I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!
In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.
I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?
So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.
It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)
I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.
Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.)
What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.