30 November 2016

Day 4: Patience

It's Day 4, and it's just barely past noon, and I'm done my challenge for the day. And that's good, because my in-laws arrive tonight, so I'm probably out from here until Day 13. And what's the theme of the day? Patience. LOL. Too timely.

Here's my entry:

Patience! Other than my niece's name, this word doesn't mean much to me. What's patience? Waiting calmly and happily for something? Waiting without complaining? Hell if I know. It's easier to recognise it when it's lacking, I think.

This is my piano/keyboard. My 7 year old son is taking piano lessons, and I've always wanted to learn too, so I'm taking lessons with him (midlife crisis? Maybe.) And what I do know is that patience is something I don't have with it. I want to be good now. I want to be great now. I want to sit down and accompany the family on a Christmas singalong (ha! Like I'd *ever* get them to do that.) I want to be able to sit at it and reproduce the beautiful music I hear on the radio. And I can't. I mean, I have a good ear, so I can pluck it out on one finger, no matter what the song, but chords and rhythm tend to help. :) So I'm learning to be patient with myself in learning something new at 40somethingmumble.

I think patience and love go together hand in hand. Remember "Love is patient, love is kind" (1 Corinthians 13:4-8), right? I think patience is love. Being patient with a crying child is just loving that child. Being patient with myself as I learn how to play Bach or a random Christmas carol is loving myself. And God loves us perfectly. God is patient with us as we screw up over and over again. Patience isn't getting angry and yelling or throwing thing. Patience is remembering to love the person. And maybe sometimes it's just acceptance of things one cannot change - like the long line of cars ahead of me or the racist attitudes of that in-law who never shuts up.

All I know is that patience is a virtue because it's grounded in love.

29 November 2016

Day 3: Thankful

Like I said, bad blogger. Missed Day 2. Oh well, pick up and start over! Today's theme is thankful. Here was my post:

Thankful. I'm so thankful. Even on days when I'm railing against the injustices in the world. Even on days when I see the forest around me being cut down for more single family homes. Even when I hear about atrocity after atrocity. All I can say is "Thank you", because I have so much. So much I feel guilty about it. And by the standards of my community, I'm not wealthy. (Funny story: When one of my kids was having various issues, we had a lot of support staff come in from the province. They would bring us gift cards from the local grocery store because they thought we were poor. We also "won" the Christmas raffle that year. Suffice it to say, that all was donated to actual poor people. We just look poor because we don't really give a crap about having "nice things").
ANYWAY, I am super blessed with Enough. Enough is one of my favourite concepts. I never pray for abundance. I pray for enough. Enough food, enough clothing, enough money, a house that's good enough, etc. And so often I get even more.
I had a hard time narrowing this down to one picture. I was considering a picture of my kids, my husband, my home, my Mom, my Dad, my birth parents for giving me up, the beauty around me, my son's team of doctors ... The list goes on. Finally, I just went through my pictures until something spoke to me.

This is a picture I took at the Autism Treatment Center of America, near Sheffield, Massachusetts. I was lucky enough to go there three times, to learn how to train people to work with my kids. These three trips changed my life in so many ways, I can't even begin to tell you how transforming it was. At the ATCA and Option Institute (they're part of the same thing), I learned that happiness is my choice, and more importantly *how* to choose it. I learned to view Autism as a blessing in my life. Everything about my life changed for the better when I went there. Bears Kaufman (Barry Neil Kaufman, should you want to find his books) and his amazing wife Samahria developed the Son-Rise program and the Option Process, and for that and them, I will always be grateful. If you're considering who to donate to this Christmas, consider them. They're a registered charity, and they do a lot of good work helping people come to their programs.

Day 2: Longing ... to be better at challenges

So evidently I suck at x-a-day challenges. I missed Day 2. It was "longing". I had nothing. I long for the end of greed. Not sure how to photograph that.

Anyway, stay tuned. I have an idea for today's theme!

27 November 2016

Advent Photo-a-Day Challenge. Day 1: Hope

Advent is here! I love Advent almost more than I love Christmas. On a Facebook page I help moderate, we're doing the Advent Photo-a-Day. Today's theme is Hope.

Hope. It's my favourite topic to blog about. There is no such thing as false hope. There is only hope. You can hope for the impossible and work to make it possible. And if you don't get there, you still had hope. Without hope, there is no motivation for anything.

This is my sons' playroom. This is where the therapy happens. This is where magic happens. My boys are autistic. My elder boy profoundly so. In this room, they have almost total control of their environment. The therapist plays with them where they're at, and pushes them to succeed. My littlest has responded so well that doctors are stunned. They throw around words like "miracle" and "amazing". My elder boy, he's not responding as well, but he has complex medical issues too. Have we given up? Hell no. While there is life, there is hope.

14 November 2016

Safety pins

Y'all have heard about the safety pin initiative, right? White people who consider themselves allies are putting safety pins on their coats as a sign that they're allies. Or something. Depends who you talk to. And the backlash is epic. From snark like "If only we'd had safety pins in 1933" to legitimate serious questions about what they mean? Does a pin mean that person will stand up and help? Or is it just a little feel-good way of saying #NotAllWhitePeople without doing any work? Good question. And I think it probably varies from person to person.

For me, I'm going to wear one. Why? Because if someone who is in a marginalized group needs help on the street, and they're scared that the response might be "Fuck off, $Slur", a little safety pin might be enough to allow them to ask for help. From something as little as "Can you help me get that off the shelf, Tall Human?" to "Help! I'm being harassed by bigots". And while the pin is no guarantee whatsoever, it's a tiny thing.

That's the thing. I know the pin isn't the answer. I know the pin doesn't really solve a single thing. I know the pin isn't something that guarantees a damn thing. But I also know that I have basically no power as a single individual. I can't bring down fascism myself. I can't end racism. I can't make my bigot brother vote for a decent human. I can't make my mother stop being afraid of minorities. I. Cannot. Do. This. I can keep talking to white people and learning from Indigenous people (the most marginalized group in Canada) and other minorities. And, I can offer a tiny sliver of hope that I am not going to hurt you if you talk to me, a sliver of hope that I can be trusted to help. And hell yes, trust is earned, not due because of a pin. But I also know if I need help, a wee clue about who might be safer than the next guy is a good thing. Mom always told me when I was little that if we got separated, I should look for a woman with children. It wasn't a guarantee that she'd be helpful or useful or safe, but it was definitely safer than a random man.

I see lots of angry people demanding we progressive white people do more. I'm not sure what it is we can do. Because the bigots don't listen to us either. We're losing friends, family, and loved ones to the hatred. We're not the victims, I know, and I'm not complaining. I'm saying that I have lost family, my friends have lost family, my family has lost friends. Because we are standing up for you. We are saying that bigotry isn't okay. And they don't care. We're writing to our politicians. We're donating money. We're educating our kids. But we're outnumbered. Vastly.

So no, safety pins wouldn't have helped in 1933. And they won't help much now either. But a question for the angry progressive people who are mocking the idea of a visible symbol of support, do tell, what should progressive Germans have done in 1933? And what should progressive Americans do now? And for the Canadians like me who are worried we're next in the fall to global fascism, what do we do? Because "Don't normalize it" isn't helping any more than pins are. We need concrete ideas. Plans. Roadmaps. Because we are fucking trying, and it isn't working.

And yes, I know this sounds like "me me me". I can't help that. The only experience I have is my own. It's simply this: I want to help. I don't know how. I'll keep talking. I'll keep listening. I'll keep writing. I'll keep donating. I don't know how much it'll help, because so far no good. But if I can be "the Mom with the kids" that someone might approach simply because I can use a safety pin, I'll do that too.

30 October 2016

Holy Halloween!

Last night, Tony and I packed up the kids into Mario and Luigi costumes (and me in Clara Irwin costume that I had to trial before FanExpo in a couple weeks) and went to the big Halloween party at the Pentecostal church in Colwood. This is a huge event for our area. >200 kids show up to get candy, see a "Mad Science" show, play carnival games, get pics taken, jump in a bouncy castle, and do crafts. It's a really big, really fun event.

Until we had to leave, that is. And why? Why did we have to leave? In the middle of the Mad Science show, which had zero evidence of any actual science in it while I was there, it became a Sunday school lesson. The stupid female assistant (of course) with the fake French accent (never did find out the point of that) kept screwing up the "experiment" and then it became a lesson about sin. He started asking who there was perfect. A few kids put up their hands. The man started laughing at them. Said he'd like to take them home because the kids at his house sure aren't perfect (cue laughter from parents). The one kid said, "My Mom says I'm perfect." He told her only God is perfect. And the Bible says... Then he literally used the word sin. And I said to my husband, "We're gone. NOW."


My otherwise delightful neighbours' pumpkins a couple of years ago.

So we got up and left. I let Pop go for a jump on the bouncy castle and play a few games first, and Tony and Crackle went back to the van (which honestly, was probably good timing for Crackle - he was handling the insanity well, but it's best to stop while he's still having fun.)

So it was fun. Except for shoehorning their shitty theology into a public party for kids. So now my kid wants to know if God is mad at him for every mistake he makes. Because the stupid woman didn't really hurt anyone. She just couldn't do the work properly. But that's what the man used to say no one is perfect, and God keeps track of our sins. OMG. What was the last thing I thought I'd be talking about on the way home? The nature of sin.

Absolutely disgusting. I complained about it on Facebook, and my clergy friend said, "Ew, gross!" So I'm comfortable that I'm not overreacting.

This is one of the reasons that people loathe Christians. We must be better than this. We don't have to cram Jesus into all the secular events. I mean, we can think about his message of love while planning, so that we can make it accessible for all. We can remember to have treats that are non-food for the allergy kids. We can seek justice and make sure that the treats we're handing out aren't made by child slaves. We can be good Christians, spreading love and kindness. I wouldn't have blinked if there'd been a little announcement about their worship times. Or if they'd popped a little "Welcome to our church!" note in with the first treat.

Still pining for a good church. :(

25 September 2016

Epic Western Canada Adventure

Luna, you're tired. You're busy. You're overwhelmed. Why not put the kids in the van and drive 2000km? Don't forget, you'll need to pack pretty much all of their food, since they're too allergic to everything to even consider a restaurant. Then, when you get there, you can stay in an RV in your in-laws' yard for a few nights (with no data or wifi) before going to visit your Mom, who lives with the brother you loathe. Then, you can drive back. And I do mean you can drive back, because your husband is phobic of the mountains that you have no way to avoid. What do you say?

Great plan! Let's do that!

And we did. And it didn't totally suck! This is my favourite picture of the whole trip. That's not a smudge on my lens. It's low lying cloud. Somewhere near Cranbrook? I forget.

Wednesday, we drove to Osoyoos. That couldn't be a more beautiful place if it tried. The hotel sure could though! OMG. Dead fruit flies in the bed (got sucked through the air conditioner), dirty everything, just gross. Crackle cried when we got there. He wanted to keep driving. We'd been driving (or on the ferry) for about 8 hours. Thanked God and all things holy that I'd brought a bottle of brandy with me.

Osoyoos, from the east

Thursday - Osoyoos to Lethbridge, 750km. What a beautiful day and drive. I kept getting overwhelmed by how beautiful everything was. This may or may not have been related to the fact that I apparently cannot schedule things around my cycle.

Near Mt Broadwood

Friday - Lethbridge to Grandma's House in southeastern Saskatchewan. 805km. Can't give the exact location, because the population is literally 25ish. 25. People. I don't think it's ever had more than 50. Lots of wind turbines on the way through. 

Wind turbines near Medicine Hat
We stayed at Grandma's for 3 nights. They bought a fancy RV and put it in their yard as a guest house. It worked well enough! There was heat, water, a fridge, toilet (of sorts) and the bed didn't hurt my back. Win!

Comrades, it was good. My inlaws were nice. They were kind. They were friendly. They only tried to pick fights a tiny bit, and I didn't take the bait. It was magical. Some seriously unhappy people in the family though. :( I think the downturn in oil is really hard on them.

Harvest moon from the road in front of Grandma and Grandpa's house
On Monday, we headed back into Regina for 3 more nights. This time in a nice hotel - YAY! Comfort Inn and Suites on the northwest end of town. Can't beat that place! I didn't get any nice pictures of Regina. That doesn't say anything about Regina, just my photography skills. Got lots of nice ones of my Mom and the kids there, but I can't share them here. Sorry. Here's some beautiful prairie for you though.

My brother was a complete shithead. I had hopes things would go better. He knows about the kids allergies; it was a huge fight last time. This time? He brought home pizza. I flipped my shit. I mean, I totally fucking lost it. Pizza. This could quite literally kill Crackle. Did he give a shit? Nope.

It was really wet in some places!
On Thursday, we started back. We went through Kindersley where the Sask Energy truck in front of us ran two consecutive red lights. Hilarious. The rain was bad when we got there. Scary driving, that. Fortunately, Tony does most of the prairie driving. Hehe.

Friday was my favourite day. We drove from Kindersley's bizarre hotel (seriously weird place) to Revelstoke, via Drumheller. I love Drumheller. The geography, the history, the geology... beautiful place. 
Mother Earth has some great cleavage!
But even better than the natural beauty? The museum. The Royal Tyrrell Museum of Paleontology. Ho. Lee. Shit. I could have spent a week there. Easily. Alas, we wanted to get to Revelstoke before dark (which did not happen) so we left after an hour and a half.
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Erhmagherd. Ferrsils!
Tony carrying Crackle in. Crackle can handle most things if he gets to ride on Daddy's back.

You know how something has to really get seriously fucked on any trip? Well, that happened near Canmore. We hit some really strong wind, and it tore the lid off the cargo carrier while I was driving about 100km/hr. Fortunately, I was in the left lane, and it smashed behind me onto the highway and then into the ditch between the lanes. I slammed on the brakes, pulled into the middle shoulder of the #1 highway, jumped out, ran half a click back, and got our shit and the lid, which was smashed beyond repair (the lock was still engaged, and the hinges were fine too!), so we filled the van completely full, left the lid there (sorry!) Then I got moving again. It took at least an hour for my heart to return to normal. Icing on this shitcake? Tony had borrowed the carrier. From his boss.

At the stop 1/2 hour before the carrier incident.

HOME! Revelstoke to Home. This has to be uneventful, right? Oh no. 1 hour or so out of Revelstoke, Crackle started vomiting. Pureed pumpkin puke. My favourite! Tony got in the back with him, relocating some crap up to the front seat, and I drove. All the way to the ferry. I have no pictures of that part of the drive, because Tony is phobic. Stop where there's a view? Oh hell no. Poor man. He's a wee bit embarrassed of it too, which I think is ridiculous, considering I'm too chicken to get my teeth cleaned. 

So we're done. We're home. We're safe. Tired.

Asked each of the boys: What was the best part of the trip? What was the worst?
Pop: The best was building Iron Man! (Nanna bought him an Iron Man Lego set). The worst was leaving Grandma's. 
Crackle: (the best) DRIVE (the worst) NO DRIVE.

09 September 2016

We don't need no Education

Education in BC is dismal. No blame on (most) teachers for doing the best they can with limited resources. All the blame goes on Christy Clark for this one. As Education Minister under the drunk driving Gordon Campbell, she removed the right of the teachers to bargain for class sizes and student support in contract negotiations. That was 2002, when Snap was in Grade 1. Throughout Snap's time in the public schools, she was undersupported. We pulled her in Grade 1 when the teachers were doing a work to rule protest (I understood their point, but my daughter would not be their pawn). Put her back in near the end of Grade 3 because it was clear she needed testing, support, and the kind of special education I wasn't equipped to do then (I was very, very sick then.) She was untested until Grade 6. Then she got an LD (learning disability) designation. She tested extremely low on executive functions. This designation meant she could have an IED, an IED that was largely ignored. What it did not mean was extra funding. There is NO money for LD designations. Zero dollars. She was allowed extra time for tests, which she could take in a quiet room. She was allowed to type notes in class and take pictures of the board. That's it. In high school, we had the greatest Special Ed teacher ever on board, and she was finally tested for autism (mostly because Crackle was, and I insisted to everyone and anyone that the description fit Snap better. And because I kinda got in the ped's face and threatened malpractice. We don't see her anymore.) Once the autism dx was in, the money flowed. To the school. Our family got $6000/yr for support for her. Her school got $18,500. Do you know how much of that was spent on her? None. Not a cent of it. They offered "social skills" classes that were designed for people way more impaired than she was, and let her out of PhysEd. The special ed teacher, the aforementioned beacon of awesomesauce, was already part of the team before the diagnosis. That woman fought so hard for support for Snap. She got her into classes with teachers she knew wouldn't be dicks about it, and got her out of one class that was really bad. That teacher, omg, that teacher. Anyway, that's not the point.

The point is that the schools are so terribly underfunded that kids share textbooks, are in huge classes, don't get the supports they need, and graduate unprepared for life. And it falls squarely on Clark.

When Crackle was Kindergarten age, I considered school for him. I talked to the two school districts closest to me. One of them told me, illegally, that he would be poorly supported and in danger in their schools. She told me to homeschool him. The other told me that he would be fully supported - with an assistant he'd share with 4 other kids like him. LOL. Crackle is on his best days, a 1:1 kind of guy. The school he was going to go to is on a busy road, with a creek running next to it. He's drawn to water. He's sneaky as fuck. And I'm supposed to trust this? Oh, and when they interviewed me, they asked "How long can he be left unattended?" I laughed and said, "He can't." They rolled their eyes. Not shitting you. They rolled their eyes. Then asked in a slower, more condescending way, "No, how long can you leave him if you give him something to play with? Don't you pee?" I said, "Yes, I do pee. With the door open. And the front door alarmed." Oh. 10 minutes later, they asked his assistant, "So, how long can he be left unattended?" She said, "About 4 seconds. After that, he'll bolt." Again, with the peeing question. And she said, "Yes, I bring him in with me." After all that, they offered 1/4 time 1:1, with no support at lunch. He has food allergies and no impulse control. I think I preferred the illegal advice from the woman who made no effort to hide her distaste for children. She's the same awful human who hung up on our social worker and tried to impede Snap from getting help from Community Living.

BC kids are getting screwed. Huge classes with huge numbers of kids with IEPs in them, but no support staff. How are teachers supposed to accommodate the IEPs without the resources to do it? They can't. It's impossible.

Here's the deal: If a child has an autism diagnosis (not easy to get in this province, btw! But that's another post) the school they attend gets $18,500 to provide specialized education. However, that money is specifically NOT earmarked for that child. The school can decide what supports the child needs or doesn't need, and offer what they see fit. Now, of course, they also have dozens of kids with LD designations getting no money, so the money is pooled to help them a bit too (with small tutoring groups, for example). Kids with more severe disabilities need more money and more help - so some of the money goes there. And of course, the school is seriously underfunded for supplies and equipment, so if any of that is going to the special ed program, guess where the money is coming from? $18,500. Seems like a lot, right? Any kid who needs 1:1 support uses the whole thing, just paying the SEA. Equipment seems to come from another pool somewhere - I never did figure that out. It was always such a hassle, I bought the equipment myself (like Snap's Alphasmart) so that we could get it within the millennium. Special Ed teachers are also paid by the funding pool. So at the end of the day, there's pretty much no money left. It's painful.

Oh, and here's a new tidbit of fuckery! As of this year, in order to keep getting funding for each child with a disability designation, the school has to prove that the child still needs the support they were getting the year before. You know how amputees had to prove to the government that their legs didn't magically grow back? Autistic kids have to prove that their autism didn't magically go away too. Only now, we not only have to do that to the feds to keep our tax breaks (yet another post idea), we also have to prove it to the Ministry of Education to keep the funding flowing to the school. I'm not sure if that's true in the public school, or how they handle it if it is, but in Crackle and Pop's school, the teacher asks me a series of questions about what the kids can do and can't do, and then fills in another chunk of paperwork for them.

Is there any wonder that parents like me are fed up? We're heading for private schools, en masse. My kids are enrolled in a Distributed Learning school (what we used to call Correspondence School, except now it's all online.) I provide the school with a weekly update of what they're learning, and they provide me with access to about $11,000 of the $18,500 the school gets for them. Money I spend on getting them therapies and other supports. Things they'd have no access to in the public system. No access. Plus, I still get the $6000 in autism funding (and God Bless the people who still accept it! The funding unit pays so slowly that many places won't accept it any more) for various therapies. $6000. It's been that for at least 7 years (that's what it was when Snap was dx'd.) At that time, Speech Pathologists cost about $80/hr. Now, they're ~$120. Behaviour Consultants are ~$140. Occupational Therapy ~$100. Music therapy, equine therapy, art therapy, those all run about $80/hr. But $500/mo should cover it, right?

And what really bugs me, is that the only reason my kids are getting properly educated is because my husband has a good job in the civil service, under protection of the union, and that allows me to stay home. We can get by on one salary. We don't live high on the hog. We have a small townhouse in a strata (like a condo, for those not in BC) and when the social worker came to visit, she brought gift cards from the grocery store, because that's how poor we appear. We're not, we just don't spend on our house. At all. I can stay home, do paperwork, reports, sit on the phone with autism funding straightening out the latest snafu, hire SEAs, drive to equine therapy (which, omg, why does it have to be on the other end of the city?!), develop their curricula to suit them, do IEPs with the DL school, etc., where etcetera = teach my kids how to read and do math in such a way that learning is something they grow up wanting to do.

My kids have that opportunity. Now. Snap didn't. And I hate that. I hate that we didn't have the money for me to stay home and figure shit out when she was 8. That we didn't have the money for Psych Ed testing. She's paying for all that now. And so will so many other kids. And we'll pay for them too. Later. Either in disability, welfare, prisons, or homelessness. Because all those things rise when kids don't get proper educations. And none of our kids, especially not the ones with special needs, are getting proper educations in BC's shitty, underfunded, neglected, school system.

07 September 2016

Woo and science

I haven't had a good year. You'll notice that my most recent post was in January, and this is already September. What's up is that life, the universe, and everything (42!) has been getting me down. I've been fearful and angry. Too tired to even consider writing, never mind thoughtful writing.

But I had a bit of a breakthrough, and I'm hoping to get back on track again. Writing is good for me, even if it's just on my blog, read by few people.

One of my breakthroughs was kinda beautiful. Oh, people will judge, but who cares. I'm not entirely rational. Never have been. I go by what I feel, my gut, my instinct, whatever you wanna call it. It rarely fails me, and I often regret not listening to it. It's always kind of bugged me that I believe in things I can't see or prove, because I am a scientifically minded person. I like rationality. I like proof. I like data. But I know what I feel. I know how I feel. So it's an internal fight. I'll give up on things like God, unproven medicine, spirituality, prayer, energy, etc., for a few months, and then I get miserable, angry, and just all around shitty to people. Simply put, I feel better when I do irrational things like praying to a god I can't see, spending money on homeopathy (yes, I know! I really do!), etc. Some people tell me it's a placebo, and to them I ask, "So?" Seriously. So. Fucking. What.

If none of this is real, but I feel better, so? I feel better. I'm wasting my money on illusion? So? I feel better. Without drugs. Without doctors. Without weekly or monthly therapy. I feel better, for a lot less money than I see people spending on vacations, drinking, therapy, medications with serious side effects, etc. And what does it cost me? A few minutes talking to "myself" (God, the universe, whoever), a six bucks on a vial of sugar pills, and occasionally a therapy session with someone entirely unqualified by government to do therapy (What? You never got advice from someone without a degree?).

Now, of course, none of this means I'm going to eschew science, western medicine, or all rational thought. Of course not. I'm not suddenly going to decide my kid doesn't need seizure meds or that I'm never going to take an advil for a headache. That would be ludicrous and dangerous. I might take some homeopathy when I have a cold though. Or give some to the kids. Because if it tricks me into feeling better all on my own, that's better for me than some cold medication that can't cure the thing anyway. Or I might get acupuncture when I'm feeling tired all the time again. I feel better when I do that. Cool, eh? But quackery, Luna! Quackery. I know. I don't care.

I really got thinking about this when I saw how happy a friend is. She's really into something called Psych-K which is the woo-iest, quackiest thing I've run into in a long time. And my friend is Happy. People are searching for answers. Some go to woo. Some head for science. Some just get angry and try to bend everyone to their will, their view of how society should be. And some people get angry. They're clinging to their beliefs, angry at those who try to tell them it's horseshit, because in a way, they know it is, but they're using it to hold on to their happiness. I talked with my friend about this, because she's not particularly threatened, and she's not fearful. She thinks everyone would benefit from her program, and I don't. I think it's something that works for those who need it and are open to it. It allows them to heal wounds in a way that is different from cognitive behaviour therapy, or whatever the flavour of the day is in psychology these days. But it does work. For those people.

It's why energy healers are so popular. They're people who are really good at cold-reading people and telling them what they need to hear. Why's that a bad thing again? Because it's expensive? So's therapy. So are vacations. So is that liver transplant. I've gone to a few healers. First time was a lark. I thought it would make for a great blog post, and it was only $40. I was blown away. Suckered in, my husband said. :) But then he saw the changes in me, and how they lasted months. Months and months. (6 weeks is the usual standard for placebo effect time). And again, if it was completely placebo, if this guy tricked me into making myself feel better, how exactly is that a problem? Because it's not real healing? How isn't it? I mean, is it because the problem comes back? Does therapy cure you after the first appointment?

Or is it the "You are believing a lie" story? You can't believe in a lie, because... because that's not true. Bwuh? But if I'm getting better, how's it a lie? Because science can't prove it? Because it's been shown to be false? And? And again, so what? And hello, you know that science gets shit wrong all the time, right? And it changes all the time too. Is butter healthy? How about milk? Soy? High fat diet? High carb diet? Atkins? Ketogenic? One of my sons is on a drug that failed a clinical trial rather spectacularly. And yet it works for him. Prescribed by his neurologist, it's the best medication he's ever had. We're almost 2 years on it, so wellllll past the chance that the effect is placebo or confirmation bias. The latest and greatest in science says it shouldn't work. It does. Are we believing a lie? Or is it that science can't yet explain why it works? Same principle. So yeah, we're believing in what we see, what we experience, and what works for us regardless of whether scientist can prove it works or not. Pardon me!

So I suppose I wonder why people get so defensive about science, so frustrated with people like me who go by our senses instead of what others tell us is rational. What exactly are they trying to save me from? Happiness? Being wrong? Or is it about them being right? Is it about them needing to make me see how I'm wrong because it validates their view? I don't know. I do know that if it weren't a threat on some level, they wouldn't care at all. In the same way that I do not in the least bit care if someone thinks kale is edible, when I know it to be the most vile thing ever grown, but I don't go trying to outlaw kale. I mostly don't care what people think of my views. I really only manage to give a shit when someone is trying to get alternative medicine banned, or convince others not to go to church, or is screaming QUACKERY! at anything not mainstream in a bizarre attempt to convince others not to do the things that are helping them in some way, because the screamy angry person can't even fathom something that isn't rational being helpful. The resistance to letting people do whatever they want is really fucking weird. How's my acupuncture treatment hurting you? How's my reiki preventing you from living a happy life? Oh right, it's not. Not unless you find it threatening. And hey, that's your problem.

I have another friend, a science guy, a dude who really doesn't grok the idea of any of the stuff I'm talking about. He cannot begin to fathom that I'm happy to believe in shit I can't prove. I was telling him one day about how when I walk under street lamps they often dim or even shut off (and this was before that bit in Harry Potter) entirely until I'm past them. He was laughing, thinking I was lying, imagining things or bullshitting him. When I said that I really wasn't, he got quite upset with me that I would not take his word for it, as a physicist, that what I was saying was impossible. I was supposed to ignore my eyes, my own experience, and believe him that it was impossible. And then he visited me. And I took him for a walk. And the lights popped out or dimmed as I walked under them, and brightened up as I walked away. And he saw it with his own two eyes, and he believed me. His knowledge in physics was suddenly utterly irrelevant as he experienced it himself. My eyes were no longer lying. I was no longer a bullshit artist.

And so when I'm told to be rational, I remember that streetlights used to go out when I stepped under them (this changed a few years ago - I kinda miss it) and that a really smart physicist didn't believe me until he could experience it too. But it was real. Even if I couldn't show why. And the other things, the things I can't show in that way, I can believe them, even if no one else does, and it doesn't matter at all if it's 100% horseshit, because if a steady diet of horseshit makes me a healthy human, I'll just keep eating it up.

--Comments are moderated. Kindness would be appreciated--

11 January 2016

Do Some Harm?

Happy New Year Comrades!

The depression beast has been at me, so very little blogging has been happening. Also, Snap moved out into her own apartment, Crackle had 4 more vomiting episodes, and Pop takes a bunch of lessons, so I've been busy. I also acquired a genealogy project and got hooked on the stories. As usual. And of course, Christmas. One of our SEAs (special education assistants) quit and I had to hire a new one. So I've been a wee bit busy.

So if you've been here a while, you know how I loathe doctors. To be fair, Crackle currently has a decent team - his neurologist is fabulous, for example. But I feel like I've fluked into this, and should she leave, we're boned. I've told stories before. There was

Dr Prankster

Dr Fuckface

Dr Ego

Dr Douchebag

This shitbag

And I cannot believe I forgot to document my appendix surgery last April. What a nightmare that shit was. But before I get to that, I'll explain what's got my panties in a twist about this all over again. I read these three articles this week:

Doctor misses cancer patient's cancer, probably because he was treating her as a "neurotic jew", where neurotic = female.

Pain management doctor becomes chronic pain patient. Finds out what douchebags her colleagues are.

Teenager dies because doctors miss her cancer while telling her to "Stop Googling your symptoms."

And that all reminded me of this lady, who was having strokes but couldn't get doctors to believe her until she fucking video-recorded it. For fuck's sake.

So, this April, I had appendicitis. As you might guess, I'm not the first to go into an ER. I have to be scared I'm going to die before I'll go to one of those fucking hellholes, especially Vic General. But at 6pm on a Thursday, I went. I told the triage nurse my story, and got bumped from the main waiting room to the priority waiting room. I was in a LOT of pain. A lot. I was not given anything for it. In the priority room, there was a young woman who had somehow been stabbed with something in the eye. She was sobbing from pain. No meds. Hours long wait. An old man fell down the stairs and needed stitches. His wife sat there and bitched that "people with stomachaches" get to go ahead of him (Thanks, lady!) HE got a shot of pain relief.

At 9:30, I finally saw a doctor. He sent me for a CAT scan. Still no meds. CAT came back (the very next.. hour) and the doctor called me in to tell me I had appendicitis (DUH). At that point, I was offered Tylenol 3. Um, no. That shit is a nightmare for me. I hallucinate, my stomach hurts like I've been beaten there, and I get thinking everyone is trying to kill me. So I said all that and then said, "The only pain med I can tolerate is Demerol". The liar then said they don't stock that here. I said I'd wait, that I know it's available. He basically accused me of trying to customize the high I was going to get. I had appendicitis and he still treated me like a drug-seeker! Jesus. So then I said, "But I only need half the normal dose." And bingo, he went and ordered the demerol. Which took an hour for them to get to me. I was in a "room" (it was a storage closet - literally) with two other women. One was an addict with numerous issues - she was given no drugs at all, and she was shaking with pain (or withdrawal). The other, I don't remember well. So the three of us sat there in the storage closet, sharing stories and trying to manage our pain. It was awful. There was no call button if something were to go wrong. No one checked on us for 3 hours.

I finally got to surgery at 2:30am, with the same dose of demerol, long worn off. I was in pain, tired, frustrated, and scared. They took out my appendix, but not the gallbladder that I thought was the problem (and coincidentally, was completely full and really needed to come out years before). The surgeon said, "Oh, when we do gallbladder surgery, we also always take out the appendix, so yeah, we could have done that, but it isn't bothering you so we didn't." I just about cried. I'd cancelled the gallbladder surgery 3 times, and yeah, it bothers me. No one asked.

Afterward, pain management was a joke. Again with the goddamn codeine. I finally went home unmedicated because "We're not going to customize pain control for you" What? Why not? Shouldn't that be exactly what you do? I'd saved pills from after my c-section, and used those. This is why I save pills. I shouldn't have to. I should be treated with dignity and respect.

We are going to have to start demanding respect from doctors and nurses. I don't know how exactly, given their enormous power, and how badly they are overworked in ERs, how scarce GPs are, and how we literally need them for our survival. But I do know I am done. DONE. I am done being talked to as if I am stupid. I am done being condescended to. I am done being told not to advocate for myself by learning about my conditions. I am done being told to "stop googling symptoms" (even though I'm the one who figured out my husband's illness, my son's illness, and my mother's drug side effects, when doctors failed all of them.) I am done being told what I must do. Doctor's orders, my ass. Doctor's educated suggestion, that I may or may not decide to follow. That's how it will be. I'm done.