As the Fall semester was winding down, I spent weeks working on a unique project for one of my classes. I was in an independent study called Theology & Ethics of Death and Dying. At my professor’s suggestion, instead of a typical research paper, I crafted a pair of prayer services. One was written for patients with a chronic or terminal illness. The other was written for their caregivers. In addition, I included a short paper on why these services were important and should be a regular fixture in the ministry of the church. This project started off in early October as a way combining what I was learning with my passion for invisible people while at the same time channeling my creative side. it quickly became so much more. It became a way of addressing what I was experiencing at home.
I’m the main caretaker for my mom, who has advanced congestive heart failure. Some illnesses progress in a roller-coaster with dramatic upswings and sudden drops. CHF is more like a Slinky falling down a flight of stairs. It may pause for awhile, but it never goes back up. Over the last year or so, I’ve found most people don’t understand the progression of the disease unless they’ve been through it with a family member. Over the past few months, I have politely and gently answered the repeated question: “Is she doing better?” with an explanation that no major improvement is to be expected. But after months of this, I find myself wanting to scream “Didn’t you hear me the first 30 times I answered you?” On one hand, I try to remind myself that the person asking cared enough to ask but on the other hand, I have reached a point in life where I’ve realized that it’s the not the people who ask that I count as friends. It’s the ones who listen to the answers. It’s also the ones who follow up with a question on how I’m doing and won’t accept my favorite lie, “I’m fine. ”
Working on this project gave me a way to acknowledge the isolation and inherent loneliness that comes with a chronic or terminal illness. I chose scripture readings that acknowledged loss but also conveyed hope in God who sustains all things. I found hymns that brought me strength and prayers that offered comfort. But even as I assembled and wrote, I realized I was struggling far more than I was willing to admit. The emotional impact of trying to be a a good mother, a good daughter, a good friend, a good employee, a good student, and still maintain enough detachment to be a good caretaker and medical proxy had pushed me to the brink of burnout. Simple everyday things, some days even getting out of bed, became emotionally taxing. Okay – so maybe I was past the brink. But what was I going to do? Everything still needed to get done and some things simply can’t be delegated.
In the midst of this, prayer had become more difficult. In the same way I felt withdrawn or removed from people around me, I also felt withdrawn from God. I simply had nothing to say and quite frankly, I didn’t feel like listening much either. And yet, God was the only one not demanding my time and undivided attention. Our time spent at the beach every morning became the only quiet in my days and yet even there, I couldn’t quite take a deep breath and relax. I showed up anyway because I really didn’t know what else to do.
As Christmas break approached, I had time to read whatever I wanted and I picked up Dietrich Bonhoeffer’s Letters & Papers from Prison. My younger son questioned my choice of reading materials. After several conversations, he finally said to me, “Mom, you’re going to get your head stuck. You need to stop reading shop [theology and/or religion] and read something like normal people read. You can’t be a good theologian if you can’t see with fresh eyes and you can’t see with fresh eyes if you can’t look away.” And so for Christmas, he and his brother bought me a light, fluffy non-religious novel. I’ll have to admit that it helped to crawl into a book for a few days and escape for awhile. I bought another by the same author, which I also burned through in a few short days.
By the time break was coming to a close, I went back to reading Bonhoeffer, but as my 16 year-old predicted, I read with fresh eyes. At the end of particularly long, difficult day, I read the following:
“I’ve learnt here especially that the facts can always be mastered, and that difficulties are magnified out of all proportion simply by fear and anxiety. From the moment we wake until we fall asleep we must commend other people wholly and unreservedly to God and leave them in his hands, and transform our anxiety for them into prayers on their behalf:
With sorrow and with grief…
God will not be distracted.”
Letter to Renate and Eberhard Bethge
Written from Tegel Prison
Christmas Eve 1943
In that moment, after weeks of feeling disconnected, invisible, and often unheard, I suddenly felt very much understood and embraced. While I had been distracted, God was not. God heard every word I hadn’t said, followed every line of thought I’d not dared bring to completion, knew every feeling I’d pushed away and then, ever so gently, God let me know I was not alone.
I’m back in classes as the Spring semester is in full swing. The demands for my time and attention are no less than they were before. I still find myself feeling detached and removed. But my time with God at the beach in the morning has again become the one time and place that I can take a deep breath and relax, even for a little while and I know that I will be heard, even when I have nothing at all to say.