My Little Corner of the World

I had the strangest experience this morning, which of course will be difficult to describe, as are all things concerning the crap MS dishes up.

I had gone out as usual to drive my son to school--generally an automatic sort of thing, you know? Not something one really thinks about, but just does.

And yet as soon as I turned onto Prescott street (3 blocks or so from our front door), everything suddenly looked wrong, out of place. It was a weird sort of spatial rearrangement, like everything was tilted, or had been shifted during the night, so that the streets seemed to be pointed more to the North than to the East, where they used to be. Everything seemed jarred loose from the familiar pattern, cross streets too acute in angle, buildings and houses displaced. It was a little bit like being on LSD, minus the feeling of euphoria.

Things looked so wrong in fact, that I was not sure I was going the right way. I found myself concentrating, watching for familiar landmarks, having to convince my mind that this was the proper route.

This disorientation persisted all the way to school and all the way back home. My mind continued to entertain two opposing perceptions--first that everything looked wrong, and secondly that I knew it was right.

I cannot help but feel, even as the confusion of perception fades, that this has been merely a peek at the world to come, a world where disorientation arises more and more frequently and the confidence of awareness looses ground. And it is a terrifying scenario, against which I ultimately have no defense.

It may be that my recent trauma with kidney stones and surgery has caused a relapse in MS. I note also a new aching in my legs--the same sensation that has long been present in my calves, but now having jumped to the backs of my thighs as well. It is an aching and a spasticity, as if the muscles had been tied in tight knots that cannot be undone.

So what do I do? Go back to Copaxone and add more kidney stones to my miseries as well? It doesn't seem like much of an answer to me.

Maybe there is no answer. Probably, rather. We are inclined to believe that every malady has a cure, that there is something we can do about this. All it takes is a call to the doctor, or more exercise, or a better diet, or 8 cups of water a day. We believe it to be so, even as we know it is not so. We believe it, because the alternative is unacceptable.

The Daily Drift

I went to Starbucks this morning, as I do most every morning, to sip a cappuccino and scribble down some thoughts (in as far as one can scribble on a laptop--it becomes more a figure of speech). The things that were needful for me to bring along were as follows:

1. My laptop.
2. My cigarettes.
3. Whatever book I happen to be reading.
4. My personal grande-sized cup.
5, My cell phone.

Now, despite standing around in the doorway making sure I was equipped, and despite coming back from the front gate to get my cup, I nonetheless lacked the following items upon arriving at Starbucks:

1. The cord for my laptop (the battery for which is quite useless).
2. Whatever book I happened to be reading.

In addition, there was a hospital bill I needed to call about, tucked into whatever book I happened to be reading, and so of course this too failed to make the trip.

Therefore, I was left with essentially nothing to do at Starbucks other than drink my coffee. (Imagine that).

I swear to God, no matter how often this happens, it continues to surprise and amaze me every time. How can it be that such a simple list proves so challenging? It is a theme with me, and there are variations on the theme, but the tune of the piece is always the same. One day it is the laptop itself that does not make it, another day it's the cup or the book. It's like a CD that always skips, but skips in different places, quite randomly.

This is my brain, a damaged CD, playing whatever music it will, but rarely the whole cut start to finish.

How is it that a creature of habit such I, can yet find himself so un-moored from what is habitual?

Oh well, perhaps it will become a blessing over time. A drifting ship must end up somewhere. I just hope it's on a white beach in Tahiti.

Is It Vascular?

Most of you out there who are really interested in multiple sclerosis (i.e. those who have it) will have heard by now about the new theory that MS is not an autoimmune disease at all, but a vascular problem.

In short, it is found in research data that 70 percent of people with MS will display spontaneous reflux constantly present in the internal jugular veins and/or vertebral veins, and 50 percent will demonstrate reflux propagated upward to the deep cerebral veins.

Put simply, this means that your blood is flowing in the wrong direction, Dude.

In the control group for this experiment (those not having MS), the percentage in both cases regarding the above parameters was zero.

This misguided flow of blood causes a number of problems; and specifically, in the case of MS, the wrong-way blood flow causes an insult to the blood-brain barrier, sending hungry little cells across into the gray matter and spinal cord, which soon proceed to eat myelin.

It's kind of like that zombie movie where the zombies were stuck on one side of a wide river, unable to reach the surviving normal people on the other--until, that is, they discovered they could simply walk across the river on the bottom (since they were dead anyway, right, and therefore could not drown and die again).

Did they hate the people on the far shore? No, they were just hungry--and so is the process that fuels multiple sclerosis.

The good news here is that this vascular defect actually appears amenable to effective treatment (unlike the various injected poisons now used for the autoimmune model). So start dialing up your doctors, folks, and make sure your insurance is in good shape. The business is about to boom.

Or . . .

Or is this just another wacky idea, the medical science version of snake oil and miracle herbs? They come and they go, don't they. And the longer you've been around, the better you know that.

Still and all, I'm game. I can't say that the surgery for this sounds pleasant, but I figure it can't be as bad as kidney stones.

And on a final note, I feel suddenly gladdened about my recent decision to stop the injected drugs, because for all I know at this point, I've been injecting this stuff all along for no damn good reason at all! I wonder how much damage this particular cure has caused already.

Well, I suppose I'll find out somewhere down the road--hopefully later rather than sooner.

In This Life, It Never Ends

I'll tell ya, folks--once they got ya down, they just keep on poundin', no mercy.

A year or so ago I had to assign all my old debts to an agency called Credit Solutions, because with the expense of MS diagnostics and treatments, I simply had no money to continue monthly payments. Herein the old credits cards are, of course, closed, and new interest supposedly does not continue to accrue.

Nonetheless, I have today received a summons to appear in court by one of these old creditors. They are suing for the amount owed plus interest.

They don't seem to like the idea of the credit solutions route.

This is disheartening, frightening, and stressful for me. The idea of appearing before a court as a deadbeat is not appealing. Where will the money come from? Am I supposed to stop all treatments, discontinue visits to the neurologist, forgo any further MRIs? Sadly, even were I to take those steps, there would still be no money, as we are still paying on the MS bills so far incurred.

Add on top of this the hospital cost for my recent surgery for kidney stones. I don't know yet what the insurance will pay, but the straight, unadjusted bill so far is $13,000.

It may as well be 13 million.

These are the financial, the morale effects that come with MS--those that lurk like storm clouds on the periphery of the day to day struggle--just living with the disease. These are the locks on the chains, the electric fences, the surplus in reality that says No, you are NOT going to be okay after all. Because of MS, you will be hunted not only by symptoms and relapses, but by poverty and legal action.

Life is hard, right? Life's a bitch, and then you die. We've heard it over and over, and yet somehow, deep down, will not believe.

From Physics to Fornication

I seem to have developed a lively interest in physics lately. This is actually rather odd, because I don't really understand the first thing about the science, and my reading of the books I have so far purchased has done amazingly little in the way of rectifying my ignorance.

I suppose the two major barriers to my comprehension are math and the counter intuitive nature of the science. Well, add in a third--logic--just for good measure. It seems that very often the compelling implications of quantum physics deteriorate before my eyes into mathematical equations--creatures which numb my mental efforts just as surely as the bite of a rattlesnake paralyzes.

It's like Man, this was just starting to get really interesting, and then the whole then collapsed into algebra!

My father was a high school algebra teacher. I was a high school algebra moron. No matter how I tried--and no matter how he tried--I just never could make heads nor tails of the thing. Many a night I yet vividly remember wherein I sat with him at the dining room table, hot lights blaring, textbook equations blurring, going over and over and over the mechanics of this inconceivable math, even as the TV in the other room whispered of more interesting pursuits, of what I, locked in the prison of numerical calculations, was missing.

My father was not the best teacher in the world. For one thing he did not much like high school aged kids. For another, he was missing the TV shows too. Perhaps he expected more of his own offspring (for, in later years, I happen to know this is how it goes with fathers). Sometimes, out of frustration, out of boredom, trapped within the exchange of self-loathing and vague thoughts of patricide, tears would begin to escape from my eyes--hot, tense, irrepressible tears, which I nonetheless hid (or hoped to hide).

Now, the image that enters my mind at this point, intruding in the most insistent manner--which I figure must somehow be inextricably connected to the subject at hand--is this:

When I was a young man I happened to enter the restroom in a public park. It was raining outside, and cold, and there was no one else in the park, or so it seemed. However, upon entering the restroom I came upon three men, somewhat older than I, engaged in a somewhat complicated homosexual act.

The first man, facing toward me, was standing, and his pants were around his ankles. The second man was bent over, facing the first man, and had the first man's penis in his mouth. The third man was standing behind the second man, and was having anal intercourse with him.

Upon the instant that I entered the restroom, all three men stopped--just froze stock-still--so that the event became, upon my observation, a single motionless frame--like when you press the pause button on your VCR. They were all connected, three yet one, like elephants trunk to tail.

What kind of physics is this? What kind of equation? How would one express it in abstract terms, in a numerical scheme?

Stupid, is it not? How in the world does this image arise, straight out of the maddening mix of math and science?

See Dad, I'm just as dumb as ever. In this I have not failed, from the past time to the present.

Is Existence Dependent Upon Observation?

Hel-looooooooo out there?

Biocentric Universe

Can we talk about something else now? The kidney stone is a very small subject indeed, and hardly worthy of the attention it has demanded--although I suppose it is ultimately not stature alone that commands close observance but the degree of effect that has been exerted. A mouse that roared kind of phenomenon.

Take the diminutive electron, for instance--a thing that cannot even be seen with the naked eye and yet stores in itself and its interactions the very motion of life. Electrons, as it seems, come in pairs, rather like twins, and these pairs of electrons interact in a sort of ying and yang style (not only twins, therefore, but husband and wife). It is found, through the odd, nearly incomprehensible science of physics, that if electron A does one thing, electron B must do the exact other.

Moreover, each individual electron makes choices regarding the determination of its own course. For example, if electron A, traveling as is its habit at greater than the speed of light, comes upon a tw0-way mirror, it will either pass through the mirror or deflect off the mirror, according to its pleasure. Whatever choice electron A makes, electron B will make the opposite choice. If A passes through the mirror, B bounces off. All outcomes are thus satisfied.

At the same time, however, as long as it is unobserved, the individual electron will remain noncommittal, preferring to make no choice at all. Or rather, it makes all available choices as long as it remains unobserved, and then upon observation, straightaway makes up its mind and trades in the vague for the specific. Anything and everything therefore that happens or exists requires someone to observe it.

Why is this important? It is important because what it seems to imply is that nothing in the universe actually exists without having been observed to do so. The very existence of the creation becomes thereby absolutely dependent upon the creature, namely man.

This is where the science of physics stops. Man is either utterly superfluous or comprehensively significant. It depends on which branch strikes one as strongest.

And yet I think of this as well . . . It is said in scripture that Christ is he by whom all things cohere and continue. And he is before all things, and by him all things consist (Col 1:17). And so maybe there is an observer after all, one who observes for all, who is holy and eternal (and so far unaccounted for by science).

It's something to think about.