Think about the art of conversation. You ask a friend a question. Your friend answers and asks you something back. You answer. Maybe you interrupt when you need to interject something. Maybe you laugh together at a joke. A good conversation flies back and forth with few gaps. We do it instinctively, naturally.
But a conversation with Martin Pistorius works much differently. It’s not that Martin isn’t capable of conversation. He’s fully capable. And it’s not that he’s dense or dull. Martin is brilliant actually, and very funny. The issue is that he can’t speak.
Martin has a book on the New York Times bestseller list right now. It’s called “Ghost Boy: the Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body.” That pretty much sums up the story. He was a normal little kid, growing up in South Africa, when suddenly at the age of 12 he fell ill. His body weakened and he lost the ability to control his movements. For nearly 10 years, everyone around Martin thought that he was a shell of a human — not fully there. His parents were told he had the mental capacity of a three-month-old baby. Only it wasn’t true. For much of that time, Martin was fully aware. He just couldn’t communicate.
Fast forward a couple of decades and Martin is now 39. He has limited use of his arms and can make facial gestures. He uses a wheelchair to get around. And he communicates using a computer program. Martin uses his right hand to type in words or letters on the keyboard (the machine recognizes letter sequences as he types and offers suggested words to make the process faster, the way many phones now do) and when he’s done writing a sentence he punches a “speak” button and a tinny computerized voice with a British accent speaks his words.
To be honest, I wasn’t quite sure what to expect when we met. Martin and I had been emailing each other prior to my journey to his home just outside London. We’d had email conversations. But that’s not the same as face-to-face.
Martin immediately put me at ease with his smile. He answered simple yes or no questions with a nod of the head. And then whipped out his iPad to ask me how my flight was.
It all worked. But it did feel strange. After I asked Martin a question, I waited for him to type an answer. That could sometimes take a minute or more. And the human instinct is to fill awkward silence. Martin and I actually talked about this. He said a lot of people—say at the grocery store or the post office—have a hard time waiting for him to write his responses. They get uncomfortable and jump in with a second or third comment or question as Martin is still typing his answer to the first query. Martin told me he’s constantly trying to keep up, with more thoughts running through his head than he can possibly relay quickly via computer. It’s also difficult to convey emotion or humor.
“It is slow and so by the time you want to say something funny, the moment’s gone,” Martin says.
We wanted to make our sit-down interview with Martin for TODAY and Nightly News as conversational and natural as possible. It was Martin’s first-ever taped television interview, so he was understandably a little nervous. I gave Martin a list of some of the questions I intended to ask. That’s not something that we normally do, but we knew that would give him some time to prepare at least portions of his typed responses in advance.
The taping went very well. Yes — there were gaps of silence. I would ask a question and then wait. Martin would either pull up a prepared answer and edit it or write something new. Then he hit “speak.” The computer didn’t always pronounce words correctly or put inflections or pauses in the right spots. So we would pause, let Martin write a word phonetically or add a comma or something, and then he’d push “speak” again. (In real life, it was cumbersome. On TV, you’ll never know because we can edit out the gaps.)
But Martin was able to share his feelings remarkably well. As he played back answers, he used his face to convey emotional cues.
I asked Martin if he’d learned to depend on facial gestures to get his point across. “I think so,” he said. “I think it is almost a natural compensation.”
Martin picked his computer voice to sound as close to his family’s South African accent as possible. “This one is called Peter,” Martin told me with a smile. “I changed a few years ago to it from Paul, which was an American voice.” His eyes told me he was teasing me, the American.
There was one other thing that was different about interviewing Martin.
A classic trick we TV correspondents often use during interviews is the “waiting them out” trick. As I said before, human nature compels us to fill the silence. Over the years, I’ve learned that when someone starts to get emotional during an interview or starts to say something and pauses… you just wait. Wait for the silence to take hold. Eventually the interview subject will get uncomfortable with the silence and will finish their thought or feel compelled to keep talking, or crying. Simply waiting through the awkward silence often leads to some of the very best moments in a television interview. At one point I thought Martin might be starting to tear up during our interview. We were talking about Virna—a therapist who was one of the first to notice signs of consciousness in Martin. I asked Martin what he would say to Virna now. “I would say thank you for being there when I really needed it and helping to change my life,” Martin said. “You look emotional,” I said. “It’s the first time I’ve seen you– look like you might want to cry. She means a lot to you?” I waited. And waited. I wanted Martin to jump in and fill the silence. But he didn’t flinch. He didn’t reach for his keyboard. He just let the silence hang. His wife Joanna says Martin does that a lot. He is comfortable with silence in a way that most of us are not. And it makes sense. He lived in silence for nearly a decade. “For so many years, I was like a ghost,” Martin told me. “I could hear and see everything. But it was like I wasn’t there, I was invisible, a ghost.” This story originally appeared on NBC News on January 29, 2015
Kate Snow
Kate Snow is a senior national correspondent for NBC News and an anchor for NBC Nightly News. Recommended
