If My Life Was Perfect...

     I have struggled to advise a family member as to how to fulfill their unique human potential.  Knowing the position of respect bestowed on me has given me a sense of responsibility.  Only following the Boston Marathon Bombings have I been given an inkling as to how to fulfill my responsibility.
    My family member lacks the sense of how to fulfill his adult responsibilities--fulfill his human potential.  Ascribing responsibilities on other intimates how they have failed their responsibiltiies to my family member has clouded his willingness to look at his own human potential--the gift he has been given by God--by his belief in God.  I know that belief exists in him.  I do not know the form of belief.
    My belief--the form of my belief--calls me to offer something.
    From an unlikely source--the Boston Marathon Bombings suspect--I understand one way--one something--I may offer.
    Optimist--idealist--that I am, recent years have taught me, "life is not perfect."  Self-pity is not the sum of that equation in my life.  So where does that leave me--how does that affect my offering to my family member.
     A List.  An Itemized--A Humbling List.
     If My Life Was Perfect...    
     I Would Not:
          Need to wear my ankle foot orthotic--my brace on my right leg
          Need to walk long distances with a cane
          Need to use a wheelchair
          Need to take medication to control my intentional tremors
          Need to take anticonvulsants to control my seizures
          Need to grab the right handrail with my left hand when walking up or down a flight of stairs
     I Would Not Fear:
          Outstretching my left hand--lose the use of my left and right hand by:
               Opening doorknobs
               Carrying heavy bags of groceries
               Carrying heavy loads of laundry
            My capacity to stand up from the ground
     People Would:
         Think my handwriting was beautiful

My Subconscious View. Me. LTD. SSDI.

    Me.  Work Ethic.  LTD.  SSDI.  Me.
    Work ethic was instilled in me from childhood.  By example.  By parental instruction.  By familial heritage.  From 1960 til 2009, Work Ethic was held in high esteem--faithfully unquestioned.
     SSDI.  Before 2009, initials.  Social Security Disability Income.  A paragraph in a yearly Social Security Administration statement of credits earned.  SSDI.
     LTD.   Before 2009, initials.  Long-Term Disability.  A sensible work benefit offering.  An insurance policy.  A minuscule deduction--$2.72? per paycheck I presume.  A remote need that echoed it the possibility of my imagination--a need vague to my view, yet, haunting to my anxiety.  An anxiety inexpensive to appease, however remote it seemed.  LTD.
    SSDI.  LTD.  I knew no one within the limits of LTD--of SSDI.  LTD.  SSDI.
    LTD.  My knowledge of anyone on long-term disability was LTD to no one.  LTD.
    2009.
    A defining moment in my view of the world--in a view of myself.
    2009.
    SSDI.  I knew no one on SSDI.  Enlightened though I thought myself to be, I had far different images of who were receiving SSDI.  Some of those images haunt me yet today.  They do not describe who I am, yet, they define my sense of what I believe I must be in order to receive SSDI.
    SSDI.  Bedridden.  Paralyzed.  Confined to a wheelchair.  Totally dependent.  Unable to meet my activities of daily living independently.  Feeding.  Bathing.  Dressing.  SSDI.
    Bedridden.  Paralyzed.  Confined.  Incapable.  Unable.  Incontinent.  Dependent.
    2013.
    Four years have passed since 2009.
    2013.
    I am redefining what my life within the limits of my body is.  Volunteer.  Researcher.  Swimmer.  Friend.  Sister.  Cousin.  Aunt.  Daughter.  Writer.  Catholic activist.
    2013.
    Yet, four years later, the haunting drumbeat of my Subconscious View tower over me--the haunting drumbeat is deafening.  LTD.  SSDI.
    2009.
    Periodically--necessarily--surveyed, the haunting drumbeat is pounded into my spirit.  LTD.  SSDI.
    Surveyed--periodically--necessarily.  My personal questionnaire.
    2013.
    Do I fulfill my misconception--the haunting drumbeat?
    OR
    Am I moving forward to Redefine My Life within my Body's Limits.
    Me.  SSDI.  LTD.  The haunting drumbeat is deafening to my spirit.  LTD.  SSDI.  Me.

A Fulfilling Living

     An amazing day.  An amazing week.
     January's ice box has moved into St. Paul today.  Yet, the sun shines.  Nary a cloud in the sky.  Cold hard facts.  I am warming to perfection.
     Monday's moments?
     Personal training.  New swimming equipment identified.  Noodles.  Paddles.  New exercises.  A stronger right hand perhaps?  Volunteering.  Research.  Pay dirt.  Struck gold.  Hit the jackpot.
     Tuesday's treasures?
     Catholic Church reform.  A new council.  The first of its kind.  Supporting researcher.  A witness to history that has yet to be made.  An invitation--a special invitation.  Do you want to share your story as part of a retreat on transition?  Amazing.
     Wednesday's wonders?
     Twenty-one Council members.  Twenty-one life stories.  Twenty-one crafters of a more democratic Catholic Church.  Wonder-filled.  Awe-inspiring.
     Thursday's triumph?  The noodle--the white noodle.  A hand clenched for a lifetime.  Through no fault of her own, my hand clenched tightly nonetheless.  Past efforts to open my clenched hand met with unwilling resistance from a stubborn soul.  There was just no possibility of an Open Hand--Outstretched Fingers, a Strong Wrist with a Firm Grip.
    An Open Hand.  Outstretching Fingers.  A Strengthening Wrist.  A Firming Grip.
    Amazing.  Wonder-filled.  Awe-inspiring.  Simple to some.  Amazing to me.

Brain Damage

    I have brain damage.  I am not brain-damaged.  I am not damaged goods.  I am not--I never will be--damaged goods.
     Brain damage.  Since birth.  At birth.
     The doctors to Dad.
     We almost lost her.  We almost lost both of them.  Your daughter's umbilical cord was wrapped around her neck five times.  The oxygen supply to the left side of your daughter's brain was cut off for several seconds.  The left side of her brain controls the right side of her body.
     The doctors to Dad.
     We don't know if she will ever learn to walk or talk.
     [I have walked.  I do talk.]
     How do you hear that and not fall to your knees in awe?  How do you hear that, and not be rendered utterly speechless?

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: The Pill

     Not as you might think, I took The Pill.  Not The Pill, but, The Pill, nonetheless.  Not as a young woman, but, as a young child--a six-year-old, perhaps.
     Born not of an egg, but, of tissue wrapping my left brain--scar tissue.  Five times, at birth, my umbilical cord was roped around my neck.  Five times, my umbilical cord--my Boa--constricted the flow of oxygen to my brain.  The Boa choked the left side of my brain lifeless.  The Boa wrapped my brain in tissue--scar tissue.
The Boa damaged my brain for life.
    The Boa chokes me.  Not satisfied to choke me once for all time, the Boa wraps around my neck
 again and again.  He charges my brain with surges of electrical energy.  Bolts of lightning travel from my brain down through my right arm to my right leg.  In thunderous storms, the Boa wraps himself more tightly around the left side of my brain.
    As the winner of a bad Miss America contest, the Boa falls into a satin Miss Seizure America sash.  Through the satin sash surges the seizures electrical energy.  From left side of my brain down across to my right arm and right leg the lightning bolt travels.
    Not concerned with my eggs' cycles, my eyes see no further than The Boa's wrap.
    Not as you might think, I took The Pill.  Not The Pill, but, The Pill, nonetheless.  Not as a young woman, but, as a young child--a six-year-old, perhaps.
    Not as you might think, I remember, "The First Time."
    With great anticipation of an unimaginable "present," I received a gift I did not request--a gift I needed.
    I sat at the round, teak, dinning room table.  With my brother, sister, and dad, I waited.  I looked out the window.  On the long driveway, my eyes were fixated.  The Saturday morning sunshine lit the auburn, teak dining room table.  We sat.  We waited.  Beyond the blond pocket door, Mom prepared a special breakfast.  Pancakes, perhaps.  Something to soften what was being forced down my throat.
    Before me was presented a pale, yellow-faced pill.  A small, triangular pill.  Dilantin, Mom tells me.  It is chewable. Hmmmm.....What will it taste like.
    I place the pill into my mouth.  I bite down.  Not bad.  Not sweet.  Not candy.  I never liked candy, anyway.

Epilepsy Chronicles: Humor

     Humorous?  Yes.  Humorous.
     There are many serious aspects to having epilepsy--to having seizures.  It is not a joke.
     Yet, there have been precious moments--precious in their absurdity.  Neurologists have an amazing sense of humor.  They call it bedside manner.
     The same neurologist, who told public television viewers this week that people with epilepsy foam at the mouth, once asked me, "how long did the seizure last."
      I went into the neurologist following the seizure to have my blood levels checked.  Did my medication levels need  to be increased or decreased, so as to prevent future seizures?  I understood the reason behind his question.  He had known me for some time.  He knew I lived alone.  Knowing that, he still asked, "How long did the seizure last?"
     A part of me was tempted to say, "Well, let's see, I looked at the clock and it said 6:40am, and I started seizing.  I looked at the clock at 6:42am, and I stopped seizing.  Gees.  I guess I should have looked.  After all, I was just lying on the floor.  I wasn't doing anything at the time."
     Come on, give me a break.  I had a few more pressing things on my mind at the time.
     "Get down to the ground.  Get away from things I could grasp onto." I chanted to myself.
     Equally humorous to the neurologist's question is my subsequent behavior.  Since that time, I make sure to look at the clock when I feel a seizure coming on, and once again when the seizure stops.  If I am lucky, my exhausted brain, and my memory will not be so impaired as to prevent me from remembering the length of the seizure.  I try to be a compliant patient:)   Sometimes, I go overboard:)
     But, far more humorous than that incident happened several years later.  I was in a neurologist's waiting room.  A different neurologist.  I was awaiting an appointment with him.  Suddenly, I started to have a seizure.  Fellow patients knew precisely what to do, and went into action calmly.  The neurologist was called.  He came out to the waiting room.
     "Are you OK?" he asked.
     "Am I OK?  Sure, I always wanted to come to your office and have a seizure!  Am I OK?  Have you ever seen a seizure before? Am I  OK!" I thought.
    In my 40+ years of experience with seizures, that remains my favorite seizure experience.

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.

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.

Epilepsy Chronicles: Precursory Shakiness

     Honestly, I don't know if what I am about to describe is germane to the Epilepsy Chronicles.  I think it is.      My thoughts, words, and descriptions deal with brain damage most directly, moreso than epilepsy per se.
     I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me.  These attributes may be seen as laudable, and, in one sense, they may be.  Yet, there is a neurological basis that makes these attributes essential.  I am not a doctor.   I have not studied neurology, or any scientific discipline that might offer me insight.
     I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams.  I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range.  Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed.  The opposite is true, too.  In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications.  Sometimes, an altogether different anticonvulsant is prescribed.
    Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others.  I recognize it myself.  All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically.  The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
    Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response.  Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult.  I know that a part of that quiet means removing any activities that I know will involve further neurological agitation.  I try to be rational, so as to explain that I can withstand some tension, frustration, and anger.  Yet, my rational efforts are useless.  My nervous system has been hijacked such that being physically steady is next to impossible.
     What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years.  My description today is fresh to my life--fresh to this moment.  After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred.  Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
     I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today.  I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?

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.

Stolen Dignity

     WHY ARE THE KIDS TEASING ME?

     This is a question first asked in first grade.  The question remains with me today, not as a fixation on long-forgotten people, tangible pain, or specific places.  No,  the sting of “Why are the kids teasing me?” and specific words, phrases, or actions was removed many years ago by writing about the question, and the insights the question has given me.

     The factual basis of the question was my bent right arm, and wrist, and limping right leg.  My early understanding of the question was centered on the facts.  Yet, although I sought concrete facts from family, dissatisfaction with the answers given to me led me through a journey that I understood only in its necessity.

     My dissatisfaction was not my expression of doubt—doubt of love my family had for me.  I had, nor do I have any doubt.  They loved, and love me.  My dissatisfaction was threefold.   First, the logic of ignoring the teasing.  Second, saying that something was wrong with the bullies was no better than my feeling that something was wrong with me.  No one profited from that approach.  Finally, the cowardice of school administrators not to address specific names involving teasing that I reported is unconscionable to this day.

     “Why are the kids teasing me” was a question that offered me a nascent understanding of “stolen dignity.” 

      The understanding, response, and inaction regarding teasing was my invitation into a lifelong journey.

     “Stolen dignity” is not a word that appears in the Oxford Dictionary, http://oxforddictionaries.com/ .  It is a word that takes a lifetime to understand.  Yet, pursuit of its meaning is worthy of our earnest endeavors.

Comprehending “stolen dignity” must begin with “dignity.”  The Oxford Dictionary defines “dignity” http://oxforddictionaries.com/ as, the state or quality of being worthy of honour or respect:  the dignity of labour;  [count noun] a high rank or position:  he promised dignities to the nobles in return for his rival's murder.  2 a composed or serious manner or style:  he bowed with great dignity.  A sense of pride in oneself; self-respect:  it was beneath his dignity to shout.

     “Stolen” is defined by the Oxford Dictionary http://oxforddictionaries.com/  as an adjective.  The dictionary’s definition speaks of ideas, rather than people, although I think it is plausible to insert “individuals” in the place of “ideas.”  Oxford defined “stolen” as dishonestly pass off (another person‘s ideas) as one’s own.http://oxforddictionaries.com/.

     Dignity is not a human quality that is earned, nor is it possible without life experience.  Dignity is a gift.  Stolen dignity is an experience, which is not earned.   Similarly, it is not possible without life experience.  Yet, while dignity is a lifelong process, stolen dignity may be given in an instant—in a moment shorter than is possible to measure by any mechanism.

     Stolen dignity is not a condition that is outgrown.  Stolen dignity may be inflicted with a piercing knife any time from birth until death do us part.

     Stolen dignity is not an irreversible sentence.  Fervor is the requisite spirit, which must energize all efforts to extinguish the root causes of stolen dignity.  Fervor underlies ever word I write.

Crossed Wires...Jangled Nerves...

Crossed wires….jangled nerves….

When you were born,

your umbilical cord was wrapped around your neck five times.

Crossed wires….jangled nerves….

The corded gifts that keep on giving—epilepsy…cerebral palsy.

Crossed wires….jangled nerves….

You have excess electrical activity in your brain--epilepsy.

Crossed wires….jangled nerves….

Epilepsy is like a thunderstorm in the brain.

Crossed wires….jangled nerves.

I can do it myself, Mom, don’t you know, I can do it myself….

Can’t you see, Mom, I can’t do it myself, I need your help.

Crossed wires….jangled nerves….

The faster I walk, the more I trip.

Crossed wires….jangled nerves.

Your cerebral palsy accelerates your aging process.

Crossed wires….jangled nerves.

The harder you intend to use your left hand, the more it will shake—intentional tremors.

Crossed wires….jangled nerves….

The more hostile I am, the more intense my tremors.

Crossed wires….jangled nerves...

The more data you throw at me, the slower I compute.

Crossed wires...jangled nerves...

The more instructions I hear, the more I must write them--

the more Velcro from my ear to my brain I need.

Crossed wires….jangled nerves….

The more instructions I hear, the more I must write--

the more Velcro from my ear to my brain I need.

Crossed wires….jangled nerves….

The less I write, the less I remember.

Crossed wires….jangled nerves….

The more I write, the deeper I think.

Crossed wires….jangled nerves….

The more challenges I am given, the more I want to surmount them.

Crossed wires….jangled nerves….

Epilepsy Chronicles: Ignorance. Understanding. Transformation.

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

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.

A Huge Difference Between Understanding and Acceptance

    "Your cerebral palsy accelerates your aging process.  Do you understand?"
....
     I was in a fog.  Sitting in an opulent hotel suite celebrating a family wedding, I was in a fog.  It never occurred to me that I could do anything but push my body as hard as I had been doing.
     Delusions of having some modicum of smarts were shattered.  The notion of there being alternatives to pushing my body beyond her limits destroyed.
     Long-term disability? SSDI?
     I knew the intellectual meaning of both.  Or so I thought.
     Long-term disability...LTD to some....
Long-term disability insurance would allow me to retain a significant percentage of my income should I become unable to work due to a disability.  Long-term disability insurance was offered for a pittance.  Quietly, I purchased the policy.  Saying little to many, it seemed remote, yet, more likely for me than others, that my disabilities might be amplified--they might deafen my cries to work.
     I could not conceive what it might be--how it might look--that I would be unable to work.  After all, I was stronger--I was more stubborn--than any obstacle my cerebral palsy and epilepsy might put before me.  Or so I thought.    I closed my eyes, and opted to buy the insurance.  It offered peace of mind.
     I thought I had looked at all of the angles of how my disabilities might affect my future.  I forgot.
     My capacity to look at all of the angles, literally, was obstructed.  I forgot.  I forget.
     My right eye wanders.  You could say, I don't focus on the fact that I have little to no peripheral vision out of my right eye. Never have I had it.  My world view has been left of center.
     SSDI?  Social Security Disability Income.
     SSDI was beyond me--completely beyond me.  I knew the words, "Social Security Disability Income." Yet, SSDI was something other people were on--something other people received.
     I was in a fog.
     "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."
     I was in a fog.  For the moment, I was sinking into a comfortable sofa, I was enveloped by loving family.
     I was numb.  My family stunned silent.  Together we sat, trying to absorb a future radically different from what we imagined--a future different for all of us as a family.
      "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."

Epilepsy Chronicles: How Long Did It Last?

"How long did the seizure last?"

     You know I live alone!  Let's see...I should be able to figure that out.  After all, I wasn't doing anything.  Oh, that's right, I forgot.  I know that I am lucky, because I usually get an aura--a feeling like you get when coming inside on a sunny day.  So, I knew to look at the clock before the seizure started.  Once the seizure stopped, I looked at the clock again.  Based on that the seizure lasted....Get real...my attention was hardly directed toward how long the seizure lasted.

    I do know it is important information to him.  I know that my neurologist can diagnose a seizure, in part, by its duration.

    How do I tell you that there is more to my seizure than its length?  How can I convey to you--you know--I live alone.  I am capable of doing so.  Yet, I am a bit preoccupied during a seizure.  But, how on earth do I tell YOU that.  You are a skilled neurologist, but, your people skills leave a lot to be desired.

     In the future, I will do everything I can to check the clock before and after the seizure.  After all, I don't want to disappoint you.

     There has to be another way to determine how long a seizure lasts.  After all, not everyone with seizures can live with someone or be with someone every moment of a day and night.  It just isn't practical!  

     What are people thinking?  Or ARE people thinking?  And people say that I am not very responsive.

The doctors tell me that my thought process is messed up after a seizure.  But, what about their thought processes? What excuses do they have for  being messed up in their thought processes.

    "How long did the seizure last?"

     Do you have any idea of how ridiculous your question sounds?  Have you ever had a seizure before?  Are you aware of the time warp I experience during a seizure?  ...Seconds last for minutes....minutes seem like hours...

    "How long did the seizure last?"

A Hijjacking

     Hijacking of planes was common in the 1970s.  Long before the Homeland Security Administration, the terrain was quite different.  Today, the Transportation Security Administration is charged with protecting the flying public from hijackings.
     The TSA has not been granted the power to prevent the hijackings I experience--hijacking of my nervous system when I feel emotionally threatened.  I can withstand stress.  Humor.  Reflection.  These are but two of the coping strategies I have used during my 51 years.
     Emotionally threatened?  If it is not rooted in withstanding stress, then what is it?  Though not a scholar of neurology, I do study the triggers.
     Friends do not trigger emotional threats to me.  They never have.  They never could.  Friendship is not rooted in power-based authority.  Good friends trigger no emotional threats to me.
     Authority figures.  Supervisors at work.  However much I liked the individual, I was afraid of being criticized negatively, or worse yet, fired.  I understood the terrain of being demoted--the terrain of being underestimated.  Being fired. Knowing that that was highly unlikely--knowing that intellectually--was far different from being free of the fear.
     Authority figures have not been limited to the work world, although those authority figures are the easiest to portray.
     I have had epilepsy since I was a child.  When I was born, my umbilical cord was wrapped around my neck five times, which cut off the oxygen supply to the left side of my brain. [If I had a nickel for every time I have uttered those words, I would be a rich woman:)]  One of the realities that flows from my birth is that I have extra electrical activity in my brain--a thunderstorm.  Anticonvulsants keep the thunderstorms at bay.
     I have been told I have intentional tremors on my left side,  primarily in my left hand--my predominant hand.  The harder I try to do a given task--the more I intend to do a given task, the more I have tremors.
     Upon learning that fact, no, long before that, I concentrated on maintaining a level of inner calm.  Just as I have taken anticonvulsants to keep my seizures at bay, so too I have needed to employ other strategies to maintain a level of inner calm.  Humor.  Music.  Reflection.  Writing.  Seeking the best in other people.  It may seem to be superficial to seek the best in other people--to seek the positive in life.  If done properly, it is far from superficial.  If seeking the best of life--the best  in other people--is undertaken in opposition to ignoring the negative, then it is superficial. Ignoring the negative in life--whatever, or whoever it may be--makes impossible any hope of living fully.  Seeking the best in other people--seeking the positive--is a hunt for a pearl.  But, it must be done with proper intent.  Ignoring the negative must be replaced with learning from what seems negative on a superficial level.
    These were among my strategies to keep the evil hijackers from taking control of my nervous system.  I have heard no one speak of being emotionally hijacked, or having his/her nervous system hijacked.  Yet, that is precisely what happens.
    I was hijacked emotionally today.  The evil hijackers took control of my nervous system.  I had the armor of anticonvulsants to protect me.  Yet, that was not enough to ward off the intentional tremors.  I try to preserve inner calm--ward off the temptation to be defensive regarding my human failings.  Yet, my evil intentional tremors manifested themselves in more illegible handwriting than that which is deemed on other days.
    The hijackers have been caught.  If they are to be neutered, they must be fingerprinted, and identified for who they are, they must be captured by professionals studied in where to quarantine them.

Invalid...Birth Defect...

     For a lifetime, words have fascinated me. Specifically, words used to describe individuals with disabilities, in common parlance.
     I was handicapped as a child.  Today, I am disabled.  Both are loving names.
     Cruel kids crippled me.  Punks proclaimed, "Palsy Patty."
     I was stunned by an adult appellation of Gimp.  I am Patty, I am not a Gimp.
     Yet, I am having the last laugh.  I was blessed with a lifelong sensitivity, and passion for words of all forms.  The sting of those words is replaced by dedication.  Words used to describe individuals, be the words adjectives, or nicknames, may in no way dictate derogation.
     Two words akin to handicapped, and crippled, were not spoken in reference to me.  Yet, they still sting.
     Invalid.  In-val-id.  In-va-lid.
     These two words speak volumes.  Do we hear the emphatic value judgment that we make?  Do we care?
     I don't believe these words are used as frequently as they were at one time.  Yet, they are worthy of our notice.
     Birth defect.
     Manufactured goods have defects.  Children are not manufactured.  They are not mistakes on an assembly line.  They are children of God.
     I may be said to have two birth defects.  But, they have names.  Call them by name.  Let them be known.  Let them be understood.  My birth defects are cerebral palsy and epilepsy.  The next time you meet them, in me, or in someone else, address them by name.

Moving forward....Almost.

     I never imagined what is exciting me right now.  I believe I am within several weeks of getting my wheelchair--a red wheelchair.  This week, I have felt the sense that everyone wants to see me getting what I never imagined might be best for me--the woman at the insurance company, my physiatrist, primarily.  I do not mean, by any stretch of the imagination, to slight the tremendous of family and friends.  It took me a year to come to terms with the notion that a wheelchair was my vehicle to living fully.  I knew I needed to come to terms with the idea--be emotionally comfortable with the idea--before I could engage in the advocacy necessary to go through the doctor appointments, the physical mobility assessments, and the stress associated with how well I could use the wheelchair.
   It is quite odd, at the moment my level of anticipation outweighs the prospect of losing use of my left hand.  That is MUCH more significant than you might appreciate, unless you know me.  All of my life I have had no fine motor skills in my right hand.  I use my left hand to a FAR greater degree than other people, who have full use of both hands.  That is not worthy of trumpeting on a daily basis.  In simple terms, I have never known any other way of living with regard to my hands.  Today, I said yes to the option to getting something that I may use if I come to the point of not having the requisite use of my left hand.  The full implications of not having the use of my left hand that I have today is not something that I can fixate my attention at this moment.
    My excitement may be more aptly described as satisfaction with myself.  In late December, when I met with my doctor to have the requisite mobility assessment for a motor scooter/wheelchair, I wanted nothing to do with either.  I begrudgingly opted for a scooter.  That was all that my emotions could handle.  In fact, when I tried to use several scooters, I was shown a wheelchair to try using.  I accepted the invitation to try it in the store.  Something seemed different, but, I didn't know what it was.  I stood up, and the man at the medical supply store said that I had been using an electric wheelchair.
   "What?"
     It couldn't be.  It just couldn't be.  I was too young.  Only old people--people who were slumped over-- used wheelchairs.  People in wheelchairs had speech impairments.  They could not be understood.  Their thinking was impaired.
     I am too young.  I don't have any speech impairments.  The doctors may have had serious doubts as to whether I would ever talk.  But, I proved them wrong.  And my thinking is not delayed--it is not impaired.  OK, my thinking is not exactly clear immediately following a seizure.  But, my seizures are rare.  I made my way through college.  I was not a star student by a long shot.  But, I did return, and was graduated with a master's degree.  And they said I would fall flat on my face--not in so many words, but through actions of doubt.
    "You did well with the wheelchair."
    "What?  That can't be."
     I left the store bewildered.  My insurance case manager called me.
    "Patty, think long term.  Think beyond what your immediate needs are.  Think what you will need in five years."
      "I don't want to.  That is too much.  That is too daunting for me.  What are YOU going to need in five years?"
     Dreaming that I was in a combination scooter/wheelchair, as I was crashing into the activity room of an assisted care facility unable to find the brakes did not help one bit.  I was completely out of control.  The nightmare of crashing into people was so vivid.  I was out of control--completely out of control.
     So, what was the turning point?  There were two.   First was time.  Second, the experience of being able to turn around 360 degrees in the elevator, while sitting in the wheelchair.  Not having to back out of an elevator.  I am sure there will be some of that.  Right now, I cannot focus on that.
     This has been a long road.  One and three-quarter years of not working, having diminishing stamina, and an arthritic ankle have taken their toll.  My mind needs what a wheelchair will offer.  To feel the support, and affirmation of my doctor, my case manager, and the medical supply company president was....no....is empowering.