I Can't Remember When....

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

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

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

            f.  Transfer from bed to chair

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

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

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

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

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

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

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?

Words. Abbreviated. Language. Corrupted.

     Obamacare.  "Ronnie Ree gun."  Pro-life.  Pro-abortion.  Romney-care.

     I am not a fan of  any of these words.  Corruption of words.  These four phrases are not political statements of my beliefs.  Not at all.

     Abbreviation of words.  Corruption of language.

    I value health care.  I am not opposed to Obama's health care programs.  "Obamacare" obliterates the reasons--the objections--people who use the phrase have.  Romney-care is nothing more than a knee-jerk reaction--an attention-getting word created specifically to express objection.

     Obstruction of justice.  Obamacare.  No, I don't mean "Obamacare" program is an obstruction of justice.  Obstruction of justice?  The term "Obamacare" obstructs the ability to revisit areas, which may be problematic in the execution of the statutes.  If Senators, and/or Representatives want to propose any provisions to correct unintended consequences of the program, their efforts are hindered by the emotionally-explosive term, "Obamacare."  O falls into the same pitfalls as does "Obamacare."

     Abbreviation of language.  Corruption of words.

   "Ronnie Ree' gun."  My elders have referred to President Ronald Reagan as, "Ronnie Ree' gun."  Contrary to the pronunciation the President preferred during his political career, "Ronald Ray' gun."  My sense  is that he may have used the previous pronunciation during his movie career.  If that is true, that does not forgive a "Ronnie Ree' gun." moniker being ascribed.  Those who know me know that I am not a Ronald Reagan-apologist.  I abhor name-calling.

     I do not feel particularly effective in affirming my convictions.  I pray my convictions will be heard without full benefit of my clearly-expressed thoughts and words.

    Abbreviation of words.  Corruption of language.

    Pro-life.  Pro-abortion.  Pro-choice.  Anti-choice.

    Abbreviation of words.  Corruption of language.  

   I intend no discussion of the issue of abortion.  Many people on both sides of the issue are far better advocates than I could ever be, or aspire, if I were so inclined.

    Life.  Abortion.  Choice.  Respect.

    Broad scope.  Vast intent.

    I treasure life.  Abortion has never visited my door.  I cannot speak from experience, or invest my precious energies in fighting for or against an issue with which I have no experience.  My life has given me a well-spring of experience to which I feel called to advocate.  I revere life.  I value choice.  I have made many choices, which are at the core of my past, current, and future life.  I have deep respect for each human being I have met, know, love, and  will  never know.

    Yet, I cannot distill my beliefs, simplify my convictions into nicknames, and slogans.  My convictions exceed the tight spaces afforded by abbreviated language.  My beliefs deserve more deliberation than nicknames, and abbreviated language afford. 

   Whatever the word, the language, or cause may be, may we abide by the treasure of life, the chalice from which our choice is poured, and the revere what respect deserves.   This is my prayer.

A Changing of the Guard

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

Poster Cures

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

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.

Epilepsy Chronicles: Misinformed

     Deeply disturbing information was disseminated, and stereotypes were reinforced last night during a television interview.  On September 10,2011, University of Minnesota football coach--Brad Kill--had a seizure during a football game.  His players, and colleagues knew of his seizures.  I have not met Coach Kill.  I report regarding what I understand of him.  Media coverage.
     I do understand what it is to have a seizure.  I have had seizures since childhood.  I am 51.  Each individual's seizures are different.  Yet, I am compelled to respond to the misinformation given, and stereotypes reinforced by a neurologist last night.
     Most disturbing of what the neurologist said?  Something to  the effect of, "People with epilepsy foam at the mouth."
     This is not true.  Case closed. 
     "Seizures are frightening."
      Yes.  Both for the observer, and for the person having the seizure.
      However, fright is not an excuse to stand by--panic.  You can help. 
      First, it is possible that an individual having a seizure may be able to hear what is being said during a seizure.    Often, I am.  Yet, the excessive electrical activity in the brain--the anatomical thunderstorm--drains me of the energy that otherwise I would use to respond.
     Second, not holding an individual during a seizure may be too extreme of a directive.  Beyond getting the medical attention I need, the most helpful--reassuring--action ever taken was from a colleague.  While my right leg was convulsing--shaking violently--she caressed my leg.  She told me I had done nothing wrong, I had no reason to feel embarrassed, and I would be OK.
     She caressed my leg.
     My colleague trusted what I had said--valued what preferences I had expressed to her regarding my seizures--such that she resisted the nurse who said not to hold my leg.  She was not restraining me from movement.  She was touching me firmly--reassuringly.  There is a huge difference.  Never have I heard a medical professional make that distinction.  There is a difference--a huge difference.
     As to embarrassment--being embarrassed by having a seizure--I understand.
     Yet, far more embarrassing than any seizure could be ever is not telling someone how you prefer to have your seizures handled, if you have seizures.
    Early in my career, my loved ones were concerned about I would say during an interview that I had seizures.  I understand.  I appreciate their advice.  Fear existed, and exists yet today.  I assure you, I did not walk into job interviews and say, "Hi, I am Patty Thorsen.  I have seizures.  Can I have a job?"
    I did inform my supervisors, and colleagues that I had seizures.  I gave them the basic emergency contact information.  I took one more important action.  I informed my supervisors, and friends how I preferred to have my seizures handled.  Embarrassment, or fear I felt in doing so was mitigated by the knowledge that they would know how to handle my seizures.
    Embarrassed by having a seizure?  Yes and no.  Yes, the times I have had a seizure in public are not my proudest moments.  Yet, once I have a seizure, I need to channel every ounce of energy I have, and every ounce that I don't have toward staying as calm as possible during the seizure--praying that the words I spoke about my seizures were heard.  During a seizure, I pray that people around me--people who have the energy to take constructive action--are courageous enough to do so.
    Whatever embarrassment we well may feel, we--any of us who have seizures--need to channel that embarrassment into helping other people to help us.  We need to make an investment in creating calm understanding--not fearful chaos.
    Friends and family may offer their loving questions as to how someone with seizures how they wish to have them handled.  Whether it be a reassuring word or touch, humor or whatever.  Honesty is the only way to dispel awkwardness, fear, and chaos.
    I have serious doubts about some medical professionals I have known, and with whom I have had interactions.  I have had, and continue to have the benefit of extremely helpful, competent medical professionals.
     Yet, the comments made by the neurologist this week made necessary my response.

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?

Do I Wish I was Younger?

     Some people wish they were younger--that they could relive their lives differently.  I do not.  Don't be mistaken, I have not lived unblemished by ill-advised words, and actions.  Yet, to relive my youth differently would be to negate the lessons I've learned--the insights I've been given.
     I would return to people, to places, and to events.  Not to change them.  To celebrate them.  To honor them.  But, not to change them.  To friends, to family, you know who you are.  Words escape me.  We know what we have lived--before us is our future.
     To unlikely people my mind is drawn.  To Katie, you taught me the meaning of grace--of disgrace, her antonym, as well.  You gave me poetry--"Brazen Honesty"http://patty-pattysponderings.blogspot.com/2011/03/brazen-honesty.html--a gift I shall treasure forever.  An unlikely gift, I dare say.  A gift nonetheless.  To Janet, never before had I met, and never again will I know, a piece of work such as you are.  Into my core, "there goes another gimp," you did gore.  Yet, your words broadened my vocabulary--sharpened my ear.
     My alter egos.  Pre-school giraffe.  A ballerina.  Patrushka.  Patty Tricia.  Pat.  Ms. P.T.  Thorsen.  Zoomer.  Aunt Patty.  Roboaunt.
     To places.  Michael Dowling School for Crippled Children.  Bassetts Creek.  2625 Vale Crest Road.  Washington, D.C.  Oslo.  The College of St. Catherine.  Grand Marais.  West Publishing.  Developmental Disabilities Council.
     To events.  Teasing.  Junior high school choir class.  My first class at St. Catherine's.  Baptism.  Graduation.  Master's degree graduation.  Master's degree graduation celebration.
     Do I wish I was younger?  Do I wish my youth I could reclaim?  No.  I treasure the joys.  I honor the sorrows.  Neither joy, nor sorrow could enrich me now, if I was younger.
     Once I was asked, "If you had not been born left handed, do you think you would have been right handed?"  I was tempted to say, "If you had not been born a woman, would you have been born a man?"

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

Hope...Understanding...

My child seeks hope.
My child seeks understanding.

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

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

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

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

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

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


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


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

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

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

Dignity...Defiance...Grace

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

A Human Inventory

    Long before computers automated the inventory process of goods, a relative inventoried the goods of several grocery stores.  Many years hence, a more sophisticated world has demanded a more advanced inventorying.  Valuations are conducted by many professionals, who begin where the automated inventorying leaves off.  Valuations established a working value by which business, or the lives of divorced individuals may move forward to more profitable--more fulfilling--lives.
    I have known two professionals who engaged in inventorying and valuations.  I find myself in the midst of a different--very humbling--sort of valuation.  I am being called to itemize how I live my daily life.
    How do I live my life?  Can I 1. perform this activity independently; 2. Can I perform this activity with the use of equipment or adaptive devices; or is it true that  I cannot perform this activity.   
   Dress;  voluntary bladder and bowel control or ability to maintain a reasonable level of personal hygiene; toilet; feed yourself with food that has been prepared and made available to you; bathe (tub, shower, sponge); transfer from bed to chair.
   I feel comfortable with each today.  Yet, it is daunting to see those very real prospects as a part of my future is akin to the decision to get a power wheelchair--to opt to receive a head rim that I could use at the time in my future when my left hand might no longer be capable of manipulating a joystick.
     That is humbling, to say the least.
    You will go to college.  You will learn to live independently.
   I answer the questions with those words in my lifelong memory.  I have achieved the first.  I continue to achieve the second.  The future?
    I know how I have lived my life until now.  I have seen deterioration of my body in the last ten years, especially in the last two years.  But, the future.  Seeing its truth presented before me in black and white--starkly--that is humbling.
    So, how do I live in the present, such that I make the fullest use of my own abilities currently?  How do I live in the present, such that I do not endanger myself--my physical capacities--for the future?  How do I live in the present such that I position myself--prepare myself--for the future, with all of its humbling prospects?
    Responding to the current valuation, I thought that my visceral response to it was the section regarding activities of daily living--ADLs.  I am not partial to any acronym--clinical jargon--that abbreviates individual human beings.  To some, activities of daily living--ADLs--is a foreign word--an unknown quantity.  To others, it is a clinic scheme used to organize the occupational therapy needs of an individual.  Yet, to me activities of daily living--ADLs--represents a test that I can still pass independently, or with some equipment, or adaptive devices.
  These are humbling questions.
  Will there be a day when I cannot perform this activity--any of the activities of daily living? 
   Dress; voluntary bladder or bowel control or ability to maintain a reasonable level of personal hygiene; toilet; feed yourself with food that has been prepared and made available to you; bathe (bath, shower, or sponge); transfer from bed to chair.  These are tasks in a list--elements at the heart of dignity.

Betty Ford

     Oh, gosh.  Betty Ford died today.
     My heart skipped a beat--sank--upon reading that former First Lady Betty Ford died today at the age of 93.  She served in office--as the First Lady--when I was a teenager.  Several years after my grandmother died of breast cancer--at a time when breast cancer ravaged the spirits of women, whose tissues it invaded--Betty Ford gave voice to the disease.
     Betty Ford was not an abrasive woman.  She abided by the expectations of her generation. She lived the realities of a demanding political life--the wife of a long-time U.S. Representative.  She raised four children.  She did not do so begrudgingly.  She was not seeking a career beyond her young family.  Her public career--her sphere of influence--would be broadened beyond what could have been imagined by anyone, thanks to the Ford family entry into the nation's history.
     Yet, at the same time, Betty Ford was hardly a spineless wallflower.  In the best sense of the word, Betty Ford was an opportunist--a graceful opportunist.  She took her life experiences--her personal challenges--and transformed them into sources of help from which others so challenged could find practical help, and personal strength.  Just as Betty Ford was the face of a country learning how to articulate what Gloria Steinem, and others advocated--women's rights.  Betty Ford was comfortable giving voice to uncomfortable social realities of our time together--marijuana, addiction, premarital sex, and abortion, among others.  Betty Ford gave a face--literally--to putt
     Obituaries, and memorials offered for individuals, who have died recently--Betty Ford, can seem maudlin.  Yet, maudlinness survives only when we fail to ignite in our spirits the essence of Betty Ford in our own lives.  How did we know her? When did we meet her?  Did Betty Ford give voice to values--issues--of import to us?  Did Betty Ford teach us anything about ourselves--about our world?

Employing Yourself

     Today, unemployment--finding work--touched me. Not me, Patty Thorsen, but, rather, someone I know was thrown by the bureaucracy of unemployment benefits--how they are administered.
     I feel somewhere on the continuum with Guilty at one end, Gratitude in the middle, and Insensitivity at the other end.  How can I possibly offer the support, and encouragement a friend deserves?
     My guilt? I am not faced with the challenge--the stress--of finding, and keeping a job.  The unemployment statistics.  Job creation.
     Gratitude?  My pace is mine to set.  I am free from the expectations of others--arbitrarily-established benchmarks of performance.  Swimming is mine to lap up.  I awaken to no alarms--my bladder takes care of that.
     Insensitive?  Yes.  I fear I am insensitive to the challenges--psychological challenges--of pursuing and applying for work that is below one's gifts--below one's potential.
     I hear the self-destruction that, in the long run, well may erode the faith, and hope necessary to make the most of one's gifts.  Self-destruction found in job hunting is masked by outrage at the system, outrage at the plight that individuals without any resources necessary to find a job.
     Never would I have imagined that I would forget the years of unfulfilling work, the frustration of being underestimated.  Yet, nearly two years have passed since I made an unexpected exit from the full-time work world--an exit after 24 years.  Occasionally I dream that I am trying to get back to work, yet, I never make it.  In the dream, I wonder, "What is wrong with this situation?"
     I know that finding a job is not easy.  I understand that seeking job opportunities that are beneath one's gifts, and potential is a painful compromise--a compromise of conscience.
     I do understand that persevering those trying times is paying off now.  A stable income...not excessive, but, stable, and secure.  Retirement.  Pension.
     I know that I wanted no part of what I am saying now, when I was working full-time.  For that reason, I question the integrity of my prayer.  Yet, my desire that friends, and family, who are in this situation, invest themselves fully in creating their new lives.
    My prayer for anyone who finds themselves underemployed?
    May you pour the anger, hostility, outrage, and frustration into an earthen vessel that you store out of your sight--separate from the human being, who must be employed.
    May you relinquish the burden of civic responsibility, and advocacy for others with fewer resources while you heal your wounded self.
    Civic responsibility, and advocacy will re-form itself within your spirit, when you emerge from the chapter of unemployment, or underemployment.  Have faith.
    May you define compromise.
    May you make necessary compromises.
    May you continue the pursuit of a more fulfilling life--a fulfillment of your potential.
    May you give no one the satisfaction of knowing that you are the person they may imagine--a person of lesser potential.
     You are better than that.  You are worthy of the challenge.  You can and will surmount the challenge.
     Employ your gifts.  Present them to the world with humility, grace, and determination.

Geography of Respect for Life

     I am perplexed by the geography of "respect for life."
     Affirmation seems to come too easily--what is one's positions on abortion, the death penalty, commitment of military forces to quell upheaval, and wars against humanity, as well as support for killing a despot, who orchestrated those wars?  Less immediate, although no less important are those who engage in the birther movement, and political rancor over so many issues--health care, and the federal budget, most notable to me.
     Cries for support of "respect for life" are usually singular proclamations, "I am pro-life," or "I am pro-choice."  Little more needs to be said, or so it seems.  I have never been faced with that question in my own life.  I have not known anyone closely, who has been faced with that situation.
     The death penalty.  I have known no one, who has confronted the death penalty.
     Most poignant to me seems to be the unabashed affirmation of killing despots--Osama Bin Laden, and Gadhafi come to mind.  There seemed to be great satisfaction, and accomplishment felt, when Saddam Hussein was killed.  I may be wrong, but in each of these cases, the satisfaction felt is an affirmation, "By the death of this individual, we have rooted out all evil from our lives.  We shall live in paradise from this day forward," or something to that effect.  This unabashed affirmation is the plateau of Respect for Life's Geography.
    Was there a birther movement prior to the presidency of Barack Obama?  If so, when?  Who was, or were the individual(s) targeted? If birthers were to prove their accusations, how would their priorities regarding the future of our society be changed--advanced?  I am of two minds.
   I have my own beliefs regarding the birther movement.  I shall share them shortly.  Yet, before I do so, I must be clear.  My questions are meant to imply no cynicism.  Are there more constructive means by which to address the doubts as to whether Barack Obama was born in the United States?  Is anyone, who is in the birther movement, proclaiming "respect for life" as one of their values?  Do they offer their thoughts as to how these two are reconciled within their value system?  With all due respect, I have not heard the juxtaposition of these beliefs expounded upon, or explored.
     The health care debate is one that I hope has ended.  I believe essential issues, and questions were at stake.  Yet, the tenor of the debate was not conducive to thoughtful, deliberative discourse.  The decibel level of the debate exceeded my tolerance level.  Guilty though I felt as someone who values my citizenship, my mental health was more important.  I needed to value my own mental health, if I expected anyone else do so. I needed to respect my own life, if I had any hopeful expectation that others might respect their own lives, and the lives of other human beings.
     I do not look forward to the Medicare debate.  Discourse regarding its future--how to strengthen it--is essential.  Yet, I fear that the decibel level will rival that of the health care debate.
     I shudder to use "respect for life," for fear that I am corrupting the phrase to bring integrity to my beliefs.
I pray that my affirmation, "I have a commitment to "respect for life," is understood with the full complexity with which it is lived.
     If profiled in traditional terms, I would be identified as a woman raised as a Universalist, who is now a Catholic.  I am a pro-choice woman, who opposes the death penalty in regard to any criminal offense.  I am a pacifist.  I take no satisfaction in, nor do I understand why it is thought that killing any despot will eliminate evil.  Yet, that profile of my beliefs does not reflect the texture---the complexity--of my commitment to "respect for life."
     I pray each of us who utters, "respect for life" does so with thoughtfulness--with reverence.  May we respect the convictions of others', whose convictions differ from our own.

Belittlement. Respect for Life.

     Once again, this afternoon, belittlement reared its ugly head, or so it felt.  I try to live with respect for different religious perspectives than my own--there is good to be found in all world religions.  I try to resist temptation--the temptation to be defensive--to say, "don't you know me well enough to know the serious reflection I bring to living a life of faith?"
     Ironically, a discussion of "respect for life,"--mutual sadness that the breadth of the term does not seem to be a part of its use--led to the derivation of the story of Maundy Thursday, and the actual events of the story.
Our agreement regarding the narrow use of "respect for life" in some discussions was missed.  A precious opportunity was missed.
    Taking biblical stories literally, or symbolically became a "gotcha" moment.  My antenna went up.  "Quick, an attempt of entrapment is forthcoming."
    I succumb to defensiveness.  "Many Catholics take a broader view.  Not every Catholic view 'respect for life' narrowly."  A defensive volley was lobbed back at me--reference to those who do have "a simple faith--a simplistic Catholic view."
    I grieve.  I mourn.  Three people of integrity.  Trapped in different ages of the same Church.  Pushed away...Drawn into...a Universal Church.  Different faces.  The same heart.
    There is good to be found in all faith traditions.  "Affirm, defend and promote the supreme worth and dignity of every human [being].  I mourn.  All three are members of the Universal church.
     "Support the free and disciplined search for truth..."  Though packaged differently, at the core, Universalist, and Catholic search for truth with the same depth of commitment.
     There are differences--important differences.  I mourn.  Yet, in my mourning, I question--do important differences preclude unity?  Do important differences preclude a unified pursuit for truth made the stronger by the diverse perspectives of the same truth?  Do the important differences preclude embracing the truth in Paul's words to the Corinthians?
    "So faith, hope, love remain, these three; but the greatest of these is love."

Maundy Thursday and Disbelief

     Last night, belief, logic, and belittlement clashed, and I failed on all counts to live with integrity within its triangle. I was raised by my parents--two individuals who were raised during a time when they experienced the rituals of Christ's life.  Absent from their experience, as I understand it to be, was a lack of how Christ teaches us to meet and build upon the events of his life--the spirit and wisdom by which he lived his life.  How do you explain Holy Spirit in logical terms--a 1940s white ghost?
     How do we affirm the life of Christ without sterilizing it to its bare realities?  How do you prove the truths Christ lived in concrete terms.  These questions drove two people of integrity from the Christian Church.  The subsequent answers they have lived, in part, is to belittle individuals, who commit themselves to Christ's life as being simple-minded.  My parents do live lives built upon much of what Christ taught and advocated--called for in our lives.
    In 1982, I committed myself to a life of celebration that exceeded logic's limits--reason's realm.  I committed myself to learn from, grow through, and live what Jesus lived.  In so doing, I was not decrying the foundation of the Universalism of my upbringing--there is good to be found in all world faith traditions, and we should support one another in a free and disciplined search for truth.
    Drawn to Christ by questions in search of answers beyond logic, or logic as it was lived in my home, I committed myself to listen to the words of Christ, to observe, and affirm--authenticate--Christ's teachings in my own life going forward.  Contrary to first glance, Universalist/Unitarian fellowship is not, or need not be diametrically opposed to Christianity.  I did not reject my Universalist roots as it seemed to my family and a Christian mentor.  No.  I embraced Christ as I saw him in expressed in a Catholic campus community, through Mass, and in the diversity of friends.
     Since 1982, I have not done well in meeting the criticism of faith in Christ.  The only meeting I have done has been in trying to share my life freely--trying to share how I live my life.  I do not do well to meet questions of fact that I understand to be static within Jesus' life historically ignorant of its vibrancy to life today.  I do not mean to imply that the way I live is better.  I do not want to entrap myself by belittling logic's limits, or reason's realm.
     In recent years, I have heard two types of Catholics, and Christians identified.  There are the thinking Catholics, and then there are Catholics.  Polite disdain is the best description I know to give to the attitude toward Catholics.  Rather than engagement with all Catholics, as I understood the call of Universalism to be--finding the best in all faith traditions--I am met with belittlement of other Catholics, and the smug tolerance of thinking Catholics.  I hear complaints that Catholics, and other Christians, I do not witness the recognition of the smug criticism, and intolerance.  I speak of Catholics, because it is in the Catholic Church that I have met beauty.  Yet, the same basic distinction has been drawn between Christians and Christians.
    I confess I do not understand the distinction--the need for smugness, intolerance, and recognition.  I want to understand.  I do understand that I met a different Catholic Church--a different expression of Jesus--in 1982 than was experienced in the 1940s.  I do know that they experienced a monolithic expression of Christianity.  There was one, and only one, way to be Catholic.
    I was astounded to discover the rich diversity of Christian faith's expression.  My new college friends did not fit into neat little boxes.  Intellect was not mutually exclusive to Christian faith.  Yet, intellect was not a guarantor of Christian faith.  Integrity was not the titled property of intellect.  Christian faith was not--is not--integrity's competitor.
    I can etch in stone definitions of Christianity's core--of Catholicism's essence.  Yet, I cannot etch in stone a static description of Christ, of Catholicism, of Christianity, as I will live it for the rest of my life.  I can and will share as much as a tolerant door--a tolerant window--is opened to me.

Life Changes...A Changing Life...

     On April 26, 2011, I will turn 51.  Had you told me two years ago that I would be living as I am now, I would have laughed at you.  Yet, in 2011, here I am.  This is the life I am called to live.
     When I left the paid work world, I was not at all sure what my life was supposed to be, much less than what I wanted it to be.  I was not retiring, yet, I did not know what to call my new life stage.  Retired, as I had witnessed it in my life, did not describe what I was entering.  In closest terms for me to describe, I was on disability.  But, what did that mean?
     My transition from full-time employment to on disability was abrupt.  Most people left their place of employment on a long-anticipated, established date.  Coworkers, and supervisors knew the date, and there was time to say thank you, to reconcile any short-term or long-term differences.  There were no conversations regarding, "What are you going to do, once you do not have to go to work each day," and "If I were leaving work, I would...."  There was no time to prepare for such a drastic change in living.  Retirees returned to work, and said, "I don't miss the work, I miss the people."  That was inconceivable to me.  How could 24 years of my life be erased from my memory?  Yet, that is what I would say now.  I do not miss all of the people I worked with for more than 24 years.  I do miss some of those people.  I am in touch with some people.  I do not miss the pressures of work.  I do miss the treasure hunt for information that I traveled with those who had questions, and needed answers.  That treasure hunt was not a daily journey, yet, when I loved that journey, and I am guilty of infecting many.
     When I tried to conceive what my life on long-term disability would be, I had no model to consult.  I felt guilty.  My conception of long-term disability was someone who was completely unable to leave their home.  Perhaps, the person's life circumstances were more drastic than that.  I had no idea.  As much as I told former colleagues that I would be "The next chapter will be to strengthen myself physically as much as is possible....I must discover opportunities that call upon my mind, rather than tax my physical abilities."  I had no idea what the words I had been given to express meant.  I had no idea.
    The physical weakening that led to my exit from the work world defined my life for the next year and a half.  I needed to embrace the Serenity Prayer.
    God grant me the serenity to accept the things I cannot change.
    I sought the courage to identify what I could not change about my new old self.  I needed to learn how to accommodate to my weakening body--my right ankle--and my capacity to stand up from the ground.  For a lifetime, I had resisted fiercely anyone who dared to say that I could not do a task that I was undertaking.  After all, I had never lived with the capacity to use both hands.  From birth, my right leg had been shorter than my life.  I did not undertake tasks that required a perfect balance.  OK, I dressed up as a little ballerina.  But, the balance beam was not narrow, by any stretch of the imagination.  I never was a gambler in any casinos.  The only challenge I undertook was that of a response to, "Do you think you can do that?" As much as I resented the comment--the lack of faith in me, all I could say was, "Do you want to make a bet?"
    Oddly, the suggestion that I consider going on long-term disability was made in Las Vegas.  In my mind, it was a long shot--the biggest gamble I had ever made.  The stakes were high--my future.  What was I getting myself into?  This gamble flew in the face of all that I had been taught.  "You will learn to live independently."
     Courage to change the things I can.
This entailed identifying what, how much, and how I could restore my compromised right ankle, my weakening left hand--I could not lose her strength, I just couldn't--and my capacity to stand up from the ground.  Accepting the things I could not change was more elusive for me to identify.  Yet, the things of courage were more concrete to identify.  Though identified more concretely, the things of courage were much more difficult to change.  Bending from my knees to the ground were not a part of my things of courage.  I knew better than to squander any courage I might be given on a youth's capacity that I had relinquished to an accommodating life.  My things of courage calling for attention were my right ankle--she was on her last leg--and my left hand--she was my sole source by which I could squeeze everything out of my life.
    How much?
    To what degree could I hope to be restored?  Before I could accept my compromised health, I needed to identify what my restored self would look like life--what would she feel like.  What was I praying to be restored was essential.  What was I not praying to be restored in my body?
    What did a resurrected body look like to me?  Others' conceptions--even those closest to me mattered little, if I did not have a strong sense of it in my own life.  I am not saying that my vision would be perfect, or what a resurrected body would look like--would be in my life.  But, if I was to have any hope than I better change resurrected body from a it--a thing--to an intimate in my life.
    I could not jump to the step of addressing the how before I understood the how much.  Though not fully understood by some who loved, and love me, by the grace of God, I knew that the answer to how could change on the basis of how much, my right ankle could be restored to her younger self.  My right ankle, my left hand, my left hip, each and every body part of my body is not an it.  They are my intimates.  They are she, they are her.  Only when I call them by their given names am I worthy to make decisions in their best interests--decisions in our best interests for a full life together.
    My vehicle to understanding how much was ankle surgery.  That action would reveal to me an answer to how much.
    How?
   This question frightened me.  To some, the concrete form of how--a scooter, or a wheelchair--seemed clear. Yet, I had not arrived at the concrete foundation I needed in order to wheel forward.  Others' attitudes, physical boundaries--navigating those physical boundaries--and my perceptions of individuals I had seen in my life were my biggest obstacles.
   Wisdom to know the difference.
   Before I could find solace, and embrace any wisdom, I needed to return to the matter of courage.  What of courage was I not addressing?  Now that I knew answers to today's things of courage was I not acting upon?  Only after I answered and acted upon those questions could I hope to be granted any wisdom.
    The Serenity Prayer is not a prayer to be navigated, and lived once and for all.  That might be nice, but, life doesn't work that way.
    On April 14, 2011, I was given a gift that I would never have imagined to be a gift--a wheelchair.  With the accommodations of recent years, I need to discover where I want to go outside of my home that I put out of my mind as unrealistic destinations.  With compromised stamina now restored, I may look at the outside world again, and try to get back into circulation once again.
     Had you told me two years ago that I would be living the life I am, I would have laughed at you.  Yet, this is the life I am called to live.  Yikes!
     What did a resurrected body look like to me?  Others' conceptions--even those closest to me mattered little, if I did not have a strong sense of it in my own life.  I am not saying that my vision would be perfect, or what a resurrected body would look like--would be in my life.  But, if I was to have any hope than I better change resurrected body from an it--a thing--to an intimate in my life.
     My vision is far from perfect.  Intimate though my resurrected body may be, if there is any hope of my intimate being perfected--fulfilled--such intimacy must be shared--respected, and embraced.
     Yikes!