2015.01.05

Something new for the New Year: the past three nights, between 4 and 5 in the morning, MW has called out something horrifying in her sleep. The first night it was a crescendo moan/scream that absolutely froze the blood in my veins. The next night it was laughter - at first creepy, but after I became fully awake, it wasn't so bad. Then last night she called "Help!", just once, but very loud. Loud enough I worried neighbors might have heard.

She never woke up, but started snoring again almost immediately after these disturbances.

So weird.

MW talking in her sleep isn't unusual, but up to now it has been softly spoken and not very dramatic; replaying work-place conversations, phone calls, stuff like that. And three nights in a row, at almost the exact same time, has never happened before.

Good. I love laying awake in bed - alert, heart pounding - for hours before I have to get up.

***

Last week I accidentally deleted the music folder from my computer and back-up drive. A CD collection spanning 30 years gone in the blink of an alcohol hazed eye. And you know what, it didn't really bother me. Still doesn't. Sure, I could try to rebuild it, but who has another 30 years to spend? Not me. Good god, hopefully not me.

I mention it only because, thinking back on my favorite albums and the times in my life they represented, I realize how much this goddamned Huntington's disease has already taken from me. My wife, yes, of course, millimeter by painful millimeter it has taken and continues to strip her away; but so much more. I have no friends and my familial relationships are strained to the point of failure (if they aren't broken already). I can't go anywhere, do anything - I'm pretty much a prisoner in my own house.

Last year I sold back 150 hours of unused vacation time. A nice chunk of change, but still.... That's almost a month of time I should have spent doing something fun with people who love me or at least like me a little bit.

As it is now, time away from work is just more time gobbled up by the disease. Hell. People at work do like me a little bit. We don't do anything fun here, but it's better than being a forced participant in MW's descent.

I've lost all my music, but it doesn't matter. Those songs are just old memories of a person I used to be.

2015.01.06

Didn't have the 4:00 am nightmare jolt, but MW's sleeping patterns continue to befuddle. Last night while laying in bed, talking about something she'd seen on TV, MW fell asleep almost mid-sentence. She was talking then, suddenly, snoring. About an hour later, she came awake and continued the conversation almost exactly where she left off.

Strange but not as unpleasant as the recent spate of nocturnal screams. Consider it a good day.

***

The conclusion of yesterday's entry made me aware of how pathetic I've become, clearly, but also inspired me to recall and try to document the lives currently being dissolved by HD. The good parts anyway. No use dwelling on the bad - past failures and sufferings are all feeble in comparison to what's going on now; and nowhere near as agonizing as what the future holds.

First, an addendum: yesterday I bitched about what all I've lost to HD but forgot to mention that, because of the disease, I'll never have kids. This isn't as big a regret as one might think. Obviously it was good MW didn't have children - definitely not worth the risk of passing on the HD gene - but it was probably right that I didn't get the chance either. Look, based upon how badly I've fucked things up so far, its clear I'd've been balls as a parent. I don't know what I'm doing, I consistently make the wrong decisions, and I'm not strong enough to be relied upon. So I guess I all those kids I didn't have got lucky.

Anyway, although I enjoy dwelling upon my sadness as much as the next jerk, I have that niggling voice in my head constantly reminding me that it is MW, not I, who is dying ugly. Certainly there is no guarantee I won't succumb to Alzheimer's or some similar reprehensible fate, but the odds are I'll be very old when that happens. MW is going to start loosing her facilities within the next five, maybe ten years. By the time I start going under, I'll just be another forgotten old man, hopefully in some assisted living facility where they don't rape their clients too much. Death will be a sweet, hard earned but well deserved, release. MW, however, will know that she's dying while all her friends and family are experiencing the primes of their lives.

And they will not have much time or, honestly, the inclination to sit with her as she lay sick and incoherent, year after year, on her well-worn deathbed.

I'm the only one who'll be there. Drunk, sick.... But there. Marking off the day's along side MW.