Authors: Toni Bernhard,Sylvia Boorstein

How to Be Sick (4 page)

BOOK: How to Be Sick

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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? et 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.