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 teachers’ 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 at which 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 bloodletting 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 ear, nose, and throat 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 my medical provider’s 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.
All the tests 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 are chronically ill 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 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, 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 career 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 discreetly 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 in doing so I risked 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 chronically ill all have 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 know the answer to a question. I spoke in such a weak voice that students sometimes had to ask me to repeat myself. This experience gave me a new compassion both for people caught up in the legal system and for students facing struggles in their personal lives.
Even as I sat in a chair, even as I felt myself struggle, I received the highest teaching evaluations in my twenty years on the job. And yet I couldn’t sustain the effort. When you are as sick as I am, you have to make some very tough choices. I had to let it all go. 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 the aches and pains, but without the fever, the sore throat, or the cough. To imagine it, multiply the fatigue and the aches and pains of the flu by an order of magnitude. Add in a heart that’s constantly 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 nap or sleep at night.
Part of the reality for many who suffer from chronic debilitating illnesses is the continuing quest to try to figure out why we are so sick and in pain — 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, ME/CFS), PVS, VICD, OI, POTS, PEM, and SEID. (If you’d like to know what these letters and various diagnoses mean, see the box below.)
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 the name of my diagnosis that most people are familiar with. Unfortunately, it’s terribly misleading and trivializes a serious disease. First, what illness isn’t fatiguing? What day isn’t fatiguing? Second, take my word for it, the word fatigue doesn’t begin to describe how I feel every day. When people are given this diagnosis, it’s not uncommon for family, friends, and even the medical community to dismiss the sufferer as being nothing more than tired.
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 (including me) appear to have an overactive immune system that produces flu-like symptoms due to the body remaining in a perpetual state of “sickness response.”
Myalgic Encephalomyelitis. Myalgic encephalomyelitis (ME) is the name given to this illness in almost every country except the United States, Canada, and Australia. Myalgic encephalomyelitis has become the preferred name among most patient advocates; in the United States, there’s been some progress in getting the name changed from CFS to ME. Throughout the book, I’ll refer to the illness as ME/CFS because that’s the most common designation as of this writing.
Post-Viral Syndrome. A few decades ago the Centers for Disease Control (CDC) rejected the name PVS in favor of CFS. Some doctors still use the name 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 ME/CFS patients whose blood work indicates there may be a reactivation of herpes viruses that usually lie dormant in the body after their acute childhood phases. My bloodwork 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/CFS sufferers as opposed to the cause.
Post-Exertional Malaise. One characteristic of ME/CFS is its great range of symptoms. I’ve met dozens of people on the Internet who have been diagnosed with ME/CFS, and none of us have all the same 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 flu-like symptoms make it hard to concentrate. Some (like me) suffer from muscle and joint pain. Others do not. The only symptom that everyone with this diagnosis shares is post-exertional malaise (PEM). This refers to an exacerbation of symptoms following either physical or mental activity even though these activities were easily tolerated before the onset of the illness. PEM can cause a person to become bedbound for days or for weeks.
Systemic Exertion Intolerance Disease. In 2014, the United States Department of Health and Human Services, along with the CDC, the Food and Drug Administration, and several other agencies, asked the Institute of Medicine (IOM, now called the National Academy of Medicine) to appoint a committee of experts to examine the evidence base for ME/CFS. The IOM committee concluded that ME/CFS is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients. The committee recommended that the name be changed to systemic exertion intolerance disease (SEID) because that designation best describes the one symptom that all sufferers have in common: PEM. So far, the name SEID has not caught on.
I’m convinced, as are many experts, that ME/CFS represents several discrete illnesses. It’s disheartening and unacceptable that the government allocates so little research funding to study this illness. Until this changes, little progress will be made in finding a cause or a cure. It remains a tragedy for millions of people and their families.
Pain Is Part of Life
3
The Buddha Tells It Like It Is
To go into the dark with a light is to know the light. To know the dark, go dark. Go without sight and find that the dark, too, blooms and sings, and is traveled by dark feet and dark wings.
— WENDELL BERRY
AFTER A LONG journey of discovery, with many ups and downs, the Buddha, an ordinary human being like you and me, sat down under a tree and stayed there until he attained enlightenment — also known as liberation, freedom, or awakening. At first he wasn’t sure if he could find the words to share his experience, but eventually he gave his first teaching in the form of what is known as the Four Noble Truths. Buddhism — what Buddhists call the Dharma, which means “teachings” — was born.
The Buddha’s List
Many people will tell you they know the first noble truth, but their usual rendering, “Life is suffering,” is responsible for a lot of misunderstanding about what the Buddha taught. In offering us the first noble truth, the Buddha was not making a negative pronouncement. He was describing the conditions of life that are shared by all human beings. He presented them as a list of experiences that all of us, including the Buddha, can expect to encounter at one time or another during our lifetimes: birth, aging, illness, death, sorrow, pain, grief, getting what we don’t want, not getting what we want, and losing what we cherish.
Notice that illness is on the list, meaning that it’s a natural part of the human life cycle. How many people think of illness as natural? I hadn’t — until I encountered the Buddha’s list.
What all the items have in common is that none of them are pleasant experiences; indeed, they are often mentally painful or physically painful. It’s a daunting list, that’s for sure. No wonder people sometimes say that Buddhism is pessimistic. It’s not to me, though. The Buddha was simply being realistic and honest about the human condition. Since all of us will face these experiences at one time or another during our lives, I appreciate that the Buddha was upfront about them so I can start, right now, learning to respond wisely when they occur.
As I understand the Buddha’s intent, he began his teachings with these unpleasant and often painful experiences because we spend so much time in a fruitless effort to deny their presence or to try to make them go away. It is this relentless effort to escape what we cannot escape and to change what we cannot change that leads us to be dissatisfied with our lives.
The word the Buddha used to describe this dissatisfaction is dukkha. It comes from Pali, the language in which the Buddha’s teachings were first recorded.
Dukkha is too multifaceted and nuanced a term to be captured in its usual one-word translation, “suffering.” To capture the essence of what the Buddha meant by the presence of dukkha in our lives, it’s helpful to keep other possible translations of this key word in mind: unsatisfactoriness (that is, dissatisfaction with the circumstances of our lives), anguish, stress, discomfort, unease, to name a few. Dukkha is
a term worth becoming familiar with, especially when exploring how to be sick.
When I first encountered the various translations for dukkha, they resonated powerfully for me. Finally, someone was describing this life in a way that fit a good portion of my experience, both physical and mental: stress, discomfort, unsatisfactoriness. What a relief to know it wasn’t just me and wasn’t just my life!
The feeling that the Buddha understood the difficulties I faced allowed me to start the day-to-day work of making peace with the realization that unpleasant and painful experiences are part of the human condition, and that we create dukkha — suffering, stress, anguish — when we resist this. Even in the darkest early days of the illness, when I didn’t understand what was happening to me (was I dying?), I always had the first noble truth propping me up, telling me, “You know this is the way it is. You were born and so are subject to illness. It happens differently for each person. This is one of the ways it’s happening to you.”
The Buddha didn’t say that life is only made up of the unpleasant experiences on his list. He was simply emphasizing that difficulties are present in the life of all human beings. Years ago, a law student told me that Buddhism was pessimistic. When I asked him why he thought that, he said, “Well, the first noble truth is ‘Life sucks.’” In trying to explain to him why that was not a valid translation of the Buddha’s teaching, a shift occurred in how I thought of the first noble truth.
Yes, it’s true that life brings with it a considerable share of unpleasantness and difficulties, but happiness and joy are available, too. The fourth-century B.C.E. Taoist sage Chuang Tzu referred to this world, this life we’re living right now, as the realm of the ten thousand joys and the ten thousand sorrows. The Buddha began his teachings by focusing on the ten thousand sorrows because our inability to accept them as part of life only makes things harder for us.
How to Be Sick Page 3