Life is full of uncertainties. And when being chronically ill, these uncertainties can be overwhelming, in my experience.
‘How to Live Well with Chronic Pain and Illness’ by Toni Bernhard is a helpful and practical guide. I highlighted so much, I thought the e-reader was going to run out of ink.
Toni Bernhard used to be a law professor when she got ill and ended up with M.E. (like me). She shares her experiences in an open and honest, but not sentimental, way. All things she suggests or advises, are supposed to be done mindfully. And when you think McMindfulness to be a hype, forget the m-word, but try to keep in mind the very essence of doing things with care and attention, and remember to be kind and gentle with yourself. Many good things can be said about ‘How to Live Well,’ let me narrow it down to two aspects that were most important to me: impermanence and impertinence.
An illness or injury might be chronic, the symptoms are not, is what Toni explains in this book. To have some peace of mind, it is helpful to remember that these symptoms are mostly impermanent. For instance, when dealing with a headache, she suggest to be gentle by telling yourself ‘my poor head,’ and then repeatedly thinking about its impermanence. It will not always be like this. And when dealing with feelings of fear, worries or something else that is nagging you, the impermanence is again to be reminded.
One day, when I was having some difficulties, I kept telling myself it was impermanent. At least, that is what I thought. Instead, I noticed I was reminding myself ‘this is impertinent.’ I smiled, I probably had been making this mistake for a long time. When feeling low or trying to handle physical difficulties: remember the importance of impermanence.
But of course being chronically ill is impertinent, those are my words, not Toni’s. People are not supposed to be ill, but are expected to work, or contribute to a household or family, and to partake in social events. I could write a piece the size of this review with the ridiculous requests I got over the years, others inviting me, asking, insisting, urging me to come to a party or some sort of event. This happened even after I have been ill for years, leaving me feeling sad and embarrassed. According to Toni ‘we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain.’ (p. 112)
I often wanted to ask my partner to bring me a bag of equanimity from the grocery store, or a bottle of confidence, a box of tranquillity. Anything to have some relief from all this madness, or ‘a life turned upside down,’ as Toni calls it. But since those items are not for sale, there is nothing else but to try to rest back and read or reread a chapter from this book.
It would have been nice to conclude this review by telling you I no longer feel overwhelmed by uncertainties, that life is nothing but bliss – all thanks to this book. But since Toni Bernhard is honest and giving in this wonderful book, I owe it to her to be honest as well.
I can still feel paralyzed or threatened by extreme fatigue, pain, worries, anxiety or embarrassment – inevitably followed by disappointment. But thanks to ‘How to Live Well with Chronic Pain and Illness’ I am aware of this self-criticism, and I know I am better off with being kind to myself. This is one of so many baby steps, I could not have done without this guide.
My equanimity might be nothing compared to Toni’s, but who knows? I might end up with a bit more in the long run… and perhaps even find some peace along the way.
I received a review copy from the publisher via NetGalley, but bought the book as well.
Recently, a new and private community started on Google+: Being matters.
A mindfulness group for the chronically ill. Forget symptoms, instead embrace your soul and inner calm. Just breathe and be… You are not alone.
Life can be hard or may look turned upside down when being ill for years. Let us help each other out by sharing thoughts and trying to find peace. We are not human doings, we are human beings.
>> Please, feel free to join or share <<
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