2018.02.22

Another death. This time a friend's mother. Point of clarification - I have no friends. Really, she's an old school-mate of mine whom I reconnected with via email a long time ago. We trade bouts of emails every so often, but haven't spoken in fifteen years; haven't seen each other in almost twice that.

Anyway, last year she'd informed me about her mother having a stroke and being in a nursing home. Sad. Just today I get the note that she's passed on. Well.

Again, unbidden and inappropriate, I marvel how wonderful it is that her mother's problems are over. Of course I don't mention this in my reply; "You're mom died? Wow. Good for her." 

But that's it. That's where I go with death. Can you blame me? The fucker lives in my house and never sleeps. He's always there, filling every room; every corner with madness, sickness and despair. And he won't leave without taking one of us along.

And he's so powerful. Absolutely in control. All I can do is wait helplessly for him to act. So when I hear about death taking somebody else...? Lucky. They're lucky.

***

Returning to the documentation I downloaded regarding the cognitive effects of Huntington's disease, there was a pamphlet on driving cessation in HD. Again, I was struck by the eerie exactitude of symptoms. Specifically, spacial perception. I'm forever cautioning MW that she is too close to the curb/other car/median, etc., and she rarely makes a clean turn these days. Whenever she parks a car in the garage, there will not be enough room to open the door on one side or the other.

What manner of disease is this? How can it be so precise in the ways it fucks you over? 

More: one document cautioned caregivers that the HD patient may employ racial slurs. Oh, come on, now, that can't be part of the disease! Surely such discrimination must be learned behavior; not a symptom.

I don't know.... I don't recall MW being as intolerant as she is now; not when we first met. These days, however, she sees the world almost exclusively in terms of racial profiles; generally unfavorable, mostly downright hateful, profiles. I've long since stopped trying to steer her away from racism - it's a lost cause and almost always comes back to bite me when attempted ("The reason America is going down the drain is because wimpy white people like you don't fight anymore!"). Plus, because she herself is an immigrant - born in Bombay - her tirades against foreigners comes off somewhat comical. Or they did at first. Now, it's just depressing and exhausting.

But, apparently, this too is a symptom of HD. I guess. Seems impossible, but according to the documentation, racism is common enough that it ranks being mentioned as one of the disease's many cognitive disorders. 

Truly uncanny.

***

While I'm at it; I might as well take a moment to explore the documented caregiver "symptoms of overworking and chronic stress". First two: irritability and depression. Fucking duh. I put on a brave face, but these days my silent thoughts are almost exclusively "fuck off" and "I wish I was...". 

Vague physical pain: I do have a self-diagnosed hernia. That provides plenty of vague physical pain. Conveniently, I use it to explain everything from twisted guts to spiking headaches. 

Insomnia and occasional dizziness: Yes, but I can put these on the feet of alcoholism and, recently, abstinence from alcohol. Fucking lent. 31 more days.

Fears: Interesting that they mention fears, for indeed I have passing waves of unaccountable dread. Initially, I chalked this up to worry over MW having a bad accident; but after so many years, I can't say that's forefront anymore. I'm resigned to it. Whenever I don't hear from MW, she doesn't answer the phone, or is late picking me up, I feel no anxiety; only sad resignation. When she does eventually show up, there's no relief, just the thought, "Oh well. Next time."

So why the fear? 

I can't say I care much about my own health or vitality. I still end every night with a silent prayer that morning won't come. When those "vague physical pains" ratchet up, I gulp two Advils and ignore them. As a counter to MW's incessant worry over cancer, I could care less about the odd stabs of pain or skin discolorations blooming over my sagging body. 

No, I don't fear my own mortality.

What, then? The best I can do is the impression that I'm out of time. A few days ago, when experiencing a moment of inexplicable fear, I had a fleeting thought that I'd better do something fast. It was a feeling of directionless, anxious, nervous energy.

It panicked me. 

Tiredness: Again, duh. The tragedy here is that I'm too exhausted these days to even read. I used to read a lot. It was an escape. I really miss that.

2018.02.20

I'm so glad we never had children. Not necessarily because of the disease, but just.... Life. How miserable, hopeless and stupid it's all become.

Okay, maybe that philosophy -or the statement of such - is flavored by the disease, nevertheless: look around. Value has been removed from everything; replaced by accessibility. The quality of the aggregate of things that gave life (as I knew it) meaning has been replaced by quantity. Friends, art, literature, intellectual curiosity, debate and introspection. None of these are elevated anymore; all of them are buried in a glut of casual acquisition. 

Well. Boo hoo. MW and I would still be dying SSQQ, even if the internet had never been born.

***

Yesterday somebody added a bag of garbage to our collection for trash pick-up. I'd finished another round of purging junk from the casa, so there were around seven large black bags of debris waiting for removal. To this, somebody added a small, white bag of mostly food-stuff (fast food wrappers, drink bottles, etc.) set on top of the pile.

This very nearly destroyed MW. She was certain one of our neighbors did it as a way to insult or intimidate us. 

Here's how I tried to walk her back: it makes no sense for anyone to do that with the intention of causing us dismay because most of the time the garbage men pick up early. The only reason MW had even seen that bag was because she didn't go walking in the morning so she got home before it had been removed. It could not have been meant as a "statement" if, under normal circumstances, nobody would have noticed. I explained that the most logical explanation was some service provider - a lawn mower, renovator, cable repair truck, etc. - saw the big pile of garbage and decided to chuck their refuse along with. Simply a matter of convenience for some lazy, inconsiderate person.

MW would have none of it. She blamed the neighbor across the street because they have a teenage daughter. Teenagers do things like that. They're terrible these days. Probably on drugs.

I couldn't persuade her otherwise. The neighbors are trying to drive us away by putting their garbage with ours.

So now we have to move. She's busy looking for houses today.

Whatever. MW can't maintain any significant course of action these days. The chance of us actually buying a new house are almost nil. In fact, she just now called to ask, "Could I afford the taxes on a $350,000 house if you die?"

Nice. The truth, of course, is "Hell, no." Actually, it would be "If I die before you? Game over, man."

What I said was, "Idon'tknowmaybe." That's always good enough. 

***

One of the Huntington's Disease sites changed it's layout the other day so I went surfing and downloaded some pamphlets on behavioral and cognitive changes. It is spooky how EXACT the information is. Every single one of the bullet points for major characteristic behavior changes in an HD victim describes MW to the T. "Loss of drive or initiative" Check. "Mental Inflexibility" Check Check. "Lack of concern for one's appearance" MW routinely leaves the house with her clothes on inside out/backwards/unwashed. "Decreased ability to empathize in the feelings and needs of others." Too right!

Side note: under the Tips for carers, they suggest you "Recognize the symptoms of overworking and chronic stress: Irritability; depression; vague physical pain; insomnia; occasional dizziness; fears; tiredness."

Good lord. I'm batting 1000.

I'm sure I've laid eyes on all this information before, but there a cold comfort in recognizing new symptoms. Awhile ago I'd mentioned how MW had started lagging in her responses to events or questions. How five, ten, or even more minutes would go by before she'd react. Well, that's there too: "Speed of cognitive processing is slower."

If only I could use this information to somehow gauge where MW is at in the progression. 

2018.02.13

Passed another mile-marker yesterday. Pulled up to the teller's window, gave MW the deposit slip, and she could not remember our bank number. This is a number she has had committed to memory for years. Something she uses at least once a week - often more - as she obsessively checks the balance over the automated phone system.

But yesterday it would not come to her when she needed it.

And worse than Huntington's Disease march to this higher ground was watching MW react to the new normal. The expressions on her face quickly running from curious to bewilderment until they settled upon furious. After the teller looked up our account through my driver's license and handed me the receipt, MW snatched it out of my hand and said, "Goddamnit, I knew it! I knew that number!" then violently crushed the paper and threw it aside.

***

Speaking of; "settling upon furious" has become the default around Casa Muncie. MW flies into a rage over everything, anything, nothing. She usually turns it around pretty quickly, apologizes, blames it on not being able to find work, but it leaves scars.

The other day, while helping her fill out applications, she came upon a very, very foolish employer who posed the question: What is unique about you? Impress us! 

MW demanded I provide her with something impressive. I gave a safe platitude; something along the lines of "I'm great with customers and a loyal employee".

This infuriated MW. I wasn't even trying, she claimed. Then she went on an extended rant about how she's unique because all the hardships she'd been through and on and on. When I tried - gently - to bring her back to the reality that the employer wasn't really looking for all that, she exploded. She said she hated me. Called me evil. Regretted every day we'd spent married. Then asked if I wanted a divorce.

To my shame, I said; sure, why not? After all, if I'm evil and you hate me...?

She eventually walked it back - sort of - but damage done. 

***

Another example: last night after getting off work, MW wanted to go walking around the mall. I asked her if I could use the bathroom at one of the department stores. She stormed away, furious that I hadn't thought to use the bathroom before leaving the office. It isn't safe, using public restrooms, and I'd ruined the whole night just by asking. 

Quite literally, it's gotten to the point where I can't even take a piss without pissing MW off.

***

As I said before; this will be the year when MW can no longer hide from the reality. Her movements have gotten very rough. Even when she's just trying to touch me, it's like getting slapped. When she grabs my arm, it's like a wrestling move. And, as always, she can't eat without the food going all over the place. 

Add to that forgetting every-day information like the account number and the fact that nobody - and I mean nobody: she's even lowered herself to applying at retail stores - will hire her once they've seen her.... I have to believe this is it.

***

I gave up drinking for lent. Again. Yesterday I pushed the whole Fat Tuesday a little far, so I'm fuzzy and achy right now. Going to be a long 40.