How to Be Sick (18 page)
Authors: Toni Bernhard,Sylvia Boorstein
—RYOKAN, FROM “MY PRECEPTS”
EVEN THOUGH being chronically ill means spending a lot of time alone—which we will delve into soon—we still communicate, just like everyone else. And many of the actions that can cause the greatest suffering or bring about the greatest benefit in our lives are centered on one part of the body: the mouth. Just as the Buddha taught us that we create worlds with our mind, we also create worlds with our speech, so it is important to take great care in how we use it. For the chronically ill, speech—including e-mails, letters, and other written messages—can create support and foster helpfulness or it can increase isolation and alienation.
According to the Buddha, wise speech is endowed with five qualities. It is truthful, spoken with good-will, spoken beneficially, spoken affectionately, and spoken at the right time. These are usually reduced to a formula that contains three considerations:
Speak only when what you have to say is true, kind, and helpful.
It’s a tall order to make all our speech true, kind, and helpful, but we can undertake wise speech as a practice by setting the intention to keep those three qualities in mind before we open our mouths. Even Ryokan in the Zen poem in the epigram that opens this chapter precedes his list of precepts regarding speech with the gentle phrase: “Take care not to . . .” I know that, now and then, I won’t speak truthfully and I’ll also speak unkindly or in an unhelpful manner. But because I’ve set the intention to practice wise speech, as opposed to making it a pass/fail commandment, I can forgive myself when I come up short, reflect on my words, and start anew.
Practice
is the operative word. With practice, we can become quite skillful at putting our words through the filter of true, kind, and helpful before we speak out loud—or hit the send button!
Practice
is the operative word. With practice, we can become quite skillful at putting our words through the filter of true, kind, and helpful before we speak out loud—or hit the send button!
I’ve found that it’s often easy to meet two of the criteria, but not all three. For example, it may be true that a friend hasn’t been in touch for a month, but would it be helpful to confront the friend about it? Before sending a “Why haven’t you been in touch?” email, if we replace the intention to confront with the intention to inquire (“How are you doing?”), the communication might just become kind and helpful. We may discover that the friend hasn’t been in touch because he or she is having work or family problems, which gives us the opportunity to respond with compassion and support rather than self-interest.
After becoming chronically ill, I faced an unexpected challenge in practicing wise speech. I assumed that anyone who cared about me would want to know, in detail, everything about the illness and my attempted treatments. For the first five years, after every appointment with a new specialist or after starting a new treatment, I’d write a long, detailed email, which I would then send to Jamal and Mara and a friend or two. In response, I’d typically get a few supportive sentences.
Not only did I assume that those to whom I was closest wanted to know every detail about my illness, but I now believe that on some level I was also trying to make sure they realized just how sick I was. These detailed descriptions passed the Buddha’s test of truthfulness, but in sending them out, I wasn’t stopping to reflect on whether they were kind and helpful to those receiving them. Yes, I was sick, but everyone’s life has its share of suffering—our old friend the first noble truth—and I wasn’t speaking wisely when I failed to consider this. If Jamal was in the midst of a painful lower back flare or if Mara was overly busy with the many activities she juggles each day, surely it’s neither kind nor helpful to ask them to read and respond in kind to a two-page email that’s loaded with medical jargon and a detailed account of my difficulties. I was sick for five years before it dawned on me that I needed to re-evaluate my understanding of wise speech.
When I looked more deeply, I saw that my relationship with family and friends would be richer and more enjoyable for all of us if I didn’t always talk about my illness. Included in the notion of wise speech is what the Buddha called noble silence—knowing when
not
to speak. Not only did I stop describing my experience with every new specialist and every new treatment, but I looked for things to talk about with family and friends that would bring interest and joy to our relationship. Now I’m much more likely to ask about their lives instead of talking about my illness.
not
to speak. Not only did I stop describing my experience with every new specialist and every new treatment, but I looked for things to talk about with family and friends that would bring interest and joy to our relationship. Now I’m much more likely to ask about their lives instead of talking about my illness.
One time, for example, when I had a cold—“sick upon sick” we call it—I phoned Jamal on a Sunday to say hello. I opened my mouth with the intention to tell him about the cold but caught myself and, instead, asked him what he was up to. We chatted for a half-hour and I never mentioned the cold. I hung up, feeling great about our conversation. It had lifted my spirits and I hope it lifted his.
I don’t even share with Tony the details of every treatment—to alleviate symptoms, to help me sleep, or for the long-shot cure. I use notebooks to keep track of how I’m doing, and the entries are crucial because they enable me to see the effects of different drug dosages and the like. But about five years after getting sick, I decided that I didn’t want my relationship with Tony to be only about the illness. He’s exposed to it every day as it is. (Even when he’s out of town, he checks in by phone or email unless he’s on a silent retreat.) If I sat him down each day and analyzed my latest notebook entry, he’d listen. But unless I need feedback or advice, sharing with Tony the details of every symptom and response to a treatment would be neither kind nor helpful, even though it would meet the truthfulness test.
Noble silence doesn’t spare Tony from listening during my greater moments of need—the occasional 2:00 A.M. sob-soaked outpouring of frustration or the 2:00 P.M. poor me rant as I complain about things I can no longer do. Tony never fails to comfort me when these meltdowns occur. He’s the most unselfish person I know.
In one source, when asked what constitutes wise speech, the Buddha said to practice abstaining from lying, divisive speech, abusive speech, and idle chatter. The first three are obvious, but the last can be tricky. The Buddha cautioned against idle chatter, not just because it often includes vicious gossip, but because idle chatter—frivolous and meaningless speech—is a distraction from truly important matters such as loving-kindness, mindfulness, and the cultivation of wisdom. In addition, engaging in frivolous talk, even innocent gossip, can give rise to envy and other mental states that are a source of suffering. Having acknowledged the pitfalls of idle chatter, now I must confess: since becoming sick, it’s the very type of speech I miss most. Sometimes I long to feel healthy enough to spend a few hours idly chatting away, exchanging trivial anecdotes with family and friends. Chatting can be a way to share a warm exchange and it can lighten the burden of always focusing on serious matters.
My guess is that caregivers also wish they had the luxury to have a chat with people more often. Tony and I live in a small town where he was once an elected official. It’s hard for him to go anywhere without encountering someone he knows. I’m aware that he doesn’t tell me about all the difficulties he encounters out in the world on his own because he doesn’t want to burden me with them, but he did share with me one recurring experience.
When he runs into people in the aisles of the grocery store, they immediately ask, “How is Toni?” He’s not going to lie and tell them I’m better, so inevitably he says, “She’s about the same.” He tells me that this calculated to be short-as-possible response is a conversation killer no matter how lightheartedly he says it. There are lots of grocery aisle topics—idle chatter though they may be—that would be fun for him to engage in: local politics; what our respective children are doing; even the weather! But the fact of my ongoing illness is the elephant in the aisle and it’s hard to get around the beast.
No doubt, other caregivers face this dilemma. Tony and I have talked about how he can work around it. He has tried to be the one to initiate the conversation by quickly asking how the other person is doing (he reports mixed success). As soon as he’s said, “She’s about the same,” he’s also tried moving to a subject that’s topical and has nothing to do with our respective families (he reports better success).
Idly chatting about how your family is doing or your plans for the next week or the upcoming referendum are usually at worst neutral, but I think a key concern the Buddha had about idle chatter was that it can easily degrade into divisive and abusive speech. Not only can this type of speech harm others, but it can harm the speaker too.
The antonyms for
divisive
and
abusive
are
unifying
and
cordial
, respectively. When we speak cordially to others, with the intent to bring unity to the interaction, we are directing loving-kindness toward them. In this way, wise speech goes hand in hand with our cultivation of the sublime states
.
We are also being kind to ourselves, since divisive and abusive speech give rise to mental states—envy, anger, resentment—that are sources of mental suffering and—particularly if you are chronically ill—physical suffering.
divisive
and
abusive
are
unifying
and
cordial
, respectively. When we speak cordially to others, with the intent to bring unity to the interaction, we are directing loving-kindness toward them. In this way, wise speech goes hand in hand with our cultivation of the sublime states
.
We are also being kind to ourselves, since divisive and abusive speech give rise to mental states—envy, anger, resentment—that are sources of mental suffering and—particularly if you are chronically ill—physical suffering.
If you find yourself about to speak divisively or abusively to others, a good antidote is patient endurance. Cultivating patience slows us down, making us more reflective. This enables us to check our speech for the qualities of
true
,
kind
, and
helpful
before we release it into the world.
true
,
kind
, and
helpful
before we release it into the world.
Yes, wise speech can be a tall order. Some days, I’m relieved if I can just meet a couple of Ryokan’s goals—not speaking obnoxiously and refraining from yelling at children! But then I remember that the Buddha considered wise speech to be an indispensable practice on the path to enlightenment, awakening, liberation, freedom. With that reminder, I redouble my effort to communicate with others only using words that are true, kind, and helpful.
17
The Struggle to Find Community in Isolation
I never found the companion that was so companionable as solitude.
—HENRY DAVID THOREAU
ALL HUMAN BEINGS need the company and support of others. We create our world together. But community can be a tremendous challenge for someone who must spend a lot of time in bed or must suddenly take to bed in spite of plans to be with others. The Dharma places a very high value on community, which is called
sangha
. The word originally referred to the disciples of the Buddha. It then evolved to include Buddhist monks and nuns. Today,
sangha
refers to the entire spiritual community that supports a practitioner on the path to enlightenment or awakening. Many Buddhists say that sangha is the single most important support on their spiritual path. They speak of taking refuge in sangha
.
Readers of any faith will appreciate the value of sangha—of community—in spiritual life.
sangha
. The word originally referred to the disciples of the Buddha. It then evolved to include Buddhist monks and nuns. Today,
sangha
refers to the entire spiritual community that supports a practitioner on the path to enlightenment or awakening. Many Buddhists say that sangha is the single most important support on their spiritual path. They speak of taking refuge in sangha
.
Readers of any faith will appreciate the value of sangha—of community—in spiritual life.
Before I got sick, I was active in several Buddhist sanghas
.
I co-hosted a weekly meditation group with Tony. We used a local meeting hall every Monday night. At least once a month, I would lead the sitting and then give a talk. We also hosted a monthly group at our house in which we discussed Dharma readings that Tony or I chose and distributed each month. The readings were the starting point for a spirited and often humorous two hours of reviewing our lives since we last met. This was sangha at its richest for me. Tony still hosts this group at our house.
.
I co-hosted a weekly meditation group with Tony. We used a local meeting hall every Monday night. At least once a month, I would lead the sitting and then give a talk. We also hosted a monthly group at our house in which we discussed Dharma readings that Tony or I chose and distributed each month. The readings were the starting point for a spirited and often humorous two hours of reviewing our lives since we last met. This was sangha at its richest for me. Tony still hosts this group at our house.
We also frequently went to daylong meditation retreats led by teachers, not just from Northern California, but from all around the world. And, twice a year, I attended a ten-day silent meditation retreat, led by many of the teachers I mention in this book. When I got sick, I could no longer participate in these activities, even though the meeting hall is three blocks away and the monthly group is a room away—although if I sit off to the side and mostly listen, I’m sometimes able to join the monthly group for a half-hour. In addition to losing this precious source of spiritual support, I had to adjust to the social isolation that accompanied the illness like night follows day.
“It’s hard to distinguish between the effects of my illness and the effects of isolation,” wrote a member of an online support group for people diagnosed with an illness similar to mine. I, too, have days when the isolation feels like the illness itself. People who are house-bound are not just isolated from one-on-one personal contacts. We are often isolated from nature and even from the warm feel of a friendly crowd. Our best bet to see the changing seasons is on the drive to and from a doctor’s appointment, but this is often a stress-filled outing. Similarly, our best bet to be in a crowd is in the waiting room at the doctor’s office—not the most comfortable or uplifting of settings. I recently read a blog entry from a woman with chronic fatigue syndrome in which she said she went to get a blood test a week early just to be around people.
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