How to Be Sick

by Toni Bernhard

  Most of us never learn to do nothing. Part of the reason is that our culture doesn’t value it. I’ve discovered that when I’m doing nothing I feel calm and receptive. Whatever arises at the sense doors, I simply receive it in a relaxed nonreactive manner. And so sounds come and go, sights come and go, physical sensations come and go (or at least change), thoughts come and go, the dog comes and goes.

  Once in a while, thoughts start piling upon thoughts (that discursive thinking from the previous chapter) and I start to get lost in some well-worn narrative about my life. As soon as I become aware that this is happening, I remind myself that right now I’m doing nothing. Usually the thoughts take the hint and make a hasty exit. If they don’t, I treat them as meaningless chatter in the mind.

  This practice is relaxing, restorative, and feels good. I hope you’ll try it.

  Finding the Middle Ground

  Can we live a good and fulfilling life when our activities are so severely curtailed? Can we act to reduce suffering, even though chronic illness has imposed limitations on us?

  I’ve discovered that wise action lies in finding the middle ground between what we used to be able to do and the alternative of giving up on almost all activity out of fear of worsening our symptoms or out of anger over our perceived misfortune. The challenge is to find the balance between too much and too little.

  In A Still Forest Pool, Ajahn Chah talks about his teaching method. I use his discourse as a guide for determining what is wise action, given my limitations:

  It’s as though I see people walking down a road I know well. To them the way may be unclear. I look up and see someone about to fall into a ditch on the right-hand side of the road, so I call out to him, “Go left, go left!” Similarly, if I see another person about to fall into a ditch on the left, I call out, “Go right, go right!” That is the extent of my teaching. Whatever extreme you get attached to, I say, “Let go of that too.” Let go to the left, let go to the right. Come back to the center, and you will arrive at the true Dharma.

  The key to wise action for the chronically ill, then, is to avoid extremes. If we veer too far to the one side and act as if we have the stamina and physical abilities we used to have, we risk overexertion that could land us in bed for days. But if we veer too far to the other side and avoid all activities and all contact with people, we risk missing out on experiences that can give us an emotional lift; even worse, we risk falling into despair. Either extreme increases our suffering (and that of our caregivers) and so is not wise action. The challenge is to find that middle ground.

  One Thing at a Time

  A valuable guideline for wise action comes from the Korean Zen master Seung Sahn: “When reading, only read. When eating, only eat. When thinking, only think.”

  I look upon this as a caution about multitasking. Doing one thing at a time is particularly good advice for the chronically ill whose symptoms are exacerbated if there’s too much sensory input. It takes discipline to break our ingrained habit of multitasking. Mindfulness practice helps because, unless we consciously pay attention to the present moment, we can find ourselves engaged in multiple tasks without even realizing it.

  One day in July 2015, I put my relationship to multitasking to the ultimate test . . . and failed miserably. Innocently enough, I turned on my TV to watch a tennis match I’d recorded of Serena Williams playing at Wimbledon. Tennis fans everywhere were keeping track of Serena’s matches at Wimbledon because, if she won the tournament, she’d have the distinction of holding all four major titles at the same time, a significant achievement in the tennis world.

  No one thought Serena’s opponent had a chance against her, that is until the young Brit, Heather Watson, won the second set and was ahead in the third — and deciding — set. Suddenly this was the match to watch. It’s the kind of thrilling match we tennis fans wait for. I don’t even care who wins. I just like the excitement of a close and well-played match.

  This was the perfect setup for me to have a good time.

  But I didn’t. Why? Well, I had an article I’d been working on for several weeks. Even though there was no deadline for me to finish it, and even though I’d turned on the TV specifically to watch this match, I picked up a hard copy of the piece and started editing it. When I finished an editing pass — with the TV still on — I entered my written changes into my computer, printed the piece out again, and made another editing pass.

  Of course, unless one possesses superpowers, it’s impossible to simultaneously be looking at the TV and the work in front of you. So what did I do? It’s embarrassing to admit, but here goes.

  As I edited, I listened to the TV commentators call the match. When I heard them shout “Spectacular shot!” or “How did she ever get to that ball?” or “Unbelievable point!” I rewound the recorder and then watched the play they had been so excited about.

  Then I’d let the match continue while I looked back down at my work, struggling both to find my place in the article and to switch my focus back to the subject I was writing about. And, of course, the next time I heard something such as “What a point!” . . . I’d do the same thing.

  Here’s a summary of my experience:

  I did not enjoy the tennis match. I was never able to get into the flow of the match or into the emotional intensity that both players were feeling. In addition, when I rewound to watch those spectacular points, I missed the fun of being surprised, because I knew what was about to happen.

  I did not enjoy the writing. Just as it was hard to get into the flow of the tennis match, it was hard to get into the flow of the writing because, as soon as I’d focus on the content of the piece, I’d have to stop, rewind the recorder so I could watch the “spectacular” point, and then try to find the place on the hard copy where I’d left off. I didn’t enjoy it and, what’s more, it was mentally exhausting.

  It took me twice as long to watch the tennis match. Because of all this pausing and rewinding, it took a long time to get through the match. It’s hard enough with my illness to watch tennis at all (trying to follow the back-and-forth of the ball can be fatiguing); now my little “stop and rewind” routine had dragged the match out for hours.

  I was irritated and cranky. The tennis kept interrupting my writing and the writing kept me from enjoying the tennis. I’d done a great job of making myself miserable!

  I was (to use our household word for it) trashed afterward. When I tried to take my midday nap, my physical symptoms had been so inflamed by this crazy multitasking scheme that I wasn’t able to get my body to calm down and rest; as a result, I felt awful the remainder of that day and the next one, too.

  This experience convinced me more than ever that multitasking rarely mixes well with chronic pain and illness. Sure, some multitasking works fine: eating a snack while reading or watching TV. But when activities require concentration in order to do them well or even enjoy them, I’ve resolved anew: one thing at a time.

  Pacing

  Pacing refers to alternating periods of activity and rest. The idea is to stay within the limits of what our health can handle so as not to exacerbate our symptoms.

  Pacing is the perfect example of combining wise action and wise inaction to improve quality of life for the chronically ill. It’s the single best “treatment” I’ve found, so it’s sad that I’m still struggling to master this skill. First, I have a love-hate relationship with it. On the one hand, I love pacing because it decreases the chances that my symptoms will flare. On the other hand, I hate it because it keeps me from doing everything I want to do.

  Second, I’m much better at pacing when I’m at my best, as opposed to when I’m at my worst. I raise this because failing at pacing is generally considered to be the result of overdoing things when you’re feeling good and then paying for it later, often by being confined to bed for a time. This is called the “push-crash cycle.” I can do that too, but in this complicated relationship I have with pacing, I’m more likely to fail at it by overdoing things when I’m already
feeling lousy. I call this the “crash-crash cycle.” I’ve learned I’m not alone in doing this.

  The reason that some of us tend to ignore pacing when we’re feeling particularly sick or in pain is because being active distracts us from our symptoms; it keeps us from tuning in to how our bodies feel. Of course, eventually, the time comes when our minds take charge and say, “That is enough for now.” Then we give in and rest, but we also have to live with feeling worse due to all that extra activity.

  I hope you’ll give pacing a try. We can work on it together. Here are four suggestions that can help you succeed with this “treatment”:

  Make a schedule. Create a schedule for the day that incorporates rest in between each activity you want or have to do, be it mental or physical. This way you’re dividing your activities into manageable chunks of time. Simply having that schedule in front of you will keep you from deviating from it too much. Without set time frames, you’re likely to lose track of time and keep at an activity much too long. Some people find it helpful to set a timer; when it goes off, they know it’s time to stop whatever they’re doing and rest for a while.

  Do tasks more slowly. Many of us tend to do things quickly. Slowing down is an excellent way to pace. When you catch yourself going faster and faster — perhaps folding the laundry or doing the dishes — consciously tell yourself to slow down. Not only will you save energy but you’re also more likely to enjoy the task.

  Try the 50 percent rule. Decide what you can comfortably do on a given day and then only do 50 percent of it. This is a great pacing strategy because most of us overestimate what we can comfortably do, so the 50 percent rule keeps us safely within our limits. I recommend thinking of that unexpended 50 percent as a gift you’re giving yourself to help you ease the difficulties of living with chronic pain and illness.

  Use three-breath practice to stop yourself when you’re doing too much. When you suspect that you’re overdoing it and ignoring your body’s signals to rest, stop and take three conscious breaths as described in the previous chapter. This switches your attention to your body and enables you to realize that you’ve been doing too much as a way of distracting yourself from unpleasant physical sensations. With this in mind, try reflecting with self-compassion on those sensations: “This is what pain feels like”; “This is what sickness feels like.” Then, instead of resuming that distracting activity, focus on self-care by resting.

  A final word on pacing. Expect the unexpected. No matter how carefully you’ve planned to pace yourself, as John Lennon sang in “Beautiful Boy,” “Life is what happens to you while you’re busy making other plans.” When that happens, don’t blame yourself for getting off course and don’t abandon pacing. Instead, start where you are and try again. Remember the Korean Zen Master Ko Bong’s “Try Mind”? It’s a perfect companion to pacing.

  Caregivers: What to Do and What Not to Do

  Caregivers also find themselves forced to reevaluate wise action (and inaction) in light of this new and unexpected change in their lives. Whether you are the spouse, partner, child, or parent of a chronically ill person, activities away from home that were a source of joy may suddenly be severely curtailed because you have to stay home to help the person in your care. Even at home, your ability to interact and socialize with your loved one may be severely limited by his or her illness. In addition, you may feel overwhelmed by your new responsibilities — both extra physical tasks and the need to provide a new kind of emotional support for the person under your care.

  Under the category of wise inaction, don’t try to be Super Caregiver by forcing yourself to do every single thing you can for your loved one — and always with 100 percent enthusiasm. If you do that, you may burn out fast, and that won’t benefit either one of you. So pace yourself, just like the person in your care should be doing. Schedule time for caregiver inaction, if I may call it that. This could mean going out to lunch with a friend or, if your caregiver duties keep you at home, doing something enjoyable for yourself. I want Tony to take time for caregiver inaction. I think of it as one way I can show my appreciation for everything he does for me.

  Under the category of wise action, I have four suggestions:

  Share with a friend or family member how hard it is for you at times. Confiding in someone who can offer you the kind of emotional support that you’re giving to the person in your care eases your own burden. If you don’t have anyone you can lean on in this way, you’ll find at least a dozen online support groups that are just for caregivers. You might look into these groups even if you have someone in person to talk to, because connecting with other people who share your circumstances can make a tremendous difference in your quality of life. Not only will you realize you’re not alone, but you’ll also feel understood. In addition, you can help each other problem solve when specific issues arise.

  Treat yourself with compassion over this unexpected change in your life. There will be days when you’re not up to the task of caregiving; you may even be resentful. Instead of feeling guilty and judging yourself negatively for what is a natural response to have at times, use one of the self-compassion practices from chapter 8. Now that would be wise action!

  Remember that just because you can’t cure your loved one doesn’t mean you can’t do things that will help him or her feel better. This could mean playing a board game, reading aloud to him or her, or offering a massage. After I’d been sick for a while, I noticed a change in what Tony was delivering to me in bed each night for dinner. All of a sudden, I was receiving a gourmet meal that he’d taken great care to prepare. I didn’t ask him, but I suspect he realized he couldn’t cure this illness (over a dozen doctors couldn’t, so how could he?), but cooking a delicious meal was something he could do to improve my quality of life. And I think it lifts his spirits, too. That meal has become the highlight of my day. I wish with all my heart that everyone had the support I have.

  Take care of your own health. The best way to assure that you can give your loved one the care you want him or her to have is to take positive steps to protect your own health — both your physical and your mental health.

  15

  Zen Helps

  Everything

  Just as it is,

  as it is,

  as is.

  Flowers in bloom.

  Nothing to add.

  — ROBERT AITKEN

  ALTHOUGH I’M NOT a student of Zen Buddhism, I love to read the teachings and commentaries of Zen masters. I’d like to describe three ways in which Zen has helped me live well with chronic illness. Each of these has formed itself into a practice for me.

  First, Zen has a unique ability to shock the mind out of its conventional way of perceiving the world. I can count on Zen to give me a fresh perspective on my own thinking or to take me beyond thinking altogether. Second, Zen teachings help us realize how little we know for certain. Not only does this encourage me to question my lifelong assumptions, but it also serves as a reminder to stop engaging in that fruitless task of trying to predict what will happen next in my illness (and my life). And, oh, is it liberating to be relieved of the burden of having to know everything! Finally, Zen masters often teach by using poetic forms. As this verse from Soen Nakagawa illustrates, the poetry of Zen inspires us to see the world through new eyes:

  All beings are flowers

  blossoming

  in a blossoming universe.

  As a bonus, the Zen way of conveying the Buddha’s teachings — whether by shocking the mind, by pointing to how little we know for certain, or by using poetic language — can often set off a good old-fashioned belly laugh for me, the medicinal effects of which are well documented.

  Shocking the Mind

  Koans are stories or dialogues from the Zen tradition. They are great mind-shockers because they can’t be understood by using conventional thinking skills. The most famous commentator on koans, Mumon (as he is called in Japanese; or in Chinese, Wu-men), said that in investigating Zen, we must “cut off the m
ind road.” The mind road is like a groove we’ve worn into our consciousness. That groove consists of the endless stream of thoughts and stories we repeatedly spin that cloud our ability to experience the world with a fresh mind or, as Shunryu Suzuki famously said, a beginner’s mind.

  Take this koan:

  A monk asked Ummon, “What is Buddha?”

  Ummon replied, “A dried shit-stick.”

  Yes, a dried shit-stick. By way of explanation, I’ll just say we now use toilet paper instead of sticks for this purpose. There are dozens of commentaries on this one koan. In Two Zen Classics, Katsuki Sekida writes this about it:

  The student asks seriously, “What is Buddha?” Perhaps he is imagining the glorious image of the Buddha pervading the whole universe. The answer comes like a blow to smash such an image. This kind of answer is called “breaking the thinking stream of consciousness.”

  Sekida’s reference to the Buddha as a shit-stick smashing our glorious image of him cuts our mind road right off. It takes us out of our conventional way of thinking into a fresh awareness of the way things are. Because a shit-stick brings to mind something permeated with bacteria and viruses, I interpret this koan as meaning that even my diseased, aching body is a buddha, and so this body itself can be a vehicle for liberation, for freedom, for awakening. In his commentary on this koan, Robert Aitken invokes a similar image. In The Gateless Barrier, he recalls a poem he wrote while a prisoner in a Japanese internment camp during World War II:

  In fermenting night soil

  fat white maggots

  steam with Buddhahood.

  Reading Aitken’s poem, I think of my chronically ill, “fermenting” body, just steaming with Buddhahood. With images of shit-sticks and maggots, Zen shocks my mind into seeing that this diseased body can be a vehicle for awakening.