Authors: Toni Bernhard,Sylvia Boorstein

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BOOK: How to Be Sick

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For Tony

In sickness and in health,
to love and to cherish,
till death do us part.

Foreword

“YOU ARE GOING TO BE OKAY” Words of reassurance are the first therapy offered to people who awaken after a surgery, or are revived after an accident, or just before the disclosure of a fearful diagnosis. “You are going to be okay” often goes along with the summary of what now needs to happen to make things better. “You’ll need to stay a few more days in the hospital and then you can go home and finish recuperating there.” Or, “We’re on the way to the hospital and the doctors there are ready for you.” Or, “We’ll do chemo and then radiation and it might be a hard year but the chances are good that you’ll be your old self again afterward.” “You are going to be okay,” in these circumstances, means “Things are uncomfortable now, but you will get well. You will be better.” But it doesn’t always happen that way.

This is a book for people who will not be their old self again and for all those for whom, at least now, getting better
isn’t
possible. This is a book that most reassuringly says even to those people, “You, too, are going to be okay—even if you never recover your health!”

Toni Bernhard is the perfect person to write this book. In the middle of a vibrant, complex, gratifying family and professional life—literally from one day to the next—she took ill with a hard-to-diagnose and basically incurable, painfully fatiguing illness that waxes and wanes in its intensity, that sometimes seems to respond to a new treatment and then doesn’t after all, that doesn’t get worse but also never gets better. Nine years after the onset of her illness, she is still sick. She knows the cycle of hoping and feeling disappointed from the inside out as well as the cycles of deciding to give up hope in order to avoid the pain of disappointment and the sadness, and then the relief, of surrender.

Decades ago, a friend of mine, a man with a family and friends and flourishing career, said of his unexpected, debilitating illness, “This isn’t what I wanted—but it’s what I got.” He said it matter-of-factly, without bitterness, as if he understood that it was the only reasonable response. I knew that he was telling me something important. It is a fundamental human truth, transcending cultures and traditions, that the wisest response to situations that are beyond our control, circumstances that we cannot change, is noncontention. In this book, Toni shows how her longtime study and meditation practice in the Buddhist tradition help her accommodate her situation with gentle acceptance and compassion. The techniques that Toni presents for working with one’s mind in the distressed states it finds itself when facing an uncomfortable and unchangeable truth are basic Buddhist insights and meditation practices, but they are non-parochial. They will work for anyone.

This book is written for people who are ill and aren’t going to get better, and also for their caregivers, people who love them and suffer along with them in wishing that things were different. It speaks most specifically about physical illness. In the largest sense, though, I feel that this book is for all of us. Sooner or later, we all are all going to not “get better.” Speaking as an older person who has had the good fortune of health, I know that the core challenge in my life, and, I believe, in all of our lives, from beginning to end, is accommodating to realities that we wish were other, and doing it with grace.

Toni has given us a gift by sharing her life and her wisdom and I am grateful for it.

—Sylvia Boorstein

Preface

One, seven, three, five—
Nothing to rely on in this or any world;
Nighttime falls and the water is flooded with moonlight.
Here in the Dragon’s jaws:
Many exquisite jewels.

—SETCHO JUKEN

IN MAY OF 2001, I GOT SICK AND NEVER RECOVERED. The summer of 2008 marked my seventh year of living with chronic illness. One night that summer, at about 10:00 P.M., my husband came into our bedroom and joined me on the bed that has become my home. My husband’s parents named him Tony; my parents named me Toni. We met when we were dating each other’s roommates in college. On the morning of November 22, 1963, he knocked on my apartment door with the news that President Kennedy had been shot. Tony and I have been inseparable ever since. By this time of night, I’m in what we call “stun-gun” state—as if I’d been hit with a Taser—meaning it’s often hard for me to move my body and do anything other than stare blankly into space.

I greeted him with, “I wish I weren’t sick.”

Tony replied, “I wish you weren’t sick.”

There was a slight pause, then we both started laughing.

“Okay. That got said.”

It was a breakthrough moment for the two of us.

We’d had this exchange dozens of times since the summer of 2001, but it took seven long years for the exchange to bring us to laughter instead of to sorrow and, often, to tears. This book tells the story of how Tony and I moved from tears to laughter. Not always laughter, of course, but laughter enough.

I’ve written
How to Be Sick
to help and inspire the chronically ill and their caregivers as they meet the challenges posed by any chronic illness or condition, including:

▶ coping with symptoms that just won’t go away

▶ coming to terms with a more isolated life

▶ weathering fear about the future

▶ facing the misunderstanding of others

▶ dealing with the health care system; and

▶ for spouses, partners, or other caregivers, adapting to so many unexpected and sometimes sudden life changes.

In chapters 1 and 2, I talk about how I got sick and, to Tony’s and my own bewilderment, stayed sick. Starting in chapter 3, I describe how, drawing on the teachings of the Buddha (often called the Dharma), I learned the spiritual practice of “how to be sick,” meaning how to live a life of equanimity and joy despite my physical and energetic limitations. I offer simple practices, ranging from those that are traditionally Buddhist to others I devised after becoming chronically ill. I also include a chapter on Byron Katie’s work, which I have found particularly helpful.

You need not be a Buddhist to benefit from the practices in this book. If a suggested practice resonates with you, truly “practice” it. Work with it over and over until it enters your heart, mind, and body and becomes a natural response to the difficulties you face as the result of being chronically ill or being the caregiver of a chronically ill person.

At the end of the book, I’ve provided a quick reference guide that matches specific challenges faced by the chronically ill and their caregivers to practices described in the book.

I put this book together slowly and with great difficulty. I wrote it lying on my bed, laptop on my stomach, notes strewn about on the blanket, printer within arm’s reach. Some days I would get so involved in a chapter that I’d work too long. The result would be an exacerbation of my symptoms that would leave me unable to write at all for several days or even for weeks.

There were also periods when I was simply too sick to even think of putting a book together. Then the project would be left untouched for months on end. Being so physically sick would sometimes have such a strong effect on my mental state that, during the darkest moments, I considered tossing out all the work I’d done, despairing of ever being able to complete it.

But mental states come and go—and in the end, I pressed on, determined to finish the book in the hope it would help others. The Buddha’s teachings have inspired and comforted me during this illness. The Buddha and the schools that his teachings gave rise to offer many simple and helpful practices that guide both the healthy and the sick through life’s ups and downs.

The inspiration to write this book came from a person I knew for such a short time and in such limited circumstances that I don’t even know how to spell her name. In 1999, I was on a ten-day silent meditation retreat at Spirit Rock Meditation Center. As always on retreat, each of us had what’s called “work meditation,” meaning we are responsible for performing a task each day to help the retreat run smoothly. Some people cut vegetables, some wash dishes, others clean the bathrooms. As much as possible, we maintain silence even if we work alongside others.

My work meditation was to clear the trays from the serving tables in the dining hall after lunch and put the leftovers in containers. I shared this job with a woman who introduced herself as Marianne and was about my age. She looked a bit frail to me, but we shared the work equally, only speaking in a whisper now and then: “Is this container big enough to hold the extra salad?” In the meditation hall, I noticed that she seemed to be with a young man who might be her son. I remember thinking how nice it was that they were here together. She had a kind face and a gentle smile and I looked forward to seeing her every day after lunch.

In addition to working in the dining hall, we followed a path to a small building where the teachers ate and then we brought their serving trays back to the kitchen. On the seventh day of the retreat, to my surprise, another woman accompanied my partner. The three of us cleared the serving tables in the dining hall and then the new woman followed me outside as I began to walk down to the teachers’ dining room. She asked, “Do you know about Marianne?”

When I shook my head, she told me, “She’s very sick. She only has a couple of weeks to live.” Then, she turned around and went back into the dining hall.

I continued to the teachers’ dining room, shaken by this unexpected discovery. The room was empty, but the
San Francisco Chronicle
was on the table where the teachers ate. (I was on retreat, but the teachers weren’t and so newspapers were always scattered about on the table. I’d learned to avert my eyes.) But the
Chronicle
that day had a headline in letters too bold to ignore:

JFK JR.’S BODY FOUND

Having no idea what the backstory was, I quickly left the room in shock, my heart pounding, my mind spinning. There, on the path, was one of the teachers. In my distress, I broke the silence. She briefly told me what had happened to JFK Jr. (and also commented that they shouldn’t leave newspapers lying around). I asked her if she knew about Marianne. She told me Marianne was here with her son. Then she told me something she probably shouldn’t have (which is why I’m not using her name). She said that on the information sheet we fill out when we get to the retreat, under the question that asks if there’s anything the teachers should know about us, Marianne had written, “I have just two weeks to live but it won’t affect my practice.”

The next day Marianne’s spot and her son’s spot in the meditation hall were empty.

In memory of Marianne, I vow to do my best not to let my illness affect my practice. I also vow to let my practice continue to teach me how to be sick—and to enable me to help others who are chronically ill.

How Everything Changed