Monday, July 27, 2009

What to do when the resurrection is cancelled

We had our nine-year old grandson, Otto, over the weekend, and as always, played board games and card games. Then he suggested Jenga, which we have played together for years. In this classic game you build a tower of finely milled hardwood blocks, which you remove one at a time and stack on top, trying not to topple the tower. But it inevitably does fall with a wonderful crash, and you are never quite expecting it, so you scream. Blocks go everywhere, on the table and floor. Cats don't like it, Otto does. I like that we played it as a cooperative game, all three of us trying to beat our personal group best (32 levels).

As we played, I thought how this game is like the crash and rebuilding of the self, our ego. Something happens, our trip stops working. Today we might say, Time to Reformat. Robert Aitken comments that Zen teachers consider this an auspicious condition, though he didn't know that when it happened to him.

I happen to be noticing my crash right now - last week I talked with an OSU transplant surgeon about my bad reaction to cortisone. A shot in my hip for bursitis in late January led to moodswings that ended only recently (if they have indeed ended). Now I am "on hold" on the list - that is, they have not removed me (that will probably take a committee meeting), but I will not be matched when a kidney comes in.

I thought OSU had gone to a "steroid-free protocol." They're trying. But the first week after a transplant, it is still necessary to load every patient with steroids to prevent the rejection the body is trying so hard to bring off. Every day the dose would be fifty times the dose of that shot in the hip - which sent me into moodswings for several months. Ten percent of transplant patients end up having to stay on steroids. Anyone who goes into rejection syndrome is put on steroids. In other words, there is no avoiding them. (This story is the same at Cleveland Clinic.)

The doctor told me he has been working with kidney transplant for fifteen years, and he has seen what both of us avoided calling by its true name, "steroid psychosis." He was sincere in explaining that you don't want that to happen. No, I really, really don't. The moodswings of this winter and spring sometimes had me just sitting in a brown sludge weeping gently, thinking I'd rather be dead.

The odd thing about being taken off the list was that I did not have an emotional reaction to it, beyond mild shock. No drama, no need to stuff it down with chocolate cake. I kept wondering about that until this morning, when I realized the more complex nature of my reaction - I am no longer waiting for the call that can come any moment and lead to - maybe - a new life. Sometimes transplant works stunningly; that's why I was willing to be on the list and contemplate a life on immunosuppressants. I kept wondering hopefully, Who will I be when I have more energy? It seems to me now just a bit like a remnant of the fairy tales I loved as a child - the girl waiting for the prince to come and rescue her.

This morning I am realizing that I have responded to this event with a new sense of being right here in my life, in this body in the present moment. The bright future has been cancelled (though Tom reminds me there is all sorts of research coming down the pike, wearable kidneys, growing a new kidney from your own skin cells - anything can happen).

Maybe it was the sense of this new blank page that impelled me to ask a friend to move everything out of the big closet in my study that I call my toy closet the day after that appointment, and put in in a metal shelving unit. This study now looks like I just moved in, boxes everywhere. This room was my last priority when we moved in here, and I was worn out and careless. I stuffed in this huge closet all the stuff I didn't sort in the move, all the stuff I didn't let go of. Every single draft of old pre-computer manuscripts, for instance. Old journals and letters. All those photographs. Old books. A pristine Cabbage Patch doll (whose adoption certificate is somewhere in one of these boxes.)

My path seems clear all the way out to the horizon. I can't hold my breath waiting for the call that will change my life. I'll have to just breathe in and out, pay attention to the body I have, and start sorting.

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