Connecting the “x”

Chapter 14
Connecting the “x”

In spite of the exhausting experience of the last trial, I returned to the lab to outdo the “x”, as well as satisfy my own experimental curiosity.

Understanding how the equipment worked, I put the hat on and began another round with the butt on the edge chair noodle inducing position. Once again I was asked to try and put the “x” in the box and failed. This was disheartening and I thought to myself, what the heck am I doing here? After taking a rest from failure, I went back to sitting in the assigned position but this time, I was asked to place the TDU in my mouth and on my tongue. Already knowing how to adjust the device, I dialed the intensity of the sensation, centered it on my tongue. This time it was different, when my position moved so did the sensation from the center of my tongue. I was blown away with surprise that the accelerometer hat could make the sensations shift with my movement!

Basically the tingling sensation felt the same as with the maze experiment, only now through my movement they were limited to a consistent feeling on five separate areas on my tongue. The main one was the orientating tingle at the center for a point of reference. Two through five were for feeling it move to the left, right, forward or backwards corresponding to which direction I moved. It was explained to me that any change of the sensation of the TDU from the center of my tongue was supposed to trigger me to know that I’m out of center. The idea was to return to the center point.

I was then instructed to return to the assigned position. I looked at Mitch and Yuri asking if they were kidding, did they forget what happens to me when I try that? Nope, they were not kidding and yes they remembered what happens. I fell into an anxious state of mind thinking that I was headed into another wobble, bobble, bing, bang, boom. Yay, I could hardly wait for the torture.

Hanging on to the arms of the chair in that ridiculous position, with a hat on my head, with this tingling on my tongue thing hanging from my mouth, I was asked to let go and let the sensation centered on my tongue keep me still enough to hold the “x” inside the box. Yea, right… Several attempts were over ruled by my usual wobbling mess. Here’s my theory about that; I had become so habituated by my disability that I was in a constant state of mind of how it infected everything in my life, yes, infected, and not just affected. Thoughts continually bombarded me and fed my perception of how my lack of balance would ever allow me to connect with the world again, much less keep that stupid “x” in the box. Sitting there in that silly position, years of accumulated noise screaming in my head, I asked myself just how the hell this TDU contraption would make me feel “normal” again, ever. With all that running around in my thoughts, I was being asked to do something I didn’t believe in anymore but I was looking for any kind of cure and if there was even the slightest chance the TDU would work, I had to keep trying.

I took some deep breaths to relax trusting this research might be the cure I was looking for. It should be easy, right? After all there were only five things I needed to think about, which technically speaking was really only one thing that required my attention, so what was my problem? The problem was letting go of all the sensations I built up over years of constant fearful thought – not something that can easily go away with champagne bubbles tingling on my tongue.

The position I was in tested my infection, I had to trust that what I being asked to do would not hurt me. Sitting there staring at an “x” connected to a theory researchers hoped would come to life, like I was Frankenstein or something. I wasn’t going to let go of the chair until the lightning struck.

Before going into the next trial I decided I would study the movement of the sensations even more – like studying for an exam before going further in class. Once I aced the test, I put my education to use, after all I was the one connected to the TDU much like a pencil to paper to take a test. Given what I strategized, I figured out I had to intently feel as well as listen to what the sensations were telling me to do.

Before I let go I put as much attention as I could into feeling the sensation at the center of my tongue. I was no doubt wobbly but at least this time when the sensation moved I knew what I had to do, bring it back to its centered place. At the beginning I seriously overshot. When that happened I lost connection with the sensations and feeling like the noodle, grabbed the chair to begin again. I was determined to get that damn “x” in the box. So, after becoming a little more intimate with the TDU, I finally figured out that I didn’t need to fling myself back to the center when I felt the sensation move.

I began to relax better and with each trial pay very close attention to what I was feeling on my tongue. When I felt the sensation leave its center position, I knew I had to slowly and bring it back to the center. Understanding my strategy, I was able to find my center and get closer and closer to completing the task of getting that “x” in the box, and hold it there. After trial and error I finally did it, using the sensations on my tongue! It wasn’t a completely still “x”, but I did it! The lab exploded with excitement! We were all amazed at the results and continuing with more trials we found that each time I became better and better at the “x” game with a connection between my movement and the TDU. Here is when I finally understood what the TDU had to do with balance!

For me the best part was when I realized how the attention to what I was doing and feeling quieted the noise in my head. How was that possible? That’s when a light bulb went on – I realized I had discovered something. When I used the TDU with the maze experiment I was paying attention to sensations generated by a computer program dictating my control. I had to follow instructions in an already formed manner that told me what to do. Using the TDU without this dictation, the new method put me in charge, I was the “computer program”, the control came from ME; my movement caused the sensations on my tongue. More importantly was that the sensations centered me which told my body where it was in space, something I hadn’t felt for years. This was the beginning of returning to a centered life.

Posted in Aminoglycosides, Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Gravity, Inspiration, Institutional Review Board, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Research, Resilience, Sensory Substitution, Subject Zero, The Noise of Disability, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , , , , | Leave a comment

Next Step

What’s all this TDU stuff about?

1. What does TDU stand for? Tongue Display Unit
2. What does it do? A person without a working vestibular system cannot sense where they are in space. What the TDU does is relay a pattern of information to the tongue through stimulating sensations establishing a horizontal frame of reference to where the body is in space.

Chapter 13
Next step

It took some time to begin trials with the TDU “live”. By that I mean conducting trials where its sensations on the tongue were introduced as a consistent element in the trials. The wait took until 2002. The live trials synchronized with a protocol to explicitly communicate how the trials were to be conducted. I had no idea how the protocol was determined, what was in it, or how it was going to be used. In my mind I was there as a “subject” without bias or knowledge of what to expect. I was subject blind, guided by Mitch and Yuri as they followed the protocol.

Our work finally reignited and the research continued, or rather, I feel began. Returning to the lab, I found the equipment resembled the same we used during the maze experience, only without the joystick, thank God. However, there was an addition of a new part, a rather strange looking green construction helmet that had several holes and pieces cut out of it. I liked to refer to the helmet as a “hat”. I asked what the hat had to with the TDU. For one, it was a component of the TDU. Then I learned that inside the hat, attached on the top and in the middle, was a built in miniature “accelerometer”, something that worked like a carpenter’s level and could sense movement. The holes in the hat were to reduce the weight of it.

Knowing what the hat was about, I was asked to put it on my head. Mitch and Yuri suggested that I explore how the accelerometer linked to movement of my head and body to get a feel for how it worked. Sitting with my butt against the back of the chair I rested my forearms on its side arms. I experimented with it and discovered that when I moved my head or body forward or backwards an “x” on a monitor in front of me would move in the same directions. The same happened when I moved my head side to side and even in a circle. In addition to the “x” on the monitor was an outline of a little box. I engaged in a process of getting the “x” in the box. I was grounded by the feel of the chair but my shaky head made the “x” wander where it wanted. After a lot of practice I got the hang of it and worked the “x” closer to the box, it was shaky and not really inside of it, but I was I closer. I played this game for a long time again thinking to myself how the equipment in front of me and on my head was supposed to help with balance, it all seemed rather silly to me. I did, however, gain a complete understand how my movements told the accelerometer what to do. One thing accomplished.

After playing with the movement revelation and keeping the hat on, I was asked to scoot up to where my butt was on the edge of the chair, something I avoided like the plague. In that position I was asked to pull my back up as straight as I could, my head aligned with my back and, centered between my shoulders. This certainly was not an easy task, after all from my waist up I was a noodle with a wobbly head. In keeping with the task I was given, I put a grip on the chair and stretched my back upwards as far as I could and tried my best to keep my green hat head centered and still. This was so unnatural and actually put a lot of strain on my muscles because for years my posture was bent forward, wobbling every which way sitting or walking, with my head dangling and bobbing like a bobble head doll. Now that’s attractive, huh?

Working hard to hold the position I was in, I was asked to place my feet flat on the floor and place my knees and legs in a position where they touched each other which added to the strain on my body. To make matters worse, in that position I was told that I would be letting go of my grip on the chair so I could cross my arms and place my hands on my elbows, yea… easier said than done –another layer to the already ridiculously physically demanding position I was in. I was told that in this position my mission was to get the “x” in the box. Okay then… So, with hat on, in the controlled position Mitch and Yuri placed me in, they said – let go. I let go of the chair and within seconds went into a full out wobble, one that began with my head then traveled its way down until from the waist up I wiggled around like the wet noodle I described. It didn’t take long until my upper body drooped forward, with my head hung down to where my chin was just inches from my chest, I instantly went for a grip on the chair. Like I said, the position was ridiculously challenging.
For many years I often found myself in challenging situations that ignited the noodle mode. Each time I instinctively grabbed for whatever I could reach, even people, if I didn’t connect to something, even a touch with my finger on a table, my connection with the wobbly world around me disappeared and I literally felt like I was being sucked into outer space. When I couldn’t find something stable, I went into panic mode and I’d begin to flail about like one of those toys when the bottom was pushed in the character on top would wiggle around. When the button was pushed in all the way the character crumbled down and became a puddle of pieces. I played with one of those when I was I kid, who knew I’d end up copying those kinds of moves!

Luckily, this time in my panic I remembered the side arms of the chair. I gathered my wits about me, with one hand pushed myself off from the edge of the table in front of me where the TDU equipment was, worked my way back to an unsteady upright position, slid my butt back off the edge of the chair to repositioned into my reality. That whole experience scared the crap out of me, and of course that damned “x” went nowhere near the box. This experience knocked me up the side the head trying to connect this nonsense to balance, other than to torture me. After a rest I was asked to return to the agonizing controlled position to give it another try leading to many more tries stretching my noodle to its limit. With each attempt more and more of my vigor disappeared. I was exhausted and we called it a day.

In spite of my body’s reaction to the trials, I felt committed to the cause. I did everything I was asked to do and made suggestions to consider and implement as we continued additional trials. I was well cared for and attention to my well being was apparent yet the major focus of the research was on me getting that damned “x” in the box. My miserable attempts to keep my head and upper body still enough to accomplish the “x” mission were noted and recorded. It was then I began to understand that research is all about proving a theory, and I was the major component to bring their theory to life. It was that day I became a theorized subject of constant examination.

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

Testing the Future

Chapter 12

Testing the Future

 

I was sitting in my backyard reading a text book to boost my knowledge of geology, a very fascinating subject if you ask me. At that time reading was a ridiculously complicated task. Because of my oscillopsia and associated nystagmus (bouncy, blurry vision and inability to focus) my eyes couldn’t track from one line to another. To read I had to sit perfectly still, a task in and of its self. If I didn’t, words appeared to be jumping off the page. I wanted nothing more than to calm this down so I came up with an idea – I devised a very simple makeshift ruler. Using a piece of 8 ½ by 11 paper that I folded in half I covered up what I hadn’t read where just above the top of the paper was one line in full view and full reading access! I still had to sit quietly, but at least I could read. Everything below the top was covered and invisible until I slid the paper down to read the next line. I found this a genius idea and it worked like a charm; the jumping took a hike. A bonus was by focusing only on the line above the top of the paper, what I‘d already read was removed from my attention which made the line of importance stand out. I think I should patent this idea because it really works.

Back to my backyard, reading with my cool new ruler, my telephone rang. I answered it and for the first time ever I heard the voice of Dr. Paul Bach-y-Rita. He was soft spoken yet powerfully bursting with excitement, great optimism, and promise of a new technology he and his team developed at the University of Wisconsin-Madison. He said the technology could help me get my balance back. This was in 2001, the year I was introduced to an innovative device called the TDU. It was then I stepped into the future as Subject Zero.
When Paul’s optimistic, excited, and promising call came in, I was experiencing a similar mind-set of my own. Working with a local Division of Vocational Rehabilitation, I went back to school with a goal of earning a degree in counseling. I wanted to work with others who had transitioned into disability to help them adjust and overcome, like I was really there myself… I thought I had enough experience with disability I could test out of classes required. Turned out I needed to start at a much lower level studying things I had long ago forgotten. Great, back to the basics like geology, english, and math, that meant fractions, I hate fractions.

 
College was much different from when I graduated high school 1976. Heck, I learned how to type on a manual typewriter and there were no such thing as a computer! However, I jumped into classes head first and began studying at MATC, a technical college located in Madison. It was at MATC where I met Beth Bremer and Todd Jones, both blessed with amazing energy of encouragement and guidance. I owe them a lot for helping me pick classes, set up accommodations, and getting me through some difficult adjustments. Thank you my friends.

 
I put the text book down and listened to Paul explain the concepts of the TDU. Paul shared details of how the device produced stimulations on the tongue which facilitated an individual without balance to regain exactly that, balance. I have to admit I was very skeptical as I listened to Paul explain everything, after all, who ever heard about, as Paul described it, “sensory substitution” or “brain plasticity”? I countered Paul’s explanations with questions and disbelief to make sense of what he was explaining. That was when Paul invited me to join his TDU research as a test subject. Absorbing our conversation I pondered his invitation. I came to the conclusion – what the heck, why not try it. What did I have to lose, balance? I lost that a long time ago. If it worked I’d be ecstatic, if it didn’t, I’d remain the same old, same old me. I left no room for hope either; that disappeared long ago too. So, with that what the heck attitude, I agreed to let the tests begin.

 
Going to school at MATC it put me in close proximity to Paul’s lab on the UW campus. I was practiced in driving to MATC, but the drive to the campus was a bit more challenging, well a lot more. There were students walking or running, crossing streets against the red hand, and zipping all about on buses or scooters. There was indeed a whole lot more traffic and much more movement than I was practiced in or use to. I was intrigued and curious about my conversation with Paul so I knew I had to take the chance and face the dilemma of driving to the UW campus to test the device… I had been practicing driving for about two years, mostly short distances and then expanding to MATC. Although difficult, and admittedly concerned, I decided I could take on the wheel and road to try out the device. Back then I kept to wide open country roads driving like Grandpa on a Sunday afternoon road trip. When I reached the end of the quiet back roads, I bucked up for the rest of the trip using highways. That was the only way… I stayed in the right lane just like Grandpa. I did turn off my blinker…

 
Prior to meeting Paul, he put me in touch with Mitch Tyler, one of his research team members. Mitch called me and was so excited that I had agreed to test the device he sounded like he was going to burst through the phone. Mitch gave me detailed information on where to park and where he would meet me, a stone’s throw between a parking ramp and the entrance to the UW Medical Science Center where the research was taking place.
I gave myself a great deal of extra time for my arrival, just in case I ran into problems, and in hopes that I wouldn’t run into anything. I made it to the lab, a milestone for sure!
I was early so I sat in my car for 20 minutes or so before getting out to make my way to the area Mitch said to meet. It was a beautiful day with the sun warmly touching my face which eased how apprehensive I felt. When the door opened there was Mitch with a wide smile overflowing with great excitement. Never before had I met someone so lit up with passion for the work they were doing, described as groundbreaking and would change the world. He was convinced. His amazing attitude, which I continue to admire today, helped ease my apprehension towards whatever it was I was about to experience.

 
To get to the lab Mitch guided me with cane in hand and a wobbling mess, through endless corridors and hallways, to elevators, through doors, and twists and turns. I thought to myself just how the heck I was ever going find my way out of there? With that said, one of the things I learned to help find my way around was to set various points of reference such as colors and shapes in my memory to help me figure out where I had come from, kind of like dropping bread crumbs. On this trek I used an old couch from at least the 70’s covered in a loud flowered pattern, an emergency eye wash area, colors of posters on walls and doors, a giant freezer – of which I didn’t want to know was in it. After all I was in a Medical Science building… Of course at the end of the tests Mitch guided me back to the parking ramp, where I set my points of reference only in reverse.

 
In the lab was Paul, who looked to be a cross between Einstein and Groucho Marx, but in his own handsome way. I listened again to his wonderfully kind and mild mannered voice and witnessed a humble demeanor of greatness. I felt an instant bond with him. Then I met Yuri Danilov, a giant of a man who at first scared the crap out of me. He is really tall and towers over my 5’ 7” frame, and revealed a very serious demeanor. As it would turn out the ideas Yuri and I cultivated led us to becoming cohorts, fellow researchers and theorists, just as I did with Mitch and Paul. Kurt Kazmarek was there, an engineer in the development of the TDU and a total genius. If I missed anyone or confused my recall of who was there, my apology, after all at the time of this writing, this experience happened over 13 years ago.

 
After introductions, Mitch guided me to a seat where in front of me were a computer monitor displaying a maze, a joystick, and a strange looking metal box with a computer like ribbon attached. I wondered, was I to play video games? If so, I had to admit to the team that whatever they had planned, I was completely joystick challenged. Seriously, even with a son who could use one with his hands tied behind his back, I had no idea how to make things do what joysticks make them do. So by admitting my joystick downfall, I was given lessons on how to make one my friend, a very perplexing friend.

 
After several lessons on how to use a joystick, I was asked to navigate the maze displayed on the monitor with a flashing guide pointing the way to escape the madness. It was quite a task since my vision made following the flashing guide quite a challenge. That along with my newly acquired yet shaky joystick skills along with a lot of help from Mitch, I was taught how to use the joystick to correspond with the flashing guide. I worked on using it to make my way through turns going right, then left, then forward and back to more turns left and right. After several attempts I finally got it and made it to the end of the maze. Whew… After this joyful experience I was asked to navigate the maze without any help. This was a cross between nervous fun and frustration, but by golly and with lots of laughter, I did it!

 
With the joystick and maze navigation accomplished, Mitch then introduced the TDU; I’ll try to describe it. There was a computer like ribbon, about the width of a quarter where at the end of the ribbon were golden dots. The other end of the ribbon was attached to the metal box. On the top of the metal box contraption was a pad of numbers that looked like they came from an old time telephone. It had a couple of knobs on the side. I was asked to place the end of the ribbon with the golden dots on my tongue. That was just weird but I went with it. It was explained what the knobs on the metal box were about; to control a sensation I would feel on my tongue. Now, that was very weird.

 
A peek of one of the original TDU’s
First TDU
Image from Google Images located March 2014

 
The next step was a little practice, some very strange practice. I learned the purpose of the knobs and their connection to the golden dots and how the TDU was connected to the golden dots. With the golden dots on my tongue I was asked to turn the knobs to a place where I felt a sensation on my tongue, which later I came to describe as feeling like champagne bubbles. As instructed, I turned the knobs, the golden dots came to life and I dialed in a comfortable “buzz” on my tongue. I was completely flabbergasted by what I was experiencing. Then, being dialed in, I was I asked to navigate a completely different maze from my earlier practice, using the sensations I felt on my tongue. Okay then… The sensations move solidly in different patterns: middle to left to turn left, middle to right to turn right, middle to tip to go forward. I was asked to put together my movement of the joystick with the sensations on my tongue as I just described. Using this method I was asked to once again navigate my way through the maze. So with champagne bubbles on my tongue and joystick in hand, I set off on my first TDU experience using sensations on my tongue to make it from point A to point B. Crazy but true, and, I did it.

 
Next, additional sensations on my tongue were introduced, a pulsing from the middle of my tongue to the tip indicating steps going down and a pulsing from middle to back indicating steps going up. A lot to remember but okay then, let’s give it a try with a new maze that had steps in it. More tries but I did it.

 
Now came the really startling ask, to complete a trek through the maze using the sensations felt on my tongue but this time blindfolded. I looked at the team, they had to be kidding. Really, blindfolded? Using only the sensations on my tongue? I was convinced I would never accomplish this but seeing as I had come this far, I figured I may as well try it. Again a completely different maze was introduced to eliminate any memory I may have acquired from using the prior mazes. With blindfold on, not a peek to be had, and the TDU sensations on my tongue, joystick in hand, I slowly, with a few do over’s, paid close attention as I interpreted the sensations on my tongue to my movement of the joystick to reach the end of the maze. Unbelievably – I did it.

 
My first TDU experiment ended. The next step started an astonishing progression of results that I never in a million years ever thought would happen to me.

 

For more information on the birth of the TDU for balance, here’s an article about the work of Paul and his team from an issue of “On Wisconsin”, a UW Madison’s Alumni publication. http://www.uwalumni.com/home/onwisconsin/archives/spring2007/balancingact.aspx

Posted in Aminoglycosides, Biomedical Research, Clinical Research, Disability, Gentamicin, Inspiration, Institutional Review Board, Lessons, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Physical Therapy, Rehabilitation, Research, Self Help, Sensory Substitution, Subject Zero, Tongue Display Unit, Transition, trauma, Vestibular System, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , , , | Leave a comment

I interrupt this chronicle for an important message from 1998-99

Chapter 11

ImageImage from Google Images 3-27-14

I interrupt this chronicle for an important message from 1998-99

I would be remiss if I didn’t include this information into my story.

       When I was introduced to my crazy wobbling, bouncing, and blurry world, I was introduced to lot of amazing people, each who were battling their own nightmare of vestibular loss, from the same antibiotic as I.

        With a fire in my soul I set out on a search for answers, what to do next. I wanted be on a bandwagon of advocacy and change. This happened when I stumbled upon (pun intended) an online support group called “Wobblers Anonymous”. I found a chat room where others shared how their lives had changed, ideas for compensation, how difficult it was, and a place to find consolation on a shoulder when needed, which was a lot.

       It was this support group that connected me to Lynn Brown, a former airline stewardess and founder of Wobblers Anonymous. When I found the site I couldn’t wait to speak with Lynn and learn more – our first phone conversation lasted more than three hours! During my initial years 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 how to help support the growing number of people finding the Wobbler’s group. Sadly, still today those numbers continue to grow…

       Through Wobbler’s Anonymous I came to know others in Wisconsin who developed ototoxicity from the use of gentamicin. I was shocked to know there were so many… I learned that then Congresswoman Tammy Baldwin was holding a town hall meeting near my home. An idea struck me; why not gather those of us who were in a close proximity to stand with me at the meeting to share our stories and physically show how dangerous gentamicin can be. I contacted those near me and found an amazing show of support and a plan began to take form. To be sure our information wouldn’t be met by just words, I prepared a fact sheet to leave with Congresswoman Baldwin and for the Wobbler’s who accompanied me to the meeting to use in their continued advocacy efforts

       Prior to all of us meeting my friend Linde came to my home to assist getting things ready. She helped prepare food, drinks, and set up tables and also stood by to be sure everyone had what they needed. Linde’s support meant a lot to me, and still today she is there when I need her.

       After a meet and greet and light meal, everyone who came piled into a couple of cars, with someone not a Wobbler driving, to Congresswoman Baldwin’s town hall meeting. It was great to see so many of us fill chairs. When it came time to voice concerns in my district, I stood up to share my story as did the others. We stood in solidarity voicing our concerns and the right to ask for an investigation into administrating gentamicin outside the limits which the FDA clearly established. So, this set the ball rolling and with other contacts established, through friends with connections, past co-workers, and government officials. I kept at it and finally our stories and concerns reached then Secretary of Health and Human Services, formally Wisconsin Governor, Tommy Thompson. I accomplished this through a lengthy meeting with Governor Thomson’s wife, Sue Ann Thompson, the founder of the Well Woman’s program based in Madison, WI. That spurred some action, but still it took a long time. At least the powers that be were introduced to our nightmare due to serious side effects that can occur using gentamicin to treat bacterial infections. It was hoped that our efforts would ignite a trickledown effect for education on the proper use of this antibiotic. At least in the hospital I was treated I found changes. Not sure if this was because of my case or the power of standing up to the big guys.

       In 1998, Lynn’s story came to the attention of a producer from the Oprah Winfrey Show. A few weeks later a film crew showed up at Lynn’s home to tap a segment to be used for Oprah’s show. Prior to the taping, and with Lynn’s help, I flew to her home in Alabama, my first flight after losing my balance. This was a truly a frightening experience and how I managed this I will never know… I tried to shake off fear and terrifying moments of getting lost in the terminal as I tried desperately to navigate around people, places and things looking for my gate. In order to see what was in front of me I had to pause, stand as still as I could to determine obstacles to work my way from one place to another. At one point I froze at the bottom of an escalator. A big 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, a wonderful display of compassion from a total stranger.

       Lynn kindly invited me to stay at her home for a few days, prior to and after the camera crew to film the segment. There was a shared excitement when they arrived to film Lynn, and other Wobblers Lynn graciously invited to share their stories about how they too developed ototoxicity from the use of gentamicin. Lynn shared her story beautifully and candidly, as did everyone there. It was humbling and a time filled with my admiration of Lynn and for the first meeting others who experienced the same life changes I had. Very humbling…

       Lynn asked me to accompany her to the live taping of the Oprah show in Chicago where the film from Lynn’s home was shown. Again, Lynn exuded her candid presence as Oprah asked questions. Although I played a much smaller role, I was there and I learned a lot from Lynn and the lights, camera, action experience which later laid a great foundation as I began sharing my own story. I won’t lie, I was nervous – it was OPRAH for heaven’s sake!

       What Lynn and I shared that day is very important. Because of Oprah, and her show called “Prescription for Disaster”, the goal was to examine the tragic side effects of medications; we were able to reach a lot of people to the risks of gentamicin. I was honored that Lynn invited me to join her on the show and will always be grateful to her for that opportunity. It was also a thrill to meet Ms. Winfrey!

        In 1999 Lynn invited me to accompany her on a trip to Portland Oregon to take part in vestibular research at the Legacy Health Systems. Those we met worked under the supervision of Dr. Owen Black, a legend in his research concentrating on the vestibular system and how its loss affects postural control as well as the wide range of other physical and cognitive functioning. It was an honor to meet Dr. Black while in Portland. His presence was powerful.

        To give you an example of how important Dr. Black’s was to research, he led investigations with NASA to examine how space flight affects astronauts when they return to earth. Dr. Black’s focus was on how astronauts return affected their vestibular system. Did you know that when astronauts return from space they experience some of the same balance and visual symptoms as those of us with ototoxicity? Well, they do.

       Dr. Black guided many studies in how aging affects balance and a variety of other vestibular conditions. His dedication to supporting persons with vestibular dysfunction led him be a major influence of founding the Vestibular Disorders Association (VEDA), http://vestibular.org/. The goal of VEDA is to help people understand vestibular disorders, how to cope, assist them finding resources and provide tips on how to compensate. Sadly, Dr. Black passed away May, 2012 but certainly left a lasting legacy.

        The experience in Portland was my first experience in the research world, as well as becoming a test subject. I was tested on a lot of strange and startling looking equipment that I was strapped in, buckled in, or secured by a harness. I underwent tests unlike anything I had ever experienced with the goal of assessing the damage to my vestibular system, visual effects related to oscillopsia or also known as ocular control, as well as postural control. Here are some photos from that experience:

Image ImageImage  ImageImage Image

So in 1998 my first bouncy, blurry look into the world of research took place. When the tests were finished I was anxious and exhausted, but wanted to know more. Sharing this experience with Lynn ignited a true sense of admiration of her commitment, strength, and concern for others.  I was fortunate that Lynn shared the Portland experience with me. I was able to share with others what she taught me. In future chapters I’ll tell how I tried to give back what she gave me.

With the Portland experience behind me, how was I to know that a few years later in a tiny lab in Madison, Wisconsin an amazing thing would happen. This is where Dr. Paul Bach-y-Rita entered my life. Let’s return to that part of the story… Interruption complete.

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Physical Therapy Begins – 1998

Chapter Ten

Physical Therapy Begins – 1998

It took three agonizing months before a combination of doctor and insurance approved referrals granted me time in physical therapy.  That was late January 1998.  In order to start my balance re-training a baseline was required to establish my current abilities and chart any progress associated with my physical therapy.  This baseline was established in a contraption called “The Balance Master”.  Why it’s called a balance master was outside my comprehension since without a sense of balance, I couldn’t imagine how I could “master” anything!  In spite of my imagination the tests began.

The Balance Master reminded me of days gone by telephone booths, but missing the door to let you in.  It has three walls, one I faced and two sides to the left and right of me.  There are different colors of various shapes painted on the walls and a computer like screen in the facing wall that during the test produced a guiding line of “balance” that I was instructed to look at.  My feet were strategically placed on a raised area on the bottom of the booth. 

 When it was time to enter the booth I did so holding onto a railing and then the walls of the booth.  The physical therapist secured me tightly into a parachute like harness designed to hold me up and save me from crashing to the ground, if in the event should I have any difficulty with remaining in an upright, balanced position.  Here’s a picture of what the Balance Master looks like:

Balance Master

Image from Google Images

After being secured in the harness I was positioned just right and the test began.  The walls of the booth titled front to back and the bottom where my feet had been strategically placed tilted front to back.  Each movement put me into a complete panic and within seconds of the test my legs flew up in the air and I was left dangling and suspended as if my parachute had landed me in a tree.  Tears flowed from my eyes adding yet another layer to feeling of out of control and unsure of anything.  I tearfully begged “Get me out of here.”  My body shook with fear; I was embarrassed I wasn’t able to accomplish something as simple as just standing.   In my panic the physical therapist removed the harness and helped me to a chair where I sat and sobbed.  I was completely overwhelmed with fear and again the true sense of loss seeped into the core of my being.  It was true; I really was experiencing this nightmare, live and in color.

“You can do it Cheryl.  Just take a rest and try again.”  My best friend Linde and now physical therapy coach tried her best to encourage and comfort me.  But as I sat there shaking I just could not find a reason to step back into this newly realized nightmare.  It took some time before the kind and supportive words from my friend and the physical therapist convinced me that I had enough strength to get back up and start again, and again, and again, and again…  Each time the test was run the same fall and tears happened but we tried again.  The baseline was basically a zero. For years it was just that, a series of zeros of trying again and again.  With each zero I realized I would be restarting a journey down a long weary road with detours leading to many attempts of trying again.

In spite of my fears and the agony of constantly wobbling and falling I faithfully attended the three months of physical therapy appointments.  I put on a funny and optimistic attitude, but deep down I fought with a continuous battle of being in limbo between two parallel worlds; my life before and the new life I figured I had to somehow make friends with.  With the first three month round of physical therapy complete there was a three month delay with another referral and approval process to allow another three month round of PT torture.  In those six months of PT the one and only thing that stuck with me was the phrase, “feel your feet”. 

When I completed my final round of PT I didn’t feel much different. While in the thick of it I worked on sitting on a big bouncy rubber ball, working on getting up and down from a sitting and standing position, standing with my eyes open and closed- like I could accomplish that…  I think that the eyes closed was added for a PT laugh… another PT exercise was to make my way through a maze taped to the floor.  PT was so fun – NOT!  I asked my therapist why we couldn’t go outside in the real world and practice there but only received a response that this is the way they had to do their work.  Well, that’s not the way I wanted to do my work.  When my PT time ran out I was sent away still with the phrase “feel your feet” stuck in the head.  That phrase may have helped me feel my feet on the ground but it led to a full out body confusion and conflict of what to do with the rest of my body; the parts that flailed and wobbled every which way to Sunday.  I was a walking bobble head and human puppet push up toy.  Despite the wobbling and collapsing I began my own PT, inside and outside of my home.  I used pieces of wood propped up on a step and tried to stand on it.  I tried imagery using music as I attempted to close my eyes-both of which were not easy tasks and often failed.   I worked on walking around my house without touched points, I tried to be what I used to be before this new life took over.  Then, as I had asked my physical therapist, I decided to go outside, into the real world.  What a sight to behold!  By this time I began to use a cane as a third point of reference to somehow make walking a little easier.  I walked like a drunken fool up and down hills, straight-or rather a zig zag-forward, on even and uneven sidewalks throughout my neighborhood to trying to master my gait.  I even tried walking around in my back yard.  None of these were easy tasks and always left me exhausted.  I heard a rumor going around town that my walks were proof that I was the drunken fool I looked like.  So, in a sinister kind of way, I decided to fuel the rumors by putting a bottle in a brown paper bag and take it on my walks.  I figured that ought to give the town something to talk about! 

I worked on my-self designed PT for a long time finding some sense of self control but mostly I continued to feel trapped in an unfamiliar, unsteady, bouncing, blurring world.  Then I met Dr. Paul Bach-y-Rita…

Posted in Disability, Gentamicin, Identity, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Physical Therapy, Rehabilitation, Research, Resilience, Self Help, Sensory Substitution, The Noise of Disability, Tongue Display Unit, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment

Questions, Confusion, Fear, Discovery

Chapter Nine

Questions, Confusion, Fear, Discovery

          The ride home with Mom was spent in painful silence, but in my head were shouts of fear, anger, confusion and uncertainty.  I sobbed most of the way home.  It was new kind of sob, one that my diagnosis set fire to a grief and longing I’ve never felt before.  I felt tangled and stuck in questions on a search for to what to do next.  These questions were those I never had a reason to ask; after all I was once “normal” so how could my past life experience connect to any answers.  I was stalled in an empty reserve of nothing. 

With my diagnosis clear, I was discharged without a lot of instructions.  However, I was referred to Dr. Mark Pyle, an Otolaryngologist, a renowned specialist of the ear, nose and throat at University of Wisconsin Hospital and Clinics.  Dr. Pyle took over where my diagnosis left off becoming my permanent and long standing physician and the one who became my link to a remarkable man.  Even so, with a newly authenticated diagnosis to what was wrong with me I became a fugitive on the run from the truth.  I tried to run away from the scheme of never being me again and accomplishing the million things my body was never going let me do.  The authenticated diagnosis completely changed my wondering what was wrong with me into a confirmation of what was wrong with me.  This ignited a completely different progression of intensified emotions, fear, shock, anger, and blame.

I slipped into a frightened speculation of what my future held and what I would lose in the future.  I accumulated a vivid comparison between what was stolen from me and what was infused in me.  Obsessed by comparison, I set off a fist fight of dispute between the crazy mixed up bullshit world my life was sentenced to and a dire need for a guide to help me find my way to an unknown destination.

I spent the weeks that followed in a shocked daze.  Everything about me was exhausted.  Not just from dealing with changes in my physical and biological functioning, but from the emotional turmoil my mind was in.  I was continually haunted by what my body used to be able to do and tortured by what it was reduced to. 

I denied what was happening.  I just couldn’t believe it was happening to me.  I ignored the word permanent by putting on a false happy face that nothing was permanent at all.  I was so damn angry for not standing up for myself and the care I needed.  I was so damn angry feeling none of this would have happened if I would’ve had the care I needed for my unmistakable need to heal.  I blamed my inadequate self worth for letting this happen to me and I blamed the medical system for overdosing me.

I was scared.  Not just an uncertainty scared but a deep down feel it in my bones petrified scared.  I was afraid of myself because I didn’t know who I was anymore.  I saw the same person in the mirror but that reflection was as unstable as my walk and as blurry as my bouncing vision.  The person looking back from the mirror wasn’t me, it was a total stranger.

          I had this sense I was in two different places at the same time, like I was two different people.  One who stayed behind in a world that was perfectly aligned to existence, the other floundering in a fog of bitter haziness.  Each thought, step, and movement conflicted with my 39 years of learned behavior – the way it was when I didn’t have to think about it, I just did it.  That disappeared by being overpowered with the overwhelming task of learning all over again.  My whole world became foreign to me and I was an outsider. 

          Even before my diagnosis my home had morphed into an obstacle course.  Amid my loss of balance and unstable vision I struggled my way up and down stairs, past furniture, through hallways and around corners.  It was like training for a marathon!  I stumbled; fell, bumped, and crashed into things and started over and over and over again.  

My home was decorated with things meant to be pleasing to the eye and functional in their purpose.  Now all I saw was a bouncing unrecognizable blur of shapes and color.   

Then I had this sudden realization that within me was a vivid memory of the layout of my home and thought what would happen if I used those memories to reconnect with it.  So, I tried it.  I sat on the couch to get as I still as I could and used my memory to visualize how my home and contents were positioned together.  This self devised approach lessened the exhausting efforts of maneuvering from one place to another, why hadn’t I thought of this before?  I was too preoccupied…  It was then that realized my home was the only safe place I could be, it was the only place familiar to me.

Then as I made my way around the house, I discovered how using touch made me feel a little bit more grounded.  I touched everything I could.  I leaned against the counters to do dishes, to prepare and cook meals.  I touched something while doing everything.  That’s when I first understood how important touch was to me.  Without it, I literally felt as if pulled into outer space and dropped through the floor at the same time.  Without touch I lacked a connection to anything.  I wondered that if a simple touch could convey just a little bit of a connection to my surroundings, perhaps there was a way to feel just a little bit more connected to the stability that my new life forced me to leave behind.

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The Verdict

Chapter Eight

The Verdict

I remember with extreme vividness the exact moment.  In the confines of a hallway that ominous feeling I had from the start exploded:  Ototoxicity, ear poisoning, permanent.  I still see the steel blue color of the doctor’s eyes; I still feel the texture of the wall as I clung to its rough and cold demeanor.  I still sense people that passed by, and taste my tears as I sobbed through words the doctor was saying.  This was where the doctor told me the life I had come to know and related to so well had ended.  There I was told the damage to my vestibular system was permanent.  There I was told I would be living my life without a sense of balance, seeing things bounce and blur with movement, without a grounded feeling of where I was in space, and that “you’ll get used to it, there’s therapy available to help you cope, and I’ll improve as the years go by”.  Then he said, “Most people show great improvement within 20 years20 years

From the moment the word permanent left the doctor’s mouth I felt stabbed by a sword that wounded my very existence.  I was immediately separated from all I had ever come to know and understood about my relationship with the world.  It smashed a fear directly into my soul, a fear I had never experienced before. 

In that one word, I felt the permanency of a sudden physical, biological, emotional, and even cellular change to my very being.  That change swallowed me into an indescribable sense of despair as I clung to that wall paralyzed in fear and uncertainty.  I suddenly became blind to my surroundings, mute to questions and deaf to answers.  The doctor kept speaking but all I heard was “permanent”, all I felt was “permanent”.  I was suffocating as my complete self began to disappear.  It was here that the sinkhole nothingness fully opened up sucked me down.  It was surreal, frightening…dead.

When the doctor finished his presentation he left me standing there, still clinging to the wall with tears streaming down my cheeks.  I was stunned and for a long time I couldn’t move.  The nothing held me captive.  Then I saw the doctor about to enter an exam room not far from where I was.  I had just one thing to say to him; “How dare you tell me what you did in this hallway.  How dare you change my life forever without at least taking me into a private area where I could feel some sense that I mattered.”  He said “Sorry about that, I thought you’d want to know as soon as possible.”  Then he walked away into another exam room and I returned to permanent.

It took forever to surface from where the doctor declared my life sentence.   In a daze I found my way to a hallway where, thankfully, there was a railing to hang on to. I had my first sense of relief that there was something I could hold on to and experienced the first of many attempts not to let anyone in on the discovery.  This was my first experience of trying to hide from disability. 

The railings were just a prop and if I let go, the permanent would take over. They were my only sense of grounding to keep from falling over or sliding off my world as if falling out the door of an imbalanced airplane.  Then, I reached an intersection of hallway where the handrail ran out…  I recall standing there in terror thinking how I was going to get from one side to the other without falling.  That was the beginning of a never-ending loop of intrusive thoughts each time I attempted to move in the world.  It was the first of many mental maps I had to draw to locate blurry bouncing points of reference looking for what I could hang on to as I moved from point A to point B.  It was the start of my movements becoming a constant assignment of starting life over in a new world as I tried to connect my brain, body, and every one of my senses to the environment around me.

I reached the waiting room where the receptionist let me know my Mom had stepped out to the car, she was a smoker.  Instead of waiting for her to come back in, I worked my way out of the clinic to the car.  I just needed to get out of there right then and now.  I fell into the car cloaked in a cloud of confusion, disbelief and a longing for it to all just be a bad dream.  I sat there looking straight ahead with tears streaming down and at a loss for words to describe what had just happened.  Mom asked “Well, what did they tell you?”  I replied, “It’s permanent Mom, there’s nothing that can be done, I have to live this way”…  Mom replied, “There’s nothing, no medicine, no surgery?” “No Mom, nothing….”

Posted in Aminoglycosides, Beginnings, Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Inspiration, Lessons, marginalization, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Resilience, Self Help, Subject Zero, Thoughts, Transition, Vestibular System | Tagged , , , , , , , , , , , , , , , , | Leave a comment