I include many self-compassion exercises in my books because they’re my personal go-to practices when I’m having trouble coping with being chronically ill, especially when the thought arises that maybe it’s my fault that I’m sick. That thought — or any negative self-judgment — is a signal to work on making my loyalty to myself unconditional.
One of the most effective ways to do this is to speak silently to myself, using whatever compassionate words fit the moment: “It’s hard to be in pain and not have an easy ‘fix’ available”; “I’m doing the best I can to cope with feeling sick all the time”; “My sweet body, working so hard to support me.” As I say these words, I often stroke my arm or my cheek. It never fails to ease my emotional pain.
No matter how difficult a day you’re having, may you keep your heart open for a ray of sunshine.
That ray can take many forms: the sight of a beautiful print on the wall, the sound of a child’s laughter, the sensation of warm water on your skin. I like to look at my dog for that ray of sunshine. I see her and say to myself, “She doesn’t know I’m sick.” For some reason, knowing that she thinks I’m perfectly fine makes me feel a bit better, no matter how tough a day I’m having. It also inspires me to look around to see what the world might have to offer this “perfectly fine” person. In the words of Joseph Campbell:
We must let go of the life we have planned, so as to accept the one that is waiting for us.
Some days, all that’s waiting for me is a funny movie on TV to distract me from my symptoms, but that’s okay. A good distraction can serve as that ray of sunshine — and a distraction always feels better than clinging to the life we planned but can no longer lead.
May you make peace with the possibility that you’ll be chronically ill for the rest of your life.
One day in 2013, I had a moment of truth: I realized that I might be chronically ill for the rest of my life. I’ve tried dozens of treatments; none of them has cleared up the flu-like symptoms that I live with day in and day out. When the thought arose “I might feel like this for the rest of my life,” surprisingly, instead of feeling sad and depressed, I felt liberated, as if a great burden had lifted: the burden to get better.
Without that burden, I felt free to get on with the life I have instead of fighting a constant and exhausting battle for what, in the end, I may not be able to get — my health restored. Don’t get me wrong: I’m still actively looking for new treatments, but I’m also newly open to the possibility that there might not be a treatment out there that’s going to work for me. This openness is helping me be at peace with my life as it is.
In the middle 1990s, I listened to a talk on cassette tape given by Pema Chödrön. She was discussing a slogan from a Tibetan Buddhist teaching called the Seven Points of Mind Training: “Give up all hope of fruition.” I had my own interpretation of what it might mean: “Give up striving for enlightenment” or something along those lines. But here’s how Pema Chödrön interpreted it. Very simply, she said:
Give up all hope of fruition.
Give up all hope.
Give up.
Give.
I never forgot these words even though I never quite understood them. I can see why some readers may balk at the idea “Give up all hope” and even more at the idea “Give up.” Yet during that moment in 2013, I felt as if I finally understood what Pema Chödrön was getting at: even as we continue to look for ways to improve our health, the only path to peace is to give up the painful, impulsive striving to reach that goal.
Finally, there’s that simple word “Give” at the end of her commentary. To me, it means giving myself to the life I have as opposed to tying my happiness to a goal that might not be attainable. It also means giving to others; when I do that, even though I’m chronically ill, my life has purpose.
May you look upon your life as an adventure, despite your illness and pain.
In chapter 40, I wrote about getting a puppy. I wanted to do something adventurous with my life since I’m home almost all the time. Two months after Scout arrived, she broke her right front leg in two different places. The repair required separate surgeries on successive days. Scout was in the hospital for five days and then needed extensive physical rehabilitation.
Even before the surgeries were performed, I started worrying about whether I’d be able to take care of her after she came home. Given my illness, could I adequately care for a puppy who’d have to be strictly confined for at least two months? Could I keep her from re-injuring her leg? If I were home alone, how would I get her to the vet in an emergency? Bringing a puppy into my life was suddenly feeling like a disaster.
As I lay on my bed, spinning these stressful stories, this thought popped into my mind: “I wanted to embark on an adventure to shake up my life. Scout is my adventure.” This simple thought changed my perspective about what lay ahead. I began to look upon the weeks to come as part of the adventure of having brought a puppy into my life. Instead of worrying, I began to plan for her homecoming. Where was the best place to keep her confined? What could I buy or borrow that would make the experience easier?
Not surprisingly, taking care of Scout was tough at times, especially given my own poor health. And yet the difficulties that arose weren’t the ones I’d been anticipating. All that fretting about the future served only to make an unpleasant experience worse for me.
Inspired by this experience, I decided to try treating my life as an adventure, even on days when I feel so sick that it’s clearly not the adventure I’d have signed up for. Being chronically ill has been one of the biggest challenges of my life. I hope one day to look back on it as also one of my biggest adventures. I wish the same for you.
May you not mind what happens.
This oddly worded wish comes from a story about the philosopher and spiritual teacher Jiddu Krishnamurti. In the middle of a talk he was giving in Ojai, California, he suddenly paused, leaned forward and whispered to those in attendance: “Do you want to know what my secret is? I don’t mind what happens.”
It’s a tall order to not mind what happens. Some days, I mind so much that I happened to get sick that I can’t see past the overwhelming desire to have my health restored. Yet even in the midst of this painful desire, I know that, for me, the path to peace and contentment is to not mind that chronic illness has happened in my life.
And so whenever this intense desire to be healthy takes hold, I gently acknowledge its presence, and then I imagine how I’d feel if I didn’t mind what happens. Sometimes this imagining is enough to break the spell of the desire to have my health restored. And when I can truly rest in that place of not minding what happens — even if it’s only for a moment — I feel free.
May you “make the best use of what is in your power and take the rest as it happens.”
This phrase comes from Epictetus, who was born a slave in 55 AD in what is modern-day Turkey. As a young man, he gained his freedom, moved to Rome, and began to teach philosophy. When philosophers were banished from Rome in 89 AD, he left and started his own school in northwest Greece, where he lived and taught for the rest of his life.
Despite seemingly insurmountable hardships, Epictetus lived a life of purpose, dedicated to helping others. My heartfelt wish is that all of you learn to “make the best use of what is in your power and take the rest as it happens.” The way I see it, there’s no higher purpose in life than to use what’s in our power to be kind and helpful to ourselves and others, and to be at peace with taking the rest as it happens.
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Afterword
Dear Readers,
I wrote in chapter 23 that my husband and I don’t have the questionable luxury of dealing with variety in my health issues. Now we do. As I was completing the final editing of this book, I was diagnosed with breast cancer. Since
then, I’ve been undergoing treatment and the prognosis is good. When I was first diagnosed, I was angry that this happened on top of my chronic illness. “If only I weren’t already sick, I’d be able to handle this better,” I protested.
The very opposite turned out to be true. The work I’ve done to find a measure of peace in the midst of chronic illness has been healing medicine for my heart and mind in this latest upside down turning of my life. For the first time, I’ve felt grateful that I got sick in 2001 because it prepared me for cancer with the caring attention that mindfulness asks of us, with compassion for myself and others who are living every day with uncertainty about what’s going on in our bodies, and with equanimity in the face of wishing things were otherwise.
At times, I’ve been worried and scared, and some of the medical procedures and treatments have left me feeling sick, weak, and in pain. Even so, not far beneath the mental and physical suffering, there’s a place of calm acceptance where, for the most part, I’ve felt at peace with this unexpected adventure that life had in store for me.
May we all find the place of peace within the turbulence of life.
With warmest wishes,
Toni
Acknowledgments
With appreciation and affection to the following:
Tim McNeill, Josh Bartok, Tony Lulek, Lydia Anderson, and everyone at Wisdom Publications, for their help and support. I’m grateful to Wisdom for publishing all three of my books.
Laura Cunningham of Wisdom, who worked with me on the final proofs for my first two books and then became my editor for this one. She was a joy to work with in every way. Laura can turn a mundane sentence into an elegant one, and she has the uncanny ability to edit a phrase so that it conveys the meaning I intended better than I was able to.
Lybi Ma, deputy editor, and the other editors at Psychology Today online, for their kindness in hosting my writing since April, 2011. Earlier versions of many chapters in this book initially appeared in my blog at Psychology Today.
My friends Kari Peterson and Elizabeth Zimmer, who, as they did with How to Wake Up, gave me invaluable feedback on the manuscript.
The many people, anonymous and not, who shared their stories with me and, by doing so, enriched the content of this book.
Dr. Paul Riggle, primary care doctor extraordinaire, for his continuing care and compassion.
Doctors Richard Bold, Megan Daly, and Barbara Galligan of the University of California–Davis Comprehensive Cancer Center. I could not be getting better care.
Nhi Nguyen and Greg Off, for their courage.
Dawn Daro, for her good company, year after year.
Sylvia Boorstein, for always making life sweeter.
Jazmín Ramos of Navidad, Jalisco, our unexpected housemate during her senior year at U.C. Davis, while I was not only working hard to prepare this book for publication but, out of the blue, was diagnosed with breast cancer. Her young spirit, her thoughtfulness, and her good company brightened my days at a time when I really needed it. Gracias desde lo más profundo de mi corazón, Jazmín.
Bridgett Bernhard and Brad Tyler, for being the spouses parents dream of for their children.
My granddaughters Malia and Cam, who don’t want to change a thing about me and who ask the best questions.
Richard Farrell, for always being there for me.
And, as is true with my other books, this one would not exist without the help and support of my husband Tony — the love of my life and my best friend. Tony, you are my heart’s delight.
About the Author
TONI BERNHARD is an award-winning author. She’s been interviewed on radio and for podcasts across the country and internationally. Her blog, “Turning Straw Into Gold,” is hosted by Psychology Today online. She maintains a personal relationship with her many thousands of fans on Facebook and other social media sites.
Toni fell ill on a trip to Paris in 2001 with what doctors initially diagnosed as an acute viral infection. She has not recovered. Until forced by illness to retire, she was a law professor at the University of California–Davis, serving six years as the dean of students.
She has been a practicing Buddhist since the early 1990s. She lives in Davis with her husband, Tony, and their gray lab, Scout. Toni can be found online at tonibernhard.com.
Also Available by Toni Bernhard from Wisdom Publications
HOW TO BE SICK
A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Foreword by Sylvia Boorstein
“Full of hopefulness and promise — this book is a perfect blend of inspiration and encouragement.”
— The Huffington Post
HOW TO WAKE UP
A Buddhist-Inspired Guide to Navigating Joy and Sorrow
“This is a book for everyone.”
— Alida Brill, author of Dancing at the River’s Edge
About Wisdom Publications
Wisdom Publications is the leading publisher of classic and contemporary Buddhist books and practical works on mindfulness. To learn more about us or to explore our other books, please visit our website at wisdompubs.org or contact us at the address below.
Wisdom Publications
199 Elm Street
Somerville, MA 02144 USA
We are a 501(c)(3) organization, and donations in support of our mission are tax deductible.
Wisdom Publications is affiliated with the Foundation for the Preservation of the Mahayana Tradition (FPMT).
Wisdom Publications
199 Elm Street
Somerville, MA 02144 USA
wisdompubs.org
© 2015 Toni Bernhard
All rights reserved.
No part of this book may be reproduced in any form or by any means, electronic or mechanical, including photography, recording, or by any information storage and retrieval system or technologies now known or later developed, without permission in writing from the publisher.
Library of Congress Cataloging-in-Publication Data
Bernhard, Toni.
How to live well with chronic pain and illness : a mindful guide / Toni Bernhard.
pages cm
ISBN 1-61429-248-5 (pbk. : alk. paper)
1. Chronic diseases — Social aspects. 2. Chronic diseases — Psychological aspects. 3. Chronically ill — Care. I. Title.
RA644.5.B48 2015
616’.044 — dc23
2015006367
ISBN 978-1-61429-248-7 ebook ISBN 978-1-61429-263-0
19 18 17 16
5432
Cover design by Phil Pascuzzo. Interior design by Gopa&Ted2, Inc.
How to Live Well with Chronic Pain and Illness Page 26