One Winter Morning

I write this with my left hand in the blue, spiral bound notebook I used for a writing course in the fall of 2013.  

I am reading the remarkable “Fallen” by Kara Stanley in which Kara tells how her husband, Simon, wrote with his weak left hand as part of his recovery following a traumatic brain injury. For two weeks I have been close to finishing “Fallen” but find I can only handle a few pages at a time.  It is not a fault of Kara’s writing this slow reading. It is a beautiful book, honest and brave and it unravels me, again and again. It would have …before Parkinson’s disease, before Lewy-Body Dementia, but not like this. So much of Kara’s story strikes chords of memory, of loss, of fear and exhaustion, of family and friends that rise above and rise above again, of displacement, and of the search for what is home when the centre shifts.

This is good for my brain, I tell myself, this left-handed writing. I will write one page today and another tomorrow and the next day and the next. It is hard to hold on to my thoughts at this slow speed. Being forced to slow down is also, probably, good for my brain.

Outside the snow falls in straight lines, like white rain. I am glad for the snow. I hope enough falls to give work to the city snow removal crews who should by now have had a month on the plows and in the trucks. Revelstoke is beautiful in the snow. (It has taken me half an hour to write this much)  Steep metal roofs on century old houses shed the accumulation in rumbling whooshing drum rolls that punctuate our winter days. 

Enough has fallen that I will try out for the first time the tiny skis that clamp on to the front wheels of Lincoln’s wheelchair and hopefully allow us to get outside. A quarter inch of snow is enough to stop us literally in our tracks and I cannot bear the thought of him spending another winter confined to the cottage, without respite in the fresh air, without wind on his face or the opportunity to catch a glimpse of Mt. Cartier, a startling arrowhead of pristine white against the blue, blue sky. 

I sit here beside the tiny, potted fir that is my Christmas tree.  The gas fireplace is lit and chases the morning chill from the living room.  I am feeling rueful about a FaceBook post I made yesterday, a pouty whine.  I had returned with some excitement to a manuscript for a picture book on which I have been working for ages. I left it so much worse than I found it and did not walk or lift weights or practise yoga or cook anything healthy for the coming, busy week.  I was frustrated and feeling guilty about neglecting the work I do to manage my Parkinson’s and pissed about the necessity of paying constant attention to my Parkie-self and how I am doing with it. Friends responded with humour and encouragement. I wish I had not demanded that of them but am quite stuffed with gratitude for their goodness and their patience.

The mood passed overnight. I woke to read a few more pages of “Fallen” and am humbled, as I always am, by Kara and Simon’s grace and strength.  I wish I had better impulse control and want to blame my regrettable post on the medication I must take but, truthfully, it is not the meds but me, and I was ever thus.

I want to write about Lincoln’s laughter; that is the point of all these wandering words. I want to tell you how he has always been a quiet, almost silent chuckler…perhaps, like so many things about our relationship, to provide balance for my loud outbursts of cackling mirth. I want to tell you that he has, though, always been an easy smiler and, oh my goodness, the sweetness of his smile. It softens his craggy, lean features and brings such warmth to his brown eyes.  Despite his disease, he still smiles frequently. His caregivers work for that smile. It stops them in their tracks.

“That smile, Leslie!” they say.

I know. 

Sometimes there are tears in their eyes and I am reminded what hard jobs they do and what little time they have to just be present with the fragile souls for whom they care. They must feel very empty sometimes.  I am glad for Lincoln’s smile in their lives, too.

But Lincoln’s laughter is something more.  It has always been a rare occurrence and like all rare and lovely things, it is to be treasured. His laughter confirms for me what I sometimes struggle to believe, that there is a still an essential piece of him inside the frail old man who was once, such a short time ago, vigorous, and radiant, and irritating, and inspiring. He was, he is so beautiful to me.

He laughs most in the presence of our grandchildren. At ages 4, 3, and 2 they have no memory of him except as a resident in longterm care. They move through his space with the ease of familiarity. They adjust his footrest, push his chair, tuck the cloth beneath his chin to catch the drool. They show him their drawings, their Lego buildings and their stuffies. They tell him their stories.  He knows they are ours. They can be happily loud and that is when he laughs the hardest. His delight in their presence, his laughter, fills my leaking emotional bucket with a blessedness I do not take for granted.

Lincoln now must contend with huge physical startles. The literature terms them “myoclonic jerks”. The literature also says they present in late-stage Lewy-Body Dementia. The words unglue me. I know well where he was three years ago and I know well where he is today. “Late-stage” is a reality I think I have accepted and then I realize I have no idea what acceptance means.  Whatever it is, it does not deny the grief.

But Lincoln, when a seizure grips him, his arms and legs shoot out, his whole body lurches forward with such force, that were he not seatbelted in, he would be flung from his chair.  I lean over him, hug him, whisper reassurance and reposition his arms and legs,  more to comfort myself than to help him.  I fight tears and I inwardly rage that this, too, is his to bear. But he laughs. He laughs as if this betrayal of brain and body is just another enormous joke…the present version of tumbling over the handlebars of his bike or bungie-jumping naked from a bridge. 

His laughter lights up my dark places.

I will let you know how it goes with the skis.

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