Any chance of getting the Observer to note that the FDA (stampeded
by Nader's "Public Citizen") took the one drug that helps you off the
market?

I am gobsmacked. TNH is a wondrous person. It's a pity they couldn't run the full piece.

Indeed; the full version has so much more depth and color. Still, what made it through the Observer's editing still conveys a fascinating description of a challenging situation.

That was riveting. Are there old posts about this condition? I've
only been reading here about a year. I noticed the Cylert comments
(being an ADDer), but that's about all.

That's a great piece. The two things which stood out were the
comment about fandom being confused if it were called tolerance. That's
is such a wonderful thing to find out about one's group.

The last line, not what I intended to be, just what I can be. is as sublime a statment of the human condition, and the triumph of will over circumstance, as any I've ever read.

That the concision of Teresa's writing so often leaves me in awe, is just icing on the cake.

We should transcribe and post Teresa's long editorial in Izzard, I think issue #7, written in the wake of her first year of diagnosis and treatment. 1982, I think.

Tazistan Jen: There are various posts, and comments, about her narcolepsy.

Fckng Rlph Ndr

A Narcolepsy Update

Are two posts on the subject specifically.

Making Book says it was in 1983. Wasn't that one of the
ones that got y'all nominated for a Hugo? (I remember reading the
sample issue; I think it was this one.)

Wow. Just . . . wow.

I'm also narcoleptic, albeit of a more subdued variety. My
constellation of symptoms doesn't include catalepsy, but I've got all
the rest.

I had never heard about the connection with writing. I just knew that I fell asleep at the computer an awful
lot and that pieces of a length greaterthan flash fiction were
difficult to maintain voice, POV, pacing, and nearly everything else.
Still, the writing continues, with whatever new work around is getting
it done this week.

Thanks, Teresa. It's always good to hear you're not alone.

That's beautifully written.

I would link to it, except that I believe every single person on my flist over at LJ already reads Making Light.

And "not what I intended to be; just what I can be" made me tear up.
That's exactly how I feel about my asthma, and I've never been able to
articulate it quite that well.

(Nitpick for clarification: Narcoleptics often have cataplexy, not catalepsy. Different.)

Thanks for the longer version. I'd seen most of the information
before, but most of your readers don't have that Izzard lurking on a
shelf somewhere. I liked what you told the neurologist about the book.

Yes, fandom is often helpful and accepting without thinking about
it. When it works, it's the same sort of thing that Nancy Mairs (an
essayist I read ages ago, who has MS of the nastier kind) mentions,
going to rural Zaire to visit her daughter in the Peace Corps. There
weren't wheelchair ramps, or even paving, in a lot of places--so one
day, one of her daughter's friends just carried her, piggyback, to see
a waterfall. "If you meet a woman whose legs don't work, you carry
her." Not the only response, there or anywhere, but well within what
people do. And when you do that as a normal response, it doesn't feel
like tolerance. When you do it while everyone else is doing it--when
you don't stand out for making it easier for someone to read your lips,
or for being matter-of-fact about the cataplexy--it doesn't feel like
tolerance.

And when it doesn't work, fans are as capable as anyone else of
being obnoxious about seating reserved for wheelchair users, or any
number of other accommodations. Again, part of what humans do sometimes.

PNH @11: Whoops! Mea culpa - I blame the sleepiness.

Teresa, that was a fabulous piece. It proves that you don't need a
lot of words as long as you pick just the right ones. The last line was
incredibly moving.

Thank you very much for putting up the full version.

Well said, Teresa. I've just been through a round of testing for
non-cataplexic narcolepsy (diagnosis - hypersomnia but not narcolepsy).
As well as sleep apnea. Getting treatment for both has helped my
organization and productivity enormously.

And I really, really, like not falling asleep all the time. I've
been known to fall asleep standing up. Not for long, granted...

I recall going for nine weeks on an average of four hours sleep for nine weeks.

It was eye-opening. I could sleep immediately, when I got the
chance. I did have some waking dreams (one of them while I was
reading). I kept my self from falling asleep wby writing.

I hope to never have so little sleep for so long ever again.

I noticed that the Observer version has a few sentences which do not
appear in the original version. I'm curious, since I know next to
nothing about the real world editing process... where did those lines
come from? Do editors add material when they edit a piece? Does the
author approve the new lines?

Congratulations on a great piece.

TNH, thank you for writing that. What struck me the most was this line: "I’ve
also been fortunate to be a member of the science fiction community,
whose unflappably practical acceptance of disability runs so deep that
they’d be confused if you referred to it as tolerance." I'm
strongly reminded of that feeling of belonging I had way back when at
University amongst all the "odd ones" I called friends. There really
are people that just help, or just deal, or just plain accept
and I count myself fortunate to have known some as friends, to have
found one to be my wife, and hope that others find such in me, at least
in some small measure.

Reminds me of ML, too. I don't feel alone here.

Thanks,

-cajun

Whoops, that'll teach me to have my e-mail program open at the same time as I'm posting...

Later,

-cajun

#6 Patrick: I for one would be grateful. I wrote Teresa a fanletter
when I first read that piece, and got back a lovely response that began
"Oh, Dear." (I get the impression relatively few well people write her
about that piece... meanwhile I find myself needing to show that piece
to people ALL THE TIME and a) I can only locate and buy so many copies
of Making Book and b) sadly, the rest of the book would bounce right
off of a number of the people I need to show that bit to.

Teresa: I have often wondered, actually, if it would be polite to
avoid telling jokes without warning should I find myself in your
presence again. Or to put it another way, the only reason I would
really be fazed at you falling over is that when *I* fall over it
generally HURTS. If one may ask, is it a sort of controlled and largely
harmless collapse, then?

Great article. The original works better in terms of narrative sense, so I really appreciate that you've made it available.

Also, I think this is the place for some long-overdue gratitude to Teresa.

So, about that gratitude: I first hit this blog in and around the Cylert post, because someone pointed me to Atlanta Nights and I got into the comment threads and went, "hey, this is great."
And as I read on in my newbie-lurker fashion and side-researched terms
as necessary, I realized that (a) sleep disorders are real, and (b)
sleep disorders are real, and (c) wow, I've really internalized that
thing where people tell me I'm just lazy, haven't I?

No narcolepsy here, just a circadian rhythm disturbance that matches this description, sometimes with very difficult waking, but it was one of Teresa's descriptions of fighting against sleep (I think in Making Book) that clicked for me. Because the Laurie Anderson lyric "and when you think you're swimming to the surface / you're swimming straight down"
describes some of my mornings, and there was finally some external
report I could use to tell myself that this wasn't made-up. Wow, I
thought, my lifelong failure to go to sleep at night and wake up in the
morning like normal people wasn't simply due to lousy moral character.

I still don't have health insurance, but the revelation's allowed me
to set boundaries and not feel guilty about it, and that's improved my
life definably.

So thank you, Teresa, for talking and writing about these things and inviting others to do the same.

While not narcoleptic, I can sure relate to excessive daytime
sleepiness...that nagging pressure at the edge of my consciousness,
never absent even for a second. Mostly better these days, but you take
my CPAP machine from me when you pry it from my cold dead fingers.

(I wish there were as easy and effective a treatment for Teresa.)

I'm glad you posted the full text - it is beautiful and sad and touching. Excellent writing, TNH. A wonderful piece.

Excellent stuff, indeed. I haven't bought The Observer since
its witch-hunt (years ago now) against my then UK ISP for publishing
child pornography -- that is, not censoring its Usenet feed -- so
thanks very much for allowing a view of the uncensored version here.

Wow, thank you publishing the full piece. The Observer did a fine
job of fitting the piece into hole they had allocated for it. Those who
don't get the chance to read the full version may not realize what
they're missing. What Teresa had originally written, though, feels more
intimate and personal. The details of the strategies she uses to
monitor herself, to navigate her days, are fascinating.

Thanks for writing this, but unless I missed something, there wasn't
anything about what you do to be able to write while narcoleptic, and
I'd love to know what they are. I'm not narcoleptic, but I have some
attention issues, I think.

I can't believe they cut the last line. I understand that length is a concern, but really.

I'm glad you posted the uncut version. It is in all ways a wonderful piece of writing.

("Not what I intended to be, just what I can be." It reminds me of
Gene Wolfe's "That we are capable only of being what we are remains our
unforgivable sin." Except better, really.)

Re: Nancy Lebovitz @ 26, I admit to having mentally filled in the
blank, as my brain can go various ADD forms of kaput when I try to
write with nothing but the empty page; so my writing techniques have
involved everything from reading a book in one hand and writing one in
the other, to eating and drinking and listening to music, to
interjecting bursts of random exercise.

I really am curious what the brain management technique is like from
the narcolepsy end of things, and also join in on encouraging Teresa to
give forth knowledge!

They shortened it to the symptoms. Even at that, it's pretty
gripping. As someone who's prone to insomnia, I feel a strange bond
knowing we go through many of our days feeling similarly
sleep-deprived. There's nothing more frustrating for me than fighting
to stay awake at my desk all day, then lying awake all night.

The bit about hypnogogic hallucinations was the most fascinating for
me--I've never heard of it. I'm wondering if this is something many
children experience while their brains are still sorting themselves
out. I had a couple of terrifying "visions" during childhood, at times
when I know I was awake. Others have told me about visions they had
during childhood: UJ once said he'd seen a vision of a galleon, and LD
described having seen a cat walk down a moonbeam and lie down on her
bed. My son saw a ghost standing in his doorway when he was three.
Well...maybe that *was* a ghost.

Not what I intended to be, just what I can be.

That is a good phrase. I've been living with that for many years
myself, on another matter. I've tended to say that I am not who I would
have been under other circumstances, but I am no less happy than her.

It's a real victory, for real life, rather than a fairy tale resolution. I'm glad you've come to it, Teresa.

Mary - The condition you describe is actually pretty well known, and it can affect adults as well as children. You are
awake, but your body is still held in sleep paralysis. The visions are
not actually dreams, but a different set of neurologic responses unique
to the Sleep Paralysis condition. The visions are almost always in the
same vein: a ghost or demon, or some scary, bipedal monster-critter. If
it happens while you're waking up, it's called hypnopompic paralysis.
If it happens just before falling asleep, it's called hypnagogic
paralysis.

A good friend of mine had this happen to him once when he was 18. He
saw a demon, and believed he banished it by invoking the name of Jesus.
At the time, we had no idea what it was he had gone through. For him,
it was a religious experience and became the basis of a conversion to
Christianity.

Twenty years later, in my nursing training, I found out that what he
had experienced had a physiologic explanation. I never told him.

Like A.J. Luxton @21, I owe Teresa thanks (thanks, Teresa!) for
inspiring me to get off my butt and seek a proper diagnosis. Twenty
years ago, when I was an undergraduate, I had a sleep study done
because I was unable to stay awake during mid-afternoon classes, no
matter how much caffeine I took, even when I was fascinated with the
subject matter and had a very good professor. The study turned up
nothing - I had the best night's sleep I could remember having in a
long time, despite being covered in electrodes and wires - so I just
gave up and figured there was nothing to be done. Even repeated
near-accidents during short morning drives, due to micro-sleep, didn't
get me to try again.

Then I went back to school to get my law degree, and it went from
irritating to "I might fail this class." In early 2006, after reading
Teresa's posts about what she was going through, I scheduled a sleep
study, and finally had a diagnosis and treatment by the start of 2007
(just in time for Baylor's dreaded Practice Court). I'm lucky - I have
mere idiopathic hypersomnolence ("you're too sleepy, and we don't know
why") and it responds marvelously to 100mg of Provigil a day.
Every few weeks I take a weekend off from the Provigil to preserve its
efficacy. When I do, my first reaction is "Whoa! What a rebound!" Then
I adjust, and realize that this is how I used to feel all the time.

Teresa, although I learned of narcoleptic conditions in school, and
knew from your previous writings about your condition (and Rlph Fckng
Nadrs "contribution" to it), this is the first time I've really seen it from the patient's point of view. Wow. Fucking. Wow.

I will never bitch about my own insomnia again. Even when
I've gone 72 hours or more without sleep, it's never had the effects
you've had to adapt to. Did I say Wow?

I do REALLY wish they could have printed the whole thing...

Oh, and BTW, considering that you're in an industry that not only
requires creativity, but surrounds you and immerses you in it, I would
consider it a distinct honor to be able to say something funny enough
and original enough to make you do the dish-rag thing.

I promise to catch you in a Jim-Macdonald-Approved fashion, all while grinning like a maniac...

The shorter article makes sense in the dead tree version, next to
all the other stories of sleep disorder. (It's subtitled "Is That a
Giant Bird I See" and has a picture of TNH looking left out of the shot
and slightly up, which made me grin.)

Edward @ 33: "I will never bitch about my own insomnia again."

I feel the same way. Insomnia is way, way more treatable. The
damnable thing about it is that it can pretty quickly lead to suicidal
levels of depression, and one puts off getting treatment, always
thinking "maybe I'll sleep tonight." Some people crash and burn faster
than others. I've been suicidal after just a few weeks of
sleeplessness, and my late husband shot himself after just one week of
sleepless nights. There were other issues, but it was the insomnia that
did him in. What is it about sleep? Sleep disorders of any kind are no
fun.

Thanks for posting that, Patrick - great article, as usual, Teresa.
It's too bad they cut out the description of the highway dreams...one
part of my brain was going "oh, how cool!" while another part was
thinking "oh, how terrifying!" A nice piece of writing, all around.

I sometimes wake up into a semi-dreaming state, where I'll be
hell-bent on doing something that comes out of whatever dream I was
having. For example, once I woke up and woke my husband up because I
was worried about our roomate, and wanted to make sure she was okay. My
husband said "we don't have a roomate," and I petulantly said "okay,
housemate, whatever, I mean the person who lives with us!" Once I woke
up a little more by walking around the house looking for her I realized
that nobody lives with us and I was dreaming. Another time I was
convinced that a thing we were supposed to be guarding had fallen
through the hole in the middle of the bed, and that we needed to get
under there to find it. Of course there is no hole in the bed, nor any
"under" since our box spring sits right on the floor. My husband is
very patient.

I've always chalked the weird wake/dream states up to PTSD--when I'm
having a flare-up, the line between dreams & waking can get hazy,
and when I'm well, I seem to sleep normally and have fairly linear
dreams.

I should have asked before, but could someone in the UK pick us up a
dead-tree copy? We'd actually like that whole "Observer Review"
section. Happy to refund expenses.

#6 - that would be so appreciated

#7 - off to read

to drift to dreams: One of the weirdest dreams I've ever had was
dreaming that I was being wakened from a dream. I told the person
waking me to go away, and went back to sleep.

When I awoke I went looking through the house, because he wasn't going to have driven 60 miles to just go away.

He'd never been there.

I have, a few times since, been dreaming through levels of dreams,
but never with that vivid a sense the upper-dreamtime was real.

Mary Dell @37:

I sometimes wake up into a semi-dreaming state, where I'll be
hell-bent on doing something that comes out of whatever dream I was
having.

My husband does that, but usually the thing he's trying to do is to
escape one form of mortal peril or another. There is usually screaming.

I can frequently reassure him by reminding him that I am scarier
than anything in his dreams, and right here*. He then needs to go off
somewhere and convince himself that he is not still in whatever
terrible danger he thought he was.

"Night terrors," his doctor told him. We've observed that they
increase in times of stress, and generally happen about an hour after
he goes to sleep. There's no PTSD involved.

And now, oh joy, it appears that my son (7) is prone to them too.
I've had him come out of his room, not really awake, in inarticulate
distress, twice in the last month.

-----

* This works until the danger in his dream was me. Then it's not so good a strategy.

PNH @ 38: Done. Email me postage details?

Jakob, #42: Thanks. Email incoming.

Abi, my son had classic night terrors when he was two. My god what
an awful phase. He'd wake up screaming, or perhaps he was still asleep
and screaming, we could never tell. He appeared to be awake but we
couldn't get through to him. Fortunately he outgrew it.

Our son had something akin to night terrors too. I found out quite
serendipitously that all he needed was a gentle hand on him -- chest,
shoulder, something -- and that almost immediately calmed him into
sleep. The first time it happened I was so afraid to take my hand off
that I spent 15 minutes in a very uncomfortable position standing by
his bed. It worked when he was having a meltdown too (overtired,
overwrought, over 2 hours of crying...).

Abi, Mary, Ginger - my daughter had night terrors, too. They were
part of her general inability to "do" sleep (never more than two hours
straight from birth to three and a half years), which may have had
something to do with sensory integration dysfunction.

She has since gotten the hang of sleep, and does it very well
indeed. Poor thing, I can only imagine trying to make sense of the
world with that level of unsleepingness (I sometimes got a few more
hours in a row - because other people could join in and take over her
care; she couldn't get stand-ins for being her.)

The night terrors terrorized her dad and me, too - we had no idea
what to do about them. They're right up there among the scariest things
kids have done around me.

Teresa, the piece is a wonderful description of a land that is
(blessedly) foreign to me. I am in even more awe than usual of your
writing.

I've been trying to figure out how to say: "oh, so you write so very
interestingly because if you wouldn't, you'd literally bore yourself to
sleep?" without sounding like an idiot, and I can't figure out how. So
I'll just go ahead and sound like an idiot. I say it in the purest
admiration of your writing - you really *do* make everything you write
so very interesting. I imagine your writing would be every bit as
interesting even if you didn't have to have it be so in self-defense.

abi @#41: For an adult, having them do some quick physical centering
activities may be helpful for bringing the mind back into reality--a
little yoga, for example. At least, that works well for PTSD, which is
about the mind coming unstuck in time. "Normal" night terrors seem to
be about the body doing stuff with adrenaline and nerve impulses and
screwing with the mind, so some other physical response may be
useful...push-ups or something energetic. Or killing a dragon. With
kids, simple parental comforting seems to do the trick after the
fact...but there doesn't seem to be a way to prevent night terrors,
unfortunately.

As previously threatened, we've HTMLized and posted Teresa's editorial from Izzard #7, September 1983, written in the wake of our first year or so of dealing with narcolepsy and the world of sleep medicine.

I'm going to create a little special section on our never-read home page, specifically for linking to narcolepsy pieces.

(Special section now created, in the right-hand sidebar of nielsenhayden.com. Among other things, it also links to this piece from 2005, not previously mentioned in this thread.)

Thank you for that, Patrick.

(I do visit that page betimes, but far less frequently than this blog.)

This reminds me: Patrick, Teresa, did you ever get around to seeing The Host, the Korean monster movie with a narcoleptic hero?

Dena: At some point Maia might want to talk with you about SI. Be
warned, she thinks it mostly bunk, smoke a mirrors; though it may be a
problem with extending a primary developmental problem to more grown
individuals.

Certainly as presented to her in the framework of OT instuction I am more with her than against her on the bunkum category.

Prior to the instruction she was more accepting of it.

Patrick: I read the page, every so often, when I am on a computer not mine own, but not often.

#52: I'd almost forgotten that detail of The Host. A fascinatingly flawed character.

Nicholas Gurwitch, the guy behind the Perry Bible Fellowship comic, raved about the movie on a panel yesterday.

Terry, I'd be delighted to talk with Maia about my experiences with
SI. Obviously, I could go into much more personal detail in one-to-one
than on the web - but the short version of what I have to say is that
the existence or non-existence of SI as such (or the specific
definition of what is happening with the kids labeled that way) is far
more a matter of parenting technology than parenting science. Diagnosis
is primarily useful to a parent of a kid with any problem as a pointer
to the cumulative information about making the problem go away.

When the problem is "my kid won't sleep, talk, or eat" (for example
- these issues are often encountered in SI diagnoses), you're talking
high-stakes.

It is a concern of mine that many of the conditions currently
described as "developmental disorders" or "issues" are of that variety.
Their diagnosis is an art, and their treatment seems random. This leads
to understandable difficulties when trying to defend a particular
diagnosis and course of action to people who need a greater level of
scientific rigor in their definitions. I have no solution for this. All
I have are two anecdotal children, who benefited anecdotally from the
diagnoses that followed those arts.

And do feel free to contact me by phone or email, my contact info is
easily obtained by simple web search - especially if you keep in mind
my profession.

Terry, #40, I once had a dream of dreaming. In the dream, I
was sleeping in a recliner and I woke up, but it was a dream and I woke
up again. It took four levels to really wake up.

abi, #41, I first remember night terrors when I was eight and
they continued until I bought this condo -- when I was 36. I'm pretty
sure they started when Mother went into, in hindsight, clinical
depression and shut down. I think they stopped because I stopped
pretending to be a Christian.

Dena: Maia's big complaint is that, as presented, it doesn't address
the core problems; that there are better ways to resolve most of the
problems.

I don't know what, if any, of those ways, would have worked with your specific problems.

Terry: I would love to hear about better ways to resolve the core
problems. In fact, I would be overjoyed to find out what the core
problems actually are!

Reading the 1983 piece - was the director of the sleep disorders center really called Dr Orr?

Dena: Well... where do you live? Maia might be convinced to do a
consult. I don't know, and it wouldn't be legal until sometime in
October, probably.

I don't know what the fee/cost would be. We have to pay bills
(though she has no student loans). Dealing with this sort of thing is
something she really wants to address (issues of behaviorism as OT
tool; that and she really doesn't like SI), so there might be a reason
to do it for cost.

But I can't make that sort of promise, even contingent, so I'll talk to her about it.

Terry, if there is an underlying issue I would indeed want to know
about it... ...I am open to discussing options, but wouldn't put a lot
of energy into chasing options - unless either issues appeared again or
I were persuaded that similarly debilitating issues were likely to
appear again due to some future workings of biochemistry.

Again, as I said earlier upthread - I'm fascinated by the subject of
SI and the possible causes of the symptoms associated with it. And on
public forums, I'd much rather discuss the general theory than specific
cases.

Marilee @ 56, Terry @ 40: I've had those. The weirdest one was the
one where I was at the H.P. Lovecraft Film Festival, catching a quick
nap in the hostel I'd rented two miles away before the afternoon
program began, when the friend I'd been up all night talking with
walked in and said "Wake up, you're going to be late, it's twelve
o'clock," and after I drifted off to sleep, walked in again and said,
"It's one-thirty, you're late, wake up!"

He was, of course, two miles away in the hotel at the time.

But sure enough, it was one-thirty, and the adrenaline rush meant I drug myself out of bed and scrambled back to the festival.

This was one of a short-run, limited-edition dream series I had at
that time in my life in which close friends would wake me up and tell
me weird things about time.

I remember when I was very young having something like a
hallucination. I was in my crib, with a couple of toys. One of them was
a toy airplane made by Fisher-Price. It had a hinge in the middle and
could open up; I remember it being open and there being a pigeon coming
out of it. I found this very frightening, although I've never been
particularly scared of pigeons as such. My parents speculated that the
source was a TV ad for Hitchcock's The Birds, and that might well be right -- although I don't remember seeing the ad.

At the time I was absolutely convinced that the pigeon was real. It
wasn't dreamlike at all, even if in retrospect it can't have actually
happened.

I've had one dream of waking that I can remember. It was when Katie
and I hadn't been together long. I was staying over at her place and I
woke up in bed beside her. We began to make love. And then I woke up
again. For a second time we started to make love; and then I woke up a
second time. I remember complaining to Katie at that point about the
frustrating dream I'd been having.... And then I really woke up.

That reminds me of a period the year before last when I was having a
lot of trouble getting up, and then tended to remain in a stupor for
the first two-three hours of the day. There were several occasions when
I had a to-do list that I wasn't really capable of accomplishing in the
morning, but needed to do it anyway, so spent my last hour of sleep
dreaming of getting it done and woke up quite disappointed.

Marilee @ 56: I once had one of those dreams too. I dreamt I was
asleep and dreaming about being asleep, and waking up late for an
important exam, then waking up and being late for the exam, and waking
up in real life -- and it was Sunday. Not late for anything. It was
such a vivid experience that I have never forgotten the levels of
disorientation that I felt.

Yes, the important exam was on Monday. No, I didn't oversleep.

This has been a windy month where my allergies wear me out by 8 p.m.
(without taking much medicine for them that would make me drowzy), but
last night my husband and I stayed up past midnight for our first ever
experience of that great silent movie La Roue on Turner.
Luckily, he has today off, but I'm still amazed at the power of art to
keep a (fortunately non-narcoleptic) person focused *long* after
bedtime. Oddly, I didn't seem to have many dreams during my six hours
of sleep. Too tired, or did the film temporarily render them
unneccessary?

The most fun combination of reality and dream I had was one night
last week when our 18-pound cat walked on top of me and I imagined
something like lamp poles extending into surreal shapes where he
touched me.

When I was about 1 1/2 I had what was probably a hypnogogic dream.

I was in my crib, and two wireframe sorts of figures, one in glowing
orange, the other in glowing blue, were doing things in the space
between the crib and the stairway down. The orange one was tall and
angular, the blue one short and stout.

Any more detail is filled in from 40 years worth of memory.

When describing sometihng else in that house my mother was amazed,
because we only lived there for six months, and she had no question
(some 20 years later) that I recalled it.

Teresa - wow.

#31, Edward Oleander -

Physiologic explanation is really frightening. Lucky for me, I
didn't have one until after I'd had a few episodes of sleep paralysis*
and had read about the phenomenon. I was able to take it as a
terrifying dream and move on. Best of all, I've only had the one.
*shudders*

*I call it that because I lack more informed terminology. Several
times over a particular summer I'd wake from a nap and be unable to
move for a few moments.

the "Let them know so that if they freak out, it's their problem"
cataplexy issue makes perfect sense to me: I have an allergy to
volatiles (mostly perfumes; more particularly the stuff they put in
cheap perfumes that push the smell out. Oh, by the way, they put the
cheapest perfumes (with the most vicious of those chemicals) in
ubiquitous stuff like hand cream, hair gel, the kind of colognes they
advertise on TV, soap (hand, dishwasher, laundry)... Great, yeah?) and
for me, it manifests in a blinding headache and general irritability.
For my mother, however (and it will be the same for me, in time), the
manifestation is a hacking cough; if it's particularly bad, a
convulsive cough that causes her to lose all mobility control. Of
course, with all the irritation from all the chemicals, she also coughs
eating toast, breathing cold air, and other things effectively "at
random".

She also warns people about it, and tells them to just keep doing
what they're doing when she sets off, and she'll rejoin the
conversation when she stops coughing. Doesn't help.

It freaked out my wife when she first found out about it, and other
of my friends; because here's my mother who I deeply adore clearly
choking to death, and I'm sitting there, continuing on as if nothing
happened. On her orders, no less.

Of course, most people don't believe her (or me for that matter)
when she says that she has an allergy to perfumes and cigarrette smoke.
The "good" news is that when they say to themselves "she just doesn't
like the smell and is playing the allergy button to get me to stop",
her reaction is clear, visible, and scary. I just get snarky; they don't believe me. Ah well.

Great article! Congrats, T.

Teresa's official position on jokes is that you'd damn well better
tell them to her. She awards points for making her fall down. It is
generally considered polite to check that she hasn't fallen in some
uncomfortable or dangerous position -- I always make sure that her head
is straight, and she isn't tangled up in any furniture.

#70, beth meacham -

That's reassuring, actually, because I did wonder if "Did she land okay? Yes? Good. Ha! I got Teresa with that one!" was an acceptable response to the situation.

(I doubt I could pull off being that casual - I fear I'd be an
annoying flutterer, but the impression I got was that this was a good
and possibly preferred response.)

I do try not to tell my best jokes when we're walking on concrete. I
remember years ago at Fanoclasts that it became a way of counting the
evening's good jokes. "You missed a great meeting! Teresa fell over
FIVE TIMES!!!"

I remember one time when Patrick and Teresa were hosting a party
(out of town fans visiting? I'm not sure), someone told a good one, and
Teresa (who was standing at the time) toppled over onto Patrick
(seated). He was trying to stand her back up, but the angle was
awkward, and he said "Could someone give me a hand here? I'm having a
little trouble elevating the host!"

Teresa was still too weak to stand, but not to proclaim "Hoc est enim corpus meam!"

Teresa's official position on jokes is that you'd damn well better tell them to her. She awards points for making her fall down.

I recall that being part of the "Welcome to Viable Paradise" speech,
in fact. 50 points for making Teresa fall down plus the responsibility
for helping her back up. (I was not actually present at any
occurrences.)

#72: multiple points to Teresa for the perfect punchline!

The worst multi-level dreaming dream I've had was the one where it
kept happening so much that I thought I was going crazy and told my mom
to get me checked into a mental hospital or something. And then I woke
up, and told her I was going crazy and should be institutionalized. And
then I woke up....

My dad utterly refuses to even consider the possibility that I might
have narcolepsy--because of all the "fall-asleep-midsentence"
portrayals in movies, I suspect--no matter how many sleep problems I
have, or how often I try to point out that cataplexy plus falling
asleep on any moderately-long road trip or, often, in class plus, yes,
hallucinatory-type half-dreams when dozing off equals *something* that
should be checked out.

And I don't know how many times I've sat down to write something, or
to read if it's a more complex novel or I'm especially tired, tried to
do it for a few minutes, given up, and gone to bed. Another thing my
parents don't believe: more sleep doesn't actually help me be less
tired later on. No effect whatsoever, which is why there was a stretch
when I was out of school when I stayed up late online at night (because
the Internet tends to be stimulating enough that I don't even get the
normal kind of tired) and got up at my normal time, with a short
mid-afternoon nap, because although the total sleep time was much less
than my full-ten-hours-a-night schedule (plus, of course, naps), I felt
more rested.

Thanks for sharing your experiences--now I'll remember to pester my
parents about sleep studies again, instead of hoping the daily Mountain
Dew will be enough to keep me fully awake through *this* class period.

#72 - now THAT is wit!

Gwen: There is some evidence that the spectrum the monitor emits is
close to that of the "be awake" light of mid-day, which is why it's so
easy for so many to stay up so late.

I know that I find it shocking to see it's 0300 and I'm still up.

I think that I got Ms. Teresa when she was here at ConQuesT last
year, but she was sitting down so she just sort of sagged sideways. I
do not for the life of me remember what I said.

Terry @77 re Gwen @75

A recent study* found that there are special receptor cells in the
retina that specifically react to blue light. The cells promote the
removal of melatonin: good in the morning for wakefulness, bad at night
when sleep is desired.

The researchers examined blind people whose rods and cones didn't
work, but still had a circadian rhythm. They found these additional
cells were working, and thus weren't the same as rods and cones.

This study corroborates the use of blue-LED anti-SAD lightboxes and
also makes me think about the blue-light-blockers one can get for
computer screens. (Looking into a monitor-lit room at night shows quite
a lot of blue.)

----------

* which I can find if interested

Mycroft W @ 79

Of course, most people don't believe her (or me for that matter)
when she says that she has an allergy to perfumes and cigarrette smoke.
The "good" news is that when they say to themselves "she just doesn't
like the smell and is playing the allergy button to get me to stop",
her reaction is clear, visible, and scary. I just get snarky; they
don't believe me. Ah well.

My partner Eva has been getting allergy shots for more than 25 years
now* the same clinic. In the last 5 years or so they've had to put a
sign at the front desk that says, in effect, "Hey! Dummy! There are a
bunch of people in here who are allergic to perfume and cologne. Don't
wear it in here!" and still they get about 10% of their patients**
wearing perfume that makes Eva need to leave the building. And, yep,
it's the cheap stuff that's the worst.

* Theoretically, you're only supposed to need to get them for 3 or 4
years. The allergists don't like to talk about the fact that for some
people, the shots have only symptomatic effect and mild long-term
effect, they're not a cure.

** I wonder that they don't cough to death from their own smell.

Kathryn from Sunnyvale @ 79:

A recent study* found that there are special receptor cells in the
retina that specifically react to blue light. The cells promote the
removal of melatonin: good in the morning for wakefulness, bad at night
when sleep is desired.

(...)

This study corroborates the use of blue-LED anti-SAD lightboxes and
also makes me think about the blue-light-blockers one can get for
computer screens. (Looking into a monitor-lit room at night shows quite
a lot of blue.)

I struggle with this one: As far as I can tell, I have two "falling
asleep is possible" times in my usual circadian rhythm. One is about
6-7 PM, when I get sleepy if I avoid anything but natural light and
weak fluorescents. If I don't fall asleep around then, I perk right up
shortly afterwards and stay perky until usually about the 17-hour mark
from my waking that day. And in that perky window, monitor light is
simultaneously my buddy and my nemesis -- it extends the perky period,
which is good when I'm using it, but frustrates later attempts at
sleep. I haven't tried a blocking screen yet; I'm planning to when I
return, and I'm wondering what it will do...

The 6 PM shutdown sequence can make it pretty easy to catch back up
when I've had a really short night, but the catch is prioritizing
"dinner and my most productive time of the day" vs. "sleep in a way
that enables me to get up in the morning." I usually wind up with
dinner and productivity, at least until I can't go on any longer.

#80: It can be worse:

One of my friends has a brutal, totally invisible reaction to the
crap they put in perfumes that puts my blinding headaches to shame -
her retinas are scarring, from the top down. Irreversibly.

If I didn't know how my mother, my aunt, and I react to the stuff, I
wouldn't believe her, either; and I'm pretty liberal on the "trust what
people say" scale (to the point where if you tell me something and mean
something else (not counting irony and the like), don't get upset if I
take you at your word).

It's taken me a while to process Teresa's phrasing of not what I intended to be, just what I can be, but it's finally trickled through. No apologies to Frost on this one; he deserves what he gets.

Two roads diverged (as they so often do)

Not in a yellow wood, nor anywhere

Where I could look down each, and muse, and stare,

Compare the leaves and how the grasses grew.

Indeed, there was no choosing when they split—

I didn't really see the fork at all.

It's only looking back that I recall

There was a better way, back there a bit.

I could be telling this, in ages hence,

And sigh for roads not taken, chances lost.

But pausing to regret has its own cost

In present choices missed at my expense.

What I intended once, I cannot be,

But I am all that's possible for me.

Okay, that last made no sense (or maybe it makes sense, but wasn't what I meant):

- if you are saying something you don't mean "trying to be nice" or
"not to bother" or whatever - even if it's in a standard social context
(I did social avoidance while everyone else got the training; I'm sure
we all in this community know some hundred like that), don't be
surprised if I base my decisions on what you say, rather than what
anybody sensible would expect you to want. I have my share of wants
that nobody sensible would guess, as do a lot of my friends; why not
"you"?

- I'm sure that even if I didn't believe the lady in question, after
"no, really" I'd do what she asked no matter what I believed about her
veracity. There's disbelief, and there's discourtesy. Luckily, I'm not
even surprised by that particular manifestation of "modern world
syndrome".

abi, #83, very good, very thought-provoking.

Abi --

Every few months my youngest (now age 6) comes into our bedroom with
this absolutely pitiful inarticulate whimpering. A little bit of cuddle
helps him right out and back to (calm and restful) sleep.

The older boy (now 10.5) seems to have mainly grown out of it.

As a sidelight to my depression I get panic attacks, as far as I can tell, most of *those* occur in the waking hours.

And to bring this strangely more on-topic with the putative original
post, the SSRIs of several stripes that have been prescribed for me
have me feeling drowsy all the time, which is not something that is
really useful in the profession of software engineering and support.

But it beats the devil out of the state I was in before the
diagnosis of depression and the prescription of the SSRIs. (I was
described as a "high-functioning" individual and had always just bulled
through depression episodes. Then the years of undiagnosed and
untreated malady piled up and came close to destroying me. Thank you,
but I don't want to live through that again)

- Craig

Craig, are you taking the SSRI at night? That made a big difference for my daytime sleepiness.

Unusually vivid dreams, sleep walking, sleep talking, etc. run in my family with my father, my brother, and myself affected.

My father found my brother in a closet at my father's cabin once, in
the wee hours of the morning, fumbling around. When my father asked my
brother what he was doing, my brother informed him that he was trying
to find the valve to turn the water off. (He fixes broken water mains
for a living.)

However, the worst -- and only funny in hindsight -- thing from
either of them happened when we were backpacking when I was a kid. I
was about twelve, and woke up in the middle of the night. I sat up and
the next thing I know, my father clocks me in the head with a hiking
boot. I screamed and woke him up and he told me he thought I was a
squirrel.

I also sleepwalk. And talk in my sleep. And sometimes I dream in written words. (Seriously. Not images, or thoughts, but it's like reading a book. A very surreal book. I read my dreams.)

... And then there's my boyfriend has conversations with
dream-customers at night. I sometimes have a bit of fun by pretending
to be a particularly obnoxious customer -- clueless, rude, demanding,
etc. Since he has no "must be nice to the customer" filter on his
responses when he's asleep, I get to hear what he REALLY thinks about
obnoxious customers ... *grin* One of these days, I'm going to record
him.

Mycroft W: I'm shocked and horrified, and yes, I do believe it.

However, I'm really curious about something. With an invisible,
long-term reaction like that, how do they know the perfumes are the
culprit?

Florence Ambrose has been engineered with narcolepsy.

Does anyone else have repetitive dream locations, but not actual
dreams? I have recurring places in my dreams, places that are familiar
to me (but not) in the *same way* each time I dream them. But my
activities are never the same.

Dave Bell @ 90, the punchline to that strip has suddenly reminded me of my favorite music video.

Dave beat me too it.

I imagine if you have uplifted wolves around, all the ranchers will want one of those cut-off switches.

That strip is supposed to be sf/humor, but it's as thought provoking as it is funny.

B.Loppe #91:

Yes, to the point that I'm sometimes unsure of where I've really
been--sort of a deja vu situation that should show up only in dreams or
in my memory of them, but that sometimes crosses over into my regular
memories. Never the situations, just the places.

B.Loppe,

I have at least several different dreamworlds I visit regularly. I
sometimes dream I am hired on as a contractor to my former employer, in
various capacities. However, the location looks nothing like the actual
world location.

B.Loppe @ 91: I have several dream locations which I return to
periodically. My activities in those locations are generally similar
(as appropriate for the locations) but differ in detail.

For example, the campus of Carleton University has a set of
underground tunnels connecting all of the buildings, including the
residences. It's possible for a student to spend an academic year
without going outdoors. (I've occasionally thought that it would make a
good long-post-apocalyptic D&D scenario, with the players scouring
the buildings for resources while avoiding the undead professors and
grad students. Everything would be buried underground except for the
top of the former Arts Tower.) I had my first exposure to the tunnels
as a young teenager and ended up doing a couple of degrees at Carleton,
so I got to know the tunnels pretty well. The version of them that I
wander through in my dreams is 3-dimensional and topologically complex
-- a Habitrail for undergrads, I suppose -- but most of the odder
sections are quite consistent from visit to visit.

I frequently have dreams set in the subway system, or rather an
extension of the local system that doesn't exist in real life. Makes it
hard to find the correct stop.

The weird ones, for me, are the places that I know only in dreams:
they are familiar locations there, and so are the people I meet in
those dreams. (Not necessarily friendly - I've had some dream
situations that I'd rather not meet in real life.)

Many of my dreams are set in the house I lived in as a child --
until I was ten -- or in my grandparents' house that was next door.

I also sometimes dream things set at Sky Harbor airport (I worked
there for three years), for reasons I've never been able to explain.

And I have a lot of dreams involving places I've been
hiking/backpacking, particularly ones I've visited since childhood. One
common one, when I'm "spinning my wheels" in real life with something
-- struggling and making no head way -- is to dream I'm hiking in the
West Fork of Oak Creek and I'm walking forever and ever and the trail
never ends. Anyone who's ever hiked West Fork may understand where this
dream is coming from. Because it's a trail that can seem virtually
endless, if relatively easy & level walking, and it's often a bit
eery with towering cliffs. You get surprise thunderstorms down in
there, and I have -- many times -- had to hustle down seemingly endless
miles with thunder growling behind me, knowing it's about to break and
pour. That worry carries over into that dream world, evidently.

-- Leva

B Loppe @91:

Does anyone else have repetitive dream locations, but not actual dreams?

Yep. Places and people who go from dream to dream, with no analogues in the waking world.

I spent about five years where my dreams would include a segment
walking through a particular valley, wooded in places, not in others,
passing a certain set of rock formations. Then I figured out what it
mapped to in my waking life, and I've not been there since*.

I haven't ever figured out any of the people, though. They drift in
and out of my sleeping life without any daytime analogues. None of them
have lasted more than two or three years.

-----

* Watch me dream of it tonight...

I used to have dreams set in a specific dream version of Chicago,
with certain neighborhoods and locations which recurred from dream to
dream, quite a bit more pleasant than the actual Chicago; my dreams set
there continued for some years after I moved away from Chicago.

I still get occasional dreams where I'm back in college in Chicago;
usually these are the kind of dreams where I discover that it's the end
of the semester and I am registered for some course but I never went to
a single class or turned in any homework for it, and the final exam is
just starting. It often takes me a few minutes after I wake up to work
out that in fact I am not in college nor taking any courses, so I can
not be about to fail one.

I think I have a dream version of San Francisco too, from the period
where I used to visit my brother there often when traveling on
business. Dream San Francisco usually features in my other main kind of
anxiety dream, where I realize that I am due to catch a plane flight,
the flight leaves in minutes, and I have not yet packed, yet alone left
for the airport. I've never missed a flight in my life, but in my
dreams it's happening all the time.

abi @ #41:

My kids have had occasional night terrors; I think most kids get
them during some phase, and most of them grow out of it on their own.

Teresa's neurologist's comment is dead on the mark, “Sleep isn’t
just one thing. It’s a lot of different parts stuck together." I'd add
that children's still developing brains need to construct sleep from
those parts, as they grow up, and sometimes they go through periods
where the parts are not fully stuck together, before they end up
assembling them correctly.

The only recurring dream locations I have are ones that recur in my
real life, usually workplaces. I tend to have two kinds of dreams:
really wacky ones about celebrities (for a very loose definition of
celebrity--I've dreamt about everyone from Kelly Rowland or Sarah
Michelle Gellar to Randall Munroe or Arto Lindsay) and extremely
quotidian ones that I only remember didn't really happen if something
trivial contradicts them.

I did once have a long serial dream, with a continuing
story every night for about a month. That one was awful, because the
story was about everyone in my family trying to kill me. I'm pretty
sure I'd been having them for a few weeks before I started remembering
them while awake, because there was a time there where I was always on
edge around my family and didn't understand why. Once I started
remembering them, that feeling went away, but the dreams continued for
a while.

A.J.@ 89 - I haven't asked how she found out, but she can see
her sightlines changing (slowly, over time); it's just us normal humans
without permission to peer at or with her retinas that can't see
anything.

B. Loppe, #91, yes, I have that. Some places are weird constructs of real places and others are surreal.

Joann, Nancy C. Mittens, Joel Polowin, Laurence, PJ Evans, Leva Cygnet, abi, Clifton Royston, ethan, Mycroft W, and Marilee (whew!) thank you for replying! Sorry for the delay but I am trying to get my thesis written so I will have a few months off before starting another grad program in the fall.
I have brought this up several times in the last few years, in different groups of friends, and no one has ever said, "Oh, me too!" I am relieved that I am not the only one who has alternate dream worlds. I had hoped my intuition was correct that this was the right bunch of people to ask.

The thing I have always found the most striking is that upon waking, I can usually immediately tell which place in my life the dream place is connected to, and identify the ways in which the dream place doesn't map exactly - there's often an extra floor or wing to a building, or a door or staircase that doesn't exist in real life. In one particular case, a house I lived in has an extra staircase and set of rooms, and borrows the wrap-around porch from the house that's next door in real life. But when I dream a particular location again, its layout will be consistent with how I've dreamed it before, and I will feel a sense of familiarity from both recognizing the connection to real life as well as from having dreamed it before. I recognize things as "the dream university" while dreming.
Places like buildings in the dream also stay put relative to each other the way buildings in real life do. Sometimes I think I'd be able to sketch out a vague sort of map of the city and country where I dream but I am reluctant to try. I think it would turn out to be vaguer than I feel it to be and also in pinning down the geography that way, I might jinx it.

What's really odd is sometimes I have dreams that take place in "regular" dreamed versions of these same location, and I can tell that it's not the same kind of dream.

I've tried to lucid dream before, because I think (from description) that I should be able to, but I don't quite manage it.