All hands on deck! Or should I say Tongue?

Chapter 20

All Hands on Deck, or should I say Tongue! 2003

          The call came in – time to restart and reignite the research.

I still had my studies in college to think about. By this time I had plans to

transfer to the Rehabilitation Psychology program at UW-Madison but the break between

finishing MATC and starting UW-Madison gave me time to connect with the research in a

deeper way.

 

A lot of preparation had gone into this next phase, the office, the testing area, the

protocols, everything needed to move along. My role then as Subject Zero was to use the

TDU daily twice daily to assess changes in the residual times discovered earlier.

 
I was asked to log my experiences to keep track of how I felt prior to my use,

during, and after – how long any residual lasted and the changes I felt. Prior to writing

down my experiences, I had shared what was happening to me by talking to Yuri and

Mitch. The more we talked the more my input helped paved the way. Here’s where I really

began to feel like a researcher, this is when I became Subject Zero, Co-investigator.

 

This is where the change in my life really started.

My Favorite Food

Posted in Disability, Gentamicin, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Self Help, Transition, Uncategorized, Vestibular System | Tagged , , , , , , , , , , , , , , , , | Leave a comment

In the Meantime – Back to College

CHAPTER 19
In the Meantime – Back to College – 2003

     Now that I understood how control changes everything I put my energy into treating each day as a good day. I swept away the resistance keeping me from understanding I am stronger than the beast. I found my way through challenges that concealed my need to move on, to leave trauma behind and re-introduce myself to a better life, disability and all. No extra weight on my shoulders, just a lovely wobbly way of life.

I returned to MATC looking forward to a better life. Somehow, my re-introduction to control pissed off the beast which I now realized was in fact resistance. The damn thing fought to raise its ugly head and squeeze me down the drain with it. Still not wanting to give up, the rotten beast tried to crawl out, but I won, I kicked its ass. In trickery I let it come out. I grabbed and pushed it in the path of a Mack truck, mess for it and a clean escape for me.

With a second round of independence and appreciation under my belt came an intensified sense of control. I reconnected with society mingling with all kinds of people. Those who knew me enthusiastically supported my revived creativity and long term vision to share a reflection of experience. Except SFB, that was a given.

MATC opened a meaningful concentration where for the first time in a long time I envisioned a future filled with amazing possibility. Back was my optimism, gratitude for life and happiness as I inhaled the sweet breeze of appreciation. I was riding on the wings of independence.
Don’t get me wrong, college wasn’t easy by any means and often tested my optimism. Lack of balance, the crazy way my eyes interpreted my surroundings, navigating the campus and concentrating on lectures in real time was exhausting! But I did it.

I did it with help from Todd Jones and Beth Bremer. Their support proved I had the strength to cope with exhaustion. When I first met Todd, in the Disability Resource Center, I saw him sitting in a wheel chair. Todd had a serious car accident leaving him paralyzed from the chest down. During our first introduction I thought, what the hell gives me the right to complain about anything! I learned that Todd endured years of physical therapy to regain limited use of his arms and hands. Todd has a real understanding of what disability is and shared with me the hope I needed. Todd is a force of his own. He is amazing. When I connected with him we worked together to establish accommodations that helped support my strengths.

Beth, who worked in the Learning Center, was always there to guide me through assignments that shifted my brain into an explosive overload. Her consistent advice and brilliant way of teaching positioned me reach a new level of determination. Beth is also incredibly funny which made learning fun. So, by combining the assistance and encouragement from Todd and Beth, I discovered that the all my experiences and strengths pre-disability were still intact and transferrable to the new experiences I was creating. What an advantage!

I became great fiends with Todd and Beth where even to this day they are an immense presence in my life. They mean so much to me, they changed my life. I love them.

I always sat in the dreaded front row to minimize distractions. Todd connected me to a student who took notes adding an extra element of information I missed during lectures. I was allowed to use a tape recorder to capture lectures so later I could listen to them in an effort to grasp more. I was even provided extra time on exams in a quiet room. With the use of a note taker I was able to put as much extra concentration I could on lectures as they happened. I took my own notes in a way only I could decipher. My learning had become quite a combination of hearing, writing, reading, and doing.

Noise, paper shuffling, coughs, sniffling, and movement in classes messed with my concentration, especially during exams, hence, using the accommodation to take them in the quiet room, sounds like a place for naughty people… I really hated going there – I felt being absent from the classroom during exams made it known to everyone I had a disability, let alone how it eclipsed my liberation. Then I discovered a way to take exams with everyone else. My strategy: I used earplugs; they put me in a zone of complete silence, except for the ringing in my ears, another side effect of ototoxicity of which I had become accustomed to, well mostly. The earplugs worked, my liberation stayed intact.

Something else I discovered was that I developed an amazing photographic memory, in spite of the way I saw things. I’m convinced this was because of the extra effort I placed into reading and re-reading assignments. The information clicked into my memory where it developed into images I could pull out when needed. For example, during an exam I could “see” the answers. When I closed my eyes I could see the page in the text book, see the paragraph, and then the sentence that held the answer to the question. To this day I can still do that.
The most difficult task was navigating the halls. Students were everywhere, walking to their futures and unknowingly stepping in the way of mine. All around me was a sea of bouncing blurry people, a spectacle of confusion yet; I was determined to make it work.

Carrying my backpack was a big challenge. I tried carrying it with my free hand but that only made things worse. I tried wearing it on my back but that made the way I had to lean forward much worse. My strategy: I built a contraption using a luggage carrier on wheels and attached my backpack to it with a bungee cord. I could wheel it using the hand I had free. The backpack invention was a success. Quite the sight I’m sure but I didn’t care. Having the backpack on wheels in one hand, my cane in the other, the big test was putting it to work at school. I continued my walks with my head down watching the floor, body bent forward, with occasional tiny glances up, I found a reduction in my wobbling this way and that. So, I pulled my wheels and like a salmon, pushed my way up a stream of students: In a nice way.

What I found fascinating was how fasted I walked. The faster I walked the better I could navigate. Moving slow my body fumbled and bumbled not unlike when learning how to a ride a bike, one wobbles all over the place before mastering the ride.

Sometimes I bumped into students and damn near took dives, but gratefully was caught by those I bumped into. I became known as the one to catch when needed. The more I worked on making it to class, the more I thought about strategies on how to better navigate the collection of obstacles.

My strategy: Having discovered that moving at lightning speed helped, I wondered if I combined it with a stop about every 10 feet or so I might be able to get a better bearing on where I was and how far I had to go. Let the experiment begin. The stop was a task in itself, it set off a series of wobbles and that lovely sensation I was falling. A natural kind of compensation to a lack of balance is walking with the feet spread apart forming a wide stance a bit more than shoulder width. Somehow that helps shift the center of gravity we all need to stand up.
My strategy: When stopping I let go of my wheels, using both hands placed on my cane in front of me between my wide stance I became a human tripod. With three legs came an improved ability to stop, stay still, raise my head and body and settle down the bouncy vision. This strategy was the best of all! The more strategies I came up with, the more confident I became. Perhaps I should have become an engineer!

But wait, there’s more. My strategy: When class schedules worked in my favor, I would set out for class early, often being early enough to relax, chat with the instructor, or review the days work. An early departure meant fewer students in the hallways and less stress for me.

However, one troubling experience remains in locked my memory. One of my stress free departures arrived and preparations began. The classroom was quite a distance away, like getting to a connecting flight where boarding was on the other side of the terminal. Don’t you hate it when that happens?

Becoming accustomed to my ritual, I packed determination in my wheels, grabbed my cane, wound up my fast walk, scheduled stops and took off. Stopping to assess the situation, I found the hall empty with the exception of students sitting on the floor at the very end. I felt nervously intimidated; I was the only person walking towards them. My strategies certainly made me stick out and a nervous one on one strategic interaction made me wobble even more. During my stops I could see the students taking turns looking at me or they were all looking together. I felt like I was under a spotlight. I tried to minimize the situation thinking, should I start dancing or something? In my eyes the hall appeared extended far beyond its real end. Like in a scary movie, I couldn’t get anywhere; it just kept getting longer and longer. Of course, that really wasn’t true.

Passing by the students it was like I were a zoo animal on display. With the students looking at me through a barrier of disregard, they were sharing comments; how strange I was, how weird it was to watch me, how I made them feel creepy. I turned the corner with a punch in my gut ashamed of what I had become. Then I got angry. I was not going to let them get away with their lack of respect.

I turned back around the corner and in full disability glory, like a seasoned professor, I began a lecture. I explained to them that not only was it difficult to be taking on the challenges of life with a disability I found their hurtful comments nothing short of bullying. I explained that just as they were, I was there to learn. I explained to them their actions made me feel ashamed of myself. I explained that making fun of a person disability, or not, is hurtful, confidence busting, and seriously childlike. They all stared at me and with big sorry eyes, apologized. Before I turned the corner I looked at them and from the heart I shared that I hope none of them ever have to endure disability, that it in an instant it could happen to them. With heartfelt compassion, I wanted to them to think about how they would feel if ever they experienced disability disrespect or disrespect in any other manner. Then I left, and even by confronting those students, I made my way to class, found it as empty as I felt, and sobbed.

Posted in Acceptance, Aminoglycosides, Appreciation, Biomedical Research, Clinical Research, Disability, Disability and Opportunity, Discovery, Gentamicin, Indentity, Inspiration, Mitch Tyler, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Paul Bach-y-Rita, Rehabilitation, Resilience, Self Help, Spirit, Subject Zero, Transition, trauma, Vestibular System, Yuri Danilov | Tagged , , , , , , , , , , , , , , , | 4 Comments

Appreciation

CHAPTER 18
Appreciation

     With encouragement from Mitch my fear of regression began to fade. What I had to do

was settle into the wait when the research could resume. In the meantime I continued my

studies at MATC keeping my eye on the prize – transferring to UW-Madison for that

counseling degree.

 

Back at MATC I painstakingly kept up with exhausting hours of studying, writing

papers, preparing for exams, all with the help of that trusty made up ruler I developed and

the support I received from the Disability Resource Center. For the first time since the

ototoxicity took over my life, I felt perhaps, just maybe, I might find a way to make my life

work. Still I struggled with convincing myself that I could really do that; I still felt the fear

disability would be the only thing I could do, research success or not.

 

Then the note appeared: I still believe it was a divine sprinkle of hope for me to catch. I

was sitting at my kitchen table drinking a cup of coffee, wallowing in self pity as I stared

out the window. There was a note pad on the table staring at me and out of nowhere I

began to write. I had no inclination for writing anything and certainly nothing positive, the

words simply appeared:

 

     I often think, why did this happen to me? Why have I been

pushed into this condition? What did I do to deserve this?” I’ve

thought about this for a long time and you know what? There

are no answers to these questions. It is as it is and I have to

learn how to live with it. I must accept it. For if I don’t, I’ll miss

out on the many remaining beautiful things my life has yet to

offer.

 

Yes, I have to do things differently. I have to look at things

differently. I won’t be able to do some things as well as before,

but I have to try.

 

Losing something so precious, so secure, a life balanced with

the world, has forced me to observe things as they really are.

Many things look so different now – there is so much I hadn’t

noticed before. I am surrounded by awareness unexplained. I

feel more, appreciate more, and I love more. I’m discovering

things about myself I never knew existed. It feels good to

approach it as if living a new adventure each day. Many of these

adventures will lead to frustration, anger, sadness and fear. But

as I face each of these roadblocks I need to be open to learn

about them. How I do it will raise awareness about me, my

feelings, my spirit, my heart and my thoughts. Being faced with

frustration will teach me how to be inventive. Anger will teach

me relationships with myself, people, and society. Sadness will

teach me to feel, it will fill me with compassion. Fear has

already formed my impression of strength and endurance.

When I combine these, how can I not succeed in living like I

never have before? I’m still me, “just in a different skin”.

 

I need to learn to love my new self and stand proud to be me.

I need to continue to live as I am. “Disability” is just a word – the

only disability is in my mind and what I allow it tell me. I have

to present myself to others as I do to myself, whole in heart,

mind and spirit. For others will overlook my “flaw” and see a

person, a friend, a mother, a sister, a daughter, a co-worker, a

loving, happy and giving person. I want to be unique,

inspirational, motivational and respected.

 

I want the world to see that I can do anything I want to. I can

succeed, I can learn. Most of all I can live and love doing it. I

want to teach others that each of us has the will and ways to

beat adversity to turn life changing experiences into the most

incredible experience of their life. It all begins with acceptance.

From there on, there are absolutely no limitations to what I can

do. I will do things as I always have. If there are things I

struggle with because of my change, then it’s up to me to be

creative to meet the change in myself.

 

There will be things I just cannot find a way to change, they

just can’t be. Those are the ones I need to accept. I should rejoice

in that I once had the opportunity to experience them. Memories

are like photographs; I can bring them out any time and re-live

the joys they brought me. Most importantly, bring the strength

of my experiences into my life right now. Those experiences are

filled with skills that will serve as my foundation upon which my

creation of a new life will be set.

 

Each change I make will burst into meaningful satisfaction

and pride knowing I did it. This will build my strength and

endurance to keep going, keep learning, to keep trying and keep

living.

 

Appreciation – you know, it makes me sad to think for many

people there lacks an appreciation for the abundance they are

blessed to have. Many are blind to gratefulness. I have learned

to never take anything for granted again. Appreciate all you

have and all that is yet to come.

 

Confidence is probably the hardest thing to learn. Confidence

is intimidating. I have to be out in the world, seen, heard and

watched. I need to love myself in order to be confident. This,

again, begins with acceptance.

 

Bad days, man do I hate the bad days. These are the days that

make me feel helpless and stop me dead in my tracks. These are

the days that squeeze me into feeling alone. I feel there is no one

anywhere on the face of this earth that can possibly understand

what I am going through. But that’s where I’m wrong. There are

others out there just like me who feel the same pain and sorrow.

I’ve learned that without bad days I can’t appreciate the good

days. Through appreciation maybe the bad days won’t be so

bad. Perhaps I can turn a bad day one into a good day by –

appreciation.

 

I read somewhere a quote “Laughter and tears are both

responses to frustration and exhaustion. I myself prefer to

laugh, since there is less cleaning up to do afterward.” I’ve

learned that where there are tears, there is sadness. Where there

is laughter, there is hope.

 

There are two ways to relate to adversity. One is to withdraw

and enclose yourself in constant pain and bitterness. The other

is to pick yourself up and continue your life journey with a new

direction, take detour. Change can be a wonderful thing if you

let it. I’m in a “new life” now. I must make the best of it. When I

am out, I must stand tall and proud. I must smile, laugh, and be

as I always have been. People will then overlook whatever is

“different” about me. I have to remember, it is true, God does not

give you anything you can’t handle. Look people right in the eye

and demonstrate how wonderful life is.

 

With this sprinkle of hope came a liberating change. It helped me realize I had put so

much attention and energy into what was wrong with me, of trying to make it through one

more day of transformational pain, that I couldn’t see a hopeful day was rising on the

horizon. It was here that I realized how meaningful it was to appreciate me. This is where I

began shoving self pity down the drain. I set out to kill that controlling beast that was

holding me in a dominion of believing I couldn’t do shit with my life. The more I shoved

the beast away, the harder I worked to push it down the drain, the more I pushed it down

the drain, the more I let the garbage disposal eat it away. I let go of how the beast was

controlling me. I blossomed into understanding that I was in control of the beast. Oh, how

liberating that was.

Posted in Acceptance, Aminoglycosides, Appreciation, Biomedical Research, Clinical Research, Disability, Discovery, Gentamicin, Inspiration, Institutional Review Board, Mitch Tyler, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Paul Bach-y-Rita, paying attention, Perception, Pity Party Over, Rehabilitation, Research, resilence, Self Help, Sensory Substitution, Subject Zero, The Noise of Disability, Tongue Display Unit, Transition, trauma, Understanding Disability, University of Wisconsin-Madison, Vestibular System, Vocational Rehabilitation, Yuri Danilov | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Oh my God, what did we do???

Chapter 17

Oh my God, what did we do!!!

That first 20 minute trial astonished all of us. It was a day I will

never forget! I wanted to use the TDU every single day. I wanted my brain to

change; I wanted to change my brain! Yet again, another wait settled in. There

was work to be done; setting up a customized lab, design a protocol for testing on

others, pull in more funding, and gather everything we needed to move forward. I

fell into a wishing massive anticipation for the day I would be back in the lab for

more 20 minute miracles. The wait was torture!

I shared my excitement of the 20 minute result with my family, they

were so excited for me. But SFB (the guy I was seeing and mentioned earlier)

maintained his aloof attitude about the struggles I was having and even with my

exciting news he was without any supportive or excited reaction. I believe his idea

of reaction was that attention should be on him. Whoops, I digress… but hey, it’s

the truth.

Then the day after the TDU 20 minute discovery took a turn, I fell into

a physical and emotional mess. The turn shook me into a state of shock that scared

the hell out of me. Everything about my lack of balance was amplified; everything

was back to the way it was before I began the research, only worse. I began to

think that the 20 minutes on the TDU turned my brain into mush, that it removed a

piece. My fear was so great that I called Mitch and with tears mixed with words I

described what was going on. Mitch, in his gentle way, calmed me down.

Together we talked it through and established that I wasn’t any worse but rather I

was experiencing a comparison. We discussed how the 20 minute discovery

caused my brain and body to experience a huge positive difference in my abilities

increasing my sense of relief much deeper than the results I achieved with the 10

minute trials. Mitch and I figured out that my return to how I was before the trails

jettisoned me to a perceived amplified state of regression. Still, it took quite a

while for Mitch to convince me even though we talked through; I was going to be

okay, that I would adjust to what I was feeling and not to worry.

Mitch was right. I did adjust and my fear of a setback did lighten up,

after all I had plenty of practice with the way I was before the research. Mitch

promised me when everything was in place the trials would resume and I would be

back to the lab using the 20 minute approach frequently and investigate the effects

it had on the residual. Perhaps we might even produce a consistent residual result

that would grow, that the TDU would make my brain change itself and

re-wire the damaged me, or, was it me that was changing my brain?

Posted in Acceptance, Aminoglycosides, Biomedical Research, Clinical Research, Disability, Discovery, Gentamicin, Identity, Independent Living, Inspiration, Mitch Tyler, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Paul Bach-y-Rita, paying attention, Perception, Rehabilitation, Research, resilence, Self Help, Sensory Substitution, Spirit, Subject Zero, Tongue Display Unit, Transition, trauma, University of Wisconsin-Madison, Vestibular System, Yuri Danilov | Leave a comment

So, What If… 2003

Chapter 16
So, what if… 2003

               The sitting trials continued in increments of 100, 200, and 300 seconds. 300

seconds is 5 minutes. The results continually produced great success so Yuri took it step

further and extended the time to 10 minutes. With this step my ability to keep my body

still and centered soared to a much higher level. Not only that, the residual effect amplified

and lasted longer, I could even stand with my eyes closed, without the TDU in my mouth!

This was a feat all its own because if my eyes were closed (or if I were in the dark) my

ability to discern what was up or down using vertical lines disappeared and I would fall

apart or rather fall down. Surprisingly, after using the TDU for the 10 minutes, standing

with my eyes closed my body began reconnecting to what I lost, even though I couldn’t see

it. To me, that was a miracle; it certainly took away the tremendous amount of energy I

had to put out just to stand up, eyes open or closed.

 

What we learned from the 10 minute trials were so exciting that a gathering of

people showed up to watch as I confirmed the results. Dr. Mark Pyle, an otolaryngologist

affiliated with the UW Hospital and Clinics, consultant for the research, and also my

doctor, arrived to see the results. (An otolaryngologist specializes in the care of troubles in

ears, nose and throat). My son, Kris came to witness the results. Lots of people were there,

Yuri, and Mitch who had a hand in developing the device, and of course Paul was there.

Everyone was amazed; especially me. With each residual I felt closer to a balanced world,

if only for a little while. However, there was something else rising in me. There was an

emergent sense of change beyond what the research was looking for. Something else was

happening. It was some kind of transformation. It was beyond my comprehension and I

wasn’t able to put my finger on it, only a feeling of a slow introduction to something bigger

than a return to balance. I kept this to myself and continued displaying what the TDU

could do; I continued to follow instructions and the tasks I was given.

 

During the time our successful clinical trials were documented and confirmed the

TDU needed to be patented and licensed with the University Wisconsin Alumni Research

Foundation, or WARF. This is a process for any successful research that involved the use

of federal funding, which our research was. What WARF does is steward the cycle of

research, discovery, commercialization and investment for the University of Wisconsin. It

is the designated patent management organization for the University of Wisconsin–

Madison. WARF also provides, free of charge, patenting and licensing services for

inventions, copyrights and other intellectual property that has the potential to be

commercially developed. The patent belongs to WARF, however, the work continues in an

approach determined by the researchers.

 

With the WARF submission in, we continued trials using our own approach still at

the lab on campus. At the same time, search for a location was launched to shift the

research from the UW campus and continue it in a way determined by our group. A

location was found and Paul formed a company naming it “Wicab”, in honor of his wife’s

family name meaning “lover of honey”.

 

My demonstrations using the TDU became a method to search for funds to

support the research. Yuri and Mitch traveled to various seminars and scientific trade

shows to increase its visibility. Grants were written and invitations were extended to

various organizations all over the US and beyond to witness what Yuri later described as a

miracle.

 

Paul, Mitch and Yuri wanted others in areas of neurology, otolaryngology,

physiology, and more, to see me demonstrate the power of the TDU hoping it would

connect us to a source of funding to move the research forward expanding trials to others

with vestibular loss. At this time I was a member of a support group called “Wobblers

Anonymous”. This group provides support to hundreds of others whose vestibular system

had been destroyed by use of gentamicin, hundreds… I was fortunate to have found this

group; it helped find peace and understanding of the place I was put in, and, how I could

adjust. Through this group I was able to locate others who might be interested in joining

the study.

 

Paul, Yuri and Mitch worked tirelessly writing a grant to the National Institute of

Health or NIH, a grant that would take the research to massive expansion. Mitch took on

the task of completing most of the grant applications and with each and every one I

witnessed his relentless and determined dedication to attain any and all support we could

find. To this day I’ve never seen anyone work so hard believing in something so strongly.

 

As grant applications were being submitted there were also invitations extended to

potential partners. There were many discussions about the TDU and the clinical proof as I

demonstrated the results. We were looking for a way to bring in money. During this time a

CEO with connections, and who put up his own money, came into the picture as the

research continued. However, Paul was still in dire need of locating more funding and at

this point began reaching out to people he knew outside scientific fields. Paul was a

graduate of the Bronx High School of Science from which many of his fellow graduates

went on to successful careers. This is where Bill Angelos came into the picture; a

Hollywood Emmy award winning producer and writer for several years working with well

known actors and singers such as Sammy Davis, Jr., the Carol Burnett show and many

other famous projects. Paul went to school with Bill and thinking Bill would be interested

in the research he might want to invest and partner. What Paul didn’t know was Bill had

left the world of Hollywood fame and commotion and was not in a position financially to

help with funding, but he did know others in his past life that might. Bill made a few calls

and delivered $50,000. Beyond that, it turned out Bill continued producing

documentaries and had built up a great deal of knowledge that fit into the research. More

on that later.

 

So, with money in the bank and me on call for demonstrations, we all worked

together to launch a clinically recognized proof of the results from the use of the TDU.

Yuri, Mitch, and Paul conversed about how neuroplasticity was involved, how my brain

was changing because using the TDU was sending a substituted vestibular message to my

brain.

 

One day I received a call to come to the office. I was surprised to be introduced to

a group of individuals from Israel wanting to learn more about the research and observe as

I demonstrated how the TDU was used and witness the residual effect. With me on display

everyone talked about how the brain must be involved. There were speculations of how

and why it worked and a lot of talk about neuroplasticity, again, the brains ability to

change by introducing other pathways to replace those that have been lost. In the context

of neuroplasticity Paul often used an example of how someone who lost their sight used a

cane to connect to the environment around them. The sense of touch from the cane was

the other pathway to feel what’s in front of them. That touch then is how the brain

perceives “sight”.

 

With the group from Israel observing, I demonstrated how the 10 minute trail

changed my ability to re-balance. They also witnessed the residual effect. A lot of

discussion and questions opened up about the TDU, my results, and how and why. I was

asked questions; how it felt, and to describe what I thought was happening to me. I echoed

the words of Paul as the residual began to fade. Then the group from Israel suggested –

what would happen if I stayed on the TDU for 20 minutes? This was quite a challenge to

undertake but I thought what the hell, I’ll do it – We set in motion something we hadn’t

attempted before. I was suddenly in a position proving what the TDU can do but in a new

direction. I’ll be honest; I had reservations that upping the time to 20 minutes, double

what I was use to, standing like a statue wasn’t going to be easy, let alone hold my

attention that long. However, I did it, I was even able to zone out the chatter of those in the

room. When the 20 minutes were up I removed the TDU and found myself experiencing

the same affects as before, but this time it was very different. I stood there quietly in a

state of an amazing presence that previous trials hadn’t touched. I looked at Mitch and

said “something’s different”. Mitch looked worried then calmed as he watched me stand in

a beautiful silence absent of the noise that previously consumed my every thought, I was

absent of the noise of disability.

 

Without saying a word I looked at the corner of the wall in front of me and tilted

my head from side to side. The walls shifted but I saw a considerable reduction of seeing

the room tilt like they did as if on teeter totter. The intensity of the bouncing, blurry mess

of my vision had calmed. I was stunned. I felt a sense of relief throughout my body. I

couldn’t express what I was feeling; there were no words for it, only awe of how I felt. The

Subject Zero had just proved the power of the TDU, changing everything we had done. I

had just demonstrated a major difference how the longer on the TDU increased the

intensity of balance and residual increasing the stillness and silence and had at 10

minutes. It was stunning, amazing, life changing…

 

From that meeting on our trials used 20 minutes as the guideline for using the

TDU in a standing position. With each and every trial a flourishing increase of my balance

returned but also the length of residual time grew stronger and longer! These results were

shared throughout the scientific realm and a series of scientific curiosity exploded. The

research and I suddenly became the center of a series of displays demonstrating proof that

the TDU worked. This set off a spree of local and national attention, written articles,

television coverage, and droves of other researchers and potential investors from all over

wanted to know more. Paul, Mitch and Yuri set off to explain the science behind it, how

my brain was changing, I was proof.

Posted in Aminoglycosides, Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Expressing It, Gentamicin, Identity, Inspiration, Lessons, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Rehabilitation, Research, Self Help, Sensory Substitution, Spirit, Subject Zero, The Noise of Disability, Tongue Display Unit, Transition, trauma, Uncategorized, Vestibular System | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

Hang in There

Hello Everyone,

A quick note to let you all know that I am working on the next chapter.  It’s one that’s taking me longer than I thought it would.  So hang in there, you’ll be seeing something soon.

Thank you all for patience, and your support.  I appreciate that.

Enjoy your day,

Cheryl

 

Posted in Uncategorized | Leave a comment

From Sitting to Standing Strong

Chapter 15
From Sitting to Standing Strong

          Mitch and Yuri, and I continued the trials and I could feel my ability to remain

centered and still improving with each trial. Then something extraordinary took place.

When the TDU was removed from my tongue, my body revealed a residual effect of

centered stillness. The length of the residual corresponded with how long the sensations

were on my tongue – the 100, 200, and 300 second trials. With each increase of time, the

longer the residual, the longer I maintained a still and centered position. This was a

surprising and unexpected discovery!

          I began to sense that my interaction with the TDU was altering my relationship with

an unbalanced world into a balanced one, if only for a short period of time. To me, that

tiny bit of freedom meant everything. For that little bit of time the constant fight I battled

in my world disappeared.

          After what seemed like a million times, I began to feel the challenge of running the

trails in the eyes open/eyes closed sitting position had disappeared, I was bored with it.

After all, I already proved there was a residual effect now I wanted to prove that the same

results would take place while standing. I wanted desperately to try it standing up and

when I mentioned my idea to Mitch I was given me a BIG no, holding strong that is was

not in the protocol… no getting around it or him. So I worked on Yuri. Together we kept at

the sitting trials and each time I proved the same results. I really was bored with the whole

thing. So, I kept begging Yuri to try it standing up. I kept at it, and at it, until one day,

when Mitch wasn’t there, Yuri closed the door to the lab turned to me and said, “Okay, let’s

do it”. See what a little bit, well a lot of “nagging” does to break a man? I was ecstatic that

Yuri took on my challenge!

          With a little adjustment to the height of the TDU (we used a cardboard box, very

scientific, huh?) we let my standing hypothesis begin and… it worked! Yuri and I were

both so excited that we about jumped out of our skin! So, we tried it again and again and

each time it worked! My idea set the stage in proving, sitting or standing, eyes open or eyes

closed, the longer the TDU was in my mouth, the longer the residual – AFTER the TDU

was removed. How cool is that?

          Not long after Yuri and I snuck in few additional standing trials, Mitch opened the

door.  Mitch could tell we were up to no good so I fessed up and told him I just tried using

the TDU while I was standing. I quickly added it was my idea, not Yuri’s, that I was the

instigator. Mitch’s first reaction was a look of sheer terror because as he said,

working around the protocol could screw everything up because we steered off the track,

the reaction Yuri and I expected. I felt a great deal of guilt until Mitch closed the door, eyes

opened wide,rubbing his hands together in anticipation asked, “So… what happened?” I

told him and I thought he was going to faint! The protocol was revised to include a

standing position that though my insistence worked; yet another step into making medical

history.

Posted in Acceptance, Aminoglycosides, Biomedical Research, Clinical Research, Disability, Discovery, Gentamicin, Identity, Inspiration, Institutional Review Board, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, re-educated attention, Rehabilitation, Research, resilence, Sensory Substitution, Spirit, Subject Zero, The Noise of Disability, Thoughts, Tongue Display Unit, Transition, trauma, Uncategorized, Vestibular System | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment