Sunday, May 30, 2010

The world where you stand

Having reached that point in preparation for travel at which I am looking ahead at the day before the trip and panicking about the amount of work that needs to be done, I thought back on a passage from Moby Dick I'd just read.

Ishmael is preparing to sign on board the Pequod. Captain Peleg, the ship's owner, challenges Ishmael's rationale for setting to sea on a whaler, that he wants to see the world, saying, "Well then, just step forward there, and take a peep over the weather-bow, and then back to me and tell me what ye see there."

So Ishmael, taking him quite literally, does so:

Going forward and glancing over the weather bow, I perceived that the ship swinging to her anchor with the flood-tide, was now obliquely pointing towards the open ocean. The prospect was unlimited, but exceedingly monotonous and forbidding; not the slightest variety that I could see.

"Well, what's the report?" said Peleg when I came back; "what did ye see?"

"Not much," I replied--"nothing but water; considerable horizon though, and there's a squall coming up, I think."

"Well, what does thou think then of seeing the world? Do ye wish to go round Cape Horn to see any more of it, eh? Can't ye see the world where you stand?"

Good point.

It makes me wonder why I want to push off and go to Cleveland to begin with. We get comfortable here on land with everything just where we know it is.

Packing for such a trip is, in itself, a form of disruption. Suitcases out, selections made from among other things. The terror of failing to pack even one essential piece of Robert's gear. Let me think, all of the things I can't buy at CVS or a grocery store along the way: the specialized formula that is his source of food (pack extra in case we are delayed a day), his extension tubing, the enteral feeding pump, syringes of various sorts for medication and feeding, personal care items in medical grade sizes, his bottle of Sinemet, his Prevacid, the special bag sets for the pump!

And there must be something else, because you know there's always something that is forgotten on a trip. Right--the spare Mic-Key button is the one thing I often forget to pack. Which could, just could be the most critical if forgotten. If his button were to become dislodged, the stomach heals in about 4 hours. No replacement button means a trip to an emergency room to have a Foley catheter inserted to keep the hole in his stomach open until we get home. Done that.

And the trip itself.

I have built up this trip so much in my mind over the last couple of months. I spent an hour on the appointments line in February--when the intake person asked me what symptoms Robert had been having and why we felt we needed to make the appointment. So I told her. I think she might have asked me when I first noticed the symptoms, which, of course, was 12 years ago.
Then I assembled as much of his neurological medical records as I could get my hands on. A review of the whole 12 years.

Having thoroughly reviewed the whole dire mess and revisited all of my anxiety points with the various specialists we consulted, I then went online and read nearly every frame and screen of the United Mitochondrial Disease Foundation website. To find myself nearly saying out loud, that's us! that's Robert! those are his symptoms! iron intolerance? I had a bizarre and frightening spike in my blood iron level when I was pregnant with him!

It was that sensation of finding the last few pieces of the puzzle that look like they belong in the one you are assembling. Accompanied by the equally powerful realization that these pieces of sky and water and grass might easily belong to another puzzle and not yours, regardless of their apparent visual similarities.

It was, however, terrifying, like seeing on TV the aftermath of a storm that hit a place where I have been. And wondering how I might have felt had the wreckage actually been mine.

And the knowledge that, here we are, off to see the world, but when we get there, it may look an awful lot like the place we're in now. Which is to say, there may be yet and still no answers. Dr. Cohen might say, you know, it does look like mito disease, but there's no way for us to be certain. Because I've been to that place before as well--looking out at the Atlantic encircling the ship I'm on, looking out in a 360 degree circle at nothing but water. A circular horizon. The hermeneutic circle of diagnosis of exclusion.

And yet, I signed on for this trip because I had a restless feeling, just like Ishmael, that drove me on.

This trip might yield nothing. But if I look to the horizon, just over the edge, there's a squall forming alright. Do we want to be in it or not?


Dale said...

Oh man. Thinking of you, O voyager.

Elizabeth said...

I'm thinking of you, too -- and paddling alongside, albeit in spirit. The passage from Moby Dick is scarily apt. Your journey makes me think that I've stalled on mine -- and it's not because of calm seas -- it's like quicksand where I am presently, sinking.

A said...

At least you'll be meeting with someone who is truly familiar with the landscape of those puzzle pieces, whether they're part of Robert's picture or not, and can do some thinking from that perspective. At least that. I totally hear you about the exhausting process of reengaging with every level of baggage; it makes me tired just to think of it. Wishing you a safe and fruitful journey.


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