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I have had a diagnosis of "Narcolepsy" since I was a young adult. Most people with narcolepsy, I have heard, receive a diagnosis when they are in their late adulthood and then realize retrospectively that they had had symptoms since early adulthood. Sleepiness, lack of energy (Excessive Daytime Sleepiness), muscle weakness, sometimes muscle drop attacks (cataplexy), vivid dreams (hypnogogic dreams), and sleep paralysis (sleep paralysis) are symptoms associated with narcolepsy. I had noticed through the years that I had not had the 'insomnia' that some with narcolepsy had reported. I do and have had the other symptoms.

While leaving the Shakespeare play at it's conclusion, I was having a lot of drowsiness and subsequently the surfacing of a number of automatic behaviors (an associated symptom) that I have developed over my life. Y and S seemed, by my recollection from the time, motivated and caring about us getting back to Mark's (the CouchSurfing.org host we were staying with) safely. Later I heard that there was, that evening, some tension around "caretaking".

So having lived with a rather moderately severe case of narcolepsy (in that I have the full range of symptoms), I am feeling some confidence (and maybe some defensiveness) that even when I am tired, doing autonomic behaviors, that I seemingly have a "lizard mind" that is keeping me safe while I am having a narcoleptic attack. I have weaved and gently bounced off walls and sometimes people when I am walking-while-sleepy state. Other autonomic behaviors, for me, have included minor, though not necessarily 'life enhancing' actions like: checking my pockets to make sure that my keys didn't just drop out, looking behind where I have just walked to see if stuff fell out of my pockets, writing notes in a notebook of what I am doing so I can review them later when I have forgotten what I was doing. Often times I have taken notes and the sleepy scrawling handwriting is illegible when I read it later in a more awake state. Sometimes I have found indications that I have done something, like take a bath or enroll in classes online, that I don't recall doing except for that I have taken notes and notes of the passwords I created. Sometimes kinda complex stuff. Mostly I find automatic behaviors, for me, to be low-energy actions that suck up time, and my life, that I kinda don't remember doing. I have compassion and some insight that the actions are being done by me and my "lizard mind" to "keep me safe" and indeed I have not lost any limbs or suffered grievous injury, yet. Nonetheless, I choose to resist 'checking' often as it has seemed to me to be a socially isolating action, just slightly "off", to the casual viewer. Not dangerous to others or threatening, but just slightly, subtly socially off putting. And unlike television portrayals of narcolepsy that emphasize the visually dramatic episodic "drop attacks", most of my life has lingered with "excessive daytime sleepiness" and lethargy.

It is a source of pain in my life.

Substantially different than a lack-of-motivation, I seem, and have had the experience of being, motivated, creating ancestral living skills projects, homecrafting projects, and some accomplishments, and see that as my 'evidence' when I hear people wonder about why am I sleepy and not getting something done. I have indeed built up quite a charge around it cause sometimes people, in trying to be helpful, and in meeting their needs, have suggested that I should take a nap and become refreshed upon waking, like 'normal' people. On the contrary, when I go to sleep, my experience has been of frighting unending dreams (hypnogogic dreams) that are hard to separate from reality upon awaking. I wake up usually tired, exhausted, and with a particular type of headache that I have not yet read anything about in the narcolepsy literature. In summation I wake, tired, headachy, with vivid images that lend confusion about what has happened in real life or whether what I clearly and sharply recall was really a dream.

I hear that my experience is often hard to relate to and sometimes, despite the efforts I see others doing, hard to maintain an unattached state from their expected outcome and my experience of my outcome. Additionally, I realize physical stuff is just stuff, and hope that my "lizard mind" will realize that too. Dream processing (like journaling) has lead to a certain solidification of the dream that I feel is not useful in achieving separation from the dream, for me.

So I am fairly sure that Mark either thought I was on drugs or didn't notice my actions of that night, most likely the latter. It is true that while in High School, while I was yet undiagnosed, many teachers recounted to me, post my graduation, that they thought I was on drugs most of the time when I was in high school. That ghost stuck with me.

I notice I am resistant to 'just taking a nap' or to public sleeping because of my own fears of that ghost and, as well, my perceived fears of the social consequences to me. Sometime also, when I go to sleep, when I wake, I cannot voluntarily move my muscles or limbs till a bit of time has passed (sleep paralysis). 

When I have fallen asleep in public, like on a train or public transit, I have had the experience of waking up, but missing items, sparking conclusions that I have been robbed while asleep, though it has been a rare occurrence as I have gotten older and enacted the behaviors that keep me safe(r).

So we made it back from the Oregon Shakespeare Festival campus, by walking our bicycles, to Mark's condo in the north part of Ashland, while Mark had bicycled ahead. In the morning we packed up and left, with the only complications being that Mark had, late in the evening, opened up his house to three other couchsurfers, as if that were a complication. Mark seemed to enjoy the Shakespeare performance, as did I.

Since we had been in Ashland two days, having arrived via Oregon Route 273 (also known as 'Old Highway 99') to Oregon Route 66, met the Couchsurfing.org host, then established the sleeping accommodations and the next day having gone food shopping at the Ashland Food Co-op, spent some time in Lithia Park then attended the play "Henry IV, Part 1", our packing and departure from Ashland went smoothly. We exited the City of Ashland eastward via Route 66 then turned east northeasterly onto "Dead Indian Memorial Rd.". The route was fun for me, uphill, sunny, with few automobile traffic, lots of grasses and cows. Jackson County was proving to be beautiful to me. 

While trekking up the hill, S and I encountered three aggressive motorists who shouted toward us. We noted that when a motorist is shouting, driving, and there is ambient background noise, it is really hard to understand what is being said from the motorist, even with tonal clues. Following that incident by less than 5min there were two people in a car who paused as they were passing us going up hill, opened their window and mentioned they had seen us outside of the Ashland Food Co-op the day before. They then asked if we wanted some grapes, and proceeded to dump cool refreshing water over the grapes to wash them and to increase the temptation. We gratefully accepted the pound of grapes. Y, who had ridden ahead, should count herself luck that she got any grapes, considering how much I love grapes. 

Y actually rode so far ahead, she became confused thinking she was trying to catch up to us, when in actuality we were behind. The intermittent cellular phone reception here in the hills was not helpful in defusing the confusion.

We camped that night at a campground, a very full campground, at Howard Prairie Lake (4,526ft), having left Ashland at 1,895ft elevation, then crested a pass of 5,200ft for a maps.google.com total of 23.5miles.

The campsite had few mosquitos but enough that I recall having a minorly brief snack before crawling into the tent and zipping up the tent's netting. As the campsite was "full", I am grateful that Y had bicycled ahead, even in her desire to catchup to us though we were actually behind her, and gotten a space for us at the edge of habitation. The lake seemed a peaceful place, especially when compared to the minor, though present, activity within our group. 


( 2 comments — Leave a comment )
Mar. 19th, 2011 07:15 pm (UTC)
This was pretty provided that there are a lot of out there just waiting for the right.
Apr. 12th, 2011 02:36 am (UTC)
Hi there--I'm poking around your lj and enjoying it. Just wanted to say hi and it's helpful to me to learn a little about your narcolepsy. I have another friend with narcolepsy and feel guilty I never researched it. She and I have never much talked about it, and I think I was insensitive about one of the limitations she mentioned years and years ago. I'm sorry it's a source of pain and people have thought you were on drugs when you weren't. I can relate to the whole, "Just do [fill in the blank] and then act like a normal human being please," when nothing I could do could make me act like a normal human being.
( 2 comments — Leave a comment )

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