Garth Bigelow - Thoughts

Yes, I know I haven't written for a bit. Life has gotten in the way blocking my flow of words, but I've got a long train ride coming up in just under a week, and I'll catch everything up at that time. But some people were starting to worry: so yes, I'm still around.

The testing place calls and tells me that I don't need to come in for my MRI. Most of my long shot explanations vanish with that call. At least the NC trip is only a week away. I'll know what's up soon.

Dan & I went to breakfast at Gram's while most people were asleep or in Church. The last couple of days I have asked several people to explain how an egg laying rabbit who decorates his hard boiled offspring and then hides them for the entertainment of children to hunt and collect is connected to the resurrection of the son of God. Sheila came closest to attempting to answer this by at least tackling why a rabbit? In her opinion, it was because appendages would be needed to carry the basket and neither of us could think of egg laying animals that could both carry and walk. Yes, an Eagle could carry it in it's beak, but would then have a hard time hiding the eggs.

I then joked with my Mom that I would appropriate one of the less commercialized Christian holidays and make my own festive fable for it. But in looking for an underutilized holiday, I stumbled upon a sensible answer to the question.

I woke up only slightly later than I had intended to. With the exception of the laptop, last night I had packed up everything what I would need before I left. After a quick shower I set about methodically packing the car. I remembered my pillows, I packed up the laptop, remembered my sneakers (that walk through the huge train station in my slip-slide loafers is a real toe bruiser) and grabbed my cane just in case. As I pulled out of the driveway I was feeling pretty good that I had for once remembered everything.

About an hour north of Daytona I realized I forgotten my sound machine (I can't sleep in silence. At home I have a fan, a sound machine and a cd player.) An hour short of Jacksonville I realized that while I had finally located the keyboard adaptor just before leaving, I have neglected to actually pack the keyboard itself. I find it difficult to type a narrative on the laptop's built in keyboard as my hand continually brushes the built in mouse device causing the cursor to jump and words end up in the wrong place (as if I don't have enough problems with what I want correctly making it to my fingers as it is.)

Then on the outskirts of Jacksonville came the big blow: the power brick for the laptop was still plugged into the wall at home. While fully charged I would get maybe three hours of typing before the laptop became a temporary paper weight. So much for my plan for catching up the last month's missed "adventures" and keeping a decent log of my time at the Protocol.

Traffic brought me to the train station later than I would have liked, so rather than buy a legal pad at the adjacent Wal-mart, I grabbed one at the concession stand. So I would make my notes long hand and then type in as much as possible in the final two hours of the trip. I would make more notes at the Protocol and type those in at home.

The computer didn't even last two hours on battery alone, but I got every typed in and proof read and then even got some structure elements in place before shutting it down shortly after the 10% power warning signaled.

The train arrives about 40 minutes but I still arrive slightly early. Usually my first appointed stop is Caren, but I am sent up to blood leeching first, and then to Caren.

Okay the blow by blow gets lost to the details you are waiting for.

I am correct the Protocol is over, the drug trial is already underway. One important derivation though. I spend most of my time thinking of the Protocol as the implant, but that isn't the object of the study. The Drug is the one I'm not supposed to talk about. The implant manages my quality of life - manages the symptoms. The Drug slows the rate at which the disease progresses. They are going to continue to administer the implant every six months, even bringing it closer to me (Jacksonville, Orlando or Daytona) for the procedure.

I had guessed that they would offer me some kind prize/string so that I would have some reason to obey their Non-Disclosure Agreement, but this was way beyond what I was expecting. Their won't be any more MRIs, CEEEGs or follow-up, but I'll still get my dampener.

I was prepared for either path, this middle course had not occurred to me and I have to really think through what it means. In a way it's an evil path in that to have any chance of avoiding the really scary outcomes:

means pulling the plug while I am still relatively in control and rational. How will I know if I've tipped past that point? Suddenly I have whole new categories of thought to explore and extrapolate. At 1:45pm they insert the implant. The doctors acknowledge me even less than usual, if possible. This is probably hard on them too and they've probably been doing it over and over for weeks now.

Both my mother and my sister have wanted me to come live with them when I can't manage it on my own and are probably a bit hurt by my stubbornness on this point. But beyond the financial burden that neither can afford, my passing isn't going to be like Dad's. This thing is eventually move forward into my temporal lobe cause any and/or all possibilities of mental illness, down into the cerebral cortex causing all manner of perceptual and physical impairments, or deeper into the more reptilian sections causes nearly any ailment you've ever conceived. Even if they were somehow in a position to deal with that, that isn't the way I want to be remembered.

Tracy is coming to be with me for the month of August. I will reevaluate where I am at at that time. I'd like to make one more trip home, it should probably be before that. And ideally I'd like to safely make it through March and see my friends one last time. Oddly it will probably be left up to some sort of external trigger, most likely when the money (credit) runs out. So I should probably get on making some more of that, but I'm also going to try to squeeze some living into this time.

After the implant I'm sent to Caren with a slip for a six hour block. Lots of papers to sign, lots of talking, several personality tests ("If I were to plan to buy a shotgun what group of people would I go after?" That sort of thing. Scary thing is I'm pretty sure I could sink pretty far and still know enough to out think these things.) and more talking. Most of it's a blur. I know I had a hundred questions, I think I asked most them, but I'll be damned if I remember what they were or what the answers were.

By the time we are done, it is too late to catch the evening train. I debate sleeping and catching the morning one, or staying awake for 3 plus hours for the dead of night express. The Hoax starts in 20 minutes, I figure it let my mind idle a bit. Even at a brisk walk I miss the trailers. The movie is surprisingly engrossing and I do manage to both stay awake and lose myself in the entertainment.

I do my best to sleep on the train but my mind is going a thousand miles a minute. Bouncing from thoughts on where my life is headed now to thoughts on the bits of news I've picked up this weekend on cultural events. And around and around, and I'd doze off here and there, and wake still thinking. When it was early enough I called my mother, but the cell connection wasn't very good and it broke up fairly soon.

I arrived in Jacksonville in the late afternoon and it was incredibly bright out. Even through my sunglasses I could handle the drive. I was going to get something to eat, but after dropping off the highway I ran immediately into another theater. The only film of even the remotest interest that started around the time I was there was Disturbia. I talked to my mum some more while I waited for the movie to start. This was a film I wouldn't have chosen to see in a theater but I enjoyed it more than I expected, especially considering how much I was yawning from lack of sleep.

I was hungry and the sun was even more annoying now, so I stopped at Cracker Barrel. With food in my stomach I was now much more tired. I drove with the window open, which is not fun in Florida. But I arrived home safe and sound all the same.

I think it's time to cut back on posting here - except for any big events or mental state change observations. The Flowers for Algernon reference tickled me when I first wrote it; it no longer does. And I think I should concentrate on getting more of me - my past and experience - into this site.

I was working on an anecdote when it occurred to me that I have never been slapped by a woman. That didn't seem possible but try as I might I can't remember an incident of it. I came to the conclusion that was a sign that I had not taken enough risks in my life. But then I realized, outside of TV, I've never seen anyone else slapped either. I don't think this happens much in real life.

I noticed an OCD like thing with my hands. I can't stop rubbing them or cracking my knuckles. It's not done because they hurt, and most of the time I'm only vaguely aware I'm going it. I think this has been going on for quite a while but I think it is becoming more frequent. Not a big problem in the scheme of things, but mildly disconcerting just the same.

I'd like to think I just somehow missed this, but I suppose it is just as likely that I have forgotten - but today I learned that Robert Anton Wilson passed away back in February. One of the last great masters of thought, he had a profound effect on how I perceive reality and my relationship to the universe. He changed not only how I view the universe but how I think about viewing the universe. I doubt I'd be as accepting of my current situation as I am had it not been for his writings. The world seems a smaller and more mundane place with the news of his passing.

My sister flew down to visit for the weekend. She is a very quiet person and brings out the quiet side in me (even more so than it as usual now.) We must seem very boring together, but I greatly enjoyed her company and wish she could have stayed longer.