I write this from a sort of suspended animation, as we await results from some of the many diagnostic tests Alex has been put through in the last few days. It's an odd sort of anticipation. We're afraid they'll find something, and more afraid that they won't.
I haven't shared, very publicly, what's been going on with Alex, but I think the time has come that explanations will be required most everywhere, and also, there's the chance that, of you people out there reading this, someone might have gone through something similar. There may be insights to share, and God knows we could use some, because we, and our doctors, are so far stumped.
Something bad is happening--seems to be happening with his brain--and that's about all we know for sure. It does not appear to be related to his bipolar disorder, nor do that disease's attendant medications seem to be implicated. The only way I can describe it to anyone who hasn't experienced it firsthand is that he seems to be... degenerating, somehow. I seem to be losing a little bit more of him every day. I can only tell you what it looks like.
His short-term memory is severely compromised. He can't recall things that happened yesterday, or even earlier in the same day, sometimes. His ability to reference any sort of timeline is for the most part gone. Things that happened last year, he recalls as having taken place "a couple of weeks ago," and likewise, something that happened a couple of weeks ago could, to him, seem to be six months in the past.
He is confused a lot of the time, and understandably, is quickly frustrated by even the mundane. He seems to have particular trouble with communication--with getting the thoughts in his head into words and phrases. There is still a quick, brilliant person trapped inside there, and he can't explain what he's thinking...and occasionally doesn't realize right away that he's not making sense.
My athletic, strong, quick-reflexed husband, he of the near-supernatural hand/eye coordination, has become slow, weak, and clumsy. He's lost so much weight that he's now well under his high school weight--11 pounds in the last week. His gait is a slow, shuffling/shambling sort of walk, with arms outspread on either side, as if walking a tightrope. Frequently, one hand or the other will pinwheel briefly in the air, looking for balance. Sometimes I need to help him walk from one room to another, and getting in and out of the truck is a challenge. Needless to say, he can't drive a car.
His speech is slurred, and often confused. I've seen other people--shopkeepers, parents at Bella's softball games--dart glances at me as if to check and see if I realize that there's something wrong here. I have no doubt that sometimes, strangers assume that he's been drinking. If you didn't know him, and you observed him in conversation, you would most likely think him intoxicated.
If you didn't know him, and you observed him walking, his gait slow, with painfully short, shuffling strides, arms out stiffly at his sides, slightly bent over, you would most likely think him very old.
Our neurologist has ruled out a couple of the scariest possibilities, like early-onset Alzheimer's (too young) and Huntington's Disease (no involuntary movements), but beyond that, she's kind of baffled. We've gone in for an EEG, extensive bloodwork, 24-hour urinalysis for heavy metals and other things, and today, an MRI of his brain.
And so, now, we wait. And for Alex, the waiting is torture, as is being prisoner to a traitor body and brain. I try to anticipate his needs, to understand what he wants to say so he doesn't have to go through the agony of trying to get it out, to remember to take care of things he would normally take care of himself. I try to be patient, and I am not always successful, to my lasting shame. Often, feeling overwhelmed with all that must be attended to around here, I find myself "stuck" behind him in a narrow space in the house, trying to get by him as he makes his painfully slow way around, and I have heard myself snapping, "MOVE." And then I see his shoulders sink, and my heart follows. I apologize a lot. He apologizes more, and his apologies are for things that in no way require apologies, which breaks my heart more. "I'm sorry I'm like this." "I'm sorry you're stuck with me."
Worst of all are the times when he just looks at me with all the sadness in the world in his eyes, and says, weakly, "I don't want this."
So, I love him. I give him everything of myself that I can, and I help Bella to be understanding and kind. I do what I can. I cook. I grow things. I pay bills. I plan for a future in which I'm the sole income-generator in this household, and I look for ways to supplement that income if I can. I don't think about how I will take care of him and earn a living, should he not recover from this state. I refinance the house, and trim the budget. I am rarely doing all the right things, and am never perfect, even for a minute. Often, I'm not even close.
I pray. And I hold him at night, which is when he seems the most lost and scared.
..."and I scream, 'If you want him, you're going to have to fight ME.' "