How to Be Sick (6 page)

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Authors: Toni Bernhard,Sylvia Boorstein

BOOK: How to Be Sick
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I found this inspiring and very useful. When life’s uncertainty and unpredictability throw me for a loop, I like to say to Tony: “Here it is again, life and the weather. Just wind, man, blowing all over the place.” Then returning to the verse from Dogen, I remind myself that the wind that’s blowing the bitterest cold at me may be setting the stage for something joyful to follow.
 
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.
 
One night, I felt so sick I wanted to throw out all the work I’d done on this book. Dark thoughts. A blue mood. My eyes welled up with tears. But instead of those tears turning into sobs, I took a deep breath and began the weather practice, remembering that thoughts and moods blow all over the place and that if I just waited, these particular ones would blow on through. And they did.
 
When it became clear that the Parisian Flu had settled into a chronic illness, Tony and I began to consider if it was feasible for him to go on a retreat for an entire month during which he’d be out of contact with me unless I called with an emergency. I badly wanted him to go because I saw it as a way I could feel like a caregiver for him. He went for the first time in 2005 and each February thereafter. The retreat became a major annual event for him. The preparations he made ahead of time were like those that people make who are in the path of a coming hurricane. He brought a month of supplies into the house. He filled the freezer with food he’d cooked ahead of time. He set up people in town for me to contact if I needed help. My promise to him was to be extra careful in everything I did and to call him home if I needed him.
 
The forecast inside our house for February 2009 called for calm weather despite my illness. But at 9:00 A.M., two days after Tony left, things changed in a split second. One moment I was at the top of the two steps that lead down to our bedroom—the next moment I was writhing in pain on the bedroom floor, having slipped down the steps and landed on my right ankle.
 
When the pain began to subside, I pulled myself up on the bed and went straight to my laptop to research the only question on my mind: Was I going to have to go to the doctor? Medical appointments can be an ordeal for the chronically ill—the roundtrip drive, the possibility of a long wait, the energy it takes to effectively communicate with the doctor. It’s so much easier to have a caregiver along. When I go to the doctor, Tony drives me, stands in line to check in for me, and accompanies me to the examining room. I never schedule medical appointments during February.
 
Despite the rapidly increasing swelling and discoloration on my ankle, my Internet research convinced me that I only needed to go to the doctor if I still couldn’t put weight on it in twenty-four hours. So I waited. And when I needed to go somewhere off the bed, I crawled. Our dog, Rusty, was delighted to see this. He acted like I’d finally seen the light and was joining his species. This appeared to be a cause for great celebration on his part, so my challenge became to make sure that in his exuberance he didn’t step on my right foot.
 
That first day, as I lay in pain on the bed, I thought of the meteorologist’s comment to Dave the weather reader: “Dave, it’s random. We do our best.” Tony and I had indeed done our best to prepare for a calm February, but as we all discover again and again anything can happen at any time. We can take precautions, but predicting the future is as futile as predicting which way the wind will blow.
 
The next morning, when I still couldn’t put weight on my right foot, our friend Richard took me to the doctor. Diagnosis: fractured fibula. The forecast: No weight bearing on it for several weeks; a cast so heavy that it took all my energy to move my leg; crutches and crawling to get around. I toughed it out for one more day. Even with people offering to help, the injury on top of the illness proved to be too much. One or the other I could have handled alone, but not both. I knew I needed to call Tony home when, before going to sleep for the night, it took me ten minutes to make the roundtrip to a bathroom that’s only footsteps from the bed. As I lay back on the bed in exhaustion, I realized that the light over the bathroom sink was still on—a light that shines right in my eyes. I had no choice but to start the process of getting to the bathroom all over again.
 
So Tony came home four days into his treasured month-long retreat and, for a month, traded his caregiver role for that of nurse-maid. Life and the weather—one moment it’s calm and the next moment a nasty storm has blown in.
 
 
Weather practice is a powerful reminder of the fleeting nature of experience, how each moment arises and passes as quickly as a weather pattern. A week after I fell, I went to see an orthopedic surgeon. My regular doctor arranged the consult in case I needed surgery to insert a plate and pins. A resident came in the examining room first. Looking at the x-rays, he said that, given the nature of the break and the damage to the ligaments, I might very well need surgery to stabilize the area. He left the room to report his findings to the orthopedic surgeon—and dark storm clouds gathered as Tony and I contemplated the effect on my illness if I had to go through surgery. Expecting heavy rain to accompany the surgeon into the room, he walked in and immediately said, “Surgery? No, no, no! The area is stable. You just need to stay off the ankle as long as it hurts and get physical therapy to regain your range of motion.” In a flash, the sun had burst through the clouds. Tony and I were elated.
 
But a half-hour later, as I lay on the bed trying to nap, a cold dense fog settled in as I thought, “What does it matter that the surgeon gave us such good news. Even when I can walk normally again, I’ll still be sick and bed-bound most of the day and Tony, despite all this extra care he’s giving me, still won’t have my company out there in the world.” In a little over an hour, I’d experienced dark storm clouds, the threat of rain, the sun bursting through instead, and now a cold dense fog. Recognizing the fleeting nature of each moment, I was able to smile and the final verse of the
Diamond Sutra
came to mind:
Thus shall you think of all this fleeting world:
A star at dawn, a bubble in a stream;
A flash of lightning in a summer cloud,
A flickering lamp, a phantom, and a dream.
 
 
 
I knew it wouldn’t be long before the sun would burn off that cold dense fog and I’d smell the fragrance of Dogen’s plum blossoms.
 
Broken-Glass Practice
 
Finally, to help me live gracefully with the truth of uncertainty and unpredictability, I follow what I call “broken-glass practice.” This practice was inspired by a passage in
Food for the Heart
, a collection of the teachings of the Thai Buddhist monk Ajahn Chah. He trained many Westerners at his remote forest monastery and has had a strong influence on the shape that Buddhism of south Asia has taken in the West. As we shall see in more detail later, he offers powerful teachings on equanimity, which is often described as the ability to weather life’s ups and downs with a calm and even-tempered mind.
 
Here is Ajahn Chah talking about a glass:
You say, “Don’t break my glass!” Can you prevent something that’s breakable from breaking? It will break sooner or later. If you don’t break it, someone else will. If someone else doesn’t break it, one of the chickens will! . . . Penetrating the truth of these things, [we see] that this glass is already broken. . . . He saw the broken glass within the unbroken one. Whenever you use this glass, you should reflect that it’s already broken. Whenever its time is up, it will break. Use the glass, look after it, until the day when it slips out of your hand and shatters. No problem. Why not? Because you saw its brokenness before it broke!
 
 
 
I use broken-glass practice all the time. The Buddha taught that all that arises is subject to change, decay, and dissolution. So when Tony or I break something, or the power goes off, or the phone line goes dead because the neighborhood squirrels have been chewing on the wires again, we try to laugh and say, “Ah, it was already broken.”
 
As a metaphor, broken-glass practice has helped me accept one of the consequences of being sick that my online wanderings tell me would show up on the “top ten most difficult adjustments” list of anyone who is chronically ill: The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes.
 
These activities include everything from holiday dinners to special events, such as weddings. Having to sit upright for extended periods, trying to focus on a conversation while the room is full of noise, not feeling we can leave (or not having the means to leave) even though our bodies are crying out for us to lie down, are but a few of the features of these activities that exacerbate the symptoms of the chronically ill. Even people who are in good health find these gatherings to be exhausting and may need a day or two to recover, so it’s not surprising that they can have such a devastating effect on those who are already sick.
 
At the end of this book is a guide that lists several practices that can help us adjust to this most difficult aspect of impermanence—this unexpected change to our lives that suddenly keeps us from participating in activities that we had counted among our greatest joys. Broken-glass practice can be particularly helpful here. I find comfort in contemplating that my ability to participate in these activities was already broken, in the sense that this change in my life will befall everyone at some point and quite possibly by surprise. This is simply how and when it happened to me.
 
Then I reflect on impermanence—the fact that every aspect of my life is uncertain, unpredictable, and in constant flux. Finally, like Ajahn Chah, I look after each moment, cherishing what I still
can
do, aware that everything could change in an instant.
 
5
 
Who Is Sick?
 
What I am, as system theorists have helped me see, is a “flow-through.” I am a flow-through of matter, energy, and information.
—JOANNA MACY
 
 
 
BEFORE GETTING SICK, I had the good fortune of attending several retreats at Spirit Rock co-led by the Theravadan teacher Kamala Masters. At a retreat in 2000, she told us a story about her root teacher, Munindra-ji, who lived in India.
 
Munindra-ji had always wanted to see the Buddhist sacred sites. He was getting quite old, so Kamala traveled to India with some friends to take him to some of the sites. One day, they were waiting in a train station. The train was five hours late. It was blazing hot. They had no food. There were no restrooms. The track where they were to catch the train kept changing, so they had to keep getting up and moving. Munindra-ji would sit down in each new location and rest his head on his arm. He looked so frail that Kamala began to worry about how he was holding up, especially since she and her friends were barely coping with the conditions. She finally asked him 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.”
 
I recalled Kamala’s story one day as I lay in bed after becoming sick, so I silently said, “There is sickness here, but I am not sick.” The statement made no sense to me. But, inspired by the story, I persevered, repeating over and over “There is sickness here, but I am not sick . . . There is sickness here, but I am not sick.” After a few minutes, I realized, “Of course! There is sickness in the body, but
I
am not sick!”
 
It was a revelation and a source of great comfort. After a time, however, I decided to investigate more deeply. When I did, this question arose, “Who is this ‘I’ who isn’t sick?” This question led me to consider
anatta
or “no fixed and unchanging self.” The Buddha’s teaching on no-fixed-self was (and still is) revolutionary. It is the principal way in which he broke from the religion of his birth, Hinduism. Of course, to communicate with others, we have to use conventional terminology such as “I Me Mine” (to borrow from the title of the George Harrison song on the
Let It Be
album). If I’m unwilling to use the term “Toni Bernhard” I can’t get a driver’s license or a disability check. And, as this very paragraph illustrates, I’ll continue to use self-referential terms in this book. But I can use the word “I” and, even as the word emerges from the mind, still contemplate questions such as: “Who am I? 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?” This is worth investigating, for all of us.

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