Bringing Reason to the Shrill

     I strive to bring reason to the shrill.  Health care mandate.  Health care reform.  Health insurance.  Auto insurance.
     First, the health care mandate.
     Why is mandating the purchase of health insurance different from vehicle insurance?
     No one is addressing this seeming parallel.  I am not a driver.  Am I missing something?  Tell me.  I want to understand.
     Health care reform.
     To decision makers, I ask a simple question:
     Do you believe that each of us is guaranteed that we will wake up tomorrow with the same capacities we had when we go to sleep tonight?  On what basis?  Do you believe in a God that shelters us from life's unavoidable realities?  How does that influence your decision making?
     Can you tell me what your medical needs will be tomorrow?  What will the cost of those needs be?  I do not know the precise sum of my needs.  Yet, life has given me a good idea.
     I pray we may celebrate the joys of our daily living.  I pray we may embrace the sorrows of our soul's breathing.  Simplistic though that may sound, that is how I define sanctity of life.

Driven to a Healthy Pondering

     The U.S. Supreme Court is hearing arguments regarding the 2010 Patient Protection and Affordable Care Act.  Some call it, "Obamacare."  I cannot--I will not--stoop to that level.
     I have simple questions.  Health insurance.  Auto insurance.
     Tell me.  Drivers must purchase automobile insurance in order to drive an automobile.  Is that correct?
     I am not a licensed automobile driver.  I want to ensure my facts are correct.  If my statements are not correct, I welcome being corrected.  The truth is more important than my ego.
     I have simple questions.  Auto insurance.  Health insurance.
     Much ado is being made regarding the personal mandate portion of the act--the requirement that everyone purchase health insurance.  I confess.  I have stopped listening.  My mental well-being is more important than my civic responsibility to be an informed voter.  Listening to every last argument regarding an issue is no longer my definition of what it means to be a good citizen.
     Tell me.  Is there a parallel to be drawn between the requirement to purchase auto insurance, and the personal mandate requirement that every individual purchase health insurance?
     Tell me.  Is the purpose of auto insurance to provide financial remuneration, and protection to automobile  drivers in the case of an accident?
     Tell me.  Why is no one raising these questions?
     Tell me.  Why is no one offering this parallel in defense of the personal mandate case?
     Tell me.  Why is hyperbole valued more than reason, logic, calm, and integrity?
     Tell me.  When will it be safe to listen without fear of hyperbole hijacking reason?
     Tell me.  Is there a parallel to be drawn between the requirement to purchase auto insurance, and the personal mandate to purchase health insurance?
     Tell me.  Do I understand the basic premise of auto insurance?
     Tell me.  Is there a parallel to be drawn between auto insurance and the personal mandate to buy health insurance?
     Tell me.  I am listening.  Tell me.

Epilepsy Chronicles: Precursory Shakiness

     Honestly, I don't know if what I am about to describe is germane to the Epilepsy Chronicles.  I think it is.      My thoughts, words, and descriptions deal with brain damage most directly, moreso than epilepsy per se.
     I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me.  These attributes may be seen as laudable, and, in one sense, they may be.  Yet, there is a neurological basis that makes these attributes essential.  I am not a doctor.   I have not studied neurology, or any scientific discipline that might offer me insight.
     I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams.  I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range.  Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed.  The opposite is true, too.  In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications.  Sometimes, an altogether different anticonvulsant is prescribed.
    Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others.  I recognize it myself.  All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically.  The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
    Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response.  Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult.  I know that a part of that quiet means removing any activities that I know will involve further neurological agitation.  I try to be rational, so as to explain that I can withstand some tension, frustration, and anger.  Yet, my rational efforts are useless.  My nervous system has been hijacked such that being physically steady is next to impossible.
     What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years.  My description today is fresh to my life--fresh to this moment.  After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred.  Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
     I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today.  I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?

The Epilepsy Chronicles: A Firm Grip on Me

   You have a hold on my right leg and arm no longer.  Yet, your grip on me is firm--firmer than I realize.  I try to erase you from my memory--put you in the well within me.  Yet, I look back to my words--to my writings.  You have a firm grip on my mind.  You take words from my my sentences.  You steal the precious part of me that I want to give.  You give me no clue as to where you are.  You give me no key to find you.  Where are you?  You are hiding from me.
     I try to understand.

The Mermaid Chronicles: The Right Way

Upward this mermaid's arm rises,
Right wrist bent, fingers tight-fisted.
In the pool, this mermaid moves.
With bent right wrist, her left-bent elbow lowers,
They break the water's calm.
Through the waterway,
Her forearm rows forward.
Upward her right arm ascends airborne.
Rightly, she aims upward.
Straight to the sky she stretches.
Seeking no splashing,
She strives a straight, uplifted stroke.
Yet, with right wrist bent, and elbow left bent,
All she may do is sway.
Downward her left leaning elbow lowers,
Below the water's top, she skims.
She stirs, and showers surrounding swimmers.
Yet, no mind the gulped water--the blinding showers.
Her firming forearms, beefing biceps, and circling shoulders,
Will triumph.

This Mermaid

An hour's time, this mermaid swims,

No laps counted, 

Just an hour's time.

On her back she turns,

With eyes gaze upward to the white-lit beams.

Arms are raised--airborne--with a student's hands.

Shoulders rotate,

Biceps are built, not with bulk,
But with the sinews of this swimmer's strokes.

Forearms forge,

As oars they row,  

Feet flutter--ankles in unison cycle--

Through the pristine pool's waters.

From one end to the other,

This mermaid endeavors.

No laps counted,

Just one hour's time,

This mermaid swims.

A Huge Difference Between Understanding and Acceptance

    "Your cerebral palsy accelerates your aging process.  Do you understand?"
....
     I was in a fog.  Sitting in an opulent hotel suite celebrating a family wedding, I was in a fog.  It never occurred to me that I could do anything but push my body as hard as I had been doing.
     Delusions of having some modicum of smarts were shattered.  The notion of there being alternatives to pushing my body beyond her limits destroyed.
     Long-term disability? SSDI?
     I knew the intellectual meaning of both.  Or so I thought.
     Long-term disability...LTD to some....
Long-term disability insurance would allow me to retain a significant percentage of my income should I become unable to work due to a disability.  Long-term disability insurance was offered for a pittance.  Quietly, I purchased the policy.  Saying little to many, it seemed remote, yet, more likely for me than others, that my disabilities might be amplified--they might deafen my cries to work.
     I could not conceive what it might be--how it might look--that I would be unable to work.  After all, I was stronger--I was more stubborn--than any obstacle my cerebral palsy and epilepsy might put before me.  Or so I thought.    I closed my eyes, and opted to buy the insurance.  It offered peace of mind.
     I thought I had looked at all of the angles of how my disabilities might affect my future.  I forgot.
     My capacity to look at all of the angles, literally, was obstructed.  I forgot.  I forget.
     My right eye wanders.  You could say, I don't focus on the fact that I have little to no peripheral vision out of my right eye. Never have I had it.  My world view has been left of center.
     SSDI?  Social Security Disability Income.
     SSDI was beyond me--completely beyond me.  I knew the words, "Social Security Disability Income." Yet, SSDI was something other people were on--something other people received.
     I was in a fog.
     "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."
     I was in a fog.  For the moment, I was sinking into a comfortable sofa, I was enveloped by loving family.
     I was numb.  My family stunned silent.  Together we sat, trying to absorb a future radically different from what we imagined--a future different for all of us as a family.
      "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."

Getting It Right

     For a lifetime, balance has been an issue for me.  I am not so different from everyone else.  Each of us struggles with finding balance.  Be it work, money, chemicals, emotions--whatever it may be, each of us has struggles with balance.  For me, physical imbalance is my struggle--what I strive to surmount.
    I am drawn to the picture of me in 1966 dressed as a ballerina.  The little girl dressed in a pink tutu and tights, and carrying a pink, purple, and fuschia parasol is concentrating to keep her balance.  Although the beam is unusually wide, she is maintaining her balance.  A proud grandmother looking on probably didn't hurt.  That little girl wanted to be--believed that she could be--a ballerina.
     At some point in the last ten years, I had to have her in front of me at work each day to remind me that balance was possible.  Work seemed hopelessly out of balance with no hope of reconciling the imbalance.  The ballerina tiptoed past my forlorn eyes to remind me that if I concentrated, and stayed on course, I would find my way to balance.
    Much has changed since 1966.  Much has changed since she sat on my desk as a sign of hope.  Not that her meaning to me has changed.  It has grown.  She twirls in front of my imagination, to remind me how far I have come.
    Today, my struggles regarding balance are quite different.  More basic than in much of my adult life.  Physical balance.  Two years ago, chemical imbalances co-opted with emotional balances to leave me physically unbalanced.  I doubted whether I would regain any of the strength, and balance I had had previously.
     Fast forward two years.  I knew what needed to be done to work back to physical balance, if it was meant for me to have in my life.  Four mornings a week, I return to an activity I did once a week, as a child.  As many went to church on Sunday morning, I went swimming.
    This morning, something very special happened.  To the casual observer, the woman with short, brown hair, who was wearing the blue striped swimsuit, turned to her right side from her left side while doing the side stroke.  BUT....far more happened in that moment.  For the first time in her life, the woman had the strength in her right arm and leg to propel her forward.  Never before had she been able to turn to her right side.  There was not enough physical strength present--not enough confidence in any physical strength present in her right arm and leg to try to turn to her right side.
     My turn to the right side was not turned on as a light switch.  Weeks of concentration....focusing on the strengthening my right arm, and leg.....These preceded this morning's special moment.  Yet, as faith-filled, and hope-filled as I am, I did not know whether I would be able to strengthen my arm and leg by sheer exercise, and persistence.
     I do not know what is next.  Only my body...and my hairdresser....know for sure.
     I do know that this morning, I was getting it right.

Employing Yourself

     Today, unemployment--finding work--touched me. Not me, Patty Thorsen, but, rather, someone I know was thrown by the bureaucracy of unemployment benefits--how they are administered.
     I feel somewhere on the continuum with Guilty at one end, Gratitude in the middle, and Insensitivity at the other end.  How can I possibly offer the support, and encouragement a friend deserves?
     My guilt? I am not faced with the challenge--the stress--of finding, and keeping a job.  The unemployment statistics.  Job creation.
     Gratitude?  My pace is mine to set.  I am free from the expectations of others--arbitrarily-established benchmarks of performance.  Swimming is mine to lap up.  I awaken to no alarms--my bladder takes care of that.
     Insensitive?  Yes.  I fear I am insensitive to the challenges--psychological challenges--of pursuing and applying for work that is below one's gifts--below one's potential.
     I hear the self-destruction that, in the long run, well may erode the faith, and hope necessary to make the most of one's gifts.  Self-destruction found in job hunting is masked by outrage at the system, outrage at the plight that individuals without any resources necessary to find a job.
     Never would I have imagined that I would forget the years of unfulfilling work, the frustration of being underestimated.  Yet, nearly two years have passed since I made an unexpected exit from the full-time work world--an exit after 24 years.  Occasionally I dream that I am trying to get back to work, yet, I never make it.  In the dream, I wonder, "What is wrong with this situation?"
     I know that finding a job is not easy.  I understand that seeking job opportunities that are beneath one's gifts, and potential is a painful compromise--a compromise of conscience.
     I do understand that persevering those trying times is paying off now.  A stable income...not excessive, but, stable, and secure.  Retirement.  Pension.
     I know that I wanted no part of what I am saying now, when I was working full-time.  For that reason, I question the integrity of my prayer.  Yet, my desire that friends, and family, who are in this situation, invest themselves fully in creating their new lives.
    My prayer for anyone who finds themselves underemployed?
    May you pour the anger, hostility, outrage, and frustration into an earthen vessel that you store out of your sight--separate from the human being, who must be employed.
    May you relinquish the burden of civic responsibility, and advocacy for others with fewer resources while you heal your wounded self.
    Civic responsibility, and advocacy will re-form itself within your spirit, when you emerge from the chapter of unemployment, or underemployment.  Have faith.
    May you define compromise.
    May you make necessary compromises.
    May you continue the pursuit of a more fulfilling life--a fulfillment of your potential.
    May you give no one the satisfaction of knowing that you are the person they may imagine--a person of lesser potential.
     You are better than that.  You are worthy of the challenge.  You can and will surmount the challenge.
     Employ your gifts.  Present them to the world with humility, grace, and determination.

Enthusiasm's Moderator

     High clouds wisp over a blue springtime sky.  65 degrees in St. Paul's May lure me outside--with Zoomer.  

     Dressed properly.  Pursed with a phone for emergencies.  Keyed for safety.

     All set???  

     Well....Not quite.

     Zoomer must be as charged as I for an adventure.  Last night's tiredness left Zoomer forgotten, with no recharging.

     Zoomer's battery state.  Empty.  

     Zoomer's Battery States???  Empty.  Partially Charged.  Battery Ready.

     You may know your car's Empty does not mean truly empty.  You may know you have ten miles to go until you will be with gas can in hand.  I do not Empty's distance.  You may no the equivalence of Half of a Tank in Gallons.  You may know the miles per gallon your car affords you.

     Yet, Zoomer is a heavyweight.  Without the umpphh from Joy the Joystick, Zoomer is dead weight.  Brainy the Blockhead is no help.  He may Elevate me to reach to higher places.  He may offer relief with his state of Recline.  He may lift and lower my Leg Rests.  Yet, Brainy the Blockhead is of NO help in charging Zoomer's Enthusiasm for our adventures.

      Zoomer's dead weight frustrates me--frustrates my enthusiasm.  Yet, my frustration--my impatience--has no pull with Zoomer.  I cannot push Zoomer into full power--fully charged energy--with my impatience.  My inflated sense of self does nothing to empower Zoomer's tired state.

     So, I must wait.  I must welcome Patience as a visitor into Enthusiasm's Sanctuary.

     What does Empty mean?  How many blocks?  How many hills?  How many curb cuts?  How many intersections?

      How do I measure Partially Charged?  Does that mean I will limp along painfully with a broken ankle's speed.

      I--my Enthusiasm--celebrates Battery Ready.

      I may be safe in the States of Empty, and Partially-Charged.  Yet, I cannot take that risk.  My health is more precious to me.  

     Yet, I will not submit to Empty, and Partially-Charged.  Battery Ready, and Enthusiasm shall prevail.  We shall prevail.  Zoomer, you will not fail me.  We shall prevail.  We must.  My health depends upon it.

Zoomer Chronicles: Thursday's Sidewalks

    How long have you lived in your current home?  What do you know of your neighborhood?

    Today, Zoomer and I went out to bask in the splendid Minnesota spring day.  My goals?  Get out and about during the precious clement weather days in Minnesota.  Gain experience in navigating in downtown St. Paul.  Goals achieved?  Yes.  But, today had nothing to do with checkmarks and everything to do with experiencing life around me this day.

     St. Paul, Minnesota is said by some to have been designed by a bunch of drunken Irishmen.  Born across the River--the Mississippi River--in a suburb of Minneapolis, Minnesota, I did the unthinkable--I moved to St. Paul.  What is the big deal, you ask?  Don't ever tell a native St. Paulite that navigating the streets is difficult.
    Their claim is as perplexing as the St. Paul Streets
     In Minneapolis, 300 Nicollet Mall is located on Third Street and Nicollet Mall.  Streets in Northeast Minneapolis follow U.S. Presidents.

    St. Paul.

    The numbering of streets is continuous.  

    The addressing of streets throughout St. Paul differs from Minneapolis.  500 Cedar Street is not located on 5th and Cedar streets as you might think.  No, 500 Cedar Street is located at the intersections of 11th and Cedar streets.
     Oftentimes, I have called myself navigationally challenged.  My condition did not begin when I moved to St. Paul to go to college in 1978.  Yet, it didn't help:)

     All that said, I feel comfortable in Downtown St. Paul.  I have lived here since 1983.  Yet, today, I discovered new places I never knew existed--a downtown park, several apartment buildings, among others.  I visited places that I had heard of, and had a general idea of--St. Mary's Catholic Church, and the First Baptist Church.
     I have not deviated from my appointed paths--to and from the bus stop, and to and from the store.  Zoomer has freed me of the calculation of paces, by which I measured my days.

     At one point, I was transported back to the sidewalks surrounding 3906 Vincent Avenue in Minneapolis--the home of my maternal grandparents, who lived near the 45th parallel.  3906 Vincent Avenue was filled with hours of fun--sidewalks.  To a kid, who lived in the sidewalk-less suburbs, my grandparents' home--3906 Vincent Avenue--was a tricycle rider's heaven.  Sidewalks.  My brother, sister, and I could go and ride to our heart's content down the tree-lined sidewalks.
     Today, the trees do not shade the sidewalks.  I have traded in my three wheels for four.  Much has changed since then to now.  Yet, from then til now, my goal?  To see how far I could go.  From then til now, my destination?  As far as my wheels will take me.  No departure times.  No ETAs.  Thus, no delays.
      Time to go out to play.

Suffering From...

My jaw throbbed.  Rubbing it with my hand seemed to have no good or bad effect:  the pain was deep and untouchable.  Because the pain was genuinely unanticipated, there was no residue of anxiety to alter my experience of it.  Anxiety and anticipation, I was to learn, are the essential ingredients in suffering from pain, as opposed to feeling pain pure and simple.
                              Autobiography of a Face, by Lucy Grealy,  p. 16
     Lucy Grealy describes the initial feelings she had shortly after seriously injuring her jaw in an accident.  Lucy told me why I have responded to "suffering from" out of the mouths of other people in reference to individuals with disabilities.
    Was I being fierce?  Was I being defiant?  Maybe.  Yet, that has never satisfied my response, living with cerebral palsy, and epilepsy.
     My response to my cerebral palsy has evolved.  By nature, cerebral palsy has been my intimate since birth.  My umbilical cord was wrapped around my neck five times at birth.  Oxygen was deprived from the left side of my brain, which controls the right side of my body.
     For the first forty years of my life, I presumed that I would have the same capacities I had had since birth.  I anticipated no changes in my capacities as I aged, much less that my capabilities would be diminished at an accelerated rate.  Yet, that accelerated diminishment is precisely what I am living.
    I would divide my response to my cerebral palsy into two time periods--1960-2000, and 2000 through the present time.  Up until I was 40 or 45, I resisted reference to anyone with a disability as suffering from their respective disability.  Lucy Grealy just explained to me why I responded as I did.
    Anxiety or anticipation regarding a condition which has always existed is not possible.  I resisted "suffering from," because I was not anxious about how to live my life with full use of my left hand only.
     Different from living with the conditions I have had from day one, recent years have called for different adaptations.   Suffering from was an amplification for pity in my early understanding.
     Within the past ten years, I have come to a different understanding.
     Suffering from is not a sentence to be served.
     Suffering from is a journey to be navigated. 

Government Services--Personal Energy Policy

     Having identified myself in prolific terms, it is important to examine the services, and regulations of government.  How does my profile affect my needs for, and views regarding government services, and regulations.
     I must confess that my views are rooted in deep fear.  I understand the need for debate regarding the organization of and support for Medicare that is imminent.  Knowledge of my own need for it next year leads me to put my head in the sand with cotton balls in my ears.  The forthcoming hyperbole makes me ill.
     I could be the audience to whom politicians will base their positions regarding Medicare.  I do not want to be a part of politicians' Medicare focus group.  I cannot deny my needs.  I will seek what I need, nothing more, and nothing less.  That is my contribution toward a picture of a balanced budget.  My contribution may not be financially balanced, but, it will be balanced in terms of medical necessity.  I purchase private insurance commensurate with my medical need, and financial affordability.
     With regard to Medicare--its future health--we need to take several actions independent of any legislative action.  We need to accept our own aging, and the corresponding needs we may have--needs that are quite likely, however unsavory they may be.
     I do not know how to arm myself further from the imminent hyperbole.  All I may do is to assert logic, reason, and insight, and pray that it resonates somewhere within decision-making bodies.
     I have strong views against military expenditures, as well as support for other government priorities--government investments.  Yet, in the past ten years, I have learned the essence of energy conservation.  No. Not nuclear power, oil, coal, solar power.  I speak of none.  My personal energy.  My life is ruled by a single policy personal energy conservation.  I must not take on advocacy for issues outside of my passion--issues outside of my understanding--issues beyond my individual needs.  I consider myself to be concerned about social justice issues.  Yet, I invest my personal energies in trusting other more effective--more passionate--advocates, who have the knowledge requisite for success.
    May we adopt the policy of personal energy conservation to lessen the rhetoric, increase civility, and improve the quality of decision-making with regard to such vital issues.  If we do not do so, we deserve the quality of decisions that are made, and the tenor that precedes it.  I, for one, do not think we can afford such lavish use of our precious resources.

Left With Fear

     I fear little.  Not because I am brave, or courageous, not be a long shot.  I fear little.
     Fear's expenditure lessens my deposits of strength to take on necessary human challenges.  My moment's challenges?  They are few.  Preserve my mind's vitality.  Nurture my spirit.  Treat my hand gently.  Preserve the gifts she gives me--the strength I have taken for granted--abused--for a lifetime.
     My vehicle's challenge?  There is but one.  Preserve the strength of my left hand.  Right-handed I am not.  Ambidextrous I am not.  My mind--my spirit--are conveyed through the strength of my left hand.  Friends, family, and a spiritual community revitalize my mind and spirit.  With them, my voice sharpens.
     Exercise might strengthen the hands of some.  Yet, my lifelong abuse of my left hand fertilizes this moment's fear.  Osteorthritis attacks with anxious fear.
     Writing is my voice.  I attend to my ankle--I accommodate her anxiety.  Yet, I fear threats to my left hand's grip--the strength she brings to me.  I must give her due gentleness, that she not be lost to me--to my mind, to my spirit.
     Am I alone in such piercing fear?  I don't think so.  Yet, I cannot say what for others is the unrealized piercing fear that awaits an honest revelation--a revelation that would bring a much more authentic life.  I don't know what my left hand's compromise is--or my compromise to my left hand's honor.  If I did know, I would challenge friends, family, and strangers to be open to their body's revelation--an invitation to authenticity.
     To sleep I go.  Healing--rejuvenation--I seek.

Grieving A Body

For years after I began to have symptoms of MS, I used language to avoid owning them:  "The left hand doesn't work anymore," I said.  "There's a blurred spot in the right eye."  In distancing myself from my ravaged central nervous system, I kept grief at bay, but I also banished any possibility of self-love.  Only gradually have I schooled myself to speak of "my" hands, "my" eyes, thereby taking responsibility for them, though loving them ordinarily remains beyond me.
                           Waist-High in the World, Nancy Mairs, p. 43
     I understand what Nancy Mairs is describing.  She did not claim to be a spokesperson for all disabled individuals.  Permit me to refer to Nancy Mairs by her first name.  She invites her readers to share intimate details of her life, in the hopes of nurturing understanding by other individuals.  I accept her invitation.  I hope you will accompany me.  Nancy provides a starting point from which to reflect on the "ravaged central nervous system."
     I began to notice symptoms of osteoarthritis ten years ago.  Osteorthritis and cerebral palsy joined forces to accelerate my aging process.  My approach for my cerebral-palsied right hand, and my unaffected left hand has been to personify their relationship to me, and with one another through writing.  When I began to notice that my right hand depended inordinately on my left hand, I conceived of a conversational eavesdropping between my affected body parts.  For a lifetime, I have been called to respond to questions regarding my disabilities.  Early on, it became clear that the more open I could be about my body--about my disabilities--the deeper my relationships with other people would be.  Eavesdropping is frowned upon socially, however, it seemed that writing--writing a dialogue between body parts--could be an effective vehicle to transport questions into answers and understanding.
    I am intrigued by Nancy's comments about grieving, "In distancing myself from my ravaged central nervous system, I kept grief at bay, but I also banished any possibility of self-love."  I think I have taken a different approach than she describes.  Neither one is better than the other.  When I was fitted for my first ankle-foot-orthotic, or leg brace, I knew that I would face a psychological adjustment.  I talked about my brace--about my fears--with my coworkers.  In so doing, I invited them in for two purposes.  Quite selfishly, I needed their help to adjust to the new appendage to my body.  But, I hoped that they could understand what they had within themselves--what their "braces" were--that joined us.
     "Ravaged central nervous system," is a marvelous description.  I am not thrilled by the fact that my right ankle is on her last leg.  I am not thrilled by the fact that I understand the meaning of "homebound."   I have joked that, as I have been trying to secure a wheelchair, I have forgotten what it is that I am trying to get out to do.  Yet, it is not a joke.  It is true.  It is pathetic.  I am driven to distance myself from the pathetic aspect of me--that pathetic aspect.

Body, Mind, and Spirit

     The juxtaposition of these three words is hardly novel.  Oftentimes, a prescription is offered to achieve balance among the three essences of who we are as human beings.
     I want to offer a different view.  Always,  I have thrived on challenge. But, I do not relish the challenge lunged at me from an aggressor's hands.  I do not savor harsh challenge inflicted in my heart by a marksman's sword.  No, there is a different challenge--a pristine challenge.  I revel in challenge to sharpen my wit. I revel in challenging others to sharpen their wit.
     Today's pristine challenges are marked by questions.  Should you be receptive, I invite you to attend to them.    
     Is body, mind, and balance something you value?  Do you respire enough to aspire to a body, mind, and spirit balance?
     Clearly, a balanced spirit is the offspring of a balance between body and mind.
      Is your body being fed by your mind?  Does your body need a change of your mind's pace?  Is your mind being fed by your body?  Can your body move enough to feed your mind?  Is your body being fed fresh air to stimulate new ideas?
     Do you value body, mind, and spirit balance?  Do you respire deeply enough to aspire to an inspiring life--a life through which your spirit may soar on eagle's wings?
     Just a thought.

A Temple? A Broken Body?

Or, do you not know that your body is a temple of the Holy Spirit who is in you, whom you have from God, and  that you are not your own?
                                             1 Corinthians 6:19
    I fail miserably as someone who can quote the Bible chapter and verse from cover to cover.  That is not my aspiration, at least not for the sole purpose of making such a claim.  Yet, I do listen each Sunday to the words spoken, and for the messages intended for my ears to hear.  Though the Catholic liturgy revisits the same readings in three-year cycles, I never meet the readings as the same person with the same ears.
    In recent days, two concepts central to being Christian are clashing--calling for some sort of reconciliation that I do not recognize sufficient to utter it.  I must confess, I may be taking the words too literally.  I hope not.  I pray I will be called on it, if I am.  I would rather understand than be right, if those are my choices.  But, I do not want to forgo the blessing of being enlightened because I was afraid of what literal translations call me to do, or how to act.
     What are the two clashing concepts?  Listen.  "...your body is a temple of the Holy Spirit who is in you, whom you have from God."  Now, the breaking of the Body of Christ, being broken--being willing to be vulnerable to each of one's life moments....that is our call.
     How do "your body is a temple," and "being broken" reconcile?  Am I taking temple and being broken too literally?  Am I trying to make apply to everyone else what I am confronting?  Probably.  Am I mistaken?  Maybe.  Is the question worth asking?  Is the reconciliation between your body is a temple and a broken body possible?  Is it worthy of seeking?

Quality of Life

     Being a self-advocate in order to secure a wheelchair for myself--to improve the quality of my life--has led me to reflect on what quality of life is.  I guess it is not possible to establish a checklist--a grocery list--from which you may go to readily identified places, or people to secure the quality of life you are seeking.  That is tempting.  But, it is FAR from realistic.  Yet, some degree of that process must done, with the understanding that a simple checklist will not suffice.
    So, quality of life.  Recent days have brought home to me the questions--the answers to which--have guided me during the past year and a half, since I went on long-term disability.
    Quality of life.  Independence.  Movement.  Help.  Dependence.  Interdependence.  Accommodation.  Partnership.   Ankle foot orthotic.  Bone spurs.  Diagnosis.  Treatment Options.  Surgery.  Cerebral Palsy.  Health Insurance.  Handicap Accessible Doors.  Door Closers.  Family.  Friends.  Community.
    These words have punctuated my quality of life during the past year and eight months.  I am  navigating these words--these questions.  But, I am FAR from arriving at what I want.  It is hard to arrive at a point that I cannot see.  I don't remember what I want.
   Ten years ago, I enrolled in a master's degree program.  Nearly five years ago, family and friends celebrated with me the graduation as a master of library and information science.  Pictures, and a gown remind me of that woman.  Yet, I don't remember her.
   Two years and eight months ago, my 28 years of working full time ended suddenly.  I am not mourning work that I enjoyed.  I didn't.  Yet, I mourn that my determination to make the quality of that work life did not render a more fulfilling career.  I do hold precious a document I compiled--responses to a "Thank You For Your Friendship" e-mail message that I sent to 23 individuals with whom I had worked during 24 years.  These were individuals who I wanted to know what had happened to me.  I wrote the e-mail message knowing that I needed to bring a closure to the ending of a long chapter in my life.  I would not describe any of the 28 individuals as "close" friends.  Yet, we respected one another.  One of the 28 women has since been shot to death, literally, by her husband.  "A harsh ending" does not begin to do justice to the gravity of such a sad injustice.
     I return to the words of those 27 women, as I seek guidance-direction--as I seek to navigate defining phrases--Quality of life.  Independence.  Movement.  Help.  Dependence.  Interdependence.  Accommodation.  Partnership.   Ankle foot orthotic.  Bone spurs.  Diagnosis.  Treatment Options.  Surgery.  Cerebral Palsy.  Health Insurance.  Handicap Accessible Doors.  Door Closers.  Family.  Friends.  Community.
    Some questions have thrown me, and challenged every expectation of the life I can live.  Interdependence does not ring true to me.  It is contrived.  I prefer Collaboration.
     The line between Defensiveness and Willingness to Confront Necessary Realities is precarious, at best.  I don't want to be TOO willing to confront necessary realities whose time  may come to me earlier than I like--earlier than they might come to others.  The time that other people must confront necessary realities cannot be a source of embitterment to me.  That is pointless--destructive--for everyone involved.
     I called into question my own position on the Defensiveness versus Willingness to Confront Necessary Realities Teeter Totter yesterday.  I asked for more than I need at this moment regarding physical accessibility--doors that are handicap accessible.  That is my immediate need as I await getting a wheelchair.  I do make accommodations, and receive help such that a laundry room door and the door to the recycling bins do not need to be made accessible.  Logic being my guide, it seemed wise to take action while I had my courage up.
     A cold slap in the face was my wake-up call.  "By the time people reach that point [needing to have adaptations to laundry room, and parking ramp doors,] they get personal care attendants."
   "I am not ready.  I am not there yet.  I don't want to have my privacy violated--compromised."
    Defensive?  Fierce?  Stubborn?  Unrealistically independent? Unrealistic in my expectations?  Close-minded?  Narrow-minded?
    I hope not.
     Quality of life.  Independence.  Movement.  Help.  Dependence.  Interdependence.  Accommodation.  Partnership.   Ankle foot orthotic.  Bone spurs.  Diagnosis.  Treatment Options.  Surgery.  Cerebral Palsy.  Health Insurance.  Handicap Accessible Doors.  Door Closers.  Family.  Friends.  Community.
     Some issues have been solved.  Others remain.
     Quality of Life.

Dependence's Reconciliation

     What will dependence demand of me to reconcile?
     I have never been good at reconciliation--my bank account--my physical needs.  Neither have been my strengths.  I had a strong inner sense of both balances.  My bank balance has been more stable than my physical balance.  I knew the limits of both--or so I thought--so, I did not waste my anxiety on balance--on those balances.  I lived within my means--or so I thought.
     Ray--I am too young to be called "Grandpa"--spoke treasured words to me in the last years of his life.  My grandmother having died, Ray lived with us.  Listening to this beloved storyteller share his life experiences, I knew the younger alterego of this shy man had quite a temper.  He had deeply ingrained stereotypes not softened by age.  So, his words are all the more treasured.  "When I die, don't feel sad.  I have made amends with everyone I had differences with.  Ray was no scholar.  But, Ray was brilliant in his understanding of reconciliation.  I try to live by Ray's words.  Yet, I do better in reconciling with others than I do in reconciling with my self--with my body.
      My physical balance is changing.  My stamina long gone, my physical balance demands my attention.  I am called to reconcile my life's accounting--my balance of independence at one end of the teeter totter and dependence at the other end.  I have tried to brace myself for the radical changes that lay ahead.  Literally, I brace myself from my foot to my calf--you could say that I am on the right side of bracing myself.  I am physically.  Time will tell whether I am on the right side of bracing myself fully for the future.
    Physical balance demands putting one foot in front of the other.  Physical balance demands deliberation of movement.  Balanced living demands of me now deliberation of mind.
    Yesterday's step toward balance was to answer the second of three questions. "What will dependence demand of me to reconcile?"  
    My question's posing was to an independent contractor, whose product and services I was seeking.  I accepted that he had the mechanical knowledge I needed.  I presumed that to be enough to meet our mutual needs.  Yet, I was surprised to be told that I did not need to do a certain task.  He  seemed to dismiss my need.  Would the electric wheelchair enable me to open doors, get through my bedroom door, most notably?  I know my weakness for defensiveness.  I tried to disrobe myself of any defensiveness.
     I am willing to hear that I may not be able to accomplish a given task--perform a given maneuver--with this machine--with this alien entering my life.  I may not like the answer I am given.  But, I must ask the question if I am to be able to accommodate my life to a changing body.  I must receive answers.
     I may not be able to be independent as I have known myself to be for 50 years.  Yet, if I am to proceed with any semblance of independence, even if I am not, I need to know.  If all independence is taken from me, I need to know so that I make other arrangements to live differently.  For now, all of my independence is not being taken from me.  Yet, I do need to have as much information as possible to allow me to do a different form of life planning than I ever imagined.  I did not have a full appreciation of the partnership--the co-conspiratorial relationship between cerebral palsy and aging.  I could put my head in the sand.  I could ignore--deny---the issues, considerations, and questions that my future may call me to address.  But, I cannot fixate myself--every day's breath--with anxiety regarding what is to come.  I am called to acknowledge what I may not like now, while I have such a deep sense of love and support from family, friends, a worshiping community surrounding me.
      What will dependence demand of me to reconcile? 

My Body's Betrayal

    My right ankle is my Achilles' heel.
    Ambushed by osteoarthritis, my right ankle refuses to allow an agile living--or so is the feat she tries to accomplish in me.  Today, I am being offered a deeper understanding of betrayal--physical betrayal.
     Physical betrayal?  Yes. Betrayal is not limited to human interaction.  Betrayal is alive and well in physical form.
    Physical betrayal has two layers: acute, and chronic.
    Acute physical betrayal is the sharp deviation of physical health from what is normal for a given individual.  For me, last year, acute physical betrayal was sharp pain caused by bone spurs in my right ankle.                                            
     Chronic physical betrayal is the ongoing deviation from what is considered to be normal physical health.  Once again, this year, my chronic physical betrayal is my Achilles' heel--my arthritic ankle.  It is not sharp, unabated pain.  It is stripped physical stamina, that is the physical betrayal with which I interact.
     Physical betrayal requires negotiation toward a new agreement--a negotiation from which emerges a new way of living.  Physical betrayal requires ongoing negotiation, not a one-time arbitration of grievances.  Such would be wonderful!  Such is not reality.
     For me, that has meant compromise, and accommodation.
     In recognition of my ankle's way of being, I am slower in my immediate speed of movement, and more deliberate in my pace of living.   Most importantly, I listen--with a keen ear, I listen.  I craft probing questions to ask--of my self, and of my ankle.
     Of my self, I ask, "What is most important to me that I do?  What gives me joy?  What am I willing to do to do what is most important?  What am I willing to do to make joy possible--not guaranteed, but, possible?"
     Of my ankle, I ask, "What must I do?  How much may I do? If I dare not to submit to your betrayal of me, how much may I do without compromise--without accommodation to you?"
     My accommodations to you?  First and foremost, I address you by name.  I know you are a part of me on which I stand--on which I live.  Second, I give you support.  For now, I give you a brace--an ankle foot orthotic.
      Beyond my willingness to compromise is my mental and spiritual health.  My mind--my mental well-being-and spiritual being-demands that I strive for more.
     I am not alone in needing to acknowledge physical betrayal.  I sure hope not.  I am the lucky devil for whom physical betrayal is more pronounced--easier to recognize.
    I thought that I understood the terrain of accommodation.  Last year, I learned that my ankle would not support my old way of living.  My ankle placed demands on me.  I engaged doctors in partnership toward diagnosis, and healing.
     Yet, with bone spurs debrided, my mind cries out for equal time.  I partner with orthotists, and insurance companies, and medical vendors to be given wheels to roll outside my ankle's limits on my feet.
     Easy though it may be to do, I cannot surrender to the question of, "What is it--what activity--that I am trying to trip over my ankle to do?"  I have come frighteningly close to doing so.
     I am not my life's guarantor.  I must resist being resistant, fierce, or defiant.  I must not be submissive.  I must not be a victim.  My body's betrayal will continue.  Her speed of acceleration is not mine to know.  I must be willful without being defiant.