What do you do when you contract a debilitating disease that’s not immediately life-threatening, yet for which there’s no known cure? That’s the dilemma faced by people with chronic fatigue syndrome (CFS). People with CFS have what the doctors call “nonrefreshing sleep,” severe headaches, and muscle pain.
Even healthy, energetic people have a difficult time doing their writing, which is a notoriously lonely, frustrating experience. So how in the world could someone with CFS ever write a book? Well, writers are encouraged to write about what they know, so Toni Bernhard has written How To Be Sick, which—as people have pointed out in glowing reviews—is actually about how to be well.
In 2001 Bernhard had it all. She was the happily married mother of two, and was a law professor at UC-Davis. While on a trip to Paris with her family, she fell ill with CFS. That was ten years ago. She has never recovered, and the medical profession has given her no reason to believe that she ever will recover.
I wanted to share her compelling story with the readers of The Morton Report, so I sent some questions by email. Here are my questions and her replies.
In How to be Sick you refer to the Buddhist term “dukkha.” Can you explain to the readers of The Morton Report what it means and how it has helped you to cope with chronic fatigue syndrome?
The word dukkha is often translated as “suffering,” but it’s too complex a concept to be subject to a one-word translation. It really means being dissatisfied with the circumstances of your life.
Everyone will experience difficulties in life. This has been one of mine. The Buddha taught that we can put an end to dukkha by accepting our life as it is—that is, by not being dissatisfied with it.
It’s that constant dissatisfaction that is a source of so much suffering and anguish for people. When I accepted this illness as part of the life I’ve been given, it opened the door to finding a new life.
What is the weather practice, and how does it help you?
Weather practice was inspired by the movie, The Weather Man, which takes us inside the meteorologist’s craft where we see that the weather is unpredictable and ever changing. I use this as a metaphor for life. It helps me hold painful physical symptoms and blue moods more lightly. I can’t predict when they’ll arise but I know for sure that they’re just blowing through, like the wind. It makes it easier to wait them out.
In the book you discuss what Buddhists call “mudita,” or sympathetic joy. How do you cultivate mudita, and what benefits does it bring to you?
I cultivate mudita as an antidote to envy. When I first got sick, envy would arise whenever I’d hear about people having a good time, especially if they were involved in an activity that I also loved. That envy was a great source of suffering for me and certainly didn’t get me any closer to being able to participate in whatever activity I was thinking about!
To cultivate mudita, I visualize the joy that others are having until I begin to feel joy in their joy. It’s almost as if they’re experiencing joy for me. It was hard to do at first, but with practice, it’s become a natural response to hearing about people having a good time or having something wonderful happen in their lives.
Can you describe your daily routine, if you have one?
My day is divided into three segments: morning, afternoon, and evening. I never know how I’ll feel when I wake up in the morning. I may wake up feeling completely unrefreshed—as if I didn’t sleep at all (even if I’ve slept ten hours). On that kind of morning, I stay in bed. I may listen to NPR, maybe watch an opera on DVD and spend some time on the computer (I have an active Facebook page for my book). If I’m having a “good” morning, I’ll do some writing from my bed, using my laptop and a notepad.
Between noon and 1 pm, my body just breaks down and I have to nap. That lasts 1 ½ to two hours. As in the morning, I may wake up a bit refreshed, I may not. If I’m feeling refreshed, I try to write again (I have a blog at Psychology Today which is my main writing commitment right now), sometimes even going to the nearby espresso place to sit at a table with my notes.
Regardless of whether I’ve had a relatively good or bad day, by 6-7 pm, I feel very sick and can’t do anything other than lie down and listen to NPR or to an audio book or watch TV.
Do you write in bed? If so, how do you organize your workspace?
My bed is my office. My laptop sits on a stool next to the bed. I prefer to write by hand and then enter it into the computer and then edit by reading hard copy. I don’t usually compose on the computer. Maybe I should because my least favorite part of writing is entering into the computer the edits I’ve made on hard copy!
What’s the longest period of time when you have been able to write continuously?
Two to three hours a day. If I overdo it, I feel the effects the next day and then sometimes can’t write for another week or even longer. I have to be very disciplined to pace myself with the writing. It’s hard because once a writer “gets on a roll,” it’s hard to stop. I’m not always successful in stopping and pay the price as a result.
How much time elapsed between the time when you began working on How to be Sick and when you finished it?
About two years.
How do you pass the time when you can’t write?
I listen to NPR. We get two stations in our area and I like to joke that I can recite by heart the daily schedules of each one. I also listen to classical music and watch opera DVDs. I find it hard to read books (I get dizzy easily) so I listen to audio books.
When you have the energy to read, what do you read?
My inability to read is not just due to lack of energy—I get dizzy reading. Sometimes, I look through Buddhist books, but I can only read a section here and a section there.
For books cover-to-cover, I listen to them via audio books. I listen to light stuff. My favorite “comfort books” are those by Alexander McCall Smith—his series about a woman detective in Botswana and his two series that take place in Edinburgh.