The story of my life
Syllable by syllable
From the hospital:
At first I said Oy vey I’m going to die!
I’m going to live
The first time I stepped foot into Marcie’s world, it was like finding myself in the classic nightmare of paralysis: the dreamer needs urgently to escape but suddenly can’t move and can’t make a sound.
It was a friend of my daughters who had suggested the visit – she thought this was someone I’d like to know, which turned out to be an understatement – but visiting a sick person in a Catholic hospice…it wasn’t in my comfort zone. (Walking by sometimes on my way to the Kotel, I’d been surprised to see observant Jewish women going in through the cathedral-like entrance, and wondered whom they could possibly be visiting. Little did I know that half the patients in there are Jewish.)
By the time I finally passed under that archway myself, months had gone by.
Although her body is inert and immobile, she is fully conscious and "herself," mentally and emotionally.
A nun directed me to Room 25. Averting my eyes from the curled-up human form on the bed to my right – an ancient-looking woman of indeterminate age, her dark hole of a mouth fallen open – I pulled up a chair by the bed in the opposite corner, alongside another visitor. Emuna Witt was reading aloud the morning blessings, to which the young woman who lay next to her, flat on her back, attached to various tubes and medical paraphernalia, was silently giving slight nods to signal Amen.
So this was Marcie Alter. She greeted me with her eyes.
A bunch of stuffed animals lay in a heap at the foot of her bed. Taped up all around the wall were drawings and greetings from friends and family, handwritten quotations from Torah, and photographs of smiling faces.
Little by little in the coming weeks, by pointing to letters of the alphabet, Marcie would answer my questions about the events which had brought her here. A single mother and graphic artist in her thirties, she had made aliyah in 2003. In 2006, she was left paralyzed from the neck down after failed surgery for a brain aneurism. Although her body is inert and immobile, she is fully conscious and "herself," mentally and emotionally. She retains slight spastic-looking movement in her forearms and four of her fingers, and can shake and nod her head. Aside from this (and I explicitly mention the following because even in her presence, it takes visitors a while to grasp the extent of her disability) she is unable to eat, drink, speak, move her legs or feet, or use her hands. For example, she can’t hold a book or turn a page, or use a writing utensil. If she has an itch, she can’t scratch it (nor tell anyone else to do so). If, when being pushed in her wheelchair, one of her feet happens to fall out of position and drag on the ground as the chair moves forward, she can’t lift it. When her scarf slips down over her eyes, she can’t adjust it. She breathes through a surgically created hole in her throat; when the opening gets clogged, she must wait for someone to clear away the mucous. Since her vocal chords and facial muscles are included in the general paralysis, she can’t cry, or laugh.
Her lips sometimes press together and lengthen slightly; those who know her recognize that at these moments, she’s smiling.
It must have been about 20 years ago that The Jerusalem Post carried a report on survivors of an earthquake in Armenia. Pinned under the ruins of his house in total darkness, inaudible to rescuers, one man couldn’t move, if I recall correctly, for ten days. A shattered water pipe happened to be leaking drops of water onto his face, some of which he was able to catch by leaving his mouth open, which saved his life. I remember how trying momentarily to imagine myself in such a situation almost made me want to scream, while here before me was a fully sentient person who for four years had been silent, pinned down inside the ruins of her body.
Later that morning, Emuna introduced me to the handmade alphabet board that Marcie uses to converse. As someone holds the rectangular piece of cardboard firmly before her, she spells out words by pointing in her distinctively shaky manner to the letters, one by one. The ABCs are written out in capitals, with black magic marker, and below them appear the numbers from zero to 10. Below that are the words MOM, BEN, BROTHER, THE, AND, END (for end of word) and THANK YOU.
To sit there next to Marcie was to suddenly confront my own life’s fabulous embarrassment of riches.
Two of the photos on the wall caught my attention – one of a curly-haired, laughing young man and the other, of a woman in her twenties, in a striped maternity dress, gazing clear-eyed and steadfast into the camera. “Is that your son?” I asked her. Marcie nodded, indicated that she wanted the alphabet board, and pointed to “BEN.” “And that one? In the striped dress…? Is that…?”
She nodded emphatically.
Her eyes smiled
To sit there next to Marcie was to suddenly confront my own life’s fabulous embarrassment of riches, and grand panoply of complaints, and to feel obscenely undeserving of my own good fortune.
A few months went by and it was the fourth night of Chanukah. For various reasons I was home alone, and the loneliness of lighting the candles by myself was creeping up on me. I prepared the menorah, lackadaisically, catching sight of my dark reflection in the glass of the window as the four flames flickered. In all the happy-looking windows of the building across from me, rows of little yellow lights were burning.
When the candles went out after half an hour, my heart was cast abruptly adrift. What should I do with the long winter evening ahead of me, out on that frightening, empty sea?
The lights along the second-floor hallways of the hospice were already dimmed for the night when I arrived. I'd never been here at night before, and as usual, tried not to glance intrusively into the rooms as I walked by fast on my way to Marcie's room.
At the door, I was unsure if she was still awake. It was only 8:00, but here, too, the overhead lights had been turned off. I took a few steps inside. In the semi-darkness she lifted a forearm and waved it jerkily up and down.
I sat down by the bed and told her how I was doing – not great – and then, as usual when telling her about any of my own difficulties in life, felt ridiculously, reprehensibly petty and spoiled. “Marcie, you know sometimes when I’m walking down the street I think to myself, what would Marcie feel if she were doing this, and for a few moments, I exult in being able to walk, and talk, and move. I exult intensely. But of course my appreciation doesn’t last long, and soon I’m taking it all for granted again. I know that shouldn’t surprise me, but I keep expecting that having seen some of what you go through every hour – because it’s so much more difficult, and qualitatively different from anything in my own life – that it will change my perspective once and for all and I’ll just be grateful from then on. But that’s not what happens. I still suffer over whatever I suffer. Even though I realize it’s so slight in the grand scheme of things.”
She gestured towards the alphabet board and I held it for her as she spelled out: everyone has his pekele [baggage].
“Don’t you feel annoyed at people, that they don’t appreciate what they have?”
She shook her head, no. Me too
I didn’t understand.
Wish I appreciated more
“You mean before you got ill?”
“How do you get through the day, Marcie? You must go through a lot of – you know that phrase? – ‘long dark night of the soul.’ Right?"
A wry expression in her eyes said, "You got it." She pointed again to the letters. Used to pray to die in my sleep
“You used to? You mean you don’t anymore?”
She shook her head no.
She rolled her eyes upward and lifted a forearm, as if to say, who knows? Then she spelled: Today one of my lows a new nurse
"She didn’t know how to do things?"
It hurt I was angry.
“Marcie, I just can’t imagine such a thing. And things like that must happen all the time. When I first met you, I thought you must be different from other people, and that accounted for your ability to bear it.”
She narrowed her eyes in question, not sure what I was getting at.
"I try not to think about what I am missing."
"Now I know you’re just like all of us. So what I want to know is, really, how you manage."
I try not to think about what I am missing.
These words struck me as if she’d just tossed an enormous key my way. All I had to do now, supposedly, was turn the key. But where was the lock, or even the door? "You don’t think about what you're missing…that's amazing. That’s what people can’t stop thinking about. But you're missing…everything, at least the way most of us would see it. So what do you think about? A stupid question, I know, but really, what do you think about?"
She jerkily lifted a forearm, pointing upwards.
"You know, my son-in-law told me that when you visit someone in a hospital, according to Jewish law one is not to stand higher than the person's head, because the Shechina (Divine Presence) is over the bed of a sick person."
I feel it
“You do, Marcie, really?””
I don’t feel alone
On the table at the foot of Marcie's bed, there was a menorah, unlit. "Marcie, shall I light the Chanukah lights?"
She nodded, so I got a match from the nurses' office. For a while we watched the candles together, and in some inner corner of my mind, a shy little thought flickered: This is happiness.
This article is an excerpt from an article that appeared originally in Ami Magazine.