Life, death, and the final days of struggle with ALS.

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~ Life, death, and the final days of struggle with ALS ~

The moon is down - Shakespeare

Silence

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.

Hands

"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.

Life, now

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.

Care

"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.

Flight

"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.

Answers Not Yet For The Knowing

What are you thinking while you lie there dying? Are you thinking those profound thoughts that only the healthy, the not terminal suppose that a dying man thinks? Things we cannot possibly comprehend, the meaning of life, was it all worth it, the summing up and evaluation of all that was said and done? Or is it more feeling the dying process? Does the mind slow down to allow one to truly feel, perhaps for the first time, the systematic rhythms of the body, the pumping of blood through the veins, the beating of ones heart, the tingling of the skin, the sound of ones breath, of all organs churning, pulsing, doing one last gig before the final curtain?

When you lie there so still, so quiet, gazing skyward, eyes fixed and glassy, and I walk into the room and you seem startled by the intrusion, what was happening for you? Do you think only of death? Of letting go? Of will it hurt, what will I see, is there anything afterward, will those I leave behind be okay? Or are you so far past that point that you see and feel only rocking; the primordial cradle of waves and warmth and darkness. Are you comforted? Are you okay? That is what I need to know.

Selfishly too, I want to know more than that. I want to know what you are just beginning to know. What I will not know until I, like you, lie dying. Is there a wonderful release when you finally let go? A warm blanket of freedom that suddenly caresses you once you've said, it is time? Does the brain, your thinking, resort to a place, a plane, that only functions as a home for acceptance, love, release, freedom from the prison of a dying body, of this world? Do you see things differently? Do you see different things? Do you see loved ones who have gone before you? Can you feel them, can you hear them, are they calling you to join them?

You didn't know if there was anything after death. You told me so. I wanted to believe that you believed there was something. "I'm not sure," you said, "I don't know." How could you? But you promised me you would let me know, somehow, someway. "Let me know," I whispered. You nodded that you would and gave me a look so foreign, so far from anything I have ever seen or understood, that I knew if you could, you would keep your promise. I think you were perhaps more surprised than I. You kept your promise. And while you gave me the gift of "knowing" that there is indeed life, a force, an energy, a spirit (what do you call this?) after the body is gone, you gave me an insight that not everyone has been given. Now I know. And perhaps the greatest gift of all is not being afraid. In the knowing, I am not as fearful. That, is one of the greatest gifts you gave to me.

Faraway

Toward the end and during the most difficult of days, daydreams and fantasies were the tiny secrets I kept in my pocket. So tired, so helpless, when all chores and responsibilities were done, for now, I would reach into my pocket and pull from my handful of polished stones that were my daydreams. If only for a moment, I could close my eyes and hold onto those little stones, and transport myself to someplace faraway where everything was easy and good.

By holding my lids tight, I could get just enough dream darkness to pretend that I was happy and hopeful, that I was suddenly young, beautiful, filled with life and endless possibility. I wanted to remember what it was like to be held, to hold, to let go of the weight of thought and process and just be. I would dream of making love again, sometimes with John, sometimes not, with anyone that could hold me and make me forget. Daydreams and fantasies are mostly to help us forget. They are our secrets, our safety nets, our crutches when the real world has failed us or crippled us of our options.

These journeys were safe and far enough away so not to harm. I was often on a beach, a lovely white beach, or in the African bush surrounded by the sounds of the wild and heady scent of flora and fauna. I would lie on my back, limp, looking skyward, into the clouds that we always hope will hold all answers to all questions. Drunk by the sun, bathed in the perfume of flowering trees and grasses, I would be made love to by a faceless stranger, whom I loved and loved me. I wanted to feel the strength and heaviness of a body on top of mine again, to remember what it felt like to feel the freedom of passivity, such abandon, such lightness of spirit. I wanted to feel, but only tactile feelings, my head aching from so much thinking and taking care. With my body neglected and my brain working overtime, I longed to be lulled into the softness and warmth of skin and waves and breath. And as quickly as those tiny stones were pulled out, they were tucked away, into their dark places, and as I opened my lids, the harsh light of my day would sting my eyes and for now, flood the oasis of beach and bushwillows.

One Last Dance

It was a night of full moon and blankets of snow. Past midnight, I looked outside onto the landscape bathed in moonlight and remembered how John loved these nights. Full moonlight would cast a bluish tint across an otherwise white landscape, a dreamscape of sorts, otherworldly, of the moon and stars, foreign, hushed, fleeting. And as I looked across the vastness of blue and shadow, I quietly sang to myself, "and dance by the light of the moon..." and wondered if when I turned around John would suddenly appear, out in the snow, beneath the full moon and bare birches, dancing, twirling, making snow angels beneath the stars. I hoped so. In my minds eye I could see it clearly. And the next morning when I awoke, I strained my neck to look out across the deep cover of snow, looking for footprints or angel wings beneath the crabapples. The snow pack was unblemished, but maybe his feather-light wings had not touched the ground.

Authors Website: https://www.facebook.com/jbaumgartnerauthorpage/

Authors Bio:

Jan Baumgartner is the author of the memoir, Moonlight in the Desert of Left Behind. She was born near San Francisco, California, and for years lived on the coast of Maine. She is a writer and creative content book editor. She's worked as a grant writer for the non-profit sector in the fields of academia, AIDS, and wildlife conservation for NGO's in the U.S. and Africa, comedy writer for live performance at Herbst Theater in S.F., and as a travel writer for The New York Times. Her work has been published online and in print, both nationally and abroad, ranging in such diverse topics as wildlife and nature, travel, humor/satire, Africa, and essays about her experience as a full time caregiver for her terminally ill husband. Her travel articles on Mexico have been widely published; two are included in anthologies. Since her husband's death", and following her passion for world travel, she has made solo trips to France, Italy, Mexico, the Bahamas, Turkey, Kenya and South Africa. She makes her home in San Miguel de Allende, Mexico