When my mother was 67, she lost her voice forever
When my mother was 67, she lost her voice forever – or did she?
My mother valued conversation. She loved getting people together to share perspectives on anything from the existence of God, to the ideas of George Bernard Shaw, to whether it was okay to kill of animals for food or sport.
Back when I was a teenager, she’d get me and my friends talking about social problems, about world politics, or about her favorite subject: moral dilemmas. She’d listen intently to whatever we said, and we loved it: we’d never been taken so seriously before.
When my sisters and I had children of our own, she took as much interest in them as she had in us. And they responded by wondering with her, about how sunsets are made, why people get sick, where insects go at night, and why rain can’t be stopped by waving a stick.
So when she was diagnosed with throat cancer and told that to slow its growth, her larynx must be removed, she faced the end of her preferred way of being with family and friends: in conversation.
At first, Mom wrote down whatever she wanted to say, on one of those “magic slates” that come with a plastic page to write on, lift to erase and then reuse. She found a Sesame Street one with Cookie Monster munching two cookies at once, their crumbs tumbling down the slate’s margins.
Young children liked the Cookie Monster, but they couldn’t read her words. And her conversation with adults was slowed to a boring pace by the write-and-read process. So at the urging of her doctor, she tried to master “esophageal speech,” achieved by swallowing and trapping air in the esophagus and forcing it out in a kind of burp that allows her words to come out and be heard.
Encouraged by her speech therapist, a charming Italian doctor who reminded her of her old Italian boyfriend, she gave it her best shot. But she couldn’t learn it well enough to do much more than swear, her frustration salved by her doctor admitting that he’d tried it himself and largely failed.
Yet she never lost her sense of humor.
I lived far away and wasn’t with her for most of her ordeal, but we exchanged letters weekly. During one hospital stay, she wrote: “I really don’t care what they take out – but if it’s my brain, I insist on all or none.” And then “The doctor’s been and gone, and there are to be also an epidemic of students. I do wish I had more elegant underwear.” As well as “I’m going to end up in a text book – whatever else they say about me I hope they mention the red hair.”
From rehab, she wrote, “I’ve been trying esophageal speech for days, saying short phrases. I’m absolutely hopeless. I handed Dr. S. a note saying I could get no sounds but hisses, wheezes and gulps for two days. I swore at myself, banged tables, stamped feet, then gave it one more try – and said every damn one!”
Her frustration was obvious: “God damn it, I terribly miss having conversations! I have no great motherly things to say, just long for the joy of exchanging fresh ideas to consider questions beyond mine.”
So she tried using an artificial larynx, a battery-powered device that when placed against her throat, emitted vibrations that “powered ” her speech in place of her missing larynx. Once she got the hang of it, she was able to produce clear sounds.
“I had an hour and a half conversation with Dr. S – I was manic, so happy after being dumb, in terms of exchanging thoughts and ideas, for the last six months.”
But her artificial larynx lacked an essential element: intonation. Often when she called a store or office, people would hang up on her, assuming that what sounded to them like squawking was just a joke. She wrote that “Just a few people understand me on the phone – and they are great guessers. My great thrill was when the bank VP understood me: before he confessed that his father used an artificial larynx, I was about to ask if I could adopt him.”
Her mechanical voice took getting used to even for family and friends. She wrote me that when she tried to use her new gadget to call her son-in-law, “He heard my little Minnie Mouse voice and got hysterical. ‘Marian: is your house on fire? Are you sick? Shall I come up right away?’ I squeaked back, ‘No No No goodbye.’”
Mom found ways to connect with kids who visited: she’d doodle on the piano, playing familiar songs like “Mary Had a Little Lamb,” switching to a gloomy-sounding minor key and back to the cheerful one. She’d let kids ring the large loud cowbell, which she kept in case she needed to calling for help. And her clever quips helped: kids would stop staring and laugh along with her.
But not always. She wrote me that “My six-year-old friend Hank came over to visit, and I yanked out my speaker and said ‘Hi, Hank.’ He looked surprised, stared at me, and said, ‘Oh, last night I dreamed you could talk.’ I said, ‘I dreamed that once too.’ ‘Oh,” he said, ‘I guess I’d better go now.’ I did cry for a moment after he left because he had such a nice dream and wanted to find out if it was true. Is it healthier to be angry, or to cry a bit? I guess a bit of each.”
And yet she never indulged in self-pity, and fought our worry, as well. “I told Dr. di Simone that next time one of my bossy sisters calls, to tell your office to say, “Dr. Di Simone is busy with Mrs. Shutt, in Autopsy.”
She didn’t have long to live, but she stayed open-eyed and interested, engaged in conversation with each moment of life that remained. And her wit never deserted her. As she wrote me in one letter: “I wish people would stop praying for me, lighting candles, kissing me solemnly on the forehead as if I were a station of the cross in a Catholic church. I don’t mean to be ungrateful – I’ve just opted to enjoy each day – and all the absurdities of my experiences.”