2017.05.18

Social media buzz today is all about the Pope meeting with HD families. He told us that we are “not alone”.

Wrong. But thanks for trying, buddy.

***

The problem with social media is watching the videos. Seeing how everybody with the disease starts to act, sound, even look, the same. The same gait; the same arm movements. The same slurred, drunken speech. And worse, their faces. They all get that lopsided, twitching appearance. Wait for it and you’ll see the Sardonicus grin. Rictus, really. After that comes the deep frown: the furrowed brow over sunken eyes; revealing a terrible mixture of confusion and fear.

One roll; 30,000 actors. Each slightly different, but all of them commanded to act out the same characterizations. The part they’re playing? Slow death.

***

But I admit, watching the Pope interact with HD victims had an effect. It made me sad, but in a good way. No, trust me; I’m an expert on sadness and it is possible to be good-sad.

I was raised Catholic. He is the Pope. How can I not react to him acknowledging our struggle? Oh, I know it is meaningless and won’t change a thing. My options are still intolerable. Nevertheless… he is the Pope. And he went out and hugged people like MW.

Thanks, buddy.

***

Today, for the first time, I got proof that my sympathetic HD actions are working. MW called me at work to worry over a possible symptom she’d experienced last night. She explained it as having “heard a noise” while on the computer.

At first I didn’t understand; but that’s not uncommon. So I asked if the computer’s speakers were turned on?

She went on to explain that the noise came from her arm twitching uncontrollably.

Ah.

But then, as I was running through all the reasons why sudden, unexplained movements are definitely not symptoms of Huntington’s disease, she preempted me by stating; “I’ve seen your arms like that sometimes.”

Indeed she has. And not by accident. I will make random, twitching motions when I’m around her just to plant those seeds. Lo and behold – fruit!

So that strategy paid off. Good. Any little victory…. The downside, however (everything comes with a downside these days) is the anxiety and roiling guts I experience when I call the house and she doesn’t answer (accident? fire?) or if I hear sirens when she’s out alone (crash?)