by R. Sanderson
The reason I had turned to Toni Bernhard's book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, was to gain new insight and ideas on how to best live with several chronic illnesses. I have now surpassed the 25 year point with ME/CFS and felt it was time to review my situation, perhaps forge a new path. I would describe the following as the 15 best take-away messages from Ms. Bernhard's book:
• concentrate on what you can do and not on what you have lost or cannot do
• separate yourself, the "I" from the sickness in your body
• don't blame yourself for having become ill
• try to be more kind and friendly towards yourself and others
• try to respond more compassionately to your pain and suffering
• don't dwell on how you wish things would be, but rather accept them "as they are"
• consider that your desire for things to be other than they are is linked to stressful thoughts
• follow positive thoughts and try not to invest feelings on negative or unknown thoughts/situations
• keep your responses simple to others instead of trying to explain/justify your reasons for doing so (linked to more stress)
• learn to speak wisely as well as recognize when to be silent, don't engage in divisive speech
• accept life as it comes, without blaming anything or anyone
• learn to let go, as little or as much as possible, in order to achieve more peace in your life
• try to distract yourself by pleasant/pleasurable things when in pain, focus on your breath and let thoughts go by (meditation)
• live in the present moment (practice mindfulness)
• be realistic about your potential for health, acknowledge there may not be answers to all your problems, don't be attached to the outcome
However, it was an article posted a few months ago, "Is It Time To Give Up Trying Pt. II: Breaking the Addiction for a Cure" by Carol Lefelt, on one of the popular ME/CFS blogs that raised questions about when to stop fighting our illness and pursuing that illusive cure. For as long as I've had ME/CFS, I can remember countless theories, good and bad treatment recommendations, controversies and setbacks, some promising studies but also many disappointments. During much of this time, I have been actively involved in educational programs and advocacy campaigns. But things are starting to change, as they do in everyone's life. I've grown, I've aged, I don't have the same endurance and vigor as 25 years ago.
As I am now in my sixties, I really have not made any great strides in my personal health. I also notice that I am not getting as excited nor driven to sign up for another adventure, much like "The Raiders of the Lost Ark", to chase after another study or protocol. At first I thought it was just me, perhaps I was becoming a little indifferent or selfish, as I become older. Then it dawned on me, "With age comes wisdom, but sometimes age comes alone" (Oscar Wilde).
I thought about what Ms. Lefelt had written in her article that when medical science does not provide the remedy and answers, then our hope should come from something else. She describes that option as the "healing" that is possible from a transformative process of our physical, emotional, spiritual and psychological self. Her article shared many sentiments by other mature individuals living with chronic illness which I could really relate to, such as making the best of what they have, accepting where they are, and being able to experience pleasurable moments, particularly when someone is not trying or wishing to for things be different than they are. Many of the views expressed by those individuals seemed to echo some of the concepts in Toni Bernhard's book—for accuracy's sake, I need to state that I don't know whether any of these ME/CFS patients had read Ms. Bernhard's book or if their views had any connection to her material.
Nevertheless, I could see a common thread in their views and approach and it started to make more sense to me as to why I began to organically feel different and compelled to stop and check where I was heading. I see that I need to create a new roadmap for where I am in my life right now—correction, reset my GPS. I consider the article and Toni Bernhard's book as travel guides which will hopefully point me in the right direction.
Read the book review, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.