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.
Saturday, December 19, 2015
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.
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