We had a little mishap the other day. He's got a yen for technical toys. He has this monstrous 60" tv. 7 speakers, I think. Lots of cable twisted up in spaghetti like fashion in the back of the tv. Guess who got to untangle the cables? Yup. Me.
He decided to come to the townhouse one last time to help me unravel the insanity. It was rough for him to walk from the garage to the townhouse - it's a jillion step walk. (Which is why we're moving)
We both totally forgot we had no furniture. He can't stand for more than a minute. So he tried sitting on the floor but he can't sit up, either, without support. Holy cats. He slid on his side then his back. He can't roll over without a lot of help.
In my husband's awesomely "let's get 'er done" way, we got the cable untangling done as he laid uncomfortably on the floor. However, a half hour later, I couldn't get him up from the floor. I had to call 911. It was a bummer of a moment. The police were great and super helpful but I know it was just one more thing to chip away at my husband's dignity.
Little things chip away - I can see it. He won't say it. He's too collected for that.
We have a new home health care person. She is very careful with Luther. The first time she walked with him to the bathroom, she held his hand. He can walk to the bathroom on his own. She stood behind him while he peed. I mean really. How would you feel having someone watch you pee?
We have a bidet at home but there are times I have to, ummmm, take care of matters back there. How would you feel having someone wipe your butt?
I don't really know how Luther feels about all this stuff. He just takes it in stride. He rarely gets upset or frustrated. I'm sure he does but he just moves along. I think his mantra is what can you do?
I mean check him out. Tan. Smiley. That's generally how he always is. Sometimes tired. Or really really quiet. But rarely angry or frustrated or mean. Never mean.
He seems to get frustrated when I q-tip his ears. Or brush his teeth. I swear - brushing someone else's teeth is a drag. I can't do it exactly right.
Whether it's having to pull up his pants after he pees or having my dad feed him or having me do all the heavy lifting when we make out -- every thing is a loss. A slow chipping away at the man he was.
We're both new people. Different. This disease has obviously changed him physically. But emotionally we're becoming different. I never thought I'd love anyone this much. I don't think I would've loved him like this if he wasn't sick. ALS made me slow down. Stop taking things for granted. Especially stop picking on things that don't matter.
In Steve Gleason's quote above, he says "we can choose to focus on the beauty of now." I read a similar sentiment from another guy who has ALS. He called this a perfect disease. He writes it sets your soul back to zero, your perspective changes, you get a do-over in a way. The past doesn't matter. Only now.
How do you see beauty in a terminal illness? In diminishing dignity? How can our past not matter? But it is true. It's a choice on what we choose to see.
When I look at Luther, I don't see a skinny guy who can't move his arms. Instead, my heart overflows with love and respect and I want to throw my arms around him and never let him go. I see a man with infinite patience, unwavering kindness and a great sense of humor.
Our time is now. Life is too short. The stuff we fought about, the annoyances and the hurts of the past are wiped away. They do not matter. What matters is right now.