by Ginnie Horst Burkholder
I remember a Christmas when a dear friend sat beside me in an empty sanctuary. In a room below us, we could hear the annual Christmas party coming to an end with exuberant carols. “I do not feel like singing happy baby Jesus songs,” she said. Joyful celebrations are difficult when life is hurting.
Two years ago I wrote in my journal, seemingly unaware of the approaching holidays.
The sadness never quite goes away but laps in tiny little waves at my feet and then comes crashing in big waves when I least expect or want it.
Home from church today, and there is nothing to eat so we go to Arby’s. The little waves have teased me all morning, and now they are getting bigger. Nelson comments as we eat, “You and Rhoda were having a good talk.” Except I supply her name because he can’t think of it. I know it is a question, but he doesn’t ask. He never says, “What were you talking about?”
We stood in a circle with Austin and his mom and Steve talking about a movie they had seen on TV about a husband caring for his wife who has Alzheimer’s. We discuss how they experienced the movie, how I experience my reality.
“He has good days sometimes?” Austin’s mom asked. I said I didn’t even know how to answer that. When he has a good day sometimes that is a bad day for me, because when he is feeling good about himself and trying to be more independent, I have to go behind and clean up the mess and get him out of predicaments. The waves of sadness grew a little bigger as I talked about my needs that are put aside for his, the issues that I don’t address because he can’t.
So what did he observe? I do not know. But on some level he must know I am sad.
Now I look out the Arby’s window as we eat in silence, and I struggle with what is appropriate to say to him. I only know the hurt inside is too big to go without expression, so finally I say, “We were discussing a movie they saw about a woman with Alzheimer’s.”
There is no response, so I go on. “For whatever reason I am feeling sad today, and if I were you I think I would be throwing that sandwich across the room right now.” His hands have a death grip on his sandwich; they’re shaking so hard he cannot eat and the contents of the sandwich are falling onto the table. “I’m glad you’re not though. Is there anything I can do to help?” I say, as I reach across the table.
“If I put it down for a bit….” I help to pry his hands loose, then reassemble the sandwich and hand it back to him. He takes it. All focus is on the sandwich. I feel a little better having acknowledged the waves of emotion slapping around inside me. I can make it through lunch without a meltdown.
At home we settle in to finish the movie we started last night, “When A Man Loves A Woman.” I cry through most of it with each acknowledgment of pain, each get-real moment, and each goodbye. Sideways glances at him give no clue that he is feeling anything but attentive, which is a feat that he cannot always accomplish. But my stomach hurts from holding back. So after it is all over and he is embedded in a football game, I go to my bed, curl up in a fetal position, and let the tidal waves come crashing in. Afterward I go for a walk.
That evening a pastor friend tells me that we were all created to live in perfect relationship with God and others. We long for what is supposed to be, for what was meant to be. We search for it. We hurt when we do not have it. In the broken world gone awry from God’s perfect creation, we suffer hugely for not being able to have what we legitimately want and need and what God meant for us to have.
So here we all are, in a world that feels like a big leaky boat. Some of us manage to trust the one riding out the storm with us, some of us are intimidated by the storm, and some of us are lost in sheer panic.
Christmas is about hope, faith, and grace. I look back at what I wrote two years ago and acknowledge that holding onto hope and faith continues to be a struggle. But living with Lewy body disease has taught me how much I need grace from Nelson, my friends, family, God and even myself. This much being a caregiver has taught me: I need grace. This much I can celebrate: I am given much grace.
© 2006 Ginnie Horst Burkholder
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