2018.01.31

His problems are over.

God help me, that's the first thought came to mind when I heard a co-worker, and friend of sixteen years, had died in a car crash. 

He wasn't even forty years old; two young kids, beautiful wife. 

And now his problems are over.

The Huntington's Wars have harden me. 

My friend wasn't withering away from disease; he wasn't in any pain - mental or physical. He and his family were young, healthy, and vibrant with big, big dreams. But my first reaction - unbidden and, fortunately unspoken - when I was told he'd died suddenly was Good for him.

His problems are over.

I loath myself and what I've become.

***

In keeping with the theme of self-hatred; I came very close to deliberately crashing the car the other day. It was in the fever pitch of another white-hot HD battle. MW was in the passenger's seat screaming at me. Screaming like a banshee. Screaming incoherently; painfully, a sound so full of hate and rage, it warps reality. How can this be real? The sounds coming from MW right now aren't human.

My foot went down on the accelerator; my hands twisted on the steering wheel. What's the harm? This can't be real anyway. 

Still, I kept it between the ditches.

I'm a long-time veteran of these wars. I've been back and forth over the minefields countless times. This explosion was close, but, I guess, not close enough. Not yet.

***

The screaming started when I made the wrong turn off the freeway. Kind of. We were driving to an unfamiliar town so MW could see where she was going to be interviewing for a job the next day. Yes, she's still trying to find work - no, nobody will hire her. Anyway, the directions were suspect so she told me to pull over and check them. I decided to make a left turn exit as that would make retracing our steps easier, plus, I'd spotted a convenience store where I could easily stop and look at the printed instructions. 

MW, however, wanted me to turn right, and said so very angrily.

In my haste to obey, I had to swerve and brake hard to make the turn.You don't disobey MW. Even when she doesn't make sense.

MW deemed the sharp swerve and heavy brake a rebuke upon her command; and thus the screaming commenced. 

***

I'm drinking too much, again. Last time I hopped on the wagon, it came on the heels of an unsettling reality break. I should probably try to get ahead of that.

2018.01.26

I drink to keep it on a level. When MW takes flight on a particularly erratic HD wind, and I need to stay with her, I drink. What else can I do?

It has become impossible to maintain status while sober.

There is a toll, however, and I'm paying it in full. 

Yesterday MW had a rough go of it. There's been an on-going issue with our phone service - basically MW got spooked because one of her former work acquaintances called too many times so she changed our number, paid to have all calls marked "private", and removed us from the internet "phone book". 

 She then decided to change everything back. Unfortunately, that turned out to be a whole deal, so she spent much of the day yelling at people on the telephone.

Also, she got a call from a potential employer who asked if he could interview her at a Starbucks. An insurance agent, he said his office hadn't been set up yet.

This really spooked MW. No way would she ever meet a stranger at Starbucks; also, once rejected, she was sure the guy would track her down. Even though the home address she posts on the job sites is a PO Box, it still had the zip code, so he knows what city she lives in.

Terrifying!

Finally, MW spilled popcorn all over the living room and yogurt all over the kitchen.

These problems and more were waiting for me when I got home.

***

Sober - no fucking way. Drunk - yes way. 

Drunk, I'm able to listen for hours to the paranoid rantings, and keep my wings level in the face of those gale force winds. Never easy, because if you try to lessen the intensity of MW's fears, she'll turn on you quick - citing that you don't care or you don't take her seriously - so you have to agree with much of it, while gently riding her back to solid ground. 

A time consuming process.

The phone. No real solution there. We're without home service, but we both have cells, so fuck it. Yes, MW commonly loses her phone and, yes, she never keeps it charged, so there will be problems, but this is one of those things I'm just letting go. Fuck it.

Which brings us to the messes. Popcorn everywhere; yogurt everywhere. And the kitchen looks like a bad comedy - food and dirty dishes in leaning tower of Pisa piles. 

My job to clean, ah, but only under MW's watchful eyes. It must be cleaned, but nobody is allowed to touch cleaning supplies or walk on the floor? 

How is this accomplished? Magic. Drunk magic.

***

Did I mention MW is having beaucoup trouble sleeping these days? Those in the know know melatonin levels in Huntington's Disease victims are wack. No surprise, then, that MW doesn't really get going until midnight - that's when she decides we have to move furniture around or do more job hunting on the internet.

Not only drunk; but tired as well. I'm staggering around, slurring and missing words. On a level. 

2018.01.22

Another lost weekend. Nothing gets accomplished when the household is locked down by HD. MW's inability to make decisions is crippling; especially because she runs the show. I can't go anywhere without her and she's incapable of completing simple errands on her own. Oh, she'll try - going to the grocery store or Target by herself - but inevitably she won't buy everything or the right things.

The weekends, then, are a time for me to get things sorted for the next five days. Except this is becoming more and more difficult as the disease progresses. Groceries, for example. First thing Saturday morning, I suggest we go and get that shopping done. MW agrees. Unfortunately, by the time she's eaten breakfast and gotten herself put together, it's already noon. Now we have to do the shopping she wants to do. When that's finished, I nudge her on the groceries again. She agrees and we drive to the store. Uh oh, it looks too crowded. Plus it's kind of warm. Nope. No shopping now. We'll come back later. After dark. When it's cool.

Understandable. She never actually comes into the store with me; only waits in the car. So, okay, we'll come back later.

Doesn't happen.

Doesn't happen Sunday morning either. Or Sunday afternoon. By Sunday evening, I kinda have to put my foot down and tell her that if we don't go, she don't eat.

And so forth and so on.

***

Three noteworthy behavioral event's happened over the weekend. The least pleasant of which was a particularly nasty bout of anger from MW. These fits aren't new, but this was oddly timed. The dog doesn't like to eat out of his bowl; he prefers it scattered on the tray. No big deal. Both MW and I sometimes give him food and treats on his tray; not in his bowl. As I did Saturday morning.

No problem

Until, about an hour after the dog had eaten, MW blows up; yelling at me, absolutely enraged. And, initially, I have no idea why. Finally, between all the cussing, I figure it out: she's angry that I put the dog's food on his tray.

The abuse is plenty bad and it continues throughout the weekend - with MW suddenly and aggressively yelling at me for everything - and nothing - I do. Again, that's common enough, it was just the delayed reaction to the event itself that struck me peculiar.

Also, MW had a rare moment of self-reflection when, while railing against pharmaceuticals, she ran that topic around to the point where she admitted she would have to take drugs if it turned out she had Huntington's Disease. But, she added the caveat that this probably wouldn't happen until she's in her 70s.

Good and bad to this: good - for the first time ever she opened herself up to the possibility of taking drugs. Bad - ho shit, 70s? She really things she's got 20+ years left? A lot of agony there. For a brief moment, I actually considered interjecting with an "it's later than you think" comment, but held my tongue. Monster wills out.

Finally, as Sunday comes to a close, and I'm busy cooking and cleaning well into the night, MW gets annoyed because I'm not sitting with her in front of the television. She demands to know why we didn't accomplish anything over the weekend.

So I gave her an account of all the time we'd spent spinning our wheels due to her indecisiveness (of course, I phrase it much more politely). She looked confused, and I had to go over it all a few times before she could place the events.

She lost the weekend. It simply slipped away from her. And, though I know better than to read too much into these things, she really did look like it bothered her. Like she knew it wasn't right; the way she'd behaved.

2018.01.18

Seems like I'm only able to write these entries when drunk at work. Appropriate, I suppose. The elucidation of the inebriated coupled with the paranoia of the drunk. Rather fine definition of Huntington's Disease, no?

Whatever I write now is going to be riddled with errors and in-coherency - because of the booze - also, at any moment someone could stop by my office and call me out for drinking on the job. Not a safe place. I loathe the though of revisiting this post, yet I'm compelled to write it because the disease is progressing sharply now. The lead domino is quivering and one ragged breathe can send it a tumble. My lips are sealed against this inevitability, but my fingers can still type....

Oh Jesus. Raymond Chandler, Dashiell Hammett, Stephen King all wrote their best while in the bag. Me, I'm just going to fuck this up again. Shamefully. MW deserves better. Better all around.

***

Circumstances have been remarkably shitty these past few weeks. Holidays, winter storms, cooped up at home - it has been a slice of hell. First NYD and the subsequent Casa Muncie Flood. The following week I had to take more time off to help clean the house - a futile effort. Which brings us to MLK day - more time off and away from work; the only place I have left to recoup and relax away from the constant dementia. And I'm no racist, but on that loathsome Monday, while I was stuck at home, being subjected to the inexorable hatred and punishment coming from MW's tongue, I silently cursed the man. Fuck you, MLK! Why why why? Isn't my life hard enough - now I gotta put up with another 24 hours of bullshit just because you're some kind of great man. I've got your great man hanging low, Bitch.

Then check this out: right on the heels of that wretched "holiday" comes Winter Storm Irma. Oh my fucking God. Two more days trapped in the house with cold madness seeping in every crack. Note that I'd only squirrelled away enough secret booze to last through the originally planned long weekend. Tuesday and Wednesday were dry as the desert. Painful. Sober. Tired and depressed.

Finally, back at work today. Drunk - as I should be. But also able to breath. And relax. Find a little bit of peace for a moment. Yes, the weekend is coming too soon. I feel ill thinking on it. At least I'll be able to replenish my vodka stash. That'll help.

***

Enough pissing and moaning - here's the real story:

I'm a miserable bastard, a worthless husband, I mock those who depend on me and hate myself with one pitiable qualifier: Maybe MAYBE I'm doing the right thing. But if I am, it still feels so fucking wrong. I rather suspect I'm just not man enough to actually do what needs to be done.

Most of the time I've had off during these past few weeks has been spent "helping" MW look for a job. What this means is that she'll scour the internet for leads, then make me apply for her because she has a hard time filling out forms. So okay. I apply. The she'll get phone or internet - or rarely in person - interviews which never go well. And she'll get rejection notices which I down-play. "It's not you - it's them."

Absolutely ridiculous and really, really cruel. I allow MW to go out and humiliate herself - Oh, I know the people who interview her think she's drunk or drugged out or something. When I hear her on the phone with potential employers, she's all over the map; mispronouncing or misusing words and not making a lick of sense. Then, after they pass her over, she'll ask me what she'd done wrong and I'll say "Nothing. They probably already had someone in mind for the job - they just have to interview other people for legality"

Pathetic. Heartless. What am I doing? How can I condone this behavior? I feel sick and evil; enabling MW to continue on this way. She's always been prideful - she would hate me if she knew I was lying.

Well. She hates me anyway. What's the difference?

I guess it's a question of how much I hate myself. Sure, she's said she "never wants to know" if she has the disease; so that's why I don't fuss about spending every waking hour serving the disease at home. It owns us; so what? Around the house, that's fine - but now I'm sending her out into the world, giving her hope that she can regain employment. Right. On the off chance she could make it through an interview, there is no way she could be trained for the actual work. They would let her go within the week. Probably not even that long.

Look, she can't even fill out a simple form on the internet. How could she possibly handle taking instructions from an employer?

***

As if that wasn't bad enough; MW is also taking two more classes from our local community college. Last semester I did all of the work in her on-line class - I got an A! but she did have to go to a typing class. Again, I did all of the take home homework, but, credit where due, she went to class. And got an A.

That was just a typing class, however, and this semester she's enrolled in a computer basics class. I don't see that going well.

She's also taking an on-line business math class. I'm sure I'll get an A in that, but how does this help?

It doesn't.

2018.01.04

Happy New Year!!!

Raise your glass to end of a year that, by all rights, should have been worse; and your middle finger to the coming year that most definitely WILL be worse. Probably tragic.

Because Huntington's Disease is relentless in its ravaging, and the calendar is its weapon of choice. In an HD house, nothing gets better - only worse. Everywhere I look I see decay. The thrum of a heavy-footed death march is constant in my head. Sleep is rare, but so what? The waking hours are nightmare enough.

Four days in and here's what 2018 has given us so far:

December 30th: some of MW's friends who were visiting from out-of-town changed their plans to meet up with her - pushing the event back and hour.

This egregious inconsideration sent MW into a cycle of anger/depression; alternately cussing everybody out, then weeping inconsolably. She refused to meet with them and spent the next two days - New Year's Eve and Day - sad, alone and miserable. We both did.

January 2nd: MW calls me around 11:00 at the office. She is confused because she just took a shower in the upstairs bathroom but still hears the water running. Is that normal? I take a guess and say it's the heater refilling itself.

Two hours later she calls again, this time upset to the point where I can't understand a word. I calm her down enough to get the story: she'd left the water running in the tub and it leaked into the kitchen's box light, causing a panel to collapse. The entire kitchen was flooded!

She needed me to leave work. She'd come pick me up. And I'd have to take tomorrow off as well.

And now I'm depressed. Work is my escape from the madness. And just like that, the pain of these brutal holidays is being extended indefinitely.

MW picks me up, but she has to get food first, so we don't get home for another two hours. Upon entering the kitchen, I see one of the box-light's panels has indeed fallen, but it didn't break and there is no standing water on the floor. Just some damp spots.

It must have all evaporated, MW explains.

Also, the tub itself didn't overflow. It must have been something with the pipes. Two hours of water flowing through them caused or exacerbated a crack or leak. Good news/bad. Good is the damage really isn't too bad - some water stains on the ceiling is all; bad, a plumber needs to be called.

The immediate mess, however, is something I could clean up in thirty minutes. Ha! Right. It took two days and over $1,000 to recover. See, the water must have been toxic so anything that it might have touched needed to be thrown away. Basically every dish, pan and utensil exposed in the kitchen - even if they were nowhere near the box-light and showed no sign of being wet. Then the floor needed to be mopped with bleach to kill the poison. Then again with laundry detergent to wipe away the bleach. One last time - scrubbed down with baby wipes because if baby wipes can clean poop....

Anyway. After all the shopping and cleaning, we were $1000+ poorer and well past midnight. The next day was more cleaning and moving things around for the plumber - who, of course, can't be trusted. Everything must be hidden and locked away. MW even wanted to hide the TV; but I was able to convince her that TVs are so cheap these days - nobody is going to kill us both just to rob a 55 inch.

Alas, when the plumbers did show up, we couldn't use them because they were black foreigners. MW doesn't trust black foreigners.

That's it for me. I'm out. I explain firmly but gently that I can't quit my job to stay at home and wait for a white (or Hispanic - because they work hard. But definitely no Asian!) plumber to show up. She want's the upstairs show fixed, she's going to have to handle it herself.

Done.

Bring it, 2018. Let's see just how low we can go!