2014.09.30

I've noted a curious side effect of my situation: I no longer have empathy. For anyone. About anything. I've developed a sociopathic ability to not give a shit. The news is full of people suffering through wars and disasters - so what? They could have it worse. I know. People getting beheaded by terrorists in a foreign country? At least their problems are over.

Ah, HD. How you make monsters of us all.

Today's bout of self-pity and self-recrimination (not to mention a wicked hangover that just won't quit) has been provided by a disturbing conversation I had with MW last night. Well, conversation isn't the right word. I don't think I've had an actual conversation with MW for about a year now. Mostly she rants with occasional pauses for me to add "Um... well... um" until she starts up again. I learned along time ago to avoid definitive yes or no statements. Always equivocate. "Maybe" has become my favorite word. Agreeing with her is treacherous because you can't be sure to what you're agreeing. Many times I've gone along with one of MW's rants in hopes I was on the side of the angels only to wind up with an ass full of pitchfork. But then you never, ever want to disagree either. And God help you if your opposing argument is well-founded and stronger than hers. That's a mistake you won't make more than once. Grunt or make a non-committal shrug and your contribution to the conversation will have been expertly made.

Anyway, one of her favorite tirades is to complain bitterly about traffic congestion and how all the people moving here are impolite and, even worse, Asian. Especially Indians. Oh, how she hates Indians! All they want to do is come here to make money and they don't care about community or the Texan way of life. And they'll likely vote Democrat, too. Ruin the whole county. Nevermind that she herself was born in Bombay.

You can see where this kind of thing calls for a lot of "Um... well... um"ing.

On the car ride home yesterday she expanded the scope of her ire to include young people. She hates young people because they are rude and they're all drunk or on drugs. Then she asks me if I ever knew anyone who was drunk or on drugs.

Um... well... um

Then she brings up my ex-girlfriend, "Wasn't your first girlfriend a drunk?"

For the record, yes, my first girlfriend was a drunk and a train wreck and when that relationship went bad - it went very bad indeed. But it was almost thirty years ago. I suffer enough in the present. I didn't see a need to heap old agony on top of new.

So, against my own hard-set rules, I answered declaratively; "Not that I remember." That passes for declarative around casa Muncie.

And so the conversation went bad, very bad indeed. MW accused me of calling her a liar then proceeded to revisit every conversation she'd ever had with anybody regarding my ex.

Certainly more pain than I was expecting.

I've learned a lot about drinking this past year. I can regulate my intake to maintain lucidity while achieving a pleasant level of numbness. Last night, however, fuck it. I drank to get oblivious. I drank to get sick.

Mission accomplished.

Sick as a dog today, so did I overreact? Yes, it was a petty argument. In fact, it wasn't an argument at all. I just agreed with everything she said, I apologized, I swore I didn't mean to call her a liar, and she calmed down soon enough. Problem is she brought up my ex. I hate thinking about my ex. Thirty years and it's still raw there. Couple that with the ever-present fear that I'll do or say something to upset MW.

I recently read a blog entry about a family coping with Huntington's Disease called Eggshells where two sisters had been tested - one pos., the other neg., and the neg. one likened all conversations with her sissy to walking on eggshells. Seems a little tame to me. More like walking on blasting caps.

Another difference is I'm still trying to keep MW from recognizing the fact that she has the disease. Even last night, after the blow-up, when things had calmed down, MW came to me with a confused and worried look on her face, wondering if she'd acted irrationally. Had she yelled? Had she been too mean?

I assured her, no, she'd only raised her voice a little. And naturally she got upset. Who wouldn't, being called a liar? But she wasn't mean. I apologized again for my choice of words and we moved on to better things. Specifically worrying about if she would be able to sleep.

So tonight when watching the news, I'm sure I'll be feeling envy for that lucky bloke in Iraq whose problems are over.

2014.09.24

A few reasons why I'll be drunk:

It has been three days since MW has slept through the night. She's been waking up at odd hours and then making me fetch her food, water, sometime asks me to leave the bed then calls me back after a few minutes.

I rotate my nightly drink between gin and vodka. With gin, I usually find myself celebrating Mr. Wambaugh's famous "drinkers' hour" by waking up sick and sitting in the bathroom waiting for the world to stop spinning. Vodka gives me bad dreams.

I'm pretty exhausted. All the time.

Two night ago, MW fell out of a chair. I was in the kitchen cooking/cleaning when I heard a loud crash in the living room. When I got there, MW was standing over an upturned chair looking baffled. She wasn't hurt, but it took a long time convincing her that falling from a chair is normal behavior. I swore that I commonly tumble out of my office chair. Sometimes you just don't sit on it right and the wheels slip out. Happens to everybody. Happens all the time.

Take another drink and wait to see what happiness tomorrow brings.

2014.09.23

Tiny cracks are spider-webbing the façade MW has built up over the past six months. A year ago, when she had the breakdown, I assumed the worse: that she would have to accept Huntington's Disease and our lives would change forever. But she recovered, returned to work, and has been functional for the better part of the intervening year.

And now the bad days are returning. Sleepless nights are back, as are the occasions of uncontrollable 'twitching'. More than this, however, her employers have started to criticize her work. She has a phone job, and during her last review she was dinged for repeating herself to the customer. The comment was, when she talks that way, she sounds confused and unclear.

Deep breath.

I can continue ignoring the symptoms and lying to MW indefinitely, but I can't ask her employers to do the same. At some point they will either fire her or force her to seek medical help. My only hope is she'll quit before that happens. It is likely I could convince her quitting is a good idea because the job sucks and all that jive, but if they up and let her go... she'll be devastated. Worse, if they try to be "enlightened employers" and ask her to seek out medical help....

And I'm still wrestling with the bottle. Shit, as often as I'm drunk at work these days, I'll probably get fired before MW does. And my health is failing. I'm short of breath and get stabbing pains in my sides.

MW and I were shuffling for the grave, but she picked up the pace and I'm keeping stride.

2014.09.18

I spent the weekend searching youtube for hits on Huntington's Disease. Yeah, it was about as much fun as you'd expect, but I came away from the computer with a changed perspective.

I don't have the disease.

I'm not going to die like that.

So the question is: would I rather have HD or be responsible for someone who does?

Would I trade places with my wife?

If the answer is no, then I should suck it up, stop feeling sorry for myself and stop drinking. If yes, well.... Well well well.

The question comes with a lot of qualifiers, however, foremost among them being the fact that MW will not acknowledge the disease and so I'm tasked with hiding the symptoms from her. I don't blame her at all; we both watched her mother go through this so MW's ongoing denial may be healthy. For her. For me? Not so much. The daily lying and constant equivocation extracts a heavy toll. You really question your value as a human when most of your mental energy is committed to deceiving one who relies on and trusts you.

But if we could trade places, I would acknowledge the disease. I would get tested and offer myself up for medical trials and observation.

Sure I would.

Wouldn't I?

The truthful answer to that will not be found at the bottom of a bottle.

2014.09.10

Last night there was a gas leak around my bus-stop and MW had a petite panic attack. All the streets were blocked so she couldn't drive in to pick me up. She was close to hysterical when she called my cell phone, worried where I was and if I was okay. Not a big deal - I was able to calm her down, tell her to park someplace and wait for me to walk there, but I was alarmed when she'd told me about how she'd approached the police asking for information. She said they hadn't been helpful and she was quite angry with how they were handling the situation.

Had I not been able to talk her down, that could have turned bad quickly. The HD dementia flairs brighter when MW is upset and that type of behavior probably wouldn't go over very well with the cops. I do a good job keeping MW even-keeled when I'm around, and, as much as possible, prevent her from having to deal with disruptive situations when I'm not, but when external forces like this come into play....

***

Small triumph this weekend. As you know, MW makes me visit her father once a week because he's old and she wants to make sure he's okay. Of course she doesn't want to see him herself because she's afraid he'll say something negative (which he will) so she hides under a pile of jackets in the back seat of the car while I go in and check up on him. Usually this only takes a few minutes, and I leave the windows down, so it isn't like I'm locking the baby in a hot car, but this weekend the old man wanted me to drive him to the grocery store.

Quick on my feet, I told him I couldn't do it now, but would return in a few minutes. Then, as I was driving MW home so I could drop her off and go right back, I was able to convince her that hiding under a pile of jackets in the back seat of a hot car is not only ridiculous, it is also inconvenient for everybody involved in this farce.

So that's good, for as long as it lasts anyway. MW has a tendency to backtrack on these types of things.

***

And I had another incredibly petty triumph that day. See, I don't have a high regard for my father-in-law. I understand he's a different generation and all that, but his attitude towards HD is... negligent. At best. He'll yell and complain about MW's behaviour - just as he did his own wife when she was suffering - then he'll bring up a story he'd read about how a woman with HD killed her child but couldn't be held responsible for the murder because of the disease.

Dude. You tell me this story then bitch about how we never gave you grandchildren? Just because you're an octogenarian doesn't give you the right to be that fucking stupid.

Anyway, I got some satisfaction from driving him to the local Indian grocery store. It has been my experience that whenever I go into an Indian grocery store, I'll be the only white person there. More than that, I'm a fairly big white guy, so it's hard for me not to stick out. The attention I get when I enter the store makes me feel about as welcome as an INS agent looking to fill a quota. I suppose this will sound terrible to those who haven't personally experience a mixed... race? no, let's call it a mixed cultural relationship, but MW usually tells me to wait in the car when she shops at the Indian grocery and I gladly oblige. Neither of us really likes that type of attention.

And I could tell my father-in-law would have preferred me to wait in the car, too. He jumped out and hit the door without even waiting for me.

Ha!

I followed him in and stuck with him as he did his shopping. Oh, I could tell he was uncomfortable with me being there! Twice I was approached and asked if I needed help. "I'm with him," I'd say, pointing at the old man.

Yeah, I can be pretty small for a big guy.

2014.09.05

I visited the HDSA website and, in the Caregiver's Corner, selected the "Caregiver Coping Strategies" link. It brings up a blank page. Tch.

***

The rough nights where MW has problems sleeping for worrying about having problems sleeping are back. Eleven, twelve, one in the morning she's asking me if I think she'll be able to sleep. How can anyone answer that? Also, she's had a few nights where spasms have kept her awake.

Then she asks if it's normal for people to twitch like that? Yes, of course it is. And do I ever experience those sorts of spasms? All the time. It is absolutely nothing to worry about.

I lie right to her face. Look her right in the eyes and just lie my fucking ass off.

So am I a bastard or a saint?

All I know is that guy in the mirror sure looks like a sad bastard.

***

During these past months, I've been hateful of God and religion (righteously so), but even I know that's childish. Fair is for fairytales and nobody loves you but your mother and she's probably lying too. So I've recently expanded my irrational ire to include Science as well.

Fuck Science.

And not just because Science can't find a cure - might as well continue railing against God if that's what I think I deserve - but because Science can't explain this disease, indeed, it flies in the face of everything Science expects us to believe.

Survival of the fittest. Darwinism. Even propagation of the species where death is necessary for rebirth. Huntington's mocks all that shit.

Symptoms of Huntington's aren't manifest until the victim is middle age, therefore, the victims are likely to have children before diagnosis. Clearly, if you have Huntington's, you are in no way close to "the fittest", so why does the disease give you enough time to breed? Were it a virus, then that would make sense: the virus wants hosts. But a harmful genetic mutation that stays hidden until it can be passed on to future generations? Suck it, Darwin.

Population control, then? A way to clear out the old to make way for the young?

No soap. HD takes too long to be effective in that regard, even when you account for the recent drastic increases in life expectancy. Fifteen to twenty years living with dementia and chorea before casting off the mortal coil? That's not useful and it makes no anthropological sense.

Certainly we all have to die and some of us will go by disease. This is to be expected as part of the capricious randomness of nature. However, HD is less capricious and random as it it malicious and certain. Okay, yes, there is a 50/50 chance you won't contract it from your afflicted parent - but those are terrible odds! Those are "No Country For Old Men" odds. Is that the best you can do, Science? Woody Harrelson sitting across from me talking about, "{Nature}'s a psychopathic killer, but so what?"

No, I've no faith in Science and as much as I resent those who spew platitudes about God's mysterious ways, I have even more disdain for those who would mock them. You are equally as useless and clueless but you don't have the charm of being obviously ridiculous.

2014.08.31

I'm drinking again because fuck it.

MW is having difficulty sleeping again. Every night she keeps me up, putting me through the paces, until around one or so when she finally nods off. Then I'm kept away by the sounds of her limbs moving. Last night I was certain I heard a stranger walking around the house. Turns out it was just MW's feet playing over themselves while she dozed.

Oh yeah.

Then again and on the other hand, she does okay during the days. Goes to work. Every once and awhile visits friends. Happy sitting in front of the TV with her dog.

This can go on for a long time. This can go on forever.

And, as long as the world doesn't run out of gin, I'm committed to playing my part.

So if that's the way it has to be, then that's the way it is, and I need to stop pissing and moaning so much. To that end, I've started writing again. Short stories mostly; I'm not ready to tackle another novel yet. And nobody will ever read them because I'm posting them on a bogus blog under a fake name - like this one. See, once I was sure MW had Huntington's, I disconnected from society. I "retired" from writing and stopped all social media. I've been down this road before and I know that at it's end, it'll just be MW and I. Friends and family (especially her worthless family) can't be expected to hang in through the decades of shit that's ahead of us. When the disease becomes so obvious we can't hide it anymore, some of our people may visit, you know, for the first couple of years. Then they won't. And then won't Facebook just be awkward?