Swimming In It

Writing a blog post at the end of a six hour drive takes a lot more discipline than it does at the start of the day. My energy has been well used through the day, what with driving, stopping for breaks, going fishing for an hour along the way. It's not that it was a bad day, in fact it was a good one. It's just that I am sore, stiff, and tired by this time.

This morning was a rough start. I had come to the conclusion that I was not going to be able to write in the morning thanks to the flakey Internet connection at the motel in Watson Lake. It's something you have to deal with up north, the fact that things like Internet and cell services are irregular at best. And perhaps someone can explain to me how my Wind cell phone registers on something called "Digicel". a Jamaican carrier, then gives me a message welcoming me to Jamaica!

Once I decided to give up on writing, I turned to get dressed. I flung one dead leg up across the other, took a good look at my brutally purple feet, then struggled to get my compression sock on. It was then that it happened, something that happens on a periodic basis as I deal with the absurdity which is my life these days. A wave of distress washed over me, like one of those rogue waves at Peggy's Cove which grabs the unsuspecting tourist and drags him into the Atlantic Ocean. Only my ocean is one of despair, and to be frank, self-pity. Yes, I admit it.

The overwhelming questions that run through my mind at these moments is "What the fuck happened? How the fuck did I get here? What the hell did I do wrong?" Of course it's all rather irrelevant. I am here because I am here. ALS is what happened. I did nothing wrong, nothing to earn what has become an almost bizarre caricature of a life. It just is, that's all.

When I get like this, the ocean is not the Atlantic, but despair and sadness. I struggle to keep my head above water. Katherine came over to hug me and tell me I was okay. I clung to her like she was a life preserver against this brutal sea. Those who have seen me go through these moments know how much I need to cling to something, or someone when this hits.

I work very hard at keeping my head above water, at ignoring the signs, pretending my life is "normal". I work very hard at keeping up the level of denial I need to stay afloat. Without that, I would descend quickly, drowning in this ice cold ocean of despair. Sometimes it's just too much to keep up the work. Sometimes I slip off the rocks. Then I have to take the time to recover, like I did this morning, and just keep going. The problem is that it's getting harder and harder to keep my head above water.