Subject Zero

The Maze

Posted on May 18, 2013 by Cheryl Schiltz Photography

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.

Photo from Google Images

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

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…

Photo 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!

Photo 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.

Photo 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…

Posted in Disability, Disability Noise, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged brainport, cheryl schiltz, gentamicin, Kurt Kaczmarek, madison, Mitchell Tyler, norman doidge, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, University of Wisconsin, wisconsin, Yuir Danilov | Leave a comment

The First Meeting

Posted on May 16, 2013 by Cheryl Schiltz Photography

I met Dr. Paul Bach-y-Rita for the first time on the Spring of 2002, five years after my introduction to disability. I traveled to the UW-Madison’s Medical Sciences building where I was greeted near an entrance by Mitch Tyler, a biomedical engineering researcher working with Paul. From the moment Mitch and I met I knew I was in for an incredible adventure as something almost magical seemed to appear once I saw him, one of those “this is supposed to happen” moments.

Mitch Tyler and the Medical Sciences Building on UW-Madison Campus

Having Mitch meet me at the entrance was a wise decision as navigating to the lab meant having to use elevators, go through several winding hallways and doors making it feel more like a maze than a building. As I had come accustomed to, or rather taught myself to do, I paused to settle my vision to note various landmarks along the way so that with hopes my memory for color and shapes would serve me well so I could find my way out, but more importantly if this thing really worked, back in.

There was an old yet functional loudly patterned sofa, an “eye wash” area, a giant chest freezer that I was afraid to ask what was inside, after all I was in a medical building… I noted posters, and even stopped to see what they were about but mostly attempted to remember colors. I had gotten good at navigating by color…

We arrived at a small lab where we were joined by Dr. Paul Bach-y-Rita, a gregarious yet quiet and humble man whose appearance was a handsome combination of Albert Einstein and Groucho Marx. His face was lit up with an smiling and eye twinkling excitement and promise of what was about to happen in that tiny lab.

Dr. Paul Bach-y-Rita

With Paul was Yuri Danilov, a physiologist from Russia who at first glance upward to his tall height seemed larger than life and rather daunting in presence. I would come to know Yuri as a very kind man.

Yuri Danilov

The lab was filled with equipment, papers, books, notes, computer parts, prototypes, and as I came to learn, the most incredible minds in medical research one could ever have the great fortune of meeting.

The air was dancing with excitement, knowledge, and sheer determination as Paul, Mitch, and Yuri described the work they were doing. “Sensory substitution in theory is replacing one sense with another to get messages to your brain in an alternative way. Re-wiring your brain.” For example, your sense of balance has been destroyed because of the damage the antibiotic gentamicin did to the vestibular system in your inner ears. The messages your brain had received prior to the damage can no longer get to your brain because those signals have been cut off.” They went on to describe what a vestibular system is, what it looks like and how it works and why mine no longer works. It sure would have been nice if I was provided this type of detailed explanations when I was first diagnosed…

Showing me a picture Mitch explained, “The vestibular system is located in the inner ear, in the circular canals that make up your complete inner ear structure. What the vestibular system is made up of are little tiny microscopic hair cells.” Mitch held up one hand wiggling his fingers as they pointed upward, then laying his other hand flat and on top of the tips of his fingers he went on to explain, “on top of the hair cells lies a jello like substance called Otoliths. As you move about in your environment the otoliths “tickle” the hair cells and they move.” Mitch moved the hand he had placed above his wiggling fingers back and forth to simulate movement. “When the otoliths tickle the hair cells a signal that you have made movement is sent to your brain through a nerve called the eighth cranial nerve which interprets your movements, this is what makes us feel in balance. Because the gentamicin killed off your hair cells they are now laying flat and stuck together so they can no longer connect with the otoliths and the signals can no longer reach your brain.”

Image from Google Images

No one had ever really explained this to me in this way and for the first time since I my introduction to disability, I found an understanding of my condition that actually made sense to me. A cloud of confusion lifted and in its place was a ray of hope that went on to brighten a way for a monumental transformation in my recovery.

Posted in Disability, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Understanding Disability, Vestibular System | Tagged brainport, cheryl schiltz, gentamicin, Inner Ear Hair Cells, madison, Mitchell Tyler, norman doidge, Otolith, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, University of Wisconsin, UW Medical Sciences, Yuir Danilov | Leave a comment

Sensory What?

Posted on May 15, 2013 by Cheryl Schiltz Photography

I began my first semester with a small load of classes as I knew from experiences I’ve already had, that exhaustion was a big deal for me. So I spaced my classes strategically throughout the week with days off to allow for rest. Even still, my days began filling up with tasks of college life. I was a very interested and involved learner wanting to grasp everything I could. Reading text books took using a method I came up with of placing rulers above and below the line on the pages of text assigned to be read. Worked pretty good too. Having been out of high school for over 20 years, I really had to brush up on my math, like from the very first stroke… In order to meet the math requirements later in the program, I needed to take remedial math classes where starting from simple addition was the norm. I made it through this well, it was when I arrived to the algebra classes when things became fuzzy… my brain is not a math brain, period. Hence, the need for rest!

On one of the days without a class to attend an amazing event occurred. It was a warm and sunny day and I really felt like being outside. A trip to the back yard was no small feat as it meant getting down the deck stairs around the corner and down a sloped yard to a spot where a lawn chair could sit evenly. After a many attempts, I finally got things set up with stability and settled in for some sunshine on my shoulders. Given my experience at the onset of my disability, I learned to keep the phone with me, just in case, and just as I was letting myself go to the wind, it rang.

“Hello, Cheryl? This is Dr. Paul Bach-y-Rita. I’m a doctor and researcher from the University of Wisconsin- Madison. Your otolaryngologist, Dr. Mark Pyle, gave me your name. May I speak with you a moment?”

I replied, “Sure, but what is this about?”

“We are working on research involving sensory substitution and Dr. Pyle feels you may be a good candidate to help us test a device we are developing for persons who have balance problems called the Tongue Display Unit (TDU). It is a device that captures your movements and takes those movements and displays them as stimulations on your tongue. You see, sensory substitution is taking one sensory connection and replacing it with another so that the message that has been taken away from illness, or in your case, ototoxicity, can be sent to your brain in a new way helping reconnect those senses, or rewire your brain, to so that you can recapture your loss sense of balance”

“Really…” “so, how does that work?” Little did I know at that time I was speaking with a world renowned researcher, physician, teacher, and humanitarian of amazing depth.

“Let’s take vision as an example – we do not see with our eyes, we see with our brain. Our eyes merely capture images and once to the retina, the brain takes over. If a person who has no vision could feel their environment instead of seeing it, those feelings can replace vision and produce “sight” in a new way – feeling sensations instead of seeing things.”

I thought to myself this just can’t be real. How in the world could someone see using their tongue and how would something like that work for someone like me who has lost their sense of balance? It all seemed silly, and well, very futuristically strange.

Paul and I spoke at length about his work and I found that he had been researching sensory substitution since the early 1960’s having had his work recognized by prestigious medical journals and peers. Paul then asked me if I would be interested in coming to Madison to help them test the TDU for balance applications. It took me just a few seconds to say, yes. Why not? What did I have to lose, right? What I didn’t know was that this was just the beginning of what I later would welcome the loss of – the noise of disability….

Posted in Disability, Disability Noise, Gentamicin, Going to college with a disability, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Physical Therapy, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Transition, Vestibular System | Tagged brainport, cheryl schiltz, gentamicin, madison, norman doidge, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, University of Wisconsin | 2 Comments

Real Deal College Classes!

Posted on May 14, 2013 by Cheryl Schiltz Photography

To this day I’m not sure how I learned about Wisconsin’s Division of Vocational Rehabilitation (DVR), only that sometime in 2002 I met someone at a small café in Madison who described to me what DVR is and what they can do to help persons with disability rejoin the workforce. I really wish I could remember who that person was… I owe her a huge thank you!

What I discovered was DVR assists with vocational counseling, providing various services and supplies unique to the person and their employment goal, and even provides financial assistance for college training to obtain that employment goal. What? Really? (By the way, all states have a Division of Vocational Rehabilitation…)

Then I went home. I was driving again at this point, took me 5 years to gain enough confidence to do so and I still took the back roads… Anyway, I went home and that meeting resonated something in me, a need to do something, to become a part of the outside world again, to make a difference somehow… That resonation took a while to ring the bell for me but it did. In 2003 DVR opened a case file for me and I started a whole new set of classes… I had decided that I wanted to go back to school to become a counselor and work with individuals who have transitioned into an acquired disability. I wanted to share my experiences with others to let them know they still have a life ahead of them. My employment goal.

So, there I was at Madison College, wow –my first day of school! I’m in COLLEGE! Forty-three years old and I was in COLLEGE! An unbalanced, wobbly, blurry mixture of excitement and fear (fear taking up the majority of the mix), wiggled through me. Could I really I do this? Is this really real?

Those first unsteady steps into college life were like first steps into kindergarten. It was an unfamiliar, scary, and hugely challenging step. I really was scared and worried. Not so much about my desire of going back to school but more so, an apprehension of the challenges of real deal college classes I was about to discover. It had been a long time since I was in school…. I graduated from high school in 1976 and here it was, 2003, I had stopped the academic part of learning a long time ago…and now I was at the start of beginning to learn about and understand another whole new element of Cheryl. Besides the college courses I was taking, I was also taking a course in me.

Before my classes began, and the halls filled up, I thought it might be a good idea to embark on trial runs on making my way to my classrooms, to work on finding my way around a completely unfamiliar environment. That was really my first class! I’m glad I enrolled myself in that one because when the trial runs stopped the real deal began! I now understand the importance of prerequisites!

I also signed up for a counselor with the college’s Disability Resource Services. There I met my dear friend Todd Jones. Todd was my counselor of all things education and emulated that all things are possible with a disability. When Todd was younger, he endured a life changing car accident which resulted in a spinal cord injury and permanent quadriplegia. When Todd met me in the waiting area and showed me to his office I was amazed at his immediate promising presence. Todd taught me more than I think he he did… He showed me that yes, all things are possible. To this day Todd and I remain close friends and I love him dearly. When you’re with Todd, you see only Todd. There is no wheelchair and no obstacles. He does, however, make quite a statement driving around in his giant red pickup truck! I can barely get into it without a stepstool! But that’s Todd – a do anything kind of guy.

With Todd’s help we arranged accommodations that would support my success in and out of the classroom. One such accommodation was using a tape recorder to tape lectures. This helped tremendously because I could not multitask listening to a lecture and taking copious notes at the same time. I had my own unique form of note taking but for notes that were more specific, I was assigned a note-taker who would do that for me. Accommodations like these allowed me more room to pay attention to what was being said which helped keep me in the moment of learning and away from that unnecessary noise. But it also meant I took two of those classes a day, double the work.

I sat in the front row of every class to stay ahead of movements other students would make. If I didn’t put myself up front, those movements would disorient me to the point of me falling out of my chair, not a pleasant or pretty experience. I was able to request a chair that did not move, some of the lecture rooms had those. Again, movement, even while sitting would throw my perceptions amuck.

Another accommodation I tried was extended exam times and taking exams outside the classroom, in a quiet area. Concentration was a big problem for me so those services helped a lot. As the semester rolled on, I discovered a trick of the trade – earplugs! Using earplugs I could stay in the classroom and take the exams just like everyone else! I couldn’t hear a thing besides the ringing in my ears, another side effect of ototoxicity. My ringing is in the key of G. Oh, and if I needed additional time to finish an exam, I took it in the classroom.

Another supportive service was the Learning Center. Here there was one on one support from instructors on any topic I needed help with. Here is where I met Beth Bremer. Oh my Gosh – this wonderful woman filled me with such support, understanding, motivation and inspiration that I could do nothing but succeed! Like Todd, Beth and I are the best of friends today, she is a definite burst of sunshine and energy! I love her dearly. To both Todd and Beth – thank you, thank you, and thank you.

A little suggestion – If you or someone you know has a disability and is pursuing college, I strongly recommend hooking up with Disability Resource Services. All colleges have one, but, it’s up to the person with a disability to seek out their services, they do not come to you. It’s worth it and you’ll be amazed at the many types of supports, services, equipment, and more that is available to make learning with a disability a grand experience.

So, armed with supports in place and a road map to classrooms, my first semester began by mixing with people everywhere who were moving in and out of their own plans and unknowingly moving in and out of my challenges. Walking through a sea of students was the most difficult. I had my cane in one hand, and my backpack strapped to a luggage carrier on wheels which I pulled along side of me with the other. Once I started moving, there was no stopping me; literally, I couldn’t stop because the momentum I had to put out was like that of a speeding bullet. When I did, I would stop in a jerking, wobbly halt, steady myself with my cane and carrier, straighten my body, head and eyes up from staring at the floor, and with my head shaking from side to side, try to orient myself to where I was. When I found my bearings I would start again until I reached my final destination. I must have had a vibe of sorts because people, well, most, would move out of my way. Those that didn’t threw me off course like a hurricane to a sailboat. Ouch. But really, I know I looked rather strange working my way through those people so those that got out of my way probably did so to avoid contact at all. I don’t blame them, I would’ve too.

My perception was absorbed with that of constantly sensing and anticipating a fall, but I kept going. My sight was filled with a sea of bouncing and blurring feet and people, with walls, floors and doors swirling around a circus of confusion. But I kept going. I also felt the stares, I heard the whispers. But my own whispers held me to my conviction to make this work. I stepped into my first Madison College class and began my quest for higher learning, which as it would turn out, was just the beginning of something incredible on the horizon!

Posted in Acceptance, Accommodations in college, Disability, Disability and Opportunity, Disability Resources, Gentamicin, Going to college with a disability, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Self Help, Transition, Vestibular System, Vocational Rehabilitation | Tagged Beth Bremer, brainport, cheryl schiltz, Disability Resources, gentamicin, Madison College, norman doidge, Oscillopsia, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, Todd Jones, wisconsin | Leave a comment

Understanding DisABILITY

Posted on May 13, 2013 by Cheryl Schiltz Photography

To understand something we usually try to learn as much as we can about it, right? Well, I learned that disability falls into the search for understanding category as well.

The Reading Girl by Magni, National Gallery of Art, Washington, DC

I craved that understanding and enrolled myself into a place to being researcher of my disability and hopefully gain the knowledge of what I needed to make my life easier, more manageable.

I learned that I had to adopt good study habits to delve into the pre-disability me and all those skills I had gained over 39 years. I reviewed old text books of my interests, strengths, skills, experiences, and how I accomplished things back in the “good old days”. What I learned was how important it was to understand my history! That history provided context that I could insert and influence into forging of a new world that fit the way I was after my introduction to disability.

I took a self made class to learn about my disability, intimately. I found myself knowledge hungry to know everything I could about how it really happened – the biology and physiology of it all, how it affected daily functioning, what to expect as time moves on, how it affected me in various situations and environments.

I also found myself becoming aware that not all of the information and methods I was gleaning would be text book to me. I learned the discovery I was embarking on had an additional and unique set of variables – ME. Not everything was going to take ME into consideration. I had to learn how to do that myself.

You might be thinking, how does one go about these courses of studies? Well, I formed my own university where I read medical descriptions, research papers, and checked out what I could find on the internet. I looked for information and began to put into place a clear understanding of exactly what ototoxicity is. I had to take a lot notes and use a ruler to help me keep my place on the pages and a highlighter so I could keep track of what I already learned so I could refer back to it later. I asked a lot of questions to professionals and I listened – with note pad in hand. I experimented on myself with what I could do and what knocked me on my butt. I also enlisted the help of experts, friends and family, I reached out for help. Of course, this all took quite a lot of time because I knew (what I already had discovered about my disability) how important it was to not overwhelm my already overloaded brain.

This led me to another class I enrolled in that taught me to begin to listen closely to my body and brain and really hear them when they said, I’m tired. I tested out when it was time to just stop and allow myself to rest. These were the best teachable moments I gave myself! I cannot express enough how important it is to allow yourself to recognize the tap of rest when your body and brain knocks at your door. I often hid from that door, like I would when solicitors would show up. Then I’d go right back to what I was trying to do which only pushed myself beyond the rest and into exhaustion which only exasperated everything disability. I couldn’t learn a thing that way…

Most importantly, learning all I could about my disability allowed me to learned the value of effectively communicating my needs, ideas for accommodations and compensation, and my strengths in a way that got me what I needed. I raised my hand a lot and called on teachers to help me out.

I located the support group Wobblers Anonymous, where I found one of the best library of resources ever. Every single person in this group was dealing with the exact same things as I was, because of the exact same reason – gentamicin ototoxicity. Some members have lived with this condition for a many, many years. I kept daily correspondence with people and learned more than I perhaps wanted to. There are certain aspects of this disability that are very intimate and personal… However, over time I learned something more about support groups – to be careful where you place yourself in the midst of so many. I believe support groups provide fabulous methods of sharing information and support that is right on track to what one is feeling, because everyone in that group is sharing the same situation. But I also learned to be aware so that you don’t find yourself in a situation where all that is talked about is how bad things are and void of future forward ideas and possibilities. I personally wanted to hear more about the good that is still abundantly there and ready for me. So, I took that on myself and began sharing what I had learned and tried desperately to find specific directions that offered glimpses of hope and methods to compensation. That was sometimes easy, sometimes difficult to find. But here again, I found that discovery was up to me.

I believe that getting to know your disability takes time, especially if acquired through illness, disease, accident, or other means because everything as you know it, changes; your life changes. During the onset stage there may not be a lot of thought about the actual thing that has occurred but rather probably a lot more thought is about why, what now, what will happen to…, I will never… You know what I mean, we’ve all been there. All I could think about was what the heck was going to happen to me, my family, my job, my life. I was consumed by thoughts of never being able to do the things I’ve always done in my daily living and my life. I thought that I’d never be happy again, that I’d be shunned by the world, my friends and my family. I was terrified, depressed, lost. Here’s the thing about the onset stage – it really sucks but it’s really necessary… as with losses that occur in life there’s a grieving process. The onset stage can include grieving; a process that’s absolutely heartbreaking. What I figured out later was that the onset class was one that had to be taken because it set the stage for me to begin to understand my disability and what it means to me. The onset stage? I think it’s a prerequisite to the classes yet to come in one’s own Ivy League university of understanding.

University of Wisconsin Campus – Bascom Hall

Posted in Acceptance, Disability, Gentamicin, Independent Living, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Rehabilitation, Self Help, Transition, Understanding Disability, Vestibular System | Tagged brainport, cheryl schiltz, gentamicin, madison, norman doidge, Oscillopsia, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, United States, University of Wisconsin, wisconsin | 2 Comments

Happy Mothers Day

Posted on May 12, 2013 by Cheryl Schiltz Photography

This is my Mother, Mary Lou Witte

Isn’t she beautiful?

Today I want to share with you a look into what an amazing woman my Mother was. I’m doing this not just because it’s Mother’s Day, but also because what she shared with me as I grew up is exactly why I am who I am today.

My Mother was tirelessly creative and wholesome. She could raise a chicken from egg to table, grow county fair blue ribbon winning produce from a garden of her own making, she was the queen of everything kitchen!

On the farm, Mom could work a hay field, milk a herd of cows, cook a dinner for 12 and then do it all over again the next day. And still be Mom.

Mom loved the countryside. She and I would go on excursions sometimes with a destination, sometimes not. I could see in her beautiful blue eyes that the farm was still in her heart. She never stopped marveling at how beautiful our world is. It really is true that you can take the girl from the farm, but you can’t take the farm from the girl. Something about that kind of upbringing brings heartfelt appreciation for everything.

Mom had a spirit of endless strength. She put trust in people to do her right and when that didn’t happen, she left. She put up with a lot and put on a smile to hide what was really going on at home. I never really knew how hard it was for her until the night Mom gathered my brothers and I and put as many things as she could in paper bags and left my father. That was a very frightening night but Mom, she held her own and stood up for herself and in the middle of the night, we just left. Then came the Curve Café where Mom, once again, took life by the horns and made a place as a restaurateur where community gathered and bellies were filled.

Mom also had this little part of sadness inside. She was just 21 days old when her Mother passed away from complications of childbirth. She was then adopted by an Aunt and separated from her Father and Brother. It wasn’t until she had graduated from high school that she reunited with her Father and much later in life with her brother. Even though, she held on to the hope and promise of finding that family connection. Family became very important to her.

Mom was a tough cookie too. She could be a pistol, a stinker, and challenge to ones deepest patience. But that was Mom, she was really good at that.

Mom and I would spend all day Saturday’s in the kitchen making, baking, canning, or cooking something. My favorite memories are those of making donuts and homemade pasta. A lot of work but boy, did we have fun! At Christmas time a literal cookie factory appeared in the house! Traditionally, Mom and I would make, yes, the dreaded fruitcake. Have you ever made fruitcake? You need super human strength to stir the batter! That Mom and I did together, one would hold the bowl, the other stir, then we switched and laughed, and laughed. By the way, that fruitcake – absolutely delicious!

Mom could make anything, no matter what, she would just do it. She could sew the most beautiful things; curtains, upholstery, dresses, even her Granddaughter’s wedding dress. She could mend clothing like no one’s business and even after we grew up and left the house, we’d continued to bring her our mending. She was especially expert in replacing zippers.

Mom loved music. She directed a choir in church and knew every beautiful old traditional hymn there is. She and I would gather around the piano where she would play and we would sing together, her alto, me soprano. I loved those times together and each Sunday at church I find myself in memories as one of those hymns ring through the day.

Mom taught me how to play the piano and read music. She did this through one of her amazing creative methods by painting white a long board, the length of the keyboard on the piano. Then she drew on staff lines, then the notes as they would appear in sheet music. She had every note that lies on a keyboard meticulously drawn on that board. From that I learned how to play those beautiful old hymns, and even Stairway to Heaven. One afternoon, I sat with my step-Father to teach him how to play Silent Night. No easy task as Pops had the biggest hands and fingers I have yet to see again! It took us the whole afternoon for Pops to master the song but he did it and imagine the surprise on my Mom’s face when we presented our mini concert!

Oh, the flowers Mom would grow… Amazing blooms of all kinds that from spring to late fall would grace the landscape with colors of the rainbow and scents of heaven. Everywhere Mom has lived there remains her blooms still bringing to life her grace.

Mom also loved wild birds. She feed them year round and knew the name of every species that showed up to partake in either the feast she provided or through the blooms that teased them into the yard.

Mom was notorious for her funny little crocheted masterpieces. From the Mr. and Mrs. Snow People set we all got for Christmas one year, to the three tiered toilet paper holders. She could crochet, watch a movie and explain her whole day’s activities all at the same time and never miss a stitch. I still display Mr. and Mrs. Snow People every Christmas.

When Mom was in her 70’s she decided to go to work at local assisted living residencies. She said “I’m taking care of old people”…. She studied and received certifications for all kinds of assistant care. She would cook wonderful meals, and sit with folks to talk or simply hold a hand. She was a very giving, compassionate and caring woman.

Mom had several serious health knocks. First an uterine cancer scare of which she beat. Then, breast cancer, which she beat. Then heart valve replacement surgery, which she came through with flying colors. Mom then developed COPD, and her little heart started getting tired. Still, she showed strength but she was sad. She didn’t want to leave us but she did – the only thing she couldn’t beat was that. She passed away Christmas morning 2008.

Mom could do anything, and she would. She was tenacious and just put her mind to it and did it. She was our rock- the matriarch, she was our master gardener, chef, designer, music maker, teacher, adventurer, and Mom. She loved fiercely; she gave her all for her family. Everyone in town knew her and understood how special she was.

I can still hear her deep laughter; see how her eyes would twinkle with something silly brewing in her mind. She was a funny lady and oh, the tear rolling laughter we shared!

Mom made me who I am today. I see now just how much. I thank God and her for her strength, her hope, inspiration, optimism, motivation, compassion, silliness, and creative spirit. I find these things wrapped up in me too, in my heart, with Mom’s embrace.

Today I honor my Mother. I miss her terribly and love her even more. Happy Mother’s Day Mom…. I have a feeling you’re doing amazing things in heaven. And I’m sure there’s not a hungry soul there…

I love you Mom

Mary Lou Witte

1927 – 2008

Posted in Happy Mothers Day | Tagged Cambridge Wisconsin, cheryl schiltz, Mary Lou Witte, silencing the noise of disability, wisconsin | Leave a comment

Disability is…

Posted on May 11, 2013 by Cheryl Schiltz Photography

At the onset I thought that I would never find my way out of the incredibly life strangling emotional nightmare I was screaming in. It was controlling my every thought, movement, desire, and wishes. It took control of me…

To me, living without a normal functioning vestibular system, with no sense of balance or gravity, and that crazy bouncing blurring vision was what it might be like living without ever being loved. Or worse yet, losing all the love you have ever known. It was so very sad to me loosing something so personally right for me.

No matter what is taken from someone and in its place left a disability, that loss is overwhelmingly devastating. It touches the very center of a person; the place where all things come together that makes the person who they are. Then, out of nowhere like a stealthy trickster, something or someone takes that center and pushes it out of kilter by squeezing in a completely foreign object. It hurts, it hurts real bad.

Disability isn’t easy and I don’t wish to imply that it is. It isn’t something that can be accepted with a flip of a thought or even a hope and a prayer. It’s something very personal, unique, and different for every person with a disability. It takes time, a whole lot of time to come to whatever terms of relationship one comes to with their disability. What might work for one, won’t for another. How one person feels the other feels opposite. Disability is hard. It challenges each and every day, hour, moment. It puts up a hell of fight and tires one out through a dance of dodging emotions.

My disability controlled everything inside and outside of me. It wouldn’t leave me alone inside through its never ceasing swirl of dangerous thoughts beating up my brain. It took control of my movements, my vision, my getting from one place to another. I was captive in my own inside.

Outside everything teased me, bullied me and even beat me up. My environment, once fully in tuned with my inside, had turned into a lifelong motion picture of tragedy, with no end, no co-stars, and no credits to cheer about. There was nothing on the outside that felt comfortable any longer. The outside was one long continuous obstacle that took a lot of planning to figure out. It took up a lot of energy just to find even a little space of comfort where the inside and outside could come together for a few moments rest.

Everyone with a disability has their own unique story. Mine is what I made it and so is everyone else’s. I cannot express how touched with awe I have been through witnessing others as they journey through their lives with a disability. Some of the amazing people I’ve meet have extraordinary lives living with disability, some quite severe where one might think, how can that person be so happy? I think it has a lot to do with control, who controls what – is it the disability controlling the person or is the person controlling the disability?

That was a question I pondered for some time. At first I thought, really, how can I control what’s going on with me, with what my brain and body fights me with all the time? I didn’t have any control over it; it was taking control of me – everywhere, inside and out! I was under control of something I had no true understanding of. I didn’t understand what was happening to me. Even though I had read what I could, learned as much as I thought I did, I still did not really; truly understand what disability was to me. And I certainly could not control something I didn’t understand.

So there began my studies. In more classes than I ever thought I would take.

Posted in Acceptance, Disability, Disability is..., Gentamicin, Gravity, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Rehabilitation, Self Help, Transition, Vestibular System, Who controls disability? | Tagged brainport, cheryl schiltz, gentamicin, madison, norman doidge, Oscillopsia, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, United States, University of Wisconsin, wisconsin | Leave a comment

Disability and Opportunity? Really?

Posted on May 9, 2013 by Cheryl Schiltz Photography

Okay, sounds ridiculous right? That disability is an opportunity; that it provides opportunity to discover new and exciting things about life… yea, right. Just how does that happen when yesterday I could, today I can’t…

Opportunity. What does that really mean? What if we try to define what opportunity is and reflect on that as a possible step into it? Could that it be a step to setting course to a lot of other steps? Let’s see, shall we?

I pulled some definitions about opportunity from Webster’s online dictionary. Couldn’t find my hard copy… I found opportunity defined as: “a favorable combination of circumstances, time, and place”. My example: “this circumstance I am is a wonderful opportunity for me to finally develop and write my blog and share words of hope and insight of what I’ve learned from being introduced to disability”. Yep, an opportunity. What’s yours?

Phrases, praises, architect of change and… what’s this outfit I’m wearing?

Posted on May 8, 2013 by Cheryl Schiltz Photography

Would’ve, could’ve, should’ve… you know those “if only I would have’s”… These little phrases serve no purpose other than to torment us, add to the noise. Not to say that they are forbidden to be said or thought or asked, they should, it’s all part of the introduction process. Yep, have to go there… It’s moving through them and not getting stuck in them that’s the tricky part. When I moved through these phrases my thoughts became held up in ruminating questions that serve no answers, the noise became louder and I couldn’t pay attention to the simple sweet noise of simply being me.

So far I’ve not found where it is written that one has to like it when bad things happen or to go about our days like nothing happened. We aren’t Saints or Prophets, or even in a position to change the world, but hey, what we can change is our mind by practicing attention to regarding anything as possible. I found that by paying full direct attention, anything can be done. Yes, we can rise above rumination to a place where opportunities to offer close consideration and praise of every positive experience that has shaped our beings is as abundant as the stars. I learned I still had that amazing being, I was still me – just in a different outfit – so it’s a bit mismatched, but that’s okay, it suits me just beautifully.

I’m also going to suggest that it is perfectly okay to be pissed off in the most incredibly, intense, monumental way. Yes indeed you should be pissed! But pissing around through self inflicted tormenting serves no purpose other than to freeze time in a place you know you don’t want to be. Piss on that fire, put it out and start another, a fire where you set your future to blaze fueled with self determination, goals, dreams and anything else you want to add to it – you can do it, no matter what, there are ways, there are people, things and places that can help. But remember it is you that is the primary architect that’s building your future. Whatever it is that you have always wanted to do – now is the time. You get to design how you will do it by exploring and developing the process as it fits your needs. Just pay attention and you will find amazing ways to depart your way from blame and anger into, you, sweet, beautiful, amazing you.

Posted in Acceptance, Disability, Gentamicin, Inspiration, Letting go of Blame, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, Self Help, Transition, Vestibular System, What's noise? | Tagged apying attention, brainport, cheryl schiltz, gentamicin, norman doidge, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, University of Wisconsin, wisconsin | 2 Comments

Don’t forget – BLAME – it’s noisy too!

Posted on May 7, 2013 by Cheryl Schiltz Photography

Image from Google Images 5-7-2013

Oh, looking for that someone or something to blame… anything to direct your anger, to point a finger, to say, “It’s all your fault”!

I was once hardened by putting the blame, and the work of getting better, onto someone else. To me, that seemed to be an entitlement of sorts! But what I figured out, through sorting through the noise of blame, was that I was just trying to find a way out of having to feel the reality of where a situation had placed me After all, I certainly didn’t want to be there so it has to be someone else’s fault! Right?

Often the act of blame becomes a self-inflicted wound to the person experiencing a life altering change in themselves. One can become consumed with trying to find the answer to why someone let it happen in the first place – but really, look all you want – there are no answers, it is what it is, it happened, there is nothing you can do to change it. Of course, please let me be clear that yes, there may be other players into how one acquires a disability – an accident took place, a medical mistake happened, an illness took form. I was incredibly full of blame towards my medical team for their mistake – yes, they made a mistake and now I get to live with the results. Thank you very much. But let’s ponder a few of the words I just used here – accident, mistake, illness… Accidents happen, so do mistakes, and illness happens all the time to all kinds of people. We can blame, but can we not also understand that life happens as it does? Can we pause the blame and play our life? I think we can – but letting go of blame means the pause button has to be pressed.

There are so many ways one can reinvent life by inviting life building experiences accumulated throughout pre-disability into a post-disability life. Those experiences are ones gifts, assets, strengths, and talents and those are ones attributes that can never disappear. They are pieces of one’s self on which exist a wonderful foundation to discover and build a customized new world for yourself. What I think is great about this are the endless creative opportunities that exist! Imagine, getting to discover all over again but this time having knowledge and skills already in place – we’re ahead of the blame!

When we were growing up we learned everything through experience. We were taught how to do things, how to be polite, persevering, what feelings were, what being responsible meant, how to talk by learning language, we learned how to read and write and do arithmetic. We’ve all been through good and bad learning experiences too. We’ve had our hearts broken, we’ve lost our favorite pet, and we’ve lost our Grandma’s and Grandpa’s, maybe even our Mom and Dad’s and other loved ones. We’ve lost things very important to us, right? We probably even blamed someone too. But even still, all of those experiences were learning experiences and will always be a part of us.

This turned out to be an important insight for me. I revisited myself before disability to reflect on those things that made me, well, me. I wallowed in memories that have shaped me, but had to work hard on staying away from stepping towards the “well, that’ll never happen again” noise. But it was when I said to myself, “Hey, guess what – most of your memories were experiences that only happened once, they are done with and you moved on, you made it though!”. So, if I thought about my past experiences in that way, perhaps I could begin to think about my past as my stepping stones to my introduction to disability and to where I am at this very moment. You see, I lost things before, things I thought I could never, ever live without. Turns out, those were the very things that lent a hand to my living.

Posted in Acceptance, Disability, Gentamicin, Inspiration, Letting go of Blame, Motivation, Non Fiction, Ototoxicity, Perception, Self Help, Transition | Tagged antibiotics, brainport, cheryl schiltz, gentamicin, Letting go of Blame, madison, norman doidge, ototoxiciity, paul bach-y-rita, perception, silencing the noise of disability, United States, University of Wisconsin, wisconsin | Leave a comment

Subject Zero

The Maze

The First Meeting

Sensory What?

Real Deal College Classes!

Understanding DisABILITY

Happy Mothers Day

Disability is…

Disability and Opportunity? Really?

Phrases, praises, architect of change and… what’s this outfit I’m wearing?

Don’t forget – BLAME – it’s noisy too!

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