juthwara: (tired)
Ten years ago last Thursday, I was in our new house, still surrounded by boxes and half-done home improvements, when I got a phone call in the middle of the afternoon on a Friday. It was one of my mother's best friends, telling me that my parents had gotten in a car accident driving home from South Dakota.

Five years ago tonight, I got a phone call from my mother telling me my father had died. The end of July has historically not been kind to my family.

There's a psychologist with a weekly program on our local NPR station who's quadriplegic after a highway accident where a wheel came off of a semi and came through his windshield. He says the last thing he saw was a big black thing coming out of the sky onto him. As a psychologist, he said he's found that most people have a moment like that, where something huge comes out of the sky and changes life forever. By my mother's accident, we had been getting a steady rain of tires between dying grandparents, health problems and my father's diagnosis. But the accident was the really life changing, derailing event. I went from your typical young adult in my mid-twenties who didn't have to worry about much more than myself and my husband to giving up plans for a second Master's degree so I could take care of my parents. I don't think I have to explain what it was like to lose a beloved father to a terrible disease.

And yet, five and ten years later, life has gone on. My mother lives her life with the help of aides, and has traveled all over the world. I hate how condescending much of the language people use surrounding disability, so I recoil from adjectives like "heroic" or "inspiring," but I do admire her adventurousness and her willingness to travel despite the difficulties. Similarly, I go through my days pretty normally and spent today dealing with one kid getting over sickness, another starting to get sick and a lack of water from the water main break last night (it sent water shooting over the top of three story houses - pretty cool).

I'm not sure exactly what my point is here, except that I miss my father and I worry about my mother. Disaster rains down on us and somehow we keep limping along.

Saying good night

I miss you Dad. I wish you could have met your grandsons. They both look like you.
juthwara: (Default)
We're having a party for our 100th anniversary at work this weekend. It should be quite the shindig - live music, refreshments and a velocipede. After all, no party is complete without a velocipede, is it?

Mind you, we wanted a barbershop quartet, and a clown who could do face painting and balloon animals. But our Friends have recently gone from merely refusing to pay for anything over $25 that they haven't approved to not even paying for the things they had voted to pay for. After they were already purchased, natch. So it was a no-go on the barbershop quartet, and the clown, and the only reason we have the velocipede is that we got an outside donation for half of the money and we're paying the other half out of petty cash. It's a shame - for $500 we could have something really kickass and the Friends could easily have made the money back from refreshment sales and other fundraising at the event. But they've worked themselves into a state of cranky paralysis where they can't agree on anything long enough to do anything useful. There have been a number of times recently (most recently when someone who's been in the group for years and has known me for over 2 years had to ask me my name, and then asked me to explain the work I was doing as if it never occurred to her that the books don't magically appear on the shelves courtesy of the paraprofessional fairies) that I have pondered how much of a factor dementia is in our dealings with some of most difficult members.

But! It should still be a great party. I got to go into the books from the original collection that are in storage to make a display. As it turns out, there are many, many Victorian novels that have remained in well-deserved obscurity for very good reason. For every Vanity Fair, there are 20 of things like "Erma's Engagement."

I also went through the circulating collection and was able to pull out a number of hundred year old books to put into a display that we'll actually let people touch, along with the 1913 Encyclopedia Britannica. And most exciting, we got a big donation last Friday that included some fantastic old children's books. There were some hundred year old school books, and two of the original Bobbsey Twins books from 1904, the original ones where they were 4 and 8 and didn't solve mysteries. So right next to the original library ledger, we'll have some gorgeous old children's books for people to look at too.

We're going to have people in costume and we blew up a couple pictures of people in Victorian outfits and cut out their faces so people can have their pictures taken. It will still be kickass, just working around the Friends.

***

I think there is a special circle of Parenting Hell where you find yourself humming the electronic music played by your childrens' toys.

***

You know, one of the things I've liked most about Glee is how well they've done the disabled characters for the most part. They're real people, who don't either unrealistically ignore their disabilities or sit around all day meditating on their tragic lives. They live their lives and their disabilities make life harder to greater or lesser degrees, but mostly they get along with what they have as if they were actually real people or something, not just disabilities.

Which is why it's all the more irritating to see them trot out a quadriplegic to be both pitied and inspirational in this week's episode. It's like we suddenly walked into an episode of Seventh Heaven. I know, he talked about all the things he found in his life that he could do without being able to move, but he was still mostly a disability lying in a bed, there for our Inspiration. This is the same version of disability we've seen ad nauseum on tv, where the disabled person pops up to teach an Important Lesson, because of course the purpose of the disabled is to 1) inspire us all with their saintly suffering, and 2) allow us normal people to prove how great we can be by treating the defective just like they're normal. It's condescending and demeaning. Which is par for the course of how people with visible disabilities get treated in real life, but surely the benefit of scripted television is the writers have time to stop and think before they trot out the thoughtless stupidity?

And I know this isn't a subtle show, but couldn't they have dialed it back a little and just hit us with a Message baseball bat, not two by four?

And for the record, it's really pretty common for people with spinal cord injuries to still have some movement and feeling below the level of their injury. It's called an incomplete injury, versus a complete, which involves severe injury to the spinal cord and results in the complete loss of movement and feeling that people seem to think is what comes along with paralysis. But the likelihood that someone would get hit hard enough to cause a complete injury in high school football? Pretty darn low, even given it was a freak accident. My mother is a C4, which is what the quadriplegic character was, and she has some use of her right hand and enough use of her legs to walk a bit with a walker and to stand enough to make it a lot easier to transfer her from her wheelchair. And from what I saw when she was in the rehab hospital, that's not that uncommon. She was luckier than many, but even the horrifying diving accidents often had at least a bit of hand movement, enough to drive a chair with their hands (and can I just say, after five months visiting a rehab hospital every day, I am never, ever, ever diving into any body of water ever again, no matter how clear it looks).

***

Since looking this over, this is kind of a complainy post, I will leave on an amusing quote.

From a recent episode of Phineas and Ferb, the main villain was listening to Tom Sawyer on tape, translated into Evil: "Tom's dislike of Aunt Polly was only rivaled by his hatred of puppies."

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juthwara

May 2015

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