2015.09.30

Something new: MW has started noticing weight loss. Her clothes are looser, her face has slimmed. But her diet hasn't changed. So what's going on!?!? Diabetes? Thyroid.... CANCER?

All day all night, every day every night; MW has become obsessed with the idea that she is loosing weight because of some disease.

And she is. HD. But she can't know that so I lie.

I tell her it is because her metabolism has changed with age. Sure. As you... mature... your body goes through changes. It is common for people to experience weight loss as they approach their 50s. Happens all the time. Nothing to worry about.

Christ. How much longer can I keep this up?

Especially now that I have honest-and-for-true-no-kidding-this-time quit drinking. And this time it'll stick; because a couple of weeks ago I got blind drunk, passed out on the bathroom floor, and almost burned the house down with my lunch on the stove.

I'm in a strange place. I'm not overly concerned with my own health. And I'm not at all certain that I'm even being helpful in my roll as "care giver". Indeed, I can (and have) made very convincing arguments that my efforts to shield MW from Huntington's Disease are misguided, dangerous, detrimental, and cowardly.

She would be in a better place without me. It would be FORCED upon her.

So I pass out drunk cuddled against the toilette bowl, who cares? It's as good a way as any to pass the time, waiting for death. But I can't have the house burn down. I can't be that reckless.

***

My dad has reached the point where the doctors are talking "quality of life" issues with him. He can choose to stop treatment any day now. Knowing him, he will. Can't blame him but FUCK SHIT FUCK!!! How the fuck am I supposed to visit? Or go to a goddamned funeral? I can't leave MW, and I can't conceive travelling with her. It is difficult enough keeping her between the ditches within the confines of our house. MW on the road? Hell no.

Thanks a lot, dad, for dying young.

Well. HD does make monsters of us all.

2015.08.10

It has been six months and change, over half a year, since my last post. Long time, but then time has a different meaning when you're riding the HD train. Hey, can't this heap go any goddamned faster? I don't know how much more of this agonizing trip I can take! But then, I know what's at the end of the ride and... well... maybe ease up on shoveling that coal. Maybe I'm not quite ready after all.

Anyway, I'm back. See, what happened was, after I realized how this blog was just so much bullshit, I found a new outlet to manage my grief. I set up shop on a different corner of the internet and started blogging stupid cartoons and writing - acting like a kid again, pissing on the wall and doing jumping-jacks in the puddle. It was fun and provided a daily distraction.

Also, I was really, very, consistently drunk most of the time, so there was some joy in waking up the morning after and checking the stats to see how many people saw me staggering around the internet with my dick out the night before. Ha! I showed them a thing or two don't you think?

Well a month ago my sister called with the news that my dad has pancreatic cancer. He'll die soon.

My first reaction - the biggest knot of agony in my stomach - came from the realization that my wife CANNOT find out about this. I told my sister not to call my house; not to talk to my wife - also, tell mom, my brother, his wife, not to call the house.

My wife cannot know my dad has pancreatic cancer because I have no idea how she would handle the news.

Of course, my sister asked why and I had to tell her. Huntington's Disease. Hands off/keep away.

So now all my family - except dad - know my secret.

"Hi dad. Sorry about the big C, but hey, my wife has HD. TRUMP CARD!"

Sitting at my desk for a couple of hours, processing this, and I'm overwhelmed. I shut the door and just start crying. Of course, life being the pile of shit that it is, now is when everybody comes knocking, bringing projects. No really, I'll go days with nobody stopping by my office at all. As soon as I need privacy.... Hello. Well, God-bless Houston and it's 365 day a year allergy season. Not everyone was convinced, I'm sure, but nobody pressed so I'm still okay at the job.

Why the sobbing? I mean, besides the fact that I'll be burying my father within the year? Well, how am I going to see him before he dies? I can't tell my wife about the cancer - I can't leave her alone and she has a very hard time traveling. Fuck - I might not even be able to go to the funeral.

I'll have to email my dad goodbye.

***

Hey, remember when I said life was shit and you thought I was walling in self-pity? Being a bitch? Well, check this out: after I told everybody in my family to stay away from my wife and I, just leave us alone, because I'm trying very hard to convince her she doesn't have Huntington's Disease and I can't have any conversational slips or discussions about sickness and health. After all that, my dad calls the house to tell us the news himself. And, yes, my wife answered the phone.

There should be limits.

Surprisingly, my wife takes the news very well. True, she never really got to know my dad. Only met him a few times - but this is a woman who will start singing "La La La!" at the top of her voice to drown out the TV while she scrambles for the remote control to change the station from any pharmaceutical commercial even suggesting treatment for a disease.

Later, I come to understand that she doesn't know what pancreatic cancer means. She's talking about how my dad will be okay - how she's see where lots of people have beat cancer.... Yeah, she's probably thinking prostate.

I don't correct her.

***

There's a lot still up in the air. I still don't know if or how I'll get to see my dad before he dies. Or the funeral.

My dad was always so big. Big tall guy.
What will he look like when I see him, if I see him? 

2015.02.04

Yesterday was THE day. I was going to stop drinking. I hadn't slept well the night before - I never sleep well, but that night was particularly rough. Sick. And sick all morning well into the afternoon. So I came to the conclusion that it has to stop. I've got to figure out a better way to deal with this situation.

Then the phone rings.

MW calls in a panic; she needs me to close her yahoo email account quick because she just gave that address to a clerk at Nordstrom’s, but then the clerk said something about how Nordstrom’s carries a brand of perfume - but they don't carry that perfume - so MW is worried that the clerk is going to use her email address for some scam. Because she lied about the perfume. Can not be trusted.

Yeeeeaaaahhhh. No. I have to keep drinking.

Again, this journal doesn't do justice to the situ. All conversations with MW are confounding or confusing. Lately she's been embodying the spirit of Ralph Kramden with every waking moment dedicated to figuring out some sort of money-making scheme. Dog walking, candy store, hair-stylists.... Uber driver.

Fortunately I'm around to talk her down from these flights. Or is it? Might be best if she were allowed to chase some dreams now, before it is too late. The thing is; she can't do anything on her own. She can't even get the right groceries anymore. Hell, I'm making sure there are open cans of dog food before I leave the house in the morning. Oh, she'd manage to get one open if she needed to, but then I'd be cleaning up the mess when I came home. So if I wanted to see MW realize her lifelong dream of, say, starting a candy store, I'd have to quit my job to help make it happen.

No fucking way. I need this job. They’re the only friends I have.

***

MW has been sleeping well. Figures. Right when I've reached the point of constant nocturnal alcohol sickness, MW stops having those all-night dementia parties. No rest for the wicked.

She does still do that four in the morning shout-out. I'm already awake for it, so it doesn't jolt me as bad anymore. Last night was weird in that she kept going. Normally she'll just blurt out a few words, maybe a full sentence, but last night she carried on a conversation for a couple of minutes. Fun.

***

Speaking to the void now - I'm just about ready to give this up. It didn't take long for me to realize it wasn't going to be of any use, and though I've been telling myself it is helpful as an outlet - it isn't. It’s pathetic and embarrassing. I look at other Huntington’s disease blogs and they’re all about hope and family and advocacy…. I’ve no hope; no family. In my weaker moments I fantasize about what it must be like to belong to an advocacy group – in communication with people who understand what MW and I are going through; working to make it better. Shit yes, I’ll walk for donations! Give me one of those goddamned t-shirts – blue looks great on me. You know I’ve never been one to join groups or take up causes, but I think I could really get into HD advocacy. Christ, just to be of some use; some help.

If only….

Anyway, the thought of continuing these journal entries has become oppressive and depressing. Time to call it quits.

2015.01.30

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

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

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

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

Ha fucking ha.

***

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

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

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

Or maybe just buy a gun.

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

2015.01.28

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

You almost stop thinking about HD.

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

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

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

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

*** 

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

*** 

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

And that made me realize how much I miss writing.

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

2015.01.27

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

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

***

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

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

***

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

2015.01.25

The wheel keeps grinding.

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

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

We shall see.

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

***

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

Okay.

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

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

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

***

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

Ha. Famous last words.

***

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

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

Good for you.

Me? I have to stop surfing the internet.