My Internet's been mostly nonexistent this week so the lovely whipchick helped me out by jumping through the LJ Idol hoops for me. So you can find my story about God and leviathans here if you're interested in reading it.

Posted via m.livejournal.com.

Monday:
For English we have to write something every day this week. Mrs. L. says just write whatever we think of. Kids started asking right away how many sentences they had to write but I don't care. I'm not afraid of sentences.

Tuesday:
Today mom taught me and the little girl cousins how to play hopscotch, but I was more interested in drawing on the sidewalk than playing the game. Lines and angles and numbers are more interesting than jumping around. Anyway I get tired if I play outside too much. I would rather stay inside and read a book but Mom says that is not healthy. I say she stays inside but she gives me that look, the one that means "whatever just happened better not happen again" so I don't get to find out why it's different for her. Lots of things are different for adults than they are for kids though. Adults say "adult," for one thing, but kids say "grownup." Except me.

Wednesday:
Today I am reading another book about dinosaurs. I love dinosaurs. Adults always get really excited when I have to tell them I like dinosaurs. Their faces brighten up and they say something like "I liked dinosaurs when I was a kid too." There are so many who say this I don't know why they all think they are special, like they are the first person to ever think of dinosaurs. Then they say "My favorite was T. rex. He's pretty good, isn't he?"

I tell them my favorite is Oviraptor, and their faces look different and their voices sound different. "I've never heard of that," they say. Or "Raptor? Like in Jurassic Park?" That's what my uncle Sean said at the stupid family reunion I had to go to and waste a whole Saturday.

Mom shouts at me if I am sarcastic to grownups but sometimes I can't help it. I think she worries that I might seem smarter than someone taller than me. So I try to be careful and say "No, Jurassic Park had Velociraptors. They're totally different." Then I walked away, to pretend to be interested in my cousins playing hopscotch. They hadn't drawn the lines very carefully so the angles were all wrong, but nobody seemed to care. Except me.

Thursday:
Oviraptor's my favorite because it is a dinosaur with a story about scientists being wrong. Science is great but everybody makes mistakes, not just me, so I try to remember this when I feel bad. The mistake they made with Oviraptor is calling it "egg thief." Only one oviraptor fossil has been found, and it was right by a nest of what the scientists thought was a different kind of dinosaur eggs. They made up this story in their heads about how the Oviraptor was coming to steal the eggs of the other dinosaur and eat them.

Later on they realized it was just a story in their heads and the Oviraptor was probabaly just looking after its own eggs. Duh! I could have told them that.

Friday:
So anyway, it is still stuck with the name Oviraptor, egg eater, and no one knows much else about it. I think that is the other reason I have picked Oviraptor as my favorite, because who knows what amazing things could have happened in its life?

I bet it wouldn't like the name Oviraptor though. It's not really fair, it's like the time everyone called Anna a crybaby and she was only crying because her dog got run over by that car but she didn't tell anyone and then when she did they all felt bad about calling her names. Does anyone feel bad about calling Oviraptor names? I think I feel bad, sometimes. Even though I didn't call it that because I am not a scientist.

Saturday:
Mrs. L. said we had to write something every day this week but I don't know if she meant the school week or the whole week. Sorry, Mrs. L.

Sunday:
Actually a cool thing happened today, which is I learned how to make chalk out of eggs! You can't use the chalk on chalkboards but you can on sidewalks. Like for playing hopscotch. Or just drawing out the hopscotch and then not playing it!

What you do is you take six egg shells after you have used up the eggs out of them. You crush them up with a rock. Then you mix up a little spoon full of flour and a spoon full of VERY HOT water so be careful and you stir them all up in a little bowl and add a big spoon full of the ground up egg shells. You have to wait a long time to dry it. But then I can make a hopscotch pattern for my little girl cousins, and tell them they are walking on egg shells, just like those dumb scientists thought the Oviraptor was doing, but really he was looking out for the little ones, just like I'm looking out for my cousins.

Making lunch with Radio 4 on, as usual.

Only half an ear on Desert Island Discs, as usual. Until I heard, as I was dishing up my pasta, the beginning of Dvorak's Seranade for Strings in E, and am suddenly transported, almost painfully, to my late teenage years, which this melody reminds me of so forcefully.

I linger in the kitchen until the music stops, glad of the time travel music allows.

...but also glad I snap back to the present as soon as it is done. The past is not a country I want to dwell in.

Soggy and sore from hobbling too fast to catch a train. It was raining hard.

(Andrew tells me I'll make a good old lady: determined and ready to hit teenagers with my stick. "In my day we didn't have hairstyles!" he impersonates future-me. Probably won't take that long into the future though; I'm already curmudgeonly.)

Still, was worth it to go out to the theah-tah though. A last-minute ploy to cheer Andrew up after a really hard week. I didn't even recognize the name of Lady Windemere's Fan but I recognized "a cynic knows the price of everything and the value of nothing" and "we are all in the gutter but some of us are looking at the stars." Andrew had jellybabies and I had a glass of wine and we shared an argument about what other candy jellybabies are or are not like and to what degree. He tried to make me taste one but I refused on the grounds that the bag gave off that horrible smell that bags of Haribo do when you open them. "They're not that sugary!" he protested but we checked the bag: 71% sugar, and the next thing on the list of ingredients was glucose syrup. About as appetizing as if they'd been in the gutter.

Andrew's going to Liverpool tomorrow to see his little Beach Boy friends. I've got no plans so he said I should watch The Talons of Wen Chiang and write his blog post about it. He's nearly sold me on it too! He said it's like a Hammer horror with jokes. And it's got that "can something problematic still be good?" thing because it's got a Yellow Peril type character in it, in yellowface. Oh joy. O tempora o more and etc. Also the terrible effects that made the ridiculous Steven Moffat (if slagging off Haribo doesn't lose me friends, not liking Steven Moffat will!) say that Robert Holmes is "not even a good hack." Ha!

Sore and soggy. Man, I wish I had a bathtub.

There once was, as never before...

...someone who got it. She had heard all the stories and couldn't understand why it had taken so long for anyone to learn from this mistake. It was so obvious! How could it be so common?

Every time she heard a new story, she hoped it'd be different.

I remember something that our father told me and that is this:

It never was different. No one saw what she did when she heard these tales. The idea was fresh and waiting for her. Since no one else wanted it, she'd make it welcome.

This is an old story

They might as well all have taken classes on waiting for good lightning strokes, laughing maniacally, and employing assistants from walks of life that would ostracize them from most lines of work. They could have memorized from books those speeches about re-animating the very sinews of life, right down to the fact that they all share the subtext: "I was bullied as a child and there's no motivation like revenge."

I've told you what's coming

They always leave the brain until last! These mad scientists! They obsess lovingly over their stitch-work as they piece the bodies together. They wait for just the right dramatic moment to throw the lever (why is there always a big lever? she wonders), but they treat the brain just an afterthought! The seat of all intellect and reason, the thing that separates us from the animals...! "Oh well we'll just grab any old thing from out of a jar"? This made no sense!

There was, there was not

There wasn't going to be any of that nonsense from her!

Abby started with the brain. How hard could it be? When she considered how often she couldn't remember to return her library books on time, or how unbiddem memories would suddenly pop into her mind (waking up in her grandparents' bed to hear the murmur of adults talking and laughing over their grown-up card games in the next room, feeling all warm and cozy and well-looked-after...it made her sad now to remember it), the human brain wasn't itself very good.

The trick is, you need the glial cells. You can't just string together neurons out of bits of a broken Slinky (if nothing else, she knew that because she'd tried that when she was a kid: knowing she needed wires, and with nothing better to hold it together than glue, stickytape and used bubblegum; she'd lovingly rolled it in the dirt when it got too sticky and added fresh bubblegum when it got too dry). Typical science: we can see the neurons flashing on and off in our fancy MRI machines. They're all pretty, the rest of this might as well be grey goo, so fuck that.

Fuck them. Like magpies, you flash something glittery in front of them and that's all they pay attention to. Even if they don't know why they care about it.

She started with the brain, and the assembly language. She started with the raw ingredients: carbon, oxygen, hydrogen, all the greatest hits of the periodic table.

She thought of the Slinky and bubblegum, and crafted lovingly. The best brains are made with care and attention.

Her life had started with the joy and grunting of her parents. Few want to contemplate their elders having sex but it's how we all got here. Except for this. She had joy, but no grunting, and no fellow parent. This creature sprang fully-formed from her intellect.

They have reached their goal, let's settle

She hadn't bothered with all the wrinkly, fiddly bits but she knew she'd created a woman. She named her Norma.

...and three days they ate, drunk and had fun

She taught Norma to eat, and then how to cook. Norma liked to burn toast, and boil eggs (already putting her miles ahead of Abby's ex-husband on culinary usefulness).

And I was there, and drank mead and wine

Abby put away her scientific instruments; they'd served their purpose. The two went to museums and football games and concerts. She taught Norma to talk, and then to read. They shared a joy in words.

And they lived well, and we lived better

Their first kiss was over an Usborne Very First Reading book.

So blissful

I have no energy to devote to writing anything about ME Awareness Day today, but I wanted to say something. Here's what I said last year.

"This week I have been mostly screaming," a Twitter chum of mine said on her blog today.

Mainly inside, occasionally out loud, and I hope not very often at other people. (But don’t check that, OK? Just in case.) I didn’t want to tell you that. You very probably didn’t want to hear it. That’s the bloody pain about this bloody illness, I’m not allowed in good conscience to keep suffering in silence. Can you imagine the world if every time someone asked ‘how are you?’ they got an honest reply? Eeek! I’d imagine ‘Yeah, all right, thank you, a bit tired’, is about as much detail as anyone would want or expect. But we with ME are supposed to TELL THE TRUTH because we have to raise awareness! We’d be social outcasts, if we actually ever left the house to have a social life.

Today is ME Awareness Day.

ME means Myalgic Encephalomyelitis, which would mean pain caused by inflammation of the brain or spinal cord, but in practice it means controversy. Some people think Chronic Fatigue Syndrome is another name for the same thing. Some people think a virus might cause it. Some people think it doesn't really exist, including a doctor at the GP's surgery of a friend of mine, who was so unhelpful to her he contributed to her having to be hospitalized recently.

The nature of ME means that a lot of the people who live with it will find it difficult or impossible to say much to raise awareness on this, its supposed awareness day. For this reason, and becasue of what I was saying earlier about the importance of caring about stuff beyond what immediately affects you, and because it does in fact affect me as I have real-life and internet friends who have ME, I wanted to say something today.

Awareness is a tricky issue. I remember not long ago Andrew sharing something from an autisic person's blog about autism awarenes. While a lot of that is specific to autism, a lot of it highlights the problematic nature of "awareness" of any kind of condition.

"Awareness" is a vague goal... Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people...

Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories...

Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves.

With only a few words changed -- the experiences and stereotypes are obviously different for people with ME than people on the autism spectrum -- I hope you can see what I mean.

And yet as a person who does not have the thing that today is meant to be "raising awareness" of, I am conscious that I can't speak with authority on what people with ME need or want or think. (Though I think a lot of Chronic Illness Cat would be a decent start.) All you need to do to be nice to people with ME is to treat them like people. Take them seriously, trust them to know what's best for themselves, offer help unobtrusively when it seems appropriate, invite them to things even if you're not sure they'll be able to come because it's enough that you want them to be there.

All this seems obvious but can prove bizarrely difficult for some people, who only see the condition: for instance, my parents met one of my friends with ME, and since we were going out in town she was using her wheelchair because her pain gets a lot worse if she walks too much, so now my mom calls her "the one in the wheelchair." ME can have a big impact on a person's identity because it forces people to sacrifice a lot of things that are important. As my friend greyeyedeve says about having to reconsider abilities and talents: Sometimes this means coming to terms with a significant change in the way you see yourself, which, if work/study has been important to you, can be devastating. Sometimes it means changing or relearning the way you do things or starting something new and different which can be scary, even for people not currently ill or disabled.

It is a solemn thing, this awareness. There are things to celebrate and be glad of, some of which she mentions further in her articulate and moving post. There are things no one can fix or help, but there are a lot of things we can all use this awareness, newfound or not, to do: to be kinder to each other, to be more respectful of people, to be mindful of our place in the world and all that we have and all we can contribute.

You can read a lot more, and find a lot of links, about ME and the community of people who care about it by following Twitter hashtags like #May12.

Oh give him the best wine
And bring on the nymphs
He'll grin all the time
And say "is that all there is?"
They want it now; they want it all
'Cause the satyr can never be sated at all!

From haunches to hooves
Their dancing is crazed
Pipes play, not to soothe,
The savage beast to raise
You can't knock them down, it's you who will fall
'Cause the satyrs can never be sated at all!

When wine and dreams are plentiful
Wjen you're always chasing girls with your friends
When ecstasy is holy and beautiful
And the party never ends
Look down for your hooves and horse-tail and all
You're the satyr who can never be sated at all!

I think it's interesting that one of the recipients of a retinal implant to restore vision is quoted as saying "I have even dreamt in very vivid colour for the first time in 25 years so a part of my brain which had gone to sleep has woken up!"

The implants are designed for people with a degenerative condition (although the RNIB says complete blindness is uncommon), but nothing is said about whether this person was blind at the time of getting this implant -- but it doesn't sound ilke e could have had a lot of sight, if being "able to detect light and distinguish the outlines of certain objects" are encouraging results of the operation. The condition seems to be indicated by lack of night vision or peripheral vision; nothing much is said about losing color vision although the disease can affect the cones (which perceive color) as well as the rods (which give us night and low-light vision). It makes sense that a loss of color vision could lead to dreaming in black and white, but I can't assume that's what happened in this person's case. Some people with no sight at all do "see" in their dreams, and just as the brain coughs up old memories when its dreaming, it can use old sensory data even if it's no longer getting new stuff of that sort.

People are strangely fascinated by whether dreams are in color. Google brings up tons of results to people asking whether we dream in color, and the results are contradictory: "Yes." "Sometimes." "Some people do." "Everybody does." Even "Dreams are black-and-white during the period of black-and-white films and TV in the first half of the twentieth century, but before and after that, dreams are in color." My favorite is "even if the media did not change our actual dreams, they were nonetheless a principal cause of our change in opinion about our dreams."

Of course all these opinions presume sightedness. The internet is also full of people asking the question "What do blind people dream about?" It seems ludicrous to me, but then I suppose I don't have quite the vision chauvinism as a fully-sighted person. The answer is, as I suspected, the same things as everyone else -- their daily lives, their memories, and so on. It seems people who had some sight beyond the age of seven do experience visual imagery in dreams.

Of most personal interest to me was that while less than one percent of sighted participants surveyed in two previous studies reported experiencing gustatory, olfactory, or tactual sensations in dreams, all but three of the blind participants in this study reported experiencing them. I was surprised that the number is so low in fully sighted people -- either the study is flawed somehow or visual chauvinism is even stronger than I think! -- because my dreams definitely use those other senses.

It's because of this connection between people's waking and dreaming thoughts and experiences that I was surprises eomeone whose vision was restored to the extent that e could discern light from shadow and the edges of objects (things that are among the easiest to see and thus common among people with low vision) was suddenly dreaming in color (which leads me to assume e was dreaming in black-and-white previously, rather than no visual images at all -- both because I'd have expected em to put it differently otherwise (the comparison would've been "now I can see objects [where before I couldn't]" rather than "now I can see color [where before I couldn't]") and because es degenerative condition probaby gave em sight for long enough to fall into the category that the science tells me would leave a person with visual dreams).

But most of all, on reading this person's reaction to es new sight, was em saying so matter-of-factly, that the direct and obvious and simple cause of es newly-colorful dreams, was "a part of my brain which had gone to sleep has woken up!" I smiled because I recognize this: it was once explained to me (by someone who was supposed to teach me how to cross roads without getting hit by cars, rather than any sort of medical professional; they never talked to me like a person) that perhaps that's what happened to my own brain. Nothing changed in my eyes or optic nerves or visual cortex (as far as medical science (ptooi!) knows anyway) between my being born blind and my suddenly being able to see in a way that was obvious to my parents and the specialists) so it's like my brain woke up and realized it could make sense of these (no doubt extremely low-bandwidth) signals it was getting.

The metaphor of waking up is a hopeful one, much better than the usual ones about non-fuctional parts of the brain being "dead." It's nice to think that all the shoddy parts of my brain (even though I know better) are still there, perfectly fine, just slumbering and waiting to wake up and spring into action, like King Arthur or something.

Originally posted by theljstaff at Help Us Support Planned Parenthood