Preparing for shiva

How to be sick well: Toni Bernhard's guide for the chronically ill

How+To+Be+SickThis book is written for people who are ill and aren't going to get better, and also for their caregivers, people who love them and suffer along with them in wishing that things were different. It speaks most specifically about physical illness. In the largest sense, though, I feel that this book is for all of us. Sooner or later, we are all going to not "get better."

That's acclaimed Jewish-Buddhist teacher Sylvia Boorstein in her introduction to How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard.

The book was recommended to me by one of my congregants who cares for a chronically ill loved one. She described Bernhard's book as "How to be sick well" -- how to achieve emotional and spiritual wellness even when one's body remains sick.

Bernhard became ill in 2001 and has suffered from chronic illness ever since. The first two chapters tell the story of her illness. Beginning in chapter three she shares how her Buddhist learning offered her a way of approaching her illness as a spiritual practice. She wanted to know "how to live a life of equanimity and joy despite my physical and energetic limitations." This book offers her answers to that question.

Early in that third chapter she writes about the power of "just being" with what is:

Just "being" life as it is for me has meant ending my professional career years before I expected to, being house-bound and even bed-bound much of the time, feeling continually sick in the body, and not being able to socialize very often. [Drawing on Buddhist teaching,] I was able to use these facts that make up my life as a starting point. I began to bow down to these facts, to accept them, to be them. And then from there, I looked around to see what life had to offer. And I found a lot.

I struggle a little bit with her language of "bowing down to" these facts. And yet I recognize that there is wisdom in accepting what is, instead of getting caught up in wishing that things were different. I know that in my own life I get into trouble when I get attached to my expectations of how something will be, and I feel more open to blessings when I can simply be with what is.

This is a book rooted in Buddhist terminology and thinking. But Bernhard does a good job of explaining how these concepts relate to the life we all share. For instance, the "first noble truth" of the Buddha is that dukkha, usually rendered as "suffering," is an inevitable part of human life. Bernhard notes that it is balanced by the equally true reality that joy and happiness are also part of human life. Most of us prefer to focus on the joy and avoid or ignore the suffering, but both of these are part of being alive.

The Buddha taught that he could offer an end to suffering, but he didn't mean physical suffering, which is an inescapable part of the human condition. Human beings have bodies; bodies feel pain and discomfort; there is no way to entirely avoid that in this life. But the Buddha's teachings offered Bernhard a valuable path toward ending mental suffering. No matter what we are experiencing in our bodies, we can always cultivate a mental state which will lift us out of that suffering. She writes:

I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can't control what thoughts arise in the mind. (Telling yourself not to think about whether you'll feel well enough to join the family for dinner is almost a guarantee that it's exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they'll blow on through soon -- after all, that's what they do.

I offer words similar to these (about thoughts arising and passing) every week at our meditation minyan. And I like her teaching that moods are ultimately changeable, too -- though I will note that when I have wrestled with substantive anxiety or depression, moods have been more pervasive than what she describes. (Dear reader: if you are experiencing a "blue mood" which does not pass, please seek the counsel of a therapist.)

Bernhard writes about Buddhism's four "sublime states" of lovingkindness; compassion; joy in the joy of others; and equanimity, a mind that is at peace in all circumstances. (I've posted about equanimity a few times, drawing on teachings from Hasidic and Mussar traditions: Shviti and Cultivating equanimity.) "Cultivating joy in the joy of others has been central in coming to terms with the life I can no longer lead. Without this, I'd be steeped in envy," she writes. 

Lovingkindness, compassion, and equanimity are all familiar ideas to me from my own tradition. But the idea of specifically cultivating joy in the joy of others was new to me. Bernhard explains that she has made a conscious effort to feel genuinely glad for people who got to do things she couldn't do, and to consciously affirm joy in their good fortune. At first, she admits, that felt "fake" to her-- but over time the fake practice became real, and now it is second nature.

The "fake it 'til you make it" approach is something I've experienced in Jewish practice, as well. As Rabbi Jeff Roth taught me many years ago, on mornings when I can't access genuine gratitude as I pray the words of the modah ani, I can recite the words in the hope that gratitude will arise for me again. If I waited until I fully felt the meaning before I said the words, I might never pray at all. Sometimes saying the words with regularity is part of what trains my heart and soul to feel the gratitude and the awe which the words express.

I noticed, as I was reading, that some parts of the book resonated with me, and other parts of the book made me want to argue. For instance, I felt some discomfort when I encountered her teaching that suffering can arise from one's desire for certainty and predictability. I felt an immediate and visceral push-back: Hey, what's wrong with wanting predictability? I try hard to create predictability for our child in my parenting life! (Which, of course, says more about me and my attachments than about it does about her teaching.)

And yet I recognize that for someone who is chronically ill, certainty and predictability are in short supply. On a given day, Bernhard may or may not feel up to getting out of bed, or seeing people, or leaving the house. Those are no longer the kinds of things on which she can count. But she writes poignantly about how, when she can let go of the desire for certainty, she can access a different kind of freedom. She writes:

Our tendency is, of course, to want our desires to be fulfilled. But if our happiness depends on that, we've set ourselves up for a life of suffering.

Reading that, I thought of something I've been reminding our son gently as his birthday approaches and as he notices ever more toys in the world which he would like to own: it's great that there are so many things in the world to want, and it's okay that he's not going to get them all. It's a tough lesson for a five-year-old to learn, though this book helped me recognize how we are all prone to the challenges of thwarted desires. Of course we all want things. And, we all have to learn how to be okay with the fact that we don't always get what we want... whether what we want is a new toy, or healing from an illness which isn't going away.

It's better, she writes, to learn to choose a different train of thought:

As I lay in bed, the flu-like symptoms were indeed physically unpleasant. But, instead of mindlessly allowing aversion to arise as I had done thousands of times in the past, I realized I had a choice of where to put my mind. So I consciously moved my mind to lovingkindness, silently repeating "Dear sweet, innocent body, working so hard to support me." Directing this well-wishing at my own body was my doorway out of dukkha [suffering]. I got off the wheel of suffering. I was free from aversion to my illness and from all that can follow from that aversion -- for example, becoming and being reborn as a bitter and resentful person.

(When she speaks about being reborn, she isn't referring to reincarnation per se, but to the idea that we are reborn in every moment. If I cultivate anger, then I am being reborn as an angry person. If I cultivate equanimity, then I help myself to be reborn in this moment as someone who is calm and at peace. I think this relates to the idea of carving new grooves on heart and mind.)

Bernhard offers several valuable mental practices. One of my favorites is "dropping it." First, she teaches, focus on something sad in the past ("there are treatments I regret having tried, and recalling them gives rise to stressful thoughts such as 'Am I sicker today because of that potentially toxic antiviral I took for a year with no positive results'") -- and then just drop it. "Maybe you can drop it for only a microsecond, but just drop it and direct your attention to some current sensory input," she urges, and feel the relief which ensues. And make this a regular practice. "With practice, you'll find that at the command 'drop it,' the memory is gone and so is the suffering that accompanied it."

I also really like her teaching about how to respond to one's own frustrations with compassion. For instance, someone who is feeling sad and frustrated about missing a family gathering due to illness might say to themself, compassionately, "It's so hard not to be able to join the family for dinner." Like the teaching about thwarted desire, this one too makes me think of our son, because I often try to comfort him in this way: by letting him know that I hear him, and I understand what he's feeling, and I empathize with where he's at. But I hadn't thought in terms of bringing that same kind of compassionate listening to the cries of one's own heart.

Toward the end of the book, she writes:

Living well with chronic illness is a work in progress for me. Some days, I still cry out:

"I can't stand this oppressive, sickly fatigue one more day!"

"I don't care if stressful thoughts exacerbate my physical symptoms!"

"I don't want to hear that laughter coming from the living room!"

"I don't care if this is the Way Things Are: I don't want to be sick!"

When this happens I "put my head in the lap of the Buddha," as the Dalai Lama suggests, and again take refuge in one of the practices I've shared in this book.

This is a brave and necessary book, and I admire Bernhard tremendously for writing it. I hope that having read it will help me be a more compassionate and caring pastoral presence.