Sunday, November 30, 2008

I Am A Tooth

Tooth pain! Aaaaagggggghhhhhhh!

Had to have another tooth pulled, and it hurts like a son of a bitch. I'm wondering if this is partly an inappropriate, exaggerated response to pain, a la MS. I know I've gotten some pretty exaggerated feelings from other painful stimuli, or if not exaggerated, then just plain weird. Like the time the fronts of my calves were stinging whenever they would touch something. Or the time it kept feeling like I had stuck my fingers in a wall socket. Crazy stuff.

Anyway, I wish I had been born with upper and lower plates in. My teeth have been nothing but a misery all my life.

If you ask me, God got the whole tooth business dead wrong. There simply had to have been a better way. Why all these teeth connected directly to nerves?

I mean, He was good, but if you ask me, He got a few other things wrong too--things that I could have done better. Monthly menstruation, for instance, and its byproduct of PMS. Why monthly? Even animals don't do it monthly. Why not once a year? I know there is a biological mechanism involved, but still it seems excessive.

And then there are the toenails that grow into the toes. Why have toenails at all? I suppose they are nice enough on a young woman, painted pink or red--but when they turn yellow and thick as nickels, it's just not cool, nor fashionable either. And anyway, if you were going to have nails, why have them all the way down on the toes and therefore so difficult to reach with the clippers? Wouldn't it be more manageable if the toenails were on our knuckles or elbows?

But enough of this. Blame it on my tooth. I cannot think. I might as well be a tooth, for this throbbing has conquered the very center of my consciousness.

Saturday, November 29, 2008

Real Turkey and Pumpkin Pie

Yesterday afternoon I had my first normal Thanksgiving meal in about two years. I mean one that had turkey and dressing, mashed potatoes and gravy, green beans, biscuits, cranberry sauce and pumpkin pie!

You see, I am married to an Indonesian woman. Pretty much all our friends are Indonesian. All our relatives are Indonesian. My family has long since passed away, and I'm so damn disagreeable that I really have no personal friends to speak of. For this reason, the usual Thanksgiving fare would consist of rice and noodles, and maybe soup with fish balls.

It's just not the same, is it?

But in this case, a husband of one of the Indonesian girls came through with the traditional fare. And had the Cowboys/Seahawks game on the TV to boot!

I ate like a pig. I ate some for my mother, for my father, for my brother, for my aunts and uncles. I even ate some for my grandmothers and grandfathers, who had died before I was even born.

Happy Holidays!

Friday, November 28, 2008


Ah Thanksgiving! And a healthy feast. I think I'll start out with the finger foods--provigil, baclofen and such, then move on to the more substansive oils--Nona and flaxseed, a big tumbler of fish oil, each with a generous pinch of the season, cloves and cinnamon and nutmeg. For the main event I will personally kill the turkey with my new cane (the one with the brass handle), and then let someone else deal with what's left (as I don't 'much care for turkey anyway). Full to bursting with vitamins and nutrients, I will nonetheless force down the ice cream and pie for dessert.

Monday, November 24, 2008

To Have and Have Not

Rich people are worthless. The greater their worth in monetary terms, the more useless they are in practical terms.

Now don’t get me wrong. We love our exchange student, Mamdouh—but the fact is, he’s a rich kid living on family money and has not a clue that there are things we common people must do to make our way in life. For, you see, back home he has people to do these things for him. The little people.

Here in Portland, Oregon, I and my wife fill that role. We are the little people. The elves. The fairies.

I’m thinking, for instance, of this shit-load of wood we have sitting in the driveway. The wood that I’ve been moving, load by load, all day long and stacking in the back of the yard. The wood that we will be heating the house with this winter. In short, the wood, the fire, and the house that will keep Mamdouh warm and cozy.

Has he carried even as much as one stick? No siree. They have people over in Saudi Arabia that do these things. They are invisible, these people, and these jobs just get done. It’s magic.

No, it’s money.

Okay, so he’s starting to irritate me. Every Friday and Saturday he stays out all night long, then comes here and sleeps all day. I’m beginning to think he’s a vampire. Or maybe he and his friends are plotting the next Jihad. Or maybe it’s both. I just wish they’d start by blowing up this pile of wood. That’ll move it.

I suppose I’m just envious. How nice it would be to just lounge and talk on the phone while the elements serving as the basis for your continued existence take place all around you as if by magic.

Stupid Is As Stupid Does

There's a difference--a really big difference, actually--between having done something stupid, and having purposely done something stupid. I seem to have lived much of my life, made many of my decisions, according to the latter mode.

Why is this, I wonder now, and rather stupidly so, as of course time has moved far beyond any window of opportunity that might ever had existed for retraction or repair. Is there some deeply ingrained inclination, an unconscious rebellion against good reason, that has goaded me in every critical moment irrepressibly toward the sphere of things which are universally inadvisable?

Perhaps the rebellion has been against my father. He, after all, had often either called me stupid outright, or at least implied the same. Did I decide, again in that deep in the soul storehouse of knee-jerk inclinations, to go ahead and show him how stupid I could really be?

Am I therefore a success, albeit a stupid success?

Or maybe my toxic reaction against good sense is found in simple stubbornness for its own sake, a will to break the mould no matter what the mould might be, no matter how proper, prudent, fitting, needful.

If they ask for your coat, give them your cloak as well. If they compell you to go one mile, go yet another.

Riduculous, is it not? Yes, it is.

Stupid is as stupid does.

Saturday, November 22, 2008

Burn Down the Mission

Well, it’s wood time again. A whole truckload of it coming in. And it just so happens that I feel lousy. Lousier than usual. That little attack I had yesterday has settled into my legs, so that my legs themselves feel rather like wood. Like two boards with no hinges at the knees or hips. Even Lego characters walk better.

I’m trying to figure this out, financial-wise . . . if we buy a $250 cord of wood, add in the sweat and pain required to move it to the back of the yard (as I’ve mentioned before, everything must go to the back of the yard, be it wood, dirt, gravel, or rocks), then add also the effort required to chop the wood into burnable sticks . . . how much do we end up saving on heating gas?

I suppose this could be answered easily enough if I had any idea what we spend on the heating bill. But I don’t.

It will have, therefore, to remain a matter of mystery and faith.

Ah, but what price can you put on the warm and fuzzy feeling of pine and cedar crackling in the fireplace, on the creation of heat by ones own hands, the dancing flames casting flickering shadows on the walls, the smoke which leaks out into the air and stuffs up your nostrils so badly that you end up addicted to Afrin? What price for the heat which rises volcanically to the top floor, where I work, so that I have to strip off my outer clothing as if it were mid afternoon in August, or the soot than cannot be cleansed from the hands, the pitch that causes ones fingers to stick together.

What price can you put on the challenge of igniting chunks of wood, damp from being in the back of the yard, which stubbornly refuse to burn, despite every effort at encouragement short of using a flame thrower? What price can you put on a return to simplicity, to bygone ways and customs, to living as the pioneers lived. Or the cave men?

You cannot turn off a fire, by the way. You cannot turn it up, you cannot turn it down. It is simply there. It generates whatever heat it will—be that little, some, or extreme to the point of seeming downright dangerous. Once the match is lit, the rest is left to the whim of the flames.

Monday, November 17, 2008

Huns and Visigoths

Time was when the citizens of Rome could sit back on their chaise lounges, sip mint juleps and enjoy a detached sort of discussion about those Huns in the hinterlands, stirring up trouble again. Faraway fires, rumors of war. What a pity for those distant victims of rebellion. We'll have to send another legion.

Ah, but in Rome, all is well.

But by and by troubles start creeping in a little too close for comfort. An element of real alarm enters into the realm of mere commentary. Did you hear what happened to the 19th Legion? Did you hear that the Visigoths had crossed the border?

You have had your own troubles with attacks of multiple sclerosis. You know that it is serious business. But then many of the symptoms have melted away. You feel much better. You can deal with your personal level of disability. Sure, there are troubles on the frontiers, looming storms, distant thunder--but the legions are out, and the outposts fortified.

You are taking your interferon. You are taking your vitamin D and your fish oil and your flaxseed oil. You have your baclofen and your provigil, and your gabapentin. And you are drinking water. Lots and lots of water. Because hydration is the key to wellness.

Next thing you know, a good friend is in the hospital. She had been doing well. She had been feeling good. But that was yesterday. Today she is hooked up to a gallon bag of steroids and normal saline. It seems that the rebelling barbarians were never as far distant as you imagined them to be.

So guess what--your safety was, is, and will always be an illusion. Since the rise of their violent empire, the barbarian hoards had never been still, but had only waited, enigmatic, keeping counsel of their own. They had only hidden in the cloak of rumor that you yourself had applied.

And in the end even vigilance is stripped of its disguise. It had always been but wishful thinking. The city will be sacked, set aflame. It is not a question of if, but when.

God bless any and all of you who have suffered the latest invasion. Get well soon.

MSFLT--Coming Soon!

I find myself increasingly locked out of my own life by passwords that I cannot remember. These are not exotic sequences of code, but rather simple, easy to remember sets of letters and/or numbers--like my name or birth date.

There are some user names, some passwords, that require letters and at least one number. There are some that do not. But which is which? For me, logging into the Internet, or LiveJournal, or my bank account, or my own website, is a matter of trial and error. I keep trying until I get in, or until an administrative message pops up and tells me I have tried too many times.

Try again later.

I have therefore determined that a need exists for the MS-Friendly Laptop and Internet (MSFLT). This will be a system devoted to people with MS in particular, but also handy for any person suffering from cognitive, spatial, coordination and/or memory challenges.

First off, no user name or password will be required of each individual user. In fact, these will not be allowed. Attempts to invent a personal user name or private password will result in a critical system failure, and the user will be referred to a website marketing refurbished IBM typewriters and transistor radios--the one to be used for preparing documents, the other for surfing.

As with my prototype X-Box for MS (MSX-Box), these consoles (i.e. laptops) will be roughly three times the size of your standard Dell or Compaq (so just a bit shorter than an upright piano), in order that the keys may also be three times the normal size.

Logging onto the Internet will require the depression of only one key, labeled MSI. Again, no password, no user name. Upon arriving at the MSFLT Home Screen, one will again merely type in his desired destination (in the large box titled Where The Fuck Do You Want To Go?), and voila! The specially programmed MSFLT system will find your page, update your account, protect your identity, and order a pizza--all with just one keystroke!

Say goodbye to frustration, goodbye to pockets stuffed with yellow sticky notes, goodbye to eyestrain and migraines. MSFLT IS HERE! (or on the drawing board, anyway).

Thursday, November 13, 2008

Sit! Eat! Go Away!

I find that my grasp of Bahasa Indonesia, after two years of study, is quite satisfactory now, as long as I limit my practice of the language to conversation with the dogs, or with myself, which may, in any case, amount to the same thing.

The demands in this manner are minimal. Sit! Eat! Go away!

Know what I mean?

My level of exertise is also quite impressive if I happen to be talking to Mamdouh--who does not speak Indonesian, nor very much of English either, for that matter. In other words, Indonesian may almost just as well be English.

Duduk! Makan! Pergi sana! It's the same.

Speaking with my 8 year old son is a little more demanding. Although he does not speak Indonesian, he has heard it being spoken for the last 8 years, by his mother, grandfather and grandmother in particular, and so he instinctively knows the difference between the actual language and simple jibberish.

Nothing like having an 8 year old correct you regarding a language he does not speak.

Therefore, I stick with what I know: Duduk! Makan! Pergi sana! Sit, eat, go away.

It works on him just as well as on the dogs, and that, my friends, is communication!

Wednesday, November 12, 2008

All Considered, Zombies Are Worse Off

It takes but a little to result in a lot. I find this to be especially true where MS symptoms are concerned. As long as I maintain a general composure of vegetation, I do pretty well. When called upon to exert myself however, in mind or in body, I experience an almost immediate awakening and activation of disabilities that had been merely at rest.

Why are zombies so slow? Maybe because they have MS in addition to all their other problems. Being dead, for instance, is bound to slow you down a bit. MS just makes being dead a little worse.

I walk slowly. People think that I'm really laid back. The truth is my body is just conserving energy that will soon need to be applied to one task or another.

I cogitate deliberately. I stare into space, eyes fixed in apparent deep rumination, chin in hand, statue like. But I'm not really thinking at all. I am merely trying to think. There is no profundity being discovered unless trying to remember where I parked my car can be called profound.

This morning I had to carry my keyboard upstairs and then rearrange some pieces of furniture downstairs, and by the time these simple tasks had been accomplished (perhaps 15 minutes or so) my legs were aching and wobbly, my breath short, my arms sore, my face hot. It felt like having just finished an interlude of rough sex, only without the sex part.

And so now I've slumped back into the vegetative state, here at Starbucks, I and my cappuccino. We're having company for lunch today, and I am doing the cooking. Get ready body, here it comes!

Tuesday, November 11, 2008


One of the hidden costs in hosting a foreign exchange student is for toilet paper. Actually, it's not all that well hidden. One notices this sort of thing. I am not yet sure where exactly all this toilet paper is going. I mean, I am perfectly aware of the natural purpose toward which it is to be most generally applied, yet I am not fully convinced that quite this much could be disappearing toward the satisfaction of this purpose alone.

Compounding the mystery is that there appears to be no trace of the route it has taken in the process of this rapid consumption. I have discovered none of it in other rooms of the house, nor in the waste baskets, nor have I seen even so much as a square of it trailing behind anyone's shoes.

My dog used to eat the toilet paper--fresh off the roll, thankfully--but he broke this habit long ago, having traded it in for the dirty socks that he gets from the laundry room.

So it's not the dog's fault. For once.

Aside from that, however, Mamdouh makes himself relatively cost-free. He does not eat, for instance, anything other than potato chips as far as I can tell, and these he buys for himself. A while back he bought a package of cookies for the family that no one likes, and so these he ate as well. He does not even drink our Folgers Instant Coffee. He is perhaps too accustomed to the real stuff back in his own country.

It turns out that Mamdouh's government, or his embassy, or educational sponsor--anyway whomever his handlers are--want him to transfer his studies to Seattle. This because there is a larger Saudi community there. But hold on a minute . . . I thought the point of foreign study was to mix and mingle with foreigners--learn their culture, learn their language by being thrust among them without escape.

I do not understand the basis of their desire to move him. And aside from that, we love him, and we don't want him to go. And he doesn't want to go either.

Perhaps we can find a way of granting him asylum. We'll see.

Monday, November 10, 2008

A Spoonful of Sugar Substitute

Where did we get the idea that all natural ingredients were going to be good for us? Where did it start? Made only from natural ingredients. Honestly, the unnatural ones tasted good enough to me. When did this mania for vitamins and oils and minerals come about?

I suppose it was natural for this to make its way into the realm of MS treatment as well. The idea appears to be that the natural stuff has been naturally intended by . . . well, by nature, as the balm for all that ails

Fish oil squeezed fresh from the fish (preferably while still alive).

Flaxseed oil, natural vitamin E oil, oil of mango.

If it's oil, it's oil right with me!

The other day my stepson had a headache. I went to get him an aspirin and my wife explained that she had already given him a vitamin C.

Vitamin C?

If it's a vitamin it must be good. Vitamins are natural. Aspirin comes from . . . well, God knows where.

Have you ever really noticed the people you see in health food stores? To my eye there seems to be a yellow cast to their skin. To put it bluntly, they look rather jaundiced. Maybe it's just me, or maybe it's the particular stores I've been through, but I have honestly not seen gathered together anywhere else such a sickly looking community of human beings. Well, except for the time I visited the infectious diseases ward, that is.

It's getting difficult even to buy normal cereal anymore. Things that used to be delicious--Frosted Flakes, Sugar Smacks, Cookie Crisp--have been one by another salted and infiltrated with healthy stuff--whole grains and fibers, natural honey instead of sugar, all the daily vitamins you need in one teaspoon! Mmm . . . gritty.

It begins to be clear that there has been a conspiracy afoot--but we are on to it now, we are becoming wise. No more will we subject ourselves, and our health, to suffering at the hands of these purveyors of unnatural foodstuffs. I would sooner drink a quart of canola oil!

Language Barrier

A bit more on mean spirited women. In particular, a 5 foot high Indonesian of the aforementioned type. In short (no pun intended), my wife.

It seems that quite aside from the reckless act of entering into marriage of any sort (for by the third time around I should surely have known better), I had also failed to fully appreciate a multitude of peculiar barriers specific to the choice of this particular mate.

First off, she is very much younger than I (24 years younger, to be exact). Young people do not think in the same way as older people. I am not quite sure, frankly, whether they really think, properly speaking, at all.

Secondly, there is the culture barrier, Asian to American. Just look at the troubles we have had in the past. Troubles with Japan, troubles with Vietnam, troubles with Korea. And lets not forget China. Given this troublesome sort of history, what else should I have expected?

Most significant of all barriers, however, is the language barrier. My wife speaks and understands spoken English well enough; yet, when she becomes angry, the basic constructs, the building blocks if you will, of shared intent and comprehension begin to fall onto and over one another, scattering at our feet as if spilled from a child’s toy box. We end up in a mess of garbled delivery and fumbled reception.

One mistake, one failure in clarity, leads to another, and very quickly so. Pretty soon the sky is falling. It’s a given. Everyone knows it. Chicken Little said it was so.

For two days we argued; or rather, we got the actual arguing done with early on, and then simmered in mutual silence, replaying our own versions of what had actually been said—which were both, of course, quite different from what the oft wanted yet never available voice recording would have revealed.

It so happened then that in the middle of the night, I on the sofa, she in our bed, I awoke to a sudden grasp of the essential miscommunication that lay behind the entire kerfuffle. Like a fly in the soup, a bug in the program, it had compromised our discussion at its very core. Poor grammar can be deadly, believe me. Sarcasm, especially, needs an exactitude that may be beyond the person who is speaking English as a second language.

Now I’m not saying, still, that she’s not a mean spirited woman. Because she is. The truth is, we are all pretty mean spirited at heart, all natural men and women, born to the bondage of all the things that are the least honorable in life. It takes an effort to break out. It takes a will, a sacrifice, and sometimes a dream.

I suppose that in conclusion I should mention multiple sclerosis. It is, after all, what this journal is supposed to be largely devoted to. And so I will say that arguing, that fighting, that marital troubles are not good for the person who has multiple sclerosis. Or at least in my own case. I find very quickly that my familiar baseline symptoms begin to grow significantly worse. The pain that is always present in my legs intensifies and spreads, locks itself into my knees, invades by upper thighs and groin; shoulders and neck, already tense, begin to toy with the idea of total paralysis; and my confusion becomes itself confused.

I find quickly enough that I have slipped again toward thinking I’m a normal person—that I can argue and be hateful and insulting and hurtful just as if I were perfectly healthy and able.

It’s not worth the price. It’s not worth risking the consequences. All things must be put in order again, and the whole picture allowed to fill the screen. Nothing, after all, is all that damned important. Nothing but love, and peace, that is.

Sunday, November 9, 2008

Mean Spirited Women

My wife is a mean spirited woman. I say it quite dispassionately. My former wives were mean spirited women too, so I’m not really singling her out.

While I was with my first wife, I was still a young man, and so was inclined to be rather mean spirited myself. Back then I fought fire with fire. Things ended up getting burned. Never build your house on a bed of coals.

By the time I married my second wife I had begun to develop a philosophy of compassion and self-sacrifice. It was a philosophy heavily influenced by Jesus Christ. I embraced the notion that love, if shown with patience and as far as possible without condition, would be sufficient to defeat all evils of all sorts. I was wrong. Or perhaps the love itself did succeed, and it was just the marriage that failed.

Two years into the third time around I simply admit to being at a loss. More and more I am persuaded that just getting out and cutting losses would be the most prudent course. But when has the course of love ever been given to taking the course of prudence?

One thing that has always left me dumbfounded is how the women I have known have seemed to believe that they could say the most outrageously unkind things, make the most damning, hateful statements, yet later be able to pretend that it never happened!

I think now of employing the same sort of harshness in a counterattack, and yet I cannot bear the thought, it makes me cringe to imagine it. Why would I want to willfully inflict pain, especially at the cost of my own integrity, and at the cost of our strength and trust together? I don’t know. Why would they? Why do they?

In the end I find myself alone on the battlefield, with only my own pride to face. And I know not what is best anymore—to bury pride, or to embrace it. I have, after all, already tried both, and neither has made so much as a dint in the woman’s steely armor.

I guess the good thing about being older, and having already gone through the mill a few times, is that this sort of stuff is not the end of the world, as it used to seem. It’s just another mile on the road, another day. You begin to see life as a process of a general failure to thrive. You are no longer surprised to find that love is not pure, or often even very loving. What is most precious, and what has been most coveted, even from the earliest day, was a dream all along—and that, at least, has not changed.

Perfection does not reflect itself perfectly, for a splash as occurred in consciousness, way, way back in the beginning. Now there are ripples, now the waters move and are dotted with rain or nudged by the wind. What is the answer but to look up as often as you can remember to, to avert your heart from a world that is in a constant wavering toward chaos, and fix again upon the dream that is eternal?

Saturday, November 8, 2008

Love and Reformation

One thing I remember most about my brother is how alive he was just before he died. I know also that this was a conscious decision and effort on his part, applied with uncommon energy even in the throes of terminal cancer, in fact because of the cancer.

Facing the certainty of death, he underwent a dramatic shuffling and reordering of priorities. Relationship thrived at the core of his being. He reached out, to family, to friends, to enemies, to the otherwise anonymous human being.

My brother had this advantage. He knew with a certainty that he would soon be leaving this world. The knowledge freed him. He was able at last to devote himself to love, to forgiveness, to connection despite the barriers of the past which imprison.

I call this an advantage, and so I believe. There appears to be no better way to recapture the essential goodness that should always have been at the very heart of our being than to find oneself facing the absolute end of all of life’s hermit-like carefulness and conceit.

My friends, we are all about to die, we are all about to leave this world. We who have MS, or any other serious disease, bear within ourselves the workings of our own demise. Please don’t misunderstand me. I am not saying that MS is always fatal. It is, however, very often closely acquainted with whatever does prove fatal in the end.

We have, therefore, no time to waste. We have nothing to protect ourselves against other than the illusion that time is on our side. Reach out, love, mend, heal, encourage, reconnect—and if those in the world who are healthy and eternal will not receive the good will you offer, do not tire, but try yet again, and know that you were born to do so.

Friday, November 7, 2008

It's The Ambiance

Clearly I need to purchase my own table at Starbucks. They could do that, couldn’t they. Kind of like the way people used to buy pews at church, and then slap on a brass placard bearing the family name.

The three problems with Starbucks are these:

1. There are not enough tables.
2. There are not enough wall sockets.
3, If you frequent the same Starbucks often enough, you end up making acquaintances with people who would otherwise be perfect strangers, and therefore find yourself compelled to actually visit with these people instead of applying yourself to the main purpose that brought you there (which, in my case, is to write questionably worthwhile blog entries).

I have tried to expand my area of coverage, as well as to explore new options, but my success has been minimal.

At one Starbucks location I very often end up helping Tseng, a middle-aged Laotian man, with his English. He has been studying English grammar for a while now (about 30 years, I believe), and continues to have some trouble. I am a good teacher, he says. It’s kind of like when I tell my dog that he’s the best dog in the world, both of us knowing full well that he is the only dog I own.

At another Starbucks I consistently run into my stepson’s old girlfriend. I think she lives there. Or maybe she works there. And I think she holds a torch. I haven’t seen or talked to my stepson for quite a long time now, so we run short on material. For this reason, I’ve taken to making things up. That Preston is going into NASA, for instance, or that he just got back from Manchuria, or that he’s dating the bearded lady from the circus currently passing through town. I don’t fault myself for this. After all, for all I know, these things could be true.

The problem with some of these places has not so much to do with people, but simply with location. The Starbucks on Gleason, for instance, crowds so closely to the busy road that I was actually splashed by rain water once—while sitting at a table inside, mind you!

On the West side of town there is a Starbucks that is very large indeed—plenty of room—with easy chairs and cushioned footstools, comfy looking communal areas, and lonely tables lurking in corners for unsociable people like me. But where are the wall sockets? They are on one wall only, five of them, lined up beneath a high counter. One sits on a bar stool in order to reach the counter top, feeling rather as if he is on stilts and ought to have a foamy Budweiser at hand. Not to mention an ashtray.

My wife and I went to the same Starbucks, to the same church, and frequented the same nightclub long before we actually met one another.


Perhaps you will say that I ought to just stay home, drink my own coffee, sit at my own table in my own chair, and compose these pearls of wisdom and profundity in the comfort and solitude of my own domicile. And that may be right. It may be so.

Still and all, it wouldn’t be quite the same. Would it?

Thursday, November 6, 2008

When, How, Why--Part II

I guess you could say I had a nervous breakdown. It seems perfectly appropriate, in hindsight anyway, to describe it as such—for MS is itself a breakdown in the proper functioning of the central nervous system, the autoimmune response.

October 2004 marked the end of my 13 year long second marriage. The ensuing months were filled day by day with the strongest, most active sorts of emotions. There were accusations and bitter words, betrayals, anger, sorrow, tears and sobbing that racked the body physically and clutched deeply to the soul, wrenching it from peace, from rest.

There was confusion, guilt, exhaustion, regret. There was the love for another woman admixed with self-hatred. All the new hope of love struggled with all the powers of dissolution and recrimination. My heart sought asylum among the unforgiving fires of hell.

I began to drink again, for the first time in 10 years, an effort at self-medication, I suppose. And that made things even worse, as had always been the case.

Psychically, I suffered an existence defined by an insurmountable sort of irony: I was living both in the bosom of love and in the dungeon of sorrow. And here, in this place, most certainly the center cannot hold.

And so I broke down, from top to bottom, from inside and out. The circuits fried, the system crashed. Multiple sclerosis, dormant through all these years, awakened at the core of my existence, stretched its arms and legs, and began its business in my brain and spinal cord, and from thence throughout my body.

This is my theory, based on theories.

I have emerged, yet as through fire. My health was left behind. My children were left behind. A lifelong friend, a 13 year marriage, a family, left behind. A wonderful young woman, an angel of patience and compassion, lost.

My peace is found in the purity of those things that were set to flame and yet survived—the essence of what was, is, and always will be best.

Faith, hope, love, these three; but the greatest of these is love.

Wednesday, November 5, 2008

When, How, Why--Part I

When does MS enter the body? Or is it just there to begin with, as present yet hidden as ones own skeleton? Does one catch it somehow, or is it merely activated at some point? And then by what?

There are enough theories to go around, of course. One theory says that MS arises as a result of Epstein-Barr Virus (mononucleosis). Although the person so stricken recovers from the initial illness, something in the meantime has happened in the autoimmune system, which may or may not rear its head in the future (whether it does or does not being another mystery leading to another set of theories).

Some say that the cause of MS is to be found in viruses and bacteria rather than in a malfunctioning immune system.

On the fringe of reasonable sounding scenarios are, of course, the wacky theories—the conspiracy theories, if you will. It is all because of cow’s milk, for instance. It is because of childhood immunizations. It comes from air pollution. It is a result of child abuse.

Does it matter? No, not really. Not for we who have it and are living with it.

And yet we ask the question, we want to know, for there is nothing more frustrating, or unfair, we think, than having to poke about in the dark for the shape of ones own life.

My favorite theory, and the one I currently subscribe to, is this: MS may lie dormant in the nervous system for many years, or even forever. In order to manifest it needs a key, an event, a jump start. Some researchers have raised the notion that this start-up, this critical event, may be actuated by a correspondingly significant stressful event in the life of he who bears the disease.

This critical event may have come in the form of a severe illness. It may in fact have been born out of trauma of any sort—including emotional trauma.

So here’s the long and short, in my case. When I was 17 years old I contracted a severe case of mononucleosis. Though I recovered and was well for many years afterwards, MS had nonetheless been conceived. It had, in other words, become a potential, like the universe before the big bang.

Now, what was the key that started its motor, what was the word that called it forth—Rise and walk!

It happened in late 2004.

And I’ll tell you about it in Part II.

Tuesday, November 4, 2008

You Too Can Be a Master Blogger

So here we are—up and running for about a week now, right? I’m a blogger. I blog. I think along bloggish lines and I often feel rather bloggy, especially in the morning. I have a blogover, which is preferable to the hangovers I used to subscribe to.

Sadly, though, it seems that people seldom leave comments. I wonder why? Could it be because I’m so damn blogging, I mean boring? Oh well, I can’t keep it a secret forever. People are bound to find out.

Today I went to the dentist, and the only thing that hurt afterwards was my entire body. Not my teeth. I don’t know if there is an official medical term for this, but I’ll just call it turning to stone syndrome. If I try to lie prone for any significant amount of time my muscles tend to freeze in that fashion. When called upon to resume movement they object and cry out in disbelief.

I feel like the easiest, least painful way to get back to my feet would be for someone to stand by with a giant spatula and kind of flip me upright; but of course this method, particularly within the space available in the dentist’s cramped examination room, would be less than practicable, not to mention embarrassing.

But at home, when getting out of bed for instance, it works. I just drop and roll. This, I know, is what the experts advise in the event that one finds himself on fire, but I can confidently attest that it works just as well for MS. Moreover, if I ever do find myself aflame, I will already be well practiced in self-extinguishment. This is but another of the many beneficial things one learns from having MS.

These are the fringe benefits of our disease, the silver linings, the tidbits tucked into the small print.


But to return to blogging—I find that my pages have been downloaded not only in the US, but in Scotland, and in Canada, and in Turkey! Now that’s what I call exotic. I find myself eagerly anticipating a hit from Fiji, or Kuwait, or the Himalayas. I am suddenly a citizen of the world. In my own mind, anyway.

Seriously though, I do believe that each connection, each communal gesture is precious. Here is a greeting from an MS sufferer, and here a nod from a brother, a sister, a fellow member of the human race.

God bless us, everyone.

Monday, November 3, 2008

Before It Is Too Late

I am not dying. Not because of MS anyway. Or of anything else that I know of at the moment. But I am living more vitally, more completely--and that is because of MS. It's an irony, yes? A paradox.

Illness and disability have a way of making mortality more real, more immediate, than it had seemed before. The motions of time have entered me physically, flowing now in my blood, buzzing in my extremities, burning little holes in my brain.

What I do not do today may not have time for being done tomorrow. I am pressed, impatient, frustrated by the notion of proper channels and appropriate emotions. I want to connect, today, this minute, for I have come to realize that time has never been a thing that could be spared.

I want to retrieve the embers of all in life that has been best, to catch them up, still glowing, from the dreary depths to which they had been sent by weakness, by pride, by wounded love, and hold them again--not to remember, but to see, to touch, to redraw the very breath of conception.

Please believe me--the past is not so very important that it should accompany the future to its death. Here is where all the chances are stored up--here, now, in this time, this life. How sad when even a single one is let slip between our fingers.


Multiple sclerosis, writing, family, work, etc. Life in general. I guess that leaves a lot of room to write about things other than MS. It does, after all, get old. I’ve said it before, and I’ll say it again. MS gets old.

Just now I’d like to talk about language—specifically the dueling tongues that are presently battling for the upper hand in my home. We have me speaking English, Sant Louis speaking Bahasa Indonesia, Albert speaking both, and Mamdouh speaking Arabic. If you count in the dogs, we also have Labradorian and Chihuahuan.

I believe that the dogs are showing the surest grasp of communication in this multilingual environment. They seem to know when they have done well or done badly, whether they are to come or to go, whether they are to sleep or play, no matter what language is being spoken at any given moment. They know when to eat. They know when to come inside. They know when it is time for a walk. The only thing they don’t know is when to be quiet.

Now, if Albert speaks to Sant Louis in Indonesian, only the two of them (and the dogs, of course) know what is being said. This is because they speak very rapidly and almost completely in a sublanguage of slang.

If I say something to Sant Louis in Indonesian, only I, Albert, and Sant Louis (and the dogs) know what I am saying. Of course, much of my Indonesian is so bad that it may as well be Martian, in which case I am on my own, shared meaning being a prerequisite to communication. I may as well be speaking in tongues, which only God Himself will understand, assuming He has the time to sort it out. Who knows, maybe my tongues are just as bad as my Indonesian.

Now, if we, any of us, speak English in addressing Mamdouh, he both understands and does not understand. Here is where he and I are similar, both of us able to receive some portion, able to impart some fragment of personal intent, yet forever lurking at the hazy edges of useful comprehension.

If Mamdouh speaks Arabic, he and the dogs are on their own. Only they among all in our household know what he is saying. It may be that he is complaining (to a friend on the phone, for instance) about the lousy dinner we served him last night. It may be that he is expressing his awe at my intelligence and wisdom. It may be that he and his mates are addressing the fine details of a plan to blow up some city structure of high profile.

It is all a challenge, all interesting, all perplexing. We move about in a world of noises, a world of whispers and shouts and everything in between, a world of endless conflict and resolution. And words are not enough. Even if two and three people speak the same language, words are still not enough. We rely more on a sort of poetry than we like to imagine or admit.

Sunday, November 2, 2008

Are You Sleeping?

Here’s another thing that I don’t understand. How does one know if he has transitioned into secondary progressive MS from relapsing remitting? I have not had an attack since May 2007, as far as I know (and as far as the MRIs show). I have not awakened blind in one eye, or dead in one arm, or unable to defecate, or unable to walk.

Yet these would all be new symptoms, and rather profoundly severe ones. In short, it would be obvious that I had suffered a new attack, and therefore also obvious (as far as I understand it) that I still have RRMS.

But what about the quieter damage that occurs over time? No major events, and yet something may be happening. Am I getting worse? I don’t know. Some days I would believe it to be so, especially where my cognitive functioning is concerned. Do I become simply more aware of a baseline failure to perform, or are these the baby steps my central nervous system is taking on the road of progressive deterioration?

MS is stealthy. It mixes in with the crowd. Where’s Waldo?

Even now I cannot say exactly when it began. Generally I tend to think of events in the spring of 2005 as the beginning. Something had changed significantly enough to cause me to seek answers from my physician. I could not think straight. I would end up in supermarket aisles suddenly wondering why I was there and when I had come there. I would try to open my apartment door with the car beeper. I was light-headed and spacey, drifting in and out of a pervasive fog.

Still undiagnosed, I had my second obvious attack in May 2007. Driven again to see a doctor because of numb and tingling feet and legs, I was sent yet again for an MRI, and this time diagnosed.

You all know the drill.

But here’s the thing--between spring 2005 and spring 2007 I had no noticeable symptoms at all. Clearly something had happened in my body, and had continued to happen, or be, at a low level between times.

Relapsing remitting, right?

And then nothing. One and a half years out now from my second attack. Am I due for a relapse? Have I graduated to SPMS?

As with so many things, not only where MS is concerned, but about life in general, I just don’t know

Saturday, November 1, 2008

Get Used To It

It seems that MS is in some way a disease of acclimation. There's really not much of a choice, is there? You get used to its daily residence in your body, it's nothing new (and you hope that it never becomes something new).

Yesterday, for instance, both my legs were very stiff. I made adjustments to my gait. I watched where I was going.

Are you okay? Sant Louis asks.

Dude, are you having trouble walking?" Albert inquires. You look like you're limping or something.

Uh, hello. I have MS. Remember?

Today my legs are moving in a bit more of a human way, but they ache--in between the sharp pains that shoot from my knees to my shins, that is.

I may not like it, but the damn things are attached to me. What are you gonna do?

Acclimate. Get used to it. Do I even remember what my body used to feel like, a mere five years ago?

Would it matter if I did?