Toni Bernhard on why a law professor like her would write a Buddhist book on how to deal with chronic illness, and how she came to terms with chronic illness herself.
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.
Nice to get a little more of the story, Toni. Thank you for sharing, and for enlightening us about the experience. You are truly an inspiration.
Thanks for your kind words, Kari. I assume this is "my" Kari from Davis 🙂
yep.. 'tis me. I notice other folks here, too (Susan Piver's someone I've followed on twitter for a couple years..). 🙂
Beautiful work Toni – I can't wait to read the whole book.
Thanks so much Emma.
Via Facebook — Pj Peggy Starr: "I am in awe & gratitude of & for this article, Toni's book, thoughts, & work. I have come to the same conclusion, How to be Sick is vital information, yet it never occurred to me that that thinking could become a book to help others. congratulations. This is truly living the Dharma:) Bows to Toni."
Kel Munroe: "I will certainly be purchasing this book. I have lived with a chronic illness for many years. And, this sounds like a wonderful book! ♥ "
Toni,
Can't wait, I'm so looking forward to getting my copy. It will be much read.
I loved the insight into the writing process, makes it so much more personal. Thankyou Toni!
Zarla
I'm so glad you liked the piece, Zarla. Thanks for reading it.
Toni
What an amazing story. I so admire your sense of determination to write a book against the odds and on a topic you never ever expected to be an 'expert' on!! I have lived with M.E. for 6 years and I really associate with what you say about the 'rubbish' thoughts taking a hold. I have become fascinated by the power of the mind whilst being ill and this is just another wonderful example of how we can 'manage' our situation, even if it is a situation we would rather not be in!
I wish you all the luck in the world with the book.
Karen
xx
It's nice to hear from someone who is similarly sick. It's a tough illness. I love Jack Kornfield's line: The mind has no shame. Yes, those rubbish thoughts will stick like glue if we let them. Thanks so much for your good wishes Karen. I hope the best for you.
My daughter became ill with ME at age 13. She is now 19 and still very ill and now struggling with depression. I'm looking forward to getting your book … 🙂
Take care.
Jayne xo
Hi Jayne. I'm so sorry to hear about your daughter. I've read that a lot of people, though not depressed before they got ME/CFS, become depressed after years of unrelenting symptoms. I hope with all my heart that my book will provide some tools and practices to help you and daughter weather this tough illness. All my best. Toni
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Donna Alvarado
Thank you, dear Toni. I believe, also, that through embracing our pain, disability, illness, that we are able to deepen our practice. It offers a different perspective of the suffering of others, strengthening our compasision and love for all beings. Peace to you, my friend.
Mary Payne
Thank you; I have had a chronic progressive illness for 19 years and I welcome Toni's book. Chronic illness is, after all, emptiness as well.
Toni,
Thank you for deciding to write this book and for seeing it through to completion, especially on those days and through the months when completing it seemed a very far off goal. I look forward to reading it! My wife has been spinal cord injured since 1985. The issues you mention are ones we relate to quite well. Perhaps your insights will give us that moment of wisdom which will make the difference on one of the more difficult days. (I have no doubt it will be so!)
Brian,
It sounds like you're in the role of caregiver, just like my husband is. Thanks for your encouraging words. I hope with all my heart that the book will be useful to you. It's full of practices so I'm sure you'll find some that resonate with you. On those difficult days you refer to, I sometimes get a draft form of it out and re-read it and it helps me. My husband and I joke about how I'm being helped by my own book! Take good care.
Hi! Toni
I look forward to your book. I am hypothyroid and I too had viral fever symptoms and after that I never recovered. I feel tired and sleep is diturbed. Its been a year. No disease diagnosed so far. So doctors naming it CFS.
Whats your diagnosis?
I do buddhist meditation though not regular.
Anurag
Hi Anurag. My diagnosis is indeed CFS although experts say that there are several different illnesses that have been put under the umbrella of that term and that until mainstream doctors and researchers accept this, little progress will be made in pinpointing a cause or an effective treatment. It remains a mystery illness. I've tried many treatments, both mainstream and alternative. None have had any lasting effect. I hope the tools and practices that I write about in the book will help you as much as they've helped me live with this unexpected turn in my life.
All the best,
Toni
Toni,
Congrats!
This is Kathy from Modesto that is trying to get you hooked up with the DRAIL people.
Have you heard anything from them yet?
Best wishes on all your endeavors!
Kathy
Hi Kathy. Now nice that you found your way to this article! No, I haven't heard from them yet. Again, thanks for your efforts. I hope they'll be in touch. Take good care. Toni
What a wonderful article. Now, I can't wait to read the book. My wife has struggled with chronic fatigue for years and it has transformed her (of course) in many difficult and wondrous ways. One of the things that occurred is she created a performance piece inspired by some of Pema Chodron's writings called 'Hopeless' – about finding joy and the art of giving up hope. I will share this article and your book with her. Your message is so important.
Hi Marc. I hope people in the Bay Area go to see your wife's performance piece. Yes, giving up hope is an art — knowing when to let things just be the way they are, knowing that to keep craving for your life to be other than it is is just going to increase your suffering. Take good care.
Approximately 40 minutes ago, I posted the following as my FB page status after talking with my doctor:
VENTING ALERT: Arrgggh! Can't seem to catch a freakin' break. I'm just about ready to say eff-it and take whatever comes. Just so friggin' tired of it all.
A friend just posted a link to this piece on her FB page. Let's just say I'll be buying this book! The timing couldn't have been more perfect!
Hi LeAnna. I've had those moments after a doctor's appointment, that's for sure. That's when I try to remember that the law of impermanence works in my favor sometimes — that the anger will pass! I'm glad you found me and my book and I hope that you're feeling a bit better already.
I am already inspired by your story, and cannot wait to read this book. I suffer from fibromyalgia and bursitis, which are completely overshadowed by my considerably younger husband's early onset Alzheimer's and its requirements.
I know that our own mind can be our worst enemy or greatest friend, and on particularly challenging days I question whether our situation is the karmic result of bad choices I made in the past. On better days, I focus on the opportunities for improvement afforded me by his illness. I am also writing a book about caregiving a young, intelligent, vital and talented man whose abilities are crumbling at a shocking rate.
Thank you for mustering the courage and generosity to write this book. I wish you and your husband the very best, and look forward to reading it.
Wow, Susan, you have your plate full. You're both struggling with chronic conditions AND having to be a caregiver. My heart goes out to you. Re: karma. I prefer to look forward rather than backward and that's what you seem to be doing in writing a book. I'm so glad you're doing it. When I'm having a tough time, I get my book out and look for some help. My husband kids me that I'm being helped by my own book. Take good care.