My ALS Adventure – August 2018

 

The focus this month was on my reduced lung capacity.  My diaphragm is weak enough that I’ve started part-time use of two machines.  My overall strength is dropping but I’m still in pretty good shape.  We’re about to set off on a two-ish month road trip all round the States while I’m still strong enough.

August 7 – to my family

Six months ago my only serious weakness was in my mouth and throat muscles.  My diaphragm had begun to weaken but I wasn’t feeling it and I figured the 74% breathing capacity result I got then was artificially low because air was leaking through my weak lips.  It was only when I could barely get any reading from the spirometer at home last month than I recognized my diaphragm really had weakened.  That explained why I was getting tired so quickly when I did physical work.

So I wasn’t surprised that my breathing capacity this time we went to John’s Hopkins was down from 74% to 39%.  However, although I’ve lost muscle mass on my arms, shoulders, and legs, the technicians pronounced me strong.  I’m far from as strong as I was but I have no trouble balancing.

I asked how much longer they guess I will be able to walk — 18 to 24 months although of course “results may vary”.  That’s better than I expected and at the very least we should be able to enjoy our cross country road trip in the rv starting next month.

They’re getting me a BiPap machine to wear at night that will push more air into my lungs and a Cough Assist machine to clear secretions from my lungs.

I’m feeling less tired today than since I got home from the retreat.  I rarely had health problems in the past and I always recovered quite quickly when I did, which means I expect tiredness to be temporary.  More broadly, I expect I will recover from ill health.  I know I’m not going to recover from ALS and that I will grow more tired more of the time and I will continue to lose strength but I have no experience to set realistic expectations.  The lack of a crystal ball doesn’t bother me, I now experience how things really always were.  We never know for sure what will happen.

My Tibetan doctor has taken me off the precious pills and put me on a different regimen for the next month.  She’s had very intermittent internet access for the past few weeks while travelling in remote areas of Tibet so I don’t know specifically what these new meds target.

August 18 – to my family

The director of the John’s Hopkins ALS clinic arranged for me to visit a pulmonary doctor based on my 39% breathing capacity test result and he set me up for more breathing tests.  When we went for them on Wednesday I couldn’t get my lips round the spirometer mouthpiece so it was impossible to get a reading.

Next we went for my six month checkup with the neurologist who specializes in ALS.  All three of us enjoy these visits and find plenty to joke about.  He’s intrigued by my Tibetan Buddhist practice and medicines and because he’s Indian I greet him with namascar, hands together and raised in the blessing prayer.  He reciprocates and we repeat the gesture when we part.

He had me walk, balance on one leg and hop on one leg.  I had no difficulty doing that with either leg so he says the 39% breathing capacity result must have been falsely low.  Some of the air I breathed out must not have gone through the spirometer but escaped around it because my lips are too weak to make a tight seal.  Nonetheless, he says it will be good for me to use the BiPap machine.

I asked him about the conflict between two things I’ve read about ALS.  One is that an environmental factor triggers a latent defect in the genetic structure of motor neuron cells so when they replicate, the RNA in the new cell does not produce the correct motor neuron behavior.  The other is that motor neurons, unlike our other cells that replace themselves every seven years, do not replicate.

He said motor neurons and other cells that make up the central part of the brain are not replaced.  Most experts do believe ALS is triggered by environmental factors but there are many theories about what is triggered.  I forgot to confirm it, but the fact that motor neurons don’t replace themselves must mean that stem cell treatments to replace them will not work.

So, the neurologist is pleased with my overall condition.  His only suggestion was that I should get a Botox injection to cut the excess saliva I’m producing now, which medicines aren’t sufficiently reducing.  Felicity and the grandkids will be pleased about that 🙂

Yesterday I had my annual checkup with my highly skilled and delightful primary care doctor who is from Pakistan.  She noted that I am weaker than I was a year ago but am still in pretty good shape.  She prescribed for me to have shingles and flu vaccines because I must minimize the risk of getting things my body needs to put energy into fighting off.

I seem to be recovering from the exhaustion that left me unable to do anything but sit reading for the week following the Buddhist retreat.  We got our 23 year old RV (same age as Doma) back a couple of days ago from having its water and waste tank gauges replaced (the only defect I found when I was living in it at the retreat) and I was able to repair its ladder to the roof, which took a couple of hours and involved much climbing up and down a stepladder.  I had to rest for a few minutes near the end because I was short of breath but overall the project went much like before I had ALS.

I’m not suggesting that I’m recovering or even that my strength is no longer declining, just that my exhaustion last week may have been an anomaly.

My visit with the pulmonary doctor will be at the very end of the month by which time I should have gotten used to sleeping with the BiPap machine.

I’ll let you know how I get on with the machines and what the pulmonary doctor says at the end of the month.  Then we’ll set off on our great road trip.

August 20 – from my Tibetan doctor

The Basam Lhalung and Samnor formulas are both aimed at regenerating your kidney function and overall capacity to generate the bodily constituents (cells and tissues of all constituents of the body).

Basam Lhalung rehabilitates the kidneys particularly after excess stress and load causing inflammation. This helps the kidneys to regenerate and then focus on proper filtration, function and mobility of chuser and neural flow.

Samnor supports the rlung flow and vitality particularly from the rlung generation region of the pelvis.  It cleanses the chuser related to immune and neural function, cycling and signaling, and helps rebuild the foundation for their function.

Both of these formulas are aimed at rebuilding your energy, stamina, kidney function and overall bodily constituent base.

August 31 – to my family

Our first appointment at Johns Hopkins yesterday was for a botox injection to control my dribbling.  It seems odd to administer a powerful neurotoxin to a patient with a neurological disorder but it makes sense.  The injection is given from outside the mouth into the salivary glands.

It stung quite painfully for a very short time on the right side of my face but not the left and I was not aware that anything had been done after a minute or two.  They start with a very low dose so I’m to continue with the tablet I’ve been taking.  It will take a week or maybe more before the botox begins to work and it will take longer before I know if the dose should be increased.  I’ll need to have the injection renewed every 3-5 months.

The second visit was for more tests of my lung capacity and functioning.  The technician this time was more persistent than the one who gave up earlier in the month.  We got a reading of 38% capacity breathing in and 35% breathing out.  You’re recommended to use a BiPap machine at night if your capacity is below 50%.  He also took an arterial blood sample.

I’ve been getting used to the BiPap for a few days.  Breathing with its help is easy enough but my mind isn’t used to having something strapped round my head when it goes to sleep.. The cough suppression machine is more challenging physically.  It blows air forcefully into my lungs, then sucks it back out with what feels like even greater force.  I look like a bullfrog.

My first visit with the pulmonary specialist at the end of the day was reassuring.  The oxygen and carbon dioxide levels in my blood are perfect so my lungs are working well.  He asked many questions about my activities and listened carefully with a stethoscope then told us the 38% and 35% lung capacity readings are falsely low, just as my neurologist said.

ALS patients with bulbar onset typically get artificially low lung capacity readings partly because weak lips mean air escapes around the side of the test instrument and also because muscle signalling weakness makes it hard to push and pull one’s breath as forcefully as the diaphragm muscle could really accomplish.

So, since I’m pronounced healthy enough to enjoy our maybe two month long road trip, I’ll now go back to packing 🙂  Here’s the RV.  We’re not calling it The Leisure Seeker haha.

My ALS Adventure – July 2018

My circumstances this month were especially happy.  On July 3rd Felicity and I shared champagne to celebrate our 53rd wedding anniversary.

A week later I went for three weeks of Buddhist teachings and practice with my so wise, kind, clear, practical and funny teacher.

I don’t know if my health changed last month.  I needed more sleep, but I always do get tired at meditation retreats.  I soon stopped participating in the 6 am session.  Then I went to bed instead of the 8 pm session.  I was sleeping anywhere up to 13 hours and not feeling bad about it 🙂

A dear friend’s question at the retreat about how my Buddhist practice helped me to attain a measure of equanimity led me to reflect on what led me to this path.

The Tibetan aspect was sparked fifty years ago when my aunt Madge gave me “Seven Years in Tibet” for my birthday. It told me nothing about Buddhism but it left me longing to go to Tibet.

What led me to Tibetan Buddhist practice is more complex. To explain that I must say a bit about some life experiences and their results.

Until I was five we lived in a tiny and very remote house with no utilities at all and we were very happy. Then we moved so I could go to school. My parents needed more money to live in that place and they never had enough after that. Watching them, I developed a great fear of poverty.

In High School I tried to figure out what to do with my life. It seemed the most important thing would be to attain wisdom. I’ll explain why in a minute. I read about Zen Buddhism, Sufi and Christian mystics, I read existential philosophers, Gurdjeff and Ouspensky, Jung, Aldous Huxley’s experiments with LSD, and so much more.

But I could not figure out how to start and in any case it seemed impractical. My greatest emotional need was to escape from poverty and I thought the way to do that was to amass money. So I got a job picking apples, then one in an office when all the apples were picked, and there I stumbled upon computers.

By the time I was 35 I was leading a data communication business with a staff of 100+ that contributed a third of the profits reported by the larger business of which it was part. Then we were acquired by a much larger business. My operation was inconsistent with their strategy so it was shut down.  I was devastated.

It did not occur to me that my response to that event was creating the suffering I inflicted on myself, my family and others, not the event itself.   I had constructed an imaginary future that would among other things end my fear of poverty, and I was fiercely attached to that dream.  It had come to an end but I could not let it go.

Not understanding that I was the creator of my own suffering, after many months I changed my circumstances.  I started a consulting business that would have multiple clients, not be vulnerable to changes at just one. Effective as that was, it did nothing for the root problem.

Buddha recognized and taught that the root of all our suffering is poisons in our mind, our conceptual mistakes and emotional habits. The one that was triggered when my dream business was shut down, attachment, remained ready to poison me again when I retired, as I’ll explain in a minute.

Another poison is anger. I was lucky that was not a problem for me. My father was a pacifist from a family of them and I inherited their abhorrence of violence.  That was what made me think my goal should be wisdom.

The utter madness of WW1 had ended only  26 years before I was born, I was conceived at the height of WW2, and nuclear WW3 was imminent when I was in High School. What could be more important than seeing how to bring an end to that violence?

Jealousy, another of the most destructive poisons, didn’t seem to be much of a problem for me because my parents had none but as I will also explain in a minute it was in fact a huge obstacle.  The worst obstacles are those we don’t even see.

I was blessed that the poison of pride was not much of a problem.  My parents paid no attention to what others might think of them. They had strongly held values to guide their own behavior and they did not have the habit of condemning others.

Actually, the longer I live the more blessed I realize I am by my mother who died worn out when she was 59 and I was 23. She grew up with two younger sisters in a Catholic orphanage, trained as a children’s nurse and was utterly convinced that if there was a problem, she could fix it. She gave me confidence.

As I grew older I began to think back over my life. I had sometimes noticed myself acting selfishly but it was only after I retired from years of too long days of obsessive work that I recognized my self-absorption. It took even longer to see the origin of that selfishness.

My mom loved children. She had no more of her own after me but when I was 6 or 7 they got me a foster brother. I never acknowledged him and remember almost nothing about him.  At some point my parents and the social worker decided to send him back to an orphanage. The explanation I remember is that he didn’t fit in.

Later, I got a foster sister who became a great disappointment to my mom. I had even less to do with her. She ran away forever when she was around 16.

I was so ashamed when I finally recognized how I had treated my siblings. At last I realized how self involved I was. My behavior was poisoned by jealousy and what is translated from Buddhist texts as ignorance, which means being unaware and uncaring.

A little later I had my next great encounter with a broken dream. Reflecting on that I finally began to recognize that I was also poisoned by attachment.

The upside of the acquisition that ended my network business was enough profit from stock options to buy a run down farm.  I wanted to recreate my early childhood world.  We raised sheep for a few years but my jobs left me too little time for farming.  I dreamed that when I retired I would learn to make excellent hay.

By the time I stopped spending twelve hours a day in my office two hours away from home as well as many weeks overseas on business, Felicity had decided she must fulfill her own lifelong dream and live by the ocean.

So now I was powerfully attached to two incompatible things, Felicity and the farm. Abandoning the farm was what finally showed me that source of my suffering, attachment.

So, having at last recognized that my mind was poisoned by attachment, jealousy and ignorance I was very ready when I finally stumbled upon the results of Buddhist training.  Trekking in Nepal I met people whose culture was cheerful and kind, which I thought must result from Buddhism.

I began seeking a teacher. Felicity met one while I was away in Nepal, Anam Thubten, whose presence and way of being was an extraordinary inspiration.  He exemplifies the kindness I’m aiming for but I needed more instruction on how to proceed.

I meditated intensively for days and weeks at Zen Mountain Monastery whose exceptionally wise abbot, Shugen Sensei, told us the central truth: “If you really want to end suffering it’s very simple. Just stop creating it.”  I didn’t know how to meditate though.

Then I met Phakchok Rinpoche and I knew instantly that I must do what he said. I had always rejected authority but this felt entirely different. Rinpoche knew what I must do and he would tell me. I don’t know how I knew that. It was such a blessing.

At that time I had made a little progress on attachment and recognized my most devastating poison, ignorance, along with the jealousy that triggered it, so I was well positioned for training in how to dispel them. I was also well prepared to gain equanimity because I had always been fairly calm. My mom had given me deep confidence.

What all this experience has taught me is, it’s extremely difficult to recognize, much less overcome our mind poisoning habits without a training program.  I didn’t learn much until after I found one, mostly just created suffering that prepared me to respond.

If we want to change we must find a program that feels appropriate for us then follow it diligently, not worrying about whether it will actually work.

And above all we must never forget why we are training, what we want to attain. A wise friend at the retreat put it this way: “We are not training to be Buddhists. We are trying to be Buddha.”

So ALS turns out also to be a blessing because it makes it much harder to pretend I’m not going to die. It’s easier for me to keep in mind that my life will end soon.

It’s also easier to accept that although I can’t, in this body, end all the suffering in the world, it’s enough to do what good I can while I’m here. I can spread some kindness.

My ALS Adventure – June 2018

 

This month was thought provoking.

June 26 – to my family

I was surprised when I tried to use the spirometer the ALS At Home study gave me along with other tools to monitor my health.  To use it I must blow through a tube at the end of which is a fan to measure the strength and duration of my out-breath.  I knew it would be hard to stop some of my breath from escaping around the tube because my lips are so weak.  What surprised me was discovering I can no longer take a deep breath or exhale forcefully.  My diaphragm is weak.

When I was thinking about it a few days later I remembered having to pause to catch my breath when I was using the cross-trainer.  The first time it happened was less than three minutes after I started.  I had to stop and pant for a minute or two.  After that I was careful not to push myself when I started and I worked my way up to 30 minute sessions that were fairly vigorous.  I imagined the problem had been weak leg muscles that rapidly regained strength.

Now I realize my diaphragm was already weakening.  That was over three months ago.

It looks like my breathing muscles are on the same trajectory as my mouth and throat muscles followed.  There was a long period where the decline was quite slow, then the pace accelerated.  Or maybe the weakening didn’t accelerate but just reached the point where the result was a serious loss of function.

There are external devices that enable one to keep breathing when the diaphragm can no longer do the job.  When they no longer work you can have a tube installed in your throat and have air pumped in and out that way.  I’m guessing life would continue to feel worth living with an external device although it would severely limit what I could do.  I don’t think I’ll want the throat tube but I’ll keep an open mind and see how I feel as my symptoms develop.  The advanced directives we signed years ago specify no heroic measures to preserve a non-functional life.

I continue to feel blessed to be alive now with you as my family.  I paused work on the summer kitchen so I could sheet rock the porch wall with its new windows and I’ll start installing the trim today.  It looks much better already.  Next month I’ll go for three weeks of teaching and practice in Cooperstown, NY and when Felicity returns from celebrating Megan’s 90th birthday at the end of August we’ll go on a road trip in the RV for a month or two.  The adventure will continue.  We don’t know for how long but we never did.  That’s in the nature of adventures.

July 1 – my current thoughts

It’s a blessing that ALS progresses slowly, doesn’t impact cognitive function and that my only pain is from biting my cheeks and tongue.  I have time to notice the results of losing muscle strength, and reflect on the implications.

Wearing shorts these days, I notice muscle twitching in my legs, like eddies in a river.  My leg muscles are still my strongest ones but the motor neurons that control them are dying.

An apocryphal and a true Buddhist story have been on my mind.

The Buddha, on his travels one day, met an old man beside a river.  “I’m so happy to see you again, master,” said the man.  “I have practiced and practiced since you taught me so many years ago.  Finally, I succeeded!  Yesterday I walked across the river.”  “Oh, you poor man!” the Buddha exclaimed.  “There is a boat just round that bend.  It would have taken you across so easily.”

I never wanted to do miracles.  In High School my life’s goal was to attain wisdom, but how to start?  Decades later I started trying to become less selfish.  Now I just want to grow more aware and more kind.

The true story is about a revered Tibetan master who had diabetes.  Leading a ritual practice one day, he picked up his damaru drum that you hold with thumb and first finger.  His fingers could no longer hold the drum upright.  What did he do?  He laughed.

Acceptance of negative circumstances is not doleful for those who have sufficiently trained their minds.  Surprises of any kind are an occasion for joy.  That’s worth practicing.

Where I am now, almost all the time, is in interested equanimity.

Earlier this month our middle son was married in a beautiful ceremony framed by events to celebrate the occasion.  Their photographer captured it perfectly.  It was a joyful time that also provided me  an insight.

Some who die in villages in the Himalayas are said to cause trouble, especially those who die in an accident.  They don’t realize they’re dead.  They want to communicate just like before but they can no longer be seen, heard or touched.  Nevertheless, their family members feel their attempts to communicate.  I didn’t believe that explanation.  I figured the trouble arose in the minds of the grief stricken living and wondered why it was attributed to the dead ones.

I saw why at the wedding when I experienced a weak form of what the troubled dead are said to feel.  I can communicate one on one by typing on my phone but that’s not effective in a group.  Because I cannot drink or eat by mouth, I could only watch others.  To a much more limited extent I was like the dead villagers, present but separate.     It was an interesting feeling.

Meanwhile, I’m so lucky that I can still do things!  The porch looks so much better already, our terrific painter will hide the gaps, and then it will be perfect.

 

My ALS Adventure – May 2018

 

Living with ALS is the same as it was before in that I can’t know what will come next.

This month I noticed twitching in my right side.  Since I have ALS, that probably means the motor neurons that control the muscles there are dying.  My mouth and throat muscles have continued to weaken for almost two years but all the others seemed okay.  That seems to have changed.

The most likely future suggested by the twitching is I will lose the use of my legs and most of what I can do with my arms during the next year although other alternatives are also possible  I might regain some vigor by working outside this summer, or I might stay as I am for quite a while.

The only thing I can be sure of is my body will shut down sometime.  I feel blessed to be alive right now no matter what my future.  I’m so lucky to have lived long enough to reach that degree of wisdom and to still have the potential to wake up more completely.

May 11 – to my family

There’s been no great change in my health since the last time I wrote but there are a few things I’m tracking.

The Tibetan Kundey medicine seems to be reducing my mucus production, I’ve started applying a nasal spray before going to bed and I’ve had less nostril blockage while trying to sleep.  I need to see this go on longer before I declare victory, of course.

I’ve also been coughing less often although I do still cough more than in the past.

I had a couple more incidents late in the day when I suddenly began coughing violently and had great trouble drawing breath.  It didn’t feel life-threatening, just something I must quickly overcome.  The bad part was Felicity’s distress because I couldn’t explain that I felt sure it was a transitory problem.   I imagine it resulted from weakness of my epiglottis letting saliva drain toward my lungs instead of my stomach.

I haven’t yet overcome excess salivation.  Atropine drops seemed to increase salivation so I went back to the pill three times a day.  Most recently I’ve continued with the pill and applied atropine before going to bed.  That seems to be helping.  I haven’t yet figured out what triggers excess salivation.  I get spells of high production while the rest of the time it’s not a problem.

Those problems and the cheek biting don’t bother me much because I’m used to them now.  I don’t like having such low energy, though.  Felicity asked if I think being 74 could be factor.  Of course not 😉

I haven’t felt like exercising on the cross-trainer recently but I spent most of the day a couple of days ago replacing the anti-rabbit fence around the vegetable garden.  That felt better than being on the cross-trainer, not boring.  My next project is to repair the bottom of the back wall of the summer kitchen.

My stomach was a bit disturbed while I was doing the fencing because I’d experimented with different foods the two previous evenings.  Felicity had bought salmon and I tried some along with my usual three kinds of veggies.  That had no noticeable effect so the next night I had salmon again but with broccoli and potato since I’d run out of my usual veggies.   I also added two scrambled eggs because I feel I’m not getting enough protein.  Oh, and both evenings I had a beer, for hydration, you know.

My gut continued to feel slightly distressed so I’ve eaten only formula the last three days but with the addition of a cantaloupe and yogurt smoothie in the mornings and more water.  I’ll go back to veggies instead of formula this evening.  I would never have given any of this any thought in the past.  It’s impossible to know how much attention to pay now.

It’s worth paying some attention.  Because of the discomfort and extra tiredness after working on the fencing I finally thought to look at where casein and soy, the primary ingredients of my formula, lie on the acid/alkali spectrum.  They’re both relatively acid-producing which my Tibetan doctor says I should minimize.  So I’ll start cautiously replacing more of the formula with foods that are more suitable.

I’ve been accepted into the “ALS At Home” study to assess whether ALS patients can monitor their vitals themselves and send the results to their doctor.  That means I’ll be able to monitor my lung capacity and other things.  I’m eager for that because I’ll be able to know for sure if there are any trends.

I’ve been doing a lot of reading while Felicity is away on her painting trip in France and doing some opera watching.  Coloratura soprano Kathleen Kim is spectacular and Sonya Yoncheva’s voice is so beautiful.  But try watching Yoncheva perform Casta Diva on YouTube then watch Callas who somehow goes beyond beauty and raises goose bumps.

Tomorrow I’ll drive to Hampshire College to take videos of Doma presenting her thesis to the Computer Science folks on Wednesday and the Natural Science folks on Thursday.  She’ll be presenting for parents of this year’s graduates on the day before commencement . Very cool!

May 26 – to my family

The end of pollen season along with the Tibetan anti-mucus medicine brought me relief from the blocked nose that was making it hard to get to sleep, and I have not had any more coughing fits that make it hard to breathe.

The ALS At Home monitoring equipment came a couple of days ago and I’ll learn how to use it this weekend.  I have to pass an online test before I can actually use it and at least some of the equipment uploads the results so I’m not sure if I’ll be able to access them but it’s a worthwhile program, anyway.

I haven’t yet changed my diet because I’ve been away from home quite a bit going to Doma’s graduation and helping her move out of college.

The negative news is I noticed twitching in my right bicep a couple of nights ago and again last night and there’s twitching in my right thigh  this morning.  That means the associated motor neurons are dying.  The ALS is spreading.  Felicity said she noticed twitching in my right shoulder a couple of months ago but hadn’t seen it since.

I’ve been feeling unusually tired for a while.  As I mentioned, I stopped exercising on the cross trainer.  I thought it might be a combination of age — I should expect to have less energy now I’m 74 — along with the wasting effect of getting little exercise over winter.  It looks like the greater factor is progression of the disease.

I’ll keep you posted of course and give a bit more thought to future plans.  Before I noticed the twitching I’d suggested we might take a road trip in the van and take the rest of Doma’s stuff to her in California where she will be living with David and Ilana before finding rooms near wherever her job turns out to be. I’m going for three weeks of practice with my Tibetan Buddhist teacher in July so we should probably take our road trip soon after that.

Please try hard not to be upset by my news.  We can’t know how long I will remain healthy enough to continue a relatively normal life, but we never could know that, anyway.  None of us can know our future.

I’ll continue doing things I enjoy and adapt to changing circumstances.  I’ll do less of what requires strength and more of other things.  In particular, we intend to spend more time with you 🙂

Speaking of things I enjoy doing, here’s how the summer kitchen is looking now.   Do you remember how it looked originally?  When it stops raining I’ll finish that wall and start on the floor.

My ALS Adventure – April 2018

I had a disturbing incident, upgraded my text-to-speech technology and began taking medicine to reduce the mucus that blocks my nose and triggers coughing.

April 7 – to my family

I try to give an accurate picture in my updates of what’s going on physically and how I’m responding so I’ll describe an incident yesterday.

The day before, I’d spent a couple of late morning hours cutting up fallen trees and carrying the wood to the woodpile.  I was very pleased that I had no acid reflux because even though I squat as much as I remember to do, there was a lot of bending to pick up the wood. I think it was okay because I didn’t start until three hours after eating.  I was disappointed, though, that my energy was lower than it was last Fall.

So, instead of my usual veggies for dinner that night I decided to puree some of the fragrant coq au vin Felicity had made, and complement that with half an avocado.  I know my soy-casein formula is nutritious but it just doesn’t feel that way.  I feel as if I’m on a diet of mac and cheese, hamburgers and fries — as if it’s keeping me alive but really isn’t good for me.  I had an urge for protein in a familiar form.

Next morning, yesterday morning that is, I had my usual 2 containers of formula then read for a bit.  I usually read for at least an hour after each meal but I wanted to check emails and the news so I went to my computer after only about half an hour.

Suddenly, I had a powerful burst of acid reflux.  There was a lot of it, it tasted very nasty and my throat refused to risk inhaling any of it into my lungs.  I was gasping, making horrendous gasping coughing noises, fighting for breath.  It felt like being under water.  I managed to force enough shallow in-breaths to stay upright, I did not vomit as I at first thought I might, and after a while my breathing returned to normal.  My stomach felt disturbed all the rest of the day and to a lesser extent through last night and into this morning.  I had no more food yesterday and nothing for breakfast today except water.  I felt like having coffee late morning today, I had a container of formula around noon, another one mid-afternoon and I’m about to have a third one now.  I feel  normal again 🙂

I think what happened had two causes.  Bending forward while at my computer compressed my stomach too soon over I’d ingested quite a large amount of formula, and that triggered the reflux.  The reflux was so acid and my stomach was disturbed because it no longer knows how to digest coq au vin.

It was scary for Felicity because I couldn’t write what was going on during the time I could hardly breathe, and I couldn’t explain it until I’d had enough time afterwards to think it through.  I’m pleased to report that I didn’t panic.

I’m telling you about this to give you confidence that my usual posts about how everything is pretty much okay are the whole truth.  It will also be part of my update on my website next month for the same reason and to say once again that while ALS is not an adventure I’d have chosen, it’s one I can’t avoid and, like all other adventures, the best way to experience it is as a learning opportunity.

April 15 – to my family

We went to Johns Hopkins on Tuesday to check out products for people who can’t speak.  

We started with a contemporary version of an Etch-a-Sketch because writing on a notepad works well for me but I didn’t like its fat stylus.  Writing will likely remain the fastest, easiest method for me, but my handwriting isn’t always clear so it will be better for others if I type more.

Next I tried an iPad and an iPad mini with Proloquo4tex software.  I liked the iPad mini and Proloquo is much better than the free software I have on my iPhone.  It will take some getting used to but it will be worthwhile.  I also tried some other text-to-speech apps that aren’t as good.

The specific problem an iPad and Proloquo will solve is emergency calling.  Right now I have no way to call an ambulance for myself while Felicity is away, or one for her while we’re both here.  With an iPad I could type what I want to say and have it spoken into my iPhone.  Maybe I could even learn to type fast enough for group conversations which I can’t do with my tiny iPhone.

We also asked a nurse about my reflux and blocked nostrils.  The reflux has pretty much only happened after I bent forward compressing my stomach too soon after eating.  She said I should sit quietly for an hour after eating, which I almost always do already.  She also suggested over-the-counter medicines that combat acid reflux but I believe my problem is just because all the food in my stomach now is liquid.

She had nothing to suggest about my blocked nose but did offer to retest my lung capacity.  I was happy about that, and pleased with the result.  The normal range with the instrument she uses is 80-100.  My score was 84 when I was diagnosed with ALS a year ago.  When it was checked a couple of months ago it was 72.  Now it is 74 and I felt I could have taken a deeper breath.

On Thursday I had my teeth cleaned.  I was dreading it because my teeth are very sensitive and I now produce so much saliva.  Well, my teeth are in better shape now I’m not eating by mouth.  There was much less plaque than usual and it was much less tightly attached to my teeth.  The experience was almost painless!

What else?  I’ve been eating just formula and not exercising since the coq au vin scare but my stomach has felt back to normal for a while so I restarted eating pureed veggies for dinner two nights ago.  I will restart exercise today.  I did some chain-sawing yesterday afternoon.

My main difficulty right now is blocked nostrils and I’m trying a spray for that.  Difficult breathing has made it hard to get to sleep for quite a while and more recently I’ve been having coughing fits that I’m almost certain result from post-nasal drip.  The dental hygienist said “everybody is getting that now because of the pollen”.

I don’t have much energy or strength these days but as I’ve said before, I’m expecting both to improve as I do physical work outside again.  I suspect my mostly-formula diet is also a factor.  I’ll keep you posted 🙂

April 16 – to my family

I tried mom’s CPAP last night. My nostrils were so plugged it could not push air through. My Tibetan doctor is sending meds that counter mucus. Maybe that will help.

April 16 – a reply

I get that with the CPAP too, but after a bit the air finds a way. Either way, you’d be prescribed a small mask that goes over nose and mouth probably, so it wouldn’t matter.

April 25 – to my Tibetan doctor

I haven’t had a recurrence of reflux since I last emailed you.  I think there’s less mucus since I started taking the Kundey — I do put some on my tongue every time.  I think my nose is less prone to blockage.  I feel like an alchemist grinding my various medicines each morning 🙂

Because my bulbar-related symptoms vary from day to day it’s hard to discern trends.  I’ve had a couple more coughing fits where I had great difficulty drawing breath.  They occurred late in the day and I think they were triggered by a problem swallowing saliva but I’m not really sure.  I have spells a few times each day where I produce great amounts of saliva for a while and I’m not sure if that’s getting worse.  I haven’t figured out what triggers them except that I always get one when I first go to bed.

I’ve often been more tired recently, which might be pollen allergy.  I stopped exercising for about a week but restarted yesterday.  I’m careful not to stress my body with too much exercise.  I enjoyed mowing for the first time a couple of days ago.

Consciousness a Feature of the Universe

I try, on the anniversary of my discovery of America, to reassess my understanding of reality.  Last year I saw it as an ever changing energy field where what “we experience as the Earth, our own body, atoms and so on do not in fact have fixed boundaries or any intrinsic nature”.

What, though, is experience?  It’s the product of consciousness, but what is consciousness?

We might say anything is conscious that grows, adapts to its environment and can communicate.  Trees are goal-seeking and communicate with each other, though, and it’s a stretch to declare them conscious.

A more stringent definition includes subjective properties of experience, qualia, that occur inside our minds.  That excludes trees, but what about animals?  We don’t really know  which animals, if any, have qualia.  Explaining how and why we have qualia is the famously hard problem of consciousness.  Why and how is our existence something we experience? 

What in fact is this thing we call mind where qualia arise?  Dictionaries tell us mind is “The element of a person that enables them to be aware of the world and their experiences, to think, and to feel; the faculty of consciousness and thought.”

But the mind also thwarts consciousness.  It shows us things that do not exist.  My mind did that, for instance, high above the Kathmandu Valley, showing me first a man in black, then a bear and then another menacing man, not one of whom was there.

All that’s puzzling enough but is mind a product of our brain or is its substrate outside our body?  Each of us arises from the universal energy field that does not have boundaries.  Could mind be an aspect of that energy field and also be without boundaries?  Could consciousness be a feature of the universe, like gravity?

And if mind is a product of our brain, is its scope localized there?  Do its inputs come only from the body of which the brain is part?  Dreams sometimes seem to incorporate real events we could not be aware of via our traditional methods of perception: taste, sight, touch, smell, and sound.

Also, do actions our mind initiates occur only via physical links in our body?  And are its operations even constrained by time?  The CIA published a summary of a great deal of research indicating that we can both initiate action remotely and see events before they occur.

Most of us have at least some experience of knowing what someone is thinking before they speak or when they are out of contact.  Species that flock communicate with each other so rapidly that shared thought seems the only explanation.  And there’s so much more —  some dogs, for example, know when their human master is about to have an epileptic fit.

There is a range of phenomena related to consciousness that don’t fit with the view that our mind is localized to our body:

  • Remote viewing — the ability to know something that is happening at a distance without the use of the physical senses
  • Remote influencing — the apparent ability to alter physical manifestation in an intended direction without a chain of physically causal events
  • Precognitive dreams — a person dreams about events that happen in the future
  • Survival hypothesis — consciousness continues after physical death

We call those phenomena anomalous because they should not exist if matter is the way we experience it, made up of continuously existent, indivisible atoms located within an absolute space and time.  If matter is that way we could, if we knew all the equations governing the spatial positions of fundamental particles as a function of time along with the initial conditions, know everything about reality including all that happened in the past and that will occur in the future.

Those phenomena are not incongruous, however, with our understanding of quantum physics.  Particles appear and disappear and we can know only the probability of their occurrence, space is not fixed and time is not absolute.  What we categorize as anomalous phenomena are inconsistent with the world we experience but not with the underlying reality.

What that suggests is, phenomena we consider anomalous but which have often been observed could be real aspects of consciousness.

Increasingly over the past year I’ve been puzzling over the Buddhist teaching that names the energy field I wrote about last year dharmakaya and the forms we experience nirmanakaya.  There are three kayas; dharmakaya, sambhogakaya and nirmanakaya.  I’ve been trying to see the nature of sambhogakaya.

My teacher explained sambhogakaya this way, that it manifests as five divine wisdoms:

  • All encompassing space that projects consciousness and is the source of compassion
  • Mirror-like wisdom, the purified form of “form”
  • Equality wisdom, bias toward none
  • Discernment wisdom, perception, and
  • Action wisdom, the purified form of “concept”

I’ve been thinking especially about the first wisdom, all encompassing space that projects consciousness and is the source of compassion.  My Buddhist practice is increasing my compassion, my urge to act kindly.  It just happens.  I also grow more aware of how self-absorbed I still am.

What’s happening is, I’m slowly shedding mental habits that obscure reality.  Our mind matches fragments of what we perceive against its gallery of pictures, stories and concepts, then we act on what it in fact made up.  That’s how above Kathmandu I saw creatures instead of what was there.

But why would fabricating less of what I experience result in compassion growing stronger?  Compassion must be an attribute of consciousness.  As I grow more conscious the natural result is I act more kindly.

When we can’t quite define a word it can be helpful to consider its opposite.   The dictionary tells us that opposites of conscious include unaware and unresponsive.  A related word is alive so another opposite of conscious is dead.  The deepest opposite of consciousness, however, is dreaming.

When we are dreaming our mind is not in touch, or very little in touch, with its environment.  Our fully conscious mind processes its environment accurately, however, providing us with a pure perception in response to which we are naturally happy and kind.

Consciousness was missing from my model of existence last year.  I hope to have fewer questions about it next year.

My ALS Adventure – Tibetan Medicine

My neurologist says I have one thing wrong, my motor neurons are dying, for which there’s no cure.  My primary care doctor says I am healthy apart from the impact ALS is having on my face and throat.  My Tibetan doctor’s observations, however, and her consultations with a Tibetan specialist in neuro-degenerative diseases say my condition is complex but may be curable. Here’s an overview of the theory and practice of Tibetan medicine along with some detail about its diagnosis and treatment of my condition.

Tibetan medicine is based on theories and practices derived from what developed into the major medical systems in India, Persia, Greece, and China, as well as ancient Tibet itself.  The primary diagnostic tools are highly sophisticated forms of perceptual skills that recognize physiological data through sensory means.  One of its most developed diagnostics tools is pulse analysis.  Inspection of urine and the tongue are also important.  Treatments include medicines primarily made from herbs and minerals, physical therapies like moxabustion (a form of heat therapy), massage, needle therapies (similar to acupuncture), and changes to behavior and diet.

The fundamental theory is that disease originates from wrong levels of nyepa, three bodily energies named rLung, tripa, and béken, each of which has five subcategories with specific locations and functions.  Disease results when these energies are disrupted by unhealthy diet, activity and/or environmental triggers.  The specifics of an illness vary with each patient’s background.

The theory seems unscientific to those of us who learn about human biology in the West but some recent research has shown correlations between the nyepa metaphor and modern genomics.  The symptoms classified under nyepa are in any case real enough so its best to think of them as diagnostic categories with related metabolic profiles and systemic similarities.  

Each of the nyepa is a potential cause of illness.  It is often said that disease results when the nyepa are out of balance but it’s more that each of them needs to be in its proper biochemical pathway, function, and degree of activity than that they need to be balanced relative to each other.  The three mental poisons—desire, aversion, and delusion—are the root causes that manifest the three nyepa.  Imbalances in them show symptom presentations that relate to these three emotions.  Everything that appears originates in the mind. 

rLung, (pronounced loong) drives all motility in the body (the ability of organisms and fluid to move), including all neural signals and muscular impulses.  It powers the circulation of our blood, respiration, our nervous system’s activity, sensory clarity, memory, the thoughts in our minds, and food through our digestive tract.  Defective rLung manifests from the poison of attachment/desire.

mKhris-pa, (tripa) regulates body heat, metabolism, liver function, blood generation, skin function and integrity, vision, courage, will, and intellectual acuity.  Defective tripa manifests from aversion/anger.

Bad-kan, (béken) maintains our physical structure; provides cohesion and adhesion in the body in terms of physical bulk, body oils and fluids; and facilitates joint health, sleep, and mental stability.  It creates a sense of satiation, contentment, and tolerance and allows us to have a stable mind.  Defective beken manifests from delusion/ignorance/indifference.

Tibetan doctors begin their diagnosis by asking the patient about their medical history and relevant parts of their personal history.  They then examine the color, odor, sedimentation, scum, vapor, and, after vigorous stirring, the size, color, amount, and persistence of bubbles and any deposits in a urine sample.  Next the doctor feels twelve distinct pulses at the radial artery of each wrist for the width, depth, strength, speed and quality of the pulse.  The color, shape, texture, moisture content, cracks, and coatings of the tongue are examined along with characteristics of the eye, such as the sclera (the white outer layer of the eyeball), to further confirm the diagnosis.  The doctor may also look for sensitivity at certain pressure points on the body.  The doctor’s own body is the diagnostic instrument.

Treatment includes behavioral and lifestyle modifications such as meditation which I was already doing, dietary changes, herbal medicines and in some cases moxabustion heat treatment, acupuncture-like needling and/or other physical methods.  Treating ALS and other neuro-degenerative diseases primarily with precious pills is one of the methods used extensively by Amchi Lobsang Dhondup, due to years of observing patient response.

There are several kinds of precious pills.  The one prescribed for me is Rinchen Ratna Samphel, a compound of 70 ingredients that is indicated for, among other maladies, facial palsy and speech impediment.

I take a Ratna Samphel pill once every 3 days to support proper development and function of rlüng pathways, particularly upward-ascending rlüng.  It cleanses the blood, rebuilds bodily constituents from cellular level to tissue level, consolidates and expels excess heat from improper blood formation, relieves tension in the upper body and re-establishes the functioning of rlüng, gut and blood together.  It releases toxins, rebuilds healthy white blood cells, facilitates proper neuromuscular signaling, decreases inflammation and infection and supports immune strength.  It also supports mental stability, stress management and sleep quality.

Mine is a rlungbéken compounded condition.  My high calorie diet is required because my body has a decreased capacity to eliminate toxins/pathogens.  rLung re-balancing requires nutritious, dense foods rich in high quality oils, and my deteriorated béken functions require foods that are easy to digest and that restore the digestive fire which breaks down what I ingest, assimilating what is useful and eliminating the rest.  Persistent bubbles and foam in my urine indicate that my overall béken level is too high.  That my rlung and bekan are disrupted indicates that my condition is associated with the poisons of attachment and indifference but not hatred, which has long been my own diagnosis.

Because Tibetan medicine explains things differently from Western medicine, here is a more detailed diagnosis of my condition.  It includes:

  • Upward-ascending rLüng disruption which impacts movement at the throat, larynx, pharynx and upper esophageal region, the tongue and nose.  This can be triggered by acute incident, traumatic event, or coordinated conditions.  In my case it was allergic reaction to the brown tail moths.

  • Béken proliferation that hampers digestion and metabolic processes.

  • rLüng disruption that affects neural signal trajectories and function.

  • Deficient liver-gallbladder synchronization with the gut which inhibits fat metabolism and overheats the liver and gallbladder.

  • Kidney imbalance resulting in the disruption of all intra- and extracellular fluids, interstitial fluids, serum, lymph, and cerebral spinal fluid, and the related metabolisms and processes between fluid spaces in the body.  This indicates immune compromise, and other disruptions in cellular signaling, lymph cycling, and filtration processes.

  • My gut’s ability to separate the nutritional essence, dangma, from the waste products, nyikma, at all cellular levels is reduced and is not well supported by my liver and gallbladder.  That disrupts my metabolism, impacts regeneration of all my bodily constituents, and causes excess heat and friction at the tissue and joint level.

rLüng needs warming, nourishing foods to eliminate inflammation that wears on the immune system pathways and decreases function throughout body tissues and organs.  Proper metabolism is necessary within the joints and tissues and related organ activity, lymph cycling, waste elimination and so forth.

When I was eating by mouth, I increased my intake of fresh foods and cut way back on coffee and the spicy, sour and salty tastes I love.  Now I take food via a tube directly into my stomach, I’m consuming 2,000 calories worth of soy-casein formula daily plus 500-600 ccs of a pureed mix of organic green (e.g., collard greens), colored (e.g., beets) and sulfur-family (e.g., mushrooms) veggies.  The veggie part of that diet is a combination of Tibetan medicine recommendations and the Wahls Protocol.

I also recently began taking an Oxaloacetic acid tablet daily because a researcher colleague of my Tibetan doctor considers it may help.  I expect I’ll need to increase my current total of around 2,500 calories on which I’m maintaining a weight of 140 lbs as my strength returns and I can do more physical work again.  My doctor will also recommend that I gradually replace more of the soy-casein formula with foods better suited to healing my condition.

I currently exercise in a way that is not aggressive or exhausting.  Our gut needs the support of exercise to stoke digestive heat, promote metabolic fire throughout the body, and get the lymph system better at identifying nutritional essence versus waste.  Intense activity would aggravate the rlüng and heat pathways within my body.  My current program is 40 minutes of work on a cross-trainer, 350+ calories worth, on days when I don’t take a precious pill.  My chief goal is to regain lung capacity that I didn’t realize I’d lost over winter.  I’ll keep building the intensity of that program slowly as my legs regain strength.  I also need solid rest to help align and calm the rlüng.  I sleep 9 hours a night on average.

Nourishing environments are also important, which means I now avoid harsh winds and moist or cool areas that would worsen my kidney heat deficiency, and harsh sound environments that are harmful for rlüng.  I will enjoy warming sunlight as soon as it returns but not overexpose myself to its heat.  I balance my time between people that feed my spirit (face to face and online) and being in solitude.

The pre-conditioning defects in my body’s energy systems that were triggered into ALS by a severe allergic reaction almost two years ago had presumably taken a long time to develop and the disease itself has since done serious damage.  It would be unrealistic to hope for a quick recovery and Tibetan medicine is not expected to restore health quickly in any case.

Amchi Lobsang Dhondup has achieved persuasive results with Multiple Sclerosis patients but he has been treating ALS patients for less time and ALS is different, a nervous system disorder not an autoimmune disease.  He has a shorter history of success with ALS but it’s enough to be encouraging.  My facial, mouth and throat muscles have continued to weaken slowly since I began his treatment almost eight months ago but I have not yet experienced the twitching in other muscles that is the first symptom of motor neurons dying.  Since I’m able to rebuild my strength with exercise, I believe I lost it over the winter not because of ALS but because I got almost no exercise then and I was not able to eat enough.

My treatment program may be slowing the progression of ALS and it’s possible my body is slowly curing itself.  There’s no way to know.  What I do know is I am blessed to be alive now and I will continue to report with equanimity whatever happens in the future.

My ALS Adventure – March 2018

This month I established an exercise program, added live foods to my diet, began taking a supplement that may be effective against ALS and continued to do a lot of reading. 

March 12 – to my family

I’ve built up to 35 minutes on the cross-trainer now, focusing on rebuilding leg strength and breathing capacity, not pushing too hard, and it’s making me feel better overall.  I do that on two days then rest on the third when I take a precious pill.

I’m still pretty feeble but I was able to cut down a 25 foot tree in the corner of the vegetable garden without difficulty and I’m almost finished removing a fallen tree where the rabbits hang out along with the huge wild rose that grew up around its base.  The only problem I ran into was some acid reflux when I was digging up the roots, which I also experienced picking up branches I’d cut off the vegetable garden tree.

I also had a fairly bad reflux an hour after breakfast this morning for no reason I could see and maybe that will continue to be an issue since all my food is now liquid.  I’ll squat to pick things up instead of bending and see what other changes help.  Several more trees fell or have large broken branches after the high winds so I’ll get plenty of practice outside.

I’ve started to add live foods to my diet that can be pureed enough to go down my narrow tube.  My Tibetan doctor gave me a list of foods to eat more and less of before I got the tube and we’ve refined that based on the Wahls diet recommended by a friend.  Dr. Wahls originally developed the diet to cure herself of Multiple Sclerosis then built it into a program that’s proven effective for a wider range of diseases.

Cantaloupe, kale with stems removed, avocado, onions and mushrooms have worked well so far.  Beets, bell peppers and broccoli should also be fine and I’m hoping to strain the seeds out of raspberries.  I have to avoid fiber that’s insufficiently blended and seeds that could clog the tube but other than that it’s just a matter of blending for long enough with enough water.  I was surprised how much water I had to add to avocado.

Another friend sent information about an over the counter supplement, oxaloacetate, that is said to be effective against ALS.  My Tibetan doctor says it could be possibly helpful since it is an important component of the Krebs cycle, which the Wahls diet promotes.  One of her colleagues will review some recent unpublished studies to see if there is convincing evidence that it’s specifically helpful for ALS.  Meanwhile, since she says it would not hurt to try oxaloacetate, I’ll do that.

I’ve been reading for an hour or so after each meal to let the formula settle and I’m guessing I’ll need to keep doing that.  I do a lot more reading on precious pill days and spend quite a bit of time online.  As my mind slowly regains sharpness I notice I’m spending less time following the news and being more selective about opinion pieces.  I’ve been catching up on what turn out to be some excellent books.

 

March 29 – to my Tibetan doctor

My facial muscles are continuing very slowly to weaken but I’ve regained some strength overall and I’m feeling good.  The weather continues too cold to work outside most days but it will soon change and I’m eager for that.  I’m happy and having no trouble maintaining my equanimity.

I began adding veggies to my diet on March 8.  By the 14th I was taking 500-600 ml of pureed green, colored and sulfur veggies every evening and I stopped taking a fifth container of Nutren 2.0.  My weight had stabilized at 140 lbs on a daily diet of 2,500 calories from 5 containers of Nutren but with the added veggies I was gaining a pound a day.  Now on a steady daily diet of 2,000 calories of Nutren plus the 500-600 ml of the three kinds of veggies I’m re-stabilized at 140 lbs.  I’ve had no trouble digesting the new diet and it feels healthier than formula alone.

I began taking an Oxaloacetate tablet daily on the 19th.  I haven’t noticed any results and don’t expect to for quite a while, if at all.

I built up slowly from 25 minutes on the cross-trainer at the start of March on the two days when I don’t take a precious pill to 40 minutes.  The cross-trainer says that’s 350+ worth of calories.  I keep my maximum heart rate at twice its resting rate or less.  I’m focusing more on rebuilding the lung capacity I didn’t realize I’d lost over winter than on leg strength.  As my muscles regain strength I’ll increase the intensity of the workout correspondingly so as to maintain the overall benefit.

I’ve applied to participate in a program to establish the extent to which ALS patients can measure their own vital signs.  If accepted I’ll be able to track my lung capacity and etc.

Restoring my dharma practice has been a slow process after I stopped temporarily while recovering from the tube insertion.  I continue to do two daily sessions of an hour each, starting at around 10 am and 4 pm and my motivation remains strong but I’m much more vulnerable to discursive thoughts and the experience is weaker in general.  My concentration is slowly improving, though, and I have been getting occasional glimpses of new aspects of what’s pointed to by what I’m saying.  I was much less prone to distraction when I was able to chant aloud.

I have to sit quietly for an hour or so after each 500 ml liquid meal to allow my stomach to settle because if I don’t, I’m apt to get stomach contents coming up my throat.  I also have to be careful not to bend forward too far any time I’m doing anything physical because that causes acid reflux that I never used to experience at all.  There’s probably nothing I can do about it but I’ll ask the ALS clinic folks at Johns Hopkins.

A couple of other things I’ll ask them about are a recommendation for an over-the-counter way to ease the nose blockage I often get now my weak lips make blowing my nose impossible, and if there’s anything I can do about the cheek biting I experience most of the time now my cheeks are so weak that they flop between my teeth.  Neither of these is a big problem but I’d enjoy not having the experiences.

I’m still enjoying the extra reading I do while resting but I’m increasingly eager for productive physical exercise, too.

Several people have asked me to write about Tibetan medicine and my own treatment program.  I’m close to finishing a draft based on a combination of research and content extracted and edited from your emails.  I’ll send it to you for feedback before I publish it because I don’t want to mislead anyone.  I hope you’ll have time for that.

Mass Shootings – The Context

I explored how to prevent more such killings after the school massacre in 2012.   Nothing was done then or after subsequent massacres and now we’re horrified again by the massacre in Florida.

Why do politicians text “thoughts and prayers” and do nothing else, and why do we accept that?   Because our culture is steeped in violence.  School massacres are exciting news but they are a tiny proportion of the everyday killing we pretty much ignore.

Around 30,000 Americans die annually from suicide, homicide and accidents involving firearms.  We’re ten times as likely to be killed with a gun as people in other developed nations.

Thirty Americans murder one another every day.  We’ve had 270,000 murders since 2000 and police killed over 12,000 people from 2000 to 2014.

We’ve killed over 20 million people in 37 countries since World War II.  Our military forces were directly responsible for 10 to 15 million deaths in the Korean, Vietnam and Iraq Wars. and in wars where we share responsibility there were 9 to 14 million deaths in Afghanistan, Angola, the Congo, East Timor, Guatemala, Indonesia, Pakistan and Sudan.  We’re waging war all over the world from almost 800 military bases in over 70 countries and most of us have no idea where or why.

To support and extend all that killing Congress voted nearly unanimously to increase military spending to $700 billion in 2018 and $716 billion the following year.  That’s an extra $165 billion over two years, which is more than the entire military budget of any other country except China.  The military spending we’re told about consumes 57% of federal discretionary spending.  Hundreds of billions more is buried in other budgets.  In fact, we spend well over a trillion dollars per year.

We do all this killing because fear and fascination with violence is so deep rooted in our culture.

Our ancestors destroyed those who lived here before and they imported and brutalized Africans to do their work.  In my lifetime, Russian and Chinese communists were going to destroy us.  Since 2001 global terrorism has been the existential threat and now we’re told we must also prepare anew for war with Russia and/or China, which means we must spend over a trillion dollars on new nukes.

Much of what we’re told to fear is nonsense.  Domestic right-wing extremists, for example, killed three times as many Americans as Islamist terrorists did between 2001 and 2015.  We’re twice as likely to be shot by a toddler as by a terrorist.  North Korea’s leaders have a perfectly sensible reason for wanting nuclear weapons – the threat from us.  And so on.

Meanwhile, real causes for concern are ignored.  Shootings of all kinds, accidental by toddler, intentional by alt-right terrorist, or whatever are inevitably commonplace here because we are by far the most heavily armed nation with the loosest gun regulations in the world.

We have 114 million handguns, 110 million rifles, 86 million shotguns and an estimated 1.5 million military-style weapons like the AR-15.  The AR-15 used in school and other massacres, the civilian version of the military’s M4, is designed to obliterate human flesh.  As Florida Sen. Bill Nelson recently stated“I’ve hunted all my life … but an AR-15 is not for hunting.  It’s for killing.”

Why do we need guns for killing?  We’re told it’s to protect ourselves.  In fact, the 2nd Amendment was so we could defend our country without a standing army.  Our Founders said we should not have a standing army because if we did, we’d always be at war .  We’ve proved them right.  The idea that the 2nd Amendment protects an individual’s right to bear arms not just so they can be ready to support a state-sponsored militia dates only from a 5-4 Supreme Court ruling in 2008.

We’re fascinated by violence.  Our heroes have always been militarized.  First it was Minutemen.  It was Wild West gunslingers when I was a boy.  Now it’s Special Ops.  The lone killer who defends what’s right is a powerful national myth.

We support but don’t think about the destruction and killing we do overseas.  We don’t think very much at all, in fact, mostly just believe nightmares fed to us.  The roots of our insecurity are old and very strong.  From them grows our fear and that from that comes our sense of entitlement to wreak violence.

It  will take many, many years to transcend that legacy and we will do it only by taking step after step away from what we now consider normal.  Here’s a step we took.  More than 4,000 black Americans were lynched between the Civil War and World War II.  Then Billie Holliday and others made us stop accepting that viciousness.  She made us wake up and feel.

I’m hoping we’re being woken up now by our children so we will take a new step.  I’m hoping the time will soon come when we will ban assault weapons and make other changes to end school massacres.

My ALS Adventure – About Grief

I’ve been thinking about this from a dear family member:  “I think it’s ok that while “trying to spot where habitual experiences no longer correspond to reality” we also grieve the loss”.

Is grief in fact a healthy response to loss? 

I’ve written before about my Buddhist classmate whose husband had very recently died after a very short illness.  “Many of us grieve for two years or more” I told her.  “I hope you will not suffer such pain for so long”“I’m not trying to avoid grief” she replied.  “I’m bringing it onto my path”.

She was courageously observing her suffering and by noticing and reflecting on her emotions, she was training herself to accept her new situation.

Grieving is not noticing and reflecting but wallowing in suffering.  It is self-pity.

In grief we torment ourselves with dreams of the past and fears of the future, numbing ourselves to the present until at last we’re worn out and we grudgingly accept the new situation.  That’s not healthy.

What is healthy is to notice and feel our experience now, to remain fully alive.  We can feel both the moments of sadness and all the other thoughts and feelings without getting trapped by them.

When one of my grandchildren speaks and I can’t reply, if I just notice my sad feeling then smile and respond in whatever way I can, the sadness vanishes.  Better for me and much better for my grandchild.

It can be like the sadness that sometimes comes even now, fifty years after she died, when I want to talk with my mom.  That sadness is momentary.

When I poured my formula this morning a memory of the fragrance, taste and texture of delicious fried breakfasts arose.   I was sad for a moment because I can’t enjoy them now.  Then I saw Felicity smile.

Grief is wallowing in movies manufactured by our imagination.  We’re so habituated to them that we often don’t even notice when they start to play.  The moment we do, however, we can open our senses and feel our fresh new experience in this moment.

Of course, it takes practice to notice when our movies start up and although I practice diligently, I do still sometimes fall for them.   But I notice them sooner and that’s liberating.

Felicity said it all so much more clearly 🙂

Felicity’s Reply

There have been many occasions when I have grieved, when Martin first received the diagnosis, when he could no longer talk to me, when I was afraid that we might not be together much longer and at all the little milestones along the path of his illness, but I have mostly come to terms with it now.

I realize that Martin is still here, that we can still communicate, and that fortunately the ALS does not seem to be spreading to other areas yet.  The PEG tube has made a huge difference.  I don’t have to worry every time I hear him coughing after eating, afraid that he has inhaled food and will end up choking or with pneumonia.  I don’t have to watch him struggling to swallow teaspoonfuls of food at each meal, and he is getting stronger by the day.

I find it more helpful to analyze exactly what I’m feeling and discuss it with Martin than let an overall feeling of sadness and despair take control.  I’m part realist and part optimist, I’ve always tried to accept what is and figure out ways to make life better for both of us under the circumstances we find ourselves in at any given time.

Interestingly, I found the transition difficult from always being conscious of what I was going to make for dinner and choosing food that Martin would like, to only having to please myself once he had the PEG tube and subsisted on a formula.

I’ve spent the better part of my life taking care of others and it took me a couple of weeks to not feel guilty at just pleasing myself, eating salads instead of a cooked meal for dinner etc.  I’m over that now though I do still miss it at times.