I guess it doesn't go away because I flipped my emotion switch off. It's simmering around somewhere.
Ed is so tired all the time. Maybe it's his tiredness that makes me realize I can't be tired and sad all the time, too. My job, my goal is to make his really small world a comfortable, safe place. Not necessarily happy. Sure, I want him to be happy. But I think peaceful is a better word. Content with what we have. Staying grateful and positive. It's a challenge.
ALS is a disease of change and loss. It's constant. We pretend we have some respite from it, but it's always there. He lost his arms and hands. Then his legs. Lost his job. Mobility. Intimacy. He can't eat anymore. His dignity has been chipped away. The amazing thing about Ed is he goes with it. He is such a quiet force. His strength is incredible. I rail against the world, take my frustration out on food. He's still my rock through all of this. I can only hope I give him some sense of stability. I hope I make him feel valued and so very loved.
At this stage, 3 1/2 years from diagnoses, we wonder what's left to lose? His voice. His lung capacity. His life. That's what we silently wait for. This insane limbo, waiting for the proverbial shoe to drop.
We don't talk about much about it. Or really, even consciously think about it. I admit I'm always looking for the signs. How's his breathing? His voice gets so weak, he can't talk. Every time he coughs, I wonder if this time, it will lead to choking.
We don't talk about much about it. Or really, even consciously think about it. I admit I'm always looking for the signs. How's his breathing? His voice gets so weak, he can't talk. Every time he coughs, I wonder if this time, it will lead to choking.
Over the last several weeks, he hasn't been out of bed much. Says he's too tired. It's too hot. I encourage him to get out of bed. It seems like the right thing to do.
I never thought about losing the ability to get out of bed and sit up in his wheelchair. We talked about it yesterday and again today. He just doesn't want to get up. It hurts his diaphragm. He feels all scrunched up.
So now that's the latest loss. He said he does not want to get out of bed anymore. I asked him how he felt about this change. He just looked at me and smiled. What can I do, he asked. It's ok, he said. It feels better to be in bed. He's comfortable. And that's the thing. That's what life is about right now. Comfort. Making his life easier. Safe. Peaceful.
