ways to be home

Dear ones,

How shall we talk about this? What do I say?

Everything changes so quickly and at once so slowly, dreamlike. We are still here, but we are inexorably changing.

For so long I have known none of us would get out of this alive. And I knew in my head, and deep in my guts, that what they were telling us was that Val would go first. But each day I was able to take a slow breath and say, Not today. Val isn’t dying today. These things are going to happen, something is going to happen, but not yet. Not right now. And then I could feel with my toes under the slippery water for a stepping stone, and I could occupy that day.

Steadily, along the way, small pieces of ordinary life began to flake away: Val rode her beloved bicycle, Hum, less and less, and one day last fall she quietly stopped. Ordinary conversation grew sudden shadows; ordinary phrases like “in the spring” developed a tinny echo. I had to ask other people to dig that hole in the garden; carry the vacuum upstairs; walk the dog. She couldn’t push me in my wheelchair anymore, but that was okay, because I could walk a little more, and at some point the pace of our respective movement in the world converged and we could shamble along together under the rainy trees.

Val grew slender, and then thin, and we pushed most of her pants to the back of the closet. She coughed more, and then more; and then somewhere along the line she stopped laughing, because laughing makes her cough and coughing makes it hard to breathe. I miss her beautiful laugh so much. I miss making her laugh. I miss the communion of shared laughter.

Then there were November and December, with all those weekends in the emergency room, all those 4 a.m. phone calls and bleary reunions in well-lit corridors. Surgeries, hallucinations, beeping monitors. The moments when she opened her eyes again and saw me sitting in her line of sight, waiting, and we looked at each other and could rest there.

In January radiation dragged Val through its cruel sands but scoured out her breathing for a while. She understood better than I did that her window of freedom might be brief. She took herself to Death Valley, and her sore limbs carried her up over the rough rocks in that gorgeous and lonely landscape, one of many strange places she will visit alone.

Now the tumors in Val’s lungs are closing in, closing off. She rasps with mucous when she breathes, even with oxygen tubes chafing her tender nose, even when she sleeps sitting up and shifts position so carefully, trying not to antagonize her laboring lungs. She is tired, my dear ones. She is so tired. Her mother has died, and her own cancer is growing, and the radiation has bashed her around again. In these last few weeks Val’s sweet body has become so weak that there have been days lately that she was physically unable to leave her bed. Unable to pull on her clothes without help. It seems to me she is coughing a bit less but if her breathing has improved from the radiation it is by such a small margin that I can’t tell. There may still be improvements over the next week. I want that for her. I never knew what this would be like until I came here but if it would help to give away all my possessions, every treasured memento and piece of art in my house, that would be so easy for me to do, if it would let Val breathe.

Ah, but it won’t.

We don’t get to make those swaps.

My mysterious feet keep improving, step by tiny step. I walk a mile around the nearby campus lake most days now. It hurts, but I can do it. I have been watching spring happen there. Tiny shoots have grown into green confetti and then into leaves. This week I watched bushtits, chickadees and four brook lamprey all engaged in building and tending their nests. I saw an adult hummingbird gather nectar from a flowering currant and then feed it to its fuzzy baby, each long beak opened to the other. Tonight I sat on a log and watched mama geese brooding on tuffets of long wetland grass, busily plucking downy feathers from their breasts and poking them underneath to cuddle their eggs. I saw raccoon hand-prints in the mud. I take pictures on my phone and send them to Val. It’s been five years since we’ve been able to hike together. I miss that too.

I am taking a leave from work. Everyone has been so kind. I had finally reached a point where it wasn’t tenable for me to work and simultaneously to live this intensive, precious, quicksand life at home. Everything has been so urgent these last couple months that it feels like weeks since Val and I have had a conversation that wasn’t logistical or medical. Now that we are back from Montana, now that I am home from work, we are sometimes able to talk. When her pain and her breathing don’t demand so many drugs that she floats away. We talk, or sometimes we just lie looking out the windows, scratching the dog’s nose. I adjust her oxygen, empty her spittoon, keep track of her meds. I try to help her breathe. I read aloud from our current book and she does the characters’ facial expressions. I’ve read aloud to her for years. It feels like a way to be home.

Our whole radical intentional family is there too. There isn’t a minute of the day we don’t have other people coming and going, washing dishes, walking the dog, loving on Val and telling her the gossip and helping with her meds and her oxygen. I have been talking about me and my heart, and Val, but there are so many of us in this story. This story of sorrow and love and community is absolutely enormous. It is one of the best things I have ever seen.

I fell for Val in the summer of 1998. We began with a trip to the beach, starlit motorcycle rides and (I kid you not) a legendary mud wrestling tournament. It was a heady first two weeks, and then she went on a trip to see friends in Alaska, and I was glad. I remember writing in my journal that I was glad to have a little time to myself, to think my own unadulterated thoughts. To kiss my old way of being goodbye. I knew from the start that Val was extraordinary. I knew that the thing about to happen between us would be huge and astonishing; and that nothing would ever be the same again.