Where is the Middle???

     I find myself in the middle of a different search for information.  The search is new to me.  I am accustomed to the search for information regarding my epilepsy, and seizures most prominently.  Brain damage and cerebral palsy to  a lesser degree.  Although all four are intertwined.  My search is for how to be of compassionately informed support to someone, who is academically familiar with the medical condition he faces now as he looks in the mirror.
     With some, the temptation is to throw facts, and information--research--at them to help them contain their condition into a manageable form.  With others,, the temptation is to offer pity.  Sometimes, that is manifest in Poster Children to attract justifiable support for individuals with the condition, and for research.  On a personal level, pity well may be uncertainty, and discomfort, as to how to address the situation.  Most tempting, and most frightening to me is the offer to cure or to heal someone by mystical powers.
     Most helpful to me with regard to my seizures, epilepsy, cerebral palsy and brain damage is a balanced approach.
     I don't seek to be cured, or to have never had brain damage, cerebral palsy, epilepsy, and seizures.  I cannot roll back history.  Such is a waste of precious energy.  I prefer to seek insights--to how to live an insightful life--on the basis of my brain damage, cerebral palsy, epilepsy, and seizures.  To some degree, I have known that since eighth grade.
     I don't know how to be of help.  Facts, and information are readily available.  Pity is against my religion--pity that is closed to the possibility that more constructive responses are available.  Healing by means of mystical powers frightens me.
     I do make a distinction between healing by means of magical waving-of-a-wand means--full healing--and prayer.  The distinction is difficult to articulate.  Sometimes, the words may be the same, yet the tone is different--completely different.  I know it when I hear it--when I feel it.  I try to respond, so as to increase the likelihood of more compassion in the future.
    So, where does that leave the man facing a medical condition new to him personally?   We have known one another for a lifetime.  We respond similarly to much of what I have described--research, pity, cures, and healing by mystical powers.  I find it difficult to articulate the nuances in prayer that exist.
    I am leery of the support that consumer organizations can, and do provide.  I am not saying that they serve no useful purpose.  My concern is that the support--their expressed mission--is aimed more at publicizing research, and raising funds for the continuation for that research.  Both, essential.
    Where is the spiritual element of support?  Where is the spirituality of the human body in this discussion?  Often, the triangle, body, mind, and spirit," is discussed.  Of the three, most often, body and mind are linked.  Similarly, mind and spirit are linked.
    Yet, body and spirit seem miles apart.  I don't know precisely how to articulate it.  Maybe if I did--if we were willing to--articulate the relationship between the two, we might get beyond some ghost-in-a-white-sheet mentality of the body and the spirit.

Epilepsy Chronicles: A Firm Grip

     You have a hold on my right arm and leg no longer.  Yet, your grip on me is firm--firmer than I realize.  I try to erase you from my memory--put you in the well within me.  Yet, I look back to my own words--my sentences.  You have a firm grip on my mind.  You take words from my sentences.  You steal the precious part of me that, so desperately, I want to--I must give.
     You give me no clue as to where you are--no hint as to where to look.  You give me no key to find you.
     Where are you?  You are hiding from me.  Where are you?
     I try to understand.

The Epilepsy Chronicles: A Firm Grip on Me

   You have a hold on my right leg and arm no longer.  Yet, your grip on me is firm--firmer than I realize.  I try to erase you from my memory--put you in the well within me.  Yet, I look back to my words--to my writings.  You have a firm grip on my mind.  You take words from my my sentences.  You steal the precious part of me that I want to give.  You give me no clue as to where you are.  You give me no key to find you.  Where are you?  You are hiding from me.
     I try to understand.

Getting It Right

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

A New Career? A Work in Progress...

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

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 Cherished Life

For the most part--and you can believe this or not as you choose--I consider my life unusually privileged.  How many people get to adapt themselves deliberately to their circumstances?  How many get to adopt a pace that suits them--or even have a chance to puzzle what that pace might be?  How many get to devote themselves fully to the pursuits that most delight them:  in my case, observing, reflecting, conversing, writing?  How many cherish what little they have on any given day, in the full knowledge that on some tomorrow it inevitable will be lost?
                                Nancy Mairs, Waist-High in the World, p. 38
     Cherishing the unexpected is a true gift.  A colleague died this week at a very young age.  Her poignant funeral amplified how wonderful it has been--how wonderful it is--to be allowed to craft a life on my own terms.  I am not free of boundaries, or limits, but, I am free of artificially-imposed boundaries and limits.  My body--my geography of space--sets boundaries.  But, no longer am I bound by corporate etiquette, or corporate pressures.  Beyond a number of individuals, I do not think about where I worked for 24 years.
    Since I have stopped working in the 9-to-5 work world, I have been given new opportunities.  I followed the best advice given to me--get up every day at the same time, and get dressed as though you were going to a job at a set time.  I set no alarm.  My bladder takes care of that.  I love words, crosswords, current events, and world affairs, as well as reading, researching, writing, and reflecting.  Encouraged by friends, and family, I go to sleep each night knowing I am living by my lifelong passions.
     I do not impose anxiety on myself by setting unrealistic goals.  As active a volunteer as was my late colleague, her neighbor said that her vacation was doing nothing.  She understood the importance of playing to living fully.  Whereas many people try to fill the hours of their day meeting quotas, she understood that her work time was more productive--more enjoyable--by her rich playing, and re-creation.
     My colleague faced a ravaging illness.  Yet, she navigated it on her own terms.  Not perfectly, but, its imperfections are hers alone to know.  It is for us to know that her navigation was not worthy of heroic admiration, rather, it was her gift for us to appreciate.  I abhor saying that there are always people who are less fortunate than I am.  I have no intent to elevate my life experiences in the context of others.  Quite to the contrary.  My colleague touched deeply the individuals who helped her to navigate her dying days.  She knew she was dying--her death was imminent.  So, she surrounded herself with people who would celebrate her with stories, laughter, and beautiful poetry.
     Nancy Mairs, and my colleagues remind me how fortunate I feel--not by their dictate, but, by my own keen ear.  I work no longer, though, normally, my age prescribes it.  Yet, my "work" is my life's work--crafting my time and surroundings with what brings the most joy.  Reading, researching, reflection, and writing.  A cherished living is not free of challenge.  Cherished living must not atrophy my mind or my spirit.  Atrophying of my body parts tempts my mind, and my spirit to be obedient followers.
     My colleague allowed my embrace with old "partners in crime" from whom my body dictated my abrupt departure.  We may or may not gather again as a group.  Perhaps at the funeral of another colleague.  Yet, yesterday, each of us were able to say to one another, "Life is better now.  Despite the abrupt, painful circumstances surrounding our partings, life is better now."

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.

Mature Healing

     Nancy Mairs is an author, a Catholic, an individual with a wheelchair, who is affected by multiple sclerosis.  I was drawn to her writing when I had a voracious appetite to understand my own disabilities--cerebral palsy, and epilepsy.  There is a spirituality of the human body, which is central to how I live the spirituality of The Body of Christ.  It is amazing, it is not a mechanical ritual, nor an esoteric body of knowledge to be studied.
   I gravitate toward Nancy Mairs' writing from a new dimension.  Intellectually, I know she may not telegraph to me--warn me--of the pitfalls I may face, or how to navigate a new chapter in my life--living with the use of a wheelchair.  Yet, the anxious child in me is staying up late to cram for her final exam in living with a wheelchair.  What leads me to think that I will be protected from making mistakes using my wheelchair?  After making mistakes at work, a friend reminded me, "You are not PERFECT Patty, you are human!"
     Yet, news that I should receive my wheelchair within a week or so has accelerated my anticipation.  It is the night before Christmas, and I am waiting for my presents to arrive--I am waiting to open my present.  What is it that Nancy Mairs can tell me that will satisfy me?  I am not married, nor am I a mother, or an individual with multiple sclerosis.  I do not use the word "cripple" to describe the fact that I have cerebral palsy, and epilepsy.  Although, I do understand the feelings that might lead me to change my ways.  Yet, I am not to that point yet.  I do not aspire to using that word in reference to myself.  Nancy Mairs has opened me to the need to be more receptive to the words that I use in describing my cerebral palsy, and epilepsy, and now, my osteoarthitis.  Through her openness, Nancy has encouraged me to be more reflective about such adjectives.
     The return of my voracious appetite for Nancy Mairs, and similar writers, is a sign that I am healing.  My right ankle might be on her last leg, although she has been relieved of her painful bone spurs.  Yet, I am healing.  I am not healing toward a past version of myself--a version with more physical flexibility.  No, that is a false sense of healing.  Mature healing is not movement toward a perfect, god-like way of living.  No.  I have not been granted supernatural--infallible--powers that elevate me from daily struggles.  No.  Mature healing, if I choose to embrace it, calls me to seek accommodation to what I may no longer do.
     During a home evaluation, in which I tried out a wheelchair to see if it would work in my own home, I told the medical vendor that I had three questions to which I needed answers.  When he tried to evade my questions, I made myself quite clear.  First, I needed to know, "what can I do today with this wheelchair?"  Secondly, "with practice, what will I be able to do with this wheelchair?"  Third, "what will I not be able to do--what will I need to ask help in accomplishing when using my wheelchair?"  He was afraid of his answers to my questions.  I was forthright.  "I may not like your answers, but, I need to ask the questions--I need answers, so that I may live as fully as is possible."
     I am anxious.  I want to get started in my quest for answers.  As much as I may want the vendor, or someone else to answer my questions, no one may answer the questions for me.  I have forgotten the willful child, who unwittingly outfoxed the physical therapists.  When given tasks designed to get me to use my left and my right hands, I found a way to accomplish the tasks without using my right hand, which was affected by cerebral palsy.  I was too young to have plotted such rebellion.  I was just willful.  Much has changed, but, I think that willful soul is still resident in me, below my ankle foot orthotic, perhaps?

Frustration's Gift

     I marvel at the words I hear regarding Gabrielle Giffords' condition as she arrives in Houston for her rehabilitation.   I feel so good for her.
     The doctors are pleased that Gabrielle has acknowledged the speech of other people around her.  If the doctors did not express the optimism they have, two layers of frustration would set in.  Most acknowledge the first.  When she regained consciousness, the efforts to use the human faculties impaired by the traumatic brain injury impose frustration that all may understand.  Yet, far more frustrating than being unable to perform--to exhibit--any given task, is the unspoken frustration that screams to be heard--unspoken screams to loved ones.  
     "I can hear you talking to me.  My body is not cooperating with your orders.  But, I am here.  Be still. Listen. Pray. I can hear you.  I am here.  Let us not despair.  Let us be together in this moment's challenge."
     As I listen with others to Gabrielle's recovery, I cringe.  I pray.  Will she return to normal to satisfy her family, friends, colleagues, and doctors--her healers?  Or, will she be allowed to be turned to a new life that may emerge from what has changed her? Will she be given, not the old words to be spoken that acknowledge healing, but, the instruments to re-create her life anew?
     I hope--I pray--that Gabrielle may be spared the full onslaught of Frustration's Screams.  May she be given enough that she may open Frustration's Gift of Appreciation.

Lip Servers to Our Days or Civil Servants to Our Precious Lives

     Evil.  Heinous Act.  Enemy.  Vitriol.  Lip Server.  Civil Servant.
Listening to coverage of the shootings in Tuscon, I have been struck by the words we use to describe harsh experiences--harsh realities.  It is not to say that harsh words should be avoided, at all costs--at the further, unintended impacts they may have.  
     Evil has not been blared from the megaphone of Tuscon's experience.  Thank God.  May we commit ourselves to not embrace Evil--be it not in our explanations of actions taken.  Evil's Stinger is deep.  Deeper than we may realize.  
     Heinous Act?  Yes.  In the Vocabulary of our Culture's Speech, Heinous Act does not have Evil's stinger.
     Heinous Act possesses the same precision in its attack on our soul.
     Harsh words--harsh realities--call for us to be anesthetized.  Our spirits--our souls--must be strengthened--not calloused--by our wound's healing.  From our anesthetized wounds, we must commit ourselves to remember the color of our wound in the person we live on to be--to become.  Our wound may lose her sting.  Her color may fade.  Yet, her lessons to the better persons we might be must be heard.  Her lessons must be given voice in the persons we live on to be.   
     May we never enunciate the words, "the Enemy," to explain a Heinous Act.  May we not ignite the vehicle Enemy offers to transport our wounded soul.  May we never be a lip server--an endorser of The Enemy's word.    
     I pray Vitriol's lesson may be our guidepost on our journey to Civility. 
May we be Civil Servants to our lives, not Lip Servers to our moments--to each day we are given to live.
     I am hope-filled.  A fool I may be.  Yet, rather a hope-filled fool than a cynic's champion, or a skeptic's slave I hope to be. 

Setting the Wheels in Motion

     For the past year, the prospect of living with a scooter has loomed over me--over my future.  With Advent, I will prepare to move into a Red Scooter--a new vehicle for me.  The reason?  My get up and go got up and went.  It did not run away.  An aging body.  Weakening legs.  It limped out of my life beyond my grasp to retrieve.
     I am called to accelerate my pace toward a red scooter, so that I may move back into circulation.
     I know that fact. I knew that fact all too well.    
     Yet, that knowing did not translate to a fast, heartfelt acceptance.  I knew I needed to grieve the loss of walking--of moving quickly.  I knew I needed to grieve physically, psychologically, and emotionally.
     Grief.  Fear.  Facts.  Fear.  Acceptance.
     I am not Grief's sole companion.  Each of us is Grief's intimate. Not in the same way. Not at all times.  Neither is ours to dictate.
     Fear demands my full surrender, patience, perseverance.  Only then may I embrace Acceptance fully.
     Grief.  Fear. Facts. Fear.  Acceptance.  None  may not be rushed--abbreviated--if full healing is to be possible.
     Full Healing is no cure.  Full Healing will not return me to my former body.  Full Healing must be the beginning of a new way of living--a New Form.
     My New Form?  Yet today, I may walk some.  Stamina is no longer mine--not for now.  Advent brings to me preparation for a different movement.  More learning.  A Red Scooter.  My pace will be different from others so embodied.  My mind is ready to go forth with this New Form--with this Red Scooter.
     My journey has not been taken at a timed pace toward a known destination.  The time of arrival has been vague, at best, certainly not by any schedule known to me. My journey's pace has not been timed by My Will's control, strong though she may be.  Strength masquerades no control for me to exercise.
    Expectations--mine, others--were not for me to control.  Waiting with faith--praying--that the necessary fortitude would be given to me--that was mine to will.  
    Fear.  The scooter will fall on top of me.  Fact.  With time, the words to describe my fear have dissolved.  Fear.  I am becoming Pathetic with a capital P.  Pathetic Patty.
    I may not succumb to that Fear.  To do so would be to compromise the person I have been for 50 years--the person I pray I may be in the years I am given to live.
    I move forward now.  I ask that I may relinquish any expectation of when I should have accepted the inevitable movement into a scooter.  I ask that I release any temptation to judge how this next chapter is to live compared to what my fears have been.  
     Acceptance is no more a given than is walking.  Both are gifts.  Both are to be treasured.  Neither is to be demanded or second guessed.  
   I am not alone in my calling.  We are called--each of us is called--to move from Grief, Fear, Facts, and Fear to Acceptance.  Our time--the cause--will not be in sync--identical.  Yet, each of us must embrace our calling together with a Capital C--with a holy, Capital E.