How to Be Sick (11 page)
Authors: Toni Bernhard,Sylvia Boorstein
Do any of those sound familiar?
Having a strong grounding in the reality of no-fixed-self, as we discussed earlier, helps one to maintain equanimity in the face of these types of comments. 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 are just arising and passing 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.
“Just drink coffee” belongs to a category of comments that caregivers have to face too: people’s suggestions for treatments and cures. 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. 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.
These 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 treatments, they are genuinely trying to be helpful. Unfortunately, it’s frustrating and stressful to be continually told to try things you know won’t help or that you can’t possibly undertake. The best way to gracefully “not be there to receive” these well-intentioned comments is to cultivate “wise speech,” which we’ll address in more detail later, but suffice it to say that 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, a dear friend 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. Her therapist told her to say “thanks” and then promptly put the item under her bed when the person left.
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 hard to stay calm and serene in these circumstances, and it’s hard for caregivers too. Before I introduce two equanimity practices that I find quite 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, the chronically ill do have days when we function better than others. We just 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.
. 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, the chronically ill do have days when we function better than others. We just 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 get better!” 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.
. 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 get better!” 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 that evenness of temper that is at the heart of equanimity. As I write, I can think of six different major treatment regimes 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 we find ourselves hanging out there 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 complain too much.
. 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 we find ourselves hanging out there 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 complain too much.
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 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. 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.
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. 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 readers 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 the 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 work-up.
▶ An infectious disease doctor asked me to email him ahead of our appointment the results of my own research into possible treatments. I spent hours researching online, writing, and then editing an email for him that would be succinct but thorough—at some cost to my health and well-being. 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.
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.
The challenge is to not let this insight slip into indifference, because indifference is a subtle aversion to life as it comes to us. Indifference turns the serene acceptance of “Things are as they are” into “Things are as they are—so who cares?” This is why my notes from Ajahn Jumnian’s visit and my memory of the joy that emanated from him are still so 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 opera, I was too sick to leave the house. I was terribly 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.
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 opera, I was too sick to leave the house. I was terribly 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 5:30. 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 lie in bed and listen to music or find a movie on TV.”
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