Friday, October 24, 2008

Goin' to Carolina . . .

Because I like surprises, I tend to leave my iTunes on shuffle. It's like receiving little presents all day long, because you never know what's going to be served up.

First thing this morning, James Taylor's "Going To Carolina In My Mind" cued up, and I immediately thought of Russell, like I always do when I hear that tune.

Russ really loved going to the mountains, especially the Great Smoky Mtns. Russ loved life. He loved his wife, and his son and his family. He was a happy person, one of those people that just seemed to enjoy his life which, as it turns out, was shorter than anyone would have ever guessed.
Actually, I've been thinking alot about Russ lately. He was on my mind as I stepped through the processes to have my surgery. He was on my mind when I was in the hospital, wondering what the outcome would be, and he was a fairly constant presence when things weren't going well and it seemed a little touch and go.

It's been more than 5 years since he died, and I still marvel at his strength as he faced death. He was the age I am now, with a child the same age as my daughter now, and he faced the end with dignity and calmness and even a sense of humor.

I can remember when he first got sick. We assumed it would pass, like you always do. I remember it took all of us a long time to accept that he really had ALS and he was dying, and each of us did that in our own time.

Dark and silent late last night
I think I might have heard the highway calling
Geese in flight and dogs that bite
Signs that might be omens say I'm going, going
I'm goin' to Carolina in my mind

I watched as his abilities deteriorated, and as he lost the ability to walk or stand or speak or move, he spent more and more time in his bed or motorized chair; it had buttons on the headrest to go forward and turn. He retained the ability to blink his eyes, partially move one foot, and he could still "speak", although it was more like lip-reading. Outside of the limited facial movements, he was completely paralyzed, but was still 100% lucid and aware. That was the most heartbreaking to me.

But damn if he wasn't brave and cheerful. It was an amazing thing to watch him joke with us and see him raise his eyebrows at his wife. His life had flipped on a dime, his future was blown to bits and fragments, his finances were a wreck, and he was dying a slow agonizing death, but he still found pleasure, despite all of that.

Not only was he brave and cheerful, Russ spent his last days helping others. He endured studies, tests, anything that might help doctors. He used a laptop throughout his illness to communicate. Even in the late stages, when he had lost all ability to move anything more than one toe on his left foot, he had a rollerball mouse attached to the footboard of his bed and used the laptop to "chat" with visitors that weren't able to read his lips. He was the most motivated person I knew, and he seemed to have endless hope and enthusiasm.

There ain't no doubt in no one's mind
That love's the finest thing around
Whisper something soft and kind
And hey babe the sky's on fire, I'm dyin'
Ain't I goin' to Carolina in my mind . . .

He had ALS for far, far longer than most patients, which could be considered a blessing or a curse. I remember sitting by his bedside at the hosptital when we were asked to come visit, watching him as he slowly, slowly used the rollerball to type me a message.

this might be it for me

It was just he and I there. Everyone else was outside the hospital room, sobbing, and it was just he and I in that room, chatting about his death.

"Are you ready?" I asked, looking him in the eye. He blinked once - that meant yes. Then he blinked twice - no.


"You want more time." Blink

"Is there anything that you want to do, anyone that you still want to see?" Blink blink

"Just more time, right?" Blink

In the end, he chose the day and the time that his life would end, he allowed his family and friends to gather and say their goodbyes to him as he was heavily sedated to block the pain and his ability to fight against having his ventilator turned off so he could slip away:

With a holy host of others standing around me
Still I'm on the dark side of the moon
And it seems like it goes on like this forever
You must forgive me if I'm
Gone to Carolina in my mind . . . .

I've been thinking alot about what he would do if he could see me today. What he would say to me about having a chance at a new life, at regaining my health, at starting over and doing things differently.

Actually, I already know what he would say. He wouldn't cast blame, and he wouldn't scold for the opportunities lost. He'd celebrate the now, and probably make some plans for a weekend trip to the Smokies.

I want to live well in his memory, and enjoy what I can, in his honor. I'm going to try.

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