Introduction
If you have picked up this book, you are most likely someone who is living with chronic illness or pain. Perhaps you are newly diagnosed and still reeling with what this may mean for you; perhaps your condition has affected you for many years and you are looking for new ways of living with what you have; or perhaps you are seeing physical improvements but find that your spirit is still not healed. Or perhaps you are in a caregiving role or are thinking of giving this book to someone you know who is facing the challenges of illness or pain.
Whatever your circumstances, you have probably found that there are many difficult emotions associated with chronic physical challenges: grief, despair, frustration, shame, and a host of others. These emotions can be as hard or harder to live with than the chronic condition itself. There are also, of course, moments of comfort, peace, hope, connection, and presence, and these are important too.
We have written this book because we both live with a chronic, painful, and sometimes disabling illness (rheumatoid arthritis, or RA) and we are both Unitarian Universalist ministers. We want to offer you what we have learned about living with chronic illness, spiritual practices that we have used and taught that can bring some ease, and words and images that inspire our spirits from day to day.
In this book you will find stories from our lives, stories from others whose life circumstances and illnesses are different from ours—many from marginalized and silenced communities—meditations, journal prompts, quotes, poetry, and music. This book is meant to be contemplatively browsed and savored. It is meant to be an encouraging, thought-provoking spiritual companion through the seasons of chronic illness, a companion we wish we had had ourselves.
We also envision this book as a study guide for small groups, which we are calling Seasons Circles. Read the chapter “Using This Book in Small Groups” in the back of the book to learn more.
The Stages and Seasons of a Chronic Condition
Some people talk about “stages” of learning to live with a chronic illness or injury. Joy Selak and Dr. Steven Overman, in the book You Don’t Look Sick! Living Well with Invisible Chronic Illness, describes these stages this way, based on the work of Patricia Fennell:
1. Crisis/Getting Sick includes the shock, anger, fear, and loss experienced when a person first gets sick or injured, or is first diagnosed with a chronic disease.
2. Stabilization/ Being Sick, where there is more acceptance of having a chronic condition, and a person begins to work with their circumstances more actively.
3. Resolution, the third phase, is a deeper part of Being Sick, where there is room for grieving the old life that have been lost or changed and accepting that the illness or injury is not short term (though that doesn’t mean you’re not still working to be as healthy as possible!)
4. And finally, Integration/Living Well, when a person finds value, meaning, and purpose in their life as it is, no matter how sick or healthy the body may be.
The reality is that if an illness or injury lasts more than a few months, this cycle will probably recur again and again, and will begin again with a new diagnosis.
As we were considering the structure of this book, we decided to use the metaphors of the four seasons: Fall (Crisis), Winter (Stabilization), Spring (Resolution), and Summer (Integration), to represent these four stages and the cycle as a whole. Within each season, there are four chapters devoted to some of the challenges you may experience there and ways to live well, wherever you are in your journey.
We hope that this book can help you move from surviving your condition to thriving in your circumstances—in every season. As Darlene Cohen, author of Turning Suffering Inside Out: A Zen Approach to Living with Physical and Emotional Pain, wrote:
The world that opened to me through engaging the physical suffering and mental anguish caused by my disease has turned out to be inexpressibly rich. Because if we can engage with our suffering—connect with it, dance with it, tease it, coax it, curse it, as well as trying to change it, just consider it our lives, experience it as our lives, the only lives we have—it changes the quality of that suffering. It’s not just our suffering; it’s everything.
This is what we hope for you.