• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

In the Dragon's Jaws: How To Be Sick - A Buddhist Guide to CFS by Toni Bernhardt #1

View attachment 2189The Quality of Life Blogs

This is the start of a series of blogs on Toni Bernhardt’s book “How to be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers”. I will supplement my background with a more Western approach with Toni’s Buddhistic approach - and see what happens.

Tony came down with CFS during a ‘romantic’ or at least planned for romantic trip to Paris in 2001. Unfortunately whatever she got she got on the plane ride over. I’m going to skip Chapter I and II on how much fun it is to spend your long awaited European vacation watching trashy French TV (the only kind apparently!) while stuck in your bedroom and then the progression of her illness (got better/got worse/stayed worse) in California.

I think the poem in the Preface probably sums up what this book is trying to accomplish.:

Nothing to rely on in this or any world
Nighttimes falls and the water is flooded with moonlight
Here in the Dragon’s Jaws
Many exquisite jewels
Setcho Juken​

Here we are stuck in the Dragon’s Jaws with CFS but are exquisite jewels to be had there? Setcho Juken promises us there are.

Challenges - Toni then spelled out the challenges virtually everybody faces with this illness.

• Coping with symptoms that just won’t go away.
• Coming to terms with a more isolated life
• Weathering fear about the future.
• Facing the misunderstanding of others
• Dealing the health care system

Good strong challenges for any Buddhist or saint to be (or any human being) to take on. :)

Toni starts off the second section -Accepting Pain with another poem that again highlights some of the same key aspects of our journey; the first of which is that the journey is into the ‘darkness’ , so to speak. That is the path of illness; when the path is dark we must find a way to travel in the darkness and understand it but if we can do that we can find that the darkness too ‘blooms and sings’ - in its own peculiar way.

To go into the dark with a light is to know the light,
To know the dark, go dark. Go without sight
And find that the dark, too, blooms and sings
And is traveled by dark feet and dark wings….
Wendell Berry
But how to embrace the dark?

East - Dukka - The Buddha says one way to do that is through understanding- the first and most noble truth of all the Buddha’s truths…- Dukka! Or as it’s often been translated “Life is suffering”. This insufficient translation has, no doubt, caused countless spiritual seekers to simply look elsewhere. But the meaning is more subtle than that. Dukka points to the central mistake we, as humans make, which ironically, lies in our desire not to suffer. Yes, it is our attempt to avoid suffering that causes us to suffer and this is the Second Noble Truth of Buddhism - suffering arises from our desire or our ‘thirst’ to have thing be a certain way and our unwillingness to allow it to be any other way.

You can argue with the way things are
You’ll lose but only 100% of the time
Byron Katies​

West - Being - Which suggests that suffering arises out of a rupture of Be-ing.. or out of our inability to ‘allow’ a situation to be just as it is. The key word, of course, is ‘allow’. Can we allow ME/CFS to be? Can we allow the consequences of ME/CFS - reduced financial resources or even poverty, relationships that disappear, lost dreams and ambitions…..… to be as they are or do we struggle against them? The problem, of course, is that they really are THAT way! My ‘career’ never got started…..I am dependent on my family financially. I frequently have head pains….my body frequently hurts…..I rarely feel ‘well’. ME/CFS gets pitiful funding……

In EST they used to call this being ‘whole and complete’ with something. Can I be whole and complete and allow these things to be just as they are (and are not)? Sometimes I can and I feel peace and most other times anger and upset rises (and with it discomfort and pain). This will take work.

We’ve all had our hearts broken by our relentless search to avoid suffering”
John Travis​

What an amazing statement that is by John Travis. We've all had our hearts broken by our search to AVOID suffering.....My guess, though, is that we’re like spiritual tuning forks set to being whole and complete; so long as we veer off the path the fork is going to vibrate causing us pain; but so long as we can ‘accept’ or be ‘whole and complete’ with a situation we will find peace.

As Werner Erhard said - we don’t often get what we want. Even healthy people don’t often get what they want which leads to frustration and upset……but if you choose what you have - that’s a whole different ballgame.-

Life is a ripoff when you expect to get what you want
Life works when you choose what you got
Actually what you got is what you chose
To move on, choose it

Werner Erhard​

I look forward to reading Toni's book and working with the tools Buddhism has developed to create happiness and well-being. They were designed for everybody - not just those who are well.

Toni Bernhardt's website

How to Be Sick on Amazon.com

Comments

Thank you, Cort, for writing about this topic with such thoughtfulness and care.

I am not a Buddhist, but my thinking about illness was, early on, influenced by what I learned about Buddhism in a comparative religion course in college. And as my health deteriorated, I returned to that sacred literature to console myself.
 
That's when I learned about Buddhism as well. I find it a very practical way to deal with difficult issues. I find it more of a 'practice' than a religion - a practice, of course, that has benefited from thousands of of years of people practicing it, which is an odd statement to say - since its all about being in the ever expansive 'NOW'.....:)
 
I have been practicing meditation for 12 years - and got much more serious with the practice as a completely new way to live life (supplemented by Buddha Dharma- though I am not "Buddhist") after being struck with CFS 4.5 years ago. I have undergone a positively radical transformation of how I relate to my illness and life. The earth is shifting.

However, it does take a great deal of effort. Simply understanding some new concepts is not enough if you're looking for transformation. You've got to devote yourself entirely, and work you a$$ off. But it's beyond worth it- and gets better and better.
 
So glad to hear this Recovery Soon....you have a lot to tell us I think :). Love to hear some more...
 

Blog entry information

Author
Cort
Read time
4 min read
Views
828
Comments
5
Last update

More entries in User Blogs