The Lull

           Because of the “coming down” reaction I experienced and that we were now testing the device in a standing position, changes to the research protocol were required.  That meant a lull in using the TDU…  It took a long time for the protocol to be revised and then re-approved by the University’s IRB, the Institutional Review Board.  That meant I did not have the opportunity to use the TDU for several months.  That sucked.

            However, I continued with my studies at Madison College.  I learned a lot about accommodations, about ways to get around the campus, and ways to make it through classes, homework, and exams.  Because of this I was able to do very well on assignments and exams. 

But the one thing that I couldn’t make a difference in was my presence mixed among other students.  I couldn’t carry a backpack, it put too much strain on my ability to walk and I certainly didn’t need that.  Besides, trying to carry a backpack made me lean forward even further in an attempt to adjust to the weight of it, making me stick out even more, like a sore thumb.  I had to come up with something.  Luckily, I found a luggage carrier on wheels and found that my backpack fit it perfectly!  With a little trial and error I made a makeshift rolling backpack which I attached to the luggage carrier with bungee cords.  Now I didn’t need to worry about the weight of it.  A perfect solution that worked wonderfully!   So, with a cane in my right hand, the luggage carrier/backpack roll-about following behind me in my left, I set out to make my way through an ocean of students.  Whew… still not an easy task. 

People were everywhere, moving in and out of their own plans and unknowingly moving in and out of my challenges.  Walking through halls was the most difficult.   Oddly enough, I found the quicker I walked, the easier it was for me to get from point A to point B and once I started on my way, there’s no quick stopping.   Because of that, I needed at least 5-10 feet to come to a full wobbling stop!  If I needed to stop quickly I had to put my cane in front of me and stand there wobbling almost in a circle until I could re-orientate myself to my actual position.  This took a lot of practice and often I reached out and grabbed another student to help stabilize myself.  Imagine the look on their face!  Like we learned in driving classes, never pull out in front of a semi trailer, they can’t stop, and neither could I.

In spite of the fact I felt like I was constantly falling, I just kept moving.  My sight was filled with a sea of bouncing and blurring people mixed in with walls, floors, posters, and doors all swirling about in a circus of confusion.  I felt the stares, I heard the whispers.  But my own whispers held my conviction to make this work.

I recall one very hurtful experience.  I was in the library studying and time arrived to work my way to my next class, Intro to Psychology.  Being early, the halls were clear of students who were still in class.  That was always a relief…  As I made my way down the hall I saw a line of bouncy, blurring students sitting in a row against the wall at the very end of the hall.  I stopped to get a better look, just to be sure that’s what I actually saw, and continued on my way.  As I approached closer I could tell they were all looking at me, watching me wobble and stagger my way towards them.  I suddenly felt a spotlight of stares.  Keeping my head down to orient myself to the ground, then stopping, raising it to be sure I was still on the right path, the spotlight and stares continued.  I got closer and closer and at one of my orientation stops I saw the student who was closest to me tap the one next to him, point at me, and like a set of dominoes, the tap and point when down the row past each of the students sitting there.  When finished, they were all staring at me, watching me wobble my way past them.  The feelings this rose up in me were those of being ashamed, self-conscious, frightened, a freak…  I rounded the corner from where they were sitting and something else struck me; anger.  I left my backpack and with my cane walked back to where they were sitting and said; “Do you have any idea how your reaction to me makes me feel?  Do you have any idea what it’s like to put myself out here like this to make my life better?  Do you realize that I am here to do same as you?  I want you to know that what I just experienced through your actions will forever haunt me, I hope this does you.”

I retraced my steps around the corner, grabbed my backpack and within 20 feet was at my classroom.  I went in, sat down, and sobbed. 

Eye with TearImage from Google Images

This entry was posted in Accommodations in college, Biomedical Research, Clinical Research, Disability, Disability Noise, Gentamicin, Going to college with a disability, Inspiration, Institutional Review Board, Motivation, Oscillopsia, Ototoxicity, Self Help, Sensory Substitution, Tongue Display Unit, Transition and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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