goodbye to uncomplicated joy

When you take care of someone you love for a very long time, the world narrows. There's a distillation of your experience, a falling away of everyday things, and the world outside becomes another place - a place you no longer live. A place where people go to work and school and exercise class, vacations and concerts and parties; a place where people complain about roof repairs and back pain, ornery children and stubborn spouses; a place where people eat, drink, speak, and breathe easily, without a second thought. I took care of Mike in our own vivid and harrowing world for so long. It was soaked through with the pain of love, and the vision that love grants, so much so that I could often only participate for brief moments - I had to maintain my ability to function and so usually hovered at the periphery, while Mike in his profound courage remained open to grief - and grace - much of the time.

How often did I glance at him while the children were having fun, laughing over something absurd at dinner or watching a funny movie, and see tears in his eyes? He was already walking the path that was waiting for me. I now cannot see the end of it, let alone any variation in its rocky terrain.

I often sought distractions when we were traveling to Philadelphia or New York for treatment, or during endless waits in exam rooms. I always brought a book. I liked to listen to an audio book on our drives (the same one for months, Kristin Lavransdatter; I loved it but now am terrified by the idea of picking up where we left off). I would arrange child care or update family and friends via text in waiting rooms, or while we sat in the emergency department waiting for Mike to be admitted. Sometimes he napped; sometimes he was too feverish or uncomfortable to focus anyway. But usually he preferred to sit quietly and wait. If anything, he'd review notes and questions we had for the doctor. Once I asked why he seemed annoyed with me for reading a magazine - and honestly, the plentiful glossy magazines at the cancer institute got me through those first months of chemo and radiation; they were soothing, shiny reminders of the world outside that I then hoped was waiting for our return - and he told me that he would like it if we two could be shoulder to shoulder, holding hands, facing down the cancer beast all the time. That it seemed we were more likely to triumph if we spent all our available focus and energy staring it down, two warriors taut, poised, and ready on a battlefield, gazing at the horizon, waiting for signs of the enemy approach.

That's not a good way for me to cope with this day to day, I said. I need breaks, I said. I can't stay that vigilant; I'll fall apart.

I know, he said. I know you can't do that. I just wish you could sometimes.

Now I feel a pit of guilt when I think of that conversation, and of how little undistracted, focused time I gave Mike. I know I did the best I could. But I wish I could have done better.

I had to keep one unsteady foot in the outside world, where our children went to school and sports practice and music lessons, and where I sometimes worked. But Mike really did spend most of his time in the battlefield/monastery/hospital. His reality was the real, saturated, painful, heart-filled center of my life. Even though he did most of the emotional heavy-lifting, we both saw life as achingly precious, all the time, because it was so constantly threatened. We felt the fragility of sweetness: the adorable linguistic accidents that come with being three, a phrase played on the piano for the twentieth time, a fluttering bird at the feeder. All of it was so crushingly beautiful. During the brief times Mike could enjoy a spell of better health, he would sometimes get frustrated by how quickly he lost that cracked-openness to life's excruciating beauty. But Mike, I'd say. It's hard to live like that all the time.

Once we were talking about his probable death, in one of the rare times we were alone and I allowed myself to walk into that grief-space with him. I was sitting at the kitchen table and he was standing nearby in a flannel robe, pulling out his meds from the cabinet. In a fit of sorrow and despair, I blurted that if he died, I would live my life for the children. I would be for them. They would be my reason. He didn't need to worry; I'd take care of them. Because what else would I have?

And now I do live for them, it's true. But sometimes, surprisingly, I also feel the tug of my own unfolding being. I feel my own self asking for my attention and care.

But it's terrifying to want things just for me. Living my own life means actively signing onto a life without Mike. How can I want to keep putting one foot in front of the other, forging ahead, knowing Mike isn't alive here with me?

But I do. I want wonderful meals, and friends new and old, and fantasy yoga retreats, and good books and movies and music, and October hikes, and generous glasses of wine. Some of these are things I would not pursue with my husband, because he wouldn't enjoy them. Some he would absolutely love. Some are things I want because he died and I feel an urgent need to tend to my bottomless grief. In any case, the wanting them, and the doing them, are all colored by the loss of him.

Everything shines brighter, more ragged and raw, through the eyes of grief. Everything from my morning coffee (he would shudder to see how sloppily I make it) to the disappointing session at work (I can't tell him about it) to the unbelievably difficult and stressful house-selling process that was supposed to end at settlement this past Friday and is still unresolved (he would be screaming - throat cancer or no - to the powers that be at the title company and realty firms).

I can't join the outside world after all, because I still live outside it. Once I spent my days in the intensity of caregiving and medical management and parenting with a gravely ill partner; now I live in the pure, searing intensity of mourning.

Nights are terrible. I can't give up and go to sleep - I seem to be waiting for something to change. Waiting to end the day differently, somehow. Waiting for Mike, I guess. Mornings are equally bad. Seven months later, waking up in the still darkness without my husband is a real bitch. But a lot happens in between these sorrowful bookends. They frame and put into relief the miraculous nature of creation that reliably shines into my days. Colors are more vivid; feelings more powerful; autumn's beauty tears through me with a relentlessness that seems almost cruel. That light! That golden late afternoon light illuminating the bricks and tree limbs of downtown Lancaster. It hurts me. 

We're in a new house that Mike never shared with us. We're creating new routines. We're trying to be honest about asking for the support we need and we're trying to receive it graciously. We fight and cry a lot. We're basically fumbling around in what some people have called "our new normal." Good God, do I hate that phrase. There is nothing normal about this.

Yet there are many good and true and beautiful things in our lives, and I open my arms to them knowing that the pain will twist and pinch even more. Every joyful thing must be greeted in the light of my love's absence.

I cannot say no to joy; nor can I ever feel it with the pure simplicity I once did.

Mike died, and nothing will ever be the same. How could it be? And yet I miss the irretrievable, normal, outside world - and our place in it - so very much.