Monday, August 27, 2018

2018.08.27

What am I missing?

I've been scrapping myself raw down here at the bottom of the barrel; throwing myself against the brick walls, collapsing hard upon the concrete floor. I've not an inch of smooth skin left and everything is tinted the color of my blood.

For what? Why do I keep going? The joy of hearing death laugh at me?

No. I'm missing something.

I have to be.

But what?

***

Just because I can't see the solution doesn't mean there isn't one.

But see? That right there has become a huge problem: I'm getting worse. Stupider. I never used to write sentences so awkward and poorly structured. I've forgotten how to be myself; how to think like I should think, act like I should act.

So if there is an answer, I fear it's beyond my ken of understanding and outside my capabilities.

Funny. MW has Huntington's Disease, but I'm the one thinking about walking into the sea. She's doing fine, at least as far as she knows, she's doing great! Just the other day she was bragging about how she's the best she's ever been, mentally, because of her high protein diet.

I guess it doesn't register that she hasn't been able to work for a year, and she must not see the dozens of sheets of typing paper containing "reminders" which she's taped up all over the walls. Of course the car's been in the shop for three weeks since she smashed it into a pole, and she still has crap piled up all around the garage door to prevent her from going over the threshold too fast.

But she's eating four fillets of salmon a week. She's ready to take on the world! As long as it doesn't contain a sidewalk with too many sections. You can trip over those section breaks, which is why we don't walk at the park anymore.

***

The house rules set forth by MW are extensive and exhausting. Every moment of my time at home is set to tasks. It's been this way for years.

But lately I've let things slide. Simple things like plugging all the drains in the house to prevent tree-roaches from crawling out of the pipes, or leaving the kitchen sponge in the sink instead of the drying rack. Seems like every day I forget one or more of these rules.

And when I do? Apocalypse. Sleeplessness. MW will wake me at 1,2,3 in the morning to yell at me that I've left a sink un-plugged.

Stupid stupid stupid me.

***

The other day, I tried walking with my head up; shoulders back. You know, on a lark.

Didn't last. Within five steps my back hunched and eyes down-turned. Everything hurt. I shuffled along hurriedly to my office where I could pop some Advil.

I'm broke down.

***

But am I missing something?

Monday, August 20, 2018

2018.08.20

Head-check time:

Suicide. I tend to beat around the bush about it, but there it is.

The solution.

The only solution?

What this head-check is all about.

***

First, the weekend. As always, hellish. The high point was a refreshing blast of self-awareness as to the numbness that allows me to continue walking upright instead of curling into a ball, ripping out my guts.

It can't hurt me anymore. I'm beyond pain.

Jesus. Did I just write that? *sigh*

Details, if you need them, though they're not much different from any (every) other weekend:

I get one chance at the grocery store. MW drives, because she doesn't trust me, but she won't go into the store because she doesn't want people looking at her. Ergo, I shop; she waits.

Ah, but this is summer time in Houston. She won't wait long. I'd better hurry my ass up! And if I forget or don't buy enough of something? Capitol T trouble.

So before I leave the car, I ask MW a few times if she needs anything special. She'll say no; then I'll start listing off the stuff she has wanted in the past, and might want again. Occasionally I'll hit on a winner, but when she's in a mood, this type of OCD grates her nerves and she'll snap at me to "go and hurry!"

Just so this weekend. I'd asked about some things, she crossly said she didn't want them, and I skedaddled.

That was Saturday. Sunday she wanted the items I'd asked about; but I hadn't bought them.

Yup. An apocalypse. By the time she'd finished flaying all the flesh from my body, hours had passed and the air around my head had turned India-ink black.

And all I could think about was the comfort of the grave.

***

Nothing new, though, this is how I spend most of my time at home. Wishing I were dead.

It has gotten to the point where I feel, well, dead already. MW screaming at me, berating me, lashing out at me - do I flinch when her clawed hand rakes the air at my cheek? No. Do I imagine that same hand closed around a pair of scissors or a knife?

Sure. Be better. Bet a LOT better.

And I wouldn't flinch.

***

What's holding me back? Why haven't I killed myself yet? Where's my head at?

***

When I became certain MW had Huntington's Disease, I foolishly assumed there would be some sort of help for us. Friends, family, doctors, medicine; something to make it manageable.

Nope.

We're alone and there is nothing we can do to manage this. It won't get better until one of us dies.

That's it. Carved in stone. One of us has to die for things to improve.

And every day I chose not to kill myself is another day where, in the back of my mind, I know I'm counting on MW dying first.

Five years of this, and I loathe myself. Obviously it's been too late for MW for a long time now. Since she was born, actually. Recently, though, I've come to realize it's too late for me as well.

If MW does die before me, I would not be able to rebuild a normal life. I don't know how to be around people anymore. There are days where I go without speaking more than perfunctory greetings to co-workers. My voice, when I use it, is thin and strange to me. So many years of being torn down for every utterance have left me uncertain and afraid.

I don't trust myself. I don't trust anybody. Words are grenades; even facial expressions can invite shrapnel. I can sit at a computer and work, but that's all. If MW dies, that will be what's left of me. A mouse and a keyboard and a paycheck.

Why bother?

***

Here's where it gets maybe a little complicated:

1) MW can't take care of herself.
2) I'm the only one around.

So. I need to be around to take care of her, yes?

Yes.

EXCEPT! What if I'm doing a terrible job? What if, in fact, I'm putting her at great risk by shielding her from reality.

Case in point: Should she be driving? Probably not. I've tried my best to keep her from behind the wheel, but I've fucked it all up and she wants to drive exclusively.

That's the big one; but there are myriad little things I do that, out of context, seem downright cruel. Or, hell, maybe even in context. I've no idea. Take for example her job-hunt. I fill out all her applications and take all her assessment tests so she gets interviews which she bombs (no help for it - she sounds crazy over the phone and in person? Best case they think she's drunk).

I tell her it's okay. I tell her to keep trying. I tell her they're the one's who are crazy.

I keep her going.

Just the other day she got in her mind to ask some former supervisors for references. She composed an email and sent it to a vice president of Chase Bank.

When I got home, she showed me the email.

It was nuts. Indecipherable. So confusing, in fact, I could imagine the recipient being slightly frightened.

I hedged and said it could've been clearer, then wrote another version for her and sent it off; but I did tell her that he probably already moved it to spam so she shouldn't expect a reply.

She's humiliating herself and I let it happen. I enable it. Hell, I encourage it. If she's busy harassing some company's HR department, that's less time she's spending tearing me down.

I'm not at all certain this is the best way to handle somebody with Huntington's Disease. Even if they've been adamant about not wanting to know; and they're not likely to take any medications - even still.

I'm probably balling this all up.

***

So where am I at? Do I start making definitive plans today or do I wait?

How many more days can I look at myself in the shaving mirror and think, "Maybe MW will die today. Wouldn't that be something?"

That's no way to live.

Friday, August 17, 2018

2018.08.17

One step forward, two steps back.

Two gigantic, leaping steps. Flying, cartwheeling steps. Heels-over-the-cliff steps.

I should have known. When the miraculous occurs and something that is actually helpful happens, it won't last or will backfire.

Just so the event that led MW to agree to let me drive from now on. That's over and I'm once again relegated to riding white-knuckled in the passenger seat, but it's my own fault. It makes me ill when I think about it; just how fucking pointless and cruel and miserable and hopeless and sad and dangerous and pathetic and and and.

Here's what happened:

I'm driving now! And doing a great job of it, if I may say so. There's a reason for my perfect driving record - I'm obsessively careful and defensive on the road. Always wear my seat-belt and stop at every sign even if there are no other cars on the road. Yeah, I'm that person. But heck, behind the wheel of a car is the only place where I have certain control over our safety. We may be fucked, but we're not dying in a car. Not when I'm driving.

You see what's coming, right? I'm cruising the speed-limit on a 55mph freeway when lady in a BMW, who had been stopped off the side of the road, decides she's waited long enough and pulls right into my lane and I have to stand on the brakes to avoid having a BAD collision. Tires screaming, smoke billowing, everything loose in the car flying forward, smacking against the dash and the windshield.

And I transform into a creature made of pure rage.

Five years of being Huntington's Disease's simpering bitch. Five years of no peace, no rest, constant humiliation and horror. Five years of sleep-deprivation and sickness. Five years of crushing depression.

And this CUNT tries to wreck us in her fucking BMW?

Oh. Oh no. No, I couldn't....

And when I had finished verbally unloading all my hatred and frustration on the silly twat who had long since puttered away (badly cutting of other motorists, I noticed, as she continued blissfully towards the far end of a five lane highway to turn into a fast-food joint) MW was sobbing, begging me to calm down.

For you see, I had well and truly lost my shit.

Welp. That's the end of that. I am no longer allowed to drive. We have to do the shuffle where I'll pull out of our driveway to avoid hitting cars, then stop at a strip-mall to let her take the wheel. She'll drive until we get close to our destination where she'll pull into an easy lot to let me do the parking if it's a garage.

Stupid and dangerous. And I'm to blame. If only I'd been able to control myself.

***

More? MW saw an internet article about an ex-school teacher who now earns $100,000+ delivering groceries.

Again, you see what's coming.

But I don't want her driving around that much, so I have to think fast:

"You can't do that," I say. "They'll make you deliver everywhere. Even rape houses."
"?"
"You know, some bad neighborhood or trailer park or something."
"Those people don't have their groceries delivered! They can't afford it."
"Sure they can. They get subsidized for it. And the grocery stores don't charge, so it's free, except if they want to tip. Which they don't have to. That $100,000 a year ex-teacher probably works a really expensive, high end neighborhood. Not like it is around here."

So far that argument has won the day. Last thing MW wants is to have any part of a rape-house.

Tuesday, August 7, 2018

2018.08.07

Sunday, August 5th MW scrapped the right side of the car all to hell against a concrete post in the Galleria's parking garage. She misjudged the spacing and just kept going.

$5,000+ worth of damage.

Even before then, MW was all over the road - cruising the shoulders; never between the lines. I'm riding shotgun, knuckles white from gripping the armrests, afraid to mention her erratic behavior because past experience dictates that'll get me screamed at.

On the bright side, nobody got hurt and she kinda agreed to let me drive from now on. She readily understood that she shouldn't go into any more parking garages, but her plan was to drive to empty lots close to our destination and then let me take the driver's seat for parking in a garage when necessary.

Not very efficient, but better than 1) letting fear take over and 2) letting me drive because I'm a terrible driver. Either too fast or too slow. Never just right. Don't even talk about how I've never had an accident or any kind of speeding ticket or moving violation - not since I was a teenager - because that doesn't mean anything. I'm still a horrible driver.

Here's how I countered those arguments:

1) (Borrowed from Nero Wolfe) We can avoid folly without backing into fear. MW shouldn't be afraid to drive, but when she has a passenger (me) she becomes distracted by conversation. In reality, she talks incessantly and likes to look at the person she's addressing. This is problematic when behind the wheel as her eyes are rarely on the road.

2) Give me a chance to prove I'm such a bad driver. After all, within the last three years, MW has had one terrible accident and countless bumps and scrapes. Both cars look like demolition derby rejects. So, yeah, maybe I'm always too fast or too slow or too stupid to drive; so why not prove it? Let me get into some accidents for a change.

Finally! Logic MW can get behind.

So now I'm driving. At least on the weekends. During the week when I'm not at home is another story; one which will likely not have a happy ending.

***

Last month MW had two doors replaced. The thresholds of the replacements are higher than what had been there. Thus, MW lost all semblance of control over tripping concerns. We drove to Wal-Mart at midnight to buy reflective tape to stick around the door as a warning. The entire door and surroundings are covered by signs; buckets and broom-pans are set around the entry to prevent anyone from moving too fast over the terrifying thresholds.

Typical behavior. Well, maybe a tick or two above typical. MW just could not reconcile having a half-inch threshold to navigate - she wailed and cried as if she had become a prisoner in her own home because there was no safe way to step through the new doors.

What was notable, however, was the power of deniability MW displayed when confronted by reality.

She'd been going on for hours about how dangerous the doors were and trying to figure out a way to make them safe. Then, after rejecting all my suggestions (she almost agreed to having handicap ramps installed, but balked because you could fall off the ramps' edges), in a pique of frustration, I said it was something we might just have to learn to live with. After all, outside the house, there are plenty of thresholds; many even taller than ours. Uneven sidewalks, curbs, cracks; nothing is 100% safe. The only way to guarantee you won't trip and fall over something is to ride around in a wheelchair, I said. Did you want to buy a wheelchair? I asked.

MW looked at me for a moment. Her brow furrowed briefly, as if recognizing an unpleasant truth about her future, then she went on rallying against thresholds; totally ignoring everything I'd said.

Denial. Such a powerful thing.

***

Comic relief time:

The pendulum had swung back to "drink!" and I'd decided to buy wine during lunch at work. Eager to get to the grocery store, I decided to hurry across the street NOT at the crosswalk. A diabolically hidden sprinkler connector in the scrub-land between sidewalk and street caught my foot as expertly as a Viet Cong tripwire. 

I went down. Hard. Right on the street. Had a car been coming, it would have crushed my torso.

My shin, knee and palms were wrecked - flayed flesh, bleeding, pants ruined.

Perfect. And it gets better.

I took myself to CVS for hydrogen peroxide, Neosporin and bandadges. On the way out, a bird shits on my shoulder.

But that's not all.

I know I have to hide the wounds from MW. She doesn't handle these things very well. So I start wearing long pants around the house with a flesh colored bandage on my hand. Fortunately, MW isn't very aware of her environment these days, so she doesn't notice that I'm wearing long flannel PJ bottoms when it's 100 degrees outside or that my palm is almost completely covered by a bandage.

And then MW steps on a piece of glass in the kitchen. Just a sliver; probably from something she broke, but it's enough to send her over.

I'm responsible for the glass being there. I must have carried it in from outside on the cuff of my long pants. She demands I take them off and put on shorts.

Oh goddamnit.

At least the leg had had some time to heal by then, so MW didn't completely lose her mind about it. Still, it all goes to show how wonderful life really is.