My ALS Adventure Aug 2019

Aug 3 – yes, it would just fit. It was only when I was picturing how to maneuver it into place that I recognized the problem. I wouldn’t be able to move it because my muscles are too weak.  This is the first time ALS has entered my dreams.

Since listening to the bardo talks I’ve been trying to be aware when I’m dreaming. It’s hard enough to get outside my head when I’m awake and I’m skeptical about encountering visions after my body dies but the more aware I can be the better. 

I slept well after a very stressful day yesterday. We had run out of my food formula so I went back to Ensure to tide me over. My gut has lost the ability to digest it though so I got little nutrition on its way through. 

Aug 6 – I didn’t want to get up, not because I felt bad but because I was enjoying lying there, watching thoughts arise. Our universe appeared as a soap bubble that was expanding, not because someone was blowing into it but driven by heat from a stupendous explosion  Then I was inside the bubble where the skin was no longer visible. 

Back outside looking at it was when I realized there never had been a skin. I’d seen it because of my human concept that everything has a skin. There was in fact no difference between what was inside and outside what I thought of as the universe. 

Yesterday, Felicity got me an Apple watch. She was worried that I might fall while she is out if I don’t have my phone with me. It’s an iPhone Plus, quite large, so I usually leave it beside the chair when I go to the toilet. I can text her from the watch and it has many other apps that I haven’t yet explored because I was tired after a lovely weekend visit by Mark and Julie. 
I asked Mark to explore in the attic where I can no longer go and try to find the second and third autobiographies my dad wrote. I posted on my website the one he wrote when he was 50 and was recovering from jaundice but I’d never read these.   

Dad wrote the second one when he was a bit over 70 and was with us after my step mother died and the third one after she died and he married my mom’s youngest sister. He was almost 80 then and happy.  It tells what he did in England after High School in Ohio. I only knew fragments from that time and the 1930s and ’40s are very interesting. 

Aug 7 – again I was reluctant to get up because I was enjoying lying in bed. It’s lucky that I enjoy using my mind since my body is increasingly useless. I spent most of this morning thinking through investment suggestions for now and after I’m gone. 

Aug 8 – last night I tried out the external catheter. I enjoyed not getting up for the toilet but the catheter soon came off — they’re designed for guys who’ve been circumcised. I didn’t know I was peeing in my absorbent pants. It wasn’t a problem, though, so I’ll try using a diaper tonight. 

What was a problem was the protective pad where I lie. It has a high friction surface so it was very hard to make even slight movements for comfort. I woke often and stayed awake in discomfort for what felt like hours. Felicity will put it under the sheet tonight. 

Aug 9 – I’ve been in a rapid weakening phase recently. For me it’s a new challenge, unwelcome but something to which I must figure out a practical response. For Felicity it’s a trigger for turmoil because there’s usually nothing she can do to help. It’s easier for me. 

I slept normally so I don’t feel unusually tired this morning. It was hard but possible to pee in bed when I thought I was using the catheter but it’s worrying with a diaper. Childhood conditioning is very strong. I went back to the commode. I’ve improved my leg flailing technique to sit upright 🙂
This afternoon the fish were feeding very actively on insects on the pond surface. They’re coi. I’ve only seen them once because the water is always muddy. Winter was ending and the ice covering the pond had just melted. Twenty or more golden fish, many over a foot long, were frolicking in the shallows where the water had warmed. 

Aug 10 – an unfortunate start to the day. I made myself stay in bed with a diaper all night but got up to use the commode before dressing. I sneezed violently on the way back to my clothes, over balanced and fell. I was unhurt but it was noisy. Felicity helped me get upright again which wasn’t easy for either of us. 

Aug 12 – ok, I did bruise my right shoulder, elbow and hip but I didn’t break anything. I wonder if I could have gotten upright after resting long enough. I’ll try even harder not to repeat the experience. It left me tired the last couple of days but I think I’m back to my latest normal today. 

A funny experience this morning. I wish I knew how so I could repeat it but I went until 5:30 without needing to pee. I decided to go for the commode but when I began struggling off the bed my flailing leg collided with a bunch of pipes. It took a little while to realize Felicity left a walker there for me. 

By the end of the day I know what it means to be on your last legs. 
Aug 13 – Bonnie came to give me a bed bath. Now she and Felicity are talking and laughing in the next room. I’m experiencing so much kindness. It comes naturally to all these people who know my circumstance. They want to alleviate suffering. 

It suddenly strikes me how different the world would be if we recognized that everyone is suffering. It’s not the only thing we do but we do all suffer. If we felt that truth, how kind we would all be. 

It’s always said that you can’t take it with you. There’s more to it than that. When we’re gone, things we cherished may not be wanted by anyone. I just wrote the story behind my mom’s typewriter. She died over half a century ago so Felicity is the only other one who even met her. It’s not just that we can’t take our possessions with us; we can’t leave our instructive memories behind. 

Aug 14 – walking is only possible now with a walker and it’s a very slow shuffle. My legs support me only if my thighs are directly over my calves because the muscles are so feeble. In bed I don’t have the strength to lift any of my body. All I can do is drag myself to where my legs are almost off the side, claw myself onto my side and flail my leg, trying not to run out of breath until momentum lifts my trunk. 

I do experience frustration sometimes but not self-pity or fear of what’s to come. Pretty lucky, eh?  It’s temperament inherited mostly from my mom amplified powerfully by Buddhist practice.

Nonetheless, it’s disconcerting that walking, which I used to do without thinking, is now difficult and dangerous. 

Aug 15 – this was by far my most difficult morning so far. I was exceptionally weak and walking was almost impossible. The nurse came on her weekly visit and found my blood oxygen level to be 88% and my heart rate a bit high at 142. After sitting all day and a long nap I feel less tired this evening but I asked mom to feed me. That was so much easier. 

To end this update on a high note, though, I just got a card with lovely greetings from my fellow students in Cooperstown NY. 

Aug 17 – yesterday and today are my most challenging so far. I got up yesterday with much difficulty and help from Felicity, considered if I really was ready to get dressed and decided to lie down again. I’ve been in bed ever since.

I don’t have the energy for anything other than lying down and I can barely move as I lie here. It’s as if I’m paralyzed. Being able to walk only with a walker and very slowly was much easier to accept. This is a whole new level of challenge.

Aug 18 – I’ve never been able to hover so I don’t expect to get closer to the head of the bed by flying. I do expect to get there using leg and arm muscles but they are no longer strong enough to move me. To my surprise I don’t know how I would have done it anyway. I never thought about how to do such things. I just did them.

I do sometimes feel a flash of annoyance when I can’t do something. I try to just experience the feeling, not dwell on it or let it trigger thoughts. What’s harder is when I can’t communicate what I do or don’t want to Felicity or she takes longer to do something than I expected. Then I feel bad because I felt annoyed at her. The root of all these problems is having expectations.

Aug 19 – that was scary! I’d been watching a movie for an hour or so, on my back with trunk and head raised a bit. Suddenly, something happened in my throat and I couldn’t breathe. I clawed myself onto my side, wrenched on my nostrils and tried to inhale. After half a dozen or more tries I got a little air in. It felt like I was a goner.

I lay awake more than four hours after that keeping a trickle of air coming in. It stopped again once. After the four hours I nodded off, woke for a while and so on for another seven hours. My body feels like it has a pretty weak hold on life.

Aug 20 – slept soundly most of the night and feeling better. Now trying to breathe deeper to get my blood oxygen level up.

Aug 23 – I dozed briefly a couple of times the night before last but I was awake every hour from 10 to 9. I couldn’t text Felicity because my glasses fell on the floor so I couldn’t see. She wears the Iwatch now because it was too small for me to see at night.

The exhausted feeling as I keep lying here is a bit unusual because it doesn’t result from using the muscles. It feels subtly different.

Bonnie came to give me a bed bath but I was too tired. She asked Jen the nurse to check on me. My blood oxygen is 86 today. I will almost certainly be unable to breathe within a month.

Aug 24 – my last meal was late yesterday, it was followed by a throat spasm and blocked nose, then five hours trying to get a dependable air flow. After a shorter sleep, my nose is clearish then I feel slightly nauseous all morning. We decide to cut my daily feeding from 2,000 to 1,500 calories. Nurse Jen later says we can drop it to 1,000.

Aug 26 – there’ll be nothing to learn from further daily accounts of those kinds of symptoms so I’ll end that now. Nurse Jen suggests a different approach to my nose blockages tonight. I’ll stop the dribble controlling medicine because it dries my nose as well as my mouth. I’ll cut the Sudafed that helped my nose a bit but also made it hard to sleep. And I added the morphine and anxiety meds all ALS patients get near the end. A little morphine slows my breathing cycle a bit which makes it more effective. The other one counters the body’s anxiety when breathing grows hard.

Aug 27 – I slept well for 5 hours, a breakthrough and my nose has stated clear all day!

My body has lost the ability to regulate my temperature. I keep sweating and throwing the bed clothes back then covering myself for some comforting warmth.

Aug 28 – a miracle! I slept 7 hours straight last night!

I learned something everyone close to death should do. To make it easy for Felicity to let my friends know I’ve gone I sent a short email to her and all my friends that she can Reply All to when the time comes. I asked them to Reply All to her with reminiscences she would enjoy.

What followed is a flood of loving emails that are delighting both Felicity and me and which I never expected to see. It brought to mind one of Bryan Bowers’ songs –

Aug 31 – wow! my teacher, Phakchok Rinpoche is sending his cousin — Tsangsar Tulku Rinpoche — to visit me for one or two days. Rinpoche will likely do prayers and puja and perhaps also give some teachings. I’ve been told that Phakchok Rinpoche considers me a good student but this is amazing. I feel so deeply honored and blessed. He will be here tomorrow and the next day.

My ALS Adventure – Jul 2019

July 1 – given how long it takes me to walk to the bathroom these days it’s a good thing I know how it feels being on a long trek. 

I tried breathing steam with eucalyptus oil to clear my nostrils. It doesn’t seem to make any difference. Last night I had to take the BIPAP off because I could breathe only through my mouth.

Since we hope I can die at home, dry ice will be necessary to keep my body cool before burial. Felicity finally found a source. Someone delivers it to this area twice a week because many Mennonites live here. 

President Eisenhower was raised as a Mennonite and he retired here. They are pacifist but he joined the army to support himself. My dad was appalled when he was elected but I’ve had a growing sense for many years that Ike was a good man. 

Jul 2 – For the first time in months I slept uninterrupted for five hours. My gut really is working almost normally again. 

Jul 4 – I sat on the deck on my wheelchair this morning. The angle of the seat, the back and the leg support are independently adjustable so I could get comfortable and make adjustments periodically. It’s a fine machine. 
The adult male peacock hung out on the railing close by, preening and looking about. His wife and son ambled round the lawn hunting insects.

Jul 5 – we’re aware of the importance of our leg and arm muscles but I never thought about my speech depending on them. I also hadn’t thought until recently about my need for muscles to move my bowels or get out of bed. This is quite an education. 

Jul 6 – I realized in the end that if I could brace my neck vertical, it could support the weight of my head like before. I researched the possibilities on Amazon and got one with a rigid plastic frame that is supported on my chest, shoulders and back. It works!

Jul 7 – my neck was tipped forward a little – maybe I should try the same neck brace for a longer neck – but I went all through the rabbit and deer area, down the side of the field then watched a muskrat scurry along the pondside and swim to the young willow whose trailing fronds hide its burrow. My head jiggled over the bumps but it felt safe 🙂

Jul 8 – I keep repeating the verse and reflecting on my aspiration to attain enlightenment and reach the state of Buddhahood to benefit others. I used to try to imagine enlightenment but now the word seems misleading. Buddhahood is more clear. 

Sixty years ago when I read “Three Faces of Eve” I realized I have no fixed self but, utterly self-centered as I nonetheless remained, it did not occur to me that the same is true for all of us. It took so long to see the need to shed my mental habits so my actions could more consistently arise from the basic nature of all beings, kindness. 

I was 35 when, as I retrieved a Frisbee from inside a yew bush, I saw red berries. I was astonished to learn that Felicity always knew they were there. Turned out my eyes have very low sensitivity at the red end of the spectrum and very high around yellow so I don’t see red against a green background. 
What if I was sensitive only to infra red? I’d see the bush as if through night vision goggles. Or what if I was in a house fly’s body?  Or a brontosaurus? The yew bush appears differently to every perceiver and it is also changing all the time, growing and with bits falling off, but in each moment, along with the myriad ways it appears to observers, it is exactly what it is. 

Jul 12 – I ride all round the yard with long pauses to enjoy each view. Although the adult peacock has lost most of his tail feathers in the last few days, he still stands in the driveway preventing vehicles from invading by fanning the few feathers he has left. 

Jul 14 – I can see more about how my body works now my muscles are so weak. The formula does not drain from the syringe into my stomach, for example, I have to expand and contract belly muscles. Breakfast took a long time this morning because those muscles are now so weak. 

Felicity asked if there are any foods I crave. Nothing as strong as that but happy memories of pork rinds do come to mind pretty often. 

Jul 15 –  I need a lot of help to shower now and it’s hard on both of us so we asked a hospice person to demonstrate how to wash me in bed. It went well and she said she’d be happy to come back regularly, so we accepted with gratitude. 

Jul 16 – levering myself up from my armchair just now brought a big smile to my face as Dr. Strangelove’s “Mein Fuhrer, I can walk!!” came to mind.

Jul 19 – I didn’t want to get up this morning and it was the same yesterday but I feel less tired today which makes everything better. 

Anam Thubten used to say we’ve woken up in a five star hotel In beautiful grounds. The sun is shining, leaves are fluttering gently in the breeze but our roommate, Mr Ego, keeps talking. This morning he was worrying if I would really enjoy being awake now my muscles are so weak.  He was distracting me from right now with his worries about the future. 

What I suspect set him off is the muscles in my hands have shrunk markedly. They don’t feel different but I’m not using them for anything that requires strength. Life will be much less enjoyable when I can no longer type. I’ll have lost the ability to communicate. 

Jul 20 – no mental problem getting up today, just physical difficulty. My weak abs make it impossible to sit up and my arms are not strong enough to push myself up. I struggle round so I’m across the bed with both legs mostly off the edge then swing my left leg down hard to lift my trunk up and my right arm behind me to stop myself falling back. It takes a few swings to get solidly upright with both feet on the floor. Adaptability!

I cruise round the yard for an hour this morning. It’s already in the high 80s. Swallows are speeding low over the pond scooping up insects and maybe tiny fishes.  A deer only ten paces away bounds up in the tall weeds in the field. This wheelchair is very quiet. 

This afternoon I couldn’t grip the jack tightly enough with my right hand to pull it out of my phone. I managed with my left. If you’re right handed ALS will weaken that side of your body first. 

Jul 21 – when my fingers give out I will also be unable to read the news. I’ll have less to think about and I’ll feel disconnected from the world. I’m not sure how I will be able to read books either. But I can sit outside and watch movies inside and I can do spiritual practice. 

Jul 22 – an owl was hooting from the trees to the south when I woke deep in the night. 

I must go ever more slowly to keep my balance. Several times a day my legs start jigging up and down an inch or two, sometimes just the right leg, sometimes both. My limbs all work still but very weakly. If I had to guess I’d say I’m unlikely to be around next year. 

Four friends so far have asked if I would be willing to talk with their friends with ALS. My key suggestion for patients is to focus on what you can still do. It’s OK to notice things you can’t, just don’t dwell on them.

For care givers my emphatic advice is to get the patient to sign on with Hospice.  No need for or benefit from waiting. The practical and emotional support from a nurse who visits every week, gets to know you both and knows how it is for others in your situation is life changing. 

Jul 23 – my physical energy is the same or a little less from one day to the next but my mental energy fluctuates up as well as down. It’s good today and I always feel weaker after a nap so I’ll skip it today.  I’ll also have some coffee in my breakfast. 

This has been a very good day. I reviewed and posted about the news, worked more on updating my investment advice, read more of a novel, continued a dialog about how fundamental reality may work and how the relative form we humans perceive is also real, responded to other emails and watched a movie. 

Jul 25 – I had good mental energy again yesterday, did not nap, and I spent the day much like the one before. But I had a coughing fit in the afternoon. I get them occasionally. I imagine they’re triggered by a buildup of saliva rushing down my throat. 

This fit was much worse than previous ones. I couldn’t stop it. Liquid swilled down my nose so I couldn’t breathe. I couldn’t get my mouth open either. Mounting pressure in my abdomen forced a bowel movement. A little air began to creep in when I dragged my nostrils very hard to the sides so I didn’t pass out but many minutes passed before I could get up. 

At bedtime my legs were extremely weak but I was able to get up and go to the toilet during the night with no more difficulty than on previous bad days. It’s midday now and I feel pretty good. 

Could coffee at breakfast the last three mornings be causing diarrhea? I won’t have any tomorrow. Again no nap today but I didn’t feel up to going outside. Hospice got me a commode to make nights easier. 

Jul 27 – my guts have been behaving well but I’ve had less energy. I needed a nap yesterday and I didn’t have the energy to continue aligning the Tibetan Buddhist wheel of life with quantum physics. No nap today. Quite a productive day. 

Jul 28 – When I woke last night my nose was blocked. It doesn’t happen when I sit in my armchair so I raised the head end of the bed more. Saliva drains better and I don’t cough if I lie on my right side so it was a bit uncomfortable having my trunk raised while my legs were horizontal but my nose freed up. Buddha is pictured lying on his right side when his body died so it’s also quite propitious. 

It’s a beautiful day and I feel good this morning so I’ll see if I can drive the mower. 

I can!  I needed help to get on and off but I mowed the whole area round the pond, the strip alongside the field, then a path back through the rabbit yard. It took an hour and a half and it was easy. The mower is spectacular. The grass was anywhere up to 18 inches tall and succulent. Now I can drive round the whole yard again in the wheelchair. 
I needed a nap and I’m tired this evening but that was so worth doing. 

Jul 29 – I drove all round the yard enjoying it’s peaceful beauty. The thinning and transplanting I did over the last few years was good but more needs doing now. I’m so lucky to have done all that acceptance and impermanence practice. A disease like mine must be so hard for anyone who hasn’t. I get frustrated sometimes but I am happy mostly. 

Jul 31 – today, however, had a difficult start. I hurt my belly while flailing my legs to lever myself out of bed. Having to get up  to pee every couple of hours means I must do a lot of that. Fortunately our wonderful hospice nurse came today. She suggests I try an external catheter so I won’t have to get up at night. That will make a big difference if it works for me. 

My heart rate is around 80 after lying in a recliner for a couple of hours. It used to be in the high 50s. Less oxygen gets into my blood – 91% just now – so my heart has to work harder. My blood pressure is good at 128 over 64. I was never interested in such things and haven’t much interest in them now either haha. What really is interesting is how much better I’m feeling three hours after getting up 

To close the month i just have to brag a little Do you remember the summer kitchen I started to repair? The foundation under the north wall had rotted and the weight then being supported only by the roof beam broke it, so the roof hung down eighteen inches in the center.

i cut down the tree, installed a new foundation, jacked the roof beam back up — a little bit day by day — repaired it and a broken joist, replaced the rotted out bottom four feet of wall, hung a window and rehung the door. I A also made a lean-to firewood storage area. My muscles gave out before i could repair the floor but i’m happy with what I was able to do.

Happy Birthday To Me

I’ve recited the words so many times thinking I understood what I was saying then suddenly, as I lay in bed saying them first thing this March 25th I really did see what they mean.

It’s like we see the moon when it’s full, then we use a telescope and that’s an entirely different experience.  

“As all the conquerors and their offspring of the past 
Resolved to reach the unsurpassed supreme enlightenment
I will also reach the state of Buddhahood
To benefit my mother beings equal to space.”

Enlightenment is when what my senses perceive is no longer distorted by my concepts and emotions. It’s when I am aware of everything just as it is. 

Then, when my awareness is entirely unobstructed, I can behave as a Buddha. No selfishness. No acting on ideas. Just acting kindly, doing what truly helps. 

What a wonderful birthday experience.

I’ve written about birthdays before. It strikes me now that they celebrate a separation. March 25  is when my body separated from my mother’s in 1944. April 20 is when in 1970 it separated from its birthplace, England. March 25 this year is when my mind separated from another of its veils. 

When I was introduced to the poetry of William Blake in High School I knew immediately that he saw reality more clearly than anyone I’d encountered before. “The universe in a grain of sand”. But what did he see and how had it happened?

I read other mystics, Christian, Muslim, Hindu and more. They were all seeing the same thing but I was no closer to seeing it myself. I read Gurdjieff, Ouspensky and more. I was going to need a teacher but how to find one, especially one I would be willing to follow?  And it all seemed incompatible with earning a living, anyway, which was my growing worry.  

I was very lucky to stumble into the computer world soon after I left school and I enjoyed almost forty years doing all kinds of things there. It was only when I left it and began trekking in the mountains of Nepal that I resumed my spiritual quest. 

By then I was no longer searching for a different experience of reality. My goal for several years had been to transcend my selfishness. Now I wanted to understand if spiritual practices accounted for the gentle, respectful and cheerful culture I saw in the mountains and if so, I wanted to do those practices. 

I was not mistaken about the positive impact of the spiritual practices but it took me several years to find a teacher, then several years of doing the practices before I noticed any change. 

I was able to continue because I’d found a teacher who is a compelling role model as well as a very practical guide. He is encouraging or fierce depending on what I need at different times and he is very specific about what I must do. 

My glimpse of the enlightenment that enables Buddhahood is something I will likely only ever glimpse.  But as I continue to identify and shed my concepts and habitual emotions I will glimpse it more often and act more often with kindness. 

For as long as I live I must keep practicing because emotional habits and the stories going with them that make us act violently, lustfully or with cruel indifference have very deep roots.  

This year’s birthday gift continues to inspire me as I keep stumbling on toward Buddhahood. 

My ALS Adventure – January 2019

To my family Jan 22 — When I retired I told my staff I’d listed all the things I wanted to do and had discovered I’d be 145 years old before I finished. So it’s quite an adjustment after a long and mostly very active life to get used to being unable to do almost any practical project. 

It’s usually not frustrating or disappointing, just a big change and I’m used to those.   I’ve always enjoyed reading so now I do more. I’ve also started watching opera on YouTube in the evenings and I’m enjoying that, too. 

If it becomes too hard to read or operate my phone and computer I’ll do more Buddhist practice and I’ll keep doing it in my practice room for as long as I can climb the stairs. I’ve reestablished one hour-long session per day. Two would be better but I’m more tired than before our road trip.  

I’ve been tired ever since we got home.  I’m pretty sure I caught the bug that was making Felicity tired but I suspect I’m mainly at a new level of weakness. 

It’s two and a half years since my first symptoms and the life expectancy of ALS patients averages two to five years so it would be surprising if my body kept going for more than another year or two and for sure it will continue to lose function, so I’ve been giving that some thought. 

I had the feeding tube installed a year ago because I was still relatively strong but I doubt I will want more such things to prolong a life that will become more and more of a burden for Felicity and less and less happy making. 

I was just put me in touch with a guy who has ALS and is taking Radicava infusions. We’ve had ALS about the same length of time but his symptoms are progressing more slowly, which he attributes to the drug. Symptoms for ALS patients progress at different rates, though. 

My neurologist did not recommend Radicava for me because it has been proven only to help patients in the early stages and it only slowed things a little even for them. I decided against it because it is administered by infusions and it costs $150,000 a year. 

I’ve already lost much quality of life and I didn’t want to lose more with the infusions. Also, Felicity may need that money and if she doesn’t I’d rather it helped fund our grandkids’ education. 

Perhaps Medicare would pay but that doesn’t feel right when at the very best it would only delay my death a little bit. The huge cost of that would fall on everyone who contributes to Medicare. 

There’s a lot more to think through. We must both make our treatment wishes more detailed. What would I want done or not done if I’m seriously enfeebled but my heart could be kept beating longer by some intervention?  We’ll try to be specific about that ahead of time.

At what point should I move to a hospice and which one, or could I get hospice care at home? Much better to die at home because hospice staff are not required to attempt violent resuscitation. Ambulance and hospital staff have no choice unless I make an advance directive and it’s readily accessible when needed. 

I hope these thoughts don’t make you sad. I’ve said before how unhealthy it is to avoid talking about painful topics. How can we know how to act most lovingly if we don’t share our ideas and feelings about how best to respond to what is inevitable?

To my family Feb 2 – I keep rediscovering that it’s impossible for an ALS patient to know for sure how they’re doing. I’m as weak physically as I was at the start of the month and I might be weaker but I have more mental energy so I’m less constrained by my physical weakness 

Especially this week, the second week of Doma’s visit here, I’ve been able to spend long hours at my computer helping her find a job and establishing a tracking  system so David, Ilana and our friend Dean can keep track of all the contacts we make in this project and don’t miss any follow up actions.  I couldn’t do much except read novels the first half of the month. 

Is the difference that I caught the bug that made Felicity so tired and now I’ve recovered?  Or am I feeling better because I’m doing something productive. Was I depressed before and didn’t recognize it?  All the above?  No way to know, but I did catch the bug. 

What’s very good about ALS is it forces you to recognize that your life will soon end — it always could have ended at any moment — and it gives you enough time to prepare. 

Felicity and I are also blessed to have an extremely thoughtful and kind hospital nurse for terminally ill children as a daughter-in-law. Julie strongly recommended Caitlin Doughty’s “Smoke Gets in Your Eyes” to her Facebook friends.  We got a copy and learned much that we didn’t know. 

We now know it’s possible to have a Green Burial. My body doesn’t have to be embalmed and buried in an impenetrable box. It can be a source of nourishment for other beings. I like that.  Felicity found a Green Burial cemetery nearby and we’re going there for a seminar in April. 

We also discovered it isn’t necessary for a funeral home to be involved at all. You could say your farewells to me in our home, not some anonymous place where odd music plays and strangers simulate mournfulness.  

Julie also helped us see there are more scenarios to consider than just the ones covered by a “do not resuscitate” advance directive. Thank you again so much, Julie.

Most ALS patients die because their breathing fails. Unless I establish a “do not intubate” directive, emergency workers would insert a tube down my throat and force air into my lungs mechanically. I could be kept alive that way for a very long time.  I wouldn’t want that for either of us to endure and there are other possible situations Felicity and I must plan for. We’re lucky to have enough time for that as well as for more fun things. 

If I am buried from home I may have to give up on something I promised. My Tibetan Buddhist teacher once mentioned that it’s hard these days to get human skull caps that are used as bowls in some ritual ceremonies or thigh bones that are used as trumpets. The next year I asked if he would like mine. He said he would and I felt honored.  

Felicity has always worried about the logistics of getting that done but she is of course supportive. What might have been possible to arrange at a funeral home may not be possible if I am buried from home. 

My teacher offered to send a lama to perform the traditional practices just before and after I die. I’d have to be at home for that, anyway, but it’s unlikely we will know when I’m close enough to death to call for the lama. I have more research to do to know what’s practical. Maybe none of it.

Speaking of practical, we tried a wheelchair this week while visiting the Hershey Chocolate factory. I found it a lot easier than walking and I had no negative feelings about being in a chariot.  I also don’t miss my long hair and showering is much easier.

While I’m on this subject that perhaps we don’t want to talk about but which will leave us happier if we do, several friends said this talk about the struggle of watching a loved one die was helpful when I posted it on Facebook:

The talk feels 100% authentic and it’s so well delivered.  A couple of key things the speaker learned are, there are no dying people — we’re changing, growing and dying in every moment we’re alive — there only living folks and dead ones, and however much we might try, we cannot orchestrate another’s death.  So I’ve been watching a lot of opera recently to beef up my own orchestration skills 🙂

My ALS Adventure – December 2018

We got home from our long road trip around the middle of the month and planned to visit our three sons for Christmas. I was quite a lot weaker than when they’d last seen me and I didn’t want them to be surprised so I sent them the following note.

Hi Guys, I included health related events in some of my road trip emails but it’s a while since I gave an overall picture.  It sounded gloomy when I started writing this so I stopped because that gave the wrong impression. I felt a bit low that day but I almost always feel happy to be alive, enjoying the things I can still do. I just rehung prayer flags that blew down a couple of nights ago then walked round the yard, for example, but I’ll start with what I wrote then because I’d be pretending if I gave the impression that I never feel at all low.

I wrote:  My equanimity is incomplete today. I’ve been tired since we got home from our road trip, exhausted the first couple of days then with a little more energy each day but with no improvement the past couple of days. I’m tired of being tired. 

I’m not aware of telling myself stories about my possible future. I completely accept, as far as I can tell, that my strength will keep declining. I think it’s just that my limits really are a nuisance and I can’t get used to what I can still do because the limits on that keep increasing. It continues to be an adventure, a thought provoking opportunity for learning, but right now it’s as if I’m in an area where it’s colder than I’m used to and it’s raining. 

I’ve walked round the yard a couple of times since we got back. I had to keep stopping to catch my breath the first time and I was wearing my neck brace to see how that would feel. It was uncomfortable. I didn’t wear it the second time and I felt stronger so it was more enjoyable. 

I expect I’m disappointed that I stopped getting stronger and our trip is over and that’s compounded by frustration over my nostrils being so plugged the last two nights that I couldn’t use the BIPAP. Not using it may, of course, be why I’ve been so tired yesterday and today. Felicity did a lot of vacuuming and air filter cleaning and I’m breathing better today. 

Another factor could be having our first really frustrating experience because I can’t speak. It was the first problem we’ve been unable to fix. I realized how difficult everyday life must be for those who are more disabled than I am. 

So, here’s what’s going on as best as I can tell.  My diaphragm, neck, leg and other muscles all continued to weaken in the months we were on the road.  I was driving, which requires little muscle strength, and I was getting very little other exercise so I didn’t notice any change until it recently became an effort to hold my head upright.  Now I’m home I’m walking a bit more, climbing the stairs and whatnot, so I am noticing that my body is weaker.

I hadn’t had the energy to climb to my practice room until yesterday afternoon.  I sat meditating for half an hour, and although it felt similar to reflecting in other places it was more productive in the place Buddhist teachers refer to as a container.  I’ll reestablish my practice up there for as along as I can climb the stairs.

We need strength to control our body. We also need it to control our mind, our consciousness  There’s nothing I can do beyond what I’m already doing to avert my loss of physical strength but I can keep on gaining more control of my mind.  The new challenges I will keep encountering as my body keeps losing functionality will give me new opportunities for learning so long as I view them in that way.

To summarize, I’m happy to be alive today and I almost always am but I don’t want to pretend I’m entirely happy in every instant.  How could I be when I don’t yet have full control of my mind?  It doesn’t play scary videos about my future but I do still hear gloomy background music sometimes when I get very tired.  I’m less tired today because Felicity persuaded me to take a half measure of Nyquil last night in case my nostrils blocked again. They did and I had to take off the BIPAP but I got a lot of good sleep, anyway. Thank you so much, Felicity for that and for all the other things you do!  I’m blessed to be with you.

January 3rd – Being with family for the holidays were very happy times.

It was also tiring. Our last visit was on New Year’s Day and by the time we got home I felt I’d reached a plateau of permanent tiredness.

It wasn’t true, just a story I made up. The next morning I decided to restart pushing myself, not hard but every day. I would resume my daily Buddhist practice and build it back to at least an hour. I would walk round the yard every day, and/or do something productive. This afternoon I tried to jump start my car that died while we were away and determined the problem is something other than or in addition to a dead battery. I also drove the mower around to charge its battery.

I sent my health update to Doma, too. She now goes for teachings by my first Buddhist teacher. Here’s part of her reply to what I wrote; “You spend most of your life in equanimity but disruption of that state is a very natural human experience. The realization of that means you are conscious and with consciousness comes work. Today, Anam Thubten said practicing Buddhism and meditating would be so boring if you do not find a piece in you that needs work.”  He’s so wise and so funny 🙂

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.

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.