There is so much to say that I don’t know how to tell you, so I thought I might start and see how this goes. I want to say that Bill’s experience is his own and I want to acknowledge all that he has done to heal for his own sake and for ours because he has worked very hard and made many changes, and has gotten through difficult things, as he always does, with gentleness, dignity and persistence. Now I will speak from my experience as the partner of a person who has had cancer.
I have lived with illness before but I didn’t know about the particular ways that cancer would mess with my head. There is a “what’s behind door number one?” aspect to it, an uncertainty where everything that matters is waiting on just a few moments when you find out about the tests. I have always been a person who likes to think of all the possible solutions, but how do you solve problems when you don’t know what they will be? We were in a new country, with a new language, many procedures, and new rules. There was so much at stake but we didn’t know what was reasonable, we didn’t know what to expect. It was hard to find our bearings. A doctor would throw out, sometimes almost at random, a little morsel of news like, “A few weeks won’t make any difference.” and we wouldn’t know what it meant. Of course we talked to everyone, researched everything, and made the best decisions we could make as we slowly gained information. But I felt like a squirrel, crossing a road in traffic. “Should we keep going? No. Go back. Get another opinion? Find a cancer center? Not yet. Keep going. Wait.”
We were off-island a lot… this is a particular thing about where we live because ferries don’t run very often in winter. And it’s a thing about cancer in general, because there are so many parts of the body that need to be poked at and measured by various specialists… urologists, nephrologists, oncologists, anesthesiologists, cardiologists, pulmonologists, vascular surgeons, and so on. It only took a few appointments for us to be away from home for a week and a half. So that happened several times and ferries cancelled and there were snowstorms and the power went out and Bill lost 12 pounds in January alone. And that was before any procedures. Then some medicine caused thrush and more weight loss and there were other issues. Our personal favorite was that Bill had a stent running from his kidney to his bladder. If you read about these online you will find out that they “occasionally cause some discomfort”. What that actually meant was that Bill’s bladder was more intolerant of outsiders than Japan in the 19th century; that it freaked out, cramped up and constantly tried to dislodge whatever did not belong there. What this meant was pain greater than that associated with childbirth and it did not respond, not even to morphine. And Bill lost more weight. And we finally got it under control with muscle relaxants and bladder analgesics, but it still woke Bill up every 15 minutes all night long for weeks.
And this, I have to tell you, is what can be described in the world of cancer, as a fairly easy time. It was all in the context of what finally came to be a very good prognosis. We could feel that we only had to keep going for a little while longer and that Bill would be fine. We would be fine.
We learned which doctors and practitioners we could trust, and we learned how important it was to have people we could believe in. And we had friends and family, some were in the medical profession and some had been through this journey themselves. They helped us again and again, answering questions, doing research, responding when Bill was in pain.
Bill’s children and their partners took time off from work. They called. They travelled long distances, sent cards and emails and videos of our grandchildren. Bill’s son stayed by his side in the SCU for two nights in a row. They loved. They worried. They asked careful questions. They offered to talk. They faced it.
I thought about so many friends who have carried their loved ones, stayed with them through every moment of a truly indescribable process. I realize now, that there is a confederation of people who immediately know, who offer recognition and understanding. I learned that there are people who will do almost anything for another cancer family. These are the people who disagreed when I said that I felt crazy. They said I wasn’t crazy. They said they had felt the same way too. They said I was taking good care of my husband. They said to rest. They said I could call any time. This is what I lived on.
I didn’t write and I only took a few pictures. I had no big insights. No doves flew down from heaven. There was one time however, at about 2 in the morning, when I woke up with a very strong feeling about beauty. I thought, “What if no one had ever been here to see it?” It made me so sad just to think of it, a vast unconscious universe filled with lonely beauty. And then I thought, “That has to be impossible. There has to be a reason.” I thought, “I want to see the beauty that I usually forget to notice.” “And the beauty in hidden places.” “And the beauty far away.” And I set myself to feel my way into all that beauty. What about that clear, deep methane ocean, for example, on that especially calm night, on that moon where the rings of Saturn splay across the sky? With that the softest distant light, reaching down into that ocean, fading into depths and darkness? I thought, “Why is everything so beautiful?” and then I fell asleep.
Bill is so much better. His stent came out last week and each night he’s gotten a little more rest. We’re home and he’s eating and he’s gained a couple of pounds. He’s off almost all of his medications. Bill has always been a very smart man who has lived in a thought bubble over his head. Well, now his body has got his attention. He’s becoming that good habits guy, that water-drinking guy, that vegetable loving guy and pretty soon he’ll be that guy who exercises every day. I’ve done our taxes, started getting the house ready to rent and the boat ready and I’ve started going for walks and carrying my camera and my backpack. There are physical sensations - my camera harness across by shoulders, my backpack on my back. It’s like putting on a favorite jacket, resuming a well-loved life.
But I do feel a little bit changed. I recently read an anthology of the writings of Abraham Joshua Heschel. He was born in Warsaw, studied and wrote poetry in Vilna and had begun to write books in Berlin in the 1920’s, when he had to flee through Poland, to England, and finally to the United States. His life declared the sensitivity, rigor and richness of his Hasidic lineage, and his words reflected both the depth of his Jewish identity and his secular study in Vilna and Berlin. He said a wonderful thing. He said that people could let their souls and the sky be silent together.
Let our souls and the sky be silent together. Isn’t that perfect? I mean, the silence part is excellent. But what I like most at this particular time is the part about being together. So that’s how I want to take pictures, to understand that what ever it is I’m taking, that we are actually together. Me and the sky, me and the river, me and the ocean, me and the stones, me and the trees and the birds and the rain on the window and the new spring buds and grasses.
When I put my mind on something, I turn it in every direction, live inside it, gnaw at it. I seldom put it down. I’ve been putting my mind on cancer. It will be good for me to think about beauty for a while.
Do you know what I think right now about beauty? I give myself to beauty and it gives itself to me. Everything feels intimate when I’m in my beauty. And where ever I go, I know that beauty will always be there. It’s a call notice, a call to come closer. It’s the opposite of thinking that I could ever be alone. Beauty is here already. It’s mine whenever I open my eyes, or even when I imagine. But the way I craft my life from the beauty I’ve been given - that is up to me. Here is another good quote from Rabbi Heschel, “Remember…that there is meaning beyond absurdity. Know that every deed counts. Every word is power… Above all, remember that you must build your life as if it were a work of art…” (1)
I want to thank you for reading my blog, for taking time out of your life to do so. I don’t know if I could form my thoughts if you weren’t there to read them. I have deep respect and good wishes for you. May we all claim our freedom. May we all know our beauty. May we so build our lives.
PS. I want to explain to you about these pictures. I took out a picture from the last blog and I worked on it in Photoshop so that it was half way between a photograph and something I could imagine. And then I picked out certain sections to show you. It helps me to do this sometimes, because it removes the fog of what I take for granted... there is underlying structure, the way that light touches everything, the way it all fits together. And looking more closely helps me see the beauty I missed before. I've been looking at these pictures all morning, and it's like I've fallen into them, looking at all their little secrets. It has started to make me happy. If I had to put words, I would say something like, "I see you. I see you."
I'm pretty good at soldiering on, and the harder things become in my life, the less I directly feel about them. But when I'm returning to this kind of beauty, my heart begins to get lighter. I can rest from all that we've been through in a context that I trust, where I have learned again and again that there is more to beauty than I think, that it points to even more beauty and even perhaps to ultimate safety beyond what I can perceive.