2014.12.04

You play to the level of your competition; up or down. In this case, the opposing team is MW's nascent Huntington's Disease behavior. So my game is pretty much just functioning right now - hiding at work, cooking and cleaning around the house, and hopefully getting a little sleep at night - and if I can do that much without breaking a plate or spilling my drink, then hell. I win. No use trying to improve things or in making any plans - that would be setting myself up for defeat. Just get through each day with some semblance of normalcy in my actions. That's all I need to do.

For the record, here's the recent playlist of my opponents offensive:

MW called me at work today worried that she's been burping too much. She asked if burping a lot was normal and  I assured her that I have also burped too much on many occasions. This calmed her down, but Jesus Christ.

Holidays are hard, but this year Thanksgiving was exceedingly cruel. Partly because the day of was so good: we went to my brother's house, saw all the family, left before diner, and at no time did anybody inadvertently say or do something to upset MW - a very rare blessing indeed because just about anything can set her off. The next day, however, MW reached back into the past to find old injuries to drag forth and mull over. This managed to kill the rest of the vacation with bitterness and tears.

On the chorea side, her exaggerated movements are making it difficult to have her in the kitchen now and she'll spill her drink or drop her food more often than not on a daily basis.

And, of course, sleeping is still my opponent's number one weapon of choice. Every night MW asks "Do you think I'll sleep?". I always answer, "Of course you will." But it doesn't always work out that way. Most nights she'll wake up at least once, usually around midnight, to ask how long she's slept and then makes me run some errands (fetch water, adjust thermostat, etc.). She may sleep after this, then again, she may not. Those are the bad nights.

Also, she's started setting the AC down to 60 degrees at night. Freezing! The reason for this is because it is winter, but MW still wants to feel a cool breeze in the house. So she has to set the AC low enough to run all night, no matter how cold it is already.  

Finally, her hand. Every night she asks me to hold her hand as she falls asleep. And oh how the blessed thing twitches and jerks and spasms. Its like she's playing an imaginary piano - a song with absolutely no rhyme or reason.

There I am. In the dark, holding MW's hand. Feeling the disease. I may have won the day, but it will take the night because it never gets tired and it doesn't need rest. And time is on it's side.

2014.11.26

MW works part-time weekend hours and getting her prepared is always hectic. I wake up early and spend an hour or so in the kitchen cooking and packaging her food, but she usually doesn't start getting ready until about ten minutes before she has to leave and then it becomes a mad rush of can'tfindits and whereisits? Last Saturday, well past the time MW should have already left for work, I called out after her as she went into the garage, "Wait! You're not wearing pants!"

She came back in laughing. "Did you really think," she asked, "that I was going to leave without putting on pants?"

Well. Yes.

And that pretty much sums out how things have been going recently: I'm super-alert and guarded against coming disasters while MW continues to function fairly normally.

Certainly her regimented diet and hyper-sensitivity towards sleep are a hindrance - for example, tomorrow - Thanksgiving day - we won't be able to eat with our family or friends because she's worried that taking different food will keep her awake, and she has to be home exactly on time for both lunch and diner so we can't make plans with people which might interfere with that schedule.

But it has been over a year now since I started this journal and MW is still able to hide from HD and live a modestly productive life.

Still, the holidays are hard. I'm always scared someone will say or do something to upset MW - maybe even say something about her behavior or clumsiness - and that'll topple this house of cards right over.

Tomorrow is the first test. Then Christmas. And if we make it through that, who knows? Maybe we can keep chucking peanuts at the elephant in the room for another year.