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?)
Thursday, May 18, 2017
Monday, May 8, 2017
2017.05.08
The conversation about "why does my arm/leg/head move like that?" has progressed from a once-in-a-while occurrence to a daily event.
I still answer it is normal behavior, everybody experiences it, happens to me all the time. We're growing older. And so far that's worked.
So far.
I'm going on my fourth year of this... madness. Four years of lying to MW while taking ridiculous, almost comical steps to ensure she doesn't discover the truth of her condition.
Four years ago I was certain the end was in sight. I knew it couldn't last. 1,400+ days later and here we are: Still dancing on the edge of the cliff.
But now....
MW can't sleep for the twitching. She wakes up every morning asking me why her body moves like that. I lie.
She spills food and drops things so frequently these days; it isn't even remarked upon anymore. I hear the crash and shout out "Got it!" before she calls for help. I've done a remarkable job keeping her away from family and friends, but the few she does speak to, I know, are confused by her behavior. I feel physically ill when I hear the phone ring because I'm worried about what will be said.
And she's maybe a week away from losing her job. They say it is a schedule change, but there is no way she can work full time and I think they know that. They're trying to get rid of MW without actually firing her. I can't blame them; but not having a place to go, even for just a few hours, will be very difficult for MW.
More time to sit around and feel her body twitch.
***
The warrior heart that beats for the struggle; lives for the fight. Will never surrender or submit. Finds strength in adversity; comfort in God.
That's not MW. She would rather die than even admit she has a problem.
Which leads to the question: where does this end? What will I be asked to do; what am I prepared to do?
***
Hopelessness. I've a newfound appreciation for the word and I think it may be overused. "This is hopeless", usually means the outcome will be less than ideal.
And that is not hopelessness.
I read the HD social media posts. Misery; company, etc. Recently someone posted an angry rant about the disease, one of the lines read "only God has the cure!" Naturally the comments were voluminous and almost uniformly offered "prayers".
Nope. Maybe, but nope. "Only God has the cure!" means the only cure is God taking you away. Translation: death. There's your cure. The only cure.
Now we're edging closer to the true meaning of hopelessness. Not that the outcome will be less than ideal, but there is no outcome at all. Just an end. The ultimate end. That's where this is going. And the journey towards that end is long and painful and intractable.
I spend every waking hour of every day feeding and cleaning up after MW, listening to her irrational and often hateful speech, and, most important, lying to her face; her once stunningly beautiful face that has started to contort and reform into the HD rictus. My reward for this will be to do the same tomorrow, but a little worse. Then a little worse the next day. Again and again.
Until one of us dies.
Hopelessness.
Four years ago I was certain the end was in sight. I knew it couldn't last. 1,400+ days later and here we are: Still dancing on the edge of the cliff.
But now....
MW can't sleep for the twitching. She wakes up every morning asking me why her body moves like that. I lie.
She spills food and drops things so frequently these days; it isn't even remarked upon anymore. I hear the crash and shout out "Got it!" before she calls for help. I've done a remarkable job keeping her away from family and friends, but the few she does speak to, I know, are confused by her behavior. I feel physically ill when I hear the phone ring because I'm worried about what will be said.
And she's maybe a week away from losing her job. They say it is a schedule change, but there is no way she can work full time and I think they know that. They're trying to get rid of MW without actually firing her. I can't blame them; but not having a place to go, even for just a few hours, will be very difficult for MW.
More time to sit around and feel her body twitch.
***
The warrior heart that beats for the struggle; lives for the fight. Will never surrender or submit. Finds strength in adversity; comfort in God.
That's not MW. She would rather die than even admit she has a problem.
Which leads to the question: where does this end? What will I be asked to do; what am I prepared to do?
***
Hopelessness. I've a newfound appreciation for the word and I think it may be overused. "This is hopeless", usually means the outcome will be less than ideal.
And that is not hopelessness.
I read the HD social media posts. Misery; company, etc. Recently someone posted an angry rant about the disease, one of the lines read "only God has the cure!" Naturally the comments were voluminous and almost uniformly offered "prayers".
Nope. Maybe, but nope. "Only God has the cure!" means the only cure is God taking you away. Translation: death. There's your cure. The only cure.
Now we're edging closer to the true meaning of hopelessness. Not that the outcome will be less than ideal, but there is no outcome at all. Just an end. The ultimate end. That's where this is going. And the journey towards that end is long and painful and intractable.
I spend every waking hour of every day feeding and cleaning up after MW, listening to her irrational and often hateful speech, and, most important, lying to her face; her once stunningly beautiful face that has started to contort and reform into the HD rictus. My reward for this will be to do the same tomorrow, but a little worse. Then a little worse the next day. Again and again.
Until one of us dies.
Hopelessness.
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