My ALS Adventure – April 2019

It’s evident in hindsight that the bug I mentioned in January was clostridium difficile. I’ve had it at least that long. It’s unrelated to ALS but it compounds my weakness. I’m only now close to getting rid of it.

April 17 to my family –

Yesterday, the 4th, I stumbled when I got up suddenly from my chair and started quickly to the left aiming for the bathroom. My balance felt a bit uncertain all day. It’s okay today but my gut is still upset. I’ve switched back to rice blended in water to give it a rest  If it’s not better after the weekend we’ll see my doctor. 

It’s likely the balance problem was triggered by my greater weakness from this bug but the root of it is ALS. Before I lose the strength to walk I’ll lose the ability to depend on my balance. I accept that but I felt a bit low all day. 

I think that’s because I’d been regaining my new normal state of health before I relapsed. I’ve been healthy almost all my life and when I did get sick I quickly recovered so that’s what I’m used to. We don’t respond well to surprises when we’re tired.  Our emotional habits kick in. 

Today, the 6th, my gut still doesn’t feel right so I’m sticking with the rice plus a tablespoon of yogurt and some Gatorade power. I feel fine emotionally but tired. 

Today the 7th I took a vegan nutritional shake with the rice. I wanted some nutrition. My gut feels closer to normal and I haven’t felt so tired but I still have very low energy. I enjoyed brief walks outside on the deck a couple of times. 

Same diet today, the 8th, and my gut is working normally at last. My balance is a little unsteady which is likely at least in part because I haven’t been getting enough nutrition. I hadn’t checked my weight for a while. It’s down 10 pounds to 130 because I’m losing muscle mass throughout my body. I was staying at 140 because my belly was growing. It’s reduced a bit now. 

I’m being cautious about going back to the formula. I’ll stay with the rice and nutritional shake at least today. If gut troubles return when I go back on the formula I want to be certain that’s the cause. I feel more steady today and I have a little more energy. 

Late afternoon we go to a presentation by the owner of a cemetery in Harrisburg who provides Green Burials. The cemetery is well over a century old and attractive. The green burials, ones where the bodies are buried with nothing that will not biodegrade nutritiously, is in a wooded 12 acre area with a fine view. 

Most of the trees are being cleared and the area is being planted with flowering shrubs and perennials. The bereaved families are invited to come on a day in Spring to plant their deceased one’s site according to the overall plan for the area. 

The entire set of services is very thoughtful and they will be maintained well. The relatively young owner who started her career at IBM wanted her own business but never imagined it would be this. She was asked to buy the cemetery and came to the decision slowly. She enjoys nature and gardening. 

I always thought I wouldn’t want a permanent site for my body and that’s not what I want now. But my family will enjoy being here and it will be attractive for everyone. We purchased sites for both of us. Mine will be planted with mountain laurel, the closest I can get to the rhododendrons I loved even in England. I planted one in the garden of our house in London. 

Today, the 10th, I’m staying with the rice mixture. My gut is still upset so we’ll go to the doctor tomorrow. 

My thorough and caring doctor says intestinal problems are not associated with ALS as far as she knows. She thinks I most likely have bad bacteria in my gut. She prescribes meds, wants stool samples, orders a checkup with a gastroenterologist  and says I should go back on the formula. 

This morning, the 12th, I start taking the meds. Then my doctor’s assistant calls. I have clostridium difficile and I need different medicine. Felicity is impressed by the diagnosis. When she was working as a microbiologist this anaerobic bacterium could not be grown in the lab. There must be a new method now. I’m just relieved to have a diagnosis and, therefore, a treatment. 

It’s now the 17th.  The meds seem to be working but I also have to take probiotics  to replace the good bacteria. The bad effects of the bad ones seem to be gone but the new good ones are creating their own turmoil and I feel exhausted. 

Now for the amazing news. The ALS Society suggested Felicity contact hospice. We thought it was available only to patients with less than six months to live and the average ALS patient lives for three to five years so I might have another couple. Turns out they serve all the terminally ill, which means I qualify. My doctor just had to say I am terminally ill. 

A delightfully helpful hospice social worker came a couple of days ago and an equally helpful and empathetic hospice nurse came yesterday. She will visit us weekly. The immediate benefit is I now have a hospital bed at no charge!  Everything they provide, and they offer a lot, is no charge. 

The other immediate benefit, which is extremely important, is Felicity has people she can talk with who will answer practical questions and who can also provide expert emotional support. Longer term, Felicity can get practical help. 

We commented to the social worker how unfair it is that this amazing level of care is available to us at no charge (it’s paid for by Medicare) but not to others. She said the painful ones for her are veterans who have suffered for years with no help and who she only gets to help when they are very close to death. 

Every one of us is terminally ill with an unknowable time left. It would benefit us all, and be affordable, to make our society more kind. 

April 30 to my family

The antibiotic almost got rid of my clostridium difficile but right at the end I relapsed. Now I’m on a new one that I take every six hours whose side effects are an upset stomach, gas and tiredness — the same as the c. diff. symptoms, hahaha.  

Taking these meds four times a day, eating three times, taking other meds with some meals but not others, grinding them or removing their plastic case so they will go via the PEG tube…  I’m eager for c. diff to be gone.

Holding the syringe in the tube this morning for the formula to drain into my stomach I realized it will be a major challenge to my equanimity when my hands give out.  Felicity will feed me and I’ll be okay with that but how will it be when I can’t hold a book or write or type?

It will be hard for both of us which makes us even more blessed that a hospice nurse now visits every week. We can ask questions of someone with experience of ALS, not have to figure everything out by ourselves, or guess. I asked if it’s common for patients to feel more tired in the mornings. It is, even with the help of a BiPap. 

Because my condition is always changing, the details and timing of our future are uncertain. The future always is uncertain but in most circumstances we can imagine things will stay the same.  If we think about the future we can imagine them getting better.  But I might be significantly weaker any tomorrow. The only certainty is that my overall health will not get better. It will be increasingly important for Felicity to have expert help.

Just before I started the new meds I was able to mow a path round the back part of the yard and beside the pond. It’s like riding a power wheelchair. The problem has been finding a good way to support my head now my neck muscles are so weak. The head is very heavy!  Felicity came up with a modification yesterday that helps a lot. 

We’re both enjoying Spring. It’s a blessing to be alive. 

My ALS Adventure – March 2019

To my family – March 15

We decided that although I’m handling stairs okay now it’s better to get a stair lift before I need one. We’d begun the research a couple of weeks ago when I was tired and had to take the stairs slowly. 

About the tiredness — it seems to be correlated with an upset stomach. I eat the same thing every day but sometimes my gut has trouble digesting it.  Maybe batches of formula are different somehow. 

There are many manufacturers of stair lifts and even studying reviews and top ten lists doesn’t make the choice obvious so we had three vendors come to the house. The first seemed fine. The second cost twice as much and wasn’t obviously better. Its salesman spent much of his time bad mouthing the first manufacturer.  That led us back to the reviews and we realized the key thing is service. If the lift stops working and I can’t use the stairs without it, I don’t want to wait a week or more for a service guy to come. 

Felicity called an installer in Gettysburg who was by far the most  convincing of the three. He reluctantly confirmed that the first vendor is not good. His product costs in the middle of the others. So we’re getting that one installed on Monday. (Update: it works fine.)

I had the first of two physical therapy sessions  The therapist was cranky because the prescription just said I should be given therapy. Felicity explained my condition, its history and that I need a program I can do at home to keep my joints flexible.  He was fine now he knew what to do and when Felicity mentioned that I used to trek in Nepal his eyes lit up. He told us about his triathlon in Canada, how much he wants to go at least to Everest Base Camp and his enthusiasm for all Jon Krakauer’s books.

Meanwhile I’ve been gathering funds to support the education of half a dozen girls in Ladakh. It was the next place I wanted to explore, a Tibetan area that is relatively unchanged because it’s part of India not China.  I’ve been Facebook friends with Gary Sayers, the head of Our Ladakhi Sisters (OLS), for a couple of years.  It’s a registered charity that gives funds to schools to support individual students. 

A student who graduated from High School and needs extra studies before vet school can’t be supported by OLS because Indian law only allows it to donate to schools. This student must be supported directly.  Friends have offered enough to support other girls, too, so, like every project I ever did, it’s more complex than I expected and very satisfying.

My other big project is adding photos to my trek logs and posting them to my website. My camera on the early treks was film and I didn’t label the photos with where they were taken so it’s a good and happy exercise for my memory. 

Back to my physical health — my breath has grown worse and worse. I’ve started brushing inside my mouth with Listerine but my family doctor said I should go to the dentist. I was hoping to avoid that now I no longer put food or drink in my mouth 🙁 I wonder if I’ll be able to get my mouth open far enough. My jaw muscles have tightened up.

We decided to sell the RV because I won’t be strong enough for another trip.  It went back to the lot where we bought it yesterday.  I do feel a little regret about that but far stronger is my delight that we did the trip.  Henry was a good friend.

To my Tibetan doctor – March 15

I had more energy most days last month than in January.  I think the additional weakness in January was not just that I was recovering from the road trip and re-acclimating to being home.  Felicity had a bug early in the month that made her very tired.  I suspect I got it, too, and it took my weakened system a long time to overcome it.

Episodes of extra weakness last month seem to have been correlated with mild stomach upsets.  They certainly were once I noticed the possibility.  They may be triggered by differences between batches of my food formula.   I switched to a different box of them the last time I had digestive trouble and quickly recovered.

The last couple of days I have been very tired and I suspect that’s because I started sleeping on a different bed.  My breath had grown so bad that It was hard for Felicity to sleep with me.  I’ve started sponging inside my mouth with Listerine with some positive results and will get my teeth cleaned at the dentist.

I need to sleep for 10 to 12 hours and all my large muscles are weaker.  I can still walk and climb stairs but I get short of breath quickly and I have to pay attention to keep balanced.  The ALS clinic prescribed physical therapy to give me a program I can do at home to help avoid stiffness.  They are easy and it feels good to be doing something but they may also contribute to my extra tiredness.

The ALS clinic measured my lung capacity at 15% but that’s because my lips can’t make the tight seal the instrument requires.  My neurologist confirmed, by observing me, that my lung capacity must be higher than 15%. My oxygen saturation is usually in the high 80% to mid-90% range.

I’m able to use the BiPap at night again because Felicity got me springy clips that I stick on my nose to keep the nostrils open.

We’re getting a stair lift installed so it will be here when I need it.  I’m ok with all that but we’re also selling the RV because I won’t be strong enough for another trip and I do regret that a little bit.

So…  I recognize what you said about our lack of knowledge about neuroplasticity but I’ve come to the conclusion that I don’t want to get up early to take the precious pills and put their extra strain on my 75 year old body.

I’m happy almost always, I’ve accomplished most of what I hoped to do and there are things I can still work on that feel worthwhile.  My kids are all doing very well.  Getting Doma a job is the only big thing left and other people are working on that, too.  I joined the ALS Institute’s Precision Medical Program so my data will add to the big database they’re building and I feel I should continue to take Riluzole for continuity.  I got another botox shot to reduce dribbling.


From my Tibetan doctor

Regarding the precious pills, I will leave it up to you. We can certainly modify the regimen to a time that is convenient for you. The early mornings were simply to maximize its optimal time, but I have patients taking precious pills at various times of day depending on their capacity and condition. One of my lung cancer patients was taking precious pills daily through his last days, and his aerospace engineer wife was tracking his oxygen saturation rate — it increased 10% on precious pill days compared to non-pill days. He was also quite coherent till the end (which is rare for lung cancer patients, and he was not a practitioner). So I think it would be ideal if you could continue taking them as your energy, schedule and capacity allows. However, I will certainly respect any decision you make. If you are ready to move on from medicine, and simply maintain the Riluzole for the consistency with the ALS Institute’s Precision Medical Program, then I am happy to support you in doing so.

To my Tibetan Buddhist teacher’s assistant – March 21

I’m happy and odds are that although it continues to weaken, my body will keep functioning for another year or so, which means we probably have enough time to plan.

After discussions with my wife and kids we’ve agreed that if possible I will die at home with whatever help is necessary from a hospice organization.  I will in any case have a green burial so my body will be a source of nourishment.

What I realized from our discussions is that I hadn’t sufficiently considered my family’s feelings.  They are supportive of my Buddhist practice but they know almost nothing about what is involved.  They know it has positive results for me but to the extent they know anything about the rituals, they seem weird.

I realized it would be very distressing for my wife especially if I give my skullcap and thighbones to Rinpoche as I intended.  Just the thought of it is upsetting enough and it’s certainly not something I can put her through if I die in my home and my body goes straight from here to the cemetery.  It was already problematic, anyway, because I haven’t found anyone who knows what to do.

What took me longer to accept is that I would also be selfish to accept Rinpoche’s very kind offer to send a lama here to perform the ritual practices as I am dying and after.  My wife would feel that caring for me at that time had been taken away from her by someone with whom she had no previous relationship and who was distracting her from her own way of saying farewell.

I discussed all this with Doma who would have helped the lama in any way possible.  We wonder if there is anything that can be done remotely instead.  Is there something she could do, with or without a lama, if she/they are not here with me?  Perhaps there are practices for those who die in very remote places up in the mountains?

Please discuss this with Rinpoche.  It is most likely not urgent for me, as I said, but it is important, and my dilemma will be faced by other Westerners with families, too, so it’s worth figuring out.

End of month status

For the last couple of weeks my body has been struggling with a viral infection. Felicity had the same symptoms, severe tiredness, runny nose and mild stomach problems starting a bit before mine and before a lovely long weekend where our three sons and four grandchildren came to celebrate the anniversary of when my body separated from my mother’s. I say it that way because my birthday on Facebook is when my body separated from England.

At first I wondered if my mild extra tiredness was ALS-related. Then I wondered if it was my extra activity at the weekend. Then I went to bed for a nap early in the afternoon late last week and did not wake until 10 the next morning. Felicity was afraid I was not going to wake at all. I’ve been slowly regaining energy since then. I stopped eating the formula because my gut was quite disturbed. Yesterday and this morning I had a little white rice blended thoroughly in water with some Gatorade powder.

I felt very tired at first yesterday but by midday i felt pretty good and this morning I feel quite a bit better. I’m on the way back to whatever is my current underlying bodily health.

There were times when I felt like an old dog who it would be a kindness to put down but even then I did not feel regret. Thanks to the example and practical guidance of my amazing spiritual teachers I’ve learned how to be happy to be alive almost no matter what, and because I have this precious human life I can keep practicing. I’m also spectacularly blessed by Felicity, my children, and so many friends and other loved ones.

My ALS Adventure – February 2019

I’m no stronger than last month but I haven’t been feeling so tired. Perhaps my body was fighting off the bug longer than I realized. Feeling more active means I have been a bit more active and that’s strengthening. This really is an adventure, haha.

Feb 6 – To My Family

I’d been chatting to someone for a while the other night before I remembered I hadn’t been able to do that for many, many months. I felt so silly for having forgotten how to talk. But I enjoyed chatting and I didn’t feel disappointed when I woke up 🙂

On Monday we went to John’s Hopkins for a six month checkup at the ALS Clinic. They are expert and caring people but we don’t learn much unless we ask questions so we’d prepared a bunch of them. 

My feeding tube is in good condition and that’s fortunate because my lung capacity is now only 15% (I don’t know what that’s a percentage of and I think it’s really higher than 15%) so I could no longer tolerate the general anesthetic that would be necessary to replace it

My leg and arm strength was deemed good and I was prescribed a couple of sessions with a physical therapist to give me a program to do at home to slow further decline.  I will not be trying to regain strength because that’s not possible and I must stop when I feel tired, not keep pushing as I always used to do. 

I must stretch all my muscles daily so they don’t stiffen. I only realized today that because I no longer move my jaw to eat or speak, those muscles have seized up. I can barely open my mouth most of the time and when I yawn I have to protect my lips when my jaw snaps shut. I’ll start a stretching program to loosen it. That’s necessary because my breath is bad. I thought it was OK to stop cleaning my teeth since I no longer put anything in my mouth. I was wrong. I need to swab it out several times a day. 

I’ve been pleased that I haven’t had coughing spells recently so I stopped using the Bullfrog machine. The reason I’m not coughing could, however, be that I’ve lost the coughing reflex  I must use the machine twice daily to clear mucus from my throat so it doesn’t get into my lungs. 

It will be good when I get another botox shot later this month because that reduces drooling without the side effects I’m getting from doubling my dose of meds recently. What I didn’t know is those meds dry up not just my saliva glands but also my eyes, and they impede urination. I’d noticed both symptoms but I hadn’t thought about their cause. My eyes are so dry now that when I was asked to close my eyes to test my balance, I couldn’t make them close. I hadn’t noticed that before. 

We asked about wheelchairs and were recommended to try a rollator. It’s a walker with four wheels and a seat. I could push it round the yard and sit down whenever I wanted or needed to. I can walk with a hiking pole now but probably not for a whole lot longer. Choosing a powered wheelchair is mostly personal preference. I’ll want one I can use to go round the yard. 

I’ve always been prone to my nose getting blocked and that’s worse now I don’t have the lung capacity to blow my nose. I sleep on my right side with my head on my hand to hold that nostril open. There are special cushions to make lying in bed more comfortable. (After we were home Felicity got me sticky spring strips that pull your nostrils open. They work like a champ. She had suggested them before but I was foolishly skeptical.)

We got the application form for a handicap sign for the car and advanced directives so emergency health workers will not attempt heroic measures on my body. One of those is now on the fridge door, the other in my wallet. 

It probably seems odd that I hadn’t noticed or hadn’t thought about some of these symptoms. I think it’s because there are changes going on throughout my body all the time. Keeping track of, researching and thinking about them all would take a lot of time I’d prefer to use in other ways.

On Tuesday I went for an eye exam. I had dropped my dribbling meds back to the original dosage but my right eye especially was still very dry. All the news is good. My eyes are unchanged from a couple of years ago. The doctor suggested I just get reading glasses because my existing ones are okay for everything else. They do now they’ve been adjusted, that is. 

So we chose a frame and reading will be easier a week or so from now. The problem I was having is now obvious. Why didn’t I think of it before? Because my neck muscles are weak, my head drops toward my chest which means I’m trying to read through the wrong part of the lens.  (Felicity found an aid for my weak neck, too, a foam brace that holds my head up and also allows some sideways movement for when I drive.)

I’ve noticed this before; things that are a mystery to me are obvious to an expert 🙂

Feb 24 – To My Family

When our situation changes enough it can be hard to see how our mind is responding. When asked if I get depressed because I’ve lost so much  strength I say I don’t think so. I accept my worsening situation with equanimity and I still find humor in things readily enough, but could I be more active?

That doesn’t seem very practical when just to walk I must go very slowly so I don’t run out of breath. But much as I enjoy reading and opera performances, they alone are unsatisfying. I realized I do need to spend some time accomplishing something.  So I’ve started adding photos to my trek logs and posting them to my website. It’s familiar work that requires considerable effort, but the effort is chiefly mental. So far, my fingers haven’t been affected and my eyesight should remain okay. 

One thing i don’t have strength for now is chainsawing so when Mark came, I gave him mine and its accessories along with my insulated coveralls and snow boots.  i’m not aware of feeling regretful that I can’t cut wood any more but the question keeps popping up in my mind, “are you sure you won’t need those things again”.  There’s no feeling of worry, it’s just a background process reviewing my actions and trying to help

One of the ongoing challenges is balancing my desire to do what I can still do with Felicity’s desire to help. There was no need to think about it before ALS but now I need help just to take a shower.  How, though, to recognize when it has become smarter to ask for help? And how can Felicity recognize the next task that would be better done with her help?  We don’t want to burden each other with unnecessary requests or offers. 

I commented the other day that I was very tired and my energy fluctuates quite a bit from day to day for no reason that I can see. The reply: “That’s true for us all”.  It was only a couple of days later when I had much more energy that I realized I’ve become like my first car. It had an 850 cc side valve engine and it was old. I’d have to change down to 3rd on slight inclines and 2nd on steeper ones. It had very little power so it was extremely sensitive to even small changes in load. 

The rollator came today. It’s a walker on four wheels with a seat so I can go for walks and sit down whenever I need a rest. We got the one with the biggest wheels so I can walk round the yard.  The wheels are quite small even so, 8″ in front and 6″ in back, so it’s hard to push over even slightly uneven ground. Felicity thought of dragging it on two wheels and that works quite well. It will be easy on paced surfaces. But this reinforces that it won’t be easy to choose a powered wheelchair I can use outside.

Today, Feb 17, is my most productive in a long time. I copy edited my first Himalayan trek log and posted it with an introduction and a way of commenting, went for a short walk, did an hour in my practice room, updated my tasks in Doma’s job search spreadsheet, lit the wood stove and used the remaining time to read. 

Low energy the next two days.  I reread Marjorie Allingham mysteries after a gap of forty years. They’re as good as ever, cleverly constructed tales of interesting people in a culture that was still shaping behavior when I was a child. 

Yesterday (Feb 22) we went to John’s Hopkins so I could get a botox shot to reduce my dribbling, and see my neurologist.  It was a different botox doctor this time. The shot I had six months ago was effective for about three months but we couldn’t recall how effective. Since I had no adverse results and that dose was very low, he gave me a higher dose. 

It’s always a delight being with my neurologist. He’s Indian and worked in the UK before moving here He was distant the first time we met but since the second time he has enjoyed and reciprocated my Namascar greeting with hands in the prayer gesture. He’s intrigued by my trekking in Nepal and my Tibetan Buddhism, he enjoys Felicity’s thoughtful questions and he likes our happy acceptance of what he so regrets is untreatable. 

When he tested my muscle strength and found my right arm and leg weaker than my left he said: “you’re right handed”.  Having observed me rising to greet him then sitting comfortably while he questioned us, he said: “the clinic measured your lung capacity as 15%. It can’t be as low as that”, which is what we thought from the outset. 

So, I’m weaker than when we saw him six months ago but we knew that. There’s no way to predict the future rate of decline so we didn’t ask. The good news is the dryness in my eyes results from the anti-drooling meds so that should clear up now I have the botox and have stopped the meds. 

There was a tremendous rate of flow the day after I stopped the saliva meds. That was yesterday. This morning the flow is less. The botox is starting to kick in 🙂

Feb 28 – To My Family

Condolences from a dear friend about my declining strength brought something into clear focus this morning.  I knew it before and I was pretty much living that way but it wasn’t crystal clear in my mind. 

To be happy we must differentiate between our circumstances and how we respond to them. 

The acceptance Buddhist and other teachers speak of means clear eyed acceptance that our circumstances are as they are in this moment. 

We cannot be happy and act in the best way if we are preoccupied with wishing our circumstances were different. 

If we recognize our circumstances wholly accurately, however, we can act to change them if that’s possible and if it isn’t, we can act in harmony with them.

Almost all my life I could talk and enjoy food and tasty drinks. I can never do either again but I can still communicate and get enough nourishment via my feeding tube. I can even get some fragrance by adding spices to my soy-casein formula. 

Almost all my life I’ve been strong enough to do what I wanted to do. I’ve lost most of that strength now and I’m losing the rest but there are still things I can do and there will continue to be until the end. 

What’s important is I can adapt. It would so sad to waste any of my life regretting what I can’t do instead of doing what I can, which might just be watching a dozen deer in the field opposite as I did yesterday evening.

All this is very obvious but I’ve been surprised by suddenly recognizing obvious truths before so I thought I’d mention this, anyway.  I hope the way I’ve explained it makes sense.

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 🙂

Road Trip – Chapter 18

We visit Selma’s Voting Rights Museum on the Montgomery side of the bridge where in 1965, only five years before I began life in America, the police brutalized voting rights marchers. Coming upon the Klansman as I entered one of the rooms was startling but that was the only drama here. The museum’s thoughtful displays got me thinking more holistically about things I’d previously been distressed by only in isolation.

Our history is that of a white patriarchy built on genocide and slavery. There has been important legislative progress but the beliefs and behavior of our society’s first two centuries are still all too present. We must work skillfully for many more years to eradicate them entirely.  

The Constitution, established in 1789, gave the responsibility for defining who could and could not vote to the States. Most of them enfranchised only the white male property owners who formed about 6% of the population. 

Between 1792 and 1838 free black males lost the vote in several northern states. On the other hand, the abolition of property requirements gave more white males the vote between 1792 and 1856. 

In 1868, following the Civil War, citizenship was granted to everyone born or naturalized here, which is the basis for future expansions of voting rights, and in 1870 non-white men including freed male slaves were granted the vote. 

African Americans were, however, systematically disenfranchised by southern States and those actions were generally supported by the Supreme Court. Furthermore, while slaves were freed with, as Dr, King pointed out, no bootstraps by which to pull themselves out of poverty, white immigrants from Europe were given farmland for homesteads.

It was not just African Americans. In 1882 Chinese immigrants, many of whom were brought here to build the railroads, were denied citizenship. That was not repealed until 1943 by which time Japanese Americans had been incarcerated for a year. They were not released until 1946. 

Native Americans were granted citizenship and therefore the technical right to vote in 1887 but only if they dissociated from their tribe. That requirement was not lifted until 1924. I’ve written before about the systematic extermination of Native Americans. 

It was not until 1920 that women got the vote and they faced the same great practical obstacles to doing so as poor and non-white men. 

It was only in 1965 that the Voting Rights Act gave every citizen the right to vote regardless of race, economic status, education, sex or any other characteristic. 

But although “all men are created equal” is no longer just a nice phrase and its implications have been spelled out in the law, our behavior still must change. Here are some thought provoking recent remarks by Reverend Barber on white supremacy.

Our next stop is the Old Depot Museum where there’s an extraordinary range of exhibits including a dentist’s chair like the one where I developed my terror of dentistry. There’s also a replica of a seven inch rifled cannon. I had no idea there were such huge ones. 

A set of 1872 rules for teachers lists their janitorial duties first. Then comes that male teachers may take one evening a week for courting purposes or two if they attend church regularly. Women teachers who marry or engage in unseemly conduct will be dismissed. After ten hours in the classroom teachers are free to spend the rest of their day reading the Bible.

As I enter a room in back of the second floor there’s a huge bible on a lectern and I remember the day I graduated from Richard Hale’s Free Grammar School for the Deserving Sons of Impecunious Gentlefolk Founded in 1608. I turn the pages to Ecclesiastes Chapter 12.

All 600 of us were marched to the church on that day every year for our final lessons, one of which, Ecclesiastes, was read by a senior boy. who, that year, was me. “Vanity of vanities, saith the preacher, all is vanity” seemed an odd final message. Presumably, the point was in verse 12, “of making many books there is no end; and much study is a weariness of the flesh“.

The highly animated lady who runs the museum says it’s impossible for anyone not to find something interesting here. 

She tells us about her pet raccoon that she found behind the museum when it was tiny. She often brings it with her and it never chews the exhibits. It has great dignity and will not be chastised. It used to sleep at her feet. Now it curls up against her head, wraps itself in her hair and purrs. 

We camp beside a lake at Prairie Creek State Park on the way to Montgomery. Felicity lights a campfire. We watch three great egrets perch silently on the opposite bank where they will spend the night. 

Next day – A big flock of ducks flies in. They begin diving for fish and are soon joined by one of the egrets which dives, grabs a fish in its long beak without landing in the water and flies up to look for another one. Now cormorants come barreling along inches above the water. 

I’m so lucky to have a good sense of humor. My fingers were cold at breakfast time when I was cutting open my capsules to put the powder down my tube but they worked well enough. I thought: “well, I may be dying but at least I’m not getting old”.

We drive to Montgomery and visit the First White House of the Confederacy where Jefferson Davis lived for a couple of months in early 1861 after being elected President of the Provisional Confederate Congress. The Confederate government moved to Richmond, Virginia that May. 

We watch a fascinating DVD that gives what I’ve been hoping for, the origins of the Civil War from the southern point of view. 

The historians on the DVD tell us eleven states seceded individually from the Union in 1860 and 1861 in protest against tariffs raised by the Federal government from 15% to 32% which not only hurt the southern states but favored the north. They then formed a Confederacy to protect themselves against potential northern aggression.

I do some research over the next couple of days. Tax was indeed a factor but the tariffs reflect a deep economic conflict at the root of which was slavery. The Northerners, notably the Quakers, objected to slavery on moral grounds but the greater issue was political power.

Secession seemed possible because Southerners read the Declaration of Independence statement “it is the Right of the People to alter or abolish it, and to institute new Government” to mean they could reject the Federal government and form a new one for themselves. 

The rights of the states embodied in the Articles of Federation had been superseded by the Constitution. Many, particularly in the South, believed the original arrangement was better.

There was talk of “disunion” all the way up to when the Civil War began. There was a Nullification Crisis in 1832-33 when South Carolina declared Federal tariffs imposed in 1828 and 1832 were unconstitutional and unenforceable. That Crisis was ended by tweaking the tariffs but the underlying issue was not resolved. 

A national tariff policy had been established after the war of 1812 to promote manufacturing. Tariffs were imposed on imports of manufactured goods to shield domestic producers from European competition.  

Raw materials including cotton were not taxed, however. That meant the South faced overseas competition both for their exports and for purchases by Northern cotton mill owners. They also had to pay more for imported manufactured goods. 

Because iron, coal and water power were mainly in the north and cotton entirely in the south, Southern politicians saw the tariffs as favoritism. 

Tension between north and south increased in the late 1830s because many in the north thought the movements to annex Texas and make war on Mexico were fomented by slave owners wanting to dominate westward expansion.

Government in the South had in fact always been greatly influenced by wealthy slave owners and, as I’ll explain in a minute, Southern politicians whose wealth and power depended on slavery had disproportionate power in Congress.

That is the context in which the Civil War was about slavery. The Constitution did not prohibit slavery. The northern states had made it illegal while the southern states had not.

By the middle of the 19th century New England, the Northeast and the Midwest had a fast growing economy based on family farms, industry, mining, commerce and transportation, the area was rapidly urbanizing and it was attracting many European immigrants.  Seven out of eight immigrants went to the north. 

The South was dominated by plantations worked by slaves, it was chiefly rural and there was little manufacturing. Slave owners controlled politics and the economy. 

The 1803 Louisiana Purchase had gained the US control of New Orleans, gateway to the nation’s river transportation system.  It also made a vast new territory to the west available for expansion (where white immigrants were given land). It would be up to the States formed there to decide who did and did not get the vote.

Northern politicians and their sponsors were determined not to let the slave owners control that new territory. Plantation owners wanted it because cotton mono-culture exhausts the land so they wanted to keep moving west.

The Southern politicians and their sponsors were meanwhile concerned about the much faster population growth in the north, because that determined representation in the Electoral College. Political power was shifting to the north.

Southerners had been concerned about growing Northern power since 1820 when Missouri was almost denied admission as a slave state. Northerners on the other hand resented the extra seats gotten by the south because slaves were counted as 3/5 of a person. 

Slaves were counted as a fraction of a person for tax purposes. They were viewed not as people but as property. The southern states didn’t want them counted as people in addition to taxable property although they did benefit from the additional representation they represented in the Electoral College.  

In 1812, for example, the slave states had 76 out of 143 representatives but they would have had only 59 without the slaves. After the Civil War slaves were counted as whole persons, which further increased the South’s advantage, but they were systematically disenfranchised. 

Southerners objected to the homestead laws that granted free farms in the west because small farmers would likely oppose plantation slavery.  

Jefferson Davis believed the north and the south were so fundamentally different that they must be governed separately. He had no wish to attack the north. Lincoln, however, believed the nation must remain united and because that was paramount, whatever it took to restore unity must be done. The Confederacy must be stamped out. 

So much detail to sort out (there is of course far more than I’ve cited above) and so many opinions. Understanding it is like my consulting projects years ago. It’s fun, but typing and copy editing are so much less easy on a phone. 

Next day – This is different from my usual trip notes and more than long enough so I’ll be brief about today,

We drive to Cumming, Georgia to visit my cousin who I never met before and his family. We have a lovely time and accept their invitation to stay for a day or two.

We decide to head straight for home from here.  We could do it in one long day by car but we’ll take it easy and give ourselves a couple or three days to complete the trip. We get Henry winterized because it’s well below freezing at night now. We’ll spend the night in hotels from here on.

So we did. Now it’s mid-December and our 100+ day, 10,000+ mile journey round part of the world is at an end. Here’s an appropriate anthem: We’re at the end of the line and “it’s alright riding around in the breeze, even though I’m old and gray I still have something to say — I’m happy to be alive.”

Road Trip – Chapter 17

My boss wants me to brief everyone. The hall is packed and it’s past time I started but I can’t find my transparencies — it’s still the era of overhead projectors. I root through my mountain of paper and find them at last in an envelope. The first one is a page of some document with a typeface too small to read. None  of the foils has anything to do with my project. I’m no longer sure what it aims to deliver, anyway, much less its status, so I wake up.

I’ve had variants of that dream before. I don’t know what sets it playing. The emotional state that goes with it stayed with me in attenuated form all morning.  It’s hard to wake fully from some nightmares. 

No surprise. It’s almost impossible to free ourselves from waking nightmares, too, the stories that play in our mind about who we are and how things are, the stories that shape how we respond to life’s events.

We head off on Route 10, round the Gulf side of Lake Pontchartrain, bypassing New Orleans because I can’t eat or drink now so it’s best just to remember our visit years ago, and then we’re in Mississippi where we turn onto coastal Route 90. 

The sand is so white. All along the coast are plantation style mansions. One is where Jefferson Davis, President of the Confederacy, lived. It was almost destroyed by a hurricane but it has been restored. It’s late afternoon so we keep going and camp at Shepard State Park, past Biloxi and almost to Pascagoula.

Next day – It rained last night, our first rain since Washington state. I slept deeply and long, soothed by rain on Henry’s roof and with clear nostrils because Felicity found and cleaned the BIPAP air filter. Thank you!

We head northeast toward Selma, Alabama, mostly on back roads. The first part of Alabama is wet, with some marginal farming amid scrubby woodland. We pass a church sign telling us: “Fear of the Lord is the beginning of wisdom”

When the ground is a bit higher and dryer there are a few more houses and they are not trailer homes. A church here says: “Come as you are. You can change inside”

As we go on, the land is almost entirely forest, almost none of it managed. POTUS would say it’s badly in need of raking but the trees are so close together it would be almost impossible for even a coyote to get between them. A couple of areas have been logged but not replanted. A church here has a message from the Lord: “I’m coming soon and I’m making a list”.

Past Mobile there is more and more scraggly forest with some sections where pine trees are planted in lines.  After quite a while, though, we pass a gigantic cellulose products plant so there must be a lot more managed forests away from the road where we can’t see them. 

Felicity goes into a Post Office and convenience store at a crossroads to see if they sell camp firewood. The lady at the counter is primly dressed and seems suspicious. She says they don’t. I ask Felicity to go back to see if they have baby aspirin. She is answered by a different primly dressed woman who simply says: “no”.

This feels very different from where we were in Louisiana. 

We drive on and arrive at Roland Cooper State Park on the Alabama River shortly before dark. Selma is only 28 miles away. 

Next day – I waken to the blast of gunfire. Seems odd that hunting would be allowed in these parts on Sunday. I sleep again. 

The result of a shower is very pleasant but showering itself was exhausting. I need all the breath I can get and I breathe less under the spray of water. A few minutes of slightly reduced air flow is utterly debilitating. I have to sit down for a few minutes on the short walk back to the camper. 

It’s great when I’ve recovered, though. They say in Maine that any day above ground is a good day. True enough but we can acknowledge that some days’ circumstances make that easier to recognize. Today is glorious, a deep blue cloudless sky and strong sun on the yellow, gold and dark green leaves. 

We drive into Selma and find everything closed, even the Visitor Center. By everything I mean all the shops on Main Street, too. A few very elegantly dressed black folks are still chatting after church.

We saw some cotton fields yesterday. We’re now in the land identified in the 1820s and 1830s as good for short-staple cotton which had become possible to process profitably after the cotton gin was patented in 1794. 

Like sugar cane plantations established in Louisiana a generation earlier and cotton and tobacco grown east of here starting when the British colonists first arrived, these cotton fields, too, were worked by enslaved Africans. 

Slavery was legal in all thirteen colonies in 1776. Congress prohibited importation of slaves after 1808 but smuggling continued and the domestic slave trade flourished, driven by plantation owners. There were four million slaves in the South before liberation and a third of all Southern families owned slaves.

In Selma tomorrow we will learn more. 

When the campground at a nearby State Park turns out to be closed for the winter Felicity finds us a private one. It’s quite small. I hope there is wifi because cellular bandwidth has been limited or non-existent in most of Alabama so far. “No, we’re country folk. We don’t have nothing like that” the lady says. “If ya turn up the antenna on ya roof y’ll get all kind a stuff” her husband assures us. 

Road Trip – Chapter 16

The Palmetto Island State Park is terrific both in size and beauty. It’s a diverse forest with, next to our campsite, what looks like the most enormous rhododendron tree I’ve ever seen (it’s a magnolia). At the base are palmettos. 

We drive to Abbeville because the Park Ranger recommends a restaurant there. We check out a cultural center dedicated to the Acadians (Cajuns), French speaking catholics who came here after being kicked out of Nova Scotia by the British. 

There are many flyers for tourist attractions. One that strikes my eye is about a wilderness tour on a small boat. Felicity eagerly books us for tomorrow afternoon. 

The wilderness is a couple of hours from here but there’s a creole restaurant ten minutes away that was even more highly recommended and which sells frozen food, too, so I persuade Felicity to check it out. That’s not hard to do 🙂

The store is a colorful old timey place with a very friendly owner. Felicity makes several tantalizing purchases including turtle gumbo. 
We drive back through Abbeville. Many of the fields on the far side are wet. They’ve all been harvested so we can’t tell what they were growing. Then we pass one with Ricetek placards on the fence. Ah, rice. 

Further on, the fields are thickly covered with a green plant that grows as high as corn but has no seed heads. It must be sugar cane. Felicity asks Google and learns that a great amount of it is grown around here. 

I’ve been looking for several days for an oil change place because we’ve gone almost 4,000 miles since the one when the speedometer was installed. Now I see one and they can do it right away. 

When we settle the bill the owner chats with us”

“How long have you been in this area?” 
“A couple of days in Louisiana so far; we like it a lot, never been here before.”
“How long will you stay?”
“Probably only a couple more days because we need to get home.”
“Where did you eat last night?”
“Martin can’t swallow so we eat in the camper but I did have lunch out today.”
“Have you tried boudin?”
“What’s that?”
“Well, if I tell you maybe you won’t try it.”
“Is it sausage?”
“It is, they make it from what’s left after a pig is butchered.”

I look enthusiastic and the owner looks very happy about that. He smiles broadly and tells me the best boudin comes from Richard’s Meat Market. It’s in the opposite direction, where we came from in fact, but only ten minutes away. We go, of course, and Felicity indulges me.

It’s just dark when we reach the campsite. Felicity immediately purees one of the sausages for me.  I won’t regret this no matter what my stomach makes of it. 

This place doesn’t seem to have a name. It’s not far from White Castle, which is the name of my very first meal in the USA. I loved it! I love boudin, too. 

Next day – No ill effects from the boudin and the excellent taste is still with me. I’ll have an early lunch today because our wilderness tour starts at 2:30 and I’ll need all my plumbing to be stable.

My all-liquid diet differs from the usual in several ways. One is I never have “I’m hungry” sensations. I wake up knowing but not feeling it’s time to eat. No problem because I can follow routines whose purpose makes sense. Another difference is I have to be careful not to trigger acid reflux by bending. Liquid contents of the stomach can come up my throat much more easily than our usual viscous mix. It’s all just circumstances to manage as much as anything can be managed.

This campsite is utterly different from the State Park one, a concrete slab with sites side by side facing a road. Our host is very friendly and helpful, though. All our interactions in Louisiana have been. We’ve been feeling very positive about our time here, not quite knowing why. We’re sensitive to geography and usually shun flat lands. Maybe the beautiful live oaks account for the difference. 

But I think the big factor is, the people we’ve met all seemed happy. I wonder why. It can’t just be the boudin. 

We drive down to the general store where we’ll meet our tour guide. We’re very early because we worried we might get lost but it’s a five minute straight shot. Felicity chats with the woman behind the counter. She’s from Vietnam. This is a pretty isolated community but I guess anywhere in America would be strange. 

Then we chat with three guys hanging out in front of the store. Two are fishermen, happy that this is the start of crawfish season. The other is a plumber. 

Felicity has many questions about sugar cane harvesting, crawfish and other local topics. They’re happy to explain. They’re happy period. The younger fisherman says it’s a good living, this is the most productive place in America for crawfish. You can get 10 lbs a day in a trap and you can pull 200 traps a day, so a metric tonne. Farmers also catch crawfish in traps on the irrigated rice fields. The season lasts about five months and it’s just starting now so prices are high. He gets $3.50/lb now. That will drop to $1.50. 

Our friendly and knowledgeable tour guide studied wetland environments at LSU. Felicity tells him we hope to see an alligator. It’s probably too cold for adults but there might be a younger one. 

We see great blue herons, great egrets, bald eagles and anhinga. Then he spots an alligator, two to three feet long, floating almost submerged, motionless. It’s farm raised, he says. You can tell because it has a notch cut in its tail. They’re raised from eggs that wouldn’t have hatched in the wild. 
There are also squirrels, raccoons, deer, bears, armadillos and nutria. The nutria were imported for their fur, a cheaper alternative to mink.

Armadillos can’t swim but they can hold their breath for many minutes. They cross rivers by walking across the bottom. All these creatures have to deal somehow with the flooding and drying of their habitat. 

There are big concrete platforms left from when an oil and gas business went bust and several abandoned gas pipeline junction platforms. There’s also an area of dead trees, poisoned by waste dumped by an oil driller. Much of this area is privately owned but there are stronger environmental protections now. 

This is part of the Atchafalya Swamp, a huge area that’s part of what used to be a far larger one before the Mississippi was channeled by levies. The water here all comes from that great river and it rises and falls ten feet or more seasonally. The current is fast in the main channels and the water is very muddy. 

A century or so ago this whole area was logged. The loggers came in when the water was low, cut the roots around the trees and left them to die so the sap would dry. They came back a year or two later to fell them when they were dry enough to float. 

Before the logging this was a climax forest with a 150 foot high canopy. Most of the trees are bald cypress. They’re adapted to life with roots under water. How they get oxygen is an as yet unsolved mystery. A popular theory was recently disproved. 

The main channels are wide and around seven feet deep right now. We barrel along at high speed, stopping to watch birds and make side trips into bayous where the water is still. It’s a terrific experience. Our guide enjoys it as much as we do. 

I tell him everyone we’ve met in Louisiana has been friendly and seemed happy. I ask if we’ve just been lucky. He says there are nice people everywhere. Felicity asks follow-up questions and he says he doesn’t know if there’s anything unusual about folks here but it is thinly populated so maybe it’s easier to feel good.

Thinking about it later I suspect the people we’ve met have all been living pretty much the same way all their life. They know what to expect from day to day and year to year. Much less stress than urban life now. 

Next day – I wake fighting for breath. My nostrils are blocked. I rip off the BIPAP and slowly recover. Next time I wake, my nostrils are partly clear but I want more air in my lungs so I put the BIPAP on again. I wake fighting for breath again. Next time I wake it’s from a nightmare in which we’d bought a huge house in far worse condition than our current home was and a crew of casual workers were not actually doing any work. When I castigated one they all quit and that’s when I noticed they’d stolen a collection of gold coins.

“Powerful stuff, that boudin” says Felicity but I reckon the heating system filter needs changing. “The one in your BiPap, too” says Felicity. The nightmare comes from T. C. Boyles’ excellent novel about Frank Lloyd Wright’s women and the fires that destroyed his home. 

Today we’ll visit plantations. The first is Oak Alley Plantation where a man from a wealthy French family established a sugar cane operation. His wife’s family had fled from Haiti when the slaves revolted against French rule in 1791. Other members of his family included a governor of Louisiana as well as many other politicians and bankers. 

Plantation owners were active in politics because it was important to maintain favorable conditions, including prices, for their crop. “Twas ever thus” as Mr Natural pointed out.

A docent gives us a good overview of the life of domestic and field slaves. Very hard. A second one tells us some family history in the main house and seems relieved when he completes his spiel with very few questions.

Next we visit Laura Plantation, an entirely different evperience. Our guide here is very enthusiastic and enormously knowledgeable. He grew up just a few miles from here and went to college in New Orleans. He loves the smell of the smoke when they burn the cane trimmings after the harvest. If they’d make a candle with that scent, he says, he’d buy their entire inventory.

The plantations all front the Mississippi so they could ship their sugar to New Orleans and the owners could party there. They are long narrow strips that extend far back. Timber was harvested beyond the cane. On some plantations the harvested cane was hauled to the sugar mill by mules over rail tracks.

Harvesting went from the beginning of September to the end of the year and was pretty much a 24/7 operation. The plants harvested first would regrow to a couple of feet high or more by the first frost. An early frost would be a financial disaster. 

This plantation made especially enormous profits in the three years following the Civil War. How? The slaves were freed. They could go anywhere they wanted for a better life. Why didn’t they leave?  

Slaves were not allowed to learn to read and write. They were barred from any education at all. And they had no money to make moving possible. Their wages were very low and were in the form of scrip to be used at the plantation store where they were caught in a cycle of debt. A few men went to fight for the North. When the war ended they had nowhere to go but back. Many of the slave houses here were occupied until the 1970s.

Our first guide at Oak Alley knew a lot because she’d read widely. Our guide here knows far more and there’s nothing academic about it for him. He’s a wiry young white guy whose forbears must have lived not so differently from the slaves. He’s not outraged, just deeply interested in how this society worked and, I’m sure, how it works today. He keeps his opinions about it to himself.

Road Trip – Chapter 15

We start toward Corpus Christi along Route 90 through vast plains of tumbleweed that has not yet tumbled.

It’s Thanksgiving tomorrow so Felicity has been working hard to book campsites. The ones in State Parks are best for people like us who enjoy nature but it’s not easy to book them. She found a good site for tomorrow that is full today and eventually a private one near it with a space today. The one we were aiming for in Corpus Christi is closed for repairs following a hurricane. She’ll find an alternative when we’re closer. 

The future tumbleweed is soon replaced by brush, some of it 10-12 feet high. There are a very few grass-covered fields. Most of the fencing looks sturdy so I assume there are more cattle than we can see. It’s only occasionally that one or two can be glimpsed among bushes next to the road. 

Entrances to the ranches are far apart, so they really are big. I wonder about their economics. How much income can you generate from a few cows scrounging scraps of brown grass from between densely packed bushes? These don’t look like commercial businesses. 

A couple of hours from Seminole there are a few large irrigated fields. Why here?  Why not in other parts of this huge plain?  Three hours out we start to see oil pumpjacks. 

It’s been overcast all day and I had to use the wipers a few times to clear tiny droplets from the windshield. We didn’t really get moving until after lunch because the supermarket stop was long but it’s only a four hour drive so we’re at tonight’s campsite before dark. 

Next day – Felicity cooks egg, bacon and portobello mushrooms. I could feel sorry for myself because I can’t partake but how silly that would be. Instead, I can enjoy her pleasure and relish the aroma. What a blessing to be alive. And now the sun has come out!

The morning is taken up by breakfast and a shower. It feels good. Then we move to the Choke Canyon State Park campsite where I read more of the Indigenous People’s History, a detailed account of genocide carried out by Federal and State governments and settlers alike. How did they justify it? They said the Indians are savages. But why is it okay to kill savages?  

It was legitimized by the Doctrine of Discovery giving European nations title to any land they “discovered”. That started with a 1455 papal bull authorizing the Portuguese monarchy to seize West Africa. Two years after Columbus “discovered” America, the Spanish monarchy sponsored a 1494 papal bull that divided all non-Christian lands between Portugal and Spain. Other European monarchs relied on the Doctrine of Discovery to build their colonial empires and in 1792 Secretary of State Jefferson claimed it also for the infant USA. 

Those beliefs that our predecessors brought from Europe live on in our sense of entitlement today. That’s why we imagine it’s OK for us to be conducting what we call counter-terror activities in 76 countries, close to 40% of all the world’s nations, directly contributing to the deaths of 500,000 people since 2001.

Our karma is far from unique. It’s just that we have more money than anyone else right now and, therefore, our leaders have more scope for greed, indifference and hatred. I’ll continue to do all I can to motivate the opposite behavior. 

We go for a walk round the campsite. My legs feel quite weak today. Balance is not a problem, I’d just feel better sitting down. After a rest I read more of Ralph Peter’s “Flames of Heaven”. His protagonists are vividly human, more so than most of us but completely convincing. He’s not a very likable man but he sure can write. 

Felicity has a fine feast of cheeses, guacamole that she says is the best she has ever made, tamales and black refried beans. We share some Prosecco. 

Next day – I slept well. My nostrils didn’t get plugged for the first time in several days. The air is not so dry here by the lake. Also, we didn’t need the central heating so it wasn’t blowing dust around.  

We start south and soon pass the Brush Country Cowboy Church. In fact, the brush has almost all been eradicated. We’re driving through grassland. 

There must be quite a bit of oil from the pumpjacks around here. There are some large oil processing plants.  A little further on we’re in a region of very large plowed crop fields. No need for irrigation here. The air is even starting to feel humid. 

Now we’re in the midst of used car lots and  huge stores. It’s Black Friday so the roads are filled with people eager to shop. Back in the small towns with BBQ, taco and suchlike restaurants and bait/ammo/beer stores, towns where every guy must have a bigass pickup truck, I felt like a foreigner. Here I’m utterly out of place, an alien. 

Now we’re over the bridge and onto Padre Island. A little further on we’re away from civilization in the National Park. The almost flat dunes shimmer, long grass blowing in the wind. The campsite next to the beach is already almost full just after midday but we find a good spot, open the windows and let the breeze have its way with us. 

If I can still walk next summer I’d like to visit Utah and Northern New Mexico. 

Next Day – I slept well and long. The humidity is very helpful. My nose feels clear.  We’ll have a day of rest today. Felicity will paint and I will read. We’ll both enjoy the sun, the clean air and the masses of yellow flowers. 

A man starts walking down the road, a dog begins to follow. A woman calls, the dog stops, the man turns and speaks, the woman calls again, and the dog turns toward her. It scratches itself then trots back to her. We aren’t surprised when dogs understand us. 

We also aren’t surprised that we can walk. The woman’s walk is more fluid than the man’s but how amazing it is that either of them can walk at all. We only fail to be astonished because we keep seeing it happening. 

Being unable to speak is inconvenient and I can no longer enjoy the variety and tastiness of foods but I do notice and reflect more now. That’s the purpose of silent spiritual retreats. This is different from a retreat in that everyone else is doing what people normally do but the experience Is  fundamentally similar for me. I’m not so distracted by my own participation in what goes on. 

David commented: You say: “Being unable to speak is inconvenient … but I do notice and reflect more now”. It seems to me that “notice” and “reflect” are quite different, and “participation in what goes on” can be a form of noticing; it doesn’t require contributing verbally or otherwise. Reflecting seems after the fact/experience. Do you find that not being distracted by planning what to say gives you space to more closely/intensely feel/experience/perceive what’s around you and happening in the moment? Do you have more to reflect on later?

I replied:  Yes, I do notice more. As you say, I’m not so preoccupied with thinking about how to interact with others so I have more opportunity for awareness. I’ve mentioned the Zen abbot who inspired me. On a Zen retreat you get a brief one-on-one opportunity to ask the teacher a question. When I sat before him his eyes were very wide open. He seemed hyper alert, his entire focus on what I would say and how I would say it, none of his ego present. His attention was entirely on me. And his answer was utterly convincing. I also have the opportunity to begin reflecting right away on what I noticed, either “outside” or “inside” my head. I was going to say I’m less aware while I’m reflecting but that’s not accurate. I’m more relaxed about reflecting because I have more time to do it and that means I can turn away from it immediately I detect some interesting new input. 

Next day – We bypass Corpus Christi and head east along Route 35 beside the Gulf. The land here is densely covered with live oaks. Then comes swamp land that goes on and on and on until it’s followed by cropland that does the same. There’s a lot of standing water.

It feels as though a few more years of global warming to make the polar ice caps keep melting will result in this whole area becoming seabed. The ocean won’t have to rise far. Increasingly savage storms will do the rest. 

As we get further inland we pass through a mix of cropland and cattle pasture. Both look healthier than the land closer to the Gulf but there’s still quite a lot of standing water. It’s very flat. “Why would anyone choose to live here?” Felicity asks. 

We stop at a supermarket for drinking water, beer, Ensure and other stuff. I brought plenty of formula but we’ve been on the road a long time and now there’s only 17 days worth left so I need to supplement it. 

The drive round the outskirts of Houston is much the same as driving round any city. So many car lots. It doesn’t feel surprising that there are all these restaurants, everyone has to eat, or all the stores, but who buys all these cars? 

We stop at a campsite at Anahuac on the Galveston Bay. There’s a sign warning campers not to let their dogs go swimming because there are alligators but it doesn’t say anything about children. I hope we can see an alligator in the morning. 

Next day – No alligator with intact sensory apparatus will come out this morning. The wind is still powerfully cold. Last night it lifted the hatches and made them howl as the camper shook from side to side. 

There are so many pelicans here along with egrets, white and blue herons, and cormorants. 

The land through which we pass on Routes 65 and 73 is almost all cattle pasture. Every so often we pass a gas processing plant. As we approach Port Arthur there are huge steaming refineries. Then we turn onto Route 82 to continue along the coast into Louisiana. 

The only structure for quite a while is a medical waste facility miles from anywhere and suspiciously close to a river. The land here is a mixture of cattle pastures and swamp, all very flat. Presumably it’s wetter than usual; the cattle on some pastures are squelching through standing water. 

In some places the road is right on the oceanside. In the distance out to sea are oil rigs. Most of the time the road is just a little inland. Now we begin to see houses. Most are on stilts and those that aren’t are on artificial islands. Here’s a church on stilts. Now there’s a school on them. Quite a few of the houses are trailer homes. 

We pass through a small town. The only building beside the road that isn’t on stilts is the library, which is quite small. 

There are many herons, both gray and white. Suddenly, Felicity exclaims! She’s seen a pink flamingo. I stop and back up. It doesn’t look pink to me but I’m red green colorblind. She consults her bird book. It can’t be a pink flamingo after all because they don’t come here. It’s a roseate spoonbill. 

We drive on to the ferry at Cameron. Very cool. Felicity takes pictures of shrimp boats.

Quite a way further on an almost black wild pig on the opposite verge begins to run. I stop as quickly as I can from 50 mph but even so I outrun him. He scampers across the road behind us and disappears in the rushes. 

It’s dark by the time we camp at Palmetto Island State Park, Louisiana after another great day.

Road Trip – Chapter 14

We head south on Route 90 then Route 67 to Presidio on the Mexican border. The land opens out more and more and becomes grass land. This is not grass as we who live where it rains think of grass, though. It’s brown and grows maybe a foot high in wispy patches. 

There are a few cattle so it’s possible For them to live here but no cow would choose to do so. I take that back. Cows in a concentration camp would relish this freedom. 

Presidio was a bustling small town when Felicity was here a decade or so ago. There was a lot of toing and froing with the small town on the other side of the river. It seemed more like one town then than two.

We’re here in part because Felicity wanted to go back to the restaurant where she enjoyed tacos and the company last time. It’s different now. 

She sits at a table behind two Mexican women who get up and go for salad. An Anglo man comes in and sits at their table with his back to Felicity. “Excuse me. Excuse me” she says but he seems not to hear. The women come back. He seems not to notice. They pick up their glasses and move to a different table as he stares at his cellphone. The waitress moves the rest of their stuff to the women’s new table. He orders waffles. 

We drive southeast alongside the Rio Grande through a jumble of mountains heavily eroded by humongous floods. Gravel plains are covered with creosote bushes all the way to Terlingua Ghost Town where a bar on a boardwalk faces a dirt parking lot full of assorted vehicles. On the boardwalk are chairs, a man with a guitar and a bunch of folks ready for a good time. It’s Saturday night. 

Just down the road is BJ’s ramshackle Campground. It seems to be the permanent abode of most others here. 

Beside the road into Terlingua are some magnificent Texas Longhorns.

Next day – We drive into Big Bend Park, a huge, beautiful array of many kinds of mountains. Different colors, different shapes rising from some flat and mostly undulating gravel plains with washes at the low points. There’s not much vegetation apart from creosote bushes. It would be fine hiking country. 

The two campsites near the Visitor Center are full. Signs say the others are, too, but the Ranger says that was last night. There could be space now. We drive 35 miles to Castolon and find a good spot under cottonwood trees. 

We have lunch then sit in the sun.  I want to know who did what to whom in the novel I’m reading but it doesn’t grip me. 

I have a coughing fit. Haven’t had one for a few days. I read more then have a fit starting with an explosion of saliva that lands on the book. I feel annoyed but don’t tell myself a story about it. Feelings are a spontaneous response to stimuli. Emotions come later and are stories about feelings we’ve had before. 

Maybe I’m reacting to the dust out here. I go inside, lie down and do nothing for a while. I have unusually low energy today. 

Felicity goes for a walk round the campsite. An Englishman with a VW camper has installed a flat plate on the roof as a platform for his tent. He has a ladder to get up there and tells Felicity no bear has ever climbed it. English men do some very odd things. 

Next day – Felicity goes for a walk to the Rio Grande while I allow my formula to settle. 

We drive to the Santa Elena Canyon, a spectacular cleft in the mountain through which the Rio Grande flows. The canyon walls are vertical. It doesn’t look as if erosion could have been the cause but I don’t know what geological event would have this result either. 

Then to Chisos Basin, a stiff climb through trees, the only forest we’ve seen anywhere around here, then an equally steep descent into the bowl. Bears and mountain lions live here but we don’t see any. The views are spectacular. Neither of us has enough energy to go for a hike. 

So we exit Big Bend and drive 70 miles north to Marathon where we camp for the night.  We decide we’ll start for Corpus Christi tomorrow. I seem to remember my dad stopped there when they left the farm. I reread the autobiography he wrote after my mom died.

They did stop there and it’s the scene of one of the seemingly infinite disappointments he remembered so vividly. He and his dad went fishing and got a good haul then moved to a different spot leaving their catch in a net at the harbor wall. An alligator garfish came and my dad could not get back to the net before the garfish ate them all. 

It’s interesting to reread the account now. He closes with his feelings about losing my mom. It is the ultimate disappointment. They finally got their little shop in the West Country of England then, within months, she died. He says nothing about mom’s hopes or fears, or any other of her feelings. Did he ever ask about them? It’s unlikely. 

Next day – We drive east on Route 90 through range land where a very few cattle are visible. The ranches must be very large. Suddenly, I remember how my dad used to enjoy singing:

Home, home on the range
Where the deer and the antelope play
Where never is heard
A discouraging word
And the skies are not cloudy all day.

He had a good voice. I tried to sing it several times but it always sounded bad. 

Windmills are dotted about, few of them working. A village we pass through advertises a hunters’ feast to be held early next month. 

The mountains are gone now. The land is flat all the way to the distant horizon in every direction. Gradually the scanty grass is replaced by low growing creosote shrubs. We pass a Border Patrol pickup dragging truck tires to smooth the dirt track alongside the highway. 

Felicity notices on the map that we’ll reach Seminole Canyon State Park around lunch time and there are pictoglyphs. We stop. There’s a 90 minute guided tour at 3. There’s also a campsite with one space left. It would be quite late before we get to the one we were aiming for if we don’t start until after 4:30 so we’ll stay here tonight. 

I haven’t listened to Zen and MM for quite a while. I do that while Felicity goes on the tour but it doesn’t grip me so I start reading “An Indigenous Peoples’ History of the United States”

I imagined the indigenous people of North America to be hunter gatherers in transient small communities. That’s what we’re meant to think. But the population of what is now the US and Mexico at the end of the 15th century was around 40 million while the entire population of Europe to the Ural Mountains was around 50 million. 

A city-state in the Mississippi Valley in the 12th century was home to tens of thousands. That’s more than London then.  Those communities had correspondingly sophisticated systems of government. 

The irrigation system at Casa Grande, for example, where we visited had over 800 miles of trunk canals, the largest of them 20 miles long. They were up to 85 feet across and 20 feet deep. Many were lined with clay to prevent leaking. One of those canal systems alone carried enough water to irrigate ten thousand acres. 

Native American society was far from primitive. But invaders with superior weapons established a new origin myth. 

Road Trip – Chapter 13

We head south toward the Tucson Desert Museum. It’s odd to see crop-bearing fields on one side of the highway and sand with a very few stubby mesquite shrubs on the other. Many fields are growing cotton. 

It’s a short side trip so we visit Casa Grande, a four story building made around 1,350 by native Americans  I wonder if anyone would have stayed here if they came from elsewhere? I do some research. 

Humans arrived here around 11,000 years ago when the climate was more temperate. Trees and plants began retreating north a couple of thousand years later and it was another 4,500 years before today’s plant and animal life was established.

So the folks who lived here had many thousands of years to adjust how they lived as the climate changed. They began living in communities around 300, established increasingly ambitious irrigation systems, and the population of the Casa Grande compound was around 2,000 by the time the great four story building was constructed.  

The compound was abandoned only a century later, most likely because massive flooding destroyed the irrigation system. Native Americans who live here now also have a legend that the community was destroyed by war. 

The purpose of the Casa Grande is not known but it has openings in the walls placed so the sun is visible through both holes at the equinoxes. Perhaps it was used by spirit leaders not just to keep track of time in that way but also to predict when the rains would come and when crops should be planted. 

Felicity guesses they got it wrong too many times and were killed, then fighting broke out among the desperately hungry people, survivors of whom returned to the way their remote ancestors had lived. 

From there we travel on to the Desert Museum and camp nearby. 

Next day – Felicity tells me I was grinding my teeth so hard last night that the noise woke her up. Now she’s more awake she realizes it was mesquite branches blowing against Henry’s walls. 

In my dream I was listening to Vera Lynn singing We’ll meet again, don’t know where, don’t know when but I know we’ll meet again some sunny day”.

I had a new appreciation for why British soldiers and those they left behind in WW2 loved that song. I did not feel sad. I was happy for everyone who found solace in her song. 

Is my mind hoping for rebirth? I know we have no intrinsic self that could be reborn and I’m happy that every action we take shapes the future of everything, but my mental roommate Mr Ego may not have accepted those truths yet. 

We walk around the desert museum for a couple of hours. I realize now, of course you’d stay if you were born here into the time tested way of life. Also, if you did go exploring you’d find the land all around was pretty much the same. 

The mountain lion is so elegant but its home is so small compared to what a lion is used to. The wolves look bored and the deer seems to have lost the will to live. The javelinas have a much larger territory, though, and they look happy. The desert plants don’t appear to need territory in the way mobile brings do. They come in such diverse forms. How amazing life is!

There are so many places we’re tempted to visit but we do want to be home before Christmas so after lunch we just barrel along the highway to Lordsberg New Mexico. We’re soon away from saguaro cacti and climbing through terrain covered by rounded light brown boulders balanced perilously on others. 

The land flattens, the mountain ranges are further from the road. The cacti are low growing, agave, cholla and others. Then mesquite and what look to be more and more creosote bushes. They smell so fine!

The road goes on and on. We pass a few tracts of pecans. Nothing humans en masse want can grow here without irrigation. How long before that collapses as it did at Casa Grande and what will we do then?  This is why we have science fiction. 

As we get close to today’s destination, road signs warn us about dust storms. If we get in one we must pull over and stop, turn off our lights, stay off the brake pedal, remain buckled, and wait. We’re on a very flat and very large stretch of sand with surprisingly large areas of standing water. The grass growing thinly around the water is brown. 

And now we’re at the KOA. This one is a bare parking lot, very different from last night’s where all the sites were nestled among desert plants and trees. The man who checks us in puts us next to another camper because he knows people like to be close to each other. 

Next day – There are so many places to see in New Mexico but most of them are too cold now and also, we want to be home before Christmas. We’ll head for the Gulf of Mexico and explore the coast. 

We turn off the highway onto a minor road that takes us to the Mexican border through the same sandy, mesquite sprinkled desert. We turn east close to the border and run parallel along it. 

Verizon claims we’re in Mexico and texts us we’ll be charged $5/day extra to use our cellphones now we’re no longer in the US. 

There’s hardly any traffic on this road, just Border Patrol pickups driving along the dirt track beside the road with dust clouds billowing high in the air behind them. Perhaps they don’t want to catch anyone trying to cross the border. 

We pass an encampment surrounded by a high fence. Many, many Border Patrol pickups parked outside the block house. 

Felicity fancies a taco for lunch so we stop in Columbus, a small village with several restaurants. We find one that looks promising. Felicity goes in, I have my formula in the rv and then go across the street to the library where they’re having a sale. I finished the very good Frank Lloyd Wright biography last night. Felicity returns from where it turned out they only sold hamburgers tricked out in many ways. 

Driving through El Paso is quite hairy then we barrel along the highway through the usual desert. Despite seeing it from the air many times I really had no sense of just how much of the US southwest is desert before we did this trip. Roadside signs far from anywhere offer 20 acres for $16,500, zero cash down, zero interest and $165/month. 

Not far short of our destination, Van Horn Texas, we stop at the Inspection Station. “Both of you US citizens?” I give a thumbs up. Felicity says “yes”. The man says “have a nice day” and we’re back on the road. 

Felicity reads that one of its founders said “Van Horn is so healthy we had to shoot a man to start a cemetery” and that he was shot a year later. 

I didn’t feel tired today and I had good energy.