Toni Bernhard was a professor at the University of California – Davis School of Law when she traveled to Paris with her husband and caught what seemed to be a bad case of the flu. She never recovered.
Since 2001, she's lived with severe illness. She describes it as a persistent dazed sick feeling, combined with a low-grade headache and "a heart pounding with the kind of weird oppressive fatigue that makes it hard to concentrate or even sleep." Most of the time she is housebound, often bedbound. Over the years she has been diagnosed with chronic fatigue and immune dysfunction syndrome, myalgic encephalomyelitis, postviral syndrome, and viral-induced central nervous system dysfunction.
Bernhard's professional career was an important part of her life. For 6 years, she served as the dean of students; when she became ill, she continued to work part time for 2½ years. "It's easy to look back and see what a mistake it was to continue working while sick," she writes. "But then there's the utter disbelief that this is happening to you ... each morning you expect to wake up not feeling sick."
When she became ill, Bernhard had been a Buddhist practitioner for 10 years, doing formal sitting practice twice a day. As she adapted to a life shaped by chronic illness, she found that basic Buddhist teachings had a new depth, and helped her navigate the challenges that she faced. Her book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, describes these methods in brief, clear, essential ways.
"It took me almost six years to find my way back to a life of fulfillment and joy," she says. "The journey started when I looked more deeply at the Buddha's first noble truth: everyone's life has its share of both joy and suffering. Resisting the plain fact of my illness only added mental suffering to the physical suffering."
Anyone who is chronically ill has experienced comments from others that "even if well-intentioned, are so off the mark that we feel misunderstood and often disregarded," Bernhard writes. She lists a sampling:
"But you don't look sick."
"Just drink coffee."
"I'm tired all the time, too."
"If you were really that sick you'd be in the hospital."
In this context, she goes on to discuss Buddhist advice on maintaining equanimity. "With a mind that is calm and even-tempered, the insensitive comments of others are just not received." A few pages later she quotes: "If you let go a little, you will have a little peace. If you let go a lot you will have a lot of peace." She adds, "I love this teaching because it allows me to take baby steps in the direction of equanimity. ... First I have to recognize the suffering that arises from my desire for certainty and predictability."
None of this is easy. Reading page by page, it's clear that Bernhard has developed these methods slowly, each a tool to deal with specific challenges. What to do when illness keeps you awake at night? "In the past, I would have lain in bed getting increasingly frustrated and angry at my body," she writes. Instead she invoked loving-kindness toward her own body, "trying so hard to sleep." She invoked equanimity, "This is how things are right now." On the third night the flare-up subsided, and she slept.
We each have our own ways of coping with illness, so some people may find that this book speaks to their condition; others may not. Bernhard describes many different methods: skip around and see what catches your eye. Consider it a cookbook. Which recipe might you want to try? She writes about weather practice, broken glass practice, sky-gazing practice, patient endurance, using compassion to alleviate your suffering, finding joy in the life you can no longer lead. What a list! This is a book wherein just a page or two can suggest new ways of looking at the world.
Two More Books and a Blog
How to be Sick started out as a personal manual that Bernhard wrote for herself. When she posted sections on the Internet, readers told her that it should be a book. Now it has been translated into four languages. There's a contact form on her website, and she's getting e-mails from people all over the world, many of them describing how the exercises in How to Be Sick helped them cope with severe illness in more effective ways.
Many of her readers ask questions about Buddhist approaches to other challenges. "Life is tough," Bernhard said. "I started getting letters from people about relationship and troubles on the job and all sorts of issues. Since I've been a Buddhist practitioner for 20 years I decided to write a book putting forth my own understanding about the practical Buddhist path to awakening.
"This book, How to Wake Up, includes information on mindfulness as a way of connecting with the life you have, rather than the life you wish you had."
Bernhard also posts regularly on a blog called "Turning Straw Into Gold: Life through a Buddhist Lens." Recent topics include:
- Anything Can Happen at Any Time
- What It's Like to Take a Vacation While Chronically Ill
- Three Things the Chronically Ill Wish Their Loved Ones Knew
- How Distorted Thinking Increases Stress and Anxiety
- Resolving Conflicts When a Partner Is Chronically Ill
Now she is working on a third book (she predicts that it will be her last.) Tentatively titled A Mindful Path through Chronic Pain and Illness, it collects and adds to the essays originally posted on the blog. This book will focus on specific topics, such as the special challenges that young people face when they become ill.
A Healthy Person Thinks About Chronic Illness
I read How to be Sick as a basically healthy person, learning about a foreign country. I don't personally have the experience of severe, debilitating long-term illness, although I recognize (like all of us) that I might enter that country at any time.
For me, two of the most useful chapters came toward the end of the book: "Communicating with Care," and "The Struggle to Find Community in Isolation." Bernhard notes that housebound people are often isolated from one-on-one social contacts, from nature, and from participation in friendly crowds. "The subject of friendships can be a painful one for the chronically ill," she writes. "The sudden lack of day-to-day socializing was the hardest adjustment I had to make, even harder than losing my career."
She lists the reasons why friends gradually dropped out of her life. So often she couldn't keep a scheduled commitment, or could only visit for 20 minutes. "Some people no longer know what to talk about around us, believing that sharing stories about their activities will make us feel bad," she writes, expressing great appreciation for the few people who have maintained personal face-to-face visits with her.
Reading these chapters, I asked myself how I could relate more appropriately to people I know who are coping with chronic illness. It is useful to realize that even a little social time together can be valuable and mutually rewarding.
Over time, Bernhard's interactions with family and close friends have changed. During the first few years of her illness, she shared news about each treatment in great detail. "When I looked more deeply I saw that my relationships would be richer and more enjoyable for all of us if I didn't always talk about my illness," she writes. "Now I'm much more likely to ask about their lives."
I asked Bernhard what she wanted to say to Townsend Letter readers. "We're in bodies, and bodies get sick," she responded. "They get injured; they get older. This is just how it is, and it happens to everyone. For people who are struggling with their health, the most important thing is to realize it's not our fault. Have compassion for yourself, and for your hard-working body that's doing its best to keep you going. Even when your body is in pain, it's working hard for you."
"It would be easy enough to say, why do I deserve what's happening to me?" she added. "To me there's an element of self-blame there. It stops you from being compassionate to yourself; it stops you from living in the moment. The way I find peace of mind is to say, OK; this is the day I've got, today, just as it is. I'm hurting here. I'm uncomfortable here, but right now I'm looking outside my window and there is a beautiful scrub jay in my backyard – just beautiful."
Book: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Book: How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow
Elaine Zablocki has been a freelance health-care journalist for more than 20 years. She was the editor of Alternative Medicine Business News and CHRF News Files. She writes regularly for many health-care publications.