Friday, September 5, 2014

2014.09.05

I visited the HDSA website and, in the Caregiver's Corner, selected the "Caregiver Coping Strategies" link. It brings up a blank page. Tch.
***
The rough nights where MW has problems sleeping for worrying about having problems sleeping are back. Eleven, twelve, one in the morning she's asking me if I think she'll be able to sleep. How can anyone answer that? Also, she's had a few nights where spasms have kept her awake.

Then she asks if it's normal for people to twitch like that? Yes, of course it is. And do I ever experience those sorts of spasms? All the time. It is absolutely nothing to worry about.

I lie right to her face. Look her right in the eyes and just lie my fucking ass off.

So am I a bastard or a saint?

All I know is that guy in the mirror sure looks like a sad bastard.
***
During these past months, I've been hateful of God and religion (righteously so), but even I know that's childish. Fair is for fairytales and nobody loves you but your mother and she's probably lying too. So I've recently expanded my irrational ire to include Science as well.

Fuck Science.

And not just because Science can't find a cure - might as well continue railing against God if that's what I think I deserve - but because Science can't explain this disease, indeed, it flies in the face of everything Science expects us to believe.

Survival of the fittest. Darwinism. Even propagation of the species where death is necessary for rebirth. Huntington's mocks all that shit.

Symptoms of Huntington's aren't manifest until the victim is middle age, therefore, the victims are likely to have children before diagnosis. Clearly, if you have Huntington's, you are in no way close to "the fittest", so why does the disease give you enough time to breed? Were it a virus, then that would make sense: the virus wants hosts. But a harmful genetic mutation that stays hidden until it can be passed on to future generations? Suck it, Darwin.

Population control, then? A way to clear out the old to make way for the young?

No soap. HD takes too long to be effective in that regard, even when you account for the recent drastic increases in life expectancy. Fifteen to twenty years living with dementia and chorea before casting off the mortal coil? That's not useful and it makes no anthropological sense.

Certainly we all have to die and some of us will go by disease. This is to be expected as part of the capricious randomness of nature. However, HD is less capricious and random as it it malicious and certain. Okay, yes, there is a 50/50 chance you won't contract it from your afflicted parent - but those are terrible odds! Those are "No Country For Old Men" odds. Is that the best you can do, Science? Woody Harrelson sitting across from me talking about, "{Nature}'s a psychopathic killer, but so what?"

No, I've no faith in Science and as much as I resent those who spew platitudes about God's mysterious ways, I have even more disdain for those who would mock them. You are equally as useless and clueless but you don't have the charm of being obviously ridiculous.

2014.08.31

I'm drinking again because fuck it.

MW is having difficulty sleeping again. Every night she keeps me up, putting me through the paces, until around one or so when she finally nods off. Then I'm kept away by the sounds of her limbs moving. Last night I was certain I heard a stranger walking around the house. Turns out it was just MW's feet playing over themselves while she dozed.

Oh yeah.

Then again and on the other hand, she does okay during the days. Goes to work. Every once and awhile visits friends. Happy sitting in front of the TV with her dog.

This can go on for a long time. This can go on forever.

And, as long as the world doesn't run out of gin, I'm committed to playing my part.

So if that's the way it has to be, then that's the way it is, and I need to stop pissing and moaning so much. To that end, I've started writing again. Short stories mostly; I'm not ready to tackle another novel yet. And nobody will ever read them because I'm posting them on a bogus blog under a fake name - like this one. See, once I was sure MW had Huntington's, I disconnected from society. I "retired" from writing and stopped all social media. I've been down this road before and I know that at it's end, it'll just be MW and I. Friends and family (especially her worthless family) can't be expected to hang in through the decades of shit that's ahead of us. When the disease becomes so obvious we can't hide it anymore, some of our people may visit, you know, for the first couple of years. Then they won't. And then won't Facebook just be awkward?

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