What was my work history prior to all this happening?

Posted on April 24, 2013 by Cheryl Schiltz Photography

          So, what kind of work history did I have prior to all this happening?   I think I have an eclectic resume of employment that never bored me, and always challenged me.  I began my employment history, like almost every small town gal does, as a waitress at the local diner.  After all, my parents ran the Stop Light Café in Cambridge, Wisconsin for years so that  meant the “Curve Cafe” was a perfect job fit for me!  There, great local food was served to a lot of long time local folks.  I worked there throughout my junior and senior year of high school and had a great time enjoying the patrons wonderful humor, appreciation of a good meal, and of course, the tips!

            After high school I attempted college in Milwaukee at Cardinal Stritch majoring in Special Education.  From that experience I learned how important it is to be committed to higher education before attempting it…  I made it through the first semester.  I then went to work in a local nursing home (given my current stance on independent community living for all, this produces a gasp from my belly, however, at that time, in the 1970’s institutionalization was alive and well but challenges to end it was beginning).

            I also volunteered a lot by assisting community members with disabilities in their home through just visiting, helping with chores or simply listening to their amazing stories.  I volunteered at St. Coletta school (where the Kennedy’s sister Rosemary lived), and the then named “Wisconsin Central Colony”, both “homes” for persons with significant disabilities.  Here I provided comfort, shared conversation, a caring touch, a share of love.  I must say these experiences fed my heart compassion and love for all people.  When you look into the eyes of someone who is in a place of forgotten, you will never forget it…  I weep as I write this….

            Following what seems to be a pattern, I began working at Bethesda Lutheran Home in Watertown, WI.  I was assigned to work in a wing where approximately 20 adult men with a wide variety of significant disabilities lived.  This, again, was in the 1970’s when de-institutionalization was beginning to be quite a movement.  I knew this going into this job but something pulled me into being there, to experience life inside an institution, perhaps so I could fight against as I do today…  Out of respect for the residents I cared for, I will say only this, having shared so much time with the men on that wing, and seeing real life people behind hidden eyes, I shall never forget how the inside of disability looks.

            I did a very short stint working at an egg processing plant.  Hint, never work at an egg processing plant.

            I worked as a CNA in nursing homes, as a receptionist at a real estate office, a couple seasonal stints at a cheese and gift distribution center and outlet, to finding my path into office reception, management and outside sales representative coordinator.  I then had the opportunity to grow into international export control and management.  Here is where I had the grand opportunity to travel throughout Europe and to South Korea, what an amazing experience that was!  I then moved over to the domestic side of inside sales and marketing.  This is where I was when the noise of disability captured me.

I very much missed working as I loved my job and my co-workers were the best, especially my supervisor, Scott.  He was truly wonderful to work for from his great attitude, knowledge of everything animal health, to really being a good friend.  I really missed being around people…  Because of my surgery and my lovely introduction to disability, I had been out of work for almost three months.  With one round of PT completed and in the midst of another, I returned. Yes, I drove myself to work – but that was short lived when I was able to work out a ride share with a co-worker…  thank God…

I worked at Holt Products, a leading Animal Health Products Distributor.  I did a lot of my work in the wild bird product division selling to stores nationwide, but also with several privately owned animal health stores.  From horses, to cows, to chickens, pigs, and pets, I had a customer base all over the United States.  I had the best time working with all my customers and never did a day at work feel like a chore.  I could multitask like no one’s business, two phones and two computers going at the same time and punching in orders for shipment the same day.  It was awesome!

So, first day back to work…  I used the wall as a guide to try and keep myself from stumbling as I made my way to my work area and to somehow stop the feeling I was floating away into space.  My eyes were fixed on the floor taking in short upward blurry glances to confirm I wasn’t going to run into anything.  I felt flushed from the heat coming from the unintentional stares of my co-workers.  I fought back the tears as I tried to make out the blurred and moving objects in front of me.  I see a person, but I cannot make out who it is.  I feel a big hug and hear, “Welcome back Cheryl!”  Not until I completely stopped moving and held my breath could I recognize that it was my supervisor, Scott.  As I held my breath, I also held in my fear.  This was another notch in my making believe belt…

“Thanks Scott, it’s good to be back.”I lied.  Who was I kidding?  I was terrified and another verse of noise was added…

Posted in Disability, Gentamicin, Gravity, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Physical Therapy, Rehabilitation, Research, Self Help, Transition, Vestibular System, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Making it up, making believe

Posted on April 23, 2013 by Cheryl Schiltz Photography

So, there I was, finished with physical therapy.  As if the 12 weeks I was afforded by my health insurance had made some miraculous change in me…  Sorry to say, it didn’t.  I wobbled, banged, crashed, stumbled and fell just as much as ever.  I was so consumed by trying not to wobble, bang, crash, stumble and fall that that’s all my waking, and even sleeping, hours could think about.  There was no room for anything else but to think about it, a lot of noise….  If anything, the one main thing I got out of physical therapy was “feel your feet”.  That was in an attempt to help me zone into where at least my bottom end was!

By now it was the end of January and, in my mind, all I could decipher was that I had 19 years, 8 months to go to reach that magic 20 years when “most people become accustomed to their condition”.  Seriously, 19 years, 8 months and I was finished with therapy?  That just didn’t seem right to me, how could I be finished when I still could barely get around my own home?  Then it hit me.  I recalled asking the physical therapists to take me outside and work with me, in the real world, however, that wasn’t something in my PT protocol.  So, as I thought about that I realized that each time I had left the PT clinic that I had been working in my real world therapy all along just getting to and from the clinic!  I decided from then on my therapy was going to be on my terms and with exercises that I found worked with me.  I gained control!  Well, let me tell you how that particular thought changed my direction!  Thinking back on this I now understand that this was the first time that I realized my disability was not going to control me, I get to control IT!  It was my first unconscious attempt of turning down the noise of disability.

I began my real world therapy with a ramp made from a piece of wide wood that propped up on the bottom step of the stairs going to my homes upper level.  I would stand on that ramp with what I guess was a 20 degree angle.  I worked and worked at trying to stand on that ramp in an upright position.  Not a very easy task to begin or one that could even be mastered in 6 or 12 weeks, it took a much longer time than that.  But I stuck with it.  I positioned the ramp so I could hang on to or grab the door frame when I had to, which was a lot.  This adventure was tremendously difficult because my new “normal” way of standing, walking, or sitting was with my upper body leaned forward so far that I felt as if I were nearly aligned parallel with the floor.  I also could not hold my head up for any length of time.  Little by little it would drop until I realized that my chin was almost resting on my chest.  I felt like one of those toys that have a push button on the bottom that when pressed in the toy just crumbles down into a pile.  I felt like someone was pushing my button all the time.  I was like a noodle from the waist up.

Another of my real world therapy sessions was walking outside – without using my cane.  Not the safest thing for me to do, but neither was driving myself to the doctor on the first day all this happened to me, right?  I then lived in the small village of Cambria, Wisconsin. It was a lovely area surrounded by farms and beautiful country roads.  The village nestled between two big slopping hills and walking up and down the sidewalks was a workout even for someone without the challenges I had.  Nonetheless, I mustered up the strength and began first with walking around blocks near my home where it was not quite so challenging, being on the top of the hill.  It was, however, extremely challenging to walk, in any way shape or form, a straight line.  I must have looked ridiculously drunk!  As a matter of fact, I later heard the word around town was that I must be enjoying quite a few libations before venturing out.  See, no one really knew what was going on with me, yep, even in a small town like Cambria.  There were my neighbors and a few others, but other than that, at the start, no one had a clue.

After I heard about the drunken Cheryl, I started carrying a bottle of water in a brown paper bag… that’ll teach ‘em I thought… I had to interject humor anywhere I could those days.

Even though my optimism shined and my humor tickled funny bones, I continued to have a very difficult time personally finding anything funny at all.  I thought I was controlling things but really, all along I was just making things up, I made believe.  I became an expert in making believe… even though I had began devising ways to compensate for the way I was, and beginning to make a dent in the noise, making believe somehow made the noise louder in other ways.  My body, my mind, my environment, my everything was a mixed up composition played by a symphony of out of tune instruments – and I was the only one who could hear it…

Posted in Disability, Gentamicin, Gravity, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Physical Therapy, Rehabilitation, Research, Self Help, Transition, Vestibular System, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , | Leave a comment

An Anatomy Lesson

Posted on April 20, 2013 by Cheryl Schiltz Photography

I believe it would be helpful to provide some basic anatomical information to provide you with a better understanding to what a vestibular system is and why it’s so important to our connection to our surroundings, our center and, to gravity.  After all, I had no idea something like this existed in my body so how can I expect you to know either.  Let’s start with an illustration of the vestibular system that is the major area of damage from ototoxity (ear poisoning) which my case, was a result of a side effect from the use of the antibiotic gentamicin.  The vestibular system is located in the inner ear:

Image

Image from Google Images

When gentamicin is eliminated in the body, as all things are like liquids, solids, and yes, medications, for some reason gentamicin is eliminated through the kidneys and strangely enough, the inner ear.  Through this elimination the hair cells in the vestibular mechanism of the inner ear are damaged and can no longer pick up the signal of the body’s movement, or provide the connection to the sense of gravity.

Image

Image from Google Images

What this illustration demonstrates are the inner working components of the vestibular system.  Keep in mind, these parts are microscopic in nature but is how information of balance gets to the brain.  It all begins with the otoliths at the top of this illustration.  These cause a movement in the otolithic membrane which is a Jello like substance that moves in correspondence to the many ways our body moves around.  This shift in this membrane tickles the hair cells which send signals to the vestibular nerve fibers that movement has taken place.  The vestibular nerve corresponds to the eight cranial nerve of the brain that sends signals that movement has occurred.  Without this signal, there are no messengers telling the brain, or the body, where it is in space.  There is a complete disconnection between the body and its ability to perceive what is up, down or sideways, much like zero gravity in outer space.

 

Image

Photo from Google Images

Only thing wrong with this photo is when one has vestibular damage, this feeling isn’t all that fun…. You feel this way all the time..

ImageImage from Google Images

Because there is a direct correlation between the vestibular system and the visual, or ocular system, an corresponding side effect of a damaged vestibular system is a visual condition called, oscillopsia, or bouncy and blurry vision.  Here’s a great illustration from YouTube of what that looks like:

http://www.youtube.com/watch?v=fsD3RDUqgJU

Here’s a pretty good picture of what it looks like to see with oscillopsia:

 Image

Image from Google Images

           The vestibular and ocular systems work together because of the connection that travels from the vestibular organ in the inner are to the optical system.  Weird, huh?

          I hope this gives you a better understanding of why I lost my sense of balance and what oscillopsia looks like.  Put the two together and wow, what a mixed up world it becomes…  and really, really hard to live with…

 

Posted in Disability, Gentamicin, Gravity, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Rehabilitation, Research, Self Help, Transition, Vestibular System, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , | 2 Comments

Disconnected

Posted on April 19, 2013 by Cheryl Schiltz Photography

It was very much as if I were a child learning how to sit, stand, or walk.  I held no concept to my connection to perception, to perceiving where I was in space.  Through what were most likely basic survival instincts, I began to maneuver my body in such ways to try and trick it into a false sense of, gravity.  After all, I no longer had a concept of gravity – I was nowhere, anywhere in space.  I was floating in nothingness completely void of a center, of a place from which to set a direction.

I began using a cane as a third point of reference to where I was in this mixed up world I was trying to accommodate to.  Yea, I had to accommodate to being completely opposite to everything, right down who I thought I was.

My posture went from upright and proud to stooped over, rigid, feet wide apart, head down hoping to simply get from one place to the other without falling to the ground.

Image

(photo from Google Images)

          Seriously, I was disconnected from my world.  I was a mistaken identity to myself and to my surroundings.  I couldn’t participate in my surroundings as I was consumed with trying to figure out where I was, how to go anywhere, how to relate to anything around me and trying not to fall down.  I was in a nothingness void of complete separation from what use to be and where I was placed without permission trying desperately to find a way to reconnect to something I could hold on to again.

Posted in Disability, Gravity, Independent Living, Inspiration, Motivation, Non Fiction, Perception, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , | Leave a comment

Ah, the Joys of Physical Therapy…

Posted on April 17, 2013 by Cheryl Schiltz Photography

It took weeks for the proper paperwork between insurance and referrals to coordinate so I could begin physical therapy that, as the doctor had put it, will help me “get use to it” referring to the damage the antibiotic Gentamicin did to my vestibular system.  In the meantime I wobbled, bounced, banged and crashed through everything I did.  Finally, after waiting 6 weeks I was allowed 6 weeks of therapy.

It began with finding a baseline of my abilities, or lack thereof, in a specialized booth called “The Balance Master”.

                              Image

The SMART Balance Master® utilizes a dynamic force plate with rotation capabilities to quantify the vertical forces exerted through the patient’s feet to measure center of gravity position and postural control; and a dynamic visual surround to measure the patient’s use of visual information to maintain balance. It provides assessment and retraining capabilities with visual biofeedback on either a stable or unstable support surface and in a stable or dynamic visual environment.

The SMART Balance Master® system is ideal for the comprehensive balance program.

(Photo from:  Google Images, Text from http://www.onbalance.com/products/Balance-Master/detail.php)

Why this contraption is called a Balance Master is beyond my comprehension. Without a sense of balance, I’m at a loss for how anyone could “master” anything!

“I’m scared Linde…”  I’m in the booth much like a larger and more modern version of the old telephone booths, only there isn’t a door to close you in.   I’m fit into and bound up in a harness much like that of a parachute.  The straps of the harness were attached to poles above my head designed to hold me up and save me from crashing to the ground, which thankfully, it did.   Making sure I was properly secure, the “mastering” began; the walls of the booth moved, the floor tilted, and my body completely disconnects from any sense of up, down or even sideways.  I was left dangling and suspended as if my parachute had captured me in a tree.  Terrorized tears flowed from my eyes, I have never felt so lost, out of control and the absence of any sense of my surroundings.

“Get me out of here!”  My complete being shook and I was devastated that I was not able to do something as simple as just standing.  The physical therapist removed the harness and helped me to a chair where I sat and sobbed.  I was completely overwhelmed with fear and for the first time the true sense of loss hit my soul.  It really 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 therapy coach, tried her best to encourage and comfort me towards trying again.  But as I sat there shaking uncontrollably I just could not find a reason to step back into the newly realized nightmare that I was living.  I thought to myself, “isn’t what just happened baseline enough?”  Nope, I wasn’t going to get out it that easy.  It took some time before the kind and supportive words from my friend and the physical therapist showed me that I had enough strength and will to get back up and start again, and again, and again, and again… For years I went through a series of trying again and again…  Little did I know that I was facing a lifetime of agains…

I was in that Balance Master contraption for over an hour trying again and again.  Results?  I had no sense of balance.  No kidding….  I suppose this is a pretty good example of my snarkiness rearing up indicating a show of the stage of anger…. Yes, there are stages to trauma and they love to show up without order or invitation – Anger, Denial, Bargaining, Depression, and then – (horns blowing) – Acceptance!

I do have to say that I think it’s one thing to conduct tests and trials on individuals, it’s another to be open and honest and informative of why they are being performed, what the technicians and doctors are looking for and how it all relates to what’s going on.  For me, not truly being informed or understanding what all those PT exercises and “mastering” were all about twirled this experience in a way that set me onto a stage of rehabilitation fear.  What was to come next, throwing me on a bicycle and see if I could ride down the middle of University Avenue?  Really, let’s get honest, okay?

Regardless, I was a faithful participant in my therapy sitting on large bouncy exercise balls (try that without knowing where the hell you are in space), sitting and getting up without holding on to anything (that was fun…), walking along a straight line or through a maze, (ah, so that’s how a sobriety test is failed!).  After a while I just couldn’t see any connection between what I was doing in PT and with the real deal world outside the PT room walls.  I expressed my desire to do work outside but to no avail.  I was told I wasn’t ready.  I replied, how do you think I got here????

I faithfully completed my 6 weeks of physical therapy appointments.  It was determined, and apparent, that I required additional therapy so once again I waited weeks for an additional referral to be finalized to begin another 6 weeks of try, try, try again.  Although I portrayed a funny, optimistic and determined attitude, deep down was this continuous and ridiculously loud internal dialogue going on between two very different and parallel worlds.

Posted in Disability, Independent Living, Inspiration, Motivation, Non Fiction, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

Noise, Noise, Noise

Posted on April 16, 2013 by Cheryl Schiltz Photography

     The ride home with Mom was spent in painful silence.  Neither of us could come up with anything to say.  But in my head there were incredibly noisy screams of fear, anger, confusion and uncertainty.  What the hell was I going to do?  I had nothing to base any decisions on or for that matter, attempts to find information to help make decisions.  I didn’t know what to do.  I was sent out into a foreign world without directions, instructions, or resources.  I had no place to feel grounded, and certainly no frame of reference to what to do next.  I had no idea where to take a first step, albeit a very unstable one, to find help.  There was only grief gripped noise filled thoughts of what will never be again, what I had just lost, what I was about to lose.  Little did I realize how that noise was going to magnify as my days, weeks, months and even years, began to unfold.

     I was consumed in a daze.  I was so exhausted.  Not just from dealing with the changes in my physical functioning but from the emotional turmoil my mind was in.  I denied what was happening.  I just could not believe it.  I was really angry with myself for not standing up for myself, for asking for help and, for seeking resources that might have helped me.  I was scared.  Not just an uncertainty scared but a deep down feel it in my bones terrorizing 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.  Not even my own reflection was still, it bounced and blurred just like everything else.

     I felt separated, as if I were in two different places at one time, as if I were two different people.  One remained in the place that always was and the other floundered in what was now.  Each thought, step, plan and movement I attempted wanted to set out in a pre-disability manner – the way it was when I didn’t have to think about it, when I just did it.  But now I had become swallowed in having to think about every single step needed to make my way from one place to another.  My world was a stranger to me and I was a stranger to my world.

     My home became an obstacle course, one that challenged me daily.  Without any sense of balance I had to force my way up and down stairs, around furniture, through hallways and around corners.  I felt as if I were in training for a marathon of obstacle courses!  I stumbled, fell, bumped into and crashed over things that had been placed in a manner meant to be pleasing to the eye and functional for the soul.  But now, everything stood out and presented itself to me as something that wanted to trick my soul.

     I found my way through my home using touch points.  Every pathway I worked out needed to include something to touch along the way, something that I could grab and hold on to.  Without this mental mapping, I felt absolutely no sense of grounding.  I literally felt as if I were being sucked out into space, without any sense of gravity, tumbling endlessly without a place to land.

No Gravity...

Posted in Disability, Independent Living, Inspiration, Motivation, Non Fiction, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , | Leave a comment

The Discovery

Posted on April 15, 2013 by Cheryl Schiltz Photography

When the tests were finally completed I was told that the doctor would be in shortly to talk to me about the results.  I needed to use the restroom and on my own made my way to it by hanging on to the walls.  On my way back to the examination room I met the doctor in the hallway.   As I leaned against the wall with my hands fiercely gripping its rough and cold surface, it was there that I was told the most life changing news I would ever hear.

I remember with extreme vividness that exact moment.  There in an unending confine of a hallway I was told that I would be living the rest of my life without a sense of balance, without knowing where I was in space and that I would never be able to see things clearly and stably again.  I still recall the bouncing steel blue color of the doctor’s eyes as he told me the life I had come to know and relate to so well had ended.  I still feel the texture of the wall I was clinging to, its roughness and cold demeanor.  I can still sense the people that were passing by as I sobbed through the words the doctor was telling me.  The sounds and smells of medicine were everywhere, mingled around words of permanent, you’ll get used to it, there’s therapy available to help you cope, it will improve as the years go by, usually within 20 years people get used to it…  The word permanent was the worst for the moment it left the doctors mouth and formed its wound within my comprehension, it removed all that I had ever come to know and understand about my relationship with the world and replaced it with a fear I have never experienced before.  In just one word, everything changed and with that change an indescribable sense of despair of not knowing what to do next swallowed me.  I became paralyzed in fear and uncertainty.  I became blind to the surroundings I had been put in, mute to questions and deaf to answers.  The doctor kept speaking but all I could hear was “permanent”, all I could feel was “permanent”.  I felt as if I was suffocating and everything seemed to disappear from my comprehension and I felt swallowed by that horrible nothingness.  It was surreal, it was terrorizing, it was packed with physical, emotional, and perceptual noise.

When the doctor finished his presentation I was left standing there, still holding onto the wall with tears streaming down my cheeks.  I was stunned and for a long time I couldn’t move.  As patients, nurses and others passed by me, I felt my first feeling of being an oddity on display.  Then I asked myself, “why didn’t the doctor have the decency to take me to his office to tell me this life changing news”?   Finally, in a daze left to my own defenses I somehow found my way out of the clinic and back to my mother.  All I wanted at that moment was my Mom….
It took forever to walk down the hallway from the spot the doctor handed me my life sentence.  I found the railings in the next hallway and felt relieved when I saw them.   I  grabbed a strong hold in an attempt to not to let anyone in on my discovery.  It didn’t work as from my perspective, the railings were just a prop and if I let go, I would fall.  The railing was my only grounding to not falling over or sliding off my world like one would out of the side of a tilted plane.  I came upon a hallway intersection and the handrails ran out…  I recall standing there in sheer terror thinking how I was going to get from one side to the other without falling.  That was the first of the never-ending series of noisy thoughts that I went through every time I attempted to move in my world.  From that moment on prior to each time I set course to move I had to literally map out my route to find points of reference and things I could hang on to as I went from point A to point B.  My life suddenly became a work of developing a continuous series of self made maps.

Exhausted, I made it out of the clinic and to the car where my Mother went to wait for me.  I got in the car swallowed by 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, 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….”  This is when the noise began to roar…

Posted in Disability, Independent Living, Inspiration, Motivation, Non Fiction, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , | Leave a comment

Testing… 1, 2, 3…..

Posted on April 14, 2013 by Cheryl Schiltz Photography

I spent the remainder of that evening frantic and tearfully waiting for the next day to  call my doctor and talk about what I had discovered.  I prayed that what I found had nothing to do with my symptoms, that it really was just an ear infection.  But there was this sense within me that I needed to prepare for the worst.  I think we all know when something isn’t right with our bodies.  I could absolutely tell that something wasn’t right with mine.  Never have I felt anything like this and I began to feel I had entered a very different place in the world and in my life.

The next morning I phoned the clinic and again, at my insistence was given another same day appointment.  Again, somehow I drove myself to the clinic,   Once there I detailed the information I found on my computer to the doctor I who had seen previously and who prescribed the Meclizine.  This time he sent me home with a referral to an Ear Nose and Throat doctor for an appointment a week later.  I spent that week in a terrorized state, physically, emotionally, and psychologically.  I spent most of it in either in bed or lying on the couch afraid to move and afraid to think about what was happening.  A million questions came and went, none which I could find answers for.  An incredibly loud and noisy sense of impending doom surrounded me and but I could do was wait, wait for some kind of answer that I hoped would make some kind of sense.  That answer came but to this day, it still does not make complete sense.

After driving those several trips to the doctors on my own, I finally realized how ridiculous it was for me to be driving.  This time I called my mother and asked her to drive me to the ENT appointment.  Of course, she came to take care of me and this was the first time my mother saw me since the problems started.  She was horrified, sad, and fearful for her only daughter.   On our way to the clinic I tried in vain to hold back my tears as I hung on to the inside of the car with all my might to stop my from flailing all over the seat.  Mom was so scared and I could see how much she wanted whatever was gripping me to leave me alone.

As Mom sat in the waiting room I underwent a long series of tests that involved dark rooms, flashing lights, and hot and cold air and water placed into my ears.  I didn’t understand why air and water was being put in my ears and no one really explained anything to me.  I was only told that if my vestibular system, which is what tells our brain we are in balance and connected to the world, was working properly, I would become violently ill, extremely dizzy and would have thrown up.  I felt nothing.  My eyes wiggled uncontrollably and hard as I tried, I could not control their movements.  I was given a hearing test.  All of these tests took a long time and confused and frightened me beyond words.  And the terminology the doctors and nurses were using frightened me even more.  Beyond what I had learned on the internet, I didn’t quite understand what they talking about, doing to me or why they were doing what they were.  I asked questions but answers were vague and didn’t go beyond “we’re testing your eye movements” or “testing your hearing”.  I asked why they were testing these things but the vagueness continued to fill the room.  I remember feeling incredibly scared as that even louder, noisier, sense of impending doom became closer and closer….

Posted in Disability, Independent Living, Inspiration, Motivation, Non Fiction, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , | Leave a comment

Pills, Fear, and Forever Changed

Posted on April 12, 2013 by Cheryl Schiltz Photography

I felt that no one was listening to my concerns.  I had a bad feeling that what I was experiencing had something to do with the antibiotics I had been taking.  I tried to communicate this but it seemed to only separate me from everything and everyone.  It was if no one wanted to admit what was going on.

I arrived home and took the meclizine I was prescribed with  hope that they would make the horrible things I was experiencing go away.  I faithfully took each pill as instructed anticipating that soon I would be restored to a grounded and solid sense of myself and where I was in space.  But nothing happened.   If anything, my symptoms became worse.  As I cautiously made my way around my home everything I saw continued to bounce and blur with each wobbly and unsteady step I took.  I walked with my feet placed far apart in an attempt to find some kind of stability.  I groped at anything I could lay my hands on trying to find something to hang on to that would stop me from falling.  I couldn’t hold my head still and I felt like a bobble-head doll!  It was exhausting and frightening beyond words.

Still I continued taking the Meclizine but still nothing changed, it only worsened.  I called the doctor and made another same day appointment and once again drove myself to the clinic where I saw a physician’s assistant that really didn’t offer much help other than to instruct me to continue with taking the meclizine.  I put myself through that ridiculous drive again only to still leave without any sense of understanding of what was happening to me.

Once home I sat in shaken silence going over the course of events that led to where I was at that moment.  I tried to find some kind of clue, anything that would provide a starting point to finding answers.  Could it be the medicine I was given?  With that thought in mind I made my way to my computer and Goggled the word “gentamicin”.  What I found proved devastating and deepened the wounds I was beginning to feel inflicted on my soul.  Trying to remain still enough to read anything on my computer screen was physically and mentally consuming as the words and images on my computer screen appeared to move around and jump off the screen.  I could not keep my eyes still enough to read what I had found.  I ended up placing a piece of paper against the monitor to cover up the rows of lines I had not read yet.  I constantly felt as if I were falling out of my chair and continually fought the sensation that I was being sucked out into outer space.  I could not find any sense of grounding and trying to read only intensified this.  In spite of this I fought with everything I had left and what I was able to read stabbed me with a sense of fear I have never felt before.

Everything I was able to read described my symptoms exactly and in my mind there was no doubt that I had become a textbook example of the descriptions of side effects that can occur with the use of gentamicin.   The very last line read “and the damage is irreversible and permanent”.  Permanent – forever, always, never to go away, here for good…  What I learned was just the beginning of what I was going to learn about  “ototoxicity”, oto meaning ear, toxicity meaning poisoning….

Posted in Disability, Independent Living, Inspiration, Motivation, Non Fiction, Rehabilitation, Research, Self Help, Transition, Vocational Rehabilitation | Tagged , , , , , , , , , , , , , , , , | Leave a comment

“Why can’t I stand up?  What’s happening?  Why does everything look like its moving?  I can’t tell where I am!  I don’t know which way is up!  I can’t stop myself from falling!  Oh, someone help me….” 

There was absolutely nothing that my life could have done to prepare me for what I was feeling at that moment I fell to the floor.  There was nothing that I could compare it with.  It was the most frightening thing I had ever faced.   There was this sense of complete emptiness – that everything I ever perceived had disappeared – I felt like an empty shell that was being filled with a foreboding sense of fear, total disbelief, of utter non-comprehension. I was dumbfounded, bewildered, shocked.  It was as if I had dropped into a void that contained nothing.  All that I had I had become had left me in an instant and replaced with … nothing…  nothing familiar, nothing but different and foreign.  My life had become a foreign language…  I had fallen into a nothingness land I knew nothing about.  There was only me, like a baby – yearning for someone to take care of me only there was no one there to take care of me.  I had fallen with a whole bunch of what used to be’s that was no longer allowed to be used – everything didn’t fit anymore.  This is where the foundational construction of the noise began.  It was here that I had to begin constructing a whole new world, one without a blueprint from which to follow…

“HELP!!!” “Who can help me?  Is there help?  Oh my God, what if I can never walk again?  What if this is something that will never go away?  How the hell do I deal with that?  Oh my God, Kris…  What about Kris?  What’s happening?  I can’t stand up… I can barely crawl, why do I keep falling?  Why won’t anything stand still?  What the hell is that ringing in my ears?  I have to pee…  I can’t walk….    Is this what it feels like when you are dead?  Am I dead?  What’s happening?  I have to get to the hospital, I need some help…”

Somehow I made my way to the bathroom and could barely stay seated on the toilet.  I could not hold my upper body upright and my head bobbled all over the place.  Nothing would stay still and everything I looked at moved.  I could not stop my head from shaking and everything wiggled and blurred.  It wasn’t like seeing double, it was as if I were looking through a wall of water – like that at an aquarium –everything floated in a three dimensional space.  Even the walls were moving and tilting.  There was no way I could walk seeing like this.  There was no way I could walk.

“I have to get myself downstairs…”  I needed a phone and ended up half sliding, half falling down the stairs on my butt and crawling while tumbling to find the phone.  I kept falling over and running into things.  I finally found the phone but didn’t know who to call.  I laid there on the floor frozen in fear.  “I have to call my doctor, but what’s the number… Oh no, I have to get to my address book… oh, I have to get to the kitchen….”  On my hands and knees I crawled over the hardwood floor through the dining room and into the kitchen falling over several times.  There was nothing I could do to stop from falling over.  “ the address book is on the counter…how am I going to reach it… oh, God, please help me….”  I crawled up to the counter and leaned my body against it.  Using my free arm I attempted to reach up to grab the side of the countertop to try and pull myself.  “I’m almost there….”  I was half way up when I fell flat on my back to the floor.  I laid there with a choir of desperate screaming thoughts rushing through my head.  None of them made any sense to me.  All I knew is that I had to get to that address book.  Believe it or not, it never occurred to me to call 911…  “Okay, I have to try this again, I have to reach that book”.  I leaned myself against the cupboard again, reached above my head, found a tight grip and pulled myself halfway to where I could grab the countertop with my other hand and finally with tears streaming down my face pulled myself up …  “finally, I have the book…  oh God, the phone – what the hell…. I left it in the livingroom!”  Then, I lost my grip and again crashed to the floor where I began to sob.  I laid there on the kitchen floor too scared to move.  It took several what felt like a lifetime minutes before I could gain the mind and strength to go back to the living room to use the phone.  I mustered myself back up to my knees, grabbed the counter top and pulled myself up onto my feet.  I grabbed the address book and began to fall sideways.  I tightened my grip to the counter top to the point of thinking I would pull the cupboards off the wall.  There was no way I could stand upright – I had absolutely no control of my body.  I stood there hunched over the countertop trying to think of a way to get myself and the address book to the phone.  I tucked the address book into my pajama bottoms and held on as I somehow managed to walk along side the countertop until I reached the end of the cupboard and to the doorway leading into the dining room.  I reached for the back of one of dining room chairs and pulled myself to it only to have the chair slide and me falling onto the hardwood floor.   Feeling completely helpless I again laid on the floor with tears of terror streaming down my face.  I just could not make any sense of what was happening to me.  It felt surreal, I felt unreal.  Battered and bruised I somehow found the strength to continue to make my way to the phone.  I pulled the address book from my pajamas and flipped through the pages to try and locate the clinic number but found I couldn’t hold my line of vision still.  Everything I was seeing bounced and blurred and I could not control my eyes from bobbling around in my head.  I slid myself along the floor and leaned against the wall to attempt to stabilize myself.  I had to keep myself as still as possible in order to see anything remotely clear.  This was impossible.  Somehow, through trial and error, pressing one number at a time, I was able to dial the number to the clinic.

“Something is terribly wrong!  I can’t stand up!  I can’t see!  What’s wrong with me?”   The receptionist listened as I described what was going on and placed me through to triage where I desperately asked for help.  I was given an emergency appointment for that same day.   Ridiculous as it sounds, I drove myself the 50 miles to Madison to get this appointment.  The drive was beyond anything I had ever experienced.  As I look back on this I absolutely should not have been behind the wheel of a car.  But in my mind at that time this was the only thing that I could think to do.  My partner was not home and I knew better than to call him….

Before I could leave for my appointment I had to go back upstairs to get dressed.  The climb up the stairs was actually a crawl and with each reach towards the steps I would flop onto my side and slide down.  I grabbed the railing and by hanging on to it pulled myself to my knees and in this kneeling position worked my way to the top of the stairs.  From there I crawled to the bedroom still falling over and crashing into walls.  By the time I reached my bedroom I was exhausted and so afraid.  I somehow found something to wear and to get dressed I laid on the floor and wiggle myself in to my clothing all the while feeling a complete disconnection from my surroundings.  I tried sitting up to tie my shoes only to fall over when attempting to reach down to grab the laces.  I kicked off those shoes and worked my way into a pair of pull on’s.  “Oh for God’s sake, now I have to go back down the stairs and get out to my car!”  With a sense of strength that came from who knows where, I repeated my way down the stairs, hanging on to the railing and sliding down the steps on my butt.  To get to my car, an older model Ford Bronco, 4×4, 5 speed, I walked along side my front porch and hung on to it to keep myself from falling to the ground.  Once at the end of the porch I found my vehicle to be about three feet from my reach so I reached out and just let myself fall to the hood.  I grabbed on and then went around the front to the driver’s side door.   The body of a Bronco is elevated so to get into it one has to grab the steering wheel for leverage and sort of jump into the seat.   Once I reached this point I froze in fear of attempting this feat but all I knew is that I had to get to the doctor to find out what was wrong.  So, I stood there with the drivers side door open, holding the steering wheel and with everything I had, pulled myself into the car only to fall over sideways into the passenger seat with the stick shift jabbing into my side.  Still, rather than call for help, my habituation to getting help on my own kicked in and I grabbed the steering wheel, pulled myself up behind it and held on.   Putting the key in the ignition, my foot on the brake, I pressed in the clutch, started the Bronco up, and blindly backed out of the driveway.  Once on the street I thought to myself, “this is crazy, how will I ever get there like this?”    Believe it or not, I could not find an answer to this and continued on with determination to find the help I needed.  I put the Bronco in first gear and began a 50 mile drive to the clinic.  As I drove, the road before me looked like a multitude of roads all trying to merge into one.  The pavement seemed to move and all I could do was to concentrate on where I thought the road might be.  I could not gaze far beyond the hood of my car because I could not discern what was up ahead.  So I slowly worked my way using my memory of the roads.  I truly believe the only way I was able to get to and from the clinic was the fact that I had driven those roads a countless number of times and the route was somehow ingrained in me, that and divine intervention.  I stayed off the main freeways and traveled my way to the clinic through back roads and low traffic city streets.   By the guiding grace of God I made it to the clinic without hurting myself or worse yet, someone else.

That journey took forever but I made it to the clinic.  By way of sheer determination and reaching out to grab onto whatever I could find from my car to the entrance of the clinic, I made my way to the appointment desk.  I stood there, my body literally shaking from the experience of my drive coupled with not knowing what was wrong with me and not knowing where I was in space.  I had no concept of where my feet where.  The only way I could tell what was up or down was by trying to connect myself with the vertical lines of my surroundings, even though my vision was so messed up, I was able to make this first adaptation.

As I took my place in the waiting room I could not hold back the tears and fear of what I was experiencing.  With a foreboding anticipation I waited for my name to be called.  Once it was, in a swirling maze of unfamiliar territory, I wobbled my way to the nurse, desperately grabbed her arm and together walked an unsteady and unsure path to an examination room.  The nurse asked what I was there for and I told her what I was going through and silently wondered how she could not have determined this after the walk we just took to the examination room together.  I explained to her that I just had surgery that I had developed an infection, was in the hospital, and was on antibiotics and that that morning I woke up as I was presenting myself to her now.  The nurse took my temperature, my blood pressure and wrote down my explanations.  The doctor came in and examined me and determined that I must have an ear infection and that it was causing me to feel “dizzy”.  I explained to him that it wasn’t “dizziness” I was experiencing but rather a lack of being able to sense where I was in space.  I also recall questioning the doctor about having any kind of infection after being on the antibiotics I had just completed.  However, he maintained his position and I was sent off with a prescription for Meclizine, a motion sickness medication and suppressant of the vestibular system.  I filled the prescription at the clinic and reversed my way into the incredibly frightening drive back home.  Mixed with the swirling presentations what my drive was throwing at me was again, a feeling of unshakable impending doom, that feeling that things were never going to be the same again.

Posted on April 11, 2013 by Cheryl Schiltz Photography | Leave a comment