Day 1

Kage Baker hated waiting.

Anticipation was not her favourite state. The wait for something did not heighten the excitement for her, nor add spice to the occasion. The only manifestation she enjoyed was wrapping up birthday presents the night before, and then displaying them to gently torture the recipient with futile curiosity – and she herself did go happily nuts trying to figure out what was under the ribbons and paper. A dedicated present shaker, Kage.

When something for which she had been longing became finally available, she wanted it right then. We frequently went looking for soundtracks to movies she liked on the way home from the theatre – Kage wanted to continue that experience right now. Sometimes I just didn’t tell her when some special film or book or game was coming out, just so I’d have a chance of giving it to her for her birthday or Christmas – and if she found out anyway, there was no help for it: she went after what she wanted like a hunting cheetah.

So what’s wrong with instant gratification she’d say reasonably. It’s not like I get bored with these things right away.

And in that, annoyingly, she was right. She didn’t get bored with new toys. Once her attention was engaged, it stayed that way – it’s why she was content to watch The Wrong Box (for which she had hunted for decades) over and over and over. Her favourite video games remained her favourites forever. And once Kage found something she loved – shoes, jeans, a particular rubbing spice for meat, a specific shade of sunglasses – she went to great lengths to duplicate it whenever she used it up.

Some of it may have been the Asberger’s. Kage disliked change, especially when forced on her from outside. But some of it was just that she never wanted to leave that level of satisfaction that she felt when she achieved acquisition. She hated waiting: but she could, conversely, prolong the joy of finally getting something forever. It’s a rare combination.

For my part – I learned long ago to be patient. I can anticipate happily, and enjoy a wait. (It’s why I always carry a book or ten with me.)  I think Kage taught me some of her staying happy trick.  I’d like to think I taught her to wait a little more peacefully, in turn. Countdowns were a big help in that. She learned to enjoy crossing things off the calendar: with big, malicious red X’s, usually, exulting over the destruction of another day between her and her desire.

I’ve waited 50 years to get rid of this damned kidney. I spent my high school years flat on my back – and not in any interesting John Hughes teen flick way, but literally staring at the ceiling because I couldn’t stand up. I became an expert in throwing up into bags, in empty Tupperware, in waste baskets and extra-large Slurpy cups – you throw up a lot with uremia. Admittedly, the slightest twinge of pain in my side now induces a panic attack in me – but I can drive several hundred miles bent over at a 20 degree angle.

I’ve been corseting since I was 14 years old. One of my sillier doctors was convinced I had a floating kidney, and advised my wearing girdles to keep it in place. Of course, that only helps if you put the damn thing on before you stand up … wiggling into a corset while lying down is not easy, even when one is a lithe 16.

I was so happy to be rid of the boning when I was 18, that I gave up most underwear for a while. But then I joined the Renaissance Fair and promptly ended up back in corsets for the next 40 years … but at least I could put them on standing up. And make them prettier, too.

You have time to come up with an astonishing range of coping mechanisms when something hurts for a half century. Patience wears out very quickly – but stubborn rage can get you through a lot. Burning hate, endless wrath, the determination to never, ever let your enemy win – my, that becomes a real help. My sweet pixie nature curdled a bit over that time, but my stamina became something positively mythic.

Tonight is, I sincerely believe, the last time I will lay down to sleep with the fear I’ll wake up with those iron teeth of pain in my side. If the laparoscopy works, the new incision will be covered with a mere band-aid: but even if they have to cut wider, and leave me with another foot-long scar, I won’t mind at all. It’ll be the last big red X on that particular calendar.

Tomorrow is Day Zero.