Posts Tagged disability

That time Steve Wozniak bought me a laptop


People seem to enjoy hearing this story, and Woz’s 70th birthday seems like a good occasion to tell it to more people. I in a lot of details of varying relevance (and was looking down at notes on my iPad a bit to keep track of them), because it my video and I may as well tell it my own way. But if you don’t have eighteen minutes to spare, there’s a short version in the next paragraph (to avoid spoilers.)

The short version: My then-boyfriend left my PowerBook in a phone booth, the PowerBook was held for ransom and not recovered, and meanwhile my sister emailed the Woz (who knew of me from having called me on my birthday half a year earlier) and offered to buy me a replacement.

A few years later, I met Woz, had pizza and learnt to Segway with him, and watched him play Tetris and pranks all through a concert of The Dead, but that will probably be a different 18-minute video.

If you think my life is ridiculous, well, you’re right, but also, you should see Steve Wozniak’s life! (His autobiography, iWoz, would be a great book to read to a cool kid at bedtime.) And check out the events, challenges, and fundraising going on at wozbday.com.

, , , , ,

Leave a comment

Two of Hearts: Spazzing Out


Two of hearts showing a selection of vegetablesI shiver with excitement at the coolness of the snow,
while flailing in delight at how the flakes float to and fro.
They say I shake for heating but my body seems to know
the fervor brought by white-on-white of sky and fractal tree,
and tenses itself tight on sight of all that’s cool to me.

My muscles are excited all the time, and so am I,
for music and for science and for humor and for pi[e].
They say my motor cortex might be part the reason why,
that these days they can thwart excitement through rhizotomy,
but when’s the spazzing fangirl vim and when’s it not o’ me?

In summary, my muscles have a tendency to spasm;
it seems to me those muscles can’t contain enthusiasm.
While technically I’m spastic I can say without sarcasm:
it feels like life’s fantastic and my body’s full of squee
so let your hair down (don’t relax) and come spaz out with me!

I am a raging fangirl (of improbably many people and things) with cerebral palsy spastic diplegia, and this is what it feels like. My other superhero secret identity is Hyper Spaz.

I came up with the idea for this several months ago, upon realising that my body was just as full of squee as my mind, though it was going to be a song, with an entirely different structure. I came up with the line ‘My muscles are excited all the time, and so am I’ about three weeks ago and decided to actually write it, with that as the first line, but I’ve just been too busy doing other things (including uploading videos of Jonathan Coulton, Paul and Storm, Mike Phirman, John Roderick, Zoë Keating, John Hodgman and some quitters from JoCo Cruise Crazy 3) and I didn’t spend very much time on it. So here it is, finally. It has an interesting rhyme scheme which I feel like drawing a diagram and investigating the topology of, but I think I’ll save that for later. During those three weeks I happened to find out about selective dorsal rhizotomy, which seems like a pretty neat procedure, though I wonder whether it would have an effect on the young patients’ eventual personalities.

This is the easy part of Thing-A-Week-or-so where the writer’s unblocked and the ideas flow faster than the cards that are supposed to inspire them and the time I have to implement them. I still haven’t put away all the aces of hearts and kings of clubs I got out before the cruise yet, let alone looked through all the twos of hearts, so I just used the first two of hearts I found with a tenuous connection to the topic. I’m glad I’m not a vegetable; I’ve heard their screams.

, , , , , , , , ,

8 Comments

%d bloggers like this: