Suffering From...

My jaw throbbed.  Rubbing it with my hand seemed to have no good or bad effect:  the pain was deep and untouchable.  Because the pain was genuinely unanticipated, there was no residue of anxiety to alter my experience of it.  Anxiety and anticipation, I was to learn, are the essential ingredients in suffering from pain, as opposed to feeling pain pure and simple.
                              Autobiography of a Face, by Lucy Grealy,  p. 16
     Lucy Grealy describes the initial feelings she had shortly after seriously injuring her jaw in an accident.  Lucy told me why I have responded to "suffering from" out of the mouths of other people in reference to individuals with disabilities.
    Was I being fierce?  Was I being defiant?  Maybe.  Yet, that has never satisfied my response, living with cerebral palsy, and epilepsy.
     My response to my cerebral palsy has evolved.  By nature, cerebral palsy has been my intimate since birth.  My umbilical cord was wrapped around my neck five times at birth.  Oxygen was deprived from the left side of my brain, which controls the right side of my body.
     For the first forty years of my life, I presumed that I would have the same capacities I had had since birth.  I anticipated no changes in my capacities as I aged, much less that my capabilities would be diminished at an accelerated rate.  Yet, that accelerated diminishment is precisely what I am living.
    I would divide my response to my cerebral palsy into two time periods--1960-2000, and 2000 through the present time.  Up until I was 40 or 45, I resisted reference to anyone with a disability as suffering from their respective disability.  Lucy Grealy just explained to me why I responded as I did.
    Anxiety or anticipation regarding a condition which has always existed is not possible.  I resisted "suffering from," because I was not anxious about how to live my life with full use of my left hand only.
     Different from living with the conditions I have had from day one, recent years have called for different adaptations.   Suffering from was an amplification for pity in my early understanding.
     Within the past ten years, I have come to a different understanding.
     Suffering from is not a sentence to be served.
     Suffering from is a journey to be navigated. 

Government Services--Personal Energy Policy

     Having identified myself in prolific terms, it is important to examine the services, and regulations of government.  How does my profile affect my needs for, and views regarding government services, and regulations.
     I must confess that my views are rooted in deep fear.  I understand the need for debate regarding the organization of and support for Medicare that is imminent.  Knowledge of my own need for it next year leads me to put my head in the sand with cotton balls in my ears.  The forthcoming hyperbole makes me ill.
     I could be the audience to whom politicians will base their positions regarding Medicare.  I do not want to be a part of politicians' Medicare focus group.  I cannot deny my needs.  I will seek what I need, nothing more, and nothing less.  That is my contribution toward a picture of a balanced budget.  My contribution may not be financially balanced, but, it will be balanced in terms of medical necessity.  I purchase private insurance commensurate with my medical need, and financial affordability.
     With regard to Medicare--its future health--we need to take several actions independent of any legislative action.  We need to accept our own aging, and the corresponding needs we may have--needs that are quite likely, however unsavory they may be.
     I do not know how to arm myself further from the imminent hyperbole.  All I may do is to assert logic, reason, and insight, and pray that it resonates somewhere within decision-making bodies.
     I have strong views against military expenditures, as well as support for other government priorities--government investments.  Yet, in the past ten years, I have learned the essence of energy conservation.  No. Not nuclear power, oil, coal, solar power.  I speak of none.  My personal energy.  My life is ruled by a single policy personal energy conservation.  I must not take on advocacy for issues outside of my passion--issues outside of my understanding--issues beyond my individual needs.  I consider myself to be concerned about social justice issues.  Yet, I invest my personal energies in trusting other more effective--more passionate--advocates, who have the knowledge requisite for success.
    May we adopt the policy of personal energy conservation to lessen the rhetoric, increase civility, and improve the quality of decision-making with regard to such vital issues.  If we do not do so, we deserve the quality of decisions that are made, and the tenor that precedes it.  I, for one, do not think we can afford such lavish use of our precious resources.

A Self-Profile...A Pre-Requisite to Government Services

     As a confessed liberal, recent political events call me to reflect on the essence of government in our daily lives.  Yesterday, I reflected on the need for a smaller government--the need to be more self-reliant.  Today, I have the clarity of mind that was absent last night to examine the other side--the need for government in our daily lives.
     Before I may undertake an examination of government services, a profile is essential.  I do not support racial profiling, or profiling that is conducted by others with regard to me.  However, if I am to proclaim any degree of objective--reasonable--examination of government services, I must begin with a profile of who I am.
     Facts serve me best.  I begin with my profile.  I am single. I am a daughter, a sister, an aunt of adult nephews.  I am a citizen of the United States.  I have a birth certificate attesting to my birth in the State of Minnesota.  I am a Caucasian woman.  I am a resident of the City of St. Paul, Ramsey County, Minnesota.   I live in a condominium.  I use elevators each day.  I use mass transit, skyways--elevated walkways--to navigate Minnesota winters.
     I am not a mother.  I do not have any children.  I am not a business owner.  I do not drive. I am not an animal owner.  I do not gamble.  I do not drink--I do not want to cause a seizure.
     It is essential to identify who we are in such a prolific manner, before assessing our positions regarding the role of government in our lives.  Only after we have made such a thorough, specific, and thoughtful profile of ourselves may we proceed.  We are obligated to answer two questions.  A simple, singular answer will not emerge from these questions.  However, our answers are essential in their complexity.
     First, who am I in factual terms?  What are my personal roles in relationship to other people--to my community?  Where do I live?  Where do I work, be that full-time, part-time, or work outside of the paid  workforce?  What services do I need?
     Second, in factual terms, what roles common in relationships, and community do I not play?  What very basic needs do I not need in my daily life?
     Are we willing to undertake such a self-examination?  Is it easier to acquiesce to the prevailing community beliefs, and political positions?  Or is it easier to submit our resignation to others of differing beliefs?
     I believe such a self-examination is essential to being very precise about our needs--all of our needs.  My prayer is that clarity in decision-making, and a commitment to avoid hyperbole would emerge.

Respect. Listen. Negotiate. Compromise. Agree.

     It is quite simple. Agree on one basic principle as the foundation of all negotiations. None of us is guaranteed that we will wake up tomorrow with the same capacities we have today. We are equal partners. None of us is braver due to military service. None of us is less fortunate due to disability, financial status, or any other quality. Each of us is human. Sit down. Listen. Respect one another. Negotiate. Blame is a luxury we can ill-afford. Sit down. Listen. Respect. Negotiate. Compromise. Agree.

     The budget negotiations engender feelings different from moral indignation, or outrage.  Self-righteousness, outrage, and moral indignation siphon off the vital energy necessary to negotiate with reason, logic, and respect.  On a balance beam, this ballerina is left of center.  However, she does see the value of what both sides of this debate are saying.  

     To conservatives, I understand some of what you say.  It is our responsibility to be less dependent upon government, if we are to solve budget deficits.

     I don't know the extent to which I may do that.  Yet, you do lead me to reflect upon what my dependencies are.  What actions am I taking to depend upon the private sector, and spur business in my community?

     What actions have I taken?  Two primary investments stand out.  Long-term care insurance, and long-term disability insurance.  

     I recognize my needs--physical, financial, emotional, psychological, social, and spiritual.  I recognize my social status--not my economic classification.  I am single.  I have cerebral palsy.  I have epilepsy.  I take medication for seizures.  An ankle foot orthotic--a brace, and durable medical equipment--a wheelchair, are undeniable parts of my present, and my future.  These are facts.  My feelings regarding these facts are irrelevant luxuries that I can ill afford.

     Though the daughter of an accountant, I did not understand the practicalities of a balance sheet as deeply as I do today.  With facts, realities, needs, and resources identified, the next logical step is to ask, what actions am I taking, within my capacity to do so, to ensure that I live a high quality life.

     I am single--the youngest of three "children."  Though I am blessed with a loving family, I need to secure resources to ensure a full life.  Thus, long-term care insurance.  That is a contribution toward a future that I have yet to live.

     Cerebral palsy.  Epilepsy.  These two facts did not represent degenerative diseases in my understanding.  Epilepsy is not.  My cerebral palsy is a co-conspirator with my aging body.  My cerebral palsy accelerates my physical needs before they would present themselves to other individuals.  Though not fully aware of, or enthusiastic in embracing my future needs, a little voice of wisdom advocated on my behalf.  The wise, though timid, ballerina tiptoed into a long-term disability policy.

     Long-term care insurance, and long-term disability insurance are hardly glamorous trophies to display.  Yet, they are but two actions taken that will and have lessened my dependence on the government.  I have taken a small part toward lessening some of my dependence on government.

   Another action is more subtle--my intent.  I have no intent to ask for more than I need.  Needing and deserving are not synonymous.  

    In 2012, I will become eligible for Medicare.  I am fully aware of what is medically necessary for my survival.  Much is said of Medicare fraud, the ailing health of the Medicare program.  Yet, little is said of being cognizant of our medical needs versus our medical deservings for lack of a better word.   

   I nurture strong relationships with my family, and friends.  I am engaged in a vital faith community that challenges me to live fully.

     As to my liberal beliefs, my assessment is in different terms.  We do need to present a stronger case for the people we are trying to protect.  We do ourselves a great disservice to speak of those less fortunate than ourselves.  That weakens the entire basis of our beliefs.  Anytime we parade individuals up as poster children for a cause, we provide conservatives with an easy target.  In no way am I saying that the individuals mentioned are not worthy of the relevant services.

   We are not providing a clear picture of who needs the relevant services.  Any one of us may find ourselves in need of the various programs, and services for which we advocate.  Not sometime in the distant future.  Tomorrow.  We may find ourselves in such need tomorrow.  We must broaden the base of who the programs and services are promoted to benefit.  This is not easy.  It is difficult to admit.  It is difficult to demonstrate.  

    We must dispense with a we-versus-they, or us-versus-them model of policymaking.  As long as we preserve an us-versus-them policymaking model, it is the quality not the financial figures of our budget that will be in a state of deficiency.

    Each of us is responsible to make an honest accounting of our needs, our resources, our actions, and then return to our outstanding needs to settle this deficit.  We must dispense with bravery, and less fortunate than in order to center ourselves on the balance beam.

Earthquakes and Seizures???

Eyewitnesses are reporting that a 7.4 earthquake has occurred in Japan.  I fear earthquakes.  I have never experienced an earthquake.  My fear is not routed in its unknown quality to me.  Not exactly.
     I have spoken with California earthquake veterans--Minnesota natives.  My questions??
     First, what does an earthquake feel like?
     Second, what distinguishes an afttershock from a separate earthquake?  Is it a function of time?  Is it a function of the earthquake's location?  Is it a function of the earthquake's strength?
     Third, how can you quantify the exponential nature of earthquakes on a human scale?
     Fourth, is there any parallel--scientific, or otherwise--between a seizure, and an earthquake?
     I have never heard anyone posit a correlation between earthquakes, and seizures.  I know individuals familiar with earthquakes.  I know some individuals with seizures.  Yet, no such lay experts have expressed this question.  I have had seizures since I was a kid.  Some of my seizures have been grand mal--tonic clonic seizures.  I have told family, friends, and coworkers that if I have a seizure to reassure me.  Specifically, during a tonic-clonic seizure, it feels as though my right arm and leg are going to fall off of my body, due to the violence of the shaking.  In my conscious moments, I know otherwise.  Yet, I have heard no one else report such feelings, or experiences.
     Finally, if a correlation between seizures and earthquakes does that correlation inform how seizures, and earthquakes exist?
     I don't know whom to address.  I don't know what forum to direct the individuals with information, and insights to offer what they know, feel, and experience.  I do know that information, experiences, feelings, and insights must be given credence if these questions are to be addressed.  The specific answers are not as important as is the use of a deliberative decision-making process.

Reluctant Disgust

    Walter Cronkite and Eric Sevareid were nightly duties to attend to--a half an hour interlude from the chaos of a family of five.  You did not dare talk during Eric Sevareid's reflections on current affairs.  Listening to the news was as important to being a citizen as was voting.
     Much has changed in 40 years.  The Cold War has ended.  The Vietnam War is history.  The Apollo missions into outer space ended, and now NASA'S Space Shuttle program is coming to a close.  Eric Sevareid's voice has been silenced.  Walter Cronkite's "And that's the way it is," no longer is the way it is.
     Some call it hyperbole.  National security "experts" call it chatter.  Whatever the public venue, reflection, and thoughtful deliberation seem extinct.
     Where are the reasonable voices?  Issues abound.  Yet, the chatter--the political hyperbole--has drowned out the time for quiet meditation.
     Technology need not be the villain.  Moderation.  Selectivity.  Alternative news sources.  Proven integrity.  No enemies exist--no villains await infliction of violence--unless we certify them with our gullible trust.
      Debate about the federal and state budgets is woefully lacking in thoughtful, conversant discourse.  I am grateful that the health care debate has ended.  I fear the much-needed discussion of Medicare.  Both are too close to my past and future realities.
      I fear I am losing, if not already lost, a principled, spirited expression of citizenship.  I fear I have stopped listening.  I do turn off coverage of current affairs that disintegrate into a verbal free-for-all.
      Have my convictions narrowed?  My willingness to stand up for my beliefs disappeared?  I fear my beliefs have been stripped to one.  I am not a violent person.  Yet, during the health care debate, I wanted to throttle those who incited hyperbole, and fertilized a futile free-for-all.
      I want to send an open letters to all decision-makers--to all citizens, with a very simple message:
      We have no guarantee that we will wake up tomorrow with the same capacities--mental, or physical--that we have when we go to bed tonight.  Our decisions must be rooted in that appreciation.

Unexpected Excitement

Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons.
Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter;
for always there will be greater and lesser persons than yourself.

Enjoy your achievements as well as your plans.
Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery.
But let this not blind you to what virtue there is; many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

You are a child of the universe, no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be,
and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.

Desiderata,   © Max Ehrmann 1927

     I have presumed gracefully surrendering the things of youth. to be tinged forever with a requisite grief, and loss, and antithetical to celebration, much less joy.  This may seem quite strange.  Never have I been a person, who longed for my younger days as being such that I wanted to return to them indefinitely.  That is not to condemn them either.
     Today, I learned that my wheelchair is in Minnesota on a truck, and will be delivered shortly.  We shall see  what the precise definition of "shortly" is, but, at this point, I am optimistic that it will be sooner rather than later.
     When waiting seemed endless, I told people that I had forgotten where it was that I wanted to go once I do get wheels.  To the grocery store.  Swimming.  The rest is beyond my immediate imaginings.  
     Two pictures in my home remind me to continue to imagine.  There is a picture of a six-year-old little girl dressed in a pink tutu, pink tights, and a pink and purple parasol.  Surrounding her were kids sitting in wheelchairs.  The little girl concentrated on the beam.  She had no ounce of doubt.  She could be a ballerina.  That ballerina took her first steps in March 1966.  Forty years later, that ballerina donned a black cap and gown, with a yellow and purple hood.  Proudly, she shook hands with the college president.  That moment is captured--framed--for me to remember always.  It wasn't as hard as I imagined it might be.  Grades were not the object.  In fact, the worse I felt physically, the better were my grades, and the more rewarding my learning.
   As a dear friend said, "Do it for the sheer joy of learning."  Now what? "Do it for the sheer joy of living?"

On the Front Line...In Harm's Way...

     American troops fighting in Afghanistan, Iraq, among other battlefields, were described as being, "people on the front lines," and "people being placed in harm's way."  The context?  An inventory of those who would be affected by a federal government shutdown.
     "People on the front lines," and "Being placed in harm's way" have bothered me long before this morning's newscast.  It has seemed to me to be an unnecessary expression of bravado.
      In no way do I mean to belittle what people in military service endure.  I have listened intently to first-hand accounts, and I have viewed moving photographs of the Korean War.  But, for now, I must dispense with a worthy exploration of the singular military meaning of these phrases.
     "People being placed in harm's way" and "people on the front line" should be considered in the context of women, and children, primarily, who seek out the protection of domestic abuse shelters.
      I live in the State of Minnesota.  Like many other states in the United States, Minnesota faces a huge deficit that needs to be reconciled.  I make no claim of being an expert in budgets, and finances.
      Yet, I cannot reconcile, morally or ethically, the comment of one state legislator, who suggested cutting state funding for domestic abuse shelters.
      Moral outrage is my response to the justification he presented.  He suggested that existing shelters were not at full capacity.
      Full capacity may be a central function of productivity in the business world.  Yet, how can we as a society possibly quantify such life-or-death human need?  What does it say of our society, if our domestic abuse shelters are at full capacity?
     We speak of putting our lives on the line,  people being on the front line, and people put in harm's way.
     Don't individuals who need domestic abuse shelters fit into the definitions of these three phrases?  If not, aren't they victimized twice due to no action of their own?

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.

A Convergence of Ages--Family Ages

     This weekend three generations spanning sixty years converged.  An evening gathering.  I sat, and listened as an aunt, and a daughter.  Though old enough to be so, I am not a mother.  My daughter's eyes were clarified.  No one may defy age forever.  My head knows this truth.  My daughter's eyes saw what the youngest in our gathering did not see--did not want to see or hear of his elders.
     Though I have been blessed with a strong bond with my nephews, life circumstances do not give me the vehicle necessary to convey the importance of working.  I am a poor example to my nephews of the commitment to the less glamorous parts of life--the substance of the working life.  Rarely am I speechless.  Rarely am I at a loss for how to communicate what needs to be said in a gentle, but diplomatic manner.
    I recognize the fallacy of the question, "What do you want to do when you grow up?"  Yet, there must be some such question that is not laden with condescension, and implications of disrespect.  What is the question?  I believe myself to be an open-minded person, who strives to avoid the pitfalls of being judgmental.  Yet, I am frightened by the cluelessness I am witnessing.  Is what I am experiencing just my time for what all "older generations" of youth experience?
    I guess if I am questioning what the proper question of those younger than I, then I should hardly expect to have any answers.  So, I ponder.