Shambhala Sun Audio: An interview with “How To Be Sick” author
Toni Bernhard
http://www.shambhalasun.com/sunspace/?p=18289#more-18289
Why would a law professor write a Buddhist book on chronic
illness?
A guest
post by Toni Bernhard
If someone told me ten years ago that I’d be having a book
published in 2010, it wouldn’t have surprised me. I’d been a law
professor for almost 20 years. I could have written a book in one
of my areas of expertise — a hot topic, like clergy malpractice or
celebrity pre-nups.
But if I’d been told “and that book will be about chronic
illness,” I would have said, “Sorry, not my area of expertise.”
Such is the lesson of impermanence. As Joseph Goldstein likes to
say: “Anything can happen at any time.”
In 2001, my husband and I took a much-anticipated trip to Paris.
On the second day there, I got sick with what the doctors initially
diagnosed as an acute viral infection. But as the months wore on
and the symptoms persisted, I became part of the world of chronic
illness. And thus, a new area of expertise was involuntarily thrust
upon me.
Before I got sick, I was an active member of the Buddhist
community in Northern California. I had a twice-a-day sitting
practice, and my husband and I co-led a vipassana sitting group in
Davis. I also regularly attended meditation retreats.
One of those retreats was led by the late Ayya Khema. She told
us that thoughts arise but were arbitrary and not reliable. “Most
of them are just rubbish,” she said, “but we believe them anyway.”
I took her words to heart and, before getting sick, had become
quite adept at watching thoughts arise and pass without believing
them. But put me in the sick bed all day and suddenly my thoughts
seemed anything but rubbish, and I believed every one of them:
“I’ll never get out of this bedroom.” “I’ll never feel joy again.”
“I’ve ruined Tony’s ( my husband ) life.”
I was so confused that some days I was angry at myself for
having abandoned the Dharma and other days I was angry at the
Dharma for having abandoned me. But neither had happened. The
Dharma was deep in my heart. The anger, the blame, the fear, the
frustration were but ripples on the mind. I was encouraged by
Sylvia Boorstein who reminded me that this illness was just this
illness and was not a personal failing on my part. Slowly but
surely, I began to find my way back to the many practices I’d
learned as a devoted Buddhist. Soon, I was practicing the Dharma,
not just to cope, but to cultivate equanimity and joy despite this
unexpected turn my life had taken. Maybe, I thought, the Buddha is
going to teach me how to be sick!
And so,
one day I reached for my laptop (I call it my bedtop), opened a new
document and titled it “How To Be Sick.” I looked at the words on
the screen for about a minute. “Nice idea,” I thought, “a book in
which I can use the Buddha’s teaching and my own experience to help
others with a chronic illness or condition. Too bad I’m too sick to
write it.” I hit “save” and closed the document.
Then I remembered Marianne. In 1999, I was on a ten-day silent
retreat at Spirit Rock Meditation Center. To help the retreat run
smoothly, each of us had “work meditation.” As much as possible, we
maintained silence as we worked. My job was to clear the trays from
the serving tables in the dining hall after lunch and put the
leftovers in containers. My partner was a woman who was about my
age and introduced herself as Marianne. 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 Marianne. 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. Later, I ran into one of the teachers. In my
distress, I broke the silence. I asked her if she knew about
Marianne. In response, she told me something she probably shouldn’t
have (which is why I’m not using her name). She said that Marianne
was here with her son and 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.
***
Inspired by this woman I’d known for only a few days, I began
the task of writing How to Be Sick. I described traditional
Buddhist practices, such as metta and tonglen. I
then illustrated each practice with examples from my own
experience, making the book highly personal. I wrote about
Buddhist-inspired practices that I’d devised on my own to help with
the many difficulties that my husband and I were encountering –
such as coping with the relentlessness of symptoms, weathering fear
about the future, coming to terms with a life of relative
isolation, facing the misunderstanding of others, and dealing with
the health care system. Again, I used my personal experience to
show the reader how to work with these practices.
The book was created 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 affect 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 point the way
for others to live skillfully and with equanimity and joy despite
their stressful circumstances. The Buddha’s teachings have inspired
and comforted me during this illness. He has indeed taught me how
to be sick.
How to Be Sick: A
Buddhist-Inspired Guide for the Chronically Ill and their
Caregivers is to be released in September by Wisdom Publications. Toni can
be found online at HowToBeSick.com.
