The Look

One of the really awful things about ALS is the texture it layers over everything I do. I can be in a beautiful place yet finding myself dealing with the anger of steps in the way or curbs too high. I can be with people I love and who love me yet find myself angry with them for not understanding, for not seeing. I can feel great, feeling the freedom as I drive along in my truck yet at the same time fighting with dead feet in the way and tired arms that won't cooperate.

Last night we arrived here at my brother Adam's place in Lake Charles, Louisiana. Above all else, Adam is a kind and gracious host. He is helpful and considerate to me every time I visit. We arrived late, at about 9:30 PM. While I rested, he, his wife Lisa, and Katherine unloaded the truck, bringing in all the gear needed to accommodate a visit by me. There's a lot more this time than there was a couple of years ago, the last time I was here.

We sat and had a glass of scotch, after which Adam said that he and Lisa were off to bed, asking if I needed anything before he went. I had transferred to the couch, so I asked if he might help me with the transfer back. He tried lifting me but I am just too heavy for that nonsense. Instead, Katherine grabbed the transfer board and slid my derriere up into the chair. Adam watched, and helped.

We then wheeled me into the bedroom where I made a poor attempt at getting into bed, once again calling on Katherine to help me with my legs, with the lift and flop. Once again Adam watched, and helped.

As all of this was going on, I was watching his face. He had not seen this version of me. I haven't visited here for almost two years, and a lot has gone on in that time. I don't look a lot different, except for the continuing shift of weight from my limbs to my belly; I'm fatter than last time. His expression, much as he tried to hide it, showed a lot.

I saw, reflected there in his eyes, the understanding that things had changed, were changing. He had what I call the "oh shit" look. I can't blame him; I have that feeling a lot. It's part of the overlay, the texture of ALS, that "oh shit" look. It's just another part of my reality, of his reality, of the reality of those around me. This is a progressive disease, even when it doesn't look like it. Things happen, and are happening, even in a beautiful place like Lake Charles.