Thank you, Herr Beethoven

The effects of music on a Parkinson's patient have long been known but hardly understood. Many are the stories of severely disabled people suddenly dancing fluidly when they can barely walk. Music has been known to unlock the minds of stroke victims, indeed the sufferers of all kinds of ailments. Music reaches inside us, lifts us up, evokes strong emotions and reactions we might not have been feeling before that moment of hearing a certain tune. Memory too is closely linked to music. How many times have we heard a song that hurls us right back to the time we first heard it or experienced something significant?

When I am frustrated and in need of escape but cannot leave the house, I simply pull out my ipod, plug myself into my earbuds and jack up the music. Usually it is loud, testosterone-driven music that I favour when I am in this mood. I sing and dance all by myself. If truth be known, it is the only time I dance with abandon. I am otherwise shy and would never do so in public except, in my distant past, when I was under the influence of intoxicants, long since abandoned. Lately I have latched on to a newly discovered (for me) group called the Headstones, appropriate given the topic of my last post ("Good Grief"). Their music thrills me with the high I need.

Dinner time has been very frustrating these days. It is the one meal everyday when we sit down together. The other meals I eat well ahead of Michael as my day usually starts much earlier than his but I do try to make of point of breaking bread together at least once a day. It is a meal I do not really enjoy: it is deathly quiet unless there is choking or other drama to deal with which only leaves me wishing I'd eaten alone and uninterrupted. To ease the loneliness - always more pronounced than when I eat on my own - I usually immerse myself in a puzzle, a newspaper article or the computer. It is a frantic activity, not calming, as I try to concentrate in an impossible environment for such endeavours, my body poised to jump for any new calamity. The problem with this strategy too is that Michael likes to mimic this behaviour so he spreads out a page of the paper in front of him then stares at it. I know he isn't reading anything - his eyes never move - but he can become so fixated he will not eat. Or he tries to shuffle the pages which end up on the floor or in his food and generally a big mess. Then the preoccupation becomes the retrieval of all the paper and an inevitable slump to the floor.  Of course, all of this could just be a clever ploy to avoid eating whatever distasteful food I've served for his dinner.

With all that in mind, I have decided that a change is required - for both of us. The past two nights I have laid the table as usual with the cloth napkins, even flowers from the garden. Last night I rustled up a what's-left-in-the-fridge quiche which was a reasonable success for Michael. We clinked our glasses -water and apple juice - and made an event of it, reminiscent of the many fine meals we ate together in the past.

But the major change was ridding the table of the distracting newspaper and keeping the computer firmly shut. To ease the quiet and the loneliness I put on a classical cd from our collection. I've tried more modern music at mealtime but it only unsettles me and feeds my restlessness. Last night it was a Beethoven compilation I haven't listened to in years. The night before, Vivaldi. The effect for me was an instant relaxation of my usual mealtime jitters. I found myself eating more slowly and listening intently to the piano trills or the violin crescendos, anticipating the notes that used to be so familiar to me. It was Michael's reaction, however, that captivated me. He has never really been a fan of classical music so it was fascinating to observe that, not only did he eat with more focus and fluidity, but at one point I looked up and saw him conducting with his fork, obviously enjoying the music.

I've dug out all our classical cds and will play a new one each night that we eat without company. Tomorrow night Mr. Smetana will pay us a visit. Why didn't I think of this sooner?

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“We, verily, have made music as a ladder for your souls…” –Abdu’l-Baha

*Portrait of Ludvig van Beethoven, Joseph Karl Stieler, 1819 or 1820

Good Grief

Every morning she looks down upon his sleeping face and wonders what the day will bring. Will calmness prevail? Will he develop some odd notion that must be relentlessly pursued without really knowing what it is, while she hovers over him trying to decipher the puzzle, trying to keep him from harm, trying to divert him if necessary? Will he exhibit a new and frightening symptom leaving her to guess whether medical assistance is required, whether to rush into action? Will the fact that she cannot waken him from a troubling slumber and erratic breathing mean something more than just another oddity of his disease?

These are concerns that sit upon her shoulders every moment of her day. There is little escape except for the few hours a week that she can leave him in the care of another. But even that means being tied to the cell phone just in case, being poised at all times to rush home.

She has hardened herself to the cruelty of the endless grief. The rare moments of clarity where he displays his old humour or an awareness of his reality can be a delight but always leave her scarred with another deep gash of sadness as she is reminded of the man she has lost. The grief ebbs and flows, now usually without tears, just a dull ache that grips the heart. To be otherwise would be impossible to bear and would render anyone incapable of functioning. The cleansing outpouring that accompanies a true death cannot be allowed to prevail. This death goes on and on and on. She has suffered the loss of her husband but cannot wear the widow's weeds.

The funeral of a friend's father summoned her. Because of her restrictions she could not attend the event but could at least pass by and express her condolences, hug this friend and and her family. She stood for a moment, hand on the casket, and uttered a brief prayer for the man whose life she hardly knew. It was a simple unspecific prayer, one to accompany him on his new journey. She felt dry-eyed.

As it happened, her own parents were buried nearby so she slipped away before the ceremony to pay them a brief visit before rushing back to her home of the living dead. Their grave was a mere pathway away, through a serene garden of lush plants. Gardeners mowed and trimmed away as she rushed past them. She felt a sudden urgency and nearly ran the few meters to the grave. The tears began and by the time she had reached the spot, the sobs were wracking her frame and forced her to her knees. The outpouring lasted only a few seconds.

She stood and walked slowly and now calmly back to her car, the ache relieved for the time being.


* Crying Stone, Luba Zukowa in Poznan, Park Cytadela.

Home

You sat with your head thrown back, wheezing, snoring, mouth and eyes wide open. I had assumed my usual prone position on the couch next to you, my legs thrown over your lap. Your warm hand rested on my belly, twitching occasionally in your half sleep. A Neil Young documentary shrilled in the background on this cold, rainy June afternoon. I wanted to turn him off; the sound was grating to my ears but you had obviously been enjoying the music before you fell into your semi-conscious state. It used to be frightening to witness these episodes of withdrawal of consciousness but I am used to them now.

I covered your hand with my own and ran my fingers up and down yours. It is one part of your body that hasn't changed in all the years I've known you, unlike my own hands which have swelled, bent and stiffened with arthritis. Ugly hands. Yours remain strong despite the weaknesses elsewhere in your body. I can still count on you to open a stubborn jar when my hands just refuse to work.

My wandering fingers stopped at your ring finger. Mysteriously your wedding band has been replaced with an ancient high school ring, a big heavy thing that looks as though it could do serious damage to someone's face if you wanted to. I sat up to inspect your right hand. There was the gold band along with your iron engineering ring presented to you upon graduation so many years ago. Was there any reason for the switch, I wondered? No point trying to overthink this, my quick conclusion.

These rings represent significant events in your life: your happy high school experience in the United States, stationed in Norfolk, Virginia where fine friends were made and are still present in your life, albeit remotely; your struggle through university and finally getting that coveted degree, a goal that had been more your parents' than your own; marriage and children - I hope a happy fulfilling experience for you if somewhat stressful and busy with four boisterous children. Of our thirty-four years together you have been sick now for over twenty. 

You have slipped into the distant past, your memories of those times still sharp and clear when you can articulate them. Your present is a return to childlike things, your needs must be guessed and intuited. Your relationship to me is like that of an infant to his mother, your need for me to be near growing day by day.

This week you were twice troubled and confused by my absence. Could it be the massive changes I have brought about in our basement, converting a grey, dingy space into a miraculous realm of light, order and joy? My heart leaps with happiness whenever I descend the stairs but for you it is all confusion. Your work bench is gone. The clutter has been swept away. Your unused sports gear has been greatly reduced. My way of creating change when static life is our reality.

You wandered downstairs one day by yourself while I was out, leaving your caregiver upstairs. The workmen, my friends, reported that you mumbled you needed to go home. You needed me. I was out for a couple of hours but you had forgotten. You had also forgotten about your home - our home - a place of safety and calm for you. Your behaviour reminded me of your singular goal of returning home, of finding me whenever you were hospitalized, in a foreign environment. When thwarted you would become violent, prompting staff always to summon me to bring calm.

Another day I came home to an empty house, a rare treat. Two sets of shoes were gone so I assumed you were both out in the yard. Confident you were safe, I busied myself in the basement arranging things in the new spaces. Half an hour later you returned. You had apparently bolted down the road to a neighbour's house then to another in search of me, F. valiantly following you wherever you wanted to go. She reported that you were remarkably  focused and stable, hardly falling until you reached home and saw that I had returned. Your occasional sparks of grit and determination are awe-inspiring, a mystery.

I feel as though an umbilical cord now joins us. It seems as though our house no longer fully provides you with the safety and security you so desperately need. I am becoming your only home.

*The Babe in the Womb, Leonardo da Vinci, 1511