RIP Steve Philips

 Steve Phillips of The Rainmakers; later The Elders, has died, I guess. I saw something about this on a social media post. I did a very superficial g-search, with no confirmation. Fucking Steve Phillips is too common a goddamn name. Anyway. Must be true 'cause I feel it in my soul

Steve Phillips is dead. I’m still alive. God? What the fuck?
In honorarium, I’ve cued up all my Rainmakers. A song I never really paid much attention to hit the slot: “A Million Miles Away.”
Too right.
I walked the 1.5 miles to Specs Liquor to fortify myself, listening to The Rainmakers on the way and back. Listening to them now, pretending to work, but really Drinking On The Job. (So, where would I fit into the fading lyrics? The Litigation Support Analyst got…. Redacted…?”
I envy the dead. They accomplish so much more than I ever will.
Here’s something you won’t ever find anywhere else, but the whole point of this page is drunk honesty:
Steve Phillips is/was a much better guitarist than Jeff Porter. Porter is an excellent musician, no doubt, and a fine song-crafter, but Steve…. Steve could touch that raw/un-disciplined strata to which Porter has difficulty elevating too. There’s something to be said about being a tad sloppy when it is called for.
I’m one to talk. How far has being sloppy gotten me?
Well. To the point where I honestly don’t want to outlive anymore of my heroes. RIP Steve Phillips.
Oh, right, forgot…. MW and Huntington’s Disease. Well, last night she had me go out and buy poster boards, write “Check Stoves” on them, then hang them from the ceiling around all the doors so she can’t leave the house without at least colliding with this warning.
I’m a million miles away from normal, but I’ve nowhere else to go.

I'm so drunk and sad right now.... Did I ever tell you my idea for an HD Awareness T-Shirt? Eggshell blue with text on the front:

HD Care Giver Warrior sitting on the well-used graphic of the CAG DNA string. Then on the back the following message: "The Reason God Created Murder Suicide."

Nice, right? What am I going to do when I get home tonight and everything will be a fucking mess - the kitchen more than likely a safety hazard (burners, toaster over left on) - water, or other liquids, puddled on the floors and debris all over. MW asking me over and over "...so do you see any symptoms" (though you have to concentrate to hear the word through her slurring and stuttering).

What am I going to do?

Drink. Yeah. Drink. Hopefully listen to some more Steve Phillips and the Rainmakers from the 80s. Christ. I'd better fucking die before Tomek or I don't know what I'll do.

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.