I met Dr. Paul Bach-y-Rita for the first time on the Spring of 2002, five years after my introduction to disability. I traveled to the UW-Madison’s Medical Sciences building where I was greeted near an entrance by Mitch Tyler, a biomedical engineering researcher working with Paul. From the moment Mitch and I met I knew I was in for an incredible adventure as something almost magical seemed to appear once I saw him, one of those “this is supposed to happen” moments.
Mitch Tyler and the Medical Sciences Building on UW-Madison Campus
Having Mitch meet me at the entrance was a wise decision as navigating to the lab meant having to use elevators, go through several winding hallways and doors making it feel more like a maze than a building. As I had come accustomed to, or rather taught myself to do, I paused to settle my vision to note various landmarks along the way so that with hopes my memory for color and shapes would serve me well so I could find my way out, but more importantly if this thing really worked, back in.
There was an old yet functional loudly patterned sofa, an “eye wash” area, a giant chest freezer that I was afraid to ask what was inside, after all I was in a medical building… I noted posters, and even stopped to see what they were about but mostly attempted to remember colors. I had gotten good at navigating by color…
We arrived at a small lab where we were joined by Dr. Paul Bach-y-Rita, a gregarious yet quiet and humble man whose appearance was a handsome combination of Albert Einstein and Groucho Marx. His face was lit up with an smiling and eye twinkling excitement and promise of what was about to happen in that tiny lab.
With Paul was Yuri Danilov, a physiologist from Russia who at first glance upward to his tall height seemed larger than life and rather daunting in presence. I would come to know Yuri as a very kind man.
The lab was filled with equipment, papers, books, notes, computer parts, prototypes, and as I came to learn, the most incredible minds in medical research one could ever have the great fortune of meeting.
The air was dancing with excitement, knowledge, and sheer determination as Paul, Mitch, and Yuri described the work they were doing. “Sensory substitution in theory is replacing one sense with another to get messages to your brain in an alternative way. Re-wiring your brain.” For example, your sense of balance has been destroyed because of the damage the antibiotic gentamicin did to the vestibular system in your inner ears. The messages your brain had received prior to the damage can no longer get to your brain because those signals have been cut off.” They went on to describe what a vestibular system is, what it looks like and how it works and why mine no longer works. It sure would have been nice if I was provided this type of detailed explanations when I was first diagnosed…
Showing me a picture Mitch explained, “The vestibular system is located in the inner ear, in the circular canals that make up your complete inner ear structure. What the vestibular system is made up of are little tiny microscopic hair cells.” Mitch held up one hand wiggling his fingers as they pointed upward, then laying his other hand flat and on top of the tips of his fingers he went on to explain, “on top of the hair cells lies a jello like substance called Otoliths. As you move about in your environment the otoliths “tickle” the hair cells and they move.” Mitch moved the hand he had placed above his wiggling fingers back and forth to simulate movement. “When the otoliths tickle the hair cells a signal that you have made movement is sent to your brain through a nerve called the eighth cranial nerve which interprets your movements, this is what makes us feel in balance. Because the gentamicin killed off your hair cells they are now laying flat and stuck together so they can no longer connect with the otoliths and the signals can no longer reach your brain.”
Image from Google Images
No one had ever really explained this to me in this way and for the first time since I my introduction to disability, I found an understanding of my condition that actually made sense to me. A cloud of confusion lifted and in its place was a ray of hope that went on to brighten a way for a monumental transformation in my recovery.