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.

2016.11.08

Yet another round of hateful holidays. 

In one regard, this has been the best holiday season we've had in years because MW is socializing some and even eating out on occasion. So we do have Thanksgiving plans that will keep us occupied most of the day. Much better than the previous five years with the holidays spent alone; sitting around a dark house depressed. Instead, we will be eating lunch at a friends and, later, turkey at my brother's. A full dance-card. Then, on Friday, we're meeting another set of friends for a pizza diner. 

Too busy to be sad. Hopefully that holds true.

Of course, there is still plenty to be fearful about this horrible season. Primarily, MW's chorea is pushing right up to that edge where I'm not sure I can obfuscate the truth much longer. Every single day brings a newly broken dish; a mess of spilled food. Also, she is becoming very difficult to understand; not only in speech, but the words she uses are confusing. I think I do well parsing MW's meaning at home, however, I worry about her going to work. Her primary job is data entry over the phone. Indeed, the job doesn't require much by way of formulating thoughts or presenting unique information, nevertheless, she stammers and slurs a lot, at least when she's around me. If she does the same at work...? 

And that's just her job; what about visiting friends? Eating with friends? What if one of them says something about MW's behavior? Her appearance? Something innocent - even said to be funny - could send MW spiraling. 

I hate not having control over MW's environment. I hate this time of year.

Well, we've no choice but to push through. And there has been another life event that's sort of working to my advantage. MW is, apparently, starting menopause. How can this be advantageous, you may rightfully ask, and the answer is - the symptoms of menopause got nothing on Huntington's disease. Indeed, they're even helpful as long as they provide a distraction. So MW has been obsessively anxious about hot flashes lately; well, that's a whole hell of a lot better than her being worried about having HD. Yes, the obsession itself is equally exhausting and frustrating, but there's no real terror of misspeaking. I don't mind spending countless hours batting about the intricacies of menopause because, no matter what, it's just a natural thing. It's going to happen. There are no traps or pitfalls for me to skate around.

I can't fuck up menopause.

2016.10.20

Along with chorea and speech issues, there has been an up-take in MW's distrust and overall irritation towards me. Nothing as significant as when she accused me of trying to poison her, but I credit that to the fact that I've been extremely cautious lately. No more soapy dishes and everything gets put back in place. Nevertheless, even though all her food is prepared correctly and there are no items laying around that could possibly present a tripping or toppling danger, MW will dig through the trash to lay eyes on every piece of junk mail I throw away and on more than one occasion she's followed me when I've gone to the bathroom to ensure I don't make any unannounced detours around the house. In truth, I do sneak around and clean things when MW is not paying attention - she won't let me otherwise - so having her shadow me with the fish-eye is making things difficult around Casa Muncie.

Also, on a daily basis now, MW will pick a political fight with me. No matter how I try to deflect the issue, she will fly into a rage over how weak and useless I am because I don't support her candidate. Truthfully, I don't support or not-support either of them. I could care less. As I like to say, I've got the kind of problems money can't solve. However, because each day brings a new political "bombshell", MW has plenty of ammunition to use against me. She'll hear about some perceived outrage towards her candidate or egregious corruption of the opponent and stew over it until she explodes because I don't care as much as I should.

Over the past few weeks I've been routinely called an elitist, a wimp, an America hater, even a traitor and MW let's me know often and in no uncertain terms how much she "hates people" like me.

In retrospect, I should have registered which would have enabled me to at least lie about who I would vote for; but I just couldn't bring myself to make the effort. And I know it wouldn't have made a difference anyway. I can't possibly match MW's boundless fervor - good Lord I haven't the stamina! - so I try my best to defuse these situations. It's hard, though, because showing calm in the face of MW's fury only seems to add more fuel to that fire; and on a couple of occasions it has stopped just short of physical violence.

I will be so fucking glad when this stupid election is over. Yes, I'll take some hits afterwards, especially when her candidate loses, and even then I'm sure something else will come along, but at least there's a chance that whatever's next might be more manageable; not as persistent. 

2016.10.05

It's been a long cycle of a revolutions from incapacity to functional with wheel grinding us away a little more each time. 

We're going through another downturn now - MW has grown fearful of how her legs frequently "buckle" - and she is once again sinking into a place of despair and dysfunction. 

She speaks often of Huntington's and has been trying to box me into talking about it - aggressively asking me what I know about the disease; what are the symptoms; and wouldn't I tell her if I thought she had it?

So far I've been able to equivocate. I reassure her over and over again that she doesn't have any of the symptoms, she doesn't show any signs, and she does not have Huntington's Disease.

She keeps pressing, but I stick to my lies. What else can I do?

What really tears me apart, however, is when she starts running the numbers - talking about how her mother didn't get the disease until she was in her late sixties. How her aunt was almost seventy when she got the disease.

Plenty of time.

And I wonder what, if anything, she would do differently if I told her the truth about the time she has left. 

Would she decide to make the best of her remaining years, or would she succumb to despair?

"You wouldn't even tell me if I did have it," she noted. "Would you?"

"How can I answer that?" I replied.

She thought a moment and then said, "I guess you know I wouldn't be able to handle it."

"Well," I said. "Good thing you don't have it then."

This is a bad turn of the wheel. We're back to rearranging everything in the house to accommodate MW's anxieties. Beds and sofas moving hither and yon. Blankets tacked up everywhere. And every day she tells me she hates her job and wants to quit. I encourage her to do just that, but she stays because she's afraid of being home alone. Still, it is just a matter of time before she leaves or is fired. 

And the little disasters are increasing in frequency and severity. Every day it is some new mistake or accident from the worrisome (coming home to a house reeking of burnt food) to the bizarre (getting an upset phone call because MW hadn't been able to get her wet bra on so she had to go to work wearing three shirts and no bra. The call was to have me research bras that have a front clasp.)

The question is, will this revolution pass? Will she once again settle into a more-or-less functional state? How many more of these bad turns do we have before the wheel gets stuck?

2016.09.22

A milestone: this marks the hundredth entry, encapsulating just about three years of our Huntington's Disease journey. Surprisingly, some things have improved since I started this journal. MW manages to sleep most nights now and has kept a part-time job for two years. She started socializing again and last week she ate out at a restaurant for the first time since I don't know when - close to five years at least.

On the other hand, the chorea and speech issues have become more noticeable. Volume control, in particular. I'm still getting used to the way MW will start shouting for no apparent reason. And the house.... It has become like a bad situation comedy. When I get home from work I ask myself how much worse today's mess will be from yesterday's mess; and I'm always surprised by the level of chaos and disorder.

Last week, after the visit from her ghoulish relatives, MW confessed that she still thinks she might have the disease, but quickly countered by saying she won't actually get it for another twenty years because her mother was in her 60s when she got it. That's not so bad - twenty more years of health and productivity. She can live with that.

Boy, I could too. Twenty years? Hell, she might outlive me at that.

When I take a step back to assess my own physical and emotional pain, I grant myself a certain amount of indulgence. I'm old. Things are falling apart. I haven't had a drink in three weeks and my chest hurts at times. I have a hernia which causes near constant discomfort and, occasionally, even immobility. I'm frequently short-of-breath and a few days ago I felt as if I might pass-out at my desk. I have an odd, quarter-sized scabrous growth under the hair just above my ear and another raised, discolored patch of skin at my temple. When my brother asked about it, I lied and told him my doctor said it was nothing - just a mole.

I haven't seen a doctor in fifteen years.

Now for the emotional pains: my life has become a ceaseless lie. I spend every second of every day either at work or taking care of MW while assuring her she doesn't need to be taken care of. Keeping it going is hard and constant work. Aside from lunches at the office, I haven't sat down to eat a meal in years. Around the house I'm always on my feet cleaning or providing. I get four hours on a Saturday while MW is at her part time job to do those chores she won't let me do when she's at home; such as laundry, ironing, and scrubbing the bathrooms, etc..

To my credit, I have been and am strong enough to push through the hardships. My rule around the house is: whatever MW wants; MW gets. Whatever. All she needs to do is tell me and I'll make it happen; no matter how irrational or burdensome the task. Midnight and we have to move the mattresses again because it's too dark in this room? Not a problem. I'll do whatever she asks, whenever she wants.

Because I'm not dying of Huntington's Disease. It truly is the least I can do.

But how do I reconcile this philosophy with my own failing health? Shouldn't I take care of myself so I can continue to take care of MW?

And there's the disconnect. See, I have no idea if I'm doing the right thing for MW. I know for a fact that if I were not alive, she would have to seek professional help. She cannot function on her own

Professional help. Not just me, running around on aching legs, waiting for things to get worse.

Every day I exhaust myself for the sole pleasure of watching MW succumb, little by agonizing little, to a fatal disease. Granted, there is no cure, but there are treatments. Support. By protecting her from herself, I'm keeping her from those treatments. From that support.

I don't know if what I'm doing is right; but I know I can keep doing it until I collapse. I've proven my resiliency. Still, whenever I catch a calm moment, an unbidden phrase enters my head. It speaks to the end of this toil. I hear it at least once a day. Yes, I immediately push it aside and carry on, but the words are such a part of me now, it has become like Salinger's famous Ohm prayer. Whenever there is nothing else, there is always that wish.

And so when I wake up feeling as if a metal band is being tied around my chest, I do nothing but lay and wait. If it passes, it passes. If it doesn't. It doesn't.

2016.09.07

I look back on this long Labor Day weekend and shake my head in amazement. 

We made it. For the first time in over three years, MW had family at our house and somehow we made it through. We're still going - still living the lie with no outside interference. 

Incredible.

But then, maybe not so much. Her family are terrible; just awful people. I truly believe they get a charge out of knowing she is sick. A real perverse Schadenfreude is going on with those slags.

Here's why I think so:

There were two sets of cousins in town this weekend: one from her mother's side (they are also at risk); one from her father's. For the most part, MW gets along with her maternal side relatives. Don't misunderstand that to mean they keep in touch or offer support or help of any kind, but she can talk to them without getting yelled at. Her paternal side is a different story. Three years ago when MW expressed concern that she might have HD, her father's sister called MW up and yelled at her about it. She said it wasn't an excuse for disobeying her dad.

True. 

Anyway, the maternal cousins were staying at our house; but when the paternal ones tried to contact us for a visit, I didn't respond to nor did I tell MW they were in town. I'd hoped they would just go away.

Of course, they didn't. They came over unannounced and with no invitation.

This is Texas. If I owned a gun.... Sadly, I wasn't even in the house when they rang the bell. I was out back with the dog. When I came in, MW had already opened the front door.

You can imagine the shock, fear and rage I felt when I found them standing in my living room. Maybe they saw it on my face, or maybe not; but for some reason they were unexpectedly polite and civil. The situation made MW nervous - I could tell by the hyper way she spoke and her exaggerated movements - but she did not get upset. She just went on one of her protracted rants about the evils of pharmaceutical drugs which ate up an hour of conversation. By the end of that, they'd had enough and left peaceably.

After they'd gone, MW summed it up perfectly: "They came by to see if I have Huntington's," she said.

And she was right, I'm sure. To MW's mind, however, she believes they were either still uncertain or convinced otherwise. 

But I'm pretty sure MW's conversation was odd enough; her movements disjointed enough, that they left knowing she was sick.

And God help me (and them. More them.) I honestly believe they left happy.

What can you do about people like that? I've long since given up any hope for help or even sympathy from that side of MW's family, but at least they could be decent enough to leave us alone to die in peace. It's like they can't wait to dance on our graves so they come by to wiggle their hips just to give us an early taste. I don't have the time or energy to expend much emotion on hate these days, but whatever I have goes to those fucking assholes.

The maternal cousins were much better. They were just using our casa as a landing place while they attended a wedding, so they weren't around very often. That made it easy. Also, the boy's mother is currently in the final stages of HD, so he himself is waiting for the "No Country For Old Men" coin to drop. Therefor, he is more empathetic and patient with MW. Him and his wife were good company. MW enjoyed herself around them and so the weekend was a success despite the ghouls showing up.

My gripe with the maternal side of MW's family is how they, too, try to run and hide from the disease even though it's already latched to their backs, screaming in their ears. Not that I blame them - I'm doing the same thing in extreme - but I imagine how much better things could be if everybody was open and honest; proactive and supportive instead of hushed and furtive. Maybe then MW wouldn't be so intractable against seeking medical help.

Maybe, but probably not. Nice to think about anyway.