Archive for December, 2007

Soldering, baking, and a pain report


spoke POV project
Originally uploaded by Liz.

We soldered and messed around with these light-up wheel kits all of yesterday! Imagine how sad we were when our LEDs didn’t light up. Could it be our extremely amateurish, blobby soldering? Did we damage some components? We need expert advice!

I made soup again, and two loaves of bread in the bread machine. Housecleaners and pest control people came. So our house is sparkly and slightly less ant-y.

People from out of town don’t understand that you can’t do a damn thing about the ants. It doesn’t matter if you have food out, or if there are cracks in the tiles, or if you battle the ants daily. They come in for water, warmth, or just to hang out because they think we’re cool. In California, there are just rivers of ants. They’re all related, and live in enormous underground colonies with millions and millions of ants that are impossible to destroy. It’s not like pouring boiling water over the anthill is going to do it. The ants we live with probably are part of a colony that runs underneath an entire city block. Anyway, if you live here, now you know why our roses die.

On the other hand, our house probably won’t be having termite problems, since Argentine ants eat termites.

I’ll just stick to the occasional futile visit from pest control… and the more usual spraying with Dr. Bronner’s Peppermint.

Hamster is here for a sleepover with Moomin! And soon Quilty & M. will be over to hang out – I can’t wait to see them again.

It’s been mostly eating fancy food, loafing in bed, mild cleaning and bustling, and as I said the marathon day of soldering, here.

I drove Zond-7 up to the city on an errand and back and while there we had a bizarrely nice moment eating tacos in the car on 24th. I can’t explain. But it was the sort of thing I usually do on impulse, alone, so that it won’t annoy anyone else. Instead of feeling like I was imposing my vile need for tacos on a person who’d rather be doing nearly anything else, it was a weirdly nice shared moment and made me have funny cozy flashbacks to times I spent drinking hot chocolate from a thermos in my dad’s Toyota in between sledding and toboggan rides in 1975.

Chefily was (is) here! We hung out a bit and hot tubbed! She’s going back to Moscow soon…

Pain report! The warmth today helped me a lot. I kept the house warm and it was a sunny day. It helped that I didn’t go out. The last few days when it’s been cold, I’ve been noticing things like, if I have my feet on the footrests of the wheelchair, even in two pairs of socks. the pressure and cold of the bars sets off painful spasms in the bottoms of my feet and up through my ankles and calves. It was very apparent. My hands hurt a lot. Last night I was walking around a bit in the evening but then after I got out of the hot tub could barely move and my calves and some sort of inner thigh muscle near my knee went crazy… i collapsed in a lot of pain. Yesterday (before the soldering) and the day before, my left arm had a lot of spasms (sometimes painful, sometimes just odd-feeling). Little ones in my hands and then big deep weird ones in the back of my upper arm. The hand pain I can mostly ignore but am not having very good grip strength in one hand… Early this morning I woke up with something that has never happened before. My entire quadriceps muscle was in a horrible spasm and i felt like i was going to barf. The feeling was oddly like how my legs felt during labor during the “transition” phase. I woke up Zond-7 and got him to gently straighten out my leg. Once I was rolled over I could control my leg again. But before that… not.

Zond-7 said I don’t really whine much on this blog or on any blog. (He must have a high tolerance….) And that I should not talk about it as whining but that I’m open about what I’m going through. Though… often I’m really not that open. Or when I am, it’s not like people hear it. It becomes background noise, or else people want to believe the best thing out of a range of things. They want me to be okay, or improving. I am adapting better to the situation and to rapidly changing abilities and pain levels. But I am not improving. I’ve bounced back from a few awful rock bottom days or weeks, but over the last 9 months I don’t feel any improvement in what I can do functionally. Instead, my grip on capabilities and independence feels tenuous, and it seems like a new bit of me hurts every few days.

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Scared and unsure

My left leg is increasingly messed up and it scares me a lot.

It twitches and spasms and isn’t working right, and is incredibly painful. Like the other leg, the long muscles or tendons or whatever go off like crazy. And the sort of ants-in-pants ripply twitchy feelings as well. The ankle/foot drop part isn’t as bad as the right side. The thing wrong with my knee on that side is wrong again, which seems to be spasticity and probably was, all along. It’s like ropes or rubber bands attached to things, inside my leg, pulling all the wrong ways. Or like wearing torture boots made of squeezing snakes.

Am I getting worse so fast? Or is the baclofen doing something negative as well as positive? Could it be relaxing/unspazzing some things and setting off other cascades of neuromuscular activity and pain?

It does let up, I think, when I take it extremely easy and don’t walk around too much, but that has its own frustrations and I also stiffen up if I don’t move around enough. Everything seems like it’s changing too fast for me to make any sense of what’s going on in my body.

I wonder whether to increase the baclofen faster, or go off it completely to see if it’s really making a difference – making things better or worse? I don’t feel like I can tell any more.

Arms not feeling great – either – there are some things I just don’t like to talk about at all –

That foot brace on the right side would be a relief. The clinic isn’t scheduling new patients till next Wednesday when someone comes back from vacation.

I’m still thinking over my long talk with the neurologist and trying to process it. Very difficult.

Every time I think of my in-laws’ attitude I cry some more in anger and frustration. I want to fight it out with them. It’s hard to know they think of me as they do. On the other hand, I felt it — and I’m glad I know it up front — I’d rather know.

Other than dealing with pain, and being afraid now and then, life has been very sweet since Christmas. I’m really happy.

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Squeaky wheels

IN the last few days I had a very peaceful relaxing time, read, took notes on The Orphan’s Tales, played a lot with Squeak and eToys images (the Smalltalk based stuff that runs the OLPC), eaten leftovers, blogged rantily in private and wrote stormy emails I’ll never send (to and about my in-laws) and puttered about with kids and presents. Squeak dazzled me for a while and I still feel its pull and yes, it sucked me instantly because I love flailing around to investigate programming environments like that. I tried for like 6 hours to put moving eyes on a BlobMorph. Then looked up and realized that not only did I still not know how to do it, but if I did, it would be awfully useless, no matter how much fun I have along the way. Anyway, probably better to go back to Python and the fun of pair programming with that…

Zond-7 got me SpokePOV kit, better than hokeyspokes but will be a couple of days of electronics project for us to really do; we talked about ideas with wireless or bluetooth so that you could text your wheels… and ways to bling out my exoskeleton/chassis with gumstix (tiny tiny linux boxes) and things like that. I am walking limpily around the house sometimes without crutches but then my leg seizes up again.

I went to the neurologist today again and we had some more open talk about things, which was very good and interesting but also very difficult. Each time i feel like I am swimming more and more bravely into it. He talked frankly about going to the clinic and about how he thinks als/pls was a spectrum really and basically i should not freak or be surprised if I “flunk” my emg and get reclassified as ALS since clearly everything is long developing. He was strongly encouraging me to up the oral baclofen a bit faster and thinks that it will control my spasticity and thus I’ll be walking much better again. We talked about the years of recovery and then of walking much better, and he said the clinic will be interested and will also know more about that, but he thinks that it is that there is scarring (the “sclerosis” but that mine is still fairly minimal, and that is why it is so much better when the spasticity calms down. and the long gradual recovery kind of a long rehab path or gaining strength without triggering off nasty spasms. We talked more frankly as well about swallowing problems. I showed off by going in on my forearm crutches. Now I’m hurting. It is harder to do everything in the cold.

I am doing the bicycle thing for PT (a small set of pedals with no resistance on a low frame that fits under a regular chair). it hurts. I am a bit eager for the spring assist ankle-foot orthosis which sounds like it will hold me foot in position. The neurologist also talked about how spasticity works and for example that my gait is sucking because of spastic hip muscles (i forget what he said about extensor and flexor… doh!) and that the muscles in my tibia/shin are contracting but so are the back ones in my calf and guess which one is stronger and about 4 times as big – the calf – so that side wins and my foot gets pulled downward, and my tibial muscles are fighting with it every time I need to flex my foot upwards.

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A brief mention of The Orphan’s Tales

The Orphan’s Tales: In the Night Garden was one of the best books I’ve read in a while. Now that I’ve read book 2, Cities of Coin and Spice I feel comfortable elevating it to my golden bookshelf of great books of all time. It is a classic “Mirror for Princes” or book of moral instruction robed in the most entertaining sugary stories. Beasts and monsters, fantastic quests, myths, and the subtle moving of relationships over time, mix with global politics and the pleasure of creation of worlds, & with a healthy dose of messing gender politics and narrative. It makes everything else look clumsy. I’ve read the Pancatantra, different versions of Kalila and Dimna, the Mahabharata, various translations of 1001 Nights and the Ramayana, all the Icelandic and Norwegian sagas you can think of and more, and a wad of the longer Chinese novels as well. Long, complicated novels with vast arcs of interrelated stories! My obsession! It’s like savoring the endless complexities of a drink of water when you’re dying of thirst. This is a deeply satisfying book. Sugar and good medicine, as a mirror for princesses should be.

I am annoyed at the misunderstanding of it as a collection of fairy tales. You could read it that way… and it could be lovely and satisfying and entertaining that way too.

But damn, the beautiful writing! The sentences that make me swoon, one after the other! The complicated structure! The way so many characters have tendrils into other stories 5 layers deep and 500 pages away! The way that you see the same story from multiple tellings and points of view, not in a bludgeon-you-over-the-head way but sideways so you have to think and remember and look back to figure it out, because an echo has caught your ear or eye.

I’m rereading it for the third time and figuring things out while taking notes. I had to, to figure out whether it was always the Wizard Omir or not in some of the stories, and who everyone was, and when (I am not quite clear on the when of things as the Caliphates are confusing, and Ragnhild and the wars.)

The sources are pleasantly diverse to anyone who loves things to be non-eurocentric. Yes it has central european fairy tale roots, and arab and persian, and norse, and a bit of chineseness and lots of hindu mythological/philosophical/literary sources. WITHOUT BEING STUPID about it. So rare!

You will notice that barely anyone is white and if they are it is a matter of remark that they have sun-colored hair or milk-skin; it is good too to read something where the baseline isn’t white white white.

If I could just point out… what Valente has done is pretty fucking amazing. The Pancatantra for example does nested stories with dazzling splendor and with the beautiful layering of meaning & message that builds up so that by the end you are likely taught some part of the complicated lessons of how it might be wise to treat other people well and behave morally or whatever. But the characters from the Friends book don’t resurface transformed by time and adventures and new relationships in later tales – as they do in The Orphan’s Tales. In My Name is Red, another very lovely but also very maddening-because-so-sexist book of complex nested stories that pack a political punch, the stories are interrelated and from different points of view, unlike the 1001 Nights or older tales, but Valente’s book is actually larger in scope and twice as complicated. She kicks Orhan Pamuk’s ass around the block and back. May I live to see her Nobel Prize… surely she will give a better speech than Lessing’s vague Luddite rant which I can’t snarl about enough…

(What I mean about Pamuk and sexism is just utter awkward blindness, like you’re reading some fabulous lovely book and then realize in midstream or right away if you’re tuned in, that there’s one female character out of a cast of hundreds and she’s THE LAND or THE NATION or something, totally smurfette syndrome, with added annoying nationalism that is also romantic love. Pamuk suffers from it, badly. Valente is the antidote to it – I’ve been waiting all my life to read this.)

Valente deserves world level recognition of these books. I have a lot more to say about this and will be posting something more coherent on the feministsf blog and wiki. My notes while reading developed into a sort of glossary of the characters and some different outlines of events. They’ll have massive spoilers, and are meant for the pleasure of re-reading with increased understanding – not for use while reading the first time unless you want to be a dirty rotten cheater.

And all written with the most beautiful exquisite sense of humor!

All this is mostly about book 1. But my god, in book 2, The book of the storm! The coins! Valente is not fucking around or pulling any punches here.

Could someone please do me a favor and get Peter Beagle to read it just to make him faint with envy and pleasure? Twist his arm, please. I only know him a little and not well enough to persuade him. But well enough to want to give him a present.

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The view from the parking lot

Just now I had a feeling that I remember very well from years ago. Ii’s the feeling of staying behind, of being left, a vivid memory of what it was like to cheerfully stay behind with my book or a pen and notebook in the parking lot while other people went hiking along a mountainy trail. There was an element of sincerity possible in the cheerfulness, but also being wistful, resentful. Mostly, acceptance. And developing some measure of grace about it so as not to spoil anyone else’s good time (after many times, I know, of being the downer and the spoiler and the awkward burden.) I’ve written before about how I learned a little patience, something I unlearned as fast as possible once I didn’t need it anymore, but that I’m certainly requiring again in order to get along well in life.

In those redwood forest and beachside parking lots, observing birds with binoculars and making little sketches of my own feet, I recognized then, this will happen again and if this is the worst of it, I’ll be very lucky.

Or things go a little wrong, and I realize that I don’t have any control. I read a good, funny email recently from one of my mailing lists about the feeling people have when they fall. A woman who has fairly advanced upper motor neuron disease was describing how her leg was sliding slowly off the bed, and she couldn’t control it, and she knew it would pull her off completely, and she’d fall and be stuck. She had plenty of time to contemplate the fall as it happened, so she pictured how she’d be stuck in the little alley between the wall and the bed, and she laughed pretty hard about that. Then she laughed some more as she laid there luckily with a phone reachable, as she has a backchannel line to her local EMTs, who are used to coming and rescuing her in those situations and who tease her about her strategy to meet hot firemen and paramedics. I haven’t been there in the alley of floor behind the bed, quite, but I’ve been close to that, and know what it’s like to wait. You just wait. You think. You pass the time, and watch the light on things, and your mind can go just anywhere. It’s not so bad. I have fairly boundless trust that someone is coming, or coming back.

The luckiest you can get is to have people who don’t mind, with that same level of sincerity, being left behind with you, people who have experienced enough so that they don’t mind letting go of a possible glorious moment and instead having just an okay moment. Making do, enjoying what’s possible, with a sense of humor and of artistry. Not in an “oh-well” way, but more like an artist. You look at the materials you’ve got, and you create the most fantastic thing possible with them. I’ve had some transcendent experiences in parking lots looking at rocks and weeds. Maybe this is more possible if you’re a poet. Poetry in fact is traditionally well suited to the extraction of goodness from any situation, to be written in blood in prisons on scraps of toilet paper, or composed and memorized when nothing else is possible.

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A stalker from a bad dream

Another nightmare last night. I was at a party, a sort office party, and this guy (RL guy) who always annoys me (by having totally wrong boundaries and acting like we’re best chums with an edge of resentment that we’re obviously not) crossed some sort of line by cornering me and pouting and saying that I wouldn’t talk with him and that I obviously didn’t care about our “relationship” and was a shallow bitch, and couldn’t I be nice (while edging closer and putting a friendly hand on my arm) and I thought “Am I going to just take this so as not to be Rude and not to Cause a Scene?” So in the dream, I stood up and went ballistic. I explained to him that we didn’t have a relationship, and that he was badgering and silencing me and trying to embarrass me in public and that not only was he personally annoying and repugnant, but he was politically fucked up because he knew how to yank women’s chains to manipulate them, through guilt and fear, and to demand & suck out all their attention, and I wasn’t having it. I explained at length… loudly… at this (dream) party… following him from room to room for the harangue.

But then the dream shifted and I was in some different institution, like a big company or a university. A guy delivered a thick envelope for my friend Leeanne, stuffed with papers, not sealed. I brought it to her in another room and she freaked and said “That’s my stalker – OMG – We have to get out of here – It has to be very clear that I never opened this envelope. Can you take it to the authorities… ” I took the envelope and went out, but the crazy guy was there and demanded to know if I’d read what was in it. He began telling me how great I was and then asking me questions, confusing me with Leeanne. He started to grab at me and I knew suddenly he was terribly dangerous. I ran out of the room, evaded the stalker, and to an elevator. But no one “official” on the first floor would help me. There wasn’t time, I couldn’t prove anything, I kept saying quietly to people, “You have to help me, this guy is crazy, he’s coming right after me, I can’t yell for help or accuse him openly or he’ll kill me before anyone helps.” As the guy approached he’d un-crazy himself a bit and smile. NO one would help. There were no guards or police. I finally tried the loud speech tactic when I got far enough away from him that I could do it. (“Collective action!” but no, didn’t work.)

The guy kept catching up, attacking me. trying to hold my arms still. Finally the scene kept shifting to replay differently, long enough so that we were in the street, and I was in my wheelchair. He attacked and I fought back. I still had the envelope. When he tried to twist my hand, my leather wheelchair gloves stopped him from bending my fingers backward, and I broke some of his fingers, and elbowed him in the gut, to escape again. In the dream, I thought “I’m going to have to visualize how to fight from the chair, to be prepared for things like this.”

When I woke up, I had an entirely new and amusing thought, which I’ll blog over here, about strollers and wheelchairs.

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Warm and cozy with my electric blanket

I’ve been under here for a while and it feels like I just can’t get warm! Maybe a hot bath.

I went shopping for presents. While I was at it I got myself Book 2 of The Orphan’s Tales. Now I have two… TWO very juicy books to read that will blow my mind and absorb me completely. This one, plus Blood in the Fruit. This year I did not do much for holiday prep. But I’m having people over and will cook. Friday/Saturday I’ll make cookies and maybe pie.

Rook’s parents are coming for a few days! Full of medical advice which I appreciate but which I am going to ask them to put a lid on it in front of Moomin and that I am super happy for their advice and recommendations and referrals to the friends of old medical school colleagues but that there is to be NO TALK OF NEUROLOGY in front of Moomin…

I also prepared myself with things to say, like “I’d like to change the subject” and “I’m not going to talk about that now, thanks.” It is usually easy to deflect things away from me by asking about their work or interests so I’m keeping that in mind.

And if they want to do lots of things, they can… but I can’t and won’t. I can go out, obviously, but I am pretty hard assed about going out to places *on my own terms* and with a lot of control over how and when and being-able-to-leave if I need to. Could I go to Monterey? Yes I could… especially with lots of Vicodin or something… and I love to go there… but 2 hours in a small car with 5 people would be unpleasant and would hurt my legs, and then the crowds, being bumped and tripped over, and having to cope with what everyone else wants to do, eating and shopping and all that. So if I went there, I’d plan to go on a weekday when it might be less crowded… Not on the Saturday before Christmas… and probably with an overnight stay.

Oh, my amazing inlaws! I’ve never been able to keep up with them and their giant ambitious energy and plans. They’re 70-something and they don’t slow down!

Last night Zond-7 and I spent the night at his new place. I like his roommates a lot. Resolution, to bring them some good stuff like fancy coffee and cheese and maybe bake some bread to contribute something back into their warm householdiness. They were so super awesome and share their food (and their nice coffee!) I held their baby, Beowulf, this morning for a bit. He’s sort of bouncy and squirmy and jolly like my nephew Mr. Pants! They should totally have a playdate.

It is a little rough to feel like I have a million errands, but I have to do like one errand per day. Maybe 2. I keep cancelling and moving appointments, as I realize I have to keep my pace of life a bit slower than usual, for now.

Stuff I need to do:

- neurologist for prescrip, forms, orthotist referral
- Moomin’s class party (Rook could, but I want to make a rare appearance)
- wheelchair store at least twice; once tomorrow, once next week
- shop for turkey, xmas dinner stuff
- make giant tin of cookies
- would like to make pies but maybe will buy them to save energy
- faxing things
- more phone calls (bah)
- set up orthotist appt?
- make sure COBRA is in place for early January (Rook is doing this part)
- make CDs for people for more presents

Yesterday, did Moomin’s class holiday party, set out food and helped with “activities” etc and stuffed folders for the teacher. I got my wheelchair handles chopped off at the Chair Store which took forever but was awesome and so worth it and also nice of them to just do on the spot right away. Then off to SF where I lounged on the EFF office couch and then went to see Golden Compass which I liked very much without a ton of criticism (unusual for me with movies especially movies based on books) and to the wine tasting party where I actually had fun (also rare for an office party that’s not even my office) and met some awesome nerds, R. and S. Everyone was a bit tipsy. including me.

I blame general holiday good cheer for my untactful behaviors. Also did not quite mean to be so heinous when I greeted that dude with the purple hair by saying “Hey! I remember you! We made out once, at that street fair or parade or whatever it was! With some really hot chick!” unfortunately right in front of his girlfriend. I might as well get that “I fucked your boyfriend” tshirt I’ve always wanted.

Sorry to be a bit dull on-blog but this is one of those entries just so that I know what the hell I’m up to, without a lot of zing or inspiration to it. That last bit above spiced it up a little, at least.

Zond-7 and I had such a nice time… Bliss… We got up reasonably early and had coffee with computers in bed. His new place is in that stage where you only have a suitcase full of stuff and so feel curiously free. All the junk and bills and clothes and things that need maintaining are left behind in the old apartment. A bunch of it will stay behind, like molting.

Also, the visit with in-laws is going fine. Everyone naps (they are old!) and putters around. We had fun in the toy store, had lunch without my feeling grilled about medical issues or anything, so I’m wildly optimistic that things will continue to be lovely. Rook is puttering with his dad outside. I’ve wrapped presents for everyone! I got Rook a g____b___ and some h_____ f______ ____z____ and Zond-7 a _uz__ __th____ and Minnie some you-know-whats (as usual).

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Our city is not friendly

A few days ago on a whim while I was thinking of the things I have not done and would like to do, I wrote off to some Spanish immersion schools. Most of them are a bit too “studenty” sounding, ie. meant for 18 year olds. But what the hell. It wouldn’t really matter; I just thought some structure and a week or two of immersion would be good for my Spanish.

I got this reply from one school, after I wrote to ask them if there was an elevator in their building. The photos on the web site made it look like a building on a flat street without stairs and it was multi-story. So, I asked, and got this answer:

The Institute and the some host families are wheelchair friendly… the only problem is the City of Puebla. The city of Puebla is not friendly at all so that is the reason that we do not accept students that are in the need of a wheelchair.

Don’t you love the part about how they’re wheelchair-friendly? So friendly that they don’t accept wheelchair-using students!

Now that’s friendly!

The whole Ciudad de Puebla — friendly!

*snort*

I wrote back to say that they should not make a policy not to accept disabled students. Instead, they should provide specific information about the buildings and town, and let people make their own decisions.

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The more prosaic diary of what’s up

So I decided I’ll go to UCSF to their ALS clinic, and get a 2nd opinion or workup or whatever from them. They can use all the same tests and MRIs and stuff. I might just have to have an EMG – sounds like a somatosensory evoked potential is no picnic, but something like that will get done.

I walked a bit again today with crutches, and sat up a good part of the day. Went out to lunch with and Jo (I’m completely obsessed with this pho place in Deadwood and its totally delicious noodle soup) and then came back here to talk poetry with D. (lying on couch with an electric blanket) and THEN Rook and Moomin and I went to Jo’s house to do a little minor clearing up and moral support which I hope helped. It is a dreary thing to do alone, moving, even when you’re not having that feeling of salvaging from the wreck.

Rook took kids to our house, and then when Ep’s husband came over around 5 to drive Jo around town, they dropped her son and Eliz. off at my house too. Everyone played super peacefully with rocket launchers and “guns” that were actually my crutches, & then in elaborate gladatorial games with the tiny remote controlled cars from China, MC-ed by Eliz and fenced off by a coliseum of couch pillows. I watched from bed.

I thought I would miss the concert but then just in time all the kids got picked up. WHEW.

And what a fabulous feeling with my lap blanket tucked in around me, whooshing down the street in my new ultralight wheelchair, down the BRAND NEW RAMPS.

I’m very lucky…

It was all a bit exhausting, but I mostly stayed very warm. I’m hurting now despite baclofen. My left leg is spasming a lot tonight, mostly the calf and foot.

I have to say, that the feeling of trouble swallowing is more intense the last few days, and I never know if it is just in my mind… or if it is really worse. I guess if it gets really-really worse, I’ll know it. I have had increasing trouble in the past years with swallowing when I ‘m lying down or on my back. For example if getting a massage I have to turn on my side to swallow. I guess that is not quite normal? And much of the time I have to sort of think about swallowing food. I do it by leaning forward just a bit and stretching out my neck. Is that …. well, I know it must be odd, because I don’t remember ever thinking about it or noticing it before a couple of years ago. Can I just confess… I didn’t mention that to the neurologist even when he asked about swallowing difficulties.

I do think about it, and figure I will do a quick project to record myself reading more of my poems.

I haven’t really wanted to talk about that to anyone because it feels like it would make it more real and it makes me much too afraid.

They have programs where you record yourself saying like 1500 common words and phrases and then a speech synthesizer thingie digitizes it and can construct what you want to say from that. The software to do this has different moods so you can inflect things to be angry or happy or whatever.

Remind me to record some key phrases like “Shut the fuck up” and “OH GOD! HARDER!”

Hahaha!

On the other hand I am not convinced it’s not all in my head and I don’t mean in the “upper motor neurons in brainstem” way of being all in my head.

You know the feeling of when your throat gets tight because you are super emotional? Like that.

Pilot and I had a nice talk yesterday and she filled me in on the acromegaly stuff which went along with the tumor. I didn’t realize that bit of it. She’s having a rough time over there, which I knew but didn’t really grasp. It’s funny to think of us in our next door houses, struggling. And I want to offer more solidarity in some way.

Meanwhile, I continue being absurdly happy. I get frustrated and scared and especially tired of being in bed. Not that I don’t love to be in bed. It’s just that when I have impulses to do something else, but can’t muster up the stamina, and bed is warm, and cold hurts like helll.

Rook’s parents are coming on Thursday!

I need to make a bunch more appointments and deal with medical things and faxing and insurance! And get food for xmas dinner, order a turkey or whatever! I feel like baking bread and cleaning the house! Instead I laid in bed all evening and watched “Hail the Conquering Hero” with Rook.

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Nightmares of my dead clone bodies, and my friends

I had such nightmares!

In one, I was trying to save Moomin from drowning. We were in the ocean. Moomin had some kind of floating pillow, and Rook was encouraging him to kick, but he was going under and breathing water and couldn’t. I was screaming at Rook to help push Moomin up onto a sort of raft. But he kept saying “He can do it!” and I had to do it myself and couldn’t lift him high enough, over and over I kept trying through the huge choppy waves. My legs weren’t kicking very well. I couldn’t get up on to the raft to pull him up after me, so I was trying to use the waves and then push him up and over the edge. Moomin was still struggling a little to help get onto the raft, but then he’d choke again and go limp. I was terrified. Usually in dreams I have a lot of “lucid dreaming” power and can rewind and “fix” things and make it come out how I please. But here I couldn’t. I don’t know if anything finally happened. I think I woke up.

In another nightmare I kept dying over and over, and coming back in clone bodies. I was an assassin with a bunch of fellow assassins and there was some confusion so I’d come into a room with my message for them, but they’d kill me before I could explain. I kept coming into the room in new creative superhero-assassin ways, and as a result, just died all different ways. Sometimes it took a few minutes, and I’d be lying there thinking “Oh hell, not again, get it over with” but the actual experience of dying was never very comfortable. Waking up in the new body was disorienting. It all felt so futile. I felt sorry for the poor clone bodies.

In another, just now, I was in a sort of conference that had a dealer room that was so huge it was like Walmart. A guy was explaining a sort of computer phone device to some other dude who had problems understanding and I was chirping up to help and out of curiosity. Then the customer-guy was somewhere else in the store and asked me where the original aisle was. I took him back and he was saying it was amazing that I remembered and was nice of me to help him, then suddenly we ran into like everyone I know, and the guy whipped out some sort of amazing high tech wheelchair out of nowhere, and was buzzing around in it, and converted it into a sort of bike.

My friends and co-workers were all standing around (we were magically in a giant lobby or living room space) talking about me scornfully. “She doesn’t try… she would never be able to go in races like YOU can” one of my friends said offhandedly to the bike-wheelchair guy. “If she would just work harder at it, well, but no she won’t. She’s like, a 1400-yard sort of girl.” I was trying to get people to listen to me. But no one would. They just sighed impatiently and listed off all the things I do wrong. I eat the wrong things, I don’t exercise like I could. I was crying finally and screaming at people to listen to me. “For one thing, 1400 yards is a LONG WAY! What are you talking about!” and saying that if I went for miles in a wheelchair I would just mess up my shoulders and wrists anyway, and my hands would hurt too, especially in the cold. But they turned away and said “You’re just making excuses… like you ALWAYS do.”

One guy was bitching about how I eat and I was like “Dude what are you talking about, you barely know me, and besides, think about yourself, why don’t you go worry about maintaining your OWN body?” And then other people up came up to yell at me for saying that to him because he was so emotionally fragile… “do you know what you just DID to him?” Others explained I was being a huge downer and it was not what they wanted at their conferences and I would not be welcome again and also I had emotionally damaged all the children around me by crying and yelling.

Finally I got one guy from my work to listen to me explain that it would not matter how much I exercised or what I did; it doesn’t change my motor neurons from decaying, it isn’t under my control. And he went “Oh. I didn’t know that.” But he was only one person, and the rest of the world just swirled around me not caring at all.

What a horrible night! And after such a nice day, too. Was it Pretty Lady who suggested that nightmares come sometimes when you feel safe enough to deal with your unconscious fears?

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