Life Is The Gift.

I found my husband curled up on the floor of his bedroom earlier today. He'd been mopping the floor in his room and the hallway while I was reading the newspaper. 10 minutes or so went by and I noticed all had become mysteriously quiet. I wandered the short distance to the hallway, looked in the bathroom and looked in his room. I didn't immediately see him. I glanced at the bed and then back down the hall and I heard him stir. He was on the floor, waking up. He'd become so fatigued he'd just lain down and fallen asleep where he was. My heart broke.

He told me not to worry. This often happened to him while I was out of town. No. What? I don't want to ever leave him again. Although we both accept that I may have to travel for work, I certainly can't continue the practice of leaving him for 6 months at a time. It is too long and too hard to be away.

Sometimes he lays on the sofa for what seems like hours just looking and puzzling over his fingers. Why don't they work like they used to? Sometimes he picks up the guitar and fiddles, and puts it down again in frustration. Sometimes his skill comes back and he is again the Adept Guitar Player.

He pushes himself to do bits and pieces of renovation to our home. He does chores and goes out on errands. He comes home exhausted and spent walking in and out of the hardware store. Walking is hard. Getting in and out of the car is hard. Finding an empty handicapped parking space is near impossible (another blog...) Target is a big deal. The mall is unthinkable. His world has become very small.

And yet. He greets each day with hope and joy and cheer and courage. Music is always playing in our house. Sometimes it is the strings of his guitar, but more often now, it is the radio or downloaded music.

He chats with me while I'm cooking dinner. I love that. In the morning he has so much energy (and I am still a bit asleep) he has a world of things to tell me. We so enjoy spending time together, we still laugh and are silly and revel in the new discoveries we find on Netflix or in the New Yorker or LA Times. We discuss and argue politics. He is intrinsic to my job hunt. Interested and integral, really. But... I would rather stay home with him than travel the world. His company, in the end, is everything.

I want you to know what a hero he is. He is alone in his suffering and very few people ever see it. Our friends don't seem to "want to go there." They are satisfied with the dismissive words he and I both use to make them more comfortable. Few people explore further. No one asks him what has happened to his art. No one asks about his music, and how hard the loss of that must be for him. No one talks about his achievements in that art. I don't understand people.

My husband and I had a 30 something friend, Kerry who was dying. We visited him every Monday we could, during his last year. (He died at 40.) Kerry told us the best thing about our visits was that we would talk about his health, or lack of it. We were willing to talk about his death and we did. His closest friends couldn't face it and this troubled him. He needed to talk about what he was going through. He needed us to jump into his bed and feel his tumors. "See, here is a new one." He needed witnesses.

Illness is a part of life. It is fucked up and ugly, but there it is.

I'm sorry to say, you will all face something like this sooner or later. I hope you are never abandoned. I hope you all have the grace my dear husband has and find joy in each living moment. Life is the gift.