I Can't Remember When....

Most people lament, "I remember when..." with the delusion that those words spoken may turn back the clock to a different time.  Frequently, this is spoken regarding a job--a bad, boring job.  For many, many years I worked in a job from which I felt that my full potential was not being employed.
As many years as vehemence flowed constantly, I cannot remember that feeling.  I do not want to be taken back to that time.
In 2009, I had to stop working.  I have been known to say, "My get up and go got up and went."  Essential tremors and osteoarthritis allied with the well-entrenched cerebral palsy, and her silent partner, epilepsy to execute a "successful" coup d'etat over life as I knew it.  In 2009, I could not fathom the notion that I might live without working in the paid workforce.
Every 18 months or so, I must submit myself to an external reexamination of my incapacity to return to the workforce--a reverse performance review, if you will.  I am not a submissive person.  For now I must be.
Every 18 months or so, I must return to four humbling questions:
1. Has there been a change in your condition in the last 18 months?
2. If  "Yes" please describe the specific change or changes?
3. Please list all of the types of activities that you do during the course of a typical day.  What do you do from the time you arise in the morning until you retire at night?  Do you require assistance?
4. Please place the number shown next to the statement that most accurately reflects your ability/inability to perform each of them:
(1) I can perform this activity independently
(2) I can perform this activity with the use of equipment or adaptive devices
(3) I cannot perform this activity
      a.  Dressing
      b.  Toilet
      c.  Feed yourself with food that has been prepared and made available to you

            d.  Voluntary bladder and bowel control or ability to maintain a reasonable level of personal hygiene

e.         e.  Bathe (tub, shower, or bath)

            f.  Transfer from bed to chair

     On the one hand, there are many reasons why it seems that I should not make the confession I do now, I must submit to this confession.  As easy as it may seem to some to be hereto submissive, let me set the record straight.  It is not.  I understand the need.  Yet it is not easy.  

    I seek no dramatic persona.  Purely and simply I am brought to my knees whenever these questions are set before me.  The first time I faced these questions, they were excruciating.  These are not questions that elicit dignity.  These questions redefine what honesty must be--what the honesty of daily life is.  Try as I will to soften the blow, each time these questions bring me to my knees.

     My concept of someone who is no longer able to be in the paid workforce is that they are bedridden.  Yet, I am not.  

     I live within my limits working with what remains--an important part of those limits is that I cannot employ my body in the paid workforce.  

     I cannot remember when I worked by the time and revenue demands of a large corporation.  

     I pray I may work my way through this reexamination with honesty, integrity, and my dignity intact.  When can I nap?  Where is the Breyer's?

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.

Antibullying and Religious Freedom

     I am a reasonable, rational person--most times.
     Antibullying legislation is being opposed by the Minnesota Catholic Conference, and Catholic dioceses in Minnesota?
     Why you ask?
     Antibullying legislation violates religious freedom!
     How!
     I am Catholic.  I was drawn to Catholicism by virtue of peace and respect that pervades Catholic traditions.
     Bullying cannot be tolerated in a civil society.  It just can't.  Case closed.
     Antibullying is an instrument of moral, and ethical accountability, which the Catholic Church must embrace.  Freedom without moral and ethical accountability is hollow at best.
     Bullying is not an academic matter to me.
     Bullying.  Patty.  Bullying.  Palsy Patty.  Bullying.  Being tossed off the junior high bus seat.  Bullying.  The principal, "Just bring in the names of the bullies, and we will take care of it,"  Bullying.  Risking a junior high school friendship-- getting the names of the bullies.  Bullying.  The principal, "Oh, we can't do anything."  Bullying.  Mimicking my bent, cerebral palsied hand.  Bullying.
     Forty years have passed between then and now.  Yet, my visceral response to bullying is undiluted.
     1974.  I vowed that whatever form it might take, I would act to ensure that no other individual had to experience--endure--the pain--the stolen dignity that bullying effects on innocent human beings.
     Bullies moved me to embrace the respect and peace that Catholicism exuded--the Treasure of Christ.
    The Catholic Church opposes antibullying legislation in the name of religious liberty.  How!  Tell me how!
That is unconscionable.  Absolutely unconscionable.
    Being Catholic has taught me to be a Child of God.  Not in the level of my maturity.  Being Catholic has taught me to be a Person of God--full of unjaded wonder, untarnished awe at life that surrounds me.
    Being Catholic has taught me to be a Person of God.  Not in the level of my maturity.  Being Catholic has taught me to be a Person of God--embracing joy, embracing God.  Relinquishing temptation to be held captive to the dark skepticism and cynicism of life that surrounds me.
    Antibullying legislation is not an obstacle to religious liberty.  Antibullying legislation is an instrumentt of love--a staff to guide us into human decency.

If My Life Was Perfect...

     I have struggled to advise a family member as to how to fulfill their unique human potential.  Knowing the position of respect bestowed on me has given me a sense of responsibility.  Only following the Boston Marathon Bombings have I been given an inkling as to how to fulfill my responsibility.
    My family member lacks the sense of how to fulfill his adult responsibilities--fulfill his human potential.  Ascribing responsibilities on other intimates how they have failed their responsibiltiies to my family member has clouded his willingness to look at his own human potential--the gift he has been given by God--by his belief in God.  I know that belief exists in him.  I do not know the form of belief.
    My belief--the form of my belief--calls me to offer something.
    From an unlikely source--the Boston Marathon Bombings suspect--I understand one way--one something--I may offer.
    Optimist--idealist--that I am, recent years have taught me, "life is not perfect."  Self-pity is not the sum of that equation in my life.  So where does that leave me--how does that affect my offering to my family member.
     A List.  An Itemized--A Humbling List.
     If My Life Was Perfect...    
     I Would Not:
          Need to wear my ankle foot orthotic--my brace on my right leg
          Need to walk long distances with a cane
          Need to use a wheelchair
          Need to take medication to control my intentional tremors
          Need to take anticonvulsants to control my seizures
          Need to grab the right handrail with my left hand when walking up or down a flight of stairs
     I Would Not Fear:
          Outstretching my left hand--lose the use of my left and right hand by:
               Opening doorknobs
               Carrying heavy bags of groceries
               Carrying heavy loads of laundry
            My capacity to stand up from the ground
     People Would:
         Think my handwriting was beautiful

The System's Face. Me. The System's Face.

     2009 found me at my stamina's end.  In alphabetical order, cerebral palsy, epilepsy, osteoarthritis converged with the aging process.  My get-up-and-go got up and went.  A sharp mind and 49 years under my belt--I was left to build a new life.
      A lifelong follower of the news, diagnosed anxiety left me stressed beyond the days' news to bear.  Though "a bleeding heart liberal" by common parlance, no longer could I listen to defenders of the system--the safety net for those unable to work any more than I could tolerate, I cannot tolerate those with no time for--no understanding of--why any "system" might need to exist.
      I paid into "The System" for more than 25 years.  I paid into Social Security.  I paid into private long-term disability insurance--not so that I might cash in some day.  I "paid in"--I invested in--because, as much as I believe "all men [and women] are created equal,"  it is with no cynicism that I say, "life is not equal."
      Not everyone lives with an equal inventory of life's parts.  Bodily.  Economic.  Social.  More I am sure.  Life is not Perfect.  For whatever reason--however it manifests itself--each life is not on the same level with the same resources--the same needs.
      Yet, each life is precious.  The System is the Net to protect those lives.  Not for pity.  Not for poster children to yield tears from others, raise funds, or intimidate others into different beliefs.  Such defiles the very preciousness it claims to magnify.
       In 2009, I was brought to the front door knocking at "The System," with need.  No begging.  No laziness.  No nefarious intent to abuse--to cheat--The System.  I came to the front door of "The System" with need and guilt--Guilt with a capital "G," that I was not living up to the Ethic I was raised to uphold--the Work Ethic.  No bravado, just the conviction that I had to contribute to society--to the community in which I live.
     Nearly four years later, I continue to redefine "Work Ethic" means within my body's limits.
      I am learning a new vocabulary.  New roles.  New activities.  New balances.
     Volunteer.  Catholic.  Reflect. Write.  Blog.  Neither lazy nor cheat flows through my bloodstream.  Yet, Guilt persists--"intellectually" unjustified guilt--guilt that I personify the very stereotype I abhor.
     47% helped no one.  Not just as you might think.  47% as proclaimed by conservatives, and decried by liberals--helps no one.  Highlighting--not worshipping, but highlighting--how victim is not the essence of "The System's Face"--those who must knock at The System's Front Door-- is essential.  
     If the lazy, cheating, victim stereotype were in fact true, as some conservatives genuinely may believe, then, conservatives need to articulate how to live within inescapable boundaries imposed by the body.
 If conservatives believe that The System--the safety net it provides is not needed--then, talk about how to work within the limits of the body.
     Bleeding heart liberal though I may be, I do not hold liberals free of responsibility.  Liberals pound their chests with pride proclaiming the virtues of the Safety Net.  Hold your horses.
     Clear your throats.  Speak with clarity not with political banter volleying useless debate back into the court of conservatives who decry The System--the conservatives who decry The Safety Net.
     I am The System's Face.  Look at me.  Defense of your positions--volleying of the political football--does nothing to tell me, and you, how to live fully within the limits of my body--the limits of your body.
     I am The System's Face.  Look at me.  I have needs--undeniable needs.
    You are The System's Face.  Look at yourself.
    You are not immune from need--be it physical, economic, or social.  Though today may not be your day of need, such inevitable may come to be.  Do not hide from its possibility.
   The System's Face.  Do not Deface me.
   Conservatives dig deep into the Spiritual Wellspring from which you proclaim your value.
   Tell me.  If I am not to be suspended from an eternal fall by the Safety's Net, then, tell me.  How am I to live?  How are others, whose bodies are similarly compromised to live?  Don't speak of Survival of the Fittest.
    The System's Face.  Do not Deface me.
    Liberals.  Draw from your Thinker's Tank from which you Talk.
    Tell me.  Can you still your political bravado of The System--The Safety Net--in confrontation with conservatives who decry it?  Liberals.  Can you help me--help others--in the Safety Net--the System's Face to redefine how to live within the Safety's Net?
    Conservatives.  Liberals.  Can you tell me?
    Are you willing to work together to redefine the life--the fruit we may bear--in the Safety's Net?
    Conservatives.  Liberals.  Can you tell me?
     Are You willing to change the Pronouns by which you Think--the Pronouns by which you Speak?
     Liberals.  Conservatives.  Can you tell me?
     Will You speak not of They?  Will You work together to redefine the life--the fruit We may bear--in the Safety's Net?

My Subconscious View. Me. LTD. SSDI.

    Me.  Work Ethic.  LTD.  SSDI.  Me.
    Work ethic was instilled in me from childhood.  By example.  By parental instruction.  By familial heritage.  From 1960 til 2009, Work Ethic was held in high esteem--faithfully unquestioned.
     SSDI.  Before 2009, initials.  Social Security Disability Income.  A paragraph in a yearly Social Security Administration statement of credits earned.  SSDI.
     LTD.   Before 2009, initials.  Long-Term Disability.  A sensible work benefit offering.  An insurance policy.  A minuscule deduction--$2.72? per paycheck I presume.  A remote need that echoed it the possibility of my imagination--a need vague to my view, yet, haunting to my anxiety.  An anxiety inexpensive to appease, however remote it seemed.  LTD.
    SSDI.  LTD.  I knew no one within the limits of LTD--of SSDI.  LTD.  SSDI.
    LTD.  My knowledge of anyone on long-term disability was LTD to no one.  LTD.
    2009.
    A defining moment in my view of the world--in a view of myself.
    2009.
    SSDI.  I knew no one on SSDI.  Enlightened though I thought myself to be, I had far different images of who were receiving SSDI.  Some of those images haunt me yet today.  They do not describe who I am, yet, they define my sense of what I believe I must be in order to receive SSDI.
    SSDI.  Bedridden.  Paralyzed.  Confined to a wheelchair.  Totally dependent.  Unable to meet my activities of daily living independently.  Feeding.  Bathing.  Dressing.  SSDI.
    Bedridden.  Paralyzed.  Confined.  Incapable.  Unable.  Incontinent.  Dependent.
    2013.
    Four years have passed since 2009.
    2013.
    I am redefining what my life within the limits of my body is.  Volunteer.  Researcher.  Swimmer.  Friend.  Sister.  Cousin.  Aunt.  Daughter.  Writer.  Catholic activist.
    2013.
    Yet, four years later, the haunting drumbeat of my Subconscious View tower over me--the haunting drumbeat is deafening.  LTD.  SSDI.
    2009.
    Periodically--necessarily--surveyed, the haunting drumbeat is pounded into my spirit.  LTD.  SSDI.
    Surveyed--periodically--necessarily.  My personal questionnaire.
    2013.
    Do I fulfill my misconception--the haunting drumbeat?
    OR
    Am I moving forward to Redefine My Life within my Body's Limits.
    Me.  SSDI.  LTD.  The haunting drumbeat is deafening to my spirit.  LTD.  SSDI.  Me.

Victims. Entitlement.

"There are 47 percent of the people who will vote for the president no matter what. All right, there are 47 percent who are with him, who are dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it -- that that's an entitlement. And the government should give it to them. And they will vote for this president no matter what. ... These are people who pay no income tax. ... [M]y job is not to worry about those people. I'll never convince them they should take personal responsibility and care for their lives."
                                                                        Mitt Romney
     I do my best to steer clear of political commentary.  Excessive ranting, raving does grave injustice to the issues that demand our attention.
     But...
     I must speak out against Mitt Romney's broad strokes.  You see, some may say I am within the group of which he speaks--not completely, but, sufficient to respond.  I no longer work.  Although I do pay taxes.  I receive SSDI.  I am covered by Medicare.
     Some may say, "Don't take Mitt Romney's words personally."  I must.  The only way I know to live is personally.  If I do not live from my personal experience,  then, I have nothing to offer this world.
     Oxford Dictionaries defines "victim" as, "[noun] a person harmed, injured, or killed as a result of a crime, accident, or other event or action."
      If you define "cerebral palsy," as a result of the event of my birth, then, yes, I am a victim.  However, "victim", when spoken in common parlance, has a heavy burden of pity that exceeds its dictionary definition.  I do not include myself in that group.
    "Personal" is defined as, "adjective.  of, affecting, or belonging to a particular person rather than to anyone else."
    "Responsibility" is defined as, "the state or fact of having a duty to deal with something or of having control over someone."
     I do what is within my power to take responsibility to care for myself--for the impact of "cerebral palsy," "osteoarthritis," "epilepsy," and "intentional tremors."  I take medications twice daily.  I swim three to four hours a week.  I use a straw to drink--to counteract a tremor-laden hand.  I adjust the arrangement of my home to accommodate my physical capabilities.
    Dependent?  Yes, I am dependent.
    I don an ankle-foot-orthotic--a leg brace--daily.  I use an electric wheelchair when traveling long distances.  I submit to lab tests to evaluate the amounts of medications in my bloodstream.
    Dependent?  Yes, I am dependent.  Everyone is.
    But...that is not the whole story of who I am.
    I do give back.  To my family.  To my friends.  To my church.  To my community.  As I am able, I do give back.
    Research.  Writing.  Listening.  Advising.  Advocating.  Volunteering.
    Entitlement is defined as, "the fact of having a right to something."
    Entitlement.  Respect?  Yes.  Respect--basic, human respect.  That is the Entitlement that I offer each individual I meet and know.  That is the Entitlement I expect from others.

Living With the Cold, Hard Facts

     Zoomer.  A refrigerator--new, black, textured, cold.

     By passion, a researcher.  A children's museum my workplace--my playground.

     By birth, not a cradle Catholic.  By pursuit, reform's seeker.

     Since birth, cerebral palsy, epilepsy.  Since middle age, osteoarthritis.

     Lifelong, disability's advocate.

     In common?  This is my life.  Cold, hard facts.  Not always difficult, just cold, hard facts to be lived--to be lived fully.

     One year ago, a wheelchair was offered to my consideration.  I wanted nothing of it.

     "Think of your needs.  Not now.  Not a year from now.  Think of your needs five years from now."

     Still, I wanted nothing of it.  Yet, I slept on the offering.  I considered my life's cold, hard facts.

     I chose--I choose--to live with them, not die from them.

     Yesterday, a refrigerator was delivered.  New.  Black.  Textured.  To my liking.  To Zoomer's liking. 

     64 inches high.  My height?  64 inches.  28 inches wide.  My width?  Irrelevant.  32 inches deep.  My depth--my physical depth?  To the refrigerator's depth.

     Zoomer's reach?  The refrigerator's depth.  The freezer's height.

     Zoomer's range--range of motion?  Atop the freezer's height?  No.

     These are the dimensions of my life--the cold, hard facts.  But...these are the dimensions by which I am called to live--beyond the reach of the gifts I have been given.  

     I am an odd futurist.  Some say odd.  Others say futuristic.

     I do not know what my future will be.  None of us does.  Odd though it may seem, my new refrigerator opens a new view to the cold, hard facts by which I will be called to live.

     Covered with a texture new to me--it is fun to touch.  A new height to test.  A new depth to reach. 

     "Think of your needs.  Not now.  Not a year from now.  Think of your needs five years from now."

     I am an odd futurist.  I do not live by a clock's ticking.  My body breathes to her own rhythm--a mystery to me.  I try to live with her, not in fear of her.  Most days I abide by her.  Fewer days I succumb to them.

     I engage Zoomer to my new refrigerator.  With her, may I reach to the depths of the cold, hard facts by which I must live?  With her, may I reach beyond the gifts I have been to live? 

     I do not know what they will be.  I do not know their color.  Their height. 

     What will the texture of my spirit be to live by those cold, hard facts? 

     I pray I will abide by them, not succumb to them.

Calculation of an Ankle...Solving for X...

     Algebra was never my forte.  Yet, now I understand applied algebra, or I think I do.  Applied algebra, or is it Christian algebra.  You tell me.
     Walking from the bus to church--or at least to an intersection at which someone from church welcomes me into their car--is a very prayerful time.  Today came "the Calculation of an Ankle and a Hip--my Ankle, and My Hip."
     My memory has faded.  I do believe that algebra is adding several factors to solve for X.  The young Patty did not understand.  Humor this nearly 52-year-old woman, as she solves for X.
     Factors.
     Oxford Dictionaries defines factors as "expression by which another is exactly divisible."
     Variables.
     Oxford Dictionaries defines variable as "a quantity that during calculation is assumed to vary or be capable of varying."  I am not satisfied with any definition that uses another form of itself to define itself.  Vary is a verb, whereas variable is a noun.  Therefore, let us define the verb.  Vary is defined as, "differ in size, amount, degree, or nature from something else of the same general class."
     My eyes are starting to glaze over now.  Let me offer just one more definition to solve for X.
     Constants.  Oxford defines constants as, "noun.  a situation or state of affairs that does not change."  The example offered is ironic--truly ironic.  "the condition of struggle remained a constant."
     Definitions are established.  Let us proceed.
     A multitude of factors makes solving for X complex.  However, it is essential.
     X=Living inspired by, and insightful from, the lessons my ankle--my osteoarthritis--my cerebral palsy, and my epilepsy have taught, and continue to teach me.
    X=Sharing the inspirations, the insights my disabilities--my life conditions have given me; advocating for the full living of each of our individual life conditions.
     Constants.
     Brain damage.  Cerebral palsy.  Osteoarthritis.  Intentional tremors.  Epilepsy.      
     Factors.
     Inner calm.  Humor.  Optimism.  Keen listening.
     Variables.
     Humidity.  Distance traveled on my ankle.  Weight borne on my left hip, and my right ankle.  Do I listen to my body--to her instructions regarding my pace, and my activity?
     This morning I witnessed the baptisms of three babies.  The priest affirmed truth.  The babies are entering a world far more difficult than those of us, who are older.
   "There are no easy answers."
     The priest asked the community, whether we were willing to offer support to the parents in raising their newly baptized children.  His request was not hollow.  Clear was how much we are called to share the joys and the sorrows with other people we meet--other people with whom we are in communion.  I try not to feel discouragement.  Yet, our unwillingness to share both our joys and our sorrows, and our strengths, and our vulnerabilities is a sad commentary on our commitment to our lives.
     Why is it so hard to solve for X?  What are our joys?  What are our sorrows?   Are we inspired in our lives?  By what?  By whom?  Are we mindful of any insights in our day?  What are they?  Do we share them?
     Why is self-disclosure so difficult?  What is our purpose, if we are not to disclose our selves?
     Why is it so difficult to solve for  X?

Project Gutenberg

     Hi, my name is Patty.  I am a recovering proofreader.  I am a recovering publishing company employee.  I am a recovering librarian.
     Engaging in productive pursuits after exiting the paid work-world  is vital.  Not altruistic.  Essential.
     Volunteering.  Applying my gifts to the needs of other individuals, and organizations.  Essential.
     Today, I found mention of Project Gutenberg.
     Gutenberg?  Yes.  Gutenberg--Johannes Gutenberg--the inventor of the first printing press in 1440.  Project Gutenberg?  In 1971, Michael D. Hart was inspired to found Project Gutenberg.  The intent?  Digitize the printed word--digitize books.
     Publishers, librarians, and authors have grave concerns regarding this trend.  Lack of revenue.  Loss of the experience of holding a book.  The love of  turning the pages.  Preserving  the intellectual property of authors, who create the words we read, in whatever form those words may be.  My academic background is in library and information science.  For 24 years, I worked in a publishing company.  I have worked in a variety of libraries over thirty years.  I know authors.  I have known others.  I have deep respect for the craft of writing.  I dabble in the art of writing myself.  I revel in its celebration of words.
     Yet, I would like to offer a different perspective.
     The architecture of the Internet is a tremendous gem.  The electronic structure that we call the Internet was developed in the late 1960s.  The World Wide Web, on the other hand, was developed by Tim Berners-Lee, and his colleagues, in 1989.  The World Wide Web is a life line to many individuals.
     Most people can hop in a car, or walk to the nearest bookstore or library.  Yet, other individuals, for a variety of reasons, are not so capable.  Will is not the issue.  Unchangeable, unavoidable, life realities are the issues that rob--that can hijack--an individual's capability to roam the roads, or browse the open stacks.
     The Internet.  I support the foundation of the Internet.  The World Wide Web.  I surf the Information Superhighway.  Project Gutenberg.  I will explore that endeavor.
     Authors.  Librarians.  Publishers.  Amazon.com, Barnesandnoble.com--I will continue to support you.  Fear not.  I will continue to support you.
    Osteoarthritis.  Cerebral palsy.  Recovering proofreader.  Recovering proofreader.  Recovering librarian.  These simple realities lead me to an opportunity--proofreading printed works that are in the public domain.  Abetting a large digitizer of free e-books.  That is the crime to which I confess.
     May the debate over e-books be broadened to include those individuals, whose horizons may be expanded by access to information that well may be beyond their reach otherwise.
     Project Gutenberg.

A Fulfilling Living

     An amazing day.  An amazing week.
     January's ice box has moved into St. Paul today.  Yet, the sun shines.  Nary a cloud in the sky.  Cold hard facts.  I am warming to perfection.
     Monday's moments?
     Personal training.  New swimming equipment identified.  Noodles.  Paddles.  New exercises.  A stronger right hand perhaps?  Volunteering.  Research.  Pay dirt.  Struck gold.  Hit the jackpot.
     Tuesday's treasures?
     Catholic Church reform.  A new council.  The first of its kind.  Supporting researcher.  A witness to history that has yet to be made.  An invitation--a special invitation.  Do you want to share your story as part of a retreat on transition?  Amazing.
     Wednesday's wonders?
     Twenty-one Council members.  Twenty-one life stories.  Twenty-one crafters of a more democratic Catholic Church.  Wonder-filled.  Awe-inspiring.
     Thursday's triumph?  The noodle--the white noodle.  A hand clenched for a lifetime.  Through no fault of her own, my hand clenched tightly nonetheless.  Past efforts to open my clenched hand met with unwilling resistance from a stubborn soul.  There was just no possibility of an Open Hand--Outstretched Fingers, a Strong Wrist with a Firm Grip.
    An Open Hand.  Outstretching Fingers.  A Strengthening Wrist.  A Firming Grip.
    Amazing.  Wonder-filled.  Awe-inspiring.  Simple to some.  Amazing to me.

Advocating or Proselytizing

     Advocate.  Proselytize.  Convert.
     This week, proselytizing, and advocacy came to the fore.  When is proseltyzing appropriate?  When do we advocate?  How do we do so effectively?
     Proselyte.  Greek word, proselytus means "convert to (Judaism), stranger, one who has come over."  

     First, a proselyte appeared.  In the YMCA's (Young Men's Christian Association's) poolroom.  The intended audience?  My personal trainer.  I was not privy to their conversation.  My clues?  A Bible--a hand pointing to biblical passages.  The personal trainer, held captive to the
     What was I called to do?  What am I called to know before deciding to act?  From what past life experiences may I discern today's experience?  Several.

     Common to teenagers, I sought out a willing proselyte in junior high school.  Questions addressed, if not answered.  Bible study sessions.  Context.  My response?  A conversation with the pastor--Mark.  My creekside chidhood home would suggest a conversion blessed by water.  Such was my family's fear.  Have no fear.  Clear to me, this was not the time, this was not for me.  At the creek, with respect, I made clear, this was not my conversion's time--this was not my conversion's place.
     Open to beliefs diverse from my own,  I do call for a foundation.  Respect.  Patty's Prerequisite.  Respect.  Mutual respect.   
     Several years later, a similar seeking.  A far different result.  I was more mature.  My search was on solid ground.  A foundation was laid.  Respect.  My prerequisite met.  Mutual respect.
     The YMCA's poolside proseltyzing was unprovoked.  Yet, I was called to advocate for my own beliefs--my own needs. 
     Advocate.  Latin.  Ad- to, + vocaere, to call, related to  "vocem" (...voice.)

     How was I called to advocate--to advocate effectively?
     I was not privy to the words exchanged between the proseltye, and the personal trainer.  My only clue--a Bible--a hand pointing to biblical passages.
     My choices?  Two.  Proselytize?  No.  I had no reason to address the proselytizer.  She was not talking to me.  She was gone.   Advocacy?  Yes.  The trainer.
     Advocacy.  To call for what?  How?
     My feelings?  Anger.  Frustration.  Disappointment.  Determination.
     Convert.  Latin word, convertere, 'turn around, transform,' from com- 'together' and 'vertere "to turn."

    Open to beliefs diverse from my own,  I do call for a foundation.  Respect.  Patty's prerequisite.  Mutual respect.  Some may call my optimism--my positive nature--to be syrupy.  Yet, I prefer to think of it as an invitation to me, and to others to seek the best opportunity to transform something disappointing, bad, or whatever, into a positive situation.
    In terms of the proselytizer and my personal trainer, I have a positive outcome to share.  In the pool, I kicked my anger, and formed a constructive e-mail message stating my feelings, my intention to cancel our next session, and go back to my swimming routine.  Surprisingly, my direct approach caught the trainer's attention.  In a positive manner.  She understood how she could have handled the proselytizer differently.  She understood that I deserved her attention.  Barb expressed a desire to be more attentive.  We will meet again.

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?"

Mermaid Chronicles: Katy Lyons

     In the 1960s, a woman with graying brown hair wrapped in a bun, and horned-rim glasses came into my life.  Each week, Katy Lyons parked in our driveway, and carried a green and black exercise mat to our basement.  For an hour, she stretched my right leg.  Under the pot lights in the basement, she laid the groundwork for a stronger leg on which I could stand.  Katy flexed my right foot, and my right hand.

    With her firm hands, Katy gave me a gift.  A muscular yawn.  To my foot.  To my right hand.  A gift was given--a muscular yawn.  It felt so good.  The muscular yawn came slowly.  Yet, when it came,  oh, it feel so-o-o-o good.

     As any kid, I wanted little part of Mom's directive, "Do your exercises."  Memorable to me was the exercise to sit on the hearth in our living room, and propel myself up to a standing position using my right hand and arm.  Although the exercise felt good when I did it, I bored of it quickly.

     Where is my hearth? 

     This morning, this Mermaid entered the pool at the Y.  Buoyant bar bells, and hand paddles were beyond  temptations I could resist.  The only resistance I felt was from the water.  Amazing.  Absolutely amazing.  With the bar bells, I could push my right arm straight down in the water.  Feeling my right arm extended straight was amazing.  Absolutely amazing.

     Katy Lyons.

     I thought of Katy this morning.  What would she say?  How fun it would be to share it with Katy.  Yet, Katy died in the 1990s.  An occupational therapist I met with several years ago knew Katy.  The therapist and I spoke with warmth about a woman, who dedicated herself to children.  Katy dedicated her life to helping kids stand tall--to stand proud--to stand with appreciation.

     Thank you, Katy.

Where is the Middle???

     I find myself in the middle of a different search for information.  The search is new to me.  I am accustomed to the search for information regarding my epilepsy, and seizures most prominently.  Brain damage and cerebral palsy to  a lesser degree.  Although all four are intertwined.  My search is for how to be of compassionately informed support to someone, who is academically familiar with the medical condition he faces now as he looks in the mirror.
     With some, the temptation is to throw facts, and information--research--at them to help them contain their condition into a manageable form.  With others,, the temptation is to offer pity.  Sometimes, that is manifest in Poster Children to attract justifiable support for individuals with the condition, and for research.  On a personal level, pity well may be uncertainty, and discomfort, as to how to address the situation.  Most tempting, and most frightening to me is the offer to cure or to heal someone by mystical powers.
     Most helpful to me with regard to my seizures, epilepsy, cerebral palsy and brain damage is a balanced approach.
     I don't seek to be cured, or to have never had brain damage, cerebral palsy, epilepsy, and seizures.  I cannot roll back history.  Such is a waste of precious energy.  I prefer to seek insights--to how to live an insightful life--on the basis of my brain damage, cerebral palsy, epilepsy, and seizures.  To some degree, I have known that since eighth grade.
     I don't know how to be of help.  Facts, and information are readily available.  Pity is against my religion--pity that is closed to the possibility that more constructive responses are available.  Healing by means of mystical powers frightens me.
     I do make a distinction between healing by means of magical waving-of-a-wand means--full healing--and prayer.  The distinction is difficult to articulate.  Sometimes, the words may be the same, yet the tone is different--completely different.  I know it when I hear it--when I feel it.  I try to respond, so as to increase the likelihood of more compassion in the future.
    So, where does that leave the man facing a medical condition new to him personally?   We have known one another for a lifetime.  We respond similarly to much of what I have described--research, pity, cures, and healing by mystical powers.  I find it difficult to articulate the nuances in prayer that exist.
    I am leery of the support that consumer organizations can, and do provide.  I am not saying that they serve no useful purpose.  My concern is that the support--their expressed mission--is aimed more at publicizing research, and raising funds for the continuation for that research.  Both, essential.
    Where is the spiritual element of support?  Where is the spirituality of the human body in this discussion?  Often, the triangle, body, mind, and spirit," is discussed.  Of the three, most often, body and mind are linked.  Similarly, mind and spirit are linked.
    Yet, body and spirit seem miles apart.  I don't know precisely how to articulate it.  Maybe if I did--if we were willing to--articulate the relationship between the two, we might get beyond some ghost-in-a-white-sheet mentality of the body and the spirit.

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?

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.

Stolen Dignity

     WHY ARE THE KIDS TEASING ME?

     This is a question first asked in first grade.  The question remains with me today, not as a fixation on long-forgotten people, tangible pain, or specific places.  No,  the sting of “Why are the kids teasing me?” and specific words, phrases, or actions was removed many years ago by writing about the question, and the insights the question has given me.

     The factual basis of the question was my bent right arm, and wrist, and limping right leg.  My early understanding of the question was centered on the facts.  Yet, although I sought concrete facts from family, dissatisfaction with the answers given to me led me through a journey that I understood only in its necessity.

     My dissatisfaction was not my expression of doubt—doubt of love my family had for me.  I had, nor do I have any doubt.  They loved, and love me.  My dissatisfaction was threefold.   First, the logic of ignoring the teasing.  Second, saying that something was wrong with the bullies was no better than my feeling that something was wrong with me.  No one profited from that approach.  Finally, the cowardice of school administrators not to address specific names involving teasing that I reported is unconscionable to this day.

     “Why are the kids teasing me” was a question that offered me a nascent understanding of “stolen dignity.” 

      The understanding, response, and inaction regarding teasing was my invitation into a lifelong journey.

     “Stolen dignity” is not a word that appears in the Oxford Dictionary, http://oxforddictionaries.com/ .  It is a word that takes a lifetime to understand.  Yet, pursuit of its meaning is worthy of our earnest endeavors.

Comprehending “stolen dignity” must begin with “dignity.”  The Oxford Dictionary defines “dignity” http://oxforddictionaries.com/ as, the state or quality of being worthy of honour or respect:  the dignity of labour;  [count noun] a high rank or position:  he promised dignities to the nobles in return for his rival's murder.  2 a composed or serious manner or style:  he bowed with great dignity.  A sense of pride in oneself; self-respect:  it was beneath his dignity to shout.

     “Stolen” is defined by the Oxford Dictionary http://oxforddictionaries.com/  as an adjective.  The dictionary’s definition speaks of ideas, rather than people, although I think it is plausible to insert “individuals” in the place of “ideas.”  Oxford defined “stolen” as dishonestly pass off (another person‘s ideas) as one’s own.http://oxforddictionaries.com/.

     Dignity is not a human quality that is earned, nor is it possible without life experience.  Dignity is a gift.  Stolen dignity is an experience, which is not earned.   Similarly, it is not possible without life experience.  Yet, while dignity is a lifelong process, stolen dignity may be given in an instant—in a moment shorter than is possible to measure by any mechanism.

     Stolen dignity is not a condition that is outgrown.  Stolen dignity may be inflicted with a piercing knife any time from birth until death do us part.

     Stolen dignity is not an irreversible sentence.  Fervor is the requisite spirit, which must energize all efforts to extinguish the root causes of stolen dignity.  Fervor underlies ever word I write.

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?"

Don't Walk Too Fast...

Don't walk too fast.
I don't run.
I can't run.
The light is green.
The light says, "Walk."
Don't walk too fast.

Don't walk too fast.
The light is with me.
You are not.
Don't walk too fast.

Don't walk too fast.
I amble from strain--from pain.
I tiptoe toward not hurting.
Don't walk too fast.

Don't walk too fast.
Don't zoom past me on your motorcycle.
Don't rush to judgment.

Don't walk too fast.
Toughen my skin???
Understand that they do not???
I do.  Yet...
Don't walk too fast.

Don't walk too fast.
Yet...Understand???
Know???  They can.
Don't walk too fast.

Don't walk too fast.
Yet, understand???  At another time--in another world.
They will--they must.
Don't walk too fast.

Don't walk too fast.
Toughen my skin???
No.
Don't walk too fast.

Don't walk too fast.
Numb my heart???
No.
Don't walk too fast.

Don't walk too fast.
Toughen my skin?  Numb my heart?
No.  That is the price of my words--the price of my quest.
Don't walk too fast.