My ALS Adventure – August 2017

This was the month when my teacher, Phakchok Rinpoche, introduced me to my wonderful Tibetan doctor and I began a course of treatment that has cured other ALS patients.

I do not yet understand much of the theory on which the treatment is based but I will keep studying and I will write about it when I understand enough.

From here on, I will include some of my emails to my Tibetan doctor.  They include references to information from her, but I will not include her emails because communications from any doctor are confidential.

August 14 – To my family from my Tibetan Buddhist teaching retreat with Phakchok Rinpoche

I should start by explaining that Rinpoche is extremely kind and observes his students closely.  That explains why things happened as they did.  I had told the retreat manager and Rinpoche’s secretary ahead of time that it would be an entirely silent retreat for me because I cannot talk, but there’d be no need to do anything special for me.  I told them I’m happy and consider what’s going on to be a wonderful learning opportunity.  I just didn’t want them to be shocked by the change.

Rinpoche invited me to join him and five others to lunch early on.  I later realized they’re all involved with Tibetan medicine.  One (Dr.T) is a highly trained Tibetan doctor, very smart and logical as well as kind.   Rinpoche told her to give me treatment.

Dr.T prepared four medicines for me to take at different times of day and, though I did not learn this until later, she initiated contact about me with her mentor, a Tibetan doctor who fled from Tibet with the Dalai Lama and who the Dalai Lama later sent to Mongolia to reestablish Tibetan medicine there.  He is now based in San Diego.

I took the four medicines for a week or so and she also prescribed a “precious pill” one day.  She and another woman who practices Tibetan medicine also applied heat treatment to the crown of my head, the base of my throat, my sternum and about four finger widths below that twice a day.

This treatment is for disturbed flow of the “rLung”, an internal wind about which I know nothing so far, and for malfunctions in the liver and kidneys, all of which Dr.T diagnosed from my pulse.

Then Dr.T’s mentor, who has many ALS and MS patients told her he used to treat ALS as a neurological problem but he later recognized that it’s more effective to treat the whole body.  He said to stop the four medicines and prescribed two new powders for me to take at the beginning and end of day in preparation for a course of precious pills that I will begin at 5 tomorrow morning.  I take one, go back to sleep, spend the day restfully and follow a pretty strict diet, rest and diet two more days, then take another precious pill and repeat the process.  After 5 pills and 15 days we will evaluate changes, if any, and proceed accordingly.

I’m skeptical about alternative medicine in general but open minded about Tibetan medicine because although the theories on which it’s based don’t make sense to me, the results have been studied very carefully over a very long time and I have great respect for results.

Also, Rinpoche is very smart and highly skeptical by nature.  I feel extraordinarily blessed to have met him and to have had the trust and discipline to practice sincerely, although not enough, in the ways he told me to.

Half way through the retreat I realized Rinpoche was treating me the same way as his most advanced students.  He invited ten of us out of the 80 or so to come for teachings at his house each afternoon.  Several  leaders of the community also commented that I am an inspiring practitioner.  I thought, oh how kind Rinpoche is to give me these teachings even though I am not a good student, he knows I may not have much more opportunity to receive teachings so he’s giving them to me now even though I won’t be able to understand much.

After a few days, when Rinpoche was describing a very advanced practice whose name had mystified me for several years, I realized I’ve been doing that practice for quite some time and my mind operates differently as a result.  Then I recognized that I had in fact understood everything Rinpoche told us.  I stopped feeling like a fake at that point.

So when one of Rinpoche’s most advanced students by far, who also teaches for him, presented me with 12 extraordinarily precious pills, one to be taken on each full moon and therefore enough to last until next year, and when the very advanced practitioner who lives permanently at the retreat center and teaches there gave me a fragment of Boudha stupa to place on my shrine, I felt authentically blessed.  They would not flatter me.  What they observe must, to my surprise, be real.

Many students know much more doctrine, and many know much more detail of ritual practice, but that kind of mastery was never my goal.  I simply want to be less selfish and more aware so I can be more kind.  Rinpoche is very open about his own difficulties with practice and how they have changed, the amount of practice he does is huge, and the results in him are so inspiring.

I am in no doubt that I will die and if I had to bet, it would be that ALS will make my body uninhabitable within a year or so.  Noticing and responding to the changes really is interesting, and I’m curious to see what does in fact happen.  I’m very lucky to have always been curious.

I’d prefer to live longer and remain active, chiefly I just realized, so I can produce more benefit by overcoming selfishness.  So I’m most open to the Tibetan medicine helping me as much as it has the man being interviewed here who was treated by Dr.T’s mentor, Dr. Lobsang Dhondup:

I also feel blessed by your presence.

August 15 – From a family member

It must have been a pretty wild moment when they gave you the fragment of the Boudha stoupa, and realizing that Rinpoche had included you because he believes you’re at a different level than you thought, and not solely out of concern for your health and well being.  It’s amazing to me how far you’ve come in the last few years through your practice.

August 18 – From a friend

I’ve read all of this with great interest and done a bit more research online.  I can’t begin to understand much of it but it certainly falls into a very wide category of “why not try anything that might work.”    Anything that may mitigate your symptoms and increase your feeling of well-being is helpful.  I’m impressed with the degree of progress that you have made with your practice that has been recognized by your teachers.  The fact that you didn’t realize this until now seems to be part of the essence of Buddhism where the ego isn’t getting in the way and one quietly goes along incrementally improving and deepening.   It also seems like good preparation for dealing with how the disease might progress whether or not you gain any sort  of remission.

August 19 – My reply

It would be so much better if we could talk about all this.  We must make an opportunity!

It’s said that there are 84,000 different Buddhist practices because there are at least that many different kinds of people.  What I’ve observed is it’s really quite difficult for us Westerners to see the fundamental ideas accurately or how the practices work.

Doma and my friends  she’s spending the summer with in California were telling me by Skype about a seminar they attended recently where there were five speakers.  Two were Tibetan, the other three were famous American Buddhist teachers.  My friends were struck by the humility and lack of ego of the Tibetans vs the very strong egos of the Americans, who made things both too complicated to understand and sound too easy to do.

Doma was especially struck by one of the Americans saying, first feel compassion for yourself then, only when you have mastered that, begin to extend your compassion to others.  She said: “That’s exactly the opposite of what I was taught!”

My own experience is, first we need the humility to do what a teacher who resonates with us tells us to do.  We Westerners are trained to doubt, and we want things to be easy.  We want quick results.  But it doesn’t work like that.  Retraining ourselves is a slow process that’s only effective if we do enough work.  There are the 84,000 different kinds of work, so we have to find one that suits, and then we must actually do it, not for ten minutes every so often, but much longer.  Rinpoche told me to do two one-hour sessions every day and ten hours when Felicity is away.

A teacher really is necessary,  We can make a lot of progress on our own by reading, reflecting and sitting, but at some point we really need the guidance of someone who has done the work and can articulate what to do and what results to notice.  That’s very hard because our culture doesn’t have words for some aspects of existence and many words we do have suggest something different from the nearest equivalent Tibetan words.  Because we have a different understanding of words like “compassion”, understanding the Buddhist view of existence is not easy for us even though the view is quite simple.

And there’s an even more fundamental problem that’s illustrated by what Doma noticed.  The purpose of Buddhist practice is to develop undiscriminating compassion.

If that is not our primary purpose, which for many Western Buddhists it isn’t, we get caught up in things that aren’t helpful.  How to reconcile Buddhist metaphysics with Western science?  How to understand Buddhist metaphysics in perfect academic detail?  How to perform specific Buddhist ritual practices with perfect fidelity to all the music, hand gestures and whatnot?  How to gain the personal benefits of Buddhism with the least possible effort?  And so on and so on.

August 24, 2017 – To my Tibetan doctor

It’s impossible to be clear about what’s going on from day to day.  The weakness in my mouth and throat progressed very slowly for 6 or 8 months, then quite rapidly in the last 4 months or so.  I lost 25 pounds weight without really noticing as eating grew more difficult and I ate less as a result.  I’m now back to what I weighed in my early 20s, which would be okay except less of it is muscle.  But I’m paying attention now, regaining a little weight and hoping to resume moderate exercise soon.

That’s a long way round to saying that I’ve been more tired on the non-pill days than I was before starting the treatment but I don’t know why and I’m not worrying.  It could be that the ALS is spreading to my limbs but it doesn’t feel that way.  I’ll let you know what develops.

August 29 – To a family member

The founders of all spiritual practices teach us to be kind to one another and Buddhism does, as you say, focus especially on kindness.  The teacher at my first weekend of teachings, which were about how to perform a particular set of Tibetan Buddhist ritual practices, told us at the end: “Your friends might ask what you’ve been doing this weekend and you might wonder how to explain.”  He laughed.  “It’s simple.  Tell them you’ve been training to be more happy and more kind”.

What I’ve been focusing on over the last year or so is simple acceptance of what happens and responding to that with equanimity.  Very easy to say but it takes a lot of patient self-training to do.

We don’t accept things as they happen — we have emotions about them.  Some things we like, some things we don’t, others we ignore.  And then we get disappointed when things we like don’t last.  And we get angry or sad when things happen that we don’t like.  It seems natural because we always have done that, but we’re just making ourselves suffer.  Suffering doesn’t just happen to us.  Circumstances happen and we create suffering in response.

August 31 – To my Tibetan Doctor

I recognized yesterday that I can’t keep track of the details of what goes on by memory alone so I started a diary.

I had more difficulty than usual swallowing at breakfast on the days of the 4th and 5th precious pills, for example, but I was tired from all the driving and furniture moving and etc on the two days before the 4th, and I inadvertently had extremely spicy food the night before the 5th.  I was swallowing with no more difficulty than usual later in the day on both the 4th and 5th.

Without being able to look back over the detail I can’t correlate potential causes with observable effects.  That’s a long way round to saying that I don’t think there’s any improvement yet, it’s possible the bulbar palsy is slowly progressing but it may be stable, and I’m pretty sure nothing else is affected yet.

I’ve been feeling somewhat lethargic, which is most unusual for me, and I wonder if it’s related to my being careful to rest on the pill days, then not doing much on the other days just because I didn’t on those days.  I got the sense that I’d feel better if I resumed getting more physical exercise.  So I spent two or three hours yesterday and today cutting firewood, doing it by hand and taking it easy.  Too early to know the effect but I enjoyed doing it.

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