About a decade after being struck by an autoimmune disorder, Donna tried a new approach
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.”
Angry, self-judging ‘tapes’ have been hammering at Donna every time things go bad.
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.
One practice Donna will do is to use a mental speedometer to assess the speed of her thoughts
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.
Transforming into a beautiful butterfly. I love you sharing your self awareness.
Issie
You know what emotion really shows up for me – as I go labeling my mental states – fear! I’m surprised at how much it shows up for me – and it really does help to label it.
Yes, that’s a biggie. As we acknowledge our fears we expose our soul which brings its own set of fears. We have to break that fear or we can never push ourselves into another place of being. That could include being “stuck” in unwellness.
I’ve recently been listening to a guy about mind/body connection. I’m not sure I completely agree with everything he says but it sure makes a lot of sense. He has so many videos out I will just give his name and you can watch what you choose. His name is Dr. Bruce Lipton. One of the doc’s that helps others with methylation issues has his patients listen to this guy before they start trying to correct that function. He feels its not all genetic with tweaks with epigenetics being the solution. It also involves environment and life experience and how we process those things causing a physiological response. It goes back to one of my favorite quotes from Anais Nin: “We don’t see things as THEY are. We see things as WE are.” We base things off of our own perception of things. Not necessarily how things truely are.
Issie
Thank you Issie : )
Dr. Broderick proposes that our entire systems have been “re-set” by virus or trauma and that it is in need of another “re-setting”. This article reminded me that, though there is no guarantee, we can work from our conscious end to try to re-set all the negatives that have come with having CFS/ME. I know I’ve struggled with deep feelings of unworthiness since becoming ill which likely I was carrying inside for many years prior as Tara described. Being deliberate and mindful of our own thoughts and making any and all attempts to correct our negative belief systems surely would help contribute toward wellness in both a psychological and physiological way. Trying to stay in the moment is another way that I’ve found to keep my mind in check.
It can only help, I think, to find a way to reduce the extraordinary stresses that come with a) a chronic illness and b) a chronic illness in which boxes axes of the stress response- the HPA axis and the autonomic nervous system – are involved.
I was struck by the idea that these conversations about ourselves and others particularly show up when we’re under stress.
I really loved Tara’s statement that when you’re in the now it’s so much easier to handle the pain, the fatigue, whatever else is going on. That certainly fits my experience. Those things become less intrusive, less painful.
Thanks!
It is important not to make the practice of mindfulness into just one more thing we use to get something, like better health.
Right – that’s a key – using mindfulness or meditation to get somewhere really doesn’t work very well. Doing mindfulness in order to do mindfulness does on the other hand work pretty well.
We need to find the reboot switch.
In Toni Bernhard’s book How To Be Sick, she references Byron Katie’s The Work which asks the question is it true. Byron Katie makes the statement that you can fight reality all you want and you’ll only lose 100% of the time. In the 12 step programs, a famous quote from one of the stories is “acceptance is the answer to all my problems today.” When you accept reality, you find peace.
As we all know, It is easy to accept reality when life is giving us what we want, we’re getting our way and our experience is pleasurable. When life is giving us what we don’t want or withholding what we do want, we experience pain which we struggle with to avoid, escape and distract ourselves from. As long as we divide the world up between what we like and what we don’t like, we are living from our egos and are doomed to suffer. Acceptance of what is is only the first step to peace.
The real challenge in the spiritual life is to go beyond mere acceptance of what we don’t like to a celebration of all reality which leads us beyond duality, dividing everything up into likes and dislikes and celebrating the miracle of being alive with each inhalation and exhalation in the present moment.
To do this, we have to stop running away from the pain we suffer, sit with it, name it, breathing it in and out and embracing it as our own.
For 28 years, I’ve done anything and everything I could think of to avoid facing reality. I’ve done everything but accept it, sit with it, name it and celebrate that this is my life and, as Thich Nhat Hanh says, every breath is a miracle. So now I’m going to try that.
What a wonderful comment Esther and how insightful that we embrace the realities we like and try to shove away the realities we don’t.
I love this quote “you can fight reality all you want and you’ll only lose 100% of the time.”.
I’ve been using a practice that there’s no such thing as right or wrong. There’s no way things should be or shouldn’t be. There’s just the way they are. Reminding myself of that has helped many times…:)