Road Trip – Chapter 3

 

Felicity met a man who told her Devil’s Lake has no inlets or outlets. Its level rises or falls depending on the amount of rain and snow. It was six feet higher a few years ago and in earlier times much of what is now lake was farmland.

The land up here is so flat that there’s little opportunity for drainage. The trees we passed that I thought had drowned did so, but not because of a change in the land, just because there was more snow than usual. 

We stop in Rugby, geographic center of North America, to visit the Prairie Village Museum. Felicity first goes to the restaurant next door to sample home made pie and chat with locals. I ingest my formula. 

An aside: I’m now a fan of the BiPap machine. Felicity says I sleep much more soundly. My airways feel better for the slightly moistened air and I assume my diaphragm enjoys the assistance. 

The museum was great though it’s odd to find so many things that were part of my childhood and in some cases my younger adult life, too. The laundry equipment my mom used was so familiar and as for the tools in the blacksmith shop, well, I’m still using many of them.  Never, even at my best, would I have needed a sausage maker quite so big as this one, though.

The school room was similar to the one in my village but mine had no blackboard and we used slates to write on because paper cost too much. 

We were given a third of a pint of milk every day and lactose intolerance had not yet been recognized so I had to drink the milk, anyway. It was better in winter because I could put it up against the stove for a while to cook it.  The pot-bellied stove here is surrounded by a protective barrier. The one in my school offered no such protection. 

I enjoyed the farm machinery especially, of course. They have a traction engine belted up to a threshing machine. When I was a kid, pairs of them would go from farm to farm with a giant plow. They moved down either side of the field and hauled the plow back and forth between them. Very exciting. You can see part of the one here behind the magnificent yellow hay baler, most of which is made of wood.

The soil in this part of the world is sufficiently friable and the fields are so huge that it was practical to pull plows behind the traction engines. Some of them were gigantic. 

This area was settled to a large extent by Germans who had originally been given land in Russia by Catherine the Great. They were attracted here by the Homestead Acts of 1862 and later under which almost 10% of the total area of the US was given to 1.6 million homesteaders. The sandy loam here reminded the Germans of the Russian steppes. By 1960 they owned 45% of the land in this county. 

The man on the desk tells us what Felicity had also been told earlier, that we should go next to the International Peace Garden. It’s only forty or fifty miles north of here, on the border between the US and Canada. 

It was established in 1932 as a symbol of the peaceful relations between the two nations. That was the year FDR was elected President to lead us out of the Great Depression. It was a time when activists for peace and economic justice had powerful appeal. 

So, here we are now at the campsite, nestled in a dense forest of white birches whose leaves are already yellow. There has been no frost here yet but it will come soon. It’s restful after a day of buffeting by wind. 

Felicity asked if it’s always windy in N Dakota. “It is or it isn’t”.  Sometimes the air is still, other times there’s a strong wind. It’s windy often enough that it’s been worthwhile to deploy many huge windmills. 

We’ll investigate the garden in the morning then cross the border into Canada for the next stage of our journey west. 

Next day – It’s pretty cold this morning. There are a couple of huge greenhouses filled with a great diversity of cacti at the Peace Garden. It seems bizarre in this location but their warm environment is appealing. The garden proper is excellent but we retreat quite quickly from the cold to the RV. 

We head north to Brandon then west on the Trans-Canada Highway. We were advised it would be boring but we wanted to see it for ourselves. 

This southern part of Manitoba and Saskatchewan looks a lot like North Dakota. Of course it does. The border is only man’s idea. As Felicity pointed out, everything we see here is this way because men made it so. There are signs in so many places telling us to be careful to preserve the habitat by not introducing invasive species. But all these crops are invaders. Humankind is the ultimate invasive species. 

The high point on our drive to tonight’s campsite just east of Regina was a field of grazing bison.   Why didn’t I take a picture!

This campsite next to the highway is almost full despite it being the end of tourist season. Most of the people here are working on the pipeline. It’s like drawing up in our covered wagon to a temporary settlement of railroad pioneers long ago. 

A random observation: we saw some overweight people in Minnesota and North Dakota but none of the grossly overweight ones that are so common back east. I wonder why?

Health update: I’m learning to manage my drooling/dryness and my coughing. I was still taking saliva reduction meds while the botox injection took effect and my excessive dryness was because I kept doing that too long. I stopped the meds altogether yesterday. There was a bit too much saliva but I was less prone to coughing. I struck a better balance today but I need to experiment about the time of day to take or not take the meds. It’s also very effective to keep a thick tissue over my mouth to avert coughing. It looks funny but from my point of view at any rate it’s very much worthwhile. 

Snow is forecast for Jasper by the time we get there later this week. We’ll go, anyway. 

We drive into Regina to visit the Governor’s museum where we’re guided by a charming and vivacious docent from Quebec. She and Felicity exchange information, Felicity explaining the science and usage of the English toast rack. 

We read of treaties where the First Nation traded their land for health, education and other services in perpetuity from the fledgling Canadian government. Our docent says the reality is rather more complicated. Nonetheless, the people of the First Nation do seem to have been better treated by the Canadian government which feared uprisings by them than Native Americans were by the US government. They could hardly have been treated worse. 

Then we continued west. After around a hundred kilometers the gigantic, flat harvested fields begin to be interspersed with low, rolling grass covered hills. 

After maybe another hundred kilometers we see brilliant white rows and heaps that look like old snow. It appears to have washed or been pushed downhill from an area of digging. It is potash mixed with salt. 

Potash mining is a major industry here. Almost all of it is used to make fertilizer which I guess is very important because this soil is sandy and it does not look very fertile. 

Another hundred kilometers on there are many fewer cropped fields and much more grassland. Some of it is hayed but the big round bales that are left in the fields are quite few and far between. 

As we drive on, the grassland grows steadily poorer. Many fields have been taken over by what looks like tumbleweed. Beef cattle spread out looking for anything worth eating. 

There are quite a few ponds and some lakes, all very shallow looking. Cattle are gathered in a dried up one too far from the road for us to sure but it seems they are licking salt off the pond bed. 

We pass so many trains. Pairs of locomotives with sometimes a third one in the middle of dozens upon dozens, maybe hundreds of freight cars. 

We also see one relatively spiffy locomotive pulling two passenger cars and I remember spending many hours as a kid with a book about the Canadian Pacific Railway, enchanted by pictures of the train barreling through the Rockies. 

The Railroad’s headquarters is a bit further west from here in Calgary. The railroad was how immigrants came to the Prairie lands. Set up in the early 1880s, it was how Canada’s western territory was opened up. 

We camp just outside Medicine Hat, Alberta and are glad Felicity packed a small electric heater with a fan. 

Next day – In the morning Cousin Alison asks if we’re going to Head-Smashed-In Buffalo Jump. Having never heard of it we weren’t, but now we are.  It’s around 3 hours west of here at our 55 mph pace. 

The land flattens again west of Medicine Hat. Many of the fields are irrigated by the gigantic wheeled sprinklers that rotate round a water supply making those huge round fields you see from the air. 

Every so often yesterday and today we pass an oil pump, usually in the middle of a field. A few continue pumping slowly as if they’ve been doing it way too long. 

We pass a couple of fields of corn. I’ve heard it grows as high as an elephant’s eye in Oklahoma. For that to be true up here, the elephant would need to be lying down.  

Head-Smashed-In Buffalo Jump is where buffalo were “harvested” by stampeding them over a cliff. A too-eager participant is said to have had his head smashed in by going too close to where the buffalo fell.   

Buffalo grazed on these vast prairies and some would wander within range of the invisible drop. They have an excellent sense of smell but poor eyesight. Men would dress in wolf skins and, much like sheepdogs, herd them toward the cliff. 

Buffalo are led by females whose top priority is safety of the calves so, to complement the threat from pretend wolves, a man in a buffalo hide would pretend to be a calf wandering away in the direction of the cliff. The herd would follow to bring it back among them. 

When they were close enough to the cliff, many other men, hidden and dressed in buffalo hides to mask their smell, would leap up and yell to panic the herd. Unable to stop because of the pressure of those behind them, the panic-stricken beasts would tumble to their death. The waiting butchers and cooks would then begin work.  They dried the meat, got the marrow out of the bones, stored the fat in bladders, cured the hides and used the bone for needles.  There was also, of course, a great feast.  The stuffed ones on display might not have fallen for the trap because they can see the cliff edge.

We felt sad for the buffaloes.  The interpretation film recreating the massacre has the protagonists say the bounty demonstrates that they are loved and cared for by the higher powers. Perhaps all hominids have justified their acts in this way. Or maybe this is how white men think and we assume everyone else does, too. 

The Blackfoot hunters were doing this long before they had guns.  I don’t know when they stopped. Native Americans in the US switched to hunting on horses in the 17th century, I think.  It’s estimated there were 30 million bison on the Great Plains in the early 1800s but they had almost all been wiped out by mid-century, primarily by government sponsored slaughtering to drive out the Native Americans who depended on them for food.  The Blackfoot practice left the herds intact.

We’re too tired to take the trail to where the buffalo bones were found. Felicity looks for a nearby campsite and there’s one beside a lake so of course she proposes that one. We have no trouble getting a site on the lake shore because there’s nobody else here. It’s getting cold. 

We’ve come almost 3,000 miles so far, driving every day, so it feels time for a day of rest tomorrow.

Road Trip – Chapter 2

 

We’re close to the shore of Lake Superior again tonight but we’re now in Wisconsin. 

The sand that grows scrubby pines close to the bridge where lakes Michigan and Huron meet and one crosses the bridge to Michigan’s Upper Peninsula soon turned more like Maine, forested hills and swamp. 

We decided against the boat ride yesterday and went to the beach instead. The lake water is so clear and the only waves are wash from the sightseeing boats. So peaceful. The lake shore is limestone worn into strange shapes by the storms. 

On our way today after going straight when we should have taken a right, we stumbled on the Michigan Iron Mining Museum. Fascinating. 

We learned about the man who came looking for copper and was shown a mountain of iron by a native American who considered the Mountain’s spirit so powerful that he would not go too close. The prospector was thrilled by the sight. 

Getting iron ore from there to factories further south was difficult but pretty soon the mountain was gone and they were blasting tunnels below ground. It was very high quality ore. 

Surveying the Upper Peninsula was also a challenge since it was entirely covered by dense forest and swamp. Making it more difficult, the iron ore deposits played havoc with compass readings. 

Mining here is now on a giant scale and nobody is living as the native Americans did. Few if any would want to. Native Americans are operating casinos, the tourism market is strong and the mining company must renovate the land they despoil. 

Another thing we learned at the museum is why pasties are a feature in this part of the world. It was impossible to get enough Americans to work in the mines so waves of immigrant laborers were brought in. First to come were miners from Cornwall, England where the tin mines had recently been exhausted. Cornish pasties that were their staple diet proved to be a big hit with everyone. 

Based on the past 24 hours my advice for others with a feeding tube is to puree favorite foods as an occasional treat. The 3 oz of smoked fish I ate last night were still giving me pleasure this morning so we bought 3 lbs more. 

In other news my dribbling is definitely growing less.  It occurred to me to wonder if that makes it less likely that my next incarnation will be as a dog? Felicity said she will bring it to my attention if I start sniffing posts. 

Next Day – We drove up the west coast of Lake Superior, stopped at Meyers Beach, continued on to Duluth, MN then drove west to Bemidji. 

It was a splendid sunny day, around 80 degrees. Felicity painted two fine watercolors at Meyers Beach while I did a rugged two mile walk through white birches, maples, poppels and pines to view sea caves and a rock bridge. 

It seemed quite a long way to the overlook but I was pleased to find I was not short of breath. My breathing was normal on the two mile walk back, too, but my legs felt tired. 

I remembered my first trek in Iceland while I was still piloting a desk. By the end, my thighs had given out entirely. My hamstrings were not completely exhausted though so I was able to shuffle backwards up the steep inclines. 

On the outward walk I heard only the tree tops moving in the breeze. Coming back I heard what sounded like the growl of a bear. I was so hoping to see one but I didn’t. 

There’s little but trees and occasional small cattle farms to be seen from the coastal road to Duluth. It must be a long way to school and that’s likely the only place kids would see friends. It must be even more isolated in winter and they are long up here. 

The road west to Bemidji is also mostly through forest and it’s mostly very flat. At one point small dead pine trees stretched far to the south. I think they drowned. A couple of small rivers showed the water table to be very close to the surface and the ground was densely covered with rushes. I imagine drainage was never good and something changed to slow it even more. 

Today I understood what triggers my coughing and I made a start on a solution. My nostrils grow more restricted over the course of the day because I can’t blow my nose. By afternoon my mouth drops open to get more air and that triggers coughing. 

Pressing a thick tissue against my lips forced me to keep breathing through my nose for a couple of hours but so much catarrh built up on the back of my throat that in the end I began coughing continuously.  Using the Bullfrog machine (it blows air hard into my lungs then sucks it back out making me look like a bullfrog) when we got to the campsite pretty much cleared that problem. 

Tomorrow I’ll try spritzing my nostrils with water to clear them at least partially at lunch time then I’ll try to keep my mouth closed all day and bullfrog when we stop for the day. 

Next day – We liked Bemidji but this is when I discovered that my energy reserves are now very low. 

We drove south to see the head waters of the Mississippi, which drains out of Lake Itasca.  The Mississippi starts on the right of the rocks below.

Felicity had bought tickets to see a performance of “A Streetcar Named Desire”.  I felt exhausted and the botox injection to my mouth has now completely dried up my saliva. We returned to the campsite so I could rest, stopping only to buy anti dry mouth remedies. I tried the spray too enthusiastically then slept all afternoon. 

I had enough strength to drive to the theater but then it seemed wiser to stay in the RV so I wouldn’t make noises or have coughing fits in the theater. It was a good call. I slept through the entire performance, which Felicity says was excellent. 

Then I slept soundly all last night.

Next day – I feel good again. We set off for North Dakota. The view from the road is of trees interspersed with beef cattle farms. The land is flat with many small lakes. It reminds me of Sweden where I spent as much time as I could working. It was never enough. I see why folks from there, Denmark and Finland liked it here. 

As we proceed west the land grows even flatter and much more of it is farmed, chiefly grains and hay at first, then more diverse arable crops. Sugar beet is popular. We also pass an asparagus farm and one that raises “exotic meat” including ostrich. 

We stop for gas and coffee, then at a hardware store. Everyone is so friendly, so different from New England where we lived so long. 

Now almost all the land is farmed. Only the areas of standing water surrounded by bullrushes are not farmed. It looks rather like Essex on England’s southeast coast which is also flat and in places waterlogged. 

Further on still the fields are gigantic, stretching all the way to the horizon.   The most common crop is soybeans. The soil does not look very fertile. Again there are plentiful areas of standing water near the road. 

We stop for the night at Devil’s Lake. The approach to the state campsite is a road across the water making me think lake is a more dignified name than is warranted. At the campsite, though, guys are preparing to haul their fishing boats away so the water is evidently deeper here. 

And now it’s time for smoked fish and a fragrant beer  🙂 There’s a strong and gusty wind but we’re well protected by trees. 


Road Trip Chapter 1

  

September 6, 2018 — We drove west from Gettysburg through fine farm country and beautiful mountain forests, passed the sign for California and stopped in Washington. All in Pennsylvania. Tomorrow we’ll do some exploration in Pittsburgh which is just down the road. 

September 7 and 8, 2018 – I hadn’t yet started writing daily notes or taking pictures so these two days are lost 🙁

September 9, 2018 — On our way to Toledo, Ohio we stopped off by chance at the village of Zoar, a German village. 

The Lutheran Church treated dissenters harshly in early 1800s Germany and those in the south suffered greatly also in the Napoleonic wars.  When in 1816 the king allowed emigration, 300 villagers from there who practiced a semi-mystical form of Christianity with a great emphasis on individual piety left for America. 

Helped by a loan from Quakers they bought 5,500 acres in Ohio but their first winter was devastating so, unable to survive independently, they formed a community where all worked for the common good and there was no private property. 

Three years later they forbade married couples from living together. Their religion required celibacy but the practical issue was they needed the women as well as the men for work in the fields. Pregnancy and children were unaffordable. Marriages were allowed a few years later but the children were raised in nurseries and saw their parents only in church.  They were schooled in German. 

The community established a flour mill, iron furnace, tin shop, wagon factory and other businesses and developed steadily until its elected leader died in 1853. Although nobody  with the same charisma and administrative abilities emerged to replace him, they kept going for another 45 years. 

By then the third generation had seen how others were living and they wanted freedom and their own things. So the community’s assets were divided up and distributed to all and Zoar became a village surrounded by farms just like any other. 

I was struck by how German it all was. The quality of the buildings and cabinetry is very fine, simple designs executed with precision. The children were taught in German. 

The Civil War was a great challenge for the community because they were pacifists. With no better choice, they paid other young men to fight for the North instead of their own. 

I thought about WW1. Schooled in England and knowing my dad lived in Ohio until he graduated from High School, that America had gained independence from British rule and Americans speak English, it seemed odd that it took so long for them to join the battle against Germany. How ignorant we are if we don’t travel.

September 10, 2018 — Tonight we’re in Munising on Michigan’s upper peninsula on the south shore of Lake Superior.  

Driving just over 1,000 miles so far has turned out to be quite relaxing. I feel the same as I used to before ALS, not conscious of my weakness. If anything I feel better, apart from the dribbling and coughing, because I set the cruise control to 55. The engine and drive train are 23 years old and they have a heavy load to propel so it’s good to be gentle and I can relax along with them.  Here’s our home for the next couple of months:

Upper Michigan feels like Cape Cod recast on a giant scale and before people came. There are some settlements, of course, along with abandoned properties along the way. A big hand lettered sign just off the highway read: “WIFE COME HOME. WILL SELL HOUSE”. Beside it was another sign: “OBEY WIFE OR ELSE”. 

Why do I say it’s like Cape Cod?  Because we always try to fit our new experiences into existing concepts. 

I’d never thought much about ice breakers. We toured one today, the biggest ever, built in 1943 to keep Detroit’s and other factories supplied most of the year. It had a crew of 75. 

It has six giant 10 cylinder diesel engines that drive electric motors which drive the propellers. The ice on the Great Lakes tends to be a couple of feet thick and it can easily be many times thicker after storms break it up and pile it in layers. Decoupling the diesels from the drive train lets them stay at the same high rpm despite varying pressure at the bow, the same idea as railroad engines. 

It’s obvious but I also hadn’t thought about what ice breakers actually do, open lanes just wide enough for merchant ships and keep running back and forth to keep them open. This ice breaker was built too wide for the canals between here and the ocean so it could not be captured during the war. 

I notice I get pleasure from roadside billboards advertising meatloaf dinners, egg, bacon and home fry breakfasts, footlong spicy Italian subs for lunch, and so on. It doesn’t matter that I can never eat any of them again. 

Up here pasties are popular. I love pasties, but…  Smoked fish is also available all along the shore. I do hope to puree some of that. The fragrance of smoked fish will surely rise up my throat. 

We’ll stay here tomorrow and go on a boat ride to view rock formations and waterfalls. 

I’ve been able to sleep all night with the BIPAP breathing machine the last couple of nights. The mask compresses my mouth so it’s hard to avoid biting the inside but I do breathe better. 

I think the botox injection I had shortly before we started this trip is beginning to cut the amount of saliva I produce. 

So all’s well. We’re having a good time 🙂

My ALS Adventure – September, October and November 2018

 

We decided to go on a long road trip while I can still walk.  My neurologist who had me hop on each leg thought I’d be OK for at least a couple more months, and the ALS clinic folks told us where we could get a folding walker and even a wheelchair if he turned out to be wrong.  

It would have been costly to rent an RV for a couple of months or more so it seemed better to buy one but it’s unlikely i’ll be able to use it next year so it wasn’t worth buying a new one.  A lot of online research followed by a day of driving around to inspect candidates led us to a 23 foot 1995 one whose layout we liked, that was in good shape cosmetically, seemed mechanically sound and was in our price range.

I built shelves in one of the coat closets, made a low fence for the sleeping loft over the driving cabin so we could store stuff there and not have it fall on us, installed a backup camera, fixed the loose supports on the roof ladder and assembled a box of tools.  We packed an assortment of clothes because we’d be in hot, cold, wet and dry areas.  Felicity got a big collection of maps and guide books from AAA.  And then there was all the other stuff that we would or might need.

After a few days delay waiting for additional supplies of my medicines we set off on September 6.  First stop was Pittsburgh because Felicity wanted to visit an art museum there.  We decided each next step pretty much day to day.  Friends had already suggested several places we should visit and we hoped for more suggestions along the way.

Our only firm plans were to stop on the West Coast to visit Doma and our friends who are hosting her, see my cousin from England and three or more friends there, and visit my cousin and his family near Atlanta who I’d never met.  The only schedule was to be on the West Coast in the first half of October when my English cousin would be there.

I decided to email my family every few days so they wouldn’t worry about us.  That turned out to be like writing a travel journal but more enjoyable because I was thinking about what they might find interesting.  I’ll now assemble them into lightly edited posts to give a sense of what intrigued me about the very different environments we visited, and continue my effort to share the experience of my ALS progressing 

I lost strength during what turned out to be a 10,000 mile, three and a half month journey but I didn’t need a walker.  Felicity persuaded me to start using a hiking pole for balance toward the end although i’m not quite at the point where it’s really necessary.  I do need a neck brace, though, because my neck muscles are too weak to hold my head upright by the end of the day. 

Felicity kindly let me drive the whole way because that was the one physical activity where I still feel the same as I always did.  I’m not having trouble accepting my slow weakening but doing anything I’ve always enjoyed still is enjoyable.

I hope you’ll enjoy Road Trip Chapters 1 – N and I hope they’ll be helpful if you have ALS  or if you know someone who is living with something similar

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.