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In the Blink of an Eye

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~ 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.

Life, now

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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.


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"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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A native Californian, Jan Baumgartner is a writer and book editor. After many years along the coast of Maine, she now lives full time in San Miguel de Allende, Mexico. She's recently finished editing two books; one, a memoir for a non-profit in (more...)

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omg, thank you for this BEAUTIFUL piece! (My ratin... by Meryl Ann Butler on Thursday, Jun 26, 2008 at 12:38:48 PM
Meryl Ann.  And what I have found from talkin... by Jan Baumgartner on Thursday, Jun 26, 2008 at 12:58:47 PM
once participated in the discussion on what type o... by Mark Sashine on Thursday, Jun 26, 2008 at 2:53:22 PM
I would agree.  To know that the person you l... by Jan Baumgartner on Thursday, Jun 26, 2008 at 3:07:29 PM
your husband was thinking - how fortunate he was t... by Mr M on Thursday, Jun 26, 2008 at 8:17:01 PM
thank you.   Every day, he would thank m... by Jan Baumgartner on Thursday, Jun 26, 2008 at 8:27:52 PM felt cathartic.  It said so much in so ... by Richard Volaar on Thursday, Jun 26, 2008 at 8:34:49 PM
and thank you.  There's so much we don... by Jan Baumgartner on Thursday, Jun 26, 2008 at 9:47:23 PM
     Boy, you are such a wonde... by mikel paul on Thursday, Jun 26, 2008 at 10:03:52 PM
and grateful.  It fills me with such hope whe... by Jan Baumgartner on Thursday, Jun 26, 2008 at 10:12:07 PM
Clearly John has not died a spiritual death with y... by Georgianne Nienaber on Friday, Jun 27, 2008 at 7:43:37 AM
someone, tell an agent, an acquisitions editor to ... by Rob Kall on Friday, Jun 27, 2008 at 7:45:31 AM
Beautiful, deep piece; I am not only personally an... by francine on Friday, Jun 27, 2008 at 7:48:14 AM
thank you for your thoughts and comments.  Bo... by Jan Baumgartner on Friday, Jun 27, 2008 at 10:23:07 AM
Dear Jan, It always remains my desire to give goo... by Muhammad Khurshid on Friday, Jun 27, 2008 at 10:36:33 AM
Indeed, in terms of friendship, times of duress so... by francine on Sunday, Jun 29, 2008 at 6:43:47 AM