How To Be Sick– by Toni Bernhard

A Buddhist-Inspired Guide for The Chronically Ill and Their Caregivers

This book was brought to my attention by another Juvenile Myositis (JM) mom. When I was in the throws of upset, fear and pain during the first year after my child’s diagnosis with JM I read a book by Pema Chodron called, When Things Fall Apart. She is a Buddhist monk and I found this book calming and helpful. It wasn’t helpful in the same way as How To Be Sick is, though. Chodron’s book is a philosophical work and though I am not a Buddhist I could take some of her words and apply them to my decidedly, non-religious, but spiritural life. I had to make up my own mantras or helping words when I was feeling frightened or worried and it would have been wonderful if I had had a bit more guidance in this realm.

Ms. Bernhard’s book, How To Be Sick, published in 2010, is just such a book. It is philosophically based on her Buddhist practice, which she began prior to her illness, and she has used her experiences with a life-changing chronic illness to fashion a clear and practical approach to inner healing and coping with chronic illness.

Most of the book is geared towards the ill person and self-care. She gives us enough of her personal experience to connect with her and to understand how her Buddhist framework helps her deal with daily, as well as spiritual, needs. And though she is an adult, writing about her challenges as a chronically ill person, I found much in her experiences of suffering and approach to disturbing thoughts and feelings, that was helpful to me as a parent of an ill child.

There are a few sections in the book where she acknowledges that her illness also affects her husband/caregiver and her relationships with her children/grandchildren. It also restricts her access to an active social life. While my experience as a parent is similar, in that having an ill child changes everything in one’s life, there are a great many differences. A parent needs to help her child cope with their feelings, be an advocate for their child, be their first line of defense in the world, and at the same time, cope with ones own feelings of loss, grief, fear, anger and hope. In addition, there is often a partner or husband and other children in the family who need attention, and all those relationships change.

There is not a lot of specific guidance addressed to the caregiver here but many of the focal realms, such as, Facing The Ups and Downs of Chronic Illness with Equanimity, Accepting Pain, Healing the Mind by Living in the Present Moment, all speak to the ruts and paths our journeys as parents of chronically ill children take, and are useful to consider. And in those chapters and throughout this book, I found many instances where I said, “yes, that is how I feel too”, or “I can try saying that phrase when I am feeling dispirited or helpless.”

Sprinkled throughout the book are many quotes by Buddhists, poets and healers of one lineage or another. In the chapter, Using Compassion to Alleviate Your Suffering, I found this quote by Stephen Levine from A Year To Live.

When the heart at last acknowledges how much pain there is in the mind, it turns like a mother toward a frightened child.

As a parent of a child with a chronic illness, I too must parent the child in myself. I must make time to nurture and draw from my inner well. Then I can go back into the world and continue to care for others with more compassion and strength.