~ Life, death, and the final days of struggle with ALS ~
The moon is down - Shakespeare
When he would cry, he was silent. His face was not unlike a newborns – scrunched and folded, red, swollen, mouth wide open and wet, eyes tight and for that long, breathless moment – no sound. But with John, there was no bloodcurdling scream following that terrible pause. Like Edvard Munch's painting, John's scream was silent. And as I learned, the silent wail is far more horrific than the audible.
"nobody, not even the rain, has such small hands" e.e. cummings
What I noticed first about John were his hands. They were the most beautiful hands I had ever seen; large, angular, sculpted as if carved from stone. They were lovely. At the end, though, his hands became foreign; someone else's hands had replaced his once strong ones.
Now, these hands were small and thin. They were white, almost a bluish white really, long and narrow, without muscle or strength; more like a woman's hands, fragile and soft. They lay slack at his sides or wherever he asked me to place them. On the tops of his thighs, he liked them there, warm. He laughed once at how rough and strong my hands felt now, his being so very sensitive to their touch. So, as I once again moved his paralyzed hands I was even more aware of their delicacy, of the strange beauty in their lifelessness, their almost ethereal sheen, and I tried to remember what they looked like so long ago, strong, able and pulsing with life.
Can't walk, can't move, can't dress myself. Can't speak, can't swallow without choking, can't pick up the cat, can't go to the bathroom, can't blow my nose, brush my teeth, scratch an itch. Can't say hello, can't say I love you, can't play my guitar, scatter birdseed, touch your skin, hold your hand, can't say it will be okay.
Can barely smile when I want to laugh. Can still cry silent, wet tears, but without sound. Can nod my head but with some pain. Can try with all my might to communicate my gratefulness, my love, my sorrow, my friendship and, my will to live. Can be held without holding. Can accept a loving embrace with much gratitude but even greater loss. Can close my eyes and dream of better times. Can dream of limbs moving freely and fluidly, without pain. Can dream of running, of making love, of grasping a hand, moving my arm around a shoulder, pulling up my pants, lifting a fork to my lips, swirling wine in its glass, stroking the cat, peeling an orange, strumming strings, turning the page of a book, brushing the hair from your eyes – all things good and worth remembering. Can still love and be loved.
But even that cannot make life worth living when you know it is time to say No More. When the reality of the Cant's overweighs the memories of the Can's, and the unbearable pain makes even the most beautiful of past Can's seem blurred and harder to recall. Then, the final strength comes in the decision to let go. To let go of living on memories. To let go of the faces you love so deeply it feels like a swift kick in the gut; to let go of all earthly things that once were beautiful and held hope, all you knew and cherished. To let go of all that one knows, completely, without reservation; to give way to the unknown and say goodbye to all familiar and warm. To close one's eyes and embrace what comes next with dignity and grace and the knowledge that you accomplished all that was truly important – to love and be loved and to be good.
Then sleep comes naturally, thick with Can's. Forever awaits in some new place perhaps not so far away after all. So tired of all the Cannots. So ready to toss them aside; to shed this heaviness of skin and bone and all those memories and swim with light, strong limbs through weightless clouds. I've let go because I Can. It is the last thing that I can do.
"John, you okay?" I would call out from another room, just to make sure. "Yes," he would answer, so small I could catch it in the palm of my hand.
"A robin redbreast in a cage sets all heaven in a rage" William Blake
Many times, I felt like that robin. "That's me," I thought, "a trapped bird." A free spirit, barely still, but free enough to feel the bars, on the worst of days, the trappings of all that responsibility, the losses, the corners that were getting closer and closer each moment. And where would I have flown had that cage door been opened? Where would my wings have taken me? I would have probably circled the rooftop, the yard, flown high above the cove and reach, taking in the fresh bite of salt air, the smells of the earth, the warmth of the sun across my feathers, hovering in mid air as I gazed longingly at the horizon, then quietly, resigned by the pull of my own heartstrings, I would have flown home, to John, from where I began.
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