How one couple learned to communicate when ALS took his voice, using an old-fashioned alphabet and open-source technology.
The eyes of a loved one hold precious power—at once startling and familiar. We like to believe, as Shakespeare wrote, “the eyes are the window to your soul.” Staring into the eyes of a stranger for four minutes is said to make us fall in love. With just our eyes, we can say an awful lot. And for Lorraine and Don Moir, for many years, the eyes have been the central means through which they’ve communicated.
More than 20 years ago, Don was diagnosed with ALS (also known as Lou Gehrig’s disease). He and his wife Lorraine had been married for six years then. “At first it was pretty overwhelming, I guess, because our kids were very young—babies and toddlers really, when he was first diagnosed,” Lorraine remembers. Quickly she learned to run the family farm, do the books, change the oil, all while tending after small children. Lorraine proved capable of her plentiful duties but “compounded with that was just the emotional ride of watching him deteriorate week by week.”
Don and Lorraine Moir, photo courtesy Not Impossible Labs.
Sixteen years ago, Don went on a ventilator, and with that, he lost use of his voice. “The day he was intubated…we kind of figured out a system ourselves at first,” says Loraine, “I just said, ‘ok, I’ll say the alphabet and you just blink when I get to the right one’—but if you wanted to spell a word with y in it, that would take a little bit longer.”
Within a day or two of Don’s intubation, a speech therapist offered the idea of a letter board—a piece of paper split into quadrants with alphabet letters in each. Don looks to the quadrant that contains the next letter he wants to use in a word he’s spelling, and then Lorraine rapid-fire rattles through the letters located there. He blinks in selection, and they move to the next letter. It’s a tedious system that requires the aid of Lorraine or one of the Moirs’ children.
“Some people aren’t as intuitive with it as other people,” says Lorraine. “It is a challenge for Don using the letter board with people outside our immediate family… Most people aren’t comfortable, they don’t feel comfortable learning to use it.” She adds, “When we do the letter board it’s just me interpreting. He's spelling out to me, and it’s my voice saying what he wants to say.”
One of the realities of voicing through a letter board is that words—even those that express our most profound emotions—must be selected sparingly. “He has things he wants to say,” says Lorraine. But with the letter board, Don has to think through everything and put it into as few words as possible, “just because of the time it takes to spell everything out.” Plus, as Don said (through Lorraine, who flitted with him through his letters as he answered) the most frustrating thing about not having a voice is that he “always has to speak through me or one of the kids.” They spend most of each day together, Don’s words channeling through Lorraine.
“If you spend maybe 10 minutes in their presence, you will understand the amount of love they have for each other,” says Javed Gangjee a volunteer engineer with Not Impossible Labs working on a new voice for Don. “I'm not exaggerating when I say that she would look into his eyes, just simply look into his eyes, and they would have these conversations… It's just beautiful to see how they talk.”
Gangjee met the Moirs in July 2011, after Lorraine heard on the radio about Not Impossible Labs, a start-up that develops open-source and low-cost technologies like the EyeWriter, a device created to help LA-based graffiti artist and ALS patient Tempt One draw again, using eye-tracking glasses. Around the time Gangjee met the Moirs he was busy adapting the EyeWriter into the Brainwriter, since Tempt One had lost his eye function.
“When I first met Don,” says Gangjee, “I actually went in with a brand new keyboard and brand new software.” It was free software commonly used by people with Don’s debilitations. “But when he tried it out, he just said, ‘I'm sorry, I can't use this. This is too complicated for me.’" Don was diagnosed in 1995 and missed the personal computing revolution. Even Stephen Hawking’s recent interface updates required rethinking—the astrophysicist similarly missed smart phones and doesn’t use common computer commands.
Gangjee went through six iterations of the virtual keyboard, eventually basing the computer model on Lorraine’s paper letter board. An eye-tracking program built by Gangjee called “Don’s Voice” follows Don’s eye movements as they move across the computer screen and over letters. From there, Don’s Voice predicts letter and word combinations that Don selects by looking to the center of the screen. The computer then verbalizes his words.
It took him half an hour to write his first word, “wheat,” a selection appropriate for a farmer. After practice, it took a half-hour to write a full sentence. The technology is adapting and Don is learning. For their 25th anniversary, Don wrote Lorraine a 50-word love letter in half an hour. (According to Lorraine, the love letter was Not Impossible CEO Mick Ebeling’s idea.)
It was sweet, but the profession of love through the computer wasn’t a shock for Lorraine. Don and Lorraine have developed a beautiful web of communication that requires careful attention and eyes trained between letters and one another. “He probably says ‘I love you’ to me at least once a day, anyway, but he maybe doesn’t go on and on about it like he did in that letter,” Lorraine says. (‘On and on about it,’ like he did with his 50 words, roughly the equivalent of two medium-length sentences.)
The difference is that Don’s voice is Lorraine’s; the software Don’s Voice is his, even if it is still developing, and he works on it in hopes that the open-source technology will someday offer a voice to others. “It is nice for him in that he can just sit and write out a complete thought,” said Lorraine. Don’s Voice is simply another means to reaching Don. “It’s different, certainly, hearing a computer voice saying his thoughts, but I guess the important thing for both of us is that we can we understand each other—we want to understand what’s going on in the other person’s head,” says Lorraine.
In their day-to-day life, with all their kids grown, on their own or at university, Don and Lorraine still mostly rely upon the letter board. When their son Luke was home over Christmas break and had knee surgery, Don used Don’s Voice to razz him for sitting on the couch, bored, feeling sorry for himself. Don hopes to begin using the software to email and stay in touch with his kids. He wants to be able to email his friends, too, and as Lorraine puts it, “talk to them about farm things or whatever.”
“I guess this means it’s back to the drawing board and figure out how we can get him to send emails,” says Gangjee. He thinks he can do it.
As the software evolves, Lorraine says “I think he’ll get much more chatty if it works smoothly. Don’t you, Don?” She pauses for his response. “Yes, he thinks so, too.”