“… No matter what our story, we’re all in the same boat, handling upriver, against the swift current of our thinking.” – Donna Jackson Nakazawa
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.
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”.
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.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.
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.
- Check out the Last Best Cure Blog Series here
I first noticed there was something missing in me when I was at my grand daughter’s school luncheon. The lady sitting across from me was laughing and I realized in that moment I had not felt genuine laughter since becoming ill. That true content and joy is gone, sad but true. I went out yesterday to an art studio to be in the atmosphere I love so much and got involved with a project and I can’t say that I was feeling genuine joy or happiness maybe a little contentment because I was in my element. I’m now paying for that little piece of fun I had with pain and fatigue today and probably will for a few more days – not to sound negative. It’s the reality of the illness.
Its a real challenge to bring joy and contentment to something, or find joy and contentment when you’re ill. What a challenge that is! What a win it would be if you could do it….
A lack or disturbance of serotonin would take the fun/energy out of most things..
As my brain is regaining function I sometimes feel like a hippie, thinking stuff like “oooh what a pretty flower and look at the light that falls on it!” with a silly smirk, of course.
Miller’s research suggests that dopamine is down too – and that rewards are not so rewarding anymore! Dopamine plays a big role in prefrontal cortex functioning as well…
I think we completely overlook the gut brain……and the gut brain connection. If the gut were actually healthy, there wouldn’t be a problem. Perhaps there are a subset that are extremely gut sensitive but that’s my only conclusion after 40 years with this disease.
Could very well be…Esther’s depression lifted after she took Xafaxin. I’m clear that something physiological is pushing the over-reactions and the difficulty settling down..
Thanks for another good and provocative article, Cort. My own experience resonates with regard to the inappropriate and out of proportion reaction to relatively inconsequential stressful thoughts. But it’s not just an inappropriate reaction to thoughts – it is other stressors to such as cold, heat, pathogens and exercise etc. Accordingly, I think with this line of thinking the logic has to encompass a broader malfunction – that being an impairment of many of the body’s control systems. So the question for researchers is what can affect all these control systems in this way?
Agreed! It’s stressors in general and exercise is obviously a huge one…Foods are there too. Chemical sensitivities…food sensitivities…over-reactions to drugs – the pattern is too broad for it not all to be connected.
Oh and with regard to the basic stress of existence stemming from the reptilian brain, I have heard this referred to as Ontic Anxiety. In my own journey I have found meditative breathing to be only marginally helpful in dealing with this and, as your article suggests, it seems the inappropriate reaction increases over time without occurrence of increasing or particularly significant stressors(!)
of course it is possible to find joy and contenment when ill, but usually from finding that joy in other people. You can focus on what you still have rather than what you have lost. However the idea that it will reduce inflammation and make you well I see as poppycock and the sort of b******t thinking that prevents proper investment in finding real treatments. Maybe it will have some small effect but rituximab or low dose naltrexone have far more promise.
When anyone is said to have “exhausted the medical options” I always wonder just how much they have tried and what they have not had the energy to fight for,
You might want to check out Younger’s PANDORA webinar. He specifically notes that stress increases microglial activation (neuroinflammation) and one of the things he recommends is meditation/mindfulness to turn down the inflammation and the production of sickness behavior by the brain.
With regards to what Donna has tried. After she came down with her autoimmune disorder she wrote called the Autoimmunity Epidemic http://www.amazon.com/Autoimmune-Epidemic-Donna-Jackson-Nakazawa/dp/0743277767 which has a chapter on rethinking the effects that diet, supplements and other factors including emotions have on our immune health. So yes – she’s looked in all different areas – tried many drugs and supplements – and she was still in bad shape physically and emotionally.
It was only after that she turned to this approach. I can tell you that by the end of the book – things have definitely changed for Donna. She is not healthy – nobody is suggesting that her autoimmune disorder to going to go away – but her health – as eivdenced by her lab tests and her functionalitiy is significantly improved.
“Those who say it cannot be done should not criticize those who are doing it.” is a quote from my favourite collection on one of my blogs, tatt.
I might suggest that even the placebo effect has been found to have a profound effect on some people’s healing.
I too have wondered just how much someone has tried when stating that they have “exhausted the medical options”, but having had chronic pain for over 34 years and a plethora of other serious health conditions in the last 20 years, I firmly believe that nearly all people with chronic debilitating pain and fatigue (e.g. ME/CFS/FMl), have generally tried anything and everything in an effort to recover their former health and life.
It’s the newly diagnosed, or recently ill, that may have sought a minimum of treatment options and not realised that they were in for a long-running health condition that might require extensive diagnoses by a range of specialists and testing.
It took me many years to realise that none of us can live in the shoes of another. We are all unique and must follow our own healing journey with whatever tools we may find helpful along the way – orthodox western medicine, alternative eastern therapies OR…….just plain old Power of the Mind and Positive Thinking.
I’m not suggesting we can all Think Ourselves Well. I am suggesting that each of us needs to find the Key to unlock our Door and Open our Minds (to possibilities).
Donna’s book with its scientific explanations has really reinforced my lifestyle and pacing/rest/meditation techniques. Understanding how things work gives me an even better reason to consistently adhere to practices, rather than just knowing that something seems to work for me.
Gut health is very important for me. Two years ago I had a striking improvement in my moderate ME when I started making my own yoghurt. I made mine with soya milk and soya yoghurt starter but no doubt other milks would do.
The difference seemed to be enough to really reduce the fatigue I felt. The sensations of state of being tired rather than fatigued was more than a subtle difference and I rejoiced in it.
I’m struggling with the aftermath of two viral attacks over the Christmas season, and now a cold but feel sure that I will regain that improvement again. I’ve learned a great many helpful pacing techniques, mostly from Bruce Campbell’s CFIDSSelfHelp courses and my fellow students there. Thus I have lots of aspects of understanding and control over my symptoms. Over a period of time some environmental ones have nearly faded completely away.
I feel that we must have different sub-sets of this dratted illness. I’m lucky, I don’t have fibro and am not an anxious person. For me joy is certainly possible, made easier because of my personal circumstances.
The visualization part of the Amygdala Retraining stopping negative thoughts technique made, and still gives me a feeling of contentment and in some strange way power to block and counter negativity.
Whatever,11 years in, I am both happy and hopeful. I know how lucky I am.
Congratulations Suella 🙂 That’s quite a feat….Over time my environmental symptoms, while still present and still an issue, have diminished markedly since their rather horrific heights as well .
I think a sense of humour is vital with this disease. I have often been assailed by depression and got help for it, but laughing at silly things with my English wife and her quick-witted humour has been a Godsend. Here’s an example. We were walking to my car and she asked what colour it was:
Me: “The book says Gobi”.
Her: “So what’s his name then, Genghiz Kar?” 🙂
A great help, that!
I had been meditating regularly in a sincere way for a very long time before I got ME (about 20 years in total, started about 12 years before ME), and I still do. I’ve never had anxiety, panic attacks, depression or anything like that. I have no problem finding joy, happiness and contentment in everyday life, despite being very severely affected. However, I have no idea if my meditation practice has had anything to do with that or not… It definitely has been a great help in finding acceptance, coping with stressful situations, getting deep rest when sleep wouldn’t come etc. It hasn’t made me any less sick, though.
This can’t be stressed enough: It hasn’t made me any less sick.
From the Cort’s article: “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.”
I wonder how many people who have gone on to develop ME/CFS would also consider themselves to be introverted. It’s a trait that people are born with, and it’s encoded into our genes and neurophysiology. Introversion is not the same thing as shyness and it’s not that introverts don’t like people. Being introverted means that you have higher levels of certain types of brain arousal and are more sensitive to some kinds of stimuli. When introverts are stressed they withdraw. They do this in order to recharge their batteries. If they are denied alone time the results are exhaustion, depression and anxiety. Introverts have more brain activity in their frontal lobes than extroverts, which can be seen on brain scans. Introverts, also have a higher baseline for internal stimulation, thereby making them more sensitive to external events. Their fight-or-flight response is more sensitive to stress and always turned on.
Born extroverts, on-the-other-hand, are chronically under-aroused and bored and are therefore in need of higher levels of external stimulation to be placed on high-alert. Also, the reward system, in the brains of extroverts, that allows them to experience joy and contentment responds positively to stimulation linked to dopamine. Extroverts are blessed with an abundant amount of the neurotransmitter dopamine, but this is not the case for introverts. Introverts don’t experience the same feeling of reward from similar exciting or stimulating events and often have to seek out down-time to lower their stress and over-stimulation levels. I believe it is harder to experience happiness when you are suffering from ME/CFS because of biophysical differences found in the brain, that make you more vulnerable to the effects of stress.
I wonder if the dopamine problems that Miller’s results suggest are present in ME/CFS and which affect the reward section of the brain – are turning former extroverts into introverts?
I don’t think so Cort I am an extrovert and I desire to create because it is stimulating and the rewards are satisfying so when I’m unable to accomplish this I’m become moody and am not enjoying life. I suppose the trick is to find joy in doing things that are creative in a less strenuous way than I did before I became ill – so it’s an adjustment situation but yeah I seem to act more like an introvert now but I don’t like it! I want MY life back 🙂
great info and comments here, too tired to add mine – but love it – thanks all x