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.

FUBAR

I guess maybe there comes a point in time where one has to acknowledge that he is fucked up in a general, irredeemable, intractable sort of way and just leave it at that.

In astronomical terms we may compare this particular sort of event horizon in life to that point at which matter--the earth, for instance--falls into a black hole, from whence nothing, not even light can escape. It makes no difference what effort is expended, no difference what means are used, nor by what thrust or twist escape is attempted, there is simply no way out, for the sheer gravity of the hole is nonnegotiable, supreme above all.

Most of us as we grow older yet persist in the strange notion that everything still is just as it has always been. I am still myself, for instance, just as I am and have always been, despite what the latest photograph depicts. How curious that I should appear otherwise. Perhaps the next picture will better capture the true essence. More probably, we simply pose for photos less often, knowing that the resultant image will be yet another unsettling lie, an unkind warping of light and feature. Obviously your camera lens needs to be cleaned, because that, my friend, is not me.

We are used to the idea that maladies are merely temporary things, exacting a period of discomfort, but then passing on their way. We recuperate, maybe go to the doctor, get this or that fixed, take this or that pill, and then live again, like a boxer down for three or four counts, then on his feet again.

But what I'm talking about now is the pain that comes and stays, the broken thing that stays that way, This is the black hole that swallows light, the prognosis in place of the cure.

I remember when my father was suffering with cancer. It was a cancer that started in the gallbladder and spread out from there, like spilled ink, oozing and saturating all, to bladder, to stomach, to intestine. He had in his lifetime suffered as many troubles as most--nor more or less afflicted than the next guy--the flu, a bout of pneumonia, a problem with his spine, a stomach ulcer, a fall from a ladder. I believe that he thought this was no different. One must simply take the necessary steps toward cure and recovery. He would see the doctor, he would undergo a surgery--and if that didn't work, he would see another. And all the while--and a short while it was--we observed the obvious process of death, parading through his body, his face, his eyes, with all of its black flags flying.

How could he not know, I wondered? How could he possibly imagine that one more visit to the clinic would turn the tide?

This is the terrible gravity of finality that beckons from the maw of the black hole in time. This it it, the last word, the last dot. This is the sentence that has come to its end.

And we cannot bear to look.

I am no different than my father, and we are no different than any other man, old or young. The time is never now, and the cause is never lost. We go on. There may come a day, but the day is not now. It will never at the present moment be now, but will ever remain beyond the border of the lens, outside the edge of the print, not yet part of the picture.

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)

What a Friend I Have in MS

All ye MS sufferers, please don't fail to appreciate the honorable character of your disease, for there are some diseases, some misfortunes that seem downright stupid in comparison.

Take E. coli poisoning, for instance. I happened to read this morning in the New York Times about a young woman who had been paralyzed by a hamburger. Seriously, it is so. The hamburger she ate one carefree sunny summer's day was tainted by E. coli, which not only made her sick as a dog, but paralyzed her for the rest of her life.

Just imagine trying to convey that to the person who asks after your sad condition. Was it a car wreck? A fall from a cliff? A cancer, a neurological disorder?

No, it was a hamburger.

Not only is it a stupid sounding illness, an embarrassing sounding condition, but it also could have been avoided.

If only I had not eaten that hamburger on that carefree sunny summer's day.

Such a result--paralysis--seems wildly unfair, ridiculously harsh. How much better, how immeasurably more honorable to say that you were struck down by an autoimmune disorder, and to point to the culprit, multiple sclerosis, as if it were a well known fire breathing dragon.

Ours is a disease with a clean reputation. It starts on the inside and needs not first to be consumed. It does not crawl or wiggle or worm. It is mysterious, elusive, ever partially unknown, like the Lone Ranger or the Phantom of the Opera. It can stand with the best of them, and hold its head high. And by it the sufferer is faultless, a victim in the purest sense.

Therefore, honor your disease, and be proud, for the testimony of innocence testifies in our favor.

On Our Way Up to Canaan Land, Part II

The sense of all this, as applied to the life of the individual, is intended to be an illustration of how close we are, all our lives long, to the realm of peace, freedom, abundance, and rest otherwise symbolized in the Old Testament as The Promised Land. In the New Testament it is called The New Jerusalem.

My Kingdom is not of this world, Christ says. It is in heaven. Heaven, in fact, is not of this world, and yet it is in this world. It is as near as a breath is near to the lips (the Greek for heaven being often translated as breath).

But if I cast out demons with the finger of God, surely the kingdom of God has come upon you.

Since the representatives of religion had accused Jesus of casting out demons by the power of Satan, they made it implicit in their argument that they believed a supernatural power to be at work in Jesus. He had only to finish their own argument to arrive upon the truth--If Satan casts out himself, the how will his Kingdom stand? But if I by the finger of God . . . and so on.

How will the Kingdom of heaven come? So asked the ever obtuse disciples, always so perfectly characteristic of mankind. Will it come by war? Will it come by force of arms, by the crowning of a new King, by fire and destruction, by civil war or revolution?

Not by revolution, but by revelation--and revelation by crucifixion--the overthrowing of all things, a surrender to death itself so that new life may rise.

Unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain.

So it happens that in a world made of illusion and delusion, of pride and arrogance, of lies and conceits and fear, that our eyes are able to open and see very often only through pain and sorrow, through a series of mini crucifixions. We follow the Lord whether we like it or not. We follow whether we intend to or not. For this is life, pure and simple. One cannot live unless he dies, and truly we die daily, as the apostle Paul pointed out.

The core of life itself is composed of irony and paradox. Disease becomes a miraculous setback. In disease the weakness of the flesh is concluded, the pretense of power in the flesh is revealed. We fall back now upon what? Upon what is not flesh but spirit, what is not of this world, but of heaven. Disease becomes a key to health, a map which shows the short way to Canaan. We are not eternal, as we had thought, or had liked to imagine--and yet we see, though through a glass darkly, that something is, and always has been.

This is the blessing of infirmity, the glance afforded through the rent in the veil.

And we begin to hide our eyes no longer.