One day Toni Bernhard got sick and she never got better.
The illness she contracted first reduced then eliminated her capacity to work, to travel, and eventually to do most of the things that had previously defined her life. Activity of any sort – even a brief visit with family members – depleted her so much that it would take her days to recover. Her life became confined almost entirely to her bed.
That’s how it is with chronic illness. One moment you’re going along living your life, the next moment something is wrong. At first you don’t think of it as a life-transforming occurrence. You assume that your life will return soon enough to the way it was before. But instead you continue not getting better. The cognitive awareness that the course of your life has been altered occurs over months or years, as your symptoms persist or worsen and you spend more and more money going to doctors in search of a diagnosis that will explain what’s going on, in search of a treatment that will heal you.
Sometimes a diagnosis comes, sometimes it doesn’t. Sometimes a treatment exists, other times it doesn’t. Maybe you will get better, maybe you won’t. In far too many cases, you are compelled over time to accept, first, that you may never have a good understanding of what is wrong with you, and second, that your life is now defined by your illness. You try to figure out a way to hold this deep uncertainty. You struggle to know whether to fight or to accept the new limitations on your life. You try not to let yourself hope too hard…but you also try not to let yourself abandon hope.
The central question of your life becomes: how do you hold all of this ambiguity and uncertainty and loss in mind, without going mad?
That is precisely the question that Toni Bernhard addresses in How to be Sick.
Bernhard has written this beautiful book (which in form and style resembles in many ways the work of other Buddhist authors like Pema Chodron and Thich Naht Hanh), with the wisdom and clarity that come from having faced unimaginable difficulties with a powerful intellect and a humble spirit. The result is that she is able to articulate deep truths with an elegant lucidity.
The book opens with a brief recounting of the story of how Bernhard became, and then remained ill, after contracting a chronic-fatigue type illness which remains largely undefined and untreatable. Powerful though this story is, it isn’t the primary focus of the book. Rather, it’s the backdrop against which Bernhard illustrates the Buddhist techniques and principles which she has learned to use to transform her experience of illness.
This is an eminently graceful book, at once simple and profound, which will be extremely valuable to anyone who suffers with chronic illness. But to be clear: although the techniques which Bernhard describes here are based in Buddhist teachings, you don’t in any way need to be a practicing Buddhist to make use of them. Like all Buddhist principles, they are essentially psychological in nature. In fact, they are the same sorts of techniques that I use of in my psychotherapy practice to help people cope with difficult situations that are out of their control.
If I could distill the message of the book down to a single sentence it would be this: though we must inevitably suffer through the physical ills and limitations of our bodies, we don’t need to add mental suffering on top of our physical pain. In fact, we have the power to define for ourselves what attitude we take toward our own experience. Even as our bodies suffer, we can find mental liberation.
This powerful concept extends far beyond the experience of illness. The techniques Bernhard describes here are useful for any number of ordinary situations. How do we react when we’re stuck in a traffic jam? What do we tell ourselves when we succumb to temptation and over-eat or drink too much? How do we think about ourselves when we experience anger toward someone we love?
The techniques in How to be Sick can be usefully applied to any of these situations. But they have special relevance to the experience of chronic illness.
To give just one example from the many in the book, Berhnard describes a simple practice aimed at helping us dis-identify with our illness. She relates the story of a teacher named Munindra-ji who was travelling to visit a sacred Buddhist site in India. Stuck for hours in a hot train station without food or bathrooms, his students became worried about him. But when asked if he was all right, he replied: “There is heat here, but I am not hot. There is hunger here, but I am not hungry. There is irritation here, but I am not irritated.”
The simple beauty of this statement is piercing and poignant. So much suffering arises out of our rigid identification with our physical state. We believe (usually without realizing that we are doing so) that we are our body.
Bernhard takes this simple practice and applies it to her experience of illness. She tries saying to herself: “There is sickness here, but I am not sick.”
With those words, our state of mind can start to change. From those words, a series of questions emerge.
“Who am I?” Bernhard asks herself. “What is Toni Bernhard? Is Toni Bernhard a solid physical and mental entity with an inherent self-existence or is Toni Bernhard a label attached to an ever-changing constellation of qualities?”
Asking this question opens up space in our minds to challenge the seemingly obvious bond between our physical experience and our definition of self. That this association can be challenged is a truly radical concept.
That phrase – “there is sickness here, but I am not sick” – is one that I have been saying to myself often since reading this book. Because, as readers of this blog will understand, I have been drawn to this book as the result of my own struggle with chronic illness.
For me it began several years ago with some subtle shifts in my strength and energy, which evolved into a puzzling and frightening set of symptoms which I spent two years trying unsuccessfully to get diagnosed. This past summer, just as I gave up hope of getting an answer and resigned myself to accepting that I might never know what was wrong with me, I received a diagnosis of Lyme Disease.
That diagnosis gave me some answers while simultaneously giving me a new set of ambiguities and uncertainties to struggle with. Though I undoubtedly have it, the very existence of chronic Lyme disease is hotly debated by medical professionals. This makes it difficult at times to simply relax into a definition of my condition. Further, the treatments for chronic Lyme are both controversial and inconsistently effective. To put it simply: no one really knows with certainty what treatment will work for each infected individual. And to put it personally: six months of treatment hasn’t had the slightest impact on my own health.
How do I hold this complex reality in mind? How do I think about my identity as I navigate the series of losses that this disease has imposed upon me?
As it happened, during the period that I was searching for a diagnosis I was also writing a book, The Next Ten Minutes, which contains a series of techniques for weaving mindfulness practices into the habitual routines of everyday life. Much like Toni Bernhard, I was living my life at the intersection of mindfulness and chronic illness.
It was only logical that I should try to find ways to use my own mindfulness practices to cope with my experience of illness and uncertainty. But as my readers will be aware, I am at best an inconsistent Buddhist. I believe deeply in the psychological power of Buddhist practices. I teach them to my clients all the time. I try to incorporate them regularly into my life, but more often than not I am irregular and unsystematic in my practice.
Clearly I needed something more than my own advice. I needed a better guide.
When I saw the title of Bernhard’s book I understood that she was precisely the guide I needed at this point in my life. I knew this with certainty even before I knew what was actually inside her book,
I believe that words have great power. I believe that holding certain simple phrases in mind can significantly affect our experience. In writing my own book, I hoped that the words The Next Ten Minutes would have this sort of power. The words How to be Sick absolutely work in this way. You cannot hold that phrase in mind without challenging your assumptions about illness. It’s a phrase which deftly tricks us into a self-reflective stance toward those assumptions. They are words which communicate the essential truth within Bernhard’s book: we have the freedom and power to transform the way we think about our experience.
In helping me see this, Toni Bernhard has given me a gift. I sincerely hope that you will be able to experience her gift as well.
