of joy and well-being.
I felt certain it would for me.
I immediately saw how the science of PIN offers striking hope for those of us who long for a more pain-free existence. If feeling more joy and well-being and feeling better physically are so deeply and inextricably linked, then we owe it to ourselves to seek out strategies to improve our emotional state and maximize our brain’s own healing response. We owe it to ourselves to reclaim joy and reengage with the fullness of life and set that feedback loop in motion. I couldn’t wait to find out more.
I began by delving into stacks of peer-reviewed studies from the National Library of Medicine, reviewing recent talks given at major research conferences, and talking to the cutting-edge researchers in the field from Johns Hopkins to Emory to the National Institutes of Health to the University of California. Books began to pile up on my bedside table, including the research and writings of Daniel Amen, Tal Ben-Shahar, Ed Diener, Norman Doidge, Barbara Ehrenreich, Barbara Fredrickson, Daniel Gilbert, Jerome Groopman, Rick Hanson, Jon Kabat-Zinn, Eric Kandel, and Esther Sternberg.
The more I investigated how this connection works, the more excited I became.
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PIN RESEARCHERS HAVE found that specific brain-body approaches such as meditation, mindfulness, yoga, laughter yoga, specific breathing patterns, immersion in nature, and acupuncture, among others, activate connections in our brain that can induce a mindset of joy and contentment. Accessing this enhanced state of joy and well-being significantly alters activity in our brain, which shifts our immune responses, hormone markers, and levels of various inflammatory chemicals and messenger molecules that the brain uses to send information forth to the body.
When we are stressed, worried, or in pain, this complex network of biological messengers—what scientists sometimes refer to as the “floating brain”—increases the cascade of chemical messengers that break down our cells and corrupt our immune responses. When we move to a state of joy and contentment, we create quite the opposite effect: a seemingly invisible shield of positive “floating brain” activity that protects our cells, our immune function, and our health.
Depending on our state of mind, we trigger a positive floating brain or a negative one. Joy and feelings of well-being can protect our immune systems, and lack of joy and well-being can tax our bodies and deprive our cells.
For a moment the research suddenly seemed, on a personal level, as scary to me as it was promising: I knew what kind of white noise went on in my own brain most of the time.
When you are living with pain and fear over when the next medical shoe will drop, or ruminating over your latest blood work, or worried about how you will get on a plane at six a.m. to give a two-hour talk a thousand miles away in the midst of a flare that has you so exhausted that brushing your hair feels like finishing a marathon, your state of mind is triggering a negative floating brain.
Yet, I reminded myself, this new understanding of the science of joy and well-being provides us with a powerful tool that may be able to help us retrain our mind against this damaging PIN response, if we know how to harness it.
Examples emerge everywhere in the science.
For instance, when Tibetan Buddhist monks practice compassion, or loving-kindness meditation—a meditative technique in which we send loving thoughts to those we love, those we don’t know well, and even those we feel animosity toward—they generate intense gamma waves in their brains. These gamma waves are associated with higher states of mind in which we eliminate thoughts of fear, worry, pain. The most intense activity lights up the left prefrontal cortex of our brain, just behind the left side of the forehead—an area associated with joy, happiness, and positive thoughts.
Until now, we’ve assumed that the biggest payoff of such a brain-body practice is a better and happier state of mind in the face of life’s trials. What we haven’t understood is that firing up specific areas of the brain through meditation and other newly recognized approaches not only changes our thought patterns, it sets in motion a cascade effect, sending chemical molecules and messengers throughout the body that dramatically impact the action of every cell, system, and organ—and the course of our well-being and health.
In fact, the more we engage in these specific practices, the more new neural networks we create, allowing us to reset our brain. The more we practice activating states of joy and well-being, the more our brain settles on the latter as our default setting, protecting our cells and immunity, helping us to live life fully.
Likewise, fear and suffering in the face of stressful life events—including our emotions about illness—can be as damaging to the immune system as a virus or toxic chemical hit and can do similar long-term damage.
* * *
MY QUEST WAS as much professional as it was personal: I knew I was hardly alone in my hunger to rekindle a sense of joy and well-being despite the physical realities I faced. I wanted to help every woman—or man—who was wrestling with similar issues to find ways to enhance her brain’s own healing responses.
I knew that 133 million other Americans—one out of two adults—suffer from at least one chronic condition: back pain, irritable bowel and digestive disorders, arthritic conditions, migraines, thyroid disease, autoimmune diseases, depression and mood disorders, cancer, Lyme disease, fibromyalgia, chronic fatigue syndrome, and chronic pain. Experts predict that these numbers, which have been rising steadily by more than 1 percent a year, will rise 37 percent by 2030.
And most of us are women:
Women are more likely than men to suffer from migraines, and significantly more likely to suffer from lower pack pain, which is more painful in women than in men.
Ninety percent of fibromyalgia sufferers are women.
We are twice as likely to suffer from depression, which scientists now classify as an inflammatory disease: individuals facing depression have higher levels of inflammatory chemicals that impact the pathways of the brain as well as increase overall chronic disease risk.
We are more likely to suffer from irritable bowel disease and arthritis.
Women are three times more likely than men to suffer from autoimmune diseases including lupus, multiple sclerosis, type 1 diabetes, thyroiditis, rheumatoid arthritis, and inflammatory bowel disorders.
Because breast cancer affects younger women more than most cancers, women under sixty suffer from higher rates of cancer than do men (in later years men suffer from cancer at a higher rate than women).
We’re far more likely to find ourselves facing multiple chronic conditions that elicit both more emotional distress and a greater chance of disability. Fibromyalgia and diabetes. Migraines and slipped disks. Thyroid condition, irritable bowel syndrome, arthritis, and lupus. For women, diseases seem to come in pairs, or even in sets of three and four.
Recently, I sat at a conference on women’s health issues, where we discussed chronic diseases with noted physicians in a variety of fields. “Walk into any of our waiting rooms and it’s full of women in their thirties, forties, and fifties,” said the director of one clinic. “The American woman in her prime is our prime patient; she’s the walking wounded of our day.” Around the table, a dozen heads nodded yes.
The walking wounded of our day.
Despite our growing numbers, we are largely invisible. Often, the illnesses women face remain unnoticed by casual observers, even those who may think they know us fairly well. According to the Census Bureau, 96 percent of us who confront a chronic health problem live with an illness that has no surface manifestation—we don’t use a cane or any visible device; we don’t wear a cast or bandages or appear disfigured. We seem, at first glance, to be well enough.
As a result, the daily physical, emotional, and spiritual struggles chronically ill women so often face go largely unseen and uncounted. Often, women tell me they secretly feel their illness is their personal failure. They don’t talk openly to their friends or colleagues or husbands about what they’re going through, and they don’t know how to find one another. They’re so good at hiding what they’re suffering that they don’t recognize each other when they pass on the street, or chat over coffee at work, or meet over the bake sale table at school.
But they do find me. In the course of my work I’ve met and spoken with thousands of women who live with conditions that derail their lives, draining them physically, mentally, emotionally, spiritually. I understand, when I meet these women, exactly where they are—because their feelings of loss echo my own well-masked grief.
Behind our masks, we glimpse where we’ve been, where we are—and our fear of what might happen to us next.
Some women share their stories with me through my Web site; other times we talk in person. I’ll be finishing a lecture and a woman will linger and begin to tell me a little bit more about her life, her story. She might tell me that she’s a breast cancer survivor and is on tamoxifen, or she has fibromyalgia, or debilitating bowel problems, or chronic back pain or lupus, or recurring anxiety and depressive episodes, or excruciating migraines that nothing can cure.
Pain, fatigue, and fear, these women confide, are very distracting; they narrow our bandwidth until joy can’t get in. I recall one woman putting it this way: “It’s as if I’ve been standing outside a window and looking in for too long, watching others savor a fullness—a joy—in living I’m afraid I’ll never know again.”
I knew just what she meant.
We are all emotional beings living in physical bodies. All of us suffer at some point or another from the frailty of the human condition. Many women are faced with this stark reality earlier than most—in what should be the fullest years of their lives. Their hopes for a different life despite their daily symptoms, and the fear of what might come next, strike a chord, however, in all of us.
And yet one doesn’t have to have faced great physical pain to benefit from the new discoveries of psychoneuroimmunology and the science of joy. Certainly many women are not in the throes of dealing with an illness or injury—but still face moments of emotional or physical suffering that block out the sense of well-being we all hunger for. Almost all of us live with our share of physical or emotional disquiet—headaches, hot flashes, rashes, that churning gut, intermittent days of sadness and low mood, or anger and loss—and all of these can keep us from living the life we imagined. These day-to-day stressors are more than enough to make it imperative that we each take the time to understand how we can better our lives through the new science of joy and find a greater sense of contentment.
* * *
HERE IS HOW this book took shape:
Compelled by my own experience, and concerned by my conversations with so many other women, as well as the Web comments I received, I set out to spend a year investigating the question of how we can search for joy despite a recurring history of pain, loss, or illness. I wanted to better understand, too, the feedback loop between how feeling better emotionally might help us feel a sense of physical relief in the face of chronic conditions. How strong was that feedback loop? Could I set my own in motion?
Of course the further I delved into this research, the more questions I had about what I was reading: how much can what we do really affect the systems of the body—especially when the physical damage of illness has already occurred? Can activating a mindset of joy and well-being help reverse or at least stop the progression of symptoms, pain, disease? Or, at a minimum, put us in a place where contentment is possible despite the physical challenges we face?
Science rarely gives us such black-and-white answers.
What we do know is that the PIN response directly impacts our immune systems and cellular activity in profound ways.
We also know from related disciplines of research that our bodies have the potential for a surprising degree of cellular transformation. Many cells in the body renew themselves on a continual basis. Our white blood cells are renewed every few days and our red blood cells turn over every few months. We create a new stomach lining every five to seven days. Our skin is renewed each month. Even half of the muscle cells in our heart are regenerated in the course of our lifetime.
But what does this really mean for those of us who suffer from physical disease? Can we really change our cellular health once disease is already set in place? Change not only our levels of inflammatory and stress markers but our blood cell counts, our pain quotient?
Could I?
As I set out on my exploration, one entirely new factor kept emerging—quite strongly. Scientists are now showing in wide-scale studies that long-ago childhood trauma and adversity play a significant role in how well our immune system functions in adulthood, impacting our lifelong health. In the process of investigating this breakthrough research, I learned things that surprised me professionally and changed me personally forever.
As I got deeper into my project, I understandably met some resistance. “I worry that this just heaps more on women’s shoulders—making us responsible for one more thing,” one friend who has irritable bowel and chronic migraines told me. “In addition to taking care of everyone else and taking care of our illness we have to figure out ways to feel joy no matter how bad we feel—or it’s our fault if we don’t get well.”
I took her point very much to heart.
The science presented in this book is provocative—and powerful. So powerful it might be tempting for some to use this information in the wrong way, blaming those who are chronically ill for being sick in the first place—and for remaining ill if they can’t “heal themselves.”
The new science of PIN is one more tool in our healing arsenal, among many. Nowhere in this discussion is there room to imply that those of us who are chronically ill caused our own illness, or that we’re at fault if, despite all the brain-body methods we employ, physical suffering does not improve. In the end, no doubt, the benefits of setting out to change one’s own PIN response will be different for every reader. For some women, these methods may help to bring them closer to physical healing. For others, practicing these approaches may provide emotional healing, freedom from the mental suffering that so often accompanies chronic conditions, offering them a newfound state of emotional well-being that enhances their quality of life—regardless of whether their physical condition improves. Ask any one of us who faces a chronic condition, be it physical or emotional: to intervene in the mind’s orchestration of suffering—especially when anxieties flare about one’s illness—is no small gift.
In the course of this yearlong exploration, I delved into the most promising of these brain-body methods, charting my experience, and providing a science-based road map of the brain-body tools, strategies, and mental energies we can all draw upon to move from suffering and pain to contentment and joy. As I charted the landscape of the interior healing capacity of our brains and its impact on our bodies, I often felt I was detailing what cartographers refer to as “sleeping beauties”: those parts of the map, the landscape, that we haven’t, until now, known as much about as we need to in order to better determine the course of our lives.
Throughout this book I’ve tried to provide a blueprint for that unknown territory, showing which approaches and tools helped me most in my efforts to feel better both emotionally and physically, so each reader might begin her own journey. What approaches made the biggest difference when I was feeling my worst? What do we know about why they work? What makes their effects so powerful? Given the busy structure of our daily lives and the limitations those of us with chronic conditions often face, how could we pull these practices into our lives in small, but life-changing ways? Exactly how did the hard work of practicing these methods pay off in terms of feeling more joy and well-being as time went by? Did they provide any palpable relief? And, did that physical relief bring, in turn, a greater sense of joy in life? What emerges throughout the course of this book is a set of tools to choose from to help you assemble your own healing toolbox.
The most important thing is that each of us sets out to discover what strategies work to maximize our brain’s own healing response, and that we take time to practice these, even when we don’t think we’re well enough, or have time or energy enough, to try.
I want to give every reader the best possible chance to claim wholeness, leave suffering behind—and reach a new level of wellness.
In the pages you’re about to read, I hope I’ve made that welcome outcome possible for you. It may seem an unlikely thing to wake up one day feeling joyful and alive, despite so much pain, fear, and fatigue. But with determination and dedication, I know it can happen. It happened to me.