Wednesday, December 31, 2008

Happy, Happy, Birthday Baby

For all my complaining and melancholy, not to say melodramatic ruminations, I cannot help but observe at the same time that turning 55 (almost) is just about the best thing that has ever happened to me. Given a choice, I’d just as soon stay this age for the rest of my life.

I remember feeling the same way when I was 12. It was not that the number was somehow magic, nor that 12 was the same for anyone else; it is simply that at 12, and now at 55, things seemed to fall in place, become aligned, like the meshing of gears. My life proceeds almost without effort on my own part.

I think less and less of the past, less and less of the future, more of today, this minute and hour.

Sufficient unto the day is the evil thereof.

And it is. We need not compound it with admixing the sand of the past with the mercurial future. It is what it is, as the popular saying goes. Experience has in many ways been the schoolmaster of hope for long enough now, that hope, at last, has comprehended the face of its Christ, which is faith, dividing want from assurance, dream from vision.

One of the great ironies of self knowledge lies in the recession of self and the raising to preeminence of all that is other. If one would live, he must first of all die. And not only once, but over and over. I die daily, St. Paul said. And so do we all. It is willingness that finally differentiates growth from a sense of persecution and victimization.

Take up you your cross. And enjoy it. In heaven it is what they do for shits and giggles.

Monday, December 29, 2008

The King is Dead; Long Live the King

Lets all sink with the King
--Alonzo, The Tempest

The end of the year brings me to reflection, as I suppose is often the case for most. It seems a dreary time, and quiet. There seems a waiting to it, while events gather in secret, wrapped in the future like the rain which hoards itself in clouds before they break--all in good time--and revelation becomes manifest.

I have no dreams other than those which have fled. My goals are the boundary markers which describe the lands long departed from, frozen in testimony to what is both changeless and unchangeable.

And I wonder what I am doing here. I perceive myself as a second thought, brought to life in the flesh by some sort of unwise science--a Frankenstein monster--made of parts yet never a whole, pinned to the earth, to the table of creation, by every stitch and scar by which I am drawn and concluded. The beginning now becomes the end.

In my life I have made a few good decisions and a lot of bad mistakes. I have been a fool when wisdom would have suited, and lazy in the days I might have otherwise redeemed.

In the past I have loved with passion and conviction. What is love now other than a fortune already expended, and whether for good or ill, no matter. It is the finished canvas, the portrait on the wall. One passes it by two dozen times a day and affords it barely a glance. It is done, and simply there.

I have seen people die--almost everyone eventually--and will likely see no more without I happen to have a mirror.

Do I love at all, or only remember?

What are 10 years when one is 20 and 30? What when 55?

All that I would accomplish, given a lively grasp of every second remaining, lies yet unattainable beyond the chasm of time, fixed in the frozen land where no man may tread.

In short, I would re-accomplish my life.

What seest thou else

In the dark backward and abysm of time?

So asked Prospero of his daughter, Miranda, who knew neither how he nor she had come to their full poor cell.

And yet, what we see will never be more than what has been done. We both know and do not know, and the puzzle is both solved and without solution.

Friday, December 26, 2008

Squeaky White Christmas

In the last two years, I have fallen into a rather strange Christmas habit. Lets call it a Christmas tradition. This came about after a Christmas visit from my mother in law. While at the house those couple years back she spent much of her time either cleaning or cooking.

Sadly however, after that visit--or because of it--she and my wife had a falling out, and she has not visited us since. Now there are certain things, as the passage of time has proven, that only Salma will do. Cleaning the bathtub is one of these things. At various points throughout the year we may go as far as to notice this and confess a certain desire for another visit by mom.

It is sort of a running joke, you might say. Whenever the subject of some mutually deplorable job arises, it is a safe bet that one or the other of us will say "I wish mom were here."

But of course neither wishing nor joking has any effect on the bathtub itself. It simply continues to gather grime.

And so it has become my Christmas tradition to clean the grimy bathtub. While other people play with their toys or listen to new music or eat candy and cake, or go back to sleep, I ceremoniously remove all my clothing, retrieve the stiff bristled wooden handled brush that is used for nothing else, climb into the tub, toxic spray bottles in hand, and scrub! Off comes a year's worth of no longer useful dirt, swirling merrily down the drain. Oh look! It's white underneath!

White Christmas.

Take that, Mom!

Now what about that laundry room, that corner where the mouse lives. He must have a family by now . . .

Should I? Should I expand my seasonal tradition?

Well, maybe just wait for New Years Eve.

Wednesday, December 24, 2008

No Problem

As far as I can calculate, our foreign exchange student, Mamdouh, knows, with confidence, no more than seven words of English. These are Yes, No, Hi, Bye, Now, and No problem.

As a rule, foreign exchange students will tend to learn more of English as they mix in with our conversation and culture. In the case of Mamdouh, however, I believe he has actually learned less of English than he started with.

I asked him the other day, for instance, whether he would prefer a piece of toast or a waffle, and he said Yes.

I asked if this meant he wanted both, and he said Now?

You see how it goes?

At another time I had loaned him my cigarette lighter for a moment. When, later, I could not find the lighter, and asked him about it, he told me that this was No problem.

I expressed my feeling that it may not be a problem to him, but it was, in fact, a bit of a problem for me.

Yes, he answered.

We have not seen Mamdouh for three days now. While the rest of the city lies frozen in the present blizzard of snow and ice, Mamdouh is out somewhere driving with his buddies in his new Camry, no snow tires, no chains, no experience.

It is, as he says, No problem.

Tuesday, December 23, 2008

I know it must sound silly to you folks who are accustomed to snow in the winter, but here in Portland, Oregon, when it snows, life stops. Your car is stuck, you can't go anywhere without chains, and even with chains on, most of us have no idea how to drive in the snow anyway.

So it happens that we find ourselves stuck in the house. Day after day. The simplest things have become impossible--a cup of Starbucks, a trip to the store, not to mention Christmas shopping. Good thing he have no money anyway, because there is no way this Christmas week to get out and buy anything.

White Christmas is not all it's cracked up to be. It may have worked in the old days, when people traveled on horseback, or riding in a sleigh, but it doesn't work for cars.

A horse, a horse, my kingdom for a horse.

Cabin fever. It gets so bad that you actually sit down and write meaningless crap like this just for something to do.

Monday, December 22, 2008

Nicotine Fit

I do not know my limits with MS. I only discover them after it is too late.

Today's discovery came about because of cigarettes, or rather a lack of the same. It is snowing here, you see, and the night has deposited an inch or so of sleet on top of the snow, and neither the snow nor the sleet are going anywhere soon, as the temperature remains at around 20 degrees Fahrenheit (not to mention the wind chill factor, nor indeed that the wind is blowing like a bastard out of hell).

This, of course, means no possibility of driving. It means that the only way to get cigarettes will be to walk eight blocks to the 7-11 store.

I decide to quit instead. I am struck suddenly with a profound sense of the sort of desperation that nicotine addiction can drive one to. I resolve that this is where I draw the line--between prudence and madness, between addiction and self control.

Ten minutes later, in coat and hood and hat and gloves, I head out the door.

One of the first things I realize after 2 blocks or so is that the wind is blowing in every direction at once. This is not actually supposed to happen according to natural laws, but the evidence, as it buffets all sides of my body, is undeniable.

The second thing I realize, on perhaps the fourth block, is that I have MS and my left leg has stiffened up like a frozen screw and bolt, and I am probably not going to make it to the 7-11, much less back home again.

Frozen also are my nose and my lips, along with my last Camel, which, protruding from the unfeeling corner of my mouth, may or may not have burned through the filter and down to the skin--I don't know, because 1) I can't feel my face, and 2) I can't see out of the film of ice that has formed on the lenses of my spectacles.

I am halfway to the store, halfway from home. I forge on, doing my best to bring my left leg along with me. If I don't make it, if I collapse here in a snowbank, people will at least be able to follow the drag marks left by my useless foot. He came this way, the searchers will say, I can see the track from the side of his Nike.

A block away now. My face is a frozen mask, my lips rigid in the form of the last puff they took on the Camel. In my own imaginary mirror I look just like Lee Harvey Oswald at the moment he was shot by Jack Ruby. If you have ever seen the picture, you will know what I mean. I have taken off my glasses in order to see the snowdrifts in my way, but I think now that my eyeballs themselves are freezing, for I can see hardly any better than before.

Can I really, having come this far, enter the 7-11 looking like this--frozen face mimicking the shock of murder, eyeballs fixed like a doll's, dragging my left leg as if I had in fact just recently been shot?

But of course I must. It's between that and joining the snowmen I have met in yards along the way.

The clerk, a friendly woman from Nepal who knows me well, brings my cigarettes to the counter without needing to be asked. It is a stroke of good luck that she is there, for I cannot move my lips, and another employee may not have been able to understand my gestures.

I held up a hand, however. Then I removed the glove and and spread my five fingers.

I'm not doing this again. Not anytime soon. Five packs will last me five days, and perhaps, just perhaps, both I and the city will thaw out by then.

Thursday, December 18, 2008

A Rumor or Arabia, Part III

Though I hesitate to say so, I do believe that I have learned more about Saudi Arabia from Osama bin Laden than from our exchange student, Mamdouh al-Shammari.

Why? Because in two months I have seen Mamdouh only about as many times as I can count on two hands. And of course seeing him is not the same as talking to him. One can just as often see a newspaper photo of bin Laden.

On the other hand, who has really seen bin Laden in the flesh?

These Saudis are elusive. They are like the wind, originating from who knows where, and going who knows where. Chimeras and specters, whispers in the night.

What do I know from Mamdouh of Saudi Arabia. It never rains. Saudis like Americans. Saudis hate Osama bin Laden. They hated Saddam Hussein. They think that Whats-His-Name, the President of Iran, is a lunatic.

This is what Mamdouh has told me. This is all I know.

Other than that, as regards information, a travel guide is much to be preferred.

It is snowing here in Portland. The streets are covered with snow. Mamdouh has never before in his life seen snow, much less driven a car on it. And yet he drives. How is it that he knows how to drive in the snow.

It is but another in a catalog or mysteries.

A Rumor of Arabia, Part II

Now you see here is the perfect example--Yesterday (Tuesday) Mamdouh returned to the house at about 10 a.m. from wherever he had been all night, promptly went to bed, and slept throughout the day and the following evening. My wife and I went to bed at perhaps midnight, and then somewhere during the witching hours, Mamdouh arose and slipped quietly away into the night once again.

Does this seem a bit mysterious? It seems so to me. Where could he be going? What might he be doing?

We know that he has friends, fellow countrymen, who live downtown and also go to the University--but do they all stay up through the night and sleep out the day? The question does not change with added characters. One merely wonders now what all of them are doing.

It may seem odd, given the multitude of more reasonable suspicions that might have entered my mind, but my first thought was that he might be a vampire. In fact, I still haven't ruled it out. After all, is this pattern not typical, even classic, for characters such as these? By day they take to their coffins, to sleep away the hours of light (or maybe they read books or do knitting--something, in any case, quiet and bloodless and only dimly lit). Then comes the night, where violent secrets come to life, wherein the chains of light are severed and the creatures roam free, ravenous, stalking the coed and the bag lady alike, for the taste is for blood, not for beauty (no matter what comes out of Hollywood).

I think, anyway. Although I'm not an expert on vampires. It strains the imagination, such that in the light of day even I cannot fend off disbelief.

And yet . . . did I imagine it, was it the wind, or the neighbor playing his TV too loudly, was it the freight train down by the slough . . . or was it a howl that I heard, a wolf-like gasp of thirst trailing from the open window of Mamdouh's ghostly coach (a 2003 Camry) . . . Maaaaam-doooooo-oooooooo-ooooooouh . . . .

Wednesday, December 17, 2008

A Rumor of Arabia, Part I

It seems that my entrepreneurial wife was right—hosting a foreign exchange student is a lucrative side business, assuming one is lucky enough to get the right student.

I suppose one could end up with a student who actually wanted to talk, or watch TV together, or go to the mall, or share details about his culture, or eat with his adopted family—and of course that might prove irritating.

But with Mamdouh it has been more like hosting a ghost, or a mouse you happen to see scurry across the porch from time to time. We find more often evidence of his presence than the actual corporeal entity. His underwear, for instance, on the counter top in the bathroom. His five packages of pita bread in the fridge. Cheese from home. The peanut butter cookies on his closet floor.

He is a specter, a rumor. There is more of idea about him than actual existence. Sometimes you can smell cologne as you pass his room, but that is all, for he is not there, it is only his scent, an odor of verbena, a whisper, Maaaam-doooo-ooh . . .

Yesterday I actually forgot his name. I kept thinking Marmaduke or Monsoon or Timbuktu.

I did talk to him recently. I think it was on Sunday. He had been out all night, came in sometime during the wee hours, and slept through the day until about 8 on Sunday evening.

“Wow,” I said. “You slept through the whole day, Mamdouh.”

“Yes,” he said.

And then he was gone.

Tuesday, December 16, 2008


Snow in Portland this week. A fairly rare occurrence here. It will generally snow maybe once or twice in the winter, then quickly turn to rain and slush. But this week the temperatures are in the teens and 20s and we have some bitter winds that are keeping things frozen. Yesterday my wife wouldn't let me go out, but then she took a nap later and I snuck away for a Starbucks.

Saturday, December 13, 2008

The Ghost of Christmas Past

This morning I talked to my long lost daughter. One of them anyway. We talked via e-mail, as I had sent best wishes for the holiday. She mentioned that Christmas is not the same anymore. And of course it isn’t. It never is.

I can identify, because for me Christmas hasn’t been the same for decades now.

What Jamila is missing, of course, is her own childhood, a feeling of familiarity and security, a foundation that seemed permanent, yet proved transitory. Children count on their parents at the deepest level—and even though I was not her biologic father, I was nonetheless the closest thing she had known to a father. Twelve years is a long time to a child. Twelve years is equal to permanence.

And then the whole thing crashed, as she said in her e-mail. The whole thing just disappeared.

What is Christmas? What is family? Where is home?

It is what we remember. It is the elusive set of feelings and smells and tastes and faces and voices and times and journeys emanating yet from the past like specters out of Dickens. The bell above the door tinkles, the knob turns, and no amount of locks and bolts can keep us from the visitation.

What is it by which we find ourselves confronted?

It is love, of course. Pure and simple.

Friday, December 12, 2008

Merry Christmas To All!

War As Usual

Is this a messed up world or what? These days we are living through remind me of the Vietnam era in some ways. Endless war, disaffection at home, a hunger for real change, and the conceit that real change can be had.

We read again about the threat of nuclear war, this time between India and Pakistan. We read of American soldiers injected into impossible circumstances, picked off by 2 and 3 and a dozen, sitting ducks in the shooting gallery of political indecision, lack of will, shifting focus, and ambiguous purpose.

I happened to hear Ted Koppel on NPR point out that American tax payers have not paid a single dollar to finance our present military conflicts. The money has been borrowed from other countries, China in particular.

What interest does China have in financing these wars? Well, of course it has none, other than the money.

It is all about money. Money has no friends, money has no enemies. It has always been so.

Thursday, December 11, 2008

The Lost Post

Well folks, you're just going to have to take my word for it . . . earlier this morning I wrote a post of absolute genius and beauty, eloquence and wisdom, a post to end all posts, the mother of all posts . . . It was about God and life and destiny and meaning . . . but it disappeared before I was able to save and publish.

I'm blaming this on the computer. I need a new laptop. I am blaming this on the failure of laptops to perform as well as a pencil and paper. I am blaming it on MS, because I have no idea what happened to the post or where it went. I only know that my wonderful bit of wisdom for the day is gone forever. And because of MS there exists nary the smallest word of the thing any longer in my mind.

All I can ask is that you just try to imagine it. And enjoy.

Monday, December 8, 2008

News, So-Called

Logging in this morning through the MSN home screen, on my way to better things, my eye happened to catch a "news" story about Barrach Obama's smoking, and having to field tough questions regarding the same in an interview with Tom Brokaw.

Scandalous! First we have a President with sexual urges, and now we have one who smokes! What next? A President who imbibes strong spirits? Lordy, lordy.

Tobacco products in one form or another, the cigarette, the cigar, continue to insert themselves into the affairs of the White House, in some cases literally so.

Oh the shame.

In other breaking news, researchers have found that people with MS are more likely to have headaches. Yes, it's true. No kidding. Specifically why this might be so is a question yet to be fully answered. Could it be because our central nervous systems are fucked up in general? Could it be the propensity of the person with MS to fall over his own feet and land on his head? Could it be because we are always struggling to stay awake and functional despite relentless fatigue?

Or maybe it is our brainstem lesions, as researchers have suggested. That's got to hurt on some level, right? This last, however, is not a finding based on stringent scientific data. It is only common sense.

To Blog Or Not To Blog?

Blogging seems to be a fairly lonely sort of business. One is alone with his thoughts, as is the case 99 percent of the time anyway in life, and the only difference here is that he is for some reason writing them down. Why? So that he can be clear about what he himself is thinking?

No, I don't believe so.

Why write then? Why blog?

One suspects that an audience is either anticipated or imagined. Perhaps it is someone loved. Perhaps someone lost. Perhaps it is a group of like-minded friends. Perhaps it is a group having something in common. Like MS, for instance.

Perhaps we simply want to speak, and to hear a voice in return. Society seems to become less and less a community, more and more a scattering of isolated fragments, buck shot, trying to remember not only what barrel they came out of, but what the original target had been.

We set our fingers to the keyboard, we direct our thoughts into hyperspace. We say, essentially, Is anyone there?

And we wait. And we listen very closely. And we think anew.

There are observatories devoted to listening to space. There are devices that listen to the nearest star, to the nearest galaxy, to the asteroid belt and the rings of Saturn, and to planets and solar systems that are no more than theory.

And what is the answer, what sound does it make?

It is the sound of one hand clapping, I suppose.

Saturday, December 6, 2008

Get Rich Quick

My wife is a natural born entrepreneur.

This is a word that would give her some trouble as far as pronunciation goes, being foreign not only to Indonesian, but to English as well. It is not a word that rolls smoothly off the tongue—like moon, or mango, or salamat malam. Rather, it is a word hopelessly at odds with the rolling and trilling Indonesian language.

No matter—for the concept is in her blood, the way duck hunting is in a Labrador’s blood, or mousing in a cat’s. No need for verbalization. She has money in her blood, and of course it must come out and breathe the air of the wide world of possibility, for one can only sell just so much of the raw material to the Red Cross before anemia sets in.

Many a time have I pondered where the root of this proclivity might be found. Does it arise from a childhood of poverty in Jakarta? Does it come from her father’s ambitious, though sadly unrealized notions of status and rank? Or did she catch this particular bug in America, the land of the quick buck and the sly scheme? Are riches dreamed of sight unseen, or only after the feasting of the eyes?

The answers to questions such as these remain to this day wholly in the realm of my own imagination, for Louis is a woman of few words when it comes to the particulars of the forces by which she is driven. She keeps her own counsel. This is both a good thing, as regards the confidence of character (i.e. bull-headed will to go forward), and a bad thing, as shall later be seen in more detail.

The first opportunity to rise in the world to which I was privy (to the tune of ten thousand dollars) was her (which is our) entry into the business of real estate with Pastor Corey Pritchet,

More about that later.

The second was a pyramid scheme wherein one sells memberships in a company offering, ostensibly, free legal advice, which is, in keeping with proper balances and measures, worth exactly what it purports to be worth. The trick is that if the individual entrepreneur can get ten thousands friends, give or take, to sign on to monthly memberships, she will make for herself, oh, say, ten million dollars in the first six months.

I love money, money loves me.

These are the words to a song which is sung at ITTL (I take the lead) seminars.

We are magnets for money. It just keeps gushing in, threatening to choke us.

And now comes my personal favorite. Sex toys.

Yes. I do not know where she initially came up with the idea. Perhaps she was one of ten thousand signed on by another entrepreneur. In any case, one day Louis showed up at home lugging an enormous suitcase filled with penises and vaginas, love beads and love potions, strawberry flavored massage oil, whipped cream, hot pink things that look like minuture toilet plungers; things that hum, things that buzz, things that flash and crawl about like lazy ferrets.

I make a sex party! she says.

Uh . . . .

Now the funniest part of this is not the toys themselves, but the juxtaposition of the toys with the person of Sant Louis—sweet and innocent Louis, church-going Louis—the conservative, proper, level-headed Louis I know and love.

What does this one do? she wants to know.

I sure do love Sant Louis.

Via the inscrutable route of sex toys, we now arrive at Saudi Arabia, and one Mamdouh Al-Shimari. The latest road to riches is to be found in the trafficking of foreign exchange students. Mamdouh is the first, but there will be more coming, Louis promises.

Here is where I get stuck—early on, as always. I am guilty, as often judged, of an inability to see the big picture, to comprehend the vision.

But here’s the thing—I can’t get past the difficulty that seems apparent in the fact that we have only one three bedroom house and four people already living therein. Are we to pack these students in on the sort of racks they have in submarines? Will we have henceforth a mess hall rather than a dining room? Will we send to whole troop on Tuesdays to the laundromat, or just set up our own where the kitchen used to be?

You see, I am easily lost in the details. Money is not in my blood. I am not really sure what is. Multiple sclerosis for one thing—which itself is not amenable to being stretched, exercised, challenged, shaken, or agitated.

But these limitations do not fit into my wife’s vision. And it is for this reason—nothing personal—that I had best shut-up and follow her lead. Faith is not a synonym for success. It is very much more like surrender.

What, after all, do I have to lose?

Thursday, December 4, 2008

Travel II

As a matter of fact, while the rest of the fam went to the Tennessee aquarium to gawk over other peoples shoulders at the sea life they could have otherwise seen just down the street from our house in Oregon, I excused myself (claiming to feel seasick), and struck out instead into the unseen, undiscovered heart of Chattanooga. Ambling ever so happily under the rusty October sun, I passed by pre-Civil War churches, houses with blue and red shutters, over train tracks that spilled off the looming slopes of Lookout Mountain like frozen streams. I saluted everyone I passed, listening for accents, weighing the nuances that made one person Tennessee and another Georgia.

By the time the family stumbled blinky-eyed out of the stuffy aquarium, I had found a wonderful restaurant called Sticky Fingers, offering barbecued chicken and ribs, cornbread and greens and beans, and hand tossed biscuits which the employees actually threw at the diners from the balcony above the main floor.

Now does that beat sand crabs and squid, or what? Honestly, what is better--a live shrimp drifting through the murky green water behind three inches of glass, or one that's sitting on your plate next to a little amber pool of Carolina honey sauce?

You tell me.

Travel I

For as long as I can remember I have had this dream of traveling, of wandering wheresoever the whim might take me. The trouble is, I have always been either poor or married, neither of which works well for carefree excursions.

Poverty provides its own definition in this case, so we will say no more.

Marriage . . . well, let me offer an example:

Some years back my second wife and I flew down to Atlanta, Georgia to visit our daughter, living there were her husband and their child. How strange and wonderful it seemed--for one who had rarely been out of Oregon, anyway--the red clay, the humid days, the enormous bugs--June Bugs! It seemed perfectly exotic.

Best of all (or so I had initially thought) was the ocean of history lying all about, just waiting for me to dive in. Specifically, I am talking about Civil War history, in which I had long been an avid reader. Here was the chance to visit the battlefields around the city of Atlanta itself--Peach Tree Creek, Jonesboro! From the city you could drive North and follow in reverse the route taken by William Tecumseh Sherman in his investment of this hub of the Confederacy.

Yet farther north, just short of Tennessee, lay the battlefield called Chickamauga, after the stream running through. Here is where Hood's Texans split the center of the Union line. Here is the gentle knoll where General Thomas, the rock of Chickamauga, held off the final Rebel push in pursuit of the fleeing fragments of the Federal army.

And here, on that same hallowed battlefield, is where the potential of fascination in travel vanished. For what my wife and daughter had in mind was to drive straight through, entry to exit, ten minutes of history from the passenger seat of a rental car.

You can roll down the window, my wife said. I can drive through slowly.

I insisted on getting out of the car. I walked through the grass, upon the ground where thousands had struggled in combat well over one hundred years ago, where thousands had fallen, their country's fate in the balance.

I was thinking I might be standing on the very spot occupied by General James Longstreet's horse when my wife honked the horn.

And then on to Chattanooga and the Sea Life Aquarium.

Sea life in Tennessee? What did they do, truck it in from the Oregon Coast?

This is not travel. Not in my book, anyway.

Wednesday, December 3, 2008

Fat Head Dog

Having finally gotten my tooth fixed (hopefully), Smokey, the Labrador, decided to break off the one just next to it. He did this with his big, fat, hard head. Now I don't know which tooth it is that hurts--the one that has been under repair, the one Smokey broke, or both.

It's not enough, I guess, to knock me off my feet two or three times a week--which he does apparently just for laughs. Now he has to go and break my tooth. Also he broke my glasses yesterday. Just a quick right cross--didn't even see it coming.

I do not know what I've done to deserve this sort of treatment. I've tried to talk with him, but he just stares at me and tilts his head to one side.

Man's best friend. Right.

Monday, December 1, 2008

The Fountain of Youth

Okay lets get this straight. Multiple sclerosis has absolutely nothing to do with old age! If people would endeavor for themselves to discover the first thing about it, they would find that most people diagnosed with MS are between 20 and 40 years of age. But no, I hear again and again, from people who do not know what they're talking about, that MS is just another malady arising from old age--like senility or arthritis or death itself.

Because I am a good deal older than my wife, certain of her friends insist on advising that this--the risk of illness, or some other form of creaky incapacitation--was an avoidable part of such an arrangement from the start.

My objections, however, cannot help but seem a bit impotent as I totter into the debate on my cane looking exactly like . . . well, like an old man.

Does it sound a little too weird for me to wish I'd been diagnosed at 20?

I figure if anything MS makes me young, because it drops me statistically right smack dab in the midst of a much younger age group.

Put that in yer pipe and smoke it!

MS + X = Y2K

One thing that I have found to be true with multiple sclerosis--having had a couple years now to really appreciate the finer points--is that ones body is not up to dealing with anything else on top of it. A simple head cold, for instance, will cause a total system collapse--Y2K to the corporeal body, only not theory this time, but the real thing. Too many switches are already flipped, too many numbers have already rolled--BAM!, the whole organism crashes to a grinding halt.

And by anything, I do mean anything--the cold virus, yes; but also the toothache, the sprained ankle, the broken bone, the migraine headache. Each and any additional malady will be too much for MS to live with.

A toothache, for instance, is hard enough to deal with on its own merits, right? But adding it in with MS is like trying to load a grand piano onto a little red wagon. Nope, it's just not gonna fly.

Before MS we were accustomed to the rather convenient arrangement wherein a toothache would involve a tooth--maybe even the entire maxillary or mandibular set, maybe even the jaw. Now with MS the pain must go beyond the tooth, into the neck, into the legs, into the feet, for Christ's sake. The toothache must be accompanied not only by throbbing, but by body-wide exhaustion and increasing confusion.

Now try explaining this to someone else.

You fell asleep twice because of a toothache? Yeah, right. You say your tooth is making your elbow hurt? Okay . . . .

On second thought, don't bother trying to explain it.

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?

Friday, October 31, 2008

Fifteen Minutes Of Fame

Everyone gets their fifteen minutes of fame. This is a quote supposedly coming from Andy Warhol, although I think I heard once, somewhere, that it is actually a misquote. In any case, it makes its point.

Kip Kinkle, for instance, was really no one until he showed up at high school, shot some fellow students, then went home and shot his parents. Everyone knew Kip for a short while. After that, he went to a mental institution and kind of faded away.

Tiny Tim had his moment also. Not the Tiny Tim known from Dickens’ A Christmas Carol, but the one who performed on a mandolin, singing Tip-Toe Through the Tulips in a girlish voice on the Merv Griffin Show and the Mike Douglas Show.

Merv Griffin and Mike Douglas. They had their fifteen minutes.

John Lennon and Yoko Ono once co-hosted the Mike Douglas Show.

Later on, the man who killed John Lennon got his fifteen minutes of fame too.

I remember the feeling I had when my first book was published, a feeling of having been extracted from the drab soup of life and held above the bowl, suddenly particular, a bit of substance. For a moment (fifteen minutes or so) I was no longer just part of the broth, but a particular ingredient, something specific. I enjoyed a short period of self definition.

What am I? Who am I?

I am the husband of my first wife. I am the father of my son.

I am the husband of my second wife, the father of three stepchildren who never talk to me again after their mother and I divorce.

I am the man who lives in apartment 44 and has a dog. I am the guy who prefers to sit at the south end of the bar, the guy who shows up at Starbucks every morning with his laptop, looking like he just drooled out of a pasta machine.

Before I know it, I am the husband of my third wife, father of a fourth stepchild. I have a Labrador.

And then along comes multiple sclerosis. Now this is something different, something fairly original. Not everyone has MS, just like not everyone has a million dollars and a Mercedes. There are only 400,000 or so people in American who have MS, give or take (people continue to be born, people continue to die).

Once again, I find myself identified, defined. I am the only one I know personally who has MS. Some may have a mansion, some may have a lofty title, some may have appeared in a movie. I have MS. I am different, unusual, deserving of sympathy, deserving of special attention. I can park in the wheelchair spot. I can sit at the “special” table at Starbucks, reserved for the disabled, without feeling like a sociopath or a criminal. I get to carry a cane without having to feel pretentious.

Because I have MS, I get to take a shot every week that makes me feel like I have the flu.

I get to forget where I’m going, and forget, when I get there, why I am there.

I get to be chosen last for important duties, things that really need to be done.

I get to know upon a morning here and there how it feels to have been run over by a truck without having actually to walk to the highway and throw myself into traffic.

I get to walk around like a drunk, and if stopped by a cop I get to laugh in his face even as he pulls out his breathalyzer.

I get to look forward to progressive secondary MS and paralysis in my limbs and other unpleasant complications.

Well … perhaps this fifteen minutes of fame is not all its cracked up to be after all.

Thursday, October 30, 2008


Wow, I just read about a guy, a fellow Oregonian, with secondary progressive MS. Eight years younger than I, and all but completely crippled. No use of either leg, no use of right arm. Dude, that's messed up. I guess I take my rather benign relapsing and remitting type way too much for granted. On a positive note, I am already old, and so there is not that much time left for MS to do its thang. Good to be old, so good. It's all relative, right? Damn right.

Still, how old would I have to be for being crippled not to matter so much?

I don't think there's a good age for that. Even at 80, I'd prefer to still be walking on my own two feet.

Seriously. I mean, even when I'm 80, my wife will still only be 56. About my age now.


Hold on. I have an idea. Maybe it's best just to live day to day. Yeah?

Cure Or Curse, Part III, The Last

My mother had Alzheimer’s disease. In fact, she died from Alzheimer’s. She simply forgot how to breathe. Forgetting how to breathe is different than forgetting ones car keys or wallet. It is not a lapse in cognitive acuity, but the purest sort of catastrophe, and quite unforgivable.

I cannot help but celebrate the fact, therefore, that forgetting to go to the bank today does not preclude going to the bank tomorrow. Forgetting a word is not the same as forgetting a language. I may sometimes forget what day it is, yet I retain my grip on the month, the year, the century, the eon.

What day is this?

I used to quiz my mom this way.

What day? Today.

But what day of the week.


Okay, what year, Mom. Do you know the year.


She had never gotten past the turn of the century. She always answered 2000, even if you were asking her what year she was born.

Who is the President of the United States?


She had never gotten past Roosevelt, either. He had made such a vital and lasting impression in her life, and in the lives of many in her generation, that he had risen finally to the status of the eternal. The Eternal President of the United States of America, Franklin Delano Roosevelt.

In the end, all she knew were the numbers one, two, and three, which she repeated over and over again, even in her sleep.

One, two, three; one, two, three; one, two, three ….

What the hell?

When it comes to diseases, my mom sure as shit drew the short stick. Or at least that’s how I feel about it. It’s like you have to reach into the grab-bag of life not knowing what you’re going to come out with. There’s a lot of serious crap in there. Alzheimer’s, cancer, heart disease, diabetes, Parkinson’s, leprosy (and these are some of the more pleasant among the possibilities).

You reach into the bag, closing your eyes, heart thumping, sweat forming on your brow. And you come out with …

Multiple sclerosis!

Well bless my soul! Someone else gets the Old Maid, the Black Spot, this time around. Hallelujah, praise the lamb!

I am, as I said, saved by grace, smiled upon by the imp of chance.

At least until my turn comes around again.

One … two … three ….

Wednesday, October 29, 2008

Cure Or Curse, Part II

Let me explain.

Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:

I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).

I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!

Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.

You see?

Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.

The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.

We may be slow, lazy, and stupid, but at least we have a good excuse for it.

But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.

We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.

The first rule of having to disappoint others is that this comes only after disappointing ourselves.

This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.

What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?

Think again, right?

Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.

Tuesday, October 28, 2008

Cure Or Curse?

Lets say that they come up with a fix for MS. Lets say that they shoot you full of the newest poison and suddenly your autoimmune system is rebooted, and suddenly you don’t have MS anymore. Moreover, lets say that this magic potion goes even further and actually reverses damage that has already been done, restoring all the roads, repairing the washed out bridges, slapping on a new coat of paint to boot!

How then will I excuse myself in the future? How to explain the low level dementia that creeps affably about in my everyday life? What convenient, *regrettable* condition can thereafter *sadly* exempt me from employment in hard labor and other distasteful tasks that I would really deep down rather not do?

Would I have to give up my extended leave of absence from work, which has taken so much time and paperwork to obtain? As it is, I have wrangled out for myself the permission to work a short day every Thursday, and the right to use special time for illnesses or doctor visits (EIT) instead of my own coveted vacation time (PTO).

Are you saying that I would have to work a full eight hours again? Every day?

God forbid.

Let us be careful, therefore, lest we fail to appreciate the good fortune bequeathed upon us by disease—received through none of our own doing, but by grace. So to speak.

Monday, October 27, 2008

Lost In Translation

If you have ever thought that multiple sclerosis is hard to understand, or to describe to others, try explaining it to an exchange student from Saudi Arabia.

Mamdouh has been living with us for about a week and I figured he must have noticed by now my halting gait, my general incoordination, my recurring moments of cognitive breakdown. I decided to tell him all about it over a cup of coffee at Starbucks.

This is where the trouble began. Lost in translation from the outset. I had hoped that the words multiple sclerosis, or even the initials MS, would have a sufficient world-wide following to count as a given, an automatic beginning, a linguistic springboard to a more complete comprehension--like the general agreement which exists with terms such as OK, or AIDS, or JLO.

No such luck. The utterance of these two words, as far as Mamdouh was concerned, might just as well have indicated that I had something stuck in my throat and was trying to schpit it out.

Next I tried the word disease. I believe he understood this word. But the grasp of meaning where one word is concerned, as I quickly realized, cannot have extended to an understanding of why I was sitting there pointing to myself and saying disease, disease. If anything, he was probably wondering whether he should get in touch with his advisor at the exchange program.

Forging onward, where any sane Saudi might have wisely opted for silence, I began to caress my own legs and ankles, explaining that I could not feel them (even, ironically, as I sat there feeling them). They are numb, you see? Numb.

Say that word enough times and pretty soon it doesn't even make sense in English anymore.

Did I give up? Of course not. It was time now to talk about my malfunctioning brain. Leaving my numb legs behind, I pointed to my head, sort of forward from the ear and toward the temple, as one would do in positioning a pistol.

I was not only continuing to fail in my efforts, but was doing better at it all the time.

I cannot say that Mamdouh ever came to understand that I have a disease called multiple sclerosis. I do believe, however, that he did at least come to understand there is something wrong with me.

Surrendering at last to the uncrossable gulf, I took out my pack of Camels, shook out two, and together we smoked, united at last in a fellowship of bad habit. Perhaps one day I will end up with a disease that is more familiar internationally and thus avoid all this trouble in translation.