“Hello Mitch? This is Cheryl… I think we did something bad…. “

          Our previous experiments with the residual effect had been resulting in a limited amount of relief at a time, a few minutes or more.   The findings from the first 20 minute trial resulted in the first of extended residual times – over an hour and boy oh boy, did I ever take advantage of that hour

          Although a video of the first ever 20 minute trial was not filmed, there is this one taken after I had experienced four prior 20 minute sessions on the TDU.  This video is from my fifth session.  In this video, shot by former Hollywood producer and writer, Bill Angelos, (more on Bill will be shared in my blog soon), you will see and hear Paul, Paul’s daughter Andrea, Mitch and glimpses of Jordan Davis, former Vice President of Business Affairs at ABC, NBC, and Warner Brothers, whom Bill invited to see the results of the TDU and possibly provide some funding.  I also do a shout out to Wobblers about how exciting this discovery is.  This video clearly illustrates the amazing differences the TDU ignited from which the beginning of silencing my disability began; I just didn’t know that yet…

http://www.youtube.com/watch?v=bjP0ND0wMvg#action=share

           

But then…..

After that first amazing 20 minute experience, I drove home feeling lifted beyond disability and into endless possibility.  But then, accompanying the first extended residual time was the first vanishing of the longer lasting relief.   The decline began gradually with the feeling of heaviness as if the weight of the world, and its atmosphere were pushing me down.  My body began to slowly droop, to stoop and to crumble back to its unbalanced position.  Colors dulled as my vision became overcast with the return of bouncing and blurring sight.  My cognitive abilities wavered in and out, mostly out.  I felt what it must feel like to be a puddle, just flat on the ground, mirroring an outside world unattainable of its reflections. 

It was heartbreaking and terrifying as I rose the next morning to a feeling of extreme exhaustion and what felt like a hundredfold increase of my vestibular dysfunction.  With what I can only describe as sheer guts, I worked my way through it and readied myself for the drive to MATC to attend classes.  The drive was horrendous and, again, how I made it I’ll never know.  Why I attempted it in the first place is probably the better question… 

Once at the college I found myself in such a state of heightened dysfunction that I had to call Mitch.  I was really, really frightened.  I had been coping with my disability for the past 5 years, a lot of time to have gone by to compensate in even the tiniest manner.   That day after experiencing the triumph of that first 20 minute trial, to me, was my introduction to disability all over again.  Everything I thought I had gained seemed to disappear and all that I accomplished in confidence, drive, and inspiration deflated to a state of incredible fear that the research somehow had gone terribly, terribly wrong. 

With Mitch on the phone, me crying in terrified confusion, we talked through what I was experiencing.  What we determined and discovered was that it wasn’t that my disability had suddenly become worse; it was that for more than an hour I experienced freedom from disability’s grip and reunited with “normalcy”.  For that amount of time, I no longer had the noise of my disability screaming at me and taking up the space I wanted to be free in.  Then, when the residual wore off, once again, the noise took over and my freedom disappeared.  It was like being released from prison for a crime I did not commit, then having the prison grab me back and return me to a life sentence for something I did not do, and throwing away the key.  I had experienced a new comparison of two different worlds.  In many ways I had forgotten what the first “normal” world was like because the noisy one that captured my attention had rudely taken over everything about me.  I just wanted that first world to return, I wanted that beautiful silence to come back and last and last, and last – forever….  Little did I know, that a world of sustained beautiful silence was just several 20 minute sessions away…

Rolands Grad Party-Cherokee 235

This entry was posted in Aminoglycosides, Beginnings, Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Transition, Vestibular System and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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