How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  Practice tonglen.

  As I described in the previous chapter, tonglen is a powerful way to feel connected to others; this helps ease the emotional pain that often accompanies isolation. You can begin by breathing in the suffering of others. Then, on the out-breath, breathe out whatever measure of kindness, compassion, and peace of mind you have to offer them, even if it’s just a little bit.

  I didn’t discover the healing power of tonglen until I’d been chronically ill for six years. Refusing to accept that I was too sick to throw a welcoming party when my granddaughter Cam was born, I made all the arrangements from my bed. But when the day arrived, I was too sick to attend. After I broke the news to my son over the phone, I hung up and began sobbing.

  After about ten minutes, I suddenly realized that there were people all over the world who, like me, were too sick or in too much pain — or both — to be able to attend a special gathering. I began to picture these people in my mind, as vividly as possible. Then I breathed in their sadness and sorrow, and I breathed out whatever kindness, compassion, and peace of mind I had to give them.

  As I did this, I became aware that I was breathing in my own sadness and sorrow, and that when I breathed out kindness, compassion, and peace of mind for them, I was also sending these sentiments to myself. I realized that tonglen was a two-for-one compassion practice: I wasn’t just cultivating kindness, compassion, and peace for others for whom isolation was painful; I was cultivating it for myself.

  I encourage you to try this the next time that being isolated due to limitations imposed by your health leaves you feeling sad and sorrowful. Remember that if you find it difficult to breathe in other people’s suffering, modify the practice. Rather than taking in their suffering on the in-breath, breathe normally and call to mind others who, like you, are suffering emotionally from being isolated. Then, in whatever way feels comfortable to you, send them thoughts of kindness, compassion, and peace of mind.

  I love the effect that this practice has on the unpleasant feeling that I’m missing out on everything. When I practice tonglen, any mental suffering that isolation has triggered becomes manageable because I feel deeply connected to others who are feeling the same way. As eco-philosopher Joanna Macy said in the epigraph that begins this chapter, “The heart that breaks open can contain the whole universe.”

  VI. Enjoy the Life You Have

  29

  Beware of “Good Old Days Syndrome”

  Remembrance of things past is not necessarily the remembrance of things as they were.

  — MARCEL PROUST

  FOR THE MOST part, I’ve adjusted to my new life but, occasionally, I still catch myself engaged in distorted thinking about the past. I’ve taken to calling it “Good Old Days Syndrome.”

  When it attacks, I put my pre-illness life on a pedestal. My thinking runs along these lines: “Before I got sick, everything was perfect: working at the law school was always a pleasure; my family life was ideal; I was free to go wherever I wanted, whenever I wanted.”

  True, true, and true? Not exactly. Being a law professor was not always enjoyable. Workloads could be demanding; reading exams and papers could be sheer drudgery. And although I enjoyed most of the students, occasionally one could make my life difficult. When I was the dean of students, one troubled student was the stuff of nightmares; for a brief time, I had to be given police protection.

  My family life was definitely good, but it could be stressful at times. We had our share of conflicts and disagreements, some of them temporary, others ongoing.

  And do I really believe that I could go anywhere I wanted to go at will?

  No, life wasn’t perfect before I got sick. It had its share of easy times and hard times, of getting my way and not getting my way. When I find myself idealizing that “old” life by convincing myself that I was always happy, I try to remember that this is a distorted view of the past that invariably leaves me feeling bad about the present.

  We also tend to reminisce about other eras as if they were the Good Old Days. In his NBC newscast of April 8, 2013, Brian Williams began his report on the death of Annette Funicello by wistfully referring to the 1950s as “a sweeter era, one of genuine innocence.” I don’t think so. Not only was that the era of Red baiting, but in those “sweet and innocent” 1950s, in many places in the US, it would have been a crime for my two children to marry the people they fell in love with — simply because those two people happen to be of different races than my children.

  My Good Old Days era is the ‘60s. Ah, those were the days: rock and roll, flower power, love love love. And yet those were also the days of the civil rights struggle and its associated atrocities. I once saw a documentary about Birmingham, Alabama, in 1963; police used hoses and police dogs to stop children from peacefully marching to protest segregation. (The children had to march by themselves because their parents had been told they’d lose their jobs if they participated even during off-work hours.) The footage in the story showed children being bitten by police dogs and knocked to the ground by high-powered hoses.

  And then there were earlier eras when people died of diseases that we’re now protected against by popping a pill or getting a vaccination. A family friend who grew up in the 1930s once told me that at the first sign of sniffles in the winter, her parents wouldn’t let her play outside until spring. They didn’t want to take a chance that the sniffles would turn into bronchitis or some other kind of bacterial infection, for which, today, we’d just take an antibiotic.

  Try this test. The following passage was written by a well-known author. Take a guess at when she wrote it:

  We are so overwhelmed with things these days that our lives are all, more or less, cluttered… Everyone is hurrying and usually just a little late. Notice the faces of the people who rush past on the streets… They nearly all have a strained, harassed look, and anyone you meet will tell you there is no time for anything anymore.

  What’s your guess? 2015? 1990? Whenever you were growing up? Does it have you waxing nostalgic about the Good Old Days when life was slower-paced and much more quiet?

  Test over: It was written in 1924 by Laura Ingalls Wilder — while living on a farm in rural Missouri!

  Here’s an account of a recent attack of Good Old Days Syndrome. My husband was out of town, so I had to go to the pharmacy on my own to refill a prescription. I ran into a friend whom I hadn’t seen for about ten years. We embraced and found a place to sit and then chatted for about fifteen minutes, catching up on news about our families and our mutual friends.

  After we parted, I was overcome with sadness and fell into a funk over this lost friendship, which I was suddenly cherishing deeply. As I do when I recognize that I’m dissatisfied and unhappy, I looked for the source of my misery in some kind of frustrated desire. I traced the feeling until I found that place where I wasn’t getting what I wanted. And there it was: I wanted this friendship to be as wonderful as it once had been.

  Then it dawned on me; this friendship had never been the way I was fantasizing it to have been in the Good Old Days. She and I were never truly close. We mostly saw each other because we had a few friends in common. We liked each other well enough, but neither of us was motivated to build a close relationship. And yet there I was, mocking up a distorted memory of the Good Old Days — and then feeling miserable about it.

  As soon as I became aware of this distorted thinking, my funk lifted. Yes, I was still a bit blue, but it was a sadness that periodically arises over my isolation and lack of contact with the many people I used to hang out with. I know this sadness well; it comes and goes. I can ease its pain by being extra kind to myself. This “comes and goes” sadness is an entirely different feeling from the miserable mood I’d fallen into from having romanticized a Good Old Days relationship with this woman, when that relationship had, in fact, never existed.

  So be on alert for Good Old Days Syndrome and remember that life has its ups and downs, its joys and sorrows, its justices and injustices, in
every era and in every decade.

  30

  Why Not Me?

  Freedom is instantaneous the moment we accept the way things are.

  — KAREN MAEZEN MILLER

  A WELL-KNOWN BUDDHIST story known as the Mustard Seed helped me learn that continually asking “Why Me?” was an unrealistic assessment of the human condition that had become an ongoing source of suffering for me.

  In the Mustard Seed story, Kisa Gotami was a young mother who refused to believe that her young son had died. She carried him door-to-door in her village, pleading for medicine. People told her that it was too late for medicine, but she was unable to understand or accept that. Then someone suggested that she ask the Buddha for medicine. When she did, he told her to bring him a mustard seed from a house that had never experienced death.

  She began going door-to-door again, this time telling people that the Buddha needed a mustard seed to make medicine for her son. No one refused her request. But when she asked, “Has this house experienced death?” the response was always, “Yes, of course,” and so she’d leave empty-handed.

  After some time, she realized that impermanence and death were universal. She buried her son and returned to the Buddha. When he asked if she had obtained the mustard seed, she said: “Finished is the matter of the mustard seed. You have restored me.”

  This may seem like a harsh tale, but I appreciate how the Buddha knew that the best way for Kisa Gotami to make peace with one of life’s harsh realities was to touch that reality firsthand, rather than listen to a lecture from him.

  Whenever I hear the Mustard Seed story, I think about how I’ve responded to traumatic events in my own life. Like everyone else, my life has had its share of sorrows — some of them deep sorrows. My father’s death when I was ten years old is at the top of the list. Becoming chronically ill in 2001 is near the top.

  My father and I were extremely close; his death was devastating to me. I remember looking at other kids my age and asking “Why me?” over and over again, in an achingly painful refrain. I was angry at the world and (it’s hard to admit) angry at my father for dying. Unfortunately, no one in my life had the skill to tell me a child’s version of the Mustard Seed — a tale that could have gently communicated to me that life is unpredictable and can feel horribly unfair but that, with time, I’d be able to accept what happened and begin to enjoy life again.

  Many decades later, when I got sick and didn’t recover, the “Why me?” refrain started up again. I blamed myself for losing my career and for having to give up so many activities that I loved. I felt unfairly treated by the world and by my body. But repeatedly asking “Why me?” served only to intensify the resentment I was feeling and the blame I was directing at myself.

  After several years, I finally began to change my response to being chronically ill. Remembering the Mustard Seed story helped; it enabled me to accept that all people face unexpected upheavals in their lives. This meant that my “Why me?” refrain — which left me feeling as if I’d been singled out in some way — was a distorted view of the human condition.

  I was also helped by the writings of Zen teacher Charlotte Joko Beck. In her book Everyday Zen, she writes:

  Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.

  This passage was transformative for me. “Why me?” became irrelevant when I realized that my life was just my life, that it was all right, even though it included giving up a career years before I felt ready, feeling sick every day, and being severely restricted in my activities. It’s just my life. The realization that there was nothing wrong with my life was a tremendous relief because it meant there was nothing wrong with me.

  I was also helped by country music artist Rosanne Cash. In October 2009, she was a guest on NPR’s Fresh Air. Cash had put her career on hold because she had to have brain surgery for a rare but benign condition. The host, Terry Gross, asked her if she ever found herself asking “Why me?” Cash replied “no” — that, in fact, she found herself saying “Why not me?” since she had health insurance, a career she could keep despite the need for a long recuperation, and a spouse who was a wonderful caregiver.

  I know that not everyone is fortunate in the ways that Rosanne Cash mentioned. For many people, stress over money and lack of support are ongoing challenges. And yet, remember Kisa Gotami and the mustard seed; no one gets a pass on life’s difficulties. Not even Ms. Cash — think about the stress and the fear she must have experienced before and after her brain surgery, with its risks and uncertain outcome. Rosanne Cash’s “Why not me?” drives home to me the reality that life is not necessarily fair, even though as children, we’re taught that it should be.

  Odd as it may sound, the day I realized that life is not fair, I felt a burden lift off my shoulders because, at last, I could give up the exhausting but fruitless battle to make it fair. It’s been such a relief that I now count the expression “Life isn’t fair” among my equanimity practices. When I don’t expect life to be fair, I’m open to the way it actually is at the moment, including the unexpected turns it takes along the way — even the sorrowful turns.

  As Joko Beck suggests, there’s nothing wrong with us when the going gets rough. Even when our expectations are turned upside down, it’s just how life is for us. This perspective helps us rest in the accepting calm of equanimity. It also opens the door for self-compassion to arise because, instead of turning away in aversion from our struggles, we open our hearts to whatever life is serving up at the moment.

  Inspired by an ancient Buddhist story, a contemporary Zen teacher, and a country music artist, when I start to sink into that “Why me?” way of thinking, whether it be over the “unfair” turn my health took in 2001 or over any disappointment or sorrow, I know I’ll feel more at peace and enjoy life more if, in a kind and gentle voice, I turn “Why me?” into “Why not me?”

  31

  Don’t Let Envy and Resentment Keep You from Enjoying the Life You Have

  Human happiness is a disposition of mind and not a condition of circumstances.

  — JOHN LOCKE

  WHEN I WAS twelve, I discovered paradise — a chain of islands halfway across the Pacific Ocean from my Los Angeles home. Hawaii. It was a difficult time in my life. My father had died two years before. Losing him was a shock, and I still missed him terribly. I was entering my teenage years as a sullen and self-conscious kid. Then my mother took me and my brother to Hawaii, and I was happy for the first time since I’d lost my father.

  Seeing the difference in me, she took us to the islands three summers in a row. I loved the tropical climate. I loved the fragrant air. I loved the music. And I loved to surf. When I was riding a wave, that sullen teenager felt carefree and happy.

  As an adult with a young family, I couldn’t afford to go to Hawaii. However, I needed only to hear Hawaiian music to feel transported back to paradise, always with the thought “Some day, some day.”

  As soon as we could afford vacations, I whisked the family off to Hawaii. From then on, my husband and I went almost every summer, first with our children and then, after they’d grown, just the two of us. We explored every island that allowed visitors. In 1995, I found the hideaway on Molokai that I wrote about in chapter 2. We returned to it year after year.

  When I became chronically ill in 2001, abruptly, the trips stopped. I haven’t been able to travel since. For many years, I was angry at my body — as if I’d been wronged by it because it was keeping me from doing what I wanted to do. That Want Monster from chapter 5 was whispering loudly in my ear! But I could not get my way.

  I’ve worked hard to make peace with this unexpected change in my life plans. For the most part, my suffering over not being able to travel has given way to an appreciation for the life I do have, altered though it is.

  Then one day in 2012, my close friend Kari told me that she and her family were about to leave for a two-week vacation in Hawaii. I felt a rush of sadness b
ut it passed quickly, giving way to that joyful state of mudita that I wrote about in chapter 28. I felt genuinely happy for my friend. “Be sure to post pictures!” I told her enthusiastically.

  But when she uploaded that first picture — a beach on Kauai — I drew back from it physically and mentally, and this turned out not to be a momentary reaction. I couldn’t bring myself to look at any of the pictures she was posting, and I became agitated and irritable. “I was so happy for Kari. What’s going on with me?” I wondered.

  It didn’t take long to realize that I was envious that Kari was in Hawaii and I was not. Even more, I felt a touch of resentment. Envy arises when we want what someone else has. Resentment is also present if we believe we’re not getting it because of some perceived unfairness or injustice in the world or on the part of another person. My wanting to have the Hawaii experience that Kari was having is an example of envy. The bitter feeling that it wasn’t fair that she got to go and I didn’t is an example of resentment.

  Given the struggles we face individually and globally, this incident with Kari may seem trivial: a friend was in Hawaii, and I was envious and resentful. Big deal. And yet when stressful emotions take hold of us, even over a minor matter such as a trip we can’t take, they can be so compelling and overpowering that they impair our ability to function effectively in life.

  This is exactly what was happening to me as I grew more and more upset about Kari’s trip, even though I knew it was insignificant in the big scheme of things. What could I do to ease the suffering I was experiencing? I decided to look at envy and resentment through the lens of the four-step approach I introduced in chapter 8, “The Many Benefits of Patience.” Again, here are the four steps: