My ALS Adventure – Telling My Children

My father would not talk about it even when my mother’s leukemia was far advanced.  She had great courage and accepted that, but her last months must have been desperately lonely. 

It was the same a few years later when my step-mother died of colon cancer.  My dad cared for her physically but he would not talk with her about her fear.  

Englishmen of my generation, too, were taught that feelings are never to be acknowledged.  I’d seen the suffering that creates and wanted to do better for my family.

Nonetheless, while what I wrote at this time about recognizing the imminence of my death was true, my awareness of it was almost certainly more intellectual than I imagined.

March 1 – To my family

I wish I could have seen the Johns Hopkins neurologist in the first place.  She is so thorough and expert.

She says there are three possibilities.  There’s a series of tests where electrical currents and pin pricks are applied to see well how the nerves transmit signals.  Each of the diagnoses has a different profile of test results so once I’ve had those tests we’ll know which one is right.  I hope to have the tests soon.

The possibilities are, most likely to least likely:

  1. Bulbar myesthenia
  2. Bulbar myopathy
  3. ALS – Lou Gehrig’s Disease

The first is a specific form of myesthenia gravis, where nerve receptors lose sensitivity and the associated muscles get a weaker stimulus.  Another form is ocular myesthenia which the neurologist in Maine thought I might have.  Bulbar makes more sense because it refers to the mouth and throat whereas ocular refers to the eyes.

We debated whether to tell you the other possibilities because there’s no treatment for them but I think the best way to live is in awareness that anything can happen, some preparation for disaster makes sense, and we should focus all the rest of our time on living happily.

I will not be worrying about the diagnoses I don’t want. Please don’t you worry either.  I’ll let you know when the tests are scheduled.

March 22 – To my family

We just got back from getting my tests done.

A technician applied voltage with a pen-like device to various parts of the surface of my limbs that were picked up by sensors on the skin in other places.  The results were stored and displayed in graph form on a computer.

Then a doctor applied voltage using a needle that pierced the skin, which wasn’t bad until he poked it up from under my chin deep into my tongue muscle. He had a younger resident with him who applied the needle to my left leg after she observed him do it to my right, and to my left arm after seeing how he did it to the right.  She went deeper than he did 🙁

The doctor then had a technician apply voltage to the surface of the left side of my face.  The technician told us he didn’t know how to interpret any of the results but we might be able to get something out of the doctor.  He suggested we hang around until the doctor finished with another patient.

The only definite thing we learned is the rest of my body is fine.  It feels the same as it always has but it’s good to know it really is all ok.

The doctor would not speculate about what could be wrong, saying these test results showed only mild results and he would need to know more of my history and see my MRI, blood and other test results before he could make a diagnosis.

The doctor who ordered today’s tests will arrange to see us.  Felicity will call tomorrow to get that scheduled as soon as possible.

So, although we were hoping for a diagnosis today, that was unrealistic because the doctor who ordered the tests was not the one doing them.  Nonetheless, it’s disappointing to have to wait longer to know what’s wrong.

March 24 – To my family

The neurologist called.  She says the tests I had a couple of days ago are not conclusive but they do rule out bulbar myesthenia, the one that’s treatable.  It’s likely I’m in the early stages of Lou Gehrig’s disease (ALS) but she will arrange more tests to confirm or change that diagnosis in the next couple of weeks.

Specifically, testing the strength of my breathing will reveal whether my diaphragm is strong.  It is as far as I can tell.  And a spinal tap will show if anything’s there that shouldn’t be present in the fluid around my spinal column.

I’m eager for the spinal tap result to see if there’s evidence from when the brown-tail moths triggered my rash last summer along with the feeling that my tongue was enlarged.  There is, as far as I’ve found so far, no known trigger for the onset of ALS yet my speech and swallowing problem began when I had that allergic response.  Both my neurologist and the doctor who did the tests a couple of days ago dismiss my brown-tail moth rash as a coincidence.  I don’t.

The other reason to be somewhat skeptical about the provisional diagnosis is it relies chiefly on tests done a couple of days ago by a doctor whose specialty is ALS.  We humans tend to see what we expect to see.  ALS is what he expected to see.

But I’m assuming it probably is ALS so I’ve started research.  About 25% of ALS patients start with Progressive Bulbar Palsy (PBP), which affects only speech and swallowing.  They are controlled by the medulla, which used to be known as the bulb.  A drug, Ritulek, is indicated for PBP patients in several articles I’ve read but I haven’t yet explored what it does.  Speech and physical therapy are also recommended, so I’ll resume my speech exercises and get back on the cross-trainer.

Some articles say the life expectancy for PBP patients is 6-24 months, however a doctor at Rutgers has many patients who lived 2-5 years with PBP before it progressed to ALS and some folks, like Steven Hawking, live with ALS for a very long time, 50 years so far in his case.

I mention these numbers so you won’t waste time researching them and because, if there is anything you’d like me to do while I remain healthy, please let me know.

My feelings about all this may change, but a fundamental Buddhist practice is training oneself not just to know intellectually and ignore, but to really feel the truth that every one of us will die and, more importantly, that it could happen at any moment.  I’ve been feeling increasingly okay with that for quite a while now.

Another thing we do is try to act on the truth that every circumstance is an opportunity to practice acceptance.  I was shocked into recognizing that by a fellow student in Kathmandu whose husband had died within three months.  That was only six months before the class and they were both in their mid-30s.  I said I hoped her grief would not be too great or too long.  She said she was not trying to overcome her grief but to learn from it.

That may be the most helpful thing anyone has ever said to me.

So, the diagnosis is not yet definite but the provisional one is likely to be right.  I’ll keep you posted, of course.  Meanwhile, please do not be downhearted.  This will develop however it does and we will all respond well.  Mom says she will treat it as our next big adventure.

March 26 – To my family

Hi again, everyone.  No news, I just want to give you — with permission 🙂 — a reply to my last email:

I’m not sure how to react – or rather, I feel as though there are many different reactions occurring in me but that they’re all almost…subsurface.  Like maybe I could look inward, take hold of any of them, focus on it, and it’d be amplified. 

Naturally, I hope that the actual causes are not as serious as ALS seems to be.  There are many thoughts.  Of how others of us will experience this, if it is serious.  Of what I ought to do, or say.  Thoughts that your calm and accepting views, inspired by your practice, are a stabilizing and helpful influence while discussing this provisional diagnosis, certainly for me and I suspect also for others. 

It’s odd, the provisional diagnosis feels like I ought to think of it with great gravity, but that reaction also feels like clothing that doesn’t fit quite right, like an actor playing the role that’s written for them.  Like that’s how I think I’m supposed to react but the reaction is a story.  I don’t know.  Certainly it’s serious, but as you say, all our lives will end.  I hope yours doesn’t end soon, deeply hope this, but.  It will or it will not. 

The idea that there’s time that could be taken from you and us is only harmful.  There’s no future time that can be taken, only time from the present moment that we can get, all we can ever get is another moment.  A truth my own practice teaches me to accept but not how we instinctively understand things, which maybe is why I feel this strange sense of much movement beneath the surface of my mind. 

Do you also have that sense of confusion?  I do.  Questioning how I should react to this, and wondering how I am in fact reacting?  The last few nights I’ve found myself waking several times, not feeling anxious or thinking about anything and returning to sleep quite quickly, but I usually sleep like a log.  There’s something going on under the surface.

It feels rather like a trip to Nepal.  Perhaps I will recover as mysteriously as I got sick, like if my trip ended for some reason before anything new happened.  But more likely, I’m going to experience things that are new to me.  It will help me to write about them every so often if that happens.  Don’t worry, I won’t write daily!  I hope doing that will be helpful to more than just me, and I hope you’ll chip in periodically with your own reactions, too.

I feel very lucky that we’re a family of good individuals who work seriously at behaving well, and that we each have a way that suits us.

I believe you all know that while training with a form of Tibetan Buddhism and reflecting on quantum physics helps me grow more aware and less selfish, I would never try to persuade anyone else to adopt my method.  I just think it’s good to share how we’re dealing with our feelings and ideas.

Finally, I was especially struck by this:  The idea that there’s time that could be taken from you and us is only harmful.  There’s no future time that can be taken, only time from the present moment that we can get, all we can ever get is another moment.  That is so right.  I enjoyed transplanting three shrubs this morning and, assuming I get more moments tomorrow, I shall enjoy transplanting three more then.

My ALS Adventure – What is ALS?

What is this malady of mine, Amyotrophic Lateral Sclerosis (ALS)?  I’ve researched it not to find a cure — none is known at this time — but so I don’t waste time on what cannot be a cure.

ALS is a progressive neurological disease in which motor neuron cells deteriorate and die.  Motor neurons send signals from the brain (upper motor neurons) via the spinal cord (lower motor neurons) to muscles throughout the body.

Motor neurons control all voluntary muscle movement including walking, talking, chewing and breathing.   As the signals they send grow weaker, the muscles they control waste away until at last the brain can no longer initiate and control voluntary movements.

Different groups of muscles are controlled by motor neurons in different parts of the brain (see illustration below).  About 70% of patients first develop symptoms in their arms or legs.  About 25% first notice speech or swallowing problems (bulbar onset) — I’m one of those — and about 5% start with symptoms in their trunk.

No matter where the first symptoms appear, the great majority of ALS patients end up losing function in all muscles.  We lose the ability to speak, eat, move, and even breathe.  Most of us die from respiratory failure, usually within 2 to 4 years, although about 10% of us survive for 10 or more years.

The literature says all ALS patients develop symptoms throughout their body but the chief neurologist I met at Lehigh, PA who has worked in the field the longest told me that’s not correct.  Some patients with bulbar onset ALS do not develop symptoms in other muscle groups.

Up to 10% of ALS patients inherit it from a parent via mutations in any one of over a dozen genes.  The remaining 90%, of which I am one, are believed to have a genetic predisposition to the disease that is activated by an environmental factor.

Genes are contained in chromosomes located mainly in the cell nucleus.  Every chromosome contains hundreds to thousands of genes and every human cell contains 23 pairs of chromosomes.  We have about 20,000 to 23,000 genes all told, around 400 random ones of which are, on average, defective in any one of us.

The entire structure and function of our body is governed by the proteins it synthesizes and that operation is controlled by genes.  Proteins are both building blocks for muscles, connective tissues, and other structures and they also, in the form of enzymes, carry out nearly all chemical processes within the body.  Our body produces thousands of different enzymes.

Our genetic system is highly complex.  Its operations incorporate error-correction mechanisms but it can go wrong with an enormous variety of results.  It amazes me it works at all!

How might errors (mutations) occur?  They can occur spontaneously.  When a cell divides, for example, it makes a copy of its DNA, the molecule that carries the genetic instructions controlling its operation.  Sometimes the copy is not quite perfect.  Environmental factors such as radiation, chemicals, bacteria and viruses can also cause DNA to break down and when it does, the cell may not repair it perfectly.

How does the body defend against environmental risks carried in the blood?  The walls of the blood vessels in the human brain are high-density cells that limit what substances can pass from the bloodstream to the brain more than the cell walls of capillaries do elsewhere in the body.

Severe inflammation such as I had in reaction to the Brown-tail Moths can temporarily weaken the bond between those cells making them a less effective barrier.

We know far more about how our genetic system works than we did even ten years ago but not yet enough.  Western medicine has no cure for ALS because its cause or causes are at this point still a mystery.  The only existing medication that slows its progression extends life by only a couple of months.  I take it.

Motor neurons are different from other cells because the genes that govern their operation are different.  Restoring their operation is not a matter of developing a drug to kill an external attacker such as a bacterium.  We’re not dealing with something that moves from one group of motor neurons to all others.  An environmental factor is triggering a change in our motor neurons’ genetic programming.

Curing ALS will require correcting the motor neurons’ genetic programming.  This December 10, 2017 report describes a potential approach based on CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats), a naturally occurring bacterial defense system.

CRISPRs are repeating sequences of genetic code interrupted by “spacer” sequences – remnants of genetic code from past invaders.  The system of which they are part serves as a genetic memory that helps the cell detect and destroy invaders when they return.

CRISPRs can be programmed to target specific stretches of genetic code and edit DNA at precise locations, thus permanently modifying genes in living cells.  The first method to engineer CRISPR to edit the genome in mouse and human cells was published in January 2013.

In its current form, CRISPR isn’t technically gene therapy. Rather than replacing a diseased gene with a good one, it goes into the nucleus and directly cuts out faulty genes.

Meanwhile, since there is not yet a gene therapy for ALS, I am taking a treatment that has cured a significant number of MS patients and more recently, a number of ALS patients, too.  It is based on the idea that the body can, if treated in the right way, heal itself.

The treatment was developed by a doctor of Tibetan medicine who, earlier in his career, was sent by the Dalai Lama to reestablish Tibetan medicine in Mongolia and who is now based in San Diego, CA.  I am receiving this treatment from the first Westerner to qualify as a doctor of Tibetan medicine, a truly amazing achievement.  Her mentor is the Tibetan doctor who developed the treatment.

I will add comments to this post as I learn more about ALS.  I knew little about biology eighteen months ago and would be very grateful for comments by anyone who can correct or add to what I’ve learned so far.

My ALS Adventure – June 2016 to April 2017

I didn’t choose this as I did the experiences I learned so much from in business and trekking in the Himalayas but it is just as much of an adventure, a powerful opportunity for learning.

I hope my trip reports from this adventure will help others with ALS, those who care about them, and perhaps medical professionals.  The progression of symptoms is detailed enough to be useful to researchers.  How I have remained happy may be helpful to fellow patients.

These reports also benefit me in the same way as writing monthly status reports did in business.  They help me reflect.  It’s impossible from day to day to get an accurate sense of important changes that only become visible when you gain altitude.

This post tells how my symptoms progressed toward a diagnosis.  Next I’ll post about the nature of ALS.  Subsequent posts will be based on emails to family, friends and my doctor.

I’d prefer to write after I regain health as I did about depression.  There would then be no risk you’d be distracted by sympathy, but Western medicine has no cure for ALS.

I am receiving care from a wonderful Tibetan doctor who has cured other ALS patients but we can’t know if the treatment will work for me, which points to the overwhelming lesson from this journey — if I don’t write now, I may not have the chance to do so later.

So please, whatever is the most important thing you can do with your life, do it now.

Enough preamble.  Here’s what happened up until my ALS diagnosis nine months ago.

My symptoms began in mid-June 2016 when I was working under oak trees in Maine.  Their leaves were being eaten by Brown-tail Moth caterpillars to which many people are allergic.  An itchy rash developed on all my exposed skin and my tongue felt enlarged.

The rash was gone after two or three days but my speech was slightly slurred.  I could curl my tongue so it seemed I had not had a stroke.

My slurred speech was a bit worse after about three weeks, too long for an allergic reaction to be the explanation, so I went to my primary care doctor who ordered blood samples and a brain MRI.

The MRI showed no structural damage to my brain.   We got the blood test results by phone and were told they indicated tick-borne disease.  We didn’t think to ask which one and the doctor’s office could not locate the results later but I was put on a three week course of antibiotics.

At the end of the three weeks, July 26, about six weeks after the first symptoms, my speech was worse and my tongue felt weaker.

I was then examined by a neurologist.  She detected double vision when I look toward the upper left.  I wasn’t too surprised because I also get double vision if my head gets very cold in winter.  The neurologist ordered an ultrasound for blood flow on both sides of my neck

The ultrasound results were normal.  On August 16 the neurologist ordered more blood work.  Everything was fine except for my usual high cholesterol.  The results for tick-borne disease were negative.  She ordered an MRI for blood flow in my brain.

My brain blood flow was normal.  On August 30 the neurologist prescribed pyrostigm because my symptoms could result from ocular myesthenia.

The pyrostigm had no effect by September 7.  I had been doing very heavy physical work and driving 11+ hours back and forth between Maine and Pennsylvania so I wondered if the medication had not had the right conditions to be effective.

The neurologist said I must have had a stroke that left no trace in the structure of my brain.  She ordered a barium swallowing test which I took on September 16.  No problems were detected.

We moved to Gettysburg, PA and on November 3 I visited a new primary care doctor who prescribed speech therapy.

After three weeks of speech therapy that taught me to articulate more deliberately but left my tongue weaker and my speech worse as I tired, the therapist told me to stop the exercises and recommended consulting another neurologist.  The exercises would have been beneficial if I’d had a stroke so she believed it must be something else.

It was now early December, almost six months since the first symptoms.  My speech was continuing to deteriorate, swallowing was growing more difficult and my nostrils kept getting blocked.  We scheduled a consultation with a neurologist at Johns Hopkins Hospital but it would not be until March 1st.

I went to Nepal for Tibetan Buddhist teachings for six weeks right after New Year’s day.

By the time I returned in mid-February, eating had become a struggle.  It was hard for my tongue to maneuver food between my teeth, food was getting stuck in my cheeks, and it was hard to avoid biting my cheeks when I chewed.  There was no problem with jaw movement and I could swallow food without difficulty but I could take only small sips of liquid and I would sometimes gag which led to coughing fits.

On March 1, 2017 the Johns Hopkins neurologist said my symptoms indicated either Bulbar Myesthenia, Bulbar Myopathy or Lou Gehrig’s Disease (ALS).  She ordered an EMG with Nerve Conduction Study.

The EMG was performed by a different Johns Hopkins doctor, one who specializes in ALS, on March 22.  The sensory conduction showed reduced right ulnar sensory amplitude (the ulnar nerve runs from the neck to the hand and is our largest nerve unprotected by muscle or bone so injury is common), the motor conduction showed reduced velocity across the elbow segment of my right ulnar nerve, repetitive nerve stimulation was normal and needle EMG showed neurogenic changes limited to the right side of my tongue.  No weakness was detected anywhere else in my body.

Two days later (Mar 24) the first neurologist called to tell me the EMG ruled out Bulbar Myestenia and her colleague had diagnosed ALS.  She ordered a test of the strength of my diaphragm and a spinal tap that would include tests for Lyme Disease because Lyme can cross the blood-brain barrier when there is inflammation as there had been in my reaction to the Brown-tail Moth caterpillars.

On April 7 my speech was very indistinct after a week of very hard work outside.  I rested for a day and my speech was clearer the next day.  My tongue felt less weak but my lips were always weak so I dribbled.  I could still swallow food without difficulty but I hesitated with liquids.

I had the pulmonary test, spinal tap and a consultation with the ALS neurologist on April 10.  He said we had eliminated every other possibility so I definitely have ALS.  Weakness spreads to all muscles of most ALS patients and they die, usually from breathing problems, within a couple of years.

This is long enough for one post.  I’ll describe what happened next in future chapters.

It’s worth noting now, though, that in the eighteen months since my symptoms began, I have experienced no weakness in muscles other than my mouth and throat.  That means I may be one of those whose symptoms do not progress.

The Wall


I love Pink Floyd’s “The Wall”, Trump’s is absurd, and this is about a different kind of wall altogether.

A Zen Buddhist was about to teach a class of six-year-olds meditation.

One of the boys asked: “Does meditation open your Third Eye?”

“Not exactly” the teacher replied.

“Does meditation teach us to levitate?” the boy asked.

“Not exactly.”

I’ve heard,” the boy said, “that meditation teaches us to walk through walls.”

“Yes, it does.”

“But what happens if you lose your meditation while you’re in the wall?”

“You get stuck.  It happens to me all the time.”

[Hat tip — Anam Thubten]

Innocence, Habits and Donald Duck


We recently remembered 9/11/2001.  We do not, however, remember 9/1/1973 when General Pinochet overthrew Chile’s popularly elected government with our very active support.

Why do we remember only when we were the victims, not when we were the perpetrators?

Ariel Dorfman reflects on that in A Tale of Two Donalds and his conclusion, “We really don’t have to leave this world as it was when we were born”, got me thinking.

Some preamble:  Why did we help to overthrow Chile’s government?   Because the Chilean people had for three years been working to build socialism via the ballot box and our leaders were afraid they might succeed, inspiring the same thing to happen here.

The focus of Dorfman’s book was Donald Duck because: “If there was a single company that embodied the overarching influence of the U.S. — not just in Chile but in so many other lands then known as the Third World — it was the Walt Disney Corporation.”

What was symbolized by Disney’s Donald Duck world?  “a belief in an essential American innocence, in the utter exceptionality, the ethical singularity and manifest destiny of the United States … the inability of the country Walt was exporting in such a pristine state… to recognize its own history”.

What history did we not recognize?  What, as Dorfman puts it, was our sin?  “[our] violence (the enslavement of blacks, the extermination of natives, the massacres of striking workers, the persecution and deportation of aliens and rebels, all those imperial and military adventures, invasions, and annexations in foreign lands, and a never-ending complicity with dictatorships and autocracy globally)”.

Why is Dorfman writing now about what happened almost half a century ago?   Because, he says:  “We are clearly in a moment when a yearning to regress to the supposedly uncomplicated, spotless, and innocent America of those Disney cartoons, the sort of America that Walt once imagined as eternal, fills Trump and so many of his followers with an inchoate nostalgia.”

Now here’s what struck me.  The innocence Disney conveyed is real.  At the same time, the violence, selfishness and greed that Dorfman points to are also real.  How can both be true?

It’s because, in the Buddhist understanding of existence, our intrinsic nature is good; we behave badly only out of habit.

What happens is, our mistaken acts accumulate into conceptual and emotional habits, then our behavior is governed by the things we always think and feelings we always have, not the unique circumstances in each moment.

Buddhists call all that programming karma.  We call the habits we share our culture.

By observing people who have studied, reflected and done Buddhist practices for long enough, we can see they are not on auto-pilot.  They are naturally kind.  The Buddhist understanding of our nature is confirmed by observation.

Buddhism is not the only way to overcome bad habits, of course, and Buddhist leaders in Myanmar are currently exterminating their Muslim Rohingya population.  We first need the right motivation, then whatever way works to train ourselves out of selfishness, greed and violence.

One of our greatest warriors was especially clear about making the right choice.  Three months into his first term President Eisenhower gave this speech:

“Every gun that is made, every warship launched, every rocket fired signifies, in the final sense, a theft from those who hunger and are not fed, those who are cold and are not clothed.  

“This world in arms is not spending money alone. It is spending the sweat of its laborers, the genius of its scientists, the hopes of its children.

“The cost of one modern heavy bomber is this: a modern brick school in more than 30 cities. It is two electric power plants, each serving a town of 60,000 population. It is two fine, fully equipped hospitals. It is some fifty miles of concrete pavement. We pay for a single fighter with a half-million bushels of wheat. We pay for a single destroyer with new homes that could have housed more than 8,000 people.

“This is not a way of life at all, in any true sense. Under the cloud of threatening war, it is humanity hanging from a cross of iron.”

Why did we not heed Ike’s words, or his warning eight years later about our emerging military-industrial complex?

And why did our current leaders just vote for another vast increase in military spending while trying to pay for it and a further tax cut for the wealthy by cutting medical care for tens of millions of other Americans?

Because, despite our intrinsic goodness, we keep choosing not to acknowledge the habits we inherited — our sense that we were entitled to exterminate Native Americans and enslave people of color, the greed, fear and violence that govern so much of what we do.  We keep reinforcing those habits.

We could, as Buddhist and other teachers explain, shed our selfishness, violence and greed.  We would just have to recognize our programming then work diligently and long to get free of those habits.

Castigating others feeds our own self-righteousness, so let’s stop doing that.  Let’s each of us just work at freeing ourselves.

And let’s stop electing leaders who subvert other governments.  In 1973 we worked to overthrow Chile’s democratically elected government.  Twenty years earlier, we’d done it in Iran.   Thirty years later we did it in Iraq, then Libya.  We’re trying it now in Syria and helping Saudi Arabia do it to Yemen.

Let’s elect leaders who will inspire us to act as the good people we are.  But before that can happen we’ll have to work sincerely to overcome our amnesia and purge our programming.

A Stroke of Insight


Here’s a very powerful TED Talk by neuro-scientist Jill Taylor about her experience having a stroke and what it revealed to her about our two consciousnesses.  Her conclusion, “which [consciousness] do you choose, and when” is not very satisfactory so I’ve added my thoughts below.

My stroke of insight

We are raised to use our linear conceptual brain because we’d be unable to navigate life without it.  Just think for example, about Jill’s struggle to dial the phone.  But we also have moments of delight, and if we have an activity like painting, we also spend some time in our other consciousness, the one she describes as energy meeting energy, with no boundaries.

Jill suggests the world would be happier if we spent more time in our joyful consciousness.  Meditation practice helps us recognize that we have such a consciousness, something we forget during everyday, moment to moment living.  The amazing joyfulness she experienced in that consciousness is what many devotees of spiritual practice hope to achieve.  Many Western Buddhists think nirvana must be like that.

What I have slowly come to understand through my reading, reflection and practice was made clear by what she says about the structure of our brain.  Happiness and the good behavior resulting naturally from it come when we inhabit both consciousnesses simultaneously

It’s not that we could be happy some of the time by switching out of our conceptual consciousness into the other one and continue being stressed the rest of the time when we’re living in conceptual consciousness.  There’s nothing wrong with linear, conceptual consciousness.  In fact it’s essential as I said before.  The problem is conceptual habits, emotional habits, any kind of habits.

Happiness comes from simultaneous experience of both our consciousness that reveals the world we are in at each moment and of our logical, linear, conceptual consciousness which enables us to navigate that world.

The Tibetan Buddhist practice I do is one of thousands of ways to train oneself to live more of the time in that way.  It aims to disrupt fixed concepts, the ones that make us think situations are what we expect, not what they actually are.  Our ability to conceptualize is an enormous blessing.  Autopilot with the radar shut off is a curse.

A friend who has practiced as I do for many, many years put is this way: “Dharma is malware for conceptual thought”.  He is referring to Tibetan Buddhist practices that disrupt our everyday imagination of how things are.  They linger in our mind and resurface unexpectedly.

I mention this because living in both our consciousnesses is actually very difficult.  We’re greatly over-habituated to living in a world that appears as it does because we conceive it to be that way without noticing the reality.

Words and Reality

Language is the decisive difference between us and other chimpanzees with whom we share 98% of our genes.  We can articulate and review our thoughts.  We can listen to and reflect on what others say.  This enormously amplifies our ability to learn.

But we ought to be much more wary of words.  They only point to things.  Too often we confuse the name we give a thing with what it points toward.  I’ll get to that in a moment.

First, something an empathetic friend helped me see.  She responded to my post about recognizing that I don’t exist“What you have written about your life is intriguing […] and a little heartbreaking”.  What I saw is a new level of how blessed I’ve been.

My life has never, since I started work, anyway, felt “a little heartbreaking” to me.  I’ve encountered a mix of circumstances, some quite difficult, but I was blessed to accept them and take action, not suffer.

My aim in my no-self post was to show a series of paths I took that were misguided.  My experience along that route to nowhere was a sense of adventure, though.  It was like being on a long trek through different lands.

So I’ve been reflecting on why I was blessed to feel that way.  Two powerful forces were at work.  I’ve mentioned the one known as Florence, my mother who felt there was no challenge she could not surmount.  I’ll say a little more about her, then some about the force in my father, Leonard, that I had to oppose.

Florence grew up in a Catholic orphanage.  She loved children, trained as a nanny and worked first for a wealthy English couple then in Italy for a marquess.  She loved Italy and would have stayed longer but the marquess had to replace her when he was sent on a diplomatic posting to Hitler’s Berlin.

She never said much about that time but it was evidently happy.  She explored with enthusiasm and one of her very few possessions, a picture of a chalet in the mountains on my bedroom wall, likely sparked my own Himalayan treks.

Leonard’s mother died before he was a year old and his father, Whalley, was jailed for refusing to fight in WW1, so he was raised by his beloved grandmother until he was eight.  When Whalley remarried, the three of them joined one of his younger brothers in Akron, Ohio.  Whalley, who hated the cold, was happy when he was offered the chance to operate a citrus farm in extreme SW Texas.  He knew nothing about farming and not a single citrus tree was there but he loved it.  So did Leonard but his step-mother Edith hated the heat even more than Whalley hated the cold, so after a few years they returned to Ohio.

When Whalley was unable to get a job in the Great Depression, he and Edith returned to England.  Leonard stayed to graduate from High School and the friend with the farm offered to fund his college education but Whalley sent him a ticket back to England where, not knowing British history, he did not qualify for the Civil Service as Whalley hoped.  That was when he began giving film shows for the Peace Pledge Union.

The lesson Leonard drew from all these upheavals was, the best he could do was endure.  His happy memories of the farm in Texas and of High School predisposed me to be happy in America but they compounded his yearning for stability.  He was apprehensive about new upheavals anyone with power over him might create.

What my friend’s comment about “heartrending” showed me is, I always understood more than I recognized about acceptance and suffering.

Now a more dramatic example of the power of words.  The Zen master who was my first Buddhist teacher told us one morning:  “If you really want to end suffering, stop creating it”.

Hearing that in a receptive moment, I got a glimpse of what acceptance means and that I had been blessed to practice it much of the time even though I hadn’t understood the word before.  I’ve mostly done as my mother did and my father did not, recognized negative circumstances, not felt sorry for myself and taken action for change.

Here’s a second set of thoughts provoked by a response to my post.  Richard wrote:  “The intersection of physics and psychology gets pretty strange doesn’t it? I’ve done a lot of thinking about the implications of quantum physics, and our worldview. Mostly, it’s been a bunch of circular waffling. The only thing I’m fairly certain of is that our model of reality is flawed, probably because of some version of the “you can’t see the true reality from within the system” problem.”

I circled, too, until I saw that although I have no self, I do exist.  We can discern the structure of reality from within the system even though we can’t quite see how it operates.

We manifest from an ever changing force field, as does everything we perceive, so from that perspective, we don’t “really” exist.  But  our actions change the force field, so in fact we do exist.  How to think about that?

Nothing that is perceptible to us sentient beings can be found in the force field, yet every sentient being is a point of consciousness with the capacity to act.  That means we exist in more than one way, only one of which, the form that takes action, is a form in the way we imagine.

Consciousness is the great puzzle to brain scientists.  Is it a product of the brain, or somehow separate?  I sense it’s separate but what has made all the difference for me is recognizing that we exist in a form that, because it has no intrinsic nature and is utterly imperceptible to our senses, to our way of thinking does not exist.

The reality of sentient beings takes threefold or twofold form in Buddhist metaphysics.  The form that acts is the nirmanakaya, the conscious form is the sambhogakaya, and the imperceptible one is the dharmakaya.  The first two are also thought of as one, the rupakaya, to highlight that the form with no properties is the ultimate level of reality.

There’s a vast mass of logic about why and how reality is multi-fold but it remains in the end a mystery to our intellect.

What we can be certain about is that matter manifests from energy.  We can start by thinking of matter as congealed energy and energy as liberated matter, but when we use quantum physics to examine what’s going on we see that you and I, for example, exist in both forms simultaneously.

Or perhaps we exist in three forms, the three kayas, which we could rename Tom, Dick and Harry if that feels less foreign, or Romeo and Juliet if we’re thinking about the two forms.  It’s only what the words point toward that matters.

I’ve noticed some changes since I began getting glimpses of what all these words are pointing toward, that what seem to be separate beings are not separate, that we are all manifestations from one ocean whose currents flow without boundaries, that we are all eddies in a maelstrom of pure energy.

The less separate I feel, the less indifferent I become.  My impulses are more kind, I’m more prone to compassion than anger, and I’m less grasping.

The energy flows that manifest as Martin are changing because I’m watching them, and the longer I watch, the more sensitive I become to the eddies that manifest as other beings.

Yes, the way this multi-fold reality works is a mystery but now I know how to proceed, acting that way is deeply happy-making.

Happy Birthday in Every Moment

My body was already sixty years old when I began to see with some clarity that I don’t exist as I’d always imagined.  I’ll try to explain what I experienced.

What I noticed first is there had been at different times a different person in my body.  I’ve given them Nordic patronymics.  Leon Leonardsson came first.

Leon came to life in England during WW2 in an isolated farm-worker’s cottage with no utilities.  He was the only child of Leonard and Florence Sidwell, a happy kid fascinated by farm machinery.  Because his parents had no friends, Leon’s social skills were weak but he was highly intelligent.  Florence made him study every day and he got the best results of all students in the exam that determined which school he would go to when he was eleven.

Leonard’s work since WW2 driving an excavator to maintain waterways paid very little but Florence found him a better paying job at this time selling insurance door to door.  They were now able to buy a house with a tiny garden in the neighboring town.  But Leonard hated his new job and that he now had so little room to grow vegetables.  And Leon had nowhere to play and nobody to play with.  As Leonard’s passivity evolved into depression, Leon fell prey to the same disease.

Leon’s new school, a bus-ride away in the county town, was an undistinguished private establishment founded in 1608 that had been recast as a State school ten years before Leon arrived.  Life continued there almost as if the British Empire remained triumphant.  Leon studied and remained top of his class but he was disoriented in this new world.  Told after a couple of years to take the exam for a scholarship to Eton College, he passed but then read about life there and, horrified by the prospect of the even more foreign culture of the aristocracy, he failed the oral interview.

During that first year or two as Leon floundered in his new environment, a less passive new person, Sid Leonsson, began taking over.  He told himself he was justifiably alienated from an antiquated culture, started building the personality of an intellectual and began reading philosophy.  He labeled himself an existentialist.

The secondary school curriculum in England in those days channeled students into either the sciences or the arts but Sid insisted on continuing to study both Physics and English literature.  Then, impatient with a curriculum that still felt too narrow, he drifted ever further from both subjects, roaming far afield into theories about the human condition.

He was delivered a great shock by “Three Faces of Eve”, a psychologist’s account of a patient whose body hosted three entirely different people vying for control.  What if he was not the only one in his body?  His current identity felt inauthentic.  Maybe other personalities would spring forth, and none would be authentic?  A friend whose psychologist father specialized in schizophrenia introduced him to much unsettling literature on this topic.

Sid was also deeply moved by Wilfred Owen and other WW1 poets who expressed the horror and insanity of war.  His grandfather, Whalley Sidwell, had faced execution for treason by refusing to join that war and was jailed for two and a half years.  Whalley’s five younger brothers also refused .  One explained: “What if I kill a German boy then I meet his mother and she asks me why I did that?”

Whalley was a powerful presence.  His son, Leonard, drove a van with a film projector all over England during the 1930s for the Peace Pledge Movement.  Their idea was to make war impossible because everyone would have pledged not to participate.  When WW2 broke out, Leonard did refuse to participate and he was jailed.  On his release he was assigned to agricultural work.  Sid did not yet notice that Whalley was occupying his body, too.

Further study felt useless to Sid by the time college was due to start and he decided he must get a job. Having no other idea how to get one, he went to the government office where jobs are posted and was given one picking apples.  When all the apples were picked, someone told him jobs are also listed in newspapers and showed him one as an inventory clerk.  A couple of years later someone told him the computer department would be better so he went there as a computer operator.

A year later, married and living in London, Sid for the first time searched for a job.  He found one as a programmer at a Dickensian insurance company.  A year or two later someone encouraged him to apply to IBM where for three years he for the first time worked alongside thinking people.  He liked that but disliked the culture.  Asked “What is the purpose of business?” he realized he didn’t know.  The answer was: “To make a profit”.  That can’t be right, he thought.  It’s like saying the purpose of life is to breathe.

So, when Sid saw a small American company’s advertisement about opening for business in England, he joined them.  A couple of weeks later they decided not to enter England but gave him a job in America.  It was 1970, and that was when Martin Sidsson, the third person to do so, took the reins of what was by now a 26 year old body.

Sidsson made a determined effort to fit into the entrepreneurial technology startup and the local culture.  It was not hard because everyone he worked with was smart and interesting.  He also made a determined effort to take the initiative and he was soon assigned to manage development of a precursor to the Internet.  Over the next few years he eagerly took on additional responsibilities and made a determined effort to manage according to his belief that the chief purposes of business are to delight customers and provide opportunity for employees.

He eventually remedied his utter ignorance of business operations, established a management consultancy and learned how to market and sell.  That led him to study why businesses fail and how to set effective strategies.  His last decade of work was in leadership positions in a long established global business followed by an Internet-based startup.

Sidsson’s career was not entirely a smooth progression, however.  In the same way that Whalley and Leonard Sidwell had played an important role in Leonardsson’s life, Leonardsson resurfaced a few years into Sidsson’s.  Sidsson always started out ignorant about new responsibilities he took on and he enjoyed the necessarily fast learning, but because his responsibilities grew rapidly, it was stressful.  Also, everything took extra effort because of the depression he had inherited from Leon, Sid, Leonard and Whalley.

As Sidsson’s stress built up, Leonardsson saw an opportunity to regain control.  Believing farming to be the only truly satisfying occupation and unhampered by understanding the unending work required or why small scale farming was no longer viable where Sidsson lived, he got Sidsson to establish a sheep farm.

Some years later, Sidsson recognized another presence in “himself”.  His mother, Florence Sidwell,  had believed there was no problem she could not fix and no challenge she could not overcome.  Without her presence Sidsson could never even have attempted what he had achieved.

By the time he retired, Sidsson was aware not only of his immediate predecessors, Leon and Sid, who were still vying for control of his body, he also saw his parents, Leonard and Florence, taking action with his body.  He no longer had a strong sense of self and was not surprised when a new person, Martin Martinsson, emerged and took control.

Martinsson went trekking in the Himalayas and experienced there a culture that attracted him greatly.  People were cheerful, as if that was their policy, and they were respectful of each other.  What was the cause?  It seemed to be their Buddhist practice.  A few years later, after many more long treks, much reading, and closer study of the reality, he realized the truth is much more complicated.  The people he thought were Buddhist were mostly animist, Nepal’s traditions come to a great extent from its Hindu aristocracy, and it is a caste society with much domestic violence.

But by the time Martinsson saw that more complex picture, he was acting on what he had first sensed.  He was practicing Tibetan Buddhism.  He had received teachings from Anam Thubten whose book, “No Self, No Problem”, makes clear that we do not have an intrinsic self and whose magnetizing presence shows that one really can he happy in all circumstances and can always be spontaneously kind.

He then met a second teacher, Phakchok Rinpoche, who insists his students follow a disciplined program to reach the state Anam Thubten and others exemplify.  We can’t think our way to that state, he insists, we must slowly, slowly retrain our mind by observing how it works, studying teachings, and reflecting.  Now Martinsson had something to work at, which felt good because it exercised the discipline his first incarnation, Leonardsson, had inherited from his parents, Leonard and Florence.

“What is Buddhism?” Rinpoche asked.  The answer: “Selflessness!”  When you experience not having a self that is intrinsically separate from others, your behavior naturally is selfless.  But gaining and sustaining that experience takes practice.  Having “no self” is not how we ordinarily feel.  Instead, we feel we are in a body that actually is separate from others.

Struggling to understand this, Martinsson returned to physics.  The butterfly effect and more in James Gleick’s “Chaos” got him reflecting on the weather, which manifests in different ways in different places, calm, windy, hot, cold, clear, foggy, sunny, raining, snowing, and always changing.  He came to see that what we call weather is the product of a giant energy field of swirling currents which constantly interact with and change each other, that have no fixed boundaries, and that are always different from moment to moment but which recur in broad form from season to season.

Martinsson recognized that just as weather manifests in the Earth’s environment, what we think of as selves manifest in the environment of bodies.

He continued deeper into quantum physics.  Einstein recognized decades before even Leonardsson was born that matter and energy are different manifestations of the same thing.  Sid had not felt that truth in High School physics classes but Martinsson now began to feel the reality that atoms are not solid things, and nor are solar systems.  Studying Lee Smolin’s explanations of theoretical physics in “The Trouble with Physics”, he began to see that what we experience as things like the Earth, our own body, atoms and everything else do not in fact have fixed boundaries or any intrinsic nature.

Matter is congealed energy; energy is liberated matter.  It only appears to us sentient beings that matter and space are different.  The boundary between them is simply a product of our mind.

The configuration of energy that manifests as a human body is sentient, but with limitations.  Every human body is uniquely configured — the high intelligence of Leon, Sid, and the Martins results from the configuration of the body they share, for example – and every body is constantly changing.

Martinsson began to see not just that everything is in flux, but everything is a manifestation of an energy field whose flows constantly interact producing results that propagate endlessly.

There is no real beginning or end of anything, only of appearances in our minds that manifest from flowing energy.

Catching up on quantum physics made the Tibetan Buddhist teachings real.  Martinsson could now to a growing extent feel the two levels of reality, an underlying energy field and what manifests from that energy to our senses and concept generators as, for example, things and personalities.  Leon Leonardsson, Sid Leonsson, Martin Sidsson and Martin Martinsson all exist on both levels, manifestations of an ever-changing energy field that has also manifested Leonard Sidwell, Florence Sidwell, Anam Thubten, Phakchok Rinpoche and so many more who we think of as “others”.

Well now, am I saying that Leonardsson, Leonsson and Sidsson were real people?  Yes and no.  The more I told you about them, the more real they would seem, but that’s also true of Martinsson.  All of them manifested as real in a situation which made that possible.  They were real in the same way as a rainbow when sunlight is separated by raindrops into colors that we usually perceive as one.   We think of a person as having an intrinsic nature in the same way we think of a rainbow as a thing.

Is a rainbow made of matter?  Is it energy in the form of light?  We don’t ordinarily ask such questions.  We do speculate about people and their nature, but with the wrong perspective.  We think of behaviors that manifest as a person as something with an intrinsic nature although those behaviors are in fact manifestations of an ever changing interaction of energy flows with no fixed boundaries and which, although ever changing, never end.

What does all this imply?  The body labelled Martin Sidwell was conceived at a specific time, was born at a specific later one, and will die at a specific future moment, but the sentient being who manifests in that body had no fixed beginning, it has no fixed nature, and it will have no definite end.

Our every act takes place within and is part of an unimaginably complex energy field.  Our every act changes that flowing energy, just as the tiny force of the butterfly’s flapping wing interacts with the results of other acts and eventually manifests a tornado.

Buddhists refer to how the system operates as karma.  To a great extent our actions are shaped by our concepts and emotional habits.  We rarely respond directly to what we see because what appears in our mind is something that fits an existing pattern there.  We see what we expect to see.  We don’t experience each new moment as unique.  We don’t experience it as it really is.   Karma means we keep reacting as we always do until we shed our fixed ideas and emotional habits.

So everything we do matters, and everything we do out of habit instead of what is actually present is flawed.

Pattern recognition and autopilot enable us to navigate what appears — we must, after all, stop automatically for red lights.  Feeling the energy behind what appears — that results in compassion and brings happiness.

Poetry, Physics, Practice & the Ineffable

This story about Everyman exploring where he does not know the language has a deceptively deep point.

We enter the story as Everyman asks his guide “What’s that?” pointing to something intriguing.  It’s the same every time and so frustrating!  He understands none of the few words reply.

They walk on.  Suddenly, through a gap in the trees, Everyman notices an odd looking building.

“What’s that?” he asks, pointing to the building, and again understands none of the few words reply.

Now the path leads up.  From the crest he sees a beautiful stone structure that seems to overlook the next valley.

“What’s that?” he asks, pointing to the beautiful structure, and yet again understands none of the familiar reply.

So it goes every day.

Then one day they happen upon a man who speaks not only Everyman’s but also the local language.

“I don’t understand,” Everyman says.  “Every time I want to know what something is I ask my guide, but I never understand his answers and the really odd thing is, it feels like he always says the same thing!”

“Show me what you mean.”

“OK.”  Everyman beckons the guide over, nods to him and points to a colorful bird on a nearby branch.  “What’s that?” he asks, and the guide replies.

“There!” Everyman exclaims.  “What did he say?”

“He said, ‘It’s your finger, you fool.'”

The point of the story is we think words are the names of things when in fact, they just point toward “things.”  If we don’t see what is being pointed toward, we imagine words to mean what we already think they mean.

My experience working to understand, experience and embrace Buddhist metaphysics has been much like that of Everyman and his guide.

The ethics are the same but the Buddhist understanding of existence is fundamentally different from what I learned growing up.  The difficulty is, all the words available to express that understanding already have meanings in my mind.

I soon realized I must work to see what is different that familiar words are pointing towards.  That takes persistent effort and what is very unfamiliar to me, persistent relaxing.

There’s meditation that calms the mind, like waiting for the wind to slacken, because it’s hard to see clearly in our usual mind-storm.

There’s close observation and rigorous analysis that make it possible to recognize what is real.

And there’s chanting poetry, a disorienting ritual practice that facilitates the experience of what is real.

I’m so blessed to have been introduced to three approaches to the ineffable —  poetry, physics and practice!

TCN, Episode 10 – Customs and Immigration

Nov 10 – I reenter the USA via Philadelphia.  I’m nervous because Dan was once stuck here for several days.  My first stop is Immigration.

“Where are you coming from?”


“What were you doing there?”

“Buddhist classes.”

“Are you a Buddhist?”


“Do you meditate?”

“I do.”

“Does it make any difference?”

“I’m growing a bit less selfish and sometimes more helpful. My wife says I’m becoming a better person.”

“Well if your wife says it, that’s decisive!  How long do you meditate?”

“Part of what I do is meditate, the other part is ritual chanting.  I do a couple of hours altogether first thing in the morning when I can follow my routine.”

“Oh, that’s too much, I can’t do that…  My wife keeps telling me to meditate.”

“I couldn’t have done it when I was working.  My teachers say it makes a difference if you do only 15 or 20 minutes every day.”

“Hmm.  OK…  Welcome back to America.”

“Thank you.  Try it for 15 minutes.  See if it works for you.”

The Immigration man one line over interviewing the woman from South Sudan who sat next to me on the plane and asked me to help her complete the Customs and Immigration form tells her to go to the “Secondary Interview” room.   She also asked me to help her navigate the airport so I look for my bag while she waits.

Happy to find my bag intact, I take it to where the woman is waiting.  She doesn’t know why she is there.

A serious young white man and a cheerful young black woman tell her to come with them for questioning.  At a nearby table they examine documents she retrieves from her bag.  She is nervous but they finish quickly and tell her:  “You don’t have your Green Card yet.  When you do, it will come here.  Okay, you can go now.”

So off we go to find her large bags, then on to Customs.  Everyone else on our flight is long gone.  At the end of the “Nothing to Declare” path a friendly woman smiles at my companion, waves her forward and says: “Don’t be nervous.  Everything is okay.”  She smiles more broadly when my companion shyly approaches, stamps her form without looking at it and waves her on.  Then she smiles at me, waves me forward and stamps my form.

We hand over our bags at the Transit desk then look for the gate for her flight to Minneapolis.  The display doesn’t show it because she has a four hour layover.  I find a friendly black woman at an Information booth and introduce them.  My companion is now in good hands so I go for my flight to Boston.  It leaves almost on time!

This was my best return journey ever.  You’d think my Buddhist practice is working 🙂