“… No matter what our story, we’re all in the same boat, handling upriver, against the swift current of our thinking.” – Donna Jackson Nakazawa

donna jackson last best cure

Donna went from a healthy, productive woman to having a severe illness overnight

In 2001 Donna Jackson Nakazawa – a journalist and mother – was paralyzed in a sudden onset of Guillain-Barré Syndrome, an autoimmune disease similar to multiple sclerosis. She slowly regained her ability to walk and drive only to be paralyzed by another more serious attack in 2005. Along the way she was also diagnosed with thyroiditis, nerve damage, a clotting disorder, bowel problems, slipped discs, and strange fevers.  Within a few years she’d gone from being able to swim 60 laps to being perpetually worried, exhausted, and in pain.

Having exhausted the usual medical options, and cognizant of studies showing the power of mind-body medicine to affect health, Donna engaged with Integrative Medicine specialist  Dr. Anastasia Rowland-Seymour at Johns Hopkins to bring joy back into her life and hopefully improve her health.  We’ve been following Donna’s progress in a blog series.

In the last chapter, “Playing Catch with Thoughts in Midair”, Donna began the work of transforming negative thought patterns that produce harmful inflammatory products to more beneficial thought patterns that have anti-inflammatory effects.

She’s up against a big, big challenge. It turns out that her tendency towards negative thoughts is not just a product of having a chronic illness – it’s the human condition!

It turns out that our evolutionary history has pretty much hardwired us for fear. Human beings evolved in a dangerous world, a world in which the smallest mistake, the slightest lapse in attention could be fatal. The primitive parts of our brains, the amygdala and hippocampus, scan the environment for anything even remotely negative. When a negative event happens they store it in our memory cells. Once a similar situation presents itself they call the alarm – a reflex that occurs with blistering speed.


Missing the tiger in the woods could have been fatal – back then…

The branch above your head cracks and you react before you think. A big insect alights on your arm and you react before any thought to brush away. Something happens that reminds your brain of a negative situation in the past and the amygdala pumps out stress chemicals, stiffening you up for a fight.

When that’s happening, the analytic part of the brain – the prefrontal cortex, the part that allows us to rationally consider situations – is bypassed. Since the brain is more focused on survival than happiness, happy events are given less weight in the brain’s retrieval system. Given the choice between interpreting an event in a negative or positive fashion, nine times out of ten it will remember the negative aspects of that event.

Engage that stress response system enough – wear those neural grooves deep enough – and your primitive brain – what some call your “lizard brain “ – will respond to virtually every situation as a threat.   Some people call this an “amygdala hijack”.


We may be out of the jungle but our brains aren’t – they still see tigers everywhere

Many of these alarms are surely what Rick Hansen, the author of Buddha’s Brain: the Practical Neuroscience of Happiness, Love and Wisdom, calls “paper tigers” – threats that appear real but aren’t. The hard work lies in halting the process and determining what is really a threat and what isn’t.

“We need to help ourselves see the world clearly, not ignoring the actual threats that are out there, but waking up from the paranoid trance that thinks it’s always Threat Level Orange.” – Rick Hansen

As the mind scans for threats it misses the small beauties that are all around us – the opportunities for appreciation and gratitude – that determine the quality of our lives.

An ME/CFS/FM Reflection

For me personally this kind of automatic scanning or hyper-alertness for threats – the inability to relax, the tension, and the remarkably strong physical response to even small “threats” – has been with me since I got ME/CFS and FM.   Little things I would have never noticed before cause not just upset but physical distress and pain.  My body seems almost like a tuning fork for stress; it lacks resilience – it can get thrown – not completely out of whack, but at least momentarily sidetracked –  by the smallest of things.

prefrontal cortex-chronic-fatigue

“Prefrontal cortex (left) ” by Database Center for Life Science(DBCLS)[2]. – Polygon data are from BodyParts3D[1]. Licensed under CC BY-SA 2.1 jp via Wikimedia Commons

Whether it’s caused by low blood volume, my body trying to get rid of a pathogen, toxins, neural inflammation, or just general depletion I don’t know, but the fact is that it’s there, and it’s not pleasant.

Consider the possibility that people with disorders of central sensitization such as fibromyalgia and chronic fatigue syndrome may be particularly vulnerable to this problem. Not only are they hardwired as humans to distinguish threats, but they have some extra biological wiring to deal with as well. Several studies, for instance, suggest the prefrontal cortex has taken a hit in chronic fatigue syndrome.

This scanning for threats is so pervasive – we are so embedded in it – that we hardly know it’s there, but it’s responsible for the fact that, even when we’re healthy, states of true joy and love are rare.  We weren’t necessarily consumed with fear, but moments of true joy, intense happiness and contentment were rare, and the doubts, fears and concerns were always grinding away underneath, threatening to pop up at any time.

If that was how it was then think how much more this pervasive tendency towards negative interpretations must, as a matter of course, take hold when you’re suffering from a chronic illness – and how much more work you need to do to remove them.

catastrophic thoughts

There they were – those catastrophic thoughts…A time out largely cleared them out.

On a recent dog walk in isolated rural area one of the dogs disappeared. It was not terrain I would have thought he would have gotten lost in  – so I was confused. As he failed to respond to my calls the catastrophic thoughts started to sneak in. He had fallen off one of the small cliffs in the area.  He had gotten hit by a car (roads were quite distant). Someone had come along and picked him up (it was very isolated!). He had been shot by a rancher (no gun shots). Finally I sat myself down, took some deep breaths (engaged my prefrontal cortex), and it became very clear that the only thing that really made sense was that he had, the easy terrain notwithstanding, simply gotten lost.  Two hours later he showed up.


The question is: it possible to experience joy and contentment while your body is ill?  That’s a monster of a task, but Donna believes it’s possible and she’ll continue working on that in the next chapter.


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