20200925

Preamble here: http://hdthejournal.blogspot.com/

Amble? Well, two ambling towards the grave, isn’t it? One eager, the other ignorant; both picking up the pace.

Who will win?

Therein lies the point. If there is one.

More than hope - I expect to die first. I drink enough to make that happen; I think (hope). MW, on the other hand, is eager to live a long, long time. Every night she holds my hand and prays for health and a long life. Ha! She’s the one with Huntington’s Disease. She’s the one who can’t hold a job, can’t prepare her own meals, can barely feed herself, and more than often now finds herself standing in a puddle of her own piss wondering, wha?

She may very well snap the ribbon on this race. What of it? So, I lose. No matter. She dies first, I’m a close-ass second; no doubt. See, I’m very, very ill. And addicted to alcohol. Also, I’ve been guilty for so long, I’m no longer able to think of myself as a free man. Once relieve of my responsibility to MW, I’m gone. Outtahere.

You didn’t read the preamble? But that’s… that’s years of my life. It explains everything! Yeah, right. TL;DR. Okay, in a nutshell, MW has HD. She’s doesn’t know she has it. She hasn’t been tested. She will NEVER voluntarily be tested. She asked me long, long ago to never tell her if I think she does have it. Since then, she asks me everyday (twice on Sundays) if I think she has it.

What would you do?

I lie.

For Christs sake, she has little scraps of paper taped all over the walls with reminders such as “don’t fall down”, and “don’t be sad.” Last week we bought poster boards, wrote “check stoves” on them and hung them from the ceilings around all our doors so she’ll know not to leave the range on before leaving the house. She pisses on herself. She can barely eat with silverware – prefers to use her fingers. She’s up all night, sleeps all day. Worried about her balance, she went online to find exercises she can do to improve. The result? She tumbles every time she tries to stand on one foot. Her mother died of HD. 1+1=?

What would you do?

I lie. And I drink.

Her erratic behavior has alienated all her friends. I’ve told my family to keep their distance because they could never understand (they did not sign up to be HD warriors). And her family is a right bunch of c*nts. Which leave us totally, absolutely, and desperately alone.

There could not be a more life-and-death situation than this; but I lie to MW about it every day. For years. Approaching decades now. This amount of deception has made me sub-human. I have difficulty carrying conversations with co-workers for fear they’ll clue into my pain. I avoid eye-contact with strangers. I do not have friends: way too dangerous. Huntington’s Disease is a pimp. I’m its whore. I live every moment of every day hoping against hope it doesn’t slap me silly.

As an aside – MW is a li’l bit of a thing. I’m a monster of a Norwegian cast-off. She can’t hurt me; not really. Except with her tongue (which she often does – oh, my, yes). But recently her innocently(?) applied slaps and pinches have left bruises and clots. For any out there who may be dealing with HD-caregiver issues without my undeservedly stout Viking genes…. God bless you.

Another irrelevant but totally relevant point about MW – she’s Indian. Dots, not feathers. So what? Recall what I said about her family? Yeah. They’re all doctors, engineers, bankers - hyper-successful stereotypical Asians. Me? I consider them all exceptional gardeners. Oh, they’re expert at pruning diseased branches! They know how her mother died. They know about HD. Many of them are at risk themselves. Do they care? Do they call?

Nope.

Snip snip. Branch cut. Blue skies above.

Hell with them.

To hell with me. If I die first, MW will be at their mercy. I’ve no doubt they’ll tuck her into the cheapest LTC they can find. And if they don’t find one cheap enough, they’ll create a “nursing home” from cardboard boxes in an ally off MLK Street. MW will live out her days uncomfortable, uncared-for, and probably abused.

I should care about that…. More than I care about where the next drink is coming from. Yeah. I suppose I should.

But this has been going on for so long with no end in sight. I’m exhausted…. My death. My death? Well. My problems will be over then, right?

Right.