A Shared Ride into the Unknown.

This week, I saw
An intimate--not of my body,
An intimate of my life.

Ravaged.  Robbed.  Quaking.  Troubled.  Resigned.  Disturbed.
Ravaged steadiness.
Stolen dignity.
Quaking confidence.
Trembling, troubled--disturbed--future.
Resigned.

Our causes differ.  Our training--our preparation--from God differs.
Yet, we share an aimless search for the moving targets.
Parkinson's Disease....Osteoarthritis...
They differ in landscape.

Yet, they share--we share--
A roller coaster ride.
Not a steady demise from the sure footing of youth,
No, we share
An unknown ride on a track with hidden, unscheduled twists and turns.

We share a ride
Toward an unknown destination,
At an unknown arrival time.

A Keen Ear. An Accommodating Spirit.

     Little scares me.
     Fearless I am not.  Fear I do.
     Osteoarthritis.  Puffy fingers. Inflamed tissues.
     Some have knobby knees.  I have knobby knuckles.
     I fear not the appearance.  Such is vanity--pure vanity.
     I fear the knobby knuckles--its killing paralysis.
     I fear loss.  I fear loss of my voice--loss of my voice through my left hand.  I fear not the loss of my right hand--the loss of my right hand as the instrument of my voice.  My right hand has never had such muscle power.
     My osteoarthritis affects my left hand, my left hip, and my right ankle.  God only knows as to its selectivity within my body.
     I do not ask--I have never asked--"Why me?"  I abhor that question.  What possible answer could serve anyone or any good end.
     Rather, I ask, "What lesson am I to be learning." 
     I take this as no punishment for any action I have taken.  Some, extreme in their thinking, take that tack.  I never have.  I never will.
     Rather, I ask, "What preparation am I being called to make?"
     A lifetime ago my answer to a call seems.  Just one year ago, I was counselled to look ahead,
     "Think of your needs beyond the next year--beyond the next five years.  I advise you to get a power wheelchair with a joystick on your left armrest.  I advise you to get a head rim.  At the point when you need it, a head rim will control the movement of your chair when  you cannot."
     I do not torture myself--I cannot--with the prospect of using the head rim.  Yet, I know that I have learned that lesson--made that preparation.
     Osteoarthritis.  My left hip?  A simple four-legged cane.  Common sense born of experience--carry no heavy packages, such as groceries, any distance.  A fairly easy solution.  For vanity, two canes.  One is multiple shades of dark blue.  The other is colored in shades of brown.  It looks like wood.  One must be color-coordinated, of course.  Living alone, one must be prepared.  Though not needed today, I need to have the tools at hand--the tools for as independent a life as is possible.
     Osteoarthritis.  My right ankle.  Zoomer, my power wheelchair, is my antidote.  Should she not be enough, I have been told that it is a matter of time--ten years perhaps--that I might need ankle surgery, an ankle replacement, perhaps.
     Osteoarthritis.  I do my best not to torture myself with eventualities.  Osteoarthritis is not a condition of steadiness or control.  Osteoarthritis is an amoeba, a chameleon.  Some days, people may wonder, "I don't understand.  I saw her in her wheelchair yesterday, now today she is walking just fine."  I wonder too.
     Osteoarthritis.  A snake, who lurks in the bushes, waiting to catch me unawares.
     Osteoarthritis.  Exercise.  Not a physical cure.  But a wellspring of mental, and emotional energy.  Exercise.  A keeping at bay of inflammation's paralysis.
     Osteoarthritis.  My right ankle.  My left hand.  My left hip.  My color-coordinated canes.  Exercise.  Osteoarthritis.
     Osteoarthritis.  A keen ear.  An accommodating spirit.  Osteoarthritis.

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.

Family Crossfires

     My family is close.  Reconciled to inevitable differences present within any family.  Reconciled.  At peace.  Not seething silently.  We are blessed.  Some families are not so blessed.
     Christmas.  Christmas cards.  Childhood neighbors and friends remain close.  Some closer to me.
     Though not closest to me, two women are on my "must send" list, nonetheless.  One is blinded by sight.  The other?  Her mother--her housemate.
     The first woman is blinded by sight.  Yet, far beyond any physical manifestation of blindness, her mind has been blinded--blinded by her own volition-- to what might be possible if she believed.  No one forced it upon her.  By unbelief--by ultimate inaction--she has taken the strongest action.
     She is tragic of her own making.   More tragic is the blind ensnarement of her mother.  Imposed Catholic guilt is a joke most times funny.  This is no joke.  This is not funny.
     Born in a generation when etiquette, propriety, manners, and grace were virtues, the mother instilled these in her children.  Or, so she tried.  Through no fault of her own, Catholic guilt is being imposed on her by her daughter.  Though not privy to their conversations, there is no doubt.
     I need you.  Don't leave me alone in my blindness.  Literally.  Since my blindness imprisons me in this house, you cannot leave the house either.  Don't leave me alone.  If you dare, you will live to regret it.  I will take irrevocable action that you will live to regret.
     The mother's golden years are being held hostage.  The daughter's potential choked.  A travesty.  Imposed.  A travesty.  Self-imposed.  A travesty.
     What may I do?  Virtuous I am not.  I cannot violate the virtues instilled by my own mother.  So what can I do?
     A simple Christmas card.  Supporting UNICEF--supporting the belief of what is possible in each child's life, if we unite.  A simple Christmas card addressed to both mother and daughter.
     Merry Christmas.

Epilepsy Chronicles: A Firm Grip

     You have a hold on my right arm and leg 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 own words--my sentences.  You have a firm grip on my mind.  You take words from my sentences.  You steal the precious part of me that, so desperately, I want to--I must give.
     You give me no clue as to where you are--no hint as to where to look.  You give me no key to find you.
     Where are you?  You are hiding from me.  Where are you?
     I try to understand.

Do I Wish I was Younger?

     Some people wish they were younger--that they could relive their lives differently.  I do not.  Don't be mistaken, I have not lived unblemished by ill-advised words, and actions.  Yet, to relive my youth differently would be to negate the lessons I've learned--the insights I've been given.
     I would return to people, to places, and to events.  Not to change them.  To celebrate them.  To honor them.  But, not to change them.  To friends, to family, you know who you are.  Words escape me.  We know what we have lived--before us is our future.
     To unlikely people my mind is drawn.  To Katie, you taught me the meaning of grace--of disgrace, her antonym, as well.  You gave me poetry--"Brazen Honesty"http://patty-pattysponderings.blogspot.com/2011/03/brazen-honesty.html--a gift I shall treasure forever.  An unlikely gift, I dare say.  A gift nonetheless.  To Janet, never before had I met, and never again will I know, a piece of work such as you are.  Into my core, "there goes another gimp," you did gore.  Yet, your words broadened my vocabulary--sharpened my ear.
     My alter egos.  Pre-school giraffe.  A ballerina.  Patrushka.  Patty Tricia.  Pat.  Ms. P.T.  Thorsen.  Zoomer.  Aunt Patty.  Roboaunt.
     To places.  Michael Dowling School for Crippled Children.  Bassetts Creek.  2625 Vale Crest Road.  Washington, D.C.  Oslo.  The College of St. Catherine.  Grand Marais.  West Publishing.  Developmental Disabilities Council.
     To events.  Teasing.  Junior high school choir class.  My first class at St. Catherine's.  Baptism.  Graduation.  Master's degree graduation.  Master's degree graduation celebration.
     Do I wish I was younger?  Do I wish my youth I could reclaim?  No.  I treasure the joys.  I honor the sorrows.  Neither joy, nor sorrow could enrich me now, if I was younger.
     Once I was asked, "If you had not been born left handed, do you think you would have been right handed?"  I was tempted to say, "If you had not been born a woman, would you have been born a man?"

Failed Attempts...Gifted Moments...

     From the moment I woke up this morning, this was a day of failed attempts--or so it seemed.
     Never setting an alarm does not mean that I value schedules any less. 7AM.  That is my awakened perfection.  Pills.  News.  Shower.  Pack.  8:15 to 8:25.  Enroute to the Y. 8:45 to 9AM. In the pool. 9:45AM to 10AM.  Out of the pool. One hour of vigorous swimming.  No calculated laps.  No.  Intentional right leg kicks and right arm strokes.   10:20 AM to 10:40 AM. Enroute home.  E-mail message review.  Writing.  Explore potential adventures with Zoomer.  Two hours outside with Zoomer.
     Yet, I work hard not to pressure myself to abide by those guidelines.  I admit, it is completely counter-intuitive, as was much of today.  I set the guidelines precisely to guide me, not to dictate when, what, and how I breathe--how I live.
     In 2009, years of pressuring myself to abide by someone else's standards for me came to a head.  In and of themselves, the standards were and are reasonable, and essential.  Corporate benchmarks.  Anticonvulsant drug prescriptions.  Essential.  
     In 2009, my life changed radically.  My body.  My nervous system.  I could not live in accord with essential.  My body--my nervous system--would hear nothing of it.
     At 49, I rebuilt my life from the ground up.  New drug dosages.  Physical therapy.  Occupational therapy. No written lists of appointments whatsoever.  I needed quiet time.  I knew what needed to be done.  Yet, my nervous system was reeling from years of sensory overload.  I needed no reminders of how I was not measuring up to expectations--even my own, especially my own expectations for myself.
    Ankle surgery.  A new leg brace.  An electric wheelchair.
    No news...no debate about health care reform.  The hyperbole hit a raw nerve.  No one said, "I commit myself to making decisions rooted in the conviction that none of us is guaranteed that we will wake up tomorrow morning with the same capacities we have when we go to sleep tonight."
     Years of education did not teach me to listen to my body--to submit myself to my body's wisdom.  Hold less in my left hand.  Respect my left hand--the irreplaceable value she contributes to my quality of life.  Break down laundry into much smaller loads.  Grasp nothing more than what my left hand tolerates.  No more of this throwing everything together.  No more putting one load of laundry in the dryer at the same time I put the previous load from the washer into the dryer.  Reasonable to most people, yet, my nervous system felt overloaded by not completing the one task--the one load--before starting the next load.  It was unreasonable to my nervous system to expect more of it than it could handle.  Yet, that is precisely what I did for years.  To have done otherwise would have meant conceding to the helpless, incapable person I felt others would see me to be.
    Attend to my ankle.  Step gently.  Alleviate walking's burden.  Alleviate walking's pain.  Preserve my ankle.
    With time, I rid myself of toxins that poisoned my essence.  Hostility.  Career potential unfulfilled.  I relinquished a nebulous, yet, grandiose ambition of advocacy.  Somehow I could save people from themselves--from their attitudes.  With a laser, I could extract prejudices regarding disabilities, and people who have them.   Or, so I thought.  I could rid the world of all prejudice, if only I used the right words.  Or so I prayed.
     With time and patience, I have added simple elements into my aging body to create a new life.  Not perfect.  Not idyllic.  But, a new life, nonetheless.
     Swimming.  Writing.  Volunteering.  Crossword puzzle solving.  Corresponding.  News.  Hyperbole censored without guilt.
     Family.  Friends.  Faith community.  Neighbors.  Acquaintances.  Doctors.
     Challenges loom.  Medicare.
     Questions remain.  What next?  Wintertime mobility?
     Failed attempts.  My knee jerk reaction.  Yet, all my life, contrary to the belief of loved ones, I believed that each difficulty has its lesson to be learned.  Each challenge has its gift to present.  I do not consult my astrologer to schedule my actions--to choreograph my life.  Yet, I have no doubt that what happens in my life is no mistake--each moment in my life is a gift to be lived.

Elizabeth Edwards. Resilience.

     I just learned that Elizabeth Edwards died today.
     I commend to you Elizabeth Edwards' autobiography, Resilience:  Reflections on the Burdens and Gifts of Facing Life's Adversities.  I read it earlier this year. 
     Reflections.
     Elizabeth conveyed a truth FAR too often missed.  Response to our lives' experiences, whatever they may be, is not a simple matter.  Reading her life's story conveyed to me the importance of living the nuances of my experiences.  To live the nuances--the complicated realities of my life--with one unified response, with one broad stroke of a brush, is to miss Elizabeth's conveyed truth.
     Burdens.  Gifts.
     She addressed the complexities of her husband's affair in a way worthy of our notice.  Elizabeth made a distinction between her relationship with her husband, and her partnership with John as a parent to their four children--three of whom are still living.  When questioned by confounded reporters, as to why she continued to have amicable contact with John, she said something to the effect that John is a good father.  She said she did not want to get in the way of those strong relationships continuing.
    Life's Adversities.
    She lived realistic optimism.  She did not deny what she was facing.  Yet, she took actions necessary to co-create a positive life for herself--for her family.   She used her life experiences to support research and exploration.   My rereading is needed to listen as to what actions I may take in my own life.  How do I--how do we--live our lives.
     I pray that I do not elevate Elizabeth to the precarious perch of a hero.  She deserves a more personal response than heroism conveys.  I do not want to romanticize how she handled her life experiences.  That would be to drown out the truths she offers with noisy. self-serving declarations.
    My prayer is that I and others may be motivated to read her autobiography, and learn what she can teach us regarding resilience, reflection, burdens, gifts, and adversities.
     Resilience:  Reflections on the Burdens, and Gifts, of Facing Life's Adversities   
                                                                      Elizabeth Edwards, 1949-2010