Sunday, June 22, 2008

This Strange World, This New Soul

I love the song from Yael Naim, “New Soul":

(Visual description: in the video above, Yael moves into an empty apartment with her piano and wallpapers the apartment so that the walls resemble like a lake in a wooded area. She pulls pictures from a box labeled “Best Friends” and hangs them on the wall. The video cuts to her friends playing instruments in the scenery featured in the photos. Yael plays a piano in the apartment. There’s a goldfish in a bowl on the piano. Yael paints squiggles on the photos of her friends on the wall. As she paints a squiggle on one photo to represent water, the video cuts to her friend, who then wades through the water she has squiggled as he plays his horn. Another friend wears a new inner tube around his neck as he plays his flute, and yet another plays cymbals that Yael painted near her hands as she marches through a field of sunflowers. Yael then removes one of the pictures from the wall, and there’s an oval circle left behind that’s a thin window to the world beyond. She pushes on the wallpapered wall, and, as the music pauses, it falls over, leaving one wall open to a real wooded, watery world that looks just like the wallpapered one. The other three walls fall away, and she stands on the floor/platform of the apartment in the middle of the lake. Her friends arrive by boat and inner tube playing their musical instruments, and they dance and make music on the platform. The goldfish is released into the lake.)

I hear from others that this song is used for a Mac commercial. I don’t know, I haven’t seen the commercial, and it’s sad that good music can be reduced to sound bytes. The song reminds me what a strange new world disability and changing degrees of disability can be:
I'm a new soul
I came to this strange world
Hoping I could learn a bit bout how to give and take
But since I came here, felt the joy and the fear
Finding myself making every possible mistake.

I make mistakes in dealing with disability, too, sometimes not being honest enough or direct enough about my need for a semblance of normal life rather than infinite medical care, in sometimes mistaking good intentions or awareness for curiosity or rudeness, for not doing everything I should sometimes, for doing too much at other times, for being beyond short-tempered at direct disablism, for not remembering not to discuss disability at all with some people. For all the friends who stick by me and put up with this whole new world with me, I love you and thanks. Where I put up interior walls with memories of places I've been before to cope, trying to make my exterior environment some mountainous, woody, starred, cool place it's not, my friends surround me even when I retreat. (And maybe someday, someday we will again be more permanently among the lodgepoles in the mountains, gazing at constellations we can't normally see in a cool, clear air.)

I am getting around better and doing more and glad of it. But I have to question why we praise people for getting around better, in my case why people who say they're proud of me for being able to do more or not using my scooter in some places (the low spine issues have calmed down with all this rest). I am really glad I'm doing better and hope it continues, but what if I didn't? What if I don't do better at some point? Acting overjoyed that I'm not using the scooter and praising me for it makes me feel bad that I needed it before and that I may need it again (and that I still need it for distance). My "goodness" or "badness" as a person are not contingent upon a low pain level, that I don't cry when I walk or drag along or make it very far. I am not a better person for walking when I can, as I do, nor a bad person when I need wheels to get through my day with some control over my life. I'd be giving up if I didn't use it when I need it, forced to stay in. I do what I can, but what's being praised is what's beyond my control. If I'm stuck in the middle of the lake, join me there. Dance with me. Be with me.

Bird (my daughter) returned safely from her wooded campy retreat. She had a good time, and I'm glad she went. It was really good for her, I think. And for her brother, who quickly realized he actually does miss having someone to argue with (and play with). Bird didn't get her fingers nipped off by wayward horses looking for carrots, get poison ivy while wading through tick-filled grass, or refuse to drink water and get dehydrated (thank goodness since she didn't like the taste of it). One girl did have to be carted out by air ambulance because of illness, thus proving in Mama Logic that warning my child about everything I can think of might possibly prevent disaster or mitigate one. Or not.

We survived a sleepover party for 11 last night. The 4 girls there (my daughter has a few over too) were very well behaved, umm, in contrast to the boys, who went completely wild for a while and would not listen when I could not get upstairs. Fortunately my husband quickly returned with pizza, and while they were all sitting in one place we had to tell them to chill out with the running in circles through the downstairs hallway/study/dining room/living room, use inside voices, stay out of hubby’s office, and be nice to other people and be patient and not yell demands at us since only one parent could help with some of the requests, such as pouring drinks or distributing pizza since I couldn’t lift boxes to access different kinds. We always wonder why we clean up before having a bunch of kids over, because we always have to clean up afterward just as much, what with all the revaccuming, resweeping, and picking up. I've learned asking questions sometimes works best: "S., is that my chair cushion??"

Really, I don't mind, I just get a little overwhelmed, and I think most kids really don’t understand why I’m not helping more. There's still a lot to do with groups this big. I'd get up for a few minutes, sit down for a few minutes. My son was happy to have all his friends there, and the kids were happy to be there.

We should have probably opened presents first, because once the erector set, Star Wars set, model rocket (yes, with explosives, whimper), new soccer ball, and flyer planes for everyone (favors) came out, and when they discovered the electronic circuit kit my son already had, they were fully and agreeably and nondestructively occupied. Yes, this is life at the gifted and talented and tech geeky birthday party. Pull out the physics.

I've learned how automatic it is for my kids to work around me and to do for themselves what I can't do for them. I feel bad about it sometimes, but at the same time they show respect around me and others. Last weekend when we stopped on the way back from taking my daughter to camp, a girl a few years older than Bird pushed pass an older woman on a walker, a woman who was struggling to stand very much--this girl forced the woman to stop and then go around her! She was a Christian, with a church group. And yet she wasn't thinking about anyone but herself. I see people show this kind of impatience with seniors and people with disabilities all the time.

Being taught about disability and being around people with disability teaches people they can slow down for a minute, that they can walk behind the slow individual for a walker; if they think they're slowed down for a few seconds, what about the person in front of them, who is slowed down for a lifetime? A person with a disability doesn't have a choice, but those around them do have a choice in how they react. My kids have learned from me to know when I can't reach something and to reach forward to get it, to walk carefully around me, and to keep the path clear of toys near doorways and walkways since I can't look down with the neck brace and can't get past if I'm using the scooter. But these issues didn’t come automatically. They came because I pointed them out to my children. I had to tell them. Early in life, as soon as they could get around. Watch out for little kids, watch out for people using crutches and canes, watch out for others in general since that’s what’s kind. Slow down for others who are disabled or impaired in different ways, to explain the board game questions to someone who can't hear as well, be patient with those who show language errors, give people time. Push your chair in and keep pathways clear. In this strange new world, we want to leave room to discover and room in our hearts for one another. Hurrying past, you might miss it.

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