And so alongside all the other experiences of my life, I made room for fear. I felt a great spaciousness and expansiveness. Soon I became aware that a gentle smile had appeared on my lips, as if to say, “Ah, yes. My old friend, fear.” The seed was sown for a new compassion practice: opening my heart to the full range of emotions that life has in store for me.
At first you may resist these suggestions for treating yourself with compassion. Many of us have to overcome a lifetime of conditioning in which we were taught that looking after our own well-being is selfish. It’s not. We are as worthy of our care and compassion as anyone.
Before I learned to cultivate compassion for myself as a chronically ill person, I passively accepted whatever happened. No matter how intense my suffering, I took no action to alleviate it because I blamed myself for being sick. I recall, for example, an appointment I had with an ear, nose, and throat specialist in the fall of 2001 to evaluate a persistent hoarseness that was a feature of the acute phase of the illness. I dragged myself out of bed for Tony to drive us to the clinic only to find that we had to wait three hours to be seen. I tried every position I could think of to turn the waiting-room chair into a reclining piece of furniture. I slumped down on my back; I slumped down on my side. Then I tried to use the chair as a bed, bending my knees to get my feet up on it and laying the middle part of my body over the hard armrest and my head on Tony’s lap. The physical pain and discomfort was matched by the mental suffering that arose from blaming myself for being sick and subjecting not just me but also Tony to this misery.
Six years later I was taking an antiviral under the supervision of an infectious disease doctor. On the two-hour drive from Davis to the infectious disease clinic, I could lie down in the back of our van, but the wait at the clinic was always longer than the time it took to get there. At the first appointment, I employed my usual techniques of first trying to turn an upright chair into a recliner and then trying to lie across Tony’s lap. It took me weeks to recover from that trip. I dreaded the follow-up appointment.
But at that second visit, having already begun to evoke compassion for myself as someone who is ill, after an hour of waiting I calmly and politely told a staff person that I needed to lie down. To my surprise and relief, after a few minutes, she showed us to an empty room and said I could lie on the examining table until the doctor could see me. When I approached the staff person, I didn’t complain but neither was I passive. Instead, I took compassionate action on behalf of myself. I hope you’ll start cultivating self-compassion this very minute.
I’d like to close this chapter with a quotation often attributed to the Dalai Lama in which he tells us what can happen if we devote our lives to easing suffering in ourselves and others:
If you want others to be happy, practice compassion.
If you want to be happy, practice compassion.
9
Facing the Ups and Downs of Chronic Illness with Equanimity
Let things take their natural course. Then your mind will become still in any surroundings, like a clear forest pool. All kinds of wonderful, rare animals will come to drink at the pool. . . . You will see many strange and wonderful things come and go, but you will be still. This is the happiness of the Buddha.
— AJAHN CHAH
EQUANIMITY is the fourth of the sublime states. The dictionary defines it as “mental calmness and evenness of temper, especially in a difficult situation.” That’s as good a definition as I’ve seen for this central Buddhist concept and practice. Dwelling in equanimity, we are able to greet whatever is present in the moment, including unpleasant experiences, with a mind that is at peace. Indeed, some teachers equate this mental state with enlightenment — also known as awakening, liberation, or freedom.
For a chronically ill person, equanimity can be a particularly difficult state of mind to sustain, and so it helps to have both inspirational teachings and practical techniques at hand. I find the challenges fall into three categories:
maintaining equanimity in the face of the barrage of unhelpful, inaccurate, and often insensitive comments people make about chronic illness (which includes chronic pain and mental illness)
weathering the unpredictability and uncertainty that accompany chronic illness
feeling overwhelmed with loss — lost health, lost job, lost friends, lost mobility, lost money
Naturally, these challenges are not entirely exclusive to those who are chronically ill. Nevertheless, chronic illness can generate a particular need for equanimity.
Insensitive and Hurtful Comments
Anyone who is chronically ill — especially if, as in my case, the illness is not visible to others — will have encountered the first challenge many times: how are we to maintain evenness of temper and calm in the face of comments from others that, even if well-intentioned, are so off the mark that we feel misunderstood and often disregarded?
My Internet wanderings have revealed that the chronically ill are subject to remarks from family and friends that are eerily identical in content and reveal a profound ignorance about what it’s like to struggle with health problems. Here’s a sampling of comments, from Australia to Finland to Switzerland to my own ears in Davis:
“But you don’t look sick.”
“No wonder you feel bad; you never go out.”
“I wish I had time to be sick.”
“Just drink coffee.”
“How come you can’t work when you’re still able to use your computer?”
“I’m tired all the time, too.”
“I saw you pulling weeds in your front yard; I’m glad you’re healthy again.”
“If you were really that sick, you’d be in the hospital.”
“You can’t be that sick if you can write a book.”
Do any of those sound familiar?
Having a strong grounding in the reality of no-fixed-self (discussed in chapter 5) helps us to maintain equanimity in the face of these types of comments. In A Still Forest Pool, Ajahn Chah offers excellent advice on this point:
If someone curses us and we have no feelings of self, the incident ends with the spoken words, and we do not suffer. If unpleasant feelings arise, we should let them stop there, realizing that the feelings are not us. . . . If we do not stand up in the line of fire, we do not get shot; if there is no one to receive it, the letter is sent back.
I love that phrase: “If there is no one to receive it, the letter is sent back.” This is the essence of no-fixed-self and of equanimity. With a mind that is calm and even-tempered, the insensitive comments of others are just not received. Even the word insensitive drops away and words just arise and pass through our consciousness. I wish there had been “no one to receive it” when “just drink coffee” was the sole treatment offered to me by a doctor early in the chronic stage of my illness. I was devastated. It was simply too early in the illness for me to handle the comment with any semblance of equanimity. I sat there “in the line of fire” — and indeed I felt as if I’d been shot. Today I’m more likely to “not be there to receive it,” in the sense that I would not take it personally. I’d know that the comment was just a reflection of his lack of skill and sensitivity as a doctor. If I felt strong enough on that day, I would “send the letter back” with some constructive feedback on the inappropriateness of the comment.
Unsolicited health advice is one of the hardest categories of comments that both the chronically ill and their caregivers have to field. Countless times, Tony has told me about having to politely listen to people discourse on treatments that range from off-label use of prescription drugs to moving to a different city to the most bizarre-sounding treatments. I’ll never forget the time that one person told me that my body was too acidic and I needed to alkalize it by drinking baking soda and water four times a day. Two days later, another person told me my body was too alkaline and I needed to acidify it by drinking apple cider vinegar four times a day.
The most distressing piece of unsolicited advice I’ve received
showed up in my email inbox in response to an article I’d written about my breast cancer diagnosis. The email read: “I’m sorry to hear you have breast cancer. However, because you’re already chronically ill, do not, under any circumstances, continue with radiation. It will destroy your immune system.” The email arrived two days after I’d completed a course of radiation.
In my article I’d emphasized that my intention in writing it was to share my experiences in a way that would be helpful to others. I didn’t ask for treatment advice, but I received a lot of it, including this email, which only had the effect of making me anxious and worried about a treatment I’d just completed.
These types of comments differ from the “If you’re really that sick, you’d be in the hospital” variety because the latter are insensitive and trivialize our condition. By contrast, when people offer treatment advice, they’re simply trying to be helpful. Unfortunately, it’s frustrating and stressful to be told to stop a treatment that you’re committed to or to try something you know won’t help. The best way to gracefully “not be there to receive” these well-intentioned comments is to cultivate “wise speech” — the subject of chapter 16 — but suffice it to say, the Buddha suggests we speak only when what we have to say is true, kind, and helpful.
Wise speech in the face of these suggestions will often be sparse speech, as in, “Thanks for the suggestion.” In the early 1990s, my dear friend Anne was dying of cancer. She told me that almost every visitor arrived with a “cure” in hand, from special teas to amulets she was to wear around her neck. She told me that sometimes she wanted to scream, “I’m in the hands of good doctors, and we’re doing everything we can to keep me alive. I don’t want or need your advice!” But she didn’t say it because she didn’t want to hurt people who were being kind enough to visit. When Anne raised this dilemma at a counseling session, her therapist suggested that she say “Thank you” and put the item down. Then, as soon as the person left, shove it under her bed. It turned out to be just the advice she needed.
Unpredictability and Uncertainty in the Lives of the Chronically Ill
The chronically ill face each day not knowing if we’ll be able to visit with friends and family, if we can manage a trip outside of the house, if we’ll have a bad reaction to a new treatment, if a doctor will be considerate or inconsiderate. We can’t even predict which symptoms will hit us hard on a particular day. It’s difficult to stay calm and serene in these circumstances — for caregivers, too. Before I introduce four equanimity practices that I find helpful, I’d like to look more deeply into some of the ways that unpredictability and uncertainty show up in the lives of the chronically ill.
Activities with others. For those of us who were always dependable when it came to keeping commitments, this sudden uncertainty in the face of people’s expectations for us to make good on our plans can be a source of great anxiety and stress. Although we never feel fully healthy, we do have days when we function better than others. Unfortunately, we can’t predict what days those will be. As a result, we may make plans to have a friend over on a particular day but then have to cancel that morning when we’re unable to get out of bed.
Treatments. As I said, I’ve tried many treatments, some for symptom relief, some as possible cures. My body’s response to a treatment is unpredictable. When I’ve undertaken one as a possible “cure,” it’s been a challenge to sustain a balanced state of mind that would allow me to accept success or failure with calmness and serenity. At the beginning of the experimental use of an antiviral so powerful I was monitored by three doctors, I told myself, “Maybe it will work, maybe it won’t. No expectations; it’s just an experiment.” But when I experienced considerable improvement after six months, I thought, “This is it! Forget that ‘maybe, maybe not’ stuff, I’m going to recover!” Then when the positive effects of the antiviral reversed, Tony and I were crestfallen. I felt as if I’d plummeted into a deep abyss.
It was an eye-opening experience. I realized that to live gracefully with this illness, I was going to have to do a better job cultivating the evenness of temper that is at the heart of equanimity. As I write, I can think of nine different major treatment regimens I’ve undertaken that resulted in initial success, only to be followed by disappointment. (One infectious disease doctor surmises that this might happen because my immune system adjusts to each new treatment, gradually reversing its effects.) Nothing illustrates the value of being able to ride the ups and downs of life with equanimity more than the experience of treatments that initially succeed and then fail.
Doctors. Finally, there’s the unpredictability of the outcome of seeing yet another new doctor. For the chronically ill and their caregivers, the medical world is like a club we never asked to join but now find ourselves hanging out at all the time. When I first got sick, I approached each referral to a new specialist with high hopes, only to be let down by almost every one of them. Those with chronic illness — especially a mysterious one — have a name for this: the hot potato treatment. And I wasn’t being sent from doctor to doctor because I was a difficult patient. Long before getting sick, I’d mastered the art of being a good patient: be prepared, be deferential, be succinct, don’t whine or complain.
I’m not indicting the medical profession; that would be painting with too broad a brush. I’m in a good position to know the harm of doing that, having spent my professional life listening to people tell nasty jokes about lawyers being worse than roadkill. My standard in-person response to that was, “Good thing there were lawyers around to represent those plaintiffs in Brown v. Board of Education.” That usually did the trick. And, naturally, I’ve had positive experiences with doctors. I saw an endocrinologist who was honest with me from the start. She said, “I don’t know if what’s wrong with you is related to your endocrine system, but I’ll do my best to find out.” She did indeed do her best and showed great compassion when she was unable to help me. I’ve been given top-notch care by the oncologists at the UC Davis Comprehensive Cancer Center. And my own primary care doctor is remarkable. He’s willing to stick with me even though he can’t “fix” me, he’s open to my suggestions, and he gives generously of his time. He’s never let me down.
That said, here’s a taste of encounters with doctors that I’m sure will sound familiar to those of us who inhabit the world of the chronically ill:
A rheumatologist looked me in the eyes and told me he was going to make me well. Tony and I were so excited when we left his office. But when the tests he ordered came back normal, he coldly and bluntly told me, “Go back to your family doctor.”
A neurologist told me at my first appointment that I would be his patient. He regaled Tony and me with his expertise about post-viral syndromes, talking at length about the immune and nervous systems. As we did with the rheumatologist, we left his office exhilarated, given his optimism about what he could do for me. But when we returned for a follow-up appointment, he showed a cursory interest in me, focusing instead on impressing the medical student he had in tow. I was treated as tangential to whatever agenda he had in mind with this student. He spent about ten minutes with us and was gone, offering no help. Tony and I left feeling utterly deflated. I still can’t explain why the follow-up visit bore no resemblance to the initial workup.
An infectious disease doctor asked me to email him ahead of our appointment the results of my own online research into possible treatments. I spent hours researching the web, and then writing and carefully editing an email to him that would be succinct but thorough — at some cost to my health. When he came into the examining room, he acknowledged having received the email but said he hadn’t read it. When I politely expressed disappointment, he was miffed and said he’d call me when he’d read it. I never heard from him.
Another infectious disease doctor asked me to make a graph of my day-to-day progress on the antiviral treatment he was monitoring. I painstakingly created a chart based on notes I kept in a daily journal. When I was responding well to the medication,
he loved my chart, even calling colleagues into the room to look at it. But when the medication’s benefits began to wear off, he wouldn’t even look at the chart I had so carefully updated since my last appointment. Even worse, he blamed me for the failure of the antiviral. I wasn’t resting enough. I wasn’t doing the right kind of exercise. I rested at every opportunity, and exercise? It was an exercise just getting to the appointment. When it was clear his treatment wasn’t going to work for me, he dropped me . . . like a hot potato.
Equanimity Practices
Here are four equanimity practices that can help with the particular challenges that come with being chronically ill. I hope you’ll give each of them a try.
Whatever happens, it’s okay. In the 1990s, when the Thai Forest monk Ajahn Jumnian came for his annual visit to Spirit Rock, I faithfully attended. Bubbling over — as he always was — with joy and laughter, one day he suddenly began discoursing on equanimity. I got out a pen and took these notes:
When people say, “Ajahn, let’s go for a beautiful walk,” fine, I’ll go. If they don’t ask, that’s fine, too. I don’t expect a walk to be any more satisfying than sitting alone. It could be hot or windy out there. If people bring me delicious food, great. If they don’t, great. I need to diet anyway. If I’m feeling good, that’s okay. If I’m sick, that’s okay, too. It’s a great excuse to lie down.
These few sentences, scribbled on a scrap of paper as Jack Kornfield translated, have become the centerpiece of equanimity practice for me. I rediscovered the notes several years after becoming sick. Reading them with my new circumstance in mind, I understood that the essence of equanimity is accepting life as it comes to us without blaming anything or anyone — including ourselves. I’d been getting despondent when a treatment didn’t work and becoming angry when a doctor didn’t live up to my expectations. I was trying to control the uncontrollable. Some treatments work. Some don’t. Some doctors come through for us. Some don’t.
How to Be Sick Page 8
