It’s hard to imagine a more devastating diagnosis than ALS, also called Lou Gehrig’s disease. For most people, it means their nervous system is going to deteriorate until their body is completely immobile. That also means they’ll lose their ability to speak.
So Carl Moore of Kent worked with a speech pathologist to record his own voice to use later, when he can no longer talk on his own.
‘It’s almost like preserving a piece of yourself’
Most ALS patients only live a few years after diagnosis, but Moore, a former helicopter mechanic, is the exception; he was diagnosed 20 years ago. At the beginning, he lost use of his hands, and it wasn’t until years later that he found that the symptoms were affecting his speech.
“You can hear my three-shots-of-tequila speech,” he said. “And it does get worse as I get tired.”
So several years ago, before that slur crept in, he recorded hundreds of messages and uploaded them to the speech device he’ll someday rely on. The machine looks like a chunky tablet computer, and it would normally sound like a robot. But thanks to the recordings, it will sound like Moore instead.
“It’s almost like preserving a piece of yourself,” he said. “I’ve taken auditory pictures of who I am.”
Moore has banked messages range from the practical (“I feel tired.”) to the absurd (“You know what? Your driving sucks.”) and somewhere in the middle (“Hey, my butt itches. Would you give it a bit of a scratch?”).
Moore is kind of a snarky guy; some of his messages can’t be played in decent company. It’s a part of his personality that he’s rescuing from the disease. And it’s not just for his own benefit. Message banking also helps his caregiver and wife, Merilyn.
“If it’s a computer voice, I think it’s harsh,” said Merilyn, “whereas if it’s his own voice, I can feel like he’s actually speaking those words.”
‘Everything was about loss except the possibility of communication’
John Costello, a speech pathologist at Boston Children’s Hospital, is credited with inventing the clinical use of voice banking. He says it can make a big difference in people’s quality of life.
“If you wanted to say something like, ‘You’re the love of my life,’ having that in synthetic speech is devastating,” Costello said.
One patient’s wife, he says, contacted him shortly after her husband’s death.
“She wrote to me that the work we did was the only bright forward movement. Everything was about loss except the possibility of communication,” Costello said.
The person helping Carl and Merilyn preserve that possibility is Roberta Kelley, a speech pathologist at Seattle’s Virginia Mason Hospital. Kelley says ALS is a relentless march toward disability and death. But voice banking lets people snatch something back from it.
“It gives the patient something to do when they have no control over the disease,” Kelley said.
Yet for all its benefits, in Kelley’s clinic, only a fraction of patients actually do it.
“The ones that don’t do it can’t deal with it,” she said. “They don’t want to think about using an electronic piece of equipment to talk. So most of them nod, smile and do nothing.”
On preserving messages of tenderness, intimacy
Heartbreakingly, many patients come back hoping to record their voices after it’s too late.
Carl, on the other hand, brings a mechanic’s pragmatism to the project, and he’s clearly having some fun, too. Besides letting him razz Merilyn for years to come, the recordings will become an archive for her.
“I see this also as a legacy, which will feel like his presence with me even after he’s gone,” she said.
So Merilyn wants to make sure Carl has banked the really important things, which raises the question: Where, among the witty barbs and the practical lines, were the messages of tenderness, of intimacy?
“My conversations are mostly sarcastic,” Carl said. “She asked me before we left if I had the phrase ‘I love you,’ and I realized I didn’t.”
He says he’ll make more recordings at some point, sooner rather than later. The trouble, he says, is his voice has already gone downhill.
“We’ll see how it works out. I’m not comfortable with recording my voice as it is,” he said.
“I think that it’s important that we capture you as you are now,” Merilyn said. “We love you as you are now just as much as eight years ago.”
“So I will record, ‘Yes, dear,'” said Carol.
Later, Carl dug back through his hard drive and discovered that he had, indeed, recorded himself saying “I love you.” So he added it to the device that will someday speak for him.