Confessions of a Care Partner

The worst part about loving someone is watching them suffer. Selfishly, I hate that I cannot help and frustratingly, I hate that I cannot understand his pain and his exhaustion. Sure, I’ve put my body through the wringer. I know what it feels like to be utterly gutted from physical effort. I know what it feels like to ask your body to do more and it just won’t. But my suffering is voluntary. I can stop at any time. I get to put myself through pain and it often takes many miles to get there. 

I never would have believed you if you told me 15 years ago that I'd understand love the most when watching my husband sit through a day's worth of intravenous medication. And that I'd feel guilty for hours spent running sometimes not because of the time away, but because it's something that he'll likely never get a chance to do.

I often paint a pretty picture of what it is like to love someone with multiple sclerosis. It’s true that it gives me a more positive perspective on my own health and it’s true that I usually feel like I’m more grateful for each day that I get to do the things I love. But there are days that it is dark. And there is no sugarcoating the parts that feel hopeless. To watch someone who used to be able to bike alongside me on a run become drained after 8 minutes on the recumbent bike. To watch your 42 year old husband struggle with putting on his pants and taking off his shoes. To listen to his fears about traveling. To worry every day that he is going to slip in the shower or on the stairs when I’m not at home. To pick him up off the ground when his legs betray him. 

I hurt when he hurts and yet, I don’t feel like I have any right to. Who am I to get upset when I am more than fully capable? It’s maddening to feel resentful for something I know neither one of us have control over. It doesn’t happen that the waves of anger wash over me, but when they do, I feel it rise up in my body, ready to scream at the world, “it’s not fair!”

I am envious of those couples that get to go for evening walks and wives who get to have their husbands for pacers. I want to take him to places I hike and run. I want to not worry about the lawn work or hauling stuff up and down the attic stairs. I want to drive to a store together and not worry about if there will be a handicapped spot available.

I’d trade anyone all the “benefits” of the handicapped parking spot and the shorter lines at TSA to have one day with a healthy husband.