THE WHEELCHAIR and THE URINAL

On Thursday, April 27^th Ron was invited to speak to hospital therapists, nurses and administrators who work with stroke patients in Victoria. Two sessions were scheduled for the day–the first one in the morning at Royal Jubilee Hospital, and the second one, in the afternoon, at Victoria General Hospital. Both sessions were well attended with approximately sixty people crammed into the lecture room at Royal Jubilee, and approximately forty people at VGH. A few people attended both sessions and the feedback Ron received was excellent.

His presentation to both audiences was substantively the same. He opened his talks with a reading from Chapter Seven of THE DEFIANT MIND entitled “The Wheelchair and the Urinal.” This chapter recounts Ron’s arrival on the Rehab Ward of NRGH (Nanaimo Regional General Hospital) from the Acute Care Ward on the fourth floor:

            “Don’t fight me,” he said.

            “I’m not,” I said.

            Once again I heard that strangely garbled voice.

            “You are.”

            He held me in a modified bear hug, trying to transfer me from the stretcher to my new bed in the rehabilitation unit. Somehow he managed to get me sitting upright on the edge of the stretcher, then by gaining purchase under my arms he got me standing on two very wobbly legs, at which point I grabbed him with my left arm and clung to him like a bear cub to its mother.

            I was terrified. As soon as I was standing, my entire right side collapsed like an accordion. What was happening to me?

            “Relax,” he said. “You need to trust me. I know what I’m doing.”

            Trust. This was one of those words I would soon learn was critical to every phase of my recovery. Trust, and the need to be brave.

           

            For people like Ron, who a mere week before, had been a seemingly healthy, fully functioning, independent person, able to dress himself and drive his car, a stroke is a bolt out of the blue, traumatizing and brain bursting. The struggle to re-orient one’s self in the world with a damaged brain and a lost sense of belonging, becomes a major struggle. Wheelchairs and urinals, although helpful aids, can seem alien and even threatening.

            Because of the brain damage that stroke survivors have suffered their perceptions of the world may be radically altered. While some functions are lost, other senses may be heightened and some experiences can even be terrifying and cause people to feel they are going crazy.

            One of the people Ron contacted, after his formal rehabilitation had run its course, was a Dr. Hobson, a neurologist at Harvard University in Boston. Dr. Hobson suffered a stroke while on vacation in the south of France about sixteen years ago. Upon his return to the US, Dr. Hobson tried to persuade his Harvard colleagues that the experiences he had had during and post stroke had convinced him that, if the personal stories of stroke patients were recorded and written down, over time there would be enough anecdotal information collected that could provide valuable insights into the workings of the brain. Dr. Hobson’s post stroke experiences, when viewed from the perspective of current, scientific knowledge, would have been discounted as the impossible rantings of a lunatic. But, as Ron emphasized in his talk, stroke survivors have extraordinary experiences. He cited the example of the man who, after his first stroke, while watching the Beijing Olympics, had felt himself transported over the television signals to Beijing where he was able to observe the events “first-hand.” After his second stroke this same man acquired the ability to “taste colours.”

            Every person’s story is important but stroke survivors’ stories, if taken seriously and recorded, could have much to teach us about the marvel that is the three pound mystery in the heads of each one of us–the marvel that is the human brain.