2016.12.23

What's the opposite of gaslighting?

Gaslighting. I hadn't even known that was a real thing - I mean, I'd seen the movie and heard the term used before, but always in a context that was so bizarre as to be fictional. Or humorous - "you trying to gaslight me?" But, apparently, it is a form of psychological abuse common enough to be buzzed about these days. They even had a story about it on one of the local news stations recently. 

And, once again, it caused me to question my behavior towards MW. 

What the hell am I doing to her?

This comes after a particularly treacherous Sunday where my little house of cards came so very close to collapsing. MW fell down suddenly and without any provocation. One second, standing; the next, on her knees on the floor looking dazed and confused.

And, oh, that was not good.

But before we get into the after-effects, allow me to expand on some of my experiences with the symptoms of early-onset dementia via HD. First and foremost, if you haven't actually spent time - real time - with someone who has Huntington's disease, there is no way you'll ever understand what it is like. This isn't hyperbole or aggrandizement of the disease. Yes, there are plenty articles you can read about the "cognitive" disorders - difficulty organizing, perseveration, depression, on and on - but unless you live there...? You couldn't possibly understand.

But I do. And I've learned - hard - how to deal...? No, not deal exactly. But how to... use? How to use MW's myriad spikes of dementia to my advantage. 

Sounds dubious, and I suppose in a way it is. Reverse gaslighting.

See, MW cannot disassociate her own experiences with external forces. A mouthful, but basically, if there is something that causes something, it doesn't really cause that thing unless it happened exactly the same way to her.

Errrr. Maybe an example will help. So MW occasionally gets rashes - heat rashes - around her collar. Nothing remarkable - happens to everybody, but each time one occurs on MW she sinks into a pit of worry and despair. Why is she getting the rash? What does it mean? Is it cancer? Will she die?

I do my best to calm her; no, it is just a heat rash. It'll fade soon. Be patient.

But that answer can not assuage her because she has been in hot weather before, and it hasn't always caused a rash.

No, see, that's not what a heat rash means. It isn't just weather.... 

Anyway, no matter how hard I try to convince her otherwise, she can't disassociate her experiences. The rash could be caused by a bug bite - she's been bit before without getting a rash. Might be anxiety - she's had worse days. Maybe an allergy - but she's never been allergic to anything before

Like that.

Now back to the fall: MW recovered physically - not even bruised - but the downward emotional spiral was intense. The fall, she knew, was a symptom of HD.

Of course not, I assured her. Everybody falls. Not everybody has HD. You've nothing to worry about.

She wasn't buying it: Not everybody falls, she said; not like that. She was certain she had HD; and continued to press me to acknowledge that fact.

But I stuck to my guns. Falling has nothing whatsoever to do with HD. Not even close. Not relevant at all. Falling is just an accident and accidents happen to everyone.

Again, if you've never spent time.... You probably wouldn't believe how long this conversation went on. MW would not; could not let it go. She insisted I tell her the truth - she insisted I tell her she had the disease.

It wore me down. I almost cracked. 

But then I had an inspiration:

Your mom never fell; I asked her. Did she?

MW thought about that. No. No, my mother never did fall down.

See? Your mother had HD, but she never fell down, so falling down is not a symptom of Huntington's Disease.

Bingo. I'd proven to MW's satisfaction that she did not have anything to worry about; and I did it by exploiting her own "cognitive" weakness.

Because of course her mother had fallen down. Of course she had. MW hadn't been with her 24 hours of the day; and the time she was with her would have been around the house where, even if she had fallen, she wouldn't have drawn attention to that event.

But MW always bragged about how healthy her mother had been up until the diagnosis. How strong a woman.... Hell, I believe it is quite possible MW had seen her mother fall; but just couldn't make the connection because after the diagnosis it was all pretty much house-bound, moving only when assisted or by wheelchair. Hard to fall when you're in a wheelchair.

So a stiff wind had blown; the walls buckled and plaster fell from the ceiling, but I'd managed to keep the whole goddamned mess together. One more time. 

And I owe it all to reverse gaslighting.

2016.11.08

Yet another round of hateful holidays. 

In one regard, this has been the best holiday season we've had in years because MW is socializing some and even eating out on occasion. So we do have Thanksgiving plans that will keep us occupied most of the day. Much better than the previous five years with the holidays spent alone; sitting around a dark house depressed. Instead, we will be eating lunch at a friends and, later, turkey at my brother's. A full dance-card. Then, on Friday, we're meeting another set of friends for a pizza diner. 

Too busy to be sad. Hopefully that holds true.

Of course, there is still plenty to be fearful about this horrible season. Primarily, MW's chorea is pushing right up to that edge where I'm not sure I can obfuscate the truth much longer. Every single day brings a newly broken dish; a mess of spilled food. Also, she is becoming very difficult to understand; not only in speech, but the words she uses are confusing. I think I do well parsing MW's meaning at home, however, I worry about her going to work. Her primary job is data entry over the phone. Indeed, the job doesn't require much by way of formulating thoughts or presenting unique information, nevertheless, she stammers and slurs a lot, at least when she's around me. If she does the same at work...? 

And that's just her job; what about visiting friends? Eating with friends? What if one of them says something about MW's behavior? Her appearance? Something innocent - even said to be funny - could send MW spiraling. 

I hate not having control over MW's environment. I hate this time of year.

Well, we've no choice but to push through. And there has been another life event that's sort of working to my advantage. MW is, apparently, starting menopause. How can this be advantageous, you may rightfully ask, and the answer is - the symptoms of menopause got nothing on Huntington's disease. Indeed, they're even helpful as long as they provide a distraction. So MW has been obsessively anxious about hot flashes lately; well, that's a whole hell of a lot better than her being worried about having HD. Yes, the obsession itself is equally exhausting and frustrating, but there's no real terror of misspeaking. I don't mind spending countless hours batting about the intricacies of menopause because, no matter what, it's just a natural thing. It's going to happen. There are no traps or pitfalls for me to skate around.

I can't fuck up menopause.

2016.10.20

Along with chorea and speech issues, there has been an up-take in MW's distrust and overall irritation towards me. Nothing as significant as when she accused me of trying to poison her, but I credit that to the fact that I've been extremely cautious lately. No more soapy dishes and everything gets put back in place. Nevertheless, even though all her food is prepared correctly and there are no items laying around that could possibly present a tripping or toppling danger, MW will dig through the trash to lay eyes on every piece of junk mail I throw away and on more than one occasion she's followed me when I've gone to the bathroom to ensure I don't make any unannounced detours around the house. In truth, I do sneak around and clean things when MW is not paying attention - she won't let me otherwise - so having her shadow me with the fish-eye is making things difficult around Casa Muncie.

Also, on a daily basis now, MW will pick a political fight with me. No matter how I try to deflect the issue, she will fly into a rage over how weak and useless I am because I don't support her candidate. Truthfully, I don't support or not-support either of them. I could care less. As I like to say, I've got the kind of problems money can't solve. However, because each day brings a new political "bombshell", MW has plenty of ammunition to use against me. She'll hear about some perceived outrage towards her candidate or egregious corruption of the opponent and stew over it until she explodes because I don't care as much as I should.

Over the past few weeks I've been routinely called an elitist, a wimp, an America hater, even a traitor and MW let's me know often and in no uncertain terms how much she "hates people" like me.

In retrospect, I should have registered which would have enabled me to at least lie about who I would vote for; but I just couldn't bring myself to make the effort. And I know it wouldn't have made a difference anyway. I can't possibly match MW's boundless fervor - good Lord I haven't the stamina! - so I try my best to defuse these situations. It's hard, though, because showing calm in the face of MW's fury only seems to add more fuel to that fire; and on a couple of occasions it has stopped just short of physical violence.

I will be so fucking glad when this stupid election is over. Yes, I'll take some hits afterwards, especially when her candidate loses, and even then I'm sure something else will come along, but at least there's a chance that whatever's next might be more manageable; not as persistent. 

2016.10.05

It's been a long cycle of a revolutions from incapacity to functional with wheel grinding us away a little more each time. 

We're going through another downturn now - MW has grown fearful of how her legs frequently "buckle" - and she is once again sinking into a place of despair and dysfunction. 

She speaks often of Huntington's and has been trying to box me into talking about it - aggressively asking me what I know about the disease; what are the symptoms; and wouldn't I tell her if I thought she had it?

So far I've been able to equivocate. I reassure her over and over again that she doesn't have any of the symptoms, she doesn't show any signs, and she does not have Huntington's Disease.

She keeps pressing, but I stick to my lies. What else can I do?

What really tears me apart, however, is when she starts running the numbers - talking about how her mother didn't get the disease until she was in her late sixties. How her aunt was almost seventy when she got the disease.

Plenty of time.

And I wonder what, if anything, she would do differently if I told her the truth about the time she has left. 

Would she decide to make the best of her remaining years, or would she succumb to despair?

"You wouldn't even tell me if I did have it," she noted. "Would you?"

"How can I answer that?" I replied.

She thought a moment and then said, "I guess you know I wouldn't be able to handle it."

"Well," I said. "Good thing you don't have it then."

This is a bad turn of the wheel. We're back to rearranging everything in the house to accommodate MW's anxieties. Beds and sofas moving hither and yon. Blankets tacked up everywhere. And every day she tells me she hates her job and wants to quit. I encourage her to do just that, but she stays because she's afraid of being home alone. Still, it is just a matter of time before she leaves or is fired. 

And the little disasters are increasing in frequency and severity. Every day it is some new mistake or accident from the worrisome (coming home to a house reeking of burnt food) to the bizarre (getting an upset phone call because MW hadn't been able to get her wet bra on so she had to go to work wearing three shirts and no bra. The call was to have me research bras that have a front clasp.)

The question is, will this revolution pass? Will she once again settle into a more-or-less functional state? How many more of these bad turns do we have before the wheel gets stuck?

2016.09.22

A milestone: this marks the hundredth entry, encapsulating just about three years of our Huntington's Disease journey. Surprisingly, some things have improved since I started this journal. MW manages to sleep most nights now and has kept a part-time job for two years. She started socializing again and last week she ate out at a restaurant for the first time since I don't know when - close to five years at least.

On the other hand, the chorea and speech issues have become more noticeable. Volume control, in particular. I'm still getting used to the way MW will start shouting for no apparent reason. And the house.... It has become like a bad situation comedy. When I get home from work I ask myself how much worse today's mess will be from yesterday's mess; and I'm always surprised by the level of chaos and disorder.

Last week, after the visit from her ghoulish relatives, MW confessed that she still thinks she might have the disease, but quickly countered by saying she won't actually get it for another twenty years because her mother was in her 60s when she got it. That's not so bad - twenty more years of health and productivity. She can live with that.

Boy, I could too. Twenty years? Hell, she might outlive me at that.

When I take a step back to assess my own physical and emotional pain, I grant myself a certain amount of indulgence. I'm old. Things are falling apart. I haven't had a drink in three weeks and my chest hurts at times. I have a hernia which causes near constant discomfort and, occasionally, even immobility. I'm frequently short-of-breath and a few days ago I felt as if I might pass-out at my desk. I have an odd, quarter-sized scabrous growth under the hair just above my ear and another raised, discolored patch of skin at my temple. When my brother asked about it, I lied and told him my doctor said it was nothing - just a mole.

I haven't seen a doctor in fifteen years.

Now for the emotional pains: my life has become a ceaseless lie. I spend every second of every day either at work or taking care of MW while assuring her she doesn't need to be taken care of. Keeping it going is hard and constant work. Aside from lunches at the office, I haven't sat down to eat a meal in years. Around the house I'm always on my feet cleaning or providing. I get four hours on a Saturday while MW is at her part time job to do those chores she won't let me do when she's at home; such as laundry, ironing, and scrubbing the bathrooms, etc..

To my credit, I have been and am strong enough to push through the hardships. My rule around the house is: whatever MW wants; MW gets. Whatever. All she needs to do is tell me and I'll make it happen; no matter how irrational or burdensome the task. Midnight and we have to move the mattresses again because it's too dark in this room? Not a problem. I'll do whatever she asks, whenever she wants.

Because I'm not dying of Huntington's Disease. It truly is the least I can do.

But how do I reconcile this philosophy with my own failing health? Shouldn't I take care of myself so I can continue to take care of MW?

And there's the disconnect. See, I have no idea if I'm doing the right thing for MW. I know for a fact that if I were not alive, she would have to seek professional help. She cannot function on her own

Professional help. Not just me, running around on aching legs, waiting for things to get worse.

Every day I exhaust myself for the sole pleasure of watching MW succumb, little by agonizing little, to a fatal disease. Granted, there is no cure, but there are treatments. Support. By protecting her from herself, I'm keeping her from those treatments. From that support.

I don't know if what I'm doing is right; but I know I can keep doing it until I collapse. I've proven my resiliency. Still, whenever I catch a calm moment, an unbidden phrase enters my head. It speaks to the end of this toil. I hear it at least once a day. Yes, I immediately push it aside and carry on, but the words are such a part of me now, it has become like Salinger's famous Ohm prayer. Whenever there is nothing else, there is always that wish.

And so when I wake up feeling as if a metal band is being tied around my chest, I do nothing but lay and wait. If it passes, it passes. If it doesn't. It doesn't.

2016.09.07

I look back on this long Labor Day weekend and shake my head in amazement. 

We made it. For the first time in over three years, MW had family at our house and somehow we made it through. We're still going - still living the lie with no outside interference. 

Incredible.

But then, maybe not so much. Her family are terrible; just awful people. I truly believe they get a charge out of knowing she is sick. A real perverse Schadenfreude is going on with those slags.

Here's why I think so:

There were two sets of cousins in town this weekend: one from her mother's side (they are also at risk); one from her father's. For the most part, MW gets along with her maternal side relatives. Don't misunderstand that to mean they keep in touch or offer support or help of any kind, but she can talk to them without getting yelled at. Her paternal side is a different story. Three years ago when MW expressed concern that she might have HD, her father's sister called MW up and yelled at her about it. She said it wasn't an excuse for disobeying her dad.

True. 

Anyway, the maternal cousins were staying at our house; but when the paternal ones tried to contact us for a visit, I didn't respond to nor did I tell MW they were in town. I'd hoped they would just go away.

Of course, they didn't. They came over unannounced and with no invitation.

This is Texas. If I owned a gun.... Sadly, I wasn't even in the house when they rang the bell. I was out back with the dog. When I came in, MW had already opened the front door.

You can imagine the shock, fear and rage I felt when I found them standing in my living room. Maybe they saw it on my face, or maybe not; but for some reason they were unexpectedly polite and civil. The situation made MW nervous - I could tell by the hyper way she spoke and her exaggerated movements - but she did not get upset. She just went on one of her protracted rants about the evils of pharmaceutical drugs which ate up an hour of conversation. By the end of that, they'd had enough and left peaceably.

After they'd gone, MW summed it up perfectly: "They came by to see if I have Huntington's," she said.

And she was right, I'm sure. To MW's mind, however, she believes they were either still uncertain or convinced otherwise. 

But I'm pretty sure MW's conversation was odd enough; her movements disjointed enough, that they left knowing she was sick.

And God help me (and them. More them.) I honestly believe they left happy.

What can you do about people like that? I've long since given up any hope for help or even sympathy from that side of MW's family, but at least they could be decent enough to leave us alone to die in peace. It's like they can't wait to dance on our graves so they come by to wiggle their hips just to give us an early taste. I don't have the time or energy to expend much emotion on hate these days, but whatever I have goes to those fucking assholes.

The maternal cousins were much better. They were just using our casa as a landing place while they attended a wedding, so they weren't around very often. That made it easy. Also, the boy's mother is currently in the final stages of HD, so he himself is waiting for the "No Country For Old Men" coin to drop. Therefor, he is more empathetic and patient with MW. Him and his wife were good company. MW enjoyed herself around them and so the weekend was a success despite the ghouls showing up.

My gripe with the maternal side of MW's family is how they, too, try to run and hide from the disease even though it's already latched to their backs, screaming in their ears. Not that I blame them - I'm doing the same thing in extreme - but I imagine how much better things could be if everybody was open and honest; proactive and supportive instead of hushed and furtive. Maybe then MW wouldn't be so intractable against seeking medical help.

Maybe, but probably not. Nice to think about anyway.

2016.08.26

We're back to taping notes on the wall. Alexa, you bitch, you've failed me!

A forgotten candle caused this regression. MW left it burning all day then spent the night fretting about safety. Getting me out of bed at midnight to check and make sure every candle in the house was "out". Fingers to wick; "Yup, this one's safe...." Now the HD wallpaper is back with instructions to always check the candles, never sleep during the day, don't walk up the stairs wearing a skirt, always hold the handrails, etc. etc.

And once again the promise of a better life through technology has fallen short in its delivery. Oh well, I can still say "Alexa, play Cheap Trick" and get some use from the slag.

The cousins will be here in a week. I've had to take three days off from work so far just to prepare; with more to come, I'm sure. Moving, cleaning... getting the house in order. This summer has been difficult enough with the changes in MW's job and diet - I really don't need to be dealing with this shit too. I wish there was a way to talk with these people, clue them in on the situation, ask them to run all communication with MW through me first so I can plan and manage, but I know that would just make everything worse. They can't be trusted.

The grenades keep getting lobbed in our direction and I'm trying to bat them all away, but I've been whiffing too many these days. I'm exhausted.

I'm also in pain. I haven't had a drink since Sunday night. I suppose it's withdrawal symptoms, but Goddamn. Still? It's been four days. Should I still be waking up at 4 in the morning with the sweats and shakes? How much longer will my hands continue to tremble? I feel my resolve failing. I'm pretty sure I'll be crawling back into the bottle, but hopefully I can get through the family visit first. I'll need a clear head for that.

The basis for this attempt at sobriety was an especially troublesome dream. Not a nightmare, it was actually fairly prosaic - I was in a house that was being renovated so there were lots of workers around, and it was messy, and people were annoyed and busy, but the trouble was I had a hard time snapping out of it. I couldn't distinguish the dream from reality. It was a struggle to come awake. And even after waking up, it took time to sort everything out. Had I been there? Had I done those things? No, impossible. But it unnerved me to the point where I decided to try the cure again.

I went as far as checking Alcoholics Anonymous' website for meetings. Alas, my only availability to attend would be a brief lunch hour and it would have to be within walking distance of the office. No such time/place. Also, the site specified that most alcoholics need the support of their family when going through the cure. Welp. That lets me out.  

2016.08.19

Everybody at the office where MW works is crazy. They're all mentally unstable and don't know how to act around people. MW relates stories to me on a daily basis about how they talk and behave themselves - they're all on drugs! she's sure.

Tweak the following quote:

"If you run into an asshole in the morning, you ran into an asshole. If you run into assholes all day, you're the asshole."

Substitute out "asshole"; replace with....

Yesterday MW had an especially troublesome encounter. By her own admission, she was engaged in a "passionate" conversation with her boss about getting some training. And as we all know, MW talks with her hands. Anyway, during this impassioned discourse, the trainer snapped at MW: "Don't you point your finger at me!"

MW was stunned and saddened. She apologized then went off to cry.

In my mind's eye, I can see the situation very clearly. It is the chorea coming out, as it will, during moments of high emotion.

What I told MW, however, was that the trainer must have some personal problems. Probably is on drugs - most everybody is these days. She shouldn't worry about it. Still, no point working at a place like that. They sound like very unprofessional people. MW should turn in her resignation and take some time off. Maybe go back to school; or just relax. Life has been stressful lately. Time to take a break.

Yes, I want MW to quit her job. I lose control when she goes off to work - even if it is only part time hours doing fairly simple and repetitive tasks. I've long feared someone would say something to MW that would push her over - this is why I encourage her to stay away from her family - and "Don't point your finger at me!" when MW is only exhibiting typical HD behavior is too goddamned close for comfort.

But, of course, I understand that without a job, MW would have more time to sit around and think. This could also lead to trouble.

Yet another in the endless parade of lose/lose situations.

Yesterday, when MW hung up the phone, she said she was going to resign. Yay! When I got home, however, she said she couldn't do it. She doesn't want to feel like a failure.

Okay then. Moving on....

2016.08.09

MW's cousin and his wife are coming into town for a wedding. During the past three years, whenever a friend or relative has contacted MW about visiting, she's always made some excuse not to see them - we'd be out-of-town or we have the flu or somesuch.

This time, however, she asked them to stay at our house for the weekend. And they said yes.

Great. So now what the fuck do I do?

My first thought was to contact them behind MW's back and ask them, please, don't come; but I couldn't trust them not to turn around and call MW back to bitch at her about it. 

Also, MW seems excited about seeing these family members as they aren't part of the branch that she's totally cut off. So it would be pretty awful of me to keep them apart.

Still. What the fuck am I going to do? Already MW is worried about how she's going to sleep and eat when they're here. Right now she's sleeping on a mattress on the floor of the sitting room surrounded by sofas so she can't bump her head, but she can't let them see that. It will all have to be moved. But she can't take it upstairs because she might trip going up and down; plus it's too dark in those closed off rooms. Currently the thought is we just won't sleep the two days they're here. I guess that might work. 

And then there's the food situation to consider. This summer has been terrible for MW's diet. Already two of her staples - a frozen meal and a particular type of fish - have been discontinued from the grocery store. Finding replacements has not been easy. It is a lot of trial and error and, literally, visiting every grocery store in our area looking for that one, specific meal. Yeah, I did go on-line to check, but MW doesn't always trust the internet, so.... What if, when her cousins are here, she can't find the food she needs? They can't know that her diet is so rigid, so how will she eat? We won't be able to spend the entire day driving from one store to the next searching for food if they're with us.

Also, let's not forget the messy house. MW can't let them see how we live, and that's going to be extremely difficult to deal with. She did call a plumber to replace the dirty toilette, so that'll be okay; but what about the rest of it? We can't replace the entire house.

But above all this, my biggest fear is that something dangerous will be said during their visit. It might be well-intended - "have you lost weight?" - which, even though said to be kind, would still send MW into a spiral of fear and doubt. Worse, however, would be if they ask MW about her other family relationships; "Why haven't you seen your dad in three years? Why aren't you talking to your brother?"

This could lead to a conversation with disastrous consequences. No overstatement. If I'm not around or unable to redirect these types of inquiry, it could end.... everything.

I do not trust any of MW's family members. They are willfully and cruelly ignorant of the symptoms of Huntington's Disease. In the past, when MW first expressed her concerns to them, they responded flippantly, then turned to belligerence when she wasn't placated by their platitudes. 

Fuck 'em.

Now the cousin coming to our house is younger and, I hope, more tactful. Indeed, he is the child of MW's aunt who also has the disease. He, apparently, made some waves when he married outside his religion (a Hindu girl!) and rumor has it he's given up faith in God. Something about what kind of God would allow this! I've got an answer for him, but he probably wouldn't like it.

Anyway, he's also smart as a whip; an Emergency Room doctor, and, as I said, much younger. So I doubt he would go off on MW about her behavior, at least not deliberately, but the fact that they have a shared family history is causing me great anxiety. And it's not just a one-way street. MW has a tendency to take conversations to strange places. She may push him into a corner where he has no choice but to talk about things best left unsaid. 

I can't control what he'll say. And that scares me to death.

2016.07.29

When taking care of someone with HD, life becomes skewed. Even away from home, I have to check my behavior towards coworkers. Regular conversation and interactions have become tricky for me. I've grown used to my role as a caretaker and it permeates throughout.

It isn't necessarily a bad thing - in fact, at work I'm often praised for my patience - but sometimes I earn a "what the fuck?" expression for being too attentive or servile. Also, since a significant part of dealing with early onset dementia is trying to calm the chaos, I can be overly Pollyannaish when break-room talk turns to personal hardships. "Well, at least you're not dead," are words I've had to stop myself from saying on numerous occasions.   

And then there are those wonderfully bizarre occasions when real life becomes as absurd as HD life. These are the times when I don't feel quite so bad for all the dubious behavior and lies I've used to shield MW from the truth.

Recall earlier in the year when MW was looking to buy a new house because our current house is dirty? Anyway, around that time they were building out an area in our subdivision, about two blocks away from where we live. MW visited the builder frequently, even got approved for a loan, but in the end decided she couldn't buy one of those houses because they were located off a through street. She said it would be too easy for a car driving down that street to lose control and crash into any of those houses. Not worth the risk.

What should I have said? "That's nothing to worry about, dear. The street itself is less than two miles long, the speed limit is 30 mph, and there is a stop-sign at the middle intersection. Even if a car did lose control, it wouldn't be going fast enough to break down the fence and cross the sizable back yards of those houses. If you're interested in moving into a house there, you shouldn't let this unreasonable fear stop you."

Of course I didn't. I agreed with her. I said that was a wise and smart decision as cars are always losing control and plowing into houses. Happens all the time.

And by doing so, I helped prevent her from buying the new house she wanted. And I felt like a total asshole, too.

But this morning? A car lost control and rammed into one of those houses. No, seriously. Just like MW said it would. A mini-van banged down the fence, tore up the back yard, and smashed right through the wall of the master bedroom.

News helicopters parked over head broadcasting the drama; an ambulance for the people living in that house who were cut by flying glass and life-flight came and whirled away the severely injured driver. Interviews with police worried that moving the car might cause the whole house to collapse because of structural damage. It was quite an event in our sleepy little subdivision. 

Well now. Maybe I'm not such an asshole after all.

2016.07.08

Last week MW cut her toe, nobody is quit sure how, but when I was helping her remove the Band-aid, I had a thought that I might keep it, send it to a lab, and have them analyze the blood for HD; not to confirm the condition - that ship has sailed - but to find out her repeat number.

Yeah, I know it doesn't really matter, but I'm intensely curious. I understand the mutation tends to be worse on subsequent generations, and I remember during the early stages of my mother-in-law's HD journey it seemed like somebody tossed her off a cliff. From walking, to wheelchair, to bedridden in three blinks of an eye. 

Of course time was different back then. We were young. Life moved fast. Nevertheless, I've been writing this journal for almost three years now - three - waiting for MW to go over that same cliff, but no. There she is on the ridge, still pacing back and forth.

In keeping with the analogy, when I'm around, I can walk with her, try to steer her away from the edge; sometimes it seems more like dragging than steering, but we're functioning. Its when I'm not at home....

A few days ago I called MW to pick me up from the bus stop. This is our normal routine as she will not let me drive a car. She insists on dropping me off/picking me up. Anyway, she didn't answer. Half an hour, an hour; no answer. You can imagine the dire thoughts crowding my mind. There are no friends or family I can call for help; so should I call the cops? Is it really 911 if your wife hasn't picked up the phone for an hour?

Eventually, MW calls my cell. Turns out she just fell asleep and didn't hear the ringing.

What a relief!

Then, when we get home, there's a terrible burnt smell all through the house and she admits that she fell asleep with something cooking on the stove.

...

Okay, no big deal. Mistakes happen. Let's just keep strolling along the edge. 

2016.06.23

Caring for someone with Huntington's Disease requires a committed team of doctors, therapists, friends and family. 

Right. MW has me. That's it. And I'm kind of a fuck-up.

However, last week I brought on board a new teammate - Amazon Echo Alexa, a glowing cylinder which listens and talks and reminds you about calendar appointments and to-do lists. 

I've never really put much faith in technology - in my experience the "garbage in, garbage out" axiom proves true more often than not - but I must say I've been pleased with Alexa so far. All MW has to do is say her name then follow with a task: "Alexa, to do list, clean the bedroom" then, later, ask; "Alexa, what's on my to do list" and she'll get a run down of everything on the list.

So now, instead of the dozens of sheets of paper taped up all over the house, there is just one note taped up in the most frequented rooms that reads; "Ask Alexa"

Nice. 

And, not only is this good for eliminating the HD wallpaper, it also serves as a sort of speech therapist. Alexa is pretty sharp, but you still have to talk clear and concise when giving instructions. Huntington's victims often slur and stammer when speaking, so MW has to concentrate and work a little to get the words out right when dealing with Alexa. I feel this is good practice for MW.

And later I can log into the computer, access the list, and clean it up so it makes sense.

Finally, a little help.

***

Unfortunately Alexa is no help whatsoever with pest control. Yesterday morning MW saw a tree roach in the bathroom and we are all still dealing with the ramifications. Last night we didn't get much sleep because MW kept changing beds, terrified that there might be another roach somewhere in the house. Recall that the only place she feels comfortable sleeping is the sitting room where we've lined the walls with sofas and blankets tacked up to filter out lights. Well that room is adjacent to the bathroom so it was a no-go last night. Instead, she tried to sleep upstairs. 

When that didn't work (too much light; also, afraid of waking up groggy and falling down the stairs) she came back downstairs. 

However, visions of roaches soon chased her upstairs again. 

Eventually she wound up sleeping in her usual place, but by then it was one in the morning. I was exhausted. Note that every time she moved beds, I not only had to move all her pillows/blankets, I also had to move the TV and cable box. MW needs TV to fall asleep. I probably made around 20 or 30 trips up and down the stairs carrying heavy loads each time. I imagine it would have hurt my hernia more had I not been pretty drunk last night; so there's the silver lining I guess. 

This morning MW was still complaining about the roach, which means we'll probably be doing the same thing tonight. Alexa, to do list, buy more wine. 

2016.06.13

Oddly, MW's mental functions seem to be... not improving, not necessarily, but she is functioning rationally at a slightly more elevated level than usual. Meaning, she's getting shit done around the house; hiring people to clean, starting home improvement projects, even making plans to meet with friends. This part is encouraging, however, as if to mitigate any feelings of hopefulness, I've noticed an increase in the severity of chorea. She constantly drops things, it's impossible to hand her stuff and when she tried to give me something I have to grab it like I'm snatching my lunchbox from a teasing bully. 

Also, I'm certain she'll quit her part time job soon. They are transitioning her to a new department and she's nervous about the work. And in subtle ways, I'm encouraging her to quit because I'm afraid somebody at the job will say something about her behavior or appearance that'll set her off. Just another of those HD "no win" situations: if MW doesn't have a workplace to go to, co-workers to socialize with, that's more time for her to sit around the house going crazy; but if she does go to work she's exposed to external factors I can't control. What's the right thing for me to do? 

Drink.

And that's another problem - now that MW is moving to a new department, even if she stays at the job, she won't be working weekends. I will never be able to drive to the liquor store again. So now I'm pretty much a the mercy of the CVS next to my office; wine only - and I've reached a level of sophistication where wine, yeah, doesn't really cut it anymore.

2016.05.16

Is it possible I am dealing (or trying to deal) with "survivor's guilt"? Because unless something untoward (or incredibly lucky) happens, I know MW, my partner, will die within the next ten, maaaaybe twenty years. Where will that leave me? A survivor. With guilt.

Survivor's Guilt. The term connotes war. So does it apply here or is it an overstatement? Interesting question.

Anyway, that latest weapon in the enemy's arsenal is uniquely wicked: last night MW accused me of trying to kill her. Poison her, to be exact, by putting Clorox in her drinking water.

She came to this conclusion after sniffing her bottle and deciding it smelled like Clorox. Of course, I'm the one who washes the dishes; also, I'm the one who always fills her bottles, ergo, I'm the one who poured bleach in there.

It was odd in that she really was worried about it, asking me numerous times why the bottle smelled like Clorox. Since I was driving, I couldn't stop to smell it, but I just shrugged and said "dunno". After awhile, she asked if I was trying to poison her. I laughed, thinking it was a joke.

It wasn't.

When we got home, I sniffed the bottle: not anything close to Clorox - possibly a little soapy because it hadn't been rinsed thoroughly (mea culpa) - then I drank it all to show it wasn't poison, but the damage had been done.

She seriously thought I was trying to poison her by mixing a little bleach in with her water.

It didn't turn into one of those disastrous, protracted situations, but it was worrisome. At one point she tried to back out of it, telling me that she had only been joking, but then she went on about how she thinks those kinds of thoughts because she watches a lot of TV and husbands are always killing their wives on TV.

I told her not to worry about it; I hadn't taken her seriously. Also, I understood where she was coming from - TV is pretty terrible - and, most importantly, I hadn't been - nor would I ever - try to kill her.

It blew over fairly quickly, but that was some next level shit. It isn't easy taking care of MW under the best conditions. If she starts thinking of me as "the enemy"...?

2016.05.09

Today's lesson: How to succeed by fucking up.

Since the knee buckling incident, talk at Casa Muncie had been whirl-pooling around HD like a sink that won't drain. MW would not/could not stop obsessing over the possibility of her having the condition. My job, then, was total reassurance that she does NOT have it. It is, after all, impossible to self diagnose the condition. You have to be tested for it, otherwise you'll never know for sure. So, if you won't get tested, the best thing is to just live like you don't have it. Yes?

Over and over and over again. Constant reassurance. But the interrogation... the never ending questions. Hey, if you need to know just how great a liar I've become, here's a few samples:

MW: "You've studied HD. Knee buckling is not a symptom?"

Me: "Right. Knees buckle on everybody, all the time. My knees buckle all the time. I don't have HD, so...."

MW: "Then what are symptoms of HD"

(We'd spent 15 years watching her mother go through the process. She knows good and goddamned well.... never-mind)

Me: "There are no symptoms. You'll never self identify symptoms. You can't self diagnose the disease. You just have to live your life like you don't have it."

MW: "My mother couldn't walk a straight line. Should I try...?"

Me: (blocking her path) "Wouldn't prove anything. Lots of people can't walk a straight line; when they've been sitting or as they get older and their legs get tired. Whenever I stand up, I stagger all the time. 

That last part's no lie. I'm drunk all the time; so, yeah, I stagger. Want more? Here's another:

MW: You would tell me, right? If you thought I had it?

Me: Of course.

MW: Because if you thought so, we'd have to sit down and talk about how we would manage it.

(Crash! Boom! Bam! Is this the opening I've been waiting for? Should I tell her, yes, oh my yes, she does show symptoms and we desperately do need help? No.... no.... hold on a moment. Let's see where she takes this first....)

Me: Right

MW: But my mother didn't show signs until she was in her late sixties. So I have another twenty years left, even if I do have it. I wouldn't want you to tell me if you thought I had it. 

Me: You don't show any symptoms. You don't have it.

That last one? That last lie? Breaks my fucking heart. MW brings up the fact that her mother wasn't diagnosed with the disease until she was in her late sixties like it is a touchstone; like it's a talisman. Protecting her for at least twenty more years.

But I have studied the disease. Huntington's is called an "anticipatory" gene. That means subsequent generations experience its effects earlier than their predecessors. MW doesn't have twenty years. At this rate, she might not even have two.

That's a lot of slag for one man to carry. Hence the drinking.

Which brings us to the point of today's lesson: The fuck up and the triumph.

Last weekend I was down to just beer so Saturday, as soon as MW went to spend six hours at her part time job, I tore ass to the liquor store. $100 lighter, but heavy with bottles, I raced home and popped a cork. I told myself only one bottle, as MW would be home in the afternoon and I had plenty of chores to do around the house before that happened. See, some of these chores (laundry, changing light bulbs, washing dishes, cooking, etc.) I'm not able to do when she's around, so I have to be sneaky about it. Anyway, one bottle didn't last long so I figured two couldn't hurt. Hell, my tolerance? I could handle two in six hours. Easy.

5:00 p.m. MW comes in and finds me passed out on the computer chair with Dio blasting from the speakers.

There's the fuck up.

Give me credit, though, I had finished the chores, including hiding all the booze and disposing the two empty bottles, so all she saw was me dozing.

Explain that without using the words "drank, drunk, drink."

Turns out my clothes were in the drier, but that's no excuse for zonking off while sitting in a chair listening to heavy metal music.  

Now comes the triumph.

MW was so upset by this incongruous behavior, she has totally forgotten about her knee buckling and HD. Now she's sure I suffered a small heart attack or stroke or something and is obsessed with the thought of me passing out and burning down the house because I left the stove or the drier on.

Small triumph. And there is a downside in that MW no longer trusts me to be at home by myself so she didn't go to work on Sunday and will probably quit her job before next weekend. 

Also, I felt compelled to throw all the liquor I'd just bought away because clearly it is time to step back for a while. 

And here's some more comedy for the alcoholics: ever try to toss $100 worth of booze away on the sly? Not easy, right? It's pretty heavy. And As soon as I lift the garbage bag from the trash barrel, I notice one of the bottle necks has poked through. Goddamnit.

Quickly try a double bag. Nope. Same bottle neck sticking out. Double Goddamnit.

Whatever. Just haul out the barrel and let the garbage men deal. Ah, but it is windy and rainy and as soon as MW sees the barrel on the yard, she tells me not to leave it there. It'll blow away or fill up with water.

No, I assure her, no, the rain and wind will stop soon. I saw the weather report.

Lie, lie, lie.

And, of course, after diligently purging the house of all booze, last night I discover a bottle I'd missed in one of my old hiding places. Sheeee-it.

2016.04.29

Three days ago, MW went for a walk. Her knee buckled and she twisted her ankle. She calls me while I'm at work, desperate panic in her voice: "Is it HT? Is it HT?"

Three days now I've been hemming, equivocating, obfuscating - well, hell- just flat out lying. 

"No, of course not. Not HT. No way."

(recall HT is what she calls HD)

And I'm back in the box, being sweated by Pembleton and Bayliss. The questions come fast, they are demanding, they circle back on themselves:

"Is it HT?"

"No."

"Why not?"

"It's just not."

"What is?"

"Well. You can't self diagnose it. The only real diagnosis would be to get tested."

"So there is no way to tell if you have HT?"

"Right. Without testing."

"My mother couldn't walk a straight line. That's how they tested her. If I can't walk a straight line, does that mean I have HT?"

"No."

"Why not?"

"Because there are many other reasons you might not walk a straight line. Not paying attention, you know. Whatever. Lots of people don't walk straight all the time. I don't walk straight all the time."

"But you don't fall either. Your knees don't buckle."

"My knees buckle all the time. I'm old. It happens."

"It never happened to me."

"Well, you're older too."

"So having your knee buckle isn't a sign of HT?"

"Of course not."

"You're saying there are no signs of HT?"

"Right. Not without, you know, testing. Everybody stumbles some times. Not everybody has HT."

"So what would be a sign of HT?"

"I.... nothing. There are no signs of HT. It can't be self-diagnosed."

On and on and on. Three days straight. And while I'm being grilled like a murderer, I have a flash of sickening insight: I could stop this. I could end all of this confusion and chaos. Just a few words from me and it would all be over.

And MW would be absolutely destroyed. Irredeemably, irreparably destroyed. 

One person should not have that power over another. Certainly not I.

***

Here's one for the drunks - a little slapstick the alcys will appreciated.

Set up: I drink a lot, but on the sly. Also, because of MW's - call them peculiarities - about cleanliness, I'm only allowed to drink out of one cup - a tall, grey plastic tumbler. At night it is usually full with some gutter booze concoction of my own creation, but during the day it will be water (the only thing MW allows in the house to drink). What happens is, when I come home from work, I guzzle whatever water is left in the cup to make room for the booze that I'm going to sneak from the upstairs closet. 

Yesterday I came home, found my cup nearly full of water, gulped it down with two, maybe three breathless swallows and run upstairs for the good stuff. 

Then MW hollered for me to come down. A bunch of chores to do before I can even change: wash dishes, put dog out, get food ready, talk some more about why a knee would just buckle like that.... By the time I make it back to the closet, I notice my cup is near full of (I think) water. Two fast gulps and - 

Ho Shit! I'd actually already poured vodka in there before getting called away. 

Damn near blew the top of my head off.

It was a fun night.

2016.04.03

I made it! I lasted the full 40 without drink. My "spite lent" a success!

Of course that was a couple weeks ago and I've been, yeah, fairly drunk ever since.

Remember when I said I was putting off dealing with buying a new house (this one is dirty) because I thought, assumed, hoped I would be dead before my credit came through? Well, fuck it all, that didn't happen. MW applied for credit last week and, hey hey, I was approved! $350,000 to buy a new home! Hell, yeah, let's go! Let's mess up some place fresh - this dump has too much peanut butter smeared on the walls, too many sections of paint ripped away from so many "reminder" notes taped just everywhere. Too many vitamin pills, popcorn, and clumps of boric acid gathered in the corners.

Whoo Hoo! A shit load of debt on my back! I'm maybe two, three,.... five? One? years away from having to place my wife on disability and finding out some way of managing full time care. But, sure.... The counter tops really are dirty. We should move.

Oh God. What the hell am I doing?

Another drink. That's what.

Do I still need to explain? After all this? Okay, the peanut butter is from MW sloppily smearing it on her toast every morning then setting the plates wherever her erratic hands find to land. Kind of like people who keep chickens wondering how chicken shit gets everywhere - I find a big blob of peanut butter stuck to the wall and foolishly ask "how...?" MW laughs it off. She doesn't know, but hey, shit happens. When I ask if I can clean it - no, of course not. She'll take care of it. I can't clean anything because I'm incompetent. That was weeks ago. The peanut butter is still there.

The bathroom wall looks like modern art. MW writes copious "reminder" notes and sticks them there - where she's sure to see them - on a daily basis. Some of the notes: "Don't turn on the car until the garage door is open." "Park safe". "Renew PO Box" (okay, that one gets a pass). Anyway, these notes are taped/tacked up by whatever is available. I made a few rolls of masking tape available so it isn't as bad as it could be, but still... There's a lot of wear on the paint. Finally, MW has a real tough time navigating the "from hand to mouth" journey. Daily vitamins and her recent addiction to popcorn have caused the floors around here to look like we're living in one of those "pop-stick" toys.

Oh, and the boric acid is an ever-present condition of living in the dirty, cockroach south.

And, again... I'm not allowed to clean anything. I'm not even allowed to pick up the errant vitamin pills because they've touched the floor. If I touch them after they've touched the floor, well, the transitive properties of dirt means I've just as well touched the floor with my bare hand. That would be cause for amputation.

You can see why the easiest solution is a new house. Of course you can.

So every free moment is spent driving around, taking down phone numbers, talking to real estate agents. My only drunken hope is, given MW's inability to make decisions, we'll just keep spinning our wheels like this until.... Until.....

The drinker's hour. Four in the morning. I see it every day now. I push myself off the mattress, mentally tell myself - "steady on, Norway. Steady...." and sit on the toilette until the world stops spinning enough for me to navigate back to the pillow. On those rare nights I'm not sweating the sheets waiting for the alarm clock's warning, I hit a wall of nausea and palpation at around six or seven. Heart attack? Stroke? Worse? So far, no. So far, it passes.

So far.

2016.02.21

Last week MW visited some friends who came in from out-of-town. It was a pretty exceptional event, actually, considering there were half a dozen young - some very young - children at the gathering and they were coming from up North. MW has been steadfastly avoided young children and northerners for nigh on three years now (afraid of catching a cold), but she found the courage this time.

Good. She should be spending as much time as possible with friends.

So that was a positive; and to balance it with a neg., MW has become obsessed with moving (our house is dirty and, at this point, it'll be easier to move than clean it). Yes, I still have three months grace while I build my credit by using a Visa card, but after that? My back's to the wall. I'll have to make a very bad financial mistake. Unless I don't last the three months.

That's become my thing: if it's not going to happen within the next few days; fuck it. Ignore it. Hell, something might happen and I won't need to deal with it at all anyway.

That hasn't panned out yet; but it will. It has to.

The only future event I am anxiously waiting for is Palm Sunday. I just looked at the calendar and, Christ, four more weeks? Can that be right? Seems like a long time.

I was a fucking idiot to give up drinking for Lent. And I'm even more a lamebrain for sticking with it. What am I thinking? At this point my religion is based entirely on hate. I can't remember the last time I've thought or said the word "God" without immediately suffixing it with "Damnit". Yes, I told myself it was all about the nostalgia - a return to my Catholic childhood - but there were other alarm bells ringing around the bottles, too. I had been making mistakes at work and at home. Still, deciding to do 40 dry days and nights? Man. Man oh man. What a mistake!

A few days ago I had a dream where I was drinking vodka. It was so vivid, in the morning I felt terrible about breaking my Lenten fast. It turned into one of those mental breakdown situations where, even in the light of day, I couldn't remember if I had or hadn't drank vodka. It wasn't until the afternoon, when the fog finally lifted, that I realized I couldn't have possibly had anything to drink as there is no alcohol in the house.

I have enough troubles without this bullshit. I haven't been to Church in decades. Why did I commit to a stupid fast? And why am I still holding it?

Goddamn it.

2016.02.14

In his autobiography, Carrying the Fire, Michael Collins observes that while piloting the command module across the dark side of the moon, he is abruptly cut off from all human contact. He is separated from all humanity - indeed, every living thing - his is the only known life on that side of the moon. The isolation doesn't last very long, but it is something that clearly gave him pause.

I feel you, son.

And here's another wry observation from the dark side of HD:

Having crazy friends can be a comfort when you're dealing with early onset dementia.

One of MW's friends is a real mess. Nothing exceptional; just the typical noise about bad relationships, "hormonal" issues, and prescription drugs. Anyway, talking with this friend always puts MW in a good mood. After hanging up the phone, she will smile and say, "Well, at least I'm not as bad as J.!"

Indeed.

In other news, I've taken my obsession with nostalgia to the next level. Yes, in my continuing efforts to live the past, I've decided to participate in the Lenten season. See, as a child I used to give up candy for 40. And the whole fish on Friday thing too. It was a pain in the ass, but Catholic is as Catholic does, and I spent many a Spring season rolling Cadbury eggs around the table, waiting for Easter.

Not much point in giving up candy now; and there is no way I could get away with changing my diet, so the only thing left for me to even try and recapture those bittersweet memories is to shitcan the booze for a month and change.

And so I have. Today marks the fifth day without a drink. 35 more to go.

It was time to dry out a little, anyway. I was taking the curves with only two wheels on the rails for a while there.

2016.02.07

I get a few hours away from the grind. I drink. I blog.
I'm listing to "Church of the Holy Spook" cranked to 11 and feeling like shit.
I have to cap the bottle soon. That is depressing as all hell.
I'm not a good man. I'm not holy. I've never once even tried to walk in Jesus' footprints.
But I've never done anything evil. Not truly evil. Careless? Reckless, even? Thoughtless? Sure! Yes. I've been bad. Many times I've acted without regard for the health of my soul (whatever that is) and I'm still constantly fucking up everything... just, everything.
I'm not good.
But. Godamnit. I'm not bad either.
I've never once deliberately gone out and harmed anybody or anything. Oh sure, I've notched plenty of sins of omission and fits of passionate rage in my belt. Still, I've never made a decision - or at least I cannot remember (drunk as I am) ever made a conscious effort to fuck anybody. I've never acted with hostility or malice.
Nor, I must say, have I ever done anything to help anybody that would cause me undue discomfort.
I'm middle of the road right down the line.
Except, of course, MW.
I've given my life to MW. Everything to her. Hoping against hope that it would pay off in the end.
It hasn't. It won't. It's just getting worse. And it will not, can not, get better.
I'm exhausted. I've sacrificed damned near everything I have except the blood from my veins. And every day I get to look into the abyss and see that it is still hungry.
Demanding to be fed.

2016.02.06

Yet another from the files of "...an HD thing; you wouldn't understand."
It takes MW fifteen minutes to brush her teeth. What it is, you see, is an abiding fear of sugar. And chemicals. And chemicals that effect sugar. Anyway, she can't use toothpaste because of the sweetener, so she buys an organic mouthwash; pours a dash in a cap, dips in her toothbrush and goes to town. However, even though it is organic, it is still somewhat sweet to taste, so after every brush she crams a fistful of toilette paper in her mouth and rubs it around to absorb the "sweet". And she rinses and spits a lot as well. A time consuming endeavor.
Yesterday morning she spat and - lo! - mixed in with the mucus and saliva was a tinge of red. Blood? BLOOD! MW fell into an absolute panic.
"I'm going to die. That's it," she kept saying. "I'm going to die."
Let's take a break in this narration and travel back in time; twenty years ago when MW's mother was first diagnosed with HD. One of my mother-in-law's constant complaints was a fear of cancer. She wouldn't go five minutes without slurring out the word "Cancer! Cancer, mully. Cancer!"
You can only reassure someone so often before patience departs and you're left with hostility. As an example, MW used to tell her mother - after spending the better part of a day explaining to the lady that she did NOT have cancer - that she would, in fact, be "lucky" to have cancer. That cancer would be a lot better than what she has.
Cruel, yes. But it was a cruel household into which I married. Although one suffers to stand by and be silently complacent in such base inhumanity, tales told of the abuse and neglect under MW's father's roof kept my tongue still. I may have told MW to calm down - I recall I was frequently trying to calm her down in those days - but I never forbade her from telling her mother how much better off she'd be with the big C.
Fast forward a couple decades and here we are again. MW has cancer. She has cancer. Cancer! Cancer, mully. Cancer! Over and over again.
And, God help me, in my mind.... In my mind. In my mind I say, "Yeah, you should be so lucky."
Of course I don't. No, I use my usual trick - Oh, I always cough up blood. Happens to me all the time. Look, if you want, I could cough up blood right now. See, what happens is, when the weather changes your nasal passages dry out and, well, there can be blood in your mucus. Did you want me to cough blood now? I can, you know. I cough blood all the time.
Had she asked me to, I'd've bit my inner cheek and spat blood. Easy.
Eh, not so easy. You remember that show Homicide? Where they would get a suspect in the box and trip up his testimony with an endless barrage of contradictory questions? Well Andre Brougher's got nothing on MW. I get a phone call from her while I'm at work and for thirty minutes I'm sweating under the hot lights:
When was the last time you spat blood?
Pretty much every day when I sneeze there's some blood there.
But that's when you sneeze.
Right.
What about when you spit?
Well, it's all connected.
When was the last time you spat blood?
Oh, I don't know.
Five years ago? Last year?
I can't.... I can't. I don't normally spit. I normally sneeze.
So how can you say you always spit blood?
I.... It's all connected, you see. The nasal cavity....
So you don't always spit blood?

It's an HD thing.

2016.02.03

So our dog died. Specifically, we had the vet put her to sleep. She was thirteen years old, diabetic, blind, had cancer tumors all over her belly, bladder stones, a UTI, had turned her back on God, and couldn't eat any more because of ketosis - or so the vet said after having spent three days and close to $4,000 keeping the poor thing alive on two IVs stuck in her little paws. At that point, the vet also said euthanization would be a "reasonable" decision.

What a clear-eyed assessment of the situation.

Of course, as the dog had been MW's only constant companion for these last thirteen years, it was a ridiculously hard decision for her to make. Understandable. Now let's run those emotions through the filter of early onset dementia caused by HD and you're set up for some good times. At the vets office, it was almost a comedy routine with MW handing the dog over, then snatching it back; handing it over, snatching it back.... Eventually I gently, but firmly, dragged MW from the room - sobbing uncontrollably.

Right, I know, that's not abnormal behavior. Losing a beloved pet is hard. This happened at an emergency pet hospital (hence the high, high price tag) so we saw lots of weeping people biding their four-legged companions a bitter last farewell. I don't fault MW at all for that.

It's what happened next that is costing a heavy toll.

We gave our dog peace on Saturday morning. MW immediately got on the Internet, found a breeder in Dallas, and arraigned to go pick up another dog. I advised against it; explaining that we needed grieving time, but really just trying to buy more time to get the house back in order after having lost those three days of maintenance to the doggie death watch. No joy. She had to get a dog. We had to drive to Dallas. Four hours there; four hours back.

MW spent those 8 hours on the road fluctuating between wailing tears and talking about the mysteries of death. She talked a lot about her mom - her father having had made a similar decision to pull the plug and euthanize mummy after she contracted HD's favorite killer, pneumonia - and how unfair death was. She started in on how much her mother had wanted to live and how she would never have done what her father did. She informed me that I should do everything in my power to keep her alive no matter what. Oh, and also? I should never put her in a nursing home. She would hate that.

She asked me what I thought about it and I side stepped the issue. What she doesn't know is that I've already drawn up a Medical Power of Attorney, give that responsibility to my brother; then sister (not MW) and explicitly specified NO RESUSCITATION! WITHHOLD ALL LIFESAVING MEASURES! I'm looking for death with dignity even it it's just a goddamned hang nail.

Or a hernia. Driving four hours straight, no breaks, played holy hell on my hernia. Gave me a righteous headache too. MW drove some of the way back, but I insisted on taking over when she started bursting into tears going 80 down I-45. All in all, a very painful experience.

And at the end of all this? We now have a new puppy! Yay!

Except not so much yay. Puppies are a lot of work under the best conditions. Now put a puppy in an HD house where the dementia is making itself known primarily through hypochondria and germaphobia. Since Saturday I've lost five pounds and haven't had anything to drink. I suppose the not drinking might be a good thing, but the weight loss is pure stress and sleeplessness.


The puppy is a teacup MalteePoo. Smaller than my foot. But I'm not allowed to pick it up from under it's belly because I might get pee on my hand. The puppy can never be left unattended on the floor because it might pee somewhere. Also, it might eat something bad that MW has dropped on the floor. (MW is always dropping things on the floor. She knows this; hence the rule about the dog's paws never touching our floor. You might ask why she doesn't just pick whatever it is up when she dropped it.... It would be a good question.) When we're not directly supervising the puppy, he must always be either in its kennel or playpen. The puppy, naturally, doesn't like this so it whines constantly. CONSTANTLY! Not one moment of peace in the house since Saturday night.

Puppies have accidents. Every time our puppy has an accident, something expensive get thrown away - a carrying case; a blanket, a towel. Whatever got pee on it. Pee can't be cleaned, you know. It has to be destroyed! You may ask why we don't use those pee pads? Well I suggested it; but those are no good. They just allow for the pee filth and germs to have a home. No. We have to use blankets and towels and they have to be thrown away with prejudice once contaminated.

And this is just a sample of the germaphobia. Let's briefly touch on the hypochondria, shall we? Since the puppy has been in our house, MW has been anxious about catching ringworm, tapeworms, and that one disease dogs can get that they pass on to humans (I have no idea what this could be, but MW knows what it is; she just doesn't know the name of it).

Here's a sample of how it has been around Casa Muncie these last five days:

I'm sitting outside with the dog. This, I admit, is good. Weather is fine this time of year and it is always fun watching a puppy romp - catch leaves, tugging flip-flops twice his size around the yard, getting in fights with pill bugs and losing because he's so small.... Then MW calls for me to do something in the house. I pick up the dog and go in. NO! I can't hold the dog! Now I have pee on my hands! So I try to put the dog in his playpen. NO! The playpen is wet because the dog spilled water! So I try to use my free hand clean up the water. NO! If the dog stepped on pee earlier, the water in the playpen is full of pee, too! I'll have to use a glove. But I can't put on gloves while holding the dog; and I can't set the dog down, so I'm stuck. Then, angry, MW comes over to clean the playpen. Finally I can set the dog down. Once down, the dog immediately starts whining, loud. So loud, I can't hear MW as she continues to ask me to do things as she's storming around the house. I follow, asking questions, which just pisses her off more. She's yelling, the dog's whining, the house is in shambles because I haven't been able to clean anything. On and on.

I'm exhausted; even more so than usual. The only thing I can do is constantly remind myself that this will, most likely, be MW's last dog. Have to make the best of it.

2016.01.23

Seems like death is everywhere these days. David Bowie, Glenn Frey.... Lemmy. Angus Scrimm. So far Roger Waters is still hanging on, even though he's the one who figured out the pros and cons of it all way back in the 80s: "Why prolong the agony? All men must die."

All those listed but Scrimm died in their late 60s; like my dad.

Maybe this is a return to the normal life span. Geezers living to almost 100? What's the fucking point? Seems like we used to die off around 60/70. Makes sense to me.

But then again, for me, that's another, what? Twenty years? Errr.
 
My sister-in-law has, what appears to be, an inoperable brain tumor. I spend time with her children - my niece and nephew - and they avoid talking about it. Just as I avoid talking about MW's Huntington's Disease. Vague, oblique references to the "uncertain" future. Uncertain.

Fucking DEATH! There. That's the future. What's so uncertain about that? My sister-in-law with a brain tumor? She'll see her son graduate in 2016. Her daughter's 2018 graduation? Toss a coin.

Every time I think I've hit rock bottom, I break through another level. But come on; this has to stop. We've long since gone beyond the testing point - God pushing Job's nose in for giggles - fine. I'm still here, aren't I? And I'm willing to tote the barge for the duration - at least as long as the hull of this alcohol fueled tugboat holds back the water - but my sister-in-law? Unfair. Life? Unfair.

And, just as with my father, I am sick with worry about my sister-in-law's health but, always there in the back of my mind, are the disgusting, guilty thoughts that, hoo boy, if she has to be admitted to a hospital? Or when she dies and we have to go to the funeral? Man, dealing with MW through that is going to be absolute misery.

I wouldn't say I'm drunk now. I'm certainly not sober; but I'm not blind either. MW is out of the house now so I can write without interruption. I should be doing something better than this - pissing and moaning - but I've had a... revelation? No. A theory? No. Not even so deep. Let's call this an observation.

I'm a lapsed Catholic with a hate hard-on for God. Sure, MW has Huntington's Disease so that accounts for it, right? Indeed. But let's be honest - as soon as I left my mother's house and could stop going to church every Sunday - I did stop going to church every Sunday. I slept in. Now I'm the caretaker of a woman who is dying by fractions of inches and I can do absolutely nothing to stop the progression of death as it greys away all life from her skin, her hair, her lips and her mind. Her soul.

My brother is a Lutheran. I know, right? We were raised Catholic and he - heh - became a Lutheran when he married a Lutheran. His wife is dying from a brain tumor. Bad, yes, but it'll be over soon. Relatively soon.

My sister? Oh man, she's doing great! Healthy as an ox - great marriage; two glorious young sons - both righteously successful. College bound. Fantastic people. Rich? Yessir. House in the Austin hill country with nothing but more success on the horizon. Ridiculously perfect life.

Oh, by the way, she's very actively involved in one of those charismatic churches. Yup. One of those "God loves you and you can have everything" cults. Lakewood writ small.

So here's how it pans out, the way I see it now (sure, I'm seeing it through a bottle and a half of cheap red, but it is before my eyes). If you were Catholic but loose all religion (like me!) you are absolutely and unequivocally fucked. Hey, this isn't just me looking at my belly-button with a tear in my eye. Huntington's Disease is acknowledged as the "cruelest" disease known to man. And that's what I earned for turning my back on the church. A lifetime of suffering that is, without hyperbole, just one step north of hell.

My brother actively tossed a middle finger to the church. He became Lutheran! Holy shit! Hammering toilet paper on the cathedral door - the whole nine yards. For this he will loose his wife during the prime of their lives. Bullshit. God? Bullshit.

Now my sister. A charismatic church? That kumbayah hold hands and drop 10% in the collection plate scam? And for this she is rewarded with wealth and health and blessings beyond most people's dreams?

Hey God? Good one.  

2016.01.16

Hey now, I'm still here.

Two weeks into the new year and I'm still hanging around.

Turns out all I needed to do was start drinking the hard stuff again. Wine? Wasn't cutting it. I now use wine as a stop-gap until I can get real drink. That seems to be helping. Pour enough of the red on my heart and it keeps Ginger Baker away until I can wrap my lips around the real stuff.

Also, I've decided on vodka. Exclusively. Used to be I'd ping pong around gin, V. and whiskey, but I wised up and settled on just the one. The flying V. Gin caused too much sickness, whiskey only seemed to exacerbate my health problems, but good king V.? That's the stuff there. Sure, it causes wicked nightmares, but at least they're interesting. Plus, when I wake up in a sweat from some seriously FUCKED UP dream, and my heart is playing 1812 overture against my chest, I can pretend it is only anxiety. Nothing more.

Yeah, I'm good.

What about MW? How's that going?

Ehhhhhhhh. Okay, I guess. She's about to either quit or get fired from her job because she's been making a lot of mistakes lately. That'll be... bad.

Also, the house has become an absolute wreck. She refuses to clean; nor will she let me clean. Well, why don't I just "sneak clean"? Do some scrubbing while she's asleep or otherwise unaware? What the fuck? Am I so goddamned lazy I'm using my wife's Huntington's Disease as an excuse to live like a pig?

Ah-ha. See there? You don't know what it's like. You have no clue.

I tried. Of course I tried. But when MW noticed a clean floor when she'd left a dirty floor, an explanation was demanded. Um.... Wind? A freak wind blew through the house? Cleaned... the floor?

I'm pretty good at floating bullshit past my MW, but that's a non-starter. No. She caught me in the act and there was hell to pay. So I can't clean; she won't clean, and the house is falling apart.

A better example? The toilette bowls. I just had to take a day off work and spend $600 to replace two functional but dirty toilette bowls. MW wouldn’t clean them; wouldn’t let me clean them, but couldn’t live with them anymore. So she hired a plumber. But she was too embarrassed to be in the house when they came to replace the dirty utilities, so I had to stay home from work. Of course, she didn’t trust either me or the plumber to make sure the work was done correctly, so she was home too; hiding in the sitting room behind a curtain of tacked up blankets. She poked her head around the curtain a few times to give instructions; mostly about where the plumber should be allowed to walk – confusing the hell out of the poor guy – but the job eventually got done. The only positive about this situation is, because the toilets are new, I can probably get away with cleaning them on the down low every week or so without MW noticing.

Anyway, the upshot of all this? MW is looking to buy a new house. Makes sense. This house is dirty; we need to buy a new one.

Fuck yes. Why not? I'm all on board. Talking to real estate agents; driving around looking for good neighborhoods.... Sure, it'll deplete all our savings and put us back in an economic hole, but so what? We’re not going to live forever – why not act stupid now? It might be the last time we have to make such a serious mistake. After this, all our mistakes will be made for us.

The only good break in this situation is that, because I haven’t had a credit card in ten years, I’ve no credit and can’t get a load. Ha! I had to apply for a credit card and, am told by the bank, must make three month’s payments before I can try again to get a loan. So. That gives me three more months of drinking and grinning before I have to sign papers that’ll wipe out any hope I’ve ever had of financial security.

More than that – one of MW’s new home demands is that it be a one-story house. Somehow, someway, she understands that navigating a flight of stairs is now or will soon become… troublesome.

Who knows? Dwight Yoakum told me this drinkin’ will kill me…. Maybe I’ll get lucky before April.

Does this require more of an explanation? Those unfamiliar with the disease may think so. If all you know about Huntington ’s disease is from TV, then probably. On TV it is like a silver bullet of sickness. Terrible stuff, but –in one way or the other - resolved in 45 minutes (thank God). Maybe a season or two (I’m looking at you, House), but otherwise…. Bullshit. No, HD is a lifetime of suffering. And, depending upon circumstances, more than one lives are dragged down into the marsh of dementia. I drink a lot to prevent these thoughts, but oh thank God we never had children. It is just me, I alone, dealing with this. I’ve even isolated MW from her terrible, terrible family so they don’t have to acknowledge the fact that the next time they’ll see their beloved daughter/sister/cousin will be at her goddamned funeral. I’ve jumped on that grenade. And I’m going to lay here, fifteen, twenty more years before it blows. I and I alone.

So when I bitch about the house being in disorder or how MW is losing her job and those uninitiated wonder why I can’t be more proactive or helpful, my only response is death. Death is the ultimate answer for my ineptitude and folly. If I were to sit MW down, tell her that she’s sick, that she has a terminal disease that, yes, can be “managed” through medication and therapy, but not cured, then where have I put her? I’ve put her right in the fucking grave. I’ve shoveled six feet of dirt on MW’s lovely face and garnished it with a rose of prescription medication.

Remember – we both watched her mother suffer for 15 goddamned, terrible, insufferable, dehumanizing, fantastic, Godless, abhorrent years of the disease. “Hey honey, you have Huntington’s disease! But good news – I’ve just bought a lifetime supply of Depends and Ensure, so… Yummy!”

Making the decision to not tell her? Well, that’s an invitation for chaos to reign over our house. But what the fuck? The house is only myself and the stupid dog. We’ll live or we won’t, who cares?