How to Live Well with Chronic Pain and Illness - Introduction
Comfort, understanding, and advice for those who are suffering—and those who care for them.
Making Peace with a Life Upside Down
But do not ask me where I am going
As I travel in this limitless world
Where every step I take is my home.
—Zen Master Dogen
You’re not supposed to fall ill on a trip to Paris. You’re supposed to fall in love—if not with that special someone, then with the city itself. Unfortunately, I fell ill. This was in May of 2001, and I’m still sick. A seemingly harmless viral infection compromised my immune system and turned into a chronic illness that keeps me mostly housebound and often bedbound. It felt as if my life had been turned upside down. I was supposed to be in the classroom; instead, I was in the bedroom. I was supposed to be active in my community; instead, I rarely left the house. I was supposed to be spending time with my newborn grandchild; instead, I rarely saw her.
Many people think it’s somehow their fault when they become chronically ill. They see it as a personal failing on their part. We live in a culture that reinforces this view by bombarding us with messages about how, if we’d just eat this food or engage in that exercise, we need never worry about our health. For many years, I thought that the skillful response to my illness was to mount a militant battle against it. All I got for my efforts was intense mental suffering—on top of the physical suffering I was already experiencing.
The pivotal moment for me came when I realized that, although I couldn’t force my body to get better, I could heal my mind. From that moment, I began the process of learning (to reference the title of my first book) “how to be sick,” by which I mean how to develop skills for living gracefully and purposefully despite the limitations imposed by chronic illness. (Please note: I’ll be using the terms chronic illness and chronically ill throughout the book; both terms include chronic pain.)
None of us can escape disappointment and sorrow in life. They come with the territory. They’re part of the human condition, largely because we don’t control a good portion of what happens to us. If there’s no escaping our measure of disappointment and sorrow, then the path to peace and well-being must lie in learning to open our hearts and minds to embrace whatever life is serving up at the moment. This is a mindfulness practice—mindfulness infused with compassion for ourselves.
Opening in this way is not easy, and I don’t always succeed. And yet when I’m able to be fully present for my experience, even if it’s unpleasant and even if it’s not what I’d hoped for, I feel at home in the world. I vividly remember the first moment when I accepted my life as it is—chronic illness included. I felt a huge burden lift. For the first time since I became sick, the conviction that I absolutely needed to recover my health in order to ever be happy again was absent.
In the space created by that absence, I began writing about chronic illness. I write for those who are struggling with their health, for those who take care of them, and for those who wish to understand what life is like for the chronically ill. In a nutshell, it can feel as if all our cherished plans have been upended, leaving us with a life that is at once confusing and chaotic. For this reason, I refer to chronic illness as “a life upside down.”
Mindfulness is the key to developing skills for living a rich and fulfilling life in the midst of this upheaval. Mindfulness doesn’t just refer to being aware of what’s going on around us and in our bodies; it includes paying attention to what’s going on in our minds. When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our new lives, but we’re much more likely to make skillful decisions and wise choices along the way.
Mindfulness is usually defined as paying attention to our present-moment experience. But mindfulness is more than simply paying attention: it’s paying attention with care. In other words, our intention matters. Are we paying attention with the intention to ease suffering in ourselves and others, or are we passive and indifferent observers of life? Without a benevolent intention, mindfulness can become a heartless practice. Are we to watch a child run into the street and—instead of yelling “Stop!”—passively note, “Child running into the street”? Of course not. This is why mindfulness means caring attention.
Caring attention paves the way for the sense of well-being that arises when we treat ourselves and others with kindness and compassion. Caring attention also paves the way for the arising of equanimity. No matter how frustrated and unhappy we feel at the moment, minds are flexible and can change. We can learn not to be lost in painful regrets about the lives we can no longer lead, nor to be overwhelmed with fear and worry about the future. We can move from being caught in relentless stress and anxiety about our health to a place of peace with our lives, however that life happens to be at the moment.
This book covers a broad range of topics related to chronic illness and to the chronic array of challenges that life has in store for all of us. Inspired by nearly twenty-five years of Buddhist study and practice, here is my recipe for peace of mind:
▶ One dose stark reality. Our lives, and the people in them, are uncertain, unpredictable, and do not always conform to our desires or our liking; acknowledging and accepting this is the first step toward making peace with our circumstances.
▶ One dose practical skills. Learning to pay caring attention to our lives through mindfulness practice, cultivating kindness and compassion for ourselves as well as others, and resting in the peace of mind that comes with equanimity are skills that every one of us can learn, no matter how discouraged or unhappy we are at the moment.
▶ One dose humor. Humor is good medicine for the heart and the mind.
May you find a place of peace even in the midst of your health struggles. May every step you take become your home.