Sunday, November 19, 2017

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.

Saturday, November 18, 2017

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. 

Friday, November 17, 2017


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!"


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.

Monday, November 13, 2017

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. 


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.