Embrace the Shake?

            So, I’ve gotten a bit off track from sharing my story as I originally intended when I began writing this blog.  But then again, have I?  I may have “jumped the fence” to the present day but I believe that today is part of my story.  I promise I’ll get back to the place after “The Lull” to pick up where that left off.  But for now, my present day is offering me so many lessons and experiences, that I feel compelled to stick with sharing how this new place I’ve been wandering around in is helping me discover a new kind of silence amid a new kind of noise.

            At last report the number of seizures I’ve had since the last medication trial was six.  I’m up to 12 now.   In the past four days, four seizures.  The strongest was at the pharmacy counter in Target while picking up my new medication, Vimpat.  That one was a doozey…  I had a couple of stressful days which I’m sure helped bring it on.  The culprits of stress?  1) My external hard drive stopped working – the place where all my writing and photography is stored…  I fell prey to a very anxious worry I’ve lost a lot of work for this blog and the images I’ve captured.  Right now the drive is at the “Computer Hospital” being evaluated for a full data recovery.  Please, please, please let it be so….  2)  How am I going to pay for my new medication?  $630 for 60 pills – really?  Without prescription drug coverage, I was terrified at the thought of what I was going to do.  I give great praise to “Team Cheryl” at my neurology clinic for banding together to find a way to get me a supply of the medication with a free 2 week trial from the manufacturer.  This provides a great window into making sure I can tolerate it, so far so good.  Then Team Cheryl put their know how into action and expedited an application to help me obtain the medication directly from the manufacturer at no cost to me.  Whew….  Thank God.  3) Experiencing so many seizures!  Strangely, I’m kind of getting to understand them.  I know when one’s coming on and I know there’s nothing I can do about it.  I’ve learned to simply embrace them.   The most difficult part is on those who are around me when I have one.  It must be really scary for them. 

            So, speaking of embracing the seizures, I came upon an amazing TED talk given by Phil Hansen titled “Embrace the Shake”.  From YouTube comes the following description of his talk.  “In art school, Phil Hansen developed an unruly tremor in his hand that kept him from creating the pointillist drawings he loved. Hansen was devastated, floating without a sense of purpose. Until a neurologist made a simple suggestion: embrace this limitation … and transcend it.” 

            What I love about Phil’s presentation is how he shares his amazing embrace of his situation with very insightful and inspiring ways of describing how he found ways to take what ability he still has to a whole new level of creativity.  He discovered how he could use his remaining abilities to create a whole new way of sharing his passion for art with the world.  He discovered a “whole different approach to his art that completely changed his artistic horizon”.  He went from a singular way of creating his art to expanding into many ways of creating by finding that “embracing limitation can actually drive creativity”.   I found this fascinating and I learned something from Phil; that it’s not what one loses or is limited by that means anything at all.  It is what that limitation can do to drive one’s ability to create unlimited possibility.  It’s what embracing the shake can do for you.  Here’s Phil’s TED Talk, I hope you enjoy it, I think you will.

Posted in Acceptance, Beginnings, Disability, Disability and Opportunity, Disability Noise, Discovery, Identity, Independent Living, Inspiration, Lessons, Motivation, Non Fiction, paying attention, Perception, Resilience, Self Help, Spirit, Transition | Tagged , , , , , , , , , , , , , | Leave a comment

“I Will if You Will”…. Keeping with Present Day

Not long ago my friend Shelley Peterman-Schwarz called me.   Shelley called to check on how I was doing and I was anxious to learn how she was doing.  Turned out our hearts needed to talk with each other and we found ourselves sharing a very powerful conversation.

Shelley was in the midst of a self admitted pity party.  I think her call to me was her way inviting me to share and compare some of mutual pity party pointers in hopes we’d help each other find a way out of the party place.  Of which we both needed to do.  Shelley has MS, has had for several years.

Shelley shared with me her thoughts on marginalization; thoughts about sometimes feeling marginalized by friends, family, society, the environment, herself, and even the refrigerator. 

What is the definition of marginalized?   According to Merriam Webster it means:  To relegate to an unimportant or powerless position within a society or group.  Searching the net I also found this:  Marginalized:  past participant, past tense, to treat (a person, group, or concept) as insignificant or peripheral.

What marginalization might represent to a person living with chronic illness and disability is being caught in mega-marginalized noise of being overlooked, unseen, forgotten, frustrated, seen as incapable, ignored, unreachable, separated, deemed a mistaken identity.   Now that’s a rather powerful combination of noise, huh?

Shelley and I talked about that mistaken identity part, an identity others sometimes place over us that proves to only restrict them from seeing our true identity, the one they may have forgotten about.  That veil restricts others perceptual ability to see the original and sustained identity of who we have always been and continue to be; us.   We may be in a different “skin” but internally we are everything we have ever been.  We remain whole in our experiences, our joy, our love, our knowledge, expertise, passions, and all that we’ve ever done or felt in our lives.  All that and more is still; us

Shelley and I discussed how we think we see others as we always have; after all they’ve not changed, right?  (That could be questioned….)  Our changes haven’t impacted their identity to us, their space in society, in our environment, or in the refrigerator.  Or, have they?   Long pause here…..

Shelley and I talked about that what others seem to identify the most in persons with chronic illness and disability is what they can’t do.   That led us to understanding how that identity shades others view of what we can do.    You see, both Shelley and I have been blessed with an inside essence of an outlook embraced with the spirit of resilience.  A spirit that continues to be as boisterous as it was way back before we were introduced to our disabilities.  That ever remaining spirit isn’t there to remind us of what we lost or can’t do, but rather, it’s more like a constant catalyst of what remains with us and fuels what we can do with all that power.  We were experts in our resilience then, we are experts in it now.

Shelley and I wondered about what our role in marginalization might be.  Are we contributing to it?  Are we letting its noise overpower our voice to being able to say “hey – I’m right here you know, I can see you and I can hear you.” 

Even in spite of our boisterous resilient spirit and original self that we are confident lives on, are we playing a role in rounding up and placing our spirit and self in a position of complacency?   Are we playing a role in keeping our spirit and self bound by the noise of what has departed, held by grief and mourning its farewell, letting the noise try it’s best to abound and last our lifetime? 

The mourning, the grief, the farewell to departed ability.  That’s a lot of noise to get in the way of the original beautiful self.  That noise varies in volume too.  At first discovery it’s deafening, then the spirit of resilience reminds us of who we still are and rises to lessen the noise to a little lower level.  This goes on and on for as long as it takes and maybe as long as it is.  The noise of pain lessens little by tiny little over time, it really does.  I believe that’s how our boisterous spirit, our true self, our spirit of resilience and spirit of hope weaves a beautiful silky cloth of silence. 

But every now and then a sprinkle, splash or wave of either self or societal marginalization is thrown about and a noisy reminiscence of a long ago farewell becomes slowly audible.   It ruffles the silky silence and we lend ear to a replay of the noise, pausing again to mourn what once was.  Yet somehow still vivid and clear above the noise the silken silence swirls around us lifting us back into precious and astounding moments of which we are blessed to be in right now, in this moment.   That is our true silent self, our endeavor of resilience, our labor of hope.

Shelley shared a powerful story with me about a time when her and her husband hosted a dinner party at their home with friends.   The dinner party went marvelously with great conversation and a wonderful meal.  Seems like any other dinner party, right?   During the meal, during clean up, and all things enjoyed, everyone shared and savored a feast of a gathering that eventually led guests and hosts to the living area for continued conversation.  It was during all this activity and interaction that Shelley found herself completely overlooked in the important role she played in planning, cooking, inviting, coordinating, and being present throughout the friendly celebration.  As the meal was enjoyed compliments were shared with Shelley’s husband, as the table was admired and cleared, the focus of admiration was on her husband rather than Shelley.  As everyone celebrated the feast and raised compliments to the evening, it was as if Shelley was relegated as unimportant and powerless in her actual role and presence in her own home and of what that evening was about.  She shared with me she felt marginalized, certainly unintentionally, but none the less, she felt that way.   Was it because Shelley is seated in a scooter and not able to always be eye level with others that no one sees her?  Is it that people have forgotten that boisterous spirit of Shelley?   That I find hard to believe, Shelley has quite a spirit, for sure!   Or is it because her identity as an able bodied woman is fading from her friends memories, from their spirits, from their own identity? 

Does this happen in your life?  Have your memories of true identity before you faded?   Are you or someone you know a past participant or a past tense?  I hope not because the past is the only place for marginalization – to allow it to fade away, to make it disappear. 

As for right now – beside you, before you;  stands, sits, rolls, lays, shuffles, or walks, a very present participant, a very important, powerful person who has a right now story, a gift, and a significant place in their place in this world, their world, and your world, our world.   Sharing it together is where moments of astonishment occur over and over and over again.  It’s powerful; it’s resilient, important and it is significant to us all.  As my friend Shelley shared with me, “I will, if you will.”

Thank you Shelley.  I will.

Me and You hand in handImage from Google Images

Posted in Acceptance, Beginnings, Disability, Disability Noise, Discovery, Gentamicin, Identity, Inspiration, Lessons, Living with a Label, marginalization, Motivation, Non Fiction, Ototoxicity, paying attention, Perception, resilence, Resilience, Self Help, Spirit, Transition, Understanding Disability, What's noise? | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

Still in the Present Day: Going up, Coming Down, Somewhere in Between

           Things started out pretty good and seemed to be moving up and along well.  Then – I started feeling lethargic, weak, and could barely move from one place to another.  Then the rash appeared.  Yep, another allergic reaction to the next in line seizure drug of choice, Keppra.  Another Sunday visit to urgent care.   Another waiting game for the rash to disappear.  Another in-between of where to go from here.   Where is exactly is it that I should go?  For one, the doctor on Friday, more prednisone, more waiting.  More adjusting, more patience, more, more, more. 

            You know, I pride myself in always seeing the bright side of things, staying present, letting my optimistic light shine and shine and shine.  Well, you know what; I just, once again, want to be pissed.  I will not resist this moment, I must have this conversation.  I have to have it because if I don’t the noise of ignoring it will cripple me and turn out my light.  I won’t have that.  No way.  I’m afraid of the dark.

            I don’t understand what the point to all this is, I don’t like it, and believe it or not, I kind of hate everything right now.  Can you believe that?

            I keep feeling my body going up, then coming down, and then floundering in the land of waiting for the space where I can start to move along on the next course ready willing and able, and stabilized.  I want to be on that course right now.   But instead, here I am “Sittin’ on the Dock of the Bay”, back to charting a new course.  At least I get to draw the map.

            Since the time between stopping the first med, Tegretol and now, I’ve experienced around six seizure events.  One was in a public place during a meeting where, thankfully, I was with several of my favorite colleagues who comforted me in amazing ways.   A few occurred while with friends, a couple while alone.

            Oh, and the one I had while talking to the mammography technician as we prepared to begin my yearly exam.   All I can say is thank goodness I wasn’t caught in the machine…. Yikes…

But the one that impacted me the most was the one that happened while with my Granddaughter, Elena.  She came to visit me while her Mom traveled to Illinois take her brother Noah to visit with his father and family.  When Lanie arrived we settled in, played, chatted, giggled, hung out, and seizing the right moment that appeared, I shared with her that Grandma is experiencing a thing called seizures.  I told her what seizures were, how they can happen and why, and what I would look like if I had one.  Prior to this conversation I struggled with how to explain it to her in terms she would understand, after all she’s six.  Suddenly a scene from the movie Rango, with  the character “Beans” popped into my head.   Lanie and I have watched this movie countless times… It’s really quite funny.  In the scene Beans suddenly stops talking and freezes in a wide eyed stare, as if someone pushed a pause button on her.  I told Lanie that’s kind of how Grandma would look if I were to have a seizure.

Beans from RangoImage from Google Images

I let Lanie know that even though it might look like something bad is happening to Grandma that actually, it’s something that will go away within a a minute or two.  I wanted her to know that I would be okay but if she felt afraid she could call Mommy or Daddy but she did not need to call 911 (she would because she’s that smart).  I also let her know that she could talk to me because I would hear her, just not be able to respond. We shared more conversation about it, Lanie asked questions, and I answered the best I could.

Lanie was in the living room singing and I was in the kitchen working on putting together lunch when I felt an uneasy feeling rise up that I get prior to having my pause button pushed.  I sat down and entered into my own “Beans” scene.  Lanie was beside me and I could her say “Gramma…. Gramma….”  When I re-engaged I asked her if she was scared and she said “no but, Gramma, that was weird”… and then life in the day of child went on without a single remnant of past thought.  What an amazing child she is…  I have a feeling there’s a lesson for me in this… taught by my beautiful six year old Granddaughter Elena.    

Really happyElena

Posted in Add another disability ingredient, Beginnings, Complex partial seizure, Disability Noise, Inspiration, Lessons, Motivation, Non Fiction, Self Help | Tagged , , , , , , , , , , , , , , , , , , | 2 Comments

Let’s Stick With Right Now, Shall We?

             I find it strangely appropriate that my blog “The Lull” showed up when it did.  It fits where I am right now rather uniquely.  How about that…

            So, I’m going to continue a lull from the past and stick with what’s happening right now.  I feel I need to do that for a number of reasons.  For one, I really need to just process what’s happening right now and I just feel the need to explore.  I hope you don’t mind.

            The “I’m Curious” blog posted a few days back struck a more vibrant cord in me than I initially thought was playing out.  It’s much more than curiosity that’s got my goat, it’s so much more.  I feel a monumental change occurring.  A directional change, one that I have a feeling is opening something I am destined to be amazed by.

            But then again, I’m really quite upset with what’s happening.  I’m kind of wandering around in the forest of “why”.  I thought I had that stuff figured out!  I do, or I did, or I thought I did?  I think (the dreaded thinking process/noise) what’s happening right now is rather mystical in that the noise I’m wandering around in seems to be setting a course to some pretty cool discoveries.

            Yesterday, I shared a very personal, philosophical, and thoughtful conversation with my friend Constance Tenhawks.  I shed tears and shared my fears, but each time I shared that realm, I found I was empowered by optimism sprinkled with insight that just showed up.  The conversation with Constance continued today in both word and present thought.  I say present because that’s what seems to have enormously blossomed in me.  Here I am in the midst of dealing with yet another health related trauma that has impacted me quite deeply.  However, I’m finding myself in this ridiculously prominent place of resilience that I am rather baffled about.  I mean come on, life just added another tier on the WTF cake?  Really, shouldn’t I be beside myself with anger, sorrow, fear, sadness, loss, blah, blah, blah?  I certainly have elements of those noisy things and am feeling the emotions of them all, but what’s presenting most prominently is the present moment; moments that are guiding me, educating me, comforting me.  How is that happening?  Do I have the right to question that?  Doesn’t that attribute to the noise?  What’s happening now seems more like I’ve found a place in the noise to be a point of guidance – the noise is there, however, the situation feels silenced with present moments filled with understanding and gratitude.   How is that happening?  Do I need to know; after all wouldn’t that just create more noise?

            Today I shared with Constance the following: 

            “What we have experienced accumulates into our expertise.  Can we use what we lose?  When I lost my balance, in more ways than physically, I one day realized I did not lose who I am; deep inside I remain the Cheryl that nothing nor no one can take away.  That Cheryl has been with me since before my birth, the authentic Cheryl, the one I love, cherish, and adore.  Nothing can take that away and nothing can change the experiences of my life.  For me, it’s taking the experiences that Cheryl has become passionate about, driven, understanding of, and really, really good at and allowing them to shine as a part of me at all times.  That is the silence we can grow upon, embrace, and paint into our heart and soul.” 

            And what I understand now; can draw into my life, my moments.  Wow… 

Blissful Beauty

Posted in Acceptance, Disability, Disability Noise, Discovery, Inspiration, Lessons, Motivation, Non Fiction, paying attention, Perception, Self Help, Transition, Understanding Disability, What's noise?, Who controls disability? | Tagged , , , , , , , , , , , , , , , , , | 2 Comments

I’m Curious… A Step Back into Right Now, Today.

            About trauma.  Are there levels of trauma that set a foundation and draw up blueprint designs consisting of levels of reactions and experiences for other traumas to set their footings upon?   I’m curious if the original and first trauma decides how a reaction to another will unfold?  Is that first initial trauma experience the one on which all subsequent traumas depend?   Or, do they take on a personality of their own?  Is a trauma reaction the same every time or does an “experienced” trauma survivor develop specific mechanisms within it’s very self that the old experience is able to teach the new experience the ropes?   Kind of like the connection I made when I heard my friend Michele Rosenthal on her radio show “Change you Choose” mention a “Big T”(Trauma) and “little t”(trauma).  I’m curious, is the Big T like a Big Sister or Brother to the little t? 

            But what about those feelings, those initial, oh crap, here we go again feelings:  Those feelings when a diagnosis is discussed, feelings about what course of action to take, and feeling the changes it opens in your life.  I’m curious if those feelings are not lessons Big T experiences provide because, to me, it feels the same and all too familiar.  As is the noise.

            Having just recently been diagnosed with complex partial seizures developed secondary to my brain surgery experience almost three years ago, I’m curious about all this and more.  My curiosity peaked yesterday when I called my son to drive me to urgent care because of a severe reaction I was having to a newly introduced seizure medication.  Lesson one, or Big T – oh yea, that antibiotic gentamicin experience….  I’m curious how that old experience shaped this new one.  Let’s see;  fear, anxiety, racing thoughts, am I going to die, is this how’s it’s going to be now, great, more needles, shots, pokes and prods; stop that medication, start a new one… now what, and, why.

            I’m curious, how courage finds its way to us, how strength and resilience shows up just in the nick of time, how gratitude shapes optimism, and how it is that I seem to be able to just keep swimming.  Is it that I know a shore line is right beside me or that on my other side there is a vast ocean of yet to be discovered possibilities? 

            I’m curious, about that “why” question.  I’ve asked it every time, and again yesterday with the obvious reason why being; I was taking a medication of which I developed a significant allergic reaction.  Next why:  I was taking that medication because I have complex partial seizures which need to be controlled and that medication is one of many that can help with that.  Next why:  I am having seizures.  Next why:  I had brain surgery which increased the risk of developing seizures.  Next why:  I had brain surgery because I had a dangerous, nearly exploded aneurysm on my brain.  Next why:  Why?  Oh Oh, stuck here for answers…. Hmmmm…  I’m curious what, if anything I’ll find wandering around in this neck of the why woods….  Oh yea… there are no answers or path through the woods that get to a why.  It is what it is, move along back to the place which I am at this very moment and as I gaze upon my other side towards the vast ocean of endless possibility, I ask myself; why not. 

            I’m curious, what comes next….


100_2097          100_2137

Posted in Acceptance, Beginnings, Complex partial seizure, Disability, Discovery, Gentamicin, Inspiration, Lessons, Motivation, Non Fiction, paying attention, Perception, Self Help, Transition | Tagged , , , , , , , , , , , , , | Leave a comment

The Lull

           Because of the “coming down” reaction I experienced and that we were now testing the device in a standing position, changes to the research protocol were required.  That meant a lull in using the TDU…  It took a long time for the protocol to be revised and then re-approved by the University’s IRB, the Institutional Review Board.  That meant I did not have the opportunity to use the TDU for several months.  That sucked.

            However, I continued with my studies at Madison College.  I learned a lot about accommodations, about ways to get around the campus, and ways to make it through classes, homework, and exams.  Because of this I was able to do very well on assignments and exams. 

But the one thing that I couldn’t make a difference in was my presence mixed among other students.  I couldn’t carry a backpack, it put too much strain on my ability to walk and I certainly didn’t need that.  Besides, trying to carry a backpack made me lean forward even further in an attempt to adjust to the weight of it, making me stick out even more, like a sore thumb.  I had to come up with something.  Luckily, I found a luggage carrier on wheels and found that my backpack fit it perfectly!  With a little trial and error I made a makeshift rolling backpack which I attached to the luggage carrier with bungee cords.  Now I didn’t need to worry about the weight of it.  A perfect solution that worked wonderfully!   So, with a cane in my right hand, the luggage carrier/backpack roll-about following behind me in my left, I set out to make my way through an ocean of students.  Whew… still not an easy task. 

People were everywhere, moving in and out of their own plans and unknowingly moving in and out of my challenges.  Walking through halls was the most difficult.   Oddly enough, I found the quicker I walked, the easier it was for me to get from point A to point B and once I started on my way, there’s no quick stopping.   Because of that, I needed at least 5-10 feet to come to a full wobbling stop!  If I needed to stop quickly I had to put my cane in front of me and stand there wobbling almost in a circle until I could re-orientate myself to my actual position.  This took a lot of practice and often I reached out and grabbed another student to help stabilize myself.  Imagine the look on their face!  Like we learned in driving classes, never pull out in front of a semi trailer, they can’t stop, and neither could I.

In spite of the fact I felt like I was constantly falling, I just kept moving.  My sight was filled with a sea of bouncing and blurring people mixed in with walls, floors, posters, and doors all swirling about in a circus of confusion.  I felt the stares, I heard the whispers.  But my own whispers held my conviction to make this work.

I recall one very hurtful experience.  I was in the library studying and time arrived to work my way to my next class, Intro to Psychology.  Being early, the halls were clear of students who were still in class.  That was always a relief…  As I made my way down the hall I saw a line of bouncy, blurring students sitting in a row against the wall at the very end of the hall.  I stopped to get a better look, just to be sure that’s what I actually saw, and continued on my way.  As I approached closer I could tell they were all looking at me, watching me wobble and stagger my way towards them.  I suddenly felt a spotlight of stares.  Keeping my head down to orient myself to the ground, then stopping, raising it to be sure I was still on the right path, the spotlight and stares continued.  I got closer and closer and at one of my orientation stops I saw the student who was closest to me tap the one next to him, point at me, and like a set of dominoes, the tap and point when down the row past each of the students sitting there.  When finished, they were all staring at me, watching me wobble my way past them.  The feelings this rose up in me were those of being ashamed, self-conscious, frightened, a freak…  I rounded the corner from where they were sitting and something else struck me; anger.  I left my backpack and with my cane walked back to where they were sitting and said; “Do you have any idea how your reaction to me makes me feel?  Do you have any idea what it’s like to put myself out here like this to make my life better?  Do you realize that I am here to do same as you?  I want you to know that what I just experienced through your actions will forever haunt me, I hope this does you.”

I retraced my steps around the corner, grabbed my backpack and within 20 feet was at my classroom.  I went in, sat down, and sobbed. 

Eye with TearImage from Google Images

Posted in Accommodations in college, Biomedical Research, Clinical Research, Disability, Disability Noise, Gentamicin, Going to college with a disability, Inspiration, Institutional Review Board, Motivation, Oscillopsia, Ototoxicity, Self Help, Sensory Substitution, Tongue Display Unit, Transition | Tagged , , , , , , , , , , , , , | Leave a comment

Now, Back to the Story…. That First “Coming Down”

           After my first extended TDU residual effect, Paul, Mitch, Yuri and I set out to investigate why I experienced the feeling of a 100-fold worsening of my vestibular dysfunction symptoms.  We couldn’t move on until all safety considerations were investigated.  This took a long time…

            We knew that, 1) a 20 minute session on the TDU extended the residual to an hour or more, but still didn’t know how it did this; and 2) that first “coming down” induced a significant physical and psychological reaction.  It induced a remembrance and comparison of what my life was before. 

           That comparison to the life before I got sick, to the reality of my life after, brought with it a huge increase, or perhaps awareness, of how badly the symptoms affected me, everywhere. 

For over an hour I experienced a return to and embracement of my original silent self that only existed in my longing for its silence to return.  With that visit cut short, the noisy place grabbed me back with a fury unlike anything I’ve ever experienced before.  No wonder I was scared!  I certainly didn’t want my symptoms to become worse, it was already as bad as I thought it could get!  

Think of it this way; you’re in a room where everyone is smoking, cigarettes, cigars, anything that can be lit up.  You’re choking from the smoke, you’re eyes are watering, you can’t breathe, and your only wish is to get out.  Then, hidden in the smoky haze, you find a door; you open it and discover a beautiful clear day, blue sky as far as the eye can see.  There is a gentle breeze swirling around you bringing with it the scents of sweet blooms, fresh cut grass, freshly baked bread, and a promise of a new day.  You explode with joy as you dance your way through the beauty of being set free from the choking haze that was holding you captive.  You find your way to a sunlit stream of water flowing over well worn stones of days gone by.  You put your feet into the stream and feel its cool and refreshing touch.  Birds sing, and leaves rustle in the breeze; you feel free and connected to a place of genuine goodness.

Then – someone opens the same door you found, from it smoke billows fiercely.  They grab you and say, “hey, you don’t belong here – get your butt back in the place you came from, no goodness for you”…

Choke, gasp, cry, fear, why, why, why…  That’s how it felt that first “coming down”…

          Scary Guy!

Posted in Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Independent Living, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Vestibular System | Tagged , , , , , , , , , , , , , | Leave a comment

Still Jettisoned to Right now but…. Okay, Pity Party Over

            This week I added a pity party post.  Felt good, really, really good.  The noise needed to come out.  So there, I have spent time with it and now it’s time to move on towards my goal with what I will now consider an additional certification in disability expertise.  Dang, I should have a PhD by now don’t you think? 

I listened to the noise, I screamed at it, I cried with it.  Then through the sound of silence I’ve come to know and love, I put this noise in its proper space of experience.  I’m sure it’ll pop up every now and then, of course it will, but on my terms. 

            Let’s get on with it then, shall we?  Where did I leave off when so rudely interrupted… oh yes, the “I think we did something really bad”… strange how that showed up at the same time as…  

            It’s fascinating how it took years for me to leave the noisy pity party when I first lost my balance and it took less than a week to say so long to the host of this one.  Is it that I’m getting used to the noise of disability interrupting or is that I have conquered the volume knob?  Hmm…  Either way, I just know that energy lost caught up in the noise is energy lost catching up with life.  I like that I can change the volume and tune in silence. I like that I have a silenced perception of disability…

Dave Steffen Band Riley Tavern 678

            I have a goal in mind, I have something to say, I have a story to share, and my hope is that I make a difference.  Hanging out with losers at a pity party only serves as lost time.  The time is now to dry the tears, sweep away the anger, and disconnect the pissed button.

All in a Row

Posted in Acceptance, Disability Noise, Discovery, Inspiration, Motivation, Non Fiction, Ototoxicity, Perception, Pity Party Over, Self Help, Transition, Who controls disability? | Tagged , , , , , , , , , , | Leave a comment

This Just In… A Jettison to Right Now…

Really?  Another Addition to my DisABILITY Resume???

Edna Taylor Conservatory 205

Pretty much all I could say this past Monday was, WTF… 

           This past Monday, July 8, 2013, I learned the results of an EEG I had the week prior to investigate why I have been experiencing some very strange and scary episodes of visual distortions, confusion, disorientation, loss of memory, strange smells when nothing was there and even hearing music when none was playing.  Little did I know, the smells and music were precursors to the other things and to, what I now know, are me having complex partial seizures.   Super, WTF.

            Come to find out, brain surgery increases the risk of developing seizures.  Nice, thanks for that extra added residual.  Perhaps I could have some cheese with that?  If one is to develop seizures it can start years later.  It’ll be three years for me in September.  Thanks’ my lovely aneurysm. 

            My neurologist, an amazing doctor by the way, Dr. Frederick Edelman, spent nearly an hour and a half with me going over the results, showing me the actual EEG and explaining the areas that indicated seizure activity.  He patiently answered all my questions, and then shared a long time talking about what medication I should begin.  This was a really hard choice as they all have side effects that can be quite distressing and downright horrible.  One of them is irritability.  I looked at Dr. Edleman and said, “Listen, I will not take anything that’ll mess with my attitude”. 

           I asked, do I really need to take meds?   Turns out I guess so, primarily because I now apparently pose a risk to myself and others driving and the little seizures could lead to the big convulsive ones.  Special…

           On to the next choice… turns out all the options have an irritability clause but the one I choose, carbamazepine or tegretol, seems to present the least risk, yet still on the yikes scale, and it’s the least expense being a drug available generic.  Still, I have to be aware of side effects and will need blood monitoring, but considering my choices, what’s a seizure to do.  That’s my attitude speaking…  I really do hope I don’t develop the rash…

            Back to WTF…  Really?  Do I really have to deal with this extra added introduction of disability?  I think I’ve developed enough of those acquaintances….  Come on Big Guy Upstairs – don’t you think I’ve had enough disability shoved down my throat, at my brain, at me?  Dang…   WTF.

           At first I just sat in my car after the diagnosis and choosing my anti-consultant meds (eww…), in shock, then tears, then I went directly to the pissed button.  Skip all those other “phases of acceptance”, I just wanted to be pissed.  I wanted to scream, yell, and beat something up.  I wanted to make believe what just happened didn’t and I wanted it to just go away, I wanted a do over.  Fat chance there Cheryl…  it’s here and it ‘s here to stay.  Well, ain’t you the lucky one.  WTF.

            I texted my pal Beth – “you home?”.  “Yep” she replied.  So, trying desperately to keep tears at bay, and then buck up by distracting myself with imagined strength, I made my way to Beth’s house.  “I got a bad feeling about this Cheryl, you had your appointment today…”  I looked at Beth and lost complete control.  We stood there, Beth holding me as tight as she could while I just lost it.  Crying, screaming, asking why, I just lost it.  Then I got really, really mad.  Again.  I went right to the pissed button.  WTF.

            Beth spent over an hour with me rambling with my pissed button fully engaged.  Why is it that this is happening to me again?  Why, why, why, why and, WTF.  Talk about noise!

Beth’s analogy – “You’re right in the middle of a shit storm Cheryl” and this too will pass.  No pun intended.  Gotta love my pal Beth, she always makes me laugh.

Guess it’s on to getting to know my newly introduced friend.  I hope she likes chocolate…. and silence…

Cottage Grove Road Antiques-Beading at Beths 003

Posted in Acceptance, Add another disability ingredient, Complex partial seizure, Disability, Disability Noise, Discovery, Inspiration, Motivation, Non Fiction, Self Help, Transition | Tagged , , , , , , , , , | 6 Comments

“Hello Mitch? This is Cheryl… I think we did something bad…. “

          Our previous experiments with the residual effect had been resulting in a limited amount of relief at a time, a few minutes or more.   The findings from the first 20 minute trial resulted in the first of extended residual times – over an hour and boy oh boy, did I ever take advantage of that hour

          Although a video of the first ever 20 minute trial was not filmed, there is this one taken after I had experienced four prior 20 minute sessions on the TDU.  This video is from my fifth session.  In this video, shot by former Hollywood producer and writer, Bill Angelos, (more on Bill will be shared in my blog soon), you will see and hear Paul, Paul’s daughter Andrea, Mitch and glimpses of Jordan Davis, former Vice President of Business Affairs at ABC, NBC, and Warner Brothers, whom Bill invited to see the results of the TDU and possibly provide some funding.  I also do a shout out to Wobblers about how exciting this discovery is.  This video clearly illustrates the amazing differences the TDU ignited from which the beginning of silencing my disability began; I just didn’t know that yet…



But then…..

After that first amazing 20 minute experience, I drove home feeling lifted beyond disability and into endless possibility.  But then, accompanying the first extended residual time was the first vanishing of the longer lasting relief.   The decline began gradually with the feeling of heaviness as if the weight of the world, and its atmosphere were pushing me down.  My body began to slowly droop, to stoop and to crumble back to its unbalanced position.  Colors dulled as my vision became overcast with the return of bouncing and blurring sight.  My cognitive abilities wavered in and out, mostly out.  I felt what it must feel like to be a puddle, just flat on the ground, mirroring an outside world unattainable of its reflections. 

It was heartbreaking and terrifying as I rose the next morning to a feeling of extreme exhaustion and what felt like a hundredfold increase of my vestibular dysfunction.  With what I can only describe as sheer guts, I worked my way through it and readied myself for the drive to MATC to attend classes.  The drive was horrendous and, again, how I made it I’ll never know.  Why I attempted it in the first place is probably the better question… 

Once at the college I found myself in such a state of heightened dysfunction that I had to call Mitch.  I was really, really frightened.  I had been coping with my disability for the past 5 years, a lot of time to have gone by to compensate in even the tiniest manner.   That day after experiencing the triumph of that first 20 minute trial, to me, was my introduction to disability all over again.  Everything I thought I had gained seemed to disappear and all that I accomplished in confidence, drive, and inspiration deflated to a state of incredible fear that the research somehow had gone terribly, terribly wrong. 

With Mitch on the phone, me crying in terrified confusion, we talked through what I was experiencing.  What we determined and discovered was that it wasn’t that my disability had suddenly become worse; it was that for more than an hour I experienced freedom from disability’s grip and reunited with “normalcy”.  For that amount of time, I no longer had the noise of my disability screaming at me and taking up the space I wanted to be free in.  Then, when the residual wore off, once again, the noise took over and my freedom disappeared.  It was like being released from prison for a crime I did not commit, then having the prison grab me back and return me to a life sentence for something I did not do, and throwing away the key.  I had experienced a new comparison of two different worlds.  In many ways I had forgotten what the first “normal” world was like because the noisy one that captured my attention had rudely taken over everything about me.  I just wanted that first world to return, I wanted that beautiful silence to come back and last and last, and last – forever….  Little did I know, that a world of sustained beautiful silence was just several 20 minute sessions away…

Rolands Grad Party-Cherokee 235

Posted in Aminoglycosides, Beginnings, Biomedical Research, Clinical Research, Disability, Disability Noise, Discovery, Gentamicin, Inspiration, Motivation, Non Fiction, Oscillopsia, Ototoxicity, paying attention, Perception, Rehabilitation, Research, Self Help, Sensory Substitution, Tongue Display Unit, Transition, Vestibular System | Tagged , , , , , , , , , , , , , , , , , , , | Leave a comment