If my life were a playlist, this conversation is on regular rotation:
I say, "Don't you think we should take ________, just in case you're tired later?" He says, "No, I'll be fine." I say, "It seems like you're having a harder time with ________." Silence as Pete begins to leave the house just as he was. I add, "I'm just saying that it might be easier for me if we had options once we got there."
At this point, my heart rate is elevated. I remind myself that he is the most stubborn man in the world. I shove the walker in the trunk, taking special care to slam every door I can, I begin to ask, "what is the matter with me?" I feel ignored. It's easy to feel ignored as the caregiver... it's easy to be ignored as the caregiver. I spend a lot of time caring for my partner. Our shared life has shifted in so many ways. I do different tasks than I used to. He has other tasks that he needs to do in order to care for himself. And there are things he no longer can do. And neither of us are very good at asking for help.
I am notorious for wishing Pete would acknowledge his limitations when I am unwilling to acknowledge mine. When I am rested and well fed, when I have exercised my body and employed my creativity, I am at my best. I have no problem juggling our personal life, his illness, and my career. But I work a lot and I often go without protein, I skip the gym and watch television and my well of grace runs dry. And that is when this conversation repeats itself. After I freak out... after I wallow in my own neediness... after I sleep on it and find some protein, I'm so ashamed. Who yells at a chronically ill person? Who slams the doors of her car because her husband, who is chronically ill, asserts his own will? After all, he doesn't get his way often. And he's not really ignoring me. He loves me. And deep down I know that whatever happens, we'll figure it out... together. Then what's the matter with me really?
I've discovered that I'm human. And so is he. We both would rather be "super" human. He always wanted to be the lone ranger... silently fix the world's ills. Folks yelling after him, "who was that masked man?" And my friends voted me "super woman" in college. But he's not the lone ranger and I'm not super woman.
He can't fix this part of our life. And I can't manage this part of our life. And we're tired. And sometimes we're hungry. And we're restless with life's challenges and dreams. Our well of grace runs dry.
What is this blog about?
These are some of the reflections that I am fashioning into a memoir about coming to peace with my husband's diagnosis of multiple sclerosis.