About ten years after being struck by an autoimmune disorder, science journalist Donna Jackson Nakazawa realized that, while traditional approaches (drugs) had kept her alive, hers was nevertheless a rather joyless, difficult existence. Recent studies suggested that mindfulness practices might be helpful in several ways, so she turned to them not just to bring back the joy in her life but hopefully to improve her health as well.
This is the sixth in our series of blogs following Donna’s journey.
In chapter five of The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life Donna starts digging into the practices she’s going to use over the next year to calm her ‘reactive’ mind and return joy to her life.
As part of her homework Donna read Radical Acceptance by Tara Brach, a therapist leader in the mindfulness movement afflicted with health issues herself. In her book Brach asserts that people in the Western cultures, in particular, are afflicted deep down with a sense of unworthiness – a sense that something is wrong with them.
[This is a concept that permeates the work of Landmark Education, a company focusing on giving people tools they can use transform their lives – that I’ve participating with on and off for quite some time. They posit that when we’re quite young every last one of us decided that something was wrong – really fundamentally wrong– with us.]
Looking at our childhood it isn’t surprising that we inevitably come to this conclusion. We live, after all, in a world in which we’re constantly making mistakes and being admonished for doing things wrong. At some point, if Brach and Landmark is right, we decide something really is wrong – but with ourselves. Brach calls this decision or this judgment we pass on ourselves a “primal belief”.[Landmark Education proposes that we decide at this critical point what we need to do or be in order to be ‘right’. Then we forget about that decision or judgment and live out the consequences of being someone with whom something is deeply wrong. No matter how far we go, no matter how much we excel at something, it’s never completely satisfying because it’s all done on top of this fundamental decision made when we were young – and forgot about.] [That sense of internal wrongness shows up in our being agitated over little mistakes we make, in our playing it safe – not doing things that expose our ‘wrongness’ – and in feelings of unworthiness that show up when bad things happen, even when they’re not our fault.]
There’s no pretense at rationality here. Remember, this is probably a five year old calling the shots. Consider the possible ‘wrongness’ we surely attach at some level to getting ill. Wouldn’t a five year old conclude that something is fundamentally wrong with them on a personal level? Wouldn’t he or she feel isolated, different, and just plain ‘wrong’? .
It turns out that even Tara, therapist and mindfulness expert, has trouble dealing with the ‘wrongness’ of illness. Not wanting to be ‘defined’ by her illness (a genetic connective tissue disorder) she pushed too hard and ended up in the cardiac unit in the hospital. Even an accomplished therpist/meditator can be so sucked into pushing away her illness – so worried about the negative connotations of being defined by it – that she ends up in the hospital.
True Refuge: Tara Brach on Using Mindfulness/Meditation Practices to Deal With Her Illness
As Donna looks below the surface of her always-busy-assessing-and-planning mind she hears a darker voice – a judging, self-lashing critique that shows up when things aren’t going well – and how often are things going well now? That critique (Landmark Education would call it “It”) blames her for everything – even for getting ill.
It’s saying, “You’re always tired. What the hell is the matter with you? You always have some impediment… you never get enough work done and you’re always behind. No wonder you have the lemon body – you deserve it… You’re a loser.”
This “tape” shows up and plays again and again when things break down, and in Donna’s world with her health issues of fatigue and pain they’re breaking down all the time. That tape is running a lot.
Donna hadn’t been aware of it because she hadn’t developed the practice listening for it; she’s just been left with it’s aftermath – feelings of anger, frustration and depression that flood over her causing her increased pain and fatigue.
Her negative ‘tapes’ were undoubtedly strengthened during the major trauma of her life – her father’s death when she was fifteen – which she was essentially left alone to face. But we all have these ‘tapes’. They come with being human, and they show up big time in the stress of being ill.
Donna’s homework is to look back into the past and try to determine what decisions, what angry conversations, what ‘tapes’ she started playing about her world when things really went wrong.
The first step in mindfulness meditation (with its origins in Buddhism) is always bringing awareness to a situation. She is asked, in a nonjudgmental and self-compassionate way, to do the following:
- Take note of the speed at which the conversations in her head are running and give a number to her mental speedometer. Are they running at 100 mph or 75 or 20 mph?
- See the mental churning as simply a “habit of mind”. It’s not good or bad; it’s simply part of the package that comes with being human, and we all have it.
- Give a name to those rapid-fire thoughts. (Donna comes up with “mental spitting, fuming and churning”.) When they occur, label them.
- Ask herself if she is judging herself: Is she getting down on herself for thinking these bad things about herself or others? If she is judging herself, then she is to place a word in her consciousness to counteract the judging. The word she chooses is ‘forgiven’ and she’s asked to paste the word on sticky notes and scatter them around the house.
Right now, when thing go south, these internal conversations are running her life. She’s battling against them, for sure, but the battle itself is exhausting. Simply naming their characteristics allows her to deemphasize them and causes their grip to loosen. They are, after all, simply characteristics of the mind.
Back at home she digs into the science of giving a name to her negative thought processes and repeating a word like forgiven when they come up. It turns out that studies indicate looking at an angry face causes our amygdala – the fear center of the brain– to activate, sending stress hormones and inflammatory cytokines coursing through our body. But looking at an angry face and then labeling it as “angry” not only causes the amygdala to settle down, but causes a different part of the brain – the prefrontal cortex – to activate.
When the participants in the study began labeling their emotions and found the same process going on, simply labeling and naming negative thoughts changed the way their brains operated.
Interestingly, several studies suggest the prefrontal cortex has gotten a bit beat up in ME/CFS. One Japanese research group hypothesizes that prefrontal cortex problems play a key role in the production of fatigue.
I started the practice of inserting “It’s OK” or “I’m OK” in the midst of these judgmental thought processes, and I was very surprised at how simply inserting that command changed my outlook. It was not until I did that that I realized how often “I” (or rather “it”) was beating myself up. Intellectually I knew I was OK, but below ground a steady undercurrent of ‘not okayness’ was sniping away.
“It” was also ascribing all sorts of nasty characteristics to other people – people I didn’t even know. “It” was also really adept at telling me that nothing is ever really going to turn out. It seems that I’ve got some nasty stuff going on underneath.I used Toni Bernhard’s “Is it true” practice to see if I was sure these characterizations were true. What a relief to see that they weren’t and to be able to let them go. Along with the change in mood came a lightening-up feeling.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.