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Unpacking and whatnot...

No images yet, I haven't done my daily art yet today. Right now I am resting from stage two of doing my laundry -- I got it into the dryer and got their stuff out of the dryer. That took bending over too long and my hip's gone out. Some things are still that hard, even in Arkansas.

I think if it were up to me I'd probably want to have a platform built under the laundry machines so that I wouldn't have to bend over at all to use them. Or a cabinet so that linens or something could get stored under them and the space isn't wasted. But I could have just handed the basket off to Karl and asked him to do my laundry. I didn't, and that's one more point for my independence.

Another big one is that yesterday I took a shower. Amazing what the climate difference can do. Kitten put the cat litter bag too close to the shower, so I needed Karl's help to move it under the sink instead. Once it was out of the way, I got in and found out that in some ways showers are easier. Provided I can stay on my feet long enough to have one, there's no bending or sit-ups to rinse hair and wash hair.

I'm going to get Kitten to cut my hair into a crew-cut again. Not only does it look good -- style has swung so many times between short hair and long that long hair doesn't mean what it used to -- but it takes a lot less care. A quick wash once-over in the shower and that cuts the amount of time I have to stay on my feet in the shower. That would mean being able to shower more often, like when I get sweaty on a hot afternoon.

Even as it is, I'm reveling in being able to bathe more often here in Arkansas and get clean. I missed that. I didn't slob off because I liked it, I slobbed off on disability. Regaining one of those basic human dignity things is wonderful. Especially when the shower is actually in the bathroom in my room and I can take one exactly when I most feel up to it. Not a problem if the kids are down for their nap or just went to bed.

In the Lawrence house I could only go upstairs for a bath when the kids were awake or more than an hour after they went to bed. This was because anything unusual like my going upstairs stirs them up and makes it harder for them to sleep. Sensible and I didn't have too much problems with it at the time. But the privacy of my own bathroom means that I could shower right during their naptime without disturbing them.

That might happen to be exactly the time that I most feel up to it too. No stairs to get at it, less time on my feet. In a way I can look at it as a good thing.

With my bad hip and back, I take short showers. Short showers waste less water than long ones so it's all good, this helps the environment. Not that we live in an arid climate where water's critical, but it does take electricity to heat it even here.

I do still have limits. I got the laundry started yesterday but didn't feel up to getting it out of the washer, so it sat in there all night. I still could not count on being able to function well enough every day to get a job. For that I would need to go out of the house daily, not once a week. But getting up to once a week is a miracle compared to "once or twice a year." Being able to shower afterward when I'm dusty and sweaty is a joy.

My cat has been getting snuggly again. He's so sweet sometimes. He comes up to lay in my lap, he's become a serious lap cat at times. Once he's settled down I don't want to disturb him and it always seems like he's barely snuggled down before I need to get up for something. If I look at the clock though, I've been typing over his back for four or five hours before I need to get up for more coffee or bathroom or whatever.

I love it when he'll bump my elbow with his head or press his forehead into my hand or armpit. My heart just swells when he does that. My cat is so loving and gentle. His timing is perfect too, he'll come sit on my bad hip when I'm sick and purr. That helps a lot. If I get depressed, he'll head bang and purr and lean and remind me that yes, I am loved by a cat.

Sascha and I hadn't had our Walking with Dinosaurs thing for a couple of weeks after moving in, because things were unsettled and they weren't used to the new arrangement. Now she comes in almost every morning and asks to watch dinosaurs -- which is shorthand for "watch a nature video." She might want lions & Hyenas, Eternal Enemies or anything else but she will in general ask to watch dinosaurs.

Now she always brings in the two dinosaur toys Kitten gave her for her birthday and spends the whole program demonstrating how the dinosaurs fight, mate, have babies, get sick, lay down, get up again and fight. She's very creative about making up stories for them. If I fold her an Origami crane, then the bird gets into the story too. Dinosaurs chase it usually.

This morning I played with her and turned the crane into a Tick-Bird eating bugs off both of her dinosaurs. She liked that game even more. Bugs thrill her, so having the crane eat imaginary bugs got her all excited. She gets so emotional that I'm stunned. Her moods change on the instant and she passionately responds to any story, whether it's hers with the dinosaur toys or what's on the screen or anything.

She also loves the idea of family, of Mommy and Daddy and Babies. Occasionally a Grandpa gets in there too when she wants dinos drawn or painted, or any other creature. But always a mommy and baby, sometimes lots of babies, sometimes Daddy too. We are still trying to explain to her that the cats are spayed and neutered respectively and so are not going to mate and have kittens.

Are all little kids that emotional at five? Or is this Sascha's unique, passionate personality? I don't know much about children, least of all healthy children. She's sweet and loving and helpful. She's healthy and brimming with energy, the only thing I can compare either of them to are the kittens I've raised.

They are like that. They bang off the walls running around and playing hard, passionately responding to everything. Then they get tired fast and drop off to short naps to bounce around some more.

Today's "Writer's Block" threw me for a loop. It would've been hard enough if I'd been well treated because there would've been surgeries and hospital stays, plus most of the things children enjoy would've been off limits for health reasons. It would've helped though if that wasn't being presented as my fault for being bad because I had symptoms -- if being sick was treated as something unavoidable, nasty and nobody's fault.

It got me thinking. The effects of that childhood have lasted forty years now. More, some of them. Things that happened in kindergarten still hurt and leave deep scars. If I were as emotional as Gabriel or Sascha, I would have done nothing but scream all my life. Too many times I just feel numb, still. Only when I live in the moment, in the here and now, does life get unbelievably better.

For all the hard things I faced in later life, I can still say nothing was ever as bad as being a child. The worst of the bad things that came as an adult, like the shelter years and certain bad households, were a reprise of childhood. A lot of people have no concept of how to treat a disabled adult. Their only acculturated response to dependence is the "parent with child" model. If that's warped, the warping can be lifelong.

It's not just me though. It's so many other people I know that I really wonder ... really wonder if along with Boys Don't Cry and the rest of the usual male programming, there's also a deep level of assumptions about the importance of birth family. If it'd be easier to recover from those scars in other cultures where it's easier for children to move around and migrate out of bad situations.

Do people ever get over it? Who would I be if I could look back on childhood as a time when I was loved, happy and secure? If I had memories of time to play and not being shut down whenever I did anything I enjoyed. I wish I knew what that felt like.

I can see some of the annoying things I did as a little kid in their behavior. The way they both want attention and want to be played with. Sascha loved it when I picked up the crane and played tick-bird on her dinosaurs. I think I just created a memory with that one -- especially if it's repeated. It'll sink in and she'll know when she's thirty that it's okay to be playful and okay to be creative and what she does is worth attention.

But she also calms down if someone tells her "Calm down." Especially if you say "Quiet voice, calm down" in a quiet calm voice she will calm down pretty fast. Her tantrums aren't the same thing as my screams for help were, because if she's throwing them over something petty or unreasonable she doesn't latch onto that petty thing and throw everything into it. What I had to cry about as a kid wasn't petty.

It bugs me though that any question about the past just hurts, turns on the pain again. I get stressed about anything that happened before 2006. Anything about the past brings up trauma -- and it was all unending trauma, crisis after crisis. I didn't seek those crises. They were just there in the world because I could not keep up.

A lot of people it is psychological.

I never did get to go to Disneyland. There came a point when I didn't want to, when I began to suspect it wasn't all it was cracked up to be. That Disneyland was about what other kids wanted and about standing in line after line to get on rides. As opposed to less famous amusement parks and traveling carnivals that also had rides but far shorter lines and none of the cartoon characters I disliked. I really didn't like most of the Disney characters!

I think some of it was that Disney presented a happy-happy world where no one like me ever could exist and no child would ever be treated the way I was. Disney was unbelievable. Disney lost suspension of disbelief. Kids owuld get away with things I'd never been allowed, get treated well and forgiven if they committed crimes I'd never have dared. They didn't ever have to fear a biological parent, the bad guys were never related.

Disney never touched on the story of what happens to the kid who happens to be born to the bad guys. The few times it came up, the kids were just smaller versions of the bad guys doing the same thing. They kept life too simple in Disney and too normative. Kids were also too naive in those movies.

So there came a point of too many movies where Disneyland was not something to hope for every year and then get turned down. I quit even wanting it. But some things I wanted did stick -- having art supplies and never having to run out of them, getting to replace them when they're used up. Getting books. I still get thrills when I get a new book.

Right now I have Terry Pratchett's Carpe Jugulum on my table and I think it is the perfect antidote to all these flashbacks. On Diskworld there is no question that sometimes bad things happen to good people or even that sometimes good people get born to the bad guys and make their own way in the world. I love Pratchett for that. His happy funny world isn't sanitized at all. It's dark and real in ways my life was real -- and yet it's still a funny old world and he can still give me a laugh half a dozen times a page just with the way he describes it.

So in another sense anything I miss about childhood I go ahead and get it, because I can and nobody's stopping me any more.

That turned dark toward the end and wandered into Flashback City dealing with the flare the last Writer's Block question gave me. Any question about the past, especially childhood, is going to hurt to answer it.

That's true for a lot of people and not just me.

I wonder what life is like for the people who can answer that with something happy? I wonder how it feels to get homesick or nostalgic? What it's like for people who do want to hear from their classmates in schools they went to and had friends when they were children.

It's so foreign. I have no idea what that'd be like.

Oh, one happy thing! I unpacked my good lamp today. Karl brought it upstairs and I can read my new Pratchett book without eyestrain. The overhead light in my room is very dim, only a 40w incandescent bulb, and the other lamp has a brighter bulb but a yellowish thick shade so it doesn't give much light compared to my Daylight lamp. That one is awesome.

The way I have it set up now is even better, because the magnifier is in reach again and I can use it when I'm painting ACEOs or trying to read when my eyes are tired. Life gets a little better every day with this unpacking and I hope we can get it all by the end of the month.

I need to rest a bit longer and then get my laundry in here -- then maybe sit still and do some daily art to get my mind off the pain. Today I have definitely been feeling the effects of all my bounding around doing things I couldn't.
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( 18 comments — Leave a comment )
Jun. 23rd, 2009 08:40 pm (UTC)
have you ever tried or thought about a shower seat? they're not just good for sitting, but also... well, my problem is my lower back, and putting one knee or one foot on a seat takes pressure off my lower back in a way I don't quite understand. anyway, they're less of a commitment than installing grab bars, so it might be worth a try.
i have a great book called The Back Pain book
that has a lot of great suggestions for alternate ways of doing everyday activities that are less stressful on one's back. I found that just one or two of the ideas made it well worth the price, for my comfort (or decreased discomfort).
Good luck - my thoughts are with you.
Jun. 23rd, 2009 11:16 pm (UTC)
Kitten was considering getting me a shower seat. I think considering the problems I have getting up and down, the shower seat might be more trouble than it's worth. I managed to shower without one, though I have to say a grab bar for keeping my balance would help I managed without it.

Standing up and sitting down takes more energy than just staying on my feet, unless I stay on my feet too long. It's my back and my hip and one leg being shorter than the other, a pretty complex situation. I tried a shower chair once in someone else's house where they had one and used a hand shower thing on a lead. I had to stand up to get the water started, then sit down, then do a lot of arm movements to move the spray around. Then stand up again to do my rear and the back of my legs as opposed to not having to hold up the spray.

If I have the energy to do it at all a regular shower is easier. I used the soap tray as a handhold while standing on one leg.

What I found was that with the hip and leg problems, a lot of things that work for other people with back pain actually make mine worse. Like sleeping on a hard surface -- I can't do it and will be nearly paralyzed afterward in agony if I do. I had surgery and laying on the hard table threw my hip for six months.

Many people with scoliosis could not sleep on a soft bed without a whole lot of pain. I do better the softer and squashier the bed is, best of all on a waterbed. Many people with scoliosis can't use cushioned chairs and have to sit on the hard flat sort of chair. Using one of those is worse than standing though it throws my hip in a different way than standing. I need a soft chair or canvas chair with give to it and arms to lean against.

Most people with back trouble benefit from exercise.

I will ruin my back with even the gentlest exercise and wind up in agony for months. I've tried it in so many variations including those prescribed by chiropractors that I won't even consider it now unless I had surgery of some kind -- and I don't want surgery. I don't want the risk of winding up even more crippled from some surgeon trying to rearrange my spine to be more like a normal person's.

I might look into that book but don't have a lot of hope for it, as a lot of back problems are caused by muscle spasms or spine misalignment rather than actual bones shaped wrong. There are so many different things that can go wrong with a back.

I've found out what I can do or not mostly by trying it, and think of things that work as I try them. I'm always trying to do something a little easier and shave off some of the body energy needed because then I can do it more often.
Jun. 24th, 2009 12:11 am (UTC)
i figured you'd probably tried all that stuff before, but I also thought it was at least worth a mention. I'm so sorry to hear that the "usual" techniques bring you so much pain :-(

the thing about backs is that one could make the argument that even "normal" backs are not really shaped right, or in the right alignment. Evolution being what it is, the human back is only "good enough," but not truly GOOD. The "normal" arrangement of bones and muscles is still a terrible design, hence the ubiquity of low back troubles... which is all not to say that I'm trying to compare my woes to yours or minimize your situation. Just... well, you sometimes talk about feeling freakish in some way. And I wanted to suggest that maybe you're simply an example of the extreme of already poor engineering...?

in sympathy,
Jun. 24th, 2009 03:26 pm (UTC)
That's very true about normal backs, it's one of the reasons why I keep getting steered wrong into types of exercises and activities that are good for most people. The one piece of general advice that does apply is "If it hurts, STOP."

People who ignore back pain are asking for injury.

As for freakish -- no, it's not just an example of the usual poor engineering. It's an actual, visible distortion.

I've been a freak for a long time and in some ways "freak" is a positive self definition -- think back to the sixties. There were the Freaks (more political and intellectual) and the Heads (more party-oriented stoners). Both were long haired hippie types. I was always a very intellectual Freak and questioned everything. So freakish is not 100% embarrassment at all.

I'm not normal and never wanted to be.

But I'm also disabled and never wanted to be, but I'm stuck with that and it's both visible and limiting. Pretending I wasn't caused more harm than anything else.
Jun. 23rd, 2009 11:26 pm (UTC)
I checked the index... there's nothing in it that I haven't tried with disastrous to ineffective results. The index had no mention of leg length disparity other than a leg lengthening exercise that might help with someone who had a mild version of the problem -- exercise is not going to give me 3cm of bone. Or make the bones on the right side of my body grow to match the bones on the left.

This is probably why most of the things that other people with back problems find helpful are so ruinous. I'm not shaped symmetrically. Even my face and jaw are smaller on the right side, it causes problems in everything from chewing to standing. All my weight goes down onto one side when I sit, and that kills chairs.

What's nasty is that a lot of the alternatives that help others cause more harm when I do them that way. The only way I've ever found anything like runarounds is by personal experiment -- like taking that shower yesterday. I know what it takes now and will do it with what I have. Not having to bend over or sit down and then stand up or reach far for anything made it easier than I thought -- now that I'm in lovely Arkansas where the weather doesn't set my joints off to the point where I can't even stand up.

Once I get that short-short haircut it will seriously help too, because I won't have to do anything about hair grooming and that'll cut the time needed showering in half.
Jun. 24th, 2009 07:04 am (UTC)
Hmmm. Another thing to look into might be some of those non-slip shower stickers to make it easier to stand without slipping. If that's a problem, that is.

I play with a neighbor 6 year old, and yes she has a lot of energy. :) Or at least did, before she went to kindergarten. Schooling has calmed her down a lot, and now she doesn't beg repeatedly to play, she'll take no for an answer.
Jun. 24th, 2009 03:28 pm (UTC)
That isn't usually a problem for me. There are a few of them already in the shower but the problem isn't that I can't stand on a slippery surface. I'm actually very good at that! I have to put so much work and attention into being upright at all that I've got a lifetime's habit of developing balance.

I get balance problems from other things, like ear infections and when I'm so bent over by the arthritis that all my weight is way forward. But not here. It's weird because when I have so many problems with other things everyone assumes I've got serious trouble walking on ice or anything slippery, when they're more likely to fall than I will.

Heh, maybe that'll happen with Sascha too. She's very very intense. She's in here again looking for another episode of "Dinosaurs" so we'll find out if they're the mammal kind or arthropods. lol
Jun. 24th, 2009 06:27 pm (UTC)
I'm sorry, I don't seem to be expressing myself well lately. I didn't mean to imply that you didn't have a disability, that it wasn't real or anything of the sort. I was waxing philosophic on human evolution, musing that back problems occur along a continuum. I'm sorry if I gave the impression that I wasn't taking your physical problems seriously. I was trying - however ham-handedly - to be friendly and sympathetic.
Jun. 25th, 2009 12:35 am (UTC)
Thanks. I sort of got where you were coming from, that you intended sympathy and commiseration.

I hope you do understand it isn't the same. Congenital deformity isn't something that I did wrong. It isn't something I could change and its limits are not negotiable. They never were.

I know the feeling behind it is "I've been there too." It's not the same though.

I have no idea what it would be like to not be a freak.

I have heard that idea that all human backs are that badly engineered by nature. Every time I did, it was inevitably followed by pressure to do something really stupid that would throw my back. In addition to the major inbuilt problems, I get "sports injuries" from attempting exercise or normal activities. The damage is real, it takes as long to heal up as it would if I was some strong abled guy overdoing it and lifting from his shoulders or something.

It's added new problems onto the ones I can't do a thing about every time I went for it. So I went automatically into "education mode" to try to get across that no, it's not the same thing and don't expect me to try things that haven't worked and caused harm the first thousand times I tried them.

I'd rather wrap my head around the idea that being a physical freak does not justify my beind shunned or treated badly than to pretend it's not real -- down that road lies disaster.
Jun. 25th, 2009 01:55 am (UTC)
I think we are still miscommunicating.

I did not mean to imply that my bad back and your congenital deformity are the same or even similar. I am NOT saying "I've been there, too." And by making my comments about the evolution of human backs I was not attempting to give you advice or tell you what to do, or anything. I was, as I said, simply musing. Evolutionary biology is sort of my "hobby," these days. I was just musing, and did not mean to imply any of the things it seems you think I was.

I wasn't trying to commiserate, for I can see that makes you think I'm trying to equate my problems with yours and in doing so, gloss over the pain you've suffered. I certainly wasn't "expecting" you to do anything. Nor did I mean to say you should pretend your disability isn't real. Again, I was just trying to reach out in a friendly way. I hardly ever comment in your journal and I felt like making a connection, however small. If my choice of words came across rude or dismissive or something else, I'm really very sorry. If my words led you to conclude that I think that your disability and pain are trivial; that I am trying convince you to do x, y or z; or that I have some quarrel with you... well, then I guess I can consider my attempts to communicate clearly a complete failure.
Jun. 25th, 2009 02:11 am (UTC)
Right. I'm sorry, I was venting because it hit a flashback trigger. I wasn't saying you are doing these things. I was sharing what happened for years and years that made that idea hurt. I know that's not what you intended and I'm sorry it came out like I was saying you meant that -- you don't. It's just that I went into a very deep strong reaction, it went really long, and I kept trimming it back.

Maybe I shouldn't have trimmed back the vent because a whole lot of it was about medics, doctors, chiropractors, people you've never met who did pull all of that on me and pressure me in that direction.

Sometimes there are flashbacks. You're not the person who did this to me.

Oddly enough evolutionary biology is a hobby to me.

I did understand what you were saying and distinguish you from what I'm reacting to. It's just hard sometimes dealing with that reaction. The person whose voice came to me wasn't anyone like you at all.

The words I heard were from my grandfather explaining it pompously -- a man who was never sick in his life and I think he honestly believed that he could "decide" never to be sick in his life and that his stubbornness protected him from all sickness and injury. When he did get injured and developed cancer, he died horribly -- he wasted for about a year completely lost and confused because his entire identity was destroyed by his being sick.

I got scared ... and I still once in a while get flashback reactions. I hate it that it happens. It drives me nuts as much as not being able to reach things or bend over to pick things up. I'm fine as long as I'm living in the now, but when memories come up sometimes it's more than I can take.

I'm definitely oriented as to which is which though and do understand what you're saying. You cared, you said it to show caring, it's not the same thing.

One of the big fears, one of the biggest is that while I was growing up there was this kid next door who was literally never allowed to talk to anyone and never let out of his house -- because he had epilepsy. Nothing worse. Nothing more debilitating than that. It was managed with medication, his symptoms were that about once a month he might space out and be gone for maybe a minute or two. Petit mal.

But his family wouldn't let him meet anyone or talk to anyone or leave the house. He was disabled and they hid his existence. I talked to him just once and tried to convince him that he could live around it, that once he was legal age he ought to go on and get a life, even if he couldn't drive there was a lot more to life than driving. He was never allowed to talk to me again.

They were being so nice to him by keeping him at home instead of institutionalizing him. They were being "kind" by it.

Scared the pants off me. That's what I'd have faced if I hadn't been in denial about the nature of my problems. My family were all with the parents except for the members who thought they were being too softhearted and should've locked him up away from decent normal people.

It's always harder on bad days, and today was a bad day. Sorry that I didn't make it clear that I was venting and not about you.
Jun. 25th, 2009 02:46 am (UTC)
i hope tomorrow is better!
Jun. 25th, 2009 03:03 am (UTC)
Thanks. I hope I can manage my daily sketch tonight.
Jun. 25th, 2009 02:15 am (UTC)
I also get it about evolutionary biology being a hobby. I seriously get into that, and my comments must have just set off an interesting side rumination that had nothing to do with my condition. It's a cool hobby. Have you read any of Stephen Jay Gould's books? I used to own several and I miss them, he was such a brilliant writer. Ever Since Darwin was great, but so was The Panda's Thumb.
Jun. 25th, 2009 10:32 am (UTC)
I haven't read any Gould, although he is on my list for sure. I'm reading some Richard Dawkins and "Endless Forms Most Beautiful" by someone whose name I'm forgotten - it's about evo devo.

I've always loved science, and recently that passion's been reignited by the creationism v. evolution "debate." I even joined the National Center for Science Education, to support their efforts to defend the teaching of evolution in American classrooms. So... yeah, I'm pretty impassioned about it.

I kinda gathered, yesterday, that I had pushed a button. I'm glad you know that I didn't mean to. I'm so very sorry you've had so many people who should have been on your side, working against your best interests, harming you physically and emotionally. "That sucks" does not begin to cover it.

May today be a little better - more art, less pain.
Jun. 25th, 2009 04:03 pm (UTC)
Thanks. So far it's a bit easier, though I still haven't done any art yet I'm not quite as exhausted.

I got shocked the first time I ran into the creationist "debate." It seems crazy that people are still trying to prevent science from being taught in schools. One result is that Americans wind up dismally lacking in science by the time they get to college.

I had one amusing argument to toss whenever it came up that seems to stump the fundies -- if religious myths are considered as alternate theories, then freedom of religion dictates that all the different religious creation stories should be given the same weight. Which would slow down the science curriculum but insert comparative religion into the curriculum. That's the last thing they want.

I can remember arguing it in high school and being horrified that the teacher would even consider creationism, since the school wasn't a religious school. I was better prepared on evolution than he was just from general interest in it. He was terrified, I remember that. I think he was afraid of losing his job because this kid in his class gave too good a presentation of Darwin.
Jun. 25th, 2009 04:14 pm (UTC)
It's depressing to live in a country that supposed to be a leader in science and tech, to live in a country that theoretically has a separation of church and state, and to still be fighting this battle in 2009. UGH.
Jun. 25th, 2009 06:00 pm (UTC)
Yeah. I remember being shocked to find out that churches won in the Scopes trial but it should not be going on today. Have you run into the Great Spaghetti Monster website? Google that -- Great Spaghetti Monster is an alternative "intelligent design" site that's wonderful -- utterly hilarious. Think of Cthulhu with meatballs for eyes.

Here's the link. Church of the Flying Spaghetti Monsnter ... the best satire on the side of science. This is the letter to the Kansas Board of Education that kicked it all off: Letter to Kansas Board of Education. Enjoy!

Edited at 2009-06-25 06:01 pm (UTC)
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