I would constantly remind myself that I could not imagine for a moment not being able to move even an inch. How many times, when sitting or laying down, do we subconsciously just reposition an arm or leg the tiniest bit?
As a CALS, getting Chris 'just right' was what you all describe. I would work for 15 -20 minutes to get him 'just right', put equipment away, tv on, and look at him and ask "all good"? He would shake his head. I would have to start the guessing game (he couldn't speak) - feet? legs? hands? arms? shoulders? neck? ummmm what else is there - oh pillows? ok which one ... left leg? right .... you know the drill.
And as I would leave the room exhausted, probably about 40 minutes later now, I would think, what must it be like for him?
Hell I'm sure.
My back would be aching, my heart would be torn up, and the exhaustion would nearly drive me to tears.
But it's the loss of the relationship isn't it?
You do those 100 minor adjustments, they frown, grunt, roll the eyes, you guess what each means and try again. Then, for me, Chris would just kind of nod and turn his eyes away from me. That was the signal, yeah you finally got it right, go away now. I would put my face in front of him, look him in the eyes and kiss him. Mostly he would just freeze and be a stone. But I would walk away then and kind of shrug my body from top down to the toes to release a bit of tension and wonder how was I going to get up and do it all again tomorrow. Then forbid myself to think this, just go have a shower girl, tomorrow isn't here yet ...
I say all this at the risk of other PALS reading it and taking what we say the wrong way. We all love our PALS deeply, but we must let off some steam.
If I had my time over - would I do it all again for Chris anyway? You bet I would.
Did I feel at the time like I was not going to survive it? You bet I did!