Stop. Listen. Negotiate. Compromise.

     I do my best to steer clear of political commentary on events of the day--events that everyone blogs about, screams about on television.  But.  I am disgusted.  I shall say my peace, sign any constructive petitions I become aware of.  Then, I shall return to the world where I am making a constructive contribution.  Catholic Church reform.  Donor research at a local museum.  Serving on a regional accessible transportation planning committee.  Proofreading print versions of braille books occasionally.
     Somehow, when I wasn't looking, my life became full, richer than I imagined possible.
     So, what engenders disgust in me?  Simple.  Congress.  The Tea Party.  The government shutdown.  The debt ceiling.
     Up until I was 40 to 45, I kept abreast of current events every day, and with great passion.
     Occasionally, I would write a letter to the editor, when I felt the issue warranted it.
     I am 53.  I have reached a point in my life, rightly or wrongly, that I want people to take responsibility for their actions.  Honestly, I am reaching the point where specific positions matter less to me than moral and ethical behavior by which every adult is called.
     Specific to Congress, and the decisions they are supposed to make, my cry is simple.
     "Whatever decision you make regarding the need for government services, I ask you to answer a question, "Do you believe that you are guaranteed that you will wake up tomorrow with the same capacities you have as you go to bed tonight?'"
     My immediate appeal regards personal health.  However, the more I think about it, the more I realize that my question goes deeper than that.
     "Do you believe that you are guaranteed that you will wake up tomorrow morning with the same economic resources that you have going to bed tonight."
     Initially, when I moderated my habits regarding news, I felt guilty.  I felt that I was not fulfilling my responsibilities as a citizen to be informed.  However, coverage of health care reform--the intensity and nature of the coverage--led me to seek refuge in calmer places.  I was faced with my own health challenges.      I could not handle the challenges presented by coverage of health care reform.
    My health challenges are manageable now--not gone, but, manageable.  Slowly I have developed a rich life in which I use my gifts, rather than taxing my body.
    To Congress--to individual decisionmakers who comprise Congress--I offer my comments.  The challenges before you well may be extremely difficult to address.  However, let me be quite clear.  Its nature as a difficult challenge does not serve as an excuse to delay or negate addressing the challenge.  As an individual, serious consequences would result from my failing to take the medication available to control my seizures, and tremors.
     To Congress--to individual decisionmakers who comprise Congress--I offer my comments.  Principles are good to have when serving in leadership positions.  Principles are the foundation of moral and ethical behavior.  But, principles cannot be substitutes for--obstacles to--engaging in negotiation.
None of us "gets our way" in this life.  Life is not perfect.
    Central to leadership are clear principles.  Listen.  Negotiate.  Listen.  Compromise.  Listen.
    Let me know when it is safe to come out from the rock--the refuge of peace--where I have put myself.

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?

At Arm's Length--Or--Take to Heart

     A fortuitous nightmare awakened me to the installation of Pope Francis I.  A moment before me--before my eyes--a moment before the eyes of the world.  The moment is now.
     Pope Francis I touched me--touched the world--with the Hand of Jesus.  He held a baby.  He went to a man unable to come to him.
     Some spoke of--whispered "the economic"--the Poor, the Weak, the Vulnerable--as others within view safely from an arm's length.
     Others speculate whether this is The Moment when administrative mismanagement within the Catholic Church will be cleaned up--whether church management will be made transparent.  Management in the Vatican.  Management in local dioceses.
     Still others ask whether this is The Moment when the Catholic Church will move into the twenty-first century.  Will the Catholic Church embrace married priesthood?  Women's ordination.  Same-sex marriage.
     I shall work--continue to work--with those dedicated to Church Transparency.  I shall work--I shall continue to work--with those dedicated to moving the Catholic Church in the twenty-first century.
     I like others are elated--surprisingly elated.  Yet, I pray of This Moment differently.
     I pray.
     May We embrace This Moment--This Franciscan Moment.
     May we embrace not just the economically--the socially--Poor--the physically Weak, and the Visibly Vulnerable.
     May we embrace our Inner Poverty, our Unifying Weakness, our Inescapable Vulnerability.
     May we not hide under the Guise of Heroism--the Cry of Pity--at those Stronger or Weaker than we see ourselves to be.
     Are you--are We--up to the task of embracing this Franciscan Moment?
      I pray.  May we open our arms to Pope Francis I--to this Franciscan Moment.

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?

Relax...A Time for Joy. A Time for Sorrow.

    The premise of  Patty's Ponderings is to reflect on the fast-paced, deadline-driven world in which we live.  My disclaimer?  I am no longer in the work world.  Sometimes, I feel guilty that I am not offering my nephews an example of a good work ethic.  Yet, as my mom says, going swimming--strengthening my right arm, and preserving my right ankle as much as is possible--is my job.  I do not mean that my swimming is drudgery, as the work world often seemed to me to be.  My swimming is challenging.  Yet, it is rewarding--very rewarding.
    But, I digress.
    This morning, I went to work.  Zoomer and I left to swim at the YMCA.  Fifteen minutes after leaving home, she and I arrived at the pool,.  During those 15 minutes, I encountered two people engaged in my pet peeve--engrossment in their electronic devices.  First, a man in his twenties stood at the end of a switchback--an accessible ramp--engrossed in a conversation with someone.  Later in our travels, Zoomer and I met up with an attractive, blond woman dressed in a gray business suit, and a fuchsia blouse.  The blond businesswoman's head was buried in some electronic device.  Zoomer is my silent business partner.  Thus, while the electric wheelchairs of some people make noise that alerts people to their presence, such is not the case for me.  The businesswoman was so engrossed in her electronic encumbrances that she did not see me coming.  I spoke up.  We parted ways.
     Such encounters lead me to wonder--to ponder.  What is so important that we miss in our surroundings--people, beauty, and all that life offers?  What do we miss because of the magnetism of electronic devices?  Complaints are made that no one has time to relax anymore.  I challenge the premise.
     No one has time to relax anymore?  No.  That is wrong.  They do--we all do.  It is a choice.
     I confess that I am addicted to my computer.  I communicate with individuals living on other continents.  But, as much time as I spend sitting at my computer, I am not its slave.  Though my contact with people is radically different from my working days, such is not all bad.  I make choices.  Essential to engaged living is circulating with people every day.  Circulating without tether of wires, ear plugs, or other such appendages.  Be it the grocery store. the Y, the Children's Museum, or wherever I find myself, full attentiveness to the people I encounter, meet, and know is vital.  May  I help them?  May they help me?  May we share our joy?  Or are we called to share our sorrow.  Joy is not happy.  Sorrow is not sad.  Happy and sad are nothing more than superficial ways of gasping for air.  Joy and sorrow call us to inhale...to exhale--to live fully.
    Take time.  Take the time.  Read Ecclesiastes 3:1-15.

A Mermaid's Tone

     Muscle tone.  Not of a body builder.  Muscle tone.  A Mermaid's Tone.
     I hope for it.  I will it to be.  I pray with fervor that it be--all mine.  Yet, hope, will, and prayer are not God's promise to me.  Yet, I must hope.  I must will it.  I must pray.
     Arms arise skyward.  Into the pool's water they plunge.  Alternating.  One, then the other, as oars in a river's current.  From my shoulders, this mermaid's oars are anchored.
     Arms outstretched.  Wrists pulled together.  With the force of a magnet, their cymbals clash.  With a strong will, her wrists resist the temptation of a lifelong embrace.  The force of her forearms cry out.
     "Strengthen me.  Use me.  Believe in me.  Do not waste my muscles.  Use me.  Do not will my muscles to be withering, dying willows.  Use me.  Teach me to reach outward--to branch out-- to blossom  in full glory."  
     The Mermaid's biceps believe.  Though not her eyes, the Mermaid's biceps believe in the vision--A Muscle's Tone.  With their tissues, the biceps connect the oars to the force of the forearms.
     The Mermaid's calves circle on the water's unicycle.  On her back, she floats.  The Mermaid's ankles pedal.  Her feet flutter.  The Mermaid's thighs push toward a toned spirit.  Not atrophy.  The Mermaid paddles toward a Muscle's Tone.
     I seek not the strength of the Bodybuilder.  I am the Mermaid.  I seek the strength of a Muscle's Tone.  No boorish bravado do I seek.  I seek a softer strength.  Not submissive.  Not boastful.
     I am a Mermaid.  I seek a Mermaid's Tone.

You Inspire Me

     "You inspire me."  
     I have heard that statement made in regard to me, and to other individuals.  I seek understanding.  No  longer am I the fierce person I was once.
     I am a lover of words--a lover of language.  I covet proper usage, or so some may say.  I live undeterred. 
     I wonder.  I ask the lover of words within me, "What are the roots of inspire?
     Cassell's Dictionary of Word Histories offers definitions vital to our contemplation.
     Inspire--a transitive verb meaning to stimulate a person to action, especially creative action.
    Transitive.  What does transitive mean?
     Action passing from a subject to an object; having a direct object.
     Verb.  What does verb mean?
      A word used to describe an action, state, or occurrence, and forming the main part of a sentence, such as ashear, become, happen.
     These definitions are basic, yet essential to our reflection.
     Definitions are the introduction to full understanding.  Definitions frame the questions requisite to full understanding.  Full use of inspire demands attention to four questions.      
     1. Do I live with integrity?
     2. Do I commit myself to be worthy of action inspired by the action of another human being?
     3. Am I willing to act upon the stimulation another individual offers me?
     4. Am I willing to be the direct object of another person's action?
     The definition of terms are basic, yet vital.
     Inspired action is not action for action's sake--obligatory action.  Given the choice between obligatory action and no action, no action is preferred.
     Inspired action is possible.

You are an Inspiration

     Many times, I have heard news features that say, "She is an inspiration."  
     I do not mean to denigrate good intentions.  I offer alternative intentions.
     Inspiration is a noun, which is derived from inspire.
     -ation is a suffix used to form abstract nouns from verbs.  It is sad.  To abstract the potency of inspire is sad.
      To say, "You are an inspiration to me," does not offer the hope that action will be taken.
      I accept the compliment.  I celebrate when I--when anyone--may stimulate anyone to leaven the gifts they have been invited to offer.
      I wonder.  What would the world be if each of us--if all of us--accepted the invitation to fully engage our gifts?

The Glass Doll

As the reed of the oboe cries out with music,

My heart yearns

To break the glass doll

Others have chosen to encase me in.

I am a strong being.

My strength is welled up deep within my soul.

I do not trumpet my strength

For the ears of others to hear me.

Such brassy notes are wasted,

When life demands of me an attentive ear.

My attention is focused on this day,

On the task before me at this moment.

My memory

Fortifies my resolve

To ensure my reputation

As a glass doll

Is shattered,

Now and forever.
                           Patty Thorsen, July 1993
                           First piece written reflecting on my disabilities

Listen. Pray. Speak. Act. Pray. Listen

My tears—my sadness—are God’s nudging me to arise.

Listen.  Pray.  Speak.  Act.  Pray.  Listen.

Long after your name—your face--is eclipsed by wonder-filled days,

Your words echo—reverberate—in the depths of my being.

The rhythm of your words inspires in me a constant drumbeat.

Listen.  Pray.  Speak.  Act.  Pray.  Listen.

What do I say?

When do I speak?

How do I voice my sadness to you?

Will you listen?

Will you hear me?

Listen.  Pray.  Speak.  Act.  Pray.  Listen.

Lend me your ear.

Give me a voice.

Give me a plan.

Grace me with faith.

Listen.  Pray.  Speak.  Act.  Pray.  Listen. 

You will listen.

You will hear.

You will change.

Listen.  Pray.  Speak.  Act.  Pray.  Listen.  

                                           September 4, 2007

     One day, a former coworker and I were working alone in the library.  With my back turned to him, my coworker must have seen someone who used a wheelchair.
     Without thinking anything of it, she said, "Oh, there goes another gimp."

     What?

     I was stunned--absolutely stunned.  I was rendered uncharacteristically speechless.  Never had anyone called me a gimp--never had I called myself "gimp."
     Writing has been the vehicle I have used to process my feelings--the deeper the hurt, the clearer the writing.  This piece was my attempt to process what happened, and what my feelings were.
     I do remember Janet.  She was not malicious per se--she was genuinely naive, and totally clueless.  Janet was a piece of work.  She is retired now.  I know nothing more of her life now.

     Ever since I was a little kid, I have believed that if I found the right words I could foster understanding.  I don't know if Janet ever understood--truly understood--the impact of her words.  The relationship that followed was based in nervous fear.  Janet was put on notice that if she ever so misspoke again, there would be consequences.

     It is ironic.  At the time that I wrote Listen. Pray.  Speak.  Act.  Pray.  Listen, my energies were focused on the word "gimp" and my inclusion in the word's definition.  I was walking with an ankle-foot-orthotic--a brace-- at the time, but, I was not in any way shape, or form, using a wheelchair.  Nor was I about to do so.

     Five years later, my circumstances are quite different.  No, I do not call myself a "gimp."  That has not changed. What has changed is that I use an electric wheelchair to live--to move long distances.  I don't know how I might have responded.  I guess the word "gimp" still would have been the main issue.  Yet, I wonder how would Janet and I have interacted.  I cannot mourn a lost friendship.  Close friendship far exceeded any physical differences.
     Although much has changed in five years, in all aspects of my life today, I continue to be committed to listen...pray....speak...act...pray...listen.

A Study in Words

     Many words come to mind as the debt ceiling debate.  Disgust.  Astonishment.  Frustration.  These are but a few of the words regarding how the debate is being conducted that come to my mind.
     I plead guilty to any accusation that I am obsessed with how words are used--how words are used in describing individuals, and interactions, most notably.  Words define the structure of a sentence--the foundation of a conversation.  The most important words are the subtle words--the words that are deemed acceptable.
     I have heard descriptions of this weekend's congressional proceedings.  I include both the House and the Senate in the term, "congress."  Sometimes, only the House is intended by speaking of "congressional."
     News reports have described actions in Congress this weekend as, "political theater."  Others have spoken with little fanfare of the "players" in the "game."  
     I cannot comprehend the economic figures being discussed.  I know what my political--governmental--spending priorities are, yet, my focus is elsewhere.  Some question what will happen if our nation's debt ceiling is not lifted.   As important as the answer to that question is, I am much more concerned about the words by which the debate is framed.
     Dumbfounded.  Whose life involves no compromise?  Whose life is ideal?  Do any of us choose the life circumstances we have been given to live?  Yes, we do have control--some control--over the quality of our lives. But, that is because we have chosen how we will live the circumstances we have been given to live.
     I don't like some of the compromises that my life circumstances have called me to make.  Yet, the alternative--not making any compromises--would be to paralyze me from living a meaningful life.  I am not willing to be so principled that I overlook the critical need for pragmatism.  Being willing to compromise--being pragmatic--is not a guarantee of getting the desired result--or the entirety of any desired result.  But, pragmatism, and compromise are unavoidable--necessary starting points.  Engaging in pragmatism, and compromise is the only hope I know of to preserve a high quality of living.
    At this point in time, we do not know the impact of the debt ceiling debate will be.  In my own life, the compromises I have been called to make to date have not been implemented for long enough to know of their impact on my life.  I do not know the specific compromises I will be called to make in the future.  The same is true of the U.S. Congress, and the President.  Yet, the price of not making compromises we are called to make is greater than making compromises, as a sign of being adults.

The Good Short Life

     Dudley Clendinen, a former New York Times national correspondent and editorial writer, chronicled his experience with amyotrophic lateral sclerosis.  Many call it ALS. Others Lou Gehrig's disease, in honor of a New York Yankee who died of the disease in 1938.
     Dudley offers a first-person perspective of Lou, as he calls it.  Reading his chronicle, it is clear, the it is really he.  Dudley's intimacy with Lou is worthy of our embrace.
    Some are choked up to read of the final curtain call, which befalls the individuals intimate with him.  Three people come to mind, known to me, who live with or have died at Lou's hands.  I would lie to exclude myself from being choked up about Lou.
     Yet, reading Dudley's commentary in today's New York Times calls me to reflect.  I am aware of life's realities.  Dudley says, "I sometimes call it Lou, in its honor, and because the familiar feels less threatening."  I understand.  Whether it be confronting a condition personally, or facing the condition in relations with other human beings, familiarity with--intimacy with--the condition is vital.
     I have lived with cerebral palsy since my first breath.  I have known no other intimate companion.  Epilepsy seizes me at times, when I abstain from my anticonvulsants' commands for me to take.  Yet, when I awaken from the seizing moments of my life, I am left to humor my cerebral palsy.  I must not abbreviate her presence in my life by calling her CP as a means of escaping the realities she presents to me daily.  I respect the abbreviation of--the calling of--her as CP by her other intimates.
   Yet,  I am challenged enough to maintain my own balance, without taking on responsibility of another individual, however similarly conditioned they may be.  Two years ago, chemical imbalances seized my clarity of thought.  While navigating my life through the clouds, I was informed of a stunning reality.  Cerebral palsy accelerates the aging process.
    My lifelong understanding was that cerebral palsy was not a degenerative condition.  Yet, accelerates the aging process was not synonymous with degenerative condition.  I confess, I am not faced with the prospect of being choked by my cerebral palsy.  Yet,  I do endeavor to understand the distinction between accelerate and degenerative.  
     Accelerate is derived from  accelerare "to hasten, to quicken," from ad- "to"  + celerare"hasten," from celer "swift."  Whereas, degenerative is derived from de + genus (gen. generis) "birth, descent."  Figurative sense of "to fall off, decline."
     During the nine days when my anticonvulsant imbalances were addressed, my understanding of degenerative in its figurative sense was accelerated at lightning speed.  As contrary as it may seem, striving to compete with the speed of others differently conditioned than I was no longer the point of my life.  It couldn't be.  The price to do so would have been too great--it would have driven me to my immediate demise.  If I strive to exceed the boundaries of who I am meant to be--who I will myself to co-operate with God to be--then I am avoiding what is available for me to live.
   As I say this, I recognize that this is far easier said than done.  I have yet to accomplish living what is within my boundaries to live.  For this reason, and to achieve this goal, I must return to two people's wisdom.  Let me be clear, I am not speaking of imminent death for myself, that is not my point.
    ...we don't talk about how to die.  We act as if facing death weren't one of life's greatest, most absorbing thrills and challenges.  Believe me, it is.  This is not dull.  But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative--not governing--to be free. 
     And that's the point.  This is not about one particular disease or even about Death.  It's about Life, when you know there's not much left.  That is the weird blessing of Lou.  There is no escape, and nothing much to do.   It's liberating.
     Reading Dudley's commentary, I am transported back to the words of my maternal grandfather--a mentor to me.  He lived with us during the last few years of his life.  While still quite lucid, he spoke words that guide my living yet today.
   "When I die, don't be sad.  I have made amends with everyone I have had differences with."
    Returning to Dudley Clendinen, "the familiar seems less threatening," is essential to how I must live--to how I may thrive.  On April 14, 2011, I took ownership of an Invacare FDX-MCG power wheelchair.  Yet, that was not the first step toward my liberating mobility.  Familiarity.  Less threatening.  These two qualities were essential to moving forward in my life.  Thus, Zoomer was born.  Zoomer moves me closer to other people, and other people closer to me.  Mechanical parts take a back seat to the persona of a more active way of living--not faster than other people, rather, different from others.
    I pray to be defined--guided--by blessing, making amends, familiar and less threatening.  May we be attuned to--listen to--the sages in our lives--in our world.

Boredom. Deny. Fear. Befriend. Boredom

     Boredom.  Boredom? Yes, boredom.  Well, that doesn't sound very interesting.  Humor me.  Tell me whether hours of sleeplessness regarding a family member was the breeding ground for worthwhile insight.
     I know three people who are at different stages of their careers, who are facing boredom's reality.
     Two years ago--a lifetime ago now--my health ended a 24-year career, which was boredom's intimate. Not a constant intimate, but, an intimate, nonetheless. 
     When my career ended, my family doctor gave me excellent advice.  Get up at the same time every day.  Find something that you are interested in, and go to it as though it was your full-time job.  Though my doctor had not known me long, he did know that I was reasonably intelligent--he knew that I thrived on  intellectual stimulation.
     Of the three individuals, my influence over them varies.  I am not a confrontational person.  My default behaviors are compassion, and empathy.  I am uncomfortable being over in relation to anyone in my life, so, by that standard, I do not have influence over anyone.  I might strive to be the compassionate, yet, straightforward friend a mentor of mine is.  He does not volunteer his opinions--his judgments--readily, or with any fanfare.  Yet, if I seek out his counsel, he is honest with me, not polite and proper, but, straightforward and caring.
     The young man needs the most guidance.  He yearns for excitement.  He goes one step beyond fearing boredom in potential jobs he might secure.  He denies that boredom is a possibility.  If he denies boredom's possibility, then it will not be.  I would make a lousy mother.  I am too wishy-washy.  I want to offer the example of my life, rather than risking the rejection that a more confrontational approach might render.
     The second individual--a woman--is in the middle of her working career.  She understands the realities of the work world.  She has worked in jobs that were boring--jobs that did a grave injustice to her gifts.  Yet, she understood the basic need to be self-supporting.  Or, so I thought.  Extended unemployment has nurtured an idealism that, at other times might be healthy.  Yet, there is a time in one's career--when seeking employment--when serving as an outraged citizen advocate usurps the energy necessary to find employment.  This woman fears boredom.  She remembers its omnipresence in her work life.  She has discovered social justice--advocacy--as a realm within her reach.  Yet, her fear of boredom has the opposite effect that she wants.  She wants to pursue advocacy.  Yet, her resistance to the necessary boredom in aspects of gainful employment will distance her from the social justice she yearns to pursue.  Her eroding self-confidence is the price she is paying for her fear.
     The third individual--a woman--is in the late stages of her working career.  She is boredom's intimate.  Not a constant intimate, but, an intimate nonetheless.  She does not fear boredom.  She does not deny boredom out of fear.  She befriends boredom.  She has a tremendous threshold for boredom that many overlook--she is not a woman of fanfare.  She has flair.  She has creativity.  But, she is not someone who draws attention to herself as being some poor soul.  She lives life fully.  She pursues her passions.  She treasures people.  She is a loyal friend, and is marvelous to her family. 
     Were I more courageous, I would shake the young man, and the first woman, so that I might rid them of their fear, and denial.  Of the second woman, I need little courage to offer my support.  Yet, I fall short.  I know that I am not faced with the work world.  No longer do I need to worry about finding a job, or changing a job.  During the many years I was in the work world, I denied boredom.  I feared boredom.  I befriended boredom.  Never did I surmount boredom as I want to chastise the young man, and two women for not surmounting.  So, I find it difficult to chastise the three individuals for a standard I could not uphold.
     No longer am I in the work world.  I am working in a different world--creating a post-work world life.  Funny.  You might think that being freed of imposed boredom would be replaced by days of constant excitement.  I don't know what that is.
   Gradually, I am trying to put together elements of what I enjoy, what is necessary, and what I may do to serve other people.
    What do I enjoy?  
    Writing.  Online research.  American history--New England, specifically.  Genealogy.  Letter writing.
    What is necessary?  
    Physical exercise.  Swimming.  Being outside.  People--being in circulation with other people.  Being in community with a worshipping community that celebrates life, death, and all that is possible with the same exuberance.
    What may I do to serve?
    Identify organizations needing the skills, abilities, talents, and gifts I have been given to share with those in need.  Challenge people I know to live up to their potential.  Offer my life--my discoveries--with friends, family, neighbors, and worshipping community--fellow believers.  Be open to the lives of my friends, family, neighbors, and worshipping community--fellow believers.
     This is the structure of a new life.  Much remains to be identified.  I don't think I am alone in striving to create this new life--to recognize boredom, acknowledge denial, confess to fear, and befriend boredom, all in the hope of surmounting boredom.  I confess I have a long way to go.  I have forgotten what it is I want to do.  I am not sure if that it is denial, fear, or both.
     Boredom.  Deny.  Fear.  Befriend.  Boredom.

A Declarative Act of Living...A Defiant Part of Speech

     Make today a declarative act of living, not a defiant part of speech.
     These words were given to me on April 14, 2011, when I took ownership of a red Invacare FDX-MCG.  After hours of labor that enabled me to have a power wheelchair, I struggled.  I did not want to be victim of--a victim to--FDX-MCG.
     I am a woman of words.  I need clarity as my advocate.  FDX-MCG hardly fits the bill.
     Make today a declarative act of living.
     A declarative act is an expression of faith--a belief of what can be, if I will it.  Faith begins in prayer. I pray.  I believe it may be.  I will it. If it be, I pray.
     Do not be mistaken.  A declarative act of living is not a guarantee of a life as I want it to be.     
     Will.
     Will the faculty of conscious and especially of deliberate action.  Will is quite different from defiance.
     Not a defiant part of speech.
     Defy.  Defiant.  Defiance.
     Defy--to challenge the power of; resist boldly or openly; to challenge (a person) to do something deemed impossible.
    Defiant--boldly resistant or challenging.
    Defiance--a challenge to meet in combat or in a contest.
    Most of my life--before knowing how to do otherwise, and long after I was old enough to know better--I have lived in defiance.  I defied expectations of surgeons, "she may never walk or talk," the expectations of educators, "if I were to guess, I would say she might be mentally retarded," and occupational therapists, "here are exercises to help you to learn to use your right hand."
    As my Dad has said, "We didn't if you would learn to talk, but, once you started to talk, we didn't know if you would stop talking."  Though never a stellar student in graded terms, I did graduate from college, then, I completed graduate school.  There need be no apology for my life's story.  Only if I do not share it must I apologize.  Only if I share it will I ever learn.
      Long before graduate school--long before learning to speak--I defied the best-intentioned expectations of occupational therapists.  Carefully planned exercises--customized to my needs--were blown to smithereens.  Honestly, it was so long ago--I do not know if I could know, if I could remember.  How did I perform the assigned tasks with just one, and not two hands.  My intent was not defiant.  My act was.
   Throughout my life, if driven by nothing else, I am driven to excel-lence by, "I don't think you can do that."  "Do you want to make a bet."  Yet, such defiance comes at a heavy price.  I lived an act of defiance.  My body crumbled under its load.
     Far better than any dose of defiance is a measure of will. 
     I do not know the precise content of my acts--of my living.  I do know that I can not live under the destruction defiance delivers to my soul.  
     Make today a declarative act of living, not a defiant part of speech.

Zoomer Chronicles: Global Maps and Positions

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

Getting It Right

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

What Do You Want To Be When You Grow Up???

     Last night, a friend reminded me of the ever-present quest for a perfect job--a perfect life--abundant in fulfillment, and accomplishment, and free of frustration.  Oh, and could you give me meaningful days free of boredom, and monotony.
     To some degree, I live a life of luxury. Well...I could eat bon bons, if I wanted.  I have the time.  But, truth be told, that is not the life I want to live.  I do not have the responsibilities of a full-time, or a part-time employee, for that matter.  So, it is easy for me to make pronouncements about a perfect job---a perfect life.
     My struggle with finding the perfect job were put to an end with the failure of my body.  My mind-filled wish for the perfect job was no matter for my consideration.
     A perfect life???
     Hmmmm....I am still working on that one.
     Any delusion of keen listening--of being able to offer constructive suggestions solely by virtue of listening with a keen ear--were dispelled, when my conversation with my friend ended.
     What are my job responsibilities today?
I have tended to apologize for my current life, as compared to when I was employed by a large corporation.  I am not providing any quantifiable product or service to my "customers," in the lingo of corporate America.  So, what contribution am I offering?
     What are my job responsibilities today?  Who are my customers? What contributions am I offering. 
     Tending to the needs of my body.  Exercising it to make sure that I take the actions within my power to preserve this vessel I was given 51 years ago in the best condition possible.  I cannot take on responsibilities beyond my real or intended capacities.
     For many years, I have had a mutual understanding--offering--with a different friend.  Both of us serve one another as ceiling therapists.  This service is not daily, per se.  As a ceiling therapist, I have agreed to lend an ear, when the need arises.  My friend and I have committed a willingness to be available to do nothing more than listen, while my friend gets off her chest whatever problems, or situations are out of control.  As a ceiling therapist, I agree to pull my friend off of the ceiling after such overwhelming problems, or situations occur.
    At other times, I have served as a control panel specialist, when the need arises.  What? A control panel specialist.  I provide my friend with basic understanding of how to make the computer, most oftentimes the basic software applications sing as they are designed to sing.  Once again, my service as a control panel specialist is provided on an on-call, as needed, basis.
     I feel I am falling short of another job I have undertaken--a prison correspondent.
     I set high expectations.  I fail to give myself credit for what I am doing.  The same is true for volunteering that I am doing.  Yet, with my volunteering, I know that the sheer contact with people is tremendous.  That is the part of my job commitment to myself.
     So, does any of that contain a pearl of wisdom that I could have offered my friend last night?  I do not intend to present myself as some sage--some sole source of wisdom to my friend.  I knew most of what I expressed here last night.
     Yet, as much as I value words, I could not find the words to convey an oftentimes unattractive truth:  Life isn't perfect.  I couldn't bring myself to say, "The party's what you make it," as a travel acquaintance once said.  Both truths seemed to trivialize the desire of my friend to create for herself a life of service--grand service.
     For many years, I resisted sage advice my mother offered over and over and over.  "Focus on the positive, and ignore the negative."  I resisted her advice.  Though the first part, "Focus on the positive," made complete sense to me, I could not reconcile, "ignore the negative."  The "negative" that I was fighting was hurtful reality hurled at me repeatedly.
     It took me many years to understand a difficult, yet extremely valuable truth that I try to live by today.    
     Each problem--each situation--whatever it may be, has some lesson that it offers me to learn from.
     I have a choice.  Do I want to attend to the lesson--seek answers--or do I want to wallow in life's imperfections?
    My choice may be warped by the many years I have been in formal classrooms, be they pre-school, special education, the regular classroom, college, or graduate school.  Yet, again and again, I come back to my choice--I must attend to the lessons.  I must seek answers.
     Yet, who among us live lives of grand service--or grandiose service?
      Do we lose track of the gifts we have been given to offer, when we try to pursue grandiose service?
      Do we lose track of what good there may be in grandiose service, when we try to create it for ourselves?
      I don't know the answers.  Yet, I commit to seek the answers as a friend, as a daughter, as an aunt, as a sister, as a neighbhor, and as a seeker of truth, who has been blessed with an amazing worship community.

Personal Disclosure

Praying as Self-discovery 
 Prayer is not, first and foremost, saying prayers. It is opening the most intimate part of ourselves to God. It is discovering that in the deepest part of our body and our being there is a source, and that source is God. God is the power that unites the universe and gives everything meaning.

- Jean Vanier, Our Journey Home, p. 215   

   Personal disclosure.  Several instances this week have brought personal disclosure to mind.  Most recently, learning about a new search engine—Blekko—that I wanted to try.  I am a research geek mind you.  Logging on to Blekko called for me to reveal information about me, my life, and my values.  I am not embarrassed about myself, my life, or my values.  It has taken me many years to arrive at that point.  Personal disclosure is the price to be paid for learning, and exploring.

   Personal disclosure.  Facebook.  This week, a number of friends, family members, and organizations made me aware of the degree to which I am comfortable in sharing about myself with other people.   Looking at the Facebook pages of friends, and younger relatives, who are at varying degrees of involvement with Facebook reveal what my boundaries are.  Some question the privacy concerns of being involved on Facebook.  My view is that it is not the medium, but, how I or others use it that establish its value in my life.  

     Personal disclosure.  My threshold for personal disclosure are being tested currently.  How?  PrisonTalk would allow me to gain insight I need to understand prison life, so that I may be more supportive.  I am drawn to PrisonTalk by the opportunities to learn about and gain insight into prison life.  Trust is clashing with personal disclosure.  I find personal disclosure regarding my own life, and values to be fairly easy.  Yet, I do not want to make disclosures about someone else in hopes of gaining the information I am seeking that would endanger them in any way.

  Personal disclosure.  Delusions I had that I was very comfortable with what other people think of me--of my capabilities--were shattered to smithereens.  I began volunteering.  Good grief.  I am working with delightful people.  I know how to do what they want, at least the essence of what they want.  Yet, my nervousness--my personal need to be impressive on the first day made for a disaster, from my eyes, not from other people's judgments of me.  I think I have purged myself of the nervousness, so I am hoping that I will be able to go in on Friday to offer help....

     [Friday evening] I succeeded.  Fears of having lost my capacities to work in the work world again were for naught--the fear of revealing my human imperfection.

    Personal disclosure.  In conversations we have had about sympathy versus empathy, Mom said that we could never understand what another person experiences.  To some degree that is true.  Yet, I believe understanding another person's experiences--truly understanding someone else's experiences is possible, if we are willing to invest our experiences in communion with other individuals.

    Personal disclosure.  I consider myself to have principles.  Or, I have considered myself to be a woman of principles.  Yet, Jean Vanier, Blekko, Facebook, and PrisonTalk challenge my principles.  Jean Vanier leads me to question whether I want to be a woman of principle, or am I willing to be a woman of personal disclosure.

A Decibelic, Hyperbolic Fast

     Lent in the Catholic Church is a time of fasting.  Food.  The only form of fasting seems to be food.  With tremendous guilt, I have resisted the admonition to fast.  I felt that to fast for a short period of time with the full knowledge that returning to the old ways defeated the purpose.  My understanding of fasting was to commit to a different long-term behavior that would contribute to living with greater commitment--with greater integrity.
     Yet, I have been offered more palatable forms of fasting to which I may be committed--to which I may will it so.  The U.S. budget debate is one offering of the inspiration to be differently committed.  My objective is to find reasonable, and logical options to participate in the debate.  I do not mean in the form of legislative proposals, or policies.  That is not where my life is centered, such that I could offer any worthy contribution.  As a child, I thought that listening to television news on a religious basis was the solution to be informed, if not directly involved.  When I left the work world, I committed myself to listening to television news as I distracted myself from personal issues beyond my control.
     As the decibel level of debate increases, fasting needs redefinition in my life.  Television news is comfortable white noise.  It does provide a marvelous front row seat to history--to Tahrir Square, most notably.  Condemning all of television news is just as bad as watching news comprised solely of hyperbole, and vitriol.
     Fasting, in my life, will be a commitment to avoid mindless listening to the vitriolic news I identify.  Fasting is a commitment to silence--to intimacy with her.  Fasting is a commitment to music to cleanse my mind of the noise around me--to direct my mind toward more constructive ideas, and perspectives that I may offer.

Words of War....The Silence of Peace

     The implementation of the Libyan no-fly zone--Operation Odyssey Dawn--amplifies the words we use to dictate how we conduct human affairs.
     I must confess.  Two statements uttered during each Catholic Mass move me.
     Peace be with you.  May the peace of Christ be with you.
     Words of war.  Perplexing phrases.
     What is the end game? 
     We can win this war.
     We cannot lose the war.
      The U.N. seeks a coalition of willing partners to implement the no-fly zone against Libya.  Diplomatic affairs are crafted by the Department of State, the United Nations, primarily in the United States.  We have progressed from the United States Department of War. From 1798 through 1947, the United States governed its foreign affairs through a Department of State.

      Movements to establish a Department of Peace in the United States has never gotten any traction.  A Department of Peace has never been taken seriously.
     Is it too little, too late?  
     This question is being asked regarding the implementation of military actions in Libya.
     I pose a different question.
     Peace.  Is it ever too little, too late?