Crossed Wires...Jangled Nerves...

Crossed wires….jangled nerves….

When you were born,

your umbilical cord was wrapped around your neck five times.

Crossed wires….jangled nerves….

The corded gifts that keep on giving—epilepsy…cerebral palsy.

Crossed wires….jangled nerves….

You have excess electrical activity in your brain--epilepsy.

Crossed wires….jangled nerves….

Epilepsy is like a thunderstorm in the brain.

Crossed wires….jangled nerves.

I can do it myself, Mom, don’t you know, I can do it myself….

Can’t you see, Mom, I can’t do it myself, I need your help.

Crossed wires….jangled nerves….

The faster I walk, the more I trip.

Crossed wires….jangled nerves.

Your cerebral palsy accelerates your aging process.

Crossed wires….jangled nerves.

The harder you intend to use your left hand, the more it will shake—intentional tremors.

Crossed wires….jangled nerves….

The more hostile I am, the more intense my tremors.

Crossed wires….jangled nerves...

The more data you throw at me, the slower I compute.

Crossed wires...jangled nerves...

The more instructions I hear, the more I must write them--

the more Velcro from my ear to my brain I need.

Crossed wires….jangled nerves….

The more instructions I hear, the more I must write--

the more Velcro from my ear to my brain I need.

Crossed wires….jangled nerves….

The less I write, the less I remember.

Crossed wires….jangled nerves….

The more I write, the deeper I think.

Crossed wires….jangled nerves….

The more challenges I am given, the more I want to surmount them.

Crossed wires….jangled nerves….

Epilepsy Chronicles: In the Throes...

     I fear the worst.  My body is out of control.
     Relieve me of my consciousness.  At this moment, relieve me of my consciousness.  Help me.  God, help me. Help me to hang on.
     My right arm and leg are falling off my body.
     God, help me. ... Mom, help me.  I need you.  Mom, help me.
     Home alone, I cry as though Mom can hear me from the next room.
     Mom, help me.  I need you.
     "You will learn to live independently," she said.  "You will learn to live independently."
      My roommate is gone.  I need you.  How dare you leave me in my time of need!  How dare you leave me in my time of need.
     I am alone.  Someone has been here, always someone has been here--within earshot of my cries.  However embarrassed, or shame filled I have been that I have not taken my medicatiion, someone has been within earshot. 
     I am alone.
     Maybe if I turn on my right side, my arm and leg will stop shaking.  Maybe, they won't fall off my body.  What else can I do?
     Relieve me of my consciousness.  Let me sleep.  My head is throbbing.  Let me sleep off my throbbing headache.  My head is throbbing.   
     Finally, without my knowing, sleep is given to me.  My consciousness relieved.

Epilepsy Chronicles: How Long Did It Last?

"How long did the seizure last?"

     You know I live alone!  Let's see...I should be able to figure that out.  After all, I wasn't doing anything.  Oh, that's right, I forgot.  I know that I am lucky, because I usually get an aura--a feeling like you get when coming inside on a sunny day.  So, I knew to look at the clock before the seizure started.  Once the seizure stopped, I looked at the clock again.  Based on that the seizure lasted....Get real...my attention was hardly directed toward how long the seizure lasted.

    I do know it is important information to him.  I know that my neurologist can diagnose a seizure, in part, by its duration.

    How do I tell you that there is more to my seizure than its length?  How can I convey to you--you know--I live alone.  I am capable of doing so.  Yet, I am a bit preoccupied during a seizure.  But, how on earth do I tell YOU that.  You are a skilled neurologist, but, your people skills leave a lot to be desired.

     In the future, I will do everything I can to check the clock before and after the seizure.  After all, I don't want to disappoint you.

     There has to be another way to determine how long a seizure lasts.  After all, not everyone with seizures can live with someone or be with someone every moment of a day and night.  It just isn't practical!  

     What are people thinking?  Or ARE people thinking?  And people say that I am not very responsive.

The doctors tell me that my thought process is messed up after a seizure.  But, what about their thought processes? What excuses do they have for  being messed up in their thought processes.

    "How long did the seizure last?"

     Do you have any idea of how ridiculous your question sounds?  Have you ever had a seizure before?  Are you aware of the time warp I experience during a seizure?  ...Seconds last for minutes....minutes seem like hours...

    "How long did the seizure last?"

A Human Inventory

    Long before computers automated the inventory process of goods, a relative inventoried the goods of several grocery stores.  Many years hence, a more sophisticated world has demanded a more advanced inventorying.  Valuations are conducted by many professionals, who begin where the automated inventorying leaves off.  Valuations established a working value by which business, or the lives of divorced individuals may move forward to more profitable--more fulfilling--lives.
    I have known two professionals who engaged in inventorying and valuations.  I find myself in the midst of a different--very humbling--sort of valuation.  I am being called to itemize how I live my daily life.
    How do I live my life?  Can I 1. perform this activity independently; 2. Can I perform this activity with the use of equipment or adaptive devices; or is it true that  I cannot perform this activity.   
   Dress;  voluntary bladder and bowel control or ability to maintain a reasonable level of personal hygiene; toilet; feed yourself with food that has been prepared and made available to you; bathe (tub, shower, sponge); transfer from bed to chair.
   I feel comfortable with each today.  Yet, it is daunting to see those very real prospects as a part of my future is akin to the decision to get a power wheelchair--to opt to receive a head rim that I could use at the time in my future when my left hand might no longer be capable of manipulating a joystick.
     That is humbling, to say the least.
    You will go to college.  You will learn to live independently.
   I answer the questions with those words in my lifelong memory.  I have achieved the first.  I continue to achieve the second.  The future?
    I know how I have lived my life until now.  I have seen deterioration of my body in the last ten years, especially in the last two years.  But, the future.  Seeing its truth presented before me in black and white--starkly--that is humbling.
    So, how do I live in the present, such that I make the fullest use of my own abilities currently?  How do I live in the present, such that I do not endanger myself--my physical capacities--for the future?  How do I live in the present such that I position myself--prepare myself--for the future, with all of its humbling prospects?
    Responding to the current valuation, I thought that my visceral response to it was the section regarding activities of daily living--ADLs.  I am not partial to any acronym--clinical jargon--that abbreviates individual human beings.  To some, activities of daily living--ADLs--is a foreign word--an unknown quantity.  To others, it is a clinic scheme used to organize the occupational therapy needs of an individual.  Yet, to me activities of daily living--ADLs--represents a test that I can still pass independently, or with some equipment, or adaptive devices.
  These are humbling questions.
  Will there be a day when I cannot perform this activity--any of the activities of daily living? 
   Dress; voluntary bladder or bowel control or ability to maintain a reasonable level of personal hygiene; toilet; feed yourself with food that has been prepared and made available to you; bathe (bath, shower, or sponge); transfer from bed to chair.  These are tasks in a list--elements at the heart of dignity.

Zoomer Chronicles: Rules of the Road

     Zoomer has asked that I share with you some basic rules of the road.  Zoomer has been very impressed with how cooperative everyone has been.  So, these rules of the road are short, and sweet.
     Pedestrians.
     First, do not block the curb cut, when you are stepping off the sidewalk onto the street.  Second, do not block the curb cut, when you are stepping on the sidewalk from the street.  Third, do not leave Zoomer lingering in the street behind you, because you are dilly dallying in the street.
     Drivers.
     Zoomer would love you if you did not park in front of curb cuts.  Zoomer won't report you to the park police should you choose to park elsewhere, and engage in other activities:)
     Automatic door openers.
     Zoomer means no offense if she declines offers of help.  She doesn't want to injure you.  If you are feeling offended, please look at the cuts and abrasions she has incurred, when she was trying to be gracious to you.  She is appreciative of your offers of help.  Righteous indignation messes with Zoomer's nervous system, so, she does not get riled up about anything.
    Elevators.
    Sometimes, Zoomer may need to refuse your invitation to join you in the elevator.  Sometimes, the elevator is too small for her to maneuver within the elevator.  She enjoys riding with you, when it is possible.

Zoomer Chronicles: Global Maps and Positions

     Cartographic scale is deceptive.  Small scale maps minimize potential explorations, yet to be undertaken.  Large scale maps provide perspective necessary to orientation--spatial orientation.
     Zoomer empowers my exploration.  Yet, her power is conditional.  She is not compatible with other powers--any other systems.  Any desire to position myself systematically--globally--beyond the view of Zoomer's position--must be disengaged.
     The medium of old--paper--must guide my explorations.  Yet, all the paper does not determine my explorations.  With faith I begin, while logic and reason I suspend.  Were logic and reason to reign me in, I might never have discovered the Vento Regional Trail...the Ramsey County Medical Examiner...the Alexander Ramsey House...the Science Museum exterior exhibits...the Robert Street Bridge...the Wabasha Street Bridge...Lowertown....
     Logic and reason have not been trashed.  Come snowfall, they will reign me in.  Yet, between now and then, I must take leaps of faith crossing curb cuts, will strong strides crossing streets, and jinx not my adventures with confining precision.
     Zoomer, teach me your ways that we may weather the storms, be steady in snow.  Zoomer, I pray, may we learn how to travel from November to May in fresh air, confined to no inner sanctum.

Zoomer Chronicles: A Privilege

     Only two weeks have passed since my wheelchair was delivered, and I started to learn how to use it.  FDX-MCG is not an intuitive, or catchy name.  So, for now I will call my chair Zoomer.
     Mind you, I have NEVER driven any vehicle in my 51 years.  OK, OK, I have driven countless people crazy without even trying:)  That is second nature to me:)  But, this,  this whole driving business  is brand new to me.  Intellectually, I knew that there would be a learning curve, but, I couldn't imagine what that learning curve would be.
    Today I set out intent on going to the grocery store.  That is familiar territory.  Then, I thought I would board my Zoomer, and head down to the Y to go swimming.  Those are simple tasks that require no thought to do in your life, right?  Well...
     People ARE very willing to help.  I was very apprehensive that people would be standoffish and condescending.  I do try to warn people that I am just learning, so they do not endanger their lives while they are helping me.  I have not experienced any standoffishness, or condescension.
     This learning experience makes me wonder how long it takes to learn how to drive.  I have enormous respect for how well so many people I know drive.  I have not appreciated it fully until now.  As deep as my appreciation is, I will never forget riding with my uncle during the wintertime in Minnesota.  My uncle did not turn around a curve wide enough.  The result?  We took part of a snow bank with us.  No one was hurt.  My uncle was not at all ruffled by what he had done:)  But, most people I know, and have ridden with are excellent drivers.
     Driving is a privilege.  It is allowing me to get out to live a fuller life than I have lived recently.  How fast do we ZOOM to get to our destination?  Do we appreciate its privilege?  Do we see what we pass along our journey?  May we see the sights along the way.  May we mark those places along the way to return to, in order to live more fully--breathe more deeply.  May we take home with us--make resident in our beings--the people, sights, and experiences on our journey.

Tables Turned

     Today, I finished another chapter in setting the wheels in motion toward a different life--getting beyond my home on my own power with the use of an electric wheelchair.  Hopefully, with doctor appointments, the requisite paperwork documenting my need, the wheelchair will be forthcoming soon.  I am not sure how to define "soon."  Days?  I doubt.  Several weeks? More likely.
     Tables turned?  Why?
     I am coming to terms with the tables turned.  For a lifetime, without much thought that there was an option, I strove to achieve Mom's mantra, "You will learn to live independently."  Anyone who dared to challenge that mantra was subject to my fierce defensiveness--a side to me whose strength I underestimated.
     Fast forward to July 2009.  A new lifetime--a new life orientation--began by necessity.  Rather than pounding on my chest with pride, "Look Mom, I am living independently," I was called to testify to my need for dependency.  It was an odd, uncomfortable--humbling--position in which to find myself.  Yet, that was where I was called to live--to be.

Moving forward....Almost.

     I never imagined what is exciting me right now.  I believe I am within several weeks of getting my wheelchair--a red wheelchair.  This week, I have felt the sense that everyone wants to see me getting what I never imagined might be best for me--the woman at the insurance company, my physiatrist, primarily.  I do not mean, by any stretch of the imagination, to slight the tremendous of family and friends.  It took me a year to come to terms with the notion that a wheelchair was my vehicle to living fully.  I knew I needed to come to terms with the idea--be emotionally comfortable with the idea--before I could engage in the advocacy necessary to go through the doctor appointments, the physical mobility assessments, and the stress associated with how well I could use the wheelchair.
   It is quite odd, at the moment my level of anticipation outweighs the prospect of losing use of my left hand.  That is MUCH more significant than you might appreciate, unless you know me.  All of my life I have had no fine motor skills in my right hand.  I use my left hand to a FAR greater degree than other people, who have full use of both hands.  That is not worthy of trumpeting on a daily basis.  In simple terms, I have never known any other way of living with regard to my hands.  Today, I said yes to the option to getting something that I may use if I come to the point of not having the requisite use of my left hand.  The full implications of not having the use of my left hand that I have today is not something that I can fixate my attention at this moment.
    My excitement may be more aptly described as satisfaction with myself.  In late December, when I met with my doctor to have the requisite mobility assessment for a motor scooter/wheelchair, I wanted nothing to do with either.  I begrudgingly opted for a scooter.  That was all that my emotions could handle.  In fact, when I tried to use several scooters, I was shown a wheelchair to try using.  I accepted the invitation to try it in the store.  Something seemed different, but, I didn't know what it was.  I stood up, and the man at the medical supply store said that I had been using an electric wheelchair.
   "What?"
     It couldn't be.  It just couldn't be.  I was too young.  Only old people--people who were slumped over-- used wheelchairs.  People in wheelchairs had speech impairments.  They could not be understood.  Their thinking was impaired.
     I am too young.  I don't have any speech impairments.  The doctors may have had serious doubts as to whether I would ever talk.  But, I proved them wrong.  And my thinking is not delayed--it is not impaired.  OK, my thinking is not exactly clear immediately following a seizure.  But, my seizures are rare.  I made my way through college.  I was not a star student by a long shot.  But, I did return, and was graduated with a master's degree.  And they said I would fall flat on my face--not in so many words, but through actions of doubt.
    "You did well with the wheelchair."
    "What?  That can't be."
     I left the store bewildered.  My insurance case manager called me.
    "Patty, think long term.  Think beyond what your immediate needs are.  Think what you will need in five years."
      "I don't want to.  That is too much.  That is too daunting for me.  What are YOU going to need in five years?"
     Dreaming that I was in a combination scooter/wheelchair, as I was crashing into the activity room of an assisted care facility unable to find the brakes did not help one bit.  I was completely out of control.  The nightmare of crashing into people was so vivid.  I was out of control--completely out of control.
     So, what was the turning point?  There were two.   First was time.  Second, the experience of being able to turn around 360 degrees in the elevator, while sitting in the wheelchair.  Not having to back out of an elevator.  I am sure there will be some of that.  Right now, I cannot focus on that.
     This has been a long road.  One and three-quarter years of not working, having diminishing stamina, and an arthritic ankle have taken their toll.  My mind needs what a wheelchair will offer.  To feel the support, and affirmation of my doctor, my case manager, and the medical supply company president was....no....is empowering.

What Will Independence Include?

     What will independence include?
     This has been a lifelong question that I have rushed in to answer before anyone else dared to define it--to deny its possibility.  Age has called me to question my irrefutable, infallible lifetime's answers.  Defiance was my youth's inseparable companion.  Age severed friendship.  The strain was too costly.
     My child took on faith my mother's inheritance to me.  You will live independently.
     Though neither of us knew the details, we accepted on faith that her commandment could be--would be--followed.  Her inheritance to me was that commandment.  Her inheritance to me was defiance--a commitment to defiance.  She defied doctors' doubts of my life's capabilities.  She defied educators' questions of my mentality.  She defied all doubters of my life's potential.  She would hear nothing of doubts, or questions.
    She committed herself beyond defiance.  She committed herself to action.  Unsupported defiance was hollow.  It still is.
    To doctors, she used knowledge of her two older children to call on her advocate's spirit.  She demanded diagnosis, when no need for such diagnosis was recognized.
     To educators, she committed herself to identify needed services. To counselors, she refused doubts.  She committed her time, her energy--her determination--for her commandment's adherence. She committed her strength to fortify her mantras.
     To me, she instilled the mantra. You will go to college.  I responded.  Passion about world events.  Pursuit of an undergraduate degree.  Graduation resulting from my pursuits.  Not a star student by a grade's measure of my mind.  But, graduation nonetheless. An inquisitive mind was nurtured.  In defiance of all expectations--mine included--I pursued graduate-level education.  I was granted graduation as a master.
     Not a boasting.  No.  Defiance.  Faithfulness.
     Mom, I bet you never thought I would take you so seriously.
     Family pride.  Friends' celebration.
     You will learn to live independently.
     I had no idea of its details.  Yet, I adhered.  On faith, I adhered to this commandment.  I adhered to this commandment.  For 24 years, I adhered.
    Then....then....a life's body of work died at the hands of a desperate body--a ravaged body demanding healing.  Mom and I are called to question her commandment--her mantra.  It worked for a lifetime.  Not without its serious imperfections.  But, it worked, nonetheless.
    Now what?
    What will independence include?

Dignity's Pecularities

    Dignity.
    The image that comes to mind is a woman dressed in an elegant black blouse, a fuschia fabric belt, and a floral floor-length skirt.  Her gray hair is adorned with a matching long black scarf that was wound through her fine strands.  Her cheeks are patted with pink powder.  That is the surface of Mrs. Dignity.  Dignity's prescribed behavior matches her elegant gown.  A diamond ring on her ring finger makes clear, she has invested herself in a lifetime with a well-respected, hard-working man, who has provided her a comfortable life. They had the requisite three children.  Her children married.  They provided her with grandchildren for her doting.  She survived the normal ups and downs of any marriage.  Clearly, he had died, but, she did not die with him.  She rekindled an old friendship--her gentleman friend.  She has survived with a quiet air of confidence.  Her emotions are spent on her children--her grandchildren.  But, as to the challenges--the disappointments, the opportunities--life in her time did not afford, she said nothing.
    That is dignity's face in my stereotype's vision.
    I feel far from dignity's face.  Yet, something pulls at me--some vague, amoebic form that escapes my grasp, much less my firm hold.  What pulls at me is a stranger I have not met, or do not recognize, if I have met her.  What pulls at me is not for bravado's ego to claim.  At least, I don't think so.  Selfish? I may be pulled more for my self to claim.  I hope it is somewhere on the teeter totter between bravado and selfishness.  That is beyond me to know at this moment.
    Still ambulatory, I wheeled into an hourlong test drive--to test the power a chair will provide into a future whose physical boundaries I may know in this life's moment.  Perceptive rather than sensate on Myers Briggs scale, I exceed what is natural.  I write a checklist of my 730-foot condominium.  Where do I need to travel--where will I need to travel if I lose my ambulation---lose more than distance's stamina, which has been taken from me. I succeed in my inventory--my checklist for my hourlong evaluation.  I have itemized my travel needs, my task needs, and my needs for recreational pursuits in my home.  Unknown to my conscious self, I have created a three-part questionnaire for the evaluation.  First, what may I do with the power chair, now?  Second, what will I be capable of doing given practice.  Third, what will I need to ask others to do because it is beyond my capacity to do?
    I enter the evaluation with quiet confidence.  My checklist is in place.  It is in writing for my reliance.  My questionnaire is ready for the answering.  I am ready for the answers.  Or, so I think.  After all, this checklist--these answers--are at the heart of wheeling forward in my life with some semblance of interdependence.
     The checklist--the questionnaire--is at the heart of defining three terms in my future's essence.
     What will independence include?
     What will dependence demand of me to reconcile?
     How will the equation of interdependence be formulated?
     Some ask of any life's dilemmas, "What would Jesus do?"
     A different voice--a different face comes to mind.  She is in no competition with Jesus.  No.  A different voice--a different face--presents herself to me now.
    Six months before death, she sat.  Ravaged by breast cancer--by a radical mastectomy--long before medicine's advances, she sat in her manual wheelchair.  From the dining room table to the living room, her 14-year-old--her youngest--granddaughter wheeled her.  A loving, albeit overprotective life history together, she said, "I bet you never thought you would see your grandmother like this."  Though never voiced then, "No, I never did."  Now, lo these many years later, the answer of my own question's asking still is, "No, I never did."

Independence's Confession--Surrender

   As time moves forward toward getting an electric wheelchair--a zapoid, as my sister calls it--I am softening.  The fierce, defensive woman of days gone by, is leaving.  That is good.  Her ferocity--her defensiveness--drained me of the energy necessary to shift gears into my new life.
   I confess, I do wonder what happened to two people.  What happened to the Cub Scout, who is sitting in the background behind my ballerina alterego?  I do not remember if I ever knew him.  Probably not.
   I must confess that for a lifetime, I have tried to tiptoe, ever so quickly, past the reach of him, and others in wheelchairs.  May I be forgiven my fear masked in an advocate's bravado.  Ever the advocate that others not shun individuals who appear different, I was guilty of the very crime I abhorred.
   I knew better.
   Given the graceful acceptance of Jean--a coworker, who was beaten to death by her husband--I tried to run from her scooter.  Forever etched in my memory is the day we were headed to a lower floor.  I opted to take the stairs rather than have to accommodate her scooter--a reality I could not face.  Jean was wise.  She knew my discomfort.  Yet, she never let on.  We both knew.  Yet, she did not need my comfort--the acceptance I could not give her.  Before she died, she offered her friendship should I ever need help accommodating to my body, after I stopped working.
    I wonder what happened to a childhood friend--the daughter of my high school vice-principal.  Jeannie and I went to Michael Dowling School for Crippled Children--I think.  It may have been Courage Center's predecessor, the Curative Workshop.   Jeannie had osteogenesis imperfecta.  Her brittle bones meant she had to use a wheelchair.  She had full use of both hands.  We were educated together.  We were not crippled.  We were not cured of our live's circumstances.  None of us is.
   Jeannie and I were partners.  I was the doorkeeper.  She was the handywoman.
   I cannot say that I have surrendered completely to my independence.  Were I to blame my resistance to complete surrender, I might blame my mother:)  A lifelong family joke has been that whatever goes wrong is Mom's fault.  Only to the degree that I have heeded my mother's words so long ago, "You will learn to live independently," may I blame my mom.  Seriously, I never have.  In good conscience, I never could.  It is her words that ground me.
   I have known an individual, who has worked outside the home in the past.  Yet, now she allows partial blindness to be an excuse for not living as fully as she might--for holding her family hostage to her dependence.  It is beyond me that she can live that way.  It is beyond me that her family does not use their faith to call her on it--to nurture a fuller life for everyone.
    Surrender to independence is a tenuous balance to strike.  Each of us needs to live in partnership with one another.  We are called to make the most of our gifts--live the fullest of our days.  We must live in partnership.
    We must give what we can, and take what we must.
    Surrender to independence calls for a heartfelt confession.  Mechanical offerings have no place in a true surrender to absolute independence.  I do not claim to have made the surrender to independence that I am called to make.  I do see the surface of the confession.  Words are given to me pry open the mystery of how to make a surrender to independence without losing one's God-given dignity.
    Tempting--alluring--though it be to think, surrender is not a one-time confession to be made at a convenient time of our scheduling.  True surrender--true confession--is a call made at inconvenient, humbling moments in our day.  When our dignity is compromised, true surrender is God's ransom.
    Flailing one's arms and legs as a confession is mechanical.  Flailing strips surrender of its dignity.  Self-respect deserves dignity.  True confession is a commitment--an openness to adjusting ways of living forever.
    Independence and dependence are not absolutes.  Independence and dependence are not opponents.  Absolute independence is not humanly possible to achieve.  Absolute dependence may be possible.  Honestly, I do not know.  Yet, absolute dependence is morally, and ethically unconscionable.
     I confess, I do not understand how an individual--how a family--may not strive to achieve some degree of independence--to achieve the fullness of God's gifts.  Difficulty---the degree of difficulty--that is involved in making a true confession--from crafting a unique interdependence--is no excuse.
     Independence is not a commodity that may be bought off the rack in a store.  Independence must be custom made--custom crafted--by calling on God for partnership.
     Dependence is not the scrap material of independence.  Dependence is interwoven into the fabric of independence.  Together, they create our life's tapestry.
    May we surrender to interdependence--a partnership with God.