ALS: THE DUPLICITY OF DYING … SLOWLY

At almost 35 years old, I remember thinking “never thought I’d live this long!” Maybe that was ‘cause I’d once again, just lived through something I shouldn’t have — my May 10th, 1974 hang-gliding crash where I’d flatlined … … for a bit.

Thanks to Kaiser-Permanente’s malpractice, I’d be “under-the-knife” again … in 5 corrective operations over the next few years – more pain, etc. but at least I’d walk again – not at all what Kaiser-P … had planned! Their plan was to amputate both legs, so they told me.

Now, 43 years later, I’m terminal but most people with ALS like I have, live 2 to 5 years max, once diagnosed, and here I’ve beaten the odds once again; I was diagnosed 4 years ago and am expected to live (barring how and when the Rapture comes – soon, I believe — based on the Revelation 12 sign, in the heavens this month – we’ve  several more years at most!  Data shows this sign’s never occurred before.

That’s because my particular ALS’s variation’s life expectancy is 5 – 10 years, so … … 4 down … n’ 1 to 6 to go! Either way, it seems like a morbid future, right? That’s especially true, knowing that ALS patients spend their last days … … kinda trapped, mostly struggling, even to communicate. Then there’s the fact that we loose all abilities to move our muscles, even to turn over in bed; one must totally depend upon another for everything from urinating to eating.

That all-too-often realization of what is coming, reminds me of talking with my mother during her last days; at 88, she was asking me why I thought God had not “taken her home” already. I explained to her (as if I knew God’s reasoning) that it was to allow me to help take care of her – that it was an object lesson — that it was for me! Wanting to go home, she clearly saw her life as pretty worthless. When I answered her that it was for me, that evoked a follow-up question from her. “You take such good care of me, I don’t mean to offend you, but do you mind telling me … (she hesitated) who you are?”

The realization of that … that she didn’t know me … nor why I was there, caring for her … getting her up and into her chair and fed, etc. throughout that time … … it brought to me a new level of emotional pain. I find I think of that, often now … probably comparing her plight then, to mine, now … …

Analyzing things, the way I do, I grieve for my beloved … knowing she’ll grieve … … …  we’re seen as newlyweds.  We’d married a few months after being diagnosed; she made her decision Fully aware, saying “too late; I already love you” and studied ALS; typically,, i stuck my head in the sand.

It is, at times, way too much for me to carry, I love her so deeply. Though my demeanor rarely comes across as I’d like it to, when I’m grumpy, she’ll sometimes tell me I need to take a pain-killer (my arthritic pain) … we end up laughing a lot! I’d wanted to be remembered differently – making people laugh and smile – overall, meaning being a good witness. Being a good witness, meaning joyful … even jovial, it doesn’t seem to be in me … not like I feel it should! I know where I’m going, after all and that should show forth in my countenance, I find myself silently criticizing myself, as usual.

Guess what I’m trying to explain is that I grieve way too much to show how happy I am inside … it either doesn’t ‘fit’ or I just don’t seem “to get it!”  I grieve over the pain I see in others. I grieve for the pre-born babies aborted and for the emotional pain the mothers will feel when they realize what they’ve done, I grieve for parents who’ve had to lock their beloved children out of the house because they’ve become druggies and all that entails (I spent 32 years as a professional locksmith.). The grieving for others, just doesn’t seem to quit … yet, somehow … inside, I’m desperately happy – it’s just that I cannot seem to show it – at least not without crying (I all-too-often find myself explaining the tears as “full cups overrun easily!”)

All this began back when I fervently prayed: “Jesus; please make more like you!” I’ve heard it said (more than once) that “one should be careful, what one prays for …) guess it’s true! I sure wouldn’t have even thought to have chosen feeling other’s pain so deeply! It is part of what my beloved’s found to love in me, so there is at least one upside to it. There’s another, evidently; feeling other’s pain, leads me to pray, and that’s always a good thing …. So, I guess, I’m just whining here … …

God always knows what He’s doing! We have such a loving, merciful and gracious God and I’m so Blessed to know and love Him so!  — “Grateful, I am” in Yoda speak.

 

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About josiahe

Watching closely, working to understand all I may, in this "Age of Information", even from my limited view, I can see much of what's going on ..... and I oft see it's going to impact all of us which is why I share it. My focus is to expose evil, and to serve my Lord and savior Jesus in whatever way He shows me. If one waits long enough, better writers will come along and comment; it's just that I have so little patience with the evil that lurks among us and I've wasted so much time and now, there is so little left! WELCOME!
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