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How a new technology is changing the lives of people who cannot speak

Last November, Joe Morris, a 31-year-old film-maker from London, noticed a sore spot on his tongue. He figured he’d bitten himself in his sleep and thought nothing more about it until halfway through the winter holidays, when he realised the sore was still with him. He Googled “cut on tongue won’t heal” and, after sifting through pages of medical information on oral cancer, he decided to call his doctor.

The cut was nothing, Joe was sure: he was a non-smoker with no family history of cancer. But he’d make an appointment, just in case.

I’m sure it’s nothing, the doctor said. You’re not a smoker, and you’re 31 years old. But see a specialist, just in case.

I’m sure it’s nothing, the specialist said, you don’t check any of the boxes, but we’ll do a biopsy, just in case.

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When the biopsy results came back positive for cancerous cells, the specialist said that the lab must have made a mistake. The second time Joe’s biopsy results came back positive, the specialist was startled. Now Joe was transferred to Guy’s hospital, which has one of the best oral cancer teams in Britain.

The oncologists at Guy’s reassured Joe again: the cancerous spot was small, and cancer of the tongue typically starts on the surface and grows inward. This tiny sore could likely be nipped out without much damage to the rest of his tongue. They’d take an MRI to make sure there wasn’t any serious inward growth, and then schedule the surgery.

The image revealed a tumour like an iceberg. It was rooted deep in the base of Joe’s tongue, mounding upward and out, its tip breaking the surface just where the telltale sore was located. “When the doctor told me the news, there was a work email that was bugging me and I still had that on my mind,” Joe wrote to me last summer. “As he was explaining to me that I was going to lose my tongue, I was redrafting a reply in my head.”

“You’re going to lose two-thirds of your tongue,” the doctor was telling him. “This is going to seriously affect your ability to eat. And your speech.”

Joe wanted to know how the surgery would affect his speaking. Would he have a lisp?

The doctor hesitated, and then looked at his hands. “Your family will still be able to understand you.”

A week before the surgery, Joe started to panic: he realised that he might never speak again. Even if he did, he would no longer sound like himself. Knowing that he was about to lose a huge part of his identity, Joe asked a friend to film an interview with him so that he would have a permanent record of his voice.

In the video, Joe’s speech is already beginning to falter: he has a bit of a lisp, and he has to sip water frequently and take breaks to withstand the strain of talking. He is dressed in a black knitted V-neck sweater, and seated near a window through which you can see the London skyline at dusk. He is pale, with sunken, blue eyes, dark, shaggy hair and three days of stubble. He looks a little unwell, a little sad, and a little rueful, as if he’s unsure about being the centre of attention. He keeps ducking his head and looking away, or making jokes. When asked to state the date, he smirks and says, with wry formality, “The date is, I believe, the 24th of February, the year of our Lord 2017.”

Speaking to the camera, Joe struggles genially to articulate what it feels like to contemplate losing his voice for ever. “I’m not what you’d call a vain man,” he says, quietly. “Usually it’s very far into the day before I’ve looked in the mirror. I don’t care about any of that.” He takes a moment. “But I am human. And the idea that I’m going to not look like me or sound like me … terrifying.” He swallows. “And also my job, my life, is all about communication, all about talking. I love talking,” he says feelingly, with a little smile. “I’ve got a few things to say.”

Shortly before this video was taken, the friend behind the camera had come to Joe with some news. He had found a company outside Boston called Vocal ID, which creates custom digitised voices for people who use devices to help them speak. The company could use recordings of Joe speaking to recreate his own voice on a computer for him to keep and use for ever.

When they contacted Vocal ID’s founder, a speech pathologist named Rupal Patel, she explained that it would be possible to digitally reconstruct Joe’s voice if, before his surgery, he was able to “bank” his voice. This meant recording the few thousand sentences that Vocal ID has developed to capture all the phonemes in the English language.

Joe agreed to try. He recorded several hundred sentences and then, realising the magnitude of the task, stopped for several days. “This was my last week of freedom and I had a lot of stuff to do, people to see, life to live (and steaks to eat),” he wrote to me. Two days before the surgery, he started again. Banking his voice was slow and painful – by then, it was excruciating to talk, and he was trying to be at his most eloquent. On the final day, he recorded late into the night.

The next morning, Joe went back to hospital and had his tongue cut out, joining the ranks of those who cannot, in any traditional sense, speak.

http://bit.ly/2n2iTUp

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