Christ, New Year all ready. So, what did I learn in 2015?
Well, I learned that I was wrong about the disease's progression. I had assumed that, by now, MW would be at a stage where she would have to be on medication and/or I would have to quit my job to be a full time care giver. Wrong. MW's still in full denial, I'm still working, and life - such as it is - continues to go on and on.
Great. Now what? Another year like this? Two? Five? Jesus....
What else? I learned I can't stop drinking; although one of my resolutions will be to knock it back to only wine. The hard stuff is taking a toll. The hell. They say one glass of wine a day is good for you. Then one BOTTLE a day must be at least four times as good, right?
But the biggest lesson - the milestone lesson; the life changing lesson; the one once learned can't be forgotten - I learned that I'm the type of a man who won't go to his own father's funeral because I'm too big a coward to fight against this monster.
I could have gone. I should have gone. But it was easier not to have to deal with taking MW and HD on the road and, hey, I'm all about the easier.
So many such things I skip because I figure an equivalent will come around again: holidays, graduations, other family events. Eh, I'll try to make it to the next one. Sure, once MW goes on meds or maybe when I can leave her with a caretaker or put her in a home for a day or two.... Then I'll show up for the college graduation.
Ah, but I'll only ever have one dad. Nope, not going to be another funeral for my father.
And I didn't even try to go.
Goodbye, 2015. You were shit, but even at that, you'll certainly be better than 2016.
Wednesday, December 30, 2015
Sunday, December 27, 2015
2015.12.27
Rough - super rough - time of the year. No point cussing about it; not anymore. Suffice it to say Christmas was pretty awful. Again. But we made it through. New years shouldn't be quite as bad, and, once that's done, maybe we can keep on rolling another 365 like this.
Maybe.
It is too depressing to get into - depressing and repetitive - so I won't rehash every little bullshit HD thing that made this holiday season balls (imagined illnesses, sleepless nights, terrifying mood swings). Still, perhaps a little elevated from last year because during one of MW's horrific rants about how bad of a person I am - she asked me to go drop a gift off at the neighbors. They weren't home. When I came back she accused me of not even trying to give the gift. This set her off for a few hours of an absolutely vicious and vitriolic diatribe against me. And, yes, she became physically violent. Nothing I couldn't handle, but then, I'm a big guy - anyway, in the course of shearing me down one side then the other, MW mentioned that - if this was how I'd treat her when she asked for a simple thing like delivering a gift - how bad will I treat her when she really does get sick and need help.
Huh?
Headlights. Deer.
Is this a sign of self-awareness? Should I take the moment to suggest seeking help?
Of course I didn't. The tempest raged awhile longer then subsided. And I was able to drink my decision to make no decision away. Status quo retained through liberal application of wine and vodka. Oh, yes, of course that combination makes me sick.
Eh. I deserve it.
There is a particularly cruel philosophy of war that it is better to wound an enemy soldier than to kill him. Because the soldiers next to the wounded man will also be taken off the battlefield as they tend to their injured brother-in-arms.
There you go. Huntington's Disease proves that nature is a lot like the Russian paramilitary.
This time of year. This miserable, hateful, abhorrent time of year. When every where you turn is a reminder to "celebrate with family". Huntington's Disease has taken both MW and I off the field. Neither of us can maintain relationships now. I have become a human shield protecting MW from the world, allowing nothing in that could possibly upset or confuse her. That includes.... Every fucking thing.
The Russian paramilitary has another motto: "Strike first. Keep striking."
Yup. Huntington's Disease 101. MW isn't even 50 years old yet. I myself ain't even 45. She's ten, maybe fifteen years away from the grave. And, if I keep drinking like this, I may beat her there.
God but I hate the holidays.
Maybe.
It is too depressing to get into - depressing and repetitive - so I won't rehash every little bullshit HD thing that made this holiday season balls (imagined illnesses, sleepless nights, terrifying mood swings). Still, perhaps a little elevated from last year because during one of MW's horrific rants about how bad of a person I am - she asked me to go drop a gift off at the neighbors. They weren't home. When I came back she accused me of not even trying to give the gift. This set her off for a few hours of an absolutely vicious and vitriolic diatribe against me. And, yes, she became physically violent. Nothing I couldn't handle, but then, I'm a big guy - anyway, in the course of shearing me down one side then the other, MW mentioned that - if this was how I'd treat her when she asked for a simple thing like delivering a gift - how bad will I treat her when she really does get sick and need help.
Huh?
Headlights. Deer.
Is this a sign of self-awareness? Should I take the moment to suggest seeking help?
Of course I didn't. The tempest raged awhile longer then subsided. And I was able to drink my decision to make no decision away. Status quo retained through liberal application of wine and vodka. Oh, yes, of course that combination makes me sick.
Eh. I deserve it.
There is a particularly cruel philosophy of war that it is better to wound an enemy soldier than to kill him. Because the soldiers next to the wounded man will also be taken off the battlefield as they tend to their injured brother-in-arms.
There you go. Huntington's Disease proves that nature is a lot like the Russian paramilitary.
This time of year. This miserable, hateful, abhorrent time of year. When every where you turn is a reminder to "celebrate with family". Huntington's Disease has taken both MW and I off the field. Neither of us can maintain relationships now. I have become a human shield protecting MW from the world, allowing nothing in that could possibly upset or confuse her. That includes.... Every fucking thing.
The Russian paramilitary has another motto: "Strike first. Keep striking."
Yup. Huntington's Disease 101. MW isn't even 50 years old yet. I myself ain't even 45. She's ten, maybe fifteen years away from the grave. And, if I keep drinking like this, I may beat her there.
God but I hate the holidays.
Saturday, December 19, 2015
2015.12.19
The music is so loud it hurts.
This is what I do when MW is out of the house. I can't stand to be alone, in silence. Also, I'm kind of drunk. That helps too. It is a necessity.
Tommy Conwell. Half a heart. For the record.
Okay, so we'll try this. MW will be back in less than 30 minutes so I have to make this quick and I can't get bogged down with the pride of correct spelling, grammar, decency, relevancy or intelligence.
I'm drunk. The song just changed to Jimmy Page's The Only One. With Robert Plant helping out.
Why am I even here?
Two night ago, I took in a snoot-full. It was an ill-advised drunk. I knew I shouldn't do it. Here's what happened; normally I cut a big tumbler in half: gin or vodka and seltzer. I sip that all evening while being a dutiful care taker to an HD victim who has no fucking clue. None. Does not even realize. Totally oblivious. Oh, her quiver is full or arrows: "this seems wrong, that seems wrong, is something wrong? why am I like this, why did this happen that way? am I sick? am I okay?" Everything is, according to me, fine. Absolutely fine. You are fine. The situation is normal. Please, sit. Watch TV. I'll cook, clean. Everything is fine.
I am a fleshing, boozy shield against the reality of HD.
Two night ago I took in too many arrows and sprung a leak.
It started in the morning when MW called me at work. She tripped over her own feet while walking at the mall and wanted to know if that was a symptom of "HT" as she calls it. What? No. Of course not. I trip over my feet all the time. Hell, you've seen me trip over my feet. I'm one clumsy mofo. You're fine. Nothing to worry about. Nothing at all.
John Lee Hooker now. I Want To Hug You.
I started drinking while at work. I've a bottle of cheap rotgut which I cut into a cup of coffee. You don't fucking judge me; what would you do? You're wife has been calling all morning, worried she has Huntington's Disease and you LIE TO HER. You LIE. ALL THE TIME. You don't know what else to do. And you drink. Whenever, whatever you can. Because.... just because.
Anyway, when I finally made it home that night, it was already pretty late. Fortunately, the tripping incident had, by that time, been pretty much forgotten. Of course, that just meant moving on to other worries. Was she getting a cold? Would she be able to sleep? What about Donald Trump? He's going to be president, you know.
Oh God. I filled my trusty tumbler 3/4th full of Gin that night.
John Hiatt. Everybody Went Low.
MW was on a tear that evening. Along with the usual worries, she was scheduled to be at work the next day. She hadn't been to work in two weeks. She was nearly panicked from the prospect of being around people again.
She bustled around the house; cleaning, fussing. It took forever to get her settled down enough to sit in bed and turn on the TV. I hadn't even had a chance to drink much, so I had to really make up for lost time. I guzzled the tumbler toot sweet. I had to. It was time to brush my teeth and rinse. I rely on the rinse to mask the booze, so I had to.
Anyway, when I settled in with MW, she kept on talking about stuff and, God help me, I replied. But.... heh... I was slurring.
MW noticed. She became convinced I was stroking out.
Beat Farmers. California Kid.
Have you ever tried to sober up, like, NOW? It ain't easy. I'm biting my cheek, biting my tongue. Trying so hard to speak around the mush in my mouth.
Anyway, pile this upon the pile of lies. I was eventually able to convince MW that I was just congested.
Okay. Have to go now and get ready. MW will be home soon. Have to start cooking and cleaning. One more song before I go. Georgia Satellites, Bring Down The Hammer.
This is what I do when MW is out of the house. I can't stand to be alone, in silence. Also, I'm kind of drunk. That helps too. It is a necessity.
Tommy Conwell. Half a heart. For the record.
Okay, so we'll try this. MW will be back in less than 30 minutes so I have to make this quick and I can't get bogged down with the pride of correct spelling, grammar, decency, relevancy or intelligence.
I'm drunk. The song just changed to Jimmy Page's The Only One. With Robert Plant helping out.
Why am I even here?
Two night ago, I took in a snoot-full. It was an ill-advised drunk. I knew I shouldn't do it. Here's what happened; normally I cut a big tumbler in half: gin or vodka and seltzer. I sip that all evening while being a dutiful care taker to an HD victim who has no fucking clue. None. Does not even realize. Totally oblivious. Oh, her quiver is full or arrows: "this seems wrong, that seems wrong, is something wrong? why am I like this, why did this happen that way? am I sick? am I okay?" Everything is, according to me, fine. Absolutely fine. You are fine. The situation is normal. Please, sit. Watch TV. I'll cook, clean. Everything is fine.
I am a fleshing, boozy shield against the reality of HD.
Two night ago I took in too many arrows and sprung a leak.
It started in the morning when MW called me at work. She tripped over her own feet while walking at the mall and wanted to know if that was a symptom of "HT" as she calls it. What? No. Of course not. I trip over my feet all the time. Hell, you've seen me trip over my feet. I'm one clumsy mofo. You're fine. Nothing to worry about. Nothing at all.
John Lee Hooker now. I Want To Hug You.
I started drinking while at work. I've a bottle of cheap rotgut which I cut into a cup of coffee. You don't fucking judge me; what would you do? You're wife has been calling all morning, worried she has Huntington's Disease and you LIE TO HER. You LIE. ALL THE TIME. You don't know what else to do. And you drink. Whenever, whatever you can. Because.... just because.
Anyway, when I finally made it home that night, it was already pretty late. Fortunately, the tripping incident had, by that time, been pretty much forgotten. Of course, that just meant moving on to other worries. Was she getting a cold? Would she be able to sleep? What about Donald Trump? He's going to be president, you know.
Oh God. I filled my trusty tumbler 3/4th full of Gin that night.
John Hiatt. Everybody Went Low.
MW was on a tear that evening. Along with the usual worries, she was scheduled to be at work the next day. She hadn't been to work in two weeks. She was nearly panicked from the prospect of being around people again.
She bustled around the house; cleaning, fussing. It took forever to get her settled down enough to sit in bed and turn on the TV. I hadn't even had a chance to drink much, so I had to really make up for lost time. I guzzled the tumbler toot sweet. I had to. It was time to brush my teeth and rinse. I rely on the rinse to mask the booze, so I had to.
Anyway, when I settled in with MW, she kept on talking about stuff and, God help me, I replied. But.... heh... I was slurring.
MW noticed. She became convinced I was stroking out.
Beat Farmers. California Kid.
Have you ever tried to sober up, like, NOW? It ain't easy. I'm biting my cheek, biting my tongue. Trying so hard to speak around the mush in my mouth.
Anyway, pile this upon the pile of lies. I was eventually able to convince MW that I was just congested.
Okay. Have to go now and get ready. MW will be home soon. Have to start cooking and cleaning. One more song before I go. Georgia Satellites, Bring Down The Hammer.
Tuesday, December 1, 2015
2015.12.01
One down.
Thanksgiving was touch and go, but we made it. Next up: Christmas. Fucking Christmas. Worst Goddamned day of the year. And then, though it usually isn't too much an ordeal, we can't just dismiss New Year's Day out of hand. That can be a treacherous holiday as well.
How I hate this time of year.
Thanksgiving.... We were invited to a friend's house, but MW decided to skip it because there would be little children around and, yes, kids cause colds! She couldn't risk getting sick so we didn't go anywhere or do anything, except to the Indian restaurant to get food for her dad, and that's when things got tricky.
As we're walking out, we bump into two of MW's old friends. It has been years since we've seen them, so we stand around chatting for awhile and one of them makes a comment that MW has lost weight.
Oh fuck.
After we part ways, that's all MW can think about - has she lost weight? Why has she lost weight? Is she sick? Does she have cancer? Will she be able to sleep worried about her drastic weight loss?
Fortunately, in the years since we'd seen them, one of those friends had actually gained a lot of weight. A gross amount of weight. So much so that I was able to convince MW that a) they hadn't seen her in three years so they wouldn't really remember how much she weight and b) he'd gotten so fat, everybody must look thinner to him anyway.
That worked pretty good, actually, and even though she did spend much of the day complaining about the unreasonable expectations of the holidays, it wasn't anything that kept her up all night or caused her to go completely off the rails.
When I was dropping the food off at her dad's (MW stayed in the car - still hasn't seen or spoken with her dad in just shy of three years) her brother came out of his room to say "hi" to me as I was leaving. That was unusual - he normally avoids me. Then I get an email from him asking if I could proof read his book. Again.
Jesus. What a family!
Oh, and her cousin called and left a message yesterday. This is the big shot psychiatrist cousin who really should know better. He knows MW is at risk for HD, knows she is of age, knows she is acting erratically, but has never offered anything more substantial than criticism on how she lives. Anyway, I called him back mostly to prevent him from leaving more messages that might upset MW. He asked how she was doing, I said "fine". He asked if she was talking to any of her family and I said, "well, she's still working through some things." We exchanged more pleasantries and hung up.
Hopefully he got the hint and won't call again. Based on how he treated MW last time we were together, I wouldn't trust that motherfucker as far as I could throw him. And he's fat too.
Thanksgiving is behind us. Christmas on the horizon. It'll be hard, I know, but hopefully we can see it through. I am drinking again, so that helps.
Thanksgiving was touch and go, but we made it. Next up: Christmas. Fucking Christmas. Worst Goddamned day of the year. And then, though it usually isn't too much an ordeal, we can't just dismiss New Year's Day out of hand. That can be a treacherous holiday as well.
How I hate this time of year.
Thanksgiving.... We were invited to a friend's house, but MW decided to skip it because there would be little children around and, yes, kids cause colds! She couldn't risk getting sick so we didn't go anywhere or do anything, except to the Indian restaurant to get food for her dad, and that's when things got tricky.
As we're walking out, we bump into two of MW's old friends. It has been years since we've seen them, so we stand around chatting for awhile and one of them makes a comment that MW has lost weight.
Oh fuck.
After we part ways, that's all MW can think about - has she lost weight? Why has she lost weight? Is she sick? Does she have cancer? Will she be able to sleep worried about her drastic weight loss?
Fortunately, in the years since we'd seen them, one of those friends had actually gained a lot of weight. A gross amount of weight. So much so that I was able to convince MW that a) they hadn't seen her in three years so they wouldn't really remember how much she weight and b) he'd gotten so fat, everybody must look thinner to him anyway.
That worked pretty good, actually, and even though she did spend much of the day complaining about the unreasonable expectations of the holidays, it wasn't anything that kept her up all night or caused her to go completely off the rails.
When I was dropping the food off at her dad's (MW stayed in the car - still hasn't seen or spoken with her dad in just shy of three years) her brother came out of his room to say "hi" to me as I was leaving. That was unusual - he normally avoids me. Then I get an email from him asking if I could proof read his book. Again.
Jesus. What a family!
Oh, and her cousin called and left a message yesterday. This is the big shot psychiatrist cousin who really should know better. He knows MW is at risk for HD, knows she is of age, knows she is acting erratically, but has never offered anything more substantial than criticism on how she lives. Anyway, I called him back mostly to prevent him from leaving more messages that might upset MW. He asked how she was doing, I said "fine". He asked if she was talking to any of her family and I said, "well, she's still working through some things." We exchanged more pleasantries and hung up.
Hopefully he got the hint and won't call again. Based on how he treated MW last time we were together, I wouldn't trust that motherfucker as far as I could throw him. And he's fat too.
Thanksgiving is behind us. Christmas on the horizon. It'll be hard, I know, but hopefully we can see it through. I am drinking again, so that helps.
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