There’s two ways your first words go: predictable or humorous.
You know the pair, because we all subscribe to one half of it or the other (almost all of us, but let’s not spoil my surprise). One’s ‘mamuhh,’ ‘daduuh,’ ‘bapuu.’ The other’s no, or ‘booby,’ or ‘shit.’ Good stuff. Warms the heart or tickles it.
But there’s no way to make a nice, heartwarming story out of my first word, because it was ‘terminal.’
I heard the story leading up to it many times when I was little. My father, doing dishes. My mother wrestling with a potted plant (in my head smoking a pipe for some motherly reason, not that she ever did that in living memory). The dog wurfing to itself for its own insane doggy needs.
Then from afar a whine, a cry, a shriek and a wail and all that good stuff. Nobody has smaller lungs than a baby, but nobody makes more of what they’ve got. So there’s cursing and frowning and mom’s halfway to the crib when she hears the sobs hiccough off and slow down, murmuring their way into happy coos.
Must be the mobile, she said she thought as she came to the room. Must be the mobile.
But since she was a mother and mothers are careful she opened the door a crack and checked anyways.
And look – there I was, happy as a calm, clumsy little half-thumbed hands reaching up up to the sky to snatch at the pretty thing floating near my head, ignoring all the bright yellow circling duckies and the pink hovering cow and the gently spinning kitty for a grey irregular rocky mass the size of my eyeball that was going around and around and around me, as if I were my very own sun.
It had already bored a neat, smooth-sided pair of holes through my mattress by the time the paramedics arrived.
My parents were informed people, and soon they were more informed than they’d like. They had information on average lifespan, quality of life, the fanciful unreliability of gravitopathic therapy, the scanty success rates of magnetotherapy, the social pressures, how to deal with loneliness, and so on and so forth.
So they felt just prepared enough to not cry the next time they saw me in my sickbed, smiling happy as a clam, still trying to reach for that little grey stone that was flying around my skull.
Terminal orbit.
Eight months later it was ‘pemminah obbih,’ and when my father heard me say that he just about dropped the dish he was holding. Then he did what he usually did when he wanted to cry, which was he congratulated me and gave me a hug.
Carefully. Anything in that ellipse around my skull didn’t stay there for long, unperforated.
It was my mother’s idea to have two birthdays. To make it seem more normal, something other than a sword of Damocles over my head, a noose shrinking just a little tiny bit tighter with every spin around my skull.
The cake for Sam was always exactly twice the size of the cake for Sam-2.
(The official, medical designation. Of course I know some fellow afflicted prefer to give theirs nicknames, but we made the distant home-y enough to not need to bring it closer still)
Sam-2’s cake was usually extra-frosted, mind. When I was four I didn’t finish it the day of the party, and the next day when I took it out of the fridge after dinner I found the icing had all gone hard and cold.
That made me curious, so for the first time in my life I reached out and with the extra quarter-inch of my brand new four-year-birthday arms I managed to touch Sam-2.
They’d prepared for that, of course. And they’d even warned me – though I paid no attention, and at the time I tearfully insisted oh no no nobody said anything. In the end, what made the lesson stick was a third degree friction burn and a broken finger.
After that I only ate Sam-2’s cakes hot. Cold ones got given to mom, dad, or the dog, whichever made them go away faster.
At school I stuck out, of course. Who didn’t notice the kid with the walking fence attached to their neck, wrapped around their skull like a cone collar? Big red and black stripes all over low-weight plastic… I looked like an inverted traffic pylon, or a road construction site.
The taunts stayed at verbal, thankfully. The teachers were always very welcoming, very polite, very kind, and very thorough in their explanations of what happened to anyone who stuck their hand in the path of Sam-2’s ever-so-slightly-decaying path.
“It’s not contagious,” they’d say soothingly. “Environmental factors, genetic susceptibility, bad luck under a starfall in the first trimester etcetera etcetera etcetera.”
And everyone would scoot their desk away from me. Just a little.
I’m ashamed to admit that I almost became a bully from it. Fear’s a pretty good drug for a little kid, and if my parents had been just a little bit less diligent I might’ve taken some pride in seeing the fifth-graders flinch as I walked by them. But instead it just made me feel lousy, and they, bless their hearts, took the time to notice that and help me with it.
And it worked. It honestly did.
That’s the thing I want to emphasize here. That’s the only really important thing in this book for you, the people I’m writing it for: you can live with terminal orbits. You can live a full life – just one that’s a little bit faster than everyone else’s.
All you need are some loving, kind, patient people. And maybe a cone collar.
By university I was wearing a sort of hat instead – a kind of super-reinforced sombrero of stainless steel. Sam-2 took chunks out of it like it was made of nothing, of course, but the important thing was it kept other things from getting close enough to get in on the fun.
Could be annoying, mind you. My first date leaned in for a kiss, whacked their brow on the brim, and was so busy cursing that if I hadn’t shoved them fast Sam-2 would’ve gone in through one temporal and out the other. But they didn’t see it that way, and that taught me a lot for my second date. First off, you can’t teach someone to be patient when their impatience stems from a fundamental lack of emotional attachment to your needs.
Second, explain the medical issues up-front immediately. It’s actually less awkward than what happens if you don’t.
Third, even if you’re busy – very, very, very happily busy – don’t forget to keep count and move your head.
That’s the sort of thing that makes people get me and Sam-2 all wrong. They ask me why I’m not crying, or cutting myself, or just freaking out all the time. Not in so many words, mind, and very kindly more often than not, but the question’s there: how do you live with that?
Well, it’s the only way I know how, isn’t it? A chronic disease is a full-time job. You wake up, you change the charge on your electromagnetic neckband,
(my own model is a very comfy Cragwhirl II. The IIIs are nice, but I find that the smooth pretty swirl of the design removed a nice makeshift headrest)
and you start counting. Every time it goes past your nose you’re counting the seconds until it pops up again. Every time it goes past a little to the left of your nose you’re counting the seconds until it pops up again. Every degree has its own clock and they’re all running at once and people ask me how can you DO that, how can you LIVE with that?
And I say that I just keep walking on, one step at a time. And then I ask them how they deal with their heartbeats, or remember to inhale, or to check their schedule every six minutes and their phone every three and to keep track of the names of every business contact in the past six years, or how they remember the names of six thousand species of freshwater snail or how to write a poem.
I do it very politely, mind you. Although here I do confess: if they ask more than twice, or they don’t listen, I lean in a bit more when I talk. To let Sam-2 get in on the conversation.
Let nobody say to you that you get where you got because of pity. That happens a lot at the start, a bit in the middle, and a lot, lot, LOT more near the end. “Oh,” they’ll say, “look at that ellipse. The thing’s nearly swiping her ear, no wonder she got the day off. Who’ll ask someone a few days away from getting cratered in the forehead to stay in late? Who thinks of us?”
Well, we have to, for one. Things that let can sit on your mind if you let them.
Don’t. There’s lots of people out there, and even if none of them are all bad, there’s far too many to spend your time trying to find the nice parts of each and every one. If one of them strikes your fancy, make nice! But if they don’t, then nod and smile and don’t care about a thing they say, because they’ll be more than happy to return the favour.
A bit of advice I’ve always wanted to give: look both ways before crossing the street. It doesn’t have anything to do with the condition, but my mother never told me that with a straight face so here’s my chance to do that. There! I’ve said it.
If more can be said, it can’t be said here. We’re all experts but our expertise only runs so deep – and especially so for a late-stage terminal orbit patient. It’s all over so quickly that it almost seems unfair to call myself more than a talented amateur.
But let’s not fuss over these things when there’s so much to praise – here I am, thirty-nine years old and none the wiser, but a lot happier than I’d have ever dared presume! We’ve come such a long way together, me and Sam-2, and it almost seems a shame that it’ll all come to an end sooner than not – the far ellipse of its orbit has decayed rapidly over the past month, and it’s scraped my nose up something fierce. But then again, can it really be said, by anyone, that any life was over too soeh89D