You Can’t Keep a Good Woman Down, or ALS vs the Indomitable Esther Lindwall

Merriam-Webster defines indomitable as “impossible to defeat or discourage.” The word entered English in the 1630s, when England itself was gearing up for civil war. It’s a negation of the the latin domitare, from domare, “to tame.” The “dom” root gives us lots of relations to tame, from domestic to domicile, but indomitable appears to be its sole negation.

This past Friday, I took the train from Penn Station to Albany, where my sister picked me up and skedaddled me from Rensselaer’s spaghetti streets to my father’s farm, in southwest Vermont. It was my third trip to the farm since Labor Day, but the first two had been designed purely around hiking and eating and drinking local beers, whereas this one was dedicated to mourning the passing and celebrating the life of my grandmother Ester, known to me as Mormor, who had passed away a few weeks prior.

In 1995, Ester was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, which you may know as the reason so many people were pouring ice water over themselves last summer. Unlike Lucius Lyons’, my grandmother’s diagnosis was spot-on. When her daughter married my father, in 1999, Ester was still independently mobile, though she could no longer dance, an activity she loved second only to gabbing. Over the next sixteen years, all of the activities she loved: the ability to walk, to pour a glass of wine, to stir a pot of swedish meatballs, ice a hot milk cake —  would be taken from her in fits and spurts.

ALS afflicts the body mercilessly, shutting down the motor neurons that normally serve as a conduit between brain and muscle, which causes massive atrophy and musculskeltal pain. Mormor — fairly petit to begin with— was smaller each time I saw her, her skin hung like sheets off her arms and her head appeared outsized atop an increasingly bobbly neck. In the beginning, she could still speak, though the words came out slowwwwly, and somewhat tinnily, as though through a transistor radio. Eventually, slow became a crawl became a valiant fight to get a single word out. To me, those words might be “Brady,” my husband, or “Brooklyn,” where I now live and where she worked as a nurse during the second world war. For all the unsaid words, she used her eyes and the occasional extension of her hand.

ALS afflicts the body but it spares the mind, and Mormor used hers to escape her increasingly cramped jail. She had a velcro memory and a deeply Swedish sense of humor (dopey-dark, with a subtle punch line). Her Lena and Ollie jokes were often sidelined by peals of laughter that her disease prolonged, and she saw, even, the Swedish humor in that — a disease that lets you start laughing but won’t let you stop.

There is no cure for ALS; its husking out of the body is, typically, fatal. Yet Mormor lived to be ninety-four, and the last twenty years of her life, the disease years, were spent, to the best of her ability, as she’d spent the first seventy four: making and maintaining friendships, keeping apprised of family goings-on, learning (she became, in her last years, a wicked cribbage player). At her funeral, the line of people who wanted to speak was a microcosm of the people she’d known through thick and thin: children and grandchildren, old friends and new.

ALS is cruel and vicious, but it couldn’t defeat the essence of my grandmother. Shortly before she died, one of the staff members at her hospice celebrated a birthday, and Mormor sang to her — four sentences of song, the words clear, from a woman who hadn’t sang in years.

You Can’t Keep a Good Woman Down, or ALS vs the Indomitable Esther Lindwall