My Small World
Posted October 3, 2016on:
In my pastoral journey with people, I have often reflected that our world starts small and ends small. For the first days and weeks after our birth, our whole world is in someone’s arms, only as large as our tiny reach. As we grow, our world gets bigger–beyond our parents’ arms, beyond our home, beyond our town, out to everything we can explore in the wide world. Our horizons widen and we live a bigger, more expansive life. Then, as age and sometimes disability set in, our world begins to shrink again. I watch elders cease their world travels, then their driving about town, then going out at all, and sometimes even spending their last weeks and months confined to one room. In this human life, our world starts small, and it often ends small as well.
I’ve been thinking a lot about this observation as the chemotherapy cycle has shrunk my world. Just when we have moved to this amazing international city, ready to explore and broaden our world, my orbit has been reduced to its smallest ever.
For the last four weeks, my world has not been more than home, church and hospital, with few necessary (and energy-draining) exceptions. Anything else is beyond my capacity. I should have had a good week between cycles to get out and about, but I caught a nasty virus-turned-infection that knocked me down hard. It’s been two weeks and another treatment since that set in, and I’m still not recovered. (Yes, the doctors are on it.)
Chemo tired is a different kind of tired than I’ve ever experienced. The best comparison is to the first time you get out of bed after having the flu. You don’t have the flu misery anymore, the fever is gone, and you feel so much better you head for the shower. Only you realize halfway through the shower that it was a lot to take on, and you feel like you might pass out before you get the shampoo rinsed out. You might hold on to get the soap out, but then you fall into bed for a long nap to recover. That’s what chemo fatigue feels like to me. I get winded and light-headed, and absolutely must sit or risk falling over. I’m just weak, and I spend a lot of time lying down. We joke and refer to these as my “sad and pathetic days.”
Though I’m a little bit fatigued like that all the time, most days I am able to get up, shower and dress, rest, and then catch a bus that is close to my house and lands me close to church and hospital. (The Tube is too many steps.) I can go into my office and work for a few hours, then have the energy to walk down the street (not too far) for lunch. In the afternoon I can sit at church or hospital for a few more hours and have the energy to ride the bus home. When I get home, I usually need to lay down and rest for an hour or two. Then I get up and enjoy supper with my family, and go to sleep for the night the same time as B, around 8:30. If I am having a good energy day, I might try to wash a few dishes (I can’t make it through a whole meal’s worth), or clean up a bit to help J, or just lie on the couch to watch a TV show. In the last two weeks, I’ve had enough concentration to read again. Once or twice, we have made it out to eat, somewhere close. On Saturday, I was determined to make it to the library to return overdue books. It was a short, flat walk to the bus, just a few stops, then back again. The journey was too much. I got to the library and had to sit in a chair for 30 minutes, drifting off to sleep before I had energy to walk back out to catch the bus home. Today, I had arranged to take the day off so that we could have a family outing in London. J and B had to go without me. I slept until noon, took a shower and dressed, but then I needed to go back to bed. I am using my saved energy to write this instead, while they have an adventure.
My world is very small and simple. We smile as we call it “sad and pathetic.” But here’s the thing: it is enough.
I can hardly believe it, but it’s true. My small, simple world is all I need to be happy right now. I don’t have energy for extras, but I am able to do what I am meant to do–to be minister and mother, and even sometimes companion to my spouse. I am not doing my ministry work with the level of energy and flair that I would normally show, but I am capable of planning and leading Sunday services, tending to weekday business, learning about my new congregation, helping address some administrative issues and more. I am doing enough to make a contribution, and feel as though I am serving God and church right now. That is satisfying.
The same is true for parenting. I can’t take B to the park or the museum, but I have all the time he needs to tell me about his day. I can listen and ask questions and be present in ways that I probably would have been too busy to attend to at normal speed. Every day, we spend time together, even if it’s just with me sad and pathetic on the couch while he plays Minecraft. It feels like enough.
I don’t make a very equal partner to J right now. We have always tried to share the household responsibilities, but he’s doing everything for awhile. While he had planned on being a stay-at-home dad for our first year in London, neither of us planned on cancer. He is understanding and patient with me. I often need to be patient with him, because I want things done my way even when I can’t get up and do them–which is my problem, not his. I don’t have much time to stay up late for conversation, but I still feel like we are close. We are two independent spirits, even after 20 years together, but we are leaning into one another deeply right now. It is enough.
My world is so very small, but satisfying. We can laugh about being sad and pathetic because I am neither–not sad or pathetic at all. (Ok, maybe a little pathetic when I fall asleep all the time.)
From the outside, during all those years of pastoral ministry, I imagined that a huge grief descending as one’s world got smaller and smaller. There are definitely days now when I am disappointed I can’t do things, like see London or just finish unpacking from the move. I get frustrated by my inability to accomplish something as simple as changing the sheets or going out to a cafe to write my sermon. Even so, I am not feeling grief over my small world right now. I’m feeling a great deal of gratitude. Chemo may be slowing me down, but it has not robbed me of what I love and who I am. I am still able to serve as pastor, parent and partner, and those things bring me enormous joy and satisfaction. Yesterday, in spite of feeling poorly, I was able to prepare a special World Communion Service, leaning heavily on lay leaders to carry the Sunday morning leadership. It was wonderful! Then, we came home and watched B’s favorite team, the Jacksonville Jaguars, play here in London. I may have spent the afternoon lying on the couch, but I could cheer and enjoy the time with family. It was more than enough to make a good day, a good life.
My small world is full and rich, and I am grateful.