Pre 2021 setup

 My wife has Huntington’s Disease, but she doesn’t know it. I’m an alcoholic. She doesn’t know that either.

Long ago she specifically asked me to never, ever tell her if I thought she had the disease. And so, I haven’t.

I’m able to hide my alcoholism partly because I’m just that sneaky, but mostly because MW has advanced dementia symptoms. I’ve made a study of it: I’ll go through a whole day without speaking two words in a row to MW. Maybe I’ll grunt and go “uh, yeah, um”. Or, worst case scenario, I’ll commit to a “yes” or “no”, but that’s it. And those are the good days. If I ever must engage her in a meaningful conversation, it’ll go sideways quick. Those are the hard days. Those are the days that end with me sick on vodka, hugging a toilet bowl, praying for a purge before dragging myself into the shower for an ice-cold blast before going to work.

Those days I hate myself for not being able to do anything for my wife as she turns into a rictus faced, demonic mouthed creature with spastic claws for hands and a pitchfork tongue – cussing me like I’m some dog that just shat on the rug.  

It’s not her fault, I know. It’s the disease. I get that. But I wonder if I’m more a hinderance than a help. Oh, I do enable her. I allow her to have her head on everything. Our house is a horror-show – nothing makes sense. She hasn’t worked in years – well, that’s not true – she got a weekend job answering phones for a shopping network. But I must sit right next to her, whispering in her ear what to say and what to select on the computer. She says she needs the job. She’s grateful for my help. Then, of course, I’m a fuckwad for not having her meals prepared when she’s hungry.

All this while I work an average 50 hours a week at a real job.

I’m stretched so thin – I’m an alcoholic vapor. I evaporate before I make an impression on your eye.

And I wonder….

If I weren’t around, and MW had to get real help…

Real help.

People who would be brave enough to tell her the hard truth. Prepare her for the reality of her condition. People who would demand of her an acceptance of reality.

Not I. I who will take the blame whenever she drops a plate; “I’m sorry. I must not have dried it good enough. It was probably slippery.” Even though that means I’ll spend the rest of the night listening to what a piece of shit I am.

It’s the disease. Sure. But I’m so run down and exhausted….

Tell me; will MW be better off were I dead? Well, why or why not?

It’s becoming academic now anyway. I’m such a… an alcoholic. I’m sick. I’m short of breath. Most nights I wake up at 3 or 4 in the morning – my heart hammering like a psychotic metronome. I feel it cracking in my chest. My entire body slick with sweat. And I hope, oh God, don’t let morning come….

It’s a race to the grave and we’re in the final stretch.

But I’m going to break that ribbon. I just feel it.

Then things will be better. For both of us.

More crippling nostalgia

I’ve been listening to nothing but Van Halen for the past week now and I can say with all the conviction of a zealot: David Lee Roth has it all over Sammy Hagar. No mistake: Hagar is a consummate professional. His time fronting Van Halen created some of the most popular and lasting songs the world will ever know. Dreams. Right Now. Love Walks In. Finish What You Started, Top Of The World, Why Can’t This Be Love…. Anthems all. Dreams, in particular. MW loved that song. She played it on endless repeat during her ‘dancer-size’ when she spastically moved around to the music. Great times.

And let’s say it wasn’t crafting lyrics for hard rock songs; no, let’s say it was plumbing. And I needed to hire someone to unclog my toilette. I would absolutely hire Hagar. He’s the pro. I hire Roth? Fuck, who knows? Next time I sit on the throne, I’m just as likely to get a toilette water enema as a straight flush.

But for Rock ‘n Roll? Roth, hands down. He could surprise you with a clever (stupid?) turn of the lyrical trick; or give an un-called for yelp…. He was unpredictable. You know exactly what the next Hagar lyric is going to mean and how it is going to sound. In a word: perfect. Roth? Not so much. The context might be really, really stupid or the expression might be unnecessarily overwrought….

That’s Rock ‘n Roll.

And Hagar never came close to the gleeful inanity of “Happy Trails” or “Ice Cream Man”.

Look: Can you picture a gap-toothed, stop-motion Claymation hamburger strumming a guitar, flirting with French fries, and dancing around to a Hagar song? No. No, you can’t.

RIP EVH. RIP the 80s. RIP all potential I might have had.

Okay, less alcoholic moaning; more HD:

MW has a stay-at-home job answering phones for one of those home shopping networks. Of course, she can’t do the work, so I have to sit next to her, telling her what to say and do when the calls come in. So what? Well, for starters, I have my own full-time job and every sentient moment not spent at my actual job is dedicated to cooking, cleaning, and preparing life for MW. So, this piss-ant phone job severely cramps the schedule. Sitting next to MW, making sure she doesn’t fuck up this job, keeps me away from preparing food and organizing the house.

There have been two nights this week when I haven’t had any sleep. Like, none. I’ve got that bone fatigue that causes mental lapses and hallucinations.

I’m drinking double time to account for it all. Shit, I’m going to see and hear things that aren’t there – yeah – I might as well be drunk for it.

 ***

The crippling nostalgia comes and goes. I really thought I had put it behind me this time until Mr. Bob – I have great hair – Walkenhorst posted this song/video tribute to Steve Phillips.

And I’m devastated all over again. In particular, the lyric – “Hey! Let’s go set the world on fire!”

This comes upon the heels of an intense feeling of loss after Mr. Phillips death. He. Defined. My. Youth. The Rainmakers were with me through everything – my parent’s divorce, subsequently moving from school-to-school, every mix tape I made for any girl who ever smiled at me in High School contained at least one of their songs (depending upon the perceived sophistication of their humor; Big Fat Blond. But then, if they were the tragic type, No Romance.)

None of those mixed tapes ever worked. I didn’t get laid until college. Always magnanimous, however, I never blamed The Rainmakers for that. They were Rock Stars. Not Jesuses.

Regardless, I cannot overstate the impact Steve Phillips and The Rainmakers had on me during my formative years. Check it: as a youth, I fancied myself an artist (see Coffee for Crows), so I had a washing-machine box full of drawings I’d done during my teen years. I stored them in my grandfather’s basement. Decades later, when I uncovered them, I found rat turds – Yick! – so I threw the whole mess away. Not before shuffling through and finding many, many drawings I’d done modeled from cassette covers and KC free press clippings of The Rainmakers. I wish I’d’ve saved them. Oh, no. They weren’t very good (see Coffee for Crows), but they were my connection with my youth and that band. Both, sadly, gone now and forever.

Lost to time.

Which brings me to the point – “Hey! Let’s go set the world on fire!”

I wanted to do just that. I set myself up for just that. I failed. I suppose, at the end of the day, I did have two books published and an IMDB screenplay credit. Nobody read those books or saw that movie, but I was able to brag about it to my millennial nephew in this way; “Yeah, I spent twenty years writing stories and never made a dime. But then again, I never spent any money to publish my books either. I was just good enough to fool somebody else into doing that for me. Which means I’m better than E.L. James.”

Now let’s dovetail this regret to our Huntington’s Disease journey. I married MW young – I was just 20 years; she 24. At that age – it’s a scramble! Can we make rent? Can we afford groceries! Hey Now! I got a job at Compaq computers! The world is opening up for us! Then HD starts creeping in from the corners. It doesn’t happen overnight; but it does happen: I begin to realize MW isn’t… quite there. She makes bad decisions; or worse, she’s incapable of making decisions. We watch as her mother degenerated into the final stages of HD and black clouds form over my head.

“Holy shit. The storm on this horizon is fucking huge!”

And huge it is indeed. In fact, it washed me and everything I’d ever hoped for clean away. The one thing you must understand – unfortunately, something that nobody who isn’t familiar with HD can ever really understand – is how miserably slow that huge storm moves. The washing away isn’t as dramatic as a California mudslide. It’s more of a perplexing Texas City subsidence. Erosion upon erosion until we find ourselves backed up against the cinder blocks. We’ll be down there with the fishes soon enough. And not the normal fishes, like bass or catfish; no, we’ll be in the deep water with those freaky tsunami fishes that have periscope eyes, Dracula fangs, and that glow in the dark.

Freaks of nature. Huntington’s Disease in a nutshell.

“We always think there’ll be more time.” That’s the second lyric from Walkenhorsts’ eulogy that stung like a hornet. “More time.” 

 

 

Crippling Nostalgia

 Four years ago, I struggled through a bout of crippling nostalgia. No, really, believe it or not, there is such a thing. Well, kind of. The phrase is used more to deride people who don’t keep up with the times, but psychologist do recognize nostalgia as a serious problem.

Anyway, I worked through it by buying a bunch of shit off eBay and this, but now it is creeping back, brought on by the recent deaths of Steve Phillips and Eddie Van Halen. During the scant free time I have, I’ve done little these past few days other than listen to Rainmakers and Van Halen albums. I’m not ashamed to say, some of the songs have brought tears. Okay, I am ashamed to say that – I’m a grown man, I don’t cry during Eruption. And I wouldn’t, except that my life is in such a shamble, and that music is so joyfully, muscularly secure…. It wets my cheeks.

Those songs take me back at impossible speeds to the 80s; before booze and Huntington’s Disease and… all this. I’m recalling snippets of my life as a teenager in agonizingly clear focus. Make no mistake – I was just as mixed up and pathetic as any kid during those days. But at the time, I most certainly did not believe they would be the best years of my life. Yet here I am: crowding 50, in poor health, and a slave to two masters – the bottle and HD. Neither of which gives me a moments peace. Turns out those stupid, feckless high school years would be the best of my doleful life.

And I fucking squandered them.

An eye-doctor adjusts the lenses on the cumbersome device I’m looking through to see the past: Click clack click. “Better worse or about the same?”

Early 80s, Junior High it would be, I’m hanging with a friend and his older brother has some kids over to skate on their Half-Pike. Neither my friend nor I have boards (not that they would have let us take turns if we had), so we’re just watching. The older boys are playing Van Halen’s 1984 on a boom box. They wear torn jeans and no shirts. They smoke. Most of the skate-action is plebian – little more exciting than a handicap ramp – but every once in a while, one will catch air and come crashing down on his ass. Hilarious!

Those were the coolest kids I’d ever – or will ever see. And they rocked Van Halen.

Seems to me like there were a lot of older brother types around back then, and many of them had electric guitars. Ask nicely and they might let you mess around with one for a minute; some might even take the time to teach you a thing or two. Hey now! I’m playing Smoke on the Water! But then they would put Van Halen in the boombox and play Eruption and you’d realize you’re not holding something safe. You’ve got a king cobra in your hands. You’d better drop it or learn how to play.

A few years later my parents would divorce. Note that this was the mid 80’s, mid-America and being the child of a divorced couple made you somewhat of a scandal. Not that I minded. In fact, it was probably the most interesting thing about me. Aside from that, I was talentless, boring, aimless and weak. Then my mother uprooted me in search of affordable accommodation that would take me through four different high schools in four years. Again, I didn’t mind. I figured I could reinvent myself in these new environs. Nope. I was still the same shy nerd in different zip codes. But I briefly attained… not glory, exactly, but call it almost normalcy, when I made friends and had a passable social life in Collinsville Illinois High School. I actually had a girlfriend! She let me get to first base (no, really!). And there was a teen-club called Panama Jax. And the unofficial anthem of that club was, of course, Van Halen’s Panama.

There was a confounding maze of back roads around that club. Some of which terminated in dead ends butting up against farmers’ fields. Would I remember those back roads? Probably not; actually, I’m certain they’re gone now. I’d bet my life all that land has been developed. But I’ll never forget what I got up to on some of those back roads. With my girlfriend. And first base. And Van Halen on the cassette player.

In the late 80s, Israel and Palestine had nothing on the conflict between David Lee Roth and Sammy Hagar. I sided with DLR, but even still, I could not deny the catchiness and pop-power of Van Hagar. Their tapes begrudgingly found their way into my collection.

Not as popular, but much more personally impactful, I’ve already written about the Rainmakers. During those years, I was never further than an arm’s length away from a Rainmakers cassette.  

“Better,” I tell the doctor. “Much better.”

Crippling nostalgia. Indeed.

More

 Big Fat Blonde hooked me. Big Fat Blonde in all its glory, playing mono from a single-speaker clock-radio settled on the kitchen counter tuned into KY102 on a freezing November morn in Lansing, Kansas while mom cooked oatmeal and we listened for school closings (please! Oh Please!).

I can’t remember for sure, but I’d like to think school had closed. And I’d romped in the snow. Rolling and tumbling in the white stuff with the gleeful call “Sew-weeeee!” echoing in my head.

What I do remember with certainty is that I received The Rainmakers eponymous tape as a Christmas gift, and was allowed to listen to it in our K-Car’s cassette player during our post-holiday ride back from St. Louis to Kansas (the I-70 series). Rocking good time! Until the last song, Information, came on with those quasi-PMRC lyrics.

The car’s mood chilled. Father promptly ejected the tape and replaced it with the new George Thorogood, just in time for Wentzville.

This sticks in my memories as I now know how Father (sadly departed - also way, way too early), whose parenting skills ran the gambit from Absenteeism to Bemusement, must have received those lyrics.

His alcoholic sister had died from liver cancer at an absurdly young age and his brother was put in a sanitarium after having a breakdown when his lover died from AIDS.

Of course, I didn’t know any of this at the time. I was just a wee-un who loved The Rainmakers for their Rock and Wit and – oh, did they just name drop Chuck Berry? My Ding-a-ling*!

It took years – decades – of catching snippets of slightly inebriated conversations for me to fit the pieces together. That song must have resonated with Father. How could it not? The lyrics were right from his diary, for fuck’s sake!

Anyway, by then it was too late. Divorce and distance had separated my father and I inexorably. When he called to tell me about his pancreatic cancer; he did not bother to ask me to visit and, since I was embroiled in my own Huntington’s Disease drama, I didn’t bother to offer. Six months later he’s dead. I could not even attend the funeral.

The only thing we ever shared – without ever acknowledging it – was the last track of The Rainmakers eponymous CD.

It was enough.

RIP Steve Phillips.

*some associate Chuck Berry exclusively with Johnny B. Goode. I do not like those people.

 

 

 

 

 

 

 

 

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.