Wednesday, October 28, 2015

Born Yesterday

Yesterday evening, on my walk out for coffee, I had the pleasure of meeting Siti, a fetching girl in pink, 6 months of age. She was being carried by her gramma and introduced to the various sights of the evening - two dogs in a hurry, walking side by side, a sudden flock of birds wheeling south in the fading sky, the funny looking bule with no hair. As I chatted with gramma, Siti gazed steadily at me while gumming an index finger.

Teething, gramma explained.

Lying in bed later on, staring at the ceiling instead of sleeping, which has become my habit of late, I started to think about teeth.

How strange it is that we start out with no teeth, then grow baby teeth, then a whole set of permanent teeth (so-called), which expel the baby teeth, and then, in old age, begin to loose the teeth altogether, to end up, at last, pensively gumming a finger.

In the morning, I awake at first light, swing my feet to the floor, glad to be done with trying to sleep. I glance at a stranger in the mirror. A man old enough to be my father. This face has been folded and creased, crumpled like paper, tossed in a corner like a tattered blanket.

How can it be? Was I myself not born just yesterday?

Tuesday, October 20, 2015

Out of Luck

Went to several pharmacies this morning, trying to scam them out of my medicine without a prescription. Finally found a girl who was willing to give it to me after some negotiations, but then she found that the medicine is not even available in Indonesia any longer 😁 So that will definitely mean a visit to the doctor to find a substitute, if I find that I can't get along without it.

Monday, October 19, 2015

Of Male Minority

(Originally written for Modern Day MS, but havent seen it yet, so will post here)

Relapsing-remitting multiple sclerosis, the most common type of MS,  is at least two to three times more common in women than in men. Researchers have long been puzzled by this reality. Various theories have been advanced to explain this discrepancy in numbers and various studies conducted, though inconclusively. It has been thought, for instance, that female hormones might play a role.

However, the most recent, and the most promising research points to an essential difference in brain chemistry between men and women. It has been discovered that a protein “gatekeeper” that controls what gets past the blood-brain barrier is more prominent in general in those diagnosed with MS, and that women produce far more of this protein than men.

Further research is presently underway in hopes of learning more about this protein and how it functions, which may lead to new and more effective ways to treat the disease. If the “gatekeeper” can be controlled, it may be possible to prevent immune cells from crossing the barrier.

In any case, this reality of being in the minority may sometimes be frustrating for men. Much of what is written on MS naturally comes from the woman’s perspective, and MS support groups tend to be heavy on the female side. Of course, many of the symptoms we experience in MS are the same no matter what sex is involved, providing us with an equality in experience. Some concerns, however, can fall outside the male frame of reference, and they are concerns that do often arise in support group conversions. Whether the woman with MS should have children, for instance, or what difficulties she might expect in pregnancy, or whether she should breast feed.

Needless to say, men suddenly fall out of  the discussion.

There is a male frame of reference that also differs from that of the woman. Men and women both face traditional expectations for behavior and in the realm of emotional response. Men feel that they are supposed to be in control, that they need to function at a high level at all times, especially where strength and assurance are involved. No on wants to feel that he has let a spouse down, but I think this feeling can be especially acute in men. We must be strong, reliable, stoic, able – and suddenly we are not.

I myself was married just one year before being diagnosed with MS. I went from being healthy, able, strong and energetic to being ill, incapable, weak and exhausted. I felt intensely that I had let my wife down. I was not what I had promised to be. I concluded, as many men probably do, that she might have been better off without me – with a real man, so to speak.

Well, this is the low point, and we do find, happily, that we regain our strength over time, in RRMS, anyway. But it is a dark time when one would really appreciate having another man to talk to. Our minority situation becomes distinctly pronounced.

As always, it is important to retain a sense of humor, to look at things from the bright side and to keep pressing forward. I observe, for instance, that I have rarely had the pleasure of being in the midst of so many members of the opposite sex. Most guys would give an eye tooth, right? How many female friends do I have online? Hundreds? That’s right. I’m a minority member of an exclusive group, and I reckon there’s some kind of luck involved in that.

Day Trippin'

I used to talk to my friend, Mike, who is no longer my friend, about this curious Indonesian practice of making plans to go somewhere in particular and kind of ending up everywhere in general. This usually involves a party that grows 2-3 times in number before you ever get started. You then set out for the planned destination by heading in the opposite direction. I remember Mike describing his wife's plan to visit "a relative's house", yet neglecting to mention that "a" in this case actually meant "all". In similar manner, my wife suggested that we go to Ubud for coffee yesterday. After packing a half dozen unmentioned folks into the car, we headed not for Ubud, not for coffee, but to breakfast at some obscure locale (who knows where it was?), where we also toured a villa/resort. Departing, then, for the aforementioned coffee in Ubud, we ended up at a Vespa Enthusiasts' convention. Following this stop, I believe we did pass somewhere in the region of Ubud, but ended up at another villa/resort (where we actually did, eventually, have coffee). It was time, then, to head home, so we headed to Gianyar, instead, to stop at the night market for nasi campur. We did get home around 9 pm or so. So these terms are relative, folks. There is really no such a thing as a trip to Ubud for coffee. I know this by now, and yet, every time, I forget. But, anyway, it was fun 


Found out this morning that the only clearly effective medicine I take for MS symptoms cannot be purchased with a prescription 😡 Would have to pay for a doctor visit every f'n month. Guess I'll just see if I can endure without it. Well, at least they gave me my kopi ala orang pelit at Starbucks today. One takes the good with the bad.

Monday, October 12, 2015

In This Together

Chronic illness is the great equalizer, the great leveler of humankind. It plays no favorites. It cares not for riches, nor does it prefer poverty. It cares not if you’re a person of faith, an agnostic or an atheist. And it certainly does not care if you’re a Republican or a Democrat!

This is Ann Romney’s – Mrs. Mitt Romney’s - story of life interrupted by multiple sclerosis – interrupted, compromised, rearranged and regained in a newness of awareness, empathy and spiritual vigor.

It is a story that anyone who has the disease will instantly identify with, drawing companionship and comfort from this strange bedfellow of physical illness. No matter who you are, what family you come from, how much money you have, or don’t have, the experience of MS is the same, the phases are the same, the emotions, the struggles, the adjustments and the solutions.  “You’ve basically moved into a new  body,” Ann quotes a friend as saying. “The things you took for granted before are no longer true anymore.”

One of the things I think we all discover, ironically enough, is an acute awareness of how perfectly God has fashioned the healthy human body. The one we had before. How unspeakably incredible it is that all things worked together so well! Having experienced an essential breakdown in that fine tuned system, we become aware also, strangely enough, of the sinister cleverness of disease, how it has frustrated the intended mechanism, and how it strives to persist.

But as Mrs. Romney herself points out, disease is neither a punishment nor a divine plan to bring about good. Some people will say that God has used the disease to improve you, or so that you can raise the awareness of others, or that your riches may be devoted to a common cure, or even that you have been cursed for wrong doing – we hear it all. Ann embraces no such theory. It is what it is, she says. It is random. It is part of life. We deal with it.

Ann Romney’s case of MS started out much like my own, with numbness in the leg, a loss of balance, and profound fatigue. As she notes, most of us have probably had the disease long before this in some mild form and thought it merely a strange feeling that passed, but then that event occurs that is too significant to ignore. You know that something is very definitely wrong. Like, Wow, I cannot feel my feet … now I can’t feel my legs … now it has climbed all the way to my crotch. OMG!

So you go to the doctor.

The first time I knew something was wrong was in 2005. I went to the doctor, had an MRI, but was misdiagnosed. Gradually the symptoms went away. Maybe it was nothing.

The second attack was in 2007. Again to the doctor, again the MRI – but this time it was read as clearly showing MS. And in fact the first was was reread and determined by the new radiologist to be “classic” for MS. It is a difficult disease to diagnose, as Ann also tells us in her book, but the tools are constantly and quickly improving as research progresses and awareness increases. And we can thank, in great part, people like Ann Romney for her devotion to increasing awareness.

There is no cure for MS, but there are strategies, medical, holistic and personal, for dealing with it. One of these is involvement in the MS community, sharing stories, sympathy, advice, and even humor. Yes, MS is funny in its own way, and as long as you can keep laughing, you can keep going.

Mrs. Romney also speaks at length about the various alternative methods that can be employed – those things that many of us scoff at to begin with – reflexology, acupuncture, diet, vitamins. Suddenly they seem rather reasonable, given that you’ve nothing to lose and there is no curative medicine anyway.  So, if it makes you feel better, do it!

Ann found her love of horses and horse riding particularly helpful. She immersed herself in the activity, even entering competition, eventually. She quips that husband Mitt once threatened to send her to the Betty Ford home for horse addiction, but notes just as quickly that there is no cure. Just as there is no cure for MS, there is no cure, either, for joy, for the will to thrive. It is immensely important, she advises, to discover or rediscover those things that one truly loves, by which he is moved, engaged and pressed.

In my case, this was a love of writing. In younger years I had written many stories (some of them actually published!), but had fallen out of the habit in favor of things that seemed more pressing, or at least more necessary. And yet, within a year of being diagnosed with MS, I wrote my own book about living with MS. And although even a well known agent was unable to place the book with a publisher (books about disease are not wildly popular), I’ve been writing ever since, and every day with eagerness and vigor. As with the combination of Ann Romney’s physical deficits and the challenge of horse riding, the task of writing has been challenging for me, given the cognitive and memory deficits caused by MS. We try a little harder, we push a little harder, and we love a little more fully than before. We grow, as Romney points out.

“In this,” Ann writes, “I know I’m not alone: many people I have come to know that have endured hardship reflect that in some way they are grateful for their trial. It brought them greater understanding and revealed personal qualities they would not have developed any other way. No, we don’t celebrate the hardship and pain, but we do recognize what it has brought out in us.”

Regardless of fame and fortune, Ann Romney seems from the first paragraph as much like the neighbor next door as … well, the neighbor next door. She presents her story with compassion, wisdom and humor - not a tale of riches and high society, but of family, marriage, motherhood, children, faith, humility, and of a monster called Multiple Sclerosis.

Though the book is chiefly about MS, the reader is also provided with a fascinating inside view of politics and of the intimate details of two Presidential races, and it is this facet that will initially draw the interest of readers who have no experience with or particular knowledge of MS. Which is good, for awareness is ultimately the primary mission. Still, I think that the reader, whether or not he has MS, will come away with a greater appreciation of the simple humanness even of Presidential candidates, the genuineness of their convictions, whether we personally agree with them or not, and the common love of country that inspires them to seek office. In this sense, too, Ann Romney has invited us to be more aware, more compassionate and more involved.

Friday, October 9, 2015

Day Trip

Went to put on my brown sandals this morning only to find that they were much, much too small for my feet, which seemed to have grown enormous overnight. How can it be? Had the sandals themselves shrunk? No matter how I tried, I could not force them onto my feet, any more than O.J. could force that potentially incriminating glove onto his hand. Brain freeze thaws only slowly, but of course I realized at last that my wife has a very similar (though significantly smaller) pair of brown sandals, and it was these, not my own, that I was trying to shove my monstrous feet into.

Got the proper sandals on, then decided that it might be fun to drive down to Sanur, park near the beginning of Tamblingan, and walk up to Starbucks. As it turns out, it wasn't much fun, although it was quite hot.

So, Richard is now sweating at Starbucks and missing the old days, when motorbikes were horses and you could whistle for them to come get you.

It is interesting to note, however, how much new stuff has gone up and how much old stuff has come down along the way. I see, for instance, that Laser Bar is empty and boarded up - either closed for good or closed for remodel, I don't know. Oh well, it was always a dive, anyway. I imagine that the popular Casablanca has made it difficult for other nearby bars to thrive. Some places that used to seem permanent fixtures now either stand empty or have been replaced by new, upscale establishments with prices that deter entry but all but first time tourists.

Gus's Coffee

So, if you go to Gus's coffee shop, you can get a good, inexpensive cup of coffee - I chose the ginger coffee - but be prepared to visit with the owner, a delightful Chinese Jakartan who really, really likes to talk. His family has been in the coffee business like forever, and he is carrying on here. A true lover of coffee, he mixes each order in person with an intuitive eye toward what might be most pleasing to the individual (had he known that I was an American, he would have used a stronger ingredient of caffeine, he said).

Thursday, October 8, 2015


"The point is, ladies and gentleman, that greed, for lack of a better word, is good. Greed is right, greed works. Greed clarifies, cuts through, and captures the essence of the evolutionary spirit."
--Gordon Gekko

And by the same token, corruption, in Indonesia, is good. Graft is good. It is good for the government, it is good for the ruling class, it is good for the powerful and for those with their hands in the pockets of the powerful. It is good for the crippling of the masses, the subjugation of the disinherited, the protection of the privileged. It is good for the future of the few, their families and their friends. Graft is good business, corruption a solid and reliable investment.

Tuesday, October 6, 2015

The Little Farmer

After returning from snorkeling at Menjangan Island yesterday, we were sitting at a table in the warung waiting for our nasi campur and, although I should have been listening to what my wife and her friend were saying, I found my attention fixed instead on a little boy as he played in the dirt near our table.

He had brought a package of some kind of powdered stuff he had been eating and he emptied the remainder of the package's contents very carefully on the ground, distributing it in a line along the concrete edge of the warung's platform. Taking, then, a plastic fork, he began to work the powder into the soil from one end to the other, taking care that the powder was fully implanted beneath the dirt, tongue working pensively at the corners of his lips. When the fork became too clumsy, failed to be thorough, he would drop it and use his fingers to perfect the task -- and I came to realize that this boy was not playing at all. He was farming. He was planting crops. He was doing what he had seen to be done in his world, by his elders.

And I remembered playing like that when I was a child -- or, again, not playing, but constructing, preparing, creating. Under the porch in the summer, we moved dirt with little metal trucks, painstakingly building roads, clearing lots, stacking little stones, making the highways and streets and side lanes of entire towns.

We interacted then with the earth, with soil and moisture and stone and vegetation. We grew very, very small and entered our microcosm somehow bodily, occasionally glancing up at ourselves as one might to the peaks of surrounding mountains, pausing to brush away sweat with a dirty fist. We built things, improved them, and improved them again, and in the winter the rains made new worlds in waiting.

Young people now play within computer screens, in an electronic world that they do not touch. Generally, they do not build, but destroy. The object is to erase, to obliterate, to be the last one standing. How different from ourselves we have become, how detached, how simple. What world is this, that has no farmers, no builders, no manual labor? What goes missing when we no longer touch the earth nor soil the hand nor lift the stone nor wipe the brow? Where are the mountains that used to need moving?

Saturday, October 3, 2015

Tilting with Windmills

Just then they came in sight of thirty or forty windmills that rise from that plain. And no sooner did Don Quixote see them that he said to his squire, "Fortune is guiding our affairs better than we ourselves could have wished. Do you see over yonder, friend Sancho, thirty or forty hulking giants? I intend to do battle with them and slay them. With their spoils we shall begin to be rich for this is a righteous war and the removal of so foul a brood from off the face of the earth is a service God will bless."

"What giants?" asked Sancho Panza.

"Those you see over there," replied his master, "with their long arms. Some of them have arms well nigh two leagues in length."

"Take care, sir," cried Sancho. "Those over there are not giants but windmills. Those things that seem to be their arms are sails which, when they are whirled around by the wind, turn the millstone."

— Don Quixote, Cervantes, Part 1, Chapter VIII.

A modern pastime - jousting with windmills, imagining that they are giants. Take care, the monsters are in your head, and have caught you in the snare of your own evil imaginations. Thus, you hate, you plot, you kill in the name of lies and delusions.

The News

When I was a very young man, just out of college, I worked as a stringer for one of Portland's two newspapers at that time. Now, there is only one, but that's no fault of mine. As far as I know. Every day, I read the paper from cover to cover, and by the time I had been there for a year, I found that I had gotten so sick of "the news" - the killings, the wars, the politics, the kidnappings - the constant trouble and unrest plaguing mankind - that I just stopped reading it altogether. I cannot help but note, now, that I'm beginning to feel the same about Facebook. The news itself is bad enough, but what is even worse is the gross unkindness of many who respond to the news. It is keenly discouraging, and often actually depressing, to see these ugly snapshots of the worst in human nature. Better just delete all sites that concern anything other than dogs doing tricks or pictures of food.