weathering the relentlessness of symptoms
coming to terms with a more isolated life
coping with emotional distress, especially fear about the future
handling the misunderstanding of others
dealing with the health-care system; and
for spouses, partners, or other caregivers, adapting to so many unexpected and sometimes sudden life changes.
In chapters 1 and 2, I write about how I got sick and, to Tony’s and my own bewilderment, stayed sick. Starting in chapter 3, I describe how, drawing on the teachings of the Buddha, I learned the spiritual practice of “how to be sick,” meaning how to live a life of purpose and joy despite my physical and energetic limitations. I offer simple practices, ranging from those that are traditionally Buddhist to others I devised after becoming chronically ill. I also include a chapter on Byron Katie’s work, which I have found particularly helpful.
You need not be a Buddhist to benefit from the practices in this book. If a suggested practice resonates with you, truly “practice” it. Work with it over and over until it enters your heart, mind, and body and becomes a natural response to the difficulties you face as the result of being chronically ill or being the caregiver of a chronically ill person.
At the end of the book, I’ve provided a quick reference guide that matches specific challenges faced by the chronically ill and their caregivers to practices described in the book.
I put this book together slowly and with great difficulty. I wrote it lying on my bed, laptop on my stomach, notes strewn about on the blanket, printer within arm’s reach. Some days, I would get so involved in a chapter that I’d work too long. The result would be an exacerbation of my symptoms that would leave me unable to write at all for several days or even for weeks.
There were also periods when I was simply too sick or in pain to even think of putting a book together. Then the project would be left untouched for months on end. Feeling so unwell physically would sometimes have such a strong effect on me mentally that, during the darkest moments, I considered tossing out all the work I’d done, despairing of ever being able to complete it.
But painful thoughts and emotions come and go. In the end, I pressed on, determined to finish the book in the hope it would help others. The Buddha’s teachings have inspired and comforted me for many years. The Buddha and the schools that his teachings gave rise to offer many simple yet powerful practices that guide both the healthy and the chronically ill through life’s ups and downs.
The inspiration to write this book came from a person I knew for such a short time and in such limited circumstances that I don’t even know how to spell her name. In 1999, I was on a ten-day silent meditation retreat at Spirit Rock Meditation Center. As always on retreat, each of us had what’s called “work meditation,” meaning we are responsible for performing a task each day to help the retreat run smoothly. Some people cut vegetables, some wash dishes, others clean the bathrooms. As much as possible, we maintain silence even if we work alongside others.
My work meditation was to clear the trays from the serving tables in the dining hall after lunch and put the leftovers in containers. I shared this job with a woman who introduced herself as Marianne and was about my age. She looked a bit frail to me, but we shared the work equally, only speaking in a whisper now and then: “Is this container big enough to hold the extra salad?” In the meditation hall, I noticed that she seemed to be with a young man who might be her son. I remember thinking how nice it was that they were here together. She had a kind face and a gentle smile and I looked forward to seeing her every day after lunch.
In addition to working in the dining hall, we followed a path to a small building where the teachers ate and then we brought their serving trays back to the kitchen. On the seventh day of the retreat, to my surprise, another woman accompanied Marianne. The three of us cleared the serving tables in the dining hall and then the new woman followed me outside as I began to walk down to the teachers’ dining room. She asked, “Do you know about Marianne?”
When I shook my head, she told me, “She’s very sick. She only has a couple of weeks to live.” Then she turned around and went back into the dining hall. I continued to the teachers’ dining room, shaken by this unexpected discovery. There, on the path, was one of the teachers. In my distress, I broke the silence. I asked her if she knew about Marianne. She replied that Marianne was here with her son. Then she told me something she probably shouldn’t have (which is why I’m not using her name). She said that on the information sheet we fill out when we get to the retreat, under the question that asks if there’s anything the teachers should know about us, Marianne had written, “I have just two weeks to live but it won’t affect my practice.”
The next day Marianne’s spot and her son’s spot in the meditation hall were empty.
In memory of Marianne, I vow to do my best not to let my illness affect my practice. I also vow to let my practice continue to teach me how to be sick — and to enable me to help others who are chronically ill as well as those who care for them.
Toni Bernhard
How Everything Changed
1
Getting Sick
A ROMANTIC TRIP TO PARIS
Paris ain’t much of a town.
— BABE RUTH
AT THE END of August 2001, I was to begin my twentieth year as a law professor at the University of California at Davis. To celebrate and to treat ourselves, Tony and I decided to go on a special vacation. Surfing the Internet, I found a studio apartment in Paris for rent at a reasonable price. We were not world travelers: a trip to Paris was a big deal for us. For three weeks, we’d immerse ourselves in the life and culture of the City of Lights. We were going to have a great time.
At the airport things got off to an inauspicious start. As we sat in our seats on the United Airlines commuter flight from Sacramento to Los Angeles, where we would change to a direct flight to Charles de Gaulle, we noticed the plane wasn’t backing away from the gate. Soon came the announcement that an equipment problem would be delaying our takeoff. Tony and I realized we weren’t going to make the Los Angeles flight to Paris if we continued to sit there.
While others onboard chatted about what was going on, we quickly got up, grabbed our carry-ons (all we ever take), and headed for the United Airlines check-in counter. Because we’d acted so swiftly, the agent was able to get us on a TWA flight about to depart for Saint Louis. From there, we could change to a nonstop TWA flight to Charles de Gaulle, arriving about the same time as we’d originally planned. Like characters on a TV commercial, we ran down the concourse to the TWA boarding gate, our carry-ons in tow. The flight had already boarded but they let us on.
Once off the ground, we praised ourselves. We’d been so much smarter than the other passengers. By the time we left the United Airlines counter with our TWA tickets in hand, those who’d been on the commuter flight had formed a long line behind us. Ah, pride. “Caution, caution,” the Buddha would have said, but at that moment we were so pleased with ourselves for deftly averting a disastrous beginning to our special vacation. Several doctors have told us that the odds are high that on one of these two TWA flights I picked up the virus from which I have never recovered.
We arrived at our studio apartment on the tiny rue du Vieux Colombier in the sixth arrondissement on the Left Bank. The apartment was much smaller than it had looked in the online pictures. It consisted of a bathroom and a kitchen, each of which could be comfortably occupied by only one person at a time, and a living room. It was furnished with a tiny table and two chairs, a love seat (a romantic euphemism for a couch that’s too small to lie down on), and a double bed in the corner. On the wall opposite the bed sat a bookshelf with a cabinet at the bottom. We found a tiny television set inside, but we had no intention of spending our time in Paris watching TV.
We wandered around that first day, waiting for nightfall so we could sleep and adjust to the new time zone. The next day, I didn’t feel well but
assumed it was only jet lag. The day after that, I felt awful but, refusing to believe it could be anything other than lingering jet lag, I suggested we go to a movie. We picked an American film, Anniversary Party. Frankly, I just wanted to sit in the dark and try to assess what was going on in my body. While watching the movie, I began to realize that I was indeed sick.
Soon thereafter I developed typical flu symptoms and couldn’t get out of bed. After three days, Tony and I reached the same hopeful conclusion: “This is no big deal. We still have eighteen days left in Paris.”
After a week, it became “No big deal, we still have two weeks left in Paris.”
“. . . we still have ten days left in Paris.”
The “days left” dwindled and dwindled.
We developed a routine. In the morning, Tony would go to a brasserie and then walk the streets of Paris, returning around noon, always hoping for a change in my condition. Then he’d go out in the afternoon for more walking. Maybe he would take in a museum. He was not enjoying these solo excursions.
During the second week of our stay, I wanted so badly to keep Tony company that I decided one day to tough it out. I insisted we go to see the famous Impressionist collection at the Musée d’Orsay, which had been converted from a train station into a museum and is known for its soaring interior spaces. The line to get in went around the block. We would have returned to the apartment right then and there had I not done my research and known to buy museum passes at a Métro station. Under the assumption we’d be museum-hopping together, Tony had bought two passes on our second day in Paris. We were allowed inside immediately.
As soon as I entered the Impressionist gallery, the adrenaline I’d used to get myself there wore off — this excursion had been a mistake. I collapsed into one of the lovely wicker chairs that sit in rows in the middle of the bigger galleries and told Tony to go ahead and enjoy the paintings. He would periodically come back and check on me, asking if we should leave, but I kept telling him to go off and look for a while longer.
As I sat, my eyes lit on a large painting by Claude Monet, Essai de figure en plein-air: Femme à l’ombrelle tournée vers la droite. A woman stands in a field, her face shaded by her umbrella. It’s painted with a soft, muted palette, yet is somehow wonderfully luminous. I was vaguely aware of musical wicker chairs going on around me — people would sit for a few minutes, get up, and be quickly replaced by someone who had been waiting to take the first free chair. I just sat, bathed in the colors and the composition on Monet’s canvas. I felt as if he’d painted this young woman in a field to watch over me so I could let Tony experience the museum. But my attempt at keeping him company had failed.
Except to see a doctor, that was the end of going out. My days were spent in bed. Too sick to read, I thought I’d try the little television after all. I was shocked at the poor quality of French programming: every channel had the worst kind of quiz show, featuring contestants who’d been coached to scream on cue, loud-mouthed obnoxious hosts, and the gaudiest of sets. In my naïveté, I was expecting high French culture to emanate from the tube. I gave up in frustration, but as the hours wore on, and I was still bored and restless, I tried TV again. I heard familiar theme music, actors were running around pushing a gurney, and on the screen the word Emerges appeared. Even with my poor French, I knew this was ER. I settled in for some televised comfort food, only to find it was dubbed into French. Movies in English were also dubbed instead of subtitled. “So much for TV,” I thought, as I turned it off and closed the cabinet doors.
I spent most of each day and many a night when I was too sick to sleep listening to the BBC on a shortwave radio Tony bought for me when it was clear I’d be in bed for a while. The BBC had a wonderful array of programs, including clever and funny quiz shows. It became my introduction to our own National Public Radio (NPR), which I began listening to every day soon after returning to Davis and finding myself bedbound. When I’m listening to NPR’s broadcast of the BBC News and I hear the plummy tones of the very same British voice that came over the shortwave radio in our Paris apartment announcing, “You’re listening to the BBC World Service,” a tinge of sadness passes over me. I’m briefly transported back to that bed on the Left Bank where it all began.
A few days after the trip to the Musée d’Orsay, we decided I should see a doctor. I looked in the yellow pages and found an entry for the “American Hospital.” Even though the name suggested home and a refuge for me, the person who answered the phone was just plain rude. When I described my symptoms, she gruffly said, “Well, what do you want us to do about it?” It was a harbinger of things to come back in California.
Next I tried the entry for the “British Hospital.” The woman who answered the phone only spoke French, but I heard concern and kindness in her voice. She put me on hold while she found a nurse who spoke English. She told me to come right in.
I still shake my head in disbelief when I think of the unnecessary stress we subjected ourselves to getting from our apartment on the Left Bank to the British hospital in a northern suburb of Paris, and thereafter to a pharmacy in central Paris, and then finally back to the Left Bank. Whew! Typical Californians, we never considered taking a cab. We weren’t being cheap; it just didn’t cross our minds. We think of cabs as something New Yorkers use. Foolishly, we walked from our apartment to the nearest Métro stop. Two transfers and several staircases later, we found ourselves above ground in an altogether different sort of Paris — the suburbs. Walking along with our map in hand, we made agonizingly slow progress. Even this small excursion was wearing me out.
The doctor thought I simply had the flu. She wrote down my diagnosis as grippe — a word that made me think of the rhyme for “postnasal drip” in Miss Adelaide’s song from Guys and Dolls. She wanted to be sure it didn’t turn into a bacterial infection that would ruin our whole vacation, so she gave me a prescription for antibiotics. We trekked back to the Métro and, after another transfer and more stairs, surfaced above ground at the only open pharmacy between the northern suburb and our Left Bank apartment, since it was one of those European days off intriguingly called a bank holiday.
The hospital and pharmacy ordeal is a haze in my mind, although a few vivid memories remain. I recall the hospital staff repeatedly apologizing because, since it was a bank holiday, they had to charge us for the appointment — a whopping fifteen dollars when converted from francs to dollars. I recall surfacing from the Métro to go to the pharmacy and finding myself face to face with a postcard-picture view of the Arc de Triomphe, the tiniest flash of the Paris we’d hoped to be seeing for three weeks. I also remember the agony I felt as I leaned against the wall in the Métro stairwells, using both hands on the banister to pull my body up step after step. Tony told me, years later, that when he saw me dragging my body up the stairs, he realized how sick I was. That’s his vivid memory of that day.
Our last week in Paris, I turned on the TV again and discovered that the French Open was on all day long. Language didn’t matter in tennis; even I could figure out that égalité meant “deuce.” I made a bed for myself on the floor, close enough to the TV to be able to see the ball being hit over the net, and a love affair was born. I still watch a lot of tennis. I can recite the names of players from all over the world. I love how international tennis is. I love the aesthetics of the game — complexity within seeming simplicity. All a player has to do is get the ball over the net, inside the lines. But within that seeming simplicity lies an array of strategies — physical and mental — that has the feel of a chess game: aces, lobs, volleys, passing shots. As I lay there learning to love watching tennis, it seemed I might be getting better. I was deeply disappointed that our vacation had been ruined, but I was hopeful.
The day before we were scheduled to fly home, I felt I was on the road to recovery.
2
Staying Sick
THIS CAN’T BE HAPPENING TO ME
You can argue with the way things are.
You’ll lose, but only 100
% of the time.
— BYRON KATIE
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 teacher, I made my living by talking. In early July, with the law school semester starting at the end of August, I shared my concerns with the dean, but he was confident I’d be fine by then. We agreed not to worry.
In mid-July, feeling stronger and stronger, 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 with 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 primary care 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 teachers — accompanied Joseph and Sharon. I thought, “Lucky, lucky me.”
How to Be Sick Page 2