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!

2017.12.26

Co-worker: How was your Christmas?

Me: Fine! And yours?

Co-worker: Great! Our family came in from out of town and we went to Moody Gardens or The Galleria or maybe we traveled to see family all over the country. What did you do?

Me: Oh. The same. Family mumble mumble - sucks being back at work, right! Ha ha.

The truth is; being back at work is a lifesaver. Because what I actually did for Christmas was sit around all day listening to MW cry about how nobody likes us (her). 

Literally. All Day. Non-stop. Except for those few hours agonizing over the fungal infection on her foot. Man. God Bless Athlete's Foot! It provides a well-needed break from the everlasting litany.

All the stores are closed - there is no place to go. Trapped. Nothing to do but let dementia fill our home and hearth with a flurry of hateful words and recriminations. It is beyond sad. 

Context: MW tells her friends she spends the holidays with my family. She tells my family she spends time with her family. Therefore, nobody invites us to any celebrations. At one point, I actually risked telling MW her negligent friends were not so evil; after all, they all thought she was with my family.

That didn't go over very well, and I should know better. Stupid, stupid, stupid.

Of course, my family does know the truth. And I could probably wrangle an invitation from them if I secretly asked; but it is far easier dealing with the disappointment of having no company on Christmas than the fall-out of somebody accidentally saying or doing something to upset MW. At this stage, it is all but a certainty that will happen. 

So MW spends Christ's birthday viciously attacking all our relatives and close friends for being insensitive.

I try very hard to agree with her, while somehow calming the situation, and at the same time avoid getting terrorized myself. It is the highest of tightropes, it goes on forever, and walking it wears me out. I'm so glad to be back at work! 

Even if it is temporary - fucking New Years Day. 

Although, with luck, I can get MW out of the house on January 1st as the stores will be open. She'll still have the foot-funk, too, so maybe that'll work in my favor. 

Goddamn these holidays.

***

Here's something I've noticed: MW's HD movements appear to be more pronounced early in the morning and late at night. That's when her speech is worse as well. Why? I've read where stressful situation bring about the worse in HD victims - but I've not come across anything stating that the time of day would or should have an ill effect.

Odd.

I suppose the nighttime up-tick could be explained by stress. Sleep is such a difficult thing. And there's always so many items that need to be dealt with before getting in bed. But why is she so unwieldy come morning? She doesn't have to do anything but get up, dressed, and drive with me to the bus stop. Nevertheless, she can barely put a sentence together and watching her put clothes on is like watching the Weather Channel's tornado highlights.

2017.12.22

I've been making an ass of myself lately. Oh, lots of reasons. Drinking. Holidays. Uptick in MW's dementia. Just an overall sense of drowning in hopelessness and defeat.

So, desperate, I reached out on social media and became an ass.

There's nothing for me on facebook. It's a mockery of human contact; which hurts bad, because my real life is so lonely and isolated. Posting on facebook was too sad to handle, so I deleted my account - unfortunately I'd already embarrassed myself by telling my story and asking for help. Like a pathetic asshole.

Then I got drunk and wrote some blog entries. Those were a lot of fun. Deleted now, of course, and nobody reads this anyway, so no damage done. Except to my own pride. I'm better than that; a better writer than that. Eh, maybe I used to be. 

Anyway, it's past time to sober up (some) and get right. Five years so far and MW still doesn't think/know/believe she has HD. She doesn't (can't) work anymore and rarely leaves the house. We have no family connections - except my brother, who politely stays away - and only a handful of friends who also, not so politely, stay away. It is a meager existence, and the fucking holidays don't help any. All this to say, we won't make it through the new year. We can't last another 365. 2018 will be the year something terrible happens with MW and she'll wind up in a hospital, a grave, or treatment.

Or not. Clearly I'm very bad at dealing with this. So I may very well be pissing in the same stream come 2019. Unless I myself am in the hospital, a grave, or prison.

***

Full disclosure - when I started this entry, I wasn't drunk. I am now. It's the day before Christmas break and the office is closing early. Most everybody is gone and I'm drinking at my desk.

And trying hard not to embarrass myself.

In that spirit, let me document what's been going on with MW as concisely as possible behind a $4 bottle of Moscato. Jesus.

A little over a month ago, MW contracted some weird fungal infection on her foot. To guess, I'd say it's because she never wears socks when shopping for shoes. Whatever the case, she has a creeping black funk all over her toes. 

We bought a tube of Lotramin. It sat on the counter for three weeks. The fungus spread. 

MW would not use it because it is "medicine". Everybody knows taking medicine is always more dangerous than having the disease. Why, just look at prescription pharmaceuticals. So much better off not taking drugs and just, I don't know, killing yourself.

Sigh.

Eventually, however, she had to start using the cream. This only after she talked to everybody she knows and they all wondered why the hell she hadn't just started treating it in the first place.

They think she's crazy. 

Heh. 

Anyway, now MW is going through three pairs of socks a day. A sock can only be worn once, then thrown away. You can't wash it, you fool, because Lotramin is poison. Pure poison. If you put it in the wash, it'll infect all your clothes with poison.

I'm not exaggerating when I say, by the time this is over, we'll have spent hundreds of dollars on socks.

There is an upside to this condition. MW has become so obsessed with her feet, she doesn't have time for anything else. Which is not great. She still stays up all night, worried, constantly asking me to look at her feet, agonizing over every new blemish; but at least this is a real thing. It's actually there. She's not just blurting "Cancer!" over and over again while imagining some ache somewhere.

Still dementia, but easier to deal with. Sort of.

***

IONIS. 

I have to be careful now; this is the stuff that sets me off - especially when in my cups. 

IONIS is starting trials for a drug designed to "slow down" the progression of Huntington's Disease. 

Seems like something good to be a part of, no?

I'm low. I'm not much of a person. I lie to my wife daily. I hide everything from here. I'm a closet alcoholic. Oh, and the end result of all this cowardice and subterfuge is that I -and I alone - get to watch MW descend into madness and death. 

Because I have no choice; or rather, the only choice I have is to speed that grave-digging plow and put her in a hole early. 

Saint or monster. Toss a coin.

Now a wrinkle: this IONIS drug is a hopeful thing; but not a cure. Should it change my decision to confront MW with the truth? 

Monster says no; Saint says....? Saint says...? 

I have no fucking idea what Saint says.

I'm kind of afraid Saint's dead and Monster is all I have left.