What do I mean by “noise” – the “noise of disablity”?

 

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Have you ever quietly sat listening to the sounds of birds singing, of children playing, of music that touches your heart?  Have you strolled through a garden or prairie to marvel at nature’s colors, shapes and smells?  Have you squeezed onto a couch with your family to watch a movie you’ve all seen a hundred times?  How many times have you gazed at a sunrise watching and anticipating the day coming to life; sitting with a sunset as day fades away to evening stillness with warm breezes gently sharing the promise of a new tomorrow?  

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Lovely scenario’s, aren’t they????

Now, imagine not being able to sit without stability to listen to the sounds of birds singing or to music or children playing.  Your body fights your desire for stillness to enjoy the simple sights and sounds around you.  Your internal mind and body connections, although outwardly silent, are inwardly screaming at the top of their confused neuron connections fueled and moved by thought.

You are unable to stroll through that garden without assistance from a cane, and/or another person at your side.  You can’t really marvel at anything because your vision is bouncing all over the place and because it’s safer for you to keep your body bent forward and your eyes to the ground, you don’t see much of anything at all – unless you stop moving completely – but still, you can’t, you can’t even watch that movie.

Sunrises recharge fear of the unknown lying in wait of the new day and sunsets fill you with sadness of having not been able to be a part of the day like you used to.

There is no simple silence anymore, only perpetual noise of thought, worry, and conflict between what was and what is and what’s coming.  It’s a never-ending battle between memories and reality.  Imagine being encased in a huge sheet of bubble wrap and to try to work your way out is to pop the bubbles – It’s noisy as hell yet even popping the bubbles doesn’t set you free.  The noise from bubbles is the noise of your disability, your sadness, fear, anxiety, uncertainty, depression, grief, anger and more, wrapped tightly all around you, constantly in your face, and in relentless your head.

So the noise – it’s deafeningly loud.  It’s an unceasing, inconsiderate, no holds barred boxing match between who you are and who you still are, only different.

We end up fighting our self, against our self.  I didn’t understand that at all, and I battled the noise for years and years.  I tried to make it be quiet but there was so much of it that I could barely discern the simple silence of life because the battle going on between my mind, thoughts, and body was incessant, leaving no room for anything else but constant thought. 

 Sometimes the noise shows up still, but now, I know how to silence it, how to put it in its proper silent space.  My silence of disability arrived when I realized that all along, I had been the conductor of the noise…  I had gathered together my symphony of nonsensical music performed by out of tune instruments of thought, I had written the noise.  I conducted it.  All quite by accident you know – how was I to know that the noise was initiated by my very own self?   I thought it was contributed by everything and everyone else, not me!  But it was not knowing how to introduce myself to my disability and when I think about it, I only wanted to shy away from it.  But it stuck with me, working really hard to become friends.  But I wanted nothing of the sort – so, I put up a wall of noise thinking I could block it, and make believe it wasn’t there.  When in reality, the noise only made the introduction of acceptance impossible.  I was stuck in the noise listening only to what was wrong when there was so very much beautifully right.

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Bite of a label….

          The next couple of years were spent cleansing my life and moving thoughts to their prospective right places, either gently aside or thrown out all together.  I continued my advocacy rampage and stayed in contact with others who had been given gentamicin and were now living the same as I.  There was something gnawing at me though.

It was the bite of being labeled as “disabled”.

I want to suck you blaaaddd

            Hi, I’m Cheryl and… I am disabled – according to the label I was handed.  For me, that label only intensified the feeling of disability.  It was a label that once applied is attached with such force that it can never be removed.  Well, I refused to wear that label.

            I’ll tell you what, being disabled is tough enough but then to be adhered to a label and forced to live according to the ingredients added by something or someone else?  Really now, isn’t up to the person to add the ingredients, after all, I think I know best what recipes work for me.  Having a label places disability rights, needs, dreams and goals into issues and conditions to fight and lobby for.  Because of labels people lose their individuality and become an entity on which their very lives depend on whatever that label is allowed to provide.  Often, that provision is nothing close to what is really needed, that sense of inclusion with everybody else in an everybody else normal world.

            I don’t believe there’s a good human label.  Any kind of disabling label would direct a person into an immediate disadvantaged life.   Everything changes when you are labeled with something wrong or different with you; the way people interact with you, how they look at you, how they treat you and think about you.  There are stares of pity and even disgust that sear deep into your soul.  You can feel that pity and disgust and when you do, it changes how you feel about yourself.

Labels begin the process of separation from who you really are as a beautiful, unique and amazing person to living outside yourself in a place where everyone else has lost the concept of who you really are.  Labels plant you into another part of life where the light of life is dimmed and there is no seed of growth left to flourish.

            It is important to know that you will be defined under several different labels  – one’s you don’t get to define but rather are defined for you.  These are the labels used by medical professionals, support agencies, Social Security, Division of Vocational Rehabilitation, Independent Living Centers, Aging and Disability Resource Centers, health and other insurance agencies and many other service providers.  These professionals use labels as part of their “qualification” process.  And each has a very different understanding and definition of the word disabled and or disability.  These folks look at what’s wrong with you in order to review their guidelines to determine how sick or disabled you are to determine what therapy, equipment, and meds to use, your eligibility to receive Social Security Disability Insurance, basically, any services you may need or could receive to assist you in rehabilitation, and hopefully, independence.  I’ll talk more about this later as it deserves its own spotlight.

Then there are the labels society uses.  These are the ones I think really stink because the general public perhaps unknowingly feel they have the right to place us in places we certainly are not.  The general public really has no clue to what our conditions are, what it means to us, does to us, and makes us feel.  It’s the old school way that people think – if you are “different” you are not normal.  Can someone please tell me what normal is????

Labels file us under the category of which it stands for, not for which stands for us.  If there is anything you take away from this blog, please let it be that “labels are for soup cans, not for people”. (A quote I heard from one of the voices from “Stories across Wisconsin”, during a Self Determination Conference sponsored by the Wisconsin Board for People with Developmental Disabilities, http://www.wi-bpdd.org/).

Labels that define health conditions define compensation, acceptance, motivation, attitude, will, thinking patterns, interactions, and simply, how we get better.  I really believe that labels help set the stage for how people with acquired disabilities develop a personal expertise to embracing and living with their new normal.

Labels set the stage for the definition of condition.  You can Google, Bing, YouTube, and for us old school folks, look things up in a dictionary.  What will you find?  A label!  A definition!  A set point!  Your supposed normal…  Well, guess what?  Yes, our conditions all have a name, they just have to.  There is a definition to our conditions, they just have to.  There is a set of descriptors of how our conditions affect us through a medical model frame.  What is important to remember is that our conditions do not define who we are!  We do that ourselves and do it with our own flair, decisions, spirit, strength and even sense of humor (yes, you have one…), we do it through our own self.  Please don’t let your “label” define you – let you define you.

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No more sacrifices – a “partner” disappears…

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My reflections continued as I gazed over my life experiences.  I discovered that I had consistently left behind my very own self in order to keep someone else happy by trying to fix all their problems, which I was certain I could do.  Why shouldn’t I when all I have had taught was to do just that…  Without revealing unpleasant details of my childhood past, suffice it to say that I was taught to take care of things because everyone “needed” me, as well as being forced to be needed.   This gaze over my life awoke an understanding to why I maintained an attraction to those who have problems.  I did so because what I had been taught and exposed to in my so called formative years was to help keep things together and that noise stuck with me all those years.  However, when my introduction to disability provided that sparkling awakening to what was important to me was indeed important to who I am, I awoke to paying attention to the real Cheryl, and I began to be faithful to who I was capable of being.

I now know that without myself, I cannot experience fulfillment.  I have seen my old self in others and was sad to see how they were tolerating the noise of a relationship obviously not right and most certainly not healthy.  Perhaps they, just like me, believed that is all they deserve, perhaps all they’ve ever been taught.  They were stuck in the noise too…  By observing them I observed an important lesson about who is the teacher in life.  I have had some amazing teachers in high school, and work, friends, and college, but what I awoke to was finding that I had been introduced to a wonderful teacher to show me new, fantastic and fulfilling lessons upon which I could begin an amazing journey. How cool is this – I learned that teacher is me.   It’s you too!

I began teaching myself to pay attention to no more self-sacrifices, no more denying myself of my spirit.  I began listening to my heart and I took it very seriously.  The paragraphs of wisdom my heart recited to me were paramount in importance to who I am.  It is a beautiful gentle voice that comes from within.  I began understanding the wisdom of my heart and spirit.  I never really listened to them much before; I couldn’t hear them because of the high volume of external and internal noise I was encased in.

My awakening taught me that I cannot change another, only they can change themselves.  I cannot fix people if they are not willing to fix themselves.  By trying to do so, it only enables them further and increases their dependence upon me leaving me without a place for myself, only in place for others.  I awoke to understanding that my partner was not in a place to be a partner at all…

I hold dear and with pride my ability to assist others and will not remove that from who I am.  I believe that is a divine gift given to be used.  However, what I have come to understand is that I am not responsible for others actions and I cannot fix them.  I am certainly a woman of deep love but have come to an additional understanding that I can love, by being a partner of conjoined goals and sharing rather than being the sole partner of total responsibility.  That is an aspect which is to be shared for by doing so the relationship can only flourish and grow with love, commitment, communication and inspiration.  This brings to life a love with heart and soul.  Commonality is paramount in a relationship for without it what can be shared together to allow for growth and how can personal truths be lived?  So many people are living simply by being rather than being together.  They pass their lives by each other barely beckoning their true existence for reasons only to avoid a crash.  What I have awoke to is that what I find truly fulfilling for myself is very important to me and to deny myself of these things is to deny myself a life of passionate fulfillment and joy.  Who I am, I love. I consider myself a warm and genuine person who can share easily and completely.  I am intelligent, I am considerate, I am playful, I am adventurous, I am responsible, I am hard working, I am spiritual, I am love, I am.  I owe it to myself and to my spirit, which God so graciously instilled within my heart, to be who I am and live according to my beliefs and ambitions.  There is much for me to do; there is much for me to share with others and with someone who finds my path a welcome walk to take.  I do not have this now and it sometimes that saddens me.  However, I understand that somewhere on this magnificent journey I am on will be that path that comes together with someone very special.   I need to take where I am to lead me to where I am destined to be.

Each life experience is just a starting point.  The walks taken on the paths chosen are there to assist in learning, to develop spirit, and to become whole to who we are.  Sometimes it takes adverse and difficult times to learn.  No one is born with complete and full knowledge of where they are going in life or what life is going to hand them.  This is learned by living it.  Lessons come to us each day, however, it is up to us to recognize the experiences we have as the lessons of life and to listen to them and learn.  What I have experienced through my past years, although difficult and trying, will always be dear to me as they presented me with what I have today.  I cannot hate, I cannot regret, I can only embrace the opportunities I have been introduced to.

I awoke to ending the noise of a bad relationship.  I awoke to a vision that a life’s partner is just that, a partner, one with whom you can share openly your inner truths.  Through openly sharing who you are and what is important to you, individuality is free to abound.  There is respect and admiration for each other’s individuality.  By sharing commonalties, individual beliefs are important and recognized, as partners need to indulge in them and live according to their beliefs with full support.  A life’s partner encourages, advises and respects the needs of the other.  It knows that harmony is in song sung by voices of individuality.

When a relationship, like mine was, is concentrated on conflicts and tension with thoughts of “is this what I want?” “is this what I need?”, I believe those questions are your inner truths telling you, no, this is not what you want and not what you need.  It is telling you that you are not living truthfully to who you are.  If the partner with whom you are attached fails to recognize, advise and respect those truths, they themselves are not living truthfully to who they are.  Take for example a partner’s dream of always wanting to become a writer, an artist, a doctor, or even a pilot.  Because of the conflicts and tension in a relationship of “is this what….”, the concentration and efforts required to pursue those dreams lie dormant due to being consumed by the noise of what is not there in the relationship. If it doesn’t feel right, it isn’t right.  There should be no guilt in wanting those dreams or feeling the excitement and purpose they bring to you, nor should there be guilt in pursuing those dreams.

If you are consumed with placating another to maintain harmony, all you are doing is neglecting your own harmony, writing a song with a lot of out of harmony noise.  A true partner recognizes the importance of the others dreams and encourages them to pursue them.  For by doing so the life of the other is enriched, this only enriches the life together.  There is no embarrassment with a life partner.  There is no stupid idea or silly pipe dream.  If it is real to you, it should be real to the partner and acted upon as an important truth to the us together.  Being true to yourself is being true to your life.

Thank God I awoke to finding that I am true and I am life……  No more out of tune relationships for me!           

Reflective Sound

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An Awakening

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I reached a place where reflection, embraced by close attention, opened my eyes, and heart to understanding my life where it was.  I truly had an awakening that shook into me a sudden realization of who I really am and what I really needed to do to reach a silent place.  I awoke to seeing what I needed to do to begin living according to the person I am and true to myself for the first time ever.

I saw what I had to do to obtain what I needed to fulfill the gaps in my life, those I was inappropriately trying to fulfill.  I began to see things for what they were along with what they had been doing to me which trickled down to others in my life.

My experience with disability, my “I often think”, did indeed firmly, yet gently open my ears to all the inserts of noise that I had placed upon me, within me, around me.  Coupled with the addition to the noise of disability, I wonder how I could hear anything good at all!  I knew deep in my heart that the noise of my transition to becoming different in abilities was the one and only noise that I would need to learn how to manage in volume.  That would come naturally and wonderfully later.  However, those other noises, I knew had to go.  They were taking up too much space in my relationship with myself and blocked from sight what I could do, what I was meant to do.

I was a woman who loved too much thinking I could fix all things for others, totally denying myself of my needs.  I let lie dormant my inner importance of how special I was to me, because someone unable to need themselves, needed me.

I spent considerable time reliving my life from childhood to the now and I have to tell you, it was really hard going there but through this I found a full understanding of why I was where I was at that time.  I could only do with what I knew…

I discovered how I had fallen into the “queen of fixing and doing all” lifestyle.  It was what I learned to do as it was forced upon me and taught to me through my life experiences.  Those experiences inserted distorted and noisy filters into my understanding of relationships with others and with myself, even my environment.  I stepped away from the elusive whys of where had I ended up, but the best part is, I figured out what I could, and had to do to reset those filters and move on.  This awakening embraced my strength and conviction anew to me.  By laying aside the worry about how others would react to me placing them into a second place to my needs, the love of the need to need me set my desires for being the person I really am on passionate fire.

I awoke to seeing how I had ignored other people I loved and pushed aside things I love to do because I was constantly taking care that someone was assured they had every opportunity to live out their dreams.  I had allowed someone to turn out the light on my dreams, to cover mine up with a dark blanket.  I pulled that blanket away and awoke to a realization of a deep absence of my dreams and wanted them back into my life.  I awoke to understanding how our inner passions are the complete essence of us.  The person I had let slip away for the sake of another was re-emerging and telling me to get on with it, to get on with the life I was meant to live, regardless of my introduction to disability!  This may sound startling to you, but I am thankful for that introduction for I believe it was this that began to move me to where I am today and become the best thing that ever happened to me.  The important and special things about me, about all of us, are so much a part of us and even though they were stilled in me, I felt them begin to rage and tell me that they must come out.

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Ah… Acceptance…

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I often think.  Those three words and what followed changed everything for me…  I read what I had written every day for weeks and weeks.  Each time I absorbed the meaning of what I read deeper and deeper until I finally understood how magical acceptance is.

I no longer just quasi coped, I no longer allowed my disability to consume me, control me or define me.  I stopped making believe.  I stopped letting the noise of disability and what I grieved for in left behind thoughts beat me up.  I moved away from the place where I was rudely introduced to disability and placed myself into the promise of the day.  I no longer felt trapped in those moments, moments that gripped me in fear, anxiety, and loss of purpose.  I released the trap, stepped out and began anew.

I began to control the changes I was going through rather than let those changes control me.  I discovered unique, yet effective ways to maneuver through my environment.  It wasn’t perfect by any means, but it was a whole lot less noisy when I didn’t think so hard about it.  I just moved within what was right in front of me and took control.

I developed an even more personal form of physical therapy, one that incorporated my real world and not a physical therapy lab and strange equipment.  I released the anger I held and embraced… magical acceptance.  I realized the incredible value, gifts, and assets I still had and the possibilities each of those would bring to my future.  I learned that although my disability basically affected literally all aspects of my life, there were ways to compensate, my way.  I took inventory on my relationships and myself – big inventory!  I stepped away from placing value on the status I held financially, professionally and all other pre-disability statuses, I looked inward to the value of myself.  I didn’t have to compare anymore I only had to repair by using what I already had – me.  I gently moved my disability to my side and in front of me replaced it with creative possibility, courage, belief and faith.  I turned down the noise and turned up my life.

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Divine Intervention…

ImageOne morning while sitting at my kitchen table wallowing in self-pity, my hand picked up a pen and began to write….

I often think “why did this happen to me?  Why have I been put in this condition?  What did I do to deserve this?”  I’ve thought about it for a long time and you know what?  There are no real answers to these questions.  It is as it is and I must learn how to live with it.  I must accept it.  For if I don’t, I’ll miss out on the many still remaining beautiful things life my life has yet to offer.

Yes, I have to do things differently.  I have to look at things differently.  I may not do some things as well, but I must still do them and I must still try.

Losing something so precious and secure has forced me to look at things as they really are.  Many things look so differently now – some I have never noticed before.  An awareness unknown to me before now surrounds me.  I can feel more, appreciate more, and I can love more.  I’m discovering things about myself I never knew existed.  It feels good as I am approaching it as if living a new adventure each day.  Many of these adventures lead to frustration, anger, sadness and fear.  But as I face each of these chapters I must be open to learn.  I can learn about myself, my feelings, my spirit, my heart and my thoughts.  Being faced with frustration teaches me how to be inventive.  Anger teaches me the ways of people and society.  Sadness teaches me to feel, it fills me with compassion.  Fear has taught me strength and endurance.  When you combine these, how can I not succeed in living like I never have before?  I’m still me, “just in a different skin”.

I must learn to love my new self and stand proud to be me.  I must continue to live as I am.  “Disability” is just a word – the only disability anyone has is in the mind and how the noise accumulates into what you let it tell you!  I must present myself to others as I do to myself, whole in heart, mind and spirit.  For others will overlook my “flaw” and see only a friend, a person, a mother, a co-worker, a lover, a happy and giving person.  I want to be unique, inspirational, motivational and respected.

I want the world to see that I can do anything if I want to.  I can succeed, I can learn.  Most of all I can live and love doing it.  I want to teach others that each of us has the will and ways to beat adversity and turn life changing experiences into the most incredible experience of their life.  It all begins with acceptance.  From there on, there are absolutely no limitations to what I can do.  I will do things as I always have.  If there are things I think I cannot do because of my change, then I will find a way to change the way I use to do it to meet the change in myself.

There will be those things I just cannot find a way to change, they can’t be.  Those are the ones I need to accept.  I must rejoice in that I once had the opportunity to do it and experience it.  Memories are just like photographs; I can bring them out any time and re-live the joys they shared with me.

Each change I make will bring me satisfaction and pride knowing I did it.  This will bring me the strength and endurance to keep going, keep learning, to keep trying and keep living.

Appreciation – you know, it makes me sad to think of the many people that have lost the appreciation of what they have.  They’ve lost sight of the bounty that they do have!  I have learned to never take anything for granted again.  Appreciate all you have and all that is yet to come.

Confidence is probably the hardest thing to learn for I have to try to gain it.  Confidence is intimidating.  I have to be out there, seen, heard and watched.  I must love myself in order to be confident.  This, again, begins with acceptance.

Bad days, man do I hate the bad days.  These are the days which make me feel helpless and seem to stop me dead in my tracks.  These are the days that squeeze me into feeling alone.  I sometimes feel there is no one anywhere on the face of this earth that can possibly understand what I am going through.  But that’s where I’m wrong.  There are others out there just like me who can feel my pain and sorrow.  Without the bad days I can’t appreciate the good days.  By that appreciation maybe the bad days won’t be so bad.  Who knows, I might even turn a bad day into a good day by – appreciation.

I read somewhere a quote “Laughter and tears are both responses to frustration and exhaustion.  I myself prefer to laugh, since there is less cleaning up to do afterward.”  Where there are tears, there is sadness.  Where there is laughter, there is hope.

There are two different ways to handle adversity.  One is to withdraw and envelop yourself in the constant noise of emotional, physical, psychological pain and bitterness.  The other is to pick yourself up and continue your life journey tune in to a new noise free direction.  Change can be a wonderful thing if you let it.  I’m in a “new life” now.  I must make the best of it.  When I am out, I must stand tall and proud.  I must smile, laugh, and be as I always have been.  People will then overlook whatever is “different” about me and maybe even see a little something in themselves.

I always try to remember, God does not give you anything that you can’t handle.  Guess it’s up to me to gaze into the eyes of people and share with them how wonderful life is.  No matter what.

                                                                        By:  Cheryl Schiltz

                                                                        Bilateral Vestibular Loss

                                                                        with Oscillopsia caused by

                                                                        the antibiotic Gentamicin

                                                                     © 1999

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Coping, discovering, finding a way…

       Although the things I’ve described so far seem dark and unforgiving, somehow I was able to cope with what happened.  I did indeed wander aimlessly through the confines of uncertainty and grief yet I still ponder what it was that allowed me to remain optimistic and positive about my future.  I still have no real answer other than to attribute it to my predisposing characteristics and survival – textbook I know.  How this mysterious form of attitude developed in me in spite of emerging from an upbringing that was positive in most ways, but also very sad and scary having been a product of divorced parents and a family filled with alcohol and other abuse.

Somehow I was fortunate to have found a way to always be a very optimistic, positive and future driven person.  That certainly proved to be the foundational glue to putting together the building blocks of adjustment and adaptation.  Today I really believe it was growing up in the wide open spaces of a farm, of endless discovery possibilities, of life simple yet incredibly bountiful.  There’s more to this and I’ll elaborate later.

With discovery in mind I set out to learn everything I possibly could about bilateral vestibular dysfunction.  I began looking for that elusive cure.  I searched and researched for every possible bit of information that would help me understand what happened to me.  I read every academic research paper I uncovered which was no small feat in light of the fact that reading was extremely difficult because of the way my eyes reacted to moving along pages of written material.  But I found a way… a ruler below the line I was reading and a piece of paper above the line I was reading.  That way I had just one line to “focus” on at a time.  Still it was challenging, but I did it.

In my search for answers I stumbled upon a support group of individuals who had experienced the exact thing I had because of the same antibiotic and everyone had same side effects!  I sent an email to the founder of the group, Lynn Brown, and I received a phone call from her the very next day.  We spoke for hours and Lynn, a former airline stewardess and now advocate, leader, and counselor, ignited a fire in me, fed my need for information, but most of all, assured me that I was not alone.  I became a “Wobbler”.  With Lynn, I shared an appearance on The Oprah Winfrey Show “Prescription for Disaster” as well as shared an amazing opportunity to go to Portland, OR to take part in vestibular research with the team of Dr. Owen Black, an otologist conducting neuro-otology research at the Legacy Health Systems.  To this day I am so very grateful for Lynn’s generosity, help and guidance.  Thank you Lynn.  (http://www.wobblers.com/index.html)

With a fire in my belly and a cause to fight for, I became an advocate, a spokesperson, a warrior who refused to stay quiet.  I became obsessed.  I wanted gentamicin banned and I wanted the powers that be to hear my story and the story of the thousands of others I knew were trying to cope.  I became a vigilante towards something that was defined and fueled by anger but also provided me with a coping mechanism and a way to release the anger and frustration that was consuming me.

I wrote to the FDA, I submitted an “adverse reaction” to a medication report; yes, you can do that!  How else can the FDA accurately manage the safety of drugs on the market?  If you have ever had a bad side effect because of a medication, please submit your own report by going here:  http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm

I met with people to share my concerns and ideas for bettering the system of educating people of dangerous side effects to medications.  I met with Sue Ann Thompson, founder of the Wisconsin Well Women’s Foundation (http://www.dhs.wisconsin.gov/womenshealth/wwwp/) and wife of Wisconsin’s former Governor and then U.S. Secretary of Health and Human Services, Tommy Thompson.  With Sue’s assistance, I was able to get a prepared packet of information about gentamicin, the numbers of people affected by its adverse side effects, ideas for change, and a discussion about why aren’t the side effects of medications reviewed with a patient or the patient’s family when administered in the hospital?  I still wonder why this doesn’t happen.  One is certainly provided a ton of information when prescription medications are picked up at a pharmacy, right?

I helped coordinate a gathering of Wisconsin Wobblers where we shared time together as well as attend a town hall meeting with then Congresswoman, now Senator, Tammy Baldwin.  http://www.baldwin.senate.gov/  We shared our stories and started a ball of information rolling.

Although these drives to effect change provided me with a sense of purpose each day, it was one solitary experience that changed me and flourished a picture of unforgiving darkness into a masterpiece of bountiful color.  It came out of nowhere and was delivered in what I believe by a divine hand.  As I faced each day I wrote, I wrote a lot.  Writing was a self-devised therapy and coping mechanism I incorporated.  Mostly as a way to release the noisy thoughts and fears that seemed to never leave me alone.  Then one day the writing fell to the page differently – different from my own pen.

I had begun another day sitting at my kitchen table ruminating over how I was going to get through this, what my future would be like, who could I call that day to alert of the dangers of gentamicin and how could I help others who were going through the same thing and stop it from happening again.  However, for some reason on this day I felt as low as I had since my induction into disability when without intention of writing, my hand reached for a pen and began placing words onto paper that placed into me a whole new direction.  It began with:  “I often think why did this happen to me?  Why have I been put in this condition?  What did I do to deserve this?  I’ve thought about it for a long time and you know what?  There are no real answers to these questions.  It is as it is and I must learn how to live with it.  I must accept it for if I don’t, I’ll miss out on the many still remaining beautiful things life my life has yet to offer”.

Thus began my fall into grace.

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Now what…

            Where did I go?  Did I go anywhere?  Where did my understanding go?  Where do I start to fill up the nothing?   What now?  Where were all these questions coming from but most frightening, how and where do I find the answers?  I’ve never felt what I felt back then; I didn’t even know those emotions existed.  Why was I thinking what I was thinking and was I really thinking at all?  I was so confused and so frightened…  I couldn’t stop the noise the world of disability was slamming me with. I was shocked.  I was really, really angry at the doctors for not telling me that this could happen to me while being treated with the gentamicin.  I was furious with myself for not taking action I now felt I should have.  I was terrified that I lost my job.  I lost my independence, my spontaneity, and my adventurous spirit.  I felt I had lost everything.

          There I was, home with nothing to get up for.  Thoughts consumed me. I knew what happened to me and how it happened based on what the doctors told me but I was never provided with  management tools or progressive ideas of what my future might hold.  I didn’t know how to control what this transition did to me and I had no idea how disabling it was going to prove to be.  I was in a world that was oddly invisible to me.  I couldn’t recognize anything anymore and nothing fit the way it used to.  It was all about starting all over, but from where?  My independence was squashed, and my comfort was pulled out from under my feet.  I wandered in and out of sadness, despair, and fear.  I felt as if I had died and I could not be buried.  My body and mind was trapped in a deafening yet silent noise and as each day uncovered unrealized and unwanted barriers, I was caught in the experience of what happened to me over and over again. But then one day something changed…

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So long work, hello label…

My supervisor Scott was very supportive of my attempt to work from the moment I came back and felt his hug in the hallway.  He was also watching me like a hawk.  There were days when co-workers would stop by to ask what they could do and of course, interact with day to day business operations.  There were several times when I was found in my make believe state, upset, in tears, angry, and at a loss for what I should do next.  I wasn’t able to keep up with the pace my position demanded and the ride share I had worked out wasn’t working out.  Cambria is a distance from the town my co-worker lived in, Beaver Dam.  It was a huge ask for her to pick me up at my home as it was about 15 miles out of her way each day, 30 miles round trip.  I was grateful for her generosity and compassion and I tried to help by sharing money for the extra gas she had to use,  However, it was far too much to expect her to continue to give me rides.  We did, however, work it out where I would drive to the Pick and Save grocery parking lot in Columbus, about a 15 mile drive from my home.  As she would pass this on her regular route, there she would meet me and we would ride together from there.  Thing was, I now woke to my days with an added and noisy unnerving task of getting into my car and driving.  The only remotely comforting thing about this drive was that 95% of it was on country roads so I could take my time, a real long time, but even still, it was terrifying and stressful beyond words.  By the time I arrived my destination and then to work, I was fully overloaded with noise and no room left to do much more than wish I was still “normal”…

Long story short, the time came when I felt a gentle hand on my shoulder, heard a kind and sincere voice, “Cheryl, I don’t think you are ready to come back to work”…  Scott knew I just could not keep up with my job but most importantly, Scott knew that working was not helping me heal.  I understood, I sobbed, and I regretfully moved on from the one job I found that would have taken me to a lot of success and a lovely retirement.

However, in my mind all I could think about was, I need money to survive!  How would I pay bills, my mortgage, buy groceries?  Unfortunately, I had not opted for the long term disability option in my work benefits.  Unemployment was an option, but really, what did that get someone those days, even these days.  My then partner did provide some assistance but the relationship between us was very stressed, it was prior to all this happening, now even more so.

So, in keeping with the fortitude I somehow continued to dig up to keep on going, I found a job very near my home, a short 4 mile ride.  But really, who was I trying to fool, other than myself, that working was not in the cards for me anymore.  With just one day to go to be eligible for benefits, I was fired.   Ouch, the slap of “disability gets in the way” fired…

I looked for other jobs and even in the unbalanced state I was in, I had a few offers.  However, it all came down to driving long distances, one was even an outside sales position.  Kudos’s to that employer wanting to take a chance like that with me!  See what making believe can do for getting a job!  At least I knew I had an impressive resume that could get me jobs but, it all came down the fact that I was physically, cognitively, and emotionally far too unstable to work.  Thinking back on this now, I’m sure I wouldn’t have lasted long in any employment.

All my attempts to make believe finally caught up with me and I slipped into a place of forced admission to disability permanency defeat.  I reluctantly yet necessarily applied for Social Security Disability Benefits.  It was here that I was branded with a label on which every attempt to coordinate my life depended on.   And… another chorus of noise joined the already screaming choir.

 

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The mirror doesn’t lie…

It took everything I had, physically, emotionally, and cognitively to go back to work.  The physical and cognitive fatigue of attempting to work full time, to get from one place to the other was overwhelming.  My body felt compressed and as if it was trying to move its way through neck high water.  Have you ever walked in a lake or swimming pool?  That’s how I felt all the time.

Cognitively, there wasn’t room left to be able to think, to do that amazing multitasking I could once do.  My thinking processes where overrun by having to keep my concentration on consistently trying unsuccessfully to connect myself to where I was in space.  Even just attempting to sit in a chair without falling out was thought consuming.  There was no room left in my brain to do anything else but try to compensate to this upside down, sideways, blurry world I was in.  But I tried.  I tried to do my job just like I always did, with zest, speed, organization, doing two to three things at a time.  It became apparent there was absolutely no way that was going to happen.  But I tried, I made believe, and I was consumed with the noise my body, mind and even spirit were making, a multitasking noise…

It was embarrassing being in the state I was.  I looked like an old woman, my face drawn down; my eyes always on the ground, my body tilted forward, my gait wide apart, using a cane.  My co-workers tried their best to understand and help me but really didn’t know what to do.  I could definitely feel that “how do you interact with a disabled person” vibe.  After all, I was completely different from the Cheryl that they knew prior to my introduction to disability.  They did their best to help me.  One particular situation stands out prominently in my memory; I was part of a sales representative meeting where we gathered at a local restaurant.  For some of the outside sales reps, this was the first time they had seen me since my transformation.  We were all sitting at a long table and I was seated at the end.  One of the extra added touches to vestibular dysfunction is an illusion of movement when no movement is occurring at all.  With that said, I was in mid-bite when a waitress walked by and I suddenly felt plucked off my chair and into outer space.  My arms flailed, my feet when up in the air, plate and fork went flying into my neighbor’s food and I crashed to the floor.  That moment seemed to stand completely still, everyone at my table, those around us, fell silent, there was that nothingness again – I was encapsulated in nothingness.  It was a “Matrix” moment – silent slow motion.  My co-workers rushed to help me up as I worked to hold in my tears.  I asked one of the ladies to help me to the restroom.  As I worked to clean the remnants of my meal off my clothes, I raised my head and for the first time in that mirror I saw a broken women staring back at me.  I looked at my co-worker and completely collapsed into the fiercest tears I have ever shed.  It was then that the total sense of loss hit me and it was then that I really understood that my life as I knew it had disappeared.   I could no longer make believe.

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