My Journey with Multiple Sclerosis

A short time ago, I was contacted by a representative at MyTherapy who wondered if I would be interested in writing a piece about 'my journey with MS', which she found interesting for the fact that I and my MS had ended up in Bali, Indonesia. I was willing, of course, although somewhat trepidacious about the prospect of putting something together that would be cogent. To be honest, I approach any writing project with some trepidity these days, as order and cohesion in a longer piece of writing have become challenging, at best, as has simply finding the individual words that I want to use. Entire dictionaries seem irremovably stuck on the end of my tongue. Even now, I am told by the spell check that trepidacious and trepidity are not words. Yet, I insist that they are. 

More often, these days, short paragraphs come spilling out of a sudden, just there in my head, somehow, which I then transcribe, almost as if they had been dictated. 

Nonetheless, I was pleasantly surprised by how accessible this story was, how easy it was to compose, and how long, without, one hopes, being confusing. MyTherapy has published the article in two parts. Please see part one below (or follow the link: https://www.mytherapyapp.com/blog/journey-with-multiple-sclerosis). Part two will follow in the next few days.

Traveling with MS: My Journey from America to Bali - Part One of Two

Life with a chronic condition such as multiple sclerosis (MS) is often described as a journey. Such terminology is particularly fitting for Richard Boughton, who left North America for the first time in 2010 when he traveled to Bali, Indonesia, three years after being diagnosed with MS. He has lived there since, scribing two blogs about his and his wife’s life on the volcanic island: Everyone Here is Jim Dandy and My Practical Paradise. Richard has been kind enough to share his story with us, from his diagnosis a decade ago, to his recent experiences and travels in Southeast Asia.

A guest post by Richard Boughton

In the spring of 2006, I became a newlywed – not for the first time in my life, but a newlywed, nonetheless. I had gotten out of a long, unhappy marriage, had spent a few years on my own, and then I met a beautiful, lively young woman, with whom I was almost instantly ready to spend the rest of my life. She was significantly younger than I – a reasonable cause for caution – and she was also originally from a faraway part of the world called Indonesia, about which I knew nothing (although she had already resided 10 years in America and spoke English fluently). Coincidentally, we discovered that we went to the same church, enjoyed the same nightclub, and frequented the same Starbucks. It seemed like kismet, right? I was healthy, I was energetic, felt sharp and able, and I was ready to begin a whole new life.

A year later, I was diagnosed with multiple sclerosis.

There was no obvious run-up to this, no clear hints or warnings. I simply woke up one morning unable to feel my right foot. By the time I got out of bed and moved around a bit, my left foot had gone numb as well, and the numbness had soon climbed up both legs and into my crotch.
Within days, it was determined, through examination, MRI and lumbar puncture, that I had multiple sclerosis. No doubt about it. My MRI was “classic,” they said. I can think of better things to be classic at; nonetheless, I had produced an MRI that was classic for a specific disease process. Well done.

I was vaguely aware of the disease by name, but I had little idea of what was involved, or what it would mean to me personally. I was much better acquainted with cancer, having seen my brother, my father, and my mother die of that illness. Always the odd one out, I guess. I couldn’t just get cancer, but had to get something outside the family tradition.

In the weeks and months that followed, the numbness retreated from my legs, yet set up permanent camp in my feet. I developed symptoms of profound fatigue, issues with stamina and balance, and most problematic of all, an inability to think straight or perform reliably on a consistent basis where mentation is concerned. This was more than personally bothersome. It was a threat to the continuation of the career in which I had been employed for nearly twenty years, as a patient information specialist in a major medical center. It was a job that required mental sharpness and speed, an aptitude for detail, and a ready memory. And yet, sitting down at my desk one morning, I found that I had quite forgotten my own username and password. Yes, the very ones I had used for the past 20 years! I had been aware that I was gradually slipping, that it was taking me longer, that I was having to search – but this was more than a slip. This was an epic failure! How was I to continue in a job that demanded not only a high degree of personal competence, but involved as well a distinct responsibility to so many patients?

Well, I started out with the normally prescribed measures for newly diagnosed MS. I was put on a regimen of interferon injections (Avonex) and dispensed a number of medications for numbness, for fatigue, for tingling sensation, for reduction of inflammation, and, best of all, Vicodin for pain. Suddenly, I was the proud administrator of my own personal pharmacy.

The problem is, none of these medications helped very much, and the main course among them – the Avonex – was downright deadly. They told me that the noxious effects would diminish over time – the nighttime fevers and chills, the aches, the nausea, all the flu-like symptoms. And so I waited, and was patient. And over a year or so, the side effects did not diminish, and, finally, I experienced the next closest thing to a seizure while lying in a warm bath.

So much for Avonex.

Next, they put me on Copaxone. I did not want to take this, or any other injected therapy at this point, but I was told by my doctor that he would have to “fire me” if I did not.

Copaxone did not cause flu-like symptoms. It caused, before long, a kidney stone. No one warned me of this possibility. I had to discover it for myself by reading the literature. For those who have not suffered a kidney stone, I can say in a brief manner, that they are basically worse than death. And certainly, to my mind at that time, worse than multiple sclerosis.
Therefore, I quit Copaxone, was fired by my doctor, found another doctor, and my life with multiple sclerosis marched on.

During this same period of time, my new wife had not responded well, either, to my disease. This may sound strange at first to the people who are actually suffering the disease. Like, How dare you claim that the disease I have to suffer is a burden to you?! Are you kidding me? But here’s the thing – others do suffer because of this disease, because of what has happened to you, because of what has been taken from them. My wife set out to marry a certain man, full of life and energy, youthful enthusiasm, an adventurous spirit, and ended up with someone else – tired, confused, uncertain, unwell. In short, I was not the man she had married. The unfairness of the thing that has been inflicted on you has been inflicted on others as well, especially on loved ones who had hoped for so much, dreamed so much, anticipated so much.

I cannot help but remember how it was with my own mother, for whom I provided care during the few years of cancer and Alzheimer’s that led to her death. Though I loved her deeply, though I took care of her every need, from medication to diaper changes, I could not help but occasionally succumb to a feeling of anger, popping up, however unwanted, at a moment’s notice. How could you possibly not know me? Your own son. I’ve been with you for nearly 50 years! How is it that you don’t know my name? How is it that you believe I’m just a caregiver in this home? It’s me, Mom. It’s Richard. Please come back. Please just try.

One does not like to disappoint others. A man, especially, does not like to disappoint his wife. Yet, in our own bitterness, immersed in our own accidental fate, we must acknowledge the bitterness felt by others. We must acknowledge their feelings, whether noble or not. Common people, after all, are rarely noble. Common people succumb to anger, to disappointment, to grief, to depression.

And common people have issues of their own. For it was during this period of time as well that my wife was diagnosed with bipolar disorder, a condition wherein a person may swing from one emotional state to another, unable to find and maintain a balance between extremes. The woman I knew from the outset as positive, eager, fun-loving, caring, was also subject to a darker side, to sadness, depression, anxiety, despair. And there’s nothing like the illness of a loved one to flip that card, to turn that corner, to dim the light of a hopeful future.

From time to time, over the months, we spoke of Indonesia, and of Bali. Although my wife had been born in Jakarta and spent her childhood there, she had moved to the island of Bali as a young woman and worked there for a tourist agency. She had fond memories of Bali and had always wanted to return someday. It was one of her dreams for the future. The more we spoke of the idea, the more real it became, just as surely as MS became more real and her own depression became more pronounced. I began to think, Why not? What’s keeping us here? Isn’t it possible that this is just what she needs now to thrive again, to live anew, to be back among her people, in the midst of her own culture and language? And what about me? If I am looking at a normal progression of MS, if I am looking at eventual disability, why not take the time I have left and do something new and exciting, something exotic and far outside of doctor’s offices and hospital wards?

Fairytales can come true, it can happen to you, if you’re young at heart ….

Were we thinking in a magical way? Did we imagine that we could leave all illness and all disappointment behind simply by packing up and moving to the other side of the world? Possibly so. Deep down, that was probably part of our plan.

But, in any case, it did become our plan. We began to take the steps we would need to take. I retired early, put my savings in a mutual fund. We sold everything we could and, during the final week in America, we moved the rest to the basement of our church – chairs and tables, beds, curtains, an electric keyboard, books and bookcases – to be given to charity.

Before we knew it, we were on a plane to Bali, with one stopover in Tai Pei.

I was newly diagnosed with retirement, just as suddenly as I had been with MS.

---

Part two of Richard's journey with MS will be posted in the coming days

The Photos

My oldest childhood friend recently contacted me to say that he had come across some old photos of me and my family and would like to send them to me here in Bali. He does not remember how he happened to end up with these photos, nor do I. I am glad, however, that he had them, as I had previously thought all my old photo albums had been taken to the dump by my ex-wife. 

The photos came in a big envelop today -- many more photos than I had imagined -- and what a joy it was to see all these people again -my mother and father and brother, my cousins, aunts and uncles, childhood friends and beloved dogs. It's funny how a photo can instantly restore one's memory. I can look at almost every photo and remember being there, with these people, what we were doing. 

At the same time, there is a sad feeling. Each moment captured seemed so permanent at the time, each person so permanent. How casually we posed in each frame of time, not knowing that everyone and everything that we saw and touched and loved would so completely pass away from the world. I can tell the story told by every photo; I can hear the voices and feel the breeze and smell the trees or my mother's perfume or the scent of the rain; I can feel the sun and the water on my skin. It is all here forever, yet gone forever.

And I think now, as always, of how fortunate I was to be at the center of such a family, to be the beneficiary by birth of such strength and devotion, of such a mother as mine, of such a father as mine -- and I feel, somehow, that I have betrayed it all, that I have not become what they were, nor what I was meant to be. I feel fractured in the face of such wholeness. 

I don't know ... maybe everyone feels that way. 

Eruption

Mt. Agung, to the northeast of Denpasar, now begins to erupt. Thus far, this is in the form of a towering cloud of ash, which, today, has closed the airport for safety purposes. Molten lava is still filling the crater of the volcano and the greatest fear is that this will soon spill over and down the slopes into the populated areas below. The government has so far done a good job in evacuating citizens, but many lives and livelihoods will be affected nonetheless by a major flow of magma.

Xmas in Renon and Elsewhere

Xmas music at Starbucks Renon opens doors to another time and place, frozen avenues, memory sculptures, still in motion ... stepping into the feet that have already stepped into the drifts of snow ... cars crawling bravely along 99th Avenue, chains clanking against fenders, pressing the new-fallen shivering snowdust to shiny, gravel-speckled canals of ice ... crossing the tundra-like parking lot, vacant as a glacier but for one car proceeding sideways, breaklights blinking, hapless, fruitless, mittened hands held fast by a pointless steering wheel ... twinkling lights peering through the all encompassing frigid cloud of morning, falling slowly with the patient snow and winking across the wet black slate of cement that has been cleared in front of the Starbuck’s door ... and within, music, and cold new noses, diminuitive foot-shaped puddles leading from door to counter, hats and coat-shoulders decorated with a frosting that melts while the order is awaited, windows so completely fogged by the warmth within that one can longer see the winter without ... laughter, steam, handless gloves resting a moment by the cup and the plate, wreathed by red and green and checkered scarves ... and music which declares and repeats and repeats again the word of joy, contentment, expectation, peace. Christmas at Starbucks, Portland, Oregon, a long time ago, just yesterday, just now. 

What Is Right

Doing what is "right" is often not easy, and it often comes without any tangible personal reward. If something is painful, if the flesh cries out against it, if it would be so much easier or so much more immediately satisfying not to do a thing, then you're probably looking at an act that is "right". Because you have chosen what is right, you may well suffer. You may well invite the ridicule of others. The right you have done may be called wrong, or foolish, or may, more likely, be simply ignored. And yet, this one thing remains: You will be able to look at yourself in the mirror and feel an everlasting peace; for obedience to the flesh, to anger, to malice, to pride, to reprisal brings only self-loathing and a reflection that is dark, and fearful, and obscure. 

"He who looks into the perfect law of liberty and continues in it, and is not a forgetful hearer but a doer of the work, this one will be blessed in what he does" (James 1:25). 

Into the Water

This second novel by Paula Hawkins, whose first novel, The Girl on the Train, was wildly popular and generally well received critically, has been faulted by many reviewers for having 'too many characters, insufficiently differentiated from one another.' As far as this goes, I have to agree to some extent. There are indeed some characters who show up very rarely, and by the time one sees them again, he has forgotten how they fit into the story. And there is a bit of a problem with 'voice' here and there. The main characters, Jules and Lena and Erin, are well drawn and instantly recognizable as individuals. Other, more minor characters seem rather flat and neutral -- plot devices rather than people. 

Having said this much, however, I will be quick to add that this second novel represents a significant growth for Ms. Hawkins in novelistic maturity. It is a much more complex novel than the first and explores some deeper themes of human experience, of human weakness, of emotional trauma and all-too-human reaction to the same. Hawkins does nicely with filling these pages with the 'water' in her title, through image, prose, insinuation -- that fluid element, that darkly compelling, deep and dangerous element in which we find ourselves either on the edge or fully immersed. 

For me, this is a courageous novelistic effort wherein the author has pressed at and expanded her own abilities as a story-teller. There is a hint of Faulkner here, and of DH Lawrence, and, one hopes, of the Hawkins to come when she composes her third novel. 

The Not So Common Cold

I had almost forgotten how truly ugly a common head cold can be. It has been quite a long time since I had one.  I can't say that I've missed having a cold, especially now that I have one, but I did kind of like the idea of getting a cold, because this would mean that my immune system had backed off enough to let a common illness through, which would mean, theoretically anyway, that it had stopped attacking healthy nerve structures for the time being. The mental mistake one makes is that those nerve systems that have already been damaged and have been causing their various pains and troubles will somehow be 'well' again. Not so. The damage is done, and is not 'undone' by a cold. The result is that the symptoms of the cold itself -- body aches and congestion and sniffling and coughing -- exacerbate the existing neurologic damage already done by MS. If your neck was stiff and sore to  begin with, it is now stiffer and sore-er. If you were already fatigued, you are now exhausted. If you couldn't sleep well because of the pain at night, now the situation is even worse, because you cannot breathe at night, and you cannot stop coughing. In short, the joy of having a cold, as it pertains to the disease process of MS, is wholly theoretical. On top of this, we know that the repressed immune system does not do a very good job in fighting off common illnesses, such as the common cold, and so one cannot help but wonder how uncommonly long this common cold will last.

Morning Guest

Every morning this week, I have found, upon awakening, the big fat brown dog sleeping in the spare bedroom. This is unusual. Often enough, she will enter the house sometime early in the morning and, finding no one awake, will either leave or lie down by the door, but now she has decided that our son's old bedroom is hers. Moreover, she appears to have come to sleep rather than for food, which is also unusual. I can't help but wonder if she's not looking for a final place to just close her eyes and move on to doggy heaven. Then again, perhaps she is simply weird. Who knows what big fat brown dogs think? 

The Curse of the Windigo

Recently, I finished reading the excellent second installment in Rick Yancey's Monstromologist trilogy. As with book one, The Monstromologist, this second novel, The Curse of the Windigo, is categorized as a 'young adult novel'; and, as with book one, I really don't see why. Is it because the main character, young Will Henry, is a young adult? But if so, wouldn't that make, say, Catcher in the Rye a young adult novel as well, or Great Expectations, or Lord of the Flies, or even Robert Louis Stevenson's Kidnapped and Treasure Island? But no, The Monstromologist, is no more a young adult series than any of these other titles. It's a small point, I know, but it annoys me. Mr. Yancey writes with a sophistication, in prose, in vocabulary, in theme and in character development that is quite perfectly adult. These two novels, with a third on the way, deal not only with monsters, but, on a deeper level, with what is monstrous in common human beings. They deal very artfully with matters of the head and matters of the heart in conflict, with what is healthy and with what is crippled in the human soul. In Windigo, we see the progression of a complex relationship between an orphan, Will Henry, and his guardian, a sometimes kind, sometimes cruel, generally self-absorbed and anal retentive 'man of science' by the name of Dr. Warthrop. It is not so much the scientific education of Will Henry that is the center of this series, but the moral and emotional education of Dr. Wartrop's own soul. Reminiscent of Hawthorne and of Edgar Allan Poe, of Wuthering Heights and Dr. Jekyll and Mr. Hyde, these novels are serious contributions to the gothic tradition, and, honestly, more worth reading than many of the empty-headed popular novels of our day. I can't wait for the appearance of the third in this series (which is likely already available in English, but here I am in Indonesia, awaiting the Indonesian language translation!).

The Wonderful Flu

Hey, I got the flu! Fabulous! It means that my overactive autoimmune system has stopped its marauding for the moment, its attack on friend and foe alike, and has allowed a common illness to develop. Ah, what a pleasure to be sniffing and coughing and aching and moaning - just like a healthy person! One problem, however: In setting out my customary morning pills, I accidentally included two different types of cold pills. So ... goodnight for now.

The Beetles

Having spoken of the rain, I would feel remiss not to mention the flying brown Bali beetle as well, for he comes along with the rain as surely as puddles come along with the rain. 

During this season, directly after a downpour, you will see a follow-up downpour of these brown beetles, seeming to have been suddenly birthed by the rain itself, and equally storm-like in their own way. They appear in great swarms and have as their goal the inner part of any house they see. They fly in on large brown wings, which straightaway fall off, leaving the much diminished bug running around chaotically on the floor, discarded wings wafting about on their own.

As it happens, these bugs are a favorite snack for the lizards, cicak and tokek alike, and therefore one will see a swarm of these reptiles as well, rushing to the feast. (My wife tells me that the bugs are 'high in protein', which explains, I guess, the dietary wisdom of the lizards).

So, the hunt is on. The lizards rush up and down the walls, gobbling up the tasty morsels. Wings or no wings, they are apparently delicious either way (and, yes, nutritious).

When the rainy season ends, the beetles are gone as well. One does not see them again until the next rainy season. But one remembers how they filled the air, as dense as the rain itself, and feels, curiously enough, a certain pleasure at their return, as if, like snow, they were a winter tradition. 

French Press Face

My wife is using a new skin treatment. This involves brewing a pot of French press coffee, keeping the grounds after, hopefully, drinking the coffee, letting them sit for a day or two until they've turned to a sort of dark, sticky mud, and then applying this, like soap, to the skin when she showers. 

"My skin is so soft!" she exclaims, "so smooth. It usually feels so dry at night, but now just feel it!" 

The skin is an organ of the body that most men don't spend a lot of time thinking about. To be honest, I suppose that the greater part of our attention is directed toward the sex organs. Whether my own skin is particularly dry or rough, I would not know. I like soft skin well enough, when it belongs to someone else, but know little about my own.

Not so with women. They cherish the skin. They fuss and worry over the skin. They pamper the skin. They rub mucky coffee grounds on the skin. They apply masks at night, composed of mayonnaise and avocado, ingredients more generally associated with a salad. Men are more likely to use WD-40 for the removal of a blemish. Hey, it works. So what if I smell like a garage?

Ah, the wonders, the mysteries, the condiments and conceits that compose the eternal divide between the sexes! 

Rainy Season

Well, this is shaping up to be a pretty rainy rainy season here in Bali. This has varied over the past seven years. Our first year here in Bali, 2010, saw little rain at all. For that reason, having never been to the tropics, or, indeed, outside of America (except for a couple brief trips to Canada), I had the happy, though false impression that this would be the normal course for the weather here. 

I found out differently during the course of years 2-7. Rainy season in Bali generally begins in October or November and extends into the early spring. One will very rarely see a day of constant rain; rather, the rain gathers itself in dark, swollen, bulging clouds, the air becomes tense with a breathless, suffocating humidity, and then the heavens break loose in buckets and tubs and tanks of water, assaulting the earth with a certain inimitable fury (a bit like my wife's temper). But it is a short-lived fury, generally exhausting itself within 10-20 minutes, lifting just as suddenly, as if a switch had been thrown -- on, off. The sun creeps back into view, poking tentatively between the fleeing clouds -- like, Holy Cow, what was that all about? 

The same show will play perhaps two or three times a day. Motorbike drivers, constituting the majority of drivers here, will have hurriedly pulled to the side of the road to don their (supposedly) rain-proof smocks, and at the end of the fit, will stop once again to shed their smocks, and find themselves pretty much as wet with sweat as they would have been with rain anyway. A number of vehicular accidents will typically have occurred, testifying to the general unwillingness of the common Indonesian motorist to understand that the oil and dirt on the dry streets will have become as slick as snot in the rain. Other untoward circumstances may occur as well. Tree limbs, unaccustomed to the wind and the pelting of the downpour, may break and fall. I know, because I was hit by one in the midst of a typical rain storm a few years ago -- not a stick or a flimsy branch, but an entire part of a tree. This, of course, knocked my motorbike over as well, spilling me onto the street. In fact, two of the three accidents I have been involved in occurred during a rainstorm. The answer to this danger, as I have concluded, anyway, is to simply stop and take shelter in the nearest shop or warung, and wait it out.  Because the alternative -- that is, falling off your bike and hitting the street -- is a distinctly painful one, and best avoided.

Now, during the time it has taken to write these lines, the full fury of the storm has passed and diminished to a light sprinkle, with blue sky already peeking through the clouds. Another five minutes will bring partly sunny skies and the streets will quick-dry as fast as you can say The rain is Spain falls mainly on the plain. Some, as I say, will have had an unpleasant encounter with the pavement. Many will find their laundry, which had been hung out to dry, fully soaked and in need of re-washing. Dogs and cats will have enjoyed a rare bath, and rainy season will proceed; for here, as with every clime in the world, the words of Mark Twain ring faithfully true; to whit, Everybody talks about the weather, but nobody does anything about it!

Self Treatment

One of the things I like best about multiple sclerosis (how's that for a positive opening?) is that once you kind of learn the ropes and understand the disease processes, you can self-treat through common sense measures, thoughtful research and intuitive experimentation. In the US, of course, one would get regular MRI studies, but one has to wonder how useful those are anyway. One discovers, per the imaging, whether his disease has progressed or not progressed, but one probably already knew the answer to that simply through an awareness of what symptoms he is or is not suffering. One can get an MRI here in Indonesia, too, but of course they are very expensive, and I think the machinery they use is nothing more than a modified Etch A Sketch. Add in the fact that the doctors, blissfully unaware of MS, don't know what they're looking at anyway and ... yeah, you get my point. 

We become aware, through research and through practice, which medications are effective for the various ills associated with MS, we are able to study and treat our own symptoms. In Indonesia, this may often mean seeking medications of the same basic composition under different names, and for this, one seeks a helpful local druggist who is willing to forgo bothersome matters such as the need for a prescription and such-like. 

For the persistent neuropathic pain in my neck and shoulder, I have experimented with exercises and massage, in addition to certain medications, taken mostly at night. We are often inclined not to perform movements that are painful because 1) they are painful and 2) we fear that they might worsen the condition. But pain is sometimes necessary to encourage the strengthening and relaxation of targeted muscles. I have found that the pain experienced when turning my neck to the right can be gradually released by turning to the right anyway while working the muscles with a kneading of the fingers along with some kind of warming oil (called minyak gosong here in Bali). One can actually feel the tight cord of muscle in the neck that has stiffened and become inflexible as a reaction to the initial injury (the damage and destruction of nerves in the area). As I press and massage this area, the muscle begins to relax.

I discover as well that simply sitting in the sun is quite helpful, both for the localized pain, and for the MS condition in general. We know, of course, that natural vitamin D comes from the sunlight, and I reckon that the burning, intense sunlight in Bali must be absolutely packed with the stuff! And while you're sunning, a swim in the warm sea is also helpful, as there is no bed more cozy than the salt-heavy sea.

In short, the wonderful thing about MS is that there is no cure. There is only symptomatic treatment, and you can manage that on a sunny beach or a mountain cabin or whatever setting you find most peaceful. Peace, that's another key, isn't it. Acceptance. Adjustment. Diversion. Joy. And lots of coffee.

Wintertime at Home and Abroad

When wintertime, otherwise known as rainy season, comes to Bali, day-to-day life can get a bit dreary. There is something about the chill of an Oregon winter that is enlivening in itself. Here, the weather is as hot, or hotter than ever, and the only difference is that it rains several times a day. Preceding these fits of rain is a sort of suffocating humidity, then the sky breaks loose and the rain pours down and people who were unlucky enough to be on their motorbikes at the time are soaked to the skin, and then ten or fifteen minutes later, the sky breathes a heavy, exhausted sigh, the rain stops, the streets dry almost immediately, and life goes on. In short, it's monotonous. 

Nor do we have the traditional winter holidays of America to divert us. Halloween does not come. Thanksgiving does not come. The Christmas season does not begin. One anticipates nothing. Not even snow. We do not have milestones to mark the time, to send us out shopping, or decorating house, or gathering with relatives and friends, of sending gifts and cards in the mail, or walking out to a Christmas light show. We have rain. And heat. And heat, and rain. 

Of course, the Balinese have their holidays, such as Galungan and Kuningan. But these are foreign to our hearts. We do not know what they mean. We see them from the outside, curiosities wrapped in inscrutable tradition. 

We do not have the surprise of the first snow, or mittens, or boots, or heavy jackets and scarves or snow shovels, or sleds, or red noses and chattering teeth. We do not have the simmering house filled with the aroma of turkey and dressing and gravy and spiced punch and candied yams and pumpkin pie as the icy wind beats against the door and the Christmas wreath shivers on its nail. We do not have the tree and the scent of pine and the twinkle lights and angel on the top, and there is no Christmas morning. Santa Claus does not come here. 

So, I miss the winter. I do. And yet, if I were there, I would probably find a reason to miss being here. 

ng

In English, we don't have the "ng" sound. In Indonesian, they do. Lots of it. How does one pronounce the "ng" sound? I can't tell you because ... well, because we don't have it. 

Take the word "Bingung", for instance. One imagines that it would be, in English, something like 'bean-gung'. It's not. It's 'bean' followed by 'ngung'. And I cannot tell you how to say 'ngung'. Because I don't know how to say it myself. 

I tried the word in conversation with my friend, Iadi, the other day. 

"No, no!" he said. "It's not Bean-gung, it's bean-ngung. 

After a bit of practice, I got close enough to satisfy Iadi. However, the next time I uttered the word, we had the same problem. 

"No! No! Ngung!"

Sigh. 

One may add to this that there is a soft 'ng' and a hard 'ng'. Take the words Manga and Mangga. The second one is pretty easy for us. It sounds like 'Mang-Gah'. (As it should). The first ... well, there's that dastardly 'ng' again. Nguh, nguh, nguh. If you say it enough times, you begin to sound like Felix Unger, from the Odd Couple, in the scene where he was trying to clear his sinuses. (If you've seen the movie, you'll know what I mean. Otherwise, never mind).

 

Villa Vayu

Sometimes it pays to have wealthy friends … or rather, to have a wife who has wealthy friends. It’s all the same when you are both invited to stay a couple nights at a posh Seminyak Villa.

Vayu is one of two villas owned by John, an Australian friend. Both are situated among a sort of community of villas at the heart of the tourist district of Seminyak. The curious thing about these villas is that although they are tucked right into a district full of restaurants, shops and nightclubs, the villa environ itself is quiet and peaceful. How this bit of magic has been engineered, I cannot say. Perhaps something to do with the local Bali gods?

In any case, Villa Vayu, like most villas, is built around a central swimming pool and garden. Facing the pool are two suites, complete with king size bed, wardrobe area and outdoor bath and shower. And, of course, hot water. I mention that, because most places here, occupied by normal people like myself, anyway, don’t have hot water. Except when it turns warm from the heat of the sun alone. Not that we really need hot water, but it’s just nice sometimes, especially after a swim, or first thing in the morning.
Speaking of which, each morning the villa staff arrives to prepare a breakfast of your choice, and will then tidy up for the ensuing day.

It’s a little taste of luxury to salt the normal pattern of every day life.

Emotional Trauma and MS

I have always suspected that emotional trauma has a big effect on MS. I have assumed instinctively that it has been an ingredient behind many of the relapses I've suffered. I decided to do some research on the subject recently, given that I have been going through a long period of emotional upset, which has been accompanied by a rather significant decline in my condition, and I found that indeed the effects of emotional trauma on multiple sclerosis are well documented in any number of neurologic studies. These findings are accompanied by the evidence of new lesions on MRI scans. I suspect, moreover, that such trauma can actually be the factor that initially induces MS, or, in other words, causes what had been dormant to spring to life. Of course, I can recommend no treatment or palliating measure for this, other than to rent a small cabin in the woods and become a hermit. I merely find it interesting that this is a documented reality. I suppose that one could, to some extent, try to fend off the effects through awareness, or prayer, or meditation. One can also understand more fully, on a personal level, how damaging our words and our actions can be -- damaging far beyond the common sense of hurt feelings or unhappiness, slicing, rather, to the core of the body itself, to the stability of the central nervous system. We can at least, through what we suffer, have a greater understanding of the damage we may inflict through a failing to love, respect, to take care with our fellow human beings. As with many aspects of MS, there exists that opportunity to become more fully human, to grow in understanding, to become more than we were before.

And the Troubles March On

The cursed pain that began well more than a year ago behind my right shoulder blade continues to morph into new variations. At first, as I have mentioned, it was very sharp and relentless. As the sharp sensation has waned, the area of discomfort has spread from shoulder to beneath the ribcage, and even down the right leg, particularly in the morning. Sometimes, upon awakening, my right arm will be essentially dead and needs to be shaken back to life. In the neck and shoulder, the pain is more of a tense stiffness. I have still not found anything in particular to alleviate this during the daytime, although Xanax works at night (or rather, I don't know whether I am in pain because the Xanax has put me to sleep). The intensity of the pain varies -- worst when sitting, better when moving about. It takes me a longer time each morning to kind of shake all the screws and bolts loose. Strangely, a cold shower always seems helpful. I continue to assume that this is neuropathic pain, as I think a mechanical injury could hardly last so long, and because it is somewhat alleviated by neurologic type medications, and not at all by pain or inflammatory meds. Dead tired of it, that much I can say for certain. 

Solo

Took a three-day trip to the little town of Solo on the island of Java, population about 500,000. Solo is a sleepy little place, compared to the big  cities of Java, as well as the tourist bustle of Bali. This was my third trip to Solo, and it is, for some reason, one of my favorite spots. Perhaps it reminds me of my old home town of Portland, Oregon. Solo is a bit cooler than Bali, and when it rains, it actually gets rather chilly — which is a nice change. When it rains in Bali, it is still hot. The rain itself is warm. Also, when it rains in Solo, the rain is downright serious compared to the brief showers of Bali. Quite a show, with pouring rain, palm trees blowing sideways, lightening the thunder.

But I think the thing I like best about Solo is just the people. These are some of the friendliest people one can hope to meet. Given that there is not much to attract outsiders to this little town, the appearance of a foreigner, especially a bule, or a white person, is met often enough with a certain amount of fanfare. One time, for instance, I was walking down to the mall when students were just coming out of school for the day. Seeing me, they ran single-mindedly to meet the strange alien among them, dancing around me, each with a dozen questions, some practicing a cherished word of English, all following me down the street as one little girl, without a word, took my hand and walked beside me, as if I were her temporary father.

The Complications of Simplicity

Indonesian is said to be a fairly simple language. Even the Indonesians themselves will say so. And theoretically, they are right -- it is a fairly simple language, conceptually. 

But there are two problems. 

One is its abbreviated sort of structure. It's simply downright un-American, and certainly downright un-English. English is a language of many grammatical requirements, and its forms are very specific. You may say for instance, I am going to school, or I will go to school, or I went to school, or I go to school. In Indonesian, the whole ball of wax is contained in three words: Saya ke sekolah, literally 'I to school.' The particulars are implied in the context -- which is to say that the hearer will fill in the blanks according to the context in which the sentence is uttered. If there is any confusion, certain specifying words may be added, such as 'sudah' (already) 'belum' (not yet), or 'sedang' (in the process).

For those who speak English as their native language, the simplicity is ... well, way too simple. It is the foreignness of structure, therefore, that baffles. It is not a 'normal' way of expressing one's thoughts.

Secondly, although Indonesian is at its core a simple language, consisting of a much smaller vocabulary than English, it has been greatly expanded by the common people with all kinds of alternative words and colloquial expressions and forms. One may understand an Indonesian who is speaking directly to oneself, because he will be employing common, correct forms; but one will likely not completely (or even near completely) understand Indonesians as they speak with one another, as they will be employing a dizzying tongue of slang, colloquialisms, alternate words, and so on. Add to this that they may well be salting the whole conversation with words from a shared second language, such as Balinese or Javanese. For instance, when I arrived at the neighborhood Starbucks the other day, the Barista happily greeted me with the word "Tumben".

"Tumben? What is that?" I ask.

"Tumben? It's ... hmmm ... I don't know. Let's see now ... What is the Indonesian word?"

"You're asking me?"

"Ha-ha! Hmm. Oh! Sudah lama! That's it! Long time, no see. It's Balinese word."

There's a young fellow who works part-time as the parking attendant at the Circle K  store just up the street. If he is there when I stop by, the unspoken rule in that I must sit and chat for a while. Which I happily do. But to be honest, this young man's use of language is so terrifically heavy on slang, that I generally understand no more than half of what he is saying. He, of course, understands all of what I say because I am employing only the basic core Indonesian that all Indonesians understand. 

I was pleased, however, the other night when he said "Tumben malam" -- because I understood it! I learned it at Starbucks! 'Tumben: Long time, no see, plus malam: Nighttime = 'Long time, no see at nighttime', or, in English, 'It has been a long time since you've come here at night.'

Regarding whatever he said afterwards, I am still uncertain. 

The Pilot and the Plane

There are a fair number of people in this world, and more than one might imagine, who are essentially sociopaths. They move among us and appear normal enough as they go about the daily tasks of life. They are competent, in a mechanical sense. They drive cars, they work, they go shopping, they may even have a family. They work as candy store clerks and airline pilots and teachers and bus drivers, and entertainers, and politicians. They seem to function. They do function. Until, that is, their interest lands on a victim. Something they want. It is then that the putrid core of the sociopath overcomes the host. The world of 'others' no longer exists -- really, it never had existed within the secret mind that motivates this type. He moves then to possess that which he has no right to -- the life, the freedom, the dignity of another human being. It is all about his appetite now. It is all about filling himself for the sake of himself. How many must be destroyed in the pursuit of his prey? The number, to him, is meaningless. The people are meaningless. Even his target is meaningless. His appetite is the meaning, his pleasure, his power, his conquest. And when he's done, he beats a cowardly retreat. He has gotten what he wanted. He has eaten. And now he crawls back into a healthy skin which his moral and mental disease does not deserve. These are the parasites of our world. They eat, they hibernate, and they eat again. They are flesh, a mouth, and a stomach, and quite devoid of soul. They mimic the most precious elements of humanity -- love, friendship, relationship, loyalty. These are the tools they use in the hunt, no more lively, no more sincere than the metal of the hammer or the wrench or the saw.  The sociopath is a repetitive, redundant creature who leads a life of repetitive crimes against genuine, caring human beings who are infinitely more deserving of life than he. Justice? In this world, there is none. We may take heart, nonetheless, in the knowledge that this man, this mere lump of slithering, seeking flesh will find only darkness and void beyond this human time on earth.