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.
Wednesday, November 25, 2015
2015.11.25
Damn the holidays.
It has been two years since I first became certain that MW has Huntington's Disease. Two years ago I thought it would be only a matter of days, maybe months before, faced with the obvious, she would surrender to the depression and hopelessness and go on some kind of "disability". Not that I ever believed she would actually get tested and treated; rather, she would just quit life and sit at home all day, every day, atrophying. And, subsequently, I would have to quit my job to take care of her.
24 months later and, bless her heart, she is still plugging away. Still working; still getting out of the house. Overall a triumph, I suppose, but it has been exhausting.
HD is my personal Sword of Damocles and I've been shuffling along under that guillotine for so long now, my back is permanently bowed, my guts are weak, and my thoughts are black as pitch. I take it everyday simply because I have no choice. I welcome the aches and pains that rack my body as I lay down at night on the unbidden hope that they might prevent me from ever waking up again. But, inevitably, I do wake. And shuffle along yet another day, one hateful eye glaring up at the blade waiting, waiting, waiting.
Tomorrow is Thanksgiving. My coworkers ask what my big holiday plans are and, of course, I lie. Oh, you know, spending it with family. In reality it'll just be me and MW with nothing to do; nowhere to go, and all I can do is try very hard keep her from sinking into depression caused by the goddamned expectations of these brutal holidays.
It has been two years since I first became certain that MW has Huntington's Disease. Two years ago I thought it would be only a matter of days, maybe months before, faced with the obvious, she would surrender to the depression and hopelessness and go on some kind of "disability". Not that I ever believed she would actually get tested and treated; rather, she would just quit life and sit at home all day, every day, atrophying. And, subsequently, I would have to quit my job to take care of her.
24 months later and, bless her heart, she is still plugging away. Still working; still getting out of the house. Overall a triumph, I suppose, but it has been exhausting.
HD is my personal Sword of Damocles and I've been shuffling along under that guillotine for so long now, my back is permanently bowed, my guts are weak, and my thoughts are black as pitch. I take it everyday simply because I have no choice. I welcome the aches and pains that rack my body as I lay down at night on the unbidden hope that they might prevent me from ever waking up again. But, inevitably, I do wake. And shuffle along yet another day, one hateful eye glaring up at the blade waiting, waiting, waiting.
Tomorrow is Thanksgiving. My coworkers ask what my big holiday plans are and, of course, I lie. Oh, you know, spending it with family. In reality it'll just be me and MW with nothing to do; nowhere to go, and all I can do is try very hard keep her from sinking into depression caused by the goddamned expectations of these brutal holidays.
Wednesday, November 18, 2015
2015.11.18
My dad died. October 10th, 2015. I was not able to visit him before he passed, nor was I able to go to the funeral. How does it happen that one does not go to pay his respects or even bury his own father?
When I told MW he had died, she immediately started making plans to go. She checked what hotels were available, how much flights costs, if there is a Whole Foods in the area, etc.. Then, after awhile, she started talking about the dog - she can't put the dog in a kennel so we have to take her too. And, of course, how will MW eat? Remember, her eating habits are ridiculously strict.
So I suggest that we just not go. Impossible! We have to go. Its my dad, for christsake. After all, family is everything, right?
Turns out that's not right. The disease is more than family. The disease DEFINES family. It will take priority. Every time.
Eventually, after agonizing over it for a day, my wife agrees that it is better we just don't go. It would be too hard to organize everything and besides, we really didn't know my dad anyway, right? He wasn't a big part of our lives.
True. True.
And now he's dead. Tch.
Want more? Okay, you don't get out of going to your father's funeral by saying, "yeah, no, it's not convenient for us right now." I had to explain - as best I could - to the rest of my family why we wouldn't be there. Any ideas how to do that?
Me neither.
I saw a T-shirt on Facebook that read; "It's a Huntington's thing, you wouldn't understand." As hilarious as it is insightful.... Anyway, I had to tell them MW's condition is such that we can't travel. Also, I had to instruct them not to talk to MW about anything. Don't call our house; don't send us letters. If they need to talk to me, call my work number and leave a message.
We are entirely isolated from both sides of the family. Good. Nothing left to do now but wait for the end.
***
Poor dad. Although it is true; he really wasn't part of my life, still.... I miss him. Maybe I just miss the thought of him being there. I would have liked to seen him before he died. Seen my home town. Goddamnit.
***
I gave up drinking when I almost burned the house down; now I have to stop eating too. Okay, not stop eating entirely, but I do have to loose a lot of weight really fast. It has been going on for some time that I've had an ache and swelling down south. Meh. I haven't have the time or inclination to worry about it. Then, shortly after my dad died (of cancer!), the ache intensified and the swelling became cumbersome. So I looked it up on WEBMD and discovered that it is most likely a hernia; and the only thing for it is surgery. Well, shit. I can't do surgery; first of all MW would never be able to deal with it, secondly who would take care of her while I recover? Nope. I'm fucked.
Cancer would have been better. I could have ignored that until it just didn't matter anymore. But a hernia? That's not going to do anything but hurt and break me down. Pretty much every day MW needs me to move stuff around - usually heavy things like mattresses and furniture - because if she's walking around the house and bumps into a side table, that table will need to be moved. And mattresses always need to be rearranged. I do the work of three men around the house; I can't be crippled by a stupid fucking hernia.
But I can't get surgery to fix it either.
What to do?
I go on-line and find about 1,000 websites that confirm it - I need surgery. Ah, but then I find one site that claims you can correct a hernia with meditation, yoga and, if necessary, weight loss. Bob's yer uncle.
So I'm loosing the extra 20 (okay, 30) and stretching whenever I can sneak away from MW long enough. Meditation is bullshit, so that's out, nevertheless, between the diet and exercise, I have noticed some improvement.
When I told MW he had died, she immediately started making plans to go. She checked what hotels were available, how much flights costs, if there is a Whole Foods in the area, etc.. Then, after awhile, she started talking about the dog - she can't put the dog in a kennel so we have to take her too. And, of course, how will MW eat? Remember, her eating habits are ridiculously strict.
So I suggest that we just not go. Impossible! We have to go. Its my dad, for christsake. After all, family is everything, right?
Turns out that's not right. The disease is more than family. The disease DEFINES family. It will take priority. Every time.
Eventually, after agonizing over it for a day, my wife agrees that it is better we just don't go. It would be too hard to organize everything and besides, we really didn't know my dad anyway, right? He wasn't a big part of our lives.
True. True.
And now he's dead. Tch.
Want more? Okay, you don't get out of going to your father's funeral by saying, "yeah, no, it's not convenient for us right now." I had to explain - as best I could - to the rest of my family why we wouldn't be there. Any ideas how to do that?
Me neither.
I saw a T-shirt on Facebook that read; "It's a Huntington's thing, you wouldn't understand." As hilarious as it is insightful.... Anyway, I had to tell them MW's condition is such that we can't travel. Also, I had to instruct them not to talk to MW about anything. Don't call our house; don't send us letters. If they need to talk to me, call my work number and leave a message.
We are entirely isolated from both sides of the family. Good. Nothing left to do now but wait for the end.
***
Poor dad. Although it is true; he really wasn't part of my life, still.... I miss him. Maybe I just miss the thought of him being there. I would have liked to seen him before he died. Seen my home town. Goddamnit.
***
I gave up drinking when I almost burned the house down; now I have to stop eating too. Okay, not stop eating entirely, but I do have to loose a lot of weight really fast. It has been going on for some time that I've had an ache and swelling down south. Meh. I haven't have the time or inclination to worry about it. Then, shortly after my dad died (of cancer!), the ache intensified and the swelling became cumbersome. So I looked it up on WEBMD and discovered that it is most likely a hernia; and the only thing for it is surgery. Well, shit. I can't do surgery; first of all MW would never be able to deal with it, secondly who would take care of her while I recover? Nope. I'm fucked.
Cancer would have been better. I could have ignored that until it just didn't matter anymore. But a hernia? That's not going to do anything but hurt and break me down. Pretty much every day MW needs me to move stuff around - usually heavy things like mattresses and furniture - because if she's walking around the house and bumps into a side table, that table will need to be moved. And mattresses always need to be rearranged. I do the work of three men around the house; I can't be crippled by a stupid fucking hernia.
But I can't get surgery to fix it either.
What to do?
I go on-line and find about 1,000 websites that confirm it - I need surgery. Ah, but then I find one site that claims you can correct a hernia with meditation, yoga and, if necessary, weight loss. Bob's yer uncle.
So I'm loosing the extra 20 (okay, 30) and stretching whenever I can sneak away from MW long enough. Meditation is bullshit, so that's out, nevertheless, between the diet and exercise, I have noticed some improvement.
Wednesday, September 30, 2015
2015.09.30
Something new: MW has started noticing weight loss. Her clothes are looser, her face has slimmed. But her diet hasn't changed. So what's going on!?!? Diabetes? Thyroid.... CANCER?
All day all night, every day every night; MW has become obsessed with the idea that she is loosing weight because of some disease.
And she is. HD. But she can't know that so I lie.
I tell her it is because her metabolism has changed with age. Sure. As you... mature... your body goes through changes. It is common for people to experience weight loss as they approach their 50s. Happens all the time. Nothing to worry about.
Christ. How much longer can I keep this up?
Especially now that I have honest-and-for-true-no-kidding-this-time quit drinking. And this time it'll stick; because a couple of weeks ago I got blind drunk, passed out on the bathroom floor, and almost burned the house down with my lunch on the stove.
I'm in a strange place. I'm not overly concerned with my own health. And I'm not at all certain that I'm even being helpful in my roll as "care giver". Indeed, I can (and have) made very convincing arguments that my efforts to shield MW from Huntington's Disease are misguided, dangerous, detrimental, and cowardly.
She would be in a better place without me. It would be FORCED upon her.
So I pass out drunk cuddled against the toilette bowl, who cares? It's as good a way as any to pass the time, waiting for death. But I can't have the house burn down. I can't be that reckless.
***
My dad has reached the point where the doctors are talking "quality of life" issues with him. He can choose to stop treatment any day now. Knowing him, he will. Can't blame him but FUCK SHIT FUCK!!! How the fuck am I supposed to visit? Or go to a goddamned funeral? I can't leave MW, and I can't conceive travelling with her. It is difficult enough keeping her between the ditches within the confines of our house. MW on the road? Hell no.
Thanks a lot, dad, for dying young.
Well. HD does make monsters of us all.
All day all night, every day every night; MW has become obsessed with the idea that she is loosing weight because of some disease.
And she is. HD. But she can't know that so I lie.
I tell her it is because her metabolism has changed with age. Sure. As you... mature... your body goes through changes. It is common for people to experience weight loss as they approach their 50s. Happens all the time. Nothing to worry about.
Christ. How much longer can I keep this up?
Especially now that I have honest-and-for-true-no-kidding-this-time quit drinking. And this time it'll stick; because a couple of weeks ago I got blind drunk, passed out on the bathroom floor, and almost burned the house down with my lunch on the stove.
I'm in a strange place. I'm not overly concerned with my own health. And I'm not at all certain that I'm even being helpful in my roll as "care giver". Indeed, I can (and have) made very convincing arguments that my efforts to shield MW from Huntington's Disease are misguided, dangerous, detrimental, and cowardly.
She would be in a better place without me. It would be FORCED upon her.
So I pass out drunk cuddled against the toilette bowl, who cares? It's as good a way as any to pass the time, waiting for death. But I can't have the house burn down. I can't be that reckless.
***
My dad has reached the point where the doctors are talking "quality of life" issues with him. He can choose to stop treatment any day now. Knowing him, he will. Can't blame him but FUCK SHIT FUCK!!! How the fuck am I supposed to visit? Or go to a goddamned funeral? I can't leave MW, and I can't conceive travelling with her. It is difficult enough keeping her between the ditches within the confines of our house. MW on the road? Hell no.
Thanks a lot, dad, for dying young.
Well. HD does make monsters of us all.
Monday, August 10, 2015
2015.08.10
It has been six months and change, over half a year, since my last post. Long time, but then time has a different meaning when you're riding the HD train. Hey, can't this heap go any goddamned faster? I don't know how much more of this agonizing trip I can take! But then, I know what's at the end of the ride and... well... maybe ease up on shoveling that coal. Maybe I'm not quite ready after all.
Anyway, I'm back. See, what happened was, after I realized how this blog was just so much bullshit, I found a new outlet to manage my grief. I set up shop on a different corner of the internet and started blogging stupid cartoons and writing - acting like a kid again, pissing on the wall and doing jumping-jacks in the puddle. It was fun and provided a daily distraction.
Also, I was really, very, consistently drunk most of the time, so there was some joy in waking up the morning after and checking the stats to see how many people saw me staggering around the internet with my dick out the night before. Ha! I showed them a thing or two don't you think?
Well a month ago my sister called with the news that my dad has pancreatic cancer. He'll die soon.
My first reaction - the biggest knot of agony in my stomach - came from the realization that my wife CANNOT find out about this. I told my sister not to call my house; not to talk to my wife - also, tell mom, my brother, his wife, not to call the house.
My wife cannot know my dad has pancreatic cancer because I have no idea how she would handle the news.
Of course, my sister asked why and I had to tell her. Huntington's Disease. Hands off/keep away.
So now all my family - except dad - know my secret.
"Hi dad. Sorry about the big C, but hey, my wife has HD. TRUMP CARD!"
Sitting at my desk for a couple of hours, processing this, and I'm overwhelmed. I shut the door and just start crying. Of course, life being the pile of shit that it is, now is when everybody comes knocking, bringing projects. No really, I'll go days with nobody stopping by my office at all. As soon as I need privacy.... Hello. Well, God-bless Houston and it's 365 day a year allergy season. Not everyone was convinced, I'm sure, but nobody pressed so I'm still okay at the job.
Why the sobbing? I mean, besides the fact that I'll be burying my father within the year? Well, how am I going to see him before he dies? I can't tell my wife about the cancer - I can't leave her alone and she has a very hard time traveling. Fuck - I might not even be able to go to the funeral.
I'll have to email my dad goodbye.
***
Hey, remember when I said life was shit and you thought I was walling in self-pity? Being a bitch? Well, check this out: after I told everybody in my family to stay away from my wife and I, just leave us alone, because I'm trying very hard to convince her she doesn't have Huntington's Disease and I can't have any conversational slips or discussions about sickness and health. After all that, my dad calls the house to tell us the news himself. And, yes, my wife answered the phone.
There should be limits.
Surprisingly, my wife takes the news very well. True, she never really got to know my dad. Only met him a few times - but this is a woman who will start singing "La La La!" at the top of her voice to drown out the TV while she scrambles for the remote control to change the station from any pharmaceutical commercial even suggesting treatment for a disease.
Later, I come to understand that she doesn't know what pancreatic cancer means. She's talking about how my dad will be okay - how she's see where lots of people have beat cancer.... Yeah, she's probably thinking prostate.
I don't correct her.
***
There's a lot still up in the air. I still don't know if or how I'll get to see my dad before he dies. Or the funeral.
My dad was always so big. Big tall guy.
What will he look like when I see him, if I see him?
Anyway, I'm back. See, what happened was, after I realized how this blog was just so much bullshit, I found a new outlet to manage my grief. I set up shop on a different corner of the internet and started blogging stupid cartoons and writing - acting like a kid again, pissing on the wall and doing jumping-jacks in the puddle. It was fun and provided a daily distraction.
Also, I was really, very, consistently drunk most of the time, so there was some joy in waking up the morning after and checking the stats to see how many people saw me staggering around the internet with my dick out the night before. Ha! I showed them a thing or two don't you think?
Well a month ago my sister called with the news that my dad has pancreatic cancer. He'll die soon.
My first reaction - the biggest knot of agony in my stomach - came from the realization that my wife CANNOT find out about this. I told my sister not to call my house; not to talk to my wife - also, tell mom, my brother, his wife, not to call the house.
My wife cannot know my dad has pancreatic cancer because I have no idea how she would handle the news.
Of course, my sister asked why and I had to tell her. Huntington's Disease. Hands off/keep away.
So now all my family - except dad - know my secret.
"Hi dad. Sorry about the big C, but hey, my wife has HD. TRUMP CARD!"
Sitting at my desk for a couple of hours, processing this, and I'm overwhelmed. I shut the door and just start crying. Of course, life being the pile of shit that it is, now is when everybody comes knocking, bringing projects. No really, I'll go days with nobody stopping by my office at all. As soon as I need privacy.... Hello. Well, God-bless Houston and it's 365 day a year allergy season. Not everyone was convinced, I'm sure, but nobody pressed so I'm still okay at the job.
Why the sobbing? I mean, besides the fact that I'll be burying my father within the year? Well, how am I going to see him before he dies? I can't tell my wife about the cancer - I can't leave her alone and she has a very hard time traveling. Fuck - I might not even be able to go to the funeral.
I'll have to email my dad goodbye.
***
Hey, remember when I said life was shit and you thought I was walling in self-pity? Being a bitch? Well, check this out: after I told everybody in my family to stay away from my wife and I, just leave us alone, because I'm trying very hard to convince her she doesn't have Huntington's Disease and I can't have any conversational slips or discussions about sickness and health. After all that, my dad calls the house to tell us the news himself. And, yes, my wife answered the phone.
There should be limits.
Surprisingly, my wife takes the news very well. True, she never really got to know my dad. Only met him a few times - but this is a woman who will start singing "La La La!" at the top of her voice to drown out the TV while she scrambles for the remote control to change the station from any pharmaceutical commercial even suggesting treatment for a disease.
Later, I come to understand that she doesn't know what pancreatic cancer means. She's talking about how my dad will be okay - how she's see where lots of people have beat cancer.... Yeah, she's probably thinking prostate.
I don't correct her.
***
There's a lot still up in the air. I still don't know if or how I'll get to see my dad before he dies. Or the funeral.
My dad was always so big. Big tall guy.
What will he look like when I see him, if I see him?
Wednesday, February 4, 2015
2015.02.04
Yesterday was THE day. I was going to stop drinking. I hadn't slept well the night before - I never sleep well, but that night was particularly rough. Sick. And sick all morning well into the afternoon. So I came to the conclusion that it has to stop. I've got to figure out a better way to deal with this situation.
Then the phone rings.
MW calls in a panic; she needs me to close her yahoo email account quick because she just gave that address to a clerk at Nordstrom’s, but then the clerk said something about how Nordstrom’s carries a brand of perfume - but they don't carry that perfume - so MW is worried that the clerk is going to use her email address for some scam. Because she lied about the perfume. Can not be trusted.
Yeeeeaaaahhhh. No. I have to keep drinking.
Again, this journal doesn't do justice to the situ. All conversations with MW are confounding or confusing. Lately she's been embodying the spirit of Ralph Kramden with every waking moment dedicated to figuring out some sort of money-making scheme. Dog walking, candy store, hair-stylists.... Uber driver.
Fortunately I'm around to talk her down from these flights. Or is it? Might be best if she were allowed to chase some dreams now, before it is too late. The thing is; she can't do anything on her own. She can't even get the right groceries anymore. Hell, I'm making sure there are open cans of dog food before I leave the house in the morning. Oh, she'd manage to get one open if she needed to, but then I'd be cleaning up the mess when I came home. So if I wanted to see MW realize her lifelong dream of, say, starting a candy store, I'd have to quit my job to help make it happen.
No fucking way. I need this job. They’re the only friends I have.
She does still do that four in the morning shout-out. I'm already awake for it, so it doesn't jolt me as bad anymore. Last night was weird in that she kept going. Normally she'll just blurt out a few words, maybe a full sentence, but last night she carried on a conversation for a couple of minutes. Fun.
If only….
Anyway, the thought of continuing these journal entries has become oppressive and depressing. Time to call it quits.
Then the phone rings.
MW calls in a panic; she needs me to close her yahoo email account quick because she just gave that address to a clerk at Nordstrom’s, but then the clerk said something about how Nordstrom’s carries a brand of perfume - but they don't carry that perfume - so MW is worried that the clerk is going to use her email address for some scam. Because she lied about the perfume. Can not be trusted.
Yeeeeaaaahhhh. No. I have to keep drinking.
Again, this journal doesn't do justice to the situ. All conversations with MW are confounding or confusing. Lately she's been embodying the spirit of Ralph Kramden with every waking moment dedicated to figuring out some sort of money-making scheme. Dog walking, candy store, hair-stylists.... Uber driver.
Fortunately I'm around to talk her down from these flights. Or is it? Might be best if she were allowed to chase some dreams now, before it is too late. The thing is; she can't do anything on her own. She can't even get the right groceries anymore. Hell, I'm making sure there are open cans of dog food before I leave the house in the morning. Oh, she'd manage to get one open if she needed to, but then I'd be cleaning up the mess when I came home. So if I wanted to see MW realize her lifelong dream of, say, starting a candy store, I'd have to quit my job to help make it happen.
No fucking way. I need this job. They’re the only friends I have.
***
MW has been sleeping well. Figures. Right when I've reached the point of constant nocturnal alcohol sickness, MW stops having those all-night dementia parties. No rest for the wicked.She does still do that four in the morning shout-out. I'm already awake for it, so it doesn't jolt me as bad anymore. Last night was weird in that she kept going. Normally she'll just blurt out a few words, maybe a full sentence, but last night she carried on a conversation for a couple of minutes. Fun.
***
Speaking to the void now - I'm just about ready to give this up. It didn't take long for me to realize it wasn't going to be of any use, and though I've been telling myself it is helpful as an outlet - it isn't. It’s pathetic and embarrassing. I look at other Huntington’s disease blogs and they’re all about hope and family and advocacy…. I’ve no hope; no family. In my weaker moments I fantasize about what it must be like to belong to an advocacy group – in communication with people who understand what MW and I are going through; working to make it better. Shit yes, I’ll walk for donations! Give me one of those goddamned t-shirts – blue looks great on me. You know I’ve never been one to join groups or take up causes, but I think I could really get into HD advocacy. Christ, just to be of some use; some help.If only….
Anyway, the thought of continuing these journal entries has become oppressive and depressing. Time to call it quits.
Friday, January 30, 2015
2015.01.30
Lately I've been rough, downright cruel, in these journal
entries. Blame it on winter. Also, I started drinking again and haven't
yet reached the just-so saturation point of a sustained blissful haze -
although that's coming along nicely, thank you.
Nevertheless, I do feel bad about calling MW "the human
paint-mixer" and "slightly demonic". Clearly, this ain't
one of those hope and prayer type blogs. It’s a lot of pain and
depression and futility. Anyway, I've said it before, and I'll say it now
- mostly to salve my own guilty conscious - I am not the one dying a
horrible death. That's on MW. I'm just the facilitator and equivocator
responsible for making the transition either better or worse.
And there's the root of this frustration: better
or worse? I have no idea what the fuck I'm doing and lives are at stake.
I'm not the right person to be in this position. I'm not strong. I'm not smart.
Hell, I may even not be morally or ethically equipped to handle this. I have no
religion; no empathy. The core of my personality would not be described as
noble or honorable. Given a choice between doing what’s easy and what’s right;
I’d go with easy every time.
Just my luck – there is no easy way out of HD. No right way
either. When I first started this blog, I quipped that “murder/suicide” was in
the top five answers to the problem of Huntington’s disease.
Ha fucking ha.
***
Speaking of “first started this blog”; remember when I
thought it would be useful for tracking MW’s symptoms? Another laugh. Reading over
it now, it’s just so much whining and self-pity. I know it’s a void, but if it
weren’t – if someone did read it, maybe someone not familiar with HD, they
would think I was the biggest bitch ever. Maybe I am.
So one last time, just to solidify my position: Yesterday MW
bumped her head on the edge of the car’s glove box. I know, right? I didn’t
think you could even do that, but she managed. Anyway, for the rest of the
night she worried that the bump had caused some serious internal injury. She
rubbed her head and asked over and over, “do you think I’m okay?”
Doesn’t seem like much, but this happens every night. No
holidays, no vacations, 365 days a year MW spends the night worrying about her
health while I stand there like a fool assuring her she’s fine. Is it a wonder
why I drink? I want to sit her down and tell her – “No, honey. You’re not okay.
You have Huntington’s disease. We need to get help.”
Or maybe just buy a gun.
And which of those choices would be easy? And which would be
right?
Wednesday, January 28, 2015
2015.01.28
The night goes fairly well. Rough start - MW has myriad little pains and worries that keep her up to around midnight, but eventually she falls and stays asleep. No four a.m. outburst, either. Overall a calm night.
You almost stop thinking about HD.
Then, while getting ready for work, she comes to you in the kitchen wearing her flannel pajamas buttoned all wrong, her hair flying away like she's in a wind tunnel, and that off-kilter, twisted rictus on her worried face so common to Huntington's Disease.
It is frightening to behold. The face, the expression, the way her body seems to move even while she's standing still; overall it has the effect of making her look inhuman. Slightly demonic.
She's concerned about her vitamins. Has she already taken them? Did I see her take them?
No. I didn't. Once again I turn away, no help whatsoever.
And that made me realize how much I miss writing.
What, this? This blog isn't writing. This is screaming at the void. Fuck you, void. I know I'm all alone, you don't have to be so smug about it.
You almost stop thinking about HD.
Then, while getting ready for work, she comes to you in the kitchen wearing her flannel pajamas buttoned all wrong, her hair flying away like she's in a wind tunnel, and that off-kilter, twisted rictus on her worried face so common to Huntington's Disease.
It is frightening to behold. The face, the expression, the way her body seems to move even while she's standing still; overall it has the effect of making her look inhuman. Slightly demonic.
She's concerned about her vitamins. Has she already taken them? Did I see her take them?
No. I didn't. Once again I turn away, no help whatsoever.
***
On the other hand, the gin worked great! After MW went down, I slept like a babe and didn't feel sick this morning. Only had one dream and it wasn't too weird: I was watching an old James Garner movie, circa 1960s, where he was a private eye investigating a house full of Ann Margret-esque lesbians. Yessir. I'll take that all night long.
***
A good night's sleep, no hangover, sun above and the temps crowding 80.... Time to shake off this funk. Oh sure of course I know I'm still nothing more than an HD vulture biding time, but at least I should be able to enjoy an afternoon walk now and again. Also, I've come to realize that part of the reason I've been so pissy (you know, aside from the obvious) is that I had to post an Amazon book review for a friend who just had another one published. And that made me realize how much I miss writing.
What, this? This blog isn't writing. This is screaming at the void. Fuck you, void. I know I'm all alone, you don't have to be so smug about it.
Tuesday, January 27, 2015
2015.01.27
Bed-zilla is back. Turns out the risk of rolling off the box spring was too much to handle after all. The mattresses are back on the floor. C'est la vie.
MW got another critique at work yesterday. It didn't sound like anything serious - a customer complained about excessive confirmation questions, but the rules of the job dictates that MW has to ask them, so it really wasn't her fault. The manager just told her to try and be more "conversational" about it. Now MW is worried about being fired. Something else to lose sleep over.
Tonight I'll switch to gin. Not much. Just enough. Heh. As if I know what that is....
MW got another critique at work yesterday. It didn't sound like anything serious - a customer complained about excessive confirmation questions, but the rules of the job dictates that MW has to ask them, so it really wasn't her fault. The manager just told her to try and be more "conversational" about it. Now MW is worried about being fired. Something else to lose sleep over.
***
The past few nights I've been doubling down on the vodka in an effort to create some of those weird dreams because even a bad vodka dream means sleep and, hey shit, I need some of that. And it was working for awhile. I had a real fucked up dream about a bird that had a badminton birdy stuck in its ass. Then there was one where I was desperately trying to make friends with a man who had an English accent. But last night I overdid it. I drank way too much and all I got was sick. Woke up shaky and haven't recovered yet. No, literally, my hands are still shaking.Tonight I'll switch to gin. Not much. Just enough. Heh. As if I know what that is....
***
I'm still miffed at the stupid internet HD stuff. Its all so pathetically fey and pointless. Saw another Facebook page about wearing blue and purple for Huntington's Disease awareness - nothing but cheesy graphics overlayed with meaningless bromides. I've only seen one truthful blog so far - the trainwreck one - where the writer knows she has the disease and is brutally honest about it. No happy horseshit about hoping for a cure or, worse, God's mysterious plan. Hell, she even addresses suicide - #3 on the list of HD killers. She's the only one telling it like it is and, for that, has become my Huntington's hero. Unfortunately she's been pretty quite lately. One assumes the worse.
Sunday, January 25, 2015
2015.01.25
The wheel keeps grinding.
Bed-zilla kept us snug for about a year, but I had to dismantle her last night. The problem came about when MW hyper-extended her thumb trying to rise up from the double queen mattresses on the floor. This pain, she was sure, would cause her to have to quit and go on disability. She would never be able to hold a spoon; work a mouse. Her life was effectively over. All because she hurt herself getting out of Bed-zilla! So the mattresses were moved, shuffled, re-shuffled, and now the sleeping situation is thus: MW sleeps in the sitting room on a mattress resting on a box spring. I'm on the other mattress in the foyer. We are separated by blankets tacked up over the entryways designed to keep MW's room dark, but still allow for enough light so she can make it to the restroom. Tricky business, this. It looks like we're trying to build erratic passageways for a lame haunted house.
Today, of course, the thumb felt just fine (it really was just a sprain and not a permanent disability. Go figure), so we'll see how long the current arrangement lasts. Recall that Bed-zilla was developed in response to MW's worry about bumping her head or falling out of bed. I asked her if she was sure about the box spring. That's a foot/foot and a half extra on the way down. She considered it for awhile and decided a fall from that height wouldn't be too bad. A better risk than having to push up off the ground all the time, anyway.
We shall see.
For me, for now, this is great! Sure, I'm still close enough to hear her when she snores or bursts out talking in the middle of the night, but we're on separate beds so I don't have to feel her spastic movements or hold her twitching hand. Peaceful.
Okay.
Here again, I could disagree. I could tell her it is worth the risk to spend time with friends. I could try to coax her out of this irrational behavior. Hell, I know time is short. She really should be having as much fun as possible now. Right now.
But I don't. I do the opposite. I shrug, say, yeah, kids.... Always sick. And this year is supposed to be a bad flu season, so....
Easier and safer to just stay home and cook and clean for MW while she watches TV. Plus, at home I can sneak upstairs and drink and drink and drink until I don't feel like such a bad person.
Ha. Famous last words.
Then there are the movies about at risk people who get tested. I can't.... Can't even.... You know what? They all have families and support groups and friends and loved ones and go ahead. Go right ahead. If it's positive, there's the arms to hold you. A wide angle shot of all the loving arms to hold you. Negative? Good for you.
Good for you.
Me? I have to stop surfing the internet.
Bed-zilla kept us snug for about a year, but I had to dismantle her last night. The problem came about when MW hyper-extended her thumb trying to rise up from the double queen mattresses on the floor. This pain, she was sure, would cause her to have to quit and go on disability. She would never be able to hold a spoon; work a mouse. Her life was effectively over. All because she hurt herself getting out of Bed-zilla! So the mattresses were moved, shuffled, re-shuffled, and now the sleeping situation is thus: MW sleeps in the sitting room on a mattress resting on a box spring. I'm on the other mattress in the foyer. We are separated by blankets tacked up over the entryways designed to keep MW's room dark, but still allow for enough light so she can make it to the restroom. Tricky business, this. It looks like we're trying to build erratic passageways for a lame haunted house.
Today, of course, the thumb felt just fine (it really was just a sprain and not a permanent disability. Go figure), so we'll see how long the current arrangement lasts. Recall that Bed-zilla was developed in response to MW's worry about bumping her head or falling out of bed. I asked her if she was sure about the box spring. That's a foot/foot and a half extra on the way down. She considered it for awhile and decided a fall from that height wouldn't be too bad. A better risk than having to push up off the ground all the time, anyway.
We shall see.
For me, for now, this is great! Sure, I'm still close enough to hear her when she snores or bursts out talking in the middle of the night, but we're on separate beds so I don't have to feel her spastic movements or hold her twitching hand. Peaceful.
***
In the past month, MW has declined two invitations to hang out with friends. She is afraid to be around these people because they all have small children and she doesn't want to catch a cold, or worse, the flu. Children are horrible when it comes to spreading disease, she says. And she can't risk loosing sleep because of any sickness.Okay.
Here again, I could disagree. I could tell her it is worth the risk to spend time with friends. I could try to coax her out of this irrational behavior. Hell, I know time is short. She really should be having as much fun as possible now. Right now.
But I don't. I do the opposite. I shrug, say, yeah, kids.... Always sick. And this year is supposed to be a bad flu season, so....
Easier and safer to just stay home and cook and clean for MW while she watches TV. Plus, at home I can sneak upstairs and drink and drink and drink until I don't feel like such a bad person.
***
It has been a dreary, rainy, shitty winter; but the last two days have been sunny and mild. I'm still thinking about that trip to the University of Houston, but I've added another item to my list of hopeful accomplishments for 2015 - a good goddamned spring cleaning of Casa Muncie. See, I can't really clean the house when MW is around because, well, just because she's pretty demented is the best I can do without getting into the sad details (they involve a fear of moving dust around and toxins in cleaning supplies). So if she can continue working weekends for another month or two, I might get a chance to fling open the windows, turn the radio on loud, and swab this dump from steeple to floorboards. There is always the risk that she'll notice and get angry, but I'm not too concerned. She hasn't been noticing much recently and as long as I don't leave any incriminating sponges, clothes, or other cleaning supplied behind for her to fret over, what's the worse she can do?Ha. Famous last words.
***
I know I shouldn't, but I've been looking at Huntington's Disease blogs, facebook pages, internet noise again. You tell yourself you want information - information is always good, right? - but the reality is you just want to find company for your special brand of misery. Then you get pissed because there is no fucking company for you. You're all alone. And all those bullshit "bare the truth" or "caregiver happiness" advocacy movements just raise your hackles. My truth is that I have to lie - HAVE TO LIE - all the time every day and the only happiness I have to look forward to is that first drink of the night - hidden away in the closet of my upstairs bedroom drinking, drinking, drinking. And when MW asks why she smells alcohol I shrug. I just used mouthwash, I say. Because everything has to be a fucking lie. Has to.Then there are the movies about at risk people who get tested. I can't.... Can't even.... You know what? They all have families and support groups and friends and loved ones and go ahead. Go right ahead. If it's positive, there's the arms to hold you. A wide angle shot of all the loving arms to hold you. Negative? Good for you.
Good for you.
Me? I have to stop surfing the internet.
Thursday, January 8, 2015
2015.01.08
I've recognize the portends. The end is coming soon. It started when MW insisted that we start talking to my mother again - something we haven't done in almost five years. Recall that the reason I severed ties with mom in the first place is because she yelled at MW about her "bad" behavior.
Well. Ha. Thanks a lot, mom, but.... Goodbye.
Now MW wants to "forgive and forget" and re-open those lines of communication. I tried very hard to convince MW otherwise, told her that my mother couldn't be trusted, but, as you know, what MW wants, MW gets; so we called and talked to mom on New Year's day.
It went well. Everybody was pleasant enough. No drama, but it was difficult for MW to sleep that night.
So I vowed to keep the phone calls with mom infrequent and short.
Here's the problem: last night MW saw "spotting" when she wiped after going to the bathroom, but her period isn't due for another week. This sent her into a downward spiral of insensible worry and, when she reached bottom, she decided to call my mother to ask about the possible causes.
I tried very hard to talk her out of it, suggested other, more sensible alternatives, but she went ahead and made the call anyway.
Fortunately my mother, bless her, didn't say anything to panic MW nor did she call MW's behavior into questions. So, again, it went well; but it's only a matter of time before this situation blows up. My mother can't be trusted. If MW continues to call her with these late-night, paranoid, hypochondriac, demented worries, mom will say something wrong. How can she not? I'm the only one capable of dealing with MW because I'm the only one who knows what's going on.
The question is: should I tell mom about MW's condition? Let her know what the situation is?
I just.... I just can't trust her. Her or anybody in my family. Not that I blame them. If the situation were reversed, I would definitely want to do something to help. Unfortunately, any such acknowledgement of the problem would spell disaster. If MW even suspected I told anybody about anything that goes on with her - the sky would fall.
So I wait for somebody to fuck it up honestly and on their own. Say something to MW that sends her into a tailspin. It doesn't have to be much, might even be entirely innocent, maybe just a thoughtless reply to one of MW's increasingly odd questions - but if I can't find a way to isolate her from my family, it'll happen. And if it doesn't happen because of my family, it'll happen at her job. Either way, I feel like buying some red paint and a white sandwich board: The End Is Coming Soon!
2015.01.09
Got lucky last night. MW went down around 9:30, fell asleep like a stone, and didn't really wake up again until this morning. She muttered some when I tucked her in, and she's still doing the Drinkers' Hour shocker, but no incessant worrying or dementia. A good night.
Didn't last long. MW saw blood again this morning and it took a concentrated effort to get her ready for work and out of the house. I fear tonight will be one of the sleepless kind as she seems extremely agitated about this spotting situation.
Just to get this out of the way - no, I'm not a gynecologist. Yes, I should probably encourage MW to see a doctor. But you have to understand - this type of stuff doesn't end. It is always something. And it is never anything. When MW first saw the spotting, she came to me and offered up the tissue, holding it out she said, "Look, blood". Okay. For the record, there was a slight pinkish tint on the tissue. Maybe. I mean it was so faint it was hard to tell. She wiped again, came back and it was even less noticeable. So I'll play the odds and tell MW that there is nothing to worry about. Menopause. That's what we're calling it. And who knows? Could be. MW is 48 now, a little young, but in the ballpark.
If this seems irresponsible, remember, studies show that Huntington's Disease patients are statistically less likely to have cancer and besides.... NOTHING IS WORSE THAN HD ANYWAY!
But this was kind of cool: MW's 4:00 a.m. shout out? Was in French. In her sleep she cried, "Je suis! Je suis!" with a passable accent. A holdover from watching news about Charlie Hebdo, no doubt. Still, if you have to be shocked awake in the middle of the night, it's nice to have a little Rosetta Stone action now and again.
Well. Ha. Thanks a lot, mom, but.... Goodbye.
Now MW wants to "forgive and forget" and re-open those lines of communication. I tried very hard to convince MW otherwise, told her that my mother couldn't be trusted, but, as you know, what MW wants, MW gets; so we called and talked to mom on New Year's day.
It went well. Everybody was pleasant enough. No drama, but it was difficult for MW to sleep that night.
So I vowed to keep the phone calls with mom infrequent and short.
Here's the problem: last night MW saw "spotting" when she wiped after going to the bathroom, but her period isn't due for another week. This sent her into a downward spiral of insensible worry and, when she reached bottom, she decided to call my mother to ask about the possible causes.
I tried very hard to talk her out of it, suggested other, more sensible alternatives, but she went ahead and made the call anyway.
Fortunately my mother, bless her, didn't say anything to panic MW nor did she call MW's behavior into questions. So, again, it went well; but it's only a matter of time before this situation blows up. My mother can't be trusted. If MW continues to call her with these late-night, paranoid, hypochondriac, demented worries, mom will say something wrong. How can she not? I'm the only one capable of dealing with MW because I'm the only one who knows what's going on.
The question is: should I tell mom about MW's condition? Let her know what the situation is?
I just.... I just can't trust her. Her or anybody in my family. Not that I blame them. If the situation were reversed, I would definitely want to do something to help. Unfortunately, any such acknowledgement of the problem would spell disaster. If MW even suspected I told anybody about anything that goes on with her - the sky would fall.
So I wait for somebody to fuck it up honestly and on their own. Say something to MW that sends her into a tailspin. It doesn't have to be much, might even be entirely innocent, maybe just a thoughtless reply to one of MW's increasingly odd questions - but if I can't find a way to isolate her from my family, it'll happen. And if it doesn't happen because of my family, it'll happen at her job. Either way, I feel like buying some red paint and a white sandwich board: The End Is Coming Soon!
2015.01.09
Got lucky last night. MW went down around 9:30, fell asleep like a stone, and didn't really wake up again until this morning. She muttered some when I tucked her in, and she's still doing the Drinkers' Hour shocker, but no incessant worrying or dementia. A good night.
Didn't last long. MW saw blood again this morning and it took a concentrated effort to get her ready for work and out of the house. I fear tonight will be one of the sleepless kind as she seems extremely agitated about this spotting situation.
Just to get this out of the way - no, I'm not a gynecologist. Yes, I should probably encourage MW to see a doctor. But you have to understand - this type of stuff doesn't end. It is always something. And it is never anything. When MW first saw the spotting, she came to me and offered up the tissue, holding it out she said, "Look, blood". Okay. For the record, there was a slight pinkish tint on the tissue. Maybe. I mean it was so faint it was hard to tell. She wiped again, came back and it was even less noticeable. So I'll play the odds and tell MW that there is nothing to worry about. Menopause. That's what we're calling it. And who knows? Could be. MW is 48 now, a little young, but in the ballpark.
If this seems irresponsible, remember, studies show that Huntington's Disease patients are statistically less likely to have cancer and besides.... NOTHING IS WORSE THAN HD ANYWAY!
***
But this was kind of cool: MW's 4:00 a.m. shout out? Was in French. In her sleep she cried, "Je suis! Je suis!" with a passable accent. A holdover from watching news about Charlie Hebdo, no doubt. Still, if you have to be shocked awake in the middle of the night, it's nice to have a little Rosetta Stone action now and again.
Monday, January 5, 2015
2015.01.05
Something new for the New Year: the past three nights, between 4 and 5 in the morning, MW has called out something horrifying in her sleep. The first night it was a crescendo moan/scream that absolutely froze the blood in my veins. The next night it was laughter - at first creepy, but after I became fully awake, it wasn't so bad. Then last night she called "Help!", just once, but very loud. Loud enough I worried neighbors might have heard.
She never woke up, but started snoring again almost immediately after these disturbances.
So weird.
MW talking in her sleep isn't unusual, but up to now it has been softly spoken and not very dramatic; replaying work-place conversations, phone calls, stuff like that. And three nights in a row, at almost the exact same time, has never happened before.
Good. I love laying awake in bed - alert, heart pounding - for hours before I have to get up.
Last week I accidentally deleted the music folder from my computer and back-up drive. A CD collection spanning 30 years gone in the blink of an alcohol hazed eye. And you know what, it didn't really bother me. Still doesn't. Sure, I could try to rebuild it, but who has another 30 years to spend? Not me. Good god, hopefully not me.
I mention it only because, thinking back on my favorite albums and the times in my life they represented, I realize how much this goddamned Huntington's disease has already taken from me. My wife, yes, of course, millimeter by painful millimeter it has taken and continues to strip her away; but so much more. I have no friends and my familial relationships are strained to the point of failure (if they aren't broken already). I can't go anywhere, do anything - I'm pretty much a prisoner in my own house.
Last year I sold back 150 hours of unused vacation time. A nice chunk of change, but still.... That's almost a month of time I should have spent doing something fun with people who love me or at least like me a little bit.
As it is now, time away from work is just more time gobbled up by the disease. Hell. People at work do like me a little bit. We don't do anything fun here, but it's better than being a forced participant in MW's descent.
I've lost all my music, but it doesn't matter. Those songs are just old memories of a person I used to be.
2015.01.06
Didn't have the 4:00 am nightmare jolt, but MW's sleeping patterns continue to befuddle. Last night while laying in bed, talking about something she'd seen on TV, MW fell asleep almost mid-sentence. She was talking then, suddenly, snoring. About an hour later, she came awake and continued the conversation almost exactly where she left off.
Strange but not as unpleasant as the recent spate of nocturnal screams. Consider it a good day.
First, an addendum: yesterday I bitched about what all I've lost to HD but forgot to mention that, because of the disease, I'll never have kids. This isn't as big a regret as one might think. Obviously it was good MW didn't have children - definitely not worth the risk of passing on the HD gene - but it was probably right that I didn't get the chance either. Look, based upon how badly I've fucked things up so far, its clear I'd've been balls as a parent. I don't know what I'm doing, I consistently make the wrong decisions, and I'm not strong enough to be relied upon. So I guess I all those kids I didn't have got lucky.
Anyway, although I enjoy dwelling upon my sadness as much as the next jerk, I have that niggling voice in my head constantly reminding me that it is MW, not I, who is dying ugly. Certainly there is no guarantee I won't succumb to Alzheimer's or some similar reprehensible fate, but the odds are I'll be very old when that happens. MW is going to start loosing her facilities within the next five, maybe ten years. By the time I start going under, I'll just be another forgotten old man, hopefully in some assisted living facility where they don't rape their clients too much. Death will be a sweet, hard earned but well deserved, release. MW, however, will know that she's dying while all her friends and family are experiencing the primes of their lives.
And they will not have much time or, honestly, the inclination to sit with her as she lay sick and incoherent, year after year, on her well-worn deathbed.
I'm the only one who'll be there. Drunk, sick.... But there. Marking off the day's along side MW.
She never woke up, but started snoring again almost immediately after these disturbances.
So weird.
MW talking in her sleep isn't unusual, but up to now it has been softly spoken and not very dramatic; replaying work-place conversations, phone calls, stuff like that. And three nights in a row, at almost the exact same time, has never happened before.
Good. I love laying awake in bed - alert, heart pounding - for hours before I have to get up.
***
Last week I accidentally deleted the music folder from my computer and back-up drive. A CD collection spanning 30 years gone in the blink of an alcohol hazed eye. And you know what, it didn't really bother me. Still doesn't. Sure, I could try to rebuild it, but who has another 30 years to spend? Not me. Good god, hopefully not me.
I mention it only because, thinking back on my favorite albums and the times in my life they represented, I realize how much this goddamned Huntington's disease has already taken from me. My wife, yes, of course, millimeter by painful millimeter it has taken and continues to strip her away; but so much more. I have no friends and my familial relationships are strained to the point of failure (if they aren't broken already). I can't go anywhere, do anything - I'm pretty much a prisoner in my own house.
Last year I sold back 150 hours of unused vacation time. A nice chunk of change, but still.... That's almost a month of time I should have spent doing something fun with people who love me or at least like me a little bit.
As it is now, time away from work is just more time gobbled up by the disease. Hell. People at work do like me a little bit. We don't do anything fun here, but it's better than being a forced participant in MW's descent.
I've lost all my music, but it doesn't matter. Those songs are just old memories of a person I used to be.
2015.01.06
Didn't have the 4:00 am nightmare jolt, but MW's sleeping patterns continue to befuddle. Last night while laying in bed, talking about something she'd seen on TV, MW fell asleep almost mid-sentence. She was talking then, suddenly, snoring. About an hour later, she came awake and continued the conversation almost exactly where she left off.
Strange but not as unpleasant as the recent spate of nocturnal screams. Consider it a good day.
***
The conclusion of yesterday's entry made me aware of how pathetic I've become, clearly, but also inspired me to recall and try to document the lives currently being dissolved by HD. The good parts anyway. No use dwelling on the bad - past failures and sufferings are all feeble in comparison to what's going on now; and nowhere near as agonizing as what the future holds.First, an addendum: yesterday I bitched about what all I've lost to HD but forgot to mention that, because of the disease, I'll never have kids. This isn't as big a regret as one might think. Obviously it was good MW didn't have children - definitely not worth the risk of passing on the HD gene - but it was probably right that I didn't get the chance either. Look, based upon how badly I've fucked things up so far, its clear I'd've been balls as a parent. I don't know what I'm doing, I consistently make the wrong decisions, and I'm not strong enough to be relied upon. So I guess I all those kids I didn't have got lucky.
Anyway, although I enjoy dwelling upon my sadness as much as the next jerk, I have that niggling voice in my head constantly reminding me that it is MW, not I, who is dying ugly. Certainly there is no guarantee I won't succumb to Alzheimer's or some similar reprehensible fate, but the odds are I'll be very old when that happens. MW is going to start loosing her facilities within the next five, maybe ten years. By the time I start going under, I'll just be another forgotten old man, hopefully in some assisted living facility where they don't rape their clients too much. Death will be a sweet, hard earned but well deserved, release. MW, however, will know that she's dying while all her friends and family are experiencing the primes of their lives.
And they will not have much time or, honestly, the inclination to sit with her as she lay sick and incoherent, year after year, on her well-worn deathbed.
I'm the only one who'll be there. Drunk, sick.... But there. Marking off the day's along side MW.
Friday, January 2, 2015
2015.01.02
What's new, year? Nothing. Same shit, different calendar.
Reviewing this journal, MW and I are in the exact same place we were back in early 2014. MW is still, for lack of better word, demented about sleep and diet.
She still complains about uncontrolled movements and "twitching" and I continue to lie about how that is perfectly normal.
I'm still sensitive (perhaps overly so) about her slurred, erratic speech and strange conversations; making it my life's mission to keep her away from family or situations where someone might call out this behavior.
If anything, the line I've been walking between caregiver and paycheck has grown thinner: I can no longer travel for work because I have to be here to take care of MW, but travel is part of my job description.
And, just like 2014, the only sure thing on the horizon is things getting worse. The big mystery is when and what flavor the coming disaster? Another year? Five? Ten? Will I need to quit my job and find something with more stable hours? More importantly, how will MW handle it when I can't hide the truth anymore?
Add to this mix my own failing health (exhaustion, alcoholism, depression) and 2015 looks to be another humdinger of a year!
Nothing for it but to carry on. In that spirit, here's more for the chronicle:
Last night was the bad night. MW couldn't sleep and kept waking me up until around three in the morning when she finally dozed off. Nothing special about this, standard operating procedure around Casa Muncie, the only thing is this time she didn't even complain about anything. Normally there's some ache or worry or something, but last night was all about not sleeping for the sake of not sleeping. All night long, she just kept asking me; "Do you think I'll sleep?" over and over again.
MW forced me to call my mother and wish her a happy new year, and I haven't talked to my mother in almost five years. This is extremely troublesome. First of all, MW demands that I keep the phone on speaker so she can hear everything being said. See, she doesn't want anyone talking about her, also, she needs to make sure I don't say anything to contradict her house of lies. This makes for a nerve-wracking phone call. I have no control over what mom will say and I'm never really sure if what I'm saying is good enough for MW. Bad mojo.
Surprisingly, my mother kept a civil tongue and didn't ask any personal questions so nothing was said to upset MW. A success, I suppose, but I'm certainly not looking forward to opening these lines of communication. I just can't trust my mother not to lob more grenades my way.
Reviewing this journal, MW and I are in the exact same place we were back in early 2014. MW is still, for lack of better word, demented about sleep and diet.
She still complains about uncontrolled movements and "twitching" and I continue to lie about how that is perfectly normal.
I'm still sensitive (perhaps overly so) about her slurred, erratic speech and strange conversations; making it my life's mission to keep her away from family or situations where someone might call out this behavior.
If anything, the line I've been walking between caregiver and paycheck has grown thinner: I can no longer travel for work because I have to be here to take care of MW, but travel is part of my job description.
And, just like 2014, the only sure thing on the horizon is things getting worse. The big mystery is when and what flavor the coming disaster? Another year? Five? Ten? Will I need to quit my job and find something with more stable hours? More importantly, how will MW handle it when I can't hide the truth anymore?
Add to this mix my own failing health (exhaustion, alcoholism, depression) and 2015 looks to be another humdinger of a year!
***
Nothing for it but to carry on. In that spirit, here's more for the chronicle:
Last night was the bad night. MW couldn't sleep and kept waking me up until around three in the morning when she finally dozed off. Nothing special about this, standard operating procedure around Casa Muncie, the only thing is this time she didn't even complain about anything. Normally there's some ache or worry or something, but last night was all about not sleeping for the sake of not sleeping. All night long, she just kept asking me; "Do you think I'll sleep?" over and over again.
MW forced me to call my mother and wish her a happy new year, and I haven't talked to my mother in almost five years. This is extremely troublesome. First of all, MW demands that I keep the phone on speaker so she can hear everything being said. See, she doesn't want anyone talking about her, also, she needs to make sure I don't say anything to contradict her house of lies. This makes for a nerve-wracking phone call. I have no control over what mom will say and I'm never really sure if what I'm saying is good enough for MW. Bad mojo.
Surprisingly, my mother kept a civil tongue and didn't ask any personal questions so nothing was said to upset MW. A success, I suppose, but I'm certainly not looking forward to opening these lines of communication. I just can't trust my mother not to lob more grenades my way.
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