Learning To Live A Full Life With Chronic Illness

Author Toni Bernhard, who is house-bound and often bed-bound, says she's learned to cultivate joy through others. i i

Author Toni Bernhard, who is house-bound and often bed-bound, says she's learned to cultivate joy through others. Courtesy of Wisdom Publications hide caption

itoggle caption Courtesy of Wisdom Publications
Author Toni Bernhard, who is house-bound and often bed-bound, says she's learned to cultivate joy through others.

Author Toni Bernhard, who is house-bound and often bed-bound, says she's learned to cultivate joy through others.

Courtesy of Wisdom Publications

In 2001, I had the next couple of decades of my life mapped out. I'd be teaching law, visiting my children, and attending Buddhist meditation retreats.

Suddenly, everything changed. I got sick with flu-like symptoms. A doctor said it appeared to be an acute viral infection.

I have yet to recover. The infection has left me mostly house-bound and often bed-bound.

For the first few years of being sick, I lived in what I can only describe as a state of shock. I couldn't believe I wasn't getting better. When I didn't recover, I blamed myself. I fell into alternating states of anger, denial and despair.

It took me almost six years to find my way back to a life of fulfillment and joy. 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.

Toni Bernhard's Book

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
By Toni Bernhard
Paperback, 216 pages
Wisdom Publications
List price: $15.95
Read An Excerpt

And so I got out my well-worn Buddhist books. And I remembered something a teacher had said: "If your compassion doesn't include yourself, it is incomplete." This was a turning point for me. I began to direct compassion towards myself. Slowly but surely, I stopped blaming myself for getting sick.

I also took up a Buddhist practice called mudita: cultivating joy in the joy of others. I hoped it would be an antidote to the painful envy that overcame me when I heard of other people going to family gatherings, or even a movie. I didn't always succeed. I'd hear of people going to the Mendocino Coast — one of my favorite places — and I'd say, "It's so nice that they'll see the ocean." But I'd be saying it through gritted teeth. I kept working at it, though, and gradually the feeling of joy in other's joy became genuine. Now when my husband visits our children and grandchildren, I feel as if he's there for both of us. And so I, too, am filled with joy.

One of the toughest challenges was accepting isolation. At first, my loneliness was palpable. But over time, I came to recognize that the word "isolation" is neutral. It's just the fact of being alone. I learned to open my heart and mind to being by myself. Now I love watching the seasons unfold right outside my bedroom window. I even appreciate that no one is making demands on my time!

I've had to be inventive. Instead of traveling to see my children, I stay close to them by instant messaging and texting. I wasn't at my son-in-law's graduation. But I got a text message from my daughter: "He's crossing the stage right now!"

I've traded the role of teacher for that of student by studying classical music and opera. I particularly love Beethoven's piano trios. The Archduke is my favorite, partly because it was the last piece he performed as a concert pianist after he became deaf.

It has taken several years — and many tears — to learn how to thrive in my new life. I still have rough days when I wish I could do whatever I want. But really, who can do that anyway?

On the whole, I'm content and at peace with what I can do. Even if it's from the bed.

Excerpt: How to Be Sick

How To Be Sick
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
By Toni Bernhard
Paperback, 216 pages
Wisdom Publications
List price: $15.95

Chapter 11

Tonglen: Spinning Straw Into Gold

O that my monk's robe

Were wide enough

To gather up all

The suffering people

In this floating world.

—Ryokan

Tonglen is a compassion practice from the Tibetan Buddhist tradition. Nonetheless, I find that Ryokan's Zen poem above captures for me the essence of tonglen. Of course, they are both inspired by the example of the Buddha.

When I first got sick, it didn't take long for me to accumulate a collection of healing CDs from a variety of spiritual traditions. They had one thing in common: I was instructed to breathe in peaceful and healing thoughts and images, and to breathe out my mental and physical suffering. In tonglen practice, however, the instruction is to do just the opposite. We breathe in the suffering of the world and breathe out whatever kindness, serenity, and compassion we have to give. It's a counter-intuitive practice, which is why the Buddhist nun and teacher Pema Chodron says that tonglen reverses ego's logic.

Tonglen practice was brought to Tibet from India in the eleventh century as part of a group of teachings known as the "seven points of mind training," a collection of 59 "slogans" for practicing the path of compassion. The practice of tonglen is described in the slogan: Train in taking and sending alternately; put them on the breath.

Those two sentences don't give us a lot of guidance, but for hundreds of years, this slogan along with the other 58, have been a favorite subject for commentary by Tibetan masters. Recent commentaries can be found in the writings of Chogyam Trungpa, Dilgo Khyentse, and Pema Chodron, among others. These commentaries flesh out the meaning of each slogan. And so, tonglen becomes: Breathe in the suffering of others; breathe out kindness, serenity, and compassion. We are, in effect, breathing out the sublime states of mind introduced above.

I had learned tonglen practice before getting sick, but I didn't use it very often. Now it's my principal compassion practice. My bond with tonglen occured on the first day I returned to work, six months after getting sick in Paris.

Like everyone else around me, I couldn't believe I wasn't well enough to continue with my profession, at least on a part-time basis. So, a half-hour before my scheduled class, Tony dropped me off at the front door of the law school. It was the second week of January 2002. I took the elevator up one floor to my office. I was to teach Marital Property to second- and third-year students. As soon as I sat down in my office chair, I knew I was too sick to be there. I began to panic, so I lay down on a couch in the office. Unexpectedly, my thoughts turned to the millions of people who must go to work everyday even though they're sick. I realized that many of these people were in a worse position than I was—if they didn't go to work, they wouldn't be able to pay the rent or buy food for their families.

I'd been in the work force for dozens of years but had never before thought about people being forced to work while sick. As I was contemplating this, I began to breathe in their suffering (which, as a sick person myself, now included my own suffering). Then I breathed out what kindness, serenity, and compassion I had to give. To my surprise, the panic subsided and was replaced with a feeling of deep connection to all these people. Even more astonishing was the realization that, as sick as I was at that moment and as preoccupied as I was about the task awaiting me in less than ten minutes, there was still some kindness, serenity, and compassion inside me to send to others on the out-breath.

A few minutes later, I arose from the couch, took a chair with me, and for the first time in twenty years, taught a class while sitting down. For the next two and a half years of part-time teaching, I used tonglen in my office, followed by adrenaline in the classroom to get me through the work week. Only Tony saw the devastating effect that continuing to work had on me as I went straight from the car to the bed and stayed there until the next class I had to teach. When I think of those years, tonglen and that couch in my office are inseparable in my mind. I don't know how I would have survived without both.

After that first day back at work, I began to use tonglen all the time. I'd use it while waiting for the results of medical tests. It took me out of my small world—out of exclusive focus on my illness—and connected me with all the people caught up in the medical system who were anxiously waiting to hear the results of tests. It never failed to amaze me that no matter how worried I was, there was always some serenity, some good wishes, some compassion inside me to send out to others in the same situation. Finding our own storehouse of compassion is the wonder of tonglen practice. Gradually, the fear over my test results would diminish, and I could wait with equanimity to see what the world had in store for me next.

I love that tonglen is a two-for-one compassion practice. The formal instruction is to breathe in the suffering of others and breathe out kindness, serenity, and compassion. But the effect of repeated practice is that we connect with our own suffering, anguish, stress, discomfort. So, as we breathe in the suffering of others concerning a struggle we share with them, we are breathing in our own suffering over that struggle as well. As we breathe out whatever measure of kindness, serenity, and compassion we have to give, we are offering those sublime states to ourselves too. All beings are included.

Yet there came a day when I reached my limit with tonglen. I tried the practice on Thanksgiving Day, two and a half years after I got sick, while lying in my bedroom and listening to the sound of my family chatting and laughing in the front of the house. I tried breathing in the sadness and sorrow of all the people who were in the same house as their family on Thanksgiving, but were too sick to join in the festivities. It was too much. I just couldn't hold everyone's suffering without crying. So I cried.

But four years later, in a similar circumstance, the practice worked. It was a measure of how tonglen had slowly worked its magic. My second grandchild, Camden Bodhi, was born in September 2007. I hosted a welcoming party for her that, as it turned out, I could not attend. When I set the plan in motion in the spring, I was halfway through a year-long experimental antiviral treatment that appeared to be working. But six months later, on the day of the party, I was too sick to take the hour-long trip to Berkeley. I lay in bed that day, thinking about friends and family who had gathered to celebrate my granddaughter's birth and I was overcome with sorrow.

First, I tried mudita practice—cultivating joy in the joy of those who were at the celebration. It helped, but I continued to feel sad and disheartened by my inability to attend, by thoughts about the good time I was missing, by the feeling that I had let others down. So, I turned to tonglen. I breathed in the suffering of all those who were unable to be with their families on a special day of celebration. As I did this, I was aware I was breathing in my own sadness and sorrow, but, unlike that Thanksgiving Day, I was able to hold the suffering—to care for it—without feeling overcome by it. I then breathed out kindness, serenity, and compassion for them and for myself. The connection I felt with all those people was powerful and moving.

If you feel hesitant to try tonglen for fear that breathing in other people's suffering could overwhelm you, you're not alone. Here's the response given by the eco-philosopher and Buddhist scholar, Joanna Macy, when that very concern was raised at a Spirit Rock workshop. First, she reassured the woman asking the question that her capacity to hold others' suffering was greater than she imagined. Then she said:

If you really could alleviate all the suffering in the world by breathing it in, wouldn't you?

Of course, this is a hypothetical and so not a realistic assessment of the effect of practicing tonglen. Indeed at times we may cry in response to breathing in the suffering in the world, but it's compassionate crying—a perfectly appropriate response. And those moments when we can hold the suffering of the world on the in-breath and breathe out whatever kindness, serenity, and compassion we have to give, are like turning straw into gold.

From How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Copyright 2010 by Toni Bernhard. Excerpted with permission from Wisdom Publications.

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A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

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