Something’s Different…

            After discovering such a dramatic difference in how my vision and balance cooperated I removed the helmet.  When I could finally find words, I turned to Mitch and whispered, “Mitch, something’s differentI don’t know what’s happened but something is definitely different.”  Mitch, the gentlemen from Israel, and Paul all looked at me in research anticipation of what it was I was experiencing.  It wasn’t just a reconnection to my sense of balance going on, but you could see in my face and my whole body, a major difference in how it looked.  Instead of a weighted down, tired, concentrated and almost plastic like expression, my face lit up, lifted up in expressive joyful brightness.  My body was fully relaxed and beautifully fluid.  It was as if the “weight of the world” was lifted from me, in many ways, it was.

            Still reeling from what the 20 minutes discovered in me, I began to cry, I could not help it, I was overwhelmed with a feeling of relief after so many years of ability and emotion smashed and floundered.  It was like breaking out of chains that bound me to a world of separation to one of pure and direct connection.  It was a magnificent feeling of pure connection of my self with my surroundings.  I became part of everything around me again; I was re-connected to my space in this world.  I felt completely cured.  How does one process that?  How does one express that relief, that joy, that elation?  I simply started running around, moving without thinking about it, noticing things around me in awe of its importance, I wanted to do everything all at once.  I wanted, and did, jump for joy!

            The most impacting feeling I had was that of silence.  The silence of a physical, emotional, psychological, and even cellular peace once interrupted, now restored.  It was so impacting that I believe it was that which held me without words.  I hadn’t felt that silence in over six years and I simply didn’t want to interrupt it.  I wanted to stay with it forever, let it permeate my every cell.  I wanted it to never go away.  The silence removed the heaviness of the world I was carrying on my shoulders and for the first time I felt free, light as a feather, true as a tree.  I could feel the difference throughout my body.  I felt re-aligned, re-set, and reborn.  In many ways, I believe that this was the first time in my whole life I felt such silence, such peace, and a connection to my very inner self that I found beautifully pure. 

            Needless to say the lab took on a major scientific excitement!  Everyone began speaking at once.  A lot of noise… however, in spite of the noise that captured them, I was embraced by such liberation that I paid no attention to their noise.  There were a lot of questions, a lot of “let’s see what she can do”, a lot of paying attention to me with a goal in mind.  I was Subject Zero and under the microscope of attention.  But for me, I was in a place where attention was simply without a goal but rather direct, in the moment, and what I came to realize later, without filters.  And that’s how I wanted to spend this time of discovery.

            I found Paul, we danced.  I could not stay still; I walked briskly throughout the lab and office.  I went outside and was overwhelmed with the magnificence of its energy.  Instead of a stooped over, eyes on the ground stiff stance and walk, I stood tall and firm and placed my gaze upward to a sky of a color blue I’d never noticed before.  Colors exploded with vitality as I found myself surrounded in an environment of vividness I’ve never seen before.  It was simply stunning. 

            I was so energized by relief of the changes I was experiencing that I felt I could run from Middleton, Wisconsin to Maine, and back armed with a lobster dinner.   

            How did this happen?  We didn’t know, no one knew.  We could only speculate that somehow the “brain was being re-wired”.   All I could speculate is, it sure felt good and frankly, I didn’t really care why, I just wanted this beautiful silence to last and last, and last – forever.

Olbrich Gardens 145

Posted in 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 | Tagged , , , , , , , , , , , , , , | Leave a comment

Humpty Dumpty Was Put Back Together Again!

            Beep, beep, beep, beep… a timer interrupted.  I had completed the first ever 20 minute trial using the TDU.   Mitch placed his hand on my shoulder and assisted as we removed the TDU from my tongue and said “Cheryl, how are you doing?”  I slowly opened my eyes and could tell something was different.  It was an invisible something so amazing that at first I could not speak.  All I could do was stand in a silence I’d not felt in over 6 years.  It was unlike any kind of silence I had ever heard or felt.   It wasn’t a sound, it wasn’t a touch, but rather it was a magnificent, all embracing sense of silence and an attention that was so direct that even the tiniest of details were observable and attention only to the present moment was necessary.

I could feel the environment around me; I could sense its importance of being connected with it.   All that was floundering aimlessly externally and internally within me ceased its noise, as if silently suspended.  Misplaced segments of my wholeness had harmoniously found their way back to a cooperative note of the beautiful instrument called connection.  I was reunited with all that had gone haywire through the loss of vestibular function.  It was as if Humpty Dumpty had been put back together again!

Still standing in the same place when the beep interrupted, I removed the helmet.  I felt myself taller, firmer to the ground, I could sense the ground!  I knew exactly where I was in the space of my environment, however, it went further than that, I had been placed back together as an actual part of my environment, the surroundings on which I was standing.   My every perceptual and proprioceptive sense were once again holding hands and working together. 

Those 20 minutes were like 20 hours of complete stillness and silence condensed.  Even though I could “hear” the chatter of those in the room, I wasn’t listening; they were only there, as if part of the experience.  I didn’t pay attention to them, only to the experience I was encapsulated in.

With the 20 minutes up, at first it was as if waking from a dream, I heard nothing, literally nothing, not even thought.  It wasn’t until Mitch and others began to ask questions that I found myself returned to the place from which I started; only the place was completely different.  I remember tilting my head from shoulder to shoulder while looking at a corner of a wall.  I don’t know why this was my first action, but I felt I had to do this to see if there was any difference in the intensity of my oscillopsia (the bouncy-blurry vision).  A strange effect I experienced being without balance and having oscillopsia is that if I were to stand, or sit, and look into my surroundings, tilt my head from side to side, what I perceived was that everything looked as if it were tilting, as if the world was on a teeter totter, it would tilt back and forth horizontally.  If I nodded my head up and down, the same effect would happen vertically only with a shaking up and down motion.   But this time, the walls of the room remained still.  Yet, what was truly astounding to me was that I didn’t feel, or even sense a movement in my body.  Before my perception of things bouncing and blurring in my line of vision would cause me to stumble, loose my balance and even fall to the ground.  What I experienced in this trial was monumental to me because the constant battle I had been fighting between no sense of balance and the oscillopsia, made it impossible for me to feel grounded, connected.  Now, looking at that wall while tilting my head, seeing it stay literally as firm as it really does, I did not move with it.  I was rock solid in my sight, my stance and in my balance.  I felt cured.

It was here that I began to cry… and began to understand how important this discovery was going to be in my life.  And, it was the beginning of many joyful customary dances with Paul Bach-y-Rita.

 Dancing with Paul

Paul and I dancing after a 20 minute trial

Posted in Aminoglycosides, Beginnings, Biomedical Research, Clinical Research, Disability, Discovery, Gentamicin, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Transition, Vestibular System | Tagged , , , , , , , , , , , , , , , , | 1 Comment

Exclamations, Grants, Money, and Move

            After our amazing discovery, the lab exploded into a flurry of electrified activity!   We invited my doctor and collaborator on the project, Dr. Mark Pyle, to come and see for himself what we discovered.  Within a few days, Dr. Pyle, Paul, Mitch and Yuri and even my son Kris gathered together to show and witness the remarkable discovery.   A day I will never, ever forget!   It was also a day that started the research on a path I don’t think any of us ever thought we would be taking. 

            Here’s a video of that day.  You will see Paul Bach-y-Rita, Dr. Pyle, Mitch and my son Kris in the background.  Yuri is standing with me running the trials.  I believe this is the first time we videotaped the amazing differences between my ability to stand with my feet together, eyes closed not using and then using the device.  Simply an amazing event!

 

From this point on there was brainstorming, planning, grants written, and sharing on paper and in person the results I achieved using the TDU.  The good news and the astounding data moved throughout scientific circles.  But the most important activity was the search for funds for Paul to take the next step of forming his own company to expand his work and begin testing the TDU with other individuals who lost their sense of balance.   Paul needed a bigger lab, an office, a place where dedicated time to this remarkable discovery could expand.  Paul needed to be his own company.  It was here Wicab was born.

            Paul Bach-y-Rita named the company Wicab after his wife lovely Esther; it was her maiden name and means “lover of honey”.  To me this was the perfect name because it symbolized the sweetness the TDU brought back into my life…

            After a lot of work, a lot of presentations, a lot of money showed up.  The day came when the door to the new lab and office of Wicab was opened for the first time.  Everyone had their place and specific job to do.  There were the engineers who tirelessly labored to design the TDU into a portable device – people like Ed Fisher, Mike Rosen, Tim Banks, UW-Madison Bio-Medical Engineering students, a lot of behind the scenes talent! 

            I continued with my studies at Madison Technical College and was working towards transferring to the University of Wisconsin-Madison to begin studies for a degree in counseling to help others cope with the transition into acquired disability.   I also continued the study with the TDU going to the new lab whenever I was asked to assist with a presentation of how the device worked, provide a demonstration of me using it, and for interested visitors and potential funders, to witness its miraculous effects. 

Word of the preliminary results we had discovered had traveled like wildfire throughout the scientific community.  There were visitors from many parts of the world, and of course, throughout the United States.  Then, it was a visit from some interested researchers/potential funders/partners from Israel that, once again, changed everything.  Up to now Paul, me, Yuri, and Mitch, had been demonstrating the device while I used it in increasing incremental amounts of time, which showed how the residual would last longer with each increase in the amount of time using the device.  While giving our demonstrations to the gentlemen from Israel, one of them asked “what do think would happen if she (meaning me) would stay on the device for, say, 20 minutes?”  After discussing what if’s and well, me being the very willing Subject Zero, we agreed to give this a try. 

Then I thought to myself, 20 minutes… That’s a long time to stand still – with my eyes closed, could I really do that?  I decided I would never know if I didn’t try.  So, we set everything up, I took a deep breath, placed the helmet on my head, TDU into my mouth, on my tongue, and began the first ever 20 minute trial using the device.  I thought what I already experienced with the device had changed my world, but, what happened next really changed my world and the world of science.

Electrified Head

World of Science

Posted in Beginnings, Biomedical Research, Clinical Research, Disability, Discovery, Gravity, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Physical Therapy, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

I Did It Without Thinking About It!

One morning I got up from bed, went downstairs, started coffee and sat at the kitchen table waiting for the first warm cup of the day.  I gazed out the window searching for signs indicating spring was on its way.  I sat wondering what the day might bring when I realized for the first time since my introduction to disability I had stepped into my day without wondering how I was going to do it!  I didn’t sit at the edge of the bed waiting for the courage to stand up.  I wasn’t held captive by fear of the day.  I just got up.  I recognized a miracle – a milestone in my compensation!  I did it without thinking about it.  I was able to gaze out the window for signs of a new day, a new season, new possibility and opportunity.  That was huge! 

Pretty Little Pink Hearts

I began to wonder what other milestones I had missed.  Simple things that would tell me I was making progress.  Things like getting up and stepping into other areas in my home without mapping it out in my head first.  Things like making dinner, while still holding onto counters, but not thinking about it, just doing it.  Things like getting in and out of the shower through a self designed process, but not thinking about it.   My auto-pilot was beginning to work again!  It suddenly dawned on me how I was the culprit of my noise, how my constant thinking about how to manage my constant everything disability was getting in the way of just being with the silence of what was right in front of me. 

Cherokee, Edna Taylor, Pheasant Branch 064

I began to wonder about the milestones happening every day yet going unnoticed.  The little things that help us step into a bigger and better place, but because we don’t notice them we don’t realize that they even exist.  And, because we don’t realize they exist, we don’t realize our own amazing accomplishments.  The key is to pay attention.  Direct, silent attention.  What a difference…

Curious Look with C

Posted in Acceptance, Beginnings, Disability, Disability Noise, Gentamicin, Inspiration, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Vestibular System | Tagged , , , , , , , , , , , , , , | 1 Comment

Excitement!

            Yuri and I looked at each other and smiled.  I stretched to the very tip of my toes to hug him as hard as I could.  I cried, Yuri held, I think he had some tears too along with a smile that reached the moon.  We knew a major medical discovery had just been made. 

ExplosionAn explosion of discovery!

            Just then Mitch opens the door and sees our joy of discovery and asks in his always quizative voice, “what’s going on in here”?  I was the first to fess up….

            “Mitch, I , ah, I just tried using the TDU while, well… while… standing”….  I saw the blood run from Mitch’s face yet I also saw his investigative mind running wildly in screams of needing to know – what happened.  “Cheryl” Mitch said very seriously, “You know that standing is completely out of the protocol, right?   “Well, yes I do, but, Mitch, I think we need to put it in because… it worked!  Just wait until you see this!!!” 

            Mitch looks to Yuri for confirmation of the great discovery, firmly discusses the naughtiness of what I talked Yuri into doing, and then assessed the possibilities.  It was clear that all together, we had to run another trial to show Mitch exactly what we found – which, as with the sitting trials – provided the same limited balance retention effect after the TDU was removed from my tongue.  I thought Mitch was going to implode with researcher joy!  Mitch was the one who developed the theory that the TDU may alleviate balance problems.  He realized this after the city bus he was riding slid on a wintery road rounding a corner and Mitch fell from his seat.  Mitch, ill with a virus was experiencing the perils of imbalance, which caused him to lose his sense of connection to his environment, and fall out of that seat, much like my world.  For Mitch, in the world of research, his theory had just been proved and reached reality.  The TDU could indeed restore balance! 

           Even though still in the infancy of research, with wide eyed excitement and possibilities streaming from our minds, the very essence of this discovery permeated every nook and cranny of that tiny lab.  It was one of the best “what if” meetings I have ever taken part in.  And yes, the protocol was revised and approved…

            “Now what?” I asked.  “Where do we go from here?”  “I for one cannot wait to tell Paul, my son, my family!”  I could not wait to feel that stillness again.  I could not wait to be embraced in the silence of stillness.  I for one could not wait to have a TDU of my very own…

DSCN8916I had found peace

Posted in Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , , , | Leave a comment

What if….

With the results from the initial trials in, we pondered how, for that small amount of time after using the TDU, the changes in my ability to maintain a balanced position were occurring.  No one knew, but I was certainly enthusiastic to continue additional trials to see what more could happen! 

So far, trials were conducted in a sitting position, but I began feeling a need to do more.  Because of the positive effects I was experiencing, all I could think about was trying the device while… standing.  After all, although difficult, sitting wasn’t as challenging to my whole being as standing was.  I wanted so badly to try it!  Problem was, standing trials were not a part of the original protocol and Mitch and Yuri were very disciplined to sticking with it.  However, that aside, it did not stop me from attempting to convince Yuri to give standing a try, just once, just to see what happens.  I confidently proclaimed a disclaimer holding all parties involved completely harmless of any possible danger or harm to myself or others.  All I knew is that after all the years of being captive to such life altering changes; I just HAD to try it!  The sitting trials made a difference, I felt it, it was visible, and the data proved it.  So, it HAS to work standing, right? 

During a regularly scheduled appointment to complete additional trials, I pleaded with Yuri to please let me try the device standing – please, please, please!  I just knew something amazing would be discovered, I just knew it.  I presented Yuri with the facts; the connections I felt, the way I was stabilizing, the little residuals we had discovered, what if I’m right, and how safe I would be with him at my side.  I saw a twinkle in his eyes as he closed the door, turned to me and said in his strong Russian accent, “okay, let’s do it”.  My heart jumped with excitement and joy!

So, with door closed, in silent researcher whispers, we set the TDU on top a cardboard box to raise it to the now higher level with the construction hat on my head.  Yuri and I looked at each other in experimental keenness, and like two little kids in a candy store, we turned things on and began trial one using the TDU while standing.

In keeping with the exact same standard of the sitting trials, we began without the TDU, eyes open and eyes closed.  This provided us with a documented baseline of abilities, basically, what I was capable of doing and not doing.  Standing without the TDU eyes open was difficult, eyes closed, impossible.  Then, we introduced the TDU.  I placed it on my tongue, dialed in a level of comfortable sensation and we began the trail that changed everything.

When using the device, eyes open, I could stand still, but the magic moment was when I closed my eyes.  Words can barely describe what I experienced that day; there I stood, feet together, arms at my side – perfectly, beautifully, wonderfully still.  Any doubt or fear I had about what was happening to me in that tiny lab in Madison, WI, disappeared.  My heart literally overflowed with hope, my eyes with tears of amazing grace.  It was the first time in over five years that I was embraced with magnificent stillness and connected to the glorious silence that accompanied it.   Little did I know that at that moment I became a part of a circle of discovery that would change my life, and the lives of others, forever.

Zoomed in Purple

Posted in Clinical Research, Disability, Gentamicin, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Uncategorized, Vestibular System | Tagged , , , , , , , , , , , , , , , | 2 Comments

Stay Tuned….

It’s been a little over week since my last post.  However, please know I remain active with my Blog.  I am working on developing and adding sections to share and capture who I am and why this endeavor is so important to me.  I am including associated information that is important to the whole story and gives tribute to all those involved.  It’s a lot of work but, in a word my friend, Alison Bonds Shapiro shared, it will be so worth it in the “beginning”, a word she discusses eloquently in her most recent blog, “Healing into Possibility”.
(http://www.healingintopossibility.com/)

Promise of a new day

            When observed gently, each day a beginning appears.  It could come in the form of something that escaped notice, even though traveled by a hundred or more times, something that causes a silent moment of attentive amazement or inward reflection.  It could be witnessing a lovely spring or summer bloom opening to its first beginning.  It could be dancing along in an unfiltered child’s amazement of their uninhibited world of joy.   It could be considering for the first time the incredible healing power we have within ourselves or realizing just how far we have come since our last beginning.  Our lives are always beginning.

Some day’s I have no idea what to write and I allow myself to be okay with that.  The words most always show up, but when they don’t, I am grateful as it provides direction to gentle attention and rest in quiet reflection; not that I am without something to share.  I wish to share a lot, beginning with attentive and reflective words to share with you, the reader, a story embraced with beautiful silence and endless promise.

Thank you for following me.  Please stayed tuned and in the meantime, may your days be shared with great joy.

Happy

Posted in Beginnings, Disability, Inspiration, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, Self Help | Tagged , , , , , , , | Leave a comment

The Work Begins and Subject Zero is Born

After that first a-maze-ment and monumental day in that tiny lab, I went home and resumed my studies at Madison Area Technical School, now Madison College.  Amid my school work, my tests, classes and exhaustion, I couldn’t stop wondering how the TDU made it so I could “see” to navigate those mazes.  I theorized, I spiritualized, I wondered what would come next.  I had this feeling that I was on the very edge of stepping off into something and somewhere no one has been before.  How very true this turned out to be.

It was months before the actual balance research began so I had time to consider whether or not to go through with it.  I had my moments of doubt, but having had that initial opportunity to learn how the TDU worked and form an acquaintance with it, I couldn’t remove that glimpse of potential it might have for some type of recovery for me.  So, I just went for it, why not, it wasn’t as if there was anything at stake I hadn’t lost all ready!

The lapse in time from my initial acquaintance with the TDU and starting my involvement with the research was due to Paul, Mitch and Yuri developing carefully structured clinical trials that were stringently reviewed, approved, and then monitored by the University of Wisconsin-Madison’s Institutional Review Board or IRB.  It’s important to know that every clinical trial in the United States must be approved and monitored by an Institutional Review Board.  An IRB is an independent committee of physicians, statisticians, community advocates and others whose objective is to ensure that a clinical trial is ethical and the rights of study participants are protected.

An IRB reviews a proposed clinical trial protocol to be certain that the risks involved with individuals participating in a trial are significantly outweighed by the potential benefits.  Federal law also stipulates that all institutions that conduct or support biomedical research involving people as test subjects, must have an IRB that approves and periodically reviews the research projects.  All these regulations and policies sum up to protect subjects in clinical research to ensure that their safety is given the highest priority.  So, learning this definitely calmed any nerves I had about the trials, my safety came first and Paul, Mitch and Yuri took great care to do just that.

The day came when the clinical trials could begin.  I was still very much challenged by my condition and struggled daily trying my best to do the best I could with what I had.   With my cane at my side, feet wide apart, a staggered, stooped over walk, and blurry and bouncy gaze to the floor, I arrived for my first day of research.  In a small room just off the area of that tiny lab we started in, was “area TDU”.  First thing I noticed was the equipment had changed.  Instead of a joystick and a blindfold I was fitted with a green construction helmet that had been modified by carving out holes to reduce its overall weight.

 NYTimes Image

This is the actual helmet and me wearing it.  Photo is from the NY Times.

Inside and at the top of this helmet was attached a small computer board from which wires were attached and connected to a modified version of the TDU.  The computer monitor remained the same.  All of these new parts were wired together – the green helmet, TDU, the monitor, a keyboard, and a desktop computer.

The lab was set up and we were ready for the first trial.  Paul, Mitch and Yuri began testing the TDU on me with a center of attention on hopefully seeing a positive effect on my balance.

The trials were conducted with me sitting on the edge of a chair with my feet together, knees touching, arms crossed and my hands holding my elbows.  This left me in quite an unstable position because without leaning against the back of the chair or having another way to “hold on” I didn’t have a place of spatial reference other than through my butt and feet.  To make it even more challenging I was asked to close my eyes which instantly caused my upper body to begin to wobble and bobble uncontrollably.

In this position I was instructed to place the TDU in my mouth.  I adjusted the sensation to my comfort level and the first series of historic trials began.  These trials were centered around intervals of 100, 200 and 300 seconds, eyes open and eyes closed, with and without the TDU in my mouth.  It was exhausting to go through but it was also incredibly engaging and exciting.

After doing this over and over and over again, came a great discovery; during those short seconds when the TDU was in my mouth, with its sensations on my tongue, my body and my mind became still and… quiet.  Without the TDU in my mouth and/or the disappearance of the sensation, I was unable to control my body and the wobble, bobble movements, and noise, took over again.  This device did indeed make a difference!

Then another great discovery;  after several series of trials using the TDU and the sensations on my tongue, with my eyes closed, and experiencing the stillness, I was asked to remain sitting in my position with my eyes closed after the TDU was taken out of my mouth.  What was revealed was our groundbreaking discovery… a residual effect remained after the TDU and its sensations were taken out of my mouth!  For a short time I was able to remain still and stable!!!

Then we discovered that the longer the TDU was in my mouth, the longer the residual would last!  We were on to something medically foundational and amazing!  But for me, the amazement was that the more I was exposed to the TDU the more I began reconnecting to Cheryl again… to my environment, to my very self.  Very slowly, ever so gently, I was beginning to visualize a journey where a much stronger and awakened Cheryl was waiting.  I am Subject Zero, and I had come alive.

Posted in Biomedical Research, Clinical Research, Disability, Disability Noise, Gentamicin, Inspiration, Institutional Review Board, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , | Leave a comment

A Jettison Back to the Future, 1998-1999

          When I was introduced to my disability I was also introduced to a lot of amazing people, each who had been introduced to the same condition from the same antibiotic as I had been.  That guy really gets around, huh?   To give you an idea of how that guy gets around, here’s a quick statistic from the Virtual Medical Centre (http://www.virtualmedicalcentre.com/diseases/ototoxicity/885);

Around 10% of people taking aminoglycoside antibiotics experience ototoxicity, although up to 33% has also been reported in adult patients, with a 3% chance of that damage being permanent. Generally, ototoxicity occurs more commonly in adults than in children and babies, where the incidence rate is about 2%. Vestibular toxicity from aminoglycosides is documented to occur in as many as 4% of adult patients, and around 2% of patients treated with gentamicin report hearing loss. 

Oh, yea, hearing losses, as well as kidney damage, are other related side effects of ototoxicity.  I am one of the fortunate whose kidneys were not affected but my high frequency hearing was.  There are some people who because of gentamicin ototoxicity, that now require daily kidney dialysis treatment.  Certainly a serious change in lifestyle; who I am kidding – a serious change in life itself!

            Back to the future – I’ve already shared how I jumped on the bandwagon of advocacy and change.  This included staying in touch others through a “Wobbler” email chat room sharing how our lives changed and offering each other a shoulder when needed, which was a lot.  We talked about what could be done to stop what happened to us from happening to others.  I took that part quite seriously, we all did.

These exchanges of support came together after connecting with Lynn Brown, the founder of Wobblers Anonymous.  During my first 4-5 years of living life as a “Wobbler”, Lynn and I shared a passion of supporting, informing and igniting change.  She educated me with a wealth of vestibular related information, people I could contact, and in helping her support the growing number of people finding the Wobbler’s group.  And still today, the numbers continue to grow…

In 1998, when Lynn’s story came to producer’s attention, we shared a spot on a live taping of the Oprah Winfrey Show.  Prior to that, I flew to Lynn’s home in Alabama, my first flight after losing my balance, a very frightening experience in itself.   How I managed this I will never know…  I do recall many tears of fear and absolute terrifying moments of not knowing where I was, trying desperately to navigate around people, to even freezing in fear at the thought of having to get on an escalator.  Thank you to the kind gentleman who saw my predicament, grabbed my suitcase, and held on to me and my cane as we made our way to the top.  Another lesson in asking for accommodations…  as well as feeling compassion from a total stranger.

At Lynn’s home, a camera crew arrived to film Lynn, and several other Wobblers she had invited, to share our stories about the dangers of the antibiotic, gentamicin.  Lynn shared her story candidly, as did everyone there.  It was heart humbling to meet in person others who were experiencing the same life changing effects of ototoxicity.  Very humbling…

Lynn asked me to accompany her to the live taping of the Oprah show in Chicago.  Again, Lynn maintained her candid presence.  Although I played a smaller role I was there and I learned a lot from Lynn and the lights, camera, action experience about telling my story.  Also, I won’t lie, I was nervous – it was OPRAH for heaven’s sake!

Seriously, what Lynn and I shared that day was really important.  Because of Oprah, and her show called “Prescription for Disaster”, with the aim of investigating the tragic side of medications, we were able to inform a lot of people on the risks of gentamicin and its ototoxic side effects.  I was certainly honored that Lynn invited me to join her on the show and will always be grateful to her for that honor.  It was also a thrill to meet Ms. Winfrey!

            In 1999 I accompanied Lynn on a trip to Portland Oregon to take part in vestibular research at the Legacy Health Systems headed by a team of researchers who were working under the supervision of Dr. Owen Black.  This time Lynn and I connected, I believe at O’Hare in Chicago, to travel together – which certainly lessened my fear and anxiety!  Lynn is a former airline stewardess so she’s a seasoned pro at flying!

           The research of Dr. Black delved into the vestibular system and postural control and how ototoxicity and other vestibular conditions affect these areas.  Dr. Black played a major role working with NASA in investigating how space flight affects astronauts, especially how it affected the vestibular system.  Did you know that when astronauts return from space they experience the same type of balance and visual symptoms as those of us with ototoxicity?   Well, they do.

Dr. Black also guided many studies in how aging affects balance and a variety of other vestibular conditions.  His dedication to supporting persons with vestibular dysfunction lead him to being a major influence to founding the Vestibular Disorders Association (VEDA),  http://vestibular.org/.  This Association helps persons understand vestibular disorders, how to cope, and help find support to live life with this disorder.  Sadly, Dr. Black passed away May, 2012 but certainly left a legacy of his own.

            My experience in Portland was really my first experience with the research world, and, being a test subject.  There was a lot of strange and frightening looking equipment that I was either strapped or bound into or held up with a harness.  I underwent tests unlike anything I had ever experienced to assess the damage done to my vestibular system, the visual effects of my oscillopsia, and ocular and postural control.  Here are some photos from that experience:

 Portland Research1 Portland2 Portland3 Portland4 Portland5 Portland6 Portland7 Portland8

            So in 1999, my first bouncy and blurry look into the world of research took place.  I was enthralled, curious, exhausted, but wanted to know more.  How fortunate for me that that opportunity showed up a few years later in a tiny lab in Madison, Wisconsin surrounded by the work of Dr. Paul Bach-y-Rita and his team.  Wow…

Posted in Aminoglycosides, Disability, Gentamicin, Non Fiction, Oscillopsia, Ototoxicity, Perception, Research, Self Help, Vestibular System | Tagged , , , , , , , , , , , , , , , , | 1 Comment

The Maze

The moment had arrived!  It was time to see what this sensory substitution stuff was all about.  Mitch showed me to a seat in front of a computer screen and a metal box with a knob sticking out of the side of it.  There was a long two inch wide computer ribbon attached to the box.  At the end of the ribbon was a small squared area where placed in a 12 x 12 pattern 144 tiny electrodes were set.

 End of TDU Ribbon

Photo from Google Images

Included with this equipment was a joystick like the kind used in an older type video game and, a blindfold.

 JoystickBlindfold

Photos from Google Images

The computer was turned on and a maze appeared on the screen with a place indicator flashing at what I assumed was the entrance to the maze – kind of like a PacMan video game.  Not very scientific looking I thought…

MazePhoto from Google Images

Mitch went on to explain the metal box contraption which I came to know as the “TDU” or Tongue Display Unit.  He explained that by turning the knob on the contraption an increase or decrease of an intensity of a type of non-electrical current would occur from the 144 electrodes at the end of the computer ribbon.  Oh….

Then Mitch asked me to place the end of the ribbon into my mouth and place the electrodes on my tongue.  I’ll admit, I was a bit apprehensive thinking that it was going to be like testing a 9 volt battery with my tongue!  Thankfully, that did not happen, actually, I didn’t feel anything at all.  Then little by little I turned the knob increasing the intensity until I felt a tiny tingle on my tongue, like champagne bubbles.  I giggled and said it tickled!  I played with the intensity for a while to get the sense of how much intensity I needed to feel, and to familiarize myself with how to dial it in just right.

Then Mitch and Yuri explained that the maze on the computer screen was directly programmed to the TDU and that by using the sensations I was going to be feeling on my tongue, I should be able to navigate the maze by moving the joystick according to the sensations I would feel on my tongue!  What?  Really?  I will admit, given my attempts at playing video games, that I am a video game, joy stick challenged individual, so I wasn’t so sure I would be able to navigate any of the maze!  Even so, I couldn’t wait to try this out!

After some training on to how to move the joystick according to what I felt on my tongue, I had my first dance with “sensory substitution”.  As I sat in front of the computer with champagne bubbles tickling my tongue, a computer ribbon hanging out of my mouth, with joystick in my hand and blindfolded, I navigated that maze from start to finish!  I was “seeing” through my tongue!   From the sensations I was feeling on my tongue I was able to move forward – that was a tingle I felt that moved from the center to the front of my tongue.  Turning right was a tingle that moved from the center of my tongue to the right side, turning left was a that tingle from the center to the left side.  Oops, ran into a wall, should’ve turned right!   The left and right tingles helped me navigate around corners!  Going down stairs I felt the tingle move while pulsating from the center to the front of my tongue and to go up I felt a pulsing from front to center.  Amazing, huh?   I worked my way around that maze with only those sensations guiding me until suddenly; there I was, at the end of the course.  Absolutely unbelievable!  I wanted to do it again, and again, and again…  So I couldn’t rely on memory, Mitch and Yuri switched between variations of the maze adding differences to the test and making it more challenging.  Each time I was able to successfully navigate the maze and make it all the way to the end!  I sometimes bumbled coordinating the joystick movements with the sensations on my tongue but to my surprise and sheer delight, I completely made it though those mazes – blindfolded…  I was “seeing” with my tongue!  Seriously, seeing!!!  I took the blindfold off to see the same surprise and sheer delight shining from Paul, Mitch and Yuri.  It was a magical moment.  I should mention here another very important person who was  involved in the invention of the TDU device, Kurt Kaczmarek – an electrical and biomedical engineer and scientist.   He was quite excited to see what just happened too!

Kurt KPhoto from Google Images

For the first time in a very long time I felt some surges of excitement, intrigue, joy and happiness myself.  I had a glimpse that there may indeed be hope for better life, but still, I had to ask, what does this contraption have to do with helping me with my balance?   It was simple said Paul, “We will begin by testing you with the device to see if a sensation you will feel on the center of your tongue can retrain your brain to feel balance again”.  Without hesitation I said, “Okay then, let’s do it”.  At that confirmation, in a tiny lab on the University of Wisconsin-Madison campus there was an overflowing of excitement as all of us, Paul, Mitch, Yuri, Kurt, and I began talking about the balance application and just how and when we would begin the tests.  Here is where I became a researcher and co-investigator of a device that changed my life forever.

Researcher CoatPhoto from Google Images

However, something more happened that day I first tested the TDU.  A very prominent feeling appeared; that of peace and quiet.  For the first time since 1997 I felt reconnected to my environment and for that short time, I heard… silence…

Olbich Gardens 104

Posted in Disability, Disability Noise, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , | Leave a comment