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I have been watching my mother die by inches for so long that sometimes I think the world is comprised of marks on a yardstick.

Here is the mark where she first felt a tingling & numbness. Here is the diagnosis of multiple sclerosis ten years and twenty doctors later.

Here is the mark where she refused to hold her first grandchild lest she drop him. Here is our last piece of sushi together, before the gruel that now makes her gag because the muscles of her throat are deteriorating.

Here is the day she called me to demand $5,000 in small bills “immediately” because the bed was leaking green phosphorescence & had to be replaced.

Here are her last steps.

Here is her final descent into a wheelchair.

And here is the mark where I finally stopped demanding she be herself, and began instead to love the stranger she’d become.

This is my mother, who marched in the streets against Hitler & Viet Nam, and who taught me that for every Fourth of July firework, there is a mushroom cloud called Hiroshima lurking in the background.

Here is the year we didn’t speak, too angry at each other to even attempt détente… and here is where we both decided there was more to us than mismatched opinions.

Here are the things I gave her – backstage late at night in the jazz clubs, funding to go back to school, season tickets for the opera.

And here are my own regrets – why didn’t I take her to Japan, why couldn’t I haul her chair around Macy’s one last time, why can I walk when she can’t.

I cling to the good I did, and agonize over the rest.

Here is the file where I keep what remains of her former self. Here is the will specifying what is left to each of us “so there’ll be no fighting”. Here is the living will I insisted she make, naming me medical executor and spelling out her fears. Here is my twelve-year-old’s memory of her saying “I would rather die than be disfigured,” and my own incomprehension – You would rather die than lose a breast? and her resolute “Yes! It’s my body, my choice.”

Here is the mark of my brother’s call last month; she’s in the hospital with some kind of fever, are massive antibiotics a heroic measure? Can we put her on a respirator? Does she care any more?

They always said I resembled my father – eyes, nose, hair – but as I watched my mother being washed one day, I suddenly realized that regardless of any cosmetics I’d inherited from him, my naked body was entirely hers. Flesh of my flesh, bone of my bone, the very shape of my hips belongs to her genes. Later that day I napped, and took comfort in the scent still coming from her sheets, the same smell as my childhood, bringing memories of safety & joy.

My mother has been dying so long that it has become easy to forget how much I miss her, to accept the daily frustrations as part of life. instead of ridiculous complications in a life already cut short. Here is a mark for the government man who arrives each year to verify she hasn’t been miraculously cured, isn’t just too lazy to work and cheating Medicare. Here is the day her weight dropped to 69 pounds and they still wouldn’t pay for Ensure. Here is the aide my mother insisted was drunk all the time, and the mark of Cain on my forehead for believing the nurse, who said my mother exaggerated.

Here is where the aide finally passed out on the floor, then assaulted the police who came to remove her. Here is the system that assumed my mother’s handicap had also made her stupid, years before the disease affected her brain.

And here, clearly marked, is the day she herself realized that it had affected her brain, that all backfire sounded like gunshots now, and even the children’s laughter made her think of Auschwitz. Here is Valium, here is Prozac, here is everything we’ve tried, to keep the door between what-is and what-is-feared closed.

And here is the stuff of my nightmares: she is assaulted as she lays helpless on the bed, strangers playing with her private parts while she, fearing worse punishments to come, dares not tell me.

Here is a mark where the most recent of my former friends said “I know I should visit, but it upsets me too much to see her like this.” Here are my memories of him sitting at our dinner table every week, eating my mother’s food, asking my mother’s advice. Here is my own impotent anger at a world where people care more for their own comfort than another’s solace.

I visit when I can, I play the clown, and she laughs as I describe my life and the world outside. We watch television together in silence; I make no demands on her other than that she eat. My mother, who ran funding drives for universities and obtained a masters in playwriting at 50, is content to live in a state of Zen-like simplicity, where all answers are reduced to Yes or No, and Maybe is two letters too long for comfort.

And I am grateful for what we have, for the two aides who care for her round-the-clock, forcing her out of bed each day when she cries to stay lying down, insisting she tell them the day and month, forcing her to interact with a world that’s turned its back, massaging arms that barely feel & legs that spasm and flail in some rude dance when the drugs aren’t enough.

We are lucky, I tell my brother, she can still speak a little, she can see, she can hear. Do you think I should smother her, I ask, she trusted me to make sure she wouldn’t suffer, do you think we are really lucky?

Here is the mark where I began to dream of her, the same one I always have now. In it she is walking toward me, over a field of green filled with chaotic wildflowers that embrace and enfold her as she moves. She is rushing to greet me, arms outstretched, legs whole. She feels every motion of the wind against her skin, and as I fall into her arms I am home again, and I am safe again, at last.

© Janis Ian; all rights reserved. You are welcome to share this, with attribution.

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