“Open your heart to your suffering”, Toni Bernhard
There can be little doubt that those of us with fibromyalgia/chronic fatigue have challenges that have forced us to live life differently than those who have ‘health privilege’ (a term I am unashamed of borrowing from Carolyn Thomas- www.myheartsisters.org). Often thought of as malingering, hypochondriac, weak, attention seeking, depressed people we often live in quiet desperation. By now we recognize that we have developed these conditions because of an over-stimulated nervous system which cannot sustain itself in a healthy manner any longer. It is as though we have over stretched the central nervous system just as a rubber band might become less elastic after constant over stretching. Whatever normal is, our hyperaroused nervous system is suffering from years of responding to stimuli that are too overwhelming for our sensitive natures and has become functionally abnormal . In spite of the fact that fibromyalgia is not a disease, but a dis-ease, perhaps precipitated by an illness or accident, or long-standing stresses from general life experiences, we have become chronically ill because of the pain, fatigue and myriad of other symptoms with which we are faced.
Reading the comments that are posted in the 99 blogs (this is number 100!) I have written over the years I am always struck by the physical and psychic pain of the readers. Some are functioning fairly well while many others are bedridden and socially isolated. None of us live with the expectation we will be cured of the pain, fatigue, intense itching, depression, anxiety, nausea, flu-like symptoms and other debilitating challenges of these syndromes. Therefore we are left with this question posed by Toni Bernhard :” Can we live a good and fulfilling life when our activities are so severely curtailed?”. The answer, of course, is “YES!”, if we live in the moment.
I want to encourage readers to read this book as the daily/yearly experiences of Toni Bernhard are so similar to many who write to me often (and painfully), wondering how to keep on keeping on. After reading her book I decided to practice her exercise which she calls “drop it”, similar to ‘letting go’. As my anxieties escalate during the day I deliberately think the thought I am having at that moment then I consciously drop it. I live with the focussed anxiety of having a flare up from fibromyalgia/chronic fatigue, living with a huge painful herniated L4-5 disk, and worrying about having another heart attack, all the while knowing I must exercise at least 30 minutes a day in spite of the pain. So, for me, the anxieties are almost constant. Dropping the thought has been very helpful. I can’t say it lasts a long time, but I have been keeping on track and repeating the phrase over and over. In short, like I have been writing about for years now- I am trying to change my brain and short circuit that trodden down path to another that is called ‘living in the moment’, or ‘mindfulness meditation’. I no longer speak of my fibromyalgia/chronic fatigue with health care professionals- the search for answers is fruitless. I can experience joy if I live in the moment and not look back to a lifetime that I can barely remember- one without pain. I can not predict what tomorrow will bring. I only have now.
There are many of us living with medically unexplained symptoms, such as those with fibromyalgia/chronic fatigue, multiple chemical sensitivities, Gulf War illness, and post traumatic stress disorders, most of which are also called somatization disorder, a label that can place us in the realm of psychiatric investigation and therefore denigrated by many health professionals. As Toni Bernhard has written: “As you experience the unpleasant mental sensations of being treated in a dismissive manner by this medical person, instead of reacting with aversion, consciously move your mind toward the sublime state of loving-kindness, compassion, or equanimity- directing the sublime state at yourself” (p.170). This is the essence of mindfulness meditation- being kind to ourselves- exploring our thoughts without criticism, without judgment. In the words of Jon Kabat-Zinn: “Mindfulness means paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally” (p.2 Wherever You Go There You Are). There isn’t any other way for us to proceed: we can’t change our diagnoses by lamenting, ruminating, seeking one treatment after another or depressing about our conditions. Now comes the difficult part- practice-practice-practice what I preach. Be kind to myself and open my damaged heart to my suffering, without reproach or wishing for what cannot be!
On lighter note: