Toni Bernhard wrote the lovely, gently wise How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers after she was stricken with a mysterious and painfully fatiguing illness that had never gone into full remission after 10 years.
In 2001, to celebrate 20 years of being a full-time law professor at the University of California-Davis, Toni and her husband flew to Paris for a special vacation. Toni developed flu-like symptoms on her very first day in Paris; the “Parisian flu” persisted, leaving Toni unable to leave her bed throughout the entire vacation.
Upon returning home, repeated visits to specialists, scans, tests revealed nothing more specific than chronic fatigue syndrome (called myalgic encephomyalitis in other countries), post-viral syndrome, or viral induced central nervous system dysfunction. In the decade since, Toni has tried many traditional and experimental treatments; nothing has reliably alleviated the severe pain or numbing fatigue of her condition.
In How to Be Sick, Toni has drawn on years of meditation practice and studying the wisdom teachings of the Buddhist tradition to help cope with the social isolation, unremitting pain, disappointment and despair of her chronic illness and the impact on her caregiving husband. She offers many practical tools based in easy-to-read chapters such as Finding Joy in the Life You Can No Longer Lead and What to When (It Seems) You Can’t Do Anything. Compassionate and practical advice for millions of sufferers of chronic illness and their caregivers. Among my favorites:
Just as wind blows in the weather, often unpredictably and not on our timetable, life blows in periods of illness and wellness, not always on our timetable. Coming to understand the impermanence of everything helps us accept rather than resist what is already happening. Good health and bad health come and go like storms and sun. Relaxing into accepting what is allows us to cope with what is.
Remembering with gratitude the good that was when facing irreversible loss now. When no longer able to work, “This was a productive and satisfying career that lasted 20 years.” When friendships fall away, “This was a loving friendship that nourished me for 25 years.” When no longer able to travel or visit others, “This was a body that was illness-free long enough to raise my children, attend their weddings, teach and encourage hundreds of law students, and keep my husband company out in the world.” Embracing what is without losing what was.
Losing steady companionship of friends and family can be one of the greatest losses of chronic illness. Toni found comfort in the reframe:
“Language has created the word ‘loneliness’ to express the pain of being alone. And it has created the word ‘solitude’ to express the glory of being alone.”– Paul Tillich, The Eternal Now
Toni was able to take pleasure in her new-found, if unchosen, time to read, listen to music, sky-gaze, even rejoice in her imagination.
The chronically ill and their caregivers need permission to stop doing things that make symptoms of the illness worse: windows don’t get washed as often (or at all), dishes and mail may pile up on kitchen counters and dining room tables. Letting go of multi-tasking and relishing doing one task at a time, one moment at a time, brings ease rather than guilt and pain.
Let things take their natural course.
Then your mind will become still in any surroundings,
like a clear forest pool. All kinds of wonderful,
rare animals will come to drink at the pool….
You will see many strange and wonderful things come and go,
but you will be still. This is the happiness of the Buddha.
– Ajahn Chah
May these teachings in How to Be Sick be useful to you and yours, in times of good health as well as poor health.