How to Be Sick: An Interview with Toni Bernhard

When Toni Berhnard bell ill in Paris on a trip in 2001, doctors told her she had an acute viral infection, but Toni never recovered. It is my great pleasure to bring to you a woman who truly walks the talk and has gives great wisdom and insight in her new book How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Her deep experience with applying mindfulness to her chronic illness has led her to writing this book for all who suffer and their caregivers. But truly, what has been written here can be applied to anybody. 

In this interview, Toni talks to us about how she learned to live with chronic illness, how developing equanimity can help, and her favorite quote. She also shares some advice for those who are suffering.  

Elisha: There are so many forms of chronic illness that come in the form of physical and emotional manifestations. How did you learn “How to be Sick?”

Toni: To a large extent, the Buddha taught me “how to be sick.” He’s often called the great psychologist because he had such a keen understanding of how the mind works. Everyone’s life has its unique mixture of joy and suffering. The Buddha focused on suffering because it’s a truth about life that we tend to turn away from. For me, it has included this illness. For others it could be difficulties at work, tension in a relationship, even not being able to find your car keys!

We can’t always fix our physical suffering – the Buddha experienced great bodily pain at times – but he said that we can relieve our mental suffering. Mental suffering includes both painful emotions (worry, anger, resentment) and stressful thoughts (thoughts that, when left unquestioned, can lead us spin elaborate stories about our life and our future that have little basis in fact).

The book contains many practices that help loosen the grip of painful emotions. We can bring them into awareness (sometimes called mindfulness). This allows us to see them for what they are – impermanent for one thing (thank goodness!). We can also loosen their grip by learning to cultivate calm and gentle mind states such as kindness, compassion (for ourselves first), and equanimity. (And, since emotions manifest in the body, this can even lessen our physical symptoms.)

The book also contains practices to help us question whether our stressful thoughts – the stories we spin about our lives – have any basis in reality. There’s a chapter in the book devoted to Byron Katie’s remarkable technique for questioning the validity of our thoughts. Some Zen practices are helpful here too . “Am I Sure?” I’m always asking myself (thanks to Thich Naht Hanh). Am I sure the doctor I saw doesn’t care about me? Maybe she’s terribly overbooked today. Am I sure my friend has lost interest in me? Maybe she has family problems of her own. Being sick or otherwise disabled is hard enough without adding mental suffering to it. Learning to work with painful emotions and stressful thoughts is the principal way I’ve learned “how to be sick.”

Elisha: In your book you say that “Dwelling in equanimity, we are able to face life’s difficulties with a mind that is at peace.” This is easier said than done. Tell us a bit how you’ve worked through this.

Toni:  In Buddhism, equanimity is one of four sublime emotional states. The dictionary defines it as “mental calmness and evenness of temper, especially in a difficult situation.” Some Buddhist teachers even equate equanimity with enlightenment. No wonder it’s easier said than done! Here are some of the ways I cultivate equanimity.

First, the Buddha’s teachings on impermanence (anicca) help me maintain “mental calmness and evenness of temper” when the going gets rough. If my symptoms are in a bad flare, I take up what I call “weather practice,” recognizing that my physical symptoms and my mental suffering are as changeable and unpredictable as the weather; they blow in and blow out like the wind. Just knowing this is a big relief, partly because it helps me not to follow that tendency to identify with a particular physical symptom or negative emotion as all that I am. When I see that I am not just pain, I am not just sick, I am not just frustration, I am not just sadness, it helps me calmly wait for things to change.

Second, I fall back on the Buddha’s teachings on suffering. By suffering, he was referring to dissatisfaction with the circumstances of our life. We’re familiar with this dissatisfaction whether we’re sick or not. It’s our constant longing for things to be other than they are. I like to consciously drop, just for a moment, the desire for my life to be other than it is. When I do this, I instantly feel a great sense of relief. I’m at peace. These “wants/don’t wants” (a phrase I use to refer to desire) may almost immediately pop back into my mind, but that taste of peacefulness lingers and inspires me to keep working to attain calm acceptance of my life just as it is.

Third, I’m content to take baby steps in the direction of equanimity. In the book, I draw inspiration from those who have tread this path before me – from Thai forest monks to a Christian theologian to the actress Susan Saint James who talked in a television interview about finding peace with having lost her teenaged son in an airplane crash. There’s a quotation on equanimity from the Thai forest monk, Ajahn Chah, that I’d committed to memory before I got sick:

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. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.

Little did I know that these words would become essential to me as I face the difficulties of chronic illness. If I can’t “let go” a lot, I let go a little. I can almost always nudge my mind a bit toward letting go of the desire for my life to be other than it is. Each baby step makes it a bit easier to take the next one. My personal definition of enlightenment is to not be dissatisfied in any way with the circumstances of my life. I’m certain that if this were the case, my “struggles with the world will have come to an end.” (I assume it’s obvious that, on this score, I’m a work in progress!)

Elisha: You have many good quotes at the beginning of each chapter. What is your favorite quote in there and let us in on what meaning it has for you?

Toni:

One, seven, three, five –

Nothing to rely on in this or any world;

Nighttime falls and the water is flooded with moonlight.

Here in the Dragon’s jaws:

Many exquisite jewels.

—Setcho Juken

I don’t remember where or when I found it this 1000 year-old poem but sometime in the middle 1990s, I copied it by hand onto a slip of paper and stuck it on the wall in front of my desk at work. At that time, it served as a gratitude reminder. Even in the dark of night, the moonlight lit my way, giving me much to be thankful for. Even when I was having a tough time, my life was full of exquisite jewels if I just took the time to look. Moonlight and jewels.

Then, in 2001, I got sick. For six months, I didn’t see my little poem. But, unwilling to accept that I wasn’t regaining my health, I returned to work on a part-time basis. There on the wall were Setcho Juken’s words again. However, now all I could see was the nighttime falling and the Dragon’s jaws clenched tightly around my body and my mind. When illness forced me to trade my office for my bedroom, I stuffed the little slip of paper into a drawer by my bed where it stayed for six years.

When I thought about writing a book, the title, How to Be Sick, came first. But when I began to write the text, my Setcho Juken poem was the first thing I put on the page. The moonlight was starting to light my way again. I was once again noticing the sparkling jewels in my life: the birds and trees outside my bedroom window; a newfound love for classical music; heightened compassion for those with chronic illnesses and conditions; and overwhelming gratitude for my husband who suddenly and without warning had become the most conscientious and loving of caregivers.

My guess is that my journey with this poem is not at an end yet!

Elisha: If you were sitting across the table from someone suffering with a chronic condition right now, what advice would you give them?

First, I’d say: Try as best you can to find a doctor who sees your relationship as a partnership, meaning a doctor who listens to you; is willing to do research and consult with others if necessary; and is flexible about treatment options (that is, he or she doesn’t take the position, “This and only this is what you must do”).

Second, I’d say: Remember that suffering from a chronic illness or condition is not a personal failing on your part. Despite the barrage of advertising claims to the contrary, everyone is going to face health problems at some point in his or her life. This is just the way it’s happened to you. With the right tools, you can learn to live gracefully and purposefully with this unexpected change in your circumstances.

Thank you so much Toni for the wisdom you share.

To the readers: Please share your thoughts, stories and questions below. Your interaction creates a living wisdom for us all to benefit from.

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Reposted from Elisha Goldstein’s Mindfulness Blog on Psychcentral.com

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