Mourning A Body--My Body

My left hand is my life's blood.  It is the vehicle I use to craft words, the tool I use to live.  My right hand has never served me.  She never will.  I know that.  Blame is not for me to assign.  Anger is not mine to wield.  My right hand has never served me as others' have.
This week, a gradual diminishment--a lifelong fear--came to a head.  I made progress to the outer world.  Not by others misassigning it.  I didn't misassign it either.  Rather, I rallied the consolation I need.
A mere appointment for hand therapy, hand x-rays, and a neck MRI did not deliver this week to me...not alone.
Every 18 months or so, I receive a questionnaire to reauthorize my long-term disability insurance.  A formality perhaps.  Yet, this time it hit me hard--it hits me in the gut.  She pulls no punches.
I have forgotten the sound of my left hand's voice propelling me up out of bed in the morning.  Did she ever speak?  Have I lost my hearing?  Am I deaf to her call for help?  How long has she--how long have they--been gone?
Did I abuse my left had so much--with such bravado--that I have lost her forever?
Will remorse...a contrite heart...a confessing of my wrongful pride...be enough that my hand may be entrusted to my service?
Voicing that thought through my still-working fingers is embarrassing.  Am I losing dignity as I stand aside of my body?
I hold on for dear life in the bathtub as I pull my body to a standing position after bathing myself.  Will this be the time I will lose my grip and fall?
The time for contrition has come...a shower/bath bench.  I have looked from afar.  This week's questions--the questions are served by only one answer.  I confess a bit of vanity remains.  With Amazon.com's hand to hold mine, soon I will be the proud owner of a reasonably-priced teak shower/bath bench.
I mourn a body--my body.  Is it mine to blame?  Is it mine to wield anger at because it is not serving me.
I must serve my body regardless of how it serves me.
Thirty-two years ago I was baptized--I joined the Catholic Church.  Through friends, I learned it was more than possible to blend intellect into faith into my being.  Skeptics to that blending asked, "But...resurrection...that just doesn't make any sense!  Do you believe in resurrection?  Do you believe in The Resurrection?"
I did not know I did not understand what words to utter.
Time has passed....years have elapsed....life has changed me...life has changed my body....much over many years has made now sense at all.
Do I understand resurrection?  Do I believe in resurrection?
No.  I must.  I am a woman of faith, I am a woman of hope.  I am a woman of love.  I am a woman of belief.
Do I understand The Resurrection?  Do I believe in The Resurrection.
No.  I breathe seeking to believe what I do not understand.
I mourn a body--my body.  I mourn a bath--the loss of a bath.  I was always a woman of a shower.  So, why am I mourning?  I seek understanding that has yet to be delivered to me.
I mourn a body--my body.

My Handwriting...My Spirit...

     I see your face before me--barely recognizable.  Not because of pen scratchings, as some might think.  No, I am surprised by how far we have drifted apart--in still waters.  My spirit.  Your body--of letters, of words.
     Not a divorce.  Not bitter.  Not amicable.  Just an imperceptible drifting in still waters.
     Not an annulment.  Our partnership.  I seek no clean break.  No erasure.  I seek no space for a new bridegroom.
     I seek not sole custody of our children.  Our children.  Conceptions of my spirit borne of your fingers, --of your hands.
     I protect our creatures--our creations--with block printing.  I intend no defensiveness.  Yet, no one can take me past my blind spot.
     Tell me.  Show me.  Your handwriting.  Others' handwriting.
     Where does legibility lie?  Where does readability rest?
      I must reconcile with you.  I must revel in time perched on my bed with pen in hand, and paper before me.  I know how to type.  I love touching keys.  Yet, handwriting touches more than my hands--he touches my spirit.  He is more than an "it,"  he is a "he."

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.

Betrayal of My Body...Stolen Dignity

    Selective amnesia.  I just noticed two posts in a row addressed a connection I see between health insurance, and auto insurance.  Though I feel a tad guilty for abusing the privilege of the precious time we are given each day, the two successive posts do speak to a larger truth about my daily life.  Most of my life, I have tried to stay abreast of world affairs, and the nuances of current affairs on the national, and local levels of government.
    Since I stopped working due to my cerebral palsy, and osteoarthritis, I have become keenly aware of inner calm--the priority, above all else, that my pursuit of inner calm must take.  My neurologist diagnosed that I have what is known as "intentional tremors."   Throughout my life, my left hand has been the powerhouse that has muscled me through college, a master's program, a 24-year career at a legal publishing company, and through living independently.  I have never had full use of my right hand, so, not until three years ago did I even question the role that my left hand plays in my life.  A friend, who has cerebral palsy affecting use of her right hand, and I have often said that we were frightened of something ever happening to our left hands.
    Then, July 8, 2009, the life as I had known it, changed radically.  Optimist that I always have been, I can say that the ending of my career in the paid workforce made possible the diagnosis of an unknown, frightening tremor in my left hand and arm.  The only possibility to explain my tremors seemed to be Parkinson's Disease.  It was not.  It may sound strange, but, being told that I had--that I have--intentional tremors enabled me to determine how to  live with it.
    Intentional Tremors.
   At its core, intentional tremors are shaking that becomes more intense the more a person with them tries to do a given task.  Three tasks come to mind.  Eating.  Drinking.  Handwriting.  To some, reasonable accommodation is a term that describes a central concept within the Americans with Disabilities Act of 1990.  To me, reasonable accommodation is my intimate.  I try not to succumb to stolen dignity--the betrayal of my body.
    Drinking.  Reasonable accommodations took time.  Straws.  But, not just any straws.  With any reasonable accommodation, there must be a reasonable amount of fun, without the bendable, store-bought disposable straws, or boring straws found in catalogs for individuals far older than I.  To that end, I found colorfully-ribboned straws.  I do not want to be consumed by a body that confines me to a world outside the vibrancy life offers.
    Eating.  Strange though it may sound, eating in public is truly humbling.  While drinking may be reasonably accommodated, eating in public is much trickier.  I have never been much of a soup aficionado.  Thank God.
Forks are my friends.  With them, I have a half a chance with food.  With the exception of Breyer's vanilla ice cream, spoons are a slippery slope to use.  Knives are fairly useless, not obstacles, not my enemies, just benign tools.
    Handwriting.
    For a lifetime, my handwriting--its readability--has been a bone of contention.
    My high school teacher said of my homework, "I know it is from you, but, I have no idea what it says."  Ouch! That hurt.  I loved--I love--to write.  That hurt.
    So, in some ways, handwriting has been less traumatic, or less of a new trauma with which to cope, and adjust.  I learned to type one-handed in high school.  Technology has made available technology that I may use one day should my left hand give up.  I am  in no rush.  Typing--or the worlds it opens--brings enormous joy.  If need be I will learn to use a program called Dragon Naturally Speaking.
    Dragon Naturally Speaking does not ameliorate a very fundamental loss.  At Christmastime, receiving cards and letters is enveloped in something as special as the letter.  The handwriting of a friend, or a family member engenders emotions far beyond that which is ever conveyed.  I may be presumptuous to believe that others feel the same of me or my written communication.
     Yet, the pain of the significant loss of my handwriting due to my intentional tremors runs deep.  No one can take from me my  signature.  I do not fear identity theft:)  No one can duplicate my handwritten signature.
    I could torment myself by focusing on any of these realities.  I cannot run from them, literally, or figuratively.  Call me a Pollyanna, if you must.  Yet, I can concentrate my energies on my signature abilities,  gifts, passions, and people in my life.  Optimism.  Humor.  Purpose.  My survival skills.  My pathway to inner calm--inner peace.  I am no saint.  One look  at my bedroom can tell you that.
   Essential to pursuing passions is filtering out all of the excess noise that surrounds hot button issues.  Essential to pursuing my passions is in concentrating on what is truly life-giving.  I cannot engage myself in--embrace a world that offers no receptiveness to the nuances of living vibrantly.

Verbal Abuse

     Recently, I heard myself to say that verbal abuse, and sexual abuse are not the same.  I abhor little.  Yet, abuse of any form, I abhor--tremble away from.  I cannot speak to sexual abuse from first-hand experience.  I know one, maybe two individuals whose lives have been touched--violently touched--by sexual abuse.  Hostility, and submissiveness, respectively, make it difficult for me to address with compassion my friends' experiences.
   Hostility, and submissiveness are common responses to sexual abuse.  Yet, I do not feel I may address the issue with the respect it deserves.
   For those reasons, I direct my ponderings to what I do understand from life experience.  Bullying.  Verbal abuse.
   I do not feel the piercing sting--the deep pain--inflicted by Palsy Patty, and the mimicking of my bent right arm in my face during my childhood.  It was not everyone--each of my peers, or every day of my life.  Yet, I never knew the moment, when the bullying would attack.
    My only response was to identify the words I could speak--the explanations I could give--that would make other kids understand why I looked different.
    I do not understand.  Contrary to each and every belief of everyone I knew, I knew that all I needed to be given were the words--the explanations--that would make people understand.  I knew that I could create the understanding that did not exist--in which kids and parents were not willing to engage.
    Compounding the verbal abuse---the lack of understanding--of my peers was the attitude--the belief--of adults that bullying--verbal abuse--was nothing more than a phase kids go through.  No credence was given to the notion that the self-esteem of the kid being teased was not a phase that would be outgrown.  No credence was given to the notion that the nurturing of positive self-esteem was essential--the positive self-esteem of kids who were being teased.  I understood.  Yet, far deeper than the physical disability I had, I was disabled from enlisting the support of my parents, the parents in my neighborhood, the authority figures--principals, most teachers, and counselors--people who I thought were supposed to know better.
     I do not understand quite where my conviction came from--my belief that I could nurture understanding, if only some one of these adults would give me simple, logical, reasonable, understandable words, and explanations.  Nascent faith, perhaps?  I do not know. All I do know, is that in eight grade, I made a commitment to myself--I did not have a sense of God, or that might be what I might call it--to dedicate myself to work toward nurturing the understanding that I did not experience.  It took me years to understand--to identify--what  form my missionary work might take.  Writing?  That seemed the most likely to me, yet, I had no notion of what my outlet would be.  My self-confidence--my introversion--did not lend itself to speaking, or assuming any leadership positions.
    1978.  College.  A staff member asked if I was interested in serving on a campus-wide "Handicap Awareness Committee."  Bingo.  While people close to me did not understand my involvement, my dedication that precluded the studying I should have been doing, I knew better.  I knew that if there was any hope of my making any meaningful contribution to society, I needed to work through the issues
    Pervasive though my paralyzing fear was--fear that others would criticize me, and my actions--I assumed leadership of the Handicap Awareness Committee.  I was driven by the knowledge that I was pursuing my missionary work.  No trips to  Central America for me.  My missionary work was right at home.
     My missionary work was being carried  out.  I spoke to education students at a college in South Dakota.  I nurtured understanding in future teachers of the necessity of nurturing understanding, and building self-esteem.  I shared the transcript of the speech I gave with parents in my neighborhood.  I took the necessary risk of building understanding--of communicating to them what I had not been able to do twenty years earlier.
    Palsy Patty died.  No longer would she have negative, hurtful power over me.  I do call upon her when communicating understanding, and compassion are my call to do.
     "There goes another gimp," spoken by a coworker, who must have seen someone behind me with a walking disability, called the spirit of Palsy Patty to me in an instant.  Gimp is not a word I use to describe myself.  Gimp is not a word worthy of my speaking--reflective of the respect of other individuals I am called to express--to or in regard to any other human being.
     Verbal abuse is not the same as sexual abuse.  Yet, they do share an untenable violation of the human spirit.
     Verbal abuse.  Hostility.  Anger.  Submissiveness.  Others may choose to respond in such spirit.  I cannot respond in such a spirit. [In the heat of political debate, and hyperbole, name-calling of the individuals with opposite convictions is unthinkable.  Yet, far too often, that seems the norm.] It is not a matter of whether I will not respond so.  My will is not in question.
     Verbal abuse.  For a lifetime, I have been called to nurture understanding, build self-esteem, and most importantly separate actions from the individuals responsible for their commission.  Verbal abuse--name calling.  Physical proximity has no part in the commission of verbal abuse.  I abhor the infliction of any derogatory word on the basis of different beliefs, or actions.
    When I asked my father why the kids were teasing me, he said, with deep love, "There is nothing you did wrong, it is something wrong with them."    Emotionally, I did not question his love.  Yet, I could not reconcile how something could be wrong with the kids teasing me.  Young as I was, that seemed an untenable response.  An eye for an eye?
     Verbal abuse.  Bullying.
     Thank God, bullying is finally getting its due in the United States.  It has taken us until suicides rooted in sexual orientation-based situations for society to take bullying seriously.  Suicides are the sad impetus to take seriously a grievous violation of the gifts of being human.
     Verbal abuse.  Bullying.
     Whatever the subject may be, whoever the object may be, I cannot so engage.  Such is my missionary work.  I do so act.  With Compassion.  With Joy.  With Resolution.
     Verbal abuse.  Bullying.
     How do you respond?  Do you erect physical boundaries?  Or, is defamation limited to those human beings within your earshot?

A Changing of the Guard

     This week, a pronounced changing of the guard came clearly into view.  Two lives--two people--who have given me immeasurable strength were changed.  One by illness.  The other by death.
     Sunday.  Imminence.  Foreboding.
     How is it possible to owe more to someone than your life?  I don't know how.  Yet, I do.
     Sunday morning.  A voicemail system flashes the unnerving red signaling a call missed.
     A quart of blood lost.  Unknown cause.
     Wednesday.  Tests done.  A relatively clean bill of health.  With equal parts exhaustion, and relief, she returned home.  Yet, a huge toll has been taken on her.  Physically.  Emotionally.  Psychologically.
     Wednesday.  A gentle soul died.  Not before living very fully for many years.  Not before giving me, and many others, strength from his weakness.  Not before teaching me, and others, how to live quiet dignity.
     Thursday morning.  A never-before heard call.  A call to offer my hour's swim in thanksgiving to him--for him.  Unfamiliar though the call was, the message was clear.
     Friday.  The quart of blood lost to the woman to whom I owe my life, and so much more, is being restored more slowly than it was lost.
     My sense of imminence--forboding--has been calmed.  Yet, the strength has passed to me to offer.  The time for me to offer something back for all of the strength she has offered to me for more than a lifetime is now.    
     What will my offering be?

Neat Handwriting

     "Based on the handwriting, I know it is yours.  But, I have no idea what the paper says," my high school teacher said offhandedly.
     I laugh.  What else can I do?  What can I say?  I love school. I want to do well.  How hard did she try to read my handwriting? Is it just an excuse?
     I don't mean to be--I don't want to be--defensive.  But, tell me, "What constitutes neat handwriting?"
     ...
     I have had a wonderful weekend at Lake Superior.  How can I express my thanks for our time at Bluefin Bay?  A poem!  Yes, a poem.  Ode to Bluefin.
     The words flow from my mind.  While on the bus home, I craft the poem in my handwritten words.  Carefully shaped letters.  Carefully drawn between my ode's stanzas?  Hand-sketched bluefins.
     The words are written.  The bluefins sketched.  The ode complete.  My gift is ready to present to Mom.
     "Thank you for the poem.  I want you to know, I typed the poem, 'Ode to Bluefin,' and I framed it."
      I don't mean to be--I don't want to be--defensive.  But, can you tell me, "What constitutes neat handwriting?"
     ...
     Diagnosed.  Intentional tremors.  Cerebral palsy.  Diagnosed.  Long-term disability.  Certification questionnaire.
     "Itemize what you do from the time you wake up, until you go to bed at night."  "Address the envelope, and return it to our office."
     "I will type the form, so that my handwriting does not interfere in the message of my need."
     "No, complete the form in your handwriting, so that they may see your need."  Such was the essence of my family's advice.
     I don't mean to be--I don't want to be--defensive.  But, can you tell me, "What constitutes neat handwriting?"

Poster Cures

     I do not ask for cures--not for poster cures, at least.
     Poster children may raise money for research.  Research leads to cures.
     Yet, poster children play on other people's guilt.  Poster children are perched on the pinnacle of, "she is worse of than you are."
     Research is very worthwhile--it is a necessary endeavor.
     Yet, how do I reconcile poster children--their pinnacle--with the benefits they bring to research.  How can we reconcile poster children with the benefits they enable through research.
     Cures do nothing to address PAST anguish.  Cures ignore anguish of today.  I cannot seek cures at the cost of other's pain.  I may not hide between emotions of sorrow or pity.  I may not hide behind the pain others feel.
     Maybe...just maybe...if I raze the roadblocks of pity and sorrow each day, I may help another person to alleviate their pain--the pain of this day, of this moment.
     I may not hide behind "underprivileged--behind "those who are worse off than me." 

An Invitation

This morning, I greeted a woman at Cabrini, whom I have known by face for many years.  I, like many others, have dismissed her as having much noteworthy to offer.  In a parish--a faith community--with so many social justice activists, this woman has been overlooked.  I am not proud of that fact.
     This week, I looked on the Cabrini website.  I was taken for a moment to see a beautiful picture of the front of our church.  Who took the picture?  You guessed it.  The woman overlooked by many.  I was given the opportunity to express how much I enjoyed the picture.
    I was touched.  In many ways, I was moved.  She was clear.  She knew that people did not like her, per se. She explained that she had been diagnosed with Asperger's Syndrome.  Her feelings--her experience of other people--were clarified.  Awkwardness in communication.
     She expressed frustration.  "At least with you, they can see your disability."  She asked me about it.  I explained the umbilical cord wrapped around my neck five times, and the resultant cerebral palsy.  Yet, I conveyed genuine understanding of her frustration.  I explained my epilepsy to her.  We talked.
     She spoke of determination to continue working--the desire of supervisors that she stop working.
     I encouraged her to continue taking pictures.
     I learned a lot this morning.  I have been dismissive of her prayers for the Minnesota Vikings football team, at various points.  I did not view this woman to be someone, who was driven by social justice issues per se.  Fleetingly, I have asked myself, "what draws this woman to Cabrini."
    This morning, the priest, known for being outspoken on controversial issues offered a clue.  He juxtaposed recent objections to his outspokenness with the deaths--the wakes, and burials--of an 11-year-old girl, and an adult.  He needed to leave early to attend to the services for those individuals.  He said the message of this week's events to him was that we needed to be more about love.
     That may sound trite.  Not new, or earth-shaking.  Yet, in those moments this morning, it was clear.  His outspokenness is not pursued for its own sake.  His outspokenness was--is--deeply felt.
     He invited us to pray for a more loving archdioceses.

Zoomer Chronicles: A Fine Line

     This morning, I ventured out to review problematic intersections and issues in Downtown St. Paul.  The adventure heightens my attention to several facts.
    After having three drivers cut in front of me in controlled intersections--in a period of two weeks--it seemed I needed to draw attention to the overlooked safety issues. I want to be prepared for the yet-to-be scheduled time with a television producer to highlight--to focus, literally--attention on public safety issues.
     Several personal facts have come to light in recent days.  While I do what I can to highlight public safety issues for others, I need to combat internal issues.
     First, I have retreated from a healthy pace of travelling within the downtown area.
     Second, timidity and fear replaced determination and confidence--not riskiness, but confidence.
     Cooler weather intensifies my concern that I will be isolated by poorly-shoveled sidewalks, and ice.  I need to back up.  This will be my first winter with Zoomer.  Questions abound.
    What are Zoomer's intended capacities in the outside during wintertime?  Am I realistic to expect that I might have some outside travel capacities during the winter?  What will my limitations be?  What accommodations are open to me?  Are there additional safety precautions that might improve, or extend my capacity to travel outside during the Minnesota winter months?
    I know that I should not expose Zoomer to rainy weather.  I know that I should not expect to navigate ice.  
    I know that Zoomer can--will be able to--navigate the skyway system during winter months.  [The skyway system is a Godsend.  The system of enclosed walkways between downtown buildings--walkways located on the second floors of buildings--do wonders in curbing a paralyzing isolation that would occur otherwise.]
     As wonderful as skyways are, it is extremely important to get outside--to be exposed to the sun--to all elements of the out of doors.  Oddly, prior to Zoomer, having to be outside was not an issue, or priority for me.  I took for granted my capacity to get outside and be outside.
  Interesting what it takes to challenge one's values, and priorities.  Coming days and months will clarify what, if any realignment of values, and priorities occurs.

ADLs: Activities of Daily Living

     The term activities of daily living, or ADLs, refers to the basic tasks of everday life, such as  eating, bathing, dressing, toileting, and transferring.  When people are unable to perform these activities, they need help in order to cope, either from human beings, or mechanical devices.
         Measuring the Activities of Daily Living:  A Comparison Across National Surveys
         Joshua M. Wiener, and Raymond J. Hanley, The Brookings Institution; Robert Clark, and Joan F. Van Nostrand, U.S. Department of Education 
     I was paralyzed.  EAT. FEED YOURSELF WITH FOOD THAT HAD BEEN PREPARED FOR YOU. VOLUNTARY BLADDER AND BOWEL CONTROL OR ABILITY TO MAINTAIN A  REASONABLE LEVEL OF PERSONAL HYGIENE.  BATHE (TUB, SHOWER, OR SPONGE.)  TRANSFER FROM BED TO CHAIR.
     I was paralyzed.  These words screamed out--pierced my eardrums.  Though still able to perform these tasks with some adaptive devices, the day I could not perform any of these skills came into focus.  Though not imminent, a potent image nonetheless.
     Breathe in....breathe out...breathe in....breathe out...
     Stark are the activities of daily living on paper before my eyes--they were then, they remain so.  Before assessing these activities, my pierced ears must be muffled.  My jangled nerves quieted. My tight stomach calm.
     Eat.  Feed yourself with food that had been prepared for you.  Voluntary bladder and bowel control  or ability to maintain a reasonable level of personal hygiene.  Bathe (tub, shower, or sponge.)  Transfer from bed to chair.
     A scale.  Rate myself.  Simple.  Or so it seemed.  Straightforward.  Or so it seemed.
     1.  I can perform this activity regularly.  2.  I can perform this activity with the use of equipment or adaptive device.  3.  I cannot perform this activity.
     The activities of daily living are the province of a child to learn.  I am an adult.  Diminishment is the province of senior citizens to accept.  It is a realistic expectation that senior citizens should need equipment or adaptive devices.  It is within reason to watch someone else confront diminishment.  Senior citizens learn that they "cannot perform this activity."  Or so it seems.  Yet, I am not a senior citizen.  I am 51.
     Were these my only choices?  Could I take an essay test?  A multiple choice test of a life lived proving false the truths set before me to live.  Yet, those were my choices.

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?"

Epilepsy Chronicles: Ignorance. Understanding. Transformation.

     My epilepsy--my brain damage--may not be willed away.  Others may not wish it so, and be so fulfilled.  I may not will it away--whatever amount of strength and stubbornness I will, I may not be so fulfilled.
     "Focus on the positive and ignore negative behavior,"  Mom's words reverberate in my memory yet today.
     Ignorance was never an answer.  Ignorance was never the answer for me.  Ignoring the ignorance of other people will not lead to a positive result.  It never could be.   Adding two negatives to render a positive result may work in arithmetic.  Never was I a star math student--not by a long shot.  But, my life is not an equation--it never was.  It never will be.  I will never will it to be so.
     Other factors were at work.  Other factors are at work.
     Ignorance--ignorance of others--is not a manifestation of malice.  It can't be.  I am not a servant of malice.  I cannot, I will not be.  The only hope of advancing understanding is to be willing to learn--to be committed to look inward...to the knowledge of other people, to the language they speak.
     Malice is not an evil in which I may invest myself.  The return on investment--for me, for God, for others--serves no one.  Evil is not a commodity in which I may invest my resources--my being.
     Ignorance--my ignorance of other's experiences, and motives--is an  indulgence I can ill afford.  To the contrary, ignorance, doubt, questions, and anxiety are--must be--invitations to which I engage my being.  I cannot presume that I have the answers--the answers universal to everyone with seizures, cerebral palsy, or osteoarthritis, for that matter.  Too many variables are involved in the equation to arrive at one simple answer of facts.

Mirrored Outward Image. Egami Drawtuo DerorriM

I cry pains of rejection...

Yet...

When my outward image egami drawtuo

Is mirrored derorrim to me

In the body of another person,

I fear....

I am not the model of acceptance

I so desperately seek in others.

When my outward image egami drawtuo

Is mirrored derorrim to me,

What questions do I need answered

To quell my fear?

When my outward image egami drawtuo

Is mirrored derorrim to me,

How much reassurance must I be given

That I am beyond the pain of that teenager,

Whose Strengthe were hidden from others

By her outer packaging?

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."

Hope...Understanding...

My child seeks hope.
My child seeks understanding.

For a lifetime,
I have sought hope
Hope of understanding
Understanding much.

My child sought understanding.
What is cerebral palsy?
What is epilepsy?
My child sought understanding.

My child sought understanding.
How do I stop the teasing?
If you give me just the right words,
I know I can stop the teasing.
My child sought hope.

My child seeks understanding.
What can I say?
What can I do?
Give me the magic words.
My child seeks hope.

My child seeks understanding.
This was given for some reason.

Don't tell me to ignore this.
Don't tell me I must ignore a part of myself.
Don't tell me to sacrifice myself.
Is that really the secret to understanding?
I do not understand.


Is the price of your love
That other people must be wrong?
Is the cost of my love that other people are wrong?  


This day, may we love  freely.
In our diversity, may we all be worthy.

Zoomer Chronicles: Open Doors....Open Spaces...

     Open doors.  Open spaces.  I am new to navigating narrow halls, small elevators, doorways, and other such barricades.
     Yesterday, literally by accident, I was called to return to a well-established business that I have supported for nearly 30 years--an optical store.  Although it is true that they were a bit snobbish, they were convenient physically.  Just down the block from my first downtown home, they were the obvious choice.
     A fall while volunteering branded my left temple with a touch of red, and positioned my purple glasses askew.  As quickly as my temple will heal, I needed my purple glasses to be properly placed on my face.
     Aware that the doors were not open to Zoomer, I justified my continued business patronage by telling myself that I did not need to visit the store often.  Yet, "did not need to visit the store often" is too often to meet my needs.  Asking for help is one thing.  I am more comfortable in doing so now than before Zoomer.  Yet, I found myself isolated from help longer than I was comfortable, and more than any pride I feel about having to ask for help.  Although there was no physical threshold to surmount, the personal threshold--is too great.
    Dignity and stolen dignity are two distinct creatures.  Dignity is the willingness to go out with Zoomer, knowing that there will be mishaps with door openers, nicked walls, and the like.  Dignity is recognizing that going out with Zoomer is more important than pride's perfection.
     Stolen dignity is cavalier business practices--practices that dismiss the reasons behind making design adaptations, or accommodations as outlined in the Americans with Disabilities Act.  [I confess  I need to return to the precise call of the Act.]  Stolen dignity is dismissal of business patronage, and her demographic.  Stolen dignity is the affirmation that only individuals who do not use wheelchairs are the potential customers of a given business.
    I am not fierce in my advocacy.  I am new to navigating terrain in a wheelchair.  The hijacker of my nervous system lurks in the weeds waiting for me to lose my cool demeanor--my inner calm.  So, I negotiate with the hijacker.   My business loyalty will not open the doors--open the eyes--to the obstacles they place between their cash registers, and the potential of a broader customer base.
     Dignity.
     I shall preserve my dignity.  I shall meet her needs.  I shall knock on the door on another downtown optical business to see if they have seen the light.

Dignity...Defiance...Grace

     During this morning's swim, two words came to mind--dignity, and grace.  Are they related? If so, how so?
    Dignity seems firm,  Grace seems more ethereal.
    Dignity brings to mind my maternal grandmother.  In 1970, long before today's advances in the treatment of breast cancer, my grandmother had a mastectomy.  Mom said that it ravaged my grandmother physically.  Yet, she was one of the most dignified, elegant women I have known.  She had her faults--her superstitions.  Yet, she was an amazing model of dignity to me.
    Dignity.  According to the Online Etymology Dictionary http://www.etymonline.com/index.php?search=dignity&searchmode=none dignity is derived from "worthiness," from dignus "worth (n.), worthy, proper, fitting" from PIE *dek-no-, from base *dek- "to take, accept" 
   Grace. According to  the Online Etymology Dictionary, grace is derived from  late 12c., "God's favor or help," from O.Fr. grace "pardon, divine grace, mercy; favor, thanks; elegance, virtue" (12c.), from L. gratia "favor, esteem, regard; pleasing quality, good will, gratitude" (cf. It. grazia, Sp. gracia), from gratus "pleasing, agreeable," from PIE base *gwere- "to favor" (cf. Skt. grnati "sings, praises, announces," Lith. giriu "to praise, celebrate," Avestan gar- "to praise").
    Dignity and grace floated into my consciousness in the midst of a personal valuation--how do I live?
    To live with dignity is a worthy aspiration.  Authentic dignity, not righteous indignation regarding individuals, or principles.
     Grace.  Something seems missing.  Grace can seem to be a soft way of living.  Soft may be too soft of a term.  But, let me offer another term that contrasts with grace to clarify grace.
    Defiance. 
    For many years, I lived defiantly.  I was judged to be incapable of performing given tasks on numerous occasions.  Although not always expressed, it was implied.  My response was, "Do you wanna make a bet?"  I wanted to defy expectations of me, and demonstrate what I could do.     
    According to the Online Etymology Dictionary, defiance is derived from  c.1300, from O.Fr. desfiance "challenge, declaration of war," from desfiant, prp. of desfier.
    Defiance was not necessary.  Now it is counterproductive.  I cannot entrust my body to the forces of defiance.  I must immerse my spirit in grace--seek favor from God--so as to live fully.     

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.