Thursday, December 18, 2014

Lasts

It an unwieldy question, but it gets applied to all manner of things..."what would you do if it were the last time you could do X?" or "how would you feel about it?"

I recently witnessed the later of those questions dawn on a small group of guys that had played their last truly competitive game of football. Even though the level of football was nothing close to the kind of football that pays outrageous salaries to babied grown men, it was as competitive as can be.

There seemed to be many unspoken emotions; sorrow, regret, happiness, bewilderment, and frustration to name a few.

I recall similar feelings when I finished playing competitive footy. I think I was relieved, too.

Of course, ALS gives rise to those same unwieldy questions on a frequent basis.

I remember losing the strength in my arms to button my shirt, or roll my collar down over my tie. I recall losing the strength to properly bathe myself. Losing the strength to exit the bath was demoralizing...a bit like a beetle stuck on its back. I remember how my ability to type decreased in speed and accuracy at work.

These aren't the lasts that I think matter, though. Sadly, I'm quite vague on some of my more important lasts.

I cant accurately remember when i lost the strength to pick up one of my girls and give them a hug. Or tickle them. Or clasp their hand in mine. Or pick them up when they falter.

I do remember when I last told them that I love them...every night, every time they leave the house, and a litany of times in between. But I can't form the words any more. I have to hope the series of noises I make are comprehended as, "I love you."

That's my reality today. We all know that my future has many more lasts in store for me.

A friend of mine recently went through the last: The last breath.

As my doctors have told me, later stage difficulty in breathing can't really be treated. All that's left is medication to make the patient as comfortable as possible.

Between now and then, I'm sure I'll lose the ability to eat food without significant risk of choking, so I'll receive my nutrition through my feeding tube. My fluids, too. I'll lose the ability to stand, even with assistance. Here's a real kicker; I'm in the middle of losing control of the muscles that make my lips form a pout to kiss.

I don't fear my last breath. But I do find the timing to be one of the most unfair aspects of my illness. That consumes my thoughts more than fear.

The thought that consumes me the most hasn't changed, and will likely be going through my mind when they fill me with morphine. It's basic and I feel it on a most quite primitive level; how do I take care of my girls?

I can't rid myself of that thought, and I don't think it's right to push that thought aside.

In my mind, to push that thought aside would be the moment I stopped caring, the moment I stopped loving. And while I may be in the midst of losing the ability to vocalize my love, I refuse to let the emotion leave my body.



Monday, December 15, 2014

Sunday, December 14, 2014

Twisted

I recollect a lot of the details from my initial diagnosis fairly well, but there are some gaps. I attribute the gaps in my memory to the moment immediately after my neurologist had just given Amanda and I another brutal detail about what we should expect.

I remember my mind going elsewhere right after we were told about my life expectancy. Unsurprisingly, my senses almost shut down as my mind went elsewhere. And it's not like I was plunging the depths of my mind to find the answer to a question on theoretical astrophysics. Simple arithmetic to figure out when I should expect to die was consuming all of my focus.

I would drift back in to the conversation, back in to my surroundings.

I remember leaving the medical office holding hands with Amanda, and making it back to our car before losing my composure altogether.

My initial thought wasnt about my death - well, thats not the thought I got stuck on.

That was September of 2011. I was still active. Still playing footy. Still doing projects around the house. Still playing with Cora and Louise. Still wining and dining Amanda.

A lot of water has passed under the proverbial bridge between now and then.

My initial thought was of the burden my illness would undoubtedly place on Amanda. And Cora and  Louise.

Amanda was almost incredulous that my thought wasn't something closer to self pity.

I wonder now, particularly after the past year, if my initial thought makes more sense to Amanda. The past year has reaffirmed it for me.

As I've gone from able bodied to near paralysis, you can't even fathom the responsibilities and roles Amanda has had to assume. You may think you can guess what it's like for Amanda, but, in the realm of guesses, you wouldn't be in the right galaxy.

So here's to my wife; the most loving, hardest working, most giving, and toughest person I know.

Happy Birthday, babe.