I get a few hours away from the grind. I drink. I blog.
I'm listing to "Church of the Holy Spook" cranked to 11 and feeling like shit.
I have to cap the bottle soon. That is depressing as all hell.
I'm not a good man. I'm not holy. I've never once even tried to walk in Jesus' footprints.
But I've never done anything evil. Not truly evil. Careless? Reckless, even? Thoughtless? Sure! Yes. I've been bad. Many times I've acted without regard for the health of my soul (whatever that is) and I'm still constantly fucking up everything... just, everything.
I'm not good.
But. Godamnit. I'm not bad either.
I've never once deliberately gone out and harmed anybody or anything. Oh sure, I've notched plenty of sins of omission and fits of passionate rage in my belt. Still, I've never made a decision - or at least I cannot remember (drunk as I am) ever made a conscious effort to fuck anybody. I've never acted with hostility or malice.
Nor, I must say, have I ever done anything to help anybody that would cause me undue discomfort.
I'm middle of the road right down the line.
Except, of course, MW.
I've given my life to MW. Everything to her. Hoping against hope that it would pay off in the end.
It hasn't. It won't. It's just getting worse. And it will not, can not, get better.
I'm exhausted. I've sacrificed damned near everything I have except the blood from my veins. And every day I get to look into the abyss and see that it is still hungry.
Demanding to be fed.
Sunday, February 7, 2016
Saturday, February 6, 2016
2016.02.06
Yet another from the files of "...an HD thing; you wouldn't understand."
It takes MW fifteen minutes to brush her teeth. What it is, you see, is an abiding fear of sugar. And chemicals. And chemicals that effect sugar. Anyway, she can't use toothpaste because of the sweetener, so she buys an organic mouthwash; pours a dash in a cap, dips in her toothbrush and goes to town. However, even though it is organic, it is still somewhat sweet to taste, so after every brush she crams a fistful of toilette paper in her mouth and rubs it around to absorb the "sweet". And she rinses and spits a lot as well. A time consuming endeavor.
Yesterday morning she spat and - lo! - mixed in with the mucus and saliva was a tinge of red. Blood? BLOOD! MW fell into an absolute panic.
"I'm going to die. That's it," she kept saying. "I'm going to die."
Let's take a break in this narration and travel back in time; twenty years ago when MW's mother was first diagnosed with HD. One of my mother-in-law's constant complaints was a fear of cancer. She wouldn't go five minutes without slurring out the word "Cancer! Cancer, mully. Cancer!"
You can only reassure someone so often before patience departs and you're left with hostility. As an example, MW used to tell her mother - after spending the better part of a day explaining to the lady that she did NOT have cancer - that she would, in fact, be "lucky" to have cancer. That cancer would be a lot better than what she has.
Cruel, yes. But it was a cruel household into which I married. Although one suffers to stand by and be silently complacent in such base inhumanity, tales told of the abuse and neglect under MW's father's roof kept my tongue still. I may have told MW to calm down - I recall I was frequently trying to calm her down in those days - but I never forbade her from telling her mother how much better off she'd be with the big C.
Fast forward a couple decades and here we are again. MW has cancer. She has cancer. Cancer! Cancer, mully. Cancer! Over and over again.
And, God help me, in my mind.... In my mind. In my mind I say, "Yeah, you should be so lucky."
Of course I don't. No, I use my usual trick - Oh, I always cough up blood. Happens to me all the time. Look, if you want, I could cough up blood right now. See, what happens is, when the weather changes your nasal passages dry out and, well, there can be blood in your mucus. Did you want me to cough blood now? I can, you know. I cough blood all the time.
Had she asked me to, I'd've bit my inner cheek and spat blood. Easy.
Eh, not so easy. You remember that show Homicide? Where they would get a suspect in the box and trip up his testimony with an endless barrage of contradictory questions? Well Andre Brougher's got nothing on MW. I get a phone call from her while I'm at work and for thirty minutes I'm sweating under the hot lights:
When was the last time you spat blood?
Pretty much every day when I sneeze there's some blood there.
But that's when you sneeze.
Right.
What about when you spit?
Well, it's all connected.
When was the last time you spat blood?
Oh, I don't know.
Five years ago? Last year?
I can't.... I can't. I don't normally spit. I normally sneeze.
So how can you say you always spit blood?
I.... It's all connected, you see. The nasal cavity....
So you don't always spit blood?
It's an HD thing.
It takes MW fifteen minutes to brush her teeth. What it is, you see, is an abiding fear of sugar. And chemicals. And chemicals that effect sugar. Anyway, she can't use toothpaste because of the sweetener, so she buys an organic mouthwash; pours a dash in a cap, dips in her toothbrush and goes to town. However, even though it is organic, it is still somewhat sweet to taste, so after every brush she crams a fistful of toilette paper in her mouth and rubs it around to absorb the "sweet". And she rinses and spits a lot as well. A time consuming endeavor.
Yesterday morning she spat and - lo! - mixed in with the mucus and saliva was a tinge of red. Blood? BLOOD! MW fell into an absolute panic.
"I'm going to die. That's it," she kept saying. "I'm going to die."
Let's take a break in this narration and travel back in time; twenty years ago when MW's mother was first diagnosed with HD. One of my mother-in-law's constant complaints was a fear of cancer. She wouldn't go five minutes without slurring out the word "Cancer! Cancer, mully. Cancer!"
You can only reassure someone so often before patience departs and you're left with hostility. As an example, MW used to tell her mother - after spending the better part of a day explaining to the lady that she did NOT have cancer - that she would, in fact, be "lucky" to have cancer. That cancer would be a lot better than what she has.
Cruel, yes. But it was a cruel household into which I married. Although one suffers to stand by and be silently complacent in such base inhumanity, tales told of the abuse and neglect under MW's father's roof kept my tongue still. I may have told MW to calm down - I recall I was frequently trying to calm her down in those days - but I never forbade her from telling her mother how much better off she'd be with the big C.
Fast forward a couple decades and here we are again. MW has cancer. She has cancer. Cancer! Cancer, mully. Cancer! Over and over again.
And, God help me, in my mind.... In my mind. In my mind I say, "Yeah, you should be so lucky."
Of course I don't. No, I use my usual trick - Oh, I always cough up blood. Happens to me all the time. Look, if you want, I could cough up blood right now. See, what happens is, when the weather changes your nasal passages dry out and, well, there can be blood in your mucus. Did you want me to cough blood now? I can, you know. I cough blood all the time.
Had she asked me to, I'd've bit my inner cheek and spat blood. Easy.
Eh, not so easy. You remember that show Homicide? Where they would get a suspect in the box and trip up his testimony with an endless barrage of contradictory questions? Well Andre Brougher's got nothing on MW. I get a phone call from her while I'm at work and for thirty minutes I'm sweating under the hot lights:
When was the last time you spat blood?
Pretty much every day when I sneeze there's some blood there.
But that's when you sneeze.
Right.
What about when you spit?
Well, it's all connected.
When was the last time you spat blood?
Oh, I don't know.
Five years ago? Last year?
I can't.... I can't. I don't normally spit. I normally sneeze.
So how can you say you always spit blood?
I.... It's all connected, you see. The nasal cavity....
So you don't always spit blood?
It's an HD thing.
Wednesday, February 3, 2016
2016.02.03
So our dog died. Specifically, we had the vet put her to sleep. She was thirteen years old, diabetic, blind, had cancer tumors all over her belly, bladder stones, a UTI, had turned her back on God, and couldn't eat any more because of ketosis - or so the vet said after having spent three days and close to $4,000 keeping the poor thing alive on two IVs stuck in her little paws. At that point, the vet also said euthanization would be a "reasonable" decision.
What a clear-eyed assessment of the situation.
Of course, as the dog had been MW's only constant companion for these last thirteen years, it was a ridiculously hard decision for her to make. Understandable. Now let's run those emotions through the filter of early onset dementia caused by HD and you're set up for some good times. At the vets office, it was almost a comedy routine with MW handing the dog over, then snatching it back; handing it over, snatching it back.... Eventually I gently, but firmly, dragged MW from the room - sobbing uncontrollably.
Right, I know, that's not abnormal behavior. Losing a beloved pet is hard. This happened at an emergency pet hospital (hence the high, high price tag) so we saw lots of weeping people biding their four-legged companions a bitter last farewell. I don't fault MW at all for that.
It's what happened next that is costing a heavy toll.
We gave our dog peace on Saturday morning. MW immediately got on the Internet, found a breeder in Dallas, and arraigned to go pick up another dog. I advised against it; explaining that we needed grieving time, but really just trying to buy more time to get the house back in order after having lost those three days of maintenance to the doggie death watch. No joy. She had to get a dog. We had to drive to Dallas. Four hours there; four hours back.
MW spent those 8 hours on the road fluctuating between wailing tears and talking about the mysteries of death. She talked a lot about her mom - her father having had made a similar decision to pull the plug and euthanize mummy after she contracted HD's favorite killer, pneumonia - and how unfair death was. She started in on how much her mother had wanted to live and how she would never have done what her father did. She informed me that I should do everything in my power to keep her alive no matter what. Oh, and also? I should never put her in a nursing home. She would hate that.
She asked me what I thought about it and I side stepped the issue. What she doesn't know is that I've already drawn up a Medical Power of Attorney, give that responsibility to my brother; then sister (not MW) and explicitly specified NO RESUSCITATION! WITHHOLD ALL LIFESAVING MEASURES! I'm looking for death with dignity even it it's just a goddamned hang nail.
Or a hernia. Driving four hours straight, no breaks, played holy hell on my hernia. Gave me a righteous headache too. MW drove some of the way back, but I insisted on taking over when she started bursting into tears going 80 down I-45. All in all, a very painful experience.
And at the end of all this? We now have a new puppy! Yay!
Except not so much yay. Puppies are a lot of work under the best conditions. Now put a puppy in an HD house where the dementia is making itself known primarily through hypochondria and germaphobia. Since Saturday I've lost five pounds and haven't had anything to drink. I suppose the not drinking might be a good thing, but the weight loss is pure stress and sleeplessness.
The puppy is a teacup MalteePoo. Smaller than my foot. But I'm not allowed to pick it up from under it's belly because I might get pee on my hand. The puppy can never be left unattended on the floor because it might pee somewhere. Also, it might eat something bad that MW has dropped on the floor. (MW is always dropping things on the floor. She knows this; hence the rule about the dog's paws never touching our floor. You might ask why she doesn't just pick whatever it is up when she dropped it.... It would be a good question.) When we're not directly supervising the puppy, he must always be either in its kennel or playpen. The puppy, naturally, doesn't like this so it whines constantly. CONSTANTLY! Not one moment of peace in the house since Saturday night.
Puppies have accidents. Every time our puppy has an accident, something expensive get thrown away - a carrying case; a blanket, a towel. Whatever got pee on it. Pee can't be cleaned, you know. It has to be destroyed! You may ask why we don't use those pee pads? Well I suggested it; but those are no good. They just allow for the pee filth and germs to have a home. No. We have to use blankets and towels and they have to be thrown away with prejudice once contaminated.
And this is just a sample of the germaphobia. Let's briefly touch on the hypochondria, shall we? Since the puppy has been in our house, MW has been anxious about catching ringworm, tapeworms, and that one disease dogs can get that they pass on to humans (I have no idea what this could be, but MW knows what it is; she just doesn't know the name of it).
Here's a sample of how it has been around Casa Muncie these last five days:
I'm sitting outside with the dog. This, I admit, is good. Weather is fine this time of year and it is always fun watching a puppy romp - catch leaves, tugging flip-flops twice his size around the yard, getting in fights with pill bugs and losing because he's so small.... Then MW calls for me to do something in the house. I pick up the dog and go in. NO! I can't hold the dog! Now I have pee on my hands! So I try to put the dog in his playpen. NO! The playpen is wet because the dog spilled water! So I try to use my free hand clean up the water. NO! If the dog stepped on pee earlier, the water in the playpen is full of pee, too! I'll have to use a glove. But I can't put on gloves while holding the dog; and I can't set the dog down, so I'm stuck. Then, angry, MW comes over to clean the playpen. Finally I can set the dog down. Once down, the dog immediately starts whining, loud. So loud, I can't hear MW as she continues to ask me to do things as she's storming around the house. I follow, asking questions, which just pisses her off more. She's yelling, the dog's whining, the house is in shambles because I haven't been able to clean anything. On and on.
I'm exhausted; even more so than usual. The only thing I can do is constantly remind myself that this will, most likely, be MW's last dog. Have to make the best of it.
What a clear-eyed assessment of the situation.
Of course, as the dog had been MW's only constant companion for these last thirteen years, it was a ridiculously hard decision for her to make. Understandable. Now let's run those emotions through the filter of early onset dementia caused by HD and you're set up for some good times. At the vets office, it was almost a comedy routine with MW handing the dog over, then snatching it back; handing it over, snatching it back.... Eventually I gently, but firmly, dragged MW from the room - sobbing uncontrollably.
Right, I know, that's not abnormal behavior. Losing a beloved pet is hard. This happened at an emergency pet hospital (hence the high, high price tag) so we saw lots of weeping people biding their four-legged companions a bitter last farewell. I don't fault MW at all for that.
It's what happened next that is costing a heavy toll.
We gave our dog peace on Saturday morning. MW immediately got on the Internet, found a breeder in Dallas, and arraigned to go pick up another dog. I advised against it; explaining that we needed grieving time, but really just trying to buy more time to get the house back in order after having lost those three days of maintenance to the doggie death watch. No joy. She had to get a dog. We had to drive to Dallas. Four hours there; four hours back.
MW spent those 8 hours on the road fluctuating between wailing tears and talking about the mysteries of death. She talked a lot about her mom - her father having had made a similar decision to pull the plug and euthanize mummy after she contracted HD's favorite killer, pneumonia - and how unfair death was. She started in on how much her mother had wanted to live and how she would never have done what her father did. She informed me that I should do everything in my power to keep her alive no matter what. Oh, and also? I should never put her in a nursing home. She would hate that.
She asked me what I thought about it and I side stepped the issue. What she doesn't know is that I've already drawn up a Medical Power of Attorney, give that responsibility to my brother; then sister (not MW) and explicitly specified NO RESUSCITATION! WITHHOLD ALL LIFESAVING MEASURES! I'm looking for death with dignity even it it's just a goddamned hang nail.
Or a hernia. Driving four hours straight, no breaks, played holy hell on my hernia. Gave me a righteous headache too. MW drove some of the way back, but I insisted on taking over when she started bursting into tears going 80 down I-45. All in all, a very painful experience.
And at the end of all this? We now have a new puppy! Yay!
Except not so much yay. Puppies are a lot of work under the best conditions. Now put a puppy in an HD house where the dementia is making itself known primarily through hypochondria and germaphobia. Since Saturday I've lost five pounds and haven't had anything to drink. I suppose the not drinking might be a good thing, but the weight loss is pure stress and sleeplessness.
The puppy is a teacup MalteePoo. Smaller than my foot. But I'm not allowed to pick it up from under it's belly because I might get pee on my hand. The puppy can never be left unattended on the floor because it might pee somewhere. Also, it might eat something bad that MW has dropped on the floor. (MW is always dropping things on the floor. She knows this; hence the rule about the dog's paws never touching our floor. You might ask why she doesn't just pick whatever it is up when she dropped it.... It would be a good question.) When we're not directly supervising the puppy, he must always be either in its kennel or playpen. The puppy, naturally, doesn't like this so it whines constantly. CONSTANTLY! Not one moment of peace in the house since Saturday night.
Puppies have accidents. Every time our puppy has an accident, something expensive get thrown away - a carrying case; a blanket, a towel. Whatever got pee on it. Pee can't be cleaned, you know. It has to be destroyed! You may ask why we don't use those pee pads? Well I suggested it; but those are no good. They just allow for the pee filth and germs to have a home. No. We have to use blankets and towels and they have to be thrown away with prejudice once contaminated.
And this is just a sample of the germaphobia. Let's briefly touch on the hypochondria, shall we? Since the puppy has been in our house, MW has been anxious about catching ringworm, tapeworms, and that one disease dogs can get that they pass on to humans (I have no idea what this could be, but MW knows what it is; she just doesn't know the name of it).
Here's a sample of how it has been around Casa Muncie these last five days:
I'm sitting outside with the dog. This, I admit, is good. Weather is fine this time of year and it is always fun watching a puppy romp - catch leaves, tugging flip-flops twice his size around the yard, getting in fights with pill bugs and losing because he's so small.... Then MW calls for me to do something in the house. I pick up the dog and go in. NO! I can't hold the dog! Now I have pee on my hands! So I try to put the dog in his playpen. NO! The playpen is wet because the dog spilled water! So I try to use my free hand clean up the water. NO! If the dog stepped on pee earlier, the water in the playpen is full of pee, too! I'll have to use a glove. But I can't put on gloves while holding the dog; and I can't set the dog down, so I'm stuck. Then, angry, MW comes over to clean the playpen. Finally I can set the dog down. Once down, the dog immediately starts whining, loud. So loud, I can't hear MW as she continues to ask me to do things as she's storming around the house. I follow, asking questions, which just pisses her off more. She's yelling, the dog's whining, the house is in shambles because I haven't been able to clean anything. On and on.
I'm exhausted; even more so than usual. The only thing I can do is constantly remind myself that this will, most likely, be MW's last dog. Have to make the best of it.
Saturday, January 23, 2016
2016.01.23
Seems like death is everywhere these days. David Bowie, Glenn Frey.... Lemmy. Angus Scrimm. So far Roger Waters is still hanging on, even though he's the one who figured out the pros and cons of it all way back in the 80s: "Why prolong the agony? All men must die."
All those listed but Scrimm died in their late 60s; like my dad.
Maybe this is a return to the normal life span. Geezers living to almost 100? What's the fucking point? Seems like we used to die off around 60/70. Makes sense to me.
But then again, for me, that's another, what? Twenty years? Errr.
My sister-in-law has, what appears to be, an inoperable brain tumor. I spend time with her children - my niece and nephew - and they avoid talking about it. Just as I avoid talking about MW's Huntington's Disease. Vague, oblique references to the "uncertain" future. Uncertain.
Fucking DEATH! There. That's the future. What's so uncertain about that? My sister-in-law with a brain tumor? She'll see her son graduate in 2016. Her daughter's 2018 graduation? Toss a coin.
Every time I think I've hit rock bottom, I break through another level. But come on; this has to stop. We've long since gone beyond the testing point - God pushing Job's nose in for giggles - fine. I'm still here, aren't I? And I'm willing to tote the barge for the duration - at least as long as the hull of this alcohol fueled tugboat holds back the water - but my sister-in-law? Unfair. Life? Unfair.
And, just as with my father, I am sick with worry about my sister-in-law's health but, always there in the back of my mind, are the disgusting, guilty thoughts that, hoo boy, if she has to be admitted to a hospital? Or when she dies and we have to go to the funeral? Man, dealing with MW through that is going to be absolute misery.
I wouldn't say I'm drunk now. I'm certainly not sober; but I'm not blind either. MW is out of the house now so I can write without interruption. I should be doing something better than this - pissing and moaning - but I've had a... revelation? No. A theory? No. Not even so deep. Let's call this an observation.
I'm a lapsed Catholic with a hate hard-on for God. Sure, MW has Huntington's Disease so that accounts for it, right? Indeed. But let's be honest - as soon as I left my mother's house and could stop going to church every Sunday - I did stop going to church every Sunday. I slept in. Now I'm the caretaker of a woman who is dying by fractions of inches and I can do absolutely nothing to stop the progression of death as it greys away all life from her skin, her hair, her lips and her mind. Her soul.
My brother is a Lutheran. I know, right? We were raised Catholic and he - heh - became a Lutheran when he married a Lutheran. His wife is dying from a brain tumor. Bad, yes, but it'll be over soon. Relatively soon.
My sister? Oh man, she's doing great! Healthy as an ox - great marriage; two glorious young sons - both righteously successful. College bound. Fantastic people. Rich? Yessir. House in the Austin hill country with nothing but more success on the horizon. Ridiculously perfect life.
Oh, by the way, she's very actively involved in one of those charismatic churches. Yup. One of those "God loves you and you can have everything" cults. Lakewood writ small.
So here's how it pans out, the way I see it now (sure, I'm seeing it through a bottle and a half of cheap red, but it is before my eyes). If you were Catholic but loose all religion (like me!) you are absolutely and unequivocally fucked. Hey, this isn't just me looking at my belly-button with a tear in my eye. Huntington's Disease is acknowledged as the "cruelest" disease known to man. And that's what I earned for turning my back on the church. A lifetime of suffering that is, without hyperbole, just one step north of hell.
My brother actively tossed a middle finger to the church. He became Lutheran! Holy shit! Hammering toilet paper on the cathedral door - the whole nine yards. For this he will loose his wife during the prime of their lives. Bullshit. God? Bullshit.
Now my sister. A charismatic church? That kumbayah hold hands and drop 10% in the collection plate scam? And for this she is rewarded with wealth and health and blessings beyond most people's dreams?
Hey God? Good one.
All those listed but Scrimm died in their late 60s; like my dad.
Maybe this is a return to the normal life span. Geezers living to almost 100? What's the fucking point? Seems like we used to die off around 60/70. Makes sense to me.
But then again, for me, that's another, what? Twenty years? Errr.
My sister-in-law has, what appears to be, an inoperable brain tumor. I spend time with her children - my niece and nephew - and they avoid talking about it. Just as I avoid talking about MW's Huntington's Disease. Vague, oblique references to the "uncertain" future. Uncertain.
Fucking DEATH! There. That's the future. What's so uncertain about that? My sister-in-law with a brain tumor? She'll see her son graduate in 2016. Her daughter's 2018 graduation? Toss a coin.
Every time I think I've hit rock bottom, I break through another level. But come on; this has to stop. We've long since gone beyond the testing point - God pushing Job's nose in for giggles - fine. I'm still here, aren't I? And I'm willing to tote the barge for the duration - at least as long as the hull of this alcohol fueled tugboat holds back the water - but my sister-in-law? Unfair. Life? Unfair.
And, just as with my father, I am sick with worry about my sister-in-law's health but, always there in the back of my mind, are the disgusting, guilty thoughts that, hoo boy, if she has to be admitted to a hospital? Or when she dies and we have to go to the funeral? Man, dealing with MW through that is going to be absolute misery.
I wouldn't say I'm drunk now. I'm certainly not sober; but I'm not blind either. MW is out of the house now so I can write without interruption. I should be doing something better than this - pissing and moaning - but I've had a... revelation? No. A theory? No. Not even so deep. Let's call this an observation.
I'm a lapsed Catholic with a hate hard-on for God. Sure, MW has Huntington's Disease so that accounts for it, right? Indeed. But let's be honest - as soon as I left my mother's house and could stop going to church every Sunday - I did stop going to church every Sunday. I slept in. Now I'm the caretaker of a woman who is dying by fractions of inches and I can do absolutely nothing to stop the progression of death as it greys away all life from her skin, her hair, her lips and her mind. Her soul.
My brother is a Lutheran. I know, right? We were raised Catholic and he - heh - became a Lutheran when he married a Lutheran. His wife is dying from a brain tumor. Bad, yes, but it'll be over soon. Relatively soon.
My sister? Oh man, she's doing great! Healthy as an ox - great marriage; two glorious young sons - both righteously successful. College bound. Fantastic people. Rich? Yessir. House in the Austin hill country with nothing but more success on the horizon. Ridiculously perfect life.
Oh, by the way, she's very actively involved in one of those charismatic churches. Yup. One of those "God loves you and you can have everything" cults. Lakewood writ small.
So here's how it pans out, the way I see it now (sure, I'm seeing it through a bottle and a half of cheap red, but it is before my eyes). If you were Catholic but loose all religion (like me!) you are absolutely and unequivocally fucked. Hey, this isn't just me looking at my belly-button with a tear in my eye. Huntington's Disease is acknowledged as the "cruelest" disease known to man. And that's what I earned for turning my back on the church. A lifetime of suffering that is, without hyperbole, just one step north of hell.
My brother actively tossed a middle finger to the church. He became Lutheran! Holy shit! Hammering toilet paper on the cathedral door - the whole nine yards. For this he will loose his wife during the prime of their lives. Bullshit. God? Bullshit.
Now my sister. A charismatic church? That kumbayah hold hands and drop 10% in the collection plate scam? And for this she is rewarded with wealth and health and blessings beyond most people's dreams?
Hey God? Good one.
Saturday, January 16, 2016
2016.01.16
Hey now, I'm still here.
Two weeks into the new year and I'm still hanging around.
Turns out all I needed to do was start drinking the hard stuff again. Wine? Wasn't cutting it. I now use wine as a stop-gap until I can get real drink. That seems to be helping. Pour enough of the red on my heart and it keeps Ginger Baker away until I can wrap my lips around the real stuff.
Also, I've decided on vodka. Exclusively. Used to be I'd ping pong around gin, V. and whiskey, but I wised up and settled on just the one. The flying V. Gin caused too much sickness, whiskey only seemed to exacerbate my health problems, but good king V.? That's the stuff there. Sure, it causes wicked nightmares, but at least they're interesting. Plus, when I wake up in a sweat from some seriously FUCKED UP dream, and my heart is playing 1812 overture against my chest, I can pretend it is only anxiety. Nothing more.
Yeah, I'm good.
What about MW? How's that going?
Ehhhhhhhh. Okay, I guess. She's about to either quit or get fired from her job because she's been making a lot of mistakes lately. That'll be... bad.
Also, the house has become an absolute wreck. She refuses to clean; nor will she let me clean. Well, why don't I just "sneak clean"? Do some scrubbing while she's asleep or otherwise unaware? What the fuck? Am I so goddamned lazy I'm using my wife's Huntington's Disease as an excuse to live like a pig?
Ah-ha. See there? You don't know what it's like. You have no clue.
I tried. Of course I tried. But when MW noticed a clean floor when she'd left a dirty floor, an explanation was demanded. Um.... Wind? A freak wind blew through the house? Cleaned... the floor?
I'm pretty good at floating bullshit past my MW, but that's a non-starter. No. She caught me in the act and there was hell to pay. So I can't clean; she won't clean, and the house is falling apart.
A better example? The toilette bowls. I just had to take a day off work and spend $600 to replace two functional but dirty toilette bowls. MW wouldn’t clean them; wouldn’t let me clean them, but couldn’t live with them anymore. So she hired a plumber. But she was too embarrassed to be in the house when they came to replace the dirty utilities, so I had to stay home from work. Of course, she didn’t trust either me or the plumber to make sure the work was done correctly, so she was home too; hiding in the sitting room behind a curtain of tacked up blankets. She poked her head around the curtain a few times to give instructions; mostly about where the plumber should be allowed to walk – confusing the hell out of the poor guy – but the job eventually got done. The only positive about this situation is, because the toilets are new, I can probably get away with cleaning them on the down low every week or so without MW noticing.
Anyway, the upshot of all this? MW is looking to buy a new house. Makes sense. This house is dirty; we need to buy a new one.
Fuck yes. Why not? I'm all on board. Talking to real estate agents; driving around looking for good neighborhoods.... Sure, it'll deplete all our savings and put us back in an economic hole, but so what? We’re not going to live forever – why not act stupid now? It might be the last time we have to make such a serious mistake. After this, all our mistakes will be made for us.
The only good break in this situation is that, because I haven’t had a credit card in ten years, I’ve no credit and can’t get a load. Ha! I had to apply for a credit card and, am told by the bank, must make three month’s payments before I can try again to get a loan. So. That gives me three more months of drinking and grinning before I have to sign papers that’ll wipe out any hope I’ve ever had of financial security.
More than that – one of MW’s new home demands is that it be a one-story house. Somehow, someway, she understands that navigating a flight of stairs is now or will soon become… troublesome.
Who knows? Dwight Yoakum told me this drinkin’ will kill me…. Maybe I’ll get lucky before April.
Does this require more of an explanation? Those unfamiliar with the disease may think so. If all you know about Huntington ’s disease is from TV, then probably. On TV it is like a silver bullet of sickness. Terrible stuff, but –in one way or the other - resolved in 45 minutes (thank God). Maybe a season or two (I’m looking at you, House), but otherwise…. Bullshit. No, HD is a lifetime of suffering. And, depending upon circumstances, more than one lives are dragged down into the marsh of dementia. I drink a lot to prevent these thoughts, but oh thank God we never had children. It is just me, I alone, dealing with this. I’ve even isolated MW from her terrible, terrible family so they don’t have to acknowledge the fact that the next time they’ll see their beloved daughter/sister/cousin will be at her goddamned funeral. I’ve jumped on that grenade. And I’m going to lay here, fifteen, twenty more years before it blows. I and I alone.
So when I bitch about the house being in disorder or how MW is losing her job and those uninitiated wonder why I can’t be more proactive or helpful, my only response is death. Death is the ultimate answer for my ineptitude and folly. If I were to sit MW down, tell her that she’s sick, that she has a terminal disease that, yes, can be “managed” through medication and therapy, but not cured, then where have I put her? I’ve put her right in the fucking grave. I’ve shoveled six feet of dirt on MW’s lovely face and garnished it with a rose of prescription medication.
Remember – we both watched her mother suffer for 15 goddamned, terrible, insufferable, dehumanizing, fantastic, Godless, abhorrent years of the disease. “Hey honey, you have Huntington’s disease! But good news – I’ve just bought a lifetime supply of Depends and Ensure, so… Yummy!”
Making the decision to not tell her? Well, that’s an invitation for chaos to reign over our house. But what the fuck? The house is only myself and the stupid dog. We’ll live or we won’t, who cares?
Two weeks into the new year and I'm still hanging around.
Turns out all I needed to do was start drinking the hard stuff again. Wine? Wasn't cutting it. I now use wine as a stop-gap until I can get real drink. That seems to be helping. Pour enough of the red on my heart and it keeps Ginger Baker away until I can wrap my lips around the real stuff.
Also, I've decided on vodka. Exclusively. Used to be I'd ping pong around gin, V. and whiskey, but I wised up and settled on just the one. The flying V. Gin caused too much sickness, whiskey only seemed to exacerbate my health problems, but good king V.? That's the stuff there. Sure, it causes wicked nightmares, but at least they're interesting. Plus, when I wake up in a sweat from some seriously FUCKED UP dream, and my heart is playing 1812 overture against my chest, I can pretend it is only anxiety. Nothing more.
Yeah, I'm good.
What about MW? How's that going?
Ehhhhhhhh. Okay, I guess. She's about to either quit or get fired from her job because she's been making a lot of mistakes lately. That'll be... bad.
Also, the house has become an absolute wreck. She refuses to clean; nor will she let me clean. Well, why don't I just "sneak clean"? Do some scrubbing while she's asleep or otherwise unaware? What the fuck? Am I so goddamned lazy I'm using my wife's Huntington's Disease as an excuse to live like a pig?
Ah-ha. See there? You don't know what it's like. You have no clue.
I tried. Of course I tried. But when MW noticed a clean floor when she'd left a dirty floor, an explanation was demanded. Um.... Wind? A freak wind blew through the house? Cleaned... the floor?
I'm pretty good at floating bullshit past my MW, but that's a non-starter. No. She caught me in the act and there was hell to pay. So I can't clean; she won't clean, and the house is falling apart.
A better example? The toilette bowls. I just had to take a day off work and spend $600 to replace two functional but dirty toilette bowls. MW wouldn’t clean them; wouldn’t let me clean them, but couldn’t live with them anymore. So she hired a plumber. But she was too embarrassed to be in the house when they came to replace the dirty utilities, so I had to stay home from work. Of course, she didn’t trust either me or the plumber to make sure the work was done correctly, so she was home too; hiding in the sitting room behind a curtain of tacked up blankets. She poked her head around the curtain a few times to give instructions; mostly about where the plumber should be allowed to walk – confusing the hell out of the poor guy – but the job eventually got done. The only positive about this situation is, because the toilets are new, I can probably get away with cleaning them on the down low every week or so without MW noticing.
Anyway, the upshot of all this? MW is looking to buy a new house. Makes sense. This house is dirty; we need to buy a new one.
Fuck yes. Why not? I'm all on board. Talking to real estate agents; driving around looking for good neighborhoods.... Sure, it'll deplete all our savings and put us back in an economic hole, but so what? We’re not going to live forever – why not act stupid now? It might be the last time we have to make such a serious mistake. After this, all our mistakes will be made for us.
The only good break in this situation is that, because I haven’t had a credit card in ten years, I’ve no credit and can’t get a load. Ha! I had to apply for a credit card and, am told by the bank, must make three month’s payments before I can try again to get a loan. So. That gives me three more months of drinking and grinning before I have to sign papers that’ll wipe out any hope I’ve ever had of financial security.
More than that – one of MW’s new home demands is that it be a one-story house. Somehow, someway, she understands that navigating a flight of stairs is now or will soon become… troublesome.
Who knows? Dwight Yoakum told me this drinkin’ will kill me…. Maybe I’ll get lucky before April.
Does this require more of an explanation? Those unfamiliar with the disease may think so. If all you know about Huntington ’s disease is from TV, then probably. On TV it is like a silver bullet of sickness. Terrible stuff, but –in one way or the other - resolved in 45 minutes (thank God). Maybe a season or two (I’m looking at you, House), but otherwise…. Bullshit. No, HD is a lifetime of suffering. And, depending upon circumstances, more than one lives are dragged down into the marsh of dementia. I drink a lot to prevent these thoughts, but oh thank God we never had children. It is just me, I alone, dealing with this. I’ve even isolated MW from her terrible, terrible family so they don’t have to acknowledge the fact that the next time they’ll see their beloved daughter/sister/cousin will be at her goddamned funeral. I’ve jumped on that grenade. And I’m going to lay here, fifteen, twenty more years before it blows. I and I alone.
So when I bitch about the house being in disorder or how MW is losing her job and those uninitiated wonder why I can’t be more proactive or helpful, my only response is death. Death is the ultimate answer for my ineptitude and folly. If I were to sit MW down, tell her that she’s sick, that she has a terminal disease that, yes, can be “managed” through medication and therapy, but not cured, then where have I put her? I’ve put her right in the fucking grave. I’ve shoveled six feet of dirt on MW’s lovely face and garnished it with a rose of prescription medication.
Remember – we both watched her mother suffer for 15 goddamned, terrible, insufferable, dehumanizing, fantastic, Godless, abhorrent years of the disease. “Hey honey, you have Huntington’s disease! But good news – I’ve just bought a lifetime supply of Depends and Ensure, so… Yummy!”
Making the decision to not tell her? Well, that’s an invitation for chaos to reign over our house. But what the fuck? The house is only myself and the stupid dog. We’ll live or we won’t, who cares?
Saturday, January 9, 2016
2016.01.09
I'm having a real hard time with this.
MW has Huntington's disease, but I'm keeping this fact from
her. In the shadows of my heart, I think she suspects the truth. Every so often
she’ll drop a bomb like – “How will you act when I’m really sick?” or “Would
you take care of me when I’m really sick?”
Like that.
So far I’ve been smart enough to play that noise off and
continue with stat. quo. Smart? Maybe suicidal enough….
Here’s where I’m at:
I’m sick.
I’m not sure if it is a symptom of my enthusiastically
embraced alcoholism, my self-diagnosed hernia, or something more sinister; but
on a daily basis now my heart will pick a random time to start hammering
against my chest and I’ll find myself short of breath. My vision will become
unfocused. I’ll start to sweat just sitting still. Of course this perpetrates a
kind of panic, with me looking for an escape – where will I go to lay down? Can
I get there in time?
But…. Not because I’m worried about dying. I’m not. I just
want to be out of the way. I don’t want to be an inconvenience for anyone. I certainly
don’t want to wind up in a hospital. Rather a morgue.
Look. The only thing keeping me alive now is the fact that
MW can’t function without me. Truthfully, it’s not like she’s doing great with
me. So were I gone?
Better. All around, better.
Probably. Maybe. Who knows? Goddamnit.
One thing is for certain – I can’t just get sick. I can’t
wind up with a health problem that requires any kind of prolonged treatment. I
can’t have a stupid cancer or heart problem. I can’t have surgery – hell, if I
could do that, I’d get this nuisance hernia fixed. No. Nothing that would
require MW to be responsible for the house for anything more than a six or
eight hour period would work.
It’d be better I die. Then she’d have no choice but to have
real, professional people intervene. Not just me fucking everything up all the
time.
So this is the tightrope I’m on – is the sickness where I’m
at now bad enough to knock me off into my reward or is it some survivable
trifle? If I were to stop drinking – ha! – would my heart settle into a
peaceful rhythm? Have I gone beyond that?
Would it make a difference?
Every night lying in bed, aching and miserable, I swear I’ll
never imbibe another ounce. Come morning I’m doing a mental inventory of every
bottle in the house, planning my day. If I knew this would land me in the
hospital, I’d stop. I’d totally stop. I’d be a religious convert. John
Barleycorn must die like he was in a Tarantino movie.
But….
If my drinking will kill me? Like, one moment typing on
the computer; next, gone?
Well. Pass the bottle.
Because at that point MW will be someone else’s problem.
Someone more qualified than I.
I’m a monster. I’m a monster, aren’t I?
Hello?
Wednesday, December 30, 2015
2015.12.30
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.
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.
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