Archive for November, 2009

Gardez votre sang froid

Saturday, November 14th, 2009

Everyone’s come a little unglued, and it’s become rather disconcerting to watch.

It all began last Sunday, when Marc, of AIT, sent the forum an e-mail telling us that Jasper had some abrupt and unscheduled business with the FDA and would be out of contact for a while. Suddenly I understood the reactionary response to the comment “We’re from the government and we’re here to help.” But if that were not dismaying enough, the very first response posted to the forum, from one of my brethren heretofore to be referred to as Pollyanna, was “this could mean that the insurance could start covering it!? right?”

Gird your loins people, this is going to get weird.

And weird it has gotten; as members and interested parties, instead of maintaining radio silence, sent along hare brained schemes for protecting ourselves from something we ought not need protection from. Making us look, once again, like a bunch of crackpots, Birthers and 911Truthers. I wanted to send Jasper a message. I wanted to tell him I understood and that I was ready to gird my loins, tighten my corset, do my part for the cause, if he was. But I wanted to keep my big mouth shut at the same time. So I chose, cryptically, to remind Jasper of a title he and I were discussing last summer for this very blog. Gardez votre sang froid, keep your cool.

As I understand it, Jasper got my message. . . He just didn’t get my drift. Later he replied that, nice saying though it was, he preferred “Fight the Power.” “And that is why”, I told him, “I sent the message in the first place.” One doesn’t engage a federal branch of the Pharmaceutical Industry with that attitude, or you will be destroyed. You will be made to leave the country abruptly, to where you will no longer be their problem and no longer be meaningful competition to big Pharma. Not that I am saying it was going to end up any differently anyway, but it might have bought him some time and kept his dignity intact. Yet I don’t know that Jasper is all that much concerned with his dignity. He is a different sort of a person. Just this evening he posted, under a post titled, of all things “Let’s all calm down.” that: “for the future, look at my past. I was made for this.” These are not the words of a man who is calm, or who thrives upon serenity. We can learn that from looking at his past.

That’s fine, the Buddha may not have risked his life in Africa scrounging about for an infection with the proper worms, then undertaken to cultivate them to help others. But impetuousness is not an easily honed knife, and it has nothing to do with all keeping calm. Futhermore, the comment “I was made for this.” is speaking from Ego, perhaps even speaking from Id, but it is not speaking from Superego. These are the words of a man pushed just past his limits, not one functioning squarely within the bounds of his comfort zone. This is a man who needs desperately to be cool, and can’t. I suspect he will read this and that I will go on the list of his bad clients, who betrayed him. He becomes emotionally involved, he can’t help it. I don’t want to alienate him. I did not want this to happen to him, he’s a good person, just a little bit clumsy about the interpersonal thing. On the other hand this time he is facing the worse adversary of his life.

What are we going to do about the FDA? The Bush administration turned it into a broken machine that eats its friends and suckles its natural enemies. It has become so polluted from drawing off the toxins of the industries it is supposed to be regulating, that it sees danger everywhere except in the board room and the corporate lab. The plan was, through underfunding and mismanagement, to make it a worthless shell of an organization; then point to its uselessness as the reason for taring it apart. And surely if the Ayn Rand wing of the Republican party had won another term, that is what would have eventually been done. Rather than that we are left with a flailing monster that wants to kill, I mean regulate, something but is woefully mistaken about what is fair game.

To wit, we may now buy glaucoma medication, although we have perfect eyesight, for the medical condition of spindly eyelashes. Because a side effect of glaucoma eye drops was eyelash thickening, a new disease was invented and promptly cured with the approval of the FDA. On the other hand we soon will not be able to eat Raw Oysters in the summer. A hand full of people get sick and die from them every year, a very few, five or ten. Concurrently, because cattle are fed corn rather than grass, a form of e-coli proliferates in their gut which kills hundreds of people every year. The oyster men, however, have a less influential lobby than the beef people and cattle fed on corn will never ever ever be made illegal or deemed a danger of any kind. These two are only the most egregious examples of what FDA regulation has come to mean, that I could pull off the top of my head. This manner of regulation has been going on for nearly a decade. Now they have decided that since Helmenth therapy actually works, it must be stopped.

If AIT is not a joke, it must be a threat. So Jasper and family flee in the night like the Israelites, while Pharaoh turns his back for a moment and pretends not to notice the subterfuge. Go, like the scores of offshore corporations before you, to a place you will not be a problem to Big Pharma or an asset of its many adversaries. Go perhaps, even somewhere you can scuba dive in January, but go and take you oysters and your cheese ripened for less than ninety days and your bad attitude with you.

We the beneficiaries of all these gifts of nature, Worms, bivalves, cheese, men with, perhaps, Asbergers Syndrom, will go though our mechinations to get what we need. It will will be more difficult and cost us more, but that is the point. At some point it becomes easier just to take the Surgery,the Humira, the Velveta, the man with out the guts and the idea,and forget an other option ever even existed. At least the FDA would have it that way. Deregulation is not and has never been about regulating ourselves. It is about having corporate entities regulate us, to their benefit and for their profit. The problem here is that Jasper is too much of a mensch, not looking to make a fortune off of his discovery, if he had a team of accountants, patent lawyers and an IPO, he’d probably be just fine. If he had a buy-out offer from Ross Labs, he most certainly would.

A river in Egypt

Wednesday, November 11th, 2009

When I took 1/6th of a percacette this morning I was distinctly thinking of Dr. M.’s comment Monday, that Crohn’s patients who rely on opiates don’t live as long as those who do not. On the other hand, what I was also thinking was “I can’t live another day like this,” chained to the toilet and to the bed, to the house.

We agreed, Dr M. and I, that having given N. Americanus its six months, until April, if I was not truly better in the spring I’d seriously consider surgery. I have been at this crossroads before, seeing the departure point of colostomy and saying, with relief, “Ah yes, there it is.” But then the certainty fades, perverse optimism takes over, and the idea is dismissed. But this morning, confronted by the forth day in a row of pain and swelling, boredom and discomfort, I am forced to admit that the past two years, infact, have been hell.

I feel like the frog in the pot.

As the water gets warmer I insist I am fine, every thing is just fine. It’s nothing more than a sauna, I can handle it. But a good attitude and a stiff upper lip won’t help you when you are boiling and the waters of ‘da Nile, are getting hot. It has become about time that I admit to myself that I can’t handle it. The only reason that I’m still standing here in this pot is because I’m stuck, and never mind the smile on my face.

Furthermore, it is one thing to insist upon not regretting the loss of year or what could not be helped; it is an other thing entirely to loose years to stubborn denial. Yes, I hope N. Americanus works, but come April I will do my best to be emotionally ready for surgery. I will endeavor to practice, along with optimism, acceptance and the relinquishing of self delusion.

Climbing Down Everest

Wednesday, November 11th, 2009

10/31/09

A friend said, not long ago, that she’d assumed I’d been sick all my life.

“No,” I answered with some surprise; “I was a perfectly well person until I was thirty.” Even then, Crohn’s disease was less than a minor inconvenience for several years. Which is to say, I was fine when I climbed this mountain, now I have to find the strength to climb back down.

All my young life I expected to be a traveler, an adventurer; I got a BA in Anthropology primarily to learn about the most remote places and people in the world, before I visited them. I dreamed of standing on the plains of Kenya, watching the Wilda beast wandering by, walking the electrified canyons of Tokyo, eating locusts and guinea-pig in Guatemala. But it never happened. I squandered my twenties, in all honesty, so I can’t blame everything on the disease, but I will tell you this: I do not look at the adventuring class with jealousy. I have my own road to walk and it is as grueling as a trek across the steppes of Mongolia. And although I will not achieve fame or notoriety for the struggle I face every day, no books will be written about me, or movies made, I understand that living this is a feat equal to any adventurers struggle. I wanted a test of my character and I got one, the scenery is not so spectacular, agreed, but the oxygen level is so poor at the top of Everest that, I have been told, it’s rather difficult to appreciate the surrounds. Then having climbed, you are nothing more than another statistic, without having retained the strength to climb back down.

I don’t even know where I am on this mountain, this trip came with out a map or altimeter, the cloud cover is dense and I can’t see a god damned thing.  But I feel as though my oxygen canisters are still full and for the next while, at least, I’ll be alright.