I began my first semester with a small load of classes as I knew from experiences I’ve already had, that exhaustion was a big deal for me. So I spaced my classes strategically throughout the week with days off to allow for rest. Even still, my days began filling up with tasks of college life. I was a very interested and involved learner wanting to grasp everything I could. Reading text books took using a method I came up with of placing rulers above and below the line on the pages of text assigned to be read. Worked pretty good too. Having been out of high school for over 20 years, I really had to brush up on my math, like from the very first stroke… In order to meet the math requirements later in the program, I needed to take remedial math classes where starting from simple addition was the norm. I made it through this well, it was when I arrived to the algebra classes when things became fuzzy… my brain is not a math brain, period. Hence, the need for rest!
On one of the days without a class to attend an amazing event occurred. It was a warm and sunny day and I really felt like being outside. A trip to the back yard was no small feat as it meant getting down the deck stairs around the corner and down a sloped yard to a spot where a lawn chair could sit evenly. After a many attempts, I finally got things set up with stability and settled in for some sunshine on my shoulders. Given my experience at the onset of my disability, I learned to keep the phone with me, just in case, and just as I was letting myself go to the wind, it rang.
“Hello, Cheryl? This is Dr. Paul Bach-y-Rita. I’m a doctor and researcher from the University of Wisconsin- Madison. Your otolaryngologist, Dr. Mark Pyle, gave me your name. May I speak with you a moment?”
I replied, “Sure, but what is this about?”
“We are working on research involving sensory substitution and Dr. Pyle feels you may be a good candidate to help us test a device we are developing for persons who have balance problems called the Tongue Display Unit (TDU). It is a device that captures your movements and takes those movements and displays them as stimulations on your tongue. You see, sensory substitution is taking one sensory connection and replacing it with another so that the message that has been taken away from illness, or in your case, ototoxicity, can be sent to your brain in a new way helping reconnect those senses, or rewire your brain, to so that you can recapture your loss sense of balance”
“Really…” “so, how does that work?” Little did I know at that time I was speaking with a world renowned researcher, physician, teacher, and humanitarian of amazing depth.
“Let’s take vision as an example – we do not see with our eyes, we see with our brain. Our eyes merely capture images and once to the retina, the brain takes over. If a person who has no vision could feel their environment instead of seeing it, those feelings can replace vision and produce “sight” in a new way – feeling sensations instead of seeing things.”
I thought to myself this just can’t be real. How in the world could someone see using their tongue and how would something like that work for someone like me who has lost their sense of balance? It all seemed silly, and well, very futuristically strange.
Paul and I spoke at length about his work and I found that he had been researching sensory substitution since the early 1960’s having had his work recognized by prestigious medical journals and peers. Paul then asked me if I would be interested in coming to Madison to help them test the TDU for balance applications. It took me just a few seconds to say, yes. Why not? What did I have to lose, right? What I didn’t know was that this was just the beginning of what I later would welcome the loss of – the noise of disability….
I’m loving this Cheryl. I felt chills run down my spine when Paul called. I was really moved by the post about your Mom too. What an awesome tribute. I find myself anxious for your next post. I also am enjoying the pictures you have been including with each post. Some speak volumes. Happy writing!
Thank you so much Kathy. I’m happy to know you are sharing this journey with me. Enjoy a day of exuberant joy!