ALS and what it really means

Margot Zemach, Heidi's mother., and children's book illustrator/author.

Margot Zemach, Heidi’s mother., and children’s book illustrator/author.

When my son Gabe started laughing at his phone, and explained that he had dumped a cold bucket of water over his head and called out his college buddies to take the A.L.S. challenge, I didn’t know what to think. What does dumping ice-water on your head have to do with the horrifying experience that my poor mother went through, and that my sisters and I stood by helplessly and witnessed?

Later Gabe asked, “Was that was your Mom had?” Of course I forgave his ignorance, and that of the hundreds of  other young people who are posting their antics on social media and who have taken the ice-bucket challenge without having a clue of what this rare progressive motor-neuron disease is. I also had failed to tell Gabriel or his sister Hannah about our family’s experience with Amytrophic Lateral Sclerosis, or “Lou Gehrigs” because it is so very depressing and hopeless an experience, and because sometimes it runs in families. The only exception I know on the positive side is the baseball star Lou Gehrig who proclaimed himself “the luckiest man alive” in 1939 to his adoring fans when he explained why he was abruptly retiring from baseball; and the famed English theoretical physicist and cosmologist Stephen Hawking, who may have a slow progressing variety of ALS, and who somehow managed to live into his 70s and continue his important work while severely paralyzed.

Well, since my son asked the question, and so many other young people may for once be paying attention through this attention-grabbing social media challenge—I’ll tell you something: A.L.S. is probably one of the scariest diseases out there. Pink ribbons and smiley bears, and moving survivor testimonials just don’t happen when you get something like ALS. It’s a disease that progresses through your body, sometimes slowly, sometimes quickly, weakening the muscles of your limbs, your hands and feet, causing painful twitches and cramps, and atrophying and hardening them. The effect is you are less able to stand, walk or sit up, hold onto things, eventually even denying your ability to talk, chew, swallow, or breathe on your own. Sometimes it can bring about dementia, but more frequently, the person’s mind is intact as they watch their body degenerate. Diagnosis is difficult, and misdiagnosis is common. That’s what my mother had.

At only 57, this fiercely independent artist, and capable mother of four had to suffer the awful humiliation of using a wheelchair and working from a hospital bed we’d brought into her room. She had to call her daughters for help with the toilet, with bathing, pouring coffee, and preparing her food. She’d not come downstairs, nor been out in the sunshine for many months, rejecting our offers to carry her down. Nor did she let friends or even paid caretakers visit her, and try to help out because she didn’t want them to see her in her condition or pity her. She never returned to her physician or neurologist once they’d told her that the only thing they could really do for her was document her rate of decline.



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When they carried my mother’s body down the narrow stairway of house, and into the morticians van, May 21st, 1989, she weighed very little. Her body was emaciated and dehydrated. Her hands were beginning to look like claws. On the day she died, this talented, prolific American children’s book illustrator couldn’t finish her last book. She had lost the ability to hold and control her own paintbrush. The only mercy that my mother had, was the  ability to take matters into her own hands, to write farewell letters to be given to her friends, to make out her will, give away some of her prized processions, and call life quits on her own terms before she became totally helpless and hospitalized, kept alive through breathing machines and tubes. She took her life with some whisky and an overdose of pills. The sadness is, she would never get to meet most of her grandchildren, or my husband and my two younger sisters’ husbands, or attend our weddings or births. She would never know that my sisters and I would eventually create our own families and build careers. We would never get to ask a parent about our life choices, or have their help raising children, as our father also had died young. Our children would never get to know their grandparents.

Picture from the book Hush Little Baby, illustrated by Margot Zemach.

Picture from the book Hush Little Baby, illustrated by Margot Zemach.

That sunny June 1989 afternoon, my three sisters and I drove to Muir Woods in Northern California. We slipped off the public path to the most beautiful hidden place among the trees and near a stream, scenery our mother would love to have drawn. We scattered handfuls of her ashes among the roots of tall old-growth redwood trees that had existed hundreds, perhaps over a thousand years. We sang songs that we had used to sing as a family to help us survive other difficult times. We toasted our mother’s beautiful life with wine she loved, and thought privately about what she had meant to us. We were all in awe of the way she had lived, what she had been capable of accomplishing while raising four daughters practically on her own, and of the brave, determined way that she had chosen to leave the world on her own terms. We were unsure of how we could survive yet another week, let alone the rest of our lives without her. And ever since, some of us have lived in silent fear of the specter of the awful disease that sometimes runs in families. So toss your ice water, and laugh at one another’s amusing reaction to its coldness. Donate to the ALS Society, and spread a message of awareness of this rare, under-unacknowledged disease. But also understand what the disease is like. Have compassion for those few who have it, and their families. And please don’t block potentially promising stem cell research that may one day help treat or cure the disease, because one day you, or a loved one may find yourselves in the same situation.

(Note: Heidi’s mother, Margot Zemach illustrated (and occasionally authored) more than 40 children’s books between 1957-1989. She won the Caldecott Award in 1974 for Duffy and the Devil, and was twice nominated for the Hans Christian Anderson Medal, the most prestigious international award for illustration. Heidi’s sisters are Kaethe Zemach-Bersin, Rachel Zemach-Silva, and Rebecca Zemach-Lawler.)

2 Comments

  1. Karma Hibbetts says:

    Touching, moving and emotional. Thank you so very much for sharing these intimate details of what ALS means to those diagnosed and their families.

  2. kaylenejohnson says:

    You have inherited your mother’s ability to convey beauty, with your paints being the medium of words. This is a story not only about ALS, but about the strength of family and the love between a mother and her daughters who were orphaned too soon by this terrible disease. Your words show us the resoluteness of her character and the depth of your compassion. Thank you for a moving tribute.

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