2016.01.23

Seems like death is everywhere these days. David Bowie, Glenn Frey.... Lemmy. Angus Scrimm. So far Roger Waters is still hanging on, even though he's the one who figured out the pros and cons of it all way back in the 80s: "Why prolong the agony? All men must die."

All those listed but Scrimm died in their late 60s; like my dad.

Maybe this is a return to the normal life span. Geezers living to almost 100? What's the fucking point? Seems like we used to die off around 60/70. Makes sense to me.

But then again, for me, that's another, what? Twenty years? Errr.
 
My sister-in-law has, what appears to be, an inoperable brain tumor. I spend time with her children - my niece and nephew - and they avoid talking about it. Just as I avoid talking about MW's Huntington's Disease. Vague, oblique references to the "uncertain" future. Uncertain.

Fucking DEATH! There. That's the future. What's so uncertain about that? My sister-in-law with a brain tumor? She'll see her son graduate in 2016. Her daughter's 2018 graduation? Toss a coin.

Every time I think I've hit rock bottom, I break through another level. But come on; this has to stop. We've long since gone beyond the testing point - God pushing Job's nose in for giggles - fine. I'm still here, aren't I? And I'm willing to tote the barge for the duration - at least as long as the hull of this alcohol fueled tugboat holds back the water - but my sister-in-law? Unfair. Life? Unfair.

And, just as with my father, I am sick with worry about my sister-in-law's health but, always there in the back of my mind, are the disgusting, guilty thoughts that, hoo boy, if she has to be admitted to a hospital? Or when she dies and we have to go to the funeral? Man, dealing with MW through that is going to be absolute misery.

I wouldn't say I'm drunk now. I'm certainly not sober; but I'm not blind either. MW is out of the house now so I can write without interruption. I should be doing something better than this - pissing and moaning - but I've had a... revelation? No. A theory? No. Not even so deep. Let's call this an observation.

I'm a lapsed Catholic with a hate hard-on for God. Sure, MW has Huntington's Disease so that accounts for it, right? Indeed. But let's be honest - as soon as I left my mother's house and could stop going to church every Sunday - I did stop going to church every Sunday. I slept in. Now I'm the caretaker of a woman who is dying by fractions of inches and I can do absolutely nothing to stop the progression of death as it greys away all life from her skin, her hair, her lips and her mind. Her soul.

My brother is a Lutheran. I know, right? We were raised Catholic and he - heh - became a Lutheran when he married a Lutheran. His wife is dying from a brain tumor. Bad, yes, but it'll be over soon. Relatively soon.

My sister? Oh man, she's doing great! Healthy as an ox - great marriage; two glorious young sons - both righteously successful. College bound. Fantastic people. Rich? Yessir. House in the Austin hill country with nothing but more success on the horizon. Ridiculously perfect life.

Oh, by the way, she's very actively involved in one of those charismatic churches. Yup. One of those "God loves you and you can have everything" cults. Lakewood writ small.

So here's how it pans out, the way I see it now (sure, I'm seeing it through a bottle and a half of cheap red, but it is before my eyes). If you were Catholic but loose all religion (like me!) you are absolutely and unequivocally fucked. Hey, this isn't just me looking at my belly-button with a tear in my eye. Huntington's Disease is acknowledged as the "cruelest" disease known to man. And that's what I earned for turning my back on the church. A lifetime of suffering that is, without hyperbole, just one step north of hell.

My brother actively tossed a middle finger to the church. He became Lutheran! Holy shit! Hammering toilet paper on the cathedral door - the whole nine yards. For this he will loose his wife during the prime of their lives. Bullshit. God? Bullshit.

Now my sister. A charismatic church? That kumbayah hold hands and drop 10% in the collection plate scam? And for this she is rewarded with wealth and health and blessings beyond most people's dreams?

Hey God? Good one.  

2016.01.16

Hey now, I'm still here.

Two weeks into the new year and I'm still hanging around.

Turns out all I needed to do was start drinking the hard stuff again. Wine? Wasn't cutting it. I now use wine as a stop-gap until I can get real drink. That seems to be helping. Pour enough of the red on my heart and it keeps Ginger Baker away until I can wrap my lips around the real stuff.

Also, I've decided on vodka. Exclusively. Used to be I'd ping pong around gin, V. and whiskey, but I wised up and settled on just the one. The flying V. Gin caused too much sickness, whiskey only seemed to exacerbate my health problems, but good king V.? That's the stuff there. Sure, it causes wicked nightmares, but at least they're interesting. Plus, when I wake up in a sweat from some seriously FUCKED UP dream, and my heart is playing 1812 overture against my chest, I can pretend it is only anxiety. Nothing more.

Yeah, I'm good.

What about MW? How's that going?

Ehhhhhhhh. Okay, I guess. She's about to either quit or get fired from her job because she's been making a lot of mistakes lately. That'll be... bad.

Also, the house has become an absolute wreck. She refuses to clean; nor will she let me clean. Well, why don't I just "sneak clean"? Do some scrubbing while she's asleep or otherwise unaware? What the fuck? Am I so goddamned lazy I'm using my wife's Huntington's Disease as an excuse to live like a pig?

Ah-ha. See there? You don't know what it's like. You have no clue.

I tried. Of course I tried. But when MW noticed a clean floor when she'd left a dirty floor, an explanation was demanded. Um.... Wind? A freak wind blew through the house? Cleaned... the floor?

I'm pretty good at floating bullshit past my MW, but that's a non-starter. No. She caught me in the act and there was hell to pay. So I can't clean; she won't clean, and the house is falling apart.

A better example? The toilette bowls. I just had to take a day off work and spend $600 to replace two functional but dirty toilette bowls. MW wouldn’t clean them; wouldn’t let me clean them, but couldn’t live with them anymore. So she hired a plumber. But she was too embarrassed to be in the house when they came to replace the dirty utilities, so I had to stay home from work. Of course, she didn’t trust either me or the plumber to make sure the work was done correctly, so she was home too; hiding in the sitting room behind a curtain of tacked up blankets. She poked her head around the curtain a few times to give instructions; mostly about where the plumber should be allowed to walk – confusing the hell out of the poor guy – but the job eventually got done. The only positive about this situation is, because the toilets are new, I can probably get away with cleaning them on the down low every week or so without MW noticing.

Anyway, the upshot of all this? MW is looking to buy a new house. Makes sense. This house is dirty; we need to buy a new one.

Fuck yes. Why not? I'm all on board. Talking to real estate agents; driving around looking for good neighborhoods.... Sure, it'll deplete all our savings and put us back in an economic hole, but so what? We’re not going to live forever – why not act stupid now? It might be the last time we have to make such a serious mistake. After this, all our mistakes will be made for us.

The only good break in this situation is that, because I haven’t had a credit card in ten years, I’ve no credit and can’t get a load. Ha! I had to apply for a credit card and, am told by the bank, must make three month’s payments before I can try again to get a loan. So. That gives me three more months of drinking and grinning before I have to sign papers that’ll wipe out any hope I’ve ever had of financial security.

More than that – one of MW’s new home demands is that it be a one-story house. Somehow, someway, she understands that navigating a flight of stairs is now or will soon become… troublesome.

Who knows? Dwight Yoakum told me this drinkin’ will kill me…. Maybe I’ll get lucky before April.

Does this require more of an explanation? Those unfamiliar with the disease may think so. If all you know about Huntington ’s disease is from TV, then probably. On TV it is like a silver bullet of sickness. Terrible stuff, but –in one way or the other - resolved in 45 minutes (thank God). Maybe a season or two (I’m looking at you, House), but otherwise…. Bullshit. No, HD is a lifetime of suffering. And, depending upon circumstances, more than one lives are dragged down into the marsh of dementia. I drink a lot to prevent these thoughts, but oh thank God we never had children. It is just me, I alone, dealing with this. I’ve even isolated MW from her terrible, terrible family so they don’t have to acknowledge the fact that the next time they’ll see their beloved daughter/sister/cousin will be at her goddamned funeral. I’ve jumped on that grenade. And I’m going to lay here, fifteen, twenty more years before it blows. I and I alone.

So when I bitch about the house being in disorder or how MW is losing her job and those uninitiated wonder why I can’t be more proactive or helpful, my only response is death. Death is the ultimate answer for my ineptitude and folly. If I were to sit MW down, tell her that she’s sick, that she has a terminal disease that, yes, can be “managed” through medication and therapy, but not cured, then where have I put her? I’ve put her right in the fucking grave. I’ve shoveled six feet of dirt on MW’s lovely face and garnished it with a rose of prescription medication.

Remember – we both watched her mother suffer for 15 goddamned, terrible, insufferable, dehumanizing, fantastic, Godless, abhorrent years of the disease. “Hey honey, you have Huntington’s disease! But good news – I’ve just bought a lifetime supply of Depends and Ensure, so… Yummy!”

Making the decision to not tell her? Well, that’s an invitation for chaos to reign over our house. But what the fuck? The house is only myself and the stupid dog. We’ll live or we won’t, who cares?

2016.01.09

I'm having a real hard time with this.

MW has Huntington's disease, but I'm keeping this fact from her. In the shadows of my heart, I think she suspects the truth. Every so often she’ll drop a bomb like – “How will you act when I’m really sick?” or “Would you take care of me when I’m really sick?”

Like that.

So far I’ve been smart enough to play that noise off and continue with stat. quo. Smart? Maybe suicidal enough….

Here’s where I’m at:

I’m sick.

I’m not sure if it is a symptom of my enthusiastically embraced alcoholism, my self-diagnosed hernia, or something more sinister; but on a daily basis now my heart will pick a random time to start hammering against my chest and I’ll find myself short of breath. My vision will become unfocused. I’ll start to sweat just sitting still. Of course this perpetrates a kind of panic, with me looking for an escape – where will I go to lay down? Can I get there in time?

But…. Not because I’m worried about dying. I’m not. I just want to be out of the way. I don’t want to be an inconvenience for anyone. I certainly don’t want to wind up in a hospital. Rather a morgue.

Look. The only thing keeping me alive now is the fact that MW can’t function without me. Truthfully, it’s not like she’s doing great with me. So were I gone?

Better. All around, better.

Probably. Maybe. Who knows? Goddamnit.

One thing is for certain – I can’t just get sick. I can’t wind up with a health problem that requires any kind of prolonged treatment. I can’t have a stupid cancer or heart problem. I can’t have surgery – hell, if I could do that, I’d get this nuisance hernia fixed. No. Nothing that would require MW to be responsible for the house for anything more than a six or eight hour period would work.

It’d be better I die. Then she’d have no choice but to have real, professional people intervene. Not just me fucking everything up all the time.

So this is the tightrope I’m on – is the sickness where I’m at now bad enough to knock me off into my reward or is it some survivable trifle? If I were to stop drinking – ha! – would my heart settle into a peaceful rhythm? Have I gone beyond that?

Would it make a difference?

Every night lying in bed, aching and miserable, I swear I’ll never imbibe another ounce. Come morning I’m doing a mental inventory of every bottle in the house, planning my day. If I knew this would land me in the hospital, I’d stop. I’d totally stop. I’d be a religious convert. John Barleycorn must die like he was in a Tarantino movie.

But….

If my drinking will kill me? Like, one moment typing on the computer; next, gone?

Well. Pass the bottle.

Because at that point MW will be someone else’s problem. Someone more qualified than I.

I’m a monster. I’m a monster, aren’t I?

Hello?

2015.12.30

Christ, New Year all ready. So, what did I learn in 2015?

Well, I learned that I was wrong about the disease's progression. I had assumed that, by now, MW would be at a stage where she would have to be on medication and/or I would have to quit my job to be a full time care giver. Wrong. MW's still in full denial, I'm still working, and life - such as it is - continues to go on and on.

Great. Now what? Another year like this? Two? Five? Jesus....

What else? I learned I can't stop drinking; although one of my resolutions will be to knock it back to only wine. The hard stuff is taking a toll. The hell. They say one glass of wine a day is good for you. Then one BOTTLE a day must be at least four times as good, right?

But the biggest lesson - the milestone lesson; the life changing lesson; the one once learned can't be forgotten - I learned that I'm the type of a man who won't go to his own father's funeral because I'm too big a coward to fight against this monster.

I could have gone. I should have gone. But it was easier not to have to deal with taking MW and HD on the road and, hey, I'm all about the easier.

So many such things I skip because I figure an equivalent will come around again: holidays, graduations, other family events. Eh, I'll try to make it to the next one. Sure, once MW goes on meds or maybe when I can leave her with a caretaker or put her in a home for a day or two.... Then I'll show up for the college graduation.

Ah, but I'll only ever have one dad. Nope, not going to be another funeral for my father.

And I didn't even try to go.

Goodbye, 2015. You were shit, but even at that, you'll certainly be better than 2016.

2015.12.27

Rough - super rough - time of the year. No point cussing about it; not anymore. Suffice it to say Christmas was pretty awful. Again. But we made it through. New years shouldn't be quite as bad, and, once that's done, maybe we can keep on rolling another 365 like this.

Maybe.

It is too depressing to get into - depressing and repetitive - so I won't rehash every little bullshit HD thing that made this holiday season balls (imagined illnesses, sleepless nights, terrifying mood swings). Still, perhaps a little elevated from last year because during one of MW's horrific rants about how bad of a person I am - she asked me to go drop a gift off at the neighbors. They weren't home. When I came back she accused me of not even trying to give the gift. This set her off for a few hours of an absolutely vicious and vitriolic diatribe against me. And, yes, she became physically violent. Nothing I couldn't handle, but then, I'm a big guy - anyway, in the course of shearing me down one side then the other, MW mentioned that - if this was how I'd treat her when she asked for a simple thing like delivering a gift - how bad will I treat her when she really does get sick and need help.

Huh?

Headlights. Deer.

Is this a sign of self-awareness? Should I take the moment to suggest seeking help?

Of course I didn't. The tempest raged awhile longer then subsided. And I was able to drink my decision to make no decision away. Status quo retained through liberal application of wine and vodka. Oh, yes, of course that combination makes me sick.

Eh. I deserve it.

There is a particularly cruel philosophy of war that it is better to wound an enemy soldier than to kill him. Because the soldiers next to the wounded man will also be taken off the battlefield as they tend to their injured brother-in-arms.

There you go. Huntington's Disease proves that nature is a lot like the Russian paramilitary.

This time of year. This miserable, hateful, abhorrent time of year. When every where you turn is a reminder to "celebrate with family". Huntington's Disease has taken both MW and I off the field. Neither of us can maintain relationships now. I have become a human shield protecting MW from the world, allowing nothing in that could possibly upset or confuse her. That includes.... Every fucking thing.

The Russian paramilitary has another motto: "Strike first. Keep striking."

Yup. Huntington's Disease 101. MW isn't even 50 years old yet. I myself ain't even 45. She's ten, maybe fifteen years away from the grave. And, if I keep drinking like this, I may beat her there.

God but I hate the holidays.

2015.12.19

The music is so loud it hurts.

This is what I do when MW is out of the house. I can't stand to be alone, in silence. Also, I'm kind of drunk. That helps too. It is a necessity.

Tommy Conwell. Half a heart. For the record.

Okay, so we'll try this. MW will be back in less than 30 minutes so I have to make this quick and I can't get bogged down with the pride of correct spelling, grammar, decency, relevancy or intelligence.

I'm drunk. The song just changed to Jimmy Page's The Only One. With Robert Plant helping out.

Why am I even here?

Two night ago, I took in a snoot-full. It was an ill-advised drunk. I knew I shouldn't do it. Here's what happened; normally I cut a big tumbler in half: gin or vodka and seltzer. I sip that all evening while being a dutiful care taker to an HD victim who has no fucking clue. None. Does not even realize. Totally oblivious. Oh, her quiver is full or arrows: "this seems wrong, that seems wrong, is something wrong? why am I like this, why did this happen that way? am I sick? am I okay?" Everything is, according to me, fine. Absolutely fine. You are fine. The situation is normal. Please, sit. Watch TV. I'll cook, clean. Everything is fine.

I am a fleshing, boozy shield against the reality of HD.

Two night ago I took in too many arrows and sprung a leak.

It started in the morning when MW called me at work. She tripped over her own feet while walking at the mall and wanted to know if that was a symptom of "HT" as she calls it. What? No. Of course not. I trip over my feet all the time. Hell, you've seen me trip over my feet. I'm one clumsy mofo. You're fine. Nothing to worry about. Nothing at all.

John Lee Hooker now. I Want To Hug You.

I started drinking while at work. I've a bottle of cheap rotgut which I cut into a cup of coffee. You don't fucking judge me; what would you do? You're wife has been calling all morning, worried she has Huntington's Disease and you LIE TO HER. You LIE. ALL THE TIME. You don't know what else to do. And you drink. Whenever, whatever you can. Because.... just because.

Anyway, when I finally made it home that night, it was already pretty late. Fortunately, the tripping incident had, by that time, been pretty much forgotten. Of course, that just meant moving on to other worries. Was she getting a cold? Would she be able to sleep? What about Donald Trump? He's going to be president, you know.

Oh God. I filled my trusty tumbler 3/4th full of Gin that night.

John Hiatt. Everybody Went Low.

MW was on a tear that evening. Along with the usual worries, she was scheduled to be at work the next day. She hadn't been to work in two weeks. She was nearly panicked from the prospect of being around people again.

She bustled around the house; cleaning, fussing. It took forever to get her settled down enough to sit in bed and turn on the TV. I hadn't even had a chance to drink much, so I had to really make up for lost time. I guzzled the tumbler toot sweet. I had to. It was time to brush my teeth and rinse. I rely on the rinse to mask the booze, so I had to.

Anyway, when I settled in with MW, she kept on talking about stuff and, God help me, I replied. But.... heh... I was slurring.

MW noticed. She became convinced I was stroking out.

Beat Farmers. California Kid.

Have you ever tried to sober up, like, NOW? It ain't easy. I'm biting my cheek, biting my tongue. Trying so hard to speak around the mush in my mouth.

Anyway, pile this upon the pile of lies. I was eventually able to convince MW that I was just congested.

Okay. Have to go now and get ready. MW will be home soon. Have to start cooking and cleaning. One more song before I go. Georgia Satellites, Bring Down The Hammer.

2015.12.01

One down.

Thanksgiving was touch and go, but we made it. Next up: Christmas. Fucking Christmas. Worst Goddamned day of the year. And then, though it usually isn't too much an ordeal, we can't just dismiss New Year's Day out of hand. That can be a treacherous holiday as well.

How I hate this time of year.

Thanksgiving.... We were invited to a friend's house, but MW decided to skip it because there would be little children around and, yes, kids cause colds! She couldn't risk getting sick so we didn't go anywhere or do anything, except to the Indian restaurant to get food for her dad, and that's when things got tricky.

As we're walking out, we bump into two of MW's old friends. It has been years since we've seen them, so we stand around chatting for awhile and one of them makes a comment that MW has lost weight.

Oh fuck.

After we part ways, that's all MW can think about - has she lost weight? Why has she lost weight? Is she sick? Does she have cancer? Will she be able to sleep worried about her drastic weight loss?

Fortunately, in the years since we'd seen them, one of those friends had actually gained a lot of weight. A gross amount of weight. So much so that I was able to convince MW that a) they hadn't seen her in three years so they wouldn't really remember how much she weight and b) he'd gotten so fat, everybody must look thinner to him anyway.

That worked pretty good, actually, and even though she did spend much of the day complaining about the unreasonable expectations of the holidays, it wasn't anything that kept her up all night or caused her to go completely off the rails.

When I was dropping the food off at her dad's (MW stayed in the car - still hasn't seen or spoken with her dad in just shy of three years) her brother came out of his room to say "hi" to me as I was leaving. That was unusual - he normally avoids me. Then I get an email from him asking if I could proof read his book. Again.

Jesus. What a family!

Oh, and her cousin called and left a message yesterday. This is the big shot psychiatrist cousin who really should know better. He knows MW is at risk for HD, knows she is of age, knows she is acting erratically, but has never offered anything more substantial than criticism on how she lives. Anyway, I called him back mostly to prevent him from leaving more messages that might upset MW. He asked how she was doing, I said "fine". He asked if she was talking to any of her family and I said, "well, she's still working through some things." We exchanged more pleasantries and hung up.

Hopefully he got the hint and won't call again. Based on how he treated MW last time we were together, I wouldn't trust that motherfucker as far as I could throw him. And he's fat too.

Thanksgiving is behind us. Christmas on the horizon. It'll be hard, I know, but hopefully we can see it through. I am drinking again, so that helps.