2017.06.16

Temporary though it may be, I've been walking on air these past few days. It started when MW, during one of her protracted, rambling ruminations on life, expressed the desire to "never know" that she has HD. "I would be really depressed.... if I knew I had a terminal disease," she said; then, "All I hope is, if I do have it, God makes it so I never know."

There you go. I'm not a monster after all. In fact, I'm doing God's work.

And that motherfucker owes me big time for this.

***

Anyway, for now, I'm Saint Wayne - snugly tucked in my hair-shirt, lying to and deceiving MW for His great glory. Hallelujah! 

It can't last, of course, but then I've been saying that for years. But if it is going to end soon, one of these will likely be the reason:

1. Unemployment
2. Insomnia
3. Foot pain caused by walking "wrong"
4. Diet
5. Cockroaches

Not necessarily in that order. In terms of actual severity; cockroaches would probably be #1. 

MW absolutely looses her shit when she sees a tree roach. Even a dead one; if it's in the house, she's terrified. She won't enter the room until I've gone ahead to make sure it's clear. She can't sleep worried they'll come for her in the night. She had me go around and duct-tape every seal around the light fixtures and doors we don't use. She'll talk for hours, recalling every roach she'd ever seen it the house; where it was, what it was doing.... 

She's one tree-roach away from institutionalization.

***

Foot pain. MW likes to run around the house, chasing after the little dog. Whenever I hear them playing, it sounds like our floor is being stampede by a football team. It's just a matter of time before she falls or knocks into something with disastrous results. 

***

Unemployment, diet and insomnia are on-going concerns. Any of them could put her over. She's also been getting these pimples on her face - she blames them on her diet - and they upset her beyond reason.

***

Let's not forget erratic movements, in-coordination, and carelessness. She'll leave the stove top on more often than she turns it off these days and I cannot just hand her anything anymore. I have to grab her hand, place the item there, and make sure her fingers have closed around it before I let go. Oddly, she doesn't recognize these behaviors as "wrong". When I remind her that she left the stove on, or when she drops things, she just laughs it off. 

Everything else causes extreme anxiety, but the actual, undeniable symptoms don't even register.

Mysterious ways, I guess. Now that I'm a saint, I'd better get used to them.

2017.05.18

Social media buzz today is all about the Pope meeting with HD families. He told us that we are “not alone”.

Wrong. But thanks for trying, buddy.

***

The problem with social media is watching the videos. Seeing how everybody with the disease starts to act, sound, even look, the same. The same gait; the same arm movements. The same slurred, drunken speech. And worse, their faces. They all get that lopsided, twitching appearance. Wait for it and you’ll see the Sardonicus grin. Rictus, really. After that comes the deep frown: the furrowed brow over sunken eyes; revealing a terrible mixture of confusion and fear.

One roll; 30,000 actors. Each slightly different, but all of them commanded to act out the same characterizations. The part they’re playing? Slow death.

***

But I admit, watching the Pope interact with HD victims had an effect. It made me sad, but in a good way. No, trust me; I’m an expert on sadness and it is possible to be good-sad.

I was raised Catholic. He is the Pope. How can I not react to him acknowledging our struggle? Oh, I know it is meaningless and won’t change a thing. My options are still intolerable. Nevertheless… he is the Pope. And he went out and hugged people like MW.

Thanks, buddy.

***

Today, for the first time, I got proof that my sympathetic HD actions are working. MW called me at work to worry over a possible symptom she’d experienced last night. She explained it as having “heard a noise” while on the computer.

At first I didn’t understand; but that’s not uncommon. So I asked if the computer’s speakers were turned on?

She went on to explain that the noise came from her arm twitching uncontrollably.

Ah.

But then, as I was running through all the reasons why sudden, unexplained movements are definitely not symptoms of Huntington’s disease, she preempted me by stating; “I’ve seen your arms like that sometimes.”

Indeed she has. And not by accident. I will make random, twitching motions when I’m around her just to plant those seeds. Lo and behold – fruit!

So that strategy paid off. Good. Any little victory…. The downside, however (everything comes with a downside these days) is the anxiety and roiling guts I experience when I call the house and she doesn’t answer (accident? fire?) or if I hear sirens when she’s out alone (crash?)

2017.05.08

The conversation about "why does my arm/leg/head move like that?" has progressed from a once-in-a-while occurrence to a daily event.

I still answer it is normal behavior, everybody experiences it, happens to me all the time. We're growing older. And so far that's worked.

So far.

I'm going on my fourth year of this... madness. Four years of lying to MW while taking ridiculous, almost comical steps to ensure she doesn't discover the truth of her condition.

Four years ago I was certain the end was in sight. I knew it couldn't last. 1,400+ days later and here we are: Still dancing on the edge of the cliff.

But now....

MW can't sleep for the twitching. She wakes up every morning asking me why her body moves like that. I lie.

She spills food and drops things so frequently these days; it isn't even remarked upon anymore. I hear the crash and shout out "Got it!" before she calls for help. I've done a remarkable job keeping her away from family and friends, but the few she does speak to, I know, are confused by her behavior. I feel physically ill when I hear the phone ring because I'm worried about what will be said.

And she's maybe a week away from losing her job. They say it is a schedule change, but there is no way she can work full time and I think they know that. They're trying to get rid of MW without actually firing her. I can't blame them; but not having a place to go, even for just a few hours, will be very difficult for MW.

More time to sit around and feel her body twitch.

***

The warrior heart that beats for the struggle; lives for the fight. Will never surrender or submit. Finds strength in adversity; comfort in God.

That's not MW. She would rather die than even admit she has a problem.

Which leads to the question: where does this end? What will I be asked to do; what am I prepared to do?

***

Hopelessness. I've a newfound appreciation for the word and I think it may be overused. "This is hopeless", usually means the outcome will be less than ideal.

And that is not hopelessness.

I read the HD social media posts. Misery; company, etc. Recently someone posted an angry rant about the disease, one of the lines read "only God has the cure!" Naturally the comments were voluminous and almost uniformly offered "prayers".

Nope. Maybe, but nope. "Only God has the cure!" means the only cure is God taking you away. Translation: death. There's your cure. The only cure.

Now we're edging closer to the true meaning of hopelessness. Not that the outcome will be less than ideal, but there is no outcome at all. Just an end. The ultimate end. That's where this is going. And the journey towards that end is long and painful and intractable.

I spend every waking hour of every day feeding and cleaning up after MW, listening to her irrational and often hateful speech, and, most important, lying to her face; her once stunningly beautiful face that has started to contort and reform into the HD rictus. My reward for this will be to do the same tomorrow, but a little worse. Then a little worse the next day. Again and again.

Until one of us dies.

Hopelessness.

2017.04.10

Saturday was my birthday. 45 years old.

Think about that - anyway you look at it; my life is over half over. Take into consideration that my father died at 68, round that down, we're talking almost 80% done.

And if what they say about despair and lifespan is true, that ought to bump the needle up well into the 90s.

Will I even see 46?

Do I care?

***

MW is about to lose her job. It's a little complicated, but the up-shot is they are taking away her part-time status; forcing her to go full-time. I'm not sure if they're doing this to try to get rid of her because she acts weird, or if they really can't have any more part-time employees. Note that they did make an exception when they transitioned her into a new position - they allowed MW to keep her hours even when everybody else had to change schedules, and for years now she's been the only part-time employee in her group.

It gives them an easy out: MW's behavior around the office is odd; but she hasn't fucked up the job yet, so instead of firing her, just push her to 40 hours and wait.

She won't last a week.

For me, this means I'll no longer have four hours alone on Saturday to get shit done around the house. I won't be able to do laundry, clean the bathroom, or cook the hard-boiled eggs I eat everyday for lunch. My future has become smelly and hungry.

For MW, this has pushed her closer to hopeless depression and created more of those hot-anger spikes. Bouts of weeping followed by near-violent outbursts of rage. I have to gently talk her down from filing a lawsuit, then withstand the attack when she accuses me of being against her.

Her fear is being alone and lonely all day. I've suggested taking classes or volunteering somewhere - but this advice is ill-received.

And, as I stand there taking the ceaseless tirade of what a worthless, terrible, pathetic person I am, I nod my head and consider:

Alone and lonely. Yes. That's where we're going.

***

Take, for example, my birthday. The only people who acknowledged it were my brother (who sent an email) and a co-worker who saw it on the firm's calendar and poked his head in my office to wish me HB. Not even MW remembered - though I don't blame her. She's going through a lot.

And I'm not complaining - this is entirely by design. I can't trust family or friends not to say anything that might upset MW so I've pushed everybody away. I've worked very hard to establish alone and lonely. Once MW loses her job, that's another little triumph for my master plan.

Achieve total isolation; then wait around to die.

Perfect.

***

The frequency of MW commenting on uncontrollable movements is increasing. I assure her it's nothing; happens to everyone; especially as they age. I've even started twitching some of my own limbs at odd moments - hoping she'll notice and think it's normal.

There's one for the medical books - sympathetic HD.

***

One thing that's confusing/annoying me is MW's weight. Two years ago she was highly worried about weight loss. Now she's concerned that she's putting on the pounds. And she has gotten quite large around the middle. What the fuck?

I'm sure this has more to do with getting sober than sympathetic HD, but I've lost over 30 pounds since October. Again, I rather hoped MW would somehow think it is normal for certain people to get trim as they grow old. You'd be surprised at what I can get away with when it comes to lying. But now that's backfired on me and all I've got to show for it is a couple of crudely punched holes in my belt and one pissed off wife.

She yells at me for looking thinner while steaming with anger that she's gotten thick.

That ain't right.

2017.03.31

It's been day-by-day for so long, I've grown inured to the sense of dread. Life as I know it will be ending soon; replaced with something much worse. 

And so what? After three plus years of waking up anxious and going to sleep sick, I'm just ready for it to be over. 

That said; I am sinking low these days. The flood of irrational behavior has turned our house into a swamp and I don't have the inclination or strength to keep bailing. Two days ago I'm banned from going upstairs because MW almost tripped over the dog; yesterday I'm told we're no longer allowed to use the garage door opener because MW almost backed into the door. The HD wall paper is back with a vengeance - there isn't an inch of the bathroom wall or fireplace mantle not covered with taped-up "reminder" notes.

MW complains incessantly; she gets angry at everything and anything. I'm routinely and vehemently chastised for things I've no part in or control over.

Sleep is difficult. Night-time anxieties strike and MW is in and out of bed for hours setting the world right.

And, of course, she worries about her health.

I have the power to end it. All I need to do, next time she asks if I think her muscle spasm could be HD, is say yes.

Like that; it's over.

Christ, I've come close. Over these past few months? So close.

Why haven't I? Why am I still standing here, useless, bucket dangling from my fingers while the water rises past my nose?

***

I'm ill. Hatred for MW's family has poisoned my mind; turned my soul black. I've had recurring dreams where I'm drinking again - the sensation so real, I wake up nauseous and wobbly. Feeling evil.

I justify "reverse gas-lighting" MW, especially when it is her own behavior I'm trying to normalize, but lately she's noticed my weight loss. There's nothing "reverse" about me telling her she's mistaken and that I've always been this size even though I'm swimming in my clothes and my pants fall right down without a belt.

The look of confusion and concern on her face only reaffirms my low opinion of myself.

Everything is a lie - and I can't pretend that it is all for her own good anymore.

2017.03.27

I'm so full of hatred and poison now, I'm amazed my exhalations don't drop birds from the sky; my footsteps scorch concrete and kill grass. For you see, hard times at Casa Muncie are on the upswing and there is no relief in sight. Indeed, the future holds an ironclad promise of  unavoidable confusion, depression, isolation, and hostility.

And now, into this lock-box of misery, steps one of MW's unbelievable relatives bringing yet even more anger in each wicked hand.

I'll take this much culpability - I did answer the phone when he called. Normally I divert or hang up on any of MW's relatives, but I'd been caught off-guard. MW had been working the phone that day, trying to get things "organized" for a day-trip she wanted to make. Ten hours on the road for a two hour stay at an expensive hotel in Dallas because.... Well, just because. And when we travel, we're not allowed to use public restrooms or eat at restaurants. All food for the day must be prepped and packed before leaving. We can use the bathroom at the hotel - that's why we're renting the room at $300 for a couple of hours - but we can't sit on the bed and/or chairs without first covering them. So we had to hit the stores for cheap sheets and other items (flip-flops because we can't step on the carpets) necessary to make this trip a success. And while I was gathering supplies, MW was busy making reservations and such.

Anyway, when my cell phone rang and the caller ID read "Private", I should have just diverted and told MW that it was a wrong number/spam. Stupidly, I answered.

It was one of her out-of-town cousins. From her mother's side. Who should know better.

Surprise! He had a stop-over in our city and wanted to see us. Unfortunately MW was right there in front of me so I couldn't brush him off without alerting her. With no other option, I put him on hold and told her who it was and what he wanted.

She panicked. She told me to tell him that we couldn't do anything because.... We were having diner with friends.

Which I did. Then he started complaining about how he never comes to our city and he only wanted to meet us for an hour and we would still have time to meet our friends. I didn't relay any of this, of course, I just smiled and said into the phone "Okay, thanks for calling. Good to hear from you!"

Then hung up with my heart pumping black, poisonous blood.

That fucking cunt! Throw guilt on us? When he goddamned knows his cousin is at risk for HD? Okay, the layperson gets a pass - but he, he himself, hisowndamnedself, his highness personally - comes from an HD family. The coin dropped favorably for him and his - God bless and keep them - but not only is he as close to the disease as you can get, he's also a goddamned doctor of psychiatry! And he knows his cousin is almost 50; he knows she's been having "issues"....

Absolutely incredible, the way these fucking people act.

But it gets better.

Later that day, we've run most of the errands in preparation for the Big Trip and MW decides to lay down for a nap. No sooner has her head hit the pillow then there comes a knocking at our door.

Her cousin. Unannounced, uninvited, even after I've told him we wouldn't be home... There he is on our doorstep, banging away.

MW flies into a panic. She's runs towards me, saying in a "stage whisper" to be quite so we can pretend we're not at home.

Of course her whisper is just a notch below a normal person's shout. The cousin hears her and commands that she "Open the door!"

And I would have too; if I owned a gun.

But I don't. So we stay away from the door, huddling in silence until he leaves.

Very rarely have I ever been literally sick with rage, but this certainly qualified. I was shaking, quivery, nauseous. I wanted so desperately to run after that fuckwad and tear his cunting head off.

How dare he?

I mean, really. How fucking dare...

The thing is - we need so much help. Jesus, do we ever. And family is everything, right?

Right.

Assuming I don't die first; I will not have those motherfuckers at MW's funeral.

I cannot think about this situation without my vision going blurry and my teeth grinding. I hate them so utterly and completely. I'm filled with venom. It bows my back and hurts my guts.

And I really need to be feeling like this now.

***

As I said; times are hard. MW's irrational behavior - of which I've become expert at managing - has lately been coupled with vehement anger. When she topples her bottle, it is my fault for filling it too high; if the dog barks, I should have trained him better; and when I try to clean up around the house...? I can't do anything right.

Of course the reason I don't do anything right is because I don't care enough about her.

This is what I hear constantly. This is what I hear after I work twelve hours, come home and spend the next four hours cooking, cleaning, and generally taking care of MW.

The other day she yelled at me for breathing too loud while she was trying to watch TV.

Yeah, okay. That ain't her; it's the disease.

So I'm HD's bitch. I get it. And I deal with it, mostly, but I get so tired.

***

I make it through the day's like an emotionless automaton. When MW rages against me, I stand and take it. I let it storm; my thoughts to the sink full of dishes or the food that needs to be cooked for tomorrow and how much longer until I can get those chores done. How many hours of sleep will I get? Four? That would be good....

But lately it has dawned on me: once MW is no longer able to equivocate her condition; once she's been fired from her job or can no longer control her physical movements; then she will turn against me with a scorching hatred the likes of which I'm not sure I can withstand.

She will blame me - rightfully so - for hiding the condition from her.

She will accuse me of not caring enough to tell her she has the disease.

I will have no response; no defense. Yes, I have been lying to her for years. And it won't matter that she has told me she'd rather not know.... It won't matter that she even asked me not to tell her if I thought she had it.

When she can no longer avoid the truth; she'll know I've betrayed her.

That's not going to end well.

2016.12.23

What's the opposite of gaslighting?

Gaslighting. I hadn't even known that was a real thing - I mean, I'd seen the movie and heard the term used before, but always in a context that was so bizarre as to be fictional. Or humorous - "you trying to gaslight me?" But, apparently, it is a form of psychological abuse common enough to be buzzed about these days. They even had a story about it on one of the local news stations recently. 

And, once again, it caused me to question my behavior towards MW. 

What the hell am I doing to her?

This comes after a particularly treacherous Sunday where my little house of cards came so very close to collapsing. MW fell down suddenly and without any provocation. One second, standing; the next, on her knees on the floor looking dazed and confused.

And, oh, that was not good.

But before we get into the after-effects, allow me to expand on some of my experiences with the symptoms of early-onset dementia via HD. First and foremost, if you haven't actually spent time - real time - with someone who has Huntington's disease, there is no way you'll ever understand what it is like. This isn't hyperbole or aggrandizement of the disease. Yes, there are plenty articles you can read about the "cognitive" disorders - difficulty organizing, perseveration, depression, on and on - but unless you live there...? You couldn't possibly understand.

But I do. And I've learned - hard - how to deal...? No, not deal exactly. But how to... use? How to use MW's myriad spikes of dementia to my advantage. 

Sounds dubious, and I suppose in a way it is. Reverse gaslighting.

See, MW cannot disassociate her own experiences with external forces. A mouthful, but basically, if there is something that causes something, it doesn't really cause that thing unless it happened exactly the same way to her.

Errrr. Maybe an example will help. So MW occasionally gets rashes - heat rashes - around her collar. Nothing remarkable - happens to everybody, but each time one occurs on MW she sinks into a pit of worry and despair. Why is she getting the rash? What does it mean? Is it cancer? Will she die?

I do my best to calm her; no, it is just a heat rash. It'll fade soon. Be patient.

But that answer can not assuage her because she has been in hot weather before, and it hasn't always caused a rash.

No, see, that's not what a heat rash means. It isn't just weather.... 

Anyway, no matter how hard I try to convince her otherwise, she can't disassociate her experiences. The rash could be caused by a bug bite - she's been bit before without getting a rash. Might be anxiety - she's had worse days. Maybe an allergy - but she's never been allergic to anything before

Like that.

Now back to the fall: MW recovered physically - not even bruised - but the downward emotional spiral was intense. The fall, she knew, was a symptom of HD.

Of course not, I assured her. Everybody falls. Not everybody has HD. You've nothing to worry about.

She wasn't buying it: Not everybody falls, she said; not like that. She was certain she had HD; and continued to press me to acknowledge that fact.

But I stuck to my guns. Falling has nothing whatsoever to do with HD. Not even close. Not relevant at all. Falling is just an accident and accidents happen to everyone.

Again, if you've never spent time.... You probably wouldn't believe how long this conversation went on. MW would not; could not let it go. She insisted I tell her the truth - she insisted I tell her she had the disease.

It wore me down. I almost cracked. 

But then I had an inspiration:

Your mom never fell; I asked her. Did she?

MW thought about that. No. No, my mother never did fall down.

See? Your mother had HD, but she never fell down, so falling down is not a symptom of Huntington's Disease.

Bingo. I'd proven to MW's satisfaction that she did not have anything to worry about; and I did it by exploiting her own "cognitive" weakness.

Because of course her mother had fallen down. Of course she had. MW hadn't been with her 24 hours of the day; and the time she was with her would have been around the house where, even if she had fallen, she wouldn't have drawn attention to that event.

But MW always bragged about how healthy her mother had been up until the diagnosis. How strong a woman.... Hell, I believe it is quite possible MW had seen her mother fall; but just couldn't make the connection because after the diagnosis it was all pretty much house-bound, moving only when assisted or by wheelchair. Hard to fall when you're in a wheelchair.

So a stiff wind had blown; the walls buckled and plaster fell from the ceiling, but I'd managed to keep the whole goddamned mess together. One more time. 

And I owe it all to reverse gaslighting.