How to Be Sick - Selections
Chapter 2: Staying Sick: This Can’t Be Happening to Me
You can argue with the way things are. You’ll lose, but only I00% of the time.
A week after returning, I had a relapse. Then once again, I seemed to get better except, strangely, my voice didn’t return. This new whisper of a voice was troublesome because, as a professor, I made my living by talking. With the law school semester starting at the end of August, I talked to the dean in early July about my concerns, but he was conﬁdent I’d be ﬁne by then.
We agreed not to worry.
Feeling stronger and stronger, in mid-July, I went ahead with plans to go on a ten-day meditation retreat at Spirit Rock Meditation Center, in Marin County, north of San Francisco, about two hours from my home. This was a treasured annual retreat for Buddhist practitioners on the West Coast because the two principal teachers—Joseph Goldstein and Sharon Salzberg—had, along with Jack Kornﬁeld, brought vipassana meditation to the United States after intensive training by teachers in Thailand, Burma, and India. They founded the Insight Meditation Society (IMS) in Barre, Massachusetts, which instantly became a mecca for Americans who wanted to learn to meditate. Some years later, Jack moved to California and, along with other vipassana teachers, founded Spirit Rock. Once a year, Joseph and Sharon, along with other IMS teachers, led a ten-day retreat at Spirit Rock, a retreat so popular that one could only get in through a lottery system. Except for my whisper of a voice, I appeared to be over what my doctor now humorously called “the Parisian Flu.” And, besides, one doesn’t need a voice on a silent retreat. This year, Carol Wilson, Kamala Masters, and Steve Armstrong—all wonderful meditation teachers—accompanied Joseph and Sharon. I thought, “Lucky, lucky me.”
It was during this retreat that the Parisian Flu turned from acute to chronic. Eerily, I have it documented, although at the time I didn’t know I was describing symptoms that would still be with me years and years later. I’d taken a notebook with me to jot down tidbits from the teachers’ talks. It was not intended to be a daily diary, but what was happening to me was too curious not to keep track of. On Monday morning (the third day of the retreat), I wrote, “Woke up feeling sick. Am worried is same stuff again. Determined to stay here even if can only go to Dharma talks.”
That night, I wrote, “Feel as if I’m in a stupor. Have this humming, angry pulsating feeling in the body as if I’ve been up for several nights, not like any other illness I’ve ever had.”
On Tuesday, I wrote, “Deﬁnitely sick. What’s going on? Very confused.”
Determined to stay at the retreat, at one point I wrote, “If one is to be sick and alone, this is as good a place as any.” But aside from attending a few talks (there was one each evening) and going to the eating hall once a day for lunch because wiping down the tables afterward was my work meditation, I stayed in my room.
Since the residence halls are up a steep hill from the eating hall, I wrote, “Coming up the hill, I feel like I’m coming up the stairs in the Métro. The ﬂashback is vivid.”
Although I felt too sick to sit up and meditate, I tried to follow a basic meditation instruction: Watch the mind. “Worry is arising,” I wrote. A neutral, nonattached observation of fact. But I couldn’t maintain that meditative perspective for long and so “Worry is arising” was soon followed by an outpouring of troubled thoughts and questions: “Did they read a blood test wrong? . . . I would like to absorb into TV . . . In my room and sad, second-guessing if I should go home to see the doctor. So sad. So sad, especially since I now know the joy of being well.”
I didn’t go back to work at the end of August in 2001. The dean found someone to cover my classes. I also didn’t get to spend time with my new granddaughter, Malia, whose ﬁrst year of life was going by fast. That fall, my life was spent in bed or at a doctor’s ofﬁce. I entered the phase of the illness in which we needed to rule out every cause that could show up in blood tests, CT scans, MRIs, and other procedures, some of which were completely foreign to me (such as the painful but fascinating appointment where a technician made a videotape of my voice box to be examined for abnormalities).
I had so much blood drawn that we joked with my primary care doctor that at least we’d proven that blood-letting didn’t appear to be a cure. I was referred to half a dozen specialists. All I could tell them was that I had ﬂu-like symptoms without the fever; an extremely hoarse voice; eighteen pounds of weight loss; and a fatigue so devastating that, no matter how small the waiting-room chair, I tried to turn it into a bed.
In the end, I saw three infectious disease doctors, two ENT specialists, a rheumatologist, an endocrinologist, a gastroenterologist, a neurologist, a cardiologist, and (on my own) two acupuncturists.
Each ran his or her own battery of tests. Even though I was never referred to an oncologist, I still found myself at a cancer center because the endocrinologist wanted to test my adrenal function using an infusion test that could only be performed at the clinic where cancer patients received chemotherapy. I met some brave people that day.
The testing and physical exams indicated that nothing was wrong with me. So in the spring of 2002, I dragged myself back to the law school twice a week to teach a class that met for ninety minutes each session. I went back to work mainly because I simply could not and would not believe I wasn’t going to get better. Everyone I saw at work assumed I’d ﬁnally recovered. After all, I didn’t look sick to them. They would stop me in the hall to chat, seemingly unaware that I was leaning against the wall to keep from falling over.
I continued to work part-time for two and a half years, sometimes going to the law school twice a week, sometimes three times a week, depending on the class schedule. Even though Tony worked in another town, he tried to arrange his schedule so he could drive me the ten minutes from our house to the law school and pick me up after my class. I was too sick to drive myself ten minutes to work, yet I’d teach a class that sometimes lasted an hour and a half.
It’s easy to look back and see what a mistake it was to continue working while sick—it probably worsened my condition—but many people who have contracted a chronic illness have done the same. First, there’s the ﬁnancial need to keep working. Second, there’s the utter disbelief that this is happening to you (reinforced by people telling you that you look just ﬁne—people who don’t see you collapse on the bed as soon as you get home). Each morning, you expect to wake up not feeling sick even though for weeks and then months—and then years—that has never been the case.
It’s just so hard to, ﬁrst, truly recognize that you’re chronically ill and, second, to accept that this illness is going to require you to change your plans for life in ways you never imagined, not the least of which is giving up the profession you loved and worked so hard to build.
I had to come up with secret coping mechanisms to make it through my part-time workday. For the ﬁrst time in twenty years, I took a chair into the classroom and taught while sitting down. The noise made by lively chatting students, as many as eighty at a time, was so jarring to my sick body that I wore ear plugs as I entered the room, then discretely removed them as the students quieted down for me to begin talking. I concocted a method to keep students from coming to my ofﬁce because, once I was in there with them, I lost the ability to control the length of the interaction. If someone approached me after class and another class was following mine in the same room, I’d ﬁnd an empty classroom and sit down there with the student. That way, when I felt I’d answered his or her questions, I could stand up and end the conversation.
I even had a secret coping technique I didn’t tell Tony about because it felt too deviant. My ofﬁce wasn’t close to a bathroom. Not only was I too sick to walk to the bathroom on the other side of the building, but doing so would risk running into colleagues who might (with the best of intentions) want to engage me in conversation while standing in the hallway. Avoiding those encounters was among my highest priorities. So I found an old thermos and took it to my ofﬁce. I peed into it, screwed the lid on tightly, put it in my bag, and took it home to empty and wash out.
Those who have no choice but to go to work while sick all have such secret coping mechanisms. At ﬁrst, I felt humiliated having to use subterfuges and to undergo such indignity just to relieve myself. I blamed myself for my life having brought me to this sorry state. After a while, the self-loathing shifted to a deﬁant but ugly cynicism: healthy people be damned; this is what I’m doing, so shove it if you don’t approve. Fortunately, the cynicism gave way to compassion for myself. If nothing else, peeing into a thermos was no easy feat: I was professionally dressed for class, pantyhose and all.
I never told the students I was sick (although some of them ﬁgured it out). However, being sick, I was unable to be anyone other than my unadorned self in the classroom. It became easy to admit that I didn’t have all the answers, and I felt a new compassion both for people caught up in the legal system and for students facing struggles in their own lives. Sitting in a chair, speaking in such a weak voice that students sometimes had to ask me to repeat myself, I received the highest teaching evaluations in my twenty years on the job. And yet, I had to let it all go. When you are as chronically ill as I am, you have to make some very hard choices. Ironically, people may think you’re giving up, when in fact you are simply giving in to the reality of your new life.
For me, that reality meant having the symptoms that accompany a severe ﬂu, including the dazed sick feeling and low-grade headache, but without the fever, the sore throat, and the cough. To imagine it, multiply the extreme fatigue of a ﬂu by an order of magnitude. Add in a heart pounding with the kind of wired, oppressive fatigue that healthy people associate with severe jet lag, making it hard to concentrate or even watch TV—let alone to nap or even sleep at night.
Part of the reality of chronic debilitating illness is continually trying to ﬁgure out why you are so sick—and never getting a deﬁnitive answer. If being labeled with an acronym could cure me, I’d be in great shape. Since getting sick in Paris, I’ve been diagnosed with a laundry list of diseases and conditions: CFS (aka CFIDS, ME), PVS, VICD, OI, and POTS. (If you’d like to know what these letters and various diagnoses mean, see the box on pages 15–17.)
In the end, though, all we really know is this: I got sick on a trip to Paris and I never got well. But I also began a journey into the depths of the Buddha’s teaching. I needed to learn how to be sick.
How do you name my illness? Let me count the ways.
Chronic Fatigue Syndrome. “CFS is a ‘garbage pail’ diagnosis,” an infectious disease specialist told Tony and me. He said doctors use it when it’s clear that a patient is sick but standard medical tests have failed to pinpoint the cause. CFS has become the default diagnosis given to me. It’s what doctors write down on forms. (The medical slang “garbage pail” is rejected by all the major CFS experts whose tireless efforts to solve the mystery of symptoms that have been collectively labeled “CFS” have given hope to millions saddled with this diagnosis.)
Chronic Fatigue and Immune Dysfunction Syndrome. CFIDS is an alternative name given to CFS, partially in an attempt to have it taken seriously and partially because a subset of CFS patients appear to have an overactive immune system that produces ﬂu-like symptoms as the body remains in a perpetual state of “sickness response.”
Myalgic Encephomyalitis. ME is the name given to CFS in almost every country but the United States. Its literal translation would be “muscle pain and brain inﬂammation,” but it’s as non-descriptive of what sufferers experience as is the phrase Chronic Fatigue Syndrome—although being diagnosed with ME avoids being simplistically labeled as someone who is just complaining about being tired. CFS, CFIDS, and ME are synonymous and purport to describe the same illness. But I’ve met dozens of people on the Internet who have been given one of these diagnoses and none of us have identical symptoms. Some have chronic sore throats and swollen lymph glands. Others (like me) do not, but suffer from an unremitting ﬂu-like malaise. Some experience cognitive impairment, including difﬁculty processing information, forgetfulness, and an inability to form sentences properly. Others (like me) do not, except to the extent that the ﬂu-like symptoms make it hard to concentrate. Some suffer from muscle and joint pain. Others (like me) do not. The only symptom that those with this diagnosis share is “fatigue” (which is a feature of almost every illness, from the common cold to cancer). And even this symptom ranges from a fatigue that sets in only after a person is active, to an ever-present bone-crushing fatigue that prevents a person from ever straying far from the bed. I’m convinced that CFS encompasses several discrete illnesses and that until the general medical community recognizes this, little progress will be made in ﬁnding a cause or a cure.
Post-Viral Syndrome. A few decades ago, the Centers for Disease Control (the CDC) rejected the name PVS in favor of CFS. Some doctors still use the name Post-Viral Syndrome and did so with me, especially in the ﬁrst two years following the “Parisian Flu.”
Viral Induced Central Nervous System Dysfunction. VICD is a fairly recent designation, used to describe a subset of CFS patients whose blood work indicates there may be a reactivation of herpes viruses that usually lay dormant in the body after their acute childhood phases. My blood work suggests that I ﬁt this subset, although antivirals haven’t helped me. The theory is that an acute infection—in my case, the “Parisian Flu”—triggers a reactivation of the viruses, causing the immune system to become engaged in a constant low-grade war against them.
Orthostatic Intolerance and Postural Tachycardia Syndrome. These two diagnoses refer to poor blood circulation, which makes it difﬁcult to maintain a standing position. They are thought to be results of whatever is wrong with me as opposed to the cause.
Chapter 4: The Universal Law of Impermanence
Better a single day of life
seeing the reality of arising and passing away
than a hundred years of eXistence remaining blind to it.
Ending dukkha in the mind includes understanding what the Buddha called the “three marks of existence.” We have already been discussing the ﬁrst mark: the fact of dukkha in our lives. The other two are impermanence (anicca) and no-self (anatta). When the Buddha began explaining these characteristics of our existence, he began with impermanence. It is a universal law, recognized in other spiritual traditions and in science as common to the life of every living being.
At a Spirit Rock retreat in the late 1990s, Joseph Goldstein gave what has come to be my favorite description of anicca as I experience it in everyday life: “Anything can happen at any time.”
Initially, I reacted to his statement the same way I reacted when I ﬁrst heard anicca translated from the Pali as “Everything is impermanent.” I thought, “Yeah, tell me something I don’t know.” But when I didn’t recover my health, I began to deeply contemplate the meaning of “anything can happen at any time”—like getting sick and not getting better, like having to give up my profession, like rarely being able to leave the house. Yes, anything can happen at any time. Life is impermanent, uncertain, unpredictable, everchanging.
How are we to ﬁnd any solace in this universal law? The great Zen master Dogen offers a clue:
Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrance all over the universe?
When we begin to see the truth of anicca, there’s a tendency to focus on “the bitterest cold that penetrates to the very bone” phrase in Dogen’s words. Having had to give up my profession still feels like that on some days. The challenge becomes ﬁnding the fragrance sent forth by those plum blossoms. Without the bitter cold of giving up my profession, I wouldn’t have the fragrance of Mozart and Beethoven wafting through my bedroom. (Of course, I could have enjoyed that fragrance before I got sick, but the fact is, I didn’t.) Without the bitter cold of having to stay in bed most of the day, I wouldn’t be so attuned to the changing seasons; I never realized they are on view right outside my bedroom window. I return to Dogen’s verse over and over for inspiration.
The writings of the Vietnamese Zen master Thich Nhat Hanh have also helped me see the beauty inherent in the fact of impermanence. In his biography of the Buddha, Old Path White Clouds, Thich Nhat Hanh points out that impermanence is the very condition necessary for life. Without it, nothing could grow or develop. A grain of rice could not grow into a rice plant; a child could not grow into an adult. There are so many ways in which I’ve “grown” only because of this illness, from my newfound love of classical music, to a heightened compassion for the chronically ill and their caregivers, to an appreciation for the hard-working people who go unnoticed but keep our infrastructure running. (I see them from my house—delivering mail, climbing power poles, cleaning the streets—whether it’s over 100 degrees out or pouring rain.)
Buddhist teachers use any number of English words to translate anicca: impermanence, change, unpredictability, uncertainty. All are characteristics common to existence—animate and inanimate. Two of those words, uncertainty and unpredictability, can be a source of a great deal of anxiety and suffering for us because we desire just the opposite: security and assurance. Here, I offer a practice that addresses these two aspects of impermanence. I call it “weather practice”; it was inspired by, of all things, the 2005 movie The Weather Man, starring Nicolas Cage as a character named Dave Spritz.
Dave is adrift in life, even though he has a steady job as the weatherman for a Chicago TV station. In reality, he’s just a “weather reader,” dependent on a meteorologist to tell him what to say. When the meteorologist gives him a forecast with an eighteen-degree variance, Dave complains that he needs something more concrete. The meteorologist responds, “Dave, it’s random. We do our best.” One day the meteorologist preps Dave for his TV spot by saying, “We might see some snow, but it might shift south and miss us.”When Dave protests that the viewers will want a more certain forecast than that, the meteorologist tells him that predicting the weather is a guess. “It’s wind, man,” he says. “It blows all over the place.”
I found this inspiring and very useful. When life’s uncertainty and unpredictability throw me for a loop, I like to say to Tony:
“Here it is again, life and the weather. Just wind, man, blowing all over the place.” Then returning to the verse from Dogen, I remind myself that the wind that’s blowing the bitterest cold at me may be setting the stage for something joyful to follow.
I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can’t control what thoughts arise in the mind. (Telling yourself not to think about whether you’ll feel well enough to join the family for dinner is almost a guarantee that it’s exactly what you will think about!) And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they’ll blow on through soon—after all, that’s what they do.
One night, I felt so sick I wanted to throw out all the work I’d done on this book. Dark thoughts. A blue mood. My eyes welled up with tears. But instead of those tears turning into sobs, I took a deep breath and began the weather practice, remembering that thoughts and moods blow all over the place and that if I just waited, these particular ones would blow on through. And they did.
When it became clear that the Parisian Flu had settled into a chronic illness, Tony and I began to consider if it was feasible for him to go on a retreat for an entire month during which he’d be out of contact with me unless I called with an emergency. I badly wanted him to go because I saw it as a way I could feel like a caregiver for him. He went for the ﬁrst time in 2005 and each February thereafter. The retreat became a major annual event for him. The preparations he made ahead of time were like those that people make who are in the path of a coming hurricane. He brought a month of supplies into the house. He ﬁlled the freezer with food he’d cooked ahead of time. He set up people in town for me to contact if I needed help. My promise to him was to be extra careful in everything I did and to call him home if I needed him.
The forecast inside our house for February 2009 called for calm weather despite my illness. But at 9:00 A.M., two days after Tony left, things changed in a split second. One moment I was at the top of the two steps that lead down to our bedroom—the next moment I was writhing in pain on the bedroom ﬂoor, having slipped down the steps and landed on my right ankle.
When the pain began to subside, I pulled myself up on the bed and went straight to my laptop to research the only question on my mind: Was I going to have to go to the doctor? Medical appointments can be an ordeal for the chronically ill—the roundtrip drive, the possibility of a long wait, the energy it takes to effectively communicate with the doctor. It’s so much easier to have a caregiver along. When I go to the doctor, Tony drives me, stands in line to check in for me, and accompanies me to the examining room. I never schedule medical appointments during February.
Despite the rapidly increasing swelling and discoloration on my ankle, my Internet research convinced me that I only needed to go to the doctor if I still couldn’t put weight on it in twenty-four hours. So I waited. And when I needed to go somewhere off the bed, I crawled. Our dog, Rusty, was delighted to see this. He acted like I’d ﬁnally seen the light and was joining his species. This appeared to be a cause for great celebration on his part, so my challenge became to make sure that in his exuberance he didn’t step on my right foot.
That ﬁrst day, as I lay in pain on the bed, I thought of the meteorologist’s comment to Dave the weather reader: “Dave, it’s random. We do our best.” Tony and I had indeed done our best to prepare for a calm February, but as we all discover again and again anything can happen at any time. We can take precautions, but predicting the future is as futile as predicting which way the wind will blow.
The next morning, when I still couldn’t put weight on my right foot, our friend Richard took me to the doctor. Diagnosis: fractured ﬁbula. The forecast: No weight bearing on it for several weeks; a cast so heavy that it took all my energy to move my leg; crutches and crawling to get around. I toughed it out for one more day. Even with people offering to help, the injury on top of the illness proved to be too much. One or the other I could have handled alone, but not both. I knew I needed to call Tony home when, before going to sleep for the night, it took me ten minutes to make the roundtrip to a bathroom that’s only footsteps from the bed. As I lay back on the bed in exhaustion, I realized that the light over the bathroom sink was still on—a light that shines right in my eyes. I had no choice but to start the process of getting to the bathroom all over again.
So Tony came home four days into his treasured month-long retreat and, for a month, traded his caregiver role for that of nursemaid. Life and the weather—one moment it’s calm and the next moment a nasty storm has blown in.
Weather practice is a powerful reminder of the ﬂeeting nature of experience, how each moment arises and passes as quickly as a weather pattern. A week after I fell, I went to see an orthopedic surgeon. My regular doctor arranged the consult in case I needed surgery to insert a plate and pins. A resident came in the examining room ﬁrst. Looking at the x-rays, he said that, given the nature of the break and the damage to the ligaments, I might very well need surgery to stabilize the area. He left the room to report his ﬁndings to the orthopedic surgeon—and dark storm clouds gathered as Tony and I contemplated the effect on my illness if I had to go through surgery. Expecting heavy rain to accompany the surgeon into the room, he walked in and immediately said, “Surgery? No, no, no! The area is stable. You just need to stay off the ankle as long as it hurts and get physical therapy to regain your range of motion.” In a ﬂash, the sun had burst through the clouds. Tony and I were elated.
But a half-hour later, as I lay on the bed trying to nap, a cold dense fog settled in as I thought, “What does it matter that the surgeon gave us such good news. Even when I can walk normally again, I’ll still be sick and bed-bound most of the day and Tony, despite all this extra care he’s giving me, still won’t have my company out there in the world.” In a little over an hour, I’d experienced dark storm clouds, the threat of rain, the sun bursting through instead, and now a cold dense fog. Recognizing the ﬂeeting nature of each moment, I was able to smile and the ﬁnal verse of the Diamond Sutra came to mind:
Thus shall you think of all this ﬂeeting world:
A star at dawn, a bubble in a stream;
A ﬂash of lightning in a summer cloud,
A ﬂickering lamp, a phantom, and a dream.
I knew it wouldn’t be long before the sun would burn off that cold dense fog and I’d smell the fragrance of Dogen’s plum blossoms.
Finally, to help me live gracefully with the truth of uncertainty and unpredictability, I follow what I call “broken-glass practice.” This practice was inspired by a passage in Food for the Heart, a collection of the teachings of the Thai Buddhist monk Ajahn Chah. He trained many Westerners at his remote forest monastery and has had a strong inﬂuence on the shape that Buddhism of south Asia has taken in the West. As we shall see in more detail later, he offers powerful teachings on equanimity, which is often described as the ability to weather life’s ups and downs with a calm and even-tempered mind.
Here is Ajahn Chah talking about a glass:
You say,“Don’t break my glass!” Can you prevent something that’s breakable from breaking? It will break sooner or later. If you don’t break it, someone else will. If someone else doesn’t break it, one of the chickens will! ... Penetrating the truth of these things, [we see] that this glass is already broken. ... He saw the broken glass within the unbroken one. Whenever you use this glass, you should reﬂect that it’s already broken. Whenever its time is up, it will break. Use the glass, look after it, until the day when it slips out of your hand and shatters. No problem. Why not? Because you saw its brokenness before it broke!
I use broken-glass practice all the time. The Buddha taught that all that arises is subject to change, decay, and dissolution. So when Tony or I break something, or the power goes off, or the phone line goes dead because the neighborhood squirrels have been chewing on the wires again, we try to laugh and say, “Ah, it was already broken.”
As a metaphor, broken-glass practice has helped me accept one of the consequences of being sick that my online wanderings tell me would show up on the “top ten most difﬁcult adjustments” list of anyone who is chronically ill: The very activities that bring us the greatest joy are also the activities that make our condition worse. This was a bitter pill for me to swallow; it still is sometimes.
These activities include everything from holiday dinners to special events, such as weddings. Having to sit upright for extended periods, trying to focus on a conversation while the room is full of noise, not feeling we can leave (or not having the means to leave) even though our bodies are crying out for us to lie down, are but a few of the features of these activities that exacerbate the symptoms of the chronically ill. Even people who are in good health ﬁnd these gatherings to be exhausting and may need a day or two to recover, so it’s not surprising that they can have such a devastating effect on those who are already sick.
At the end of this book is a guide that lists several practices that can help us adjust to this most difﬁcult aspect of impermanence— this unexpected change to our lives that suddenly keeps us from participating in activities that we had counted among our greatest joys. Broken-glass practice can be particularly helpful here. I ﬁnd comfort in contemplating that my ability to participate in these activities was already broken, in the sense that this change in my life will befall everyone at some point and quite possibly by surprise. This is simply how and when it happened to me.
Then I reﬂect on impermanence—the fact that every aspect of my life is uncertain, unpredictable, and in constant ﬂux. Finally, like Ajahn Chah, I look after each moment, cherishing what I still can do, aware that everything could change in an instant.
How to cite this document:
© Toni Bernhard, How to Be Sick (Wisdom Publications, 2010)
This selection from How to Be Sick by Toni Bernhard is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
Based on a work at http://www.wisdompubs.org/book/how-be-sick.
Permissions beyond the scope of this license may be available at http://www.wisdompubs.org/terms-use.