What Is It Like (an excerpt from Everyone Here is Jim Dandy -- the book)

What is it like?

It is not suffering as such that is so deeply feared but suffering that degrades --Susan Sontag, AIDS and its Metaphors

In May 2007 I was diagnosed with multiple sclerosis.

I woke up one morning, May 1^st I think it was, and I could not feel the toes of my right foot.

But could not feel is actually not right. It’s not that I couldn’t feel the toes, but that they just felt wrong. They were numb, starting in the big toe most profoundly and then spreading on down to the pinky. They were numb, like toes get when you’ve been out too long in the snow, only they were not cold in the least. It was, after all, the beginning of the summer season. They were numb and they were tingling—again, the way it feels when you have been out in the snow and then have come inside and begun to thaw out.

“I can’t feel my toes,” I said to my wife.

“Hm.”

“This is weird. I can’t feel my toes.”

“Walk around,” she said. “You probably slept wrong.”

Slept wrong, yeah. Or it’s all in my head.

But no, not only were the toes numb, but the numbness was

growing worse by the minute. Soon the numbness, the tingling, had begun to spread onto the top of my foot, and then it jumped over to the left foot as well, one toe tingling, then two, then all.

I shouldn’t have let my feet get so close to one another. Good Lord, now my right foot has infected my left.

Well shake it off then, just like a football player. Walk around, jump up and down, massage those muscles.

What? Toe muscles?

By the time another hour had passed, my right leg was numb to the knee, and the tingling that had begun in the left big toe had conquered the whole foot and pressed on into the ankle.

“I can’t feel my right leg,” I said.

“Well, what did you do? You must have done something.”

What indeed? I had been fine when I went to bed the night before. I had slept through the night, just the same as usual. So what had happened while I slept? Perhaps I had been bitten by some sort of deadly arachnid. I checked my feet, my legs. No welt. Perhaps I had been bitten by a poisonous snake. A ridiculous notion, that.

Then what?

“Honey, my crotch feels weird. My ass feels weird. I mean, I just now went to the bathroom and—“

“Call the doctor,” she says. “Spare me the details.”

So that was how it started. An MRI and a lumbar puncture later I was diagnosed with multiple sclerosis.

The funny thing, as I was to find out soon enough, is that the problem was not in my toes. It is in my brain.

*

What is MS like?

Having MS is like suddenly having to go from DSL to dial-up.

It’s like trying to do internet research on a laptop with a virus. The damn thing keeps freezing. Your brain becomes inexplicably wedged between one thought and the next—trapped in an endless loop—little hourglass on the screen—thinking, thinking, but never arriving.

Eventually you have to give up and reboot; which is to say you have to take a nap and hope that a little rest will restore a few of the washed out bridges.

MS is like trying to write a book on a stone wall with a dull three penny nail.

I am the man in the iron mask. The birdman of Alcatraz. I am tunneling to China, tunneling to eternity. I am locked in the Tower of London. Off with his head! What head? What hand, what foot, what leg? I am the man of adamant, turning to stone. I am a phantom pain, the itch in an amputated limb.

What is MS like?

It is like starting life from scratch, every day, every hour. It’s like taking one step forward and twenty steps backward. It’s like bobbing for apples in a barrel of applesauce.

It is like going to sleep at night and then waking in the morning to find that you’ve begun to turn to stone, starting from your toes and then climbing up your calves and thighs like some kind of malevolent cement.

And as the toes of the feet were partly of iron and partly of clay, so the kingdom shall be partly strong and partly fragile.

So said Daniel in his interpretation of Nebuchadnezzar’s dream.

Did Nebuchadnezzar have MS?

Your legs have turned to stone as you slept, and yet they ache to the bone. Your kneecaps feel as if they been bruised by a hammer and your feet feel as if a spike had been pounded through fiber and bone.

A primitive sort of fear crackles through your body, dancing like exposed electrical wires. What if this is it, the revelation in real time of the ever present lurking fear, the fear that you will wake up and find you are unable to walk?

You pull your legs up. You place your feet on the floor. They may as well be bricks or doorstops or potatoes. You slap your skin, massage your calves. Then you get up quickly, lurching toward the nearest handhold—the table, the coat rack, the unsuspecting Labrador.

And you walk—not well—but you put one foot in front of the other, weaving like a child’s sand-filled punching bag, and you walk.

*

What is it? What is it really? What is it clinically—this thing that turns flesh and blood to stone, that tunnels through the brain like a worm in an apple, that reduces nerve fibers to squirrel chewed telephone wires, feet to turnips, toes and fingers to rubber erasers, hands to ham hocks?

In brief, omitting the medical and anatomical gobbledygook as far as possible, multiple sclerosis is a neurological disorder, one of these increasingly popular autoimmune diseases wherein the enemy has been found and turns out to be us. The immune system, originally designed to destroy foreign invaders such as bacteria and viruses, suddenly has the notion that ones own cells are invaders, and so sets out to destroy them. It is all perfectly wonderful, a completely conceived and executed science fiction!

How fearfully and wonderfully I am made,” said David.

Man, he didn’t know the half of it.

Now, above I have used the term originally designed in reference to a corporeal system of the body, and this, I suppose, betrays a prejudice in as far as it presumes the existence of a design, and therefore of a designer.

How very many things there are that we cannot even begin to talk about without agreeing first, in the most essential way, on the existence of a creator. In order to talk about what has gone wrong, we must begin with what is supposed to be right. Without this—the presumption of design and intent, and even more, the absolute faith in the same—there is no disease, no malfunction, no disorder, because there is no order in the first place.

One of the things I love most about multiple sclerosis is how it crosses so readily back and forth from science to philosophy to faith to humor to all things the lie in between.

How shall we know what is right if there is nothing wrong?

And what can be more perfectly wrong than a process wherein the parts of the host seek to destroy the host itself? It is apocalypse and Armageddon. No one comes out alive.

Untying the Balinese Knot

“Divorce,” as Felix Unger said in the 1960’s movie The Odd Couple, “is a terrible thing.”

“Oh! It can be,” was the punch line rejoinder, “if you haven’t the right solicitor.”

There is always a punch line.

From Robin Williams we have: “Ah yes, divorce . . . from the Latin word meaning to rip out a man’s genitals through his wallet.” Zsa Zsa Gabor said “I’m an excellent housekeeper. Every time I get a divorce, I keep the house.” She said as well that getting divorced because you don’t love a man is almost as silly as getting married because you do.

The quotes available are almost endless (just look it up on Google); and new quotes will be added every day, from here to eternity, as new voices arise as witnesses to mankind’s second most popular pursuit -- silly people that we are.

So my friend, Mick, is getting divorced. A prince among men, an Englishman from the midlands, a man acquainted with both success and failure in this long life, Mick will soon race at least one marriage and divorce ahead of me. Life ends and begins again. You get better at it every time, or at least less surprised. You learn the ropes. You cut your losses and move on. It’s sad, isn’t it? Almost as sad as marriage itself.

I’m being facetious, of course. I’m just feeling cranky because I’m about to lose my best friend. Never mind the marriage and the Balinese wife, who never liked me anyway because I smoke and smoking is a nasty, disgusting habit. The result, in purely careless and self-absorbed terms, is that I must soon find myself divested of a chunk of life in Bali as I have known it over the last two years. Mickey the chunk. He’s going back to England, has already booked the flight, after five years of life in Bali (most of which, as he now claims, was spent stuck in traffic).

We are neighbours, Mick and I, out in the Biaung boonies, and every morning he will walk down to my house and sit, unless it’s “pissing down rain, “ at the table in the yard where I generally do my writing, to visit for a bit -- always a welcome interruption -- over a nasty disgusting cigarette or two -- a modest bit of luxury disallowed at home. I think that it was ultimately this sort of disallowance that drove the marriage to dissolution -- not just of the occasional “fag,” as he would put it, but of . . . well, of just about everything that is truly rewarding -- tobacco, alcohol, the internet, Facebook, Farmville, loafing in a lazy beach café, flirtations with strange women. You know what I mean.

But I grow facetious again. It would be truer to say that Mick, for most of his adult life, had been a man in charge of himself, married or not. He was a boss at work, managed other people, made the decisions, determined outcomes. And so had life been for his wife as well. Two people, both in charge. It’s the most common ingredient in explosive marital outcomes. I suppose they should have known better. But perhaps one, or both, had played a part for a time -- during that period in which silliness results in marriage. Perhaps façade had altered the plain visage of fact and led in turn to blind roads and false hopes.

It has often been said, within my hearing anyway, that Indonesian women are difficult to live with. They are bossy, controlling, hard-hearted, sharp-tongue, greedy; sweet on the outside, bitter within; stubborn, pompous, intolerant, unkind, argumentative, hot-blooded And so on. They are never wrong; and if proven wrong, it must have been you who had misunderstood from the beginning. I make no sweeping judgment of the Indonesian woman. Being married to one, I need to be careful. I will simply be swift to note that my own wife, a perfect sweetheart, must surely be an exception.

Mickey came here for life, and that lasted five years. He’s on his way home now, back to the old country and the familiarity of friends, back to one language, one culture, one convention, leaving in Bali only memories and anecdotes: Mick, who once stormed into an Apotek demanding to see their selection of condoms along with demonstrations of the same; Mick, who asked the middle-aged woman on the beach, a purveyor of younger women’s flesh, whether she could find him one without teeth (for whom he would pay a possible fortune); Mick, the proverbial bull in a China shop; Mick who would try to sell watches to watch hawkers and rides to taxi drivers, the consummate rib-jabber and leg puller. Straight talking, hip-shooting, no bullshit Mick -- reliable, trustworthy, “sound as a pound” Mick, who would give you the shirt off his back, repair your stove, replace your front door, fix your motorbike, install your tap, re-route your electric, watch your dog -- a Jack of all trades, a man for all seasons, a world traveller who nonetheless never once left home -- both a simple and a complicated man, and therefore not unlike the rest of us; a product of his time and culture and country, as much as his wife has been of hers.

Bloody Mick. I’m gonna miss ya, Matey. Cheers.

One Man's Garbage is Another Man's Island

My wife tends to get restless on weekends. It’s a spill-over from the restlessness that besets her on weekdays, a rising of energy that is usually expended at work, but now suddenly finds itself with nowhere to go, like water at a boil or un-slurped foam on a newly poured beer. She tends to spill all over the house.

She has no idea of how to relax, you see. In fact, she considers relaxation a waste of time. This can make for difficult days in our marriage, for I just happen to be an expert at relaxing. It’s something that comes to me quite naturally, quite without effort. You might say that I’m a sort of idiot-savant where relaxing is concerned. I cannot explain how it is done, and I certainly can’t teach it. It’s just there. Some people, inexplicably talented, can sit down at the piano and play Liszt and Rachmaninoff (and yet remain unable to tie their own shoelaces). Some people can glance at a jar of toothpicks and tell you how many are within. Some people memorize dictionaries. In the same way, I find in myself a certain genius for doing nothing, and loving it. I am the Rain Man of relaxation.

But she must move -- either that or reach a critical state of elemental imbalance, which in turn can be hazardous to anyone within 50 feet or so.

I remember reading a book once. It was part of the course material for a class at church. How to understand your mate and succeed in marriage. This was sometime during my second marriage. According to the book, men are naturally inclined toward “fixing” a problem, whereas women mean only to “state” the problem -- to get it out in the open, to air their feelings, to express frustrations and grievances. They’re not necessarily looking for a fix. Certainly not from their husbands anyway. Given, therefore, the true dynamics involved, an understanding man may learn a few key phrases. “What the hell do you want me to do about it?” is not one of them. Rather we should say (and softly so, with a meeting of eyes): I understand what you’re saying,” or “What I hear you saying to me is this--” (at which point you should tack on the words she just finished saying (which necessitates, of course, remembering the same).

“We never go anywhere,” my wife says. “All you want to do is drink coffee and read books and . . . drink coffee.”

To me, this sounds like a full enough life. But I do understand what she’s getting at, so I ask her where she wants to go.

“Anywhere,” she answers.

“I hear what you’re saying,“ I answer (with feeling), but can you narrow it down just a bit? Anywhere is kind of . . . big.”

“How about Singapore?” she says. “How about New York City?”

In the end we decide upon the Mangrove Forest, just up the Bypass near Sarangan. Poverty is a bitch. You’ve got to cut corners. Sharp ones at that.

Just before the entry to the Mangrove Forest my wife noticed a mountain of garbage off to the left, and shoved my shoulder so that I could swerve and see it too. “Mountain” is really too small a word. It was magnificent, like nothing I had seen before. This mountain, this pre-eminence, looms majestically over the forest itself and, as we discovered, contributes liberally to the streams that wind through the park.

Upon arrival to the park proper, we found that visitors must pay to walk the mangrove path. Moreover, we found that Bules must pay three times the price for Indonesians. This seemed less than fair -- and yet miraculous in its own way, in that it, like the mountain of garbage, was ridiculous, and therefore something fresh and new where the expectations of an American are concerned. Imagine if we in America tried to charge three times the white price for brown people, for instance. Is it not astonishing? What country is this in which I now live? What planet?

After negotiating with the woman in the guard booth, wherein I was careful to express a keen understanding and appreciation of what she was saying -- repeating her words back for full effect -- it was concluded that I should either pay the Bule price or sit outside the park entrance while my wife and her camera went in.

And so it was. I cannot say that she was delighted by the sights, but the walk did serve to expend some energy, and later on at home she laid down for a nap.

As for myself, I talked to a woman in the warung across the road, I drank a strawberry Fanta, I smoked cigarettes and wandered in lazy circles. Lastly I stood on the small bridge that spans the river oozing into the mangrove forest. As I stood there, gazing down at the sluggish waters, I saw all manner of things admitted, where I myself had been disallowed -- paper cups and wrappers, plastic ware, Styrofoam, dresser drawers, diapers, someone’s shirt and bra, bike tires -- all the world in one stream, a perfectly miserable sort of microcosm. I could not help but be amazed. How much more might I have seen, I wondered, had I swallowed my parsimony and paid the fee?

Singapore and the Big Apple may have wonders a-many; but there’s nothing, I think, to equal Bali’s own brand.

Skirting the Issue of Skirts

Given a perverse desire among the young women of Indonesia to experience rape at some point in life, as obviated by a recalcitrant insistence on wearing short skirts, and thereby rendering their persons generally rape-able, religious affairs minister Suryadharma Ali has come to the rescue of the weaker sex by issuing a call for a law to prohibit such enticing abbreviations, including this under the anti-pornography initiative recently launched by the President. It is clearly these two problems -- pornography and miniskirts -- that are causing Indonesians far and wide to suffer -- oh, as well as tobacco use -- and so the government and its ministers have taken bold steps to address the issues, leaving corruption, graft and poverty for another day. First things first, right?

This is the same Suryadharma Ali, by the way, who found no need for his ministry to become involved in religious strife between Muslims and Christians in Bogor, Java, in regard to the closedown of the Yasmin church. The matter did not fall under criterion of a religious concern. Apparently miniskirts do.

“We think that there should be a general criteria on how women should dress,” Suryadharma said. “For example, women’s skirts should pass their knees.” When questioned about considerations of cultural dress on some of the islands (Bali, for instance), or about the remainder of a woman’s attire apart from that which addresses the legs, Ali was unsure, but continued to insist on the knees as somehow particularly inappropriate. They simply must be covered. A consensus must be reached, he agreed, and much discussion must ensue regarding the various parts of a woman’s body and how inappropriate one is compared to another, but ultimately we know pornography when we see it (as represented by a knee, for instance). Or at least we men do. Women seem to be clueless overall, enslaved as they are by the naughtiness of the infidel fashion world, and therefore helpless to desist from causing men to pornographate (to coin a term). As always, they are in need our help and assistance (otherwise known as control).

But this all goes beyond the knee, and I’m sure Pak Ali is aware of the same. What about the rest of those lovely parts? How sinful is one compared to another? If the skirt henceforth is to extend below the knee, what about the rest of the leg left exposed? What about the ankle -- a particularly juicy part in Victorian times? What about the calf? What about the foot? Surely the minister has heard of the foot fetish. Shall we apply galoshes where the hem yet falls short? And then you have the whole question of the upper torso - the waist, the shoulders, the neck, the head. And what to do about those two prominences smack dab in the middle of that upper portion (which, to my mind anyway, render the mere knee rather poor and bony).

I’ve done some thinking on the subject. In fact it has kept me up at night, as perhaps it has done with the Minister as well. I’m thinking that hoop skirts and bloomers might be a partial fix. Nobody in a hoop skirt ever got raped, right? But here again, you still have the top half to consider, and those blasted lumps which practically shout for the attention of the otherwise unwilling and outraged man. Surely these are worse than knees! What to do? Can a lampshade be fashioned to solve the problem? Or perhaps a brown paper bag would do, the 12 gallon kind we used back home for the collection of garden and yard refuse. The NASA spacesuit is another thought, but this would likely prove less than humane in Indonesia’s sweltering heat.

And then one day the solution came on its own. I was riding my motorbike on the Bypass at the time, doing my best to ignore all the busoms and knees, when I noted a flatbed truck on my right, and the bed stacked in rows of three with large, pink, naked pigs. Each pig was individually wrapped in a tubular cage of wicker, such that all one could see, with any definition, was the snout at one end and the squiggly tail at the other. My initial thought was that this must be what weiner wraps look like before they are cooked down and served for breakfast; but then it struck me that such cages could be just as easily applied to females of the human variety, with maybe some colour added and a ribbon thrown in here and there. It suit’s the problem, it supplies a solution; and moreover it makes a fitting statement of its own -- for just as swine have long been taken to the market for slaughter, so have women to the various alters and courts of man-made hypocrisy and lies.

The Sounds of Silence

Nyepi went by quietly at my house, and quickly too somehow. It lacked the traditional tedium that had always attended it in the past, that sense of hours elongated to the point of rending like a string of overwhelmed taffy. It lacked the customary numbness that assails the mind in the face of excessive sensory deprivation, the limpness that besets the famished soul. Something was missing from Nyepi. It was all too easy, all too comfortable, all too feasible. I had hardly time to suffer before the day was done.

What happened? People happened. Progress happened, change, the march of time. The flesh became weak and the spirit was not willing, and tradition sputtered, coughed and slumped to the shoulder of the busy, impatient world. Hardly had the soundless morning begun its trance-like stroll through the blinded streets when children were seen dashing alongside, meeting together midway at the Banjar, where pecalang (Hindu police) were found talking and gambling at cards. “Shhh, be quiet,“ they said, and played.

Quiet the children were, for an hour or so, and then came a shout, laughter, a screech. Bicycles were brought from behind closed gates and the sombre day was pierced with motion. By mid afternoon the adults had peeked out too, first to the door, then to the porch, then to the gravel siding by the gate. They smiled sheepishly, cocked heads toward the children, raised their arms to signal impotence. Well, kids will be kids, right? What are ya gonna do? I might have suggested a chemical preparation, or more simply one of those hammers with the rubber heads (so as to avoid obvious dents), but that would probably have been at odds with the peaceful character of the day.

In the evening there was a party at one end of the block, while at the other a forgetful squad of pecalang grew loud and overly celebratory. .

It seems that Nyepi is not what it used to be -- and the sad thing is that this should be the case after only three times experiencing the event. My first Nyepi, in the year 2010, seemed suitably austere. We lived in Sanur at that time, in a home stay, as we had only arrived in Bali one month before. My wife had returned to America (to avoid Nyepi, I think), and so my son and I were going it alone -- strangers in a strange land, unacquainted with the customs but prepared to learn and comply. It was quiet indeed, not a light was lit, and we had no TV to try to cheat the day with. I read books, and prayed, and rested, and waited, while my son tossed about on the bed, sighed greatly, shed a few tears, cursed Indonesia, and watched a Mr. Bean DVD twelve times through. Out of window curtains, parted ever so demurely, we saw a pecalang pass on patrol, and it was deep at night before I dared poke my head out the door to gaze at the dazzling soundless stars.

By the following year we had moved to a house, a small two-bedroom place near Sindhu market -- and already Nyepi had changed. Our maid, a Muslim, did laundry on the back patio; my son had somehow got the TV to work (a negative accomplishment on any day, in my mind); and my wife took the opportunity to clean corners and nooks that had never seen the light of day -- employing me for the same purpose, of course. What else, after all, did I mean to do? Meditate? Neighbours could be seen outdoors as well, busy at similarly dreary pursuits. It was quiet, but not so quiet as before, and the TV marked the hours and nudged them along, plodding relentlessly through the programming schedule for the day.

By the third year, as I’ve said, the children were let loose. And a rumour had spread that Indovision could be tricked, despite its vow to discontinue all service, by leaving the control unit on one channel the night before. And tricked it was. As long as you did not change the channel, you could watch all day and all night during Nyepi, a poverty in programming seeming preferable to peace. Front gates squeaked and adults stole out to the street and gathered gleefully in places where like-minded disdain was being shown.

I’m no huge fan of Nyepi, as I guess you can tell. Too much of meditation and introspection would likely merely cause me to detest myself, which is something I try to avoid in my old age. Nonetheless, I hate to see the sanctity of a tradition diluted. As a matter of principal, you know? And so I find myself strangely outraged.

“Look, there goes a kid on a bike!” I say. “There goes a man, walking down the street. Now he’s coming back. Now he’s whistling!”

“Good Lord, get a life,” my wife says. “Or go join the pecalang.”

“But they’re chattering, and laughing, and playing cards.”

“So go make a citizen’s arrest.”

Nyepi itself, ideally anyway, is composed of four equal parts, called abstinences. First there is Amati Geni, the abstaining from lighting any fire or turning on electricity. Well, so much for that one. Next is Amati Karya, the abstinence from working. This is something from which I’m happy to abstain any day of the year, so it is no more difficult for me on Nyepi than on any other day. Amati Lelungan is the avoidance of going outside the house -- and I have to admit that’s a hard one, for while one may himself be silent, he wants, quite naturally, to experience the full import of the circumstance, made amazing by unanimity, by stepping out to the darkness to hear how all the rest of nothing really sounds, and to marvel at the disappearance of his own hands and feet in the rarity of a cloak of pure night.

Lastly there is Amati Lelangan, which is the abstinence from indulging in any pleasurable activities. Whoops. Who knew? Our ignorance of this fourth abstinence had been complete. We anticipate twins (or even triplets) by Christmas.