"I'm lonely": Immune to Apraxia, Toronto doctor refuses to give up on a cure

Nov. 4, 2016

Lily Abello thought she would lose her ability to speak in April, just as everyone else she knew did.

"I kept waiting for the other shoe to drop," she says in her clear alto voice. "I watched my husband, my mother, all my friends, have difficulty forming words, speaking nonsense, then not speaking at all. I read the news. I didn't know anyone else who could still speak, so I figured I was just behind the curve."

It wasn't until this month that she finally accepted the truth. Abello, like an estimated three percent of the world's population, seems to be immune to the Global Apraxia of Speech.

Now, the Toronto pediatrician is urging the world's governments to keep funding research and find what Abello calls a "cure" for a condition that is now nearly universal.

The British writer and activist Alden Hood recently wrote in The Guardian that "to look upon the mass of humanity as being somehow deficient because they are changed is to indulge in a new and brutally nostalgic form of elitism. It is not speech that makes us human, but language."

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Abello subscribes to the theory that the Apraxia came from some external contamination or infection, perhaps carried through proteins, similar to the transmission of Creutzfeldt-Jakob disease.

Critics of that theory, such as Toronto's medical officer of health, Joanne Lew, point out that unlike other so-called prion diseases, the Apraxia does not seem to be degenerative. The fact that humans with Apraxia have maintained their ability to read, write and understand spoken speech makes Lew skeptical of the infection theory.

"These are isolated changes to a very specific part of the brain that we're seeing," says Lew, "the kind you might expect from a stroke or trauma. It's almost as if a tiny, precise bomb went off in every human brain at the same moment."

Or almost every human brain.

Lew does not directly respond to questions about terrorists or aliens, but says, in an email that echoes the carefully coordinated media "lines" from every health department in the country, that those who are searching for a cure may be deluding themselves--and worse, wasting time and resources that could be better spent on adaptation.

"We need to make sure that all people, in all countries, have access to text-to-speech and to instruction in signing," says UN Special Envoy Tina Badely. "What we've seen so far is that the Apraxia has a tendency to reinforce inequality."

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So far, no other neurological effects have been reported, although Abello points out that the Apraxia only started showing up less than a year ago.

"Who knows how long it was dormant, or what its progression might be?" she wonders.

This kind of warning is what some, such as Alden Hood, dismiss as "fearmongering."

"People are shocked when I say we got lucky, but what I mean is that we're lucky it came when it did," he says in an email interview. "The Apraxia hit when humanity had already reached a stage in its evolution that made oral communication obsolete. There is text-to-speech software for those who want it but I don't think we'll be using it in a generation or two. We're a text-based society anyway."

Abello disagrees. She says she finds it difficult to treat her young patients now, because many are too young to text quickly enough to communicate their symptoms or respond to her questions on their own--although many are already learning to sign. She admits that one reason for her drive to find a cure is personal.

"I'm lonely," she says. "I miss talking to my husband, really talking. I'm an extrovert, I guess. And I'm worried about what all this will mean to the bean."

She smiles and rubs her belly, where "the bean"--due in February--is growing. Abello shyly agrees to sing a lullaby (see video) to her belly. She says she plans to speak to the child when it is born, whether or not it has the Apraxia.

Her husband, Dave Goodman, says he is comfortable with this, and he plans to use text-to-speech around the baby as much as possible himself.

"I'm not going to insist that our child learn to speak," he says, using his text-to-speech app as we sit in the family's suburban living room. "But I want to give it the best chance possible. We know that language is related to all kinds of development. Can we just take that out? Can our child learn to text at four or five, when he or she has never learned to speak?"

"This is why we're worried about the long-term effects beyond our generation," cuts in Abello, clearly losing patience with the slowness of her husband's text-to-speech app.

Before the interview ends, Goodman coos a little to his wife's belly, just a string of jumbled sounds but somehow soothing all the same. Abello gives him a pained smile.