There But For The Grace of God

The phone rings and you don’t know if it’s the phone or the new, beeping pill dispenser your husband bought so he could leave you alone in the house for long stretches of time.  Before that, you were in charge of knowing which gaily colored pill was which and when to take the Rasagiline, or the Levodopa, the Azilect, the Sinemet or the anti-depressant, hoping the color-coded remedies might stop the slow and steady march of Parkinson’s Disease.

From the outside, I am helpless. I don’t know how you keep it all straight.  If only yours was the variation of Parkinson’s that only affects coordination and calms the tremors. That would have been a gift compared with what you got — a version that causes a relentless creep of dementia, like the hot lava flow that devours entire villages in the horror movies. You are slowly losing your mind, clinging to your grip on the day-to-day, but mostly reverting to what has come before in your life, grasping at memories of our growing-up years like they were yesterday, imagining that the eight of us are all crowded into the old Pontiac ‘woody’ station wagon to go to the drive-in, or that our youngest brother Michael is still alive, or that we still live in the old house on Thackeray Road, or that Mother and Dad are in the next room. They are not. But there are others too, you tell me. There’s a baby sleeping in a crib, who needs its diapers changed. There’s a little boy standing in your driveway, or a bunch of teenagers goofing off in the backyard.  You are constantly seeing the babies and children you were never able to have — the only one of the six of us who was unable to conceive – a particularly tough dose in a baby-centric family.  But the truth is, because of that, you were able to dote on all the children precisely because you were not preoccupied with your own.  You so enjoyed the role of the favorite auntie. Everyone looked forward to your Christmas brunch.  The invitation was for kids only.  None of us parents were allowed. Every year you would pick a theme and buy a special party favor for each child.  It was the event of the year.  The oldest of ‘the kids’ are now in their mid-fifties, but they’ve never forgotten The Brunch.

More and more, our phone calls have become strange and confusing.  You were a Latin teacher, a grammarian, a meticulous explainer of the ablative absolute or the anomalies of fifth declension or the use of the vocative case.  After many years of teaching, you went into real estate sales, where you were consumed by a business of money and appearances, growing a customer base, showing houses at a moment’s notice, even if it meant getting up from the middle of a dinner party.  And you were good at it!  You dressed as though your life depended on it, which it did.

So now, your telephone chat has become a strange invention of half-sentences and invented words — all with the correct, assured tone of voice of the salesman and the etymological know-how of the Latin teacher. It would be….grubble stang and so forth…so interesting, for instance…if the house weren’t…sub rosa…it’s only two doors down, but it’s the same…conglomeration…

And why should we be surprised when, before you can go out for a little walk, you decide to line up all your jewelry on your bed, to take inventory, to consider which pair of large sterling silver earrings you might choose to match the wilted black fleece sweatsuit you now wear every day, while the bright quilted jackets, elegant slips of silk blouses and tasteful black slacks lie fallow in your closet.

And the pills keep changing, this one combatting the decline of motor function, that one batting back dementia, a Hobson’s choice between two distasteful outcomes, as you sail haltingly between the Scylla and Charybdis of a turbulent disease.  Funny, that on any given day, you still might remember those two treacherous cliffs described in Virgil’s Aeneid, a treasure shared by several of us in our classics-crazy household!

You were always the fancy one in the family.  I envied your pink flowery canopy bed and the delicate white secretary desk in the corner, where you wrote neatly in little notebooks, in a handwriting that was so elegant people would ask you to do their wedding invitations.  I was only four years younger than you and was probably in line for the canopy and the desk, but the world seemed to shift in those four years — from stockings, silk dresses and patent leather pocketbooks to torn jeans and bandanas.

Your stories and concerns are often filled now with paranoia and apprehensions, suspicions or fears of criticism. I try to untangle what is disease and what is part of your DNA, from our family that seemed full of laughter, happiness and success, but which also hid a raw underbelly of competition, fear of failure and thin skin.

You are the canary-in-the-coal mine of the family now, laying bare all of our inner faults — the limitations and neuroses that the rest of us are still capable of disguising with the quick two-step of Irish wit.

Kate Sullivan likes to play around with words, music and pictures. She is the author/illustrator of two children’s books, On Linden Square and What Do You Hear? A linguist by training, she is also an award-winning composer and performer. Her one-woman theatre piece LENYA! won the Independent Reviewers of New England prize and her Fugitum Est was premiered by The Kremlin Chamber Orchestra at Carnegie Hall. She has given many solo performances, singing, playing the piano, guitar or, on special occasions, the musical saw.

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