The Verdict

Chapter Eight

The Verdict

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

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

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

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

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

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

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

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The Final Diagnosis

Chapter 7

THE FINAL DIAGNOSIS

          Up to this point from previous blogs you already know what happened:  The fall, the drive to the clinic, the bouncing and blurry, the feeling of outer space, and a place of fear unlike any other.  With all this in mind there also had to be a final diagnosis of what was really wrong with me.  In December of 1997 the next stop was with an ear, nose and throat doctor, an ENT.  So, with my Mom driving, off to the expert I went with an silent overwhelming recollection of the words I read just days before, ototoxicity, poisoning, permanent.

          Once at the clinic my Mother helped me to the reception desk and we made arrangements that she would wait in the car.  From there I was escorted to an exam room full of the strangest looking equipment I’ve ever seen.  There was an exam table – that I figured out, it was the other equipment that puzzled me.  Attached to the wall in front of the exam table was a black box.  There were screens, things that looked like torture devices, and a mass of people waiting to use them on me.  Have to admit, I was a little apprehensive about what was going to happen…

          Escorted to the exam table and assisted to take a step up, I took a seat.  The doctor stepped in and away we went with taking a deeper look into why I was the way I was.  The exam began with a look into my ears.  I was asked to follow the doctor’s finger left to right and up and down.   I couldn’t track the doctor’s finger without my eyes wiggling in my head as if they were connected to Slinky springs.  That I learned is nystagmus, the inability of the eyes focus to track anything. 

          I was instructed to lay down with my head hanging over the end of the table.  The team asked me to sit up, then lie back down, then back up, then back down.  What a scene that had to be because each up or down almost threw me off the table.  I began to cry, I was so scared…

          In a laying down position, again with my head hanging off the end, I was asked to move my head side to side and up and down.  This set off the fall off the table alert.

Then the lights went out.  I damn near fell off the exam table, there was nothing to orient myself to in the blackness that surrounded me.  In the dark, with a white knuckled grip on the table and assistants holding me up I was asked to look at the black box on the wall.  A stream of words began moving across the screen.  I was asked to read the words as they moved left to right.  I couldn’t do it – the Slinky on my eyes went back into action.  I asked why they were doing this to me getting a response they were testing my eye movements.  No shit Sherlock that I figured out, my question was why.

Then the strangest test of all.  Lying back down with my head in the overhang, with a vomit bucket at bay, warm air was streamed into my ears.  Nothing happened other than feeling the air in my ears.  This was repeated with cold air, again, nothing.  Then the test was repeated only this time with warm and cold water.  Nothing happened so I asked what that was all about.  I was told that if I had any vestibular functioning that I would have been so dizzy I would have thrown up, hence the readiness to catch it.  I just laid there with that ominous feeling of dread closing in on me again. 

The tests were over, I was escorted to a chair, and every one left the room.  I was left alone wondering what just happened and needing to use the restroom.  I got up and in my wobbling mess opened the door to see a nurse.   I asked her where the restroom was and without an offer to assist made my way.  When I came out I saw a bouncing blur of my ENT doctor.  I leaned against the wall and asked him if he had any idea what was wrong with me.  There standing in the hallway gripping the wall to stand as still as I could, I was given the worst news in my life. 

Posted in Aminoglycosides, Beginnings, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Gravity, Identity, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, resilence, Self Help, Sensory Substitution, Spirit, The Noise of Disability, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , , | Leave a comment

How it all Started – 1995 -1997

Chapter Six

How it all Started

It was in 1995 and 1996 when I started experiencing complications with my menstrual cycles.  The pain was so bad I couldn’t get out of bed for the first two to three days.  I relied on pain pills to knock myself out so I didn’t have to feel anything.  I endured this for well over a year when finally I had enough.  I began a search for a cure in hopes of finding a way to end the interruption this caused my life.  After several consultations and second and third opinions, surgery became the apparent cure and I was scheduled for a hysterectomy.  On October 20, 1997, at the age of 39, the surgery was performed.

I woke up from the surgery in excruciating pain, the worst I’ve ever felt.  I knew the surgery wasn’t going to be easy and pain was to be expected, but this was off the zero to ten charts.  I was given medication to ease the pain.  In a daze I heard my then partner (I’ll call him SFB) screaming at the nursing staff for, who knows what.  He was escorted out of the hospital leaving me mortified.  This is a whole other story.  I’ll get to that later.

After five days I returned home armed with antibiotics, pain pills and instructions to call if anything changes.  I was tired, sick, and worn out from the ordeal I had been through.  All I wanted to do was rest in quiet silence. 

Once home, in my attempt to recuperate, I was mostly at own devices to get what I needed.  SFB’s interests were positioned in his role as a musician preparing for an upcoming awards show.  I put up with the minimal help and I did what I always did, just do it myself.

Even though I had just underwent major surgery and released from the hospital a little over a week prior, I accompanied SFB to the awards show.  It was during the celebration of their big win that I began feeling warm.  I took refuge in a booth, took more pain pills then I probably should have, and just wanted to go home.  It was on the insistence of others that SFB take me home.  By the next morning I was burning up and literally couldn’t stand up straight or sit because of the extreme pain I had in my lower abdomen.  It was unbearable.  I was horrified when I called SFB to come home from work and drive me to the doctor, he felt I could drive myself and wouldn’t come home.  The pain was so intense that I knew I couldn’t drive myself.  It’s funny how in this instance I called for help but when I woke in a wobbling mess, I didn’t…  Not sure what to think about this…

I called my Mother who along with my sister-in-law, Mary Kay, dropped what they were doing and drove in to help get me to the clinic for an emergency appointment.  They felt the urgency I was in and disgusted that SFB wouldn’t help.

In the elevator on the way to the fourth floor I felt something in my body burst and a huge pool of horrifically smelly blood ran down my legs onto the floor.  Someone brought a wheelchair, I got in it, and Mom and Mary Kay rushed me to a restroom where we attempted to clean me up and replace hygiene pads with several more to soak up the blood.  Then we went to the clinic.  I felt like I was going to die…  Because I as a “fit in” patient it was taking longer than usual to be seen, even in the state I was in.  As time went by I became more and more ill.  The receptionist alerted a nurse to tell the doctor that I was in dire need of being seen immediately.  A nurse took my vitals while I was in the waiting area, they weren’t good.  What happened next made me feel so insignificant when I heard the doctor, scream at the top of her lungs saying to the nurse, “I will see her when I am damn good and ready!”  Everyone heard it.  Embarrassed, the nurse returned to the waiting room and along with my Mom and Mary Kay sat with me to offer comfort.  Other patients who were waiting could see how ill I was and offered to give up their appointment time so I could get in to see the doctor as quickly as possible.   This, I believe, was a life saving offer and I am forever grateful for that kindness. 

I was hurried to an exam room where the doctor did a quick exam, and the next thing I remember was in a hospital bed hooked to tubes of antibiotics and pain killers.  Because of a huge blood clot that had formed after my surgery I had developed a serious post operative infection.  I was the sickest I have ever been and, in danger of losing my life. 

I spent 10 days in the hospital on a regimen of high powered antibiotics, clyndamicin and gentamicin.  Invasive, painful vaginal ultrasounds were performed to monitor how much the clot was shrinking.   I endured these tests several times and even packed with pain medication the pain was excruciating, driving me to tears.    

Soon after being admitted, just outside my doorway, I heard a very heated argument between two doctors.  One expressed strongly that I should have surgery to remove the clot, the other stood ground that I remain on antibiotics.  Antibiotics won. 

My family, friends, and co-workers stopped by.  I received flowers and cards.  SFB visited once.  On her first visit, one of my dear friends, Linde, walked in, stopped in her tracks and said, “Cheryl, seriously, you look green”. 

After 10 days I was released from the hospital but not before a crushant catheter was inserted into my forearm where through a vein a long thin tube was inserted up my arm and into my chest.  This was so I could continue taking the antibiotics at home, by myself.  It was a painful procedure.

SFB wouldn’t take the time so at discharge my friend Linde arrived at the hospital to get me, however, rather than take me home she drove me to my Mother’s where I continued to recuperate.  There I knew I would be cared for gently and consistently.  I remember falling into sobs on our way when on the radio I heard Martina McBride sing “Only Angles Know How to Fly”.  It was so fitting to the situation and to the relationship I had with SFB.  As I think back to that moment, perhaps this was a message from my own angel. 

I spent 8 days with Mom, who herself had health problems.  She had a heart valve problem and COPD making it difficult for her to get around.  Even so, she took good care of me.  While I was with Mom SFB called a few times and came to visit once. 

During one of the few calls from SFB I let him know how hurtful his lack of presence or caring was.  His reply?  “All you do is sleep so what can I do, hold your hand while you sleep?”  I said, “Yes, that’s what someone who cares would do.”  He hung up.

I did sleep most of the days away, part of the healing process.  Mom made homemade soup and I tried to eat but could get little down.  All I really wanted was toast with cinnamon and sugar on it and tea, and my favorite comfort food, mashed potatoes with chicken gravy.  Mom made these taste so wonderful and still today they’re my feel better comfort foods.  On Christmas Morning 2008, Mom passed.  I cannot express how much I miss her, everything about her. 

For 8 days Mom helped hook me up to the same antibiotics I was given in the hospital.  We set two alarm clocks in intervals of eight hours to prompt us to connect the bags, back to back, one after the other, and wait for them to empty.  The whole process took over two hours.

We were instructed to store the antibiotics in the refrigerator so we had to let them warm up before starting the drip.  Even so, it was so cold going in and each time sent chills throughout my body.  After a couple of days of this regimen, I started feeling terribly nauseated and then started vomiting every time I completed the dosage.  This became so severe we called the clinic to explain what was happening.  We were given instructions to stop the clyndamicin but remain on the gentamicin.  Little did I know that this instruction was going to change my life, forever. 

Because the nausea and vomiting was so bad I was prescribed an anti-nausea medication called compazine.  Side effects of this drug are nightmares and yes, I had the worst nightmares of my life.  The dreams were so real and the frights so intense, that over and over again I cried out for my Mom’s help and crawled into bed next to her.  We made another call to the doctor, this time the instructions were to stop taking the compazine but continue on with the gentamicin.  The nightmares went away but the nausea and vomiting continued, subsiding after a few days.  Then I began feeling unsteady, my ears felt “full”, and my vision was strangely blurry.

I became quite proficient at IV administration when after seven days a home health nurse arrived to remove the catheter in my arm, thankfully, not nearly as painful as putting it in.  By this time I had been on the antibiotics for 17 days and could finally stop and admittedly reluctant, able to return home.  I arrived home on a Sunday and the following Wednesday woke up, went to get out of bed and fell into Subject Zero.  This was in November of 1997. 

Posted in Aminoglycosides, Beginnings, Biomedical Research, Disability, Discovery, Gentamicin, Gravity, Inspiration, Lessons, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, re-educated attention, Rehabilitation, Research, Resilience, Self Help, Sensory Substitution, Subject Zero, Tongue Display Unit, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , , | 5 Comments

Pills, Hope, and a Frightening Discovery

Chapter Five

Pills, Hope and a Frightening Discovery

I looked to the meclizine in hope it would take everything away.  I faithfully took each pill as instructed in anticipation that my sense of knowing where I was in space would be restored and I would regain the embrace of a grounded and solid sense of myself.  But nothing happened.  Rather, the symptoms worsened.  Working my way around my home became frighteningly different and I couldn’t find anything familiar.  With each wobbly and unsteady step I took the bounce and blur of my vision intensified.  My feeling of being disconnected grew stronger.  I started to walk with my feet far apart, I guess in an attempt to add some kind of stability.  My upper body was stooped forward.  My head dropped and bobbled with my chin almost touching my chest.  I could only look at the ground in front of me When I tried to walk because looking up and ahead of me was a complete mass of blurring shapes and colors.  To provide some kind of idea of how this looked, imagine using a video camera while sitting in a boat bouncing against waves, then, watch the video.

I groped for anything I could lay my hands on to find something to grip to try and stop the never ending feeling I was falling.  When I sat, or walked, my head moved around like a bobble head doll which made the bouncing and blurring of even worse.  It was exhausting and frightening beyond words. 

With my symptoms growing stronger  that impending doom pressed down upon my shoulders even harder.  I called the doctor to report what was going on.  In tears I told the nurse how things were getting worse, I was so scared.  I was scheduled for an appointment the next day.   Again I drove myself to the clinic, I guess by this time I stopped thinking about how stupid this was.  My only thought was how I wanted everything to go away.  This time I saw a physician’s assistant that couldn’t offer much additional help other than to continue taking the meclizine.  I sat at the opposite side of a desk, gripping it to stay upright.  My tears where uncontrollable and the PA sat there not knowing what to do.  She knew me from my chart, not from who I am and could only offer advice based on what she read.  I remember she had an artificial arm and hand and I couldn’t stop looking at it.  Even through my distress, I thought how remarkable it was that in spite of her disability she was doing amazing work.  It also made me feel how artificial my life had seemed to become.  I wondered if there was a prosthetic that I could use… 

Instead an answer or an understanding of what was happening to me I was sent away in deeper confusion and fright.  Somehow I made it home, completely exhausted.  A loop of constant thought gripped me as over and over I dissected the course of events that led to where I was at that moment.  I tried to come up with some kind of clue, anything to provide a starting point to find answers.  Then it came to me, could it be the medicine I was given while I was in the hospital? 

I worked my way to the computer and Googled the word “gentamicin”.  What I found validated that feeling of doom that had been shadowing me from the moment I fell to the floor.  Trying to sit still enough to read words on the monitor was physically and mentally consuming.  Words and images were blurred and looked like they were moving around and jumping off the screen.  I couldn’t keep my head still enough to follow what I trying to read.  I put my left elbow on the desk and placed my chin in my hand to try to stop my head from bobbling.  I looked down and saw a piece of paper.  I grabbed it with my right hand and put it against the monitor to cover up everything below the line I wanted to read then slid it down when I reached the end of one line to go to next.  This made it a little easier because it kept all the other lines hidden and helped to keep my eyes on the line I was trying to read.  How I came up with that I have no idea.  If you try this you’ll know what I mean.

Imagine the position I was in at my computer.  Chin in hand, paper on the screen to help me read.  However, I also felt like I was falling out of my chair in a sensation of being sucked into outer space.  I slid the chair as close to the desk as I could, wrapped my feet around the legs, smashed my chest against the desk and in this squished position, head in hand, paper on the screen, what I was able to read set fire to a sense of fear I have never felt before.  Everything I read described my symptoms to a tee, and in my mind there was no doubt that I had developed the worst of the side effects that can occur with the use of the antibiotic, gentamicin.   The very last line I read said – “and the damage is irreversible, permanent”.   Permanent – forever, always, never to go away, here for good…  What I discovered was just the beginning of what I was going to learn about “ototoxicity”, oto meaning ear, toxicity meaning poisoning….

Posted in Aminoglycosides, Beginnings, Disability, Disability Noise, Discovery, Expressing It, Gentamicin, Gravity, Identity, Inspiration, Lessons, Living with a Label, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, Rehabilitation, Research, Resilience, Self Help, Spirit, Subject Zero, Thoughts, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , , | 2 Comments

A Band Aid, Partial Discovery

Chapter Four

A Band Aid, Partial Discovery

I put the Bronco in first gear and began a 50 mile drive to the clinic.  As I drove, the road looked like a multitude of roads trying to merge into one.  The pavement appeared to be moving and all I could do was to concentrate on where the road might be.  I’m certain the only way I made it to the clinic was the fact that I had driven those roads a countless number of times and the route was somehow engrained in me.  That and divine intervention. 

I tried to stay off the main freeway on my way to the clinic using as many back roads and low traffic streets I could recall.   However, from where I lived, the freeway was the route to take.  Still today, I cannot believe I made it to the clinic, and back, without hurting myself or worse yet, someone else.  All I can say is that I was seriously driven by survival.

Finally after what felt like slow motion forever, I made it to the clinic parking lot.  Even after what my mind and body went through to get there my determination to get into the clinic remained intact.  I slid out of the Bronco and worked my way to the clinic door by hanging on to whatever I could reach, cars, railings, trees, or the nothing that pushed me to the appointment desk.   I made it.  Then, as I stood there hanging on to the counter, my complete body began to shake from the drive and not knowing what was wrong with me.  I could no longer hold back the tears of what I just experienced.  I could barely say my name to check in, I was a flood of fear.

I felt my determination further diluted when the receptionist, in a daily routine like instruction, told me to take a place in the waiting room.  I looked at her with pleading eyes wondering how it was that she couldn’t see how difficult it was for me to walk.  In a place where I was holding some hope, no assistance was offered to get me to a chair, I didn’t ask either so, I continued on my own.  In dread and tears I turned around, placed my back against the receptionist counter, stopped in my tracks and waited for the room to stop moving so I could map out a way to get myself to a chair.  Not feeling a connection to anything, not even the floor, with my head bobbing up and down and sideways, pausing only to try to see through a blur of color and forms, made it to a seat and waited for my name to be called.  I felt the stares of other patients gathered upon me like a spotlight.  This was my first experience of stares by others, the first of many more to come… 

Waiting was terrifying torture.  I kept a white knuckled grip on my chair to keep myself from falling out of the seat.  I sat stiffly with my body crammed against the back of the chair and stared at the floor in an attempt to stop things in the room from moving and bouncing around.  When people walked in front of me their movement triggered a lost in space feeling and I almost fell from my chair.  I closed my eyes in an attempt to stop that movement, to hide the bounce and blur and even with the grip I had on the chair, my whole body flailed as if I had not a bone or muscle in it.  I had to keep my eyes open, I had to keep myself in a place I so desperately wanted to out of.

Finally my name was called.  I let go of one side of the chair, grabbed the other with both hands, and sideways I worked my way to a wobbly standing mess.  I stood there to work on another map to get where I needed to go.  Again I used touch, this time with my legs against empty chairs but that only worked on the empty ones.  There were other patients scattered in the row I was trying to navigate.  Some reached up to help, others backed away.  I felt like I was on a pitiful display.   Finally, I reached the end of the row and stopped.  With what had to have been a look of desperation of my face I reached out to the nurse, grabbed her and held on for dear life. Together we walked in my unsteady, drunken like, and unsure path to an examination room.    

Once in the exam room the nurse asked why was I was there to see the doctor.  I almost blew up thinking how she could not see why I was there!  I mean, after all she had me hanging off her body to get me to the exam room.  I just couldn’t comprehend this, however, I played along with procedure and told her that I recently had surgery, 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 and said the doctor will be in soon.   Then she left me alone in the same white knuckled position I held in the waiting area.  I couldn’t move.

After what seemed like hours, the doctor came in, examined me and gave his determination that I must have an ear infection and that was causing me to feel “dizzy”.  I explained to him that it wasn’t “dizziness” I felt but rather a lack of being able to sense where I was in space, of being disconnected.  I questioned his diagnosis of an infection because of all the antibiotics I had been on.   He held his position and I was sent off with a prescription for Meclizine, a motion sickness medication and suppressant of the vestibular system.  Take note – another milepost to the future…  I filled the prescription at the clinic and reversed my way into another slow motion drive back home. 

Mixed among the swirling, bouncing and blurring of everything around me, was an unshakable sense of impending doom, a feeling that my life was never going to be the same again.

Posted in Aminoglycosides, Beginnings, Disability, Disability is..., Disability Noise, Discovery, Gentamicin, Gravity, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Resilience, Self Help, Spirit, Subject Zero, Thoughts, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , | Leave a comment

Phone Call and Drive to Hell

Chapter Three

Phone Call and Drive to Hell

“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 same day emergency appointment. 

Now the really crazy thing…  I drove myself to this appointment – in Madison – a drive of over 50 miles.  Seriously, what was I thinking?  The drive was beyond anything I have ever experienced.  As I look back on this, I should not have been behind the wheel of a car.  But, at that time this was the only thing survival lead me to…

Before I could leave I had to get dressed.  That meant going back upstairs.  I sat there on the floor thinking, how was I going to do that?  Sitting there I began to map this out in my head.  First try was to crawl but each reach towards a new step I would flop onto my side or my belly either staying were I was or slide back down.  Then I thought about grabbing the railing; hanging on to it and putting my hand on the opposite wall I pulled myself to my knees.  It worked, and in a kneeling position made my way to the top.  From there I crawled to my bedroom this time leaning one side of my body against a wall.  It was at this point that I recognized touch of some kind oddly helped to partially stabilize me. 

By the time I reached my bedroom I was exhausted, bruised, and confused.  I’m not sure how I found something to wear, but I think it was the first time I decided stripes and polka dots went well together.   I dressed lying on the floor.  I wiggled myself into clothes encased in a horrible feeling of disconnect from my body and surroundings.  I tried to sit up to tie my shoes but fell over as I leaned to grab the laces.  I kicked those off and scrounged for a pair of slip on’s.  Then on my butt, I reversed my way back down the stairs.  Re-recognizing my discovery of touch, I made it to the front door touching  walls, furniture or anything along the same path.  There were open spaces void of anything to touch and the horrible disconnect reappeared.  I wobbled back and forth, side to side, my vision bouncing and blurring all over the place.  I either had to find something to touch or fall down.  I chose the touch and lunged myself towards the door with wobbled steps in a wobbled world.   I made it.  The prize was my habit of keeping my car keys next to the door.  Imagine the hunt for those! 

At that time I drove an older model Ford Bronco, 4×4, 5 speed.  It was parked in the driveway next to my house.  I froze at the thought of getting to it but not of driving it…  I mapped out my approach to the car.  With my hands sliding along and touching the front porch, I made it to the end.  Then I realized, the Bronco was about three feet from where I was.  With my touch gone, I stretched out my arms, took an uncontrolled step, and just let myself fall onto the hood.  I landed on my chest nearly knocking the wind out of myself.  In what seemed like slow motion, I held on to the Bronco and slid my way around the front of and to the driver’s side door.   I wondered if anyone saw me do this.  Apparently not as the local police didn’t show up from a call that I was going to drive drunk…

The body of a Bronco is elevated so to get into it I always grabbed the steering wheel for leverage and sort of jump into the seat.   Once I reached this point I froze thinking of attempting this.  With survival mode securely attached, all I knew is that I had to get to my appointment to find out what was wrong with me.  I stood there hanging on to the driver’s side door, holding the steering wheel and with everything I had, pulled myself into the Bronco only to fall over into the passenger seat with the stick shift jabbed into my side.  Still, rather than call for help, or panic, I continued on my quest to get help on my own.  I grabbed the steering wheel, pulled myself up behind it and held on.   After what seemed like hours, with hell bent conviction to drive to my appointment, I put the key in the ignition, put my foot on the brake, pressed in the clutch, started the Bronco up and backed out of the driveway.  Once on the street I thought to myself, “This is crazy, how I will ever get there like this?  Still, I couldn’t think of any reason not to begin the most intense journey of determination I have ever experienced. 

 

Posted in Aminoglycosides, Beginnings, Disability, Disability Noise, Discovery, Gentamicin, Inspiration, Living with a Label, Motivation, Non Fiction, Oscillopsia, Ototoxicity, Perception, re-educated attention, Resilience, Self Help, Spirit, Subject Zero, Thoughts, Tongue Display Unit, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , | Leave a comment

Bouncing – Crawling – Falling – Battered and Bruised

Chapter Two

Bouncing – Crawling – Falling – Battered and Bruised

On my butt I bounced down the stairs hanging on to the railing and sliding my other hand on the opposite wall, the only lifelines I could find.  I left the phone downstairs the night before and I all I could think was getting to it to call for help –   bouncing down the stairs on my butt seemed the only option I had, one by one.   With each bounce my eyes were filled with a blur of color and motion.  Even so, somehow I reached the bottom of the stairs. 

The phone was just around the corner tucked nicely in its cradle.  I pulled the cords and everything crashed to the floor.  Kind of like me…  There I was on the floor, phone in hand and I didn’t know who to call.  I just laid there.  “Oh shit, the address book is in the kitchen”…  I thought, “Who the hell puts their address book in the kitchen?”  What the hell was I thinking?  Why didn’t I call 911?  There’s a question without an answer…

Another kick of survival set in … From there, in a zigzag pattern, I crawled on the hardwood floor of my dining room, falling over, crashing into things that had morphed to obstacles.  Just the day before, those things were neatly and pleasingly in place.  I made my way through the dining room to the kitchen constantly falling over on to my sides, left or right, it wasn’t my choice.  I had absolutely no connection to my movements; my movements couldn’t make a connection to me.  Each time I fell thoughts reemerged convicted to… “The address book, it’s in the kitchen – on the counter… I have to get it… oh, God, please help me….”  I made it to the kitchen.  There I was, on my hands and knees, half of my body leaned up against the cabinets, battered from the journey.  Using my arm that wasn’t smashed against the wood I attempted to reach up and grab the counter-top thinking I could pull myself up to reach the book.  “I’m almost there….”  I was half way up when bash, I fell completely backwards to the floor.  I laid there – a choir of desperate thoughts rushing through my head, like mores code, dashdash dot dot dash slash dash dotdotdotdot dot dotdashdot dot.  I deciphered that I needed that address book.  Still, no real panic and believe it or not, it still never occurred to me to call 911… 

“Okay, I have to try again; I need to get that book”.  Once more, leaned against the cabinet, I reached above my head gripped the counter-top as hard as I could and pulled myself halfway up.  I grabbed the counter-top with my other hand and with tears streaming down my face I pulled myself all the way up.  “Finally, I can get the book… oh shit!  The phone – I left it in the living room!”  There went my grip and I crashed to the floor and sobbed.  I don’t how long I laid there before I gained the mind and strength to work my way back to my living room, to the phone.  But the address book, was still on the counter.

I worked myself back up to my knees, grabbed the counter top and pulled as hard as I could to get myself up onto my feet.  I grabbed the address book and started to fall sideways.  I tightened my grip on the counter to the point of thinking I was going to pull the cupboards off the wall.  Then I folded my upper half of my body on top of the counter, still with an iron clad grip, thinking of a way to get myself to the phone.  I mapped it out in my head.  I tucked the address book into my pajama bottoms, managed to slide myself alongside the counter until I reached the end to the doorway leading into the dining room.  Gripping each side, I leaned myself against the frame of the doorway, I reached for the back of a dining room chair hoping my hand would land on the backrest so I could pull myself to it.  I caught it but the chair slid and I fell onto the hardwood floor.   The rush of thought reappeared, dashdash dot dot dash slash dash dotdotdotdot dot dotdashdot dot.  I lay on the floor in tears and pain but I knew I had to get there.  Suddenly, I began to feel a foreboding that for some reason I had disappeared from myself, from my sense, my awareness, of where I was in space.  It felt surreal, I felt unreal.  Battered and bruised I pulled myself back up to my knees found strength to zigzag my way to the phone. 

Posted in Aminoglycosides, Beginnings, Disability, Disability Noise, Discovery, Gentamicin, Gravity, Identity, Inspiration, Non Fiction, Oscillopsia, Ototoxicity, Perception, Rehabilitation, Research, resilence, Self Help, Sensory Substitution, Spirit, Thoughts, Tongue Display Unit, Transition, trauma, Vestibular System | Tagged , , , , , , , , , , , , , , , | Leave a comment

Holy Moly – Where has the time gone?

            You’re probably wondering what’s been taking me so long to post another blog.  Well, it’s just been one of those days, or in this case, several days.  Life’s been good, but I’ve taken a lot of down time to reflect and let my next step come to me.  I needed to be quiet in whatever way I could, whenever I could.  That’s been my main task these past few weeks.  Then it came to me.

            I’ve had an Ah-Ha moment – a moment that all of a sudden put everything in its place.  My direction has changed to true north, to what I need to share with the world, with you.  I’m grateful you are hanging in here with me but please know that from here on everything changes to:

SUBJECT ZERO

tongue_3

A Woman’s Journey into

Silencing the Noise of Disability

Chapter One

The Perpetual Fall to Nothing

                When I opened my eyes everything seemed okay but there was this odd sixth sense something was missing.  I went to sit on the edge of my bed and it happened, a complete disconnect unplugged everything.  I later learned that my sixth sense became the missing link.

It was as I if I were pushed from a plane, no parachute or tandem buddy.  I just keep perpetually falling, smack dab to my bedroom floor.  I went to rise but couldn’t.  Then everything I had been familiar with disappeared as a barren cloak of zero completely enclosed all I had ever come to know about myself and my world.  There was nothing – no sound, no sights, no touch and no feeling – only a silenced, empty zero.  What I knew of my existence vanished along with every perception of what I thought my life was.  Everything ceased to co-exist.  I didn’t see anything familiar; I couldn’t see anything at all…  There was nothing in front of me, above me, behind me, below me, anywhere around me.  I didn’t hear anything, it was eerily and deadly quiet – there was nothing noise could be associated with.  Who I was to my environment and my environment to me took leave in an instant and was replaced with … nothing.  My existence became alien. 

Then the the thoughts appeared:  – What has happened?  Where did I go?  Where am I?  What is this emptiness?  Where is everything I know?  Why did it disappear?  Am I dead?  Then more thinking – A whole lot of thoughts began to ramble around until they reached the speed of Indy race cars racing around a track of what used to be.  Then the caution flag appeared taking me to a place where my use to be’s were no longer allowed to be used – I didn’t fit anymore, the race was over.  It was then that my empty zeroed shell started to fill with a foreboding thinking process of total disbelief, of utter non-comprehension; I was dumbfounded, bewildered, shocked, and frightened.

But somehow, I never really panicked.  How is it that I did not panic?  I just did what I felt I had to do.  All I can possibly attribute that to is my Wisconsin farm girl upbringing where everything fit so perfectly together and even if something dropped out of place the place it was in fixed it.  I automatically went into a state of mind thinking whatever it was that was happening to me could be fixed.  I went into survival mode even as I was perpetually falling into a very different world.

Unaware of the true essence of danger I was in; my primal instincts led me to just getting help.  That was the only part of my thoughts that that made sense, wven though I could not walk, crawl or stand or see anything clearly – my vision was a bouncing, blurring mass of color and shapes as if I were looking through a kaleidoscope. 

Then survival kicked in.  I did whatever I had to do to get to help. 

Posted in Beginnings, Disability, Disability Noise, Gentamicin, Inspiration, Non Fiction, Ototoxicity, paying attention, Perception, resilence, Self Help, Spirit, The Noise of Disability, Thoughts, trauma, Vestibular System | Tagged , , , , , , , , , , , | 2 Comments

Before getting back to the original story – one more “thought”

Not long ago my dear friend Greg from Colorado called me and I could tell right away something was very wrong.  Greg has much the same bilateral vestibular dysfunction and effects of it as I do.  The difference between my diagnosis and Greg’s is that doctors cannot figure out the exact cause of his vestibular loss, only that it appeared after a surgery and having been given antibiotics – but not gentamicin.  On the day Greg called, he had become overwhelmed by how the day, how his thoughts and his mixed up ability to physically and psychologically function, were challenging him.  He was stretched to his absolute “deal with it” maximum and was set to tears of anxious fear.  He left his desk, went to sit in his car and called me.  He admitted that his only thought of getting away from the noise was to call me because as he said, “you are the only person I know who gets it”.  His other option he admitted?   To get away from it permanently in a very permanent manner…  I’m so grateful he chose to call me…

            Greg has been the perfect picture of the noise of disability.  His has been getting louder over the past six or more years and although he admits things have gotten better, he continues to be haunted by his trauma filled yesterdays and his pain of today.   This happens to a lot of us who have transitioned into disability – the noise of what use to be and what isn’t any longer can torment us to oblivion or to wanting to get check out of oblivion.  Some days the noise lies dormant wrapped in a thought numbed mind.  Other days the noise rages beyond comprehension as our thoughts rage against our very being.

            I believe there is a misconception in the world of “thought science”; of the belief that we create our thoughts.  In truth, our thoughts create us.  So those thoughts of yesterday, of how it used to be, how it will never be again, limit our ability to be the creator of our present moments, of a present silence, of our present self.  They limit our ability to create who we really are.

            Greg found that by reaching out to others is one way of quieting the noise.  You have to talk about and give the noise away and let it know you are still the boss!  And Greg is the boss of his noise.  By expressing thoughts of yesterday we force them to take leave from the cruelty they place on our today’s.   Get them out, let them leave, and take a well deserved permanent vacation from it all. 

            Acquired disability and its trauma have a way of permeating itself within us as it worms its way into making it be the only thing about us.  Especially at the beginning of the transition when nothing seems to make sense and nothing feels the same.  However, the one thing we often overlook is that in reality, we – who we are as a person before the trauma, remains the same.  What becomes mixed up is our perception of our environment, our relationship to it, and how our thoughts and the filters they slide though that have set us up to understand our life, become keyed up to the point of near explosion.  That’s the noise.  A traumatized thought is the main section of that noisy orchestra I’ve referred to, and then other thoughts join in, then others.  They wander through mixed up filters, then more filters are made, then more what if’s and why’s are set to action.  It all combines into one giant non-stop traumatized movement of thought.  It leaves us weary, afraid and blocked to pay attention to right now and seriously wanting our body and mind back to what we had before because this right now sucks! 

We can stop that noise by recognizing and introducing a silent noise, kind of like a “white noise”.  It’s a silent noise of hearing our present moments, the noise that is necessary to our ability to relate to our environment in a direct, in the moment, perceptive manner.  Part of white noise is that of paying attention to what is directly in front of us; to just being with it and not fighting it.  It’s about paying attention to all the things that are working for us, to paying attention to every little, yet monumental, success we achieve that proves we are getting better.   Never discount that first little movement, that first milestone and the others that follow, that first taste of silence, and that beautiful person looking back at you in the mirror. 

There really isn’t another choice than to pay attention, not one that can help silence the “black noise” anyway.  That’s what I found I had to do to move past the black noise of learning I have developed seizures, had an aneurysm and brain surgery, and ototoxicity and  losing my balance.  I found I had to actively move beyond my thoughts that had become filled with disabilities and make my way to a right now state of mind.  I’m not suggesting this is easy or that it happens overnight.  I had to work at it, with it, and let it come to me.  A lot of this was discovered through the Brainport research I was involved in and the permanent residuals I have retained.  But it was also a big part of my self that was raised up through understanding what silence is.  I had to learn what role direction perception and paying attention in a re-educated manner plays in discovering the silence.  If I hadn’t learned all this I couldn’t be writing this.  I couldn’t be where I am, right now, right here sharing with you my present in the moment attention. 

            As for Greg, he’s discovering his silence; he’s composing his very own unique in the moment song.  I am anxious to hear his finished melody and so very grateful and honored to be his friend, now and always.  I’m going to call him, right now because that’s what this moment is sharing with me.  I really love being in these moments and paying attention to what’s right in front of me.   There are a lot of answers there and a lot of beautiful white noise silence.   

Bridge to the Other Side

Posted in Acceptance, Addressing it, Beginnings, Disability, Disability Noise, Discovery, Expressing It, Indentity, Inspiration, Lessons, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, re-educated attention, Research, Resilience, Self Help, Spirit, Thoughts, trauma, white noise | Tagged , , , , , , , , , , , , , , | Leave a comment

Address It, Express It and Silence It

           How many times have we sat and let painful thought take us away from the very moment we are in.  How many times do we allow those thoughts to remove us from the present of what is right in front of us in any given moment?  How often do we ignore the strides we make in any given moment?

Thoughts, they are powerful, they are leading and misleading, they are disruptive, detouring, limiting and scary and really noisy.  Thoughts are how we talk to ourselves; how we process things we don’t want others to know about.  Thoughts wander about in any way they wish taking us on journeys through what ifs and what was.  They hold us captive from escaping from what hurts us, limiting our ability to embracing what can heal us.

I remember how my thoughts controlled everything about me, my disability, my healing, and knowing now how they stole away my present moments.  Thinking of how bad everything was, what I used to be like halted my chances of moving forward into life as it is, and held me captive to life as it was.  Thinking myself silly only tied me to a life that had already passed by, it is gone, kaput, never to be witnessed again.  Ouch, huh?  My ruminating over what happened to me kept me lodged in a past that detached me from my purpose in the present moment. 

Our past plays a huge part in how we arrived to today.  Our education, our experiences, our community, our upbringing, all those things we went through helped us gain our knowledge and skills and perceptions we have about ourselves and our today.  Our past deposited into our minds what I call perceptual filters which become attached to our thought about everything we encounter.  Those filters set up our relationships with our environment and our present moments; of being present with those moments or lodged in the past.

Not all thoughts are bad.  We all think back to beautiful moments of days and times that have passed by, to moments of happiness, joy and love.  We have wonderful times sharing memories of days gone by with family and friends.  There are a lot of lessons learned and a lot of heart earned.  Those are fun and authentic places to put thought to. 

You know, at the beginning of my new beginnings, I had no one to talk to that could even remotely understand what I was going through, what I went through.  All I had was thought.  To look at me I seemed “normal”.  My disability is invisible, until I got up to walk.  With those wobbly uncertain steps I entered another societal and internal realm.  I lived in two parallel worlds, one of overall worldly acceptance, the other of pity, fear, and unfounded disability perceptions.  I had a hell of a time figuring out, where do I belong?  Sitting or wobbling?  I thought about that a lot.

Since my first introduction to disability in 1997 I’ve had two more handshakes I needed to initiate.  Sometimes I’m confounded in thought of how in the world can these things actually happen to one person in one lifetime!  I wonder if there’s anyone anywhere that has the same combination of differences as I do:  First, the unplug of my vestibular system, then a brain aneurysm and a craniotomy to clip the bubble it before it blew up all the way, and now, just to add another layer to the cake, I am the proud recipient of complex partial seizures.  What kind of three tier cake is that?  I think I’ll add whip cream frosting now, after all, three times a charm, right?

Thoughts, wondering, contemplating, wishing, ignoring…  but what about expressing?   How many of us actually go outside our internal processing and express what’s going on with us, in us?  How many of us actually let the noise out and open the escape route from hurting to healing?  How many of us actually know how to escape the noise, that there is a way to escape…  Is there a class on that somewhere?  Well, yea, and the instructor is our self.  We are the only person on this earth that can silence our thought filled noise. 

The first assignment is to recognize that our noise exists.  At first we don’t realize this but what happened to us is the instigator of the noise.  It’s the actual trauma that begins it all, it writes the first note of how we begin developing a very loud and mixed up, completely out of tune one hit wonder of traumatic noise.  One sour note leads to another, then another, then another and goes on and on until an escape route disappears from our sight and our heart.  Then it swallows us and keeps us in world of constant life limiting thought of why, what if, when, and will it ever end.

This is the noise that stays inside of us, the noise that wanders throughout our brain, our thought, our body, and everything about us.  Sure there are times when we seem to snap out of it through short glimpses of a present moment but then the power of that noise reaches up and takes us back to the past.   Back to thinking about the transformation the past has laid upon us.

There’s another assignment…  Recognizing how much our healing is dependent on leaving the past in the past.  That’s a step towards silencing the noise.  But how can that be done when the past is so terribly hurtful that it just can’t be forgotten?  I’m not suggesting forgetting, but I am suggesting beginning to pay attention the good, the beautiful, and the powerful, uplifting experiences of our lives in this very moment.  When I am present with that, I can’t help but notice how much more of the good there is over that one traumatic experience, well in my case, three.  But still, so much more good lies in my present moments that when I pay attention to them, there begins a new noise.  The beautiful sound of silence, of a healing silence.  

Addressing it, expressing it, embracing the good, paying attention to and recognizing the gift of our present moments, knowing that you are here, right now, doing amazing things in this very moment, ah… can you hear the silence?

Rolands Grad Party-Cherokee 124

Posted in Acceptance, Addressing it, Beginnings, Disability and Opportunity, Disability Noise, Expressing It, Identity, Inspiration, Lessons, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, resilence, Self Help, Spirit, The Noise of Disability, Transition, What's noise? | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments