The other day, my husband and I decided to play hooky. It was a perfect day - a robin's egg blue sky, with faint smudges of cloud - the kind of day that makes it easy to be grateful. As we chatted, reminiscing about the first time we met, it struck me that except for a couple of times in my life, I have always possessed the power of speech. Speaking has always been as effortless as breathing, and I was suddenly filled with a deep gratitude for this gift.
Well, no doubt my epiphany was partly the result of reading 'My Stroke of Insight', by Jill Bolte Taylor, a moving account of one woman's journey into a "world between worlds." In the space of four hours, the author was unable to speak, read, write or recall any of her life. As Taylor said, her stroke essentially left her severely mentally ill, without the ability to articulate her thoughts or feelings to the outside world.
A few months ago, I watched a video about Carly, a severely autistic and developmentally delayed teenage girl, who up until a couple of years ago was unable to communicate with the rest of the world. Unable to speak, she took matters into her own hands, and slowly began to type her thoughts into a computer. The computer was a portal into a world where communication is possible. For a girl who had never uttered a word in her life, this was freeing.
Carly revealed to the world how it feels to be autistic. For the first time, Carly was no longer being talked at - she was taking the reins and sharing her story. Carly's father expressed gratitude that they were able to provide a means for her to not only speak, but communicate with others. Until then, no one around her knew how she felt about anything. Why she habitually hits herself, or makes odd noises, for example. Her family members were desperate to get a glimpse into Carly's interior world. Typing slowly, she revealed how she wanted to be treated, and explained that "it's hard because no one understands me." The computer became her voice and the message she sent was simple: Never give up.
Last Sunday, I thought of Carly as I watched 'Brain Power,' a segment on 60 Minutes. At 40, Scott Makler was diagnosed with ALS. Unlike Carly, Scott is unable to type, but just like her, he is unable to speak. Now, believe me, I know as much about neuroscience as I do football (read, next to nothing). So I couldn't quite wrap my mind around the sight of a man seated in front of a computer, wearing a cap studded with white circles, eerily reminiscent of 'Brainstorm'.
Scott Makler's brain was directly connected to the computer, and the white circles (electrodes) picked up faint electrical signals from his brain and relayed them to the computer. The computer flashed random letters on a screen, and Scott concentrated on each letter, finally creating whole sentences. The computer revealed Scott Makler's thoughts, allowing him to once again communicate with those around him. His wife said, "he's happier now." This new technology has given him back his independence.
It begs a question: What could this new technology mean for an intellectually, as well as physically disabled person? It saved Scott Makler's life, literally. Before having his brain hooked up to a computer, Scott had made a decision. He would never use a ventilator to help him breathe. Now that he is able to go to work, and communicate his needs, wants, and dreams to his family, he is on a ventilator. "I can communicate with them now," was his answer when asked why he changed his mind.
As an autistic adult wrote in his blog, This Way of Life, "speaking isn't what is important - communication is. Besides the differences in the actual mechanics of speech, there are also the problems I have communicating my desires and needs. It is very, very difficult for me to ask a simple question such as, "Can you turn down the TV?" I might be near meltdown, due in part to a loud TV, but I can't actually communicate a need that I have. This is why developing communication is so much more important than developing speech."
Perhaps my gratitude for the ability to speak should also encompass all of the technology-based tools that exist at this time. For as Carly and Scott Makler observed, it's all about staying connected with those around you, by whatever means are available.
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