2015.01.30

Lately I've been rough, downright cruel, in these journal entries. Blame it on winter. Also, I started drinking again and haven't yet reached the just-so saturation point of a sustained blissful haze - although that's coming along nicely, thank you.  

Nevertheless, I do feel bad about calling MW "the human paint-mixer" and "slightly demonic". Clearly, this ain't one of those hope and prayer type blogs. It’s a lot of pain and depression and futility. Anyway, I've said it before, and I'll say it now - mostly to salve my own guilty conscious - I am not the one dying a horrible death. That's on MW. I'm just the facilitator and equivocator responsible for making the transition either better or worse. 

And there's the root of this frustration: better or worse? I have no idea what the fuck I'm doing and lives are at stake. I'm not the right person to be in this position. I'm not strong. I'm not smart. Hell, I may even not be morally or ethically equipped to handle this. I have no religion; no empathy. The core of my personality would not be described as noble or honorable. Given a choice between doing what’s easy and what’s right; I’d go with easy every time.

Just my luck – there is no easy way out of HD. No right way either. When I first started this blog, I quipped that “murder/suicide” was in the top five answers to the problem of Huntington’s disease.

Ha fucking ha.

***

Speaking of “first started this blog”; remember when I thought it would be useful for tracking MW’s symptoms? Another laugh. Reading over it now, it’s just so much whining and self-pity. I know it’s a void, but if it weren’t – if someone did read it, maybe someone not familiar with HD, they would think I was the biggest bitch ever. Maybe I am.

So one last time, just to solidify my position: Yesterday MW bumped her head on the edge of the car’s glove box. I know, right? I didn’t think you could even do that, but she managed. Anyway, for the rest of the night she worried that the bump had caused some serious internal injury. She rubbed her head and asked over and over, “do you think I’m okay?”

Doesn’t seem like much, but this happens every night. No holidays, no vacations, 365 days a year MW spends the night worrying about her health while I stand there like a fool assuring her she’s fine. Is it a wonder why I drink? I want to sit her down and tell her – “No, honey. You’re not okay. You have Huntington’s disease. We need to get help.”

Or maybe just buy a gun.

And which of those choices would be easy? And which would be right?  

2015.01.28

The night goes fairly well. Rough start - MW has myriad little pains and worries that keep her up to around midnight, but eventually she falls and stays asleep. No four a.m. outburst, either. Overall a calm night.

You almost stop thinking about HD.

Then, while getting ready for work, she comes to you in the kitchen wearing her flannel pajamas buttoned all wrong, her hair flying away like she's in a wind tunnel, and that off-kilter, twisted rictus on her worried face so common to Huntington's Disease.

It is frightening to behold. The face, the expression, the way her body seems to move even while she's standing still; overall it has the effect of making her look inhuman. Slightly demonic.

She's concerned about her vitamins. Has she already taken them? Did I see her take them?

No. I didn't. Once again I turn away, no help whatsoever.

*** 

On the other hand, the gin worked great! After MW went down, I slept like a babe and didn't feel sick this morning. Only had one dream and it wasn't too weird: I was watching an old James Garner movie, circa 1960s, where he was a private eye investigating a house full of Ann Margret-esque lesbians. Yessir. I'll take that all night long.

*** 

A good night's sleep, no hangover, sun above and the temps crowding 80.... Time to shake off this funk. Oh sure of course I know I'm still nothing more than an HD vulture biding time, but at least I should be able to enjoy an afternoon walk now and again. Also, I've come to realize that part of the reason I've been so pissy (you know, aside from the obvious) is that I had to post an Amazon book review for a friend who just had another one published.

And that made me realize how much I miss writing.

What, this? This blog isn't writing. This is screaming at the void. Fuck you, void. I know I'm all alone, you don't have to be so smug about it.

2015.01.27

Bed-zilla is back. Turns out the risk of rolling off the box spring was too much to handle after all. The mattresses are back on the floor. C'est la vie.

MW got another critique at work yesterday. It didn't sound like anything serious - a customer complained about excessive confirmation questions, but the rules of the job dictates that MW has to ask them, so it really wasn't her fault. The manager just told her to try and be more "conversational" about it. Now MW is worried about being fired. Something else to lose sleep over.

***

The past few nights I've been doubling down on the vodka in an effort to create some of those weird dreams because even a bad vodka dream means sleep and, hey shit, I need some of that. And it was working for awhile. I had a real fucked up dream about a bird that had a badminton birdy stuck in its ass. Then there was one where I was desperately trying to make friends with a man who had an English accent. But last night I overdid it. I drank way too much and all I got was sick. Woke up shaky and haven't recovered yet. No, literally, my hands are still shaking.

Tonight I'll switch to gin. Not much. Just enough. Heh. As if I know what that is....

***

I'm still miffed at the stupid internet HD stuff. Its all so pathetically fey and pointless. Saw another Facebook page about wearing blue and purple for Huntington's Disease awareness - nothing but cheesy graphics overlayed with meaningless bromides. I've only seen one truthful blog so far - the trainwreck one - where the writer knows she has the disease and is brutally honest about it. No happy horseshit about hoping for a cure or, worse, God's mysterious plan. Hell, she even addresses suicide - #3 on the list of HD killers. She's the only one telling it like it is and, for that, has become my Huntington's hero. Unfortunately she's been pretty quite lately. One assumes the worse.

2015.01.25

The wheel keeps grinding.

Bed-zilla kept us snug for about a year, but I had to dismantle her last night. The problem came about when MW hyper-extended her thumb trying to rise up from the double queen mattresses on the floor. This pain, she was sure, would cause her to have to quit and go on disability. She would never be able to hold a spoon; work a mouse. Her life was effectively over. All because she hurt herself getting out of Bed-zilla! So the mattresses were moved, shuffled, re-shuffled, and now the sleeping situation is thus: MW sleeps in the sitting room on a mattress resting on a box spring. I'm on the other mattress in the foyer. We are separated by blankets tacked up over the entryways designed to keep MW's room dark, but still allow for enough light so she can make it to the restroom. Tricky business, this. It looks like we're trying to build erratic passageways for a lame haunted house.

Today, of course, the thumb felt just fine (it really was just a sprain and not a permanent disability. Go figure), so we'll see how long the current arrangement lasts. Recall that Bed-zilla was developed in response to MW's worry about bumping her head or falling out of bed. I asked her if she was sure about the box spring. That's a foot/foot and a half extra on the way down. She considered it for awhile and decided a fall from that height wouldn't be too bad. A better risk than having to push up off the ground all the time, anyway.

We shall see.

For me, for now, this is great! Sure, I'm still close enough to hear her when she snores or bursts out talking in the middle of the night, but we're on separate beds so I don't have to feel her spastic movements or hold her twitching hand. Peaceful.

***

In the past month, MW has declined two invitations to hang out with friends. She is afraid to be around these people because they all have small children and she doesn't want to catch a cold, or worse, the flu. Children are horrible when it comes to spreading disease, she says. And she can't risk loosing sleep because of any sickness.

Okay.

Here again, I could disagree. I could tell her it is worth the risk to spend time with friends. I could try to coax her out of this irrational behavior. Hell, I know time is short. She really should be having as much fun as possible now. Right now.

But I don't. I do the opposite. I shrug, say, yeah, kids.... Always sick. And this year is supposed to be a bad flu season, so....

Easier and safer to just stay home and cook and clean for MW while she watches TV. Plus, at home I can sneak upstairs and drink and drink and drink until I don't feel like such a bad person.

***

It has been a dreary, rainy, shitty winter; but the last two days have been sunny and mild. I'm still thinking about that trip to the University of Houston, but I've added another item to my list of hopeful accomplishments for 2015 - a good goddamned spring cleaning of Casa Muncie. See, I can't really clean the house when MW is around because, well, just because she's pretty demented is the best I can do without getting into the sad details (they involve a fear of moving dust around and toxins in cleaning supplies). So if she can continue working weekends for another month or two, I might get a chance to fling open the windows, turn the radio on loud, and swab this dump from steeple to floorboards. There is always the risk that she'll notice and get angry, but I'm not too concerned. She hasn't been noticing much recently and as long as I don't leave any incriminating sponges, clothes, or other cleaning supplied behind for her to fret over, what's the worse she can do?

Ha. Famous last words.

***

I know I shouldn't, but I've been looking at Huntington's Disease blogs, facebook pages, internet noise again. You tell yourself you want information - information is always good, right? - but the reality is you just want to find company for your special brand of misery. Then you get pissed because there is no fucking company for you. You're all alone. And all those bullshit "bare the truth" or "caregiver happiness" advocacy movements just raise your hackles. My truth is that I have to lie - HAVE TO LIE - all the time every day and the only happiness I have to look forward to is that first drink of the night - hidden away in the closet of my upstairs bedroom drinking, drinking, drinking. And when MW asks why she smells alcohol I shrug. I just used mouthwash, I say. Because everything has to be a fucking lie. Has to.

Then there are the movies about at risk people who get tested. I can't.... Can't even.... You know what? They all have families and support groups and friends and loved ones and go ahead. Go right ahead. If it's positive, there's the arms to hold you. A wide angle shot of all the loving arms to hold you. Negative? Good for you.

Good for you.

Me? I have to stop surfing the internet.

2015.01.08

I've recognize the portends. The end is coming soon. It started when MW insisted that we start talking to my mother again - something we haven't done in almost five years. Recall that the reason I severed ties with mom in the first place is because she yelled at MW about her "bad" behavior.

Well. Ha. Thanks a lot, mom, but.... Goodbye.

Now MW wants to "forgive and forget" and re-open those lines of communication. I tried very hard to convince MW otherwise, told her that my mother couldn't be trusted, but, as you know, what MW wants, MW gets; so we called and talked to mom on New Year's day.

It went well. Everybody was pleasant enough. No drama, but it was difficult for MW to sleep that night.

So I vowed to keep the phone calls with mom infrequent and short.

Here's the problem: last night MW saw "spotting" when she wiped after going to the bathroom, but her period isn't due for another week. This sent her into a downward spiral of insensible worry and, when she reached bottom, she decided to call my mother to ask about the possible causes.

I tried very hard to talk her out of it, suggested other, more sensible alternatives, but she went ahead and made the call anyway.

Fortunately my mother, bless her, didn't say anything to panic MW nor did she call MW's behavior into questions. So, again, it went well; but it's only a matter of time before this situation blows up. My mother can't be trusted. If MW continues to call her with these late-night, paranoid, hypochondriac, demented worries, mom will say something wrong. How can she not? I'm the only one capable of dealing with MW because I'm the only one who knows what's going on.

The question is: should I tell mom about MW's condition? Let her know what the situation is?

I just.... I just can't trust her. Her or anybody in my family. Not that I blame them. If the situation were reversed, I would definitely want to do something to help. Unfortunately, any such acknowledgement of the problem would spell disaster. If MW even suspected I told anybody about anything that goes on with her - the sky would fall.

So I wait for somebody to fuck it up honestly and on their own. Say something to MW that sends her into a tailspin. It doesn't have to be much, might even be entirely innocent, maybe just a thoughtless reply to one of MW's increasingly odd questions - but if I can't find a way to isolate her from my family, it'll happen. And if it doesn't happen because of my family, it'll happen at her job. Either way, I feel like buying some red paint and a white sandwich board: The End Is Coming Soon!

2015.01.09

Got lucky last night. MW went down around 9:30, fell asleep like a stone, and didn't really wake up again until this morning. She muttered some when I tucked her in, and she's still doing the Drinkers' Hour shocker, but no incessant worrying or dementia. A good night.

Didn't last long. MW saw blood again this morning and it took a concentrated effort to get her ready for work and out of the house. I fear tonight will be one of the sleepless kind as she seems extremely agitated about this spotting situation.

Just to get this out of the way - no, I'm not a gynecologist. Yes, I should probably encourage MW to see a doctor. But you have to understand - this type of stuff doesn't end. It is always something. And it is never anything. When MW first saw the spotting, she came to me and offered up the tissue, holding it out she said, "Look, blood". Okay. For the record, there was a slight pinkish tint on the tissue. Maybe. I mean it was so faint it was hard to tell. She wiped again, came back and it was even less noticeable. So I'll play the odds and tell MW that there is nothing to worry about. Menopause. That's what we're calling it. And who knows? Could be. MW is 48 now, a little young, but in the ballpark.

If this seems irresponsible, remember, studies show that Huntington's Disease patients are statistically less likely to have cancer and besides.... NOTHING IS WORSE THAN HD ANYWAY!

***

But this was kind of cool: MW's 4:00 a.m. shout out? Was in French. In her sleep she cried, "Je suis! Je suis!" with a passable accent. A holdover from watching news about Charlie Hebdo, no doubt. Still, if you have to be shocked awake in the middle of the night, it's nice to have a little Rosetta Stone action now and again.

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.

2015.01.02

What's new, year? Nothing. Same shit, different calendar.

Reviewing this journal, MW and I are in the exact same place we were back in early 2014. MW is still, for lack of better word, demented about sleep and diet.

She still complains about uncontrolled movements and "twitching" and I continue to lie about how that is perfectly normal.

I'm still sensitive (perhaps overly so) about her slurred, erratic speech and strange conversations; making it my life's mission to keep her away from family or situations where someone might call out this behavior.

If anything, the line I've been walking between caregiver and paycheck has grown thinner: I can no longer travel for work because I have to be here to take care of MW, but travel is part of my job description.

And, just like 2014, the only sure thing on the horizon is things getting worse. The big mystery is when and what flavor the coming disaster? Another year? Five? Ten? Will I need to quit my job and find something with more stable hours? More importantly, how will MW handle it when I can't hide the truth anymore?

Add to this mix my own failing health (exhaustion, alcoholism, depression) and 2015 looks to be another humdinger of a year!

***

Nothing for it but to carry on. In that spirit, here's more for the chronicle:

Last night was the bad night. MW couldn't sleep and kept waking me up until around three in the morning when she finally dozed off. Nothing special about this, standard operating procedure around Casa Muncie, the only thing is this time she didn't even complain about anything. Normally there's some ache or worry or something, but last night was all about not sleeping for the sake of not sleeping. All night long, she just kept asking me; "Do you think I'll sleep?" over and over again.

MW forced me to call my mother and wish her a happy new year, and I haven't talked to my mother in almost five years. This is extremely troublesome. First of all, MW demands that I keep the phone on speaker so she can hear everything being said. See, she doesn't want anyone talking about her, also, she needs to make sure I don't say anything to contradict her house of lies. This makes for a nerve-wracking phone call. I have no control over what mom will say and I'm never really sure if what I'm saying is good enough for MW. Bad mojo.

Surprisingly, my mother kept a civil tongue and didn't ask any personal questions so nothing was said to upset MW. A success, I suppose, but I'm certainly not looking forward to opening these lines of communication. I just can't trust my mother not to lob more grenades my way.