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Learning To Live A Full Life With Chronic Illness

by Toni Bernhard
Jan 31, 2011 (Morning Edition)

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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.

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.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

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

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