This is my wife. She was 14 when this picture was taken, and I wouldn’t meet her for another four years. I helped her take a shower today. It’s not easy. I have to support her head while I wash her and I need to have one hand ready in case she starts to topple from the shower chair onto the floor. It’s hard on her, harder than it is for me. Twice in the past 18 months she’s faded to near unconsciousness during her shower. Today was a good day and nothing bad happened. She joked with me through most of the process and we made it back to the couch without incident.
This is what life is like as a primary care giver. That’s what I’ve been told I am. I don’t often think of myself in that way. I’m not a primary care giver. I’m a husband. My wife’s body betrayed her and I’ve had to pick up some of what it used to be able to do. It’s not hard and I’m not looking for help or sympathy. It’s life. You play the hand you’re dealt. Anything else is cheating.
Primary Lateral Sclerosis. That was the diagnoses fifteen years ago. She was able to walk back then if I gave her an arm to lean on. We walked slowly, an irritant to me since I walk fast. She was always faster. She climbed mountains in Colorado and raced with me on sandy California beaches.
I don’t know what the end game will feel like. I know what it will be. But I don’t speak of it.
She’s napping on the couch this evening, a Hallmark romance playing as background noise. I’ll sit with her tonight and watch an old movie we’ve seen before. If it’s sad, I’ll hand her a tissue and she’ll laugh at herself for having tears in her eyes.