May 30, 2011
We’re camped in Golden, B.C. , by the rapids of the Kicking Horse River surrounded by mountains, many of which are snow-capped. Each night we are in awe of our surroundings. Skye had vigorous climbs today, and again we played leapfrog. He started off cycling. I finished tasks in the campground, and then drove until I passed him and pulled over so he could get water and food before cycling again. I tried to catch up with emails and other tasks as I waited for Skye, parked in one scenic spot after another, surrounded by mountains, across the road from waterfalls, beside rushing streams and rivers in the presence of towering coniferous trees.
Right now the question is if we are going to be within range of cell phone and internet. This is our connection to Kerr and Burns, to our cross-country network, as well as my connection to my clients in Toronto. For those who don’t know me, I’m a psychotherapist, and it has been quite difficult for some of the people I usually see that I have left Toronto for three months. I have agreed to do sessions as possible over the phone, but it has been more challenging than I had anticipated with the three-hour time difference, with Skye’s schedule and needs, with events and media. The unpredictability of cell phone and internet complicates matters, and all appointments are conditional on the availability of cell phone reception. It’s by no means ideal.
The uncertainty I feel about whether I am going to be able to reach the people I need to communicate with makes me very aware of the uncertainty Kerr and others who communicate with AAC must feel on a regular basis as they go out into the world. Will there be communication and connection? Will there be acceptance and understanding? Will there be patience? Will there be attunement? Will there be success or disappointment?
I had an experience when I was a child which I’ve been remembering lately. In my childhood excitement over a school party, I was doing some over-zealous ballet leaps in my bedroom one morning. I crash-landed with a bad bump of my head, which resulted in an acute headache. I was determined to go to the school party, so I didn’t let my parents know, but when I tried to put on my coat and boots, my hand-eye coordination was totally askew—I couldn’t get my arms into my jacket sleeves or my feet into my boots. Soon afterwards, my speech became completely garbled. I have a vivid recollection of lying on my parents’ bed, being very clear-headed, knowing exactly what I wanted to say, but hearing my own gibberish every time I tried to speak. The people around me were panicking, and I had no way to tell them I could think and understand in the same way as usual. My experience only lasted for a number of hours, but it was profound and isolating.
Years ago I met a middle-aged woman who had had a stroke when she was in her early 20s. She talked about lying in bed for about a year, having no way to speak at the time, but understanding everything, including the conversations among the people who came into her room and talked about what a shame it was that she was ”a vegetable”. No one thought to offer her an alternative way to communicate.
And what about alternative ways to listen? We’re hearing about the frustrations with AAC technology from many of the people we’re meeting. Some are able to speak, but not in a way that can be easily understood by others, although they often cannot understand why this is, because to them, their speech is completely understandable. To them the AAC technology is slow and tedious in comparison to their speech. Others use their own personal sign language and don’t understand why those who have known them for awhile haven’t learned that personal sign language. We certainly have a number of friends who communicate without language, and the challenge they pose to those of us around them is how to listen when what is said is without words. The questions I am asking on this journey are not only about the many ways to communicate, but also about the many ways to listen.