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?

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.

A Shared Ride into the Unknown.

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

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

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

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

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

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?

Medicare

     Medicare.  White-haired senior citizens.  Medicare.  65-year-olds.  Medicare.  Part A.  Medicare.  Part B.  Medicare.  Part C.  Medicare Part D.  Medicare.  Medigap.  Medicare. Open Enrollment.  Medicare.  Fraud.  Medicare.
     Each of these are aspects of Medicare.  Yet, Medicare--the word, "Medicare"--evokes emotions as inflamed as arthritic joints.  I cannot--I will not--inflame the word further by engaging in the political debates surrounding the federal program.
     I find myself at a peculiar crossroads.  Had you told me five years ago that I would be selecting which Medicare Parts B, C, and D options to select, I would not have believed you.
     An envelope from the Social Security Administration arrived this week.  My question, "Do I need to initiate contact regarding Medicare?" was answered.  No.  As I hoped, I could read the wealth of information given to me, sign onto a helpful website, www.Medicare.gov, and create an account.  My guard against anxiety, and obsession is a playful detachment.
   I love crossword puzzles.  I love the World Wide Web--navigating the structure of its information, the internet.
   With playful discovery, I found a database into which I may search for my doctors, hospitals, pharmacies.  Nursing homes?  No, I am far from ready for that move.
    It is ironic.  I tell one of my nephews to join the world of adult responsibility.  Yet, I tell myself not to get too obsessed regarding the eventualities with which the plan options confront me.
    One of the options I will not select is Plan H--Political Hyperbole--which plays on the emotions of senior citizens, and others eligible to receive Medicare.  I will steer clear of candidates, who use a condescending tone in their discussions of Medicare.  I will steer clear of Victims' Volley--a game too often played by politicians, in which recipients of Medicare become political footballs.
     Do you think Medicare will judge ear plugs I buy as medically necessary?

Epilepsy Chronicles: Ignorance. Understanding. Transformation.

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

Zoomer Chronicles: Ramps...Buttons...Doors...

     One of the most liberating aspects of Zoomer is her capacity to go from my condominium to the YMCA's pool.  Four days a week, I start my morning by riding with Zoomer to the pool.
     Four mornings a week, I honor my right ankle.  After long discussions, and many arguments, my osteoarthritis and my right ankle won out.  No longer did she have the strength to stand by me each day.  After the dust settled, it was clear.  I needed an electric wheelchair.  I needed regular exercise to loosen osteoarthritis' hold on me--her inflamed ego.
     I swim one day a week for each month that I spent working to secure Zoomer.  I swim one hour a day to be of one mind.  I will not be fierce, and argumentative, yet, neither will I roll over and play dead.
      With Zoomer, I traveled to the YMCA.   I gave myself a birthday present.  I am known by name.  Jen, Jeannie, and Matt.  On guard, Lucy, and Collin, among others.  A fellow swimmer greeted me, "Hi, Mermaid."
      Elevated walkways--skyways--enable Zoomer and me to travel to the YMCA whatever the outside weather may be--snow, ice, wind, windchill.  During St. Paul's precious springtime, and summer, Zoomer cries to be outside.  That seemed a reasonable request.
       Ramps are common companions to stairs.  Just as stairs lead to doors--to open doors--so too should we expect of ramps to be.   On one summertime St. Paul day, I succumb to Zoomer's cries.  I pressed the door opener button, and readied myself to guide Zoomer down the ramp.
       Well...I must digress.  Minnesota does not have four seasons--it has two.  Winter, and road construction.  Particularly, a multiyear project to construct a light-rail transit system that will pass through downtown St. Paul.
      Having detoured, let me return to our journey.  Zoomer's cry, "Outside...outside....let me out...let me out..."  So, I pressed the door opener button.  So far, so good.  I positioned myself to go through the door without injury--without a nick, or crash.  Feat accomplished.  It was downhill from there on out.  Or, so I thought.  A orange-and-white striped sign made clear that I had met my match.  We needed to backtrack.  Zoomer and I needed to find another pathway.  Logic told us to turn around to go back inside the building, and traverse the skyways.  But, that was not to be.  We found no automatic door opener button on the outside door leading into the building.  Who would lead someone, raise someone's expectations of entering the building without ascending insurmountable steps?  I have yet to meet the person.
      With my first option a failure, we turned around again.  The hours of swimming--the strengthening of my left upper arm--proved quite helpful.  I re-examined the orange-and-white striped sign.  Fortunately, yellow sandbags secured the sign from a winds' power.  So, I exercised my muscle to lift the sandbag, ever so slightly, such that I could bypass the sign.
      The hijacker and I are in negotiations as to how to assert my needs without losing my inner calm.  Zoomer is grateful for my arm's strength.  I am too.

Spirituality of the Human Body

     Respect.  Body Parts.
     What on earth do these two phrases have in common?  Contrary to what you may think, a great deal.
     But, before I go further, let me establish what I will not be addressing.  First,  respect--respect for life--in its common parlance is beyond my call--abortion.  I have my views.  I respect those of other individuals with differing views than mine.  I am open to expressing, and exchanging those perspectives.  Yet, my call is to convey my thoughts in a different direction.
    Respect for life--respect for the life I have been given to live.  That is my call.  That is what I pray I will voice today.  Yet, that is a broad, unwieldy scope to address.
    Body parts.  Body parts? Yes, body parts.  How is that remotely connected to respect for the life I have been given to live?
     Once again, let me establish what I will not address--what I do not mean.  I do not drive.  I have no knowledge of auto mechanics--I have no knowledge of automobile body parts.  That is not my call.  I am called to a different direction.  I am called to convey my thoughts regarding human body parts.
     Private parts.  Betrayal.  Disability.
     I am not writing about private parts, per se.  The term is understood--there is an established definition of the term.  I do want to include the term in the context of our human body parts.  I have never heard reference to, much less definition of what might be called public parts--public human body parts.
    We have no understanding of how our bodies serve the rest of us--our mind, and spirit.  We do not attend ourselves to how we honor our body parts.  How do we serve our body parts?
     In recent years, I have been called to respond to these questions.  Until recent years, my right hand did little to serve me.  Never have I had, or will I have fine motor skills in my right hand.  Never have I known any other way to live, so that has required little adjustment of me.
    My right ankle, and my left hand are another matter entirely.  Osteoarthritis in my right ankle caused me to ask--how does my ankle serve me?  It took many months for me to reconcile the fact that my right ankle could not serve me.
    My left hand has been my lifelong workhorse.  She has been called to make up for the many times when my right hand could be of no service to me.  I am scared by little.  Yet, the onset of what I now know to be intentional tremors in my left hand rendered me speechless--a feat for anyone who knows me.  Intentional tremors.  The more I intend to do a given task when I am nervous, the shakier my left hand becomes.
    Intentional tremors made essential the honoring of my body parts, and their service to me.  I took for granted that my left hand would be at my service, at full strength, throughout my life to meet whatever need I had.  Intentional tremors called my right arm and hand to service, as a steadying force.
     Intentional tremors were the sign of the first part of spirituality of the body--spirituality of my body.  I had to identify--I had to come to terms with--what my body parts could do.  How could my body parts serve me?  That was the first step.
    Honoring my body parts.  What does that mean?  What does it call me to do?
    When I honor my body parts, I must humble myself.  I must confess, "What is it that my body part can no longer do?  Honoring my body parts, committing myself to confession is not the end.  It is the second of a three-step process that continues throughout our lives as we age.
     We argue about terms regarding people whose bodies do not function as most people's bodies do.  Yet, we have not elevated our understanding to a betrayal of our human body parts to our minds, and  spirituality of the human body--the spirituality of our human body.  The closest example of spirituality of the human body may be found in the writing of theologian Jean Vanier.  If you have never read his writings, I commend him to you.
      But, the writing of Jean Vanier does not go far enough.  Or, how we read Jean Vanier does not  challenge us to examine our own bodies as worthy of having spirituality appended to it.  We can separate his comments and compartmentalize them as applying to the residents of L'Arche, and no one else.  Whenever we receive communion, we speak of the Body of Christ.  Yet, we do not bring our human body to communion with us.
    Clinical inventory of our body parts.  Physicals, medical tests, and other medical examinations require of us little more than to go skin deep.  That is, in and of themselves.  Yet, if we are wholly attuned to our human body parts, we are called to go much deeper--far deeper than skin deep.
    Glorification of the body.  Glorification of the body may be found in two different places--in the media, and in fine art.  Glorification of the body may have positive or negative impacts in the media or in fine art.  Both need our attention--our open-mindedness.
    Spirituality of the human body...spirituality of the human being.
    How can we ascend to--advance to--a spirituality of our body parts--a spirituality of our human body-- if we separate our human body as we enter the door of the church, or if we separate the whole notion of spirituality when we open the door to leave the church?
     Can we read Julian of Norwich and choose to engage in some form of spirituality regarding our human body?  If we accept the invitation Julian of Norwich offers us, can we develop a spirituality of our human being?  I am not saying that it is necessary to go as extreme as Julian did.  That is not the point. .Yet, are we willing to go further than we have  gone up until now?  I continue to press the issue, because I believe it is possible--it is essential.
    Respect. Respect for life.  Respect for the life I have been given to live. How does my body serve me?  How may I honor my body?  How may I serve my body, so as to preserve and honor her gift--her gifts?  Am I willing to commit myself to pursuing a spirituality of my human body--a spirituality of my human being?

Indoor/Outdoor Living

     Contrary to years gone by, I have no desire--absolutely none--to be inside.  Mind you, I seek no suntan.  I am too fair of face to have that aspiration.  I am born of Norwegian stalk.  Need I say more?  No.  I have lived from the inside looking out.  Now, I yearn to live beyond the window's shade--beyond the door's lock.  I have the wheels.   I have the time.
    Am I nothing more than a fair weather friend of nature?  I am a Minnesotan.  Need I say more?
    No, seriously.  Were I told, "You may have but one view of the world around you, the rest will be blinded to you," what would I choose.  Oh, that is easy.  I have no doubt.  A sugar maple in her full autumn glory--in fiery red.  A sugar maple in fiery red beneath a clear blue sky.  A sugar maple in her full autumn glory standing her ground on a brisk September day.  That would be my single landscape were I limited to one.
     Am I nothing more than a fair weather friend of nature?  I am a Minnesotan.  Need I say more?
     No, seriously.  Wintertime.  My heart melts at the sight of big snowflakes lacing tree branches.
     Am I nothing more than a fair weather friend of nature?  I am a Minnesotan.  Need I say more?
     No, seriously. Springtime.  Born an April's Fool,  the smell of fresh lilac.  Ah, the smell of fresh lilac.  A child born in Golden Valley nary a mile from Lilac Drive.  Hedges of lilacs breeze through my lifetime's senses.
     Wintertime ice. I slip. Wintertime snow drifts.  I fall.  Cold I may dress for.  Yet, ice and snow drifts steal my balance--inner and outer.  Ice and snow drifts steal my balance. From ice and snow--from Cabin Fever I ail.
     Am I nothing more than a fair weather friend of nature?  I am a Minnesotan.  Need I say more?
     Minnesota.  Wait five minutes, the weather will change.  A sugar maple in her full autumn glory--fiery red.  Giant snowflakes lacing tree branches.  Green pine trees laden with a fresh white coat.  Fresh lilac breezing through my lifetime's senses. 68 degrees.  No humidity.  No mosquitoes. Humidity.  Rain showers.  The 90s.  Green skies.  Thunder.  Lightning.  Tornadoes.
     Am I nothing more than a fair weather's friend?  I am a Minnesotan.  Need I say more?

Zoomer Chronicles: Adventure's Name

     Zoomer v. Invacare, FDX-MCG, Front-Wheel Drive, Center of Gravity.
     Many individuals with scooters, electric wheelchairs, and the like adorn their vehicles with American flags, safety flags, and the like.  I have not motorized the American flag, although I seek the power of protection a bright orange safety flag is promoted as affording me.
     Some people are branded as Jazzy.  I have not been so bestowed.  Were I branded, I would be known as FDX-MCG, or front-wheel drive, center of gravity.  While the balance center of gravity promises, and the power front-wheel drive promises, FDX-MCG or center of gravity is hardly intuitive, much less catchy.
    Wheelchair-bound, or wheelchair-confined is hardly the way I pray that I will proceed through my life.
     If it be so, that is how I will go.  Yet, for now, I vow to take a different road--the less traveled road--toward adventure.
     Adventure--lived fully--must flow from A to Z.  If I am so to travel the road of Adventure, my companion must be Zoomer.
     I hate to be a woman of delusion.  Saying I use an electric wheelchair still stings a bit.  Say it if I must, I will do.  Yet, somehow, Zoomer removes the stinger, and allows me adventure and does bind or confine me to a wheelchair, even if it be mine.  Zoomer is a power-filled princess, while Front-wheel Drive, Center of Gravity is a frightening dictator.
     For now, Zoomer and I shall travel down the road less traveled toward whatever unknown adventure awaits.  We shall travel together, yet, still not alone.  In the spirit of three--Robert Frost, John Hockenberry, and John Steinbeck we shall travel.  Travels with Charley:  In Search of America I must read.

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.

Zoomer Chronicles: An Anniversary

     On April 14, 2011, my life changed dramatically.  One year of denial and resistance to my needs.  One year  of fear, "People are going to be condescending toward me."  Finally, my resistance gave way in the face of debilitating ankle weakness--complete lack of stamina.
     Two months ago, that changed.  Invacare FDX-MCG is hardly captivating, or intuitive.  Yes, FDX means "front-wheel drive," and "MCG" means "center of gravity."   Front-wheel drive gives me the traction I need to navigate in wet conditions, although we should not be out in heavy rain.
     Zoomer has transformed my electric wheelchair fears into personal liberation.  
     Never have I been an outdoors person.  I am not athletic.  Childhood neighbors' GREAT DANES instilled in me paralyzing fears of animals.  They were far taller than I was.  I wanted no part of being trampled by these GIANTS.  So, little has tantalized any outdoor desires I might have had.
     Then....then, an interminably long Minnesota winter, the magnitude of snow not seen since the late 1960s, germinated in me not just a desire, but a yearning to be outside--to stay outside--to live beyond health's necessary confines dictated by a weak ankle.  Opportunity presented itself from an unlikely place to open the doors--exceed the confines of my necessary confines--an insurance company advocate knowledgeable of available vehicles of freedom.  She guided me through the winding roads of the adoption process.  Truly amazing.
     Fast forward to April 14, 2011.  Four months of labor gave birth to Invacare FDX-MCG--Zoomer.
     Never a mother, never a driver, this large infant--an elephant in my room--was frightening.  Unbelievable to many, my long confinement extinguished knowledge of where do I want to go?  Fundamental survival instincts were beyond my comprehension.
     Door jambs, narrow hallways, doors, handicap-accessible doors, and elevators were among the infant steps to be taken at a snail's pace on level 2 of the four levels of the wheelchair available to me.  Interminable--painful--sounds of Zoomer's dancing wheels did not help my confidence.  Yet, that yearning for freedom overrode my fears.  Slowly, the knowledge that the nicks never dented my body--never injured anyone else--or Zoomer's seemingly indestructible body accelerated my confidence.
     I have never been a risk taker, or so I think.  I have been fiesty--one who tried to push the envelope of others' expectations--yet, never a risk taker.  I have never been a risk taker--never a gambler.  Yet, now placed on the table before me is a necessary risk--a gamble I must take.  I am not a person of stupid risks.  Though poor in math, I am a calculating person.  Before I knew to count, I was naturally calculating in my breaths.
     I cannot live within the confines of my home's safe cocoon.  I must open the door.  I must lap up the pool's buoyant waters.  I must strengthen my legs.  I must kick the arthritis from my ankle's innards.  Zoomer is the vehicle to drive me toward my goals--to fulfill my needs, to satisfy my desires.
     Yet, Zoomer, "What are your capabilities--your capacities?  What are your limits?  Rain?  How much?  How heavy?  Snow?  What depth?  How far may I travel by the power of Baron's battery?  Watt must I do?  Am I speaking the language native to your understanding?  TELL me.  Do tell me.  I  MUST know.
      These are the this anniversary's answers I seek.  Yet, I know you may not choose to wrap up these answers and present them to me today.  This is my wish list.  Should you wish to present me with answers in a future anniversary's gift,  I would not complain.
     For now, engage me--present me with engagement in today's life.

A New Career? A Work in Progress...

     A new career seems to be starting.  It is more than a new job, yet, career seems to be too grandiose of a description.  Retirement--early retirement--has never suited my prejudices of the word.  Retirement and early retirement are choices made after a full career--at a prescribed time, at an opportune time thanks to a sufficient source of living.
     Am I the only person with these experiences, thoughts, or feelings?  What are yours?
     In July 2009, my paid work life ended.  I went from a full-time-employee--an FTE--to long-term disability--LTD.  Long-term disability seemed a bit too transient a term for my tastes.  A magical cure worthy of a personal interest news feature story will not be forthcoming.  I will not be returning to the paid workforce within my lifetime.  Let's face it, that will not happen.  But, do not despair.  I am doing my part to make possible that another individual may enter the workforce:) OK, maybe not, but it was a nice try:)
     My doctor gave me the best advice I have received during the past two years.  Get up and dressed at the same time, and invest yourself in something you enjoy.  Go to it, as if it was your job.  That is what the last few years have been.
     "The next chapter will be to strengthen myself physically as much as is possible."  That is what I told my colleagues, when I left my job--that was my life's priority.  Restoring my physical strength took months.  Precious chemical balance of anticonvulsants, and holding.osteoarthritis at bay by ankle surgery.
     Concurrent with restoring my physical strength I undertook an exploration.
     As I told my colleagues, "I must discover opportunities that call upon my mind, rather than tax my physical abilities." 
    Now, I am diving into that longer range pool of opportunities--swimming at the YMCA...volunteering.  OK, so I am just getting my feet wet right now.  Yet, that is a far cry from where I have been during the past several years.
   During more than 25 years in the work world, I stayed with the employer who hired me in 1985.  Within the company, I did the jobs that I was given.  Early on, I begged for a position more befitting my abilities--my potential.  Yet, it took years to get to any such position--longer than it should have--longer than it did for my colleagues.  However, I never dared step out and risk securing more fulfilling work, for fear that my disabilities--the cover of my book, in a publishing company--would work against me in demonstrating my capacities to fulfill the assigned responsibilities.  Was I right or wrong to act as I did?  I wonder.  Yet, I cannot torture myself with that wondering.
     Somehow, always I sensed that I would not retire from my job at the prescribed time.  I knew it was extremely unlikely that I would take the risk necessary to find more fulfilling work.  My sense about my retirement was accurate.  Yet, I did not see how it would come to be.
     I am feeling very blessed presently.   No longer do I work in the fast-paced, tension-filled corporate world.  I have had surgery to ameliorate bone spurs--osteoarthritis, and now, I can get out into the real world without fearing harm is being done to my right ankle, thanks to Zoomer.  I love surprises.

Crippled

     Nancy Mairs describes herself as crippled.  She is affected Multiple Sclerosis--significant aspects of her life.  Upon first reading her explanation regarding crippled, I cringed.  Childhood calls of "crippled" returned in an instant.  Mairs was clear.  She was not--she is not--prescribing the crippled label to all whose lives are in some way different from "normal,"  whatever "normal" is.
     I do not aspire to crippled certification, nor to being a cripple.  Yet, I respect her use of the label.  I understand the moment's hold it has on the body--on the mind.  Without aspiring to be crippled--to be a cripple--I must not run away, on my way to a different word, from the moment when crippled is the precise word that defines my moment's state.  Never did I imagine I would make such a statement about crippled, yet, it describes my current understanding.
    I am Patricia Ann Thorsen.  My family, my friends, and I call my self  "Patty."  Loss of stamina--loss of muscle tone--have brought me to stages I call physically challenged, and mobility impaired.  Yet, those terms do not encompass sufficiently the physical parts that are due to my cerebral palsy, and osteoarthritis.  I, like many people of a certain age, grew up as crippled, then handicapped, and then disabled.  I still describe the physical aspects, which have informed my spiritual self--my entire being--as disabled.  I do not mean to imply that disabled suffices to describe my entire being.
   I do need to be quite clear about my jigsaw puzzle pieces--crippled, handicapped, physically challenged, mobility impaired, and disabled.  Other jigsaw puzzle pieces well may enter my vocabulary--wheelchair user, wheelchair bound, confined to a wheelchair.  I do not think the latter two will define me, when I do get a wheelchair, and begin to use it.  Yet, in matter of fact, they will.   I pray that I will not run from the words before I become an intimate partner with my wheelchair--if she ever comes:)  This must be a journey, if I am not to fall victim to a wheelchair.
     I have no idea where this journey is headed--where I will travel.  Just as I had no idea of where I would arrive at the end of this posting, when I started writing it.

Left With Fear

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

Grieving A Body

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

My Body's Betrayal

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