The utter helplessness in the face of such horrific suffering and interminable decline is a pain I wish nobody had to endure.
As my friend worsened, I would rage at friends and family who peddled false hope with their quack "cures", internet remedies, and religious nonsense. But he was the picture of grace throughout his final decline, warmly welcoming visits.
The last time I saw him, he wanted to just chat for a few hours. But I couldn't sit still. I massaged his feet and refilled his water bottle and shifted his body to provide a little relief from the constant discomfort of bedridden life.
At the time, I thought I was helping him. But I realized after he was gone that he was helping me, giving me something to do so that I didn't feel so damn powerless.
I don't know why I'm writing this. I haven't really talked about it with anyone. I think about him every day, and my heart goes out to anybody suffering from a debilitating disease -- both the sufferers and their caregivers. Every day becomes a fight for dignity and humanity.
If I took any lessons away from the horror of that year, it's the power of listening. Just listen. Don't try to judge or fix or explain anything.
I think I helped most when I just sat and listened. I wish I had done it more.