2017.07.13

But it isn't always intolerable cruelty. In fairness, MW's flurries of rage only take up around 15-20% of our time together. Understand, however, that would be significantly more if I wasn't completely servile and voiceless. It is a tenuous balance. Many times MW's anger will be sparked by my silence being perceived as neglect, whereas I'm actually holding my tongue out of fear. I've learned that any fire started by recalcitrance burns shorter and cooler than the furnace-blast generated by misspoken or misunderstood words. To that end, I communicate mostly through grunts and non-committal stammering. It works most of the time; MW just keeps on talking.

I credit this for keeping the peace. Mostly keeping the peace.

What about the other 80%?

Half and half: 40% complaining about things; 40% worrying about cancer.

So, really, the bulk of my time isn't cowering in fear, but nodding along with whatever perceived injustice MW is suffering or repeating the mantra - "I'm sure it's not... I'm sure it's not... I'm sure it's not cancer."

Tolerable, I suppose. Sad, but manageable.

However, every so often there's a small moment of grief that is almost impossible to overcome. Not like the ear-drum piercing shouts or narrowly avoided acts of violence; but something so subtle, it quietly breaks you.

The other day, MW was rambling on - I can't remember about what - but she was talking, talking, talking. In the middle of it, she realizes she has to go take a shower, so, still talking, goes to the bathroom, undresses, and turns on the water. Then immediately comes back out to continue the "conversation" - nude, with the water running.

She talks and talks and talks. Minutes pass. Ten, fifteen....

For me, this is one of those hard-learned judgement calls. I could politely interrupt and tell her to go turn off the water, or I could rise out of the chair and turn it off myself. Either of these two actions, however, could start a tirade. I might be accused of not paying attention to her and get screamed at. So I do nothing but sit and nod and mutter "uh huh".

Fifteen, twenty...

Eventually MW stops, looks around confused, and says "What am I doing? Why am I standing here naked?" And shuffles off to the shower which by now, I'm sure, is cold.

Just that expression....

Confusion. It's worse than when the hideous contortions of rage twist her pretty face.

***

From the misery/company corner: a FB post about how HD is like a body snatcher. It takes a person away and leaves behind something else.

Yeah. That's pretty good. Expand it to the caregivers, too. HD has stripped me to nothing and tacked up a thin, paper mask as a replacement.

Indeed, many people are changed through hardships - some forged into stronger mettle; other's collapsed into waste. But my experience with HD is different. Hardship, sure; but so relentlessly hopeless and isolated.... Take the social media postings: I check them to connect, but I can never post anything. Inside my house, I canonize myself a saint, but I'm not so far gone to realize that I would be seen as a monster to anyone else. Especially in the HD community. They would recognize my behavior as negligent, dangerous, maybe even mocking.

I'm alone here. No family; no friends; just a bogus account on social media platforms crammed with suffering. Not stronger; no weaker. Just gone.

There's nothing left of who I used to be. My job is mostly done on computers - very little human interaction. I don't talk at home. Sometimes, when I do open my mouth to speak, what comes out is raspy and broken. A stranger's voice. I have to clear my throat multiple times just to form words.

The "person" I talk to most is my dog. He's cool, but....

I've been removed from family; society.... humanity. I've been removed from myself.

Goddamn this disease.

***

Which brings up another, interesting thought.

A cure. What if they did find a cure?

Well, it depends, doesn't it? Could the cure reverse the damage done? Not only halt the onset, but restore the brain to healthy?

If not; if the cure only prevented further degeneration; it would leave us stuck in this... living hell where MW can't really function without help and is prone to anger, depression and confusion.

But if a cure could restore the victim?

I wonder if MW, once cured, would even recognize me anymore. I can't image her caring for the person I've become. I certainly don't like him much.

So if MW were to become healthy again, could I recover too? Or would is it just too late for us anyway?