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.