Written on 8/18/14
No one has nominated me for the ALS ice bucket challenge. I’ve been watching the videos in my Facebook feed for the past week wondering with equal parts hope and dread if I’ll be tagged. I’ve seen neighbors and friends participate with varying degrees of enthusiasm and frigidity. You slackers know what I’m saying. It’s an ice bucket challenge people, not a cold shower. The Kennedys, Bill Gates, Keith Urban, Justin Bieber and Jimmy Fallon have gotten in on the fun. If the Kardashians are involved, what about me? For those of you questioning whether this is just another way for attention seekers to get their two minutes of Facebook fame, you needn’t worry. The ALS Association reported today that it has received $15.6 million in donations in the past three weeks (compared to $1.8 million during the same time period last year). Shiver on, people, shiver on.
Still, I was feeling a little like the kid who gets picked last for kickball teams at recess.
But then I realized, it’s ok. I’m already aware. I got my ALS education twenty years ago.
In a world where nothing’s real unless it’s on the Internet, my grandmother barely existed. My search only turned up two entries for the woman who helped shape my life. Google will tell anyone who cares to look that Dorothy Corneal was born on October 1, 1921 and died seventy-three years later on December 20, 1994. Google also knows that she became a licensed practical nurse in 1980. Lost are her maiden name (McCann), her mother’s early death, and her father’s career as an art teacher. You can’t find out that she was a widow who raised five sons, remarried and divorced twice, doted on her grandchildren, wore lime green bathing suits, made mediocre banana bread and loved ginger tabby cats. Strangers will never know that she honeymooned at a cabin in the Poconos that my grandfather and great uncles built with stolen materials where she brushed her teeth at an outdoor stone table with water drawn from the nearby spring. No one will discover that she drove my brother and me to the beach every summer in a blue Nissan station wagon with the back seats folded down or that we ate homemade tuna fish sandwiches and pretzels at the Howard Johnson’s on the New Jersey turnpike to break up the five-hour trip. There is no record of the diamond studs she bought for herself late in life because no one had ever bought her a pair. Stripped from her history is any mention of her vivacity, her energy, her fierce devotion to the people she loved, her stubbornness or her need to control everything and everyone around her.
If the Internet deprives the masses of anything other than the bare facts of my grandmother’s life, it also hides from them the process of her death. She died relatively quickly from ALS, which is to say, not very quickly at all. We took her to doctor after doctor, hoping for answers. She suffered on long car trips, embarrassed that I had to help her to the bathroom and humiliated when we didn’t make it in time. Her once steady hands and legs started to fail, and within a year, the woman who had claimed independence from widowhood was confined to her bed in a nursing home. Her voice thickened and slowed as she lost control of her muscles. She grew frustrated when we couldn’t understand her. Knowing how little time she had left, she struggled to mete out admonitions and praise and advice. Her mind was as electric as ever, even as her tongue refused to bend to her will. We removed her rings when her fingers swelled and watched her hands claw in on themselves. The nurses taught us to massage lotion into joints to ease the ache that settled into now immobile body parts. Her skin was fragile – paper thin and translucent. She was becoming simultaneously ethereal and earthbound. She would never make another loaf of banana bread or drive a car or brush her own teeth. The ocean was relegated to memory.
My uncle brought sweets to the nurses’ station – sacrificial offerings of food to ensure my grandmother’s bell would be answered quickly and kindly. My father sat by her bed going through family pictures, hoping that she could identify the somber faces in the faded images. She was the last of her generation – we had no one else to turn to for the oral history of those who came before us. I combed her hair and plucked hairs from her chin – her vanity intact even as her face slackened and drooped. There was nothing we could do, so we floundered in the inconsequential.
Then she had had enough. She mustered what little language was left to her to ask her doctor to end her life. She was blunt. So was he. They found a middle ground. She signed a document refusing food and water. She received a morphine drip to render her unconscious. And then we waited. We hovered. We gently stroked her lips with lemon-scented glycerin swabs. The process had dignity, but it wasn’t dignified. One night, assured by the nurses that she would still be there in the morning, we all went home. The house was decorated for Christmas, and we kept the tree lights on when we went to bed as a talisman against the dark. When my father woke me at 2 a.m., it was to tell me she was gone.
At my grandmother’s bedside, someone removed her diamond earrings and handed them to me. I wore them at my wedding and I’m wearing them now. Which, really, is all the awareness I need. Every time I put them on, I am reminded of the ravages and brutality of ALS. And, miraculously, every time I see another ice bucket video, I hope that somewhere out there, there’s a cure.
For information about ALS, the ice bucket challenge, or how to donate to find a cure, please go to http://www.alsa.org/donate/
No one has nominated me for the ALS ice bucket challenge. I’ve been watching the videos in my Facebook feed for the past week wondering with equal parts hope and dread if I’ll be tagged. I’ve seen neighbors and friends participate with varying degrees of enthusiasm and frigidity. You slackers know what I’m saying. It’s