LIVING WITH ALS

It’s stressful to see what’s ahead for me. ALS can be … … … rather, it usually is … a nightmare.

My anxiety really began to grow when I understood more of what’s ahead for me. Mostly, I buried my head in the sand. I’m blessed that my wife has made me face it but only the next single step through this journey, so I kept stumbling forward, one step at a time.

Then . . .it got worse … it began to overwhelm me. What bothered me most was knowing that I would not be able to communicate with those I love, some day. My new son-in-iaw made us aware of a ‘coping program’ called “voice-banking” which he thought would help; it’s available for my iPad and it seemed to offer hope.

Seemed!

I downloaded an app called “voice record”, agreeing it would help. The plan was to record important phrases to help me communicate … in a way. In retrospect though, the more I tried to record phrases I wanted to be able to tell my wife and even requests for help which I knew would help her … the more my anxiety level grew, but it increased … exponentially! My “I love you, so much” sounded extremely trivial compared to how deeply I felt and still feel! That, killed my enthusiasm.

When I go through problematic circumstances I tend to internalize them, pretty much. It’s the way I was made. I get quiet and try to work through things myself before I talk to anyone about it. Being a newlywed, that’s not always the best solution. It took me a while to even verbalize what I was struggling with.

Normally, my belief in God pulls me through; it has … so far. This, however … bad as prior episodes of my life had been … … …. I’ve never felt so helpless … so alone. I descended even deeper into despair. It was isolation I feared.

I went through most all the stages of grief —
“The five stages of grief, postulates a series of emotions experienced by terminally ill patients prior to death, wherein the five stages are denial, anger, bargaining, depression and finally, acceptance.”

My own death was easy to accept; eventually, we all die. I skipped bargaining. Denial didn’t last long. Anger did. Or rather, it kept reappearing; I blamed God, when it reappeared …

I’m at a point now, where I cry so easily, so quickly … any emotion sets it off … I really don’t fully understand why. Yet, I do, in a way. I’m so blessed that I explain to those who see it … that “I recognize how blessed I am! When one’s cup is so filled (with blessings), one’s cup over runs easily!” Admitting that, increases the tear-flow and I often find myself praying they understand – that I’m sincere as well as honest about it.

Some, however, probably think I’m weak. That’s true. I am. It’s God who is strong – it’s He, who is pulling me through – giving me strength! Scripture tells us that. God, our provider, Jehova Jireh provides. He even brought my wife, my angel to me, – – brought her and I together. Words cannot say how much I love them both!’

Now to why I felt I should publish this . . . One Sabbath, a Saturday, around mid-day, I was particularly stressed about not being able to communicate with anyone, and expressing that in prayer, to God, I ‘heard in the spirit’, very clearly: “it’s okay; we’ll talk!” That He would tell me so … … is beyond my wildest expectations! I love Him so!

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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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