Fear

I have noticed another change, only this time it’s not physical. I am becoming more cautious, more risk averse, more fearful. It’s not that I am a particularly brave man, but I have never thought of myself as fearful.  Discretion has often been the better part of my valour. Yet I ran away today, of all things, from a rain squall. Well, I wheeled away.

I struggle with the fact that I responded to the squall in this way. Those of you who know me well know that a little thing like a storm doesn’t usually cause me to flee. Certainly I would be frightened if I was out in my boat; that’s just normal and reasonable. But I have never run from danger before. I have often walked from it, avoided it, stayed away from it; not often have I run, rarely, perhaps never. And a little rain squall? I like weather.

It was an awful moment for me, realizing that I had become that frightened man in the wheelchair, desperately fleeing indoors because a squall was coming through. The man I was would simply have let the rain fall, let the wind blow, and thrilled in the energy of the storm. The me of days gone would have let the raindrops splash off my cheeks, let the wind buffet me, let the clouds drive on through, daring the storm to leave a mark on me. I used to love this kind of weather.

I saw the black clouds gathering over the sea, rolling towards the beach, the squall driving the ocean surge ahead of it, the waves smashing the beach and foaming at the shoreline. This was a classic ocean squall, all bluster and boom, soon to pass. Rather than simply wait it out I made the wheelchair equivalent of a mad dash from the beach bar where I was reading, up to the main hotel, hiding indoors as if the rain might damage me.

I have begun to notice this more and more, that I am challenged by the risks of living, the dangers that come with daily activity. I worry about whether or not I can open a door, or if a location has stairs, or where the impediments will be. I have gone from carefree to careful, from risk managing to risk avoiding. I have gone from brave to cautious. I have gone from strong to weak, from fearless to frightened.

The dash exhausted me; I rolled into the cafe and had a coffee, reading and awaiting the slow muscular recovery that I now need with virtually any exertion. Then I waited for the rain to fall, wondering why I ran, or rather wheeled, away. As I sat there the clouds passed, the sky cleared. It didn't rain.

Now I wonder, am I going from living with ALS to dying from it?