2014.12.31

Two nights ago the garage started smelling like someone spilled nail polish all over the place, probably originating from old paint cans or something. Oddly, this did not panic MW as much as I thought it would. She did suggest we check into a hotel that night, but it was a half-hearted attempt at paranoid dementia and it wasn't too difficult to talk her down. I recommended a trip to the hardware store for a carbon monoxide detector, applying the logic that as long as we were clear of a gas leak, we were safe.

Just between you and I, I did not put a battery in the detector. Hell, I wasn't sure the paint fumes or whatever wouldn't set it off, and that would have been a disaster. Besides, I figured even though the garage is connected to the house, the fumes probably couldn't seep through the walls and if they did, well, dying in our sleep from carbon monoxide poisoning wouldn't be the worse thing that could happen, you know, looking at it long run.

And, yes, I was drunk when making that decision. Ho! I wouldn't wish the vodka dreams I had that night on anybody.

Anyway, we lived to see another day. Now you might be wondering why I didn't just clean out the garage myself to get rid of the offending smell? Tch. You haven't been paying attention. MW would not let me clean out the garage. Not even if I wore gloves and a mask. She insisted on calling a junk service to come and haul everything - every blessed thing - out of the garage as scrap.

Fine.

Tools, lawn equipment, bikes, shelves, anything you would expect to find in a garage: trash it all. Don't bother selling it or giving it to charity, just chuck it.

Good. Great.

That's what I learned over the course of 2014: how to let it all go. Last December I probably would have tried to reason with MW, spent a lot of time and energy arguing with her, but not now. Not anymore. Whatever MW wants, she gets - any decision she makes is the right one and will not be questioned, only encouraged.

Who knows? Maybe this attitude will get us through yet another year.

***

Clearly I'm not one to make resolutions, but there are a few things I'm hopeful to accomplish in 2015.

First and foremost - I would like to walk around the campus of the University of Houston one more time. This doesn't sound like much, but it has been gnawing at me since I had that fit of near crippling nostalgia last Summer. Recall how desperately I wanted to revisit my hometown in Kansas? Well that will never happen, so I had the second-best idea to foot-cruise my alma mater and walk those hallowed halls where, for a very brief time, I was in love and ridiculous.

UH is maybe twenty minutes away from my house, so I'd planned on making this trip during the Fall on a weekend when MW was working. Unfortunately I got wrapped up in a trial and most my Sept./Oct. weekends were spent at the office, so I never got the chance. Then Winter came with the short, dreary days and this is the type of event that requires warmth and sunshine.

Now I'm thinking sometime in the Spring. Around my birthday, perhaps. Can't you just picture it? Flowers in bloom, sun-fed steam rising from the footpath between the Quad and the Towers? At risk of being tagged a creepy old man, I could visit the OB beach and maybe spot a sunbathing beauty. Ha! I remember spending time there with a stunning young girl, talking about blues music - Bobby Blue Bland and BB King - under a midnight moon. She never wore shoes. The bottom of her feet were disgusting. Or I could try to sneak into Taub Hall - hell, creepy old man is as creepy old man does - and see who is living in my old dorm room now. Tell whomever it is some tales of love and loss.

Of course this all depends on if MW can continue to work weekends for a few more months. If not, then I'll never get the chance.

It is New Year's Eve. I'm at work drinking vodka and seltzer because nothing else is going on. It's getting to the point now where I can tell it's time to stop writing. Goodbye, 2014. You fucking cunt.

2014.12.30

I'm this close to closing the door on one of my most vexing problems. I've finally convinced MW that she needs a sippy-cup. See, after one of her many, many spills I used the cowardly I'm-joking-but-not-really approach to suggest she needs a sippy-cup. She laughed then, surprisingly, agreed that it would make sense. After all, she's spilled enough water around the house to fill a swimming pool. The problem is finding one that
a) isn't made in China (everything made in China is poison) and
b) is the right size.
Most sippy-cups, as you can imagine, are quite small because they're for babies. *Sigh*
You may wonder why MW doesn't just use a sports bottle. Nozzle. Nozzle's too difficult to drink from.
Anyway, this gives me something proactive to do - a treasure hunt for a grown up sippy-cup made in the good ol' USA. Or Canada. Anyplace but China.

***

Happy New Year's Eve Eve! I never expected to close out 2014 in basically the exact same place it started. For one thing, the goddamn disease is degenerative so it has to be getting worse, right? Right. What's at issue, I suppose, is how slo-ooo-oow it's degenerating. I went back and re-read the older posts and the other reason I thought things would have to change before 2015 was the fact that I couldn't see myself living long the way things were going back in late 2013/early 2014.

But it's funny how you get used to bad situations. Kind of like that saying "used to worry about rich and skinny 'til I wound up poor and fat." I guess I used to worry about sane and sober 'til I wound up fucked and drunk.

I've adapted. I don't need to sleep much anymore. Outside of work, my only thought is taking care of and protecting MW from the reality of Huntington's Disease. I can barely even remember a time when I wanted anything more out of life except to just not have MW go off the rails crazy with worry.

So I raise my glass to 2015. Come on, motherfucker. Come on.

2014.12.29

Whenever I start to think I'm being overly sensitive about MW's HD symptoms, something like this happens: last night MW couldn't sleep because she was worried that the frozen meal she normally eats for diner contained too much sauce. The sugar from this extra sauce, she complained, would keep her awake.

Can't sleep when you're worried about sugar keeping you awake.

Well, just more of the same, right? Yeah, I suppose. Except normally I can at least try to defuse MW's nonsensical worries by offering practical arguments against whatever boogie is keeping her awake. I couldn't do anything with the extra sauce conundrum. A gentle suggestion that she was mistaken about there being more sauce than usual almost created a bigger problem ("I'm not LYING about this - there was more sauce!") and the proposition that condensation from the lid dropped back into the sauce thinning it out so it appeared to be more didn't gain as much traction as I'd hoped ("But you cook it the same way, in the same pan every night. So that doesn't make sense.")

Another long night, but I'm used to that.

To catch everything up: Christmas at my bro's went well. We stayed a couple hours, talked, watched some TV, and when it was all over MW had nothing to complain/worry about. Love you, bro, and your family!

Maybe I am hypersensitive - maybe they didn't notice anything at all - but there were a few times during our Christmas visit where MW got confused during the conversations or didn't understand something on the television and I had to explain it and, well, I'm sure they all noticed. But they didn't say anything. Love.

Something that really scared me: the day after Christmas I'm at work and my mom calls the house and, holy shit, MW answers the phone! Last time those two talked it was an all out fight. This time, apparently, things went well. MW told me about the conversation and nothing bad was said. Hunh. Still, I'm seriously thinking about sending my mom an email telling her not to call the house anymore - it is too risky. Mom can't be trusted not to say something that might send MW into a tailspin. In fact, even though MW told me the conversation went well, she didn't sleep at all that night. She didn't blame it on the phone call, but there you are.

Finally, the night before Christmas Eve (Christmas Eve Eve) I experienced the return of the glorious fucked up vodka nightmares! I won't even try to describe them, but holy shit it was a rough night. See, a vendor gave me a bottle and I drank half of it at work before getting on the bus and I guess it stuck with me until bedtime. Nasty business.

2014.12.18

MW runs the household finances. She's insistent that I am not capable of paying bills on time so this has become her responsibility. Alas, possibly due to the encroaching dementia, her concern over paying these bills has become quite pronounced to the point of being irrational. So yesterday we spent the majority of the evening planning ways to remind her when and how to pay bills.

I already had a calendar entry on my cell scheduled to go off every month on the 15th, but that never really worked. In actuality, I start reminding MW to make payments on the 10th and continued to remind her up to the 30th. Yes, pretty much every day of the entire month I remind MW to pay bills.

And last night she argued with me that I wasn't doing enough help her, see, because I even though I was telling her about these chores at least once a day, I wasn't telling her ALL THE TIME, ALL DAY LONG. Also, instead of just telling her to pay bills, I should instruct her to go sit at her desk because that's the only way she'll remember which bills need to be paid.

It took awhile, but eventually we got that settled. She had me add another reminder on my cell to tell her to go sit at her desk every night at around 9:00. I asked for an earlier time, because paying bills can be upsetting and having her upset that late at night is just begging for trouble, but that request was shot down.

You may wonder why I don't just ask to take over the finances. Well, I have. In the past. And that caused a pretty substantial breakdown - the upshot of it being that I wasn't trustworthy enough; after all, if I can't even remind her to pay the bills correctly, how can I be trusted to actually pay them myself?

HD logic at its finest.

***

I'm aware that sometimes these entries just seem trivial. I'm sure there are many people out there dealing with much worse behavior from their spouses or family members. The problem is, even though this starts off as petty bullshit, I know it will only get worse. The only thing I have to look forward to is someday, someway, somehow MW will have to start taking some-sort of medication. To help her sleep, to chill her out. The meds made her mother manageable - just lay in bed all day watching TV, sleep the sleep of the drugged out all night. For years. Maybe even decades.

Pretty fucking bleak, but that's the best case scenario I've got. And so I'm documenting the small things, waiting for them to become big things.

There is no hope here, and, yes, it is life and death. Wasted life, ugly death.

2014.12.16

I hate this time of year.

Unrelated to that statement; last night MW swerved the car into a curb. Hard. Only cosmetic damage, fortunately, but how it came about was unsettling.

MW is very concerned about the lives of our cross-the-street neighbor. She's never once talked to them, but believes the man of the house dumped his girlfriend (maybe wife) for a younger girlfriend (maybe wife) and is now putting himself at financial risk trying to make the young girl happy by buying her new cars and renovating their house. MW may be right about this, but I really don't care and try very hard to steer her away from watching them through the window then talking about what she sees. In fact, when the younger girl moved in, I spent a whole lot of time trying to convince MW that the man of the house probably didn't actually kill his old girlfriend (maybe wife) to get rid of her. I'm not sure I was 100% successful, but at least if MW still thinks he's a drug-dealing murderer, she keeps it to herself.

This sounds like a joke or a quirky little sit-com scenario, but it's not. MW actually lost sleep worrying our cross-the-street neighbor killed his girlfriend (maybe wife) to replace her with younger tail. Well, maybe it is funny. I'm just too tired to know the difference anymore.

Anyway, last night the younger girlfriend (maybe wife) was driving up while MW was pulling out and they wound up with their cars at awkward positions on the street. Eventually the situation righted itself and MW was able to drive away, but the encounter unnerved her so much that, when talking about it, she got flustered and ran the car into a curb.

Hard.

What if it wasn't a curb? What if it had been another car? How much longer can I let this go on?

Somebody? Anything? Help?

Right.

So, back to why I hate this time of year: they locked up the park behind the Houston Historical Society to prepare for some stupid holiday party and I can't walk under Jane Ellen's tree anymore. This is fucking brutal. First, understand that Jane Ellen's tree has been called the most beautiful tree in Houston and I wouldn't disagree. A grand, sprawling oak with heavy branches that crawl across the ground as well as clusters of limbs and leaves that cast ever-changing patterns of shadows. The word for it is magnificent. I used to eat my lunch on a bench there, but since we've moved offices, I only have time enough to walk over for a quick visit. Still, it is invariably the high point of my day.

Also, I've decided that's where I want my ashes spread when I die; under Jane Ellen's tree. I'm sure this is against some law - so many bullshit laws these days - and it may not happen, but it makes me feel good, walking under that amazing tree, feeling the peace and calm of that swath of dappled ground.

Someday....

But now, because of these goddamned holidays, even that little sliver of serenity has been locked away. Brutal.

***

Update: Just got off the phone with MW. As soon as I picked up she asked if I ever lost my balance.

Oh, I know the answer to this one: Yes, I loose my balance all the time. Lots of things can cause that. It is nothing to worry about.

Then she asks if loosing your balance is a sign of age.

?

Well, I say, sure. It can be easier to loose your balance as you get older.

No, she corrects me, not "age", but "H". You know. "H".

She means Huntington's - she just won't say the word.

No. Of course not. Loosing your balance can be so many other things than "H". It isn't even a recognized symptom of "H". It's nothing to worry about.

On and on and on.

And I'm sure I'll be talking about this tonight when I get home.

Something to look forward to.

2014.12.14

What was it last night, Wayne? What little bit of nothing kept MW up all night worrying? Hemorrhoids? Pimples? Mouthwash? Tell us, please. It is sooooo interesting.

Right. This has become repetitive. But here's what keeps me in the game: a few night ago, just after lights-out, MW started coughing/choking. Lights-on now and she's worried.

The coughing had been caused by what she felt was food in her throat. Why? She ate hours ago? Should there still be food in her throat?

Of course, I tell her. Happens to me all the time. I'll cough/choke on food anytime, anywhere. Perfectly normal behavior.

This abates the worry and, eventually, MW sleeps.

Me? I stay awake thinking, wondering - God, I'm such a good liar. Maybe even good enough to let HD kill MW before she even figures out what's really going on? And wouldn't that be a coupe.

What the fuck am I doing? Helping MW or the disease? And is there even a difference anymore?

***

Home from work, hit the door, head to the sink and start washing dishes to cook diner. MW stops me, pushes me aside saying she'll clean and cook for herself tonight. I know nothing good will come from that, but what choice do I have? I try to sound cheerful and suggest she let me take care of it while she relaxes in front of the television. No soap. She'd been sitting in front of the TV all day and got annoyed, maybe thinking I was making fun of her laziness.

So I backed off and let her have the kitchen.

When she'd finished, I went in to cook my diner. The dishes were covered with soap bubbles and many had chunks of food still stuck to them. So I had to wash them again, being very careful not to let MW see me doing so or else, I knew, she'd get pissed. Complain about how useless I am when it comes to taking care of the house and how she's the only one who really knows how to clean and I should just let her take care of everything.

I've received that rant before, lots of times, and it really kills an evening.

So I was sneaking around the sink, washing on the fly, when she complains about there being chicken in her food. Turns out she'd prepared the wrong frozen meal and had already eaten half of it before noticing.

Now this is real trouble. She is certain she won't be able to sleep because the frozen meal she'd just ate had too much sugar.

Quickly I dumped what was left in the trash and assured he she really hadn't eaten much, not enough to make a difference, and started cooking the correct meal.

She seamed dubious, but after around a dozen more reassurances that she would be able to sleep, she calmed down.

Part one. Part two came when, close to bed-time, she asked for one of her floss picks to wedge some food from between her teeth. Oh no! The floss is coated with a mint flavor - a mint flavor that certainly contains sugar!

She grabs a roll of toilette tissue, wads up a fistful and crams it in her mouth to blot out the mint flavor.

Oh now. Now for sure she won't be able to sleep what with all the sugar in her body.

This time the story has a happy ending. It was another one of those odd, but welcome! nights where MW fell asleep almost as soon as her head hit the pillow. I honestly don't understand it - she seemed so riled up just before I turned off the light, but within moments I hear snoring. No complaints, it's just kind of weird. Anyway, she did wake up a few times during the night to ask how long she'd slept, but these interruptions were short and, overall, she got a good nights' sleep.

2014.12.09

Yesterday MW got criticized at work for taking sloppy notes and her manager suggested she speak with more enthusiasm when talking to customers on the phone.

Disaster.

She spent the evening in a near panic state; worrying she'd be fired, wondering if the boss hates her, trying out voices that sound more enthusiastic.... Fortunately she did calm down enough to get a full night's sleep, but it brought to light the fact that, though I can shield her from the disease while around the casa, at work she's on her own. I can't prevent her coworkers from addressing the fact that she's slowly loosing her mind. Entering sloppy notes in the computer, for example, won't improve. That'll just get worse. And talking to customers on the phone - which is the biggest part of her job - will also get worse as the stuttering, slurring, and dementia take hold.

I watched MW as she railed against the evaluation last night. When excited, her face contorts into a frightening grimace and her body movements - arms and hands especially - are disjointed and erratic. She looks like a girl from one of those stop-motion Japanese horror films. Chor-Ring-ah.

"Thank you for calling! How can I help you!" she wails, a grotesque smile on her face, her voice a parody of eagerness. Then she asks if that sounded enthusiastic enough. That's how, she says, she'll have to answer the phone from now on. Especially when talking to people with Spanish names because her boss is a Mexican and those people look out for each other.

She's not joking.

***

Fifteen years ago my brother-in-law wrote a book. He's been editing it ever since. Now, once again, he's started emailing me asking for comments and critiques. I've already read the damned thing, many times, so I skimmed the revision and spouted off some lame, rehashed advice. Truth is I've lost all interest in writing and literature. Oh, I still read, but only old science fiction and mysteries. That's about all I can handle these days. Makes me wonder how much damage I did staying so drunk for so long?

Besides, my bro-in-law hasn't seen his sister in over a year. None of her family has seen her, or even spoken with her, in over a year. You would think he'd ask about that instead of his stupid book. Hell, I might have killed her and buried the body in our backyard for all they know. Useless tits.

2014.12.08

I was premature thinking I'd quelled the great burp panic. That night MW and I lost sleep worrying about burps. At one point she asked if anyone had ever died from excessive burping. I assured her she would be the first.

Other HD behaviors of note: Last night MW informed me that she'd bumped her head. She took me to the place where it happened, showed me how it happened, and asked if it was anything she needed to worry about. The skull is very hard, I said, and lightly bumping it against a wall is common and harmless.

Saturday MW dropped her lunch at work. Recall that her diet is incredibly complex and regulated. Here; I might as well take the opportunity to document what and how she eats. Also note that, except for the three days she doesn't work - Tu-Thu - I'm responsible for cooking and cleaning. And even on those days I still have to clean as the dishes will be piled up when I come home, and cook diner as well. Anyway, without further ado, MW's diet:

Breakfast (before 8:00am):
Two pieces of bread with peanut butter
Eggs (two with yoke, three no yoke)
One banana
One spoon of yogurt
One spoon of sour cream

Morning snack (between 10:00am and noon):
Half piece of bread with one slice of cheese

Lunch (between noon and 3:00pm)
Frozen meal (the same kind every day)
Fish (either Salmon or Mahi Mahi)
Beans (Garbanzo, Black Eyed Peas, and Black Beans; each ground in the blender to make a sort of paste)

Afternoon snack (between 3:00 and 6:00)
Half cup of cashews, rinsed to remove the salt

Diner (after 6:00, before 8:00)
Eggs (two with yoke, three no yoke)
Rice (one cup)
Frozen meal (the same kind every day)
Chicken (ground up in the blender)
Spinach

Evening snack (around 8:00):
One spoon of sour cream

This has been going on for about half a year now - no variation whatsoever. If anything changes, MW becomes excessively worried that she won't be able to sleep. Can you imaging eating the exact same thing every day for six months? Man, she won't even drink anything but water! On the one hand, that discipline is incredible; on the other, having to deal with this on a daily basis is maddening not to mention ridiculously inconvenient.

For example, dropping her lunch on Saturday created a crises. MW couldn't make a substitution so she had to wait until she came home to eat. Then, almost as soon as she finished lunch, she had to start eating diner. Would that much food eaten so late in the day cause her to loose sleep?

Maddening.

Also, as I've mentioned before, the only way we can go anywhere is to make short trips so we're back in time for whatever meals needs to be eaten, or to pack the food and take it along. And, no mistake, it is a lot of food to prepare and pack.

Inconvenient.

Sunday she bumped her head; Saturday was the dropped food; Friday we were still worried about burping.... Still, through all this, the sleep pattern has been fairly consistent. MW will go down around ten at night, wake up at midnight to ask how long she'd slept, then stay down until seven or so in the morning. The only addition to this routine is she's started talking in her sleep now, usually around 3 in the morning. Boring, work related stuff; but spoken loud enough to wake me up.

I'm tired. All the time.

And, of course, she continuously drops things, spills things.... and frequently chokes on foods and liquids. Not good.

It's more difficult to gauge the dementia. After watching the trailer for the Exodus movie, MW asked if Jesus was a real person.

Um. Yes.

And she had a follow up question: So the bible is true?

How... how do you even answer that?

I explained that Jesus was real, but only Christians believe he was born of virgin, son of god, resurrected, all that.

Oh, MW said, I believe he was resurrected.

Like, 60 seconds ago you didn't even know if he was a real person, I said. How can you believe in the resurrection?

Well, she explained, I know god is about faith. I thought Jesus was the same thing. Faith based. I've always had faith that he was resurrected.

You tell me: dementia or transcendent insight?

If this seems glib to the point of cruelty - making fun of the handicapped, Wayne? Big man - well maybe so. I guess I have a problem separating the disease from the person. I've been the disease's caretaker so long now, I have a hard time seeing the person that was MW in there at all anymore. And I don't have much respect for that fucking disease.

***

I've stopped drinking. Yeah, again. Blame it on October this time, and the worse Halloween ever. I was part of an intense trial during that month and couldn't drink because I was working too much. Then, when it was over, I tried to start drinking again but it made me very sick. So sick, the next day I couldn't even face the bottles. I poured it all down the drain.

Don't applaud. Throwing it away was weakness; not strength. I should have manned up and taken the medicine. Now, without my alcohol crutch, I'm a pathetic, hobbling mess. The long hours at work have left my back stiff and my legs wobbly. My shoulders ache and I walk hunched over. I'm morbidly depressed and can't sleep at night. I've put on weight....

I miss the elation and confidence I got from the bottle. Walking around drunk, man, I was bulletproof. There was a swagger with my stagger. Delusional? Hell, yes. I'm sure I was just as much an ass-clown then as I am now. Probably more so. Still, I ache for the escape drinking provided. Oh, to have those weird vodka nightmares back again! At least that would mean I'd be sleeping.

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?

2014.03.27

Nights are becoming extremely difficult. A pattern has emerged: at least every third night, MW will not sleep due to some anxiety. Naturally, when MW is not sleeping; I’m not sleeping.

And right now I am so goddamned exhausted.

Work is still very busy, and then I’m cooking/cleaning for MW every night until 8 or 9, then she demands I sit with her while she watches TV for a couple of hours. This is our “together” time. And then if it is one of her bad nights, I’m constantly on the move fetching things or wide awake listening to her cry. So come Thursday, I’m pretty much walking dead.

How long can this go on?

Juxtaposed against my fatigue, MW has done well with the temporary full time hours at her new job. She likes being around people, and she loves the fact that she’s working again. I truly thought she’d have found a reason to quit by now, but she’s still going. Tomorrow will mark two full weeks.

Good for her.

And, if she can maintain, good for me too. I desperately need some time alone, if for no other reason than just to sleep. My luck: she’ll make it through the training but when it comes time to start working weekends; MW will quit.

2014.03.28

MW asks me to hold her hand at night as she falls asleep. Last night the twitching, spasms and clutching became so pronounced, I almost asked if she was doing it on purpose.

That would have initiated a grand conversation.

Still, for all my worry and concern, MW is basically functioning at the same level she was when I started this journal. In some ways, even better, in that she’s kept a job for two weeks – two whole weeks! – now. But it is these little terrors – the twitching, the slurred speech, the carelessness and strange conversations – which makes every single one of my days a suspenseful nightmare. What is going to happen today? Will it be too big to ignore or equivocate (“Of course you’re not sick. Everybody occasionally misses their mouth with the spoon.”)?

Last night also saw a return of the obsessive paranoia over health. She has a chipped tooth and is certain that the remainder of said tooth will break off while she sleeps and choke her to death. So she kept asking me over and over again if that will happen. How many times can you say “No, dear. You can’t choke to death on a chipped tooth” before you start going a little crazy yourself? I do my best, but I need a crutch. 

Oh, and also, today my brother sent me an email with a link to an article about a possible cure for HD. Odd in that this was the first time he’d brought the issue up, even though I had expressed my concern over the matter with him a very long time ago. Perhaps he has noticed a change in MW? I would be interested to know why he sent it, but instead I made a joke of my reply. I appreciate my brother and know he means well, but all he can offer is sympathy. That’s all anyone can offer.

I don’t need sympathy. I need a solution to a problem that has none.

2014.03.20

You look for one day – just one – where no symptoms of the disease are manifest. Of course you can’t help but notice the speech, the spastic movements, and the bizarre conversations, but you look for that one day where the disease doesn’t make things “bad”.

Yesterday was close. The only “bad” thing that happened was MW got a speeding ticket coming home from work (day three and counting!). You certainly can’t blame a speeding ticket on HD, so I was willing to call the day a success, but the fallout from the ticket – the confusion and paranoia expressed by MW – dulled the shine.

Plus, it raises the issue of how much longer will it be safe for MW to drive?

On a related topic, my foot – the one I fucked up when I got drunk and fell down? – it still aches pretty bad. The swelling and discoloration have gone, but it gets stiff as a brick when I sit for a while. Perhaps I did break a bone in there somewhere. Oh well. The bottle givith, the bottle taketh away.

2014.03.21

Another sleepless night. This time it was acne, of all things. MW started obsessing about a pimple on her forehead. Two in the morning, waking me up, asking me how she can fall asleep when all she can think about is the pimple?

Shit, I don’t know. Pop the fucker?

Funny now, not so much when it is happening. It isn’t like a gentle whisper wake-up from MW, rather she cries loudly and then wants to change the sleeping arrangements. Last night I was able to talk her out of sleeping in the closet, but it wasn’t easy. She compromised by moving bedzilla around so our heads were where our feet used to be and vice versa. I’m not sure why, but this seemed to work and MW eventually did doze off – that would have been around 4 in the morning. She slept; I stayed awake waiting for 6 a.m. so I can go to work and get some peace.

Speaking of work, if MW makes it through today, it will mark one week of full time employment for her. If she makes it through two more full time weeks of training, then she can start her part-time hours. And I’ll have my weekends back. I shouldn’t hold out hope but… I have so little left to look forward too.

2014.03.24

It was a weekend of mostly little terrors. When we got home Friday night, the dog had taken a shit in its kennel and that soaked up most of MW’s dementia – everything within a five mile radius of the shit had to be thrown away as ‘unclean’ and what couldn’t be thrown away had to be disinfected with extreme prejudice. This took all night, but wasn’t too bad.

Saturday I had to work (thank God!) so was able to get away for about five or six hours in the morning. Afterwards, came home; cooked, cleaned, ran some errands, and that was the day. A little terror happened in the afternoon when MW went to take her vitamins. One of the pills got away from her, as they often will, and she commented, “I sure do drop a lot of vitamins, don’t I?”

…

I waited for this to spark some sort of realization in MW, but, no, nothing. Crises averted.

That night, however, MW couldn’t sleep so I was in and out of bedzilla all night; fetching water, fixing blankets, moving this, getting that…. Another notch in the ‘sleepless’ column, but since it was the weekend, manageable.

And Sunday was uneventful.

Today starts week two of the three week full time training. So far so good.   

2014.02.14

A lot has happened since last I wrote. MW got her old job back and I think I broke a bone in my foot. Here’s how it all went down:

MW’s ex-boss called and told her there were some openings available were she still interested. Remember, when MW left work last September, it was because…. Well, I’m not exactly sure. Her head just wasn’t right. So the parting was amicable on both sides; they were sorry to see her go, and she wasn’t all “take this job and shove it”. So they agreed to keep in touch and, surprisingly, they did. Anyway, staying at home hasn’t put MW’s head “right” so she thinks going back to work may help get her mind off all the negative thoughts and worries. Who knows? She may be right. It seemed to work briefly when she started taking classes again. Of course it didn’t last long, nor do I expect it to last long if she does go back to work. Degenerative disease, yo.

I am of two minds about this situation: 1) MW working means I get my weekends back. This would be exceptional. 2) MW’s condition has, to my perception, deteriorated to the point where people could/might notice. So how long will she be able to function in a work environment before being confronted by someone who doesn’t have my flair for lying and equivocating?

Not that I have much choice. I tried in my oh-so-subtle way to suggest she might not want to go back to work, but was rebuked in that I wasn’t being supportive. Now I’m supportive. There’s a good chance it’ll mean MW is going to find out she has HD sooner, but I’m supportive.

And here’s what happened with my foot: I got drunk Saturday night and fell off bed-zilla. Recall that bed-zilla is two queen mattresses shoved together in our sitting room where we sleep to ensure MW doesn’t bonk her head against the wall. Plenty of room on bed-zilla to avoid most perils, except when trying to transverse her on foot. And, as I said, I was well in my cups at the time. I know I’m supposed to be off the booze, but the plan was to start on Monday, and I had one bottle of wine left, so I decided to empty that cupboard. Turns out the wine was absolutely awful, almost undrinkable, one of those $3 Merlots they sell at Whole Foods, so to make it palatable, I mixed it with a bottle of seltzer water and ice. Viola! Wine spritzer. Also awful, but easier to drink.

And drink I did. Then I tried to walk across bed-zilla. I wound up writhing in agony on the floor, my ankle swollen twice its size.

But I’m a caregiver. I can’t go down. I walked on the goddamned thing all day Sunday, all day Monday, came home, took my sock off and not only was it swollen, it had a streak of purple-black that runs from one side of my heel to the other. What could cause that? I’m thinking a broken bone somewhere in there. Oh well. I can hobble on it good enough. And there’s no way I’m going to a doctor, so hopefully it’ll just set itself.

And now another fun filled weekend looms. Worse still – on Sunday I have to tell MW about the trial in Austin and how I’ll be away a couple of nights. All in all, not going to be a good Valentine’s weekend..

2014.02.06

Quite a few self-indulgent, pitiable posts recently. This plateau we’ve descended to isn’t working out very well – between MW’s incessant complaints and indecisions, I’m averaging maybe four hours sleep a night. And I haven’t implemented my mental escape plan yet – I’m waiting for warmer weather which is not cooperating, so I’m feeling more frayed around the edges than usual.

Still, looking at it objectively with no exaggeration of scale, I can honestly say that I have cause to complain because my situation is far worse than anything else anybody has ever gone through in the history of the world. Ever.

Maybe not, but in terms of shear shittyness, my situation has to be in the top 5%. First of all, HD is an exotic disease. From a 2005 study: only 30,000 people nationwide have it; 200,000 are at risk. That’s fucking rare. Then come at me with cancer, Parkinson’s, Alzheimer’s, or any other prosaic ailment and I’ll slap you right down with how much worse HD is. There is no cure, not even any hope for a cure, and its symptoms are absolutely execrable in comparison with the duration and infirmity of those diseases. I suppose one could make the argument that the individual suffering from HD doesn’t necessarily feel pain, like cancer; however, their goddamn brain is literally rusting away over many years, even decades. It is possible to survive cancer, but if you don’t, well, at least it runs its course pretty quick. I call trump.

So I’m in rare company by rights, couple that with my forced isolation and I’m basically a Man Apart. All of the pieces I’ve read concerning HD victims or their caretakers have a common thread: companionship. Mostly family, sometimes friends, all their stories center on the importance of having the support of knowing, helpful companions.

We have a sick old dog. And that’s it.

As I’ve mentioned, MW’s family is useless. Shockingly so. They have no patience or tolerance and cannot be trusted to handle this situation with anything close to compassion. True story: early on when it became apparent MW and I weren’t planning on having children, my father-in-law took me aside and told me that if the reason we weren’t reproducing was because the fear of HD (it was), we had nothing to worry about. See, he’d read somewhere that you could test the fetus for the disease. If the test came back positive, just abort. Well now. What can you say about a motherfucker like that?

What about my family? I suppose I could confide in them, but this isn’t their burden. And to be perfectly honest they wouldn’t be much help anyway. Except my brother. I could confide in my brother and he – and his family – would be compassionate and caring. I know this. But as I said, I don’t want to weigh him down with my problems. He’s already done enough – too much – for me anyway. Then there’s my sister. She’s been alienated by MW’s behavior, righteously so, but I’m sure if I called her up and explained things she’d come around. However, there wouldn’t be much point to it. She lives far away and is super busy with her own life. Plus she recently became involved in some charismatic church so I’m sure I’d get a lot of “we’ll pray for you”s out of the deal. Yeah. You do that.

I can’t trust my mother. She’d confront MW about getting treatment. Probably start arguing with her again. Do not need that. Finally my dad would be like my sister to the n^th power. He lives far away with his own busy life.

Family is out, then, which leaves friends. Alas, the nature of the beast is irrational, indecisive behavior so the only friends we have left are the most casual of casual. How would they react to the following: “MW has HD so could you call her up to hang out sometime; you know, just to sit and be with her for a while because she really likes talking to people? Be aware that she’ll probably cancel the event because she has a hard time leaving the house, but just making the offer would mean a lot. And if she does show up, please don’t talk about anything significant. Keep the conversation casual because she gets anxious when people discuss problems and stuff.” Who knows? Maybe some would, most would not, however, and those that did certainly wouldn’t do it more than a few times.

At the end of the day it is just me. And the dog. And neither of us are doing all that great right now.

2014.02.05

Yesterday there was a hostage situation in my neighborhood. Armed SWAT cops swarming our streets, hiding in our backyard. Even a tank cruising around.

MW was in heaven! She ran to all the neighbors, sat and talked with everyone, got out of the house to gossip and chit chat with strangers. She really loves and lives for that sort of thing. In the end, it was nothing. Some teenager hoax. But the activity must have been good for MW because she slept well last night. We should have these hostage hoaxes more often.

Reviewing yesterday’s blog entry, however, and I feel stupid. Ashamed, really. Railing against God is so demeaning. Makes one seem childish and naïve. It just goes to show how abysmal my situation is and how desperately I need help. 

Well. There is none coming. So I had better start getting my head right (wrong) so I can deal with this reality through avoidance. Liquor, yes. Soon. It's just that I’m still unnerved by the functional oblivion I experienced last time I drank.

I’m grinding my teeth as I write. For fuck’s sake I never wanted this! I had dreams, plans, maybe even talent. Now the most likely outcome for my life is alcoholism coupled with health problems. How often have I judged alcoholics as pathetic? You drink because you don’t like your job? Fucking quit, you sod! You’re soused because of relationship problems? Well there’s plenty more fish in the sea, babe. Maybe you just booze because you’ve had a rough childhood and can’t handle life. Oh, grow the fuck up.

Your wife’s brain is slowing killing her in the most insidious and grotesque way conceivable and the process will likely take decades but you can’t do anything about it because that would force your wife to accept the fact that her life is basically over and, statistically speaking, many in her situation just off themselves? Yup. Next round’s on me.

2014.02.04

I’m a problem solver. That’s my job. I’m the one they call upon at the office when things need to get done quickly and correctly. I take pride in the fact that I can find, effect, or fake a solution to just about any problem thrown my way.

Which is why this situation with MW and HD is so goddamned agonizing. I’ve done the research, I’ve approached it from every angle, I’ve gone over all possible outcomes in my mind, and I keep coming up fucked. It’s pretty bad when “murder/suicide” finds a place on the short list of feasible solutions.

I’ve been reading blogs by and about other people suffering from HD. Pathetic, I know. Misery loves company and all that. I blanch at the ones where thy fall back on religion as both an explanation and a comfort.

How do they do that?

I would like to know because the specter of alcoholism looms in my immediate future and if there was a way to subvert it I would. With God?

One of MW’s cousins – one whose own mother is now showing signs of the disease – grew up in a fabulously religious house. Church, praise-and-worship, the whole shebang. You know the type; always praying those bullshit logorrhea prayers where every other word is “father”.

E.G.: “Thank you our father for all you’ve given us father and bless everybody father all our family father and friends and even our pets father whom you’ve given us as comfort father in our lives father and our family overseas lord bless them father even though they aren’t in our zip code father and for those who couldn’t be here father because they have the flu father….”

Okay, I was raised Catholic: “Bless us Lord” and get on with business.

Anyway, this cousin has fallen from the church. A big surprise given how important the church was throughout his childhood. When asked why, he replied that he couldn’t believe in a God that would allow for something like HD.

Right. Except as a Catholic, I can believe in such a God. A fucking cunt God who judges and condemns. Baptists with their “but he gave his only son for us” jive. Yeah, okay. But don’t you think it pisses him off he had to in the first place?

Hey, there you go. At least I’m not an atheist.

2014.01.21

Bad stretch of time. MLK day - another long weekend with MW and she was in rare form. Saturday morning was brutal. MW is clearly experiencing the chorea now, early stages, but still unavoidable. Saturday she recognized this and spent the morning grilling me on why she doesn’t have HD. Once again, I explained that none of the symptoms she described are indications of the disease (yeah, right) but this time she wasn’t buying it. She asked - if I did suspect it was HD, surely I would do something? Surely I wouldn’t just lie about it? Well. Fuck. Of course it is HD and what choice do I have but to lie? Once again, as she was going about the business of devastating me, she stated that she would never take medication for the disease. So what can I do? What the fuck can I do?

Turns out I can drink. It is becoming a problem. This past weekend MW made us drive up to Austin for a couple of days. That’s two days I wasn’t able to sneak drinks. I was feeling terrible and, upon reaching home, the first thing I did was drink.

I stay late at work now just to drink. I’ve developed that alcoholic’s savant where I can judge how much booze I’ll need to get me through the day and plan accordingly. I’ve added Altoids to the list of must-haves for my pocket gear.

I’m a little drunk right now.

Jesus. I never wanted to be this.

But the drinking levels the playing field. Sometimes I wonder if HD is really just like feeling drunk all the time. If so, MW is a sad, sad drunk. Could be worse. She could be an angry drunk.

You think I’m a coward for not confronting MW with what I know? Yes, yes, again yes. But I know it will have to happen anyway. So what’s the problem with waiting? Giving her as many days as I can before even she has to face the facts? Look, you ask if the rolls were reverse, if I had the disease, what would I do?

With a snootful, I can say 100% certain positive I would kill myself. Immediately. No question. Come back when I’m sober-ish and I’ll say the same. I’ve seen what this disease does. I would never allow it to happen to me. Or, rather, because I have no idea what it actually feels like (there doesn’t appear to be any pain) I would never ever allow myself to become such a burden on others.

But if MW asked me for help committing suicide? What would I do?

Oh God Jesus. I need another drink.

2014.01.09

Another cancer scare last night. MW said when she squatted down she felt as if she was “bumping into something” so she kept doing deep-knee bends and asking “Huh? huh?”

I didn’t know how to respond. I wasn’t even sure she thought it was cancer until she said, “Do you think it is ‘C’?” Apparently the act of squatting made her feel as if there was a lump somewhere in her stomach.

This kept her awake and worrying until around midnight. She tried to sleep in the closet, but the blankets were in disarray so she returned to Bed-zilla.

Is the gallows humor out of place?

I married at 20, and knew at the time that MW was at risk for HD. Of course being young and in love = fucking stupid and I was confident that 1) she wouldn’t get it and 2) if she did, we could manage. After all, Woody Guthrie could play the guitar.

We weren’t lucky enough to roll a 1, so that leaves 2. But, goddamnit, MW will not do anything to acknowledge the possibility of having, nor managing the recognizable mental and physical symptoms of the disease. So where does that leave me?

In the gallows.

And there is a lot to laugh at around here, if you’re of the right mind. For example, MW is gorgeous. Strikingly attractive. But her irrational concerns over cleanliness and disease have made her untouchable this past decade or so. And even before that, intimacy was a rare occasion - once every couple of years kind of thing. Not that I tried much to persuade her otherwise. Rather disgusting behavior, pressuring an HD victim for sex. So I live with a beautiful woman I cannot touch. And I listen to a lot of surf music.

Funny, no?

2014.01.07

Finishing where I left off: I had offered to buy tickets that would get us to NY just in time - and I mean just - but, again, she wouldn’t make the commitment. So we drove to Dallas instead. This is Friday, the 3rd. We get to Dallas, drop the dog off, and check into a Hotel where MW eats the food she’d prepared in Houston.

MW has created a very strict, very inconvenient diet that she wholeheartedly believes helps her sleep. It is a lot of food and it has to be eaten on schedule every day. She cannot vary these meals. Travel is, therefore, difficult. Nevertheless, we made it to Dallas and ate appropriately.

Surprisingly, she sleeps very well that night. I get very little sleep - hotel noise and lights plus her movement/snoring keep me up.

The next morning she arranged to visit friends. These friends are casual acquaintances, but MW is head-over-heels in love with the husband. Not sexual, but she places the burden of brotherhood on the poor guy and he - being a decent chap - does not refute.

The plan is to have breakfast with them, then drive back to Houston in time so she can eat her lunch. After breakfast, they ask what plans we have - MW lies and says she’s visiting another friend that evening. They invite us to spend the night at their house.

We go to Whole Foods, buy MW’s lunch (Fish, Eggs, Chicken, Spinach plus some frozen meals) and she goes to their house to cook.

They display remarkable patience as she cooks both lunch and dinner at their house. This takes pretty much all day.

I leave with the husband to get our food. When we return, MW has told them that we are going to spend the night with the other friend we are supposed to be visiting. A lie and a confusing one. My suggestion had been to leave for a couple hours, pretend to visit the other friend, then return to spend the night with these lovely people. She changed that plan. Reason? The guest bedroom was at the top of a winding staircase and she was afraid she would become disoriented and tumble down the stairs.

After diner we have to leave. MW hedges and tells them she may want to come back and spend the night at their house.

Back-and-forth.

We spend a few hours debating over the best course of action (no debate, really, just me telling her “whatever you want”)

She cannot decide. Eventually it becomes too late and we check into another hotel for the night.

Note the trend: MW has lost the ability to make decisions. Classic HD behavior and, because of the unfortunate history of our relationship (she has always made all decisions and any of my suggestions are immediately discounted because… well. Because I’m me.) crippling our lives. We can make no plans.

She does sleep well that night (Saturday). We drive home in the morning.

The next night (Sunday) our sleeping arrangement is once again revised. Now both queen sized mattresses have been moved to the sitting room turning the small space into one huge bed. She sleeps fairly well on bed-zilla.

Monday I desperately want to go back to work (I haven’t had a moment to myself in five days!) but she looks like she’ll have a breakdown if I force the issue so I agree to take one more day off.

Driving around in the morning, she notices one of her toenails has turned blue. She panics. I have no idea what she thinks would cause a blue toenail nor, when she forces me to look at it, can I tell it is “blue”. It may be a slightly lighter shade of pink than the other toenails - but it isn’t blue. Of course my reassurances don’t mean anything so we drive to one of her friend’s house for him to look at it. He used to be a nurse. He can’t tell her anything but to go see a doctor.

Shortly after this visit, the toenail returns to a normal shade. Crisis averted. Only now she is wondering if her behavior is indicative of HD.

No, I say.

I’m reminded of a Twilight Zone episode - or maybe it was a comic in an old horror magazine - where a wife is convinced her husband is a vampire because of his odd behavior. As it turns out, she is the vampire and the husband is killing victims to keep her fed while convincing her she is drinking juice, not blood. He loves her so much, you see, he can’t bring himself to let her know she’s the one who is undead.

I feel you, man.

The remainder of the day is uneventful. I’m relieved to find that enrolling her for typing and another BS class at the community college is only $400. Money, now, is not a problem, but she is not working and if she keeps incurring these expenses, it may soon become one.

She sleeps well Monday night too.

Which brings us up to date. I’m at work - finally! - and very happy to be so.