Back to MS for a Minute

Given that Jim Dandy was just recently nominated as 'Best MS Blog" and granted a spot in the Blognation directory, I suppose I ought to post an entry that has something to do with MS for a change.  The fact is that in hte last two years or so I've written very little concerning MS, preferring to write mostly about my experiences here in Bali, my family life, political and religious matters in Indonesia, and so on.

Why is this?  Am I suddenly MS-free?  No, of course not.  I'd like to say that I am -- that the combined lifestyle balm of retirement in the tropics, the sunshine, and sea and surf have been somehow curative, but that, sadly, would not be true.

I guess the reasons for my comparative silence are multifold.  For one thing, it just kind of gets old.  MS gets old.  Like so many things in the world, at first it is new and interesting, there is an acquaintance to be made, learning to be done.  One suddenly has a new life, unplanned for and unasked for, yet nonetheless new.  There are a lot of questions to be answered.  What does this mean?  Who am I now?  What can I do?  What should I do?  One becomes rather consumed in all the details, feeling his way forward, making new acquaintances -- people one would never have met had they not been sick.  But then the years pass and things settle in and the situation becomes the status quo.

MS becomes normal.  It's the way it is, the way I am.  You become accustomed to the various deficits, at least in some degree -- the aches and pains, the numbness and tingling, the confusion and disorientation.  You don't really remember being without them in any more than a very detached way.  How does disease remember good health, and to what end, what purpose, resulting in what meaning?

We simply move on.  There's no choice, really -- unless you want to count a life of moaning and complaining as a choice.  We move on in our own wobbly, stumbling, disoriented way. We are our disease, as surely as we are blonde-haired or blue eyed, woman or man, handsome or homely, old or young.  We did not choose, but were chosen.  MS does not define us, yet it does change us, both outwardly and inwardly.  It is the ultimate character of change that lies always within our command.

Twitching

Strange experience of late with Ambien. See, I have this deal going on where my body wants to twitch and jump around in bed all night. No partner, mind you--just me and my body. It is rather like restless leg syndrome, but of course it's not, it's multiple sclerosis, and therefore the drug commonly prescribed for RLS, Requip, does not work. For this reason my PCP prescribed Ambien.

Now here's the weird part: One or two Ambien tablets will knock me out within perhaps ten minutes; however it proves to be a sure thing that I will then wake up at about 3 o'clock in the morning and find myself completely unable to go back to sleep. Absolutely wide awake, only tired and exhausted. Can you imagine it?

So it is that I've been knocking about since 3 a.m. I find that there is not a whole lot to do at 3 a.m. Ones friend are of course asleep, as is ones wife, even ones dogs--although I will give credit to Smokey for staggering out to the dining room briefly just to see what the hell was going on.

No one I know is online at 3 a.m. (although someone named Sexy Mandy wants to chat on Yahoo).

Finally 6 o'clock rolls around and I head for Starbucks to have the first of what will likely be two dozen cappuccinos. Now everything about Starbucks is wonderful as far as I'm concerned, except for the music. Why must they have loud music playing, generally music with a jittery, Latino sort of beat. Do I need this? What is the purpose? Am I to be happy because of this upbeat music? Is this any way to wake up? For God's sake, I'm already on edge here folks!

Sooo . . . I think a doughnut would do nicely just now. Along with another coffee.

Life is a funny sort of business. It's also the only business out there. Every cloud has a silver lining. And every silver lining has a cloud.

Clean It Up

As most of us are now aware, the new idea vis-a-vis MS is that it may actually be a vascular malfunction rather than an autoimmune disease, and that cleaning out blocked arteries may be curative.

That's all well and good--but what I'm wondering, along purely practical lines, is how one might do this at home, rather than face the prohibitive expense of hospitalization and surgery.

I'm wondering if a toothbrush will work, and whether one should apply just the bare bristles, or maybe add a mild soap, such as Dove or Ivory. The fact that Ivory soap floats may also be pertinent (although I don't know how).

Would this be a cleaning or a scouring. Another question without an answer thus far. If the the preferred method is the latter, would this call for a pressure washer, or something less intense, like a water pick?

How to get at the arteries in the first place? This is a major difficulty, and could quite possibly be a deadly one.

One thing I know, however, is that anything that can be done in a hospital or in an auto repair shop--at Les Schwab or at Computer Geeks--can be done in one's own garage or den. My father taught me that. It may take more time, it may be messy, it may cause more problems along the way than you began with--but in the end you've accomplished the thing without the help of the so-called experts, you've done it at a fraction of the cost, and you can walk away with the sense of personal self-sufficiency that you can't get anywhere else.

After all, a handful or arteries can't be any more complex than a carburetor, now can it?

Exciting New Research

Cutting edge research (my own) in the field of medical science has shown that multiple sclerosis, a disease long thought to be caused by a malfunction in the autoimmune system, actually has more in common with sinusitis. In short, it drains.

I know this because my case of MS, having formerly been most evident in my brain, has now drained into my left leg, such that my familiar cognitive difficulties (one might say congestion) have wholly cleared, while at the same time my left leg has become stuffy, sluggish, and painful.

My research will now enter the hands-on phase of experimentation, which, as always, will be less than thorough or logical. I think of the nose, the classic target of sinus problems. I think of Neo-Synephrine. I think of the nature and course of the common sinus infection, and then expand the general mechanics to the body as a whole. I think of injected Neo-Synephrine. I wonder if the ingredients of Copaxone are actually the same as those in Neo-Synephrine.

As is readily evident, the matter is a complex one and will require much time and energy on the part of the research team. Since I am so far the only one on the team, and since much of my time and energy is devoted to being generally exhausted, any forecast of applicable conclusions, along with potential treatment modalities, is bound to be years away. That's the bad news. The good news is that we finally have this tiger by the proverbial tail.

And so I shall proceed--patiently, tirelessly whenever I'm fully awake--and in the meantime spraying and blowing, spraying and blowing--all for the good of mankind, and women too, and children, and especially for those of us who suffer from this sinus-like syndrome.

(anyone desiring to join my team may do so simply with a reply and the purchase of any sort of decongestant)

The Return of My Brain

My brain is back. I don't know how it happened, what I did, or did not do, but suddenly here it is, thinking, functioning, remembering, all as clear as a bell.

At first I thought this was maybe just some weird trick of perception--like the way an amputee feels a missing limb--but it cannot be so, for the organ proves itself in performance. The other day, for instance, my wife told me a phone number to call, and even though it took several minutes to go and find paper and pencil and cell phone, I actually remembered the number immediately and without flaw. I was astounded, amazed at the utility of the thing. I wrote down the numbers and read them back to her, just to be certain, as if to prick myself with a pin.

Am I dreaming? No, by God, it's real!

Not a month ago, had we been driving in the car together, my wife would have had to direct me from start to finish. Left here . . . straight now . . . right at the next traffic light. And yet now this sort of guidance, helpful--no, essential--before, has become suddenly acutely irritating, such that old objections return to the pilot's seat as if they had never released the throttle in the first place--I know, I know; you don't have to tell me; I've been here a hundred times before!

Surely I sleep. Surely I dream. Surely I have received without cause or merit. Shall I rejoice now, or tremble at the thought it might depart once again? Shall I tell people about this, or shall I be silent, careful of words that might shatter the gift? Can I trust my brain to stay, or does it whisper but a moment like a ghost, an echo, and arch wings of flight even as I speak.

And if it stays, then what I am to do? What to make of this brain? How should I live for having received this unbroken thing thing from the abyss?

The Measure of a Man

Okay, so maybe I ought to write something. It's an important day, after all. New Years Eve, 2009. It's some kind of a significant hallmark, or must be, I'm sure. There is a big difference between 9 and 10. Can anyone deny it?

Then again, I am less and less an observer of days, as the apostle Paul put it. And that's a good thing, right? Attaching a significance to numbers is tantamount to witchcraft. Right? Superstition, magical thinking. Be ye not conformed to the patterns of the world, for the world is passing away.

So it is, so it is.

I remember spending quite a long time on this subject last December 31st--the passage of one year to the next, that is. It seemed a natural time for rumination, summation--an accounting, a valuation, an appraisal of where I had been and where I had ended up. I was still fairly new to MS (funny how you can become old to a thing in the space of one year's time), and my feeling at that time was that the disease had changed me in some essential way, that it had become central in self conception. In short, it seemed important.

And so I have changed after all, now that I think about it--for MS no longer seems very important, or particularly pertinent, or even particularly interesting.

Why had it seemed so on December 31st, 2009?

Recently I watched a movie where aliens had come to earth and got stuck here (their ship broke down). These were a lizard like people, and not good for much--unusually stupid as aliens go. By and by, the main character in the movie (a human) became somehow infected and began to turn into a lizard himself. What was alien became little by little part of him--he sprouted jagged scales, claw like hands, a weird looking yellow eye. The infection, as it seemed, grew from within, like a cancer perhaps, or a leprosy, so that at last our hero had shed his human appearance altogether and had become quite fully one of them.

What was he in the end? A man trapped inside a lizard, or a lizard which quite incidentally had once been a man? Is this how it works: We are what we become? A lizard without recourse learns to live in his skin, for he is what he is. What would be the point of outrage?

Lizard like, I slither therefore into 2010--unaffected, unsurprised, all but unaware. One thing only do I note as new: An intense desire to find a new abode, in a hot, dry, humid land.

Skating Into the Holidays

Learned a rule of thumb yesterday. If you have MS, and can't walk very well to begin with, don't take up ice skating.

Now, I am not new to ice skating. I used to ice skate quite often. When I was 12. My wife thought this would be a fun sort of holiday thing to do. And I figured it this way (always inclined toward the positive viewpoint): Even if you have trouble walking, ice skating ought actually to be easier, because the ice itself will move your feet--you will be sliding along rather than walking. Kind of like swimming--wherein, of course, you simply float.

Well, it's not so, folks. That's the honest truth. I was in fact surprised at how very weak my legs and ankles have become. All that wobbled to begin with now shook and shimmied, and all the while ached in protestation. I'm sure I must have looked like Elvis in the Ice Capades. Oh yeahhhh, I'm all shook up.

But it was fun, I'll have to admit. And my wife certainly enjoyed the show.

Pensee

Funny thing about Pascal's Pensee--no matter how many times you read it, it remains almost wholly unread. This may be partly due to the abbreviated nature of much of the material--a jotting down of notes and reminders, suggestions and hypotheses. One finds himself included in the author's thought process, filling in, groping forward, linking this which is partial to that which is more fully developed. Because of the spaces we become in a certain way more fully involved. The picture takes a more vibrant shape because of the fragmentation itself. Curious experience.

Well, this week, once again, I am sick with the cold. Seems like I just got over one. I guess that's because I did. Great year for colds, 2009. And I am indescribably fatigued.

I have heard it said before that a person with MS is less likely to become sick with common illnesses because the autoimmune system is overactive and thus attacks actual invaders as energetically as it does the healthy systems.

Wouldn't it be pretty to think so.

But as is often the case, what seems neat in theory often fails to play out in practice.

Thus it happens that I have heard it said also that people with MS are more likely to suffer from common illnesses simply because the body is worn out and haywire, and the overactive immune system does its intended job just about as well as a fence made of Tinker Toys.

(my apologies here--because I could not think of a good simile, I used Tinker Toys).

The fact is, those with MS eventually die not because of MS itself, but from some other illness they might otherwise not have succumbed to if not for the MS.

(weird sentence ... like I said, I'm tired ... so shall I desist for now).

I Promise

The next morning my wife asked me to help her with a couple of cuff links--small little things that were to be threaded through the eyes on her blouse cuffs and then snapped snug at the wrists.

Try as I might, I could not accomplish the task. Every possible conspirator conspired against me--my fading vision, my shaking hands, the numbness in my fingers. She may as well have asked a camel or a giraffe to do the job.

Frustrated, she dismissed me, saying that she would do it herself, as usual.

I was feeling kind of low after that, and so by and by I returned to the bedroom to see if I could try again. I found her sitting on the bed, shoulders shaking, a teardrop rolling down either cheek.

And so I knelt by the bed and hugged her. I just stayed there and hugged her.

Why do you have to be the one with MS?" she said, catching her breath, forcing back tears. Why couldn't it have been your crappy ex-wife, or one of her kids, or . . . just someone else?

Well, it's okay. It's okay. It could have been worse. It could have been cancer, it could have been heart disease. It's not so bad.

For you, she says, for you. But I don't want to be alone, I can't be, I can't stand it.

Her shoulders are shaking again, she can't catch her breath, she's holding on tight as if I will soon slip through her arms like a scarf or a cloud.

I did not know she felt this way. Somehow, I did not know.

And so I told her that I would never leave. I told her that I would live forever if need be. I promised her so, and a promise is a promise, an oath is an oath.

The rest is up to He who collects and cares for such things.

The Brain Buzz

One of the most unpleasant of the myriad unpleasantries associated with multiple sclerosis, for me anyway, is what I will call the brain buzz, if only for the sake of alliteration, and at the expense moreover of descriptive accuracy--for you see the phenomenon experienced is really more of a hiss than a buzz, though yet again not so much of a hiss as a hiccough tucked somewhere within the electrical pulsations at work within the gray blob otherwise known as my brain (itself more blob-like I think than most).


This, happily enough, is not a common nor an ongoing symptom, but one which arises at its own pleasure, whenever it will; and is, I believe, something that accompanies an active state of MS--a warning whisper, a rumor of war. It has become according to past experience my own diagnostic tool for identifying a relapse, just as reliable as the MRI, though much cheaper.

This buzz/hiss/pulse--this heavy breathing in my brain--comes along also with a sense of light-headedness and disorientation above the norm, and also vague nausea. Whenever this hits, I wonder first off what I can do about it, then remember that there is nothing to be done but to wait. It does finally go away on its own. So far, anyway.

I wonder if anyone else has this. It does seem that MS makes its attempt in each person to present an original character--so as to make each of us feel special, I think; and also to confuse doctors and frustrate timely diagnosis--and yet there are some common threads to be agreed upon--numbness and tingling in the extremities, for instance; fatigue; imbalance.

But how about the brain buzz in particular? Anyone out there feel me?

My Newly Discovered Potentially Healthy Diet

Another thing I decided after my MS diagnosis was that I should pay more attention to my diet. I should become conscious of what I eat. This is not to say that I have changed the diet itself, but only that I take more definite note of the things that go into my mouth and down my gullet. It has actually heightened the pleasure to be had in partaking.

We should all be more conscious of the simple things. After all, you don't eat when you're in the grave, but rather are eaten--which are two totally different things. In addition, one does not have the opportunity to be conscious of the latter (or hopefully so, anyway).

Whereas a hunk of ice cream covered with chocolate syrup seemed once nothing more than an indistinct blob, a matter of little purport on its own, the same has now become a miniature universe of untold wonders, such that I spend more time admiring the thing on its way to my mouth than I do with actually clamping down my jaws and imbibing. For this reason, I have begun to lose weight--what with the time spent on scrutinizing rather than swallowing--but that is all in all a good thing, as I could stand to lose a few 10 or 15 pounds.

When was the last time you truly watched as a butter horn, skewered just so upon your fork, arose from its plate to make its journey to your tongue--this elegant dance of cause and effect, intention and target, beginning and end (for the butter horn, that is).

Have you ever just stopped to purely observe what a pork chop will do when left to its own devices?

Food for its own sake--the very foundation of diet. To begin at the beginning is my maxim nowadays. Be the buttermilk cruller, be the buffalo wing. All the rest (by which I mean the dietary particulars as they pertain to good health) will fall into place by and by.

My Newly Discovered Active Lifestyle

The first thing I decided to do after being diagnosed with multiple sclerosis was to climb a mountain. Why? I don't know. I guess because it was there, and it just seemed like the natural response to being essentially crippled.

Curiously, as I flipped through the pages of various MS magazines, I found that almost everyone else having MS had already decided to do the same thing, and moreover had for the most part already done it. (I know this because there were pictures).

I determined therefore to not only climb a mountain, but to do so in the dead of winter, preferably in the midst of a blizzard. A blizzard of unprecedented proportions. And a hurricane on top of that, if at all possible.

Just now I'm still waiting for the proper weather conditions, and in the meantime collecting the needful supplies in anticipation of the day. Ropes, for instance, grappling hooks, a decent pair of boots, a stocking cap and ear muffs, mittens (naturally), a loaf of bread for a crumb trail, and of course my various medications, as well as candy bars and cigarettes. I figure the Copaxone will stay cold enough in the expected climate (which is good, because I certainly do not intend on lugging a refrigerator up the side of a mountain--not in my condition).

In preparation for the big day--by way of toning up, I mean--I have begun to look into the idea of marathon running, as I see (also from the magazines) that this form of endurance exercise, though seemingly quite out of the question, is actually quite common among MS sufferers--preferred, though only slightly so, above hang gliding and minor league baseball.

Who knew that a disease would turn me into a sporting fanatic? God works in strange ways indeed.

The Best Parts

"It would be nice to talk to the Bud we knew growing up, not the Richard guy whose wife and disease have taken the best parts of him."

So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.

By wife she means my third wife, the woman I am married to now. By disease she means MS.

I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?

But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.

We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.

Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.

We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.

But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.

Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.

And then change the subject.

Stuck In Old Lodi Again

If I could somehow predict the arrival of these intermittent days of heightened confusion, I would just stay home and do something less demanding--wash the dishes, or do the laundry, or vacuum the rug. Or sleep.

But their arrival is quite unpredictable, and moreover you don't even know your having one until you find yourself right in the middle of it. Suddenly you hear that familiar music. No point in adjusting your TV set--for you have entered the Twilight Zone.

It was my day off work, and my wife had given me a simple list of things to do, the accomplishment of which should have taken perhaps an hour, certainly less than two.

But folks, it took me the entire day, such that I finished the last chore no sooner than ten minutes before she came home from her own full day of work.

Much of this time was spent driving back and forth between my house and one location or another in order to retrieve whatever I had forgotten--the same item being crucial for the specific task at hand. This means arriving at the bank to buy money orders without remembering to bring the money. It means arriving at the postbox without the letters to be posted. It means taking three trips to the store in order to buy three items--0ne item at a time.

What have you been doing all day? she asks. I have heard this question so many times that they are far beyond counting at this point. She imagines perhaps that I have been sleeping, or maybe just sitting, or maybe watching TV. It seems quite clear to her that I cannot account for six or seven hours of my time.

And the truth is, I can't. Not in any reasonable way, not in a form of accounting that would seem even remotely believable.

So maybe I've been having an affair. Affairs take time, right? And they're much more fun than driving back and forth, over and over, within a radius of three square miles or so.

It is an answer that would fill in the blanks, that would seem to make sense, that would seem more satisfactory even to me. It's not the truth, and yet seems kinder somehow to the reasonable parameters of credulity.

Rest In Peace

So okay, I went back on the Copaxone. My wife made me. I suppose it's a good thing overall. For all I know, I had a relapse in the last couple months, what with all these various illnesses I've gone through, one after another--the kidney stones, the screwed up back, the weird abdominal pain, followed by the even weirder stinging skin. So much crap going on is bound to shake up the MS and have it bite back one way or another.

As it happened, my wife was paying the bills a few days back, and in doing so, it occurred to her that we were still paying for the Copaxone, even though I had quit the shots some weeks ago. She objected to this, predictably enough.

Well, I explained, I had already called the home infusion pharmacy with the question. What they said was that I needed to look at it this way: Say you bought a bottle of Tylenol, but you did not take all the pills in the bottle. You would still have to pay for the whole bottle, right?

The example did not impress my wife.

"That's BS," she said.

In any case, it was therefore concluded that if we were going to pay for the damn shots, I had better be taking the damn shots.

My wife is thrifty, you see, and cannot abide by waste of any kind. Money don't grow on trees, be those trees here or in Indonesia or anywhere else.

The familiar maxim is reasonable enough, of course. My own father used to say the very same thing. It does occur to me, however, that this is something, as are most things, that could be taken to a deadly extreme. It is for this reason that I will refuse as long as I live to purchase anything in advance toward application at the time of my death--a coffin, for instance, or a burial plot--for it might be decided that such investment of otherwise usable funds ought to be put to more immediate use.

Killed Instantly

He/She was killed instantly.

One often finds this phrase used, in newspaper articles, television news, or in simple conversation--a phrase that is punctuated somehow with a sense of deeper implication. It has a certain ring, something that demands a bit more air. Killed instantly.

Why is this significant? Did the deceased have insufficient time to enjoy his demise? Or perhaps it is the survivors who have been short changed by brevity--no time to weep or bring flowers, no time to devote to the passage, and then deposit for later use in fable, in autobiography--all the stuff that constitutes self image.

I should have thought that being killed instantly would be pretty easily preferable to being killed slowly and painfully, with plenty of time to appreciate the process.

Then again, perhaps deep down--I mean really deep down--the truly regretable thing about the instantaneous nature of this sort of departure is that it robs the stricken of one last chance for self-examination, of viewing life for once with an objective eye even as the light of the eye dims, to think of things unthought since the silence of the womb--life, spirit, soul, God.

I find at least the latter possibility appropriately touching.

Rituximab, most often associated with the (generally unsuccessful) treatment of cancer is now being talked about more and more in connection with the treatment of MS (as well as a handful of other innocent diseases). It is, they say, exciting news. The good news about this particular drug is that it is not very likely to kill instantly (although it is certainly possible). The thing about chemotherapy (i.e. the use of toxic chemicals on the vital systems that sustain human life) is that it's a process, as is made apparent in the therapy part of chemotherapy.

These things take time.

I read this in an online description of Rituximab, which may or may not be pertinent:

WARNING: FATAL INFUSION REACTIONS, TUMOR LYSIS SYNDROME (TLS), SEVERE MUCOCUTANEOUS REACTIONS, and PROGRESSIVE MULTIFOCAL LEUKOENCEPHALOPATHY (PML)

Hm. Kind of gives a guy pause to think.

My Skin Hurts

I finally figured things out yesterday. Yes, a word of wisdom came to me from on high, like a dead bird falling on my head, waking me from the slumber of self-diagnosis, snatching me from the labyrinthine avenues or organ systems, the circulatory maze of physiology.

What is MS and what is not?

And the survey says . . .

If the thing is weird, if it defies reason, if it will not choose an organ or a bone or any other malady known to man, then it is definitely MS.

I had been suffering a sharp pain that seemed to be deep, and quite focal, just under the left side of my ribcage. Yet, before I could really begin to properly enjoy this, it began to bounce like an echo back and forth between abdomen and back--hello, hello, hello, and so on.

Hm, that's kind of like a kidney stone, I think.

Ah, but the thing will not be pinned to any such determination. As if fearing discovery and capture, it flees yet again, leaping dolphin-like from the deep to the surface, exploding there and spreading, from sternum to backbone, from hip joint to nipple. Now it is not a fish, but a fog. It is nowhere in particular, it is everywhere in general.

And it hurts when I touch my skin. It hurts even when my shirt touches my skin. Which, of course, is always.

Stupid? Yes, of course it's stupid. It's MS!

Now MS, as most of my particular fellows will agree, does not like to be lonely, and must therefore bring along a companion. In this case, my case, this time around, it has brought along fatigue. Profound fatigue. You know what I mean. The kind that makes you feel like a puppet without a hand. I continue to work my eight hours, and yet they seem like eight days. I plod along at my desk practically forever, and yet only ten minutes have passed. Something strange has happened to time. It has been stretched like taffy, long enough to circle the house several times. I sit for a moment on the futon with the chihuahua and wake up a half hour later wondering what happened.

This is MS, no more questions, no more mystery. It is the illness without a medicine, the organ without a name, the secret bodily system that has no palpable presence and yet is completely and comprehensively there.

Shall I call the doctor? And then what shall I say? My skin hurts? And it's exhausting me?

Shall I take a pill? What pill? Arsenic? Cyanide?

Well . . .

The good thing, as always, is that this is hilarious. And laughter is the one thing that does not make it hurt. It is, in fact, the only medicine so far known to soothe.

What Is and Is Not

What is MS and what is not? I know, I've asked the question 100 times already, and I presume that I'll ask it 100 more.

Take my recent back troubles, for instance, and the consequent difficulties with walking--caused by a compromised nerve complex, or a thing that is just simply itself, a bad back, a sudden movement positioning a particular disk such that it happens to sit on top of a nerve when I rise? Which was the actual cause?

Consider moreover the totally unreasonable amount of pain I have suffered since. Has the severity of the pain been exaggerated by MS as the already rickety central nervous system seeks to address the problem, or did I just really mess up my back this time around, without any contribution from MS whatsoever?

Why is this keeping me down twice as long as it had ever done before? Is it because the central nervous system has become less able, or is it because I am 10 years older?

And now there comes this strange pain in my abdomen. It is in the right upper quadrant and it is quite localized to one spot, as if a knife had been stuck up under my ribs. It is constant, and it wakes me at night (and yet it is bearable, unlike the pain that accompanies the passage of a kidney stone). I wake to find the pain bouncing rhythmically between my abdomen and my back, as if the devil was playing a game of ping pong with one of his demons.

What can this be?

Looking at my copy of Grey's anatomy, I find a big purple organ called the liver crouching lump-like in this very spot. So is this a liver problem? Then again, I am aware that right upper quadrant pain is often associated with gallbladder disease. So maybe that's it. Then again, maybe this is referred pain from the preexisting back injury.

Or . . . well, maybe it's MS.

How to sort the thing out? How to find the culprit's secret cove?

As I have generally done in the past, I decide once again that it may be more accurate to envision MS not as the causation for most problems and pains, but as an underlying predisposition toward trouble, the fatal crack in the foundation that has weakened every element of the dependent structure. It is, perhaps, that which potentially compromises every other function.

And it is MS which in the end makes its mark of finalization on the death certificate. Whatever the fatal process was, we find almost without fail that MS had its finger in the pie.

Complicated by, is the phrase. Chronic obstructive pulmonary disease, complicated by multiple sclerosis. Myocardial infarction, congestive heart failure, pneumonia, endstage kidney disease, cirrhosis of the liver, and so on and so forth, name your favorite, but don't forget to add that final punch line--complicated by multiple sclerosis.

If multiple sclerosis is found to complicate even death, is it not perfectly reasonable to presume that it has complicated everything else leading up to death?

Life Insurance, No Platonics Allowed

Surprisingly enough, I was actually surprised when my wife told me that the company to which she applied--for which, in fact, she works part time--would not cover me for life insurance. Yes, because of my preexisting condition, multiple sclerosis.

Why was I surprised? I mean, everyone has heard of this kind of thing before, right? And yet it had somehow remained a rumor, the sort of conspiracy theory that circulates through society in a casual sort of way, the bit of gossip that cannot really be true.

After all, it is those who have a health problem who need insurance most, is it not? It just seems like a no brainer. The very purpose of the thing should have chosen its own most likely clientele. Surely it is not set up so that the person who is perfectly healthy is the same who may get lucky by dying, and therefore collecting for the benefit of his family. What, after all, does the deceased collect other than his own investment, and the investments of others having the same interest? Or did the insurance company put up its own money from the outset? No, of course not.

Here, as it seems, is the perfect example of a society completely untethered from the notion of community. It is a practice of greed, gainful for the few--a premeditated insult to the rationale behind its own existence--the notion of man's responsibility to man, the moral acknowledgement of interdependence.

Plato, in The Republic, imagined a society in which each member was called in his own natural way toward the ultimate logic of coherence and mutual benefit, so that the society itself would thrive, becoming intention in action.

As it happened, Plato never visited America. Can you tell?

Brand New Disease (Come as You Are)

I think I am suffering from RWB. The disease is so new that they haven't named it yet. other than to apply a few random initials (signifying nothing in particular at this point). In fact, so new is my disease that it has yet to develop any identifying symptoms. But they're out there somewhere, believe you me.

Is the disease fatal? Dunno. Is there a cure? Dunno. Will I be able to continue living a full and happy life, to climb mountains, to sky dive, to have grandchildren while I'm apparently yet too young to make it realistically possible? Most likely. Although frankly that doesn't do much for me in the way of consolation.

Yes, I am inconsolable--and I don't know if that is a symptom (the first) of the ailment, or merely a reaction to the same. Where does the illness end and what is merely ill temper begin?

Although it may seem a bit hasty of me, given the lack of knowledge concerning RWB (both general knowledge and any other sort of knowledge there might be), I have determined to start a foundation in my own name, being after all both the first to suffer and the first to speak out. In doing so, I hope not only to collect funds for research and treatment (and other peripheral expenditures, see small print below), but to encourage others, those who silently endure, to come forth, to own their disorder, and to buy a tee-shirt or a hat or both.

How does it feel to be stricken by an unknown source, to struggle with an unnamed bodily system gone bad--to endure, at least in potential, every unspecified pain known to man? To suffer, perchance to die, from God knows what?

Well it don't feel good, I can tell you that much.

MS used to be enough for me, but no more, no more. It is, for one thing, at least one letter short, and we all know that tragedy comes in 3's. Why stop at MS? Does anyone honestly imagine that he will get off that easy? No, the very notion is a delusion. But batten down the hatches, folks, make fast the gates, gird thy loins, for there is much, much more to come (although, on a happy note, this proves eventually no more than is required).

RWB is the cutting edge, bound to be as rampant in our century as consumption was in Frederick Chopin's time. And I'm getting on the wagon now, while there's still room to breathe,

Oh Brave new world. Oh brand new disease. Get yours while supplies last.

[the small print: all funds gathered, collected, stolen, or otherwise extorted under the auspices of the RWB foundation for the cure of Christ knows what will be wholly subject to the whim of the founder and utilized in whatever way is seen to be fit by the same, who will remain, in addition, perfectly irresponsible and unimpeachable)