How to Be Sick A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

Abstract

“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.