Mincing Words

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Her words were the first to go, the initial loss of many losses, and now, as I clean out her home of 23 years, I find them everywhere. Words, phrases, sentences sometimes, occasionally short paragraphs, but mostly non sequiturs. Often requests or questions—“crush pills” or “bring wallet,” followed by stray comments: “too funny,” “not sure,” “had it once,” “see what you think.” Strings of words scrawled by weak, uncooperative fingers—you could flip the notepad pages and see her pristine, tight cursive becoming more and more unraveled and hard to read. Snippets of conversation left hither and yon—on notepads in her bedroom, on the backs of envelopes by the kitchen sink. Scribbled, untethered utterances, dangling participles, dangling modifiers that now leave dangling memories.

My mother’s trembly, slurred speech was the first clue of what was to come. Early on when she was becoming increasingly hard to understand during Sunday evening phone calls, we wondered if maybe she was having a second, or third, glass of wine in the evening. Her words on point and appropriate, only she could not articulate them, like Colin Firth with his mouth crammed full of marbles in The King’s Speech, ironically the last movie we ever went to see together. “Spasmodic dysphonia” was the otolaryngologist’s quick diagnosis. Think Katherine Hepburn’s gravelly warble. Nothing terribly serious, a little Botox (to the voice box) and things might get better and should not get much worse. If only he had been right.

When she went for the workup and evaluation before the Botox treatment, a neurologist suggested further testing, then several doctor visits, tests and weeks later, the diagnosis shifted from dysphonia to something more dys-everything. Amyotrophic lateral sclerosis—hard to wrap your tongue around even if your tongue and mouth work fine. ALS, Lou Gehrig’s disease—even harder to wrap your mind around. “What? ALS is when your legs fail, when you lose arm strength. That can’t be right—Mom’s fine, she’s strong, it’s just something with her voice.” Then we quickly learned the bleak statistics: ALS affects 30,000 Americans, about 5,000 diagnosed each year, 10 percent of whom present with loss of speech and swallowing. Ninety percent of them die within two to five years.