Ken’s Multiple Sclerosis is a puzzling disease. Everyday is a surprise. Neither of us know whether he’ll have a day free of fatigue or one that is full of it. We hope the different holidays throughout the year will end up being good days, but as time goes on, we’ve learned MS doesn’t care if we have plans or not.
The Fourth of July this year was a particularly bad day for him. In fact, he fought to keep his eyes open–literally. Not that he was tired. The muscles in his eye lids refused to work, no matter how hard he tried to fight them.
Needless to say, the downtown parade was out. He made me go to lunch at a friend’s home because we are invited every year, and she was expecting us. By evening, he still wasn’t feeling well enough to watch the fireworks–not even on television.
The day was a wash for him. I found myself very angry at the cruelness of his disease because no matter what he feels or thinks, the disease calls the shots. I suppose any serious diseases has the say-so too, but I’m not living with them. I am living with this. I want to shout, “It’s unfair!”
But this thing we call the human condition is not fair. We both accept this fact, so when these days come along, he rests, and I keep quiet and read. It’s called coping. It’s called love.