I Get Angry Sometimes, Even In Cuba

It's hard to believe that a month of the year has passed already. It's a difficult time for me, the way I am feeling these days. It feels like this will be the last good year of my life, if not the last year completely. I hate to see it pass so quickly, to lose these days in the sunshine, these hours of freedome. I hate the feeling that all of this is coming to an end, that I won't get to see what happens next.

There are a couple of reasons this is hitting me hard today. First and foremost, I've come down with a cold. I've got the full meal deal; runny nose, watery eyes, headache. It's hard for me to tell if the soreness in my muscles is a part of this cold, or a part of ALS. I'm tired and I feel weak, and I'm tired and I feel weak. I guess the reasons don't really matter.

The other reason has to do with the anger that is building within me. I'm angry at what this disease has done to me, angry that it has taken away so much. I can no longer walk on the beach and feel the sand slide between my toes. I can no longer swim in the sea and feel the waves lift me up and down. I can no longer sail on the open sea, feeling the tug of a sheet in my hand as I bind the wind to my bidding. I can't play golf. I can't ride a bike. I can't even go for a God damned walk.

Yesterday I wanted to go sit on the beach. The boardwalk to the beach ends as the sand begins, but the beach area and, more importantly, the beach bar, are further down the strand of sand. It means I cannot get there without help. Fortunately the sturdy young men who are lifeguards here have come to my aide and figured out how to carry me down to the beach area without too much damage to themselves or me. They've even figured out how to get me in and out of a beach chair. For this, I am grateful. With this, I am frustrated and angry.

Once I was on the beach, well settled with a Pina Colada and my book, I took a look around me. I saw this vastly overweight woman trudging by, smoking a cigarette, carrying a beer. Why does she get to abuse a perfectly good body while I lose mine? I looked after myself, mostly. She is a walking advertisement for heart attack, stroke, diabetes, and any other ailment you could ascribe to over indulgence and lack of concern for her own well being.

I saw two men walking further down the beach, one a young man, slightly chubby, also smoking away as he walked. Behind him came a man about my age, a little bit of a middle age paunch, yet strong, striding steadily, walking confidently on the sand. I know which one I would be, which one was me. I started to get angry. The randomness of this disease is maddening, it's outcomes miserable.

I'm sitting here in the lobby area, Katherine beside me. She is so patient with all of this, with my distress, with my upset, with my illness. She deserves better. I can't give it to her today. That makes me angry too.