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?

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

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

Enablement. Pity. Transformation.

     Tonight I acted such as I do rarely.  I disentangled myself from my enablement--enablement of an acquaintance.  Her lifetime.  Horrible abuse.  Justifiable anger.  Deep pain.
     I minimize no one's abuse--I minimize no one's pain.  Each of us have been given our own challenges.
     Our charge--our human dictate--is to transform our abuse--our pain--whatever its severity, whatever its source may be, into constructive motivation to live toward our future.  Though I may sound so, I am not Pollyanna's advocate--I am not her apologist.
     We may not transform our pain at the cost of another's life.
    "There, but by the grace of God, go I."  "I contribute, or act charitably on behalf of those less fortunate than I."
     Both reek of arrogance, unwillingness to understand the essence of transformation, to name but two.
     Enablement.  Pity.  Transformation.
     Enablement.  A noun.  Give (someone or something) the authority or means to do something.
     Pity.  The feeling of sorrow and compassion caused by the suffering and misfortunes of others.
     Do not get me wrong.  Sorrow and compassion are of tremendous comfort to me at moments of life's challenges.
     What I do not abide by is the rotten smell of eggs--the dripping of molasses--that protects pity's pearl.
     Tonight I was overcome.  A rotten egg.  The molasses.  It oozed out of my earpiece.  No longer could I digest the eggshells thrown in my direction.  I had to speak.
     Transformation.  A thorough or dramatic change in form or appearance.
     As someone who strives to live by the example of Jesus--living a life transforming, wallowing has no place--my wallowing, or other's wallowing.
     Wallow.  (to wallow) (of a person) indulge in an unrestrained way in (something that creates a pleasurable sensation.)  [Boldface in original text.]
     Unfortunately, wallowers do not recognize their own indulgences.  Unfortunately, people living transforming lives mistake their own transient enablement, and pity for their lives imbued with sorrow, compassion, and joy.  Such transience is normal--such transience is necessary to us mortal beings..
     I pray I may--we may all--call out those people who wallow in their abuse and pain.  I pray I may--we may all--affirm the transforming lives of the People of God who surround us.

Epilepsy Chronicles: In the Throes...

     I fear the worst.  My body is out of control.
     Relieve me of my consciousness.  At this moment, relieve me of my consciousness.  Help me.  God, help me. Help me to hang on.
     My right arm and leg are falling off my body.
     God, help me. ... Mom, help me.  I need you.  Mom, help me.
     Home alone, I cry as though Mom can hear me from the next room.
     Mom, help me.  I need you.
     "You will learn to live independently," she said.  "You will learn to live independently."
      My roommate is gone.  I need you.  How dare you leave me in my time of need!  How dare you leave me in my time of need.
     I am alone.  Someone has been here, always someone has been here--within earshot of my cries.  However embarrassed, or shame filled I have been that I have not taken my medicatiion, someone has been within earshot. 
     I am alone.
     Maybe if I turn on my right side, my arm and leg will stop shaking.  Maybe, they won't fall off my body.  What else can I do?
     Relieve me of my consciousness.  Let me sleep.  My head is throbbing.  Let me sleep off my throbbing headache.  My head is throbbing.   
     Finally, without my knowing, sleep is given to me.  My consciousness relieved.

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. 

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?

Entombed Body, Free Spirit

I imbibe in the wallowing wine,
Not of my taste, she is bitter.
I must wash away my sorrow,
Swallow the sadness that darkens my spirit.

A sour, bitter woman
I must not become.
A woman who poisons others with my dour view, I cannot become.

Awaken me from my sorrowful, soured, saddened slumber.
Awaken me to all that I will do yet in my life.
Awaken me to all that I will know yet in my life.

I cannot succumb.
I must not become.
Tempting though it may be,
I cannot enlist in the battle of antagonistic righteousness.

Hard though it may be,
My needs I must share.
Yet, how?
When?

Entombed body,
Give me room to sit.
Give me space to stand,
Entombed body.

Free spirits,
Together may we sit,
Together may we stand,
Free spirits.
                                     Undated, before 2008.
                                     Most cleansing of all therapy is writing.
                                     No burden is too heavy--no pain                                                    too intense for the healing--the freedom--                                      writing provides.
                                     I treasure her gift.

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.

Suffering--Accepted Sorrow

One has to accept sorrow for it to be of any healing power
                              The Abbess of Andalusia: Flannery O'Connor's Spiritual Journey                                                                                      by Lorraine V. Murray         p. xiv
     Suffering need not be a static, negative experience.  There is a huge difference between suffering and seeking suffering.  I do not subscribe to Julian of Norwich's appeal to God to be given a bodily illness to draw her closer to Christ--closer to God.
     Yet, I do not run from my own suffering--literally or figuratively.  A younger person might say, "Cure me of this debilitating state of being."  I am old enough to know that the entirety of my cerebral palsy may not be cured by the stroke of a magic wand--by the artful manipulation of surgical implements.  I have and I will submit myself to surgery to mediate the effects of my cerebral palsy.  
     If I do not believe that I may be cured by any means, what then?  Does my conviction give me license to give up?  Does my conviction give me entree to fill the position of victim to make my living?    
     I think not.
     To speak of our lives as God's gift to us is understood often to be arrogant.      
     I disagree.    
     Life experience with my cerebral palsy has led me to view walking as a gift.  Yet, as often as I utter the words, "Walking is a gift," the words sound alien--contrived--to my ear.    
     Yet, to my heart, "Walking is a gift," is an intimate companion.  How does my ear--how does my mind--befriend, "Walking is a gift?"
    Suffering--accepted sorrow--is the vehicle that transforms, "Walking is a given," to "Walking is a gift."