It’s Just the Weather, Baby! Reading Toni Bernhardt’s ‘How to be Sick’ #3

December 21, 2011

Posted by Cort Johnson

Chapter 4 of How to Be Sick – The Universal Law of Impermanence

There’s just no getting around universal laws. They’re like gravity – you cannot like gravity, you can protest against gravity, you can pretend gravity doesn’t exist but as soon as you roll out of bed there it is – gravity.

The Buddhist law of impermanence – that nothing is permanent – that everything changes – is like that. Is suggests that you can’t count on anything…and you really shouldn’t try because at some point it’s all going to disappear anyway. Your health, for instance, is going to disappear completely at some point. That’s a guarantee! There are no other guarantees; there’s no guarantee, for instance, that while you live you’ll be healthy or without pain or live in the circumstances you wish. That guarantee, unfortunately, did not come with the package.

At the end of the chapter Toni refers to ‘broken glass’ practice which is based on the realization that we are all glasses which will eventually be broken; i.e., brokenness or ‘ill’-ness is baked into and is an inherent part of being human. It may come earlier or it may come later; it may last a long time or a short time but it’s part of the package; if you’re human you’re going to have to deal with illness, physical decay and parts that don’t work the way you expect them to.

Given that we are physical beings; i.e. we operate in a physical world, it stands to reason that some part of us are going to have parts that don’t work very well, and, of course, we know this to be true. At any given time, for reasons of genetics, ‘accidents’ (bumping up against a pathogen at the wrong time), aging – whatever – a pretty significant portion of the human race has some parts that don’t work well.

It’s upsetting personally to be ill – but it’s also part being human and that’s a very useful thing to understand in a world when anything can happen to anyone at any moment. Of course, we’re fine when something good happens – we can usually handle that kind of change – but when something we interpret as ‘bad’ happens, we tend to protest, get upset and rail at the way we’ve been treated (as if the world were targeting us, in particular). That leaves us in a state of dissonance with the world; it is one way and we are stuck protesting that it shouldn’t be that way; and the more we protest, the more out of sync and frustrated we become.

Given that bad stuff such as illness happens, and it happens pretty regularly, it would behoove us to find a way to give it a place. But how to do that? Toni points to a saying by Zen Master Dogen to suggest one way.

“Without the bitterest cold that penetrates to the very bone, how can plum blossoms send out their fragrance all over the universe?”

Let’s try to translate this into ME/CFS.

“Without experiencing this bitter disease that penetrates to the very bone, how else could people with ME/CFS have sent out ??? into the universe?”

For me this is one of the most difficult questions to ponder. It’s so easy to get wrapped up in the difficulties this disorder poses and if truth be told we’re more a culture that looks for what’s wrong than what’s right and you have to really dig deep to find what is ‘right’ when you are ill.

Something can be had from every experience, however (“the bitterest cold is necessary for plums to flower”). Toni asks the question, “what has CFS allowed to flower that might not have flowered otherwise?”

Toni mentions a love of classical music that she would not have developed otherwise and an appreciation for the ‘smaller’ (or perhaps the larger?) things of life that get lost for most of us in the ‘doingness’ and the rush of everyday life. She’s certainly not alone…..Elizabeth Tova poignantly demonstrates an amazing world that opened up when she focused on the world of a snail after her disabling brush with a virus in her book “The Sound of a Wild Snail Eating”. That is a lesson that our sometimes frantically busy society could learn.

Switch – In doing so both women shifted away from a sense of fulfillment based on doing and achieving (our normal mode of being) to a sense of appreciation of the basic elements of life…. beauty, relationships, the work of others. We see Toni make the shift as we watch her pain and upset at not being able to be with family members slowly dissolve away as she focuses instead on the love she feels for them.

These weren’t easy transitions; they took work – mental work – mental training to shift the mind out of its prevailing mode of despair and upset. Training the mind, though, is really what this book is about; it’s a kind of training manual that provides lessons in “How to be Sick”. . . it’s about ways to make the plum flower bloom in the midst of winter.

I wonder what kinds of spiritual strength one can gain from a focused grappling with these difficult lessons. With negative thoughts leaving one frustrated and upset (and with less energy), how about viewing CFS as a playground for enlightenment?

That’s a kind of ‘flower’ that ME/CFS might bring forth in someone which might not bloom if they were in a different situation. What about developing a keen sense of acceptance for things that are out of our control – letting go of what we thought should happen – and simply accepting what did? In most cultures that’s called wisdom but wisdom is not something we learn about in schools anymore.


It’s Just the Weather 

The idea that anything can happen at any time is unsettling, but for me there is a nugget of gold hidden in this realization and I think it particularly hits home in a disorder like CFS with all its variable symptoms. If anything can happen at any time, if everything really is variable, if one’s symptoms, thoughts and feelings really are ultimately transient – what is left?

The person or being experiencing that variability. The idea that we are not our low energy levels, our symptoms, our thoughts (e.g., “this is wrong!”)

or feelings (despair, frustration, anger or ambitions) … is the hidden nugget for me. Our problems occur when we mistake a thought for reality. For instance the thought that it’s wrong to be sick commences a string of other thoughts (this shouldn’t be happening, I am somehow bad or damaged)….that drive a host of negative feelings (anger, frustration, despair) that can overwhelm us, leaving us in a dark place.

One way Toni resolved this cycle of negative thought was to simply observe the rise and fall of thoughts, thus allowing her to treat them more lightly and get less wrapped up in them, in effect, allowing them to blow past like the weather they are. (If we are chronically angry, frustrated or upset, the thoughts certainly seem ‘permanent’, but this is because we keep reenforcing them.)

“I work on treating my thoughts and moods as wind, blowing into the mind and blowing out. We can’t control what thoughts arise in the mind, and moods are as uncontrollable as thoughts. By working with this wind metaphor, I can hold painful thoughts and moods more lightly, knowing that they will blow through soon…”

It’s not that the painful thoughts and moods disappear, but that they lessen their grip and their time with us diminishes; they blow through and around us – but like the weather, they are not ‘us’.

I recently went through a day just watching my thoughts come and go labeling them simply as thoughts. I disregarded their meaning – they weren’t good or bad or right or wrong – I just labeled them as thoughts . They were the wind blowing through my mind and as I did that, they began to disappear and my mind began to clear – I began to reappear, rested and calm.

8 comments

{ 8 comments… read them below or add one }

Naomi Flanagan December 22, 2011 at 2:55 am

I really found this book to be immensely helpful. ‘Weather practice’ is one of the most useful tools I have used since reading it -remembering my moods and thoughts will blow through like a breeze. Cultivating compassion for oneself and one’s body was the other useful tool. I’d recommend this book to anyone open to a different way of thinking about living with illness.

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Cort December 23, 2011 at 10:13 am

Thanks Naomi, I find these practices to be quite helpful in calming down my body and mind and cultivating better feelings and I look forward to the rest of the book. Its a continual practice but slowly it starts to seep in.

It would be nice to have the sense of natural calmness that I had before I came down with CFS but I imagine that part of my brain is just not working very well – and many studies attest to that. Short of some drug or other treatment that does it for me it looks like I’ll have to manually create that myself. :)

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MishMash December 22, 2011 at 3:13 pm

Hey, I’ve heard about this before! Isn’t it called “cognitive behavioral therapy”? (“just go to your happy place; don’t think about the pain; you are floating in space….ommm”) Unfortunately she’s right. It is the only thing that keeps you going day to day.

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Mandala December 22, 2011 at 10:27 pm

Sorry MishMash, this is definitely not CBT! This is challenging spiritual work and the only thing that excites me about having M.E. I think it’s fortunate that Toni’s right!

Thank you, Cort, for your work of writing this wonderful article that so beautifully expresses some of the spiritual issues I’ve been grappling with on the “Spirituality and Suffering 2″ thread recently. I felt such familiarity and recognition in what you’ve articulated. I can’t seem to get to the place of separating myself from my thoughts and feelings yet, though, and I find it unsettling to contemplate what exists of me apart from my activity, roles, etc.

However, I had a strange experience when I got diagnosed with M.E., a certainty of knowing that having this illness would have spiritual meaning. I am not prone to thinking like that, and I would normally have reacted with anger and self-blame to such a diagnosis, so I was puzzled. But it seems to be true.

The first two years following my diagnosis (activity level 2) created a space into which a very old trauma, that of having been raped, which I had never forgotten but never dealt with, presented itself in order to finally be come to terms with. This has been a difficult and lengthy process, but the ensuing understanding of all those fragmented pieces of me and my life, which had formerly been incomprehensible, has been an enormous relief and blessing. It was as if this traumatic experience needed the quiet space of my illness in which to come forth, for the trauma itself had occurred decades ago.

There later developed a mood of inescapable resentment and anger at what I have been denied in my life that I was finding very difficult to deal with, with M.E. topping the list. My numerous daily rest times were plagued with poisonous thoughts.

I do not know much about Buddhism, but one day I read Laurel’s blog on this site, a recent part in which she explores the question of what “small candles” we can be grateful for. I normally don’t react well to that idea, but soon found myself unavoidably thinking of such things during my rests. I was astonished at how many things spontaneously arose that I could honestly be grateful for. One day, I thought of all the labourers who produced all the materials and all the labour that built the (now shabby) apartment I live in.

So, for now anyway, all I’m doing during my rests is breathing and giving thanks. This practice seems to bring much solace in and of itself, and I surprisingly find myself at ease with a solitary Christmas. Your article is timely indeed, for this is a good time to reflect on what is being incarnated within us through M.E.

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Cort December 23, 2011 at 10:22 am

How interesting MishMash – that producing these times of quietness allowed you to access this incident and begin, to put it in EST’s terms (a course I did long ago) – to release it.

When I am able to separate myself from my thoughts – which doesn’t happen all that often – what is left is a much bigger me! If I’m not in that ‘space’ then a thought or feeling is probably driving me…instead of me being the source of that thought – it is controlling me…(kind of complex :))

I love the idea of small candles – small wins – small timeouts from the worries, etc…small moments of grace. Thanks! If you see this can you give a link to Laurels blog?

For years every time I woke up I would have maybe 30 seconds of calm and that swarm of contentious, angry thoughts jerked my body into a state of tension….I am doing better now but these subterranean signals are still ongoing. I think they are part of the fatigue state as later in the day when I usually feel better – they slow down.

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Mandala December 23, 2011 at 1:06 pm

Cort,

Here’s the link to Laurelb’s blog. She had a blog on PR but is posting all on her own website now.
She writes so beautifully, and strikes an amazing balance between hope and realism.
Her essay on “small candles” is her most recent one.
http://www.dreamsatstake.com/

Sarah Robinson December 26, 2011 at 2:56 pm

Yippie! Yippie! I’m not alone.

I’m just reading How to Be Sick, and I was so glad to stumble upon it. Now I find that I’m one among many. It makes my heart glad to know I’m in a community, many of whom apparently are even reading the same book at the same time.

For me, ME/CFS has been like attending surrender school. I’m nowhere near graduating, but I can honestly say I’m so very glad I’m not the ambitious, driven person I was 8 years ago. Today I’m freer than that. And my worth no longer depends on an identity I’m strangling the life out of (the strangled identity, of course, always returning the favor). That’s worth so much.

Toni’s book is helping me let go, let go some more. Referring to the mind’s ability to spin out lifetimes of made-up scenarios that are painful to us, I loved her quote from Jack Kornfield, “The mind has no shame.” I thought how true that is of my own mind and wrote down the quote so I wouldn’t forget it.

Later on today listening to Terry Gross interviewing Tom Waits on NPR, I wrote down something he said — tongue in cheek — that really struck me, “Life is just the dead on vacation.” I thought, yes, that’s right, I’m on vacation! For this whole afternoon, it has taken away the bitterness of feeling undead instead of truly alive.

Thank you, sister/fellow pilgrims. I do believe we traverse spiritual paths that have been waiting for us for a very long time.

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MishMash January 9, 2012 at 6:09 pm

There is absolultely nothing new about the Toni’s ideas. This was called Epicureanism back during the days of ancient Greece. Basically, live a simple life, avoid pain, understand your limitations, don’t depend on supernatural powers to save you, and other points. Toni’s basic idea that “life is temporary” and “we will all be food for worms some day” is a useful and wise philosophy for the over-50 patient population. I would NOT inflict this on the teenage/adolescent CFS patient subset however. In this regard, if you don’t have anything hopeful to say, don’t say anything at all.

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