How to be Sick: A Buddhist-Inspired Guide for the Chronically
Ill and Their Caregivers
Stanchi si diventa: Manuale di sopravvivenza alla CFS
Turin: Seneca Edizioni, 2010
Imagine you are a high-flying law professor at the height of your career. You have a happy marriage, are involved in the local community, love your subject, and enjoy working with students. Your socio-economic position is comfortable, and your family relationships are gratifying. In short, life is smiling at you, and you are smiling back.
Then you go to Paris—and everything changes. A mysterious bug floors you. Standing up becomes a struggle, noise bothers you, and you are magnetically attracted to your bed. Except that you are too exhausted to sleep—too exhausted, in fact, to do anything at all. You return to the classroom—but the noise, lights, and interactions are just too overwhelming. You start writing a paper—but the brain-fog, headache, and impaired memory allow you to work only for a few minutes. You explain what’s happening—but nobody understands, and since you don’t either, how can you blame them? Days go by and doctors reassure you it will go away. Except that it doesn’t, and ten years later, you are still bed-bound.
This is the perfect storm that hit Toni Bernhard—and the other 17 million people in the world who are estimated to be suffering from myalgic encephalomyelitis (also controversially known as CFS, or chronic fatigue syndrome). At its worst, this Kafka-esque illness is as debilitating as late-stage cancer, multiple sclerosis, and HIV—but it is not fatal, and so does not carry the drama (or empathy) associated with them. There is no cure for it and patients—including children—are largely left to themselves and their families. It can hit anybody, at anytime, anywhere in the world, without any warning.
When doctors are baffled, friends desert you, and your life goes upside-down, where should you turn? Buddhism, Bernhard suggests in this compact and refreshing guide on how to manage a chronic condition. Illness does tend to bring out a renewed sense of spirituality, but what is interesting in Bernhard’s case is that hers is by no means an overnight, illness-induced conversion: she was already a committed Buddhist before becoming ill with ME/CFS, and she candidly admits that her illness made it more difficult to adhere to her faith. It also made it harder to write How to Be Sick—she did so from her bed, laptop on her knees, printer at hand, a few minutes a day, year after year. The result is an inspiring and optimistic guide on how to be sick—on how to live a life of equanimity despite the limitations of a chronic illness.
Bernhard believes that Buddhism can help. Suffering (dukkha) is the First Noble Truth of the Buddha, while kindness (metta) and joy in the joy of others (mudita) should be the pillars of our lives. Humans are inevitably subject to disease and death; our lives are in constant flux and the only way to prepare for change, so Buddhism dictates, is to cultivate compassion (karuna) and equanimity (upekkha) for ourselves and others.
Were this the end of the story, How To Be Sick would be interesting but hardly original. Instead, Bernhard goes on to admit that those Buddhist tools failed to assist her when she needed them most. She just could not muster enough energy to meditate. As such, she had to adapt Buddhism to her specific chronic condition, rather than the other way around. Feeling compassion for others, she soon discovered, is far easier when you are well than when you are confined to bed and looking, from your window, at people happily going about their business. The envy can be overwhelming.
But this can and should be corrected. Frustration about an illness that doctors don’t fully understand should be greeted with the hope that sooner or later they will. The obvious complaint “why me?” should be countered with the simple question “why not me?” And physical pain should be tackled with what the Buddha defines as “patience endurance” (khanti). Bernhard’s approach is far from dogmatic: try this or that meditation practice, she suggests, and if it doesn’t work or you are too fatigued, switch to another. Her contribution is refreshing because she does not want you to convert to Buddhism—she just wants you to feel better.
On the face of it, Pelletta’s book is shorter and more concise. She looks at simple everyday problems and her work has little to do with the transcendent state of mental well-being sought by Bernhard. Where Bernhard takes great pain to explain her subject and to gain her reader’s attention, to the point of seeming didactic, Pelletta writes in short, deliberate sentences like precision bullets—hitting the target and holding firm in the reader’s mind.
These differences aside, however, the two books are strikingly similar. Pelletta, too, was hit by the “ME/CFS storm” in a way that reminds us of Bernhard’s Paris trip. A Brussels-based parliamentary interpreter for over 30 years, Pelletta was abruptly forced to abandon her job and is, years later, still severely limited in her daily activities. Other issues she tackles will be very familiar to Bernhard’s readers: the apathy of the medical community; the problems experienced in attempting to explain ME/CFS to family and friends; the loneliness that being house-bound imposes; the loss of earning and professional gratification; and the frightening uncertainty associated with a condition that could last for years.
Yet the most visible convergence in these two volumes comes in their conclusion: accept with equanimity whatever in life cannot be changed. “We must accept our own endless powerlessness”, Pelletta concludes, in strikingly spiritual terms that Bernhard would likely endorse. For the Buddha, too, was a common human being and endured severe pain without distress.
There is no doubt that ME/CFS took a heavy toll in the life of both Bernhard and Pelletta. They have experienced the skepticism of doctors, the insensitivity of acquaintances, the bewilderment of friends, and the breakdown of families. But illness has also shown them something new—human fragility—and given them the tools to better deal with it. It has made them wiser, sooner. The reader, too, is left wiser by their books and by the message of courage that they convey.
Dr Herman Salton graduated from Exeter College, Oxford with an MPhil in International Relations, which he gained while suffering with ME/CFS. He is the author of two books on law and politics, and is working on a third one.