Ordered South

I have discovered, quite suddenly, not only the most efficacious treatment for MS, but perhaps even the cure--

Just say no.

It sounds simple, I know. Too simple? Well, it's like one of these things that's right under your nose, hiding in plain site--although given the size of my nose, and the ample darkness cast thereby, it is perhaps not so very surprising that something so close has remained so elusive.

Yes, just say no, just say fuck it--draw the line, set your boundaries--and then move to Bali. The tropics, after all, come with a well known history of being curative for pretty much any and every sort of malady (except for leprosy). We follow, therefore, in the footsteps of Robert Louis Stevenson, of Paul Gauguin, not to mention a lot of other people whose names I cannot think of.

Place is the key, not medicine. They have no medicine in Bali (that I know of anyway). They do have a witch doctor, who charges, I think, beads rather than bucks--whose office is the last palm tree on the right, and has no waiting line.

The promise is so great, and we are all so easily led away when hope and memory are both in one story, that I dare say the sick man is not very inconsolable when he receives sentence of banishment, and is inclined to regard his ill-health as not the least fortunate accident of his life. Nor is he immediately undeceived.

"Ordered South"
Robert Louis Stevenson

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.

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.

The Missing Link

The mysterious blob which scientists recently discovered near the dawn of time is now suspected of being the cause of multiple sclerosis, a disease process which has long been a mystery as confounding as that of the blob.

No one knows exactly how multiple sclerosis originated, and by the same token no one really knows where the blob near the dawn of time came from. We only know where it is, roughly. It is for this reason that professionals in the fields of astronomy, science, and medicine have linked the two entities.

“It’s a first step,” one researcher commented, “and it’s major! Is there a cure in it? We don’t know. What we’re looking at now is questions, more and more questions, while the answers remain somewhat blurry.”

One might have said blob-like.

Although the indistinct discovery was originally given the name Himiko, after an equally obscure ancient Japanese Queen, it is felt now that whoever came up with this name jumped the gun. Given the relation of the blob to a known disease, by virtue, as has been said, of their common indistinctness, most who now study the phenomena feel that a set of initials would have been more suitable.

“We thought of TB (for The Blob),” one doctor said, “but of course those letters are already taken (tuberculosis). Himiko is unsuitable—the Japanese have nothing to do with it. We, after all, discovered the thing. And the fact that there are very few Japanese people who have multiple sclerosis removes them even further from being pertinent.” At this the doctor shook his head and shrugged a shoulder. “It’s something we’re working on,” he added, “and we will certainly keep the public up to date.”

Since the phenomenon that scientists are describing is being observed through a depth of space billions of light years from earth, it is readily admitted that the picture may remain a bit out of focus for some time to come. The disease multiple sclerosis also remains stubbornly out of focus, and so its link to the blob becomes more obvious yet.

Additionally, since the blob is billions of years old, it is believed now that multiple sclerosis, having clearly arisen from the inception of the blob, is also of a similar antiquity.

“It’s exciting,” said a spokesman at the Kennedy Space Center. “To think that we have all but proven that disease, that MS in particular, has been with us since the very beginning of time. The possibilities for research and discovery are almost endless. What about the dinosaurs? How about Cro-Magnon Man? How about primordial soup?”

No thanks, we might answer. I’ve already eaten!

A Matter of Personal Greatness

I do believe the thing that distinguishes me above the common man, above the lion's share of human beings, is my poor dentition; for it is practically incomparable, purely set apart, a sort of avant garde art work of weird spaces and angles. Each tooth is one of a kind. So, altogether, that equals about 5 of a kind.

I count myself on an equal footing with Lydwina of Scheiden, the 15th century nun who apparently still holds the record for the worst teeth ever, and who also, supposedly, had the first documented case of multiple sclerosis.

Nonetheless, I have a few years ahead of me, so we shall see whose teeth are worse.

Aside from being weird and dysfunctional, my teeth are also resistant to dentists. By this I mean that you cannot expect to fool with one without having something go terribly wrong. It's a domino effect. The greater the effort at repair, the greater the disrepair that results.

Last month I had a tooth pulled (well, part of a tooth--that's all there was). This naturally resulted in dry socket, days of exquisite pain, and a course of antibiotics.

Three days ago I had a root canal. This can be painful, surely, but it is something most people will get through without too much trouble. Yet I find myself once again distinguished by my teeth (or in this case a single tooth). Standing against the best efforts of modern dentistry, this lone tooth, having been rendered dead by the eradication of its roots, nonetheless has managed to strike back in the form of a gross and painful swelling of the entire left side of my face, such that I can actually see my face now without a mirror!

On comes the penicillin--an antibiotic which, as I am just now discovering, makes me feel rather nauseous. An antibiotic which also, apparently, has no effect on my facial swelling.

And here I keep swatting at something in front of my eye, forgetting that it is my own face.

MS and bad teeth. Which is worse? It's a toss up. I wonder if my teeth would be healthy if not for MS. I wonder, in fact, whether I would have MS if not for my teeth.

But this is a question for greater minds than mine.

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!

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.