Meningitis left Phil Thorn deaf, blind and paralysed. One language, turbo-charged by technology, offered a lifeline
With AI doing our thinking and voice-to-text apps doing our typing, digital technology has had a major impact on alternative writing systems – though not necessarily in the ways you expect.
Ever since the invention of writing on stone and later paper, scribes have been aware of its inadequacies and come up with ways to get around them. Pitman shorthand (Sir Isaac Pitman, 1837) was invented to record speech in real time, ie, with great speed. Morse code (Samuel Morse, 1837) turned letters into dots and dashes that could be sent over long distances. And Braille (Louis Braille, 1824) converted the alphabet into 3D bumps meaning those without sight could use the sense of touch to read. One of those three is all but extinct and another is severely limited, but the third remains invaluable for some.
Tactile response
With great technological strides, including devices that connect to smartphones, Braille has been turbo-charged for people like Phil Thorn, who is deaf and blind. For him, Braille has been a lifeline. The former manager of a Queenstown camp and conference centre contracted meningitis in September 2008. He was unconscious for six weeks. When he woke up, he found his existence had been totally transformed.
“I had upper body movement, but I was paralysed from the waist down, I was totally deaf and totally blind – in complete darkness and silence, except for constant, screaming tinnitus, like a jet engine 24/7. I actually thought I had been taken captive.”
Cochlear implants have since relieved the tinnitus, although that alone took several years.
Communication was established using “individual foam letters of the alphabet small enough to fit into the palm of my hand, placed on my palm one at a time for me to feel. It was a slow process until I got the hang of what was happening.”
Eventually by this means, his former wife was able to help explain what had happened to him. “Doctors said what struck me could have left me a complete vegetable, or put me six feet under. I had breathing and feeding tubes in me. They had been going to remove them, and my family were told to prepare to say goodbye. They were getting ready to switch things off, when they noticed that I was moving.”
During his long, slow recovery, his marriage broke up – “living in a home with a deaf, blind man is challenging” – and his relationship with his two children, then aged 6 and 3, suffered. Today, still in a wheelchair, he is living independently in a unit at the Laura Fergusson Trust facility in Lower Hutt. “I’ve got my own self-contained unit, which means I have a kitchen, lounge, bedroom and bathroom area, plus a small outside courtyard with my garden, vege gardens and clothesline.”
He’s also studying towards a bachelor of applied science in psychology, writing a book about his experiences, going to the gym regularly and serving on the board of the Deafblind Association New Zealand.
Braille has helped his progress every slow step of the way. After a few false rehabilitative starts, he was introduced to the system the year after his illness.