How to Be Sick

by Toni Bernhard

  My notes from Ajahn Jumnian’s visit and my memory of the joy that emanated from him are still inspiring. Now I cultivate equanimity by saying, “If this medication helps, that will be great. If it doesn’t, no blame. It wasn’t what my body needed.” “If this doctor turns out to be responsive, that will be nice. If he or she doesn’t, that’s okay. Any given doctor is going to be how he or she is going to be. It’s not in my control.”

  I try to remember Ajahn Jumnian’s little gem when I’m faced with the unpredictability of being able to participate in activities or visit with people. Early on in my illness, I bought tickets to the Sacramento Opera’s production of Carmen. I thought that even if Tony and I could only stay for Act I of the matinee, it would still be a wonderful experience. But on the day of the opera, I was too sick to leave the house. I was resentful and angry that we couldn’t go through with the plans I’d so carefully made — including calling to find out how long each act lasted and where the closest disabled parking was. The resentment and anger turned to tears, making it harder for Tony. I simply did not have a strong enough equanimity practice to handle the uncertainty and unpredictability that had so unexpectedly become my constant companion in life.

  Fast-forward six years. An old family friend was in town and Tony invited him to dinner. I carefully arranged my week so I wouldn’t have other commitments in the days leading up to the dinner. This greatly increased the likelihood that I’d be able to join him and Tony for a bit, even though I rarely leave the bedroom after five thirty. But on the evening he came, I was too sick to visit. Had we happened to have scheduled the dinner the night before, I would have been able to socialize for a while.

  However, I didn’t react the same way I had to the missed opera experience. I didn’t lie in the bedroom and cry that night. Instead I recalled Ajahn Jumnian’s words and said to myself, “If I could have joined them, that would have been nice. Since I can’t, that will be okay, too. I’ll listen to music or find a movie on TV. As Ajahn Jumnian said, it’s a great excuse to lie down!”

  The past few years I’ve been trying a variation of this practice by consciously starting a sentence with these words: “It’s okay if . . .” Doing this helps me stay steady and calm when the everyday challenges of chronic illness begin to throw me off balance. For example, on a day I’m feeling particularly sick or my pain levels are high, I’ll say to myself, “It’s okay if I feel awful today; that’s how chronic illness feels sometimes.”

  The more I do this, the braver I become with my “It’s okay if . . .” formulations. Recently I’ve been trying this out: “It’s okay if I’m chronically ill for the rest of my life.” Whoa! The rest of my life? Can that ever be okay? It turns out that, for me, it can. If I’m honest with myself, I might very well be chronically ill for the rest of my life. If that’s the case, I know from experience that I feel better emotionally and I’m happier the more I can accept that possibility without resentment and bitterness. And so I’ve been continuing with this particular “It’s okay if . . .” practice and, at times, I’ve truly felt at peace with the possibility that chronic illness is here to stay.

  I’m grateful to Ajahn Jumnian for giving us a glimpse that day into how his mind works.

  Letting go, even just a little. A second equanimity practice comes from another Thai Forest monk, Ajahn Chah, whom we’ve heard from before. In his book A Still Forest Pool, he offers a statement so powerful that I’d committed it to memory long before getting 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.

  I love this teaching because it allows me to take baby steps in the direction of equanimity. I’ve found that before I can even take that first step and “let go a little,” I first have to recognize the suffering that arises from my intense desire for certainty and predictability. Just seeing the suffering in that desire loosens its hold on me, whether it’s wanting so badly to be at a family gathering or clinging to the hope for positive results from a medication or desiring for a doctor not to disappoint me. Once I see the suffering in my mind, I can begin to let go a little. As soon as I do that, I get a taste of freedom that motivates me to let go a little more.

  I used this practice while waiting for my ankle to be x-rayed. There I was, twenty-four hours after slipping down the two steps, my ankle still throbbing in pain, my knees bruised from crawling around the house, my body aching in fatigue from sitting in a wheelchair way beyond my capacity to be in an upright position. As thoughts whirled around about whether I could handle this injury on top on my illness, I searched for help in coping with the pain in my body and the suffering in my mind. Help came from Ajahn Chah’s teaching on letting go. I thought, “I’m suffering because I don’t want this to be happening but, like it or not, it is happening, so can I let go even just a little — just a baby step?” I could. And, having done that, I could take another baby step. After a few minutes, I was flooded with equanimity — with the taste of freedom that comes with peaceful acceptance of the unexpected complications that arise in our lives.

  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. The strength of our equanimity in the face of not getting our way is the measure of whether we will know the peace and freedom to which Ajahn Chah refers. It’s the measure of whether, as he said, our “struggles with the world will have come to an end.”

  In the previous chapter I described how I spoke compassionately to myself while I was waiting for the many test results associated with breast cancer. During that time, I also relied on Ajahn Chah’s equanimity practice. When I found myself overcome with worry and fear, first I’d repeat the compassion phrases I’d come up with, acknowledging how hard it was to wait. Then I’d ask myself if I could let go of the worry and the fear just a little, since I had no control over the results of the tests anyway. When I let go just a little, the worry and fear lost their tight grip on me, and I could let go a little more. Repeating these baby steps, I was often able to reach a place of calm acceptance that, like it or not, waiting was the order of the day. When that calm acceptance deserted me, I’d go back and start over, first with the self-compassion phrases and then letting go, even just a little.

  This can be a powerful practice. Imagine letting go completely, so that it’s okay if you can’t go to a family event, a medication doesn’t help, or a doctor is disappointing; it’s even okay if a test result isn’t what you’d hoped for. I think of this as the state of wishlessness, a word I first learned from Ayya Khema. It’s a tall order to let go completely, but simply imagining it inspires me to let go a little. Then it’s easier to let go a little more, and then a lot. And every once in a while, I let go completely and, momentarily, bask in the glow of that blessed state of freedom and serenity that is equanimity.

  Giving in instead of giving up. The challenge with equanimity practice is to not let accepting things the way they are slip into indifference, because indifference is a subtle aversion to life as it is. Indifference turns the serene giving in of “Things are as they are” into the mental pain of giving up, as in “Things are as they are — so who cares?”

  Giving up can make us feel like failures. We may begin to see ourselves as mentally weak and undisciplined. This is disheartening and tends to give rise to the misery of self-blame — that inner critic again. By contrast, giving in is a type of surrender. I think of it as sweet surrender. It’s the act of accepting what we cannot change and then looking for how to live a fulfilling life within our limitations.

  Here are some examples of how you might turn giving up into giving in:

  Giving up: “I don’t care what happens; chronic illness has ruined my life.”

  Giving in: “Yes, I’m frustrated and sad at times that I’m not in good health, but a good life can take many
forms, so let me think about what I can do that’s within my limitations.”

  Giving up: “Because I couldn’t visit with my friend for very long today, it wasn’t worth seeing her at all.”

  Giving in: “Dwelling on what I couldn’t do makes me feel sad and even angry. The fact is, I had a good time while it lasted. Now I have to rest.”

  Giving up: “I hate being sick. I hate being in pain. I hate being depressed. I give up.”

  Giving in: “Treating chronic illness as the enemy drains what little energy I have. Everyone’s life has its challenges; this one is mine. I give in to it and will try to find a measure of peace within these less than ideal circumstances.”

  A medication I was prescribed in 2016 caused me to become clinically depressed. For several months, I had a front row seat for the mental suffering that accompanies giving up. I didn’t want to do anything. I lost interest in the activities I used to enjoy — writing, crocheting, tending to my bonsai trees. I couldn’t be bothered. I also had a recurring feeling of dread about the present and the future. It was a new experience for me, and it was not a pleasant one. (I’ve joked with Tony that it’s a good thing my publisher proposed this new edition of How to Be Sick after I’d stopped taking that medication and the depression had lifted because, otherwise, I would have said no.) Because of my experience with this medication, I’m now keenly aware of how hard it is for people with chronic depression to change that “giving up” feeling into the peace and contentment of “giving in.” I hope this section has made it possible.

  Accepting loss. Facing losses that feel overwhelming — from lost health to lost friends to lost livelihood — deeply challenges our cultivation of equanimity. But we can sometimes find teachings and practices in the most unexpected of places. One day I was watching an interview on TV with the actress Susan Saint James. Three weeks before the interview, her fourteen-year-old son, Teddy, was killed in a plane crash. Her husband and another son were seriously injured and several of the crew members died. In the interview, Saint James talked about how close she was to Teddy because he was her youngest child and the only one still living at home; due to his work as the head of NBC Sports, her husband, Dick Ebersol, was gone much of the time. She said that she and Teddy were like roommates and had become best friends.

  Then, emanating deep calm and acceptance, she made this most astonishing comment: “His was a life that lasted fourteen years.” I gasped. Could I make that statement with such equanimity should one of my children or grandchildren die? I still don’t know the answer to that question. But Susan Saint James’s words and the serenity with which she spoke them entered my heart that day. Ever since, when I find myself in grief and despair over the many losses I’ve had to face due to chronic illness, her words are my equanimity practice.

  When I feel myself mourning my lost career as a law professor or a lost friendship, I say to myself, “This was a career that lasted twenty years” or “This was a friendship that lasted twenty-five years.” If I feel overwhelmed by the loss of my health and its consequences, I say to myself, “This was a body that was illness-free long enough to be active in raising my children and to not be a burden to them when they were young; to be a part of their weddings; to teach and be of personal support to many law students; to travel and keep company with Tony out in the world.”

  Inspired by Susan Saint James’s courage, which reinforces the teachings of the Buddha that I’ve learned, I’m able to say these equanimity phrases without bitterness. I can even be genuinely grateful for those years. When overcome with the losses you’ve encountered, whether you are chronically ill or the caregiver for a loved one who is chronically ill, I encourage you to try the equanimity practice I cobbled together from the words of a remarkable woman facing the most devastating loss I can imagine.

  This section of the book has covered the four sublime states: kindness, compassion, empathetic joy, and equanimity. The goal is to cultivate them until they become the natural response to whatever you encounter in life. As you undertake these practices, I recommend that you keep what the Korean Zen Master Ko Bong called a “Try Mind.” I love this idea because implicit in Try Mind is “Forgiving Mind”: “I tried to wish that person well today and I tried to feel equanimous about my circumstances, but I just couldn’t do it. That’s okay. I’ll try again tomorrow.”

  Cultivating the sublime states opens the door to the peace and well-being we all seek. May you come to greet all of life’s experiences with an open heart.

  Turnarounds and Transformations

  10

  Getting Off the Wheel of Suffering

  Nothing whatsoever should be clung to.

  — BUDDHADASA BHIKKHU

  MANY TEACHERS SUGGEST starting Buddhist practice by learning how to meditate, but I was an academic and so, as was my habit, I hit the books first and did some research on the subject. So great was my need to put scholarship first that soon after becoming interested in Buddhism in 1992 I researched and wrote a twenty-page paper, complete with footnotes that referenced over three dozen books. I titled it “Introduction to Buddhism.” Given that I can’t recall giving this little piece of scholarship to anyone, I appear to have been introducing myself to Buddhism.

  I started my study with a book we already owned: What the Buddha Taught, written in 1959 by the Sri Lankan monk and scholar Walpola Rahula. In 1992, when I took it off the bookshelf, this work was still considered by many to be the seminal guide for introducing Westerners to Buddhism. It was not an easy read, especially in contrast to the large number of user-friendly books on Buddhism available today. Rahula’s use of phrases such as “dependent origination,” “conditioned genesis,” and “cessation of volitional formations” had my mind spinning. When I reached Rahula’s discussion of the wheel of suffering, I might well have been derailed in this new spiritual pursuit had I not employed a strategy that had served me well in my studies: I skipped it and moved to a teaching that was more accessible.

  Years later, my Buddhist practice well established, I tackled that teaching again through the writings of Ayya Khema and S. N. Goenka, and it began to make sense. When the Iron Eagle Flies, by Ayya Khema, and The Art of Living: Vipassana Meditation as Taught by S. N. Goenka, by William Hart, were particularly helpful.

  The Buddha’s teaching on the wheel of suffering describes a series of twelve conditions that give rise to suffering. With the caveat that this will not be a comprehensive nor scholarly analysis, I’m going to jump into the middle of the series and explain how I use these teachings as a practical tool to help alleviate the mental suffering that accompanies chronic illness.

  As we go through life, we repeatedly encounter mental and physical contacts through our six senses. (Buddhism treats the mind as a sixth sense, along with sight, smell, touch, taste, and hearing.) We experience these contacts as pleasant, unpleasant, or (less frequently) neutral sensations. If the experience of the contact is pleasant, we want more of it. If the experience of the contact is unpleasant, we want it to go away, which is simply another form of desire — the desire for it to go away — usually referred to in Buddhism as aversion. In chapter 3, when I described the second noble truth as “Want/Don’t-Want Mind,” I was referring to our desire for pleasant experiences and our aversion to unpleasant ones. (To be honest, “want” and “don’t-want” sum up the two mental states I find myself in a good part of the day!)

  Having reacted with desire or aversion to what we’ve come in contact with through our six senses, the mind sticks like glue to the desire or the aversion. This “place” on the wheel of suffering is varyingly referred to as clinging or attachment and is Want/Don’t-Want Mind’s close cousin. Once clinging or attachment takes hold, the sense of a solid self arises — as if the glue has dried. In short, we are reborn moment to moment into self-identities we create by clinging or attaching to the objects of our desires and aversions.

  We then have to live out the consequences of the birth (or rebirth, if you like) that we’ve take
n in the moment. Here’s a simple example. Someone merges in front of us in traffic even though we have the right-of-way. Note that this contact with the world involves more than one sense: the eyes see the car merge, the ears hear the car move, the sixth sense thinks, “He’s cutting in front of me even though I have the right-of-way.” The part of the contact involving the mind is experienced as unpleasant. Before we can stop ourselves, we react with aversion to the unpleasantness. In fact, we can’t shake the aversion. It takes hold of us, sticking like glue, putting us right on course for “becoming” and being “reborn” that very moment as a cranky person. And there you have it: dukkha — from the Four Noble Truths.

  The good news is that we can break this cycle before we reach that place of suffering by becoming mindful right at the moment before an unpleasant sensation gives rise to the desire that things be other than they are. S. N. Goenka refers to this as “learning to observe [sensations] objectively.” He says that between the contact and the reaction to a pleasant or unpleasant sensation — a reaction in the form of desire or aversion — stands a crucial step: “When we learn to observe sensation without reacting in craving [desire] and aversion, the cause of suffering does not arise and suffering ceases.”

  That split second between the experience of a pleasant or unpleasant sensation and the arising of desire for more of the former or aversion to the latter is the doorway out — our opportunity to get off the wheel of suffering. We can’t avoid the arising of a sensation after a contact — touching a hot stove is going to feel unpleasant. But Ayya Khema says that the practice is to see that sensation as just a sensation without owning it. After all, she says, if we really “owned” our sensations in the sense of being fully able to control them, we’d never let those sensations be anything but pleasant! This is also what S. N. Goenka means when he says we should learn to observe sensations objectively.