2014.12.04

You play to the level of your competition; up or down. In this case, the opposing team is MW's nascent Huntington's Disease behavior. So my game is pretty much just functioning right now - hiding at work, cooking and cleaning around the house, and hopefully getting a little sleep at night - and if I can do that much without breaking a plate or spilling my drink, then hell. I win. No use trying to improve things or in making any plans - that would be setting myself up for defeat. Just get through each day with some semblance of normalcy in my actions. That's all I need to do.

For the record, here's the recent playlist of my opponents offensive:

MW called me at work today worried that she's been burping too much. She asked if burping a lot was normal and  I assured her that I have also burped too much on many occasions. This calmed her down, but Jesus Christ.

Holidays are hard, but this year Thanksgiving was exceedingly cruel. Partly because the day of was so good: we went to my brother's house, saw all the family, left before diner, and at no time did anybody inadvertently say or do something to upset MW - a very rare blessing indeed because just about anything can set her off. The next day, however, MW reached back into the past to find old injuries to drag forth and mull over. This managed to kill the rest of the vacation with bitterness and tears.

On the chorea side, her exaggerated movements are making it difficult to have her in the kitchen now and she'll spill her drink or drop her food more often than not on a daily basis.

And, of course, sleeping is still my opponent's number one weapon of choice. Every night MW asks "Do you think I'll sleep?". I always answer, "Of course you will." But it doesn't always work out that way. Most nights she'll wake up at least once, usually around midnight, to ask how long she's slept and then makes me run some errands (fetch water, adjust thermostat, etc.). She may sleep after this, then again, she may not. Those are the bad nights.

Also, she's started setting the AC down to 60 degrees at night. Freezing! The reason for this is because it is winter, but MW still wants to feel a cool breeze in the house. So she has to set the AC low enough to run all night, no matter how cold it is already.  

Finally, her hand. Every night she asks me to hold her hand as she falls asleep. And oh how the blessed thing twitches and jerks and spasms. Its like she's playing an imaginary piano - a song with absolutely no rhyme or reason.

There I am. In the dark, holding MW's hand. Feeling the disease. I may have won the day, but it will take the night because it never gets tired and it doesn't need rest. And time is on it's side.

2014.11.26

MW works part-time weekend hours and getting her prepared is always hectic. I wake up early and spend an hour or so in the kitchen cooking and packaging her food, but she usually doesn't start getting ready until about ten minutes before she has to leave and then it becomes a mad rush of can'tfindits and whereisits? Last Saturday, well past the time MW should have already left for work, I called out after her as she went into the garage, "Wait! You're not wearing pants!"

She came back in laughing. "Did you really think," she asked, "that I was going to leave without putting on pants?"

Well. Yes.

And that pretty much sums out how things have been going recently: I'm super-alert and guarded against coming disasters while MW continues to function fairly normally.

Certainly her regimented diet and hyper-sensitivity towards sleep are a hindrance - for example, tomorrow - Thanksgiving day - we won't be able to eat with our family or friends because she's worried that taking different food will keep her awake, and she has to be home exactly on time for both lunch and diner so we can't make plans with people which might interfere with that schedule.

But it has been over a year now since I started this journal and MW is still able to hide from HD and live a modestly productive life.

Still, the holidays are hard. I'm always scared someone will say or do something to upset MW - maybe even say something about her behavior or clumsiness - and that'll topple this house of cards right over.

Tomorrow is the first test. Then Christmas. And if we make it through that, who knows? Maybe we can keep chucking peanuts at the elephant in the room for another year.

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?

2014.08.24

Robin Williams killed himself, they say, because he was diagnosed with Parkinson's Disease.

Thanks to the "ice bucket" challenge, ALS Disease awareness is at an all time high. Indeed, they say this social media initiative has been so successful, they've raised a million plus for ALS research.

Huntington's Disease is a witches' brew of both these diseases with a dose of Alzheimer's mixed in for measure.

So between Mork stamping his "no-return" ticket to Ork and seeing some douche get a cold douche every time I turn on the computer, thoughts of Neurological Diseases are inescapable these days.

First things first - I have no sympathy, but complete understanding for Robin Williams' suicide. Sympathy is undeserved because Parkinson's ain't that bad. Fuck you, it ain't, I know. Understanding, however, because I've come to realize that suicide can be a valid solution.

Not an easy revelation to come upon, but one I feel confident enough to defend. And I was raised Catholic.

Huntington's Disease is a genetic trait one is born with. Like blue eyes. But it is a genetic trait that causes dementia and kills you ugly. There is no cure. Would it still be a mortal sin to commit suicide if you were born with HD?

No. And I would take that argument right to St. Peter at the judgement gates. You don't want suicides in heaven, then stop allowing people to be born with broken brains. You shit.

HD isn't a "life challenge". It isn't something that can be prayed over and conquered. It is a birth-right death-sentence and it is absolutely pointless and awful. There is no religious lessen to be learned here. Unless you count "suffer and die" as gospel.  

Regarding the ice-bucket challenge. It has been going on long enough now that we're seeing some back-lash. People don't like being shamed into charitable donations and some complain that they would rather donate to different causes. I've even seen a few mems about how it is a big waste of water. Whatever. Obviously it has been a successful campaign. They even tried a similar stunt for Huntington's Disease. A pie to the face or donate. Eh, that didn't catch on as well.

Nevertheless, a million plus to research a cure for ALS, which might also provide some relief for HD. That's a good thing.

Still. Something tells me even after all this - all the shivers and tax deductions - ALS will still be around a year from now. Five years. Ten. Twenty. A hundred.

The diseases will win. The diseases always win.

2014.08.21

Don't mean to jinx it, but if I make it through the coming weekend sober, I think I'll have kicked the booze for good. Been pretty drunk these past three months and it was starting to affect me at work. I can't loose this job; not yet, not until I have no choice but to become a round-the-clock-stay-at-home, caregiver. Got to sock away the paychecks, you know. Sure, MW will qualify for disability - sweet, I'll be living off my wife's social security! Every trailer trash boy's dream - but I know from experience we'll need more than Uncle Sugar provides for those little emergencies: making utilities handicap accessible, dietary supplements, hired help, etc..

Anyway, it has been... informative - spending three months inside the bottle. I've never had much patience for alcoholics, but now I certainly see the allure. Not only does drinking take the edge off tragedy, it also frees the mind to imagine greatness. All that self-motivation bullshit - I can accomplish anything! - seems real when drunk. Oh, the plans I made, the future I imagined! yes! as long as I kept the bottle to my lips it all could happen.

Now that the cap is on, I'm much less enthusiastic. But at least I'm employed. That's the most important thing. For now, anyway. Part of the agreement I've made with myself to achieve and maintain this sobriety is the understanding that as soon as I'm no longer punching a clock, I'm right off this goddamn wagon. By then I'll be spending the days watching MW die by inches. No way I'm doing it sober.

2014.08.23

The good (?) news is it stuck. I made it through the weekend without drinking or buying booze. Now what?

Back to basics: the point of all this was to chronicle MW's descent into HD. One year ago, right around this time, MW had the breakdown that caused her to quit a job and disconnect from her family. Since then she regained the job, but still hasn't seen or talked to anyone in her family.

MW has maintained the bizarre and highly restrictive diet she started one year ago.

She continues to be overly sensitive and regimented about sleep.

Extended conversations with MW frequently display indications of dementia. Paranoia. Fantastic delusions. Nothing I can't defuse or redirect when we're together, and she seems to do okay around her co-workers.

So it has been a year since I started this blog and, really, things aren't any worse than they were back then. Better, actually, because her family is shite and not having to deal with their relationship is a huge relief.

Certainly, I am aware of MW's slurred, stinted speech. How she skips or can't find words. Also, I notice the chorea; the difficulty in handing her things, her "clumsiness". I have to constantly clean up after her, especially when she eats. And, even more troubling, the increased frequency of her choking or coughing around her food. But I'm the only one clued into these symptoms and only because I've studied up on the disease.

Could it be I'm projecting? Maybe MW doesn't have HD after all. Maybe I'm the paranoid one.

Maybe.

Time, I guess, will tell. But holy fuck this waiting around for things to get worse is a bitch.

2014.04.17

The grenade is still there, ticking, but I’ve re-learned to ignore the goddamned thing. MW is, for all intents and purposed, functioning well. She’s back at work; socializing, living…. Sure, there’s still more than enough batshit – but that’s mostly confined to the casa. Me? I’m drinking again so it’s all good. Drunk right now, thanks for asking. Oh, yes. I’ll be good and ripe when that pineapple finally blows.

I don’t want to embarrass myself, but I feel a compulsion to make an entry in this journal. Forgive the flaws; but here’s a brief rundown of recent (possible) HD behavior:

MW still won’t go see her father – still makes me go in her stead. Used to be she’d let me go alone; now, however, she wants to come with and sit in the car in the driveway. This, she said, makes her feel closer. Anyway, last weekend her father walked me out of the house. MW had to duck down under the dashboard to hide. I was reminded of the award-winning flash fiction story about the young girl hiding from her lover’s wife. Then I felt like crying.

MW still has problems sleeping – talking all night about imagined illnesses, but last night she fell stone-asleep by, like, 9:30 at night. I’m not sure what’s up with that? Was she just so exhausted or is it something else? Something HD related? Seriously, it doesn’t happen often, but occasionally these sleeping fits come upon her and it’s like a switch gets flipped off. Her Aunt used to display the same symptom (and is now HD+). This may require research.

2014.05.06

Twice within the last two weeks I’ve found myself hugging the toilette bowl, cramming a toothbrush down my throat, trying to induce vomiting. Bulimia? No, nothing quite so glam. Rather, I’d realized I’d imbibed too much booze and was attempting to preemptively strike the resulting sickness through injudicious purging.

It didn’t work. Either time.

Yesterday, while taking a walk, I was staggered by a powerful recollection of a place I’d never been; an event that never happened. Hard to describe, but I stumbled over my own feet as I saw in my mind’s eye a familiar hiking trail – complete with trees, gently running creek, dappled sunlight – but knew that the trail did not exist. It was a figment of my imagination. There was a break in the path – I remembered – where you either had to use rock-climbing skills to traverse a steep bluff, or cross the water to the other side where there was no trail, only thick underbrush and weeds.

Also, there was a girl somewhere on the trial. I couldn’t recall if she was ahead of me and I had to catch her, or if she was behind me and I had to wait, but I knew she was there.

I could smell the wild scallops and feel the dirt under my hands from traversing the bluff.

Only this never happened. This place doesn’t exist. It was like a decades old dream suddenly exploded into my consciousness. I’ve always discounted claims of déjà vu and the like, but this was such an overwhelming feeling of place and time, I got rattled and had to sit on a park bench for a while.

And finally last night I experienced such a perfect “Lost Weekend” moment, I had to laugh. See, I totally forgot where I’d hidden a bottle of Canadian Mist whiskey. It wasn’t in any of the usual spots, so I frantically started tearing up my room. Wait. Pause. Take a breath. The guest room closet, yes, because nobody ever goes in there.

Crises averted.

Still, all these events combined make me think my brain is breaking, if not broken already. And it isn’t the alcohol. Well, maybe say it isn’t JUST the alcohol. Maintaining status quo with MW as she continues to descend into Huntington’s disease is like a constant mental hammer. The booze keeps this throb from becoming a full-on Ginger Baker drum solo.

Problem is: with both our brains breaking, what’s going to happen to us?